“Reality only occurs when it hits us. I was having dinner with a friend one evening when he turned to my 13-month-old son and asked if he was okay.
In the months prior to this meeting, I had been asked this question in many forms—why is your child’s right eye twitching or why is he not sitting down yet, or isn’t his head too small for his age?
I didn’t tell my companion about all this. Instead, I became defensive and went on to explain that he was alright.
Inside, I was bothered. Partly because of these questions but mainly because deep inside I knew that something was amiss.
There were classic red flags like delayed milestones but I would dismiss them and tell myself that my child would catch up.
I had a perfectly normal pregnancy, healthy, and was taking good care of myself. Although overwhelming, it was magical getting to hold my son for the first time at the end of 2020.
I would tell myself, ‘Beautiful child.’ There was so much to learn and unlearn as a mother to a baby boy. A human being that is all mine. I was nervous like every other mother. But I was also having a lot of fun.
A few days after the dinner conversation with my friend, I went to a pediatrician who after physically examining my son recommended that I go for an MRI and EEG test.
Things started to unfold differently after this visit. One morning, I was in the kitchen when his elder sister came to me running saying that something was happening to her brother. In my naivety, I wondered why he was “vibrating”. It was only after this happened again and we rushed him to the hospital that I learned that he was having convulsions. There’s this particular incident whereby I heard him make unusual noise at night, was all sweaty and I came to learn that this meant that he had a silent seizure.
After some back and forth in the testing, at 18 months, my son was diagnosed as a neurodiverse child.
The term “neurodiversity” was coined in the 1990s by Judy Singer, a sociologist who has autism. It refers to the fact that certain variations in the human brain lead to certain developmental disorders that are different from what is considered normal. Neurodivergence manifests in various ways including autism, dyslexia, ADHD, Down syndrome, and epilepsy among others.
According to multiple studies, five to 20 percent of the population is neurodiverse.
Reactions after Diagnosis
There was no way of making sense of the diagnosis. You reflect on your pregnancy, reprimand yourself for things that you should have done in some way or another, you ask questions. The constant questions being, why me? Why now? Did I do anything wrong? Am I being punished? While still shouldering this weight, I still had to respond to people’s questions and say no to their unsolicited advice to see spiritual or traditional healers.
With such a diagnosis, life resets and you’re no longer the same. There are so many changes in such little time, and before long, you find yourself as an advocate of a cause that was unbeknownst to you. Over time you realise that the denial, anger, or pain hurts both you— the parent—and your child and that it is better for your child that you adjust and do something about it.
I reasoned that in protecting my child, I would end up becoming a voice for many other children.
I must say this realisation is not as obvious as the sun rising after a dark night, it slowly creeps on you and might take months or even years for you to come to terms, which is something I now tell parents of neurodivergent children. That it is okay, not to feel okay.
There is no medal for acting all brave, or heroism of any kind. It breaks the strong and not so strong alike, and if anything I tend to think that it takes strength beyond being human to come to terms with the condition, accept and show up for your child.
I am a writer and passionate about storytelling for children. My six-year-old daughter has been asking me about the issues with her brother. This is because she notes the many hospital visits— which she mostly tags along, her “mommy what is wrong with my brother?” inspired me to write a book that will try to answer her question. It is a book I hope will enlighten many of us about neurodivergence and open the conversation around the condition, for the society to understand, and for parents of neurodivergent children to come out and speak up. I wanted for us, parents, to not feel ashamed, or guilty that something could be wrong with our children.
There is absolutely nothing wrong with these children. I hold the opinion that as a society we have only been taught to see life in black and white, and if anything else, only add some grey in between and nothing beyond that. Yes, neurodivergent children are different but they only need us to understand them, while for others a little of our help, patience, but mostly our love is all they need.
The most interesting thing is that a few years ago, I wouldn’t have imagined myself doing this, talking about special needs, or writing about it and being this patient and understanding. I have met many parents who as well share the same thoughts, that they would never have imagined themselves raising children with special needs. If I have learned anything from this, it is that no one is ever ready for this. I have become a better human by all standards since I have found myself on this path.
My book “My Brother with the Colourful Brain” which I started writing in March 2022 and released this month, is about creating awareness of neurodiversity issues, and I hope that it will create the necessary conversation we ought to have as a society. I am also taking up the advocacy on social media platforms such as Facebook and Twitter —@254sahara.”