Where do I go for help?

[KezT]

My son has Aspergers - he's 8, nearly 9. The last year or so have just been harder and harder, with more and more problems showing up. the latest one that is driving us nuts is a tourettes-type yelling, interspersed with pretty much non-stop groaning, but his general behavour is pretty awful too. There are days when it seems things are going OK, but more when I just don't know what to do with him! Today has been one of the latter.

 

the question I have is - where do we go for help? Surely there are some professionals out there who can help us out with at least some management ideas?

 

He is in a main-stream school, and they are really good with him. he has his own LSA who will be staying with him next year. But the summer holidays are looming......

 

he was suspended last year, and I called social services to find out if there was any help available and was (eventually) basically told to f off!!! We have had some contact with the local NAS, but that is really geared up for severely autistic children, and as I work, we rarely make the meetings which are held on a weekday morning. I did also manage to get a referral to CAMHS, but was very dissapointed when they also basically said they did not see any need to see my son as he had not (yet) shown much violence or criminal behaviour.

 

I am not an idiot, and have read up as much as I can on the internet & in the library etc and we have adjusted our lives around the fact that he needs extra care & attention and explanations etc. But there is only so much research one person can do. What I need is to be able to talk to someone who has been there before, many times, and tried different tactics - a professional of some kind!!! Does that person exist? and if so how do I find one?

 

Any advice would be welcome.

[smiley1590]

this web link may help with autism advice help and support :

 

http://www.oaasis.co.uk/Contact

 

http://www.mencap.org.uk/landing.asp?id=2220

 

http://www.mencap.org.uk/discussion.asp?id=3702

 

hope this helps some!

good luck with everything!

take care

XKLX

 

http://www.mencap.org.uk/page.asp?id=2379

 

 

 

 

[Sally44]

Has anyone seem him about the tourettes type yelling or groaning?

Although you say he is well supported in school, could his anxiety or stress levels be very high in school. If so what more can be done eg. extra breaks, allowing him to leave classrooms early so he doesn't have to go through the bustle of lots of other children etc. Has he got any sensory differences. If so have these been assessed by an OT and addressed in school?

 

Out of school, there isn't anything that I am aware of. I'm in the same situation with a relatively capable autistic child that is not severe enough to use something like Lighthouse. We do have a "Your Turn" scheme where a volunteer will accompany a child to a group activity of their choice for 10 sessions. After that the child is supposed to be 'independent'. Mine needs on-going support which they cannot offer. With support he could access most mainstream groups. But at age 8 he isn't capable of being completely independent as he has a real problem with understanding language, and therefore he needs someone to fully explain everything to him. He cannot process group instructions. So that does mean I always seem to be involved.

 

You can also contact Umbrella and they can team your family with a volunteer that can spend time with your child or support the family for a few hours every fortnight. This might be taking your child to the cinema, or accompany the family on a trip so that the volunteer can go on the rides the ASD child wants to go on repeatedly and the rest of the family can do the other stuff they want to do. There is a waiting list and we were on it for about a year before we got someone who lasted a couple of weeks and then moved house! Now we are waiting to hear of someone suitable again.

 

I would advise you to find out about parent support groups. We have a very good one that meets once a fortnight for the children to play in a gym area with bouncy castle, trampoline etc. There are qualified trainers there to watch the children and the club is open to children with ASDs their friends and siblings. The parents go into another room for cake and tea etc. This group also organises trips to places during holidays.

 

Your local council should run summer holidays clubs that cater for disabled children. That should cover those with an ASD. Social Services should be able to put you in contact with that. There might be a waiting list. Other than that, just try to organise stuff around their interests.