I started watching The X-Files when my first child was born in 1994. I would often watch an entire episode with Nigel sleeping on my shoulder, gently rocking him as I waited for his father to get home from work at night. The show’s then-unconventional subject matter of two FBI agents investigating strange crimes and bizarre phenomena appealed to me, and I continued to watch it until it ended in 2002.
Meanwhile, in 1997, I started keeping my own files. That was the year that we began having Nigel evaluated for his lack of language development, among other concerns. We went through numerous tests, home visits, and various assessments over a six-week diagnostic period. And then we were told what the therapists probably knew much earlier: it was autism. Our first IFSP meeting was scheduled, early intervention services began, and my files grew. Six months later, I discovered the website for the Autism Society of America and was relieved that I now had some information that I could print out for relatives and friends to read – basic information about autism that had been so hard to find twelve years ago. I made copies and put them in the file.
A year or so later, we began to realize that our younger son also exhibited signs of autism – a disheartening language delay and prominent sensory issues. So he was also evaluated, and, although not diagnosed with autism, he still needed speech and occupational therapy. I started a file for him, too.
The years went on, and two kids with IEPs produce tons of paperwork. I saved most of it, wanting to have everything documented, trying to be a responsible special needs parent, and just not sure what needed to be saved and what didn’t. In addition to the boys’ individual files, I also kept files on general autism information as well as related special needs advocacy information. The files were both full of articles I’d pulled from magazines and newspapers over the years, old clippings from genetic theories to the vaccine issue to stuff I’d found on terbutaline and other neurotoxins. I clipped sidebars on teaching strategies, visual schedules, and sensory issues. There were reprints from early Newsweek and Time magazine cover stories on autism. I saved articles on biomedical treatments, various types of therapy, autism in adulthood, and special needs estate planning. My files covered a lot of ground.
And last weekend, having the need to downsize to a smaller filing cabinet, I decided it was time to clean out what I’d dubbed “The A-Files.” I tackled my younger son’s file first, smaller due to the fact that he had no longer needed an IEP by the time he turned ten (three years ago). I saved a few of the more important IEP copies and his early evaluations. Then I moved on to my firstborn, whose file had actually torn at the top from the weight of it, and been taped. His, of course, took much longer to wade through, but I think I did a good job of judiciously separating the grain from the chaff. It felt odd to go back so far, to see things that I’d written – behavioral observations, for example – eight, ten, and twelve years ago. I was struck by how little I understood of autism then, but also by how determined I was to help my son.
By the time I got to the last file, the general autism file, I didn’t realize how fragile I was. I had breezed through my younger son’s file, and although I had lingered considerably longer on my older son’s file, I felt like I did all right with it. I thought that I’d kept my emotions at bay. But I had barely begun to sort through that last file when my face suddenly twisted into a grimace of pain and sorrow. A hideous sob racked my chest. The gig was up.
I know what it was that finally got to me. It was the printed evidence that autism has shaped our lives. Maybe I subconsciously thought that all this paperwork would somehow help. That saving it was like some sort of a karmic point system, that it would make a difference, sitting in my filing cabinet. All that documentation, all that information. Evidence. Unresolved, just sitting there. Like that show I used to watch.
But then the sobs subsided as quickly as they’d begun. I realized that autism shaping our lives isn’t just about the negative. Yes, it’s often been very hard. There are plenty of things that I wish could have been different. But in those files are also many positive reports of progress – the gradual meeting of goals that seemed too lofty when written, emerging skills, developing ability. That, too, is evidence. Evidence of determination, commitment, and hope.
You can bet I’m saving that paperwork.
Tanya writes TeenAutism.
While my files are generally in some sort of vague order (eg. I can usually find things within 2 days of looking for them), I really hope that one day I'm going to have the get up and go to organize them. With 3 kids on the spectrum and one child in care, the sheer amount of paperwork from the last 14 years is just overwhelming. And it is a depressing read- not because our lives are depressing, but because so many of the reports/IEPs etc. are so overwhelmingly negative. It's been a very refreshing change in the last few years to have seen the switch to school reports/therapists/doctor's notes beginning with each child's strengths, instead of only things that we needed to work on.ReplyDelete
Thanks for the SAS link- it looks interesting!
" Maybe I subconsciously thought that all this paperwork would somehow help. That saving it was like some sort of a karmic point system, that it would make a difference, sitting in my filing cabinet. All that documentation, all that information. Evidence."ReplyDelete
Oh, how I get it.
Sometimes we just need to cry...let it all out and then regain control and move forward. Good for you for getting yourseld organised.ReplyDelete
I have a HUGe 3-ringer binder for all of Son's evaluations and IEPs. There are times when I wonder how much of all that do I really need. I have to say that Autism has helped me as a parent. Along with learninghow to be/get the best for Son, I have learned pareting skills. Some parents wish their kids cam with an instruction manual. Mine didn't come with a manual but I have been able to read excerpts from it occasionally.ReplyDelete
I know. I have a three-ring binder for each boy for each year, Going on 6 years for Foster, 4 years for Reilly. Yes. I know what you mean. The evidence, the inability to do much with it. Then wondering what the point is, will be. Yes, I know.ReplyDelete
Great great awesome fabulous post!!! xoxoxReplyDelete
oh yes, the A files. how i know. when i'm ready to look back, i'll remember to find the hope. thank you, tanya.ReplyDelete