Aspergers/ASD support thread

Snaggles

Savvy_Sue wrote: »

However, you are most definitely the BEST PARENT YOUR CHILD WILL EVER HAVE! No-one could love them more or care for them better.

What a lovely thing to say by the way, it made me well up. :A

Snaggles

D&DD, that's one thing that I'm quite scared of - up until now Ryan has been different only in quite subtle ways, but the gap between him and his peers suddenly seems to be getting bigger. The SALT that is attatched to his school is lovely, she did some assessments with him and sent her report to CAMHS, but he's not one of her 'official' cases unless CAMHS do decide on an ASD diagnosis, and refer the case back to her.

Two weeks to go until they decide.....I feel like our future is completely in their hands at the moment and it's not a very comfortable feeling.

Savvy_Sue

Rovers, can you learn some choice phrases in your MIL's language? "I do not wish to discuss this" or "Get a grip ..." or even "Well, it's too late to worry about that now, are you going to support your DGS or just moan that it's my fault?"

D&DD

Savvy_Sue wrote: »

Rovers, can you learn some choice phrases in your MIL's language? "I do not wish to discuss this" or "Get a grip ..." or even "Well, it's too late to worry about that now, are you going to support your DGS or just moan that it's my fault?"

:rotfl: :T
Ok Savvy..well I was going for the subtle approach lol:rolleyes: never mind

Snaggles would your Senco refer you to SALT in the meantime?? The probs our kids have with processing/semantics etc is a lifelong problem and they still need speech therapy although they can talk..some Sencos wont refer if their speech is what they see as 'normal'..you may have to fight for it but it should be possible to get

Snaggles

I'm hoping we may have a diagnosis soon, but if not, I will definitely push for Ryan to see the SALT again - he really took to her, so it would be fantastic if he was referred to her, but she did say that even if he isn't referred, we can ring her whenever we like if we have any questions or concerns and she will try to help.

She was really lovely with him - within 5 minutes of us arriving at her office she was sitting on the floor building a dalek out of stickle bricks with him!

D&DD

pleased to hear that Snaggles it made such a huge difference for us having a SALT we all felt comfortable with like that:D She has been promoted now sadly (for us!!) so we have a new one not met her yet or had any contact..think I need to get her 'trained' lol

quietheart

I would have thought that any child with suspected ASD would be under a community paediatrician. He has done all the referring for my son. He's been seeing him since he was 2.5 and finally referred him to the Psychiatrist in case he was "missing something".
There's a CAMHS autism unit only a mile from where we live, they have said they will support Jude throughout school and come to IEP's, help us get his statement amended, will work together with OT as he seems to be dyspraxic as well. I'm surprised that there doesn't seem to be much support on hand for your kids, i am counting myself lucky now.
Back to MIL, I have tried the direct approach with her before but she doesn't hear it, she just continues, it's quite impressive to watch. The ultimate dog with a bone....
Snaggles, I really hope you do get your diagnosis. From talking atthe unit yesterday it seemed like most parents aren't aware or don't want that diagnosis, for you to be so sure of it I'm sure you're right and will get there soon.

Snaggles

Ryan isn't actually under anyone at the moment as far as I know - I think that's why I'm terrified of them saying 'no, he's fine' and just sending us away. Because if they do that, we will be completely on our own, with no support.

I know it sounds like I'm convinced that Ryan has Aspergers Syndrome, and that's probably not a good thing really, but he is SO like all the descriptions of Aspergers children I have read, I will be quite shocked if they tell us there's nothing wrong with him.

As well as the social difficulties, the obsessiveness, the taking-things-literally-ness, he also has symptoms that I wasn't aware were part of the condition, such as bedwetting, crying without tears, over-reacting to very low level pain (ie if someone gives him a hug that's a bit too tight, he will cry out as though he's in agony). But whether he is severe enough to qualify for a 'label', I'm not sure.

Oh well, we will know soon...

quietheart

I think the fact that my son has a history of problems, late speaking, selective mutism, anxiety, bowel problems, toe-walking it made him easier to diagnose but as I said he's far from classic asperger's, I didn't think he did have it, having talking it through with the expert I now know he has.
Couldn't you ask your GP to refer him to a Comm.Paed who oversees his care as I'd imagine other organisations would be involved after diagnosis. Occupational Therapy can help with the over-sensitivies he seems to have, you'd want SLT involved and possibly CAMHS. If that's your son in your avatar he has the most beautiful thoughtful face. What a sweety!

Snaggles

Yes, I will see what happens with the diagnosis, and see what support we are offered, but if we don't get any, I will go back to the GP and push for more help. I think that without extra support at school, I may have to take him out and home school him at some point in the future (I just don't think he will cope with mainstream education for much longer without help), which would probably have a negative impact on his social skills, so it would be a last resort really.

Yes, that's him in my avatar - he's my gorgeous cheeky little monkey.

Toe-walking is one thing Ryan doesn't do actually, although funnily enough my husband does!