My Hidden Child – #WinterABC2022 (Day 11)

Autism awareness by Annie

As a follow up to The Unseen Child, I am sharing a personal story that was mailed to me by Loveness, a mother raising an autistic child in Zambia. I share the story to fulfill Loveness’ wish to raise awareness on autism.

Those that wish to reach out and encourage her can email her on lovenessmakomelo@gmail.com. You might be a stranger but your words of support and strength might mean a lot. Let us get to her story…

My names are Loveness Makomelo and I am an advocate for autism. I learnt about Autism through my now 13-year-old autistic and non-verbal son. Please follow me as I delve into this much ostracized topic and peoples living among us.

My son was supposed to be born on the 1st July 200 , by the 26th July the closest I came to delivery was  3 minutes of contractions. My Doctor advised that a c-session be done. On the 27th of July, my son was born via C section at 4kgs which is really big for a new born baby. Initially everything indicted that my child was healthy and  the excessive weight was the only worry. He moved from 4kg to 7kg in a month to 20kg in six month. Apart from that, he was an ordinary functional baby.

Growing up in an extended family I had experience babysitting my nieces and nephews.  I knew most lullaby song you can think of. I tried to sing them to my son but with him it was different. He could not respond, regardless of whatever I tried. It got me worried. I showed concern but my mother’s false sense of comfort sadly made us not to take diagnosis earlier. I thought, mother knows best , “he will respond at his own time” She said. But to her credit she was growing older with six children and 13 grandchildren mine being the fourteenth.

Time went by and my son turned 6 years and still unable to walk.  We took him to Kitwe central hospital and the physician said his right foot had a weak nerve. They put a cast on it for 6 weeks. He used to cry as it was that uncomfortable. Six weeks later, and the initial leg cast was replaced by another and the crying became much worse. When my Mother went to church one day, Father and I removed it because we could not stand my son’s anguish. We decided to take him to a private hospital where they recommended physiotherapy and just six sessions he was able to walk. The issue now was speech and use of the ablution.

Being a young mother and having had a child out of wedlock had its own challenges. However, with a good paying job, I was determined to ensure that my son gets the best money can buy – play park trips, parties and expensive toys etc. To my frustration, whenever we went to a party or crowded place he simply refused to come out of the car and if forced, he would self-isolate completely. His favorite toy was a coca cola bottle he would spin it the whole day in the middle of the living room which was odd, given the variety I got for him.

My son was growing physically but his mental faculty progress was not in tandem, in fact it was annoyingly slow. The few words he had learnt to speak earlier on where now fading to baby blubber.  Eventually all the words disappeared, together with everything we had really worked hard to teach him. By then he was 4 years old about to turn 5, we got worried and started seeking help. We were told to go to the University Teaching Hospital (UTH) in Lusaka.  My community and society had labeled my son all sorts of names from abnormal to all the mean words imaginable.  My son was 5 (years old) for crying out loud! I withdrew him from school and I personally withdraw from socializing and kept my son home.

It was time to take action. At UTH we were given a period of up to three months appointments to assess him. There was one which was done in the theatre because the boy was to powerful they couldn’t hold him down. It took five different Doctors and Clinics to give a report. When the report was issued there was no mention of AUTISM. We were given information to use at home and at school on how we should help the boy. I got more frustrated because I needed a quick fix. A lasting solution and not a report of instruction. At that time I withdraw completely. I became a very sad person.

I started believing the bad things family and society had said about my son. I gave him the love he needed yet I was hurting inside.  I would hold him close to me and ask God to forgive me if I had sinned. I would cry in the night asking God to transfer the burden to me and let my son be a normal boy just like his friends. My parents were so supportive and they felt my pain. I started lying to people about his progress in school. And wouldn’t bring him anywhere near my friends. I stopped the kids at home from taking him anywhere. I become Mama Bear.

In 2013 before my birthday, I prayeg for Faith asking God to show me a sign; to reveal to me what was wrong with my son. I didn’t even want cake that year I just wanted answers. The morning of my birthday we were seated outside with my son. My father had guests one of them a white Doctor from overseas. I can’t remember what triggered my son but he run at the speed of light outside the gate. I chased after him. The Doctor stopped me and asked what was wrong with my son. My answer was that he is just naughty.

He asked me to leave him alone and requested for my attention. He asked the following questions;

“Does your son flap his hands?”

“Does he stare at one object for a long time?”

Does he cry when he hears loud music?”

“Does he line things up?” “How good is his eye contact?”

By the sixth question I was thinking this guy must be a magician forgetting I had prayed. The African in me started doubting the authentic in all this. The answers to all those questions sent me back into time and they were all yes. Then he told me, “your son is AUTISTIC.

That word was big, strange and a mouthful – AUTISTIC? I didn’t sleep that night I called all the health practitioners I know. Asking them what AUTISM was. I went to google and searched autism, I read about it the whole night. I knelt down and thanked God for showing me light because now I had an idea what I was dealing with.

It sunk in and I started remembering things we did wrong;

The time we used to take him to the barbershop and he would almost faint, that was torture.

The time I hit him with my belt for soiling the beddings just after I had done 3 months of what seemed to be a successful toilet training (don’t judge me it’s a rough ride). The time I took him to those women who cut tongue ties, to have them scrub his inner cheeks with whatever herbs those were. And he could just scream and drop one tear. After they finished he would just get up and leave.

The times we went to a Pentecostal church to have him prayed for and he would start fitting. His sensory was on pitch high. We could have killed my child. We thought it was the demons leaving him. Knowledge is power.

Withdrawing him from school because of critics and hiding him home was uncalled for.

If at all he became naughty, there was this one high pitched song I downloaded I would play it and he would be scared. Lord forgive me. Even as I write this I feel the pain I made my son go through – not knowing what was wrong.

By the time we got back to Lusaka’s UTH Centre of Excellence my son was already 7 and we were told they only deal with those below 7 for early intervention.

That was the beginning of my Awareness Program, I started looking at my son at a whole new angle. I accepted that he was different and can never be the normal boy I had prayed for. I researched about autism, shared content with family and we understood him.

He became my stepping stone and strength. I started seeing him from the bible verse John 9:3, ”Neither this man nor his parents sinned,…but this happened so that the works of God might be displayed in him”. I forgave myself for all the years I had blamed myself. I forgave each family member who judged me and my son. I forgave my community and society for poisoning my mind.

I embraced my new journey –  different road same destination. I now knew every child needs a champion and I had to be that champion. I got excited over my new journey because I knew I needed to make a difference out there.

I know there is a mother I can reach out to. They may not want to come out in the open but they will be comforted.

To every parent out there dealing with autism, you are not alone.

Your fellow parent,

Loveness

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