starting with GDD and/or movement disorder and then to autism?

[MommyUpNorth]

I had a paed appointment yesterday to discuss everything to date with ds (16 months). So far the diagnosis has been movement disorder, then cerebral palsy, then just hypotonia with other issues, then a definate GDD & microcephaly... While this is just so much fun playing guess what ds might have, it's getting fairly frustrating as I'm starting to think that they don't actually know what they're talking about anymore.

At yesterday's appointment (ds observed at home for nearly 2 hours), she mentioned autism being on the cards (and has mentioned this at every appointment since he was about 5/6 months old). If that is what it's going to be, then it will be... but my question is has anyone's child started off their clinic route with movement issues being the main issue, and then it's gone away from that onto a social/language disorder primarily?

The lack of social skills and communication has always been there, but the movement issues were more noticable as the main 'symptom' hence the earlier thoughts to movement disorders. He also is now attending a CE school 3 times a year, and though they admit that his primary issue is not movement, they thought they could help.

I'm starting to get a little fed up as I don't know what to read up on anymore, and the professionals don't seem to really know what to suggest. Or is this how life in SN world is really, and I just need to adjust... which I'm guessing is the most likely answer!

Sorry for the ramble, but any thoughts on anything would be much appreciated.

Ok emailed you mine. I can't open yours (Mac). I should be able to open the MPG file though..... I can open AVI really easily if you can send that.

Hang on have found a DivX player for Mac....

IN case I've crashed your inbox (just realised movie was rather large..... sorry!)

The socks thing is a little different, but the stuff with the pom poms is EXACTLY what ds1 used to do. If he heard music that he really liked, he'd do that, or if we fanned him with something for example. I've always felt those are linked to over-stimulation/excitement.

They progressed onto the ones I've sent you a video of. They are sometimes linked to excited- either over OR under weirdly enough. But can get in the way of him functioning, and may just happen randomly. I don't think it's voluntary.

We should be seeing the paed soon. She was confused about waht was going on last year, and I think if I bring video will want to show it to others (which is fine). I'll try to get some really good video and see what she thinks....

yurt, I can't get the file you sent to work here... have sent you an email with the error message.

Did your paed (or any other therapist) have any thoughts at all on the movements like in the pom pom video? Ds did this during a meeting today while he was just looking around a boring room (he was also licking a mirror in a book for about 30 minutes!). I have no idea why they come about sometimes, but they almost always happen when he's excited.

Davros, that's how I would describe ds's movements - strange. He frequently just looks very odd in whatever he is doing. Unfortunately for me, I've got very used to him now and a lot of the things our therapists find the most odd, I have long forgotten about as they're just a part of him now.

I am not sure what we have been told now is right on most fronts!

We were given the SWAN brochure from the CDT, and I got some info from them, but from the reading I've done there it seems a lot of the children have a lot more severe problems than DS2 does.

They thought he was doing funny movements back in December when he was doing this wiggly squiggly movement on his back. It was how he got around though, and for a long time there were concerns about his hearing and vision , so maybe it was how he found out about himself, and his environment. He can crawl now and cruise so he is doing it less.

The SHO endo at GOS thought he was dyskinetic when she put him on his feet and he wasn't at all steady, but I think it's because his head and torso control at that time still weren't up to him supporting himself how he was being held.

If he wants something he can get himself to it by crawling, he can reach, and he can hold things. His fine motor skills are still not great though but he is getting better (we have been working more on his gross motor skills).

We are worried about his lack of speech most at the moment....

BIBIC was great at the time - the program they gave us emphasised sensory input (flashing lights, rubbing his body with different textures) and it did help, and he is now really ticklish for instance, but I think he is past their program now - were supposed to see them in March but he was at GOS for some tests, so we have an appt in July.

All the best,