One mother’s experience raising a child with autism

What you need to know:

As the world commemorates World Autism Month, April, I would like to shine a light on autism by talking about my experience. My name is Ida Nakiganda and my son’s is Isaiah Mukisa Musoke. This is our story.

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.

His hair cut sessions were the most horrendous as he would scream like he was being slaughtered. I now understood that the combination of the motion of the hair clippers and his heightened senses meant that he felt like his scalp was being scraped off his head. He is also very selective about what he eats because of his heightened senses of smell and taste.

4 years to date
“Getting help, moving forward”

Seven year old Isaiah Musoke was diagonised with autism spectrum disorder. PHOTO BY IDA NAKIGANDA


When Isaiah made four years, one thing was for sure, I needed to enroll him into a special needs school, having now found out what the problem was. So in May 2013, I enrolled him into Dawn Children’s Centre in Bukoto, Kampala.

I had read about Dawn Children’s Centre in the newspapers and the services they offer for special needs children. At the school, they developed a customised speech and occupational therapy schedule for him. The beauty about Dawn Children’s Centre is that it is also an inclusive education centre where they combine both therapeutic interventions with main stream education.

Isaiah has been at Dawn Children’s Centre for three years now and I must say I have had no regrets enrolling him there as they believe in him and are able to explore his potential as a special needs child. At the time of enrolling him at the school, he was 4 years old and had not yet called me mummy. However one day, about two months after enrolling him at the school, I went to pick him up from school and he came running towards me and he blurted out the word “mummy”.

I could not believe what I had just heard and I burst out crying. Isaiah is now seven years old and over time, he has emerged out of his shell. He is vibrant, full of life and socialises with his peers at his school. He loves singing loudly and telling everybody “hi” and “bye”.
He says “good morning” to everybody at home in the morning and says his prayers every night.

I still cannot hold a full-fledged conversation with Isaiah and while talking to him I have to speak very slowly so that he can be able to pick key words and respond accordingly through action or speech which is usually a one-worded to three-worded sentence.

He counts up to 100, says all letters of the alphabet and can read some words. He loves being read to, and his latest craze these days is to parrot people’s conversations. He calls me “Mama”, “Mummy” or “Mama Isaiah” and I feel the greatest sense of pride.

The reason I share my story is because I hope that someone in a similar situation (and there are many) will look for help for their children. Autism is a developmental disorder that children in Uganda are suffering from silently. And this is because their parents have chosen not to acknowledge the disability or for most, they cannot afford the specialised interventions.

Many people do not understand the complexities of autism spectrum disorder and the various hurdles that children with autism and their families face.

Uganda’s education sector is yet to comprehensively address itself to inclusive education in schools which would cater for the unique requirements of special needs children.

This has meant that education for them is not easily accessible and affordable. As a parent of a child with autism, my biggest worry is that as Isaiah grows bigger he is going to have to transition from Dawn Children’s Centre to a school that offers inclusive education opportunities. However, my options within the mainstream education system in Uganda are limited or next to zero.

I know for sure that under Uganda’s Constitution and Children’s Act, my child is entitled to the same education opportunities as other children in Uganda.

Special needs children have been subjected to marginalization and have been shunned by their families and communities. When I run into people and they ask me what is wrong with my son, I tell them that there is nothing wrong with him and in fact he is just different as we all are.

We have to embrace our differences and we have to celebrate children with special needs in order to give them a chance at life in order for them to fully realise their potential as citizens of Uganda.

For parents and families out there, early identification, diagnosis and intervention can make a significant difference. The earlier we can recognise the signs of autism and get support for our loved ones on the spectrum, the better the outcomes they will experience throughout their lives. Acceptance is crucial for families as that is the only way they can seek interventions for their children.

Denial may be convenient for you as a parent but it is not in the best interests of the affected child.

THE LESSONS LEARNT ON THIS JOURNEY

Changing my expectations
My first step as a parent was to reorganise my expectations of Isaiah. I had to go through the first step of acceptance of my child and his disability. As a parent I have had to manage my expectations, employ a lot of patience and not compare Isaiah to other children. He is his own unique person created in God’s beautiful image. Even when I am frustrated for example when he descends into his epic melt downs, I have to keep telling myself not to show him that I am frustrated.

Getting as much support as possible
It is very important to have a strong support mechanism. I would not have been able to hold onto my sanity if it wasn’t for my family. Isaiah’s grandmother, uncles, aunties and nanny, Deborah have all had to rearrange their lives around my son’s challenges and have taken time to read about autism so that they can be able to relate with him. Isaiah is now groomed at home by his grandmother as she is the only one who knows how to calm him and trim his hair. Isaiah’s school also offers counselling and parents sessions which have been a great help in terms of providing me with information on how best to handle Isaiah’s condition.

Keeping my faith in God
God has not failed me thus far as He has been my pillar of strength and he has taken control of all my worries and fears concerning Isaiah. I pray to Him daily that I can be the best parent as He intended me to be.

Going with the flow
We take each day at a time with Isaiah and we have adjusted our schedules and lifestyles to make his life comfortable. We have gotten used to the repetitive behaviour (in words and actions) that is typical of people with autism. Where any other person would have been impatient with Isaiah, we answer him whenever he calls out to any of us, even when he has done it for the umpteenth time in five minutes.

Sticking to the routine
The most important thing is that we have studied him and now know what he likes and what sets him off. For example, if I am to take him to the playground, I make sure that it is at a time when the place is not crowded as crowds overwhelm him. We also try very hard to keep his schedule structured and predictable as he suffers setbacks when there are sudden changes in his environment.