I Worry About My Disabled Child Getting Older

Miriam Gwynne by Miriam Gwynne Additional Needs

Miriam Gwynne

Miriam Gwynne

Full time mum and carer for two truly wonderful autistic twins. I love reading, writing, walking, swimming and encouraging others. Don’t struggle a...

Ten. Wow how did my child suddenly reach ten years old? Double figures come with quite a fear for me. My disabled son is growing up and I am terrified.

Soon he will finish primary school and I will have to face high school. He has yet to reach milestones that toddlers reach. He relies on others to meet his every need from food, to personal care to communication.

He is vulnerable with a capital V.

When he was little people helped more. He was the ‘cute disabled child’ and society looked on him with compassion. That changed as he grew and now at ten his behaviour is seen as ‘inappropriate’ and ‘embarrassing’ by society. Yet he is still the same child.

While he is at primary school I get to know his teacher, his peers and see photographs of what he is doing. I get to be involved because he is young.

But as he ages so do expectations and schools start to encourage independence and autonomy. Yet my child’s needs haven’t changed. He is still nonverbal. He is still fully dependent on others. The information and ‘news’ slowly become less and the opportunities to be involved slow down.

My disabled child is very soon going to be a disabled teenager and I am scared.

He’s not ready for the world and the world isn’t ready for him.

I can’t bury my head in the sand any longer pretending the future is a long way away. It is right in front of me now. My disabled son is almost my height. His feet are almost as big as mine.

He will enter puberty soon and then what? Dealing with teenagers is difficult, dealing with a nonverbal, epileptic, autistic, incontinent teenager will be a major challenge.

I think society expects children to grow out of their disabilities as they age.

This doesn’t happen and I am struggling.

It was OK to take my four-year-old into a baby change but how do I change a ten-year-old in the same room? It was OK to deal with my five-year-old screaming in meltdown when I could strap him safely into a wheelchair and move on.

What do I do now when my ten-year-old, four stone, four-and-a-half-foot tall son has a meltdown in public now?

This is scary.

His needs haven’t changed but societies perception of him has.

Developmentally my son will always be a toddler. So, what do I do when he’s too tall for soft play and can’t understand why?

When he was seven and I used family changing rooms at swimming no-one batted an eyelid. Now mums with babies look at me strangely when I come out of the same room with my arm tightly round my son’s arm despite the fact he’s almost my height.

It’s no longer the ‘norm’.

His disabilities are more obvious now than ever.

He’s more vulnerable than ever.

I am terrified of what adult life will bring.

Carers for disabled children are easier to find than those for disabled teenagers and adults. There’re new elements now like hormones, size, having to do different activities than he did as a child and let’s not forget that his peers are no longer the nice little innocent children of primary school.

I can’t carry him any longer.

Getting him out the bath when he has a seizure is now more dangerous than ever.

If he refuses to do something I physically can’t make him, even if that puts him in danger.

Developmentally a baby but physically almost an adult.

That’s why I worry about my disabled child getting older.

It happened too soon.

I’m scared.

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