A community resource for pediatric stroke survivors and their families

About

ABOUT BENNETT:

Bennett is 9 years old and attends Alvarado Elementary School in full inclusion. He has a lot of great support at school. He also plays baseball, swims, rides his bike, and takes drama classes. He has a little brother named Sammy and an amazing daddy, Russ. His mom is pretty cool, too.

ABOUT AUDREY:

Audrey Vernick, Founder and Director of Camp Bennett

Audrey Vernick is the mother of a child with special needs. Her 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), hydrocephalus, and seizures (which were ‘treated’ with a hemispherectomy after 8 medications over 2 years failed to control them).

Audrey spent the first 15 years of her career as a photojournalist, author and teacher before giving birth to the camp’s namesake. Her photographs have appeared in newspapers and magazines worldwide, including The New York Times, USA Today, Time and Newsweek.  Her two books, ‘Picture the Girl’ and ‘Unveiled’ use images and interviews to provide an intimate view of the lives of teenage girls and married couples, respectively.

As the parent of a child with cerebral palsy, she has shifted her career to that of an advocate, therapist, caregiver, and parent. Devoting herself to understanding her son’s condition as it relates to stroke, visual impairment, sensory issues, social skills, neurology, occupational and physical therapies, as well as local, state and federal bureaucracies, she is successfully navigating the difficult task of raising a disabled child. Inspired by the progress witnessed at the CIMT program ‘Camp Helping Hands’ in New Jersey, as well as the research of Dr. Edward Taub, she created Camp Bennett.

Audrey is a community activist in the area of disability rights and empowering parents of children with special needs. She was Support for Families 2010 Honoree, where she received an award for her community service work through Camp Bennett. In addition, she received a Certificate of Recognition from the California State Assemblyman Tom Ammiano in recognition to her “unwavering commitment to… the children of our underserved communities.” Audrey was interviewed about Camp Bennett on KFOG radio, and Camp Bennett was mentioned on NPRs Talk of the Nation.

Audrey authored an article on inclusion that was distributed to all families in the San Francisco Unified School District for National Inclusive Schools Week in December 2010 and was interviewed for KALW radio on the topic. She coordinated Inclusive Schools Week for Bennett’s school in 2012, including a 2-day ability awareness event for all of the second and third graders. She facilitates a monthly parent support group in conjunction with a peer group for kids with cerebral palsy at Support for Families of Children with Disabilities in San Francisco. She is a member of the board of the Community Advisory Committee for Special Education for the SFUSD.

MORE ABOUT AUDREY VERNICK (responses to her being honored by Support for Families for her work on Camp Bennett):

“From one parent to another, thank you for being such an inspiration in starting Camp Bennett, and thanks for being a great support and friend at Tuesday Night Parent Group.”

–Eileen Boussina

“I am an OT who was fortunate to be able to volunteer at Camp Bennett. I was inspired and touched by the children and certainly Audrey’s dedication to make Camp Bennett happen!

“Audrey, the world is a better place because of the dedication and hard work of people like you – persevere!”

–Paulette Schafir, OTR/L

“Audrey is an amazing advocate. She is passionate about inclusion and working collaboratively with her school community to create an environment where all children feel accepted and celebrated. Last year Audrey helped fundraise for the AXIS dance company. She wanted to make sure our entire community had an opportunity to witness their powerful message and dancing. Audrey has been supportive to new inclusion parents at the school. She has been helpful and insightful. We are so happy that she is part of the Harvey Milk Civil Rights Academy Community.”
— Christina Velasco, Principal, Harvey Milk Civil Rights Academy

“Not only is Audrey is a truly loving, dedicated, creative, and fun mom; but she puts the same love, dedication, and hard work into her continuing advocacy, family support, and in starting amazing programs like Camp Bennett for families of and kids living with hemiplegia. She was a pleasure to work with and is an inspiration to many and I feel she deserves this recognition whole-heartedly.”
— Kristy Atchison, OTR/L Camp Bennett 2010

“Audrey is the perfect example of a demanding parent, a dedicated parent, a hard-working parent. She asks all the right questions, balances the intellectual and the practical when it comes to the care of her child. She makes doctors want to strive to do their very best every moment of the day.”

— Audrey Foster-Barber, MD, UCSF Child Neurology

“Audrey is a great addition to our community! She not only is an active parent in our community, but she is also an amazing advocate and is my point person to speak to incoming parents about what our inclusion program at Harvey Milk Civil Rights Academy means to ALL children at our school. She helps me plan events around inclusion and has brought us amazing assemblies that is enjoyed by the staff, children and families. Thank you to Audrey and all of her hard work and dedication!”

— Shawn Maceira, Parent Liaison, Harvey Milk Civil Rights Academy

“Thank you Audrey for the great learning experience. I will carry it with me throughout my physical therapy studies.”

–Lindsey Hatcher, PT student and volunteer, Camp Bennett 2010

“I am Bennett’s mobility teacher and have known Audrey for several years now. If I have two words to describe Audrey, I would say she is dedicated and passionate. When Audrey delves into something she truly is passionate about, she doesn’t hesitate to just jump into the deep end. She digs deep into her heart and works endlessly on whatever she sets her sights on.

“She is very meticulous and thorough (in a good way, of course) in addressing all of Bennett’s needs and in assuring that the entire team is aware of what is happening in Bennett’s life so that we can better serve him. Bennett is truly fortunate to have Audrey advocating for his needs.”

— Joanne Woo, SFUSD Orientation & Mobility specialist

“Thank you so much for creating Camp Bennett. The experience was life changing for all of us and it gives us so much hope for the future. Thank you from the bottom of our hearts.”

— Kim, Dennis & Isaiah, Camp Bennett 2010 Camper

“I am very excited for Audrey, a well deserved honor!  Audrey approached me asking for help, input etc.  I immediately answered her call and contacted Amy Smith, OTR and Donna Uzoigwe, SLP. Amy and I had worked the summer prior at Adam’s Camp in Colorado, and we were very enthusiastic about  Audrey’s venture, and thought that something similar was needed in the Bay Area. It just so happened that the founders (parents) Bob and Karel Horney, of Adam’s Camp were in SF and they were able to meet. They are exciting and inspirational and I’m sure they fueled Audrey’s fire.

“Audrey was determined to get the camp going this summer and literally put it all together in 3 months! Nothing was going to stop her! It has been my experience working with children and adults with special needs for almost 40 years, that the most innovative, useful, fulfilling and exciting programs, are one’s which are created and conceived by the consumer themselves; parents, relatives, or close friends.  Audrey proved that to be true when she put together Camp Bennett this summer. I hope that this is just the start for Camp Bennett and that Audrey continues to grow the camp for not only her son, but for the many children whom are waiting to participate.”

— Elaine Westlake, MA, PT, Kids Development Studio, San Francisco

“Audrey told me she was going to create a camp here in the Bay Area for children with hemiplegia. I didn’t doubt her for an instant, but I am amazed at how fast she accomplished so much. My daughter, Julia, loved Camp Bennett. She made great strides physically, and more importantly, she had a terrific time in a play-based camp where all of the kids understood each other’s struggles, helped each other, and celebrated their achievements together. Thank you so much, Audrey. You are wonderful!”
— Laurie Strawn, parent to Julia, Camp Bennett 2010 Camper

“I should have known that the passionate, curious woman I fell in love with 12 years ago would someday turn her attention to another more compelling person.  Fortunately, I too love our son Bennett.  I always knew Audrey would be a terrific supportive mother.  What I wasn’t anticipating was for her to affect such profound changes in the lives of complete strangers.  Having witnessed Camp Bennett and how Audrey has touched so many lives, I will be less surprised next time.

“When we met, I was immediately drawn by Audrey’s curiosity.  She asks simple frank questions that relay her underlying caring as well as interest.  The person being questioned really wants to answer, even when the questions are about complicated, personal and potentially embarrassing details.  I call them “Audrey questions”.  This desire for understanding served her well as a journalist, captured her husband’s heart, and made her the ideal parent for Bennett.

“When Bennett was 5 months old, it was clear there was a medical problem and Audrey set about to find and fix it. Briefly, Bennett had a stroke in-utero due to a malformed middle cerebral artery, preventing much of his brain’s right hemisphere from developing.  To treat his seizures and deal with the immediate medical problem, he would have two brain surgeries, many MRIs, EKGs, blood tests, and examinations. With a lot of luck and Audrey driving his care, the seizures were successfully treated and we could focus on treating Bennett’s other symptoms.

“With hemiplegic cerebral palsy, Bennett has difficulty using his left arm, hand and leg.  His hearing and vision are also affected, particularly on the left.  Between the brain injury and spending so much time with medical staff instead of other kids, his ability to relate with his peers was also stunted.  Again, Audrey takes the lead.
“Audrey became his medical advocate as well as his mom. She learned as much as she could about epilepsy, strokes, stroke recovery, raising special needs kids, integrative play as well as parenting in general.  Working with doctors, nurses, therapists, advocacy groups, other parents, books, journals, the internet and anyone else who had knowledge she quickly became the foremost expert on Bennett’s condition and treatment.

“One of the more successful treatments Audrey found is the Constraint Induced Movement Therapy (CIMT) practiced by Camp Helping Hands in NJ.  The combination of CIMT done intensively daily for several weeks in a summer camp-like atmosphere proved to be a terrific experience for Bennett and inspiring for Audrey.  Working closely with other kids having similar issues, Bennett not only made progress physically, but socially too.  All the kids had similar struggles, they understood each other in ways we can only imagine.  With that ability to understand also came the ability to motivate and inspire, creating a virtuous cycle of progress, accomplishment and bonding.

“Unfortunately, Camp Helping Hands is 3000 miles away from home, putting a great deal of stress on the whole family to participate in such a great program.  Understanding that we were very fortunate to be able to make the journey and commitment for a month every year, Audrey decided she could do more.  Hence Camp Bennett.
“Beginning in late 2009, Audrey set upon creating a local CIMT camp where kids could gather for intensive therapy in a very fun and uniquely supportive atmosphere.  With these two goals, she immersed herself in:

  • Recruiting the right therapists and volunteers
  • Finding a suitable location
  • Planning an engaging three week curriculum
    • a different theme every day
    • activities, crafts and games for the kids
    • special classes (e.g. music classes, dance and yoga)
    • talks for parents on IEPs and alternative therapies
  • Collecting and organizing all the supplies and snacks

“Not content to simply create and run the camp, she also wanted to make sure it was available to all who might need it, soliciting donations which provided scholarships to some of the campers.

“Audrey would have been deemed successful if she simply had met her goals of providing good therapy where everyone had fun and learned how to interact a little better.  So what words can we use to describe meeting these goals and giving at least one child a life changing experience.  Maybe if we understand her experience better, we’ll have the right words.

“One camper had a stroke at the age of 5.  She had been a typical kid, running, playing, going to school, but while swimming one day, she lost control of her left side.  Struggling in the water, they rescued her, but treated the problem as a drowning, not realizing for a day that there was a much bigger problem.  For the next 1/2 a year, she was in and out of the hospital, having major procedures done, and struggling to recover.  Though she was able to eventually return to school, she still wasn’t able to use her left arm.

“She didn’t feel normal anymore, and couldn’t explain to the other kids what she went through.  Nor could they really understand what was wrong, making her feel isolated at a time when she was most vulnerable.

“We’ve all been depressed and confused at some point, but something helps us get through it.  For her, it was Camp Bennett.  Everyday, she was surrounded by people who understood what she was going through and wanted to help her, starting with Bennett himself.  As the camp’s ambassador as well as namesake, he introduced himself as soon as they arrived and helped them find their cubby and get situated.  With a steady flow of therapists and volunteers she also ran through the obstacle course, dressed, drew, ate and played with a cast on the arm that worked well.

“Gradually, it became normal to have had a stroke. Continually, everyone learned together.  Steadily, bonds were formed and physical progress was made.  Eventually, she created a new normal which she can change over time.

“Successful, yes.  How about inspiring, generous, fantastic, phenomenal, life-changing?

“From the day I met Audrey 12 years ago, I knew she was a special person.  Yet, I’m still amazed by the challenges she endeavors to overcome and how much she achieves in the process.  Camp Bennett is her latest example of how her curiosity and passion drives her to create magnificent things for others.”

— Russ Vernick

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Comments on: "About" (11)

  1. Congratulations on getting this going — what a great site. xonancy

  2. Athena Kashyap said:

    I second that this is a great site! It’s going to be good resource for parents with special needs kids.

  3. Congratulation Audrey on doing this. You’re amazing !! Bennett and Sammy have the coolest mom.
    BTW I love that picture of you and Benny ❤

  4. Lisa Bloch said:

    Congratulations and thank you Audrey!

  5. Hi Audrey,

    Laure Latham directed me to your blog. You are doing a great thing. We’d love to interview you on our blog, and see if we can help spread the word and include your camp at http://www.signupforcamp.com. Can you email me? jenny@signupforcamp.com

  6. Dear Audrey,

    I’m the publicist for a new book from Oxford University Press, entitled “Stroke Diaries” by Dr Olajide Williams. Today he was a guest on NPR’s Talk of the Nation and one of the caller’s mentioned your camp.

    While his book isn’t specifically about infant strokes, it does focus one chapter on it. I’d love to send you a copy if it would be on interest. If you’d like to hear the show you can listen at:

    http://www.npr.org/templates/story/story.php?storyId=126560286#
    Do feel free to get in touch.

    With best wishes,
    Jamie

  7. Will you be doing the camp again?

    • 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 the main page of the blog, and filed under CIMT.

    • Camp Bennett is happening in 2013! Check the blog for details!

  8. Hi there,

    Thank you so much for all the work you’ve done. I’ve just found your blog now, my 9 yr old son in Berkeley is left hemi for the past 3 years from a brain injury, exact cause is somewhat unknown. We are at trying to connect with peers facing similar challenges. Is the best way to do this in the Bay Area through the camp? Do you know if its going in 2014?

    Thanks again,
    Camille Watts-Zagha

  9. Hector Gutierrez said:

    hello Audrey,

    Love the work youve done

    Our daughter Andrea, 5 has cp and we would like to giver her cimt. We have tried setting up sessions with Joanie Hooper but she seems to be overbooked. Do you know of anyone else in SF or the bay area that gives cimt?

    Thank you!

    Hector and Alma

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