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 […]
Posts with the Spina Bifida tag
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 […]
One by Kathryn Otoshi will help you talk with kids about inclusion, acceptance & courage
The book “One” by Kathryn Otoshi reminds readers that everybody counts, and is a great tool for facilitating conversations with kids about inclusion, acceptance & courage. The story highlights the message that when one person is brave and confident enough to stand up to a bully, their actions can give others the courage to stand up along […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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?” […]
Allowing children to be children, regardless of mobility
I crossed paths with the question “when is the right time for a mobility device?” multiple times today. It’s an interesting question. When really is the right time? Should we follow a “typical” timeline? Should we listen to our mommy gut? Should we be the catalyst for getting new equipment? Should we assume our medical team and therapists […]