|
Editor's note: Ed St. Clair, along with his wife Liliane and son Andy, have been very active in the SSSA for the past 20 years. Here he shares some thoughts on parenting and disability.
.......Mom's, Liliane included, have spent an inordinate amount of time with doctors and other avenues trying to put a name to their child's condition.
They are to be commended.
I can't' begin to tell you how much effort Liliane put in the early years trying to find out a diagnosis for Andy's (35) problems.
From the time he was 1 1/2 and the Army doctors in Germany told her, "So, he'll never go to high school." and "Be glad you have two normal children and can enjoy them."
Liliane did research and made
countless
calls and
visits to various doctors.
It wasn't
until
Andy was ten that the Colorado University Hospital in Denver told us after three days of testing, "We think he has Sotos syndrome, there are only 110 known cases worldwide, we do not know what causes it, we do not know how to cure it, we cannot tell you what to do. Thank you. Good Bye."
It was another seven years of research before we found the Sotos Syndrome Support Association and went to our first meeting. We were told by Dr. Schaffer that he was Sotos-Like.
All this time, like many of you, Liliane was working and raising Andy's two older brothers.
Not only that, she became involved with school committees on learning disabilities, the ARC, etc.
I think you Moms and a smattering of Dads are really saints. Parents of so called normal kids can't begin to realize the additional burden and effort it takes to raise a "different" kid.
| 
