With Betsy Devos’ hearing making national headlines this week, I thought it’d be helpful to share why a federal focus on special needs education is so important to us. Maggie “graduated” from Pre-k last summer. She wasn’t there. But she Continue Reading
Take a breath
It’s been awhile since we posted anything here. After Rett Syndrome Awareness month, we’re emotionally and physically drained. The event is an intense amount of work, the awareness and videos takes up time too. On top of that, Maggie’s health Continue Reading
Hand Use Regression in Rett
These pictures are from last year. She won’t hold anything right now. One of the first symptoms of Rett Syndrome we noticed was the hand wringing. It started ever so slightly in her right hand before we even knew anything Continue Reading
Hang 10
https://www.youtube.com/watch?v=Ol5FO-dh-9E&feature=youtu.be It’s hard to know what’s in the mind of a 5 year old. It’s harder still when that 5 year old is non verbal. But when Maggie’s cousins were coming to visit and they all wanted to go surfing, Continue Reading
The 6th and 7th Stages of Grief
“The Kübler-Ross model, or the five stages of grief, postulates a series of emotions experienced in grief, wherein the five stages are denial, anger, bargaining, depression and acceptance” That’s usually in reference to people coping with death or loss. I Continue Reading
The Next A-Rod
Even though Maggie is dealing with a lot, and she struggles through most of her days, she is still a kid. Sometimes that’s hard for us to remember. When you have to talk to a 5 year old about serious Continue Reading
An Open Letter to President Obama
I know it’s going to seem like I’m trying to catch lightning in a bottle again. And, I am. And yes, we’re aiming high, here. But, anything worth having is worth asking for. For Maggie, everything is worth fighting for. Continue Reading
Bubble Burst
Everything that Maggie wants to do is hard for her. It takes an immense amount of concentration and practice in order for her to accomplish even the most mundane of tasks. She didn’t spontaneously start jumping on a trampoline. I Continue Reading
Coping with anxiety in crowds
We try to do typical things with Maggie whenever we can. It’s important to give her the same kinds of experiences that typical kids would have. She deserves no less. That said, we are always nervous about putting her into Continue Reading
#TakeThatRett
https://youtu.be/atAEaJ0FH3w I see #takethatrett as a rallying cry every now and again. When someone’s daughter takes a few steps, when they say a few words, when they climb a few stairs. It’s wonderful to see girls pushing through the hardship Continue Reading
