Halloween is just around the corner, and while the holiday can pose some challenges for kids with disabilities, having extra equipment can make costumes even more fun. Pirate… Aargh! Two years ago, Lily had just started using her walker when Halloween rolled around. I found a really cute pirate costume, and then got super excited about […]
Posts in the Spina Bifida category:
Approaching Disability: In many ways, we are the same
One of my passion areas is educating people on what disability looks like “behind the scary curtain.” Disability is a topic people have a natural tendency to avoid, but this natural tendency has unintended consequences like separating people with disability from the rest of society. This is partly why I blog, why I share so […]
10 Lessons I learned when my daughter didn’t meet the goals we set in therapy
Ever have one of those days when things become unexpectedly clear? This summer I felt perpetually uneasy. It’s hard to explain, but I’ve been second guessing myself, worrying more than normal… just simply out of sorts. I want to do what is right for my family, what is right for Lily’s development, what is right for my career, […]
How to buy shoes for AFOs in less than 15 minutes
This past weekend, as I surveyed the 3 pairs of shoes we have to fit over Lily’s AFOs, I felt discouraged. On the plus side, we have 3 pairs of shoes that fit! On the down side, two pairs look REALLY worn. I can literally look through the sole as a window to her AFOs. The third… well, […]
3 Signs You Might be an Ability Hacker
Sometimes when I tell people the name of my blog, they look at me sideways with a slightly puzzled expression. Eventually, the question comes: “What exactly is an Ability Hacker?” I decided it’s high time for me to put pen to paper (or fingers to keys as the case may be) to put together a formal definition. […]
A Summer of (too many) big ideas
I often find myself wondering how much I should push Lily with extra therapies, new skills, and new equipment versus how much I should step back and let her simply enjoy being a kid. I want to help her grow stronger and gain more independence, but not in a way that makes her everyday life […]
What does a peanut have to do with special needs parenting?
When tackling a herculean task, the people I work with will sometimes say “we just need to push the peanut forward.” I know, it’s a strange phrase, but I love the concept. What the saying means is that when a challenge is overwhelmingly large, and it feels like ultimate success may not ever be achieved, we should focus […]
How to “Hack” Shoes for AFOs #2: A Coat of Armor to Extend Shoe Life
As my girl has gotten stronger and more capable with her walker, she has also gotten more creative with her walking. The recommended “heel-toe” walking gait (which I’m pulling my hair out trying to get her back to) just seems to frustrate her because it’s not getting her where she wants to go fast enough. […]
3 Lessons I learned about bravely asking bold questions
One of the tasks I found the most difficult when I was pregnant with my daughter was calling a daycare center to inquire about her attending. I simply could NOT make myself pick up the phone and dial. I delayed… and delayed… and delayed. At that time, it felt like the many pieces of me were […]
5 ways to build hand strength and fine motor skills with everyday objects and activities
When my daughter passed the 6 month mark, I noticed that she kept her left hand in a fist most of the time. All the reading I did told me we should be concerned, so my insides kept knotting up as I obsessively watched her to determine whether her actions were typical or atypical. A few weeks later, […]
Medical Supply Hack: Stand up antiseptic wipes with a simple package fold (keep them sterile)
Now that we are three and a half years into being parents of a child with extra needs, medical procedures are a normal part of our daily routine. At first, however, they seemed overwhelming. Many things contributed to moving these medical tasks from the “OMG how am I ever going to do this?” column to the “It’s […]
Spring opens the door to playing outside – find an accessible playground near you!
This past weekend I sat outside under the bright sun and spring flowers, and drew pictures on the sidewalk with my kids. There is something magical about playing outside in the bright warmth after a long, gray, cold winter. I can’t seem to soak up enough of the sun. When I think about fun outdoor spring […]
How to “Hack” Cute Shoes for AFOs #1: Remove the Tongue
One of the most frustrating things about having a child who wears AFOs is how hard it is to find shoes to fit. My daughter started wearing AFOs at 3 months old. For the first year, she simply did not wear shoes. However, when she started pulling to stand I knew I needed to tackle the […]
Carrying an Easter Basket for Kids Who Use Walkers
Last week I posted about 8 Fun Easter Hacks for Kids with Varying Abilities. Since then, I found another one! During an Easter egg hunt, children using walkers can carry their own Easter basket by using a Think King Hook. We use the Think King hooks on our strollers for holding all sorts of things, including hanging […]
ReelAbilities Cincy: FIXED lit my brain & heart on fire
This afternoon I helped host the film FIXED: The Science/Fiction of Human Enhancement at the Cincinnati Museum Center as part of the ReelAbilities Film Festival. The film questions commonly held beliefs about disability and normalcy by exploring technologies that promise to change our bodies and minds forever. The story is told primarily through the perspectives of […]
Challenge: Get Connected. Feel Empowered.
I am going to tell you a story about an important lesson I learned, and how that lesson helps me today. Story: As a single young adult, I had a very hard time finding a church that made me feel at home. No church compared to the one I attended as a child. When I walked […]
Tripped up by good intentions and imperfect visions
Being a parent to a child with a disability can be a very humbling experience. Last year about this time, one of my biggest worries was getting Lily set up in a “big girl” bedroom before our new baby arrived in April. We hit road block after road block getting this seemingly simple task accomplished. My […]
3 Reasons Why You Should Never Underestimate My Child
My daughter recently aged out of our state’s early intervention program. As a result, she now attends preschool at our local elementary school, getting physical and occupational therapy as part of her school day. The initial process of qualifying for therapy and establishing her IEP was overwhelming and confusing. However, once we got past that […]
Building your “Medical Gut”
A few years ago, soon after starting a new job, I was asked to answer an important business question by a senior leader in the organization. The problem: I didn’t have the right data on hand to answer the question because the report had not yet arrived from the supplier. My manager nonchalantly told me, “Just go with your gut. What does it tell you?” […]
More flexible sitting solutions for kids who need extra support
After my article highlighting the Leachco Prop R’ Shopper for unstable sitters, I learned about a few other sitting help products which I want to share. I have not tried these personally, but I reviewed the comments and highlight key points reviewers have made below. Firefly – GoTo Seat The GoTo Seat looks like a wonderful way to […]