Tag Archives: Kennedy Krieger Institute

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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They Know They Can

In April, the Bennett Blazers, Kennedy Krieger’s wheelchair basketball team, and I travelled all the way to Denver, Colorado for four days to compete in the 2011 National Wheelchair Basketball Association’s (NWBA) National Championships. We felt prepared—we’d been a strong team all year with a solid defense that anticipated each other’s moves. We were also the only team that had brought just six players to the tournament, which left us with only one substitute—a fact other teams seemed to be more concerned about than my players. They were ready to play the whole game no matter what, and they did.

I had complete faith in the team and their abilities, but I couldn’t have predicted their dedication, composure and confidence throughout some of the hardest minutes of basketball they had ever played. It was a nail-biter all the way to the end. Here’s a play-by-play:

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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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Can I Play With That Nerf Gun?

It was almost three years ago when I met Noah Hanssen for the first time; his mother wheeled him into our therapy gym and I introduced myself as his new physical therapist. I wanted him to feel comfortable and safe – after all, new people and places can be intimidating for an 8-year-old, especially one in need of intensive therapy. And I’ve learned over the years when working with kids, sometimes we need a bit of a “warm-up” period before they show me their true personality.

But not Noah. Instantly I could tell that he is bright, adventurous, and active. His smile won me over in seconds, as he asked his most important question during our evaluation: “Can I play with that Nerf gun over there?”

Noah and I became a team over the next few months. Always fearless and unquestioning, he was motivated to try anything I asked of him, just so long as it was fun. He challenged me to get creative and cleverly disguise his therapy as rambunctious activities that any boy his age would love. Continue reading

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“Houston, we have a problem…”

One of my favorite movies is “Apollo 13”, a tale of astronauts who experience a near-fatal accident en route to the moon. With the help of mission control in Houston, they ultimately survive a harrowing attempt to return to earth alive. For them, failure was not an option.

For most of 2009, Daniel was a typical 13-year-old boy who enjoyed hanging out with his twin brother and loved playing with LEGOs. But that Fall, he caught H1N1 Influenza and never fully recovered. There was no explanation for why the influenza virus had hit Daniel so hard. He grew very weak, and, unable to eat, he needed a gastrostomy tube to provide the nutrition and calories his body demanded. Severe pain kept him out of school, out of his life, for over a year. His parents desperately wanted help for their bedridden son, who spent most of his time curled up in a fetal position. They saw doctor after doctor in New York, but nothing seemed to help.

Daniel’s last hope was Kennedy Krieger Institute. And so, in a final attempt to relieve the chronic pain that was ruining his life, he and his family came to Baltimore.

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Finding Validation Through Hard Work

When I first started working with Kevin Sargent, he was a freshman in high school, and I was his science teacher. I knew even then that he was incredibly bright young man, who possessed immeasurable potential and a wealth of information that lay stored away, almost dormant.

But, as is so common in students on the autism spectrum, he struggled to apply his knowledge in the real world.

Diagnosed with Asperger’s syndrome in elementary school, Kevin scored well on tests. However a huge part of high school learning takes place not at a student’s individual desk, but in groups that require participation and engagement. For kids like Kevin, that presents a significant challenge.

And so, for a long time, we struggled to convince Kevin to come out of his shell and join the class. He preferred solo activities and hated classroom tasks that required cooperation with others, like lab assignments. He struggled with public speaking even in small groups, didn’t want to try new things, and he couldn’t pick up on the simple social cues that many of us take for granted. You could tell that there was tremendous potential there—I never doubted his academic abilities. But there were times that many of us at the school worried about whether he’d ever be able to fully make use of that ability to build a future for himself.

That was Kevin then.

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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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A Life Changed

Though I’ve only known Donnell Jones for a few months now, he’s the kind of person you need only know for a few minutes before his charisma draws you in.

Donnell was injured in 1996, during a game of pick-up football. In one instant, a hard hit and a broken neck left him paralyzed and unable to stand or walk. He has limited use of his arms and hands, but he can sit up on his own, and we have been working hard in intensive therapy sessions to help him regain more function.

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Matthew’s Posse

When I first learned of Matthew Slattery’s story, I had the same reaction that anyone would. The circumstances of his injury can only be described as heartbreaking, a feeling that even physicians aren’t immune to. And with Matthew, it all felt especially close to home for me.

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“I’ll be back soon”

There are many reasons why I am so glad to be part of the inpatient rehabilitation team at Kennedy Krieger. Driving more than an hour each way to and from work is not one of them! However, the determination, courage, bravery, and perseverance of my patients and their families tops the list most days. Morgan Dunnigan and her family are perfect examples of this positive spirit and how, despite tragic personal loss, it’s possible to overcome and return to the happy parts of life that you knew before.

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