You Have To Fight For What Your Child Needs
0 comment Saturday, July 5, 2014 |
I'm going to seethe a moment here....
A woman complained recently that her son, who is 6 years old and autistic, is about to lose his speech therapy plan. The response from Mr Cameron was not exactly encouraging. "You have to make the fight" to get what your children need, is his response.
Excuse me, what planet are you on, Dave? As the mother of an autistic child all I have been doing for the past four years is fight for my son's needs. I fought to get him a Statement, then I had to fight for the Statement to be changed. Then I fought again to get him appropriate support as the Statement didn't give enough, and now we're having emergency review two. I've threatened to take my son out of school due to his behaviour and that has been a fight of the past year - the NAS society psychologist dropped in this week and admitted the school is woefully incapable when it comes to autistic children, but the only reason they're scrambling now is I called their bluff. They were going to put off any meeting for a review until sometime in March. When I wrote my letter to the LEA, suddenly they were able to hold an emergency meeting next Wed. And so it goes, and so it has gone for four bloody years of tears and monthly meetings, phone calls from the school and a lot of commiserating looks and zero action from the local council.
As a parent of a disabled child, you have to fight for everything; care plans and equipment, education and transport, inclusion and respite care. Even before all these cuts and tightening-the-belt bollocks, nothing has ever been given out with ease. I got no help from the council for garden accessibility for my son even though recent clauses make garden access for disabled people a right. I get no help with respite care, no assistance with getting equipment for my son's room, and it was me to told the school about the various autism education projects out there because they didn't even bother to look for them.
I can heartily assure the Right Honourable Gentleman that the mother in question probably fought tooth and claw to get her child the speech and language provision for her child. Chances are she fought like hell to get him diagnosed as there seems to be a decided reluctance for labelling children with autism in the medical profession which hinders any progress you might be able to make. She fights every day. The patronising language of a man who had enough money to hire as many nannies, equipment and medical help he needed when his own son was alive makes me ill. Not all of us have well lined pockets, and if you never actually work with the social system and realise how much you have to beg for even the simplest of items, you have no idea how much of a battle everything is.
This Big Society thing is such bollocks; I know everyone keeps going on about Egypt but I can't help but think we're long overdue for a bit less of the stiff-upper-lip and a bit more revolution.

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