My Journey As A Mother With A Special Needs Child
By: Here To Help
I am a veteran expat, I have lived and worked in the UK, Arctic Canada, the Czech Republic, the United Arab Emirates, Oman, Hong Kong and Sri Lanka. For the past five years, my home has been Jeddah, Saudi Arabia.
I have a BA Joint Honors in English Literature and Psychology from the University of Wales, Cardiff, UK, a Postgraduate Diploma in Journalism, from Sanford, UK, and a MA in Counselling Psychology from Yorkville, Canada. In my professional life, I wear a few hats and in my personal life am busy with two little boys. You can see more about me and my personal blog here.
As a baby, I would take my son to nursery groups and he would love to play, but he always balked at circle time, preferring to gesture along to Twinkle Twinkle from a quiet corner. As mothers I think we intuitively know early on when something is amiss, and it takes courage to honour that.
In his infancy, Aslan had many viruses, skin allergies and ear infections. The doctor said that his late talking was because of bilingualism. I was busy with work, a second pregnancy and then an infant, so his answer was convenient.
Getting on for three years, Aslan still wasn’t speaking. By this point I had downloaded tons of resources on my Kindle and would read as much as I could during the night as Aslan and his baby brother slept. A close friend, an ABA therapist, urged me to get him evaluated. I consulted with various professionals. During that summer we visited my parents in Canada, where I to him to speech therapists privately. Strangely, none of those asked for a hearing test.
Back in Jeddah, I gave up my job because I knew the road ahead was long and winding. Not wanting to go back to our usual doctor, I took Aslan to a cheap local clinic. For just 40 SAR I started to get answers. The ENT did some simple investigations to reveal that my son couldn’t hear! He had Otis media and goodness knows for how long he hadn’t been hearing properly.
Now I had a piece of paper with graphed evidence and a medical reason as to why Aslan wasn’t speaking. This helped enormously to get Baba on board.
For whatever reason, getting appointments at JISH and with psychiatrists and OTs and speech therapists was not as simple as making a phone call. It was all arduous and stressful and too often only by chance and bulldozing around that I made the right connections.
While I had given up my job, financially I needed to work (all these consultations add up fast!) and I had been advised that Aslan would benefit most from a good-quality kindergarten. The search was on. Again, as serendipity would have it, a small new school had opened up nearby. I’d actually sent my CV twice, which I’ve never done before, and was about to agree to another place when they called me in.
Initially my role was to be a supply teacher. For his assessment, Aslan didn’t want to go into the classroom at first. Then he spied the numbers and letters. He went in and lined up the alphabet correctly and ordered the numbers. This was something he’d been doing for a long time at home, but the teachers were impressed and accepted him.
Within a few months, Aslan began to talk. I’d found a speech therapist who came to our home, and on that first session he barely made a sound. Over the course of the academic year, Aslan went from being a boy with some serious behavioural and communication issues to someone who would sit and participate in circle time. Those issues have not disappeared but, boy, what tremendous progress.
Other than suspected childhood apraxia of speech, Aslan did not get a diagnosis. The majority of professionals we met with did not suggest ASD. I am not sure how a label helps us when it doesn’t lead to funding, although it might help me in selecting books for midnight reading!
By now you’ve possibly judged a lot. That’s fine, that’s what humans do. Here is some of what I’ve learned:
- Stay calm
Worrying and fretting will get you nowhere fast. Children are so quick to pick up on the emotional energy around them.
- Behavior is a form of communication
Your child is always talking, whether using words or not. Try to keep records and spot patterns.
How must it feel to be your child – Imagine feeling hungry but not being able to simply say, “Mum I’m hungry and would like a sandwich.” Imagine being surrounded by people who can use language but you can’t. Frustrating, eh?
- It is what it is
So your child is different. They all are unique, one way or another. Deal with it.
- No shame, no blame
This is no-one’s fault.
- Keep questioning
Don’t believe everything in professionals tell you, especially if they’ve only met your child for twenty minutes. Question your own stereotypes – are you more inclined to believe someone of a certain profession from a certain country?
- Educate yourself
Read, watch videos, reach out to professionals through universities, LinkedIn or personal websites.
- Work with your child
You are not working for your child. Work with your child and assume some responsibility. Outsiders can help but you are the one who is there, day in, day-out.
- Persuade your family
Okay so this might be a whole other article, but you need to rally support from somewhere.
- Enjoy the journey
Apply some principles of positive psychology. Find what your child can do and have fun doing that together. No matter what special need they have, time goes so fast and every moment is precious.