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Thread: Lurker with questions on Asperger's. VERY long

  1. #11
    Suzi is offline INCIIDer - A Community Creator
    Join Date
    Jan 2006

    Default and if you can drop and run...

    Quote Originally Posted by jeninnc
    Ahh good. Wake County is the place to be for ASD.

    I would start with Dr. Milowic at Raleigh neurology. She's the best developmental ped. around. She's got a waiting list, but it's totally worth the wait to see her if you have any suspicions that something isn't right.

    Call the CDSA - Raleigh. This is our EI program. You can request an evaluation. Wake County's autism screening team is very good. They were trained by and use the same priciples that teacch does.

    Teacch is run by UNC. It is recognized as being one of the formost autism treatment programs in the world. People move here all the time just for the services. Because of that, the wait list is long, but worth it as well. You would need to call the regional office - located in Garner. You will speak to Tia and she can give you all the info. It's helpful to have your doctor do a referral as well.

    You can do the developmental screening at the peds but I would call at least Dr. Milowic today if you can. The pediatrician will probably just refer you on anyway.

    I can recommend a FABULOUS OT if you have more questions about the sensory stuff and want to pursue that route. Get a copy of the Out of synch child. It addresses a lot of the things you mentioned.

    at a moment's notice, ask for them to put you on their cancellation list. I agree that most peditricians are too general if you really have big concerns. I'd move on to someone more qualified. GL!! and keep us all informed of your progress.

  2. #12
    Christine S Guest


    Hi Collette,

    Some of this sounds similar to my ds at that age. As a matter of fact, just this weekend I realized that I do NOT just say *no* to him still. I always beat around the bush (saying NO, but not directly). It was a survival skill back then.

    We did not have the gluten issues, but we did have moderate reflux. No sleeping. HUGE meltdowns (only those of us who have dealt with them can understand what I'm referring to...not *tantrums* but total meltdowns) that would last for hours - nonstop. Obsessions. I had to giggle at your ds taking things apart (that was ME as a child) and loosening door hinges. I kept finding switchplate covers and doorknobs loose all around our house. Ds finally fessed up to it. Anyhow, there is really quite a bit of what you posted that we have experienced as well.

    We have gone through a bit of testing and at one point did suspect autism or asperger's, but those were ruled out. What do have at this point (6yo) is a dx of sensory issues and ADHD. There may also be some processing issues, but we haven't gotten a full eval for that just yet.

    For Tobin, the only way I can describe how things were was to say it was like all his *issues* were tied up in knots and layered. We had to untie the first knot, unwrap those issues and deal with them before getting to the next layer of knots. We started with traditional OT, but had little to no results with it. Then we did 1.5 years of a very non-traditional Cranio Sacral Therapy. That alone seemed to loosen up those *knots* so we could start to see what was going on. We stopped the CST because it was an hour drive each direction and I just couldn't do another winter season driving the roads around here. Tobin also suddenly asked to stop (and he loved his OT) so we did. He did much better for a while, but we have now started up traditional OT again with a different therapist and after only 2 weeks we see results. Dh & I both agree it was just *time* and he was ready.

    For the sleep issues we turned to melatonin. I'd check with your doc on it first, but it was a lifesaver for us. The sleep came in waves and the NON-sleep came in waves. So we were able to use the melatonin during those periods he could not sleep and then wean off when he was back on track.

    Since your ds has so much going on right now I'd want to get as full of an eval as possible. That might mean going to more than one source, depending on what recourses you have available. It's a long process and you may not get answers immediately.

    Wish I could be of more help, but I think you need to get more information first. Please post more if you have questions or just need some support.


  3. #13
    trek is offline INCIIDer - A Community Creator
    Join Date
    Sep 2006


    Keep us updated

  4. #14
    Join Date
    Jan 2006


    Thanks Christine,
    I have been following you and Tobin for years. :o) If I remember correctly you moved from Bakersfield to CO???
    Anyway, I had to laugh at Mason the day after I posted. He ate hash for breakfast then had almost a whole pizza for lunch then ate Mac & Cheese for dinner.
    He wanted the music louder(a music cd came with Jungle Book). He was happy.
    I am now wondering how much sleep has to do with all this. I tried the melatonin with dd and it really didn't help. I did give him some Mon night but I also gave him to Atarax. But he did sleep better. Tonight he got nothing so we will see.
    But today he ate nothing. We're out of hash, on purpose, so he wanted a hot dog for breakfast, he ate maybe 5 bites and I cut them small. He ate nothing for lunch but then wanted mac & cheese and he ate maybe 3 bites. Nothing for dinner but a few french fries. Crappy food but trying to make it kid friendly right now.
    We still had a few tantrums but nothing major. And only had to watch Island Princess twice. BUt he only sat through part of one. It seems like it has to be playing in the background. At least I could get the house clean and laundry done and put away. My family room has looked like a laundry mat since Sun. and I had major dog hair on my floors. LOL
    Hopefully he sleeps better because we have several days of much needed rain coming. And he prefers to play outside taking the cars apart.
    Thanks again and I'll try to post more often.


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