I really don’t like the term “special needs”.
There, I have said it!
I feel like I should duck and hide because many will disagree, but this is my feeling to share.
My son does not have “special needs” and I am not a “special parent”.
No, he can’t sit unaided, or stand, or walk, or feed himself with a spoon, or cope with loud noises or busy places or, well, quite a lot of things, but does that make him “special”?
Of course my son is a very special person and, yes, he does have some needs which are different to most other children. He has some extra needs. Additional needs. Different needs.
If you have more than one child you probably noticed very early on just how different they were. Even with twins.
I do realise that with my little boy it isn’t just a case of needing a bit more help with his buttons than his brother did. I am not blinkered. But does he really need “special” help?
He needs a car with a lift and with tracking to enable him to travel in his wheelchair. It really isn’t that special and, frankly, it would not be my first choice for a car! I always wanted a Jaguar. A dark green one. Oh yes, THAT would be special!
He needs equipment to enable him to move. Yes, that stuff is pretty cool. But is it “special” or is it just something he needs, like when a person needs glasses?
He needs help to play but most parks don’t have any equipment he can use. He doesn’t really want “special” equipment, just accessible equipment.
A strong friend lifted him onto a roundabout recently. (We are blessed with wonderful friends.) But it wasn’t accessible or inclusive. An inclusive one would have enabled all the children to play together, whether sat in a chair, standing with a frame, sat on a seat or just standing up and holding on.
But inclusive equipment isn’t really “special” either. It is something every child can use. If a park is accessible to a child with significant disabilities, then it is accessible to all.
A while back he really wanted to go into a shoe shop and I knew it would be difficult for him, due to the noise. So I asked them to turn the music down. Easy really! Autism didn’t stop him from going in the shop, loud music did. He actually wasn’t that “special” in his need for a little quiet. Several staff members commented about how much nicer it was without the music and I also preferred shopping in peace and quiet. I think many of us do! (Possibly especially so if you are a parent to small people who make constant demands)
Yes, he needs extra equipment for something as basic and ordinary as using the toilet, but again, it isn’t actually that “special”.
Looks a bit boring, really, doesn’t it?
Just a bit of tracking on the ceiling and a hoist to do the heavy work. A simple fold down changing table over the bath.
What stands out most in my bathroom is the funky blue grouting!
Adam was able to see Andy Day from CBeebies at The Eden Project this week. The Changing Places toilet made it possible to go to Eden and a staff member (Emily) helped by ensuring that he could wait in a quiet area till everyone else had met Andy. He needed to wait in a different place, that’s all.
Then there is the old “God only gives special children to special parents”. Really? Because I know a huge number of parents who cry a lot and are physically and mentally exhausted. Many would describe themselves as “broken”.
Not because of their child but because of how hard it is to access the right help or even a few hours of support each week. Or sometimes just how hard it is to get the right wheelchair.
They ARE an awesome bunch of people but I don’t think any of the parents I know think they were special enough to be given a child with disabilities. They have learned over the years, they have grown a thicker skin, got used to functioning on 4 hours of broken sleep each night and become experts in all manner of care whilst also learning how to navigate the battlefields of health, social care and educational needs. (Oh, and learning all they can about the law so that they can ensure their child has their needs met.)
A while back a professional involved in my son’s care asked how I cope.
I had to bite my tongue in case the answer “coffee and wine” made me look bad! 🙂
Although most of my friends would probably give the same answer!