Part 2 : Getting Answers

This is a follow up post to the one titled “Reminders on My Phone.”

So there we were, a paediatrician finally believed that my little one needed help. She told me to give it 4-6 weeks and if nothing improved dramatically, to return and get referrals for occupational therapy, physiotherapy and speech therapy, as well as for a neurologist.

I knew there’s be no miraculous ‘healing.’ I also knew that I didn’t want to spend money just to go get referrals when there are therapists who don’t require them. So I didn’t go back. And nothing improved.

At this point, my boy was trying to sit and crawl. He was probably around 12 months old or so. When he sat, we put those feeding pillows around him so that when he fell, he would not get hurt. He didn’t have that reflex that makes you holds your hands out so you don’t fall flat on your face. He also manifested the same muscle issues as when he was learning to feed himself, it was hard to watch him crawl. It was as if his whole body was a boulder supported by weak arms. His arms would buckle under him and he’d go smashing down into his face on the hard tile floor.

The number of times he and I both ended up with bloodied clothes…

An ex friend bought me a book giving tips for early intervention at home. It really helped! By the time we got to occupational therapy, I was doing everything I needed to be doing. So much so I ended up quitting OT.

Physiotherapy… She thought he had cerebral palsy because of how hard his body was working to hold him upright. Her showing me his muscles straining. It was all so painful.

Everything was painful. He was miserable.

Didn’t like being touched. Didn’t like our company, preferring to go elsewhere. It was as of we were too ‘much’ for him. He cried a lot. Screamed a lot. He only stopped last year when prescribed Risperdal.

It has been years. I’ve ended up with a child who is autistic, has developmental delays, ADHD, very possible FASD, auditory processing disorder, low muscle tone, Sensory Processing Disorder, speech delays… Oh the ears!

Let’s go back to the ears. On one of our visits with the paediatric neurologist, she looked at his face while writing her report and suddenly noted the unusual abs low placement and angle of his ears.

Ha! I knew it wasn’t the norm!

She wondered if he didn’t also have a genetic disorder of some sort. But she didn’t want to bother us by ordering any testing as it was apparently an expensive process and she knew intervention wouldn’t be different based on another diagnosis. He still needed Occupational Therapy, Speech Therapy, Physiotherapy either way. The symptoms wouldn’t change.

It’s been some years since we climbed onto this rollercoaster. It’s lonely because nobody I know lives anything even close to it. They can’t feel the gnawing concern as more ‘issues’ manifest themselves the older the child grows. Its tiring for the heart and mind. “What does the future hold for them? They talk about getting a job. They can’t even do school lessons meant for a child much younger than they are…” It’s sad because of the way adoption is viewed by many within the families. Add special needs in the mix, and there’s no hope of any love and kindness.

But it’s also better. It’s so much better.

These days, instead of being miserable all the time, he’s happy. Oh..so..happy! And when he’s not, he can verbalize why he’s not. (Or at least tell us what’s bothering him even if he can’t tell us why it is.) The symptoms your little one presents with to begin with might not be the ones they will continue with as they grow. And reminders in your phone might no longer make your breath catch and your palms sweat.

We all change. Neurotypical or not.

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