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“You May Not Understand Him, but Trust Me, He Is Light”, Sahara Abdi Speaks on Her Journey Raising a Neurodiverse Child

Sahara Abdi

An introduction by Lesalon Kasaine

On the 2nd of April, every year, we observe World Autism Awareness day. Autism, also known as Autism Spectrum Disorder, is a neurodiverse condition that impacts the nervous system, causing problems with communication and behaviour. While it impacts every individual differently (and therefore the gamut of its symptoms is wide), the most common symptoms are inept social skills, poor receptive and expressive communication, and restrictive and repetitive behaviour.

Other neurodiverse conditions apart from Autism include Dyspraxia, Dyslexia, Dyscalculia, Dysgraphia, ADHD, and Tourette’s syndrome.

Sahara Abdi, a storyteller, and translator currently living in Nairobi mothers a neurodiverse child.

When Sahara’s baby boy came into the world, one of his eyes was smaller than the other. Sahara noticed that the smaller eye blinked a lot while the other one did not blink at all. Even though she agrees that this unusual occurrence caused her discomfort as a mother, she dismissed from her mind the idea that the child was sick.

In October 2021, Sahara went out on a dinner date with a friend. Worry crept into her when her friend asked, “Sahara, is your child okay?”

Naturally, the mother wanted to know what prompted such a question. It sent fear creeping into her heart, ruining her dinner.

The friend explained, “For starters, one eye is smaller than the other. Again, notice how the boy is unusually silent?”

“He also doesn’t look normal, physically,” the friend went on. “His head appears to be too small for his age.”

It was this unexpected conversation at dinner that plagued Sahara into the night. The next day, she took her child to a paediatrician.

The paediatrician agreed. Something was wrong with the boy. After scans and tests, it was determined that the boy’s brain had slow activity. Other notable symptoms in the boy included seizure attacks, pulling at his hair and smashing his head against the wall. The boy also twitched his mouth to one side whenever he cried. Add ‘milestone delays’ to these, and concern over his health started to grow. Is the boy Autistic?

It is hard to diagnose Autism in a child. Globally, telling whether a child is autistic or not is tough— not until the child is seven. This is because there are blurred lines between symptoms of Autism and normal tantrums that kids throw when in distress or when they are agitated. The doctors that Sahara and her child saw— all of them— couldn’t clearly ascertain whether the boy is on the spectrum or not. But they said they would, with time. The boy was put on epilepsy drugs because of the seizure attacks, and three different occupational therapists said that the boy’s tendency to pull at his hair and smash his head on walls could be attributed to agitation. Since he cannot communicate, it agitates him and in frustration, perhaps, he pulls at his hair and hits his head on the wall— his alternative way of communicating.

Sahara Abdi, a natural storyteller, author of three children’s books and numerous short stories, penned a personal essay where she pours out her heart, taking us into her world and what her journey raising a neurodiverse child has been like.

***

Your child is not okay

“Put him here”, the doctor said.

After what seemed like an eternity of observation, he rose from his seat, with his hands in his pockets, and the words that left his mouth then, I still hear, even when I turn at night in my sleep, months later.

“Madam, your child is not okay. Of course, I cannot tell what the exact problem is by just looking at him, but the right side of his brain does not seem to be okay. We will run an MRI (magnetic resonance imaging) test, and an EEG (electroencephalography) test on him tomorrow, to establish what the problem could be.

I broke down right before his eyes, sobbed like a child. And then the next minute, I was full of shame. How could I cry like that, in public, in the eyes of a stranger? I struggled to shut my overthinking brain, and whispered “calm down” to myself. This thing where I talk to myself goes back to my childhood when I could not differentiate the capital letter A from the small letter a. I picked up the habit to talk to myself, in the mirror. I admired addressing my different personalities, only that back then it wasn’t apparent I house many personalities, as is now.

When I’m not writing, I’m mothering. My name is Sahara Abdi, and this is my journey as a mother of a neurodiverse child. Please take a seat with me for a moment.

The twists and turns of life

Had anyone told me a year ago that on such a day I would be here writing this, in celebration of World Autism Day, or talking about neurodiversity, and that my whole life would take a turn and this, this would be the centre of it, I would have laughed in their face.

One time, someone who was meeting me for the first time in person, though they knew me on Facebook,  saw me rise to pray when the adhan for dhuhr was called. After my salaah, over lunch, he asked me what my belief in God looked like; he was ‘shocked’ to see me pray, considering all the untethered things I write online.

“How deep is your connection?” he wondered, in what sounded to me as admiration, married with “I didn’t imagine this of you.”

I get this a lot, unfortunately. So, it didn’t bother me. Given that we are of different faiths, it was unlikely for him to understand that what I am, the core of me, my open-mindedness (in his words) had nothing to do with my relationship with my Creator. Back to the point, my answer was that the human heart reaffirms my belief in God.

This thing that beats inside my chest

And this is it for me; the human heart. A little miracle inside of us, perhaps with a brain and life of its own, devoid of our plans. It is why I believe. When I’m sad or feeling hopeless, I reach out for it. I feel it beating, and that— that is the miracle that recharges me. It keeps me going in the midst of all storms— even when anyone would understand if I took the other path of desperation, faced the wall and said, “this is it, I’m done. I give up.”

You lose a loved one, or a loved one is diagnosed with a lifetime condition. Just when you think you’ll never heal, the human heart looks at you, as if saying “watch this space”. This is not to say, by any means, that grief is timely or that we just accept pain so easily without hurting. No. The thing is, the human heart is a beautiful strange thing on its own. How it heals, and how it is able to keep beating.

What I thought would be the end of me turned out to be my fuel to wake up and put my best foot forward every day, for my son, and for many children like him. I had initially thought that I would forever be helpless, watching my son in pain, feeling helpless that I cannot put a hand on his body and miraculously sap all his dis-ease and pain.

Some days it is very hard. You have all the questions, most of them why my son? but no apparent answer. You watch with love in your eyes, but fear in your heart. Your child has delayed milestones, with a brain that functions differently.  They are behind the ‘global standards milestones’, and it pains you, but you understand too that they are on a timeline of their own, and that all you need to do is offer them a little more help, support, push with their therapy, and give them loads and loads of hugs. You tell yourself that they are okay, enough, and you need to shut the noise and be still.

On other days it is calm. They have achieved a new milestone, and you are calling all the aunties, and people in your life to say, “he clapped, he finished his meal, he said mama, he locked eye contact” (Thank you aunty Moon (Munira Hussein), for being the constant factor in this story).

Neurodiverse kids have a purpose, just like the rest of us

It is a journey. There is no growing out of it overnight. You keep reminding yourself that they are complete even though they might not be okay based on society’s definition of okay. But they are enough, just the way they are. They have a purpose just like any of us, and many gifts such as patience and love to teach us. They view the world differently, in beautiful colours that we may not understand because we were taught black and white and maybe some grey in between. Here are children who say, “I’m the rainbow, beautiful in ways only I know and shine in”. They are enough. I love them.

There are days people would ask me, “Is your child okay? Is he normal? Why is his eye like this?”

And it would hurt me. But not anymore.

Now I have put on my boots of courage and confidence to stand up and say; my child is colourful. You may not understand him, but trust me, he is light. This did not come overnight. It was a journey. I mourned, cried, felt the pain and sat with it; and I learned to walk with it.

If you sit for long, you may never get up. The trick is to balance the overwhelming days and the good days. Both are good anyway, in their own ways. You learn to pause, you learn yourself the more, and eventually, you learn this unique journey. You become the torch that educates about the misconceptions and the myths. Again, this is not easy. Some days I wonder why it is my duty to educate a whole society that there is nothing wrong with a child such as my own, but I take it with grace and with love. For my son, and for all children like him.

Normal in a colourful way

Even after the diagnosis, you still get this battalion that goes like— your child looks normal; he is normal; he is not drooling; oh he can say mama; he is fine. Because most neurodiverse conditions are not physically noted as a disability— they are observable in behaviour. And you get lost in between, trying to explain that yes this child has been and is normal, but you know, he is normal in his own different way. He needs my help and support.

It is so confusing, and if you let the people who are not experiencing this with you dictate the way for you, you are going to hurt the most. I find the trick is for me to listen with empathy, and to answer with empathy. To educate. It is what I took on as my responsibility, even when it was hard to.

This decision inspired me to write My Brother With The Colourful Brain, a children’s book on neurodiversity. It is my little way of standing up for my child, and for every child like him. To honour their diversity. To educate the miseducation of who they are. I love their colourful brains.

This is for every mother walking this journey. In sharing my experience; my story, I hope that they can find hope and that together, we may walk this journey.

This is for every child who is living with neuro disability. I see you. I hear you. You are unique. You are love. You are complete. You are enough. I love you.

***

Autism Society of Kenya was established to work for a brighter future for every individual living with Autism Spectrum Disorder.

 

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