Tag Archives: occupational therapy

Finding Strength

Heather Vincent is an occupational therapist at St. Louis Children’s Hospital, where she works with children in the neurorehabilitation unit. She joined the team more than 5 years ago, after having worked in an outpatient clinic. She says the patients she has treated have inspired her in countless ways – patients like Cougar Clifford, recently featured in “The Frontline for Hope.”

Heather and Cougar

I have so many memories of Cougar while he was at Children’s, but one of the most vivid happened on the day he left. A couple of us were getting ready to go out to lunch just after one of Cougar’s sessions, and he asked if he could go with us. We all kind of looked at each other and said, “Well, we’d have to get permission.” To that, he said, “Ask forgiveness, don’t ask permission!”

That was such a Cougar comment. But, of course we didn’t go that direction. We asked permission. His team wrote the order saying he could go with us, and we went just down the street. There we all were, sitting outside at lunch, and here’s this 15 year old who can’t feed himself. He orders soup, but he’s totally not embarrassed by us feeding him. And at one point, he just stops, looks at all of us, and says, “I’m so sorry I had to go through all of this. But all of you have been placed in my life for a reason. And I feel so blessed that I met each and every one of you.”

Cougar wound up a neurorehabilitation program patient the same way so many of our kids do. He was the victim of a freak accident. Cougar was so active before. He did a lot of activities we could never endorse. He did Motocross racing and was on a motorcycle. But he did those things as safely as possible. He wore a helmet and safety gear. He knew how to fall. But then one night he was hanging out with a bunch of his buddies, playing in the snow. He did a flip into a snowbank that he thought was snow through and through, and it was ice underneath.

A few days later, I met him in the Pediatric ICU. At that point, not only was he paralyzed from the neck down, but he couldn’t speak. We were trying to come up with a system so he could communicate, so we had a chart and would have him look at a letter, then look at another letter, and he would spell out what he was trying to say. Someone asked him, “What do you think of our communication device?” And he spelled out, “Rudimentary.”

A lot of our teens come to us in similar situations, and they are understandably angry. They resist  and they fight, and then they eventually come around. But with Cougar, I saw that spark in him from day one. Even in the PICU, he knew everything he needed to do. It was painful and uncomfortable, but he got it. He knew what we were doing and why, and he never resisted. He was always ready. So he got the most out of every therapy from the beginning. He knew he was here for a fixed amount of time, and he wanted to get the most out of therapy that he could.

When he first came in and we first started working with him, he was dependent for everything. He couldn’t roll, he couldn’t sit up, he couldn’t feed himself or brush his teeth. He had nothing. The physical therapist and I spent two hours a day with him, every day. Working to regain enough strength to do even the most basic tasks is inexplicably challenging. But he was always positive. He always worked with us. And when our time was up, he always asked if we had more time and if he could do more work. He always pushed himself.

I think about those sessions and about his comment at lunch that last day, and I just sit back in amazement. He’s a teenager. He was 15 when he was with us, and turned 16 just after he left the hospital. How, at that age, do you find that strength within yourself – not only to take care of yourself, but to reassure those around you that everything will be okay? Cougar befriended so many kids while he was here. He was a big brother and an inspiration to those he met, and I know he will continue to inspire the patients who follow him. He’s certainly inspired his therapists.

Slideshow (16)He came back to visit last week, and he can almost transfer himself independently. He still needs a little help, but he can feed himself. He can use his phone. He can wheel himself in his wheelchair. He can’t go very far, but he can move around. We’ve seen incredible progress. When he left the hospital, he couldn’t use his phone. He couldn’t text, he couldn’t control it. He didn’t have the finger movement. But today, he was holding his phone, showing me stuff on Facebook, and he could navigate through his entire phone to do whatever he needed to do.

I remember him once saying, “I know that even if I don’t get back use of legs and my hands, I’ll be able to do something amazing.” And he will. He’s bright and driven and capable. Whatever he chooses to do, he will be amazing, because he is an amazing, amazing kid. It’s like Cougar said – I’m sorry he had to go through all of this. But he was placed in each of our lives for a reason, and we all feel so blessed to have met him.

“One of a kind kid” inspires occupational therapist

Nicole Weckherlin joined the team in the Cerebral Palsy (CP) Center at St. Louis Children’s Hospital four years ago. She spent the decade prior working with kids with CP in the school system. As an occupational therapist, Nicole says these children have always motivated and inspired her, because therapy can make such an impact on their lives. Jansen is one such child.

We always say the greatest resources that we pass onto our patients are the ones patients have given us. Jansen and his family truly embody this.

NicoleJansenJansen has been a patient here for quite some time.  He has a diagnosis of spastic quadriplegic cerebral palsy and is dependent for mobility, transfers and self-care.  While he may be a very involved kiddo, his family surely doesn’t treat him like that, nor does he treat himself like that.  They have high expectations for him, and he certainly gives it right back to them. To say the least, I’ve been so impressed with him and his family.

Jansen and his family live about three hours away with an incredible community around them.  Recently, his community put on a huge fundraiser to help Jansen and his family. After collecting the proceeds, his family then turned around, came to our clinic and presented us with two iPad Modular Hose mounts. Jansen has one and whenever they come to the hospital, people stop and ask, “Where did you get that?” So here’s a family that took the opportunity to use their own situation to help others. Jansen’s mom simply asked that we find a good home for them, seeking no acknowledgment or anything in return.  This family has also donated other equipment such as Jansen’s stander and gait trainer for others to use. What a great example of paying it forward.

Jansen’s family truly defines what we at the Cerebral Palsy Center have hoped for: that their appointment is not just a doctor’s visit, but the chance to become part of a network and a community. We can give advice, information and consultation, and while perhaps there’s a level of expertise we may have, we haven’t lived the day in and day out taking care of a child with special needs. That’s a well-needed and invaluable perspective.

Jansen, though living with special needs, is a bright little guy with the coolest sense of humor. Once when at a Botox treatment, Jansen brought his Spiderman figurine to help him be strong for his series of shots. As a huge superhero fan, Jansen showed us powers of his own, bravely taking on the shots without any fear.  Afterwards, when asked if it hurt, he stoically replied, “I’m Spiderman, of course it didn’t hurt!” Only Jansen…he’s a one of a kind kid.

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