Welcome to Perseveration Nation — a blog devoted to parents of teens with Aspergers. My name is Ellen, and my son, Jack (now in high school) was diagnosed with high-functioning Aspergers in 4th grade. Since that time, we’ve tried numerous interventions–including occupational therapy, processing-speed therapy, speech therapy, social skills therapy, “brain-training” therapy, physical therapy, NAET treatments, Reiki, chiropractic, medications, genetic testing, naturopathy, and more. As any parent of an Aspie knows, you’ll do anything and everything to help your kid. It can get time-consuming and expensive, and many roads we’ve traveled haven’t led to any measurable improvements.
My son just completed his first year in a science and math high school magnet program, and while he certainly has the IQ required for success, his challenges in the areas of executive functioning and self-advocacy have landed him on academic probation. As are many other parents, I’m now in “Power Mode” again. (We go through “Rest” phases, where we aren’t doing much therapy and are primarily relying on the help of my son’s meds), and then we go through what I refer to as “Power Mode”, in which we’re trying new therapies–none of which are ever covered by insurance–and spending lots of time and money on things that may or may not prove helpful.)
I started this blog because I’m worried–worried that my son may not make it through the magnet program (he’d be miserable in a traditional high-school setting), worried that he may not get into/succeed at the college of his choice, and worried about what the future holds for him, especially when my husband and I are no longer around to provide him with the supports he needs. So I’m now back in Power Mode. I’m doing loads of research, starting in on a new round of therapies, and seeking anything and everything to help my son realize his potential and enjoy a life that’s rewarding and personally fulfilling despite his challenges. To help me stay organized and to potentially help other families out there, I am providing a chronicle of our journey and using this blog to record and track my research.
If you’re here and reading this now, you are a “Perseverator”, and I salute you. The minute a child is diagnosed on the Spectrum, his/her parents’ lives begin a massive transition, and the aftermath is all about perseverance and perseveration. As David Mandell pointed out at the 2011 IMFAR Conference, the challenge for parents with kids on the Spectrum is that, unlike for many other conditions, there’s no clear road map for how to optimally proceed. The burden lies with parents to navigate countless therapies, health regimes, medications, doctors, research, camps, programs, insurance battles, school battles, financial questions, and more. So while doctors and therapists can be a huge help, parents still have their work cut out. And given what lies ahead, to say that this requires “perseverance” is a huge understatement. Most of our kids “perseverate” (the American Heritage Medical Dictionary defines this as “Uncontrollable repetition of a particular response”). While I’m using the term loosely, I would argue that as parents of AS kids, we must also perseverate, because we must try again and again and again and again to find ways to help our kids.
I suspect you’re doing your research and looking for any help you can find in the same way that I am –searching the Internet, reading blogs and books and articles and conference notes and more. I wish you luck and would love to hear from you. Thanks for stopping by, and all the best.