Not “special”.

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?

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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)

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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!

 

 

 

 

19 thoughts on “Not “special”.

  1. Honestly, I think many of us would give the same answer. I tend to say additional needs, rather than special, but then I think all my children are special, surely everyone does! This is a really good way of looking at it, and has made me think of the word in a totally different way x

    Liked by 1 person

    1. We went out with new friends today and it was so lovely to see the other children interested in our lift. They didn’t see it as “special” but as pretty awesome and I think most of them wished their cars had one too!

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  2. My little has Autism and we use the term special needs but I’ve never thought of it in this way. We’re quite early in our journey and have only ever really heard this term from the professionals, family, friends etc. This has really put it into perspective, although like you I do have a very special boy 🙂

    Liked by 1 person

  3. The great thing about blogs is that you get your voice out and heard; isn’t it. It is great to get your thoughts out. I had never though of this before reading your post and now you have me thinking…

    I bet you had a great time at the Edan project 🙂

    Liked by 1 person

  4. You’re right, they’re not special needs, they’re what should be there to give every child (and grown up) the chance to participate and enjoy the day to day stuff we ALL love. Very thought-provoking. Plus, I don’t know many parents who wouldn’t credit coffee and/or wine – I’m not a coffee drinker, but I do love a glass of wine! 😂

    Kat x

    Liked by 1 person

  5. Like you, I squirm over using the phrases ‘special’ and ‘special needs’. But, we are in a society which doesn’t yet always appreciate that differences are a good thing, and I think the choice of this word was the best they could do at the time it was introduced (whenever that was!). As society evolves, maybe there will be less thinking about them and us, and just more acceptance of everyone whatever their needs… we can live in hope! Until then, there’s wine. And chocolate 😉

    Liked by 1 person

  6. It’s not nice to single children out just because they are different. And it’s patronising to say special children are given to special people. We are all different, and we just need to be more accepting of each other. Brilliant blog post!

    Liked by 1 person

  7. First off… I am in love with Andy from cbeebies haha love the photo! Also, I whole heartedly agree with you. I dislike the term. I studied childcare and went on to pursue more education in working with children with special needs and then half way through the course they changed it to “additional support needs” which in my eyes was a hell of a lot better than just special needs although not everywhere uses the new PC term and still use disabled or special needs. Its not ideal that there are still so many terms that spilt children/people into different catagories but hopefully it gets better. I love this post and all children are unique and beautiful!

    Jordanne || Thelifeofaglasgowgirl.co.uk

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  8. I think additional needs is so much more accurate. Every child is special to their parents and some need different things than others. It’s really that simple.

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  9. I feel like them words need to die out now, when my sister was little (ahead has cerebral palsy) people use to ask my mum how she coped with a special needs child my mum would says she’s disabled not a special needs child. X

    Liked by 1 person

  10. I hate saying ‘special needs’ when talking to my children but seems to be the term used at school. I much prefer additional needs. You’re right, much more needs to be accessible for all especially children with more complex needs so they can be as involved as their fellow peers.

    Like

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