Category Archives: Developmental Disabilities

Twelve Hours

As a weekend nurse on the inpatient unit at Kennedy Krieger, I work 12-hour shifts every Saturday and Sunday, caring for children with challenging injuries and disabilities. My own children, at 11 and 15 years old, spend their weekends engaged in a variety of fun activities, free from the grind of the school week. Last year brought a move to a new home in southern Maryland—Calvert County to be exact—which doubled my commute time to 90 minutes each way.

I often meet new people at my children’s school, and, as we get to know each other, we eventually come to the inevitable question of where I work. I’ve had this conversation enough times that I know what comes next. I tell them that I am a nurse—not terribly unusual since most people know someone in the medical field. Then, I tell them that I work at Kennedy Krieger… in Baltimore. The actual response may vary, but the implication is always the same: Why!?!

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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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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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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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It Takes a Family

As a social worker in one of the nation’s largest autism centers, I frequently meet families from all over who come to us seeking help for their child. They travel from across Maryland, from other states, and sometimes even from other countries. No matter where a family is from, each parent wants the same thing –the best chance for their child‘s future. Continue reading

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Against the Odds

In my experience, Erica Carter is the rarest breed of foster parent.
Many of us in the Therapeutic Foster Care program were amazed when we encountered this woman. As a single mother in her 30s with a grown son, she defied foster care statistics when she welcomed a child with special needs into her home and then opened her door to the boy’s two brothers as well. But when she chose to adopt all three of the boys—each with developmental disabilities—she outdid herself.
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