I just read an article for parents with special needs children and the very first line left me pondering.
The article was about how traumatizing having a child with special needs is and how it changes your life. (Very true) They started off by saying that the birth of a child with a disability or the discovery that a child has a disability can have a major effect on the the family. (Again - Very true)
I have no problem with the article that I read, in fact it was very good but it made me stop and think about how quickly people make presumptions.
There is an assumption in society that children are born with their disability and it was detected at birth or their parents found out later.
My experience has been that people presume Cameron's disability was acquired at birth and when we tell our story they are most often shocked. It seems incomprehensible that a perfect little baby could end up like Cameron with brain damage.
Generally people think of car accident victims in wheelchairs when they think about people acquiring disabilities during their life. Some people will think about people destroying their brains from substance abuse or older people who have suffered a stroke. They don't think about little babies fighting for their life to stay alive and then ending up reliant on others for the rest of their lives.
Through my efforts to promote awareness of Meningitis I find a lot of people don't realize that people can be left with disabilities after an illness. Sadly this happens a lot more than society realizes.
I have never forgotten walking through a fair one day with Cameron walking very slowly in front of me in his K Walker and behind me I could hear a boy of about 7yrs of age ask his father why Cameron was walking like that. His father launched into a complicated, made up explanation about how when the little boy was born his legs didn't work properly and he needs the frame to walk and he will for the rest of his life. I was shocked.
These days I might be brave enough to turn around and gently explain the truth to that little boy but back then my mouth dropped open and my brain spun out for a second. Firstly with - how can you say that, you don't know us and then what would I say if my child asked that same question about someone with a disability.
Our lives are full of people with disabilities and consequently my daughter has asked me on many occasions why somebody is the way they are and she has just recently been going through that embarrassing phase where she points out somebodies differences in a loud voice to me.
So on that point I would like to apologize to the teacher we walk past after school once a week who is bald. I just know she's heard My Little Angel announce at the top of her lungs - look mum that lady has no hair. I keep looking for her volume button but I can't find it. And yes we have had a discussion, on several occasions as to why she might be bald - choice, illness, Shave for a Cure, her hair fell out, just cause but it still comes as a shock to her almost every week when we walk past.
If I know the truth I will tell My Little Angel the truth but if I don't then we will discuss the possible reasons for that persons disability so she knows that the person could have been born that way or they may have got sick or they may have had an accident but we don't know. I believe honestly is the best policy and if I have no idea then I'm honest and say I don't know.
Have you had people make presumptions about your family member or friends disability?
How do you handle your child's questions about someone with a disability?
I have a little boy in my class who has austism. His mother was telling me she was shopping yesterday and he was having a bit of screamy meltdown. A woman of about 60 said to her in a very blunt way that naughty children needed a good smack! She was able to reply loudly that smacking an autistic child was not appropriate and apparently the woman just shrank in embarrassment! But it still upset her a lot that people feel it is ok to comment on a situation they know nothing about.
ReplyDeleteWith my own children, they are lucky enough to have known Cam all their lives and know he got sick and his brain was injured. They accept that without any trouble and I feel it has helped them accept other disabled people fairly easily. My son invited family and friends to his birthday last year and prepped his mates on Cam. He explained what had happened to him and how he doesn't speak etc and they all accepted him on the day.
ReplyDeleteThat poor Mum. I hope that older lady went home and had a good think about what she did. People are always so quick to judge.
ReplyDeleteI didn't know Sam told his friends about Cam. What a hero. The boys were really great with Cam I remember noticing how accepting they were of him and comfortable. We need a world of Sams to get out there and make people feel comfortable. Says alot about your parenting too. Hug
I think everybody who has a child with a disability has experienced people making presumptions, haven't they? People presume all sorts about Paul. I've heard everything from "God made him that way" (acceptable even though I don't believe in God myself) to "He probably didn't let his mummy look after him properly, that's why you have to do what I tell you" (Erm...excuse me?). It isn't just the general public though - I've known doctors who jump to conclusions about Paul, too.
ReplyDeleteI can't remember my other children ever asking about people who are "different". I guess growing up with Paul as their older brother gave them an understanding because the kids are Paul's school had LD for all sorts of reasons. One little girl was stung on the back of the neck by a wasp when she was about 6 and as it penetrated her central nerve, her brain was damaged. It can truly happen to anybody.
I can not believe anyone would be so rude as to say you didn't look after him properly. That is so rude - unbelievable!
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