Thursday night I had the privilege of speaking to a group of parents at the Chesapeake Bay Academy, a special needs/learning challenges school in Virginia Beach. I was invited there to talk about our book. I thought long and hard about what I should say to these parents. I didn’t want it to be a book infomercial. I also didn’t want to read a lot, since listening to someone read is kind of boring. But I wanted to convey the main message of the book: as the parent of a child with an “invisible” special need, you are not alone.
So I decided to tell my story. Of course, my story as the parent of a 9-year-old with FASD is unique to my family, but so much of what we’ve gone through other people have gone through, too. The structure of the book: first glimpses, searches for treatment, problems with school, impact on family/friends/village and family/friends/village’s impact on us, and acceptance leading to a possibly uncertain, but hopefully hopeful, future, is basically the story of us, with the future part to be determined as life goes on.
One thing that came up as I wrote out my presentation, and which became even more solid once I started to speak, is that this idea, the idea that I AM NOT ALONE has not always been with me.
There was a time, specifically when my son was in 1st grade, when I felt very alone. Here’s why:
- His differences were becoming more and more apparent. And more and more serious.
- My husband and I felt unmoored. We had no idea how to help him.
- Our home life was stressful, unpleasant, and characterized by daily meltdowns, frustrations, tantruming, and destruction.
- The professionals we were working with (psychiatric provider, therapist, family practice doctor, educational psychologist) seemed to have no idea how to help him.
- My son’s school denied our request for an I.E.P. ignoring all information we gave them (including documentation of months of behavior problems, my child’s inability to do any homework, IQ tests, and independent evaluations), and basing their conclusions on a couple hour-long observations of my child done while my child knew he was being evaluated, and a teacher who did not complete paperwork throughout the year and so apparently LIED to the I.E.P. committee in an attempt to cover his ass.
- I felt like all I said to my friends was how shitty our lives were. I felt like they didn’t want to hear it.
- I worried about burdening my family by asking them to take care of our son, so quit asking.
And then…Kay Marner and I came up with the idea for the book. I claim Kay thought it up, but she says I thought of it, so maybe it was spontaneous. Anyway, it doesn’t matter. In any case, we came up with a book that would have essays about parents and their struggle. Not a how-to book, or a book by experts, but a book by parents in the same boats as we were.
And then…the essays started coming in. And I saw myself! And we started the blog for the book. And I saw myself! And we started the Facebook page! AND I SAW MYSELF.
And we finally found a psychiatric practice that seemed to get it, and we started to find a way to help our son, and we left that crappy teacher and that crappy school behind, and my friends and I started talking again (and it turns out they do love me and care about me and want to hear what I have to say), and I said screw it, I’m asking my mom for help because we must have some respite around here…and she did.
And so we thought it and it became true: we are not alone! Now, more than ever! Because from that struggle came a diagnosis that finally makes sense for my boy: FASD. And experiencing a crappy school and a crappy teacher and enduring homeschooling we finally found a school we love, where they get HIM and they get ME. And we have professionals in our lives who listen to us, who say things like “You know him best,” and “what do you think is the best thing for him?” Instead of giving us stupid advice suggesting things we’ve already tried (like be consistent, or use a sticker chart, or cut back on TV. As if we hadn’t already tried those things.).
And so on Thursday, when I gave my talk, I shared all of these things. And when I looked around that room, full of parents JUST LIKE ME, who have tried everything to help their ETL children, and who knew exactly what I was talking about, I knew without a doubt that the message of the book is 100% true: WE ARE NOT ALONE.