Introduction to our world…

Born and raised in Johannesburg I always had this dream of working with children. I started my dream at Wits University. My ultimate goal in life was to get my bachelors of education, and then to go out into the world and make a difference in children’s life’s. I was living life to the fullest. Or so I thought…..

It was one of the darkest days of my existence when I suddenly heard that we are moving to Oudtshoorn, and that I have to pack up 20 years of my life. I honestly thought my line was drawn, and that I am most probably going to get hurt very bad on the way, and never see mother earth again.

It felt like life could not get any worse. Isolated in a small town I didn’t know. I felt like an alien. Little did I know that this was only my first taste of feeling like a different specie, feeling like an outcast in life.

I tried everything I could to get back to Johannesburg. My lungs needed the polluted air, my ears had to hear the city sounds, my heart needed to follow it’s dream. But. No matter how hard I tried. I was being held back. Something kept me in Oudtshoorn. Little did I know that one day I will work with children, MY OWN children…..

Eventually, I met my husband.Meeting him was uneventfull. It was everything except the conventional, fairytale, meeting of two souls type of thing. It was more like a day to remember, for the WRONG reasons.  I’m sure our great grand children will have a good laugh one day. (Dear husband. In case you are reading this, you know I still have photo’s of the day we met, so be nice to mommy. OK.)

When contemplating about my life. I sometimes imagine that scene in Forest Gump. Sitting on a bench in a park, with a box of chocolates in front of him. A variety of chocolates. A lifetime of opportunities…

Only in my imagination. I am the one sitting on the bench, holding that box full of sweet experiences, my mouth drooling for the caramel filled chocolate, when someone comes along, and takes the only caramel one  . Forcing my tastebuds to experience a whole different sensation that they didn’t plan.  

For some strange reason, when starting to live in Oudtshoorn, I always had this motto.  I always said to myself. If I ever meet a guy, I want to ask him two things. If he awnsers yes to any two. Then it is goodbye. No further questions, no checking out his looks. No nothing.   The questions I wanted to ask was quite plain and simple: ” are you younger than me?  Do you have any thought of EVER wanting to do ANYTHING related to a farm?

Oh goody. Was I in for a ride! Life gave me exactly what I didn’t plan. I am currently married to a farmer for almost 12 years, and YES he is 8 months younger than me!

My life this far have taught me to NEVER SAY NEVER.  That ANYTHING is possible. And that God works in MYSTERIOUS ways. 

My name is Marné, by God’s will, I am a full time mom of 2 beautiful boys, our eldest, Nickholis being diagnosed with autism. (please contact me if you would like my 76 page work description).   I am also a wife to a very hard working, best father in the world,farmer. And then of course I am stepmother of lots and lots of pets.   We live in a small farm community outside Oudtshoorn, in the Klein Karoo.

And now that you know how I found my roots here.  I would like to take you along our journey of raising our autistic farmer.  Buckle up, hold tight,and please be seated at all times. This journey can take you from singing in the rain, to looking for a contact lense in a dessert, to wondering what the hell just happened in less than 10 seconds.

 

 

 

 

 

 

 

 

 

 

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Unveiling the deep dark secret behind Raising my autistic farmer

Please note that the following content might be disturbing and is not suitable for sensitive readers. Reader’s discretion advised.

And NO you can’t go bother authorities with complaints. Because the author of this disturbing documents is unavailable, scrubbing floors of the looney bin.

By now, my loyal readers will know quite al lot about the dynamics of Raising my autistic farmer. But. Due to the severity of the issue, I have had to hide one big secret from the public eye.

It’s a male.

Causing havoc in my mind. Stalking me from day to day. Tapping my energy. Following my every step. Just by talking about my stalker gives me cold shivers. His name is

JACK

Born in Prins Albert. An unwanted soul. Sold at the Prins Albert flea market for only R50. Samaritan’s called Ettiene and Maria gave this orphan a home, and a big piece of farm ground to run on and to try to exhaust his weirdness on. But. With farm ground comes ostriches. And our weird orphan thought ostriches was a cool prize after running a marathon on the farm….

Eventually my husband took in this weird acting, looking male called Jack. For we are dog lovers. And I personally love dogs. I sometimes feel like running for president of dog rights,my favorite excursion being that to the SPCA to pick up dogs. Yes. I am the world’s biggest dog ( and cat) lover.

When it comes to Jack. I often feel like he is not a dog. More like an alien covered in dog skin. Beamed down to earth to try to steal my soul or something. Jack, can’t be a dog. Dogs don’t act like Jack. Jack is allien from another planet. I sometimes firmly believe this in my moments of wacky thoughts.

This dog, as society classifies him. Follows my every step. Literally STARING at me for most of the day. It is the most uncomfortable thing being busy, and you feel the presence of this weird dog. Feeling his eyes burning on you. I am still mastering the art of ignoring him. But it’s really difficult. He has food, he gets more than enough attention, he does not want to play with me, he just follows me, and where I go to standstill, he goes and sit and just STARE. Its weird, and it’s uncomfortable, and sometimes it taps my energy out of me.

And oh goodness. If I ever get to see Ettiene and Maria again. I want to ask them why on earth did they call this strange male JACK?????

Because when I am irritated with this dog, and I want him away out of my personal space, every word I tell him rhymes with Jack! It’s crazy. So when you are angry, complaining to this weird thing following you, you are RHYMING!!! And not only does it sound funny to you saying it, but when your husband hears it, he starts laughing. And then a moment of chasing it away,turns into a moment where this weird thing thinks I want to play with it, and then jumps on me, and scratches me, and ohhhhhh….. It is just terrible……

At least I have like a permanent body guard. Him already showing us what his teeth is capable of. Killing a few of our chickens… So,beware,this mama has a Jack who protects her!

Jack, a weird dog, with a weird name, with a weird self appointed purpose.

Just like this, autism is not always bad. We find the funny and the reason to laugh in the silliest of things. Yes, our journey is difficult. Yes,I can probally supply the country with water from all my tears that has flown. BUT, as with any other journey, we also get to experience good times. We see the joy in the smallest of things. Somedays we laugh more than any negative act. There always is something to be happy about. There always is something to appreciate.

There always is a reason to smile.

And although it sometimes feels like we are isolated in our journey, there ALWAYS will be people who will stick to you no matter what your journey, and who loves you despite the challenges you are facing.

In my case, I have a very weird male called Jack, proven to never leave my side, no matter how dark my mood, no matter how big my challenges. He sticks to me like mud on dog fur.

We are not alone. Special needs brings isolation, but if you look past your feelings, you will realise that you also have someone in your life similar to my Jack, someone who will stick with you no matter what…..

Questioning our challenges

You think your live’s journey allowed you to feel and experience what you think is more than the average person experienced at this age, you think you basically know it all, felt it all, climbed the mountains, got hurt, survived downfalls, and of course experienced the best your journey can give…

After all, at our age, if they play golden oldies on the radio, you get excited, because its the the music you listened to when you were younger. You often catch yourself looking at photos from “back then”. And teenagers addresses you as Aunty or one of the worst words in the Afrikaans vocabulary :” Tannie”.

You think you are in the same league as the wise old owls…..

When suddenly your 6 year old asks you a question, that makes you realise that you know absolutely NOTHING in life….

That none of the years you lived could prepare you for the question that has the potential for you to question every year you have lived.

After one of the biggest sensory meltdowns my autistic son has ever had. My youngest came to me, frowning, speaking to me in a tone that belongs to someone my age, NOT a 6 year old. His whole body and soul screaming one big question mark.

Mom, why does God make children sick? Why is my brother sick mama?”

Time stood still. It was as if I literally froze. I can’t remember anything a few seconds after the question, that made ME question.

I most probably awnsered him on a level that he would have understand.I remember sound coming out of my mouth, my being not remembering the words connected to that sound. Although the moment was to big, to painful, for me to remember what was said, I know my words comforted my son, because we ended up playing shop-shop afterwards…

He was happy with whatever I uttered in my nicest mama voice. The mom in me did good. The human in me panicked….

I was left with a question I asked myself for many years, a question I thought I had overcome, but clearly didn’t. As if my soul burried the question for me not to hurt everyday that I live .

Why do I have a disabled child? Why can’t both my children live without every single day being a challenge for them? Why? Why us? Why my child?

Why does God make children sick?

The questions going through my heart like knife stabs, the emotions burning my soul like lava.

PAIN

After going through hours of contemplating about life, after lying awake speaking for hours long to our Heavenly Father, seeking for awnsers, I got up one day, feeling lighter. Still not having an awnser. But feeling lighter. With thoughts encrypted into my mind that made me sort of understand the journey of having a child with challenges.

Our Father telling me that what He has in store for me is NOT to break me. But to mould me according to HIS will.

I came to the realisation, that if it wasn’t for my son’s challenges, that I never would have found that I am actually a very strong person. Being a sensitive introvert most of my life, I would never evolved into the person I am today if it wasn’t for my and my son’s challenges pressuring me to become the fighter I am today.

Through my pain, the obstacles we are confronted with, I learned to step up, speak up, face my fears, and fight. Through what was what I thought was meant to break me, made me stronger than I ever thought I could be. ( yes, I know this sounds like a worn out cliché, or a over used Facebook status, but those who really know me and my journey will be able to testify that this is in fact truly one of my testimonies, that the heat of my pain melted and moulded me into a whole new version of me)

If it weren’t for the challenges we are confronted with, I wouldn’t have met some of my best friends ever. Some of these friends, not knowing them for very long, but the friendship, the connection so strong, that we see each other as sisters, not just friends. Their presence in my life, making my journey easier. For they are there for me when I am climbing a mountain, for they are there so we can relieve life’s pressure by having endless conversations, laughing our sorrows away. While many people ran away when I took on this new journey, I got sisters, sisters who I can run to and ask “why????”

Our challenges taught me to be thankful for the smallest of things, that although my life is not perfect, that we ALWAYS have something to be thankful for, our challenges taught me that the only boundaries there is, is the ones we set for ourselves….

Our challenges made my faith stronger than ever before. My pain, my challenges, taught me that I am not alone, that I am not being punished, but that I have a heavenly Father who loves me unconditionally no matter what. And that He will catch me when I fall, all in His good timing and place.

I still don’t know why children gets sick, I wonder If I will ever know….. But what I do know is, that, through the biggest storm, there always comes a rainbow, we might take a while to see the rainbow, but at least we know through the darkest dark, there always will be bright colours of life to admire and appreciate……

How to change a boy’s life on Mandela day

67

On 18 July 2018 the world will be celebrating Mandela day, by using 67 minutes of their time, to make a difference in the life’s of other. To honor a great man who loved children, and who changed the world for many.

Today, I want to give you the chance to do 67. Not a 67 that will take minutes of your already hectic day. But a 67 that will take you minutes, perhaps seconds. Instead of using time currency this year to make the world a better place.

Why not use a trading currency to change the world. Yes, you can literally change the world for our autistic boy. By donating any 67 currency. And by telling and challenging other to do the same. R6.70. R67 or even $67 or even €67 might not rock your world by donating it. But it sure will change the world and the future for our son.

We went against many that told us our journey is impossible, we went against our own dis believes, and we followed the words of Madiba”

“It always seems impossible until its done”.

We started the Family Hope Center journey. And with hard work and perseverance, our son is showing progress, and already is living a better quality of life, because of the impact the program has on him.

For our son to stay on this program, and for him to overcome the many challenges he is facing. He needs to visit the Family Hope Center specialists once a year. An 2 day intensive specialist appointment in the region of $5000. With that there is travel and other expenses. Coming down to roughly R120 000 in South-african currency.

We took on the impossible, we are busy showing the world that it IS possible to give our son the best possible quality of life.

BUT.

We need YOUR help.

This coming Mandela day. Make a huge difference, and spend your 67 in Rands, dollars or any currency, and sow the seeds of a future for a child who is dependant on the help of others.

For more information feel free to visit the Family Hope Center’s web page

www.familyhopecenter.com

Or contact me

marnekleinhans@gmail.com

Or for those who’s time is of crucial essence, kindly donate your 67 into our account. All funds goes directly to the life changing specialist visit.

Absa Savings

M.M Kleinhans

Account number: 9333564578

Branch code: 632005.

For international donations our PayPal account number is available on request.

Make your 67 the best spend this year, spend your 67 in a child’s future.

Owning the fact that YOU are a SUPERHERO!

So yesterday evening was a huge game changer for me.

My ultamite hero, a remarkable woman who has devied all odds, who’s child has made medical history because of her deeds, who is stronger than the hardest substance on earth, and who is busy overcoming huge challenges, most of the world would say is impossible to overcome, tells ME that I am HER hero.

(Thank goodness writing is an art form you can hide behind a keyboard looking like last night’s left overs. Because just thinking about my hero brings rivers of tears to my face.)

As a special needs parent, I sometimes feel like the biggest failure on earth. For so many reasons I know every special needs parent reading this has felt in their life. Most of these feelings of failure is better unspoken, for the neurotypical world does not always understand the feelings and the emotions of a parent with a disabled child. One of my biggest feelings of failure is, the feeling that I have let my child down. I carried him in my womb, and his whole life so far being a challenge, because of ME! Jip, that’s reality, this is something I personally battle with many, many times hitting rock bottom. And I know many special needs parents also gets moments like that. And then of course, I can basically leave one huge big paragraph open, for a special needs parent to feel, because some feelings is too painful to speak about, yet, although unspoken we all feel them.

Reading my hero, Anice’s message, a truthful, honest message, telling me that she admires me, that I am truly HER hero because of my journey with Autism. Shocked me. At first It was difficult to believe that this strong superhero of mine, thinks that I am worthy of the “H” word.

After my soul digested her message. I fell into a moment of deep thoughts. And I realised that maybe, us special needs parents aren’t the failures we so often tell ourselves that we are. Maybe we ARE worthy of being called hero’s.

You have a child with challenges, yet, you do everything you can for him/her. You survive endless sleepless nights, you travel far and wide for medical treatment, you try every possible therapy, you change your whole lifestyle to suit your child, you endure social isolation, you sometimes walk and talk for your child, you neglect yourself in so many ways, you set your self aside, so your CHILD can be comfortable, you overcome the unspoken emotions in silence,showing your child only a smile, your child never knowing that you are actually busy collapsing inside….

By only naming a few, this already makes us worthy of the “H” word!

And I came to realise that we must own the fact that we are worthy to be looked up to. Because we endure so much more than the majority of the population, yes, every family has unspoken burdens, but the journey of a special needs family is one that has the potential to break the strongest person. Yet, somehow we find strength to endure the biggest pain and to overcome the highest mountains.

Being the wife of a farmer, means that I have to endure lots of our journey alone. My husband working long, irregular hours. Especially when it is time to bale and produce food for the cattle. My children having to endure the fact that I can’t always tell them exactly when daddy is coming home. Them missing him immensely at times. For my two boys, their father is their biggest hero on earth. To them no one is as big and strong and fearless as their dad. Yet dad is also hiding behind a super hero charade sometimes, the special needs journey enough to break the strongest man. In silence of course.

I decided to make this superhero thing tactile to my children. To them they can’t understand why dad is busy producing food for the cattle for such a long period of time. And I decided to show my children who their dad really is.

At first I thought I am taking a long chance. But, surprisingly, even our autistic son who does not believe in father Christmas, the tooth fairy or even the easter bunny, who takes up thing very literately, BELIEVED me! I created this picture, and told them that it is a very big secret. But their dad only tells them that he is making bales and food for the animals. When in fact, he is fighting bad guys, therefore their dad is working such long hours sometimes. I even went as far as telling them that their dad hides his powerman suit under his seat in his tractor, and that that seat opens with a very special button, and only people with super powers is able to open it.

My children lived themselves into what I was busy spinning them. Me feeling very proud of what I have achieved. My children believing up to today that their dad is REALLY Powerman. Them thinking not only the world of their dad, but because of what I did, the whole universe. A while ago, my oldest was crying for his dad, when my youngest said to him :” don’t worry, pappa is only busy fighting bad guys for us. He is coming home soon. ” My son who was crying for his dad, a few seconds ago, suddenly got a new sense of admiration for why his dad is not home yet. His dad is Powerman. His dad is busy conquering the world for THEM!

When he he is actually really busy conquering the world for his children, his long working hours providing the funds for most of their everyday needs……

The most uncomfortable thoughts and feelings can be changed into something good, if we look at things in another way. We don’t always see our worth, especially when we are going through emotional storms. But, truth is, to those we look after, to those who know our really battles, to those who live our journeys with us, to those we really are superhero’s!

I came to the realisation, that every parent needs to own the fact that they are worthy, and that they are a superhero to someone in some way. For we literally overcome mountains for our children, we devie all odds, and we somehow find supernatural strength to overcome the biggest challenges.

I have put some of my hero’s together one one featured image, I need much more space to show of all my hero’s, this is just some of them, every superhero needs some recognition sometimes. To me they are superhero’s for various of reasons. I got regonised as one, I feel my fellow superhero’s also needs to get a big shout out from time to time. They are the worthiest of worth, yet their worth goes unseen so very frequently….

And if you are going through an emotional storm right now, and you need some tactile evidence to realise that YOU are also a superhero to someone, comment your email address, I will get in touch, and transform YOU in the superhero you are.

For every parent needs to know that they are a SUPERHERO!

Letter to my son fighting Autism.

My sensory overloaded child. Autism gripped you tight in his claws today. My child, completely overloaded by smell, sound, and the world as a whole. No one might understand you,but your mama does.

The day was long, the sensations too much, and at day’s end, you explode. The world may think you are naughty, the world might,not understand, but your mama does.

Your emotions heavy, your actions threatening to be violent. The world may want to use violence to discipline you, the world might not understand, but your mama does.

Calm words in return for anxious screams, open arms of re assurance in return for your arms throwing anything you can get hold of.The world might not understand you, but your mama does.

Into the storm we go, looking past your screams and violent attempts, offering you comfort and sensory stimulation, rejecting your attempts to unwillingly push me away, my love for you greater than your biggest storm, into the storm, I offer you comfort, until your body and soul accepts it.

Your storm has calmed. Your body at ease, your soul peacefully, your body relaxed, your best friend in your arms. The world might not understand you, but your mama does.

And if tommorow comes, and Autism takes it’s cold grip on you again, just remember, the world might not understand you, but your mama does.

Together we will fight every battle, and go through every storm, no mountain too big, no distance to far, the world might think we are weak, but your mama knows we are not.

The world may think our attempts are impossible, but your mama knows best.

Dear child of mine, first born, pride and joy. Our journey may not be what we planned,our journey may be tough, our days may be difficult, our challenges may be hard, our longing for a normal life may be painful, your need to be a normal boy might be big, your need to be accepted may be heart wrenching, the world might not understand your own unique way of communicating, or your somewhat unconventional way of life, but your mama does.

And one day, before you go to bed, you will praise the Lord in your own voice, you will thank him for the day that went past in your own voice,your steps to your bed will be calm, your emotions full of goodness, the frown you are wearing now, will be covered with a smile. Because the world might not understand, the world might not believe your wonderful capabilities,

But your mama does…..

Surviving the school holiday rollercoaster.

It is school holiday and I am freaaaaking out. Into the first week of the holidays and I am already feeling like a MOMbie that needs a permanent caffeine drip.

Our autistic boy that once was withdrawn into his own world living for anything farm related, is suddenly starting to show personality and getting attitude. Our once pre-verbal son, now communicating to me in his first and second language, and he is doing it with ATTITUDE! Only 8 years old, but in my mind I am FEARING premature puberty. Someone hand me a life time supply of happy pills and coffee, when he hits puberty. Just the thought of it seems like a script for the latest Scary Movie. Our youngest boy, with a shop keeping obsession at this moment, watching me with a strict eye for ANY thing I throw away, for he can use it in his shop.

In between working on my oldest son’s therapy, playing shop-shop with my youngest, and dealing with my soon to be teenager’s attitude, I am still trying to survive life. Not like big accomplishments, no, I am talking about like trying to get to my coffee while it is still hot, or getting dressed before noon. Not to even speak about trying to conquer the world for my autistic son, or maintaining friendships. Nope, mama conquering the world for her child, and having a meaningful conversation with my girl friends has to wait, UNTIL the school starts.

Friends, if you are reading this, no, I have not been swolled by a mountain monster or something, I am still polluting mother earth with the carbon dioxide I am breathing out.

When my MOM-brains can’t switch off, and I unvolenteerly lie awake since 4 in the morning, thinking about anything from a cure for stupidity, to how to make the world a better place, I can’t help to start reflecting on life. Thinking that although I am manager of my own mad-house, that I have many reasons to be thankful for the life I am currently living.

School holidays. Meaning my child is STILL in a school. That there is still a teacher on this earth who has enough guts to put up with my child for a few hours each day, while I enjoy a few hours of freedom. A teacher like my son has, is a blessing on it’s own. The synonym of cool, calm and patient. Striking a Qeeun Elizabeth pose while telling me with her heart soul, that she honestly can’t take it anymore, and that my son is draining her last bit of energy, but in the same sentence telling me that she loves my son, and that she knows that tommorow will be a better day….

My son tuning me, giving me attitude. This is more than a blessing than the burden it so often feels like. This is living proof that the therapy I am giving my son is WORKING! That there IS progress in my son’s development.

Running around like a headless chicken between therapy with the one, and playing shop with the other one….. Means that I am PRIVILEGED to have my son on this therapy program, meaning that we are BLESSED being able to have empty containers, which means we have food, and a house to prepare it in, meaning that I have my children with me, that they are mobile and healthy enough to manage getting around by themselves.

What feels to me like a school holiday rollercoaster is actually blessings, and privileges I am taking for granted. Lying awake at a crazy time of the night, feelings of guilt overwhelms me thinking that I feel drained about things that is actually a privilege to have, and NOT a right, and that it can be taken away from me at ANY time.

This also makes me feel the utmost respect for the warrior special needs moms that is conquering the home school journey. I honestly take my hat of for these parents. For I truely depend on my 4 and a half hours of freedom when my children go and grace their teachers with their presence.

School holidays makes me even more thankful for the word “me time”. Nevermind the words ” being productive”. This is words that is in severe danger of disapearing from my vocabulary if the school holiday keeps on for much longer.

Our journey requires me to try to do ANYTHING for my autistic child. And this requires me being on my phone for periods of times. During holidays I seek every gap possible for this action. Mostly I sit on my phone, when the children is sitting on theirs. But, my 8 year old, with signs of premature puberty thinks that I am enjoying a wonderful social life while gazing through the internet. The words :” los vir Irma uit”. ( leave Irma alone in our first language). Comes slashing down on my head the moment I open the world wide web in a quest to help my son. Yes, my dear Irma, all the way from Prieska, you have become a household name here at the Kleinhanse. For some weird reason, my son is thinking that I have enough time in my rollercoaster day to have endless conversations with you. There goes my “productive time”. Out by the window the moment the school bell rang for end of term holiday.

Me time” gets a whole new meaning during these times as well. I perfected the art of being productive and “house-holdy” , and giving attention to my own soul, so I don’t end up wearing a straight jacket and furry slippers in the nearest institution. Yes, while my children is having a rare moment of keeping themselves busy. I take the chance to rock me-time and productive time all together! Our windows never been so sparkly and shiny before. Holiday me time entails me washing windows while listening to Richard Clyderman. After a window washing session this mama feels like conquering her mad house again! My soul, the windows, good and clean and fresh tralala!

As strange as my holiday me time sounds. Every parent should do something once in a while that makes their soul feels good and fresh again. No matter how strange your me,-time sounds to others. You must take time for yourself, one just has to. Otherwise you will go bonkers. And you can’t pour from an empty teapot. You have to look after yourself, even if its in a small silly way. So you can look after your loved one’s again.

To all the mom’s rocking the school holiday rollercoaster, and even more to the mom’s rocking the home school journey, I see you, and I salute you. Now go wash a window or something, your children needs your soul to be in tip top condition!

°Disclosure: This blog post has been written over an estimated time of about 15 hours. While writing this post, I did various other tasks,which includes making 7 plates of scrambled eggs, playing shop-shop 5 times, having conversations about farming 4 times, was forced to tell one of our cats how cute he is 11 times, I sneaked an empty container into the garbage bin once, gave the dog water once – little hands thinking the floor needs the water more than the dog, I have done 5 toilet routines, did 3 sets of therapy, AND I played outside with my sons. ALL while doing this blog post!! I don’t call myself supermom for nothing!

Super mom’s out there! Good luck! There is almost 2 more weeks of this rollercoaster to go!!

Silent battles

Your soul tired, your body weak, your emotions overflowing, your heart yearning for a life that could have been, yet, know one knows this. You triumphantly hide behind a charade of super woman the ultimate mom.

No one noticing,or maybe even bothering to look deep enough to see your battles.

As parents, and I think especially special needs parents, we fight silent battles. Battles know one knows about, battles we won’t dare to expose to the public eye.

Because society displays life as perfect. No one wants to see or hear about a mom and her struggles, the world gets offended by reality. So we fall into the conventional way of living, we put on our fake smile, cover our dark circles around our eyes with foundation, and we post only the magnificent on social media. Laugh and the world laughs with you. Cry, and…….

No one wants to be alone, no one wants to feel inferior to our fellow man. So we jump on the band wagon, and we pretend….. But on the inside we are fighting silent battles.

Society has certain ways of acceptable behavior. Some things are imprinted into our beings through generations. When meeting with someone, usually the first words spoken is “how are you?” followed by, ” fine and yourself? “. Sometimes this word exchange end by the last question, other times it is answered by a ” good thank you”. This is what happens. This is what we say without even thinking. We are asking other people a question that has the ability to change one’s day, it is a question that as a fact has to be taken serious, yet, we spill the words, without sometimes even noticing that we are uttering them..

Imagine the effect it would have, it you REALLY mean what you are asking. If you are asking that question, with anticipation to LISTEN to the awnser. Imagine, if we had the boldness to awnser that question…..

The power of a person with an honest ear to listen, is truely underestimated.

Most of society only sees the child, only cares about the child, and his or her needs. Everyone only sees the child and the struggles the child is having. Barely anyone bothers to see the PARENT behind the child. Yet, society is easy to judge the tired looking parent with the saggy pants and just-out- of- bed -look. Not thinking, or even daring to ask about the unconventional appearance some of us so often portrait.

In my almost 9 years of being a mom, there was only ONE person who EVER stopped me in my steps, while rushing my child to medical attention. Young mother, with my youngest busy throwing up on me in the pharmacy, me getting advise for a condition I didn’t know was life threatening, I got the verdict to rush to hospital, I had my baby in my arms, soaking in baby mess, when she stopped me, looked me in the eyes, at that moment it felt if she was looking straight through to my soul, past my appearance, past the offensive smell I am covered in, and she asked me how I am doing? If I am coping emotionally? She asked, and she truely meant it. My awnser is something I can’t recall, the moment, the circumstances to big. But it made an everlasting impression to my soul. Nadine, from Watson and Brink pharmacy, bless you, for noticing my silent battles that day.

We carry heart ache, yet we smile, we see our children struggling, yet we praise them and make them feel like they can conquer the world, we get hurt by society, yet we turn the other cheeck, for everyone is worthy of living, we get bad news, we take strain, we endure emotional and sometimes even physical pain, yet we hide it. Because first of all, the outside world won’t understand our battles, because we want to create an euphoria of a life full of happiness to our children. We carry heavy burdens inside ourselves to protect us from the world, to keep our children from getting hurt. Feeling that no one REALLY cares or no one will UNDERSTAND..

This is my hand. What is above this image, is what society will judge me for. If it is long, perfectly manicured nails, society will think that I am well groomed, good looking, etc, etc… If society sees the way my hands REALLY looks, I will most probably be judged as clumsy, poor, and some will say that I am neglecting myself.

Because society strives on the beautiful and the positive. It is convenient to look past the WHY? It it is easier to just judge….

Some of my silent battles entails the fact that the top part of my hands is of such an image, that society will look away and judge. BUT to the person who DARES to ask why? Who dares to look past the appearance, and into the soul of these hands, will realise that these unconventional looking hands, has done years of hard work. Work to make the life of my children a better place, these hands has given medicine, wiped bums, dailed endless numbers of doctors, signed agreements of down payments on mecical bills, signed permissions for my children to be operated these hands have done it all for children who is completely dependant on the work these hands does. These hands have prayed to overcome the biggest, most unimaginable silent battles.

Yet, the image these hands portraits, will be judged…..

And so many of our body parts show a sneak peak to some of our silent battles. But for the sake of protecting ourselves, we hide under the fake nails, the foundation, and the instant smile, one often has to dig deep to put on convincingly.

In a perfect world. I would have loved it. If everyone on earth, would only ONCE ask honestly, with the intension to LISTEN without judgement. For this would make a huge difference in the world.

Perhaps, you that are reading this, perhaps, YOU accept my silent unspoken challenge, and YOU ask somebody today how they are REALLY doing.

For all of us is fighting a silent battle of some sort….

Being instruments in God’s hand. Honoring the instrument that started Raising My Autistic farmer.

My previous post honoured the man behind Raising My Autistic Farmer. Today is a very special day of remembrance, and I am blessed to be able to give recognition to the man who started Raising My Autistic Farmer, the brain child behind this blog. The instrument of our Father, the man who has been sent into our life’s to bring eternal change. For if you make a real big difference in our life’s, I am sure to flaunt your name on my blog at some stage, because those who makes the difference goes mostly unseen, but needs the highest upliftment for the deeds that has been done.

We were in our darkest hour, we were fighting darkness that had the intention to suffocate us, we were in deep….we were drowning. Our son’s Autism diagnosis dominating our whole beings.

Sunday afternoon, 17 June 2017. We were on our way to escape reality and to spend some family time in the veld. I was busy locking the front door, when a notification sound on my phone alerted me of a friend request. It took me 3 days to investigate this unfamiliar person’s request. Upon acceptance of this request

Our life’s changed FOREVER.

Our Father knew we were in trouble, He knew we needed a breakthrough, he knew we needed this man in our life’s.

We were living in isolation, our social media not reflecting anything of our situation. No one knew, except Him.

Hannes Viljoen entered our life’s with a phone call, and the most powerful prayer anyone ever had put upon me. A stranger became a brother, a Pilar of hope and support. A friend request from a stranger became the miracle our life’s so desperately needed. Our life’s forever changed.

The light became brighter, the hope became stronger. With each message, each phone call,each word of advise and wisdom, our blury visioned life became a future to look forward to.

With his help and support we ended up changing our Autistic son’s life forever. Us as a family getting our life’s back. Our future changing forever.

The hope and the ability to keep faith faded sometimes, sometimes our human nature and circumstances took over, and what was being built up, broke again. Sometimes we felt that this new journey that was a waving at us, wasn’t meant. Sometimes I crumbled. But then there was the man our Father had sent us, he gave us the encouragement to keep on believing, to keep on knowing that our Father will provide in our every need, and that we ARE destined for far more than what we were experiencing then. When I was about to throw in the towl, and ready to completely give up, Hannes was there to kick us in the right direction again. His words of wisdom, the encouragement for us to keep on going.

Because of him being a instrument in our Father’s hand. Our son has a future. He has shown us the direction for help for our son, he advised and supported us in many aspects of our life’s. Because our Father has send this man, we are removed out of the suffocating darkness, and we are starting to enjoy the sun rays of life. Yes, some days are still filled with obstacles, but we are privileged enough now to know that we don’t have to cross those obstacles alone. In difficult times, we know that we are working with a plan, that we are working towards our son having a future and an independent life one day.

Not only was he sent to us to change the life of our son. But he was also sent to be the instrument in the repair of a family, of individuals, who was busy breaking. Who felt like the most inadequate form of life.

Upon my attempt to tell our story on a fundraising platform. Hannes saw that there was potential in my fingers moving over a keyboard. And he encouraged me to start a blog. In one of my most uncomfortable moments, trying to do something for my son, our Father showed me the way to do something for myself. In previous experiences, I learned that it is very wise to listen to Hannes Viljoen. I listened. And I started

Raising my autistic farmer.

Not only do I have the absolute blessed privilege to say proudly that in the 8 months of Raising My Autistic Farmer’s existence, 1974 people across 21 countries has read my blog, and a renowned blogger from California contacting me, thinking that it would be a great idea if we colaborate some of our work….

But also

Have I been given the absolutely humbling experience of receiving letters and messages of people writing to me, telling me how this blog has inspired them,how my words give them hope and the will to go on in tough times.

Screenshots of pieces of the blog on people’s WhatsApp statuses, people quoting me, me,seeing my blog being shared across social media.

To me this is strange, it is something I am unfamiliar with.

My personality that of one who does not like praise or pity. My heart and soul KNOWING that all the recognition and oooohs and aaaahhhhs goes to our Father. For I am merely an instrument in His hands. That it is NOT me doing the writing, but Him, that I am only His instrument to put down the words that He wants people to read .This is an experience that I am not able to put into words. To realize that my journey, my pain, actually means something to other. To realize that I am not the inadequate mess, that my struggling journey told me that I am.

That I am actually worthy of greater things than just surviving. By this blog, I have found myself. It has given me the knowing that I am destined to far more than just to fight for survival. It has given me the knowing that there will be many more doors to explore and open, it is given me the knowledge that I am worthy.

Sitting. Thinking. Taking it all in. I came to the realization, that we truely serve an awesome God, who works in the most unexpected, most mysterious ways. And that He uses people as His instruments on earth to enrich the life’s of other. That although it seems like one is stuck in the darkest of darkness, that there WILL be a breakthrough at His timing and His place. And that He provides and shows the light to those who yearn for his saving.

Our family is a living proof of the wonders our God can do.

A wise man once told me to never give up, that the sun will shine again That our lives is not prolonged in anyway by worrying. That we must surrender all our needs, for our Father WILL provide.

Today we are blessed an proud to say that this man,has been used as an instrument,

To change the life of this boy and his family

FOREVER

If you would like to experience the life changing support that we got, please visit

www.brainchildfund.org

Maybe today is the day that your life changes because of visiting the above webpage.

And for music that touches the heart and inspires the soul, Hannes has a very talented wife who is making waves in the music industry, her story, her voice and her music, instruments to move the rhythm of any one’s heart. A visit to www.ziya.com will truely do wonders for one’s soul.

Never, ever give up, one never knows who or what our Father is going to use as instruments to break your darkness….

Giving honor to the man behind raising my autistic farmer.

I am not really someone to celebrate cliché, money making days like in example father’s day. Because each day should be a a day to celebrate a special person in one’s life. But, since the whole social media realm is being overwhelmed by father’s day anythings.

I thought there would be no better way or day to give honor to the dad in our life’s, the man BEHIND raising my autistic farmer. Never talked about, never seen, and only heard if he really, really has to. His worth totally unrecognized, but in his absence of the public eye, he is the backbone of the soul of this blog.

We grew up in literally different ends of the country, him growing up on a farm close to the Cango Caves, and me living the city life. Two complete different life’s, put together by our Father’s hand with a big plan and purpose planned for us. Thinking about how our life’s got turned upside down, so we ended up meeting, and then suddenly thinking about our names, which makes our life’s journey even more unexplainable and weird.

Is just a proof that when things seems like falling apart, it is actually falling into place. Our journey is a true reflection of this statement.

Our names made people frown, our journey and the things we do makes people often question. But through it all, we are able to get a few laughs in when thinking back to some incidents.

Marné and Morné. If I had a Rand to throw in a bottle when someone makes a comment about this, we would have been very rich by now. Our smiles comes from people asking us if we are twins, a doctor asking us if we got married because of our names, when trying to sort out something over the phone once, I had a very strange conversation with the person on the other side of the call about our names, and then, my dear college,back in the day when we were still finding our purpose in life and I

worked at a coffee shop in the Paarl, my dear college, calling me aside very seriously, telling me that she had some kind of vision that me and my fiancé at that time is actually brother and sister. Bless her for being concerned over me at that time. But oh goodness, we are able to have a few good laughs about the life that was chosen for us.

Laughter is good for the soul. And I am happy for incidents like that. Because when the dark times comes, we are able to look back, and smile, and know that although our journey may seem strange, that our journey is meant for us.

Him being the typical south-african Boer, with his own unique mindset, and way of doing things. He truely has to get an honary reward or something for putting up all these years with me, city girl at heart, who does not get distracted by his mindset or his love color Khaki. Who sometimes takes this Boer totally out of his comfort zones, and who is stretching his mindset at a daily basis. Our family busy conquering all odds against us, me trying and fighting and literally crawling a future open for our son, my husband, the Boer, being my backbone of support, and being the one who catches me when I fall.

And yes, he is probally going to moun and grown like the papa bear he is about “me putting our personal life’s on social media”. But sometimes a man of his stature has to be recognized, always there, mostly un noticed.

Here’s to one of the best dad’s on earth, and my soul mate who has lived through the best and worst with me, and still sticks to me like super glue.

Gelukkige vadersdag my skat”

(Happy father’s day my treasure, directly translated from words in the Afrikaans language, most typical Boers is only willing to speak)

And to all the amazing father’s out there, Happy Father’s day. May your dark days be filled with laughter, and may you be recognized for the amazing humans you are!

To every parent, It’s okay, to be NOT okay.

We live in a world where achievement and appearance is everything. We live in a world where social media is sparkling full of happy, perfect faces, where everything is good, where every mom is the super mom,where everyone’s social life is that of a celebrity. Picture perfect photo’s, high achievements, social gatherings, and spotless clean rooms, with images of THE perfect baking. This is the world we live in. This is what everyone sees, this is what everyone believes…

But what about that mom, that life that is not picture perfect. What about that family that has no social gatherings because of their special needs child, what about those parents who’s biggest achievement is to give their child the things he needs? What about the mother who wishes she could also stand infront of THE perfectly baked cake looking as if she just came out of a salon?

What about we take that mask of for once. And we all agree that life isn’t always perfect. That life happens,and so does sh!t. That life is NOT always the fairytale that everyone tries so hard to portrait. What if for once,we drop the act, and admit that life also sometimes consists of chewing lemons , and not always chocolates.

Yes, we all have victories and celebrations. And it is wonderful if you are smiling,and the world is smiling with you. But very few of us is daring enough to reveal that we don’t always just smile,that we also cry sometimes.

We keep showing our strong sides,we only speak about victories, we never speak about burnt flops, we hide our imperfections….

We tell the world that we are okay. While inside our hearts we are living a cold loneliness of NOT being okay.

Without ever thinking that by dropping our masks, we can actually make the world a better place. So many people feels inferior by the images the world portraits. Some feeling incompetent, worthless when looking at the super human race the world is showing others. We start to compare ourselves, we start to feel inferior, and eventually it causes low self esteem.

While all of this is really so unnecessary. We don’t have to throw one huge pity party everyday. But, I for one,know it has it’s benefits, of not pretending, of being honest about failures, of admitting that although I am blessed in many ways, I still have alot of pain in my life. Dropping that mask of perfection, may lead to other people to realise that they are not alone, and that they too can drop that mask once in a while.

That it is OK,

To NOT always be okay.

That it is okay to admit that we are busy falling or chewing lemons. By admitting, someone might just catch you or hand you a chocolate to replace the lemon.

Some people has the fear of :”what will the world think?” Some is scared of the opinion of others. Some is scared of getting hurt or being criticised. But, what is the use of keeping up appearances, when the truth somehow always has a way to get out? We all can wear a ton of make-up, we all can post the perfect,sometimes photo shopped photo’s. But eventually, one aren’t able to keep that cover for always.

I much rather get criticized for who I am, then for who I am not.

Life gave me lemons a while ago. And I ended up sick and bandaged. I was left with a discission, either I am going to let this challenging time in my life change my personality,or I can let the challenge adapt to MY personality. Changing appearances, holding up a mask, was NOT an option for me. I was not going to let my pain affect who I am. And since I literally live in skinny jeans. My skinny jeans had to adapt to ME. My beautiful jeans, got transformed to jeans with a slit in. Not to show of my legs, or to try out the “sexy” look. But to fit my challenge. The challenge was to fit over a heavily swollen, bandaged leg. I was not going to suddenly wear different types of clothing,just because I got hurt. As a matter of fact, I think the people who know me would have thought that there is something wrong if I suddenly started wearing skirts,or bootleg jeans. I wore my skinny jeans, transformed, bruised and all. I went on with life, as if I am wearing the most conventional garment on earth. I was being myself, I didn’t have to keep appearances up, I didn’t had to worry about feeling or looking uncomfortable in clothing that I don’t like. And I got through life for 2 months like this. I don’t know if people was just polite by not asking what on earth happened to my jean OR my leg, or if they are just used to see me in my skinny’s, and didn’t even bother to look down. In my case, it would have been difficult to change myself,and people for would have noticed something is wrong or different. No hiding behind clothing I don’t like, no keeping up appearances, no questions…. And by not being scared to show my imperfections, my hurt, I got through life easier….

By this experience, I learned that it is okay, not to be okay. Tha the world accepts one with flaws and all….

Life can’t always be perfect. We all are human. Non of us is some kind of special race with no imperfections, we all fall,we all have a wrinkle or two, we all have flaws. AND IT’S OKAY.

Today I want to tell that parent who never opens Facebook anymore because of feeling inferior to his or her peers, who sometimes feel like never reading messages anymore because it is one brag post after the other.To every parent who feels less, because of the image society portraits. We all are human. Masks fall, paint fade, and eventually the real comes to surface. You DON’T have to feel inferior, you DON’T have to feel less. You are on a unique journey, no matter what your circumstances, you, and your journey is unique, and you are special in every way imaginable. Don’t let the masks society is wearing make you feel less in ANYWAY.

And to those living the glamorous, sparkly life. How about accepting the challenge for being real for a bit, for admitting for a change that life HAPPENS, even if you are in the fortunate position of chewing the chocolates of life all the time? I can assure you, that dropping a mask, has many benefits, maybe just maybe you will experience a beautiful side of life you never knew..

I can already hear someone in the background yelling to me “that talk is cheap”. That it is easy to let your fingers type a bunch of words.

Well, as my shoutout to the world to admit that it is okay not to be okay, here is me not being okay:

Yes, your eyes is not deceiving you. It does not look like I have fallen into a paint pot, and YES, that is a wrinkle,

and YES my child’s face is dirty, us humans has to eat you know.

My mask, my image I portrait to the world is that of the world seeing me covered in one of the best inventions EVER called make up. Its my mask which I am not always able to hold on to, especially living with this special boy sharing the photo with me, one day or another someone is going to knock on my door unannounced, or one day I will have to rush somewhere without planning beforehand. And then my mask, my appearance would be gone.

My child isn’t always the cleanest, neatest gremlin there is. He likes food, he likes mud. And he HATES things touching his face.

Life happens….. And when it happens we must be able to be okay with not being okay…

Dear fellow parent, it’s okay to be YOU. It’s okay to stand up and say that you are on an uphill of life….

It’s okay, NOT to be okay……..

Blooming after almost breaking.

Living with Autism is a rollercoaster ride of victories, and down falls. The one moment you are celebrating a new word your child has said, the next moment you are doing damage control.

Although many parents of autistics tend to seclude themselves, and they very often keep their lives as private as can be, because of the fact, that so very little understands the journey of living with autism. The reality is, living with autism is hard, and it is difficult. Yes, somehow we manage to find supernatural strength, and patience, and somehow we are able to move mountains for our children. But fact is, although the majority of parents of autistics hide their pain, living with these circumstances is daunting.

I for one would never break down in the public eye. Mostly because I have found a new found strength and purpose, to inspire others through my journey. And giving up is not an option, not to hold up appearances, but because of my autistic son who is dependent on me to fight for him with my all. I fight, I struggle in silence, I fight some more, and if this journey is too much for me, and I fall, I have my soul mate to pick me up, and assure me that the light will shine again.

But, being strong all the time is impossible. No matter how strong your fighting spirit is….

A few days ago we had a downfall with our son. Sociable unacceptable, unempathetic, all those common symptoms of autism came out in one morning. And society gave us a big up hill. This up hill was very difficult for me, because it is difficult to experience these autistic symptoms, while we are giving it our all, fighting with our whole beings for these symptoms to be suppressed.

I reached a moment in time when fighting, falling, keeping it all together was just not an option. And, I totally BOMBED out for a few minutes. I just started walking, and walking, climbing a bit, and then I just stopped. I just had to remove myself from reality. To come to measure with things. A few minutes in the bush, and a deep conversation with my Father gave me my fighting spirit back.

On my way back home. The path I walked to get where I found my inner peace. Was such an resemblance of the road we are currently on. So much, that I actually went to my resting place again, to take in the fact that there is so much more than it, then just me running to peace.

My search for a place to find peace started walking over thorns. One of them actually sticking through my shoe and really hurting me. It reminded me of the figurative path we of autistics is sometimes on. Sometimes we are on a road that hurts. Sometimes we find difficulty maintaining our emotions, sometimes we experience pain, to get to the place we all dream of coming one day: to have our children healed. Us knowing that should something happen to us TODAY that they will be okay.

My search for innerpeace took me over some rocks. Some I had to crawl over. This reminded me, that our paths in life is so often filled with figurative rocks and obstacles. So very often, in our journey as parents with autistic children, we encounter difficulties. Sometimes these difficulties is so big and daunting, that we aren’t able to walk on this path upright and strong, sometimes we bend in life, sometimes we can’t help but to loose our inner strength, and go crawling on the journey of life.

But, as special needs parents, we find the strength to endure the pain of the thorns on our road, we somehow find the sense of endurance to climb the rocks that is sometimes thrown on our paths of life.

We find an unexplainable strength, and no matter what, we manage to keep getting up, keep being strong, for those who is dependent on us…..

My urge to find a moment of inner peace let me through thick bushes. Encountering one of my beloved cats along the way. This reminded me, that although it so very often feels like we are alone, that we are on this difficult, daunting journey of autism without anyone besides us. That there IS people who loves us, who care for us. They might not be our “specie”. (I often think autism parents can be classified as a specie of their own. Because of the unique journey we are on.) But still we have people who cares, who supports, and who tries to understand our journey.

Thorns, rocks, and bushes. My journey gave me peace. I ended up staring at an Aloe.

And suddenly the Aloe reminded me of myself. Or maybe perhaps any special needs parent in a way. An aloe, living in a bush, it’s surroundings somewhat harsh, surrounded by thorns, bushes, open to whatever the elements may bring. In the summer, it survives the scorching Karoo sun and drought, in winter, it survives the icy coldness that is multiplied by the fact that it is situated close to the Swartberg mountain. Yet, the aloe never breaks, it never dries out. It manages in someway to stand out proudly no matter what it’s situation is. No matter what life throws at it, it still manages to BLOOM. Rough around the edges to protect itself, bitter, fragile-like on the inside. Yet, still one of the most majestic plants there is.

We are situated in something that might be considered not the perfect situation, life throws winter storms, and fiery hot difficulties at us. But yet, somehow we manage to stand tall above our circumstances. Some miraculous way, we still manage to bloom, even though we sometimes have to be rough around the edges to protect ourselves, and our special children, even though, deep down inside we are fragile and bitter……

Living with Autism is everything but easy. But it sure has rewards of its own. On my journey of being a special needs parent, I have encountered many difficult roads, I had to climb some of those roads, the burden too much to walk up straight. But, I can surely tell, that my difficult journey gave me the opportunity to live and to experience life in many unexpected beautiful ways.

I may be struggling sometimes, but just as the aloe, I will be blooming one day, showing the world that one’s current situation, or what life is throwing at the moment doesn’t determine your whole life, that it IS possible to bloom, even after surviving the unbearable……

Behind the scenes of Arms of Mercy. Changing the world one bracelet at a time

When one’s child is born, one is most of the time able to provide for the child you are given. Although sometimes you don’t have heaps of everything, you know you have, to give what your child needs. It is every parent’s privilege to provide for our children to their every need. Them being completely dependent on US.

This is the aim of every parent. This is what we are wired to DO!

But, no one can plan their life’s the way they want it. And sometimes life throws you curve balls in life, that one simply can’t conquer alone. It is then that we as parents are forced to seek and ask for help. For our children are dependent on US to do the seeking and the finding of help.

You find yourself praying. Hoping believing. Believing in miracles, asking for God’s mercy, holding on to His promise that He will never fail you.

We had the dream of the “perfect” conventional family. We had dreams of working hard, providing for our children’s every need. But, life is unpredictable, and it forced us to break loose of our sense of pride, and it gave us no choice but to admit the fact that we alone aren’t able to provide for our child’s every need. At first it is the worst feeling of shame, but, for your child you have to swollow your pride, and find it in yourself to adapt an attitude of :” I have nothing to loose except my time, and maybe a bit of airtime along the way.”

Seeing an advert on Facebook about Arms of Mercy. Not really knowing what they do, just feeling inside my heart that this people might just be the awnser to my prayer. I swallowed hard. And I wrote THAT letter to Arms of Mercy.

Never in my life, would I have thought that not only we would get financial help, but also true friends. A simple letter, to an organization changed our lifes. A letter became a WhatsApp, a WhatsApp became phone calls, and phone calls....

It became the meeting of two of the most amazing people I know. Karin and Anton Harmse. These people are the true meaning of humbleness, although they are worthy of wearing crowns for the amazing work they are doing. Upon our meeting, I was armed and prepared, I had a whole submission worked out, ready to impress people whom was seen through our eyes as very important, need to impress kind of people. But, we were wrong. Karin and Anton is two of the kindest, most caring and understanding people we have ever met. My whole speech, my whole submission going down the drain upon meeting them. It wasn’t necessary. For they have hearts bigger than the biggest mountain, for they truely understand when parents has to admit that they need help.

We searched for help for our son. We got help and so much more. In my searching for help for my son, life also gave me help! It gave me a true and honest friend,Karin. A woman of God, who helped me endure some of my challenging times. And NO. I am not using the honey brush, knowing that they are going to read this. Not at all. Because every parent on the Arms of mercy program will be able to testify of my words of appreciation.

Karin has many children which she and her team is helping, making bracelets with their own hands, with their own time, whilst also juggling a career and a family life of their own. BUT, she treats you as if you are her ONLY project, she makes you feel that YOU are the most important thing at that moment in time. She comforts your soul with her words and her support. She was one of the persons that taught us that it is OK, to ask for help…. She deserves to wear a big sparkly crown,and to flaunt it! I have not communicated with the rest of the Arms of mercy team yet, but I am very excited to. Because I know everyone of them will have the beautiful, extraordinary characteristics that Karin and Anton has!

Our search for help became BEAUTIFUL! Literally BEAUTIFUL!!!!!

I was stunned beyond words when seeing the blessing Arms of Mercy is going to spread through our son, Nickholis’s life.

Arms of mercy is changing the world one bracelet at a time. By selling these bracelets countrywide, and I think if you ask very nicely even world wide. Each bracelet only costing R30 each. And the proceedings going to the help and rehabilitation of our Autistic son Nickholis. We are truely blessed and thankful for this God given opportunity and glimpse of hope, to help us, where we just can’t provide alone anymore.

Although it sometimes feels like we are the only ones on earth fighting battles that is far bigger than us, there is also other warrior parents. Fighting for their children, there is also other children having the honor of bracelets made especially for their situation.

The majority of us, knowing the story of Mienke Mulder. Who choked on her milk while in the care of a day mother…. Who defied all odds, and is currently on the road of recovery and rehabilitation. Needing a tremendous amount of medical help and therapy.

Then there is Keanu. A super hero in his own right. His small body fighting Neuroblastma Cancer. The only treatment that will safe his life costing millions of Rands. Their parents fighting harder than anyone I have ever heard of to heal their son and to give him the future he deserves.

Divenette deserves to be wearing a crown of flowers on her head. She is a true fighter. A bursted appendix, which had severe side effects, causing her to undergo 15 operations, excruciating pain and trauma, her medical fees piling up as we speak..

Princess Mihla. Who is diagnosed with a very rare type of cancer, cerebral neuroblastma. A beautiful girl, with the dream to start her grade 1 year in 2020.

Dané. A true miracle child, defining the odds of her Spina Bfida diagnoses. She underwent various operations and tests, and is currently under 24 hour home care. This princess defied the odds by even started laughing.

Rhyn. The boy who’s eyes speak a million of words. A brain tumor was found, and the doctors gave him 6 months to live. Their is a possibility that he has to get medical treatment overseas…

And then of course. Our son. Nickholis. After 8 years of struggling, we finally got the Autism diagnosis. We searched far and wide, and got help from the Family Hope Center in Philadelphia. The specialist visits to them, and his other medical requirements far more than we alone can provide.

Arms of mercy is a non profit corporation, who aims at changing the world one bracelet at a time. They are DEFINITELY reaching their aim, their help and influence, literately changing lifes.

Please support this worthy cause. By helping them, to help children in desperate need.

Please visit their website for more information on the organization as well as on each child, or to support by purchasing these unique bracelets.

www.armsofmercy.org.za

Words in honour of Liam, Ori, and every child who got their wings.

Growing up as a child we often visited my Grandmother’s grave in a cemetery in Johannesburg. Not only was this an experience to go and get tactile closure of the passing of an amazing woman whom I only knew about 8 years of my life. But it was also an experience of coming to terms with death. Not only death, but the passing of children.

At an early age, I got to experience an unexplainable sense of attachment to people whom traded their life on earth for that of the eternity. On route to my grandmother’s grave, we had to drive past the mass grave assemblemt of the Westdene buss tragedy.

Our mother only telling us briefly about the incident, not understanding completely what it is all about. Just knowing there is children who got their wings. I remember often just staring at the graves, with one always standing out for me, the one of the boy who saved a lot of his class mates, but on his last attempt of saving someone, he even was taken away by the water, to his eternal home.

As a child this sense of attachment came from being a child, seeing the final resting places of children. It didn’t influence my emotions, it didn’t bring deep thoughts to mind, but still there was this unexplainable sense of empathy.

All grown up. I got my first taste of heart ache when those feelings I experienced as a child, turned into hurt. Watching a program on television about the Westdene bus tragedy. When suddenly, you don’t feel for the children anymore, but you feel for the PARENTS of those children. Suddenly the attachment shifted. Suddenly the emotions I didn’t understand as a child turned into pain.

Without knowing the parents. Without knowing their circumstances, their hearts, or even their NAMES, you still FEEL for them, in the most unexplainable way.

Parents, of all walks of life are connected. No matter on which road of life we are, no matter what we are given in life, we all have one thing in common, and that is the love for our children, and with that goes the deepest of empathy for other parents. For only a parent knows the love a child brings. I could never in my whole life imagine that one could love another human being like one loves one’s child.

Nothing in life is guaranteed. No one knows what life will bring, no one knows what tommorow holds. We try to live the best we can, we try to take care of ourselves,and we try to make our journey of life the safest one possible. But. No matter how good, how healthy, how safe we try to be, we can’t hide from the inevitable fact that we are not immortal.

We all know this. But what if the unspeakable happens. And God decides to give wings to the human being you love on earth the MOST.

This is a reality that I was confronted with 6 years ago, when my whole being revolved around this question “WHAT IF???” Waiting outside the theatre, for our youngest son to endure an emergency operation. His life depending on the procedure. The surgeon informing me beforehand of the risks involved.

All alone, giving my 8 week old baby over to human beings, out of my arms, into their arms, seeing the theatre door close, taking a last glimpse of my baby boy,fighting for his life, not knowing that if that theatre door opens again, that it will open with the sight of my son.

What if???” dominating my whole body and soul for 4 hours on end. At stages waiting at that door, it felt like I was going to stop to exist, my body, my inner core not able to deal with what is going on at that given moment.

My “what if”. Turned into ” thank you’s “. Thanking the Lord for each day I get to live with my son.

To some on this journey of life, the ” what if??????”. Turns into a reality they simply have to cope with. Some parents get confronted with the reality that they must accept the fact, that the theatre door will never open, that the medicine will never work, that the wounds wil never heal..

That God has a timing for everyone one on earth to get their wings and soar to the eternity.

Reading about people’s journeys, seeing it on television, experiencing the impact it has on the human soul to see a child’s grave…

Does not nearly come closely to FEELING for people on this journey.

This past few weeks. My heart stretched in ways I never thought is possible. Although I had experienced pain, attachment, fear of loss….. NOTHING could have prepared me for what my heart has allowed me to feel.

I have loved in only a way a parent can love,but for the first time in my existence, I have felt a small fracture of the pain a parent also can feel. I learned that that love,can bring also the most unimaginable sense of heart ache .

In a time span of round about 3 weeks, I got to feel emotions of mourning.

Not of my own child, but 4 children given to parents who had the privilege of feeling their love, who had the privilege to experience life with them.

Katlego, an Autistic angel whom only got her voice AFTER she received her wings,

Liam, a little blond haired boy, with the most beautiful smile I have seen in a long time, who’s journey wasn’t meant to cross ours,but who had a huge impact my life, a boy whom we started praying for with each message we got, when hearing about his battles,

Ori, baby boy with the biggest eyes. The synonym of cuteness. A special needs boy, who had the best parents possibly. Who’s journey on earth, was BETTER because of what his mom did for him. A boy privileged enough to experience the love of a mother, who literately did ANYTHING for her child she possibly could.

And a mother, with the name Rochelle. Only reading about her loss, only knowing that her child and Ori got their wings the same day… Our paths never crossed. But the feelings towards her the same as towards any of these parents mentioned.

Human beings who’s life’s was shorter than the conventional life expectancy span.

Shorter than expected. More POWERFUL than ever imagined….

Children whom had a special purpose in life: to touch the hearts of those still wandering on mother earth, to inspire those who stays behind,by their unconditional love. Kindness,and fighting spirit. To leave long lasting footprints in the life’s of those whom they touched directly and indirectly.

This has made me feel an unexplainable amount of pain. The severity of these feelings almost forcing myself to dare utter the words “empathy”.

In this case I have no right to even let the word “empathy” come to mind.

Because although I have a strong sense of attachment to anyone who ever loved a child, although I have sensed fear at it’s worst,

I HAVEN’T WALKED IN THEIR SHOES, I HAVEN’T ENDURED WHAT THEIR SOULS HAD TO ENDURE.

It is times like these when words are difficult. It is times like these when I wish I could just send these parents a blank message, knowing that they will feel the heart that has sent the message.

Because I am a firm believer that words coming from an unemphatic mouth, words written by an unemphatic hand, does not really mean much.

Although the soul of those organs spreading the words, is doing it with the best intention possible. Trying to comfort in the best way they can imagine possible.

Sometimes words coming from people who haven’t lived what one has lived, can sometimes come through as insensitive or hurtful.

Everyone wants to comfort, wants to try to heal, not always knowing how to because of the lack of empathy.

That is why I wish I can just give a blank canvas, a blank message, and let the receiver feel the words my heart wants to spread, but is not able to project into sensible, meaningful, healing words.

To all the parents who’s children got wings before they did.

To all the parents whom the words “what if????” got reality to it,

to all the parents who has felt the unexplainable…..

And burning in my heart at this moment: Katlego’s parents, Ansje and André, Gugu and family, Rochelle and family, here is my figurative blank canvas, here is my blank message to you, one I am not able to put into the right words, but one I know you will be able to feel. One parent to another:

I FEEL.

What a special needs mom REALLY wants for Mother’s day.

Mothersday. A day, ONE day which mothers get recognised. An opportunity for anyone selling anything to make a few extra rand. An opportunity for every marketer to test their skills. A day where even the smallest child is motivated to go ask dad,or even MOM HERSELF for money to go buy or make mom something. Because society says so,because the television, the papers and even social media says so. My outlook may be misunderstood, and I know some people especially in the industry gaining from mother’s day might feel negative about this statement.

But if you have truely walked the road of a special needs mom. You will be able to justify my feelings towards any day, in which a person is only celebrated for ONE day. ONE day a year, a mother gets appreciated, ONE day everyone falls over their own feet to try their best to let mom feel appreciated.

It is wonderful to recieve, it is wonderful to feel appreciated.

But why can’t there always be specially wrapped mugs and candies, flowers and teddies displayed in shops? Why can’t one walk into a grocerie shop at ANYtime of year, and grab something special for the mom in their life’s? Why does society make a big fuss of mom only ONCE a year? While mom makes a fuss of her family the WHOLE year? Mostly neglecting herself in the process.

Although nice to be part of the conventional celebration of moms once a year. And being grateful for it. I came to the conclusion in life that earthly things perish, it doesn’t stay forever, its purpose only serves for a while. Flowers fade, chocolates gets eaten by the children who gave them, and having small children in the house…. Mugs break….

Walking my journey. My perfect mother’s day gift is something money can’t buy. Yes, money makes the world go around, and yes, to get my perfect mother’s day gift one day, I need trucks full of money.

BUT, to me, and I know to any other special needs parent on earth. Our PERFECT gift would be a healthy child. This is the only gift on earth I long for. Flowers makes one smile, a card makes one feel appreciated. But, knowing one’s child is OKAY. Brings one’s heart to peace.

If I can have ONE gift, and never ever getting any gifts ever AGAIN. It would be the gift of knowing that my child is healed. If I could wake up on Sunday, my child walking into the room,speaking fluently, behaving like any other, knowing that he is in a mainstream school, knowing that he is independent of me, knowing that he has a future. That would be the ultimate mother’s day gift. This is the gift my heart longs for. This is what I want and need. My child does not have to be wrapped in fancy wrapping paper or covered by pink lint. He can just be healed. He can just be OKAY.

At this moment in my life. I am worried. I am not only hoping,praying for my child’s health and safety. But also for my OWN. Knowing that if today was my last day on earth, my autistic son would be left in despair. Having the most amazing husband and father for my child, still doesn’t change the fact that my child needs me to help him to be independent of us one day. At this stage of my life, I am the main one in the family who is contributing to our child’s future. I am the main one in charge of our child’s rehabilitation. I am one of the pilars holding his life together. There is this cliché that says:” no one is irreplaceable “. But try to take away a special needs mother out of a home, and suddenly that cliché so many likes to use becomes an empty statement. If my child was healthy,I wouldn’t necessarily would have had to worry so much about my own health than I do. Yes, any mother is a pilar in their home, and yes, every mother on earth has a huge responsibility towards their family. But being a mother of a special needs child, increases that responsibility profoundly. Sometimes, I think, if I just could have my perfect gift. If I could just have a healthy independent child. Then maybe the pressure on myself, the worries I carry within myself would be less. Knowing that if our Father was taking me to my forever home TODAY that my child would be OKAY.

My view on days like these is DIFFERENT. Because I live life differently. I long for a gift that some take for granted. That some people has,and probably never notices. Having a neurotypical child, is a gift by itself. Having a special needs child is also a gift, in so many ways only a special needs parent would truely understand.

I might not get my ultimate mother’s day gift this Sunday, and I MIGHT be privileged enough to celebrate this day the conventional way. But, to me, I have been celebrating a few mother’s day MONTHS. All by myself of course, in silence of course. Because the majority won’t understand.

The past few months I have been receiving gifts that is contributing to that one ultimate dream gift.

Seeing my child develop, a new word, seeing him behave in a social acceptable manner, his teacher praising him, him coming home from school with artwork, my 8 year old coloring in the lines of a picture, GETTING A HUG FOR THE FIRST TIME EVER,chim FINALLY starting to be able to use scissors, getting a gold star for good behavior! Testing my child, learning that his brain function INCREASED!!! Now THAT is GIFTS! THAT is celebrating! That is mom having feelings of gratitude, of worthiness! THAT is mom having her own mother’s day celebration by her own, secluded, in her own heart, because so very few understands.

And then, there is also people who contributes towards mom having mother’s day MONTHS. Those giving support in various ways, those who gives gifts that is contributing to mom recieving her ultimate gift one day. Messages, acts of kindness, gestures,donations towards medical treatment, emotional support, gestures that might be small to the person giving it, being HUGE and life changing to the mother receiving it. Those are gifts appreciated much more than the conventional once a year sparkly paper and lint covered gift. That is gifts that becomes part of our life’s as special needs mother’s. Those gifts are forever. It doesn’t perish or breaks. Gifts that touches the heart, or that changes the faith of a child, those are the real gifts a mother, and even MORE a special needs mother appreciate the most.

Some of the most appreciated gifts is very often not tactile. A hand in true friendship, a shoulder to cry on, someone who is THERE no matter what. Gifts does not always has to cost money, because money can’t always get one the gift one ultimately longs for.

Here’s to all the mothers. Fighting battles in silence, having secret wishes about ultimate gifts,having fears one does not dare to speak about, living life’s revolving around their families.

May each and everyone not only celebrate mother’s DAY, but also mother’s MONTHS!!

In remembrance of Katlego. The Angel with no voice.

Kissing my Autistic child goodnight on his forehead, after praying with him for our Heavenly Father to keep him safe, to protect and to hold him,switching the light off, looking at my son for one last second before I leave the room, not knowing what tommorow, or even perhaps the evening will bring. Thankfull for yet another day that I was given with my child…

When a sudden notification on my phone, changes my whole being. From feeling loved and grateful for a day spend on earth, to feelings of absolute destruction and heart ache. Walking down the passage, cold, empty, full of questions and pain.

Reading that the body of the missing Katlego aka Jojo has been found….

A message that hit home harder than I ever thought was possible.

Autistic, non verbal, a beautiful misunderstood soul, taken away by the hands of a human….

Being a mother of an Autistic son, made this very real for me. It awakened emotions and fears, it touched my inner soul, knowing the challenges of an Autistic child, feeling almost if it is my own child who was so wrongfully harmed….

Finding myself next to my child’s bed, for the second time praying for his protection, staring at him, thinking how precious life is….

Finding myself in a difficult mindset of sadness, anger and heart ache. Not making sense of what happened… The strange feeling of attachment lurking around….

One can’t help to feel for someone who is on the same journey as you are. Who felt, and who dealt with the same situations as you have.

Autistic people, people with disabilities, can so easily be misunderstood, be rejected by society, emotionally, or even physically harmed, not being seen as worthy, not being seen as value to society,

Not being seen as human beings with feelings, thoughts and dreams…

Just because they don’t speak, does not mean they don’t have anything to say. Just because they sometimes behave in manners the majority of the population might not understand, does not mean that they are disruptive or of less value.

Just because they aren’t always as able to respond to certain situations, or act in a socially acceptable way,

Just because to some they are

seen as less of a human

Does not mean we have the right to hurt them.

In fact, they are the part of society who needs the most love and attention to reach their full potential. Because every single disabled person on earth has a special gift, has potential,

HAS THE RIGHT TO LIVE…..

Although the journeys of people with different abilities may look unconventional, and strange to those privileged enough living normal lives, they are still on a journey of life. Experiencing life in their own unique way, feeling, loving, experiencing life, just as each of us does.

People with different abilities may sometimes be looked as, as burdens, as unworthy. But if you take time to look closer, take time to look past the inability to speak, past the somewhat awkward behavior, past the image that society so frequently rejects. Then you will see the soul behind that different ability.

You will find that there is also a human being hiding inside a body that is unique.

Each and every special needs person on earth has a gift to offer. Some changes the life’s of their family and friends with their unconditional love, some has astonishing mathematic skills, some has the ability to become our generation’s next Pablo Picasso, or even the next Mozart…

Some like my son has the ability to find and track direction like one can never imagine, my son has helped me numerous of times from us not ending up in Taiwan when I actually was just looking for the right turn off… My son truely got the gift of direction. When that gift was given out, I honestly didn’t even knew there was a queue… My son is not yet able to speak in a way that he could be a TV presenter, and he struggled for most of his life with the inability to speak. BUT, he surely safed his mom a few times from ending up in the unknown….

Some gives us the gift of patience…. During the first few years of my son’s life, he taught me that I have a lot more patience then I ever thought was possible. Because yes, reality is, life with an Autistic, or any different abled child is difficult, and us as parents doesn’t get a special preparation course or something for the life of having a special needs child. No, you fall pregnant, you have dreams and aspirations, and suddenly, SLAP BANG, your life comes crashing down like a ton of bricks.

So yes, ton’s of patience is a gift my son gave me. And it is a gift that grew as the years went by, and this gift I am able to use in other aspects of my life as well…

No matter how big, or how small gift it is, each different abled child has something unique to offer the world. Everyone special in his or her own right.

Different abled people also deserves to be seen and be treated as equal of the rest of the society, we all are human beings, we all are created by the hands of our Heavenly Father.

Just because some are more abled, more educated or even more privileged than other, just because everyone does not have the same status, or lives in the same community or lives the same life’s. DOES NOT MAKE THEM LESS.

At the end of the day, each and everyone is on a journey that our Father planned for us. Some of us might not yet understand our journey, some of us might not always feel happy with our journey, some might not like the scenery while on their journey, but we all are on a journey that is meant for US.

And NO human being has the right to judge, or to think less of each other’s journeys.

We all are human beings, made with HIS hands. Put on a certain journey with HIS hands, steered by HIS gracious hands.

Us as human beings has the obligation to use OUR hands to protect and hold those part of society who’s journey is that of being different abled.

NOT to hurt them.

My plea today is for everyone to love protect our different abled society. For they are special and loved in many many ways the majority is not able to see.

An angel without a voice got her wings….. misunderstood, her worthiness not seen.

REST IN PEACE KATLEGO

For many of us still on our earthly journey will make your inner voice heard.

You will NOT be forgotten..

Learning to count blessings

Getting up in the early morning hours, in the cold, on a day the whole family is off, to get myself some coffee, complaining to myself that I am still tired, that I am cold, that if I don’t make this coffee now, I might not get a chance today to sit by myself and actually drink a hot cup of coffee. Negative thoughts surrounding my whole being, complaining to myself, wishing I stayed in bed. Thinking of the day ahead. When sudddey the thought comes to mind. That I am privileged to do what I am doing. I am complaining to myself about what some other people wish for. I am taking life for GRANTED.

Getting up from a warm bed….A while ago, my doctor was very serious when he said that I am in big danger of getting my leg amputated… Getting up, walking. One does not think about it. One simply does it. I can’t explain the severity of thoughts, of feelings of gratitude being able to get up,and actually WALK, when a while ago, I was told that I might not ever be able to do it again. Getting up and WALKING is such an amazing GIFT. One we take for granted EVERY DAY.

Making coffee… There is so many homeless people, so many people living in severe poverty….

Feeling cold. Up to very recently, my autistic son weren’t able to feel sensation on his skin. He weren’t able to feel COLD. In a very unconventional way of thinking, I realise that I am actually privileged to feel cold. It means that neurologically I am fairly on the well side. So many people, especially with Autism is not able to feel that sensation…

Complaining to myself about what I can imagine is going to be yet another jam packed day, my family, MY SON, keeping me busy the whole day….. Yet again I feel bad thinking these thoughts…. There is so many people out there who wishes for a family, or who has lost theirs…

Some days my life feels like the worst ever. Some days I can’t help but to feel like life hates me. Staring into my own circumstances…..

NOT REALISING HOW PRIVILEGED I AM.

I had the biggest dreams. Living the big city life But life took it’s course. And our heavenly Father planted me where He needed me, in the circumstances He knew I had to be. For me. This sometimes brings on more negative thoughts than is right in the eyes of our Father. Human as I am. I tend to be very unthankful.

Sometimes the long distance we live from town burdens me. Sometimes I long to sit in traffic, sometimes I long to experience the city rush. Sometimes the wide open spaces gets to me. Sometimes the quietness, the sense of NOTHING going on in all four wind directions, the long gravel road, the NOTHING gets to me… Sometimes the fact that we have solar power and I can’t use two appliences at once FREAKS me out. But, when my pity party is over. I feel ashamed for being human.

Because, I am actually privileged to be planted where I am.

My children has clean air to breathe. I read daily about the air pollution in the city..

My children has wide open spaces to play in. My Autistic son can let his emotions out without a neighbour thinking we are somekind of cult, or abusive parents. We can live in peace. The silence, the wide open spaces, is more medicine to the soul than it is damaging. My children is living a better, more peacefull, cleaner, safer life then I had growing up. This for one is something to be thankfull for.

Sometimes seeing, hearing other people’s children sucseed, flourishing in life, achieving the one after the other achievement. Really hurts. Not because of jealousy, but out of a mother heart, wishing life could have been different. Wondering why life gave us these mountains to climb. Longing, wishing it could be our child on stage, on the sport field, reading a book, singing a song…. While our child at 8 and a half years old has the brain function of a 3 year old…. One sometimes can’t help to be overwhelmed by negative feelings. One simply can’t help not being thankfull ALL the time. BUT. This negative feelings comes from yet again staring in our own circumstances. Cramped up in our own box of negativity. Looking OUTSIDE our box. One quickly yet again realise that we actually HAVE alot to be THANKFULL for. Outside our little box of pity, is people who long for what we have. Outside my little box of pity is parents longing for a child running around like a dog biting everyone’s ankles… Our human nature is causing us to be ungrateful for things other people WISH for. While I am wishing that my hyperactive child will finally go to bed, there is a mother who frequently wonders how the Lord is going to come and fetch their severely brain damaged son… While I am feeling negative about my autistic son hitting me without any empathy, their is a mother dreaming of her son holding her hand, longing for his touch in anyway. While I am being ungrateful, there is people who would be happy to have what we have… While we are sometimes wishing we had the perfect conventional life….

Admitting this, admitting our human nature, makes my head bow in shame. We have so much, yet we complain. Sometimes our life feels like the worst EVER. And then I think outside my box, and thankfulness and shame enters my heart again.

I don’t have it all together. Sometimes I might sound like a motivational speaker on happy pills. But because I have less in life, makes me appreciate the smallest things in the most extravagant ways. After hearing you are about to loose a leg, after not being able to walk on it for a month, and then suddenly, one morning you wake up, and you don’t feel pain, and you can walk, and you realise you gained something back you were on the verge of loosing, after not hearing your child cry or speak, for years on end, and suddenly hearing him babbling without stopping, THEN you appreciate things MORE. THEN you start to be thankful for things we often thinks as it is our right to have, or the things we just assume will always be there. THEN you appreciate every step, every sound, every MOMENT of life.

Getting up is a gift, breathing is a gift, just the mere fact that we are able to read this is a GIFT.

In my life I have learned to count my blessings second by second by second. Knowing that every step,every cold shiver,every centimeter of gravel road, every moment my child babbles, every friend who makes me smile and laugh, every second I feel exhausted from giving my all to my family, IS A GIFT, and that not one moment or one action should ever be taken for granted.

Because, although it doesn’t feel like it sometimes, I am privileged, I am blessed. And I have A LOT to be thankfull for.

Maybe we should look past the daily challenges of life, and appreciate what we have. Maybe we must learn to see the beauty and the privilege in every moment in life.

Using our gifts wisely….

In my quest of healing my son, trying my all to give him a future. I sometimes make mistakes. And today was definitely one of them.

All I want is my child to do good in school, to be happy, to live a normal life. And therefore I tried everything possible. We have been to specialist after specialist,tried medication after medication. After 8 years of searching for help. We finally found help from the Family Hope Center. These people are amazing. And they gave me a therapy plan to heal our brain injured son.

Part of this therapy includes putting essential oils on his clothes, for him to inhale during the day. The Family Hope Center taught me which oils helps for what, and how to use it. I am truely equipped to help my son. BUT my personality forces me to always try to do better. To achieve more! To make a great day at school, an AWESOME day at school.

Today, my strive for perfection turned a great day, into something that I think is going to turn into a bit of a bad day. Today, I experimented with a different oil. Thinking that it will make my son easier to deal with at school, making his great day, an awesome day…. Today I failed.

Within moments of driving on the long gravel road to town, my son suddenly flipped. He went from my quiet little farmer angel, to a monster from the planet zordon. My child was uncomfortable in his own skin, he couldn’t control his emotions or his actions. My child was an exploding time bomb, ready for destruction. Screaming, shouting, growling, hitting me so very hard that I thought my stop after school might just be the ER…. Spitting, telling me in his own language that I am the lowest form of life ever to set foot on earth. Going WILD.

My son is 8 years old…. If he were in his teens. I would have blamed it on hormones and emotions…. My son has Autism. If I didn’t had that diagnosis, I would have thought he is a naughty monster, and most probably would have punished him in some way, and I would have used my angry, disciplining mom voice.

BUT. I knew why my son is reacting in this way. My little experiment in search of perfection. Did harm to my child. The oil I thought was going to help turn great into awesome, weren’t doing what I expected to. It has good properties, but it is clearly not meant to be poured over a child who is already unstable and hyperactive. Today I experienced an emotion, I wonder how to explain, I wonder what word to use…

I tried to help my son. I was not happy with him already doing good. I wanted to do BETTER. And because of that, I did my son harm today. I made him feel uncomfortable and uneasy with himself, I caused him to have what my logic tells me is going to be a bad day….. THIS is a new emotion, a new sense of failure….. Knowing my child is in a bad state of mind, because of me….

This makes me think. That one must use a gift given to one, wisely. So many times one has been given a certain ability. An ability to speak in public places, an ability to help other, knowledge, an ability to write….. Sometimes that gift, can also be a sword of destruction. So often the red man with the fork (oh how I hate to give him recognition by giving him a name), can manipulate us, to unknowingly use that gift we have, as a sword. Causing negative conclusions, instead of that gift spreading the positive it is meant for. We have seen this happen many times, public speakers, celebraties people with power,speaking, doing, without thinking… Spreading words and actions,causing more negative then they ever thought it would at that given moment. Afterwards picking up the pieces of that moment the gift turned into a sword. I for one can say that, that red fork has pinched me, almost causing trouble. It is human nature. We aren’t immune to that red man and his fork. We all sometimes fall in his trap, we all sometimes get pinched. BUT. We must learn to use the gifts we get as a blessing to others, as a blessing into our life’s, as an enrichment to the world. We must learn to stay strong, be wise, and when that man with his fork comes, we must be strong enough, wise enough, to ignore his little pinches. Because his little pinches, has the ability to cause destruction, that we sometimes aren’t able to build up again.

I used my wisdom, my fighting spirit, in a wrong way today. Today, I wrongfully used what I got, and I caused havoc and negativity in a boy’s day whom I love with my whole heart. Today, I learned a lesson again! I learned to be wise, to think, to be strong enough to ignore those pinches of the red fork.

Life of a special needs parent is everything except boring. My son went crazy. My body enduring his beatings, my back and neck surviving a multitude of beatings, my make up getting a lovely glossy shine of my child spitting me. It was excruciating. Physically, emotionally, it was BAD.

Stopping at school, I expect my son to either hit me over my head, or completely break down, when suddenly he tells me in his own language that he is going to be angry like this when I pick him up again. I look at him, tell him that I love him. When suddenly my monster son, looks at me, and CLEARLY says the words:”

” Goodbye mom!”

It was like angels whispered in my ear that everything IS GOING TO BE OK! It two of the most beautiful words I EVER HEARD IN MY LIFE!!!!

Not only is this two new words! But is is 2 new words in another language! We are Afrikaans speaking, my non verbal son saying two new words in our second language totally bummed me out! It was….. Now THIS is where I get to only a special needs parent truely understand a special needs parent. Because, THIS emotion, not even I can put into words, it was…….. ( If I was able to use emoticons on this keypad, you would have seen alot of strange emoticons right now).

Through my mistake today, through me using my gift of wisdom in a distructive manner,there came something good. Through the negativity that I have spread today, there still was a bigger hand over me. Showing me this victory, showing me that is ok to be human, and make mistakes sometimes, and that there ALWAYS is hope, there always is forgiveness, and,

there always will be another chance to use our gifts wisely…..

Using our gifts wisely….

In my quest of healing my son, trying my all to give him a future. I sometimes make mistakes. And today was definitely one of them.

All I want is my child to do good in school, to be happy, to live a normal life. And therefore I tried everything possible. We have been to specialist after specialist,tried medication after medication. After 8 years of searching for help. We finally found help from the Family Hope Center. These people are amazing. And they gave me a therapy plan to heal our brain injured son.

Part of this therapy includes putting essential oils on his clothes, for him to inhale during the day. The Family Hope Center taught me which oils helps for what, and how to use it. I am truely equipped to help my son. BUT my personality forces me to always try to do better. To achieve more! To make a great day at school, an AWESOME day at school.

Today, my strive for perfection turned a great day, into something that I think is going to turn into a bit of a bad day. Today, I experimented with a different oil. Thinking that it will make my son easier to deal with at school, making his great day, an awesome day…. Today I failed.

Within moments of driving on the long gravel road to town, my son suddenly flipped. He went from my quiet little farmer angel, to a monster from the planet zordon. My child was uncomfortable in his own skin, he couldn’t control his emotions or his actions. My child was an exploding time bomb, ready for destruction. Screaming, shouting, growling, hitting me so very hard that I thought my stop after school might just be the ER…. Spitting, telling me in his own language that I am the lowest form of life ever to set foot on earth. Going WILD.

My son is 8 years old…. If he were in his teens. I would have blamed it on hormones and emotions…. My son has Autism. If I didn’t had that diagnosis, I would have thought he is a naughty monster, and most probably would have punished him in some way, and I would have used my angry, disciplining mom voice.

BUT. I knew why my son is reacting in this way. My little experiment in search of perfection. Did harm to my child. The oil I thought was going to help turn great into awesome, weren’t doing what I expected to. It has good properties, but it is clearly not meant to be poured over a child who is already unstable and hyperactive. Today I experienced an emotion, I wonder how to explain, I wonder what word to use…

I tried to help my son. I was not happy with him already doing good. I wanted to do BETTER. And because of that, I did my son harm today. I made him feel uncomfortable and uneasy with himself, I caused him to have what my logic tells me is going to be a bad day….. THIS is a new emotion, a new sense of failure….. Knowing my child is in a bad state of mind, because of me….

This makes me think. That one must use a gift given to one, wisely. So many times one has been given a certain ability. An ability to speak in public places, an ability to help other, knowledge, an ability to write….. Sometimes that gift, can also be a sword of destruction. So often the red man with the fork (oh how I hate to give him recognition by giving him a name), can manipulate us, to unknowingly use that gift we have, as a sword. Causing negative conclusions, instead of that gift spreading the positive it is meant for. We have seen this happen many times, public speakers, celebraties people with power,speaking, doing, without thinking… Spreading words and actions,causing more negative then they ever thought it would at that given moment. Afterwards picking up the pieces of that moment the gift turned into a sword. I for one can say that, that red fork has pinched me, almost causing trouble. It is human nature. We aren’t immune to that red man and his fork. We all sometimes fall in his trap, we all sometimes get pinched. BUT. We must learn to use the gifts we get as a blessing to others, as a blessing into our life’s, as an enrichment to the world. We must learn to stay strong, be wise, and when that man with his fork comes, we must be strong enough, wise enough, to ignore his little pinches. Because his little pinches, has the ability to cause destruction, that we sometimes aren’t able to build up again.

I used my wisdom, my fighting spirit, in a wrong way today. Today, I wrongfully used what I got, and I caused havoc and negativity in a boy’s day whom I love with my whole heart. Today, I learned a lesson again! I learned to be wise, to think, to be strong enough to ignore those pinches of the red fork.

Life of a special needs parent is everything except boring. My son went crazy. My body enduring his beatings, my back and neck surviving a multitude of beatings, my make up getting a lovely glossy shine of my child spitting me. It was excruciating. Physically, emotionally, it was BAD.

Stopping at school, I expect my son to either hit me over my head, or completely break down, when suddenly he tells me in his own language that he is going to be angry like this when I pick him up again. I look at him, tell him that I love him. When suddenly my monster son, looks at me, and CLEARLY says the words:”

” Goodbye mom!”

It was like angels whispered in my ear that everything IS GOING TO BE OK! It two of the most beautiful words I EVER HEARD IN MY LIFE!!!!

Not only is this two new words! But is is 2 new words in another language! We are Afrikaans speaking, my non verbal son saying two new words in our second language totally bummed me out! It was….. Now THIS is where I get to only a special needs parent truely understand a special needs parent. Because, THIS emotion, not even I can put into words, it was…….. ( If I was able to use emoticons on this keypad, you would have seen alot of strange emoticons right now).

Through my mistake today, through me using my gift of wisdom in a distructive manner,there came something good. Through the negativity that I have spread today, there still was a bigger hand over me. Showing me this victory, showing me that is ok to be human, and make mistakes sometimes, and that there ALWAYS is hope, there always is forgiveness, and,

there always will be another chance to use our gifts wisely…..

Cracking the bubble of isolation

One thing that I have probably experienced in my life the most is isolation. Being wrapped up in my own world,with my own circumstances. Feeling that my business, is my business, and no one has to know. Scared of anyone’s opinion, or input in my life. I lived a life, where only the very few,the very dis fortunate, got to hear and experience my whole life journey. One hides things. One does not speak, one hides behind a smile, make-up or the figurative mask. Only showing the world what WE want to show them. This is a very lonely way of life, but, it suited me most of my life. Not opening myself to any judgement, not allowing space for anyone’s opinion or interference. Just going on. Fighting my own battles, taking on whatever life throws at me by myself.

Although I wish I could have planned my life, and lived it accordingly. I wish I could have lived it, without letting many people in. But, we are not the author of our own life story. And we cannot completely make our own decisions. There is a BIGGER hand over us all, directing us in the way He wants our life to go.

Going on with my life, I was forced to let people in. I was forced to drop the mask. And reveal our true journey. This was one of the most difficult things ever. Revealing what is really going on. Inviting people in, asking for help. THIS was one of the most difficult things EVER, being so used to be independent, being so used to live a life very few knew of.

Although circumstances with our son forced us to reveal some of our journey. I still managed to guard myself in a way. Still not blabbing my whole life’s journey to the world. Feeling comfortable, not wanting pity or people worrying about me. After all, although I broke down in a very bad way, I am still strong, and I know that I can endure life without people thinking that I am NOT, underestimating me, worrying over me, when it is NOT necessary.

One gets used to this way of life. One forget that the outside world is not always cruel and full of judgement. One forget that outside that bubble one is covering oneself in, that there are people outside who CARES.

My bubble got a crack. And that crack gave opportunity for people who really care to enter. In a moment of despair,telling a friend about a sudden huge concern, opened up a world for me, I didn’t allow myself to know that it exists. Thinking that only 2 persons on earth knows about my dilemma. When suddenly, I read on a world wide WhatsApp group that people is trying to get help for ME! Discussing how to get to ME! Making life easier for ME! Oh what a feeling. At first you feel betrayed, for someone making that crack in my bubble bigger. But then, after reading messages, hearing voice messages, the positive overcomes the negative by far. And then I realised that it was purely out of love and friendship that that person opened my journey to the outside world.

This was a big game changer in my life. It gave me a complete new outlook in life. And it taught me yet again another lesson.

Our journey with our son, made me realise that it is ok to reveal one’s true life journey, it is ok to ask help. It is ok NOT to pretend that life is good all the time, it is ok to be vulnerable sometimes, it is ok to ask for help when one can’t overcome the challenges of life all alone by oneself. It is ok, to let people know if one is facing a mountain. It is so difficult coming to the point being able to say that all of this is ok. Especially if you are independent, introverted, and gets uncomfortable if someone shows pity or sorrow towards one’s journey.

BUT

Coming to THIS point in life, is VERY MUCH worth it!

I came to the conclusion that life is easier, if you let some outstanders in. That a journey is much easier to walk, if you are not walking it alone. That it is assuring to know, that if one should fall, that there is people walking with you, ready to pick you up. That if life’s burdens gets to heavy, that there is people to help you carry some of the weight.

All we have to do is ask for help, let people in on our journey. Those who belong on our journey won’t hurt or judge,they will support and care no matter what.

Many of us is walking difficult journeys. Everyone at some point in life is facing a mountain, busy walking a difficult journey, one feels scared, ashamed, humiliated to walk. Weary about what the outside world might think of our journey. Although all of these negative feelings is overwhelming. One has to reach out, one has to let that bubble of isolation crack for outsiders to enter. One CAN’T go through life alone.

It took me my lifetime. I endured and felt, and persevered a life time with the minimum people in my life. But, I realised that life is

SO MUCH BETTER, WHEN SHARED!

Today, I want to share my lesson. I want to tell those who may be alone in a difficult situation, to reach out, to ask for help. It is difficult at first, but once you experience life with support, you will realise that it is so much worth it, cracking the bubble of isolation…..

Autism uncensored

Many, many times in my life I hear the question “what is Autism?”. Many times I get told they don’t understand our life’s. Many times I get asked to explain. As much as I try to post facts on Facebook. As much as I try to educated people briefly, one just can’t explain Autism. Reading about autism is easy, living with autism is something else. Especially because not one person on the autism spectrum is exactly the same. Therefore I decided to take you into our life’s. No pretending, no trying to cover things up, our life with Autism, totally UNCENSORED. And then,maybe, some will understand.

Our son does not look disabled. If you see him,you might think he has bad parents. Because very often his hair is out of style, growing in all directions, his nails is sometimes long, and he very often has dirty feet. In winter times you will see him with short clothing.Looking at our son at the best of times, one will think that there is something wrong with his parents. NOT with him. What the majority of the outside world does not know is that he is extremely sensitive on his hair, nails and skin. He HATES shoes. He is drawn to mud and sand. The outside world only sees the child. NOT the struggling mother, with a wish in her heart.

Going out into public can be a horrifying experience. Certain smells, sounds, textures, agrivates our son, and within a split second he can have a major sensory meltdown. To the public this usually seems like a naughty child, throwing a tantrum, with an incapable mother. To me, it is one of the most difficult experiences, not only trying to deal with our son who is unable to cope with his surroundings, who is totally unacapable of containing himself in a social acceptable way. But, I have to deal with people glaring, making insensitive comments, and people who JUST DON’T UNDERSTAND. The outside world sees a naughty child and an incapable mother. The outside world does not know that at that moment, I am carrying my child, as well as the public…

Our son can’t speak. He has his own language. Which only about 3 of us understands completely. He communicates through sounds, noises, and if one really does not understand him, he will try to explain what he is saying, this causes frustration to our son,who so desperately wants to communicate. Many people thinks because he can’t speak. That he can’t hear or understand. Many people often insults him, asking me IN FRONT OF HIM why he can’t speak. Many people tells him TO SPEAK IN A WAY SO THAT THEY CAN UNDERSTAND HIM! Our son may not have a voice, but he has a soul, he has a heart, his hearing and understanding is in perfect condition. Even if most of the outside world is unable to see, or understand this. There is no words on earth to explain the feelings my heart has to endure, when my son looks at me, after being insulted by a person because of his speech….

Our son lives for farming. It is all he watches on YouTube, it is the only type of book or magazine he is interested, it is ALL he “talks” about the whole day. He LIVES farming! This can sometimes be annoying, or can cause frustration on my behalf. In my son’s 8 years of life, I NEVER had a decent conversation with him. He is not able to engage in a conversation. He will keep on and on and on, about HIS interests. Me being a city girl by heart, born and raised in Johannesburg, sometimes find this a bit difficult. My heart longs to have a conversation with my son about his favorite cartoon,at toy, something that happened at school…. What I would give to have a conversation with my son….

To those, who constantly think I am ill. ( oh goodness, there is this one shop in town, where one of the workers ask me each and every time I go there, why do I look so ill.). I am not ill! If you walk a day in my shoes, you would realise WHY I don’t always look like a super model straight from Milan! I am real, I am not pretentious, and I am not going to let my child climb over our gate, or have another meltdown, while he has to wait for me to to make up and hair for a fashion shoot. If live pushes, heck yeah, then I leave home without putting mascara on! My child comes first, NOT your impression about me. Those who really care and knows our situation, will know why jeans and a black top is my number one choice, as in almost everyday. If only the outside world, can see my life, if only the outside world can feel how it feels to walk a day in my shoes.. Then they would understand, why appearance does not really mean that much….

It is very difficult to handle our son sometimes. Yes, we admit. We don’t always know how to deal with him. THAT’S WHY we got help. It is no secret. Sometimes I just don’t know anymore. BUT, by telling me my child needs a hiding, or I must be more strict,or that I must apply more discipline. DOES NOT HELP! These rules does not apply to a child with Autism. People making these remarks are only letting us, as parents, develop negative feelings about you,who are making the comments.

My son is 8 years old. I don’t have a mother son relationship with him. Not because of a lack of love or caring for my son. Not because I am a cruella de Ville of a mother. Purely because our autistic son basically lives in his own world, with no ability to show empathy or love. I honestly can’t recall if I EVER had a decent hug from my son. He is 8 years old…..

One tries to see only the good. One wants to talk only about the good and the comfortable. But Autism is REAL. The negatives in our lives is a BIG reality. Yes, there is victories and happy moments. But, one can’t always hide the heart aching part of living with Autism.

If only the outside world can know how it is to live with Autism, uncensored, uncut….

Maybe THEN, there would be more acceptance, more understanding, LESS judgment…..

When failure turns into thankfulness….

Being a parent, or more precise, a special needs parent, means that one comes to a point where you give your whole life to your different abled child. One forgets about one’s own needs, one starts to live only for what the child needs. You go on, and on, not thinking about how we manage to get through every day, not realising that being able to do things for one’s child is actually a GIFT. One takes for granted that being ABLED is a privilege, and not a right. One forgets that EVERYTHING can change within the wink of an eye.

I went on with life, not thinking about “what if?”. Just presuming that I will never fail to do everything and more for my child. Not thinking that I am also just HUMAN. I went onto survival mode for my children, especially for our autistic son. Looking after his every need. Devoting my days, my life to his therapy, spending hours on the floor with him. Not thinking that I maybe, just maybe might not be able to do all of that with him. Taking life for GRANTED.

When suddenly. A little mark on one’s leg,becomes a little wound. And a little wound becomes a big, frightening display of pain. And as all mother’s are. We neglect ourselves. I didn’t see it as neglecting myself. I saw it as being clever. Saving money on my medical expenses, so my son can do and have this and that. I had a loving relationship with Dr G. Oogle. Google was my partner through many many situations. And I trusted him. Why go spend money on a doctor, when doctor google tells you what is wrong,AND how to treat it!

In my search of self healing, my dear friend google told me that I was either bitten by a sack spider or a violen spider. He is very clever when it comes to giving treatments. But rather very insensitive when it comes to graphics. One does NOT want to see the spider! One only wants to see how the wound looks, to compare to your own. While I thought I was healing my own flesh, my spirit was broken by scary images of monsters climbing onto me while sleeping. I was scarred outside and inside! To scared to close my eyes. To scared that Mr Sack Spider is coming for a late dinner again.

In this time, I gained lots of knowledge. I will probally be able to identify a sack or violen spider a mile away. AND I know, AND tried almost EVERY home remedie there is! I am now able to tell you NOT to put an onion on an open wound, not even if DR G tells you to. It is an experience that is not fit for the faint hearted. I can also tell you. That although honey is an awesome resource, it does NOT heal everything… And the list goes on. Open your kitchen cupboard, I most probably tried everything you see in there.

So, my trusted friend, Dr G failed me for the first time ever. And I ended up in big trouble. Not being able to be as mobile as I am used to. Ending up at our General Practitioner. He is much more clever and helpful then my old friend. But the verdict was like nails scratching on a chalk board. I waited too long. What I thought was a spider bite, actually a very bad germ infection. Hearing from the Doctor and the nurse that there is a possibility that I can loose my leg, shooked my whole world upside down! Hearing those words, immediately made me think “what about Nickholis”. Images flashing through my mind of us doing therapy together…..

Circumstances forced me to go home, instead of going to hospital. Going home, looking at my child. Hearing the doctor’s words in my head over and over again. Feeling pain, seeing pain,my milk white flesh, now a deep scarlet red…..

Suddenly the things I took for granted. Was the things I prayed for. Suddenly there is a possibility that I won’t be able to spend hours of therapy on the floor with my son. Suddenly, I realised that there is a possibility that tommorow might never come! Praying that the infection does not hit my blood stream, praying to see my children grow up. Praying to still be able to WALK!

Experiences like this. Changes one’s whole world. You are suddenly aware of the smallest things,you suddenly appreciate things you usually not even think about when doing it.

Sometimes we are so tired. Sometimes we complain about doing everything for our children. But, WHAT IF, you blink your eye, and a little mark, turns into a wound, and a wound either takes an organ, or even a life! WHAT IF! Harsh to think about life in this way. But it is reality. A reality I only got to think about for the first time these past few days. As silly as it sounds, I enjoyed doing everything for my children today. I might as well not have been able to do this. It all might just as well have been taken away from me!

Again. My faith got stronger. And I caught myself praying, hoping for everyday things, like getting up the next morning…. Sometimes it is difficult to keep the faith when you want to scream “WHY!!!”. At a stage I couldn’t believe this mess I was finding myself in! I’m a mother in the middle of a mission to heal my different-abled child! I can’t just be removed from my mission. I know it is inevitable, that one day I will never wake up again. But I couldn’t get over the fact that my health is being threatened, while I am on a mission to change my son’s life!

Our father heard my prayers. And with my visit to the Doctor today, the doctor and the nurse was pleasantly surprised. Both smiling, telling me that my leg looks a lot better. Nurse telling me that they honestly thought that I am going to loose my leg. And that they didn’t think I was going to heal. Hearing her speak about blood flow, and all sorts of medical terms, seeing her with her tweezers on flesh that hurts just by looking at it, was images and words that was like food to my soul. I didn’t mind hearing about how bad it was, I didn’t mind my over sensitve body wanting to jump through the roof, the tweezers touching my flesh, I only thought about that I am going to make it! I am going to be able to run around like a mad chicken after my children who thinks I am their personal slave, I AM GOING TO LIVE!

I walked out the doctor’s rooms. With a smile on my face, and a praise in my heart. Thanking our father for this second chance!

I don’t believe in coincidence, I believe there is a reason for EVERYTHING! At first I battled a bit to see the reason for my sudden illness. But, I soon came to realise

That I took life for granted. This was my wake up call to be thankful for EVERYTHING. Not just going through life, taking for granted that other people wish for. Because I am privileged! I have 2 legs. I am living. Many people does not have the luxury of walking, many people my age already changed their life on earth, for that of the eternity….

It also made me realise that although we had negative feelings about specialists, that there IS good, helpful Doctors on earth. Dr Ferreira and Dr Vemeulen proved that. They are people who let’s one forget about visits to other doctors who didn’t turn out well. They made us realise that good doctors does exist.

And then. Although we feel so extremely alone sometimes. Fighting battles very few know about or would understand. That there IS people in our lives who CARE! Who would do anything to help! Rentia, Irma, brain child fund tribe…. All willing to help,support. It made me realise that we aren’t so alone we so very often think. It made me realise that we are blessed with true and honest people in our lives. I am humbled and grateful for people like this. For in the times when I actually really needed a shoulder and a box of tissues,they were there for us. Rentia, who went out of her way to help. I will never be able to explain my gratitude towards you… My sis, Irma! Cheers! I’m drinking a strong cup of coffee on your behalf! Her literally seeking for help and support for me as far as Johannesburg and Philadelphia. Her trying to look for a way to get from Prieska to me!

I have life, I am on the road of recovery, I have people who cares…. I am blessed…

Through all of this positive feelings. I am still human. I am still mother. And as thankful as I am. I failed. I am now pulled to a standstill. I am not able to do therapy, or run around to do things for my children. I am basically only good to SIT! Failure is not an option. And if I’m not doing something to improve my child’s life,I feel like I failed. No, I am not hard on myself, I am not self pitying. Neither am I strong, or this or that. I believe anyone in my shoes would feel the same. Would react the same… My mission is to give my son’s better life, but by sitting one foot in the air is not going to do that!

Feeling useless and negative. Another life lesson comes to my mind. Maybe THIS is God’s way of giving me some much needed rest. Us as parents so often burns out, giving our all to our children. One can’t pour from a empty pot… One has to recharge sometimes. I wouldn’t have taken a rest if it wasn’t for THIS. I would have gone on and on and on!

In my mind I failed, but my heart is saying God had to do something drastic like this, otherwise I would never take a rest, and I would never gained these life lessons.

I slowed down, got educated about spiders, I gained knowledge about remedies, learned to appreciate EVERYTHING. My eyes got opened to see the love,the caring, and the beautiful through times that can seem like a tornado in a sandstorm.

My feelings turned from feeling failed, to feeling thankfull

FOR EVERYTHING!

Picking the fruits of perseverance.

For 6 years long, our joungest had the nick name called “ka”. Not by us, but by our autistic son Nick. For 6 years long, our oldest didn’t have a brother, but a “ka”. Purely because he didn’t have the ability to call his sibling, brother, or in our language, “boetie”

It all changed yesterday…. In both our sons came walking in the room. Both smiling, Nick held his arm around his brother, and said :”my boetie”. (My brother). The room was filled with emotion. We felt our sons pride. Our autistic son said two new words, and he knew it. He knew what he has achieved, he new he managed to said two new words he never has been able to…..

Moments like this is difficult. One wants to hug him, and praise him, and celebrate those words like it is the biggest achievement on earth. One wants to cry one’s eyes out….. One wants to shout it out on the highest mountains, one wants to tell the WHOLE world!

But you CAN’T.

We want to make our son feel proud and worthy, NOT different, thus the reason for us not throwing the celebration we wanted to. No one who hasn’t lived an autism journey, would ever understand the feelings when a child says a new word. Some would frown, some would think I am weird, some would wonder why I am so frantically excited about my child’s new words. Therefore, we have to celebrate between the walls of our home. In this case our journey is very lonely, so very few understand our happiness and our sorrow…..

Through all our pain, through all our hard work, through all the times when we thought we had no outcome, we learned that there is hope, that there is a future for our son. Living the fruits of our hard work, of our perseverance, is one of the best feelings on earth. Sometimes it feels like we have lost our sanity, and that we are making a big mess of this new journey we took on, and that we are getting no where. When suddenly you hear two new words, or a school report comes home, or someone makes a comment about how your child’s behavior has improved. And then all those negative thoughts just fade. Sometimes we just need to see that what we are doing is worth it. Sometimes it is difficult, because patience is a characteristic we are still learning to perfect.

Our child saying two new words. Recognising his brother for the first time since he has been born,told us to persevere. To keep on going, keep on helping our child to the best ability we can, to keep our faith.

It is not easy keeping faith, it is not easy going on for time stretches that feels like forever, but one simply can’t just give up. This is one of the biggest lessons I had to learn this past few months. If I gave up when I thought I was going to, then my child would have had NO future. Perseverance is key. And eventually, our prayers get awnsered , EVENTUALLY OUR CHILD SHOWS PROGRESS.

Today I want to tell anyone that may on the verge of giving up, to keep on going,to keep on persevering, TO KEEP ON BELIEVING. Because eventually, in HIS timing everything WILL work out.

By giving up, one gets NO WHERE.

One small step for neurotypical children, one GIANT leap for special needs children. Words only a selected few would understand. Those few who understands these words, knows the feeling of seeing no other way than giving up, but those are the people who also knows the feeling of PICKING THE FRUITS OF PERSEVERANCE…..

Learning to dance in special needs boots.

Odd looking, plain, unconventional, very little varied,these are the shoes of my journey. I didn’t choose my journey, but I came to the point that I made peace with my journey, to the point that I am comfortable, accepting the shoes given to me. Yes, I dreamed of the fairy tale life, wearing sparkly glitter covered shoes, walking down beautiful scenery. But, for some its meant, for some it’s not. While I was aiming, dreaming of that sparkly life, I was given a U-turn in life. I was given a rocky, gravel road, and shoes to fit the journey. Literally and figuratively…..While walking in my glittered covered shoes, I got directed into a whole new lifestyle, when an accident changed everything, and I had to get metal implants in my foot to get it’s function back. While I was dreaming of my children becoming the world’s biggest this, or the world’s biggest that, I was given a brain injured child…..

One can window shop for shoes as much as one wants to, but if the shoe does not fit, IT DOES NOT FIT.

It’s difficult accepting one will never wear fancy glittery shoes. It is difficult accepting your child’s diagnosis.It is difficult to see other people walking a beautiful, paved road in the most fashionable shoes. While one has to be on a gravel road wearing terribly ugly looking boots. It is not easy to be given a U-turn in life….

I battled years on end accepting my faith. I battled for a very long time accepting that my foot is left looking odd, big, and not fitting into any shoe I want it to fit in. I battled 8 years long to accept the fact that our journey, is one of having a brain injured child in our lifes. Acceptance is hard, it is difficult….

Being on a journey that is far different than most other people, attracts criticism, judgment, and questions about the journey we are on. It is the most difficult thing on earth trying to explain to another person exactly how our life’s are impacted by the type of road we are on. One will never truely be able to explain the feeling of rocks under ones feet, when one’s shoes is torn into pieces, and full of holes. One will never be able to explain the emotions and feelings of a special needs parent….

My shoes, my journey might not look attractive to most people. But, to us on this journey I learned in a hard way that we are fortunate to be on this journey. In a way I feel we are blessed to feel what we feel and endure what we endure. On this journey of being a special needs mom, I’ve seen and done and learned more in my life thus far than I ever thought I would have. I am blessed to say that I have endured the rockiest of roads, making my feet stronger, I felt the most agonising heart ache, it made my soul stronger, I went trough dissapoinments, it made my expectations lower, I went from doing everything by myself, to being forced to give my whole life over in God’s hands, this made my faith stronger…… At times it felt like we are the only one’s on earth with these circumstances, at times we felt the icy coldness of total isolation, but, as we walked down our road of life, we made friends. Not only friends, but people who touched our souls, people whom you know for a short while, but you connect in a way that you feel you know them your whole lifes. These people are blessings sent on our life journey. These people are fellow special needs parents. There is this unexplainable moment, when two special needs parents makes eye contact, and both just connect and feel each other’s journey. For they know how it feels to walk on rocky roads with damaged shoes, for they endured the same…..

I would have loved to live the big city life with sparkly shoes. But this was not meant for me. It took me very long to accept my journey and my shoes. But being on this journey of mine, made me see the sparkle in my boots. Because my special needs boots is busy taking me to places beautiful and unknown. It is busy breaking all boundaries, it is showing me a new life with things I would never have experienced wearing sparkly glittered covered shoes…..

To learn that one’s child is disabled, to learn that your foot will never fit into stilettos again. To learn that you are headed for the rockiest road imaginable, is daunting, it is scary, and very often we fall over the rocks in our road. But, once we learn to walk in our boots, and our feet learn to adapt to the new road, we will be able to look past the road, and look at the scenery along the road. We will learn to stop, and inhale the beauty our journey has to offer. We will learn not to just walk, but also to to dance. We will learn to feel smooth spots on our road, we will learn to hear beautiful melodies through sounds of chaos, we will learn to see how privileged we are to be on this road…. We will learn not to only survive, but to LIVE!

It took me very long to come to this point. And our journey on this road is still long. But I came to realise that having a special needs child is not the death sentence over a family that I thought it was a while ago. I came to realise that a diagnosis, is just the heading of a brand new chapter in life.

Acceptance is difficult. But once one learned to flaunt those special needs boots, once one learned to see the sparkle in the most excruciating situations, THEN, one can dance the dance of life, boots and all…..

Lessons taught by a six year old.

As we woke up this morning, me and my youngest decided to go outside to embrace a new day, and to breathe in the morning air. I was staring at the majestic mountain infront of our house, while Armand was observing each bit of mother nature that he woke up to. Suddenly my boy got quiet, as if something drew his attention the most intense way. He looked up, and stared into the beautiful display of dark and light. He stood looking, clearly contemplating about what he is experiencing. When suddenly I hear his small voice:” look mom, God is still sleeping, he is not making Nick better at the moment”. Head down, frowning, walking into their room, looking at his brother who is still sleeping. Time stood still, I froze….

If I could have captured one moment of my life to keep forever. This would have been it….

For a moment my heart sank, my life got new perspective within a unexpected blink of an eye. My heart’s rythm changed. My world got shooked ….A little boy, concerned about his big brother’s health. For the first time in my life I realised the impact Nickholis’s autism really has on the whole family. For the first time in my life, I realised that our 6 year old boy knows and feels more than we ever thought he did…. For the first time I felt an undescribable, bitter sweet emotion, my little boy, deep in thought about his brother. It was a hurtfull moment, me questioning life for a split second. My whole inner being, crashing down for seconds, my emotions threatheninig to prevail itself…. But, love conquered all, and experiencing the love my two boys has for each other made it one of the most beautiful, most remembered moments ever.

Sitting down with my son, grabbing the opportunity to teach him about our heavenly Father, and how he never sleeps, and how He will heal Nickholis in his own timing, comforting my son with my words, putting him at ease that God never sleeps, and is always looking after us all, made me realise that in this moments experienced, is lessons captured, not only for me, but for every parent, every grown up as well.

In the early hours of the morning, my six year old made me realise that I am so used to stare at my mountain. I am so used to stare at problems, mountains in life that I have to overcome, that I never take time to notice the beautiful in life, that I never take time to wonder around and experience the good life has to offer, THAT I NEVER TAKE TIME TO NOTICE THAT IN THE COLD AND DARKNESS, THAT THERE IS A LIGHT SHINING DOWN ON US, PROTECTING US, SHOWING US THE WAY, GIVING US HOPE AND PROMISES THAT THERE ALWAYS IS LIGHT, EVEN DURING THE DARKEST OF TIMES……

Today, a lesson to my 6 year old, turned out to be a lesson for me. We so often think our heavenly Father is sleeping, we so often think He has left us…. In my life this thoughts disappointingly ran through my thoughts much more than it should have had. Letting go of all one’s dreams, having to accept the fact that one has an disabled child, enduring pain and emotions very few would ever understand, having to deal with guilt trips and fears, one humanely can’t help to think the same thought my 6 year old thought this morning.

Reading that first Autsim diagnosis. Left us in the darkness, in the cold, staring at a mountain, feeling the sharpness of the cold wind cutting through one’s skin. Feeling the coldest, most alone feeling on earth.

STARING

Wondering, overthinking, feeling like everyone and everything has abandoned us.

I didn’t understand the mountains I had to conquer in the past, In moments of disparity, I still sometimes wonder why ME, why US. I still have to grow to fully understand the way of life.

But, today I realised that if it wasn’t for the mountains I had to overcome, that I wouldn’t have been able to give my son a lesson in life this morning. Today I realised that all those times of testing and immense pressure, made me strong enough, to understand life in a way, that enabled me to give my son hope, that enabled me to be fully confident when telling him THAT GOD NEVER SLEEPS.

It may be small, and it might not awnser my whole heart’s questions. But it is comforting realising that if it weren’t for my previous challenges, that I never would have been as strong as I am today.

I know life has a way of testing one’s ability to survive. But I am also lucky enough to know that one comes out stronger, NOT weaker. For this reason, I am okay with all the challenges in life. For I know I am being enabled to face bigger things, to walk stronger, to live more fierce full……

Today, my 6 year old gave me a few lessons in life, I am privileged…..

And if I am granted to wake up tommorow morning, my eyes won’t touch the mountain, my eyes, my soul, would touch mother nature, my soul would seek for the light shining on us, and I would wonder around looking for the beautiful the morning has to offer,

Because this is what my son taught me in life….

Autism explained. How it effects our world.

Autism. The biggest mountain our family EVER had to overcome.

It is a different-abilty which comes in all shapes and sizes. No child on the autism spectrum is exactly the same. Symptoms differ from child to child. Yes, we call our children

DIFFERENT-ABLED

Not

DIS-ABLED.

Our children are different, but NOT less. They are often very talented, or have a unique skill. Our son for one knows direction far better than me. Whenever we get lost, I just ask Nick, and he will explain to me in his own unique language where to go. Some has the ability to read and write at a very early age, some has immense knowledge about certain fields. Our children has diffrent abilities so many people don’t seem to recognise, because one only looks at the negative.

Yes. Autism has knocked me over and slapped me in the face. Autism is a journey no one could EVER be prepared for. It is NOT an easy journey. But somehow parents on this journey gets the ability and strength to cope and to overcome obstacles this A word throws at them. It is sometimes amazing how us autism parents can be knocked down, but still be able to conquer mountains for our children. In a way I think we are ALSO different-abled. Every parent is a super hero in their own way and respect. But sometimes I feel an autism parent deserves a crown to go with that super hero cape for enduring what we have to.

Autistic people very often does not look disabled. If one for instance looks at our son, he does not physically look hurt. But the moment he opens his mouth, or he enters a room full of strangers, or if he is confronted by loud noise or bright lights, then one can clearly see the autistic symptoms coming through.

Many autistic people has sensory problems. Which means they aren’t able to function in loud noise, bright lights effects them, they can’t handle certain smells, some has a very high pain threshold, some can’t handle certain textures touching their skin.

With Nick. We have many problems during the winter. We always have the fear of people thinking that we aren’t able to provide our son with winter clothes. Because he can’t handle clothing touching his arms and legs. He wears summer clothing straight through the coldest winters. And where we live, close to the Swartberg Mountains, it can get VERY cold. It is very emotional for the mother heart to be wearing thick winters clothing, while one’s child is playing outside in the cold, wearing a short sleeve shirt and gym shorts. It is a feeling difficult to describe. You feel cold despite your warm clothing, and there your child is, feeling NOTHING. This is an emotional battle I have to go through every winter.

Then there is the social aspect. Some autistics avoid contact with people. Some tend to be unable to behave in an acceptable manner when in a social situation. Our son takes over. He does not have the ability to know boundaries when in a social situation. He corners everyone, and gives them lessons about farming. Mostly he would have his farming or hunting magazine with him, and then he would show and tell as if everyone is there just for him. This makes going to people very difficult. Some understand, and listens to Nick in the most caring way, some would half heartily try to engage in his conversation, and some would be plain offensive towards him. He also does not have the ability to understand if someone is reacting in a negative way towards him. He would just go on with his magazine and his lesson in farming without knowing about the world around him.

Usually an autistic person is a very picky eater. I’ve heard stories of children eating the strangest things day in and day out. In my life time I have heard about the strangest situations, like a boy who only would eat potatoe chips, covered in swimming pool water. I am sure this is a very rare occurrence. But this is also the reality of life with Autism. Before our life’s changed with the Family Hope Centre, our son only ate two minute noodles and polony sandwiches. He refused to eat anything else. One of the biggest victories a parent of an autistic can have is if one’s child eats something new. It feels like one of the biggest accomplishments ever. It feels like one can shout it out to the whole world. Yet, we can’t. Because so very few understand. This is one instance where autism parents gets each other in a way no other can. So very few people with normal children will be fully able to experience what we feel the moment our children eats something new. It is a feeling beyond words. To us, it is VICTORY.

So very often autistic children is seen as naughty, unmannered, not brought up properly. So very often us parents are told that we aren’t capable, that we should give our children hidings, that we should be more strict, that we should do this, do that. News flash to anyone telling us this: OUR CHILDREN IS NOT NAUGHTY, NOR ILL MANNERED. They are just unable to react acceptable in certain situations. Sometimes they are getting a sensory overload from the environment they are finding themselves in, sometimes they are overwhelmed by the unfamiliar scenery, sometimes they are just unable to cope with everything going on around them, sometimes their inability to speak,to communicate, gets the best of them, and then they try to communicate in other ways, for instance, hitting, touching. Our children very often does not have personal boundaries, and does not have the ability to know about personal space, and therefore does not know that it is wrong to hit or touch a person all the time. Dear person, telling me to smack my child: smacking won’t heal my autistic son.

Some autistics gets stimulated sensory wise by stimming. Sitting with one object, hitting it over and over, or rolling an object back and forth the whole time, or doing the exact same movement sometimes for hours on end. Some autistics find it comforting to rock their bodies back and forward for countless amounts of times. Our son does not stim. But this is just proof of how each child in the autism spectrum DIFFER.

Agression and anger outbursts was something we had to live with for many, many years. This is also a very typical symptom displayed by a person affected with autism. Usually medication, or even the right diet can control these anger and aggression outbursts.

Our son is what we see as pre-verbal. He communicates in sounds and noises, and he developed his own language only we, his parents can understand. It is very common for an autistic person to be unable to communicate. Some does not speak at all, and some communicate through the written language or with special communication devices. Being unable to speak causes very much frustration in our boy’s life. This is something that I as a parent carry very heavily on my heart. Since Nickholis loves people, he is not shy, sometimes over eager to try to socialise, his inability to communicate causes frustration for our boy, he is kind and loving, and he wants to spread his love, but autism is standing in his way of his beautiful personality.

I have experienced that autistics sometimes gets attached or obsessed with certain objects or certain subjects. In our situation our son totally LIVES for anything related to farming. And then, as you all probably know by now, Nickholis has his dog, Nevada. A very small, white Jack Russell, braver than the white Benguil tiger she is named after. Fearless and brave just like her counterpart, Nickholis. I often wonder if there is another dog that is so loving and enduring like her. She literally goes every step of Nickholis’s way. And when he greets her when he leaves for school, I get strict instructions how to treat his dog, and what to do with her while he is in school. For us, Nevada is heaven sent, she is truely our son’s one and only true friend.

Autism is a very deep and interesting field. There are many symptoms and behaviours that goes hand in hand with Autism.

In a world with a different-abled child, all the attention usually goes to the child, in negative and in positve ways. Which way ever, the parent so very often gets forgotten. We get judged, we get humiliated, we get hurt by uninformed people with lack of knowledge about the situation we are living in. If one sees me with my child going totally bonkers in a shopping mall, immediately I am labeled as a parent who can’t control my child. If my child causes chaos in a public area, immediately it is me that does not teach my child manners. If I go somewhere looking like I’m feeling sometimes, immediately I get asked if I’m sick, or if everything is ok at home. Without proper knowledge, and lack of empathy, which is normal, and human nature, we get judged and labeled by the outside world. I recall situations, many causing me humiliation and dis comfort. Me standing in a queue, a person ticking on my shoulder:” ummmm….excuse me, there is a little something on your knee”. As I looked down, that little something was actually a big something. My knees still full of marks, proof that I gave my child therapy just a short while ago. The person mentioning my lack of tidiness, not knowing that I was busy helping my son, but had to suddenly rush to the pharmacy to get my other child medicine who developed a fever within the blink of an eye. Having a child with autism, means your child comes first. In my case I devoted my whole life in the healing of our son. This means that I very often go outside the house looking like something that came from a second hand yoga wear shop. Dressing up, looking like I just walked out of New York Fashion week, is no option, if you had no sleep for countless of nights, handled 3 sensory meltdowns that day, and had a fight with your son because he wants to wear the same pants for the sixth day in a row, without it seeing a washing machine. Again, judgement, labels…. There is actually one shop in town I completely avoid, because of a lady at the one section continuously asking me if I am still sick. And then, the triumphant moment happens, when you actually get to wear skinny jeans instead of those mom pants, and then the whole world goes oooh and aaah… Asking what the occasion is….

These scenarios is part of our daily life’s. But this is also only a few mentioned. This is only the tip of the iceberg. Our lives is one big adventure full of ups and downs.

We didn’t ask for this, we weren’t warned about this. We weren’t given time to prepare us in every possible way for it.

Autism came, knocked us down, and slapped us in the face. But, with God’s grace we managed to get up, face life, and be stronger than ever….

For more information about the institution who gave us help, new hope and a future for our son, please visit:

www.familyhopecenter.com

Dare to inspire….

Alone, far away from familiar people or acquaintances, tucked away in the Klein Karoo, surrounded by bushes and a mountain staring at us, alone. Fighting a battle so very few understand. So very few know of. It is so easy to pretend. To hide. To isolate….. To be ALONE.

We thought battles very few on earth will earth will ever know about. We endured pain that only a minute part of the population will ever feel. We climbed mountains and fought fights that is shocking to the system to think back to it all…. I am in awe thinking that we are actually standing, and not just standing, we are standing firmly, getting stronger with each obstacle we have to climb.

We have not been given the easiest journey. We so often feel like the outcasts of society. Troubled, distressed, all eyes on us and our son. Uneducated, uninformed individuals judging, throwing comments, hurting…. We are for sure feeling like an outnumbered specie.

Drowning in trouble, I would never think that I would be able to face society again. Never mind making a difference in someone’s life. Never in my life I would have thought that our mountains and rivers we have to cross would mean something to another person. While I thought I was building walls around me, I was actually helping another human to overcome their obstacles. This is far beyond what my mind can process.

Starting a new journey full of hope, but also with obstacles, we start climbing. Looking forward to hope, but also looking forward overcoming challenges we know is yet to come. Tucked away, in a bush, with very few really knowing about our journey ahead, I recieve a letter that shook my whole world around. A letter touching every vessel in my heart, touching my soul so deep that it opened the river gauges of my eyes. A letter explaining someone’s journey. Hurtful, full of obstacles. Telling me that OUR journey helped them to heal. This is a feeling so undescribable, that one would never be able to feel, until that letter is addressed to one self. This is truely one of those moments where a piece of me changed. It turned around my outlook in life. It touched my deepest deep…..

With all my dreams I lived for my whole life gone, I never thought that I would be able to make a difference in someone’s life. With the first Autism diagnosis, our lifes changed. It was like taking our whole life, and dumping it somewhere. Leaving us, alone, tucked away in a bush. To deal with life alone…. Never would I have thought that I could change someone else’s journey. Never would I have thought that this is possible.

In my little house, tucked away far outside town. I read a letter from a person in the City of Gold. While I was living a life very few around me understand, I was actually helping another family 1200 kilometers away from me. Not knowing. Just going on, climbing my obstacles, not knowing that while I was climbing, that I was actually busy helping another climb….

WHAT A FEELING!!!!!!!!

While the rest of social media was having glamorous lifes. I had to come out. I had to bury that mask of “everything is cool, everything is fine”. I had to open my world to the public, because alone we were not able to endure this journey we have been put on alone anymore. This was probably thus far the most difficult thing we ever had to do. It is so easy to pretend. It is so easy to only post the nicest photo’s, the most glamorous stories. It is so easy to hide the thruth. But with hiding comes seclusion. I came to realise that one has to reach out to be reached to. I often wonder how many of my acquaintances would have known about our struggles if we didn’t decide to bury that mask…

If we didn’t come out and started sharing our journey. I wouldn’t have been able to sit here today with a humbled heart, knowing that I helped changed another family’s life.

Today I have it strong in my heart to tell special needs parents. To reach out, to share, to come out of seclusion. By coming out of seclusion doesn’t mean one has to get dressed and become the world’s biggest motivatonal speaker. It doesn’t mean one has to cover those puffy cried eyes, it does not mean one has to suddenly come out of one’s bubble and be confronted with the whole world’s population. One can touch another person’s life by simply telling one’s story, by simply sharing what one feels comfortable to share, or what God tells us to share.

I strongly believe today that God uses people and people’s circumstances to help save other people in deep waters.

I find myself thinking about yet another cliché :” everything happens for a reason”. I still battle sometimes seeing the good in this journey of ours. But I know today, that we weren’t put on this journey to hurt us, but to form us and make us stronger, that I didn’t start sharing our journey by coincidence. It was meant to happen, so that in my life, I can help change at least one family’s life.

Special needs parent reading this, I want to dare you to share, I want to dare you to inspire.

NOT ONLY DO YOU HAVE THE POTENTIAL TO CHANGE ANOTHER PERSON’S LIFE,

But you also have the potential to change the rhythm of your own heart…

Why????

Sometimes life throws curve balls we aren’t able to catch. Sometimes we can’t help asking why we are getting the circumstances we are. Sometimes we look at other people and we can’t help to wish, to wonder WHY? WHY US.

For years I have been asking myself the unavoidable question WHY.

Our lives is a whirl wind of emotions. Happy,sad, and SAD… Hearing our normal son counting to ten, proudly saying the months of the year. Our autistic boy staring at his younger brother, feeling ashamed, and starts to count in his own language, a rumbling mixture of sounds comes from his mouth. But he is proud, because he is counting to ten in the best way he possibly can… We look at each other with great admiration and pride, Nick just counted to ten. We celebrate his attempt. We praise him . But in our hearts we know that he is different…. This might be the most accurate definition of pain that I have. Being happy, thankfull for our youngest excelling in life, seeing our severe autistic son unable to function in normal life.

A special needs parent’s journey is hard, it is exhausting. We have to work hard, endure many trying times, persevere to an extent where we sometimes feel we can’t anymore, just to get our child to function in the smallest ways, which is taken for granted by so many. So many times, I can’t help by thinking to myself WHY? Why???

Our lives is anything but normal. We are currently working very hard on helping our son to function normally, not excelling in life, just to function in a way that he can experience life just like the majority of the population does.

Sometimes one can’t help thinking, why did this cross my road? Why me? Why us? Growing up, me being a sensitive introvert, having plans way other than THIS. I never ever thought that I would be the one chosen to be put on a journey like this. I never thought that I could be capable of enduring so much, fighting as hard as I did, still fighting for survival of my child, I never thought I had it in me…. I never thought I would be pushed this far…… I never thought I would ask the question WHY so much.

Life does not always give us what we want, but more what we NEED. I wanted a occupation, I wanted to be this and that. I did not want to change my whole life style. I didn’t want to keep on staying strong, I wanted to give in….. But, I got strength, I am busy getting a fearless, fighter personality, I miraculously changed our whole life style, I got everything I NEEDED to be able to proceed with God’s will for us.

This was not planned, If I knew all of this graduating from high school, I would have made LOTS of different decisions, I would probably have tried to get myself the highest education possible, for me to be able to handle what is to come…. But I did not know…. No one knows…. This special needs journey attacked us within a blink of an eye. It caught us of guard, totally unprepared.

BUT,

Our God provided us with what we need to endure and overcome this journey, His grace is helping us looking past those “Why” thoughts into “OK” thoughts.

Through this journey we are busy exchanging “why” for “OK”. We are busy accepting that God had a far bigger plan with this journey than we can EVER imagine. He is busy restoring us, He is busy renewing, He is busy opening doors we never even thought existed…

Through all the pain, pressure, hopelessness, we learned that our doubts of why we are encountered with this, was to teach us to say:” OK God, we know you have a plan for us”.

It took more faith ever imaginable, it took years of crossing over troubled waters, it took perseverance to an extent we thought we were going to brake,

To throw away the “why us?”

Into, “OK God, this is us, show us the way”.

I hope and believe that every special needs parent would be one day able to throw away the word :” WHY?”

And replace it with the word

OK”………….

A tribute to the Family Hope Centre

Living with an autistic child was one of the greatest burdens we were ever confronted with. At times it felt like there was no way out, we had no hope, we were going from one source of help to the other. Literately trying and experimenting with anything we could find our hands on, anything that promised hope…. We failed miserably. We ended up in darkness, hopelessness, alone with no outcome, no future for our autistic son.

One of the worst feelings ever to be felt by us, was the feeling of total helplessness. Wanting to help your child, but there is just no more resources,no more promises of help, no nothing. It’s like seeing your falling from a steap hill, but no matter how hard you try you just aren’t able to rescue your human being screaming for help. I never felt as helpless, as useless as I did these past eight years.

So often we hear the clichés that one day the light will shine again, that there will be light in the tunnel… It does not do the heart good to hear those clichés from people who does not have a vague clue how one feels or what exactly one is experiencing. I heard that sayings over and over again, through pain and sorrow, through guilt and hopelesness, my ears had to absorb saying after saying, cliché after cliché.

Until one day, we experienced that cliché! Until one day we literately saw the light shine again!

The Family Hope Centre became part of our lives in the most miraculous way. A way that can only be described as God’s hand over our family. He came, and he took our burden away, and He replaced it with hope, help and support. This by itself was a huge mountain to overcome since we didn’t have any of the finances to merely start the Family Hope Centre journey, never mind being part of their program in the long run. Today, with an overflowing greatfull heart, I am privledged enough to have our autistic son on their program. It changed our lives forever.

Humans as we are, we started this journey sceptic. Unable to realise that THIS is the help for our son. After 18 doctors visits over 8 years, any promise, seem to sound like an empty promise. But God’s hand showed us the way, and we started the most amazing journey of our lives.

It started out with me going to my first parent training conference. I walked into the conference room troubled,and deteriorated. 3 Days later I walked out there full of knowledge, full of hope and inspiration to create a future for our son. Suddenly we had awnsers, help, support, HOPE!

Our lifes NEVER to be the same….

I suddenly became my child’s therapist. One of the greatest experiences on earth is to see your child flourish, doing better on all aspects of life, because of what I am doing for him! Experiencing the fruits of my hard work, knowing that one day my child will have a normal life, because of what I am doing for him. I had dreams and aspirations, my life turned out anything but what I thought it would be. It took me 8 long years for me to realise my purpose: I am here to make a life changing difference in my own child’s life. I humbled and thankful for having this calling in life….

We now have a new chapter in our life’s. Suddenly everything changed. Our loneliness, turned into beautiful friendships with like minded parents with the same goal in life as us, our helplessness turned into having a plan to heal our child. What was meant to break us, turned us into stronger than ever fighters for our son,what meant to break us, gave us new meaning.….

Our visit to Pretoria to have our son evaluated turned things around even more. Yes, there was moments of total discomfort when hubby did not completely understand some of the therapy, and yes, Nickholis showed the family hope centre team his wild side. Some moments felt to me like I could turn into an ostrich and hide my head deep down the centre of the earth. But we serve an awesome God. And all unclarities were cleared up. Our son, being the tornado he can be, were totally understood by the team. All were good, all were understood….

The Family Hope Centre team is undoubtedly the most amazing team of specialists we ever met. They are understanding, they are accommodating, they teach and learn things that even I can understand them. For the first time in our lives we have an diagnosis, not only we have a diagnosis, but we have a plan of healing for our son. It is mind blowing to think that because of these people our son is going to have a normal life.

Instead of feeling helpless, hopeless, depressed. I’m feeling excited, motivated, eager to see our child finally having a future.

Our worst circumstances changed for the absolute best. Relationships is healing, the broken is being restored….

Sometimes the word thank you seems so infantile, sometimes It feels wrong to use such a small word with such few letters to describe one’s gratitude. How does one really say thank you for changing a family’s life, for giving one’s child a future?

The price tag around this life changing journey can be intimidating. At first it intimidated the living day lights out of me. But. I very soon came to realise that our God provides. And he looks after his children in the most miraculous ever imaginable. Not only did my whole life change. But my faith had been tested to extremes where I never thought possible. It took me al these years, all these pressure to finally give my whole life in His hands. We lived life, went on, basically just accepting everything. This journey forced me not to worry about the day of tommorow, but to believe heart and soul that we serve a Father who provides to everyone’s needs. A few days back on the farm, and we are still in awe. We are still mesmerized by the fact that our Heavenly Father provided our every need. Our hearts still full of praise for this life changing opportunity, for this miracle, for our son on a path of healing and restoration….

I walked many roads in my life. But the Family Hope Centre road is the one that I am the proudest, most thankfull for to be able to walk on. This road, is the road to a new life, not only for one’s child, but for one’s whole family.

I would genuinely advise any special needs parent to look into the Family Hope Centre journey.

IT WILL CHANGE YOUR LIVE

FOREVER

www.familyhopecentre.com

Attitude of gratitude

To hear one’s child speak, to see one’s child socially interact with other, to experience having a meal together with one’s child, to see one’s child flourish in school, TO GET A HUG from one’s child. To most people. This is as normal as waking up. But to autistic parents like us, this is something we long for everyday. Everything new thing our child does, causes celebration in our home. The smallest new word causes mommy to have her own party, and to tell every other special needs parent we know. To us, the slightest improvement feels like a huge milestone achieved. One small step for normal children, is equivalent to one giant leap for special needs parents. We have learned to become thankfull for the smallest of small things. We learned to APPRECIATE LIFE MORE. We have learned to become thankfull for the smallest things in life. We have learned to pray for things so many, many take for granted.

In my huge dislike of clichés, I can’t help it thinking about the one saying :”you really don’t know what you have until you have lost it”. And this, I have experienced more than I would have liked to.

To open a tap, and to get a glass of water. This is probably one of the things in life I took for granted the MOST. Such an easy task, one seldom think how LUCKY one are to be able to do something like that. I had the privledge of learning to be thankfull to be able to just this. Here in the Klein Karoo in a small farmer’s community, tucked away close to the Swartberg Mountains. Here, I learned to be thankfull for a natural resource so many take for granted. The drought here has taught me to start praising the Lord the moment I feel the smallest raindrop on my skin. Here I learned to be thankfull for what some others complain about. I so often hear people complain about their laundry getting wet, or their family day out being spoiled by the rain. I WISH laundry can get soaking wet, I WISH our family day out can be spoiled by the rain. Here, I learned to be thankfull for the smallest drop of rain, here, a rainstorm is a family outing for us, here we sit as a family staring in awe at the rain storm. Here, we get childishly excited if we open the tap, and there is suddenly coming WATER out of it….

Sometimes life on the outskirts of earth gets to me. Sometimes I feel uncomfortable being surrounded by nothing but Spekbos. Sometimes I feel negative being so far away from everything. Sometimes I feel cramped up living in the middle of a bush. Sometimes I just wish…. But when my pity party is over. I come to realise that in the Spekbos covered bush where I live there is one MORE natural resource we take for granted. AIR. Clean unpolluted AIR. A natural resource I wonder how many of us REALLY appreciate. With my visit to Johannesburg last year. The FIRST thing I noticed when I set foot on land was the quality of the air. My senses immediately told me that I am NOT in my Spekbos covered Karoo anymore. I literately smelled the harsh pollution in the air. My heart instantly longing for the clean, fresh, farm air I so terribly took for granted. Soon I learned that many family’s in Johannesburg have to use air filters. It had hit me hard realising that there is people longing for a natural resource, that I never even think about. I had to be without breathable air, to be thankfull for it. And again the cliché strikes! “You never know what you have until you don’t have it anymore.

So often we so terribly take for granted what other people long for. I have clean air. And that I learned to be thankfull for with each breath. We are suffering in the drought, for every drop of rain we praise and worship.

But there is things my heart longs to be thankfull for. A hug from my son, having a two way conversation with him, sitting having a meal with him, seeing my child play with another, my child succeeding in school….

THIS is things that so many don’t even know they have, because it comes so naturally to them. Sometimes I sit and think that parents with normal children is the luckiest people on earth. Experiencing things my heart wants so much that it actually hurts sometimes.

BUT. When I look past what I don’t have. I come to realise that I am ALSO lucky. I am blessed in a very unique way! My journey might not be moonshine and roses all the time. BUT my journey taught me to experience the finer, smaller, sometimes less significant things in life. My journey, has taught me to be thankfull for every letter my child can pronounce, to be thankfull for everyday day that he has not had an anger outburst, to be thankfull for every bite of food he is able to eat by himself… To be thankfull that my child is ALIVE.

We long for the big things in life, but we celebrate the smallest. Our lifes is not about taking daily life for granted, our lifes is about experiencing everything to it’s fullest. We see the big in the small, we feel every emotion to an extreme extent, we live harder, we laugh harder, we cry harder… We are special needs parents, and we have learned to have an amazing gift,called

ATTITUDE OF GRATITUDE

Why I see myself as a Protea…

The Protea. One of the most beautiful, interesting flowers there is. It’s beauty earned it’s spot as my ultimate favorite flower. Tougher exterior than most other plants, grows in somewhat harsh environments, is usually found on mountain ranges, and some is indigenous. If one looks closer, it has a beauty that very few flowers has, soft on the inside with beautiful pinkish in the middle. All of this is not the only thing that makes it remarkable. Some proteas need fire for their seeds to germinate. Some proteas bloom the most beautiful and most colourful after going through the ordeal of a fire in their habitat.

I like to see us special needs parents as proteas. We are not as commonly found as parents with normal children, we usually hold a front of a tough exterior, but we also have a soft, colorful interior if one dares to look a bit closer than the tough exterior we are showing the world, that acts as a mechanism to protect us from anymore hurt, just like the protea, we are facing mountains. But, just like the protea, us special needs parents have a unique beauty. We often get comments like:” you are so strong, you are so this, you are so that”. To the protea, living All alone on a mountain, one of it’s kind, it probally does not know it’s beauty. But to outsiders passing the mountain, the protea is one of the most beautiful flowers given to earth. This makes me realise that when someone tells us special needs parents how strong, how this how that we are, that they really mean it. Because in our uniqueness, we are a very special type, very often admired for our strength, for our courage.

When one thinks about a bush fire. One immediately think about fauna and flaura being hurt and destroyed. When one comes to think about the things us as special needs parents had to go through in our lifes, we often think how on earth did we survived that and is still standing, firmly in our habitat, facing our mountain. Blooming. Not dying. BLOOMING. Just as wonderfully miraculously it is, that the protea blooms at it’s most beautiful after it has been burnt. Just so is it, that us special needs parents find it in us to become more beautiful, more stronger, more courageous after each fire. We go through huge ordeals, heart ache and pain. But eventually we bloom. Shining hope to the world, showing strength and endurance. I personally, have been through many fires. The last few year and a bit through a few of the worst fires of my life. But I can honestly say that these fires made me stronger, it pushed my faith to where I never thought it could go, it made me realise that I CAN endure much more than I thought I can. My fires opened a whole new world for me,it gave me a complete new outlook on life.It made me realise that I am not just a rare flower facing a mountain. It made me realise that in my uniqueness, in my challenges, that I have a beauty, and a gift to give to the world. I always had a pet hate in outsiders telling me how this and that I am. But surviving my fires, I realised that I AM this and that and everything there is. To other flowers we ARE this and that. We are beautifully unique to people passing by.

My fires, has made me realise that my pain is almost over, and that I am being prepared to bloom like never before.

If there is anything my favorite flower has taught me, it is that,

through all the pain we endure, through all the mountains we face, through all the isolation we feel, through everything we go through,

That one day, we will realise that what felt like something meant to break us, was actually just preparation for us to reach our full blooming potential in life….

Grace….

As a special needs parent one of the biggest challenges is to keep standing while in the mids of a storm. To smile when you feel like crying a waterfall, to keep on fighting, when you are basically busy breaking. To find strength, time after time, to get up after falling. This is challenges us special needs parents face everyday.

We stand through the toughest storms. Yet we never break. We always get up. To me this is grace from God. And not like many often say, one’s personality.

Six years ago, we had our youngest son. We faced challenges from the moment he was born. Him being unable to breath, the doctor almost unable to save our son. Doing all he could. And miraculously getting oxygen in our son’s lungs. Happy to see our son, wanting to go home and to start a new life. We soon had to accept that mommy and baby is not going home YET. Instead of caressing my baby’s soft skin, I stared onto his body being yellow as can be. We had spent 18 days in hospital. No recovery for mommy. No welcoming to the family. No nothing. Just me and my baby Ill with jaundice. Me having to sit in a chair for 18 days, with sore, raw stitches from the cesarean done only a while ago. My baby boy having to endure painfull blood tests. His foot, smaller than my thumb, enduring needle after needle to take blood for testing . It was 18 of the worst days of my life. Or so I thought….

Today, 6 years ago our youngest underwent an emergency Pyloric Stenosis operation. At only 8 weeks old by the time of the operation, and because of the severity of his condition, the doctors had doubts if our son would survive.

We had spent the first 3 years of his life in and out of hospital. One thing after another.

Today our youngest, whom we almost lost a few times, is now a big and strong beautiful blue eyed boy.

Dealing with all that and having a boy whom has huge challenges is no joke.

Today, I am still standing. Going through storms and deep waters. Sometimes I am amazed by the fact that I didn’t get swept away by the storms. I’ve been through it all. I can explain jaundice, peloric stenosis, ADHD, side effects of medicine, autism, you name it. I can even draw a diagram to explain some of these. Not because I am a medic, but purely by the fact that life decided to see how much I can possibly endure.

Sometimes giving up seems like a comfortable alternative to the mountains I am busy climbing. But then with that thought, I look into my sons eyes, and realise that I am keeping strong for THEM.

I have to fight for them now. Now while I am still able to fight for them. If I am blessed to live till an old age. My children has to be able to do things for themselves, when I cannot any more. I have to do all I can, while I can, to ensure that my offspring has a future one day.

So many has told me that I have a strong personality, that I endure things that they never would be able to, that they don’t know how I do it…..Everyone of these classified by me as clichés. I think once you become a special needs parent, one begins to feel negative to words like that. I really have a disgrace towards clichés. Because all of those words is spoken through sympathy. Not empathy. Empathy would be resembled through a tap on the shoulder, a hug, a smile, or even just no gesture at all. To me, sympathy hurts. I feel uncomfortable if words are showered onto me by people who doesn’t have a vague clue about the challenges we face every day. As nice as the human race is trying to be by showing sympathy, it is really a thorn in the flesh to me. I much rather prefer empathy. Words coming from hearts that knows my heart ache and my struggles. Life hasn’t given everyone the same experiences. So everyone can’t express empathy towards every situation. But in my heart I feel in that situation, words unsaid. Is much better than words said through lack of knowledge and heart felt feelings towards my situation.

Life can’t be planned. We plan the route, but God determines the journey. I did not plan my life like this. I didn’t have time to prepare for this, I wasn’t born with a go getter personality. I didn’t know all of this. Life gave me lots of mountains to cross. Life gave me storms that I thought I wouldn’t survive. But somehow, someway I managed to survive.

It is not because of a strong this or a strong that. We are given mountains, and storms, but we are also given a heavenly Father whom goes through all of this with us.

Yes, as special needs parents we get tested through things that seems like it is going to break us, but, with God’s grace we get to stand through it all.

Like one of those things many people say:” If God puts you to it, he will put you through it.”

Today I am tired, exhausted keeping on trying not to get swept away by the storm. But I also know that God’s grace will get me through….

Our first Christmas tree….

To many this might look like a dull, rather ugly, strange out of the ordinary Christmas tree. To us. It is a symbol of hope. To us it is a sign of achievement and victory.

Like the tree, our lifes is strange, out of the ordinary and we were filled with ugly experiences. But, just like the tree, we are still standing. Just like the tree we have HOPE.

Dry, with green tinsel resembling the new life we are entering. Red tinsel, the love we have in our family. Two snowman, which resembles our children ordinary looking. But if you pull the snowman’s switch, it lights up, flickering signs of hope for the future that our children has. We pulled that switch, and now our children is shining lights of hope, of a normal life. Then, there is one string of father Christmases, resembling our one boy who still believes in father Christmas. Our Austistic boy is a realist, an analyst, who in his own language explained to us in detail his theory why there is NO such thing as father Christmas, and why he does not like it if we are lying to him. A Christmas card our son brought home from school, perfectly placed on a branch, symbolizing the new era our son is entering in his scholastic journey, a card of hope, a card showing the progress our son has made so far on the Family Hope Centre program. And then there is the red star. Symbol of our Heavenly Father’s love for us. Him who is holding us all together, giving us this hope, giving us this new future, giving us this new tree…

This is our first tree in 8 years. Resembling so much more than Christmas. Resembling our lifes, our journey…

Year after year we tried to have a Christmas tree. Year after year we tried to get awnsers for our disabled son. Year after year we attempted putting up a tree, trying to make life beautiful. But as in our journey of trying to heal our son, we miserably failed. Our son destroying the tree, breaking each branch and decoration, each doctor giving us false hope, false awnsers, breaking our child down with medication after medication.

We longed for the beautiful conventional Christmas trees displayed in every shop, shown on every photo. We longed for the conventional family life. We longed for the beautifull christmas trees everyone is showing of. We longed for being able to to brag about our children’s achievements. We longed for a sense of pride Normal, with no outsiders breaking down our beautifull, our dreams. Our longing, drove us to keep on searching and fighting to make our heart’s dreams come true.

After 8 years we finally found hope and help from a foreign country, we finally found a foreign tree. The first few steps into our Family Hope Centre journey was exhausting, difficult, heavy, we almost gave up, but the promise of the normal, beautiful life was too attractive to leave in the foreign. Just like the tree, heavy, difficult to get into the home, we wanted beautiful, we wanted normal. Today we have the Family Hope Centre and the tree in our home. Not looking back for one moment. All our trouble, all our perseverance, all our going on, when life pressured us to give up, all our wiping away the sweat and tears, paid of like we could ever imagined….. Our son is showing progress, he is speaking words, he is calm and self controlled, he has HOPE and a FUTURE. Our tree is sparkling and standing. We finally have beautiful, and the conventional life we are dreaming of is blinking at us.

Life isn’t always perfect. Just like cats harassing our tree of hope, there is the few bumpy roads on our new journey of healing. But there is also the knowledge, that the cats will grow up, and leave the tree alone. That the bumpy road will soon become a journey of smooth sailing into a new life, the life we so desperately long for.

Today, we are thankfull for a future blinking at our son. For a tree, STANDING.

Today we are thankfully to know that our lifes will get easier, our roads less bumpy and out tree, more BEAUTIFUL….

The science of SUGAR simplified.

As a special needs parent there is lots of guidelines to follow. Don’t do this, do that, avoid this avoid that, and te list goes on. One of the biggest things for us special needs is parents to comply with is our children’s nutritional needs. The slightest morsel of the wrong food can turn one’s child from angel to gremlin from outer space.

I am no clinical or medical expert. But I do have lots and lots of experience in being a special needs mom. And if there is ever one lesson that I had to learn the HARD way, it is that sugar has the potential to transform a child into a wild circus monkey.

Pure white, innocent crystal of sweet bliss, that basically turns anything into a yummy explosion of comfort in the mouth. Good in the mouth, good on the soul, secreting happy endorphins. Sweet, sweet bliss.

UNTIL

The sweetness’s mask comes off. And shows it’s true colours. Sweet innocent bites of goodness, becoming poisoning molecules once swallowed. Causing absolute havoc in a child’s body. Causing the sweetest angel to turn into a uncontrollable, hyperactive circus monkey litterately climbing through windows, climbing over and under it’s body encounters. Yes, the sweet little boy in the car is my boy, innocent, good, and naturally sweet. An angel. Any parent’s dream. But along came a little sweety, and turned my angel into a circus monkey from space. Climbing over the veichle, making noise, going WILD. NO. I am not a bad parent for not being unable to control my wild circus monkey. YES. I am a VERY bad parent thinking a little sweety during Christmas wouldn’t do any harm. Just like many things in life, looks can be deceiving. NEVER underestimate the damage one of those beautiful wrapped christmas chocolates can do to a child. Especially a special needs child.

My experience has taught me to rather feel bad saying no to anything sweet and spectacular, then regretting seeing my son bursting with side effects, feeling uncomfortable in his own body.

SUGAR….

Sweet on the mouth and soul,

Bitter on the body’s mechanism…

A special needs bubble defined…

Most of us know the story about the boy in the bubble. But I wonder how many knows of the mom in the bubble. Every special needs parent can relate to this figurative bubble. A bubble holding one back from the outside world,a bubble keeping one in one’s circumstances. It is a feeling that very few seems to understand. Just like very few understand the life of a special needs family, the same way most people does not understand the bubble one gets drawn into. It is like you are watching the world from a bubble, you see everyone, you hear everyone, but you just don’t have that capacity to stretch out and interact with life going past you. It is a place where I heal, where I find myself, and where I come to terms with things going on in our current season of life.

Being captivated in my bubble, does not describe my personality, nor does it explain my feelings towards people. It just means that I am taking time out from real life. If you are really lucky, you have a friend or two who understands your bubble. Who understands it and respects it. But mostly a bubble is something difficult to explain. It is difficult explaining to someone who does not live in my situation, that I sometimes need time out from life. It is a long and lonely road most of the time being a special needs parent. It is probably one of the most exhausting encounters any human being on a journey of life can experience mentally and physically. It is not easy. But we find strength. And if our strength runs low, the bubble is there for us to go to and make sense of life. I get an uncomfortable feeling that my bubble caused me to abandon friendships, that my bubble caused people to question my loyalty towards them. Not being able to explain my bubble to them.

Sometimes I leave my bubble. Picking up pieces of abandoned friendships. Feeling guilty about time only spent on myself in my bubble. And sometimes, if I’m very quiet, please just know: it is not my personality, or me imagining myself that am in an higher hierarchy. It is just me taking time out to make sense and heal. One day my bubble will be broken forever. But until that day, please watch over me while I am finding comfort in my bubble, looking at life passing by. Not forever, but until my heart can tell my hands it is ok to stretch out to the outside world again. All bubbles eventually break. Mine will too….

Every special needs parent needs a bubble. Every special needs parent needs a time out and a space to heal and make sense of life.

Every special needs parent needs at least one friend who understands your silence.

Lauren Strauss, thank you for hearing my silence, and for singing on my behalf when I have no voice to sing the song of life….

Trading darkness for light…Our story…

°Pregnancy. One of the most beautiful times of any woman’s life. Birth, bringing one’s new born into one’s home. One of the most beautiful events in any family’s life. A fairy tale most woman dream of. We experienced it all. Except instead of living the fairy scenario, we encountered mountains. Instead of living the conventional fairytale life, we were given a life full thorns, and sharp edges.This is something no one, or nothing can prepare you for. We dreamed of a life with a family,living happily ever after. But our dream became a nightmare. We were thrown with a huge curve ball in life, but somehow, with the grace of God we managed to be still standing.

°Quickly get up, get your tissues and a cup of strong coffee, because today I am going to take you along on our journey:

Being pregnant for the first time held more challenges to me than I could ever imagine. Not being able to keep in any source of nutrition, and also being very ill in a time where swine flu did it’s rounds. And battling with high blood pressure with pre eclipsia knocking on my front door of health. Spending most of my 9 months ill in bed. Made my pregnancy one of the worst experiences. Seeing, feeling your baby boy kick, was the best feeling on earth, but my health hanging over us like a dark cloud, over shadowed all the joys that I was supposed to live. It was the most bitter sweet time imaginable…..

29 September 2009, 00:15. Our first born came into the world. Proudly naming our son after his grand father, whom passed away at a very early age, whom he will never know. We named him Nickholis in memory of his grand father Nick. Knowing that if he is looking down from heaven, that he would be proud of his grandson carrying his name. We had hopes and dreams and aspirations for this boy with the special name. But soon the darkness of post natal depression came to cover all our dreams, all our hopes, all our aspirations. It was one of the most difficult, most lonely time of my whole life. It was a battle that I fought alone. It was a battle that I almost lost. In my seeking for help, I soon begun to start my little black book of doctor’s never to visit again. Going to the doctor for help, with no one knowing of my condition. I was forced to overcome the darkness myself. Usually a doctor is someone who helps, who supports. I walked out that doctor’s room, being more lonely than ever. Thinking back, the scene plays of in my head again. Me feeling ashamed, scared, desperate. Trying to tell the Dr my new and frightening situation. As I was trying to utter my condition. The Dr sat back in his chair, arms folded, with a grin on his face, murmuring the words: “so you want to commit suicide?”. Me never mentioning anything like that to the Dr. He didn’t help me, he didn’t assure me, or made my condition better in any way. He left me with totally over priced medication (which didn’t work), and the most undescribable sense of loneliness ever imaginable. Being a first time mother, I wanted to look like I had it all together, I wanted to make my husband proud with my parenting skills. I felt ashamed, and fought the post natal depression battle all by myself. No one knowing. Looking back on that season of my life I realise that although I thought I was alone, and that I had no physical support. I was not alone. My heavenly father was holding his hand over me, he was accompanying me while I thought I was all alone fighting one of the worst battles any woman can have. He carried me where I saw no road to walk. He took me out of my big black hole of post natal depression, and he made me a survivor. He gave me life, and a purpose. If it wasn’t for our Heavenly father, I wouldn’t be here to share my journey with you.

I want to urge anyone who may be experiencing baby blues, post natal depression, over excessive negative feelings, crying and emotions that one cannot put in words, after giving birth. To please go and speak to a medical professional about it. And if one professional does not give you the adequate help and support, please go seek help of another. Because many may not be so lucky as I was. Many has lost this battle, and many will without medical assistance. The struggle of post natal depression is real. And it is nothing to be ashamed of, neither is it too late to seek for help.

Mostly having a new born in the house is something to get used to. For us it was much more than just a new situation to get used to, for us it was this and much more. For us it was questions going around in our heads that we were too scared to put in words. Too scared to ask. Because the moment we were going to put our thoughts into words, was the moment that we are going to admit that there is something wrong with our son.

As a baby Nickholis barely cried. It was strange in someway hearing everyone speaking about how their babys is crying non stop, whilst ours barely made noise. Some said we are lucky, some said Nickholis is a very good baby. But in our hearts we knew it is everything except him being a good baby. It almost was like having a new toy, one seeing that the toy is broken. One knowing there is something wrong. But one is too scared to look why the toy is broken, because of the fear that one will loose the toy and live without it forever.

The first time our son screamed his head off was a bitter sweet occasion. Hearing him cry was a sign of hope to us that we may have a normal child. But the crying went on for hours, and us listening to the sounds of hope, turned into us taking Nickholis for his first visit to the GP. The diagnosis was purely a little bit of ear infection. But something else worried the Doctor…. Without saying a word, he took out his camera, and asked to take a photo of Nickholis. I felt like the proudest new mom there is, and I felt like the photo was going to be so impressive that is going to appear on a magazine cover. But little did I know…. A phone call from the same doctor who took the photo, with a request to come see him urgently, changed our lives forever. It was a dark and weary day, the Doctor handed us the photo and a letter to go see a pediatrician….

With hopes in our hearts we went to see the first pediatrician. All hopes immediately broke when the doctor measured Nickholis’s head circumference, and requested an urgent CT scan to test for hydrocephalus. According to the pediatrician, there was a big chance of our son having fluid built up in his brain.And that I would have to stay in hospital for a while to try to drain the fluid. Preparing for the CT scan was an very traumatic event, nickholis having to get an inter veinous drip for the anaesthesia, so he can lay completely still during the CT scan. Miraculously the CT scan tested negative for hydrocephalus, and we went home together, over the Outeniqua mountains back home. Just to encounter more mountains of live…

As the time went by, we saw more and more red lights as our son didn’t reach his milestones. Not speaking, not walking, not doing things other children his age does.

Our sense of deniel, turned into an 8 year long journey of seeking for help and awnsers for our son. It was the longest most agonizing 8 years of our lifes. Wanting awnsers,seeking for awnsers, traveling the country for help. Getting no where. At the age of 3 a pediatrician prescribed Respiradol to help with the apparent fact that our child is hyper active. Nickholis being allergic to basically almost every type of ADHD medication there is, meant that we basically tried every medication available. Everyone with it’s own side effects. Eventually, involuntary getting him hooked on two types of high dosage medication. We encountered wonderful caring doctors, and then we encountered doctors who just couldn’t care less and easily secured themselves a place in our big black book of doctors. We searched near and far. Chasing help for our son hundreds of kilometres from where we live. Eventually we ended up visiting 18 doctors, had two CT scans and one MRI scan done, there was blood tests done for every syndrome and disease possible. We visited countless types of therapists and went through a lot of pain and agony in search of our son’s healing. No matter how hard we tried we weren’t able to find help or awnsers. We ended up with a truck load of medical debt, and a file full of reports. Some saying this, some saying that. It was words on papers that meant nothing. It was papers full of darkness, it was our down fall….

We fell deeper and deeper into darkness, hopelessness, isolation and our family was busy deteriorating bit by bit.

I get excited to think about how amazing our Heavenly Father is, and in which mysterious ways He works! I feel like a teacher gathering her children for story time by the thought of knowing what I am about to tell you next!

Did you know God even works through Facebook?

It was a Sunday afternoon, when my phone notified me of the friend request that was going to change our lives as we know it. After looking at the stranger’s profile for 3 days. I accepted the request to connect, I accepted CHANGE into our lives.

A life changing phone call from the director of the Brain Child Fund was the first light we had seen in 8 years. Suddenly we had glimpse of hope.

Upon telling him that I usally block strangers friend requesting me. He told me THAT SOMETHING JUST TOLD HIM TO CONNECT WITH US. I get childishly excited to think in which mysterious ways our Father works! Nothing in life is ever an accident. Not even a friend request. Everything on this earth happens for a reason!

With God’s amazing grace and a donor to whom I will be forever thankfull, I attended the Family Hope centre’s Parent Training Conference in Johannesburg. This changed our lives in the most unbelievable ways. Nick has already shown so much progess, only 2 months on the program and the school already is questioning his sudden progress. His 4th quarter report card is the most wonderful thing I held in my whole life. His report card showing proof, showing progess!!! Suddenly we can take Nick into the public. Suddenly we don’t have to be ashamed or scared about the damage our son might do. For the first time we have a Christmas tree that is standing, that Nick didn’t demolish in the first day. Suddenly our family is getting our lifes back. Suddenly we have hope!!! Our next step in healing Nick is to take him for an intensive evaluation by the Family Hope Centre team. This will change our son’s life forever. We are currently raising funds for this appointment through You Caring and Facebook. And we are extremely blessed to been able to pay the deposit for this appointment already. We are still in need of lots of dollars, but we know that our Heavenly Father will provide in his perfect timing.

Out of the darkness, into the light. Our family is busy being restored, and suddenly it is a joy to raise our autistic farmer….

www.familyhopecentre.com

www.brainchildfund.org

Scratching the surface…..

Look at the featured image.

What do you see?

Two dark souls? Two people covered in fear? Two people who lost the battle of life? Do you experience a negative feeling of sorrow towards this people in the photo?

Well, if so. I don’t blame you.

Because this is the way most of the outside world sees us. They only see us struggling, they only see our autistic child going bonkers in a public area. They only see us, desperate to survive through the darkness. They only feel negativity towards our situation.

Very few people in this world, has tried to look past this dark profile. Very few has the integrity to understand that this darkness might be something that they are sensitive to, very few has the understanding, the knowledge, to see past the dark exterior, and look into the fact that these might be people fighting a winning battle.

If there is one thing on earth that turns my cool calm temper into a bursting vulcano. It is someone who feels sorry for us. I know it is human nature to feel towards people less fortunate. I know it is human nature to unwillingly stare at someone that does not have the same abilities as us.  But. I also believe that everyone has the ability to look away, to keep quiet.  To rather keep one’s words unspoken, than said, and causing a huge stir in the different abled person’s heart. Although it is kindly said. And it is mostly said with a lack of knowledge and insight. There is things that one should NEVER say to ANY parent or person fighting a different fight than you, being different abled than you. I know that we are not walking around with labels on our backs explaining our journey. But, in my sore, hopefull  heart. I feel I wish one could just for once say:” congratulations, well done. I see you are still standing. I see you are not yet COMPLETELY grey. I see you have not chewed ALL your nails into their flesh. I see you have not given yourself completely over to chocolates. Well done for just getting up today. Good to see you are able to come out of the house today.” 

But no. The thing to say to parents like us is:” Shame. Poor boy. Oh mommy, I don’t know how you do it, I would never be able to do it. God knows to whom He can give children like that. He sends the greatest battles to the strongest soldiers. I feel so sorry for you. Why can’t he talk? You know what, I also know an autistic person, and his life is so bad. Don’t worry, you will get through it”.

Although it is mostly said in a kind manner. THESE are clichés, that would easily secure me in a nice evening of me-time in a police cell.  These words is one of the worst things one can do to a special needs parent. 

Next time you feel the urge to express your sense of sorrow towards a different abled parent, look away, ignore. If you really have to react to them, smile,tap them on the back with a gesture of encouragement. But NEVER use these clichés. 

It really hurts. And it turns  the coolest, most timid parent into a fire breathing dragon.


If our paths cross one day. And you can’t control your urge to react to my current situation. PLEASE just ask me if I had my morning coffee. Because this mommy might not have it all together that day, and maybe, just maybe, you would then meet her inner fire spitting dragon.


The road less traveled….

 On our journey called life, there is lots of roads. Some roads we choose to take, some we are forced to take. But either way each road has its own outcome. Our destiny is planned for us long before we are born. We can plan our road trip of life, but it is our Heavenly Father who decides which way we go, it is Him who decides if we go on the road planned, or if we take a detour. Sometimes a detour is something we don’t like, we don’t want, sometimes we try to take the wheel and try to steer our lifes in the way WE want it to go, but, If God took the wheel over, there is nothing anyone of us can do to prevent us from going the route HE wants us to go.

 On the occasion that we get to choose a road on life, one usually takes the road everyone takes, the tried and tested one, the one everyone knows, the one no one is scared of, the one everyone knows the outcome of.  

BUT WHAT IF ONE DECIDES TO TAKE THE ROAD LESS TRAVELED?

What if one takes the road to the unknown. The road that very few take. The road very few is courageous enough to take? What if one goes into the unknown without knowing the outcome? It could be a road full of bumps and unbearable scenery, and one can wish one didn’t take that route.                                      OR                                               one can take the road less traveled, and it could end up being the most beautiful journey of one’s life ……

 Having an an Autistic child we had one route, and one route only. The road everyone takes, the road everyone knows the outcome of. We traveled the known route for 8 years. Waving to other travelers, some having a smooth journey, some stopping at red robots, hoping for a certain medication or therapy to work, some traveling further and further to seek for help. To some the conventional road works, some reach their destination on this road. And some, like us, bumped into every speed bump, stopped at every robot, rode through every pothole there is, until we had a huge accident, and ended up in a dark place of helplessness and fear. For us the known road did NOT work.

While we were struggling to move forward on the known road with everyone passing us by, not waving, not stopping to see if we are ok, not minding us standing still on the side walk. We were left alone, for us to find a turn of of help. 

When God turned us around, and He put us on a road that very few know. He guided us, on a long and lonely road, we were scared, and sceptic. But our God never make mistakes. He is in charge of our journey now, and we are trusting Him for Him to bring us to our destination. Our two month journey was the best and most beautiful one so far. Instead of potholes and speed bumps, we are experiencing progress in our son, we are seeing sun rays instead of a dark tunnel, and where everyone on the conventional road passed us by, here we have passengers with us, amazing fellow special needs parents, who hold our hands when the mountain looks to big to pass. It is a beautiful road full of hope and green fields, the scenery is full of testimonials that one day we will also get to our destination, being able to say our son HAD autism.

Today’s song from my heart comes accompanied by a photo. The photo shows the road less traveled, unpaved, full of bushes, and it is intimidating to think one has to go on that road, where one can’t even properly see where to go. With only promises of a beautiful destination at the end of the road.

God redirected our life journey on this road, with no one with us to go on this journey. But we trusted Him, and we had put our son on that road. Him being in front, experiencing most of the beautiful scenery of success, us driving him to his destination with our GPS, our Heavenly Father. And just like any road, it is a road that has it’s moments of worries and fear. Our son is currently on the beginning of this road, and as the photo proofs, it can be a shaky journey. But it is for sure the most beautiful road we ever got take.

Everyone has to travel to get to their destination in life. Some roads we can choose, some roads our Father chooses for us. Some roads is easy, some roads is daunting.

But I can say for sure, the road less traveled is the most beautiful, most promised one.

Don’t just survive on your journey of life. 

DARE, take roads less traveled, and LIVE.

Life is too short just to survive sticking to the conventional ways of things. 

LIVE!

The day our son got a friend.

It was a late afternoon. The sun was saying her last goodbyes as she winked to us behind the mountain.After a day of work and play I sat outside with my two boys. Armand only being a baby, and Nickholis only 2 years old. We enjoyed the last bit of sun rays of the day, Nickholis pretending that he is a farmer, Armand enjoying his tummy-time. I was done for the day, counting down the seconds till bed time.  I had no energy for nothing except my boys. While tried to sit for a minute to rest my weary body, our beloved Jack Russell, Jock, wanted to play. There just wasn’t time or energy to spend on a dog jumping up and down, scratching my flesh open. After all, there is lots of time to play with this little hyper active K9.  Taking the kids into the home on Nickholis’s request for some water changed our whole lifes.

Seconds after entering our home. I hear the most terrible screeching, agonizing cry I ever heard a dog cry. Running outside, I see our beloved Jock, who seconds ago wanted my love and attention, stiff, choking. At first I thought he ate something that is stuck in his throat. Me almost giving him CPR, trying everything I possibly can, but sadly realising that a snake had bit him. It was one of the worst experiences, and feelings of my life. A dog whom I loved like a child, dying in my arms, taking his last breath. All because I wasn’t there for him when he wanted some affection.

I went on a major guilt trip. Thinking that if I gave my last bit of energy to play with the dog, then he wouldn’t have encountered the snake who took his last breath. But, then again, I realised that we had God’s hand over us. If He hadn’t created a thirst in Nickholis’s body, urging Nickholis to want some water, then my children most probally would have been the victim of that sly predator lurking around. 

I realised that one 

MUST CHERISH EACH MOMENT,

 LIVE LIFE TO IT’S FULLEST,

 NEVER TAKE AN OPPORTUNITY TO  LOVE  AND AFFECT  FOR GRANTED,  

   because not a second is promised for       anyone of us. 

Not even for a loving dog named Jock….

We went to bed that night, our hearts full of grief, a dark cloud of sorrow hanging over over our souls.

Another day, another opportunity for Nickholis to plan his farming empire. When we hear a knock on the door. My husband smiling like he got awnsers to Nickholis’s neurological problem. A big smile like that could only mean one thing! He has found a miracle to heal our son.  But, my mind full of desperation and naivety was wrong.  The big smile turned into a glorious announcement that he has found another dog for us, and that we are going to fetch it!

We took on the gravel road to town, as if it was the road to the North Pole to meet Father Christmas. With hearts will of anticipation, I realised there was a space open in the bakkie. Jock always had this way of climbing up into my shoulders, and to sit between my neck and the head rest. That space that Jock kept warm was now ice cold….

We enter town, Nickholis making sounds of happiness. Something great was going to happen. We stop, Nickholis the first one to run into the stranger’s home. And without anyone making any remark or showing any negative response, Nickholis came out running with a snow white Jack Russell, a dog he had chosen himself out of a batch of other hopefuls.

We always admired the white Benguil Tiger, named Nevada at the Cango Wild Life Ranch.  A huge, snow white, fearless and strong, but also extremely graceful tigre. One of the most beautiful creatures we have ever seen. So when it came to giving our snow white Jack Russel a name, it was a clear and easy choice.   

And so a long and fruitful friendship started between Nickholis and his dog Nevada.

For once, our isolated, non-verbal boy had gotten a friend, a partner with whom he could share his daily struggles, his ups and his downs.  We soon realised that Nevada was heaven sent to our son. This dog enduring more than I think any other dog would have. Nevada became his companion, litterately doing everything with him. Nickholis carrying her around everywhere he goes.  A very strong bond grew between these two. As if Nevada knows that her purpose in life is to comfort this Autistic boy. I honestly think Nevada is the most carried around, most travelled, most bragged about dog on planet earth. Nickholis won’t move without his dog, not going anywhere without her, and then of course, Nickholis is like a proud father, showing of his child to anyone everywhere.

But as we all know by now, life does not consists of one big box full of caramel chocolates. Their has to be that bitter orange chocolate making it’s appearance, there has to me that thorn in the road one occasionally has to step in. 

Living on a farm, we have to sometimes deal with unwelcome visitors. These visitors being as disruptive and unmannered as possible.

 I am speaking about Mr B.aboon and his extended family. Visiting us at the most inconvenient times ever, without any announcement.  My children grew to know when the baboons are close by, knowing their unique sounds they make. And once you hear the baboon calling, or you hear your child announce it. Then you know its time to pray. Not because the baboons is going to destroy every last bit of dry lusern left, but because you know Nevada is going after them.  It is like a scene out of some special effects movie. One can’t think that something like this can really happen. 

While our big, fat,tough, sheep dog and our Fox terrier is hiding behind me, scared as can be for the creatures running around like they own the place, our little,harmless Jack Russell, Nevada is going after the baboons. Running after them, barking and growling, with each step she takes almost touching a baboon, almost biting it with her barely noticeable teeth. 

Suddenly you are an outsider, watching the special effects movie play in front of you. No matter how hard your body and soul wants to go and safe that dog from a sure ordeal, you can’t do anything but pray. Seeing only a white spot as Nevada triumphantly dissapears into the mountains, later on only vaguely hearing her significant type of barking, the white spot, my son’s best friend. All gone…

It’s quiet. And the war scene that played infront of us, all gone. With only a heavy sense of fear left. 

When suddenly you hear baboons screaming, a loud,uncomforting sound, that lets one think about a woman screaming for her last hour has come. A sound that sends shivers down places you didn’t even know you have.  And then, then you hear your small white dog, thinking she is the bengail tiger she is named after, barking her distinctive bark, trying to let the baboons know that she means business. And then the climax!  The most terrible sounds I have ever heard in my whole existence. And then QUIET…..

Sometimes I don’t think one has really lived. Until one heard a non-verbal child, praying to God using every sound and noise he can utter from his severely underdeveloped mouth. To safe his dog. It is a scene that I will remember forever, having more and more emotions about it each time I think about it. On his knees, in the the dirt, asking his heavenly Father to save his dog.

We all just stood and stared at the mountain that was once the war scene for Nickholis’s friend, and the baboons.

My hopes all gone of ever seeing Nevada again. Me getting ready to go see if the SPCA has a replacement.

When suddenly I hear:” mommy!!! Nevada!!!!”    

Our warrior dog, running through the bushes as if she was gone for years, the white spot beginning to appear clearer with each leap she takes. Coming back totally unharmed. Not a scratch or a hair missing. 

Never underestimate the power of a name one gives to a pet. Our small, harmless Jack Russell frequently adapts to her alter ego, the fearless tiger she is named after.  Note to myself: my next pet’s name will be something like muffin, or fluffy. My nerves won’t last having another bengail  tiger in the house.

Our son prayed a prayer that only our Heavenly Father could understand. Our Father listened. And He brought back our son’s friend……


Shopping struggles with my autistic son

 Up till know, I gave you all some back round about our lives. Now that you probally know us and our journey. I want to tell you about our autistic farmer. He is the cutest, friendliest farming apprentice there is. Following every step his father takes, more into farming than playing like cars and lego like his peers. Waking up every morning with his first words speaking about the farm. Almost like he was busy with a conversation about farming, carrying on with the conversation as he wakes up. 

As cute, and nice as this little farmer can be, as much is he a very, very difficult customer in a shop. 

I try avoiding going to the shops with him. But, occasionally, I have no choice. And then it is like surviving a war or an  Apocalypse or  something.

Our dear son is extremely sensitive to sound, light and smells. And he is totally social unacceptable.  Mostly when entering a shop, Nickholis turns into a DOG. Not any dog, a ROTWEILER. Trust me on this, our son is NO Maltese poodle. He gets on his fours, making barking noises, growling, biting my ankles. 

There is literately only one shop I can take him to. Only one shop who’s staff learned to know nick through trail and error. They know my rotweiler and everyone greets him friendly by his name, ignoring his behaviour. Us having our route through the shop. Everytime the same route. First stopping at the cold meat. Nickholis being confident and out spoken, not knowing he has a speech problem. He asks in his own language that basically consists of sounds. For R10 worth of olive cold meat. The Lady behind the cold meat counter knows Nickholis, and she most probally starts taking out his order when she sees him. She is a lovely lady. Sometimes she asks Nickholis how his animals are doing, sometimes telling him that she missed their chats. Speaking to my son as if she can understand every word that is coming out of his mouth. He gets his meat. And they both greet each other a friendly good bye. Nickholis getting a huge confidence boost, each time he bought his own meat and having an conversation about the farm with the friendly lady behind the counter. I sincerely hope this lady gets blessed one day,for her wonderfull attitude and deeds towards my son.

BUT THEN. Now and again there gets someone newly appointed at this shop. SOMEONE WHO DOES NOT KNOW NICKHOLIS.

Oh goody!

I enter the shop, with my rottweiler 10 meters already in front of me, I notice this newly appointed security guard. And I ignore him. But he does not ignore us. Following his duty to the point. Going after customers that behaves in a strange manner.

” Madam, can I help you. Madam, are you OK? Little boy, stop doing that, little boy, listen to your mommy”  Madam this, madam that. Following my every step, trying to tell Nickholis to stop his outrageous behaviour. I ignore him. Stopping about 7 times, to tell him that I am OK, and that every thing is OK. Maintaining my cool, calm attitude, I proceed with yet another shopping trip from hel, the security guard almost touching my heels as I walk.

Stopping at a shelf, to read a label on a product, the security guard stops as well. Nickholis the rotweiler does not stop. He is running around all over the place, while I’m trying to read a label, trying to get rid of this annoying guard. 

With the umpteenth time I heard the word “madam”. I flipped. Luckilly I had my coffee that morning, so I flipped in a way that didn’t almost secure me an overnight in a police cell.  But I flipped! My nice cool, calm tone turned into cruella de Ville. Asking the guard to leave me alone so I can just finish this shopping trip from hell.  My words meant nothing to him. He glared at me with foggy eyes. I clearly saw that the lights of the home was on, but the occupants of the home moved out LONG time ago.   After him just staring at me, he went and try to stop nickholis from behaving the way he did. I put the product back on the shelf, walking to him as if I’m a contender in WWF RAW. My mouth opens.  ” MY SON HAS AUTISM!!!! LEAVE HIM ALONE!!!!!”.

After letting it out in my angriest voice possible, expecting to see an audience. 

The guard looks at me with the same foggy eyes, now more confused than ever.

” EH, MADDAM…. WHAT IS AUTISM???”

I felt like loosing it. This guard can be extremely thankfull we weren’t in the isle where the brooms are…..

I took my rotweiler, leaving my trolley as is. Charging for the exit.  Replacing a broom, and having to pay bail money is an expense that I didn’t bargain for that month….

The day the boervrou went to the city

(*boervrou* – a word to describe a woman who lives on a farm, and is capable of doing farm – related things. Also who can bake bread,make preserves,jams,and knows how to survive not having a convenience store around the corner. And then of course, a woman who has the patience and love to stand by her farmer husband, who works very irregular, long hours.)

That’s me. Yes. I qualify as a boervrou by now. And yes, I went to the city…..

Going to the Family Hope Centre Parent Training Conference was a really big thing for me. Physically and emotionally. First I had to prepare and pack almost our whole home for my husband and 2 boys going to Hartenbos while I was in the big city. My boys fled from reality at home with no mom holding everything together, to go to see if the beach is more fun than the farm. I actually felt bad for my husband. I knew he was in for a time of his life. I expected him to be old and grey upon my arrival back home. And in between making sure my boys is prepped and ready to go. I had to prep myself. More emotionally than anything else. Not knowing what to expect from this outing, rather scared, last visiting  Johannesburg about ten years ago. Knowing that I now have responsibilities, and that I have to get back in one piece. Reading about the Ubers burning down in sandton wasn’t very comforting either. 

With a brief farewell, me being the only one with teary eyes, I say I quick goodbye, my boys barely noticing that I’m leaving, them being too excited for their holiday with dad.

Sitting in the departure hall already felt like a vacation. Being there all alone, knowing that I am in for 4 and a half days with no one to look after or to worry about, was one of the most strange feelings I had in a very long time. It felt strange. I felt like calling for my mommy. I was in for a life changing journey. As the airplane started moving, I knew this was it. I got the opportunity of a lifetime, to go change my disabled child’s life.

Immediately after putting my feet on Jo’burg soil, I noticed the air. It wasn’t the clean, pure air that I am used to. It felt like I was breathing in something else than oxygen. And just there and then, before I left the airport, I realised how privleadged I am that God has put me in the Klein Karoo.  

Meeting with an old school friend for cuppachino’s was the best start to my Jo’burg adventure. But soon that feeling of security went out by the window, as it was time for me to proceed on my journey.

I get of at Rhodesfield Gautrain station. All I see is BUILDINGS . Clinging to my luggage, I hit the first building. All I see is wide open spaces. Not a human being insight. Wondering when I will see this Gautrain I read up so much about will appear. When suddenly I find 2 people, only to learn that I am in the METRO RAIL station!!!  I turn around and confidently walk as fast as I can to get out of this forgotten place called the metro rail. As I was walking, I suddenly hear voices, a group of ethnic men a few metres behind me. I get cold, I get hot, I feel an ice cold shiver down my spine. Thinking that today is the day that I meet my maker and become a statistic. I remember praying the loudest prayer of my life. I think my dear Lord was probably thinking that I was shouting at Him for help. I prayed. And then I MOVED! Keeping in mind that I must look confident, fearless, not an easy target. But my body didn’t agree with my mind and I suddenly turned into Forest Gump, running the fastest mile of my life. Seeing the door, walking through it, knowing that I most probably escaped a certain disaster, was like the ocean on my soul. Thankfull to be able to say that I saw the metro rail station, THANK FULL TO BE ALIVE,with a sense of accomplishment, I enter the Gautrain station.  This was a very uneventful trip for me, me basically dreaming about the conference ahead of me. It was a dream come true…

The train stops. I get my first sight of the famous Sandton My first thought was that this is a glorified ants nest. People, people and more PEOPLE! Just walking, everyone in their own direction. No sense of the peacefulness that I am used to in my small town. Clinging to my plain black sling bag and luggage  I enter the ants nest, ready to smile at anyone wanting to approach or attack me. Following my dear uncle overseas words that I must cling to my handbag, and be friendly. Then all would be fine.  Three steps into the ants nest, it was time to turn around and seek help.  Time to ask one of the many security guards stationed almost everywhere  to show me where my hotel is, which is apparently only 30 metres from the Gautrain station. 

Tired, relieved, excited,I get into my hotel! Finally! Safe!! I made it!!! 

OR DID I????

I enter my room. And all I wanted  is to charge my phone, message my hubby,and DRINK SOME TEA!

But nope. Life had other plans.  I try to charge my phone. Nothing. So tired, dehydrated and irretated I go of to buy a phone charger.  Sandton being popular for being expensive, I soon learn WHY this place got that reputation. R500 for a phone charger that costs R30 in Oudtshoorn.  My refusal paying that price made me realise that I will be phone-less for the next few days. Luckily I got to fully charge my phone for next to nothing at a vodashop. My first few hours in Sandton, STUCK IN A VODASHOP!    Upon exciting the mall, I get a huge fright! It is PITCH DARK! Too scared to move I enter a wonder world of lights,pleasant sounds, and an atmosphere that reminded me of our  town’s local art festival. I was amazed, forgetting about my fear, inhaling the moment.

In my hotel room. I seriously questioned my own IQ. And was wondering how on earth I was capable of passing grade one, nevermind attending a conference about the brain. THE POWER SUPPLY OF THE ROOM WORKED WITH A CARD. My charger never was broken….

Next morning I was ready to take on the world. Instead of using the shuttle to the conference, I decided to walk to the conference, explore, see, inhale, Jo’burg.Not having a clue where I have to go, too scared to take out my phone and use Google maps.  I enter the city like a brave soldier. It was peak traffic! Traffic! I felt at home! My soul came back to its routes! Cars everywhere, I loudly ask a traffic officer 2 lanes from me where I must go.  When SUDDENLY! I hear an ethnic man asking: ” Madam,you going to the Ballaika?”. So in shock that I can’t think straight, I utter the words, yes. And there I went. Boervrou, walking in peak traffic with a man I never met before, having small talk. Him telling me that he works close by where I must be,and him telling me more about the city. We exchange notes about each others lifes. Walking as if we know each other forever. Suddenly that guard I use to keep people in a distance strangely dropped, speaking to this stranger whom I believe God had sent me to show me the way.  It was strange seeing this total stranger wanting to know if I will be ok. Waiting to see that I enter my destination safely. It was strange, but I believed it was God sent.

The conference shook my whole world. I felt like I was sitting at the edge of my seat the whole time, taking in as much information possible.

While lunch looked like if I was attending a weight watchers bootcamp, my husband challenged himself to see how much junk food him and the boys can consume. I underwent a total mind shift. The conference changed our whole world. 

Living in the city for a few days was refreshing. I came back to my roots. My soul enjoying every moment of it.But, I have changed, I have turned into a boervrou.  I tried very hard to look for the luscious trees that I am so used to. But there was only buildings and people to find. My heart ached, I missed the spekbos, I missed staring at the moon from my bedroom window. I missed the Karoo….

 On my second day in the city, my sense of fear was completely gone. Getting up very early so that I can do some sight seeing before conference. Walking in Mandela square, camera in my, hand, ready to capture anything of interest. My sight seeing took me, to nelson Mandela mall, Sandton city, walking there all by myself, no sense of fear, not a person insight. Beside the fact that I completely lost my way, and most probally would have ended in Bloemfontein if it wasn’t for friendly, helpfull security guards .  It was a good experience. 

I went back home. Feeling like a million dollars. Educated, hopefull,sparkly eyed, happy, knowing that my child finally has a future.

Johannesburg has this reputation of being dangerous, and the daily news makes one petrified by only thinking of the city. But, it is clearly a mis conception. I can’t remember when last I encountered so many friendly, helpful people, and it is definitely a safer place than what the media wants us to think.

The boervrou went to the city.

Not only did she come back in one piece. 

She came back a whole new person.

 

Finding hope

 Today I want to do something I interactive. If you ever experienced South-Africa’s load shedding, then this would be an rather easy task for you.

I want you to read, and then close your eyes and then IMAGINE.

*It is pitch dark,it is hot and humid,you can’t see anything at all. You hear your child crying, screaming for help,you hear he is in pain. But he is at the other end of the corridor. You try to get to him to help and comfort him. But you can’t. With each attempt to get to him,you stumble,you fall.  The path to get to your child is full of big stone formations and thorns. No matter how hard you try you just can’t get to your child desperately screaming for help. You end up hurt, deteriorated, and you feel like your last hour has arrived.

When SUDDENLY!  Your phone rings. 

You stretch out to your phone with your very last bit of energy. You barely have oxygen in your lungs left to speak. But you awnser.   As you awnser, suddenly a light appears, and the light gets bigger and bigger. Suddenly you can see where to walk. Suddenly, you see your disabled child, in a worst condition than ever. But you see him! You finally see a route to get to him to go help him!   *    

I lived in this scenario for many, many years. And I took that phone call.   

It is strange how one can remember the smallest details of some things, and then the next moment  completely forget where you had put your keys…

 It was a Sunday afternoon. We were on our way to have a drive in the veld. I remember standing at the front door wanting to close it. When “ping!” I get a Facebook notification, another friend request from someone I don’t know. Usually I immediately block a person whom I don’t know, or has no mutal friends in common. But I quickly look at this at the profile picture, a man, and a very beautiful woman. I try to think back, but I don’t recall meeting any of these two people on the photo before.  My husband complains me being on my phone, interrupting our family outing. I put my phone away,with the friend request still hanging in the air. For some reason, this friend request bugged me. I had to find out more. I go through this person’s profile for 3 days. Strange. I never do something like this. At the end of the 3 days, I realise that this man and woman may have something that can help nickholis.  And then I get the notification:” you are now friends with Hannes Viljoen”. 

In desperate of help for Nickholis, I go so far by messaging this person and asking him if he is perhaps the miracle we are so long waiting for him. He replied by asking if he can phone me the next day. In my sense of disbelieve, I said yes. Not thinking much of it. Why would some big shot living in America offer me help, phone ME! I’m just a struggling housewife, living on the outskirts of the earth. So I left it there.

 I was busy cooking dinner the next day. WHEN MY PHONE RANG!  And just there and then our lifes changed! It was Hannes Viljoen, director of the Brain Child fund. He gave me so much hope. He said that our search for help is over.  He prayed the most beautiful prayer I ever heard over our lifes, and he gave us HOPE!!!!!!  He told me about the parent training conference that was going to be held in September and that that opportunity has the potential to change our lifes. I nearly collapsed when he told me the price of the conference. But I had hope. And not even a ton of money was going to extinguish that hope he gave us. Again I realised that our God works in MYSTERIOUS ways, and that EVERYTHING happens for a reason. NOTHING in life is a coincidence, not even a Facebook friend request. Our God truely works in mysterious ways…

It was a long and weary road to try to get the money. I was this close not going to the conference, not changing our lifes,not giving Nickholis a future. We almost gave up. But Hannes from the brain child fund taught us that it is too soon to give up. With seeing no way of getting that money,trying everything, he motivated us to keep on believing. One last, extreme desperate attempt to my uncle who lives overseas,changed it all. An email in the early hours of the morning changed our lifes forever.  My uncle was going to help us. 

Eugene Snyman. Big shoutout to you. Thank you a ZILLION times for giving Nickholis a future.

The Family Hope Centre is situated in Philadelphia. But us South-Africans has the amazing privilege of them visiting our country. 

They are  an international organization/team of doctors and therapists devoted to teaching and helping parents understand the neuro – developmental stages of their children and improve their children’s outcome. They are 6 doctors covering 10 fields of medicine. The Family Hope Centre spreads this help in 35 countries and  they have over 35 years of experience.

 On 29 September, on Nickholis’s 8 birthday,I went on the parent training conference. I saw a lot of symbolic meaning in the fact that I am starting a new journey to change his life right on his birthday. A new year for him, a beginning of a journey of healing for him! What a great gift to give a child on his birthday! : A future!  I was a bit sceptical. But I was pleasantly surprised! They thought me a great deal about my child, they taught me about the function of the brain, how it develops, and how it works . They taught  me about their evidence based program,that is proven to work. We are currently following their program. And in about a month’s time Nickholis already had shown progress. 

What an amazing opportunity I had going on this conference. It changed our lifes forever!  The darkness, thorns and rock formations was gone, we finally after 8 years of immense struggling found help for our son!

The best is. You go on this conference, and suddenly you have this amazing new support system. We were so alone for 8 years. Not knowing. Struggling. ALONE. Now our family is apart of a growing tribe who is following the Family Hope Centre program. We have access to help, advise and support when ever we need it. And the Family Hope Centre and the Brain Child Fund  just keeps on offering their support through weekly webinars and revision sessions of the course. Our lives truely changed.

It is not all caramel chocolates, not at all. It is actually a very difficult jump we took. Our lifes changed completely. Our lifestyle had to change dramatically for Nickholis’s sake.But I am a fighter, and fighters never give up. And, thankfully we have all the support we need a message or an email away. One day we will taste victory when our son is healed. I get so excited about life, when I think that we have hope now! We have a working plan for our child. We are forever thankfull for being able to be on the Family Hope Centre journey.

We are currently praying for a miracle. And we know that God will provide. The Family Hope Centre is coming to South-Africa in February 2018, to offer an intense evaluation and testing of Nickholis. This is the next big step in changing our son’s life. We are currently doing all we can to get these funds. But we know that God works in mysterious ways and that miracles do happen.

If you are reading this, and perhaps you have a special needs child, I urge you to go investigate the Family Hope Centre, and the Brain Child Fund. This will be one search on the internet that will change your lives forever.

www.familyhopecentre.com

www.brainchildfund.org

Learning about the “A” word.

 Suddenly our baby boy who basically never cries, is screaming the roof of. One doesn’t know if one should be happy that he is finally crying like a baby is supposed to. Or if one has to worry and fear something bad.  Brand new mother, I am panicking like crazy, Google tells me my son has 5 minutes to live, and I have NO experience of any of this. So of to our GP we went. When I think back, it is almost as if I knew something is severely wrong. I had this unexplainable sense of worry and fear going for our first ever visit to the doctor.   After Dr examined Nickholis, there was a moment of relief. Like a cool wind blowing on my fire of worries. But, then the words : “I just want to check his head circumference” came. And just there and then, by that words spoken by our GP, our whole world, our whole FUTURE changed FOREVER. I walked out the doctor’s rooms with a prescription for meds for his ear infection, AND a letter of referral to a pediatrician….

 What was supposed to be a quick trip over the mountain for our first visit to a pediatrician. Ended up in one of the longest days ever imaginable. The pediatrician looking concerned, asking lots of questions that I barely knew how to awnser. And then the verdict: OUR SON HAS TO BE TESTED FOR HYDRO CEPHALIC. 

It felt like my whole world came crashing down. It felt as if a whole building came down onto me, and the rubble,cement and bricks of a whole building was resting on my body. It felt like there was a 100 ton weight hanging on my heart. 

Our son, a few months old, had to go to hospital….

I am standing in a different room…. No parents allowed when they are injecting, taking blood, or putting drips in. 

WHY?????   It’s MY son! I want to comfort him in his moment of fear and pain!!!!

It’s quiet, my ears tuned in for the slightest noise my son might make. I hear nothing. I start to breathe, thinking that it might have not been painful.

And then, the loudest SCREAM I have ever heard, comes out of my little boy’s mouth. It felt like I could run through that wall, buldozing down the doctor and nurse hurting my child. I wanted to save my child from the pain, but the barrier they had put there, prevented me. NO PARENTS allowed!

I wonder WHY????? At age 34, I still want my mommy if someone comes to me with a needle.  I’m sure a baby would also like his mommy beside him when stabbed with needles.

Nickholis came out, drip in the arm.  His once emotionless face, now speaking of pain and discomfort. Full of medication to sedate him, I try to sing him a lullaby to help him sleep. But with a slight noise, sounding like a cry, I realise that my attempt to sing to him, is making his ear infection worse.

We enter the room where the CT scan is going to be done. Dressed in heavy armour to protect us from the radiation, I am looking at our son, STILL NOT ASLEEP and wondering where his protection is. His small body. All those radiation, all the discomfort…Us looking at him while they are proceeding with the scan. Wondering, worrying about the outcome of this scan. Thinking about what the pediatrician said that I must prepare myself to stay a few nights in hospital with him. Because if the CT scan tests positive for hydro cephalic, then its a long road of draining the fluid etc…

Hours of trauma for a CT scan that litterately took minutes. What an anti climax! With all that trouble to get to do the CT scan, one would have expected the CT scan to be like a space ship, whisking us away to go see the milky way or something.

But nope. No seeing other planets or stars. Just us walking out of the hospital, AL THREE OF US! No hydro cephalic found.

*Lady’s and gentleman, stand up and give this woman a round of applause!!!! She survived yet another day in HOSPITAL. *

 Little that we know that our happy, warm hearts of relieve, would soon be turned into agonizing heart aches,guilt trips, and lots of lots of pain.  And of course yes….me participating in my own series of FEAR FACTOR…

Life is like a box of chocolates,  you NEVER know what you are going to get next…

Life went on. Us basically living in deniel. The fact that there might be something wrong with our first born was just too unbearable.

He didn’t crawl,he didn’t cry, his milestones was way behind, he just wasn’t like all the other baby’s.

We got worried about the “WHAT IF QUESTION” hanging around in our heads. And we started a very long journey in search of awnsers.

We most probably visited every pediatrician, psychiatrist, every type of Dr, every type of therapist there is in the Garden route. When we exhausted that, we took the long road to Cape-Town. We searched far and wide. Only to get different types of diagnosis. We went from Nickholis having Speech Apraxia, to ADHD. To…. Our first AUTISM diagnosis.

After going to about 13 specialists, we heard about THE doctor for Nickholis. We packed up, and went to Cape-Town. We softened the situation by making this specialist trip, a mini holiday. It was a pleasant 450km trip. Kids got to see Table Mountain, I got to visit every padstal there is along Route 62, we were going to the best doctor there is, we were all in good spirit. But. Reality soon came knocking on our doors. I remember sitting in early morning Cape-Town traffic on the way to this highly recommended doctor. Suddenly that same feeling I get with every visit or every test, came to me. Our veichle wasn’t moving because of peak traffic. But it felt like could run those kilometres to the doctor. I just couldn’t wait to hear what our future was holding. 

Walking into the doctor’s room, full of hope and anticipation, to see a Dr that  supposedly was going to stop our looking for awnsers,       walking out of the room. BROKEN, SPEECHLESS… Our souls BLACK.

Our mini holiday turned into a long trip home, that felt like walking death isle.

Our son, our first born, our Nickholis is diagnosed with AUTISM.

With only a report explaining the diagnosis and yet another prescription for medicine, our lifes ended. 

One of the worst things for me is, they give you this diagnosis, and a paper that gets your child drugs at the pharmacy. And then that is that. My child has AUTISM. WHAT NOW????? WHERE TO FROM NOW??? HOW, WHAT, WHEN, WHY????

Back home. We just couldn’t accept that diagnosis. Not being wealthy at all, and probally having one of the worst medical aids there is in the country. Our journey concluded. And the Autism diagnosis was filed along with the other diagnosis and reports.  

  All that we got from the long journey of searching for awnsers was a lot of debt. Medical aid not paying, and the specialists rates sky high, one cant, or at least we couldn’t take this journey on paying cash immediately every time.

But we kept on. We had to find a awnsers, we had to find healing for our son. It lead us to no where. Except having our child hooked on two types of medication. We tried about 7 types of medicine. Nothing worked. Until we got two types that works. It works. 

I feel like punishing my child giving it to him. But if I don’t give it to him. All hell breaks loose. A wall in our house, full of holes in, speaks of a day I didn’t give Nickholis his medicine. Without the medicine he gets severe anger outbursts. And that day, the wall was the only one not hiding from him. 

Seeing your child get a total meltdown. Him literally not knowing what he is doing, him hurting anything in his way. NOW THAT KILLS A MOTHER INSIDE.

After his meltdown, he is always the friendly, loving son we know. Sometimes I wish I can swop bodies with Nickholis. I don’t know if he would be happy having a old, saggy, wrinkled body like mine, but at least he would not have all the struggles he has to deal with everyday. If a magic genie comes to me right now, I would exchange with Nickholis. It is so unfair. Such a fun lovig boy, having to deal with something he didn’t ask for or deserve.

I don’t aim to make this journey one full of marketing or ads. But. I believe in thanking people who made a difference to our lifes, who made this season of our lives easier. 

Yes, this trip I took you on now, was so far just a season. It was one of those dark chocolate and orange chocolates, no one likes. It was just a season.

For this season of our lifes there was two astonishing people, who made things easier, better, who supported and carried us.

Dr Emmy Verster, and Lesia Smith.

 I applaud you, and I have the utmost respect for you. THANK YOU. These two people supported us, stood by us, awnsered long emails and whatsapps when the questions was long, and the worries heavy. They showed us that their is amazingly good doctors and specialists in this country.  THANK YOU for making this disgusting tasting chocolate, taste a bit better. 

If anyone walks past Dr Verster or Lesia one day, please go and high five them, give them 5 million dollars, or maybe just a ticket for a long relaxing holiday.

 Because these two people. They turn orange into caramel….

The day I met my biggest challenge ever.

One of my biggest fears in life is a hospital. The SMELL, the atmosphere, everything about that place freaks me out. If I ever had to participate in episode of Fear Factor, then a day in a hospital theatre would be my downfall and my reason for losing that big cash prize. 

So the afternoon came that I started to feel pain that I’m not used to. Experience stuff that I shouldn’t. I knew Nick was knocking, wanting to come out into the world. But I was too scared, and hoped that it was just a case of Braxton hicks.  I casually tried to ignore the pain, by watching TV with my mom and husband that evening. Biting on my teeth, trying to hide the pain, I was not going to an hospital. My mom knowing me better than anyone on earth, often winked at me, hinting that I must announce that it is time.  My cool and calmness soon turned me into, sounding like the lead vocalist in a heavy metal band. My prim and proper biting on my teeth behaviour soon turned into me being like a furious monster from the planet zordon.

It was time…

But first, there was duties to be done.

Who wouldn’t listen to an angry monster uttering lyrics from a death metal tune? 

My poor mother. While they were struggling to get my out of the front door into the bakkie. I was forcing her to make lunch for my husband for the next day.  SCRAMBLED EGG sandwiches! My husband doesn’t even eat scrambled egg sandwiches! And then of course his perfectly fine work clothes had to be ironed. My poor mom. She obied everything her monster daughter ordered.

Then there was the 25km gravel road to town… It was the longest, most agonizing trip to town ever! My adrenaline was pumping, my sudden personality scared the day lights out of my mom and husband, I thought I was going to give birth right there on the farm road. As if that wasn’t enough action for one night, a deer came running infront of the bakkie. We missed it by split seconds! It was this close or the delivering doctor got some biltong …

I remember that clock on the top right side of the wall so well…I actually wish I can own that clock one day which gave me so much memories. Like a souvenir, reminding me of a night I survived in a hospital.

Exactly 10 minutes after entering the delivery room.  Nickholis Renier Kleinhans was born.

On 29 September, 00:15, I met my biggest challenge ever… 

And this dear people of the palace, this is how our autism journey started.

Leave your seat quickly, and go get some booze and tissues for the ride to follow.

Because as you know by now, ANYTHING can happen when you are raising an autistic farmer…..