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…
Category Archives: Raising Awareness
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…
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…
Different or Fancy?
It was a relatively easy, but somewhat mind-numbing task to accommodate the child’s fixed preferences at her place setting. We don’t have quite enough “matching” flatware pieces to make it to the next dishwasher run. We tend to run out of teaspoons and case knives before plates and bowls. Over the years of combining two…
Book Review: House Rules by Jodi Picoult
Most people just don’t get it right. When they write for us, about us, or to us. When it comes to others’ view of our lives in families with special needs, I’ve never seen anyone show it like it really is.* The lack of realism, empathy (and appropriate gallows humor) is partly why I’m writing…
The Anonymous Note, Part 2 And Those Kids Who Inspire Special Needs Moms
When my daughter Zoe was a toddler, she didn’t spend her days spreading out her toys and playing on our cool tile floor , or toddling around clutching her favorite doll with sticky juice hands like her big sister Olivia did. Instead, Zoe preferred to cuddle for comfort. Her speech didn’t develop until late so…
US Autism & Asperger Association World Conference
US Autism & Asperger Association (USAAA) will live stream the annual USAAA World Conference for the second straight year on USAAA TV. The broadcast will begin Thursday evening, 7 pm PST, October 27, 2011 and continue through Sunday, October 30, 2011. Over thirty of the world’s leading Autism Spectrum Disorders (ASDs) experts will discuss evidence-based…
Romanticizing Adoption and Special Needs
It’s tough being an adoptive parent. And a parent of special needs kids. I’m both. And today reminded me of one of the most frustrating aspects of our situation: other people romanticizing it. Sitting on a counselor’s couch at a residential treatment facility where one of our girls has been for 6 weeks, life doesn’t…
Special Exposure Wednesday – Julianna
Meet Princess Julianna, or more accurately Pixie Princess Julianna. Don’t let the angelic face fool you, the girl can hold her own against two brothers. Get to know her in her mom’s own words. Share what you managed to capture this week. Please spread the comment love around. *This is part of a month long…