CHARGE Syndrome Canada Newsletter Summer 2008 Vol. 1 No.16 © copywrite |
MOBILITY OPPORTUNITIES VIA EDUCATON (M.O.V.E.)
Past Edition of the Newsletter
Social Differences in forming friendships - an Autism link?
Most of the families with CHARGE have expressed some of the same concerns when looking into the future. What quality of life will my child have? How independant will my child be? What can I expect in terms of education? Will they go to college? What about friends?
Needs of the children change, especially once critical medical issues have been addressed. Parents agree that their desire is for their children to become "contributing members of society" -- no matter how medically involved their children are or what developmental milestones they may have missed. And they want them to have friends.
One parent reported that the most difficult thing for them was the lack of birthday party invitations their child experienced throughout their school years. Another felt that if they hired someone to come and "be a friend" to their child, it would enhance both children's experience, but feared that one day their child would find out that the relationships they facilitated were not genuine.
Nancy Harthshorne talks about how they developed a "Circle of friends" for Jacob. Through this facilitation process, the family has been able to facilitate successful friendship experiences for their child, and provide an enrichment of social experiences for him.
Yet other parents comment that there is "just something different" about the relationships their children develop with others. "They may talk as of they have many friends, or discuss doing specific things they are doing with others, but there is a lack of connection".
There have been several studies that have found a relationship between some children with CHARGE and autism, but most professionals are careful to call it "autistic tendencies" or "autistic-like behaviour". Many characteristics can be attributed to sensory loss, or be due to the language or communication delay. So it is a difficult diagnosis to make. Despite this, there are those who report clinical Asperger's Syndrome, which is on the autism spectrum.
This video which was part of a CBC news story helps explain Asperger's in a child without other disabilities. By having an understanding of the basis for the child's unique behaviour, strategy and resources can then be implemented, goals can be developed, and stress can be reduced when the cause of specific behaviour is understood. Changes to the environment further help reduce stress, both for the child, his peers, and for the development of more depth and understanding in family relationships.
~ Report by Ann Gloyn, Education Specialist
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