Most of you know Matt is being assessed re autism at the moment. It's an on-going process, but what do I do in the mean time.

We had a big review meeting on Wednesday with 2 paediatricians, his school teacher, early education worker (Portage) and others. It was kind of useful, but not really.

Everyone agreed something wasn't right. He development was reviewed, and noted. Socially, he's gone from being at a 3 1/2 yr old level 6mths ago, to that of a child under 2yrs. He's REALLY regressed in this area, and also in that of speech. He used to have 200 signs and about 20 words, now 0 words and about 2 signs used more than once in a blue moon.

I know the paediatricians want to rule out everything else, maybe he's a stubborn 'toddler' who doesn't want to communicate, etc, etc, etc. But to me, his regression has to be more than that. That doesn't explain his repetitive behaviours, fixation with holes, lack of eye contact and complete lack of interest in others.

Anyway, the next big review is in 3mths, and in the mean time, more observations and assessments.

The thing that really bugged me was that they didn't offer anything inthe way of help. (And I guess I was a bit overwhelmed and forgot to ask for any). But he gets no speech therapy at the moment - I want it. I know he's at school all day, but why can't they incorporate that into his school day?

I've accepted there's something wrong, and now want to be pro-active and do something to help. They tell me he'll relearn some of the things he used to do, but not if we're not doing anything to help him that way.

Have you got any ideas what I should/could do? Cheers

Helen

No concrete ideas but i will ask my sister in law this weekend as two of hers are autistic. Also, we went to the speech therapy session yesterday that Jo organised and it was really worthwhile and helpful. The woman who runs it is very experienced and may be able to offer more advice and help.

But you should be getting SLT now at school! I can't quite believe that - why don't you ask the school, get in touch with your local parent partnership, etc....

Hope that has helped even a tiny bit - I am thinking of you

Love Sarah

First off.. MANY MANY Hugs to you... after dealing with our dual DX for 4 yrs now, I still feel I have alot to learn about Russell and what to do. And that "what to do" is constantly changing depending on Russell.

I think you are on the right track.. assessing, ect. One thing I DID learn was before Russell got his Autism DX the school he was at would let him stim all day and thought it was cute. So... I guess some suggestions would be to make sure they are truly taking care of his needs. You don't need an Autism DX for it. They take really good care of Russell at his school and we don't have a school DX of Autism.

I would write down your observations to have handy for the next meeting. Maybe give it to them before that. What is currently working for Matt, what areas he truly has regressed it... ask for what plans of action you all can do for him, ect. Go over his goals and reassess them too. We have to do that with Russell from time to time.

I have to say, for the regression.. Russell regresses VERY easily and can't "connect" learning. As he has gotten older, it breaks my heart more and more. So, I try really hard to figure out how to get off this boat. We do have ST and your son should to. BUT..we work on communication as a goal more then just verbal speech at the moment. We need to still work on oral movement and getting sounds out of Russell, but we work on communication.

We do total communication and you can ask if that can work for your son. So he can get input in anyway he can. I would try to not limit his input he is getting to just one or two things...kids w/Autism learn differently and he needs input in anyway he can. Also make sure he is getting sensory input in various ways if need be. That can help to.

Do you have an email addy? PM me your email addy.. I also just got a good thing on teaching kids w/Autism and I can email it to you, and you can see if would help you and the school.

I feel like I have rambled LOL.. was trying to write while getting ready to head out the door to drop my daughter off. I will be back... there also is another link to a DUAL dx write up you may or maynot have....so.. I will be back to share.

A.

http://www.disabilitysolutions.org/news.htm

You may already have seen this but this is Disability Solutions link to their newsletters... Vol 3, issues 5 & 6 I think it is... if you scroll down you will see it.. it's their DUAL DX piece.. it's 40 pages but very much worth the read. There might be other stuff there to read and pass out to others involved with your son too.

A.

Helen I have booked you in with the speech therapy ( that Sarah mentioned ) and I know we keep trying with this but please do come ( I know circumstances such as traffic etc have meant you couldn't make it

but seriously this woman has a child of her own with DS

she will work out a programme for you and help you with things

I have told her all about you


Your appointment is 5pm Thursday 19th October

If it means I have to look after your other children then I will do it cos I know that you will benefit from seeing her

Jo, it's OK - this time I will be there! It's on the calendar and we're looking forward to it. Last week was impossible - but it will happen this time.

Thanks for being patient!!!