Tag Archives: developmental disabilities

On the Brightside…

It’s no secret in the developmental disorder world that individuals with Down syndrome are often among the kindest, most precious individuals to walk the planet. In an online article published by the National Association for Down Syndrome, one academic researcher wrote that, if people with Down syndrome ruled the world, “affection, hugging and caring for others would make a big comeback.”

Working at Kennedy Krieger—both as director of Social Work and of the Brightside Program for individuals with Down syndrome—I am so incredibly fortunate to share in the lives of so many of these incredibly caring and unique individuals. Sure, everyone has their bad days, and those with Down syndrome are no different. But, in the grand scheme, their exuberance and caring demeanors make me feel so lucky to know them. And Alexandra Carter is no different.
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Miracle for Megan

I first met Megan Miceli when she was 6 months old. She was a beautiful little girl with blond hair and blue eyes and an infectious smile that reached from ear to ear. But when her parents noticed that Megan wasn’t hitting milestones at the rate her siblings had, they grew concerned and brought her to Kennedy Krieger.

With weekly physical therapy sessions and her mother diligently working with Megan at home, she slowly began making strides in her motor skills. In the meantime, an extensive medical workup revealed she had hypotonia and a gene microdeletion, which was the root of her medical problems. The gene deletion is so rare that there have only been six reported cases since 2009. In addition she was also recently diagnosed with episodic hemiplegia, another disorder that affects 1 in 1 million people. Without warning, Megan can experience an attack of paralysis on the left side of her body multiple times per week, each lasting between 5 and 20 minutes.

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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.
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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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A Different Kind of Adventure

We see a lot of special and inspiring families at Kennedy Krieger. Shannon and Kurt Berman, along with their son Cooper, are perfect examples.

Throughout the pregnancy with Cooper, and from the time he was born, his parents were determined to give him a multicultural upbringing. Having lived and worked all over the world themselves, they strongly believed in the importance of raising him in different countries, submerged in different cultures and adventure. But when Cooper was diagnosed with autism, they worried that their plans would have to be laid aside and that their goal of raising their son internationally might be impossible.

By the time Cooper had turned 1 year old, his parents had already become worried about odd behaviors, which only seemed to be getting worse. Like so many of the children I see with autism, he seemed disconnected, didn’t make eye contact, screamed and cried unexplainably, and demonstrated repetitive behaviors, such as opening and closing doors over and over and over again. At the time when these unusual behaviors began to emerge, Cooper and his parents were living on a small island of Thailand, in the middle of the Indian Ocean. People there don’t even believe in developmental disabilities, let alone offer treatment for them. Continue reading

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Triple the love

Anyone who decides to open their homes and their hearts to foster a child with special needs obviously has a lot of love to give and a clear desire to use it to help children.

As a social worker with Kennedy Krieger’s Therapeutic Foster Care program, I’m fortunate to meet so many kind and loving individuals who simply want to provide loving, stable homes for children in need—some with multiple medical or behavioral issues. Sometimes, one of those families decides they want to commit to a lifetime of caring and become a forever family to a child who desperately needs just that.

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Fear Is To Be Conquered

At Kennedy Krieger, we pride ourselves on “unlocking the potential” of children with special needs. It’s easy to visualize the meaning of this for a child with a developmental disability, who might learn new skills and walk or talk for the first time with the help of the team here. Still, when I first came to Kennedy Krieger to launch a center for muscular dystrophy, it wasn’t immediately clear to me what “unlocking potential” meant for the children and young adults in my care. After all, muscular dystrophy is a degenerative condition where children are born with normal function, but slowly lose strength and skills over time.

That was until I met Ben.

For Ben Cumbo, a diagnosis of Duchenne muscular dystrophy (DMD) meant a future in the spotlight – literally. As a National Goodwill Ambassador for the Muscular Dystrophy Association (MDA), Ben and his parents traveled around the country to raise awareness and funds. In fact, you may remember Ben spontaneously showing off his dance moves on national TV alongside comedian Jerry Lewis during the 1997 MDA Telethon. It was only a few years later that DMD finally robbed Ben of his ability to dance.

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Inspiring Potential

Welcome to Kennedy Krieger’s first venture into the blogosphere. Here at the Institute, the work we do is rooted in the belief that all children, regardless of a disability, should have the opportunity to reach their full potential. Continue reading

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