22q11 deletion syndrome, mother, raising a child with a disability
As parents we often struggled with what were appropriate expectations for our son with 22q.11 Deletion Syndrome. Expectations are a double-edged sword. The problem with expectations for a child with a disability, is that it is difficult to find the right balance between motivating your child to achieve the best they can, and setting too high expectations that can lead […]
» Read moreOne of the problems with having a child with 22q.11 Deletion syndrome (a.k.a DiGeorge Syndrome, or Velocardiofacial syndrome) is that even though it is considered to be as common as Down syndrome, very few people have heard of it. This includes the professionals who encounter these individuals on a daily basis in their professional lives: doctors, nurses, special education teachers, […]
» Read moreMost people that know me, know my Mikey as well, and probably know a bit about 22q deletion syndrome. But lots of other people do not, and many are curious about it as well. Often, I run into people that have children with potential symptoms that may be misdiagnosed. It is still frustrating for me that doctors seem unwilling […]
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