Kim and Abbie Whitaker during Family Share Time
In addition to Dr. Shaffer's lectures there were various other presenters at the 1p36 Deletion Conference.
Mark Dumdei, a family counselor, wanted to make sure we are taking time for ourselves in addition to being caregivers for our 1p36 Deletion family members. A discussion about how to find good help and involve other family members came as part of his presentation. He also gave us a stress test which most of us scored ridiculously high on. Time to build in some stress relievers into our lives
There was a rotation between clinical exams and a visit with Tonya Ricker, a behavior counselor. She took small groups of parents out and talked about the importance of structure for teaching behavior to kids with disabilities. They are brighter than they get credit for and they will test the limits of what is allowed and we as parents need to be consistent in this. That doesn't mean just saying no all the time but guiding the child to do things he or she is allowed to do and giving praise when they are obedient. She also touched on making sure we're not giving some kind of physical reward like a treat each time the child is obedient. Melanie and I are a bit guilty of this with Whitney and we'll have to do a little better. We're always giving Whitney some chips or something when she eats well. She's come to expect it now and that's the part that's harmful.
Dr. Anthony Perszyk, a geneticist based in Jacksonville, was in charge of the clinical exams. Each child was measured and gave a medical history. This was a major undertaking and this good doctor was there Friday, Saturday and I believe possibly even Sunday morning to ensure he got the chance to spend some time with each patient. The results will be compiled and used to further find ways to help those with 1p36 Deletions. The thing I'm most looking forward to is a 1p36 Deletion growth curve chart. I've gotten tired of always being told Whitney doesn't measure up since the growth chart for typical children is all the doctors have to plot her growth on.
My favorite speakers came during family share time. Various members of the support group spent time telling us about their children and their experiences. It was so cool to see how we've all been fighting the same battles and now we've found each other and we can fight our battles together.