Hello Ability Hacker Friends! It’s been a while, and I’ve missed you. Just as our life started getting back to normal after a year full of medical challenges for our family, the Novel Coronavirus entered the picture – throwing life sideways once again. This past week has been full of stress for me (as I’m […]
Posts in the Spina Bifida category:
School Emergency Planning for Kids with Disabilities
About a year ago, I had an “aha moment” during a work safety meeting when a police officers said the best thing to do in an active shooter situation is to run. Run, run, run … as far and as fast as you can. My mind went to my daughter and her school. Her disability makes […]
Best helper cart for kids who wear AFOs, use crutches or use a walker
When my daughter was 4 years old, she was eager to help. We wanted to find a way that would enable her help set and clear the table for meals. However, at the time she needed her walker or crutches to move around, meaning she couldn’t carry anything in her hands. We tried having her push an […]
How “Jessica’s Box” by Peter Carnavas helps readers connect with the character and see past her wheelchair
The book “Jessica’s Box” by Peter Carnavas is my favorite type of inclusive book because it shows a child with a disability experiencing the same feelings and concerns that all children have, without making the disability a central aspect of the story. By not making the story about Jessica being in a wheelchair, it helps all children connect with […]
Why you should read “Can I Play Too?” by Mo Willems to promote inclusion & acceptance
The book “Can I Play Too?” by Mo Willems promotes acceptance of people different from ourselves, demonstrates creative problem solving, and helps kids see the importance of resilient perseverance. It’s a great book for talking to kids about disability and inclusive play, especially when a peer uses equipment such as a wheelchair, walker, or crutches, has […]
Changing How the Media Portrays Life With a Disability
As I watched the coverage of Stephen Hawking’s passing, it became clear it’s time to start a revolution on how we talk about people with disabilities and how we represent them in the media — big media and social media. The way we talk about people “escaping” their disability and being “free” after they die is not OK. […]
A Mother’s Lessons
I had the pleasure of being interviewed by the “Good Things Going Around” blog in early March. Lisa’s questions got me thinking about some really interesting topics – like what things I’d like to see parents teach their kids, the greatest gift of being a parent, lessons my kids have taught me, and a great piece […]
Visiting “the big robot” as a 5 year old
Today was Lily’s yearly MRI, and it seems fitting that my “Big Medical Tests – When Kids Have to Be Brave Beyond Their Years” post from last year popped up in my memories on Facebook. This year, her brave pillow looks much more worn, and her face looked super nervous as we entered the hospital for the […]
Converse “Easy Slip” Chuck Taylor Sneakers
A post of mine from last year has resurfaced, and I’m getting a lot of requests for where to buy the converse sneakers with the back that flips down and velcro shuts. The links from the post are a bit outdated, so I did a search and found some new links. See below! We loved […]
Halloween Costumes & Industrial Strength Velcro
Below is a link to great advice from Easterseals on Halloween costumes for kids with disabilities or special needs. The article mentions that doing a trial run with the costume is a good idea, and that learning tips on how to attach costumes to wheelchairs and other devices will help along the way. When doing […]
How Spina Bifida influences how I dress & shop for my daughter
At the beginning of summer, I realized my son had grown out of his 18-24 month clothes, and it was time to upgrade to the next size. Shopping for him was surreal. What is this uber-easy experience of walking into a store, looking for a size, seeing something I like, and… buying it? Good-ness. SO. SIMPLE. When gifting […]
Fear was holding me back from giving my kids an awesome summer
When Lily was first born, one of the things I struggled with the most was approaching a child care center and asking if she could attend. I wrote a post about it here, and what this experience taught me about bravely asking bold questions. These last few months I’ve been struggling with something very similar. […]
Deep thoughts about dancing…
This Mother’s Day weekend, I kept finding my mind flittering back to our 20 week ultrasound with Lily, and the time before she was born. The ultrasound tech mentioned Lily’s long legs and pointed toes, and my husband made a comment like, “maybe she will be a ballerina!” I remember seeing a look flutter across […]
Ladies & Gentlemen… we’ve gone all terrain!
From the moment my daughter started using her Kaye walker full time at 2 years old, I have had a dream. A dream of an all terrain walker that glides smoothly and easily over grass and dirt and mulch. A walker that doesn’t require muscle and struggle to cross uneven surfaces. Isn’t that a beautiful […]
Zubits – Adapting Shoe Laces – Open & close with magnets!
Tonight I came across a new product that I think could be life changing for many people who have trouble with their fine motor skills, or who have to wiggle and squish bulky braces (AFOs, etc.) into shoes. My daughter has challenges in both of these areas, so I’m super excited (and hopeful) about this new […]
Where to buy shoes when your feet are two different sizes
One of the questions I’ve been asked a few times is whether I’ve heard of any resources for people who need two differently sized shoes due to two differently sized feet. I’d heard rumor that Nordstrom will sell two different sizes shoes, so I went investigating. And guess what? It’s TRUE! And you know what? […]
A fabulous day for clothes & shoes!
When I think of all challenges we’ve faced over the last 4 years, the two that rear their ugly heads over and over again are clothes and shoes. Clothes: Over AFOs & twister cables Every day when I pick out Lily’s clothes, my mind is running scenarios. “Hmmm… I know these pants fit over her braces, but […]
Crutches & kindness
We met a pretty fantastic milestone last month. In some ways it seems little because we’ve slowly been progressing this direction for a year and a half. But it’s big because… well… we’ve been working towards it for a year and a half!! Are you ready?!? Drum roll please… Lily is using her crutches ALL MORNING […]
Big Medical Tests: When kids have to be brave beyond their years
In early November, time came for Lily’s yearly spine and brain MRI. This test starts to stress me out months before it happens. It’s an hour and a half long (so so so long for a little kid), and each time we hope for the best (all is stable), while knowing that one of these […]
When a girl wants to be Ned the Junior Conductor from Dinosaur Train
She wanted to be Ned. Ned the Brachiosaurus from Dinosaur Train. I will admit that I tried to change her mind. “How about Buddy or Tiny? They are both on Dinosaur Train” we said (you can actually buy these costumes). “No. I want to be Ned” she said. “How about pac man?” we asked. “Daddy […]