A community resource for pediatric stroke survivors and their families

Hello World!

I’m the mom of a child with Special Needs. My son, Bennett, had a stroke in utero which resulted in hemiplegic cerebral palsy (left side weakness/paralysis), hemianopsea (no visual field on left side of both eyes) and seizures (which were ‘treated’ with a hemispherectomy after 8 medications over 2 years failed to control them).

I am planning to create a 3-week intensive Constraint Induced Movement Therapy (CIMT) camp in San Francisco. This camp will be modeled on Camp Helping Hands, which my son has attended twice in New Jersey.

(http://intensivetherapeutics.org/chh.asp)

This camp will be incredibly valuable to the kids that attend (generally stroke survivors with hemiplegic cerebral palsy, where one side of their body is weaker than the other) for both therapeutic and social/emotional development, as well as a fantastic experience for the people who lead it. I am just a mom trying to make this happen for my son, but I know there is a great need for an intensive therapy camp to happen in the Bay Area. I’d like to ensure that this camp happens every year, and perhaps even year-round.

A more detailed description of CIMT can be found here:

http://www.health.uab.edu/16193/

http://www.kennedykrieger.org/kki_cp.jsp?pid=4501

At CHH, children spent four weeks learning how to better use their affected arm and integrating that use into everyday bilateral activity.  At the beginning of each day, the children don a removable cast on their unaffected arm, forcing them to use their affected arm to play games, sing songs, eat, carry toys, wash hands, etc.  By the end of each 6-hour day, the cast is off again and they are using both hands for these activities.

CHH attributes its success to several factors.  First, the playful, summer-camp feel keeps the kids engaged for long periods of intense therapy. The camp has a one-to-one ratio of therapists/volunteers to kids to help ensure they are always successful in their efforts.  Second, there is terrific camaraderie and normalcy, even peer pressure. All the participants wear a cast and struggle to do what typical kids take for granted. At CHH, they work, play and succeed together. The children develop a sense of self and a sense of belonging by being surrounded by peers who are just like them.

I am not alone in recognizing the success of this model.  The first year Bennett attended Camp Helping Hands there were 12 kids; last year there were 20. Children came from Canada, Saudi Arabia, New Jersey, North Carolina, Florida and California to attend. There are many families in the Bay Area who are desperate for a program like this. The need is there and the interest is there. We need to make this happen for the families who are willing and able to attend.

Although pediatric insurance companies poorly fund rehabilitation, we were able to get a large portion of the cost covered by our PPO insurance. Regardless of the cost, there are families who want this option for their children. They want the possibility that their child will be able to use their affected hand in their lifetime. And one of our goals over time will be to fundraise to provide scholarships for families who cannot afford the camp. Ultimately, it saves money in the long run to rehabilitate these children while they are young and minimize their motor deficits.

“CAMP BENNETT”

This year, I aim to have 4-8 kids participating, and an equal # of adults (1:1 adult:patient support including an OT, an OT intern, myself and volunteers. We will hire an additional OT and get another OT intern if the camp grows large enough). Ideally, we’d like to run the camp  6 hours per day for 3 weeks (9-3 M-F). Our ideal dates would be June 14 through July 2, our second choice would be the week of June 7-June 25. We might also push it back into July if needed. (The dates are dependent on a location and therapist’s schedules.)

To keep the cost of the camp down, I will likely divide the camp into 3 hours of intensive therapy in the morning, followed with 3 hours of ‘therapeutic activity’ (the kids would remain casted for lunch, art and cooking classes, yoga and movement, music therapy, bike rides, playground time, and bilateral activities) . I am hoping to keep the camp under $3,000 for the 3 weeks, but it could be significantly less if we get the space donated (we might) and other costs stay low, and we pay for an OT/PT only 1/2 the day.

What I’m doing now:

  • I’m reaching out the local colleges with OT/PT programs to get interns to help facilitate the Camp.
  • I’m rounding up volunteers to help out as needed with  activities throughout the day and provide support so that each child can be 100% successful in their goals.
  • I have various potential sites lined up, but I am holding out to find an existing OT practice that would like to help with the whole camp!
  • I’m gathering toys, games, art supplies and therapeutic equipment to use during the Camp.

How can you help?

  • We hope to be able to accept donations soon and will keep you posted.
  • We also need some help in creating a non-profit (501.3..c) or be under the umbrella of another non-profit organization.
  • We are open to any idea you may have that would help us launch this important and much-needed Camp.

If you have any interest in being a part of this, or if you know of children of any age who might benefit, let me know. Please help me make this dream for my son (and all the other hemiplegic kids on the West Coast) a reality.

Thank you,

Audrey Vernick

Bennett’s Mom

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Comments on: "CIMT camp in San Francisco this summer (2010)" (1)

  1. This is just awesome! Thanks for putting this online 🙂

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