Have you ever been in a group setting and felt like a total Debbie Downer? You know, the Saturday Night Live character who always talks about natural disasters and deadly diseases bringing everyone down and halting all conversation? Well I have. Shortly after my daughter’s diagnosis I was invited by a friend to one of…
Category Archives: Dealing With Public Perceptions
Inclusion Runs Deep (Or It Should, Anyway)
For those of you who don’t know my story… yet (and for those who do, sorry, you’ll have to suck it up and read it again), My beautiful Boys are a matched pair who also happen to have an extra copy of the 21st chromosome. Yes, my amazing 5-year-old identical twins have Down syndrome. That…
A Different Kind of Stalker
I’ve always tried to live my life being respectful of others. I’ve tried to teach my children the same. For example, I often remind my children that it is not polite to stare at someone who is different. It’s a rule I’ve tried to follow my whole life, and yet, over the past several years…
My Good Samaritan
I seem to be having poignant encounters with strangers lately. One was rather negative at the time, and one was astoundingly beautiful. I’m trying to learn from both and squeeze all the good I can from these moments. I’d like to share the beautiful one with you. We traveled for Thanksgiving, 400 driving miles, which…
Addressing “The Look”
We’ve all experienced “the look” from folks whose mothers apparently didn’t teach them it’s not polite to stare. Sometimes it really bothers me. Sometimes not. Recently, I had the opportunity to unofficially analyze the look and figure out the difference…. for me! I spent a day at the Bronx Zoo with my 3 beautiful children —…
Tube Wars
For the past 20 years my daughter Melissa has used a NG tube as her primary method of feeding. There has always been much controversy about the use of NG vs. G-Tubes. My story offers our experiences.
Staring
I try to teach my kids to be curious, but not to stare. To be kind, but not condescending. To be honest, but reserved. Last weekend, we made a trip to the outlet malls about an hour away from our home. The boys were both in desperate need of soccer shoes. Isaiah was in even…
What’s Wrong With Him?
“What’s wrong with him?” – ask the kids in the playground when my son refuses to play with them. “What’s wrong with him?” – asks my uncle when my son refuses to eat anything but dry cereal. “What’s wrong with him?” – asks my aunt when my son jumps around because there are too many…
Special Needs Special Abilities
Lots of folks have disabilities. I have dyslexia and am ADD. I have a lack of ability to gain some skills the way typical people gain skills. My daughter has CP she too has the lack of ability to gain skills the way other typical people gain skills. Neither my daughter nor I have a…
You Don’t Need to Feel Sorry For Us
One things that saddens me about having kids with special needs is when folks tell you that they are “sorry” your children are disabled. I don’t mean to be ungrateful! I appreciate their concern, I really do. It’s just that I don’t consider my children a burden (Sure, they are HEAVY. They ARE finally gaining…