Parenting a disabled child

My son, Ashley, has a list of disabilities.  Readers from my old blog will be familiar with the problems we’ve encountered and the challenges we’ve overcome.

Folk have asked how we cope: how we accommodate his medication, therapies, appointments, finances etc.

They’re also curious to find out about the “disappointment” of having a disabled kid: how we mourn for the child and man that could have been; how we feel when we compare him to his able peers.

They’re a curious bunch.

The short answer is based on perspective.

Basically, it’s “what else is there?”

He’s 11 now, soon to be twelve, so we’re not Newbies.

Much of the day to day stuff is simply routine and with three other kids and an elderly Mum we rarely sit and ponder our lot in life.

Gill and I communicate. These aren’t just words. When it comes to Ashley, everything is shared. Decisions are rarely made without a conversation, even if it’s by text.

This gives us a lot of strength and stability when it comes to trusting the other partner.

Mostly we see things coming. We know the creams that don’t work. We know how to deal with lazy or arrogant consultants or their registrars.

More importantly we know him. His behaviour is transparent to us so if he’s ill we know it.

The other important aspect of our lives is the family. The world no longer revolves around him as it did when we were first dealing with his conditions.

The fun that is six people in a house all with different characters doesn’t leave time to dwell on one person too much.

Our best coping strategy is Ashley himself. His a charmer, a cuddler, a cool DJ, a smooth dancer and has an infectious laugh.

This isn’t a blog about living with disability. Some bloggers seem to dwell on this.

We blog about what we know and this family is only partly about disability, so the blog reflects this.

I look forward to your comments.


One thought on “Parenting a disabled child

  1. Yes – the medics for all their schooling and ‘wisdom’ will never know your son the way you do. I sometimes think advocating for your kids is a profession all on its own!


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