Monthly Archives: August 2011

Pretty in Pink

It’s a classic backyard image: a kid flying through the air on a swing set.

Aside from the occasional bumps and bruises, it’s also not something that seems especially fraught with danger. And in truth, although swing sets and playgrounds are often cited for safety concerns, serious injuries remain relatively rare.

Rarity, however, seems to make tragic accidents an even tougher pill to swallow.

It started with Mikaela Deenen innocently swinging in the backyard. But, unbeknownst to her or her family, torrential rains here in Maryland had caused the swing set to come loose from the ground. When it toppled over, the swing set landed on top of Mikaela, crushing her spine. Continue reading

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Beyond Limitations

In Rosalind Chen’s home country of Taiwan, Osteogenesis Imperfecta (OI)—commonly referred to as brittle bone disease—is so rare that some physicians haven’t even heard of it, let alone been properly trained to diagnose and treat it. Consequently, the disease—which not only causes extremely short stature in patients, but also makes them highly susceptible to broken bones—has only recently gained attention there.

Rosalind herself has a severe form of OI. Aside from having brittle bones, her height limits her ability to move around and she uses two crutches to improve mobility. She is always at risk for a fracture should she stumble or have an accident. But she doesn’t let that stop her from living a full and active life.

I first met Rosalind earlier this year, when I traveled to Taipei, Taiwan, to attend and speak at a conference that she had organized to in hopes of spreading awareness about brittle bone disease and promoting better care for patients like herself in Southeast Asia. Since meeting her, I have been amazed at her complete mobility and her ability to interact with others. It’s as if she has no disability.
Continue reading

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Running The Show

As a special education teacher in the industry program at Kennedy Krieger High School, I have an opportunity to see our students in a different light than many of my fellow teachers. While they help the kids tackle academic skills and life skills, I teach work readiness skills in Café James—a unique environment where we arm students with critical job skills for careers in the hospitality and food service industry.

This marks my third year teaching in Café James. It’s a huge reward to watch my students become more and more independent in their work. One class, in particular, impresses me daily because I’m especially proud of their progress in the face of the obstacles their diagnoses present. If you walk into the café during this period, you’ll find me grinning with joy at my students who are “running the show” with minimal support. This group of students is what we call an Academy 3 class. Students in this Academy present the most significant need for special education or related services support in a classroom setting, with a disorder or disability which has a significant impact on academic or cognitive function.

Each student has a specific role in Café James, which complements their abilities and offers them opportunities to overcome their personal challenges. The students must each excel in their roles to successfully run the café for an entire class period. Let me take you through a typical day in Café James during fifth period. Continue reading

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25 Years of Dedication

In my 21 years with the Down Syndrome Clinic at Kennedy Krieger, I’ve been privileged to meet many children with Down syndrome and watch them grow up to lead fulfilling and independent lives. I feel lucky to be a part of such an inspiring community of families.

When I was first appointed as director of the Down Syndrome Clinic, I was a little surprised when I was told quite frankly that I must attend the clinic’s annual event at the airport, a race organized by Wayne Malone, whose son has Down syndrome. Such a mandate seemed curious to me, but when Pat Winders—a former employee who was one of our clinic’s biggest advocates in the early days–tells you to be somewhere for the clinic, you show up. I didn’t know all of the details then, but what I was about to take part in for the next 21 years continues to inspire me in my work today. I would like to take a moment to share with you the story of Wayne Malone, a man who singlehandedly formed a community of people and resources for those affected by Down syndrome. Continue reading

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Try, try again

I have never met a kid who tries so hard.

Even with the limited abilities he has, I have never seen Matthew Slattery sad or upset. If he ever feels sorry for himself, he never shows it. And he never seems to show up to therapy without a smile.

Of course, all of that is well and good—it makes him a pleasure to work with and helps everyone involved in his care to remain positive and hopeful. But it takes more than positivity to produce outcomes: It takes determination and perseverance—traits that Matthew has in abundance. Continue reading

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