I had my first guest post over at my personal blog last week. It is the story of a good friend who did some peer-advocacy for her son who is in first grade and has autism.
Category Archives: Advocacy
The Hardest Word I’ve Ever Said
Seven years. Over a thousand hours at hospitals and specialist appointments. Countless interventions at home. And it turns out the most important word to help my daughter’s treatment is this: NO. No… we’re not doing a nineteenth round of medication adjustments. It’s time for hospitalization. No… I won’t take her home from the hospital and…
The Weary Woman..
The other day, I was overcome with emotion when I read what our friend Tammy said on her blog. (I’ll wait for you to come back…) This is such a sensitive topic. And one that is so often overlooked. We, regardless of situation, are still human. We have bad days. We have moments when we’re…
Treading Two Paths
I was so hoping this year to focus on building social scaffolding for the child at school. I’m dreaming of setting up a circle of friends who will know, understand, and advocate on her behalf as her differences become more apparent to her peers. I am just beginning the process of working out what that…
Wounding Words, Wondrous Words
I almost couldn’t hear it when she spoke. Words uttered under breath, understood loud and clear. “You’re so late,” she rolls her eyes, clicks her tongue in disapproval. I smile anyway, pass by, walk my daughter to class. Fifteen minutes after the bell rang, we’re entering campus. The words rattle me again. But not…
Bullying and Special Needs
Last week Grandma visited us. This week we’re visiting Grandma. Things are still going well (hooray for new medicine!) but this will be short and sweet if only because our computer access here is limited, and any minute now five people will be asking me for their breakfast. I wanted to let you all know…
What a Difference
I’ve had emotional whiplash all week. Grandma is visiting us this week. In case you don’t know the significance of those words you can read the worst part of it here. I’ve written about our struggles with her before. Turns out she does not have Alzheimers or dementia, per se, but the neurological damage she…
Speak NOW for Kids
Speak Now for Kids is an advocacy campaign of the National Association of Children’s Hospitals (N.A.C.H.) designed to engage child advocates in communicating with Congress before they cut funding for two key children’s health care programs: Medicaid, which funds health care coverage for one in three children in the U.S. and the Children’s Hospital Graduate…
Well THAT explains a lot! (New Neuroscience Research Findings)
“Did you notice how angry your sister is getting when you talk to her like that?” “Can you see that mom is frustrated when you’re not listening?” “What do you mean, you didn’t think she was sad? She’s crying!” These might seem like things only parents with kids on the Autistic spectrum may say to…
A Picture is Worth 1,000 Words
I’ve been a little slack at posting here. And today, I’m leaving you with a picture that I found and I want to adapt it to be my new mantra. The reason for the short post today is: I am currently in Wisconsin at the Institute for Patient and Family Centered Care conference. Only 1…