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Hi girls! I'm Deb, 35. DH is Mike, also 35, and our special one is Matthew. Matthew is just over 2 years old, and he's full of 2 year old-ness right now. Very independant, very vocal, and very ... angry.
Matthew started life as a tiny little guy - 5lbs6oz @ birth - but he was full term. Shortly after birth, we realized he had torticollis and started PT. His therapist was great, and after about 2 visits took me aside and explained to me that there was a lot going on with Matthew besides the Tort and I needed to talk to his pediatrician and schedule an appointment with a nuero ASAP. She tried very hard not to scare me, but you know how that goes...
Anyway, several months, several appointments and tests later, Matthew was DX'ed with Spastic Hemiplegia - CP affecting his right side. Why they called is spastic I'm not sure, because he has very low muscle tone (or did) but that's what they called it.
We've been in PT off and on, OT continuously since he was 5 months, and I've just spoken to his EI caseworker this week about getting an ICDS referral. (Integrated Child Development Specialist) We really really think that Matthew may either be highly functioning autistic, or Asperger's Syndrome. His physical development is exactly where it should be for the most part, with some small deficincies in his fine motor skills. His congitive development is at or in some cases well above age level. His social skills....not so much. He's very immature, very attached to mama and daddy in a way kids his age shouldn't be anymore, he has temper tantrums that are almost like seizures for lack of a better way to describe them. He totally loses himself in the tantrum and even though I know it's not going to happen, it's getting to the point that I'm afraid I'm not going to get him back one day.
We've also got various sensory issues - food, sounds, textures, all of them get to him in one form or another sometimes. He's still very soothed by compression, he mouths unfamiliar objects, he has almost no sense of pain. He is still mostly on a jarred baby food diet, but we've moved up to the point that he'll eat at least half a dozen bites of adult food at each meal, which is huge progress for us. His eating situation is something a lot of people don't understand, even people that I've explained it to over and over and thought they understood.
Thank goodness his therapist was on top of things. It sounds like you've been on top of all his struggles and have worked very hard to get him where he is. Have you tried a play group to socialize him?
Interesting that you mention almost no sensation of Pain. Kyle is the same way - only recently has he started responding to pain.
I'll be looking forward to reading what the drs have to say about the tantrums. Ian has sensory problems (not severe), but this is an area that is very difficult for us - they seem 100 times worse outside of the home/outside of his comfort zone. My friend's daughter is similar in that regard and was recently dx with mild sensory integration disorder (she's 5).
Matthew was actually dx'ed with SID also Kitty, but his is fairly mild compared to some kids and I just wasn't willing to put him through the brushing therapy they wanted to do. It sounded so awful for something that was relatively mild. And he's made HUGE progress as far as things that frighten him. He'll actually play in the dirt now, he no longer has a total nuclear (or nucular ) meltdown everytime I turn on the vacuum cleaner or the sewing machine or the mixer, and he will touch some things that he wouldn't touch before. He's still scared to death of flowers though.
The tantrums are what's getting so much worse. What's even more disturbing to me is that I found a way this evening to bring him out of a tantrum - by rubbing my hair in his face. While I'm delighted that I could do something to break the cycle, I'm not exactly thrilled that my little sensory kiddo is so quick to respond to yet another tactile sensation. *sigh* Sometimes it seems like one step forward, two steps back.
Dittzy - He has gone to a play group before, and he does pretty darn well with it actually! He's kind of a pushover, he just lets kids take stuff from him without a fight, but it doesn't seem to bother him either - he just goes off and finds something else to play with. As far as interactions with other people and other kids, he does great! It's more eating/sleeping/finding appropriate ways to handle emotions that he has a problem with.