More of Amber’s Diaries, By Her Mum Christine Twinkle.

 

amber17

3 February

A recent episode of Outnumbered featured this Autism joke. Am I offended..?…to be honest the actual joke is pretty poor, you can get that the computer had to have the balance resolved just because it was 0.00 made no difference, it can relate to the fact that autistic people have difficulties in leaving things unresolved.

However has humour been brought down to a level where laughing at an aspect of a disability is OK and should it be put out there to a public who may not understand what autism is fully? That is what I am offended by.

I’ve posted the joke below as quoted from mumsnet.com

Dad was on the phone, talking to some company about a bill that needed paying. Apparently the bill was for £0.00, but the company was insisting that he pay them £0.00 because the computer wouldn’t understand why he hadn’t paid.

Dad agreed to pay £0.00, but suggested that the company invest in a computer that wasn’t on the autistic spectrum.

Not very funny TBH.

8 February

First day back after the holidays and my goodness didn’t we know it! She fell at school and grazed her hands which marked them and that upset her, then the usual re adjusting. So she was fine for a while when she got back from school and then it exploded into her hurting her brother.. A lot…it got to the point where I had to call Dad to get him to take Halen to his house cos she was hurting him and hurting herself trying to get to him. I was actually shocked by what happened, usually if she becomes uncontrollable it’s aimed solely at me, but today Halen took it. He was very strong and is still her friend, but was glad to go to Dads. Hope this appointment to address this behaviour comes quickly now!

Amber’s Autism Awareness I know the whole system is flawed, I’ve said myself what if I was at that breaking point and I have to wait so long for an appointment. The only option I had was the GP so you have to rely on someone you see every now and then to deal with the issue appropriately. He doesn’t see Amber hardly ever cos she’s never sick.

15 February

Appointment Part 2-

So as I said the GP didn’t get enough down to explain why we needed an appointment in the first place…in fact they called me and said they had a letter to say they weren’t going to see Amber and then he called them and got them to see me. I have a little issue with this. Obviously the GP isn’t skilled in understanding autism otherwise he’d have known what to put down to highlight the seriousness of the situation.

Maybe he thought what he did refer on was enough…my issue is, what if this happens all the time, GP’s don’t get it so the people they are referred to think whatever he says is the case and doesn’t take on the child…remember the GP told me that they might not see her… For me this presents a good case for being able to refer yourself.

Of course you could train every GP the ins and outs of every condition or disorder so they get it right, but realistically who’s going to pay for that? No one knows your child better than you…why can’t we write the referral or make a call so this doesn’t happen. I suppose there’s rules to follow etc etc and it has to be signed off by a medical person blah blah, but wouldn’t a parent referral be much better than children and families being left with nothing after they’ve been brave enough to ask for help?? I say YES.

25 February

Autism Parent fail! – we were doing what you’d call “people games” playing catch. I got over excited cos it’s rare she will play with me for a sustained amount of time, therefore over stimulating her and got kicked in the face! Remember this kid literally doesn’t know her own strength so even a playful kick is lip busting.

Note to self – don’t forget to watch for over stimulation even if what’s going on is awesome lol.

1 March

Everything Changes – My impression of autism at the start was Amber would have certain behavior and they’d stick. Where I got this from, I’m unsure, but I always presumed the diagnosis was set in stone in a way. She’d always have a level of tolerance towards the same things; this is really not the case.

In the almost 7 years she’s been here and autistic her need for certain things changed. The most basic example I can think of is the lining up of things. She would do this all the time, there would be lines of ducks or cars in random places and she didn’t want them moved or it would cause stress.

Now her play is very much appropriate to the toy and there’s no more lines. Why? I don’t know..maybe it fulfilled a need she doesn’t have anymore. Then there’s the transfer of violence. It would always be me that she would act her aggression or stress on, but now it’s Halen. This is the most distressing change for me and her brother, but I can’t understand why.

The stress is still there, she’s just transferred the action. Why? I don’t know. When our kids change so much seemly in an instant without clear explanation, it’s hard. You tire yourself trying to work it out.. Is it her autism; is it just sibling rivalry coming in later than it would have?

The other worry is that this behavior will stick and become something she takes to. I’m confident we will resolve it, wish my skills for spotting things were a bit quicker.