Being the rare genetic disorder that it is, there are no websites targeted for strategies on working with children with WHS specifically. Research on outlook is scarce and most of what can be read are comprised of definitions and characteristics of the syndrome. I was craving for more in depth information. The information that does not merely answer the WHAT, but the HOW.
In my years of teaching in special education and with the varied kinds of disabilities that I have encountered, I have not, nor has my husband, met anyone with Wolf Hirschorn Syndrome. I feel that if I have at least met someone I can better picture what lies ahead for my daughter and for us. I feel that it would help my dealing with a child with this syndrome become more "tangible". My pediatrician has not met anyone with WHS. We didn't get lucky either when we asked around in our circle of special education colleagues. The infant specialist and occupational therapist working with her has not met anyone either. If someone can just let me observe an individual with WHS for an hour my mind might be able to concoct strategies that I may be able to employ as a raise my daughter.
My husband and I went online to do a search. I tried getting in touch with other WHS parents through parent support forums, but no one has replied on any of my queries. Signing up for WHS parent websites that require a membership would be my last resort. I did find some you tube videos of children with WHS, which gave me a flickering sense of hope, but I still wanted personal contact... I wanted first hand experience (i mean apart form my daughter).
Perhaps... through blogging about my daily interactions and experience raising my daughter, a newly ordained WHS parent can find the information that s/he needs. information that I was not able to find.
When we met with our renal doctor, he says that he has patients with WHS. Although I cannot have him arrange a meeting for me to interact and talk with these children personally, he did say that WHS children are very similar to children with Down Syndrome. They seem to not manifest major behavior issues and are sociable and affectionate. Most of them do not talk and are physically smaller. He also said that they have mental retardation, and it seems that they are on the lower IQ range compared to children with Down Syndrome. He also added that some of his patients have seizures but most of them have seizures that resolved itself through time.
Having heard this from a person who has personally met someone with WHS was uplifting for me. He was sort of my bridge to other children with WHS. It was my closest encounter via a third-person-kind. (hehehe)