I’m excited to write this post about a Non-Profit I’m on the board of. The organization is called Let’s Cure CP and we are focused on funding research related to curing Cerebral Palsy. There is no cure for CP today and there is little research being done to look for a cure because there are…
Category Archives: Day In And Day Out
The Case for a Continuum
I attended my son’s IEP meeting this morning. Usually I leave emotionally exhausted after listening to all of the things he can’t do and all of the progress he hasn’t made. Today’s meeting was different. In January of this year, he began attending an ABA based school, designed for kids on the autism spectrum. His neighborhood school…
Open W I D E
Dental issues. These are among the many challenges that parents of special needs children and adults deal with every day. Dentist visits and tooth brushing can be especially challenging for those with an oral aversion or cognitive impairment and behavior issues. Here are my experiences.
4 Reasons to ask for help, even though it’s a pain in the neck
Okay, I’ve got high needs kids. But I’ve got my own problems too, and I’m really good at ignoring them. Which becomes impossible every once in a while, especially if I’ve been ignoring the scoliosis and arthritis in my back. Recently I messed up my neck and back (again) and went in for a massage…
It doesn’t matter if she can see or not…
Yes, it’s true. There was an optometrist who examined Olivia when she was 4 months old b/c she wasn’t tracking with her eyes and thought he was the shiz-nit and new everything about everything and told me that…and I quote…”It won’t matter if Olivia can see or not because she will be so profoundly retarded…
I’m still here, hanging by a thread.
I’ve missed posting the last two weeks, my apologies, but unfortunately I have a “teacher proof” excuse. I’m not going to rehash all the details of the last horrendous two weeks, the fears, the tears and the anger. In a nutshell: my son went into the hospital Thanksgiving night for a suspected shunt malfunction which…
Riding the Roller Coaster
No, this isn’t a post about the amusement park. The kind of roller coaster I’m talking about isn’t fun, and the people lining up to ride it are few and far between. The roller coaster I’m talking about is the one that makes me feel exhilirated when my child learns a new skill, and sad…
Peace
This has been a difficult year for our family. I’ve been praying for peace and for a break. And after watching the following video–posted by another Spina Bifida mom on her facebook page, I realized how selfish I’ve been. We are blessed. So very blessed. And I realized that despite the differences in our children’s…
What Do You Worry About?
Like most Mothers of children with special needs, I worry about doing all that I can to foster the development of my beautiful 5-year-old boys with Down syndrome. For me, worry leads to action and action to change. But lately, there’s been talk in the blogosphere about the usefulness of such worrying. In one post, it was…
My dream…
I have this dream for all of us, I dream that one day we all can walk in to “Our Toy Store” and find our kids playing in the aisles. That there are toys available to try and see if they’d work for our children. Where we’re not ordering from catalogs at home, but instead…