Aspergers/ASD support thread

andycarmi

HI Dummie, Hopefully the new HV and GP will be more helpful. I would phone anyone who will listen and keep phoning the more they hear your name the more you will be in their mind!

What about asking for a referal to a SLT?

Dummie_2

Carmina Piranha - which area are you from? I can't believe you got a referral at 18mths. No one would even listen to me until DS was at least 2.

Andycarmi - I did originally ask for a referral to a SLT but they wouldn't consider it under they ruled out there was nothing wrong with his hearing. I also tried to self refer to a SLT but when they sent me the form to complete they also asked for a hearing test result report. It's so fraustrating because I know there is nothing wrong with his hearing. Why do they have to waste all this time and money testing his hearing?

The doctor's surgery gave me the contact number for the HV. I called her immediately and explained that before we moved we were due a 2yr assessment so would like to arrange one with her. She (well, her secretary!) said that the assessments are done by completing a questionnaire! Oh well. Just going to wait for the form to come through the post.

Also got to wait a while for our health records to be transferred to our new GP before we can make an appointment to see him to get the ball rolling again re the hearing test.

Really want to scream. Time is ticking by and thinking about him starting nursery at 3yrs so much behind the other children there really scares me as it'll just push him further and further behind.

andycarmi

Dummie wrote: »

Carmina Piranha - which area are you from? I can't believe you got a referral at 18mths. No one would even listen to me until DS was at least 2.

Andycarmi - I did originally ask for a referral to a SLT but they wouldn't consider it under they ruled out there was nothing wrong with his hearing. I also tried to self refer to a SLT but when they sent me the form to complete they also asked for a hearing test result report. It's so fraustrating because I know there is nothing wrong with his hearing. Why do they have to waste all this time and money testing his hearing?


.

Dummie do you live in an area with a sure start centre?

andycarmi

Dummie if you are thinking private (which you shouldn't have too) look here.
http://www.helpwithtalking.com/

sarkky1

i read the first 8 - 9 replies t you and the last couple but will def read all tomorrow.i just finished a 2 year college degree.and my lecturer or one of them ishould say,is doing a masters in autism at uni.i think this is his 6th year..and he says what they know now is amazin ,and i think it late this year o early next year there will be new paper work printed for release to update doctors and nurses everywhere of how to tell easier and younger.
but i know in scotland,andonly cos he told us constantly of his "good deed" the day before all the time,is that there are lots of centers where you can get your child diagnosed.and you can do it y contacting the autistic society online .....who will be more than happy to help...

in another note.my nephew has autism,and from about 8 or 9 weeks i noticed he dient cry much,and he was so contented..then as he grew,he didnt mix with other kids,or make eye contact,but he was brilliant with music.but his loudness and style that we learned to know.but we fed him,by turning the egg timer over,and when it was finished he sat at the table and ate,and this happened every meal,cos he used to be a nightmare t feed,but the little bit of routine worked,,,anyway, i;ve said too much i think ,,but contact the website,who will be more than happy to help......

Carmina_Piranha_3

i'm in staffordshire, but my son is ten so this was before surestart centres existed i think. we have a child development centre. we had seen this health visitor since he was born and she knew there was something different about him - she was certain it was autism. everyone told me he was really young for being sent to SLT though. he didn't understand anything at that age, but the health visitor knew it would be 6 months or so before we were actually given an appointment so she wanted to get us in the queue.

i hope you can get help soon! can you refer yourselves for assessment? i read in the birth to five book last night that children under 2 can be assessed for special needs if the parent requests it, the book was talking about being statemented for education but perhaps the same applies to SLT.

Dummie_2

Andycarmi - I'm afriad there's no surestart centre were we are now which is a shame because the SLT from surestart where we used to live has written us a letter re her visit to us in Aug last year which recommends a follow-up. Thanks for the link on private SLT. I shall be looking into that.

I think I'm going to wait until I can make an appointment with our new GP and see what help they are able to offer. If I don't feel I'm getting anywhere with them I will call our local Primary Care Trust to see if they are able to advise the way we should go about this whole thing.

Carmina Piranha - I'm so shocked that the level of care and assistance we receive varies so greatly from county to county. Hey, can you send your HV down my way?

Thanks again for your replies. You're all keeping me going :T

Savvy_Sue

Dummie, it is frustrating to have moved and feel you are back to square one, but maybe phone the PCT and ask how long it takes to transfer records. I believe it's a bit faster if you re-register quickly - obviously they're not going to send records through until asked for them, they won't even know you've moved sometimes!

That bit about being able to ask for assessment yourself is useful too: you could say to the HV that you do not feel a questionnaire assessment is going to get you very far, you are already sure there is a developmental problem, and you want things got moving.

And I know this is a bit backwards, but I would urge you not to 'worry' about your DS starting nursery 'so far behind'. If he starts school with obvious needs, then they WILL be addressed. Yes, in an ideal world they would be addressed sooner than that, but as we all know this isn't an ideal world!

Dummie_2

Savvy_Sue wrote: »

And I know this is a bit backwards, but I would urge you not to 'worry' about your DS starting nursery 'so far behind'. If he starts school with obvious needs, then they WILL be addressed. Yes, in an ideal world they would be addressed sooner than that, but as we all know this isn't an ideal world!

Hi Savvy Sue - so glad you are still here. You too AndyCarmi and Carmina Piranha.

You know. In a way, what you've said above brings some kind of comfort. That this battle to get the help I feel DS needs won't be never ending.

andycarmi

You Know its sad they way you have to fight for it but your DS WILL do well because he has a Mum that will push and fight for him and for what he needs. He is a lucky boy to have a Mum like you and sure you feel just a lucky to have a DS like him.

Hope you get the support you need ASAP. x