At Z’s doctors meeting he asked was we struggling with anything in particular, ok sleep is a big one, he was willing to write a prescription for melatonin, he’s still young, we go through phases, it’s not every night. I explained I’ll see how full time school goes, and obviously if he gets worse I’ll ring. I mentioned how Z can’t deal if the car isn’t outside the front gate. He said he would refer me to occupational therapy see if they could help get a disabled space or help with a drive. Occupational therapy said they didn’t do house adaptations they helped with buttons and cutlery, apologised and said try social services. Z had another appointment so I waited, explained to doctor what occupational therapy said to me. This was a new doctor he said there has to be someone who can help.
This week a phone call of a lady from social services saying he had been referred but she’s really sorry and it’s not something they can do but try this part of social services.
Yesterday I rang that part of social services.
Words failed me.
I was shocked.
Apparently autism isn’t a disability it’s a behaviour problem.
When I rang and explained how I had gotten her number her attitude was appalling from the start. She asked me does my son walk, I replied yes, she said no one would help, the doctor don’t know what he’s talking about because Z isn’t disabled, he has legs and can walk .
She asked what happens if the car isn’t where he can see it, I said he gets upset, he can run or throw himself to the floor. I explained that if it’s there and we walk up away from it he knows we’re walking to the bus, if it’s there and we walk down we are meeting grampa. If the car isn’t there and have to walk to it he can’t understand that, it’s confusing it’s not his routine. Her reply threw me. If I can’t manage my sons behaviour I need to be referred to a behaviour specialist that would put actions in place so the car can be parked anywhere and Z would be fine. So I said ok thank you, it’s ok I’ll go and get a loan from the bank and do it myself, I was just told someone maybe able to help me financially. To be told that putting a drive there would be spoiling him, not everything in life is always where it should be.
The way she spoke to me I wanted to cry, not because someone had told me no, but the attitude, how dare she tell me I can’t manage my child’s behaviour, she knows nothing about me, she knows nothing about Z. Putting a drive there isn’t spoiling him, the way I see it I’m looking after him as a parent should do. Does that mean the locks I have on the window shouldn’t be there? Is that spoiling him? Should I let him open the window and fall out, because well he has to learn that just because a window looks closed it’s not? Same goes for my locks on my doors, should I just leave him in the kitchen because the oven isn’t always on and well when it is if he burns himself he’ll learn that it’s hot? Really?!
She asked me does he talk, I said no, he babbles but don’t speak, her reply, oh speech and language will work with that and get him talking. Does she not know that speech and language sign children off, and they get an hour maybe once a week sometimes not even that in school?
What if I was struggling mentally, lack of sleep can do that to someone, she had no idea who I was. I was ringing for help, not to be told that I can’t manage my sons behaviour. As I said I partly wanted to cry, more out of anger and shock than anything else. How can someone be so rude. How does she know that I would have been fine when I put the phone down, I could have cried, it could have stopped me asking for any help when and if I really need it. I could have just built up all my strength to ask for that help to be knocked down in less than a minute with not a care in the world.
And that is why I have no faith in social services, yes I could put a formal complaint in, but where would it get me? An apology? Doubt it. I’m big enough to ‘take on’ a store or a person by social services, I don’t think I’m that big!
But for someone working with vulnerable children and adults, she sure needs some autism awareness. If autism was a behaviour issue then my son would be a nightmare. I can honestly say out of a few Nuro typical children we bother with, Z is the most well behaved one there. He listens to no, I can manage his behaviour. I will not ask for help again, I’m glad it’s written in his notes that he’s struggling with this area, also the whole time he’s been in school he’s had one bad day, that one day was when the car wasn’t parked outside, we were walking but had to pass the car, he refused to walk, he stood by the car crying so call it spoilt but we went in the car!