Sunday, August 26, 2012

speak up?

I've just read an article, about hate crimes against the disabled.

It got me thinking about how this behaviour starts. Is it born of ignorance? I think it is.

An incident at my youngest sons nursery highlighted it a while back for me. My son does not like his head being touched in any way, it means bath time is an elaborate game to get his hair wet, I have to use leave in conditioner, anything else would just involve too much stress. We don't brush his hair, which is getting quite long. Fortunately he has good hair so it tends not to knot. I even cut his hair while he's sleeping!

Bathing is a bit of a hit and miss thing with him too. He's not a big fan of a bath, but with a lot of distraction and play we can 'con' him into the bath.

His nursery, fortunately, have been amazing! The one time, after a couple of weeks of no bathing, they offered to help. The nursery had previously had a shower fitted in for a disabled child that they had taught, and offered with my permission to attempt a shower in school. I was so relieved to have someone offer to help that I jumped at it. He finished school that day sparkly clean (although they hadn't attempted the hair wash). It had been meltdown free, possibly as my patience had worn out, the teacher knew my son and had kept it calm and playful.

The following day, as it had gone so well, the head of nursery mentioned trying to get his hair cut in class. He absolutely breaks down at hair cutting, several child friendly salons have politely refused to cut his hair more than once as its too traumatic. Again, pleased that I was getting genuine help, I jumped at it.

She immediately turned to another mother at the nursery, who happens to run a local salon, and asked her if she'd be willing to come into the school and attempt a trim!!

Now I felt this was a bit of an ambush! So being polite the next day, I approached the mother to apologise. I told her that I was sorry, I wasn't expecting it, and that I completely understood if she didn't want to do it. She explained that she had felt a little ambushed, and that her salon insurance wouldn't cover it and she'd prefer not to do it, she was a little pissed at the situation, judging by her attitude. But what she said next hurt......

"I mean if my little girl was ill, she (the teacher) wouldn't come to my house to teach!"

I was completely lost for words, not that she noticed, she'd carried on into the school. Any one with a child that has 'invisible' special needs probably understands how hard it is to speak up at this point. If you do, it means explaining everything, and most people are completely ignorant to autism. If you don't, you are allowing the ignorance to continue and probably be passed on to her child.

My son is not sick or ill! He has Autism, and with patience and effort will develop into adult that will find his place in the world like any other.

The ignorance surrounding Autism etc. is whats holding me back from having my middle child being diagnosed. I know he's different, he even knows he's different.....do I really want others to give that difference a label? I mean I've survived this long?  With such horrific stories of bullying coming from my eldest sons school towards other children with difficulties, it terrifies me to give him that label.

What should I do? What would you do?
Do I speak out against ignorance? Or do I wait until they are older and can stand up for themselves?

xOjox

5 comments:

  1. I found that the parents of my children's peers were the least likely to be understanding about any difficulties they had.

    I think a formal diagnosis is worthwhile if it then leads on to a child getting the appropriate support they need in the education system.

    That didn't happen for us, though.

    I would have liked to speak out to explain my son's difficulties, but in reality I was so exhausted just dealing with the school, and parenting him on a daily basis, that I usually just kept quiet.

    It's hard work, and I'm sorry you're having to deal with this added stress from parents who are unable or unwilling to empathise.


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    Replies
    1. thanks for your comment. I'm very fortunate that my youngest' school is fantastic, its the local comp that I'm worried about. My middle son is very intelligent, but can be inapropriate, so maybe a diagnosis may help with adults.

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  2. I agree that a label is only needed if it will help your child in terms of working out and getting the therapies and services he needs (if any). As for awareness, I think that blogging helps and celebrities talking about their kids helps too. But I also think that there is a need to avoid stridency, as that would just deepen any existing prejudice. Let's use persuasion instead.

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    Replies
    1. thanks for commenting! I'm so unsure with my middle boy. He doesn't really require additional help with schooling, but sometimes his attitude and lack of understanding can stand in his way. Maybe a good relationship with the school might be a better way to go x

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