My son, Jared, received his autism diagnosis just over two-and-a-half years ago. It was the week before he started kindergarten, and although my husband and I were expecting the diagnosis, it still brought a great deal of emotion into our lives—and many new things. In that first year, we learned a whole new language, terms like “medical classification” and “educational classification,” “DSM IV” and “DSM V,” “individualized education program,” “vestibular stimulation,” “echolalia,” and “auditory processing disorder.”
We were fortunate to be able to participate in a parent education program at our son’s school. The meetings were a great source of support for me personally and taught both of us a great deal about how Jared functions in school and in the world. The parents in that group also introduced us to various services and programs we were not aware of—and for that, I’m grateful!
The following year, I began to get more involved in parent groups. I went primarily to meet other parents of children with ASD (autism spectrum disorder) but found myself asking questions. I wanted to understand the system of services that was helping Jared make great progress—and why similar results weren’t being produced for everyone.
Through some additional committees and workshops, I learned another new language, a soup of acronyms and initials: DAP, IDEA, MRB, PAC, DDDS, CDS, PIC, and the list goes on and on. And I found myself reading publications like the Blueprint for Collective Action and Delaware’s Administrative Code. Plus, I met even more amazing people: more parents, teachers, and therapists; district and state personnel; and leaders in the autism field.
I’ve had the pleasure of meeting Marie-Anne Aghazadian and Marcy Kempner, who helped create the Parent Information Center of Delaware and Autism Delaware, respectively. These agencies support my son—and Aghazadian and Kempner are still advocating and mentoring parents like me. I’m grateful for everything they have done as well as others who have laid the groundwork and continue to push improvements for programs, such as the Delaware Autism Program (DAP).
The educational system currently addressing the needs of Delaware’s kids on the spectrum was developed when fewer than 50 children in the state were diagnosed with ASD. More than 1,200 kids with ASD attend Delaware’s public schools today. As a result, the system struggles to keep up, and kids are “falling through the cracks.”
There are no easy solutions, but we can do better—and our kids deserve nothing less. It’s time to let our collective voices be heard—at the state level and in our local school districts. Let’s build on the groundswell of momentum now that education is in the media so much: Go to a local PTA meeting, or join the autism task force. Meet other parents at Autism Delaware’s parent coffee hours. Educate yourself on autism issues, and start by visiting autismdelaware.org. Most importantly, add your voice to the conversation. Everyone is needed if our children are to get the education they need to live as independently as possible.
Sun contributor Dawn Maloney is the parent of a son on the autism spectrum.
This text was edited for consistency of language and message and appears in the January–March 2015 issue of the Autism Delaware™ quarterly newsletter, The Sun.