Wheely Pampered

Kerry Fender by Kerry Fender Additional Needs

Kerry Fender

Kerry Fender

Down’s Syndrome, my family and me – one mum’s account of family life with an extra chromosome.

‘Ooh! I see you’re pampering him again.’

It’s a good job I was looking down, tucking a blanket around Freddie’s legs as he sat in his wheelchair, because the WTAF moment I experienced was written all over my face.

I could feel it.

I couldn’t quite believe she’s said it again – I’d explained about hypermobility and hypertonia the previous week.

It was a grey and drizzly Tuesday afternoon, and I was rushing to get Freddie from school to his swimming lesson, half-an-hour’s walk away.

Apart from being an important life skill, swimming has also proved to be beneficial for Freddie’s sense of balance.

But to ask him to walk for thirty minutes at the end of the school day and then swim would be asking too much of his body, so I would always bring the chair on Tuesdays, so I could push him there while he ate a snack, keeping warm under a blanket if necessary.

Maybe it was the addition of the blanket that had rattled her cage: we hadn’t needed one the week before, so I’d had no reason to explain that Freddie finds it difficult to regulate his own body temperature – a thing some people with Down’s Syndrome experience.

It didn’t occur to me at the time to ask if she thought that perhaps allowing my son to get wet and hypothermic would teach his body to govern its own temperature better, or perhaps that she too was pampering her child by putting them on reins so that they couldn’t run into the road – surely a little altercation with a Ford Fiesta would soon teach them to have a sense of danger.

It didn’t occur to me to say such a thing because her child clearly needs that extra help to keep them safe.

Giving a person what they need to keep them safe and well is NOT pampering them, even if the things they need are different to the things most other people need.

I am used to being on the receiving end of this kind of nonsense from random members of the public, but to hear it from another mum of a child with additional needs was especially galling.

I would’ve thought that she, of all people, would have understood that I cannot parent the extra chromosome out of my child any more than she can parent her child’s condition out of them.

We must simply do whatever we can to help our kids function in a world that is not organized with people like them in mind.

I wonder – would she have thought I was pampering him if I had bundled him into a nice, heated car for the journey to the pool? I doubt it.

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