Our family’s trip down the path to diagnosis began when Matt was just 9 months old. It was then that he started having terrible night terrors. They would last as long as an hour and carried on for six months that way. We spoke to the pediatrician and the “its normal, he’ll grow out of it response.”
About the time the night terrors ended my sweet little toddler of 15 months began throwing raging fits for seemingly nothing. He would find the first hard thing (floor, wall, coffee table) and bang his head on it until he would bruise and bleed. Trying to intercede in the fits only made the rage worse. We spoke to the pediatrician again and walked out of the office with a toddler discipline handout.
The fits continued on and that age of two, while I was pregnant with Ema, I had to make the decision to not take him out anywhere, without Adam coming along as I could no longer restrain him and try to calm him when he had a meltdown because he would kick me so violently. It was at this same time that it became apparent that he wasn't just going to “grow out of this” nor was he just “a little slow.” Not to mention the fact that his vocabulary only consisted of 20 words that were difficult for anyone other than me to decipher.
Finally, at the age of three (a few months before his fourth birthday,) after being unable to control his rage against his sister, a pediatrician actually got to witness one of Matt's meltdowns and sent us for a meeting/evaluation with a psychologist at Shands in Gainesville. The end result of the two-hour trip was the doctor speaking to us for 30 minutes, Matt for about 10 minutes and watching him play for about 15 minutes. We left that day with a diagnosis of Oppositional Defiance Disorder (ODD) and not a word was spoken to us about his language delays.
I left that day feeling lost and let down.
I knew this was not the answer for our son. I called around to other offices to be told that they would not evaluate our sweet boy until he was, at least, five. At the age of five, we found a new Ped. who conducted a preliminary evaluation, and said that he believed Matt was on the Autism spectrum with ADHD tendencies. He wanted Matt in for a full assessment but warned that he had recently had patients with our insurance dropped after receiving a diagnosis. Unable to lose coverage, we made the decision to keep working with him at home and come back for a diagnosis at a later date.
Now, we are here, in the present and traveling down the diagnosis path yet again. After unsuccessfully locating an evaluator or teacher to complete his homeschool review for this year, I called to make an appointment with a psychologist. I needed an evaluation from him to send into the district instead. Upon our meeting, the psychologist decided that he would not be able to perform the evaluation for us based on Matt's reactions that day. He suggested we instead make an appointment with a neurologist for a full workup.
So I sat stranded this past week, in a panic, fearful of what would happen. I have no evaluation to turn into the district and have exhausted all of my options. That is when our family made the difficult choice that we must send in our letter of termination to the district for our homeschool program. After a visit to the local health department to pick up waiver forms for a health exam and immunizations, Matt and Ema will be officially enrolled in a state umbrella school. While not my first choice, we are still allowed the freedom to educate our child that the world has seemed to push to the wayside at home while not being held to the laws requiring an evaluation at the end of the year.
It is my sincere hope that our next trip down the diagnosis path at the neurologist will be our final trip, lead to the closure, and help that son has long been denied.