Caring when they grow taller than you

I’m not the biggest woman by any means. In fact I often find myself asking strangers in the supermarket if they would be kind enough to reach things for me. I have a step stool in my kitchen and it’s tricky finding trousers that aren’t far too long for me.

Those are all minor inconveniences of being small though compared to the biggest challenge facing me now: my teenage disabled son relies on me for all his care needs yet he’s now so much taller than I am. He’s not only taller though, he’s stronger than me too now, by quite a way.

And while that might be handy for putting bottles of water into the trolley in the supermarket (providing I can get him to understand what he’s to actually do) it raises some unique difficulties that we’re having to work through daily together.

Some things are easier to explain to him and simply require some minor adjustments like sitting him on a chair to dry his hair or shave him or having him bend down after his bath to let me dry him. Other things though are much harder like trying to reach to brush his teeth or assist with dressing him, trying to persuade him to go where I need him to or keeping up with him if he wanders away.

One step for him equals several of mine now but with no danger awareness, no spoken language and little awareness of the world around him or any ability to follow verbal instructions it’s nerve wracking taking him out now.

If he refuses to go somewhere there’s literally nothing I can do to persuade him otherwise.

Then there’s his intimate care needs. While I have spent 16 years using disabled toilets with him the looks I get now walking in with what must look like a man half my age is rather concerning. His build, facial hair and height give the appearance of man rather than a boy now and it really is more than a little uncomfortable at times in public to deal with his basic toileting needs. I dread the day we go somewhere that only has male and female facilities as this will raise even more eyebrows and make cleaning him almost impossible.

I never hear other parents mention either how life can be even more of a delicate balance with a disabled hormonal teenager. Keeping the whole family safe if he gets distressed or overwhelmed now is getting harder by the day.

Gone are the days where I could hold him to calm him and damage to property was minimum. The damage a learning disabled angry teenager can do with zero concept of cause and reaction is quite significant and very costly. I can’t ever put anything out of his reach either so more doors need locked than ever before.

Medical situations have become harder too.

During a recent seizure I literally couldn’t hold his bodyweight to prevent him choking and had to call on my husband for urgent assistance. What if my husband isn’t around when it happens again?

A few weeks ago he had his 17th general anaesthetic and it took a whole team of staff to support him through that where in the past I was able to do most of it myself. If he refuses medication I can no longer get him to change his mind. Having a simple blood tests take weeks of preparation and I still can’t guarantee it will happen as planned.

In many ways due to his size now it means he holds so much more control. I’ve had to adjust how I deal with him, keep my voice calm and reassuring, and instead of holding his hand it’s more about linking arms with his to make sure he’s safe.

It won’t be much longer before other people will be taking him out when he leaves school. While some of those people may well be taller than him the more he grows the bigger the chance than many, like me, will be much smaller than him.

Part of my job as his mum now is finding ways to make that necessarily care as easy and as safe as possible for everyone, which really isn’t easy when someone requires 24/7 care and they are head and shoulders bigger than you are.

I’ll always be his mum though no matter how tall he grows and he will always need me for the rest of his life.

I just pray I don’t shrink the older I get!