'Disabled' - The Word I've Never Used For My Son

Written by Amy Slaven for her blog, Willing Wilson.

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Disabled… Not a word I have ever used when describing Wilson, ever.

I first knew there was something other than “just reflux” when he wasn’t reaching his milestones, I was even told once that it was because I didn’t give him enough tummy time, or because he needed held a lot with him being so unsettled all the time that he maybe didn’t have the chance to learn to sit up but “don’t worry, he’ll catch up, he’ll be fine!”

Well yes, he’s more than fine.. he’s amazing!

But deep down my mothers instinct told me to keep pushing for more answers, and I’m obviously glad I did! But even after we got answers and we knew what the reason behind Wilson not reaching his milestones were never once did it enter my mind that my child had a disability, I never seen it that way.

Admittedly, as Wilson is getting older (and heavier!) it’s getting a little more challenging to do daily tasks but we manage, I’ve always included him and never seen anything as a problem. Until today. Wilson’s squiggles chair (the chair he has had for a long time and provides full support in a sitting position) was supposed to be getting picked up and taken to his nursery today for him starting soon, it was all very exciting as we were given another chair, one that provided less support but still looked great and had its own little table so I seen no problems with this! I just thought he has been doing so well that he would cope just fine. But after having this chair for a few days and trying him in it at different points throughout the day, I started to get a knot in my stomach, I felt worried, anxious and a bit nervous because it was quite clear that he isn’t ready yet.

He still needs the full support and there’s no way we could manage without his squiggles chair at home.

I had a chat with his occupational therapist this morning and she advised we keep the chair at home rather than send it to nursery, she said we will try get another chair for nursery but couldn’t tell me when this would be. After having this conversation I was really upset and even had to leave Wilson and his big sister Ava for a minute with their programmes on to have a bit of a cry, I honestly couldn’t work out why this had made me so upset, he would be fine at home as we were keeping his full support chair here so why was I feeling this way!?

Because it’s the first time that I’ve actually had to accept that Wilson has a disability and things won’t always work out the way they should.

I don’t know if he will be able to start nursery in a couple of weeks as planned as he’ll have no seating or anything there, he had started his settling in sessions and fully understood that he was going to be starting properly very soon. I was also convinced that he was ready to move on from his chair to one with less support, we work so hard with physio daily and he does so, so well that seeing him unable to move on to less support gave me a lump in my throat. I am incredibly proud of Wilson and I need to remind myself how far he has come, we were told that he may never be able to eat properly or talk and look at him now! He’ll eat anything and doesn’t stop talking it did feel like a step back today but in reality it wasn’t, just wasn’t a step forward. I have no doubt that he will get there though. Some days are easy. Some days are hard. It’s how you overcome the hard days that makes the difference, I’ve learned today that there will be times in Wilson’s life that he won’t be able to do things that I would maybe hope for him to do but it’s his happiness that matters.

Today I made a decision, a decision that would keep him happy. And that, as a parent is the best thing I can do for my child.