Columns

This was our second summer without Camp Communicate. Our daughter Abby, who has Rett syndrome and is nonverbal, never really got the full benefit out of the camp, which sought to encourage nonverbal kids to use their communication devices. But the absence of the camp has left a…

I confess that I am a T-shirt hoarder. I have dozens, many of them embarrassingly old. How bad is my habit? I am in my Social Security years, and I still have a T-shirt from my high school fraternity. And yes, it still fits, kinda. Occasionally I make an effort…

If, like me, you have a child with Rett syndrome and an older, neurotypical child, it’s easy to fall into the “she’ll never” cauldron of gloom.  “She’ll never get two MVP awards in high school softball like her older sister.”  “She’ll never earn three college degrees like…

Having a child with special needs can sometimes feel like you are constantly dodging punches in a boxing ring. Yet you can’t throw any punches yourself; you’re just playing defense and trying to protect your child from the next challenge. Rett syndrome slowly robs a child of abilities many…

The area where I live in central New Jersey seems as if it’s becoming the warehouse capital of the country. For a decade or two, warehouses have been springing up like dandelions, some with recognizable names like Amazon on their signage, others offering no clue to passersby as to who…

Last in a series. Read parts one and two. When our daughter Abby, who has Rett syndrome, went into a Delaware hospital 17 years ago for spinal fusion surgery to correct severe scoliosis, she had an allergic reaction to something partway into the operation. The…

Second in a series. Read part one. Seventeen years ago right about now, my wife, Donna, and I sat dazed in a Delaware hospital as a surgeon explained that he had been forced to abort the spinal fusion he was performing on our daughter Abby because she’d gone into…

First in a series. These days in our household, we refer to August 2009 as “the worst summer vacation ever.” It’s a grim sort of joke. There was no vacation that August. There was an operation that was supposed to keep our daughter, Abby, who has Rett syndrome, in…

Registration. Physical. Supplies. Even though there is still over a month left of summer, I’m already preparing for the start of a new school year. I’m not only getting myself ready, but also my daughter and my students. My daughter, Ryan, has her sports physical completed by mid-July so there…

At the International Rett Syndrome Foundation’s conference earlier this month in Minnesota, there was a “Caregiver Retreat Center,” a quiet room away from the main conference activities where parents and other caregivers could go to chill. The conference sessions were information-heavy and sometimes emotional, and this side room offered a…