advice?

Avatar for wrgrossman
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Registered: 03-31-2003
advice?
4
Wed, 10-01-2008 - 9:09am

Hello all. I just lurk here, but I really need some advice, and for lack of knowing where else to go I have come to you.

Here is the issue, my 6 year old son David is weird. His teacher and I call it "Davidish" because there really isn't any other way to describe it.

Backround: David was born about 5 weeks premature. This was induced, the Dr.s kept him in as long as they could. Point being it was planned, the doctors were well prepared for his issues due to the prematurity. Unfortunately they weren't nearly as prepared for his other problems. He was in the hospital for 3 months. He had a central line for 3 months after we took him home. He received an experimental medication as a last resort. That experiment saved his life. It also caused some nerve damage, and because of his rough start and having a central line when he should have been rolling over, he has always been a little delayed.

Fast forward to now: David is 6 he will be 7 in March. He is healthy. He started pre-k on schedule at 4yrs. old, despite his minor delays. He was not nearly ready at the end of pre-k for kindergarten, so he went to what our school calls "transitional kindergarten". Transitional kindergarten teaches on a kindergarten curriculum at a slower rate in a smaller sized class with more teachers aids as well as more OT and PT in the room. David has a 504 plan that gives him PT 3 times a week. Now to our issue... David is very smart. He scores above average on intelligence and reasoning tests, and at a first or second grade level academically. But he is weird. He is immature, he has no concept of personal space, his social skills are lacking, he is very impulsive, and even seems to have some compulsive tendencies. Our oldest son has ADHD, so David was tested for that. The DR. says he has it and put him on meds. I believe he might have ADHD, but if so that's not all he has. There are things that just don't fit that diagnosis. The meds were terrible, and they didn't last long. He was awake for about 36 hours straight, and we changed to something else. That made him more moody, and his compulsive behavior increased...a lot. We took him off that too and went looking for better answers. This past summer the OT from the school came in and did sensory defensiveness training with us. We had to brush him every 2 hours for a little over a month, and institute a sensory diet. It has helped on some things. David doesn't have to spin around to answer a question in class anymore. He just rocks now which is less disruptive. He doesn't rub his forearms on the edges of the desk constantly anymore. He can go in bare feet now sometimes. He does chew on stuff more, and he still has no concept of personal space, and all the compulsive stuff seems to be amplified. This past week was a really bad week for touching others, and playing rough. I got a call home about hitting for one thing. But academically David is still way ahead, and socially he is still way behind. How long do we continue to hold him back in school because of his social issues? Is he ever going to have a friend? What goes on in his head, and is there a better way to help him, or understand him. I love my son. He has a wonderful imagination, and is very intelligent. I don't want to change that, but there has to be a way to make it easier for him to get along. Where do I turn next? Any suggestions, help? The school seems to be at the end of their suggestions.

 


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Registered: 09-27-2007
In reply to: wrgrossman
Wed, 10-01-2008 - 7:36pm
Hello and welcome to the board.
Jessie Mommy to Gabe (5.8 yrs old ASD, CAS, SPD) and Zane (1.10 yrs old ESD)

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Avatar for wrgrossman
iVillage Member
Registered: 03-31-2003
In reply to: wrgrossman
Thu, 10-02-2008 - 8:23am
Thanks for writing back to me. David has not been tested for ASD. I can't seem to find a doctor who can or will evaluate him. I tried the normal way. Our pediatrician referred us to a neuro-psychologist. When I called to make the appointment, they aren't taking new patients. I got a referral to a different DR. It turns out they specialize in Alzheimer's patients of all things. Not an appropriate Dr. for a 6 yr old. I called early intervention and the developmental clinics that David went to as a little boy. They don't see anyone over 3 yrs. old. I did get some names from them, but all dead ends. I even tried to just forget the insurance and pay out of pocket. Either the Dr's won't do it, or you have to have a referral from a certain place. ugg... Anyway I am still working on that part of it.
He does not get OT. He has physical therapy for large motor skill delays, coordination, and low muscle tone. It is working. The OT goes in to the kindergarten rooms during the day, so the school doesn't feel that David needs to have more than what he gets in class as far as OT. They don't want to take him out of the room more than they have to because David freaks out if his routine is disrupted. I have mixed feelings about this but figure they can put him in OT in first grade when she stops visiting his room. I actually am going to look into the social groups at school thing. This was just suggested to me and I have never heard of such a thing, but it is worth looking into. The school has done what limited testing they can do. I'm still working on that too. Thanks again for your reply!

 


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Avatar for wrgrossman
iVillage Member
Registered: 03-31-2003
In reply to: wrgrossman
Fri, 10-03-2008 - 9:11am
I made an appointment for the end of Oct. with a nuero-psychologist. we'll see how it goes...

 


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iVillage Member
Registered: 09-27-2007
In reply to: wrgrossman
Fri, 10-03-2008 - 8:10pm
I hope you get some answers...please keep us posted....

Jessie mommy to Gabe(3.7 years ASD/CAS/SID)



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Jessie Mommy to Gabe (5.8 yrs old ASD, CAS, SPD) and Zane (1.10 yrs old ESD)

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