When you become a parent to a disabled child you soon realise that life is never going to be the same again.
I am not saying it is worse, but it is undoubtedly harder. And not for the reasons that most people would think.
We are conditioned to feel “grateful” and we start to feel “grateful” for many of the things others take for granted.
Grateful that a nursery will take your child.
Grateful for a chair your child can sit in.
Grateful that a school will take your child.
Grateful that your child is “allowed” to stay for lunch.
Grateful that your child can join in with class outings.
Grateful that your child reaches the top of a waiting list.
Grateful that a wheelchair is provided, even when it doesn’t meet needs.
Grateful for the few hours of care support that you are offered…
Don’t get me wrong, I am thankful for all of these things, but I should not be made to feel so “grateful” that I don’t feel able to mention when things are not working or when they could be better.
During the first year at school we had many difficulties around inclusion. When my son was not properly included in a class outing (for the third time) I had a meeting with the Head Teacher where she said “We even changed the toilets and car park for Adam and all you do is complain”. I did not feel grateful that my older son could use a toilet when at school so I did not see why I should feel grateful that Adam could.
Was it really “complaining” to ask that my son be treated equally to others? Or did she expect me to feel grateful that my son was at her school?
Adam’s first wheelchair tipped over with him in it. We discovered that it was incorrectly set up and not fitted with safety outrigging to the front. An alternative was offered but was so heavy that he couldn’t self-propel at all. We had to argue for him to be provided with a wheelchair which he could move as well as be safe in.
So when it comes to something as seemingly frivolous as play equipment parents often don’t speak up at all. We are so used to being expected to feel grateful for the necessities that we can’t risk looking ungrateful for wanting more play opportunities.
A park near us had a new piece of equipment installed recently, a wheelchair accessible roundabout.
It is brilliant and Adam loves it!
But when his friends leave the roundabout to play on the swings, slide, climbing frame and other equipment Adam is unable to follow them.
Adam can only safely move between the roundabout and the park entrance. And that is sad!
Shouldn’t a disabled child be able to expect a fun play park experience, just as their able-bodied friends do?
If you took your able bodied child to a park and there was just one swing for them to use, despite a lot of equipment locked behind a fence, how would you feel? Would joy and gratitude be your first feelings?
Our nearest play park with more than one small wheelchair accessible roundabout is almost 100 miles away. It is a bit far to pop to for half an hour and there are no accessible toilets near it. Would it be acceptable if your able bodied child had to travel 100 miles to find a play park where they could play with others?
There is nothing wrong with gratitude.
I am grateful for many things every day.
But gratitude should not trap us.
Are you also in the gratitude trap?