As a Fall birthday kid, Bear received the luxury of an extra year in preschool. I am so glad. This allowed us to kick back and focus on one aspect of her development each year. We did not have this planned out in her first IEP. It all fell into place as the years progressed….
Category Archives: Day In And Day Out
Another Day, Another Diagnosis
Well, the day is almost here… I wish I was more excited, but it’s not THAT kind of day that we’ve been waiting for. For about a month now, we’ve been waiting for the July the 19th and Monday it will finally be here. This is the day we go to meet a new specialist….
Battles not worth fighting?
“I’m ready,” said Matthew. He stood before me in a long sleeve plaid shirt, khaki pants and dress shoes. It was 103%. To top off the look, Matthew had cut his bangs too short and tried to hide the botch job with a semi-comb over. He had patches of toilet paper soaked in blood all…
Letting down your guard
I was having a discussion with my friend Sarah the other day about her daughter, Mila 3 1/2, and about how getting a bad cough meant she needed an MRI to check for a brain bleed. Now we all know that may seem extreme, as most kids with a cough don’t need to go through…
Phoning it in
It’s my first week back to 5MSN. Forgive me for my haste. I wanted to post something poignant about neuro-developmental learning but life got in the way. My article goes up at 4 pm Eastern time. I’m on the west coast, so that’s 1 pm my time. Today is not working for me. Here’s my…
How has having a kid with special needs changed your personality?
When we were in the NICU with Max, following the stroke he had at birth, there was a Debbie Downer doctor we had to deal with. One day, I got into a bit of a personal conversation with her. “I feel like this is going to change my whole personality,” I said. “It will,” she…
The Beat Goes On
Is it just me, or is it odd the way your world just stops? The lab results, the diagnosis, and the hospitalizations … the realization that your perfect child is sick. The words taste bad in your mouth. Disease. Incurable. Rare. More questions than answers, more doubt than faith. You turn to the nearest window,…
Freedom Hopes
This Fourth of July week I’ve been thinking a lot about the word ‘freedom’ as it pertains to my children with significant disabilities. It’s not flags and fireworks I’m thinking about, but rather the freedom of choice. I want my children to be able to make choices, to live life their own way. I want…
Didn’t your mama tell you that staring is rude? (Part 2)
I’ve written before about how unsettling it is to me when adults stare at Max. Well, here’s what’s even more unsettling: When kids stare blatantly at Max—I mean, just plain gawk—and their parents don’t say a word. We were on vacation all last week, and it kept happening. While we were at dinner, and kids…
Summer…Grrrrr
Don’t you just want to scream when you hear parents say how much they LOVE summer? “It is so wonderful to have NO schedule for a change!” they say. Those of us with children with special needs know that life without a schedule is hellish. I’ve worked hard over the years to set up a…