By Ida Nakiganda.
After a very difficult pregnancy, on January 1, 2009, I gave birth to my angel, Isaiah Mukisa Musoke. When he was removed from my womb, he let out the loudest cry and the doctors brought him to me so that I could see him.
I looked into his scrunched up face and just knew that he was going to forever be the love of my life. I was a first-time mother so I fidgeted and gambled during those first months of motherhood. My son hit all of his milestones including sitting, crawling, standing and walking during the time he was expected to. Everything seemed normal.
The only milestone he did not achieve in record time was talking. However at one year old, it was not a point of concern for me.
But by the time he was two-and-a half years old, my son could not say logical words or construct short sentences. He would just say things that we could not make sense of.
Isaiah could not even say “mum”, “mama” or “mummy”. So unlike other mothers I had not experienced the joy that comes with hearing my child call me “mummy”.
At around that time I had to go away for further studies and I left him in the care of my mother. During the time I was away, the thought that there could be something wrong with my baby kept nagging me, so much so that I asked my mum to take Isaiah to one of the leading paediatricians in Kampala.
But the doctor told my mother that there was no need to worry as Isaiah would eventually talk. He further assured her that boys usually take longer to achieve their milestones than girls do. Even then, I still thought I needed to find out why Isaiah was not yet talking. So I decided to find out more about delayed speech and its causes.
One day, I typed the words “delayed speech in children” in the Google search engine. The very first result I got, said that delayed speech in children is associated with the Autism Spectrum of Disorders. I got a chill all over my body and immediately shut down my laptop refusing to even imagine that my baby had autism.
3 years to 4 years
“Finding out the news”
Isaiah was three and a half years old when I came back from completing my Master’s degree, and my first observation was that even at that age, he could still not talk or sustain eye contact.
He also did not like physical contact like hugging or holding hands. He was at the Ark Pre-school in Nakasero and I noted that during the school’s sports day or concerts, he did not want to get involved in group activities with other children and instead preferred to do things on his own in a corner somewhere.
In 2013, during the course of the first term of school, the head teacher of Isaiah’s school called me for a meeting.
She informed me that they had noted some concerning patterns about Isaiah’s behaviour. She stated that Isaiah did not want to socialise or play with his peers and that he could not sit in his class for long periods of time. They were also finding it difficult to communicate with him. She noted that he may need specialised attention and advised that I should take him for assessment.
I am very thankful that Miriam, the head teacher caused this meeting to happen because it forced me to face my fears and stop living in denial.
So in April 2013, I took Isaiah to both Mulago Hospital and Tunaweza Children’s Centre in Ntinda to be assessed. He was subjected to an assessment by both dieticians and special needs therapists.
My baby was eventually diagnosed with the autism spectrum disorder. In his case the spectrum manifested in the form of delayed speech, lack of social skills, a short attention span and the heightened senses of sight, smell, taste, hearing and touch.
At Tunaweza, I was counselled and assured that this should not be looked at as a death diagnosis. I was further assured that Isaiah’s disorder could be mitigated through continuous speech and occupational therapy.
I was also told that Isaiah’s condition was a lifelong disorder and that we now had to embark on a journey to equip him with life skills. I was told to change his diet which included toning down on the dairy products and cutting out sugar so as to manage his high activity levels. At some point, as the doctor was telling me all these facts about autism, my mind wandered off.
Firstly I wondered whether I would be able to wrap my head around the reality that I had a special needs child. I immediately began to worry about my son’s quality of life and whether I was in the position to give him the life that he deserved and to protect him from prejudices. When we were done, I went back home, entered my bed and wept the whole night. I couldn’t bring myself to get out of bed the following day so I stayed home. I actually did not work that whole week as I wondered what my next step would be.
Isaiah’s diagnosis explained a lot of things. He did not make eye contact, hated public play grounds or crowded places, usually had tantrums or melt downs, and constantly blinked in situations where there were bright or flickering lights.
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