Drowning in a sea of paperwork

A sampling of my Michael files.

The pile of papers is barely manageable and represent nearly 10 years of evaluations, progress reports, IEPs (individual education plan) and test results. The papers --  jammed into several folders -- represent the quest we've been on since Michael was in preschool. I revisited the piles this week as I looked for the requested records for his psychiatric evaluation later this summer (I won't even go into how the doctor doing this eval did his two previous evaluations, but doesn't have access to those records because of local healthcare system changes.)

Looking through the records reminded me of the long journey we've been on. Like a dutiful parent, I took Michael to the school district 3-year-old screening and they said he was in the average range. He went to daycare and besides being slow to potty train, no problems were reported. The spring before Michael would have started kindergarten, his daycare/preschool teacher caught me off guard by saying Michael wasn't socially ready for kindergarten and recommended another year of preschool. After much discussion with Joe and officials at different schools -- we visited every Catholic elementary school in our city -- we decided on a half-day, 5-day preK program. Michael seemed to enjoy it, but at pick-up from time to time, the teacher or aide would mention he had problems with directions that day, but overall things were good. At a conference in February, his teacher suggested we have Michael evaluated since he was behind in social skills and motor skills. We got a referral and waited three months before Michael was tested. The doctor looked for ADHD and autism, but found nothing concrete and sent us on our way.

The next fall, kindergarten started and all went relatively well. Then, first grade came and Michael's teacher expressed concern with his reading and writing. We connected with a tutor who ran multiple tests and found he was behind in those areas. She also diagnosed him with dysgraphia, which means the message of how to spell a word gets messed up on the way from his brain to his hand. So Michael can tell you orally how to spell a word, but has problems writing it. Michael started working with her on his reading and made big strides. We received a referral to OT from Michael's pediatrician to help with his writing skills and she tried to help with that. She also diagnosed Michael with poor muscle tone, too. He did six months of therapy -- the max our insurance would allow -- but never saw a lot of change. 

I thought we had it handled and then second grade came and the wheels came off. Michael -- who had always been a chewer -- developed even bigger problems chewing. He would come home with wet sleeves and a collar. Michael also started chewing on his arm. We also noted he was rocking more. At school, his teacher said he would spin a lot, couldn't stand still and had problems paying attention. While he was now doing well academically, it was clear something was wrong. I called to get Michael another evaluation with the psychiatrist. We waited three long months for his testing and evaluation. When the doctor told us Michael had Aspergers or high-functioning autism, it was such a relief. (I suspected that based on my readings and research). But when I asked what happened next, she said, "just work with your school. There's not much we can do to help." 

This is where my heart sunk. I loved our school, but since it was private there were no public school resources available. I emailed our principal -- it was by now summer -- and she said when school started in the fall we would request an evaluation from the local school district to see what services may be available. (What happened with the school district is a very long story for another blog post; let's just say it was a giant cluster and the state needed to get involved.)

The truth is, for someone like Michael who was diagnosed after the critical intervention ages of 2 to 5, services that can make a real impact and change are few and far between. Research has shown that the earlier intervention services begin for children with autism, the better the results. And autism isn't something that goes away or be cured despite what some celebrities allege. That summer -- we also moved into a new house and went on a two-week trip to visit relatives out East -- I devoured everything I could about autism. I knew the road ahead was long, but really had no clue what to expect. Five years later, I still feel the same way: the road ahead is long and I don't know what the future holds.