It all started by John not being able to see the stage for the adults in his line of vision. Understandable. So, he stood up in the aisle. I kept pulling him back to sit back down....but he'd keep fighting to see. I finally let him stand in the aisle so that he could see the Macaws fly overhead. He started jumping up and down with the widest eyes and the biggest smile! Yea, I was an AWESOME MOM at that very moment in time! Then, I started watching him closer. He started flapping his arms around and rocking back and forth a lot. Interesting. I have never noticed this behavior being so pronounced before. However, I have never had John in a social situation like that before! There were at least 100 children at the front of the gym/cafeteria in a very bad acoustic situation. John most likely has auditory processing disorder and sensory integration disorder based on observations from me and a school psychologist (not a confirmed dx yet). When the lights came on to see the Macaws flying, John flipped out and started yelling to turn the lights back off! He stopped once he saw the birds, though. The show took an intermission to take snake photos with the kids. The lights being on and the strong amount of talking and excitement in that small room was suddenly TOO MUCH FOR JOHN TO TAKE! He demanded to go home! He was still flapping his arms around. John simply can't handle a lot of stimuli in his environment.
John can't handle taking a bath. The water tickles. Bubbles tickle. Brushing his teeth tickles! Yet, the pediatric neurologist does not want to confirm any dx with him. All I get is globally developmentally delayed.
I also get a LOT of stares and folks openly whispering to each other when John starts his disruptive behavior of arm flapping and yelling with excitement. Let me tell you this: I ♥ that my son is so incredibly excited about life! You will rarely see me asking him to conform to society's rules. He's a child - he is loud - he is full of creativity and fun! Get over it!
I have been telling his pediatrician since he was 18 months old that something was going on with John. He suddenly lost his words! Yes, for those interested, he HAD just had his MMR shot. Now, this never happened with Jacob and he's 15 months younger! Interesting, huh? For a while, I had thought that John had simply regressed due to his brother being born. John's speech was not improving by age 2. I told the pediatrician AGAIN. I got, "Wait until it's a problem." Yea, I called my insurance companies and gained authorization to venture out on my own and obtain speech therapy for him. They found that he was more than 25% delayed. After paying $700 out of pocket for the dx and speech therapies, they finally told me about Early Intervention Services (our county has one). They came out to the house to dx him. He qualified for FREE services (regardless of insurance or inability to pay). The speech therapist came in and saw a need for an occupational therapist and then a special instructor. It was then determined that John should develop social skills through the county's preschool for children w/special needs. John has attended this preschool since Feb 2010. EVERY year, the pediatrician has been given progress notes from all therapists and any given diagnosis. Yet, nothing is every said or done. I then met with my pediatric neurologist in June 2010. He had moderate receptive/expressive speech delay, mild visual/motor delay and disruptive behavior disorder.
In Feb 2012, I had John's 5th pediatric visit for annual visit/shots. It was at this very moment that he OBSERVED John and mentioned that perhaps he was autistic. He noticed his repetitive mannerisms and finally listened about John's selective diet of "white foods" or starches. However, he wants to FIRST WAIT until John has been in elementary school to decide. Here's the fun part: John will need an IEP in order to be successful or have a fighting chance in elementary school! Our local school system has an autistic class, but without this dx.......John won't receive those services. So, John had a follow-up appointment with the pediatric neurologist.....who changed his dx to moderate receptive/expressive speech delay, disruptive behavior disorder and NOW....globally developmentally delayed. He tested him to be on a level of 3 years and 7 months at age 5. Globally developmentally delayed is a cop-out and worthless dx. It will NOT entitle your child to receive an IEP or specially designed instruction. There are 13 categories that will. That is not one of them. Speech delays will. Learning disabilities will. The school psychologist examined John and found auditory processing disorder and a strong disconnect in the verbal/non-verbal skills. John's IEP now includes Learning Disability and Speech delay. I'm actually waiting for emotional support classes for his disruptive behavior. Like I mentioned, I've been in the schools. I've sub'd for several classes - including special education. However, it's MUCH different when YOU are the parent! When it's YOU fighting for your child in the public school system, you will be tempted to give in and just homeschool. I'm not giving up. I've got an ADOS test set up for John in June. He will continue his special education preschool over the Summer.
I feel that, as a parent, I have gone above and beyond trying to find the appropriate services for John. He is now working with a feeding clinic for his white foods diet. Just think........if I had listened to our pediatrician...........Wait til it's a problem...........would John be functional at all?!?
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