frustrated and uncertain what to do next
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| Thu, 04-27-2006 - 2:40pm |
I’m just so discouraged and I feel like I’ve run out of drs! Some background. Quintin (6 next month) started having outbursts at preschool when he was 4.5. The school wanted to have a psychologist come and observe. I was so upset that I pulled him. We hadn’t seen any behaviors at home like the school was describing so I figured it was a problem on their end. It was a learn through play preschool. Quintin had just begun to read (on his own and within a month progressed form Hope on Pop to Magic Tree house). We figured he was frustrated and not getting enough stimulation. Also his pretend play was/is pretty complex and his topics of interests were not the norm for other preschoolers.
Well we didn’t see those behaviors until the end of August and then he was having furniture-throwing rages. He was harmful to the house and very threatening to us. He hit kicked but and pulled hair. He would follow us in a rage and attempt to harm us. His words were horrible. This was completely uncharacteristic. These were occurring 2 or 3x a day and lasting up to an hour. I wound up calling the preschool back and was referred to a neuropsych. We did 12-14 hours of testing and the results were short attention span, poor impulse control, eyes not tracking together consistently enough along with poor eye contact, high verbal IQ (160s) and much lower functional IQ. Also that his fine motor and large motor was slightly lagging. She gave us a battery of tests to get done.
He has had an MRI, 2 EEGs, chromosomal testing, an OT evaluation and a speech evaluation. We have seen 2 neurologists. The first was so against home schooling that we didn’t go back to him. He couldn’t see past that. He told us nothing neurological was happening and to put him in public school and his behavior would straighten out. The second neurologist thought that home schooling was the best thing in the world for him because we could make accommodations and cater to his learning style. He wasn’t concerned that Quintin was/is having difficulty with peers and group activities. Somewhere in all this Quintin developed some tics (eye blinking) and he felt that Quintin is a smart kid and often-smart kids have tics.
That brings us to now. Quintin is receiving OT for an hour once a week through Easter Seals. He is to begin speech therapy for an hour once a week starting next month. He has a screening with a developmental ophthalmologist to see if vision therapy could be helpful. He has these seizure type episodes when around too much auditory stimulation. His therapist is mostly working on recognizing his arousal states and motor planning. Speech will work some on pronunciation but also that he has some pragmatic speech issues. I don’t understand the speech eval truthfully.
School is great. He is a self motivated kid who loves history and science and much of what we do reading and grammar wise pertains to that. He has an amazing memory and is able to apply what he ahs learned to various situations. Math is hard for him but he gets it although his recall is slow and I’ve learned to wait patiently. In the past few months his handwriting and fine motor skills overall have improved drastically. He is taking a chemistry class with other kids and although I am in the room he does well, I’m just there more for moral support. He’s also just begun karate and loves it. Some of the moves are hard for him but he is trying and not so wiggly and following directions.
The rages still do happen but maybe once or twice a month and have no rhyme or reason to the cause.
Playmates are hard mostly due to sticky thinking. Quintin shows up and wants to do something specific and has it all planned out in his head and then doesn’t know how to respond if the other child isn’t interested. He is great with a bunch of kids playing a board game or a sport or something imaginary like Star Wars. These things all have rules so they are all on the same page. DH and I do lots of imaginary play with him and don’t always go along and we have been working a lot on making the action figures talk to one another rather than just Quintin narrating.
Just last night Quintin came to me after bed upset because his hands were blinking. He was ticing his hand in and out. I called the pediatrician and they suggested I call his neurologist of who we don’t have.
Our family dr gave him a dx of adhd. I don’t completely agree but the insurance company likes it and is paying for therapies with that do. I feel there is something else going on. We have an appointment to see the head pediatrician next week actually it is 2 appointments long. I’m sick of paying co pays for drs who aren’t helping or paying upfront for the specialists and waiting and hoping to be reimbursed by insurance. Any ideas? Anything I’m missing? My fingers are tired from typing. I’ve left out a lot of behaviors—obsessions, and scripting mostly that aren’t as prevalent now as when he was younger. I just need someone to listen. Thank you. Heather

Bless your heart!