A community resource for pediatric stroke survivors and their families

Support for Families is proud to host a new Peer Group for Kids Aged 8-12 with Cerebral Palsy beginning October 23, 2012 to be held on the 4th Tuesday of each month from 5:30-6:30pm. This group will be a place for kids with CP to play, socialize and interact. There will also be a buddy/mentoring component, as we hope to involve older teens and young adults with CP. Kids will participate in activities consisting of games, relaxation exercises, social time, and more. The facilitator of the group is Kris Meadows, a young man with CP who is also a student of Occupational Therapy.

 

While their children are participating in the Peer Group, parents can attend the Parents of Children with Cerebral Palsy Group which will be facilitated by Audrey Vernick, parent of a son with hemiplegic CP and the founder of Camp Bennett.

 

Please note that parents/guardians must remain onsite while children attend the Peer Group. Childcare is available for siblings, if needed (sign up at least 1 week ahead of time).

 

For more information or to register for the groups, please contact the Support for Families’ Warmline at 415-920-5040.

Mom Creates Camp for Pediatric Stroke Survivors

By: Louise Rafkin

At only 5 months old, Audrey Vernick’s son Bennett, now 8, began suffering multiple seizures, sometimes more than a hundred a day.

A brain scan diagnosed him as a prenatal stroke survivor, likely having occurred in the second trimester of Vernick’s pregnancy. As early as 6 months, it was clear the left side of his body was weak and that his left arm was partially paralyzed. Vision problems soon surfaced.

Vernick, an author and former photojournalist, approached the challenge of having a special-needs son with a single question forefront in her mind: “How can I make Bennett’s life better?”

That question motivated Vernick, 44, to create a special summer camp for children who have suffered prenatal strokes. It’s a small group of children. According to the Children’s Hemiplegia and Stroke Association, prenatal stroke occurs in about 1 in 2,800 infants (in utero or younger than 1 month), and pediatric stroke occurs in 11 in 100,000 children from 1 to 18 years old. Because the numbers are so small, a support network and services can be hard to find. Vernick spent four years researching opportunities for her son before taking steps toward changing the equation.

Most prenatal and pediatric stroke survivors suffer weakness on one side of their body; many have other serious disabilities. When Bennett was 4 and 5, Vernick took him to a New Jersey-based summer camp where the main treatment was constraint-induced movement therapy. The idea is to restrain the child’s “good” arm in a cast, forcing the brain to make better use of the “bad” arm.

With the goals of developing motor skills and core strength, removable casts go on first thing in the morning. Combining orthopedic rehabilitation, social-skills building, physical activities, games, crafts, cooking and swimming keeps the kids moving and engaged through the frustration of being casted.

At the East Coast camp, parents and children arrived from as far away as Toronto and Saudi Arabia. Vernick saw positive changes in Bennett’s abilities, plus had the added joy of seeing him among his peers. But only a few such camps existed, none locally. The closest one at the time was in Seattle, which then was offered only to Washington residents. The distance to the East Coast made attending logistically difficult. It was after the birth of her second son that the resourceful Vernick decided to start a similar camp.

In the sunny dining room of the Eureka Valley home she and Bennett share with her second son, Sammy, 6, and her husband, Russ, a software programmer, Vernick said her decision to create a camp for kids like Bennett helped her avoid feeling “out of control.”

But founding a children’s summer camp, Vernick learned, was anything but a walk in the woods. In fact, it seemed like the opposite sentiment than the one she saw on the smiling young faces typically peering out of camp brochures.

In the months leading up to the 2010 launch of “Camp Bennett,” Vernick faced innumerable legal, logistical and financial problems; staffing quandaries; insurance and safety issues; and the stresses of dealing with parents. She dove into the marathon of organization – months of late nights, exhausting fundraising and countless phone calls. At one point, a licensing issue threatened to nix the whole plan. And while Vernick was juggling details for the second year of camp, Bennett underwent brain surgery. During the hard recovery, there was uncertainty on whether he would be able to attend.

The first year, a fundraising campaign on her personal blog and on Facebook raised more than $5,000, mainly among friends and family for the six campers. With a cost per camper of $3,500, she raised enough for two scholarships.

“I expected little,” said Vernick, who was overwhelmed by the support. After posting a wish list on her blog, a friend arrived with more than $200 worth of snacks, games and art supplies.

Occupational therapist Joanie Hooper came onboard, and volunteers signed on to cover one-on-one shifts with the six participants in the three-week program.

Families from all over California signed up. The first year of camp was held in a rented clinic; last year, with the group rising to nine, California Pacific Medical Center donated space at its stroke rehabilitation clinic. With the cost rising to $4,500 per child, grants and donations fully funded five of the nine campers, and three others were given partial scholarships.

Laurie Strawn, whose daughter Julia, 9, is also a prenatal stroke survivor, was one of Vernick’s early supporters.

“Audrey proved to us that if what you need for your kid doesn’t exist, it’s possible to create it,” she said, noting that the work it took to start Camp Bennett was beyond the scope of most people’s abilities – let alone the parent of two children, one with special needs.

“The best thing was that Julia was among a community of kids challenged in similar ways,” Strawn said. “They supported each other through the therapy with remarkable compassion.”

“As a parent, my job is to give Bennett stepping stones to a healthy life,” Vernick explained.

Vernick is taking a leave from organizing the camp this summer, but Hooper is planning a camp session in late July, possibly at Kidspace in San Francisco.

Despite her much-needed break, Vernick’s thoughts are still on a future for her son and his fellow campers. “I don’t care what the camp is called,” she said. “I just want this therapy available to kids that need it.”

Plus, the campers bonded and established friendships. “Being with the other kids helps them feel OK in the world,” Vernick said. “These kids are just not going to meet anyone at school or in their neighborhood like themselves.”

————–

Name: Audrey Vernick
Age: 44
Residence: San Francisco, Eureka Valley
Making a difference: Launched a therapeutic summer camp for children who suffered childhood strokes
In their own words: You want to do everything for your child whether or not they have special needs. If there is a need, it feels meaningful to know you can make it happen.

————–

http://www.baycitizen.org/blogs/change-agents/mom-creates-summer-camp-pediatric-1/

Hi Everyone,

Thanks to all of you for your interest in Camp Bennett! Unfortunately, I will not be running the Camp this year, but our amazing Occupational Therapist, Joanie Hooper, is running two CIMT camps of her own! You can contact her to get more information. I highly recommend her – she is a gifted and dedicated practitioner who totally ‘gets’ hemiplegia. Flyers for her camps are below.

Thanks, and best of luck to all of you.
Audrey


http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2011/07/24/BAAV1KDHKF.DTL

Here is a message from Isaiah’s mom:

Isaiah blowing bubbles during Camp Bennett 2010

“Last July 2010, Isaiah participated in the first ever Camp Bennett. Prior to the camp, Isaiah’s OT from CCS initiated Isaiah’s first experience with restraint therapy by collaborating with Kaiser. Isaiah became Kaiser’s pioneer child for a trial constraint therapy program. Isaiah wore a removable bi-valve cast for at least 10 hrs per day for about 2 months. This particular trial was difficult because Isaiah was not placed in a group setting. He was mainly at home with me (mom) trying to go about his normal routine with his dominant hand casted off. OT and PT sessions were easier than the home-based therapy setting, but he struggled everyday. Isaiah was progressing, but he was unhappy.”

“Camp Bennett was a totally new and surprising challenge for Isaiah. At camp, he was surrounded by kids that looked like him, ran like him, and had casts like him. The ‘peer pressure’ was amazing for Isaiah. The group/peer setting did wonders for Isaiah’s confidence. He was able to tolerate the cast for the entirety of the camp sessions, without throwing a fit. I believe that it is much easier for Isaiah to participate in constraint therapy if he is able to play with children like him versus being the only child in a medical-therapy setting.”

Camp Bennett is still accepting applications for it’s 2011 Intensive CIMT Camp.

Please email <audvern@gmail.com> if you would like the application packet sent to you.

Some exciting updates about this summer’s Camp Bennett:

So far we have 6 campers aged 4-8 signed up for camp. We are also trying to do a 3-year old group for 3-4 additional children. We are hoping to receive some funding for our program soon, but in the meanwhile donations are always welcome! You can donate through Facebook’s Causes at: http://www.causes.com/causes/481381-camp-bennett/about



I have lined up our enrichment classes and instructors: we will have yoga, music, dance and aquatic therapy. We will also be doing Parents Group on Monday, Wednesday and Friday afternoons which will include parent support and mentoring, IEP training, workshops in various alternative therapies, and a weekly recap of what the kids have been working on at camp.

We also plan to do a weekly soccer clinic, climbing skills, therapy dog visits, and more!


Lastly, here is a message from Isaiah’s mom about Camp Bennett:

“Last July 2010, Isaiah participated in the first ever Camp Bennett. Prior to the camp, Isaiah’s OT from CCS initiated Isaiah’s first experience with restraint therapy by collaborating with Kaiser. Isaiah became Kaiser’s pioneer child for a trial constraint therapy program. Isaiah wore a removable bi-valve cast for at least 10 hrs per day for about 2 months. This particular trial was difficult because Isaiah was not placed in a group setting. He was mainly at home with me (mom) trying to go about his normal routine with his dominant hand casted off. OT and PT sessions were easier than the home-based therapy setting, but he struggled everyday. Isaiah was progressing, but he was unhappy.”

“Camp Bennett was a totally new and surprising challenge for Isaiah. At camp, he was surrounded by kids that looked like him, ran like him, and had casts like him. The ‘peer pressure’ was amazing for Isaiah. The group/peer setting did wonders for Isaiah’s confidence. He was able to tolerate the cast for the entirety of the camp sessions, without throwing a fit. I believe that it is much easier for Isaiah to participate in constraint therapy if he is able to play with children like him versus being the only child in a medical-therapy setting.”

Camp Bennett could use your help!

We need:

  • DONATIONS (to be used for scholarships)
  • THERAPY EQUIPMENT (wish list to be posted soon)
  • TOYS, GAMES AND SUPPLIES (wish list to be posted soon)
  • VOLUNTEERS!

Let us tell you a little more about Camp Bennett:

Camp Bennett is a three-week summer camp, designed as an intensive, therapeutic, play-based group dynamic serving children ages 3 through 8 who have had strokes and subsequent hemiplegia (partial paralysis of one side of the body). The camp providers include: a camp manager (and creator – who is also a mother of a child with hemiplegia), a special education teacher, a licensed occupational therapist and a licensed physical therapist, and a social worker. Others who will be providing services on a limited basis will include an aquatic therapist, music teachers, an adaptive yoga instructor,  a licensed orthotist, and pet therapy.

Camp Bennett uses a Constraint Induced Movement Therapy (CIMT) technique in which the unaffected upper limb is casted to prevent use leaving the affected/weak limb to be forced to work. This is the second year we are holding this camp. Last year every child demonstrated improvement and most had “significant improvement” in their ability to functionally use their weak limb. Our primary goal is to provide camp to as many children as possible as we passionately believe in this approach to treating childhood hemiplegia and to this end we have cut the cost of the camp down to be able to pay for supplies and staff working hours only. We are seeking donated supplies, work space, camp space, and whatever else we can get our hands on to keep costs down for families.

You can make a donation through Facebook’s Causes: http://www.causes.com/causes/481381 (Our non-profit fiscal sponsor is Talking Eyes Media, but all of your donations will go to support Camp Bennett.)

Please let me know if you can help in any way… many thanks!

Audrey Vernick

Founder and Director, Camp Bennett