- We had an appointment at the hospital on Tuesday. Now this post may be a bit random at times because I’m still trying to process it. The consultant has discharged Oliver from the paediatric hospital service aged 5. There’s nothing they can do for him.
Now on one hand it’s nice to have some honesty but on the other hand it’s 20 years since Max was diagnosed and there’s still nothing they can do? I know the NHS is at breaking point, so I understand them wanting to lighten their books and get rid of cases where they can’t do anything. But it feels like we have just been basically told to get on with it. The doctor said “yes his behaviour might be unmanageable now but it may calm down as he grows up. We have no sleep clinic here it’s miles away and I don’t know how you go about referrals” which made me ask who does know? Apparently family support groups can help but they are full round here and aren’t really able to help anyone else at the moment. Social workers are overworked and we aren’t an at risk family so no chance of getting one of them. School nurse should know more. If anymore non-autistic behaviours arise see GP for a referral. The problem is as I learned through Max, is that all behaviours are put down to autism once they have a diagnosis.
I feel quite alone now and that it’s down to me doing the speech therapy work- we have a great ST, he sees her once a month and she has given me her phone numbers so I can check I’m on the right track. School aren’t doing his IEP’s, he actually got sent home with homework last Friday and asking around it was the same as everyone else’s- Finding Nouns. So you can guess how well that went down. I know he’s my child and my responsibility, but surely school should be doing their part as they agreed to take him and the extra funding he came with.
I wonder if deep down I was expecting more from the professionals, if I was expecting science had moved on in 20 years. I suppose it has in a way because the doctor made sure to point out to me that it was probably something from my genes that made him this way. It’s always nice to hear that. We have our first appointment at genetic counselling next month so we’ll see what they say. I think overall I feel abandoned. It’s down to me and the ST to reach him and make him fulfil his potential- whatever that may be. I am not trying to make him conform, like school is, I’m trying to find a way into his world and share mine and maybe meet somewhere in the middle. I’m trying to find a way to ease his frustration and make him happy. I’m trying to stop the violence and tantrums and tears. I’m trying to get people to realise he’s just as important as everyone else and has a voice and rights. I’m trying to make him know he’s loved, no matter what he does. I’m not worried he will fail- he can’t, I’m worried I’ll fail him.
He’s different- not less.