It was one of those weeks when the phone rang constantly, and each was a “crises” call. My 24 year old son Matthew, who has autism, was on a bad roll. “Matthew lost his wallet, Matthew is calling a girl obsessively, Matthew called 911 because a girl hung up on him, Matthew needs this, Matthew…
Category Archives: Conditions and Diseases
On not looking too hard into the future, when I’ll be gone
An old college friend called last week; she was coming to town, she had an extra ticket to see Billy Elliot on Saturday, and would I like to come? Y-E-S! My sweet husband watched the kids and I headed into New York. I’d seen the movie, I love dance performances, I figured the Broadway show…
The Neurologist
Every 6 weeks or so, we spend part of our morning with The Neurologist. He notices Jack’s new hat. I notice that he’s lost weight. He asks how J is doing with school. I ask how his girls are doing in high school. We dance the dance. He tells me things I don’t want to…
Autism: Living with the looks
I was at Barnes and Noble the other day and believe that I witnessed an autistic meltdown. A father was in line with his teenage son when the woman in front of them sneezed loudly. The noise took the teenager by surprise, and he covered his ears and yelled “too loud, must leave, too loud”…
That “You think YOUR life is so hard?” feeling
This weekend, I visited a relative who may or may not be my sister, and I pretty much felt like I could smack her. She started it! She started it! (To quote an oft-repeated refrain from childhood.) She kept stressing out. First, she got irritated at her husband because he was in the kitchen preparing…
Birds of a Feather: The Special Needs Lunch & More BlogHer highlights
I left my 2yo medically fragile son for five days…count ’em five days AND nights, to attend BlogHer’10 in New York City. It was business, it was pleasure, it was exhausting…you name it – I felt it. Mostly I felt terribly guilty about going, but given the awesome opportunity I just felt I could not pass it…
When’s the last time you were away from the kids?
I got to attend BlogHer this weekend, and it was absolutely amazing. I got to hang with women I’ve only known online, including fellow 5 Minutes for Special Needs blogger Janis, Jean from Stimeyland and Julia Roberts from Support Special Needs. I went to great sessions. I met a hot New York City fireman, who…
Making the Tough Calls
When does the risk outweigh the benefit? How do you decide if medical treatments for your child are more harm than good? Making the tough calls has never been easy, and apparently the weight of this burden never goes away. I remember my son, 4 months old, critcially ill and crying incessantly. Crying because he…
NEWS FLASH: Raising a child with special needs causes marital strain
According to a study by researchers from the University of Wisconsin-Madison’s Waisman Center, parents of grown children with autism are more likely to divorce than couples with typically developing children, according to new data from a large longitudinal study of families of adolescents and adults with autism. Uh, oh. The study, published in the August…
Oopsie! Forgot to have a life
Last night, at 10:10 p.m., I stood in front of my bathroom mirror and plucked my brows. There were a lot of scraggly hairs, as I haven’t gotten around to doing this for a while, and I found it kind of zen to tweeze away. But as I stood there peering at my reflection, it…