The Journey with Kitso continues

Dineo and Kitso

Dineo and Kitso

Diagnosed with Mild Autism – High functioning on 27 May 2014

No one ever said to me that parenting would be easy; then again no one said to me it would be this challenging. Any child comes with his/her own gifts, being a parent you need to nurture these gifts and make them work for your child’s benefit and of course, his/her future.

Kitso is now four years old. Every day I experience a little something different about him, a little improvement that makes me so happy. I wonder if other parents spend so much time studying their kids. He has become my obsession, my daily study manual.

He is one of the happiest little boys I have ever seen. At first glance, even second or fifth you could never tell there is something “different” about him. Only after a few minutes will you start to notice how he almost never sits down, how he would pace back and forth like a hyper-active child, how he would make loud screechy noises when somehow feeling irritated, how he would bite his knuckles as though soothing some discomfort he can’t express, how he would be carrying around sticks and pens and not putting them down even to eat or bath, and how after a while, he hasn’t spoken in simple 3 or 4 word sentences.

“He looks so normal” my friend Phumi once said to me when I told her I was having him assessed by Autism South Africa. She is one of the people who believed I was just being neurotic. “You should just leave him be, at least until he is 4 years old” said my sister Tumi. She believed I was too anxious to have baby-and-son chats with my Tsotso, as I had always envied her relationship with her now 9 year old son.

It’s true, I was anxious, I was watching his every milestone from when he started teething around 5 months, he sat at 6 months, crawled at 7 months and by 11 months he was walking. His weight was always under control, he never got sick, even a flu. I waited and waited for him to start talking. He would use one word here and there when around 18 months, but no real conversation was showing.

This not-talking was my first red flag, I went searching for reasons. The internet was my guide, website after website I read to understand why a child his age was not talking yet.

I bought videos for him to watch and sing along with. From around 14 months, we had 2 television sets in the living room, one positioned on top of the counter for his eye height, the other on the wall. The one on the counter dedicated to Barney, Noddy, Music videos and other cartoons.

He didn’t attend nursery school then, stayed home with his full time nanny during the day. This dear lady has been my life saver because with Kitso’s always heightened energy, I would be a wreck. At least with her always around, I can take a break knowing he is cared for by someone who understands his energy and tantrums and mannerisms and all things Kitso, as much as I do.

He would memorize almost each and every word from these videos, by 2 years he knew his entire 6 DVD’s off by heart and narrated them along as they played. He copied even the body movements made by these cartoons. He memorized and sang along to music videos and to television adverts. I had hoped that maybe I was wrong; maybe what I had read about Autism was not what was affecting my son.

I taught him to count from one to ten, and he could! Even on his own. I got an alphabet poster and we used to point and sing the alphabet song until he managed them himself, until today he can still sing his alphabets.

Yet with all these activities that amazed me, he was still not generating his own speech. If he wanted help or food or juice or an apple, he would take myself or aunty by the hand and march us to an area where he knew they were kept, and just point. We would go into a process of elimination, with screams of anger with every wrong try. Of course he would be overjoyed when we get his need right. My neighbour, who is a grade 1 teacher, experienced this process one day and said to us that we should refuse to give him his needs, force him to say the word first, “juice’ or “apple” etc. We tried that but all the reaction we got was tantrums and being bitten. He would bite us anywhere he could grab, a hand, your butt, thigh, just to relieve his frustration.

July 2013,2 years and 5 months, I thought, maybe it’s time he joined a nursery school. Everyone had been preaching to me that he needed more interaction with kids his age,”…maybe he would learn to speak…” they all said; so I enrolled him at a local crèche. Maybe he really would eventually start talking, maybe his tantrums would die down, and maybe he would play better and stop hitting other kids?

The first crèche didn’t work out; I removed him within two months. He was just getting sick all the time. I wanted to keep him home again, but my friends who are also mothers, advised me not to and just let him go to another crèche, as any child goes through this phase with their bodies building immunity.

The second crèche was bliss! He was incredibly happy with his little friends; he learned to sing the school’s nursery rhymes. He learned so many other things like to hold a crayon properly, to sit when told, to touch certain body parts (his head, shoulders, mouth, nose). He learned to separate well with me in the mornings; he seemed to be progressing so well, until his first report card came in December. It crushed me to read that report card, the only area of good development was physical activities like jumping, kicking the ball and so on.

The teachers had kept so much from me, in an attempt to try and understand him themselves. It revealed he was not playing well with other kids, playing more on his own. Not sharing, biting and hitting. Showing signs of a “slow” child, not co-operating in terms of listening to stories or pointing at right objects taught, etc.

Second red-flag: Is my son a “slow learner”? My research started all over again. I came across an article of 3 year old boy who could not talk and was assessed for Autism and other developmental delays. I clicked the link for “Understanding Autism” below that article and voila! All the signs that a parent should look for in an autistic child, Kitso had over half of those listed.

Days that followed I was reading more and more about the subject, why it is called ASD (Autism Spectrum Disorder)? Where would Kitso fall in the spectrum? What is meant by verbal or non-verbal autistic child? High-functioning? Aspergers? Einstein syndrome? All these words where coming up, leading to more information to read and understand and I watched videos or various types of kids on the spectrum but I still wanted a professional to say YES/NO it is or it isn’t…

My search continued for someone who could give me that diagnosis. At that point I had already accepted, I knew his symptoms, I knew I had to be strong to handle the “Yes” that was already playing in my mind. I was already looking at future nursery schools, primary schools, what kind of a future can he have?

Being a single mother going through this stage is the worst, some days I would read a depressing article, with no one to share my struggles with; I would break down in the evenings when watching him performing his tantrums. I would have so many questions, and couldn’t wait to get back to work to steal a few internet time to research some more.

In February 2014, while going through the websites I landed in the A;SA (Autism South Africa) website. It explained Autism in a concise and unambiguous manner. Going through the tabs, I found the hope I was searching for, a professional to give me the YES/NO that I so needed to move ahead with my prince Tsotso. At no cost, just a R350 donation, are you kidding?

I downloaded the forms; I had them completed by Tsotso’s paediatrician, another form by his crèche and another very long one by myself. I made sure I tell everything there was to tell about this boy. It was detailed to the core. I wanted to make sure the answer I got after the diagnosis was final as I could not bear going through another process like that; I just wanted to pass the stage and find a solution. Somehow at the back of my mind I had already concluded but I had to find a way to dismiss any further hope I had that he is “normal” and just focus on the realities of our lives.

The day came on 27 May 2014, Kitso, his aunty and myself walked into the A;SA offices at 7.45 am. Being the loud and busy body he is, he was running up and down that passage as if he had been there before. Binwell, the administrator welcomed us and explained how the day would go. We waited on the couches in the hall as the therapists were preparing the room.

Claire came out to greet us and was intrigued by Kitso, as, to her surprise he was greeting her with a “hi-5” and looking her in the eyes, which is not common for autistic kids. We were called in, where inside the room Doctor Heather Thompson (Neurodevelopmental paediatrician), Mrs Sumaya Babamia (Speech and language therapist), Ms Jackie Paterson (Occupational therapist) and Ms Tavonga Manyanga (Teacher for Autistic kids at Joburg School for Autistic kids); waited. The 3 engaged in activities with Kitso while Dr Thompson was asking me various questions about him from my first suspicions up until filling out the forms.

He co-operated, he was in a good mood, not crying, showing his true self. After about an hour, they excused us from the room while deliberating over their findings. I came back into the room alone, to get the verdict while Kitso was playing in the passage. Dr Thompson’s first words were “He can be quiet a confusing little boy, just judging from his initial behaviour, greeting like normal, good eye contact and being so free, diagnosing him was not easy…Claire said the same thing about him after her meet…”

Kitso scored 36 on the Child Autism Rating Scale, meaning he has mild-moderate Autism, from further diagnosis though the interaction by the 3 specialists; he is clearly High-function with a great ability to learn. His therapy needs as well as his full diagnosis was emailed to me for us to move onto phase two of our journey. Taking strengths in his auditory memory and eagerness to learn.

It was both a relief, yet very sad to swallow the confirmation. Driving back home all I could think about was what to do next, clearly his route in life will not be “normal”. New school, speech therapy, occupational therapy…music lessons, intense play, anything the doctor said and others I have read to help my boy as best as I can.

After the confirmation, the following day, my friend Phumi came to visit and she was the first of my friends I told. She felt my distress, just staring at Tsotso not really knowing what to say. She herself has a 3 year old daughter who is already developed especially communication related.

I informed my loving and supportive sisters and then my mother who is 74 years old. I didn’t know how to explain to her what Autism is in Setswana, so I basically said Kitso will never speak as any other normal child. The old woman dismissed what I said and just suggested I take Kitso to Limpopo to his grandfather’s place for an ancestral ritual and all will be fine by him. In the quest for answers I had considered that but opted against it as I believed it would just delay the inevitable and give me false hope and introduce an element in Kitso’s life that was never there before.

Even to this day I cannot call Kitso’s Autism a disability. When I tell people, I would always call it a disorder or a condition or a state of mind. He is so smart; we are in awe sometimes of the things that he does. His enormous memory and attention to detail is incredible. He notices the things we would normally miss and he likes to perform to his music, followed by loud cheers from himself and us.

He now attends at Sunshine Early Intervention Centre in Elsburg, with a very patient and loving teacher Beauty. He is potty trained now for number 1. And what I thank God for more than anything, is that he is talkative as crazy now. He has grasped a number of words and phrases that he uses spontaneously without us coaxing him. He attends Speech therapy once a month as money can afford.

I come to understand more what Autism is and how I can help my son learn in a non-conventional way. His delayed echolalia is something amazing, in that he can memorize a phrase and the situation and content it was used in, days later when he repeats the phrase you would think he is generating language on his own, if you didn’t know him. Sometimes, out of the blue, he would say something I had said to him days ago, exactly as I had said it, to my surprise.

He now recognises and calls his classmates by name, even calls me by my first name sometimes, which is cute. He loves dancing and singing so much, even more he loves the cheers we give him while performing, if he notices we are not watching he would tap us on the shoulder and say:” Look, look!”.

With him being so sensitive to loud sounds and large groups of people and too much colour and excitement, we barely ever spend over 30 minutes at the mall or party or any function. Excitement in public makes him hysterical, resulting in screaming and tantrums; with on-lookers thinking he is just a spoilt brat, who needs discipline; whereas he is really having difficulty processing all this exciting things before him.

We live a bit of an excluded life, as I worry that if he turns too violent in a group of kids, he might just hurt them with parents not even trying to understand that he is “different”. It is okay; I believe God gave me Kitso for a reason, knowing my strengths as a person. I wonder how another mother would have handled him and I don’t see it.

He was made for me, HE IS MY GIFT!
Every day is a journey… Every day brings a little surprise…
Kitso’s journey continues!

Written by:
Veronica Dineo Mosiane

dineovm@gmail.com

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