Wednesday, May 14, 2008

Mother's Week: Vivien Cooper, Founder of the Challenging Behavior Foundation

Theme for this week: Mother's who created foundations or opportunities for their children

I first came across the website for the Challenging Behavior Foundation while reading the wonderful blog titled Mother of Shrek by the blogger many of us in the autism blogger community know as Casdok. I explored the website of the CBF a little and discovered that it was founded by a mother who currently is serving as the chair of trustees for the organization.

The mother, Vivien Cooper, founded the Challenging Behavior Foundation in 1997. Her son has Cri du Chat (Cry of the Cat) syndrome, (which is as I understand not associated with autism) and has exhibited challenging behaviors such as head banging and tipping over tables, etc.

The foundation describes challenging behavior as actions displayed by children and adults with severe learning disabilities that may put the individual or others at risk. The behaviors include actions that are aggressive, self injurious, disruptive or destructive. Further, such behaviors make the use of ordinary community facilities or home life difficult. The difficulty lies in the respective individual's difficulty in controlling their actions, not to mention the inability to understand the consequences of their behaviors. The CBF attributes challenging behaviors to the individual's general inability to communicate.

When Mrs. Cooper's son was first diagnosed she was given a "half sheet of paper," and was to say the least, underwhelmed by the amount of helpful information available to her. She was also dismayed about the lack of opportunities for individuals like her son and sad that the only school that was willing to meet his needs was located more than 200 miles from her home. This meant that she had to make a 500 mile round trip in order to visit her son. As a result of both issues, Mrs. Cooper saw a need and set out to meet it.

In her own words:

"I started the CBF to try and ensure that the information available about understanding and managing challenging behaviour gets to those who need it, those who are encountering it every day. I am also determined that children or adults with challenging behaviour should not be transported hundreds of miles away from their home and families to have their complex needs met.

The message I would like to give to other families is that you should not be made to feel guilty because your son or daughter is the most difficult to manage, or most expensive to fund. You are not alone, and the Challenging Behaviour Foundation is here to support you."

Here are few additional words that Ms. Casdok provided at my request:

"I’ve been a member of the Challenging Behaviour Foundation for many years. Having a child with autism is one thing, having a child with autism and severe, challenging behaviour is another.
Like Vivian I found nowhere locally could cope with my son so I had to send him hundreds of miles away to school. As a parent this is very isolating as you don’t get to meet other parents from the school. So I have found the foundation an invaluable source of support and knowledge.

At present we are putting together some packages to help younger parents to help their children. It is very exciting to be part of this." (Thanks Ms. Casdok!)

My thoughts: I have great respect for both Vivien Cooper and Ms. Casdok for helping other people while also working to help their own sons. I've read through some of the messages posted on the CBF site and saw that parents of those exhibiting challenging behaviors were most appreciative of the CBF's efforts.

Most people posting on the site seemed to be family members who found the information provided to be useful. It's also important to note that these messages did not originate just from England where these two moms are from, but from all over the world. I believe I saw at least two messages coming from the United States. Thanks to Vivien Cooper, Ms. Casdok and the active members of the CBF, the informational needs of these families are being met.


Angela said...

Casdok rocks, doesn't she?

J said...

Yes she does! : )

Anonymous said...

Very well written. I agree with Casdok that having a child with behavioral challenges has got to make everything more challenging. She is an amazing mother and very inspiring. Obviously, Vivien is as well.

Casdok said...