Best wishes for tomorrow DEBS

[claw3]

Hope all goes well.

What time is dx meeting?

and dont forget to keep us posted

I have emailed the Consultant about it.

I also spoke to our NAS branch officer who is really good on these things and he said the same as you have said about expectations etc people sometimes have about mildness(his 15 year old has AS - dx at 7) but he says he often uses ASD to describe his son's issues and that his son did recent promotional work for the NAS and it was described as simply autism as that is what it is. He has, however, found the specific dx of Aspergers useful for his son on some occasions (perhaps not so off putting for those who do not undertsand autism).

I'd actually like both - AS which is an ASD. But even if that's not written, it's no less true and I can't insist the report is made to say that although I don't anticipate a problem with it.

Debs, i dont know if this is of any help. I asked yesterday why ASD and not HFA or AS. (i thought general ASD fits ds better and was happy to receive it, but i wanted the others there ie CAMHS, EP etc to understand why they decided on general ASD)

I was told all down to communication. Ds has a speech delay and it is hard to understand him because he mumbles and rambles. Ds found it very difficult to answer questions appropriately and he rambled quite a bit with unrelated answers or incorrect answers.

Thanks Claw. I know the distinction made between Autism and AS generally is the language delay/difficulties is not usually present in AS. They are both ASDs though

Yes totally, all autism, i suppose it boils down to which you are happy with. How are feeling now? Are you happy with the dx?

I kind of think he is very Aspie. It's a description which has always summed him up really. I wouldn't want to be missing a trick though by not making it explicit.

Interestingly, for me anyway(!), I told the teacher today. She never bothered to ask although she knew we were getting a dx yesterday. She says 'now you can just enjoy him' .

I always end up feeling defensive and say something about how the stress takes over your life but it's people like her that cause it!

I did however tell her what had been said about the Stat Ass by the Concultant and she was most peeved.

Silly woman then says 'his coordination has got much better' but then she was the one who didn't want to do the OT tasks because 'he can do all that already' - the point of the task being to develop his hand strength etc because he does these tasks so slowly he is below average.

She was also the one who decided to make him eat yesterday!

Oh and then last minute she asks if I can come on the school trip Monday as they are a person down. Mmm, sounds like she's just thinking she can do without having to handle DS on her own.

No problem when he's locked up in class!

now you can just enjoy him = stop fussing over nothing.

Its amazing how much things have improved when you start asking for help.

Grr the making him eat, this really gets me and the thing they dont seem to get and take the wrong way. Im not saying he doesnt have to do the things he finds unpleasant, just that there are ways and means of doing it and forcing him to eat is not an option

Of course all the while your ds is sitting quietly and struggling, he doesnt need help. If he might be a bit of inconvenience thats a different story.

I have been very tempted to teach ds how to throw chairs and scream when he is distressed (obviously i wouldnt, but feels like you always have to prove a point)

Interesting that they have given you a SPD as well. I asked about all of ds's other difficulties ie sensory dysfunction and was told ASD dx would cover it.

Apart from feeling pissed off with school, are you feeling ok in yourself?

We were told that too claw. But here there is no OT, so if they said he had problems in that area, they'd have to privately fund it.

That stupid teacher sounds like she doesn't believe in asd or something. i.e. there is nothing wrong, but if you're pushy enough you'll get a dx, are you happy now?

Terrible. Anyway, - one step further.

debs If aspie is the most helpful dx for your ds then it is. If it describes his difficulties in a way that other people will have an understanding of what to do to help him then it is probably better to stick with it anyway. When (if, although it seems VERY likely now) they remove apies from existance they SHOULD all default to asd anyway in terms of accessing provision. Perhaps in your case it is good to get aspie now as it keeps your options open for later.

I was rather hoping they wouldn't get rid of the dx so I could get my ds regraded to aspie later in order to open his statement but it isn't likely now. You on the other hand could use it in say, 6 years time by claiming that aspergers is out of date and insisting they ammend the statement which will make the whole contents appealable.

Could be a useful strategy/plan B.

Star aha! that makes perfect sense, had OT in old borough, dont have in new borough. New borough told me that if he needs it, they would fund to old borough. Crafty!

Yes, it is unusual to get a separate dx I think but we do have a sensory trained OT here who takes an interest in these things. Very lucky i think.

Agree about the teacher. She really hates the OT for some reason when she is the bubbliest, smiliest woman you could hope to meet. She (the OT) is however very direct. She was the one who insisted on minutes being taken and circulated at the meeting she attended.

The teacher has in the past described the OT has horrible and said she suggests ridiculous things. The OT always goes to great lengths to test things out and make practical suggestions.

I think the problem is that OT suggestions border on teaching strategies - e.g. this child has problems with writing and you should do x,y and z.

All a bit embarrassing when you didn't notice the problems yourself as a teacher!

I wonder what school will say about the idea of a termly meeting with other agencies! I wonder who will police that!!

Not me obv - I will be too busy 'enjoying' DS. Don't they know we would enjoy our kids if these peeps didn't conspire to make access to help so complicated

Claw - feeling ok I think. It was what I was kind of expecting (even hoping for) but it is really to think he has a dx after all this messsing around.

What an eye-opener the last year has been! To think, I set out believing all these people are there to help the child!

Debs, school will hate anyone who doesnt agree with them, no matter how nicely they do it. Defenses are up. She suggests ridiculous things, because in their opinion these are not necessary. They think they are not necessary because they dont understand or dont want to understand.

Yep, if i had read about the problems everyone has a year ago, i wouldnt have believed it!

All i want to do is get some help in place for ds in school and get on with my life. Do you think that is ever likely to happen? Surely it cant be a lifetime of writing letters and fighting, it must get easier at some point?

Maybe with the right teacher or the right school and a statement!

How did DS go? Didn't he start the new school this week??