Spare Me The Tulips: Fragile X Syndrome, A New Drug Trial, and A Few Reflections

It’s hard work being a parent. In a family like mine that values intellectual pursuits, I think it’s that much harder when your child has cognitive deficits. I confess that even now, 24 years after my son’s birth and 22 years after his diagnosis of Fragile X Syndrome, I still, on occasion, find myself indulging in fantasies that my son is magically rendered neuro-typical like his three siblings.  I know that’s not very “woke” of …

Special Education Parents, Know Your Rights! (Part 2)

Last week I published a post called “Ten Lies That Parents Of Special Needs Kids Often Hear: Know Your Rights!” and suggested that we in the special needs community share information to better advocate for our children. During the past week I’ve received many questions and comments from parents who are doing their best to navigate what can be an overwhelming thicket of regulations and red tape as they struggle to secure necessary services for …

For Parents Advocating for a Child with Disabilities, Here’s the Golden Rule: If You Don’t Ask for It, You Won’t Get It!

I have a new piece out in New Jersey Family Magazine on advocating for your child with special needs. It starts here: My husband and I welcomed our son into the world with the calm conviction of experienced parents. Jonah was our fourth child, and we were pros at child rearing, fluent in the language of raising kids. Feeding schedule? Check. Separation anxiety? Check. Toilet training? Check. Education? Check. But Jonah isn’t typical. When he …

“If You’re Not a White Boy, You’re Less Likely to Be Diagnosed with Autism”

The National Autism Coordinator of the U.S. Department of Health and Human Services recently submitted  a report to Congress called  “Young Adults and Transitioning Youth with Autism Spectrum Disorder.” You can wade through the whole thing here but the conclusions will come as no surprise to parents with children and young adults on the autism spectrum: our country’s system for providing support is inadequate, inequitable, fragmented, confusing, and in “acute need” of reform. Any parent …