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My Parenting Journey with A Beautiful Child Who Is Living with Autism

My Parenting Journey with A Beautiful Child Who Is Living with Autism
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I was young, newlywed and pregnant when I think about it now. Not the easiest of pregnancies at all, but not the worst at the very same time. I was 25 years old with a lot of life expectations and not a fear in the world. I gave birth to a beautiful and healthy baby boy.  To us his parents he was close to perfect. The first year was a breeze. For someone so young I coped with a full-time job, a husband, a household…any and everything life threw at me, I handled it all with aplomb.

Definition of Autism

Nothing prepares one for the news that there could be something wrong with one’s seemingly healthy and perfect child. That day is still a blur to me, yet there are so many things leading to that, which I remember vividly. My son Alizwa, was fine until at around 2 years of age when I fell pregnant and gave birth to my second child. We noticed a few things that were not making sense with him. Suddenly he was quieter, he talked less and then he eventually hardly said anything.

We took him to a medical doctor who said maybe he is stressed out because of the new baby, and that is his way of acting out. We thought we would give him some time to get used to the new family addition, but nope, he only got worse. I was ‘losing my son’ with each passing day. It was like he was falling into this deep hole of depression at such a tender age. Eventually, we were referred to a child psychologist who after evaluating him, also concluded that he was just a stressed-out baby boy.

My child only got worse, he was almost mute and the behaviour got worse and we consulted more medical doctors, medical specialists, specialist psychiatrist and so on, but no one had a conclusive diagnosis. Eventually, after a lot of running around, someone came up with a new word ADHD. I googled and read up on that, and one other word kept cropping up…AUTISM….but when I went to consult psychologists, they would say no he was too young for such a diagnosis.

Autistic: Unique, Special and Perfect

Then much later when he was around 4 years of age, he was given that formal diagnosis of AUTISM….a relief in some way, but very, very hard years to come. It shattered our dreams as his parents, and that came with a lot of denials as well.  We were asking ourselves questions we could not answer. Everyone reacts differently to such devastating news that one’s child will not be regarded as being normal (at least in society’s eyes).  It is worse when there is nothing physically visible to fit the stereotype of people with a disability. I questioned myself a lot.  I asked myself what happened, what went wrong and when. I blamed everything, especially the MMR (Measles, Mumps and Rubella) child vaccination (by the way, I still do), however, I needed a solution to the challenge before me.

Proud Mom and Son

Being a mother my next thought was “what’s next, what must I do to help him now”. I was literally in that mode for almost 4 years non-stop. I tried almost everything and anything under the sun. I bought medication overseas, went to every AUTISM conference, consulted with everyone who said they could help. I tried the natural remedy route, I mean, everything under the sun. The money we spent as a family to find out, to treat and to support Alizwa’s health condition is unbelievable. Luckily for me, I got retrenched at work, so I then dedicated all my time and money trying to get my son back to normality. I was lucky and blessed that my husband could afford me the opportunity to stay home and look after my children, and for me to try to get the best out of my autistic child.

The ages between 3-8 years were the worst. It was both devastating and heart-breaking, the most stressful years of my life. There were more bad days than good days, anything and everything could set him off. From eating the wrong food to a little change in his routine; that to an autistic child is a big deal. There were days where he would cry the whole day and that is no exaggeration at all. I mean ‘die hele dag’ with a 5-minute break here, and there. We went through a lot of emotional tantrums, coupled with some physical violence like hitting others; we had to teach him that all that behaviour was not acceptable.

Thank God, those days are over now.  My theory was that if you don’t break that sort of behaviour in the earlier years, imagine in 10 years’ time sitting with a 15-year-old who throws tantrums and hits people. Such behaviours are hard to break, however, they need to be ‘nipped in the bud’ early on, with a lot of consistency.

Alizwa underwent several therapies for as long as I can remember, ABA (Applied Behaviour Therapy) speech, occupational therapy, play therapy, AIT (Auditory Integration Training), (CT) Chelation Therapy, (MS) Music Therapy, (HM) Hyperbaric Machine, (TBT) Therapeutic Brushing Techniques, (ESB) Epsom Salt Baths, you name it, he has done in all. Some of these therapies worked, whilst others did not work.  In a situation where there is no definite therapy, you must try it all, and most importantly whatever therapy there is try it, it must not end in the therapist’s office; you must always follow through at home so you can observe quick improvement.

Alizwa has been on a very strict diet since he was 4 years old. I am more lenient now because he at least tolerates more food types now, than before. After testing him for allergies and other food intolerances, we realised that food is an issue with him; because some types of food would drive him crazy, literally. Now that he is a little older he knows what he is not allowed to eat, and he knows what makes him feel ‘yucky’ and what makes him feel good.

When he was younger we would hide some food stuffs. It felt like almost like he was stealing it, it was like an addiction for him to do so. If got hold of a piece of bread he would want more and more of it, even if he was full.  I could always tell by his behaviour if he had something that he was not supposed to have. After a lot of trial and error, as a family, we learned what foods he could tolerate, and what foods would set him off.  That together with an addiction to a lot of supplements, we eventually found our rhythm and stuck to it. He now knows all his medications, when he is supposed to take them, what to eat, and what not eat. Being a child, he gets naughty from time to time, and he would cheat sometimes, or we would give him a treat as a reward for good behaviour.

As families and society in general, we must never underestimate the ability of the kids who are living with Autism, to learn and comprehend whatever we teach them. Their inherent addictive personality and obsessiveness can sometimes be an advantage because with Alizwa we discovered that he is the cleanest and tidiest child in our household. His room is the cleanest, everything is in order, and if you tell him once to take his medications at a certain time, you are sure that it will be done every day at that specified time. His obsessiveness can sometimes get out of control, and we had to put him on medication for that, and that has made him a lot more calmer and less anxious.

One of the worst challenges of raising an autistic child is the issue of schooling. South Africa still lacks in good specialised schools for kids who are living with Autism. Alizwa is a very sociable child, he likes to relate with people, he likes making friends and socializing with everyone. Most textbook type autistic kids are non-verbal or have a very limited vocabulary, however, he is on the other side of the spectrum. He is verbal, very verbal I must say, albeit with very limited vocabulary. He literally will not stop talking once he starts. The special needs schools do not provide adequately for all his needs because he hardly has anyone to speak to at school and because the majority hardly talk as they are the typical autistic children.

There is a need for more inclusive schools in South Africa to cater for the kids like him who are not the typical Autistic cases.  We tried that, however, they could not handle him or should I rather say they did not want to educate themselves on how to handle such a different needs child. The education system needs to change because we discovered that kids learn more from one other than from anyone else. These kids learn differently, Alizwa is a visual learner. He has a great photographic memory, and if he sees it he will remember it.

Daddy and Son

If it wasn’t for my daughter who is 2 years younger than Alizwa, he would not have been where he is today, development wise. My daughter and her best friend truly helped him with his speech and his socializing skills. We were fortunate that we were not the type of parents who were too shy to take him out. My husband would go anywhere with him, he would throw his tantrums and be on his worst behaviour, however, we would do it again and again, because repetition is key with these Autistic kids. Ignorant people would look at us and this “naughty” child and question our parenting skills.  We endured those judgmental looks all our lives, however, we kept going.

We never lost hope or faith that things would get better with time. We had to learn to repeat ourselves until we were blue in our faces.  We would say,  “Alizwa this is not how we behave, Alizwa sit still, Alizwa no running around indoors, speak with your inside voice” repeatedly. We took him to a restaurant multiple times before he got it that he is supposed to sit still and behave reasonably. The same with going to the movies and all other kiddies’ outings, but today that is just a story, a distant memory. All that hard work and repetition over many years has finally paid off, and now we can go and do almost anything with him. We discovered that CONSISTENCY is the key.

An Autistic Child is also Perfect, Support is Everything

He is now a 16-year-old boy who has friends,  a best friend,  sleepovers without us worrying to death about him. With this kind of child, you need all the support from family and friends. I am lucky to have good friends who take him everywhere, he goes to out of town concerts with my friends, and their sons. They know him, they are aware of his condition, they are used to it because we have educated them about it and we have put a lot of work to be where we are with him today. We have wonderful neighbours who also help us with him, accommodate him and his autistic challenges.

Our Son Hanging out with friends

It really takes a village and I have that in my family and friends; a true blessing. As parents of a special needs child, you should be open about your situation to those close to you so that they can help and support you. This has been one of our biggest challenges in this household, but on the upside, it did bring us closer as a family, and such situations can either make you or break you.

My husband has been my rock through all this journey to date. I realised that as a woman, you always have a lot of options on how to react to challenging situations. Men do not have that luxury, and as women, we must be conscious and sensitive to that. We have both raised, and are still raising a beautiful child who is not autistic in our eyes, but the most thoughtful human being we have ever met. He is so kind and loving, a selfless young man. We are still battling teaching him that just because you have met someone, that doesn’t necessarily mean you know him. That is a concept that he still battles with and in the dangerous world we live in, I worry a lot for him about that.

He still has his autistic tendencies, very obsessive, which can be irritating when you have to repeat the same thing over and over.  He likes things done the same way but over time he has improved a lot in this regard. He is a very bright child with a great memory and a love for numbers. He knows everyone’s birthday, and if you ask him now what he was doing on this day 2 years ago, he will tell you specifically in detail. He loves church and goes every Sunday and prays everywhere and anytime.

Raising him has not all been ‘tears and gloom’, but it is a lot of parenting work. I have shed a gazillion tears, but I would not exchange it for anything, the challenge and experience have helped me grow and look at life from a different perspective. I fought for my child his whole life, fighting for him to have a decent life. I fought for him to be able to do all things that seem basic to others. My wish for him is to be independent one day, to be able to read and understand basic words like “exit” and “danger”.

I pray he would get to a point of knowing and understanding what he wants, and how to get it. I have forgiven myself for ever wanting what the world considered as a ‘perfect child’, but I got what was perfect in my eyes, in God’s eyes; the only child I prayed for. God never gives you what you can’t handle, and He entrusted him with us, who am I to question God. This child was brought here to earth to teach us something, and I hope to God I don’t miss that lesson. He has been such a blessing to our family, and whatever challenges we have faced in our journey during the past 16 years, I have learned to always respond with love.

                                                                             April is Autism Awareness Month

Comments (14)

  • Thank you Dr Nyati for a great blog. I’m now hooked. Please link your new ones to FB so we don’t miss them

    Reply
  • I have renewed hope after reading this post. You have just described a younger version of my beautiful boy. We are new on this journey and we know it will not be easy but we are sure to conquer. Thanks for sharing Dr Nyati. Much respect to you and your family.

    Reply
    • Thank you very much Hazel. I hope that this platform will assist parents in understanding that they are not alone and facilitate sharing of knowledge and experiences. I also wish that people would use this to create a support network for parents of Autistic children.

      Reply
  • Woow…Linda, I am too proud of you. You have written from the heart and have dug so deep within you. Honestly, we think we have challenges until we hear what other people have been or are going through and we ask ourselves whether we would be able to deal with what others are dealing with. Really, every cross for whom is able to bear it. I have the privilege of knowing Alizwa personally. What a pleasure being he is. Thank you Doc for this blog. Upwards and onwards. I hope it touches many lives to make this world better.

    Reply
  • Thank you so much for the encouraging and educational article. I am a mother of a five year old autistic boy. I am on this journey and reading your story has made me cry not because of how difficult this journey is, but because between what is said and not said I got a sense of how much you love your son and your family. I would love to have your contacts so that I could perhaps speak to you about some of the therapies you found to have helped.

    Reply
  • Thank you Dr Nyathi and Linda for the article, I know the couple personally, they have done wonders in assisting us with our 2 autistic children.

    Reply
  • This sounds pretty much like our story. What I can add to complete mine is that my 19 year old autistic boy is now independent, got his drivers licence and matric at age 18 years. He now stays alone and has a part time job while waiting to go to Canada for his further education. He manages his own life and budget. God is good.

    Yakhe Kwinana

    Reply
    • He is a Great God indeed Yakhe. Thank you for being part of the sharing platform. Please feel free to reach out and share your experiences with the other parents of Autistic children.

      Reply
  • Thank you so much Dr Nyati, I am a parent with a 5 year old Autistic boy….I wish I could get contacts of Alizwa’s parents maybe they can share more. thanks Doc

    Reply

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