CFS Home Page
CFS Locator Index
CARD Home Page
Institute Home

[
PREVIOUS PAGE] [NEXT PAGE] [INDEX PAGE]

Mark
"Sandi and CARD have really been there for us when we were confused and didn't know what to do. They have made a difference in this little boy's life."

-Kitty Adams


Mark touches the hearts of everyone he meets. He's a beautiful, loving, very active 6 year old who is adored and embraced by his family and friends. Mark has Fragile X Syndrome which can have physical implications as well as behavioral. The behavioral problems, as with autism, can be some of the most serious problems for individuals with Fragile X. There can be a lack of functional communication, the inability to have expressive language, marked differences in social interaction and an inability to play jointly with other children.

Our family is greatly affected by this genetic syndrome. Mark's mother and grandmother have mental retardation because of Fragile X which means the family needs a lot of support to care for Mark. My husband Don and I began caring for Mark, his grandmother, and one other sister, all who have Fragile X Syndrome, 14 years ago when our mother died.

We believe that being cared for by family members is the best possible place for them. We love them and are willing to provide and care for them, but it has changed our lives in many ways. We no longer have the freedom and privacy that we once enjoyed, but we have peace in knowing that we are doing what they need. It is often difficult to find services that allow us to continue to care for them.

We have two male cousins, in their forties, who have Fragile X and live in institutions in other parts of the country. They did not have the benefit of early intervention programs and therapies that Mark has. Our hope for Mark is that he will have a different outcome when he is an adult. As a family we believe a good future is possible for Mark but we feel we are in a battle against time in order to help Mark and to make sure that we do not miss something along the way.

Armed with the knowledge of Mark's condition at birth, we began his education at 5 months. He started early intervention at the United Cerebral Palsy school where he received therapies. Jamie Johnson from USF EIP and Joyce Strickland from Positive Parenting began helping us with Mark's behaviors.

Mark displayed serious behavior problems at age three when he entered a center based school. Joyce told me about CARD and I called them for help. Sandi Locklear responded. She came to our home as well as to Mark's school to do an observation. We feel this has changed the course of Mark's life.

Sandi was the liaison between school and home to help insure everyone was doing the same thing about Mark's behaviors. She wrote a behavior plan to communicate Mark's needs to us and to his teachers. In time, we were able to move Mark to a more inclusive program at another elementary school where he had contact with a more typical environment. We are very satisfied with the results and believe it was the right move for Mark. Our only regret was that we didn't do it sooner.

The future for Mark looks brighter every day, and we have a great comfort in knowing that there is an organization like CARD that we can call upon for help when an unacceptable behavior presents itself or we have a problem with his education. This helps us to react appropriately and have the knowledge that what we are doing for Mark is the best thing. Sandi and CARD have really been there for us when we were confused and didn't know what to do. They have made a difference in this little boy's life.

Written by Mark's great aunt, Kitty Adams.