Saturday, 26 February 2011

Harsh

I've read a couple of things on blogs over the past few weeks that have bothered me intensely as being grossly unfair. I won't go into specifics, but basically it's been people who have no idea what they are talking about criticising parents of special needs children.

Years ago when I was studying to become a SENCO (Special Educational Needs Coordinator) one small paragraph in the blurb we were given to read stood out for me as crucially important.  It was this:

'Never judge the parents of a child with special needs'

This was advice to those working with SEN children and I felt it should be put on a plaque somewhere prominent in every school.  As a parent of a child with Down's syndrome, I have experienced many thoughtless comments by members of staff in various schools and have had to mostly put them down to the other person having no idea what I go through on a daily basis and try to ignore them.  Sometimes I have protested - how about when I was told not to send apples in her lunchbox as her method of eating them was embarrassing? (Now seriously, would a teacher say that to the parents of a 'normal' child? Ever?)

The point is, unless you have intimate knowledge of what those parents lives are like when dealing with their child, you have no right to make assumptions and put in your twopenny-worth.  It's hard to remember this - we are all guilty of it with everyone we meet, it's a human trait. But when thinking about someone who cares 24/7, seven days a week, 365 days a year for their child with special needs, it pays to have a grain of empathy.  If you see that mum looking frazzled and angry, dragging a surly child into school ten minutes late with breakfast all down it's front and shirt untucked, do you immediately think what a bad parent she is? Or does it cross your mind that she might have had very little sleep that night, had to deal with one of 'those' mornings where her child is on a 'go slow' (if you have a child with Down's, you'll know what I'm talking about!) and it has been impossible to get them dressed, fed, washed and out of the door in time for school without major meltdowns, as well as perhaps having siblings to get ready too. 

There are other times when perhaps they are being a 'bad parent' but are at the same time going through very hard times emotionally or financially and just aren't coping. Then they don't need your judgement, they need your help.

A phrase I read quoted on a blog, written by a reporter in a newspaper, was that these parents 'wear their child's disability like a thorny crown' meaning that we use it to gain sympathy and to achieve what we want. Nothing could be further from the truth.  The hard fact is, your child's disability becomes a major part of your life and something that cannot and should not be ignored or not talked about just in case it embarrasses someone else.  Other parents complain about their kids keeping bad company or being rude and untidy at home and we are sympathetic; however, if the parents of a special needs child have a much needed moan about how many times they had to clean up excrement that day or about the huge tantrum thrown in the shopping centre because the child is scared of crowds, there is an uncomfortable silence. We are not looking for martyrdom, just someone to say 'Wow, that must have been hard for you, how are you doing?'  Most of the time we cope and can live our lives with a smile on our faces, but it must be remembered that sometimes it is not easy and we are allowed to have bad days.  We don't do it on purpose to make the rest of the population feel uncomfortable, it's just the way it is and we are doing the best we can under the circumstances.  Giving birth to a child with special needs is not a life choice, it is something that just happens - we all deal with it in our own way, the best way we can, and if it doesn't measure up to what you think is the best way, don't make harsh judgements, try offering a little help and understanding instead.

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