ASD moms....Info needed by TOMORROW!!!!

[JaysMum]

I have been in contact with a Professor who is big in the ASD world......got to try every avenue to get my J the help he needs.....he is still hitting himself with anything that he can get his grubby little mits on....and still saying he wants to die.......

He has had a look at J's paper work for us and asked us tons of questions via email and phone today.

He has told us to phone Guys Hospital tomorrow morning and speak with Dr Gillian Baird......I'm sure I have heard her name before.....who is she?
She will be expecting our call........
I didnt want to appear a total numbskull because the Prof was talking about her as if I should know who she is!!!!!!

He is sending all the info we have given him this afternoon to Dr Baird so she will know what I am talking about when I phone tomorrow at 10.30......just wish I knew what I was talking about sometimes????????

Can anyone fill me in???????

Cheersxxxxx

JimJams....the CP is based down your neck of the woods....does the name "Mike L....ham" ring any bells????

No- I only know one CP down here- however I have asked to be referred onto the cp team again and apparently I won't get the previous one I saw so maybe I'll get him. Hope you get somewhere sooon.

Have just read your post carefully Jaysmum and I think you should go for the CP. You already have input from that EP anyway and the CP would be accepted by the LEA. Mind you, won't Gillian Baird dx when you see her? She would be better than both of them.
BTW, I don't agree with that OT who said that children with ASD have balance problems and that is why they need sensory feedback. My DS has good balance and is physically very well co-ordinated BUT he needs constant sensory feedback, he's like a bloody pinball going down a corridor, touching part of the wall with a sholder, then the other side with his arm on his forehead, then to the next surface with his back and so on. Its quite funny when its not annoying! And of course he rocks, jumps, makes noises etc.

Have just had another long chat with CP....he is coming out to our house on 30th March.....he asked me why we wanted a diagnosis....my reply....

I have had enough of fighting the sysytem. I do not have the energy to carry on battling against a system which has been designed to fail. The LEA in our area have not provided a suitable educational setting for my son.The LHA have failed in their duty of care for my son in denying him access to the servives he is entitled. I can not continue fighting these bodies anymore just because my son does not have a confirmed Dx.
I want to move on. I want to have time to spend with my son...time that is taken up with writting letters and making calls is time taken away from him. I want my son to be helped and I can not help him without the correct support. I can not get the support without the diagnosis.
I want to put the past behind us and move on. I have had enough of repeating the same old phrases to everyone and anyone and hearing the same old replies of lack of funding, resources.
I want to be positive about my son and I find it difficult when I am having to constantly say "my son does this....he does that....but he cant do this and he cant do that.....
I want the negative thoughts and the feeling of injustice to go away. I want to plan our future...not dwell on the same old stories of Head Teacher did this to my son on such and such date....LEA refused this on the grounds of blardie blardie blar.....
I am tired and I dont want to be anymore.I dont want to be living in a life of uncertainty.....

Poor old sould...bet he wishes he didnt ask!!!!!

But thats how I feel and at last we will know for sure what J is presenting with. Nervous? at the moment no....but as the 30th March will draw closer.....I know I'll be dreading the knowing for sure. Does that make sense?????

i feel like i am part of this too....such is my concernXXXXXX

Ds2 has excellent balance. People often comment that he will either be a gymnast or a mountain-climber. He is always on the lookout for sensory stimulation. The OT who assessed him said that he seems to go out of his way to get sensory input but his brain doesn't seem to register that he's overloading and this leads to either a meltdown or a shutdown.

Good luck, Jaysmum. I've got no useful advice but keep checking back to follow the updates.

Jaysmum, I think your response to the CP was excellent, very clear, articulate and moving. Well done.

Thanks davros....what I failed to add was that it was said whilst I was in floods of tears....just from the relief that finally I spoke to someone who didnt dismiss me as a raving neurotic presenting with MSBP!!!!!!

I CANNOT WAIT TO MEET YOU!xx

God only knows why?????? Mrs F....Im a raving loony at the best of times....and so very disorganised....so we will probably be late....but we will get there!!!!

i am disorganised....always late.....just as well we will be at the site already!!!!

Very good response jaysmum and fingers crossed for the 30th. The reasons for wanting dx make perfect sense. Don't worry about floods of tears, I've blubbed all over the place-- they must be used to it.

Agree with davros and CT about balance etc. DS1 is constantly seeking out sensory stimulation and has wonderful balance although is dyspraxic in just about every other way (can balance perfectly on the bannisters - but you should see him climbing up and down can also fall over thin air easily).

....and the best bit is just by reading all this has made me feel stronger with the 'little hurdles' i am having to face at the moment!