People First

Let me start off by explaining the name of this blog.  I’m all for “People First” language. . . a “child with Fragile X Syndrome," not a “Fragile X child.”  But this blog isn’t about a person.  It isn’t about my daughter specifically.  I won’t post pictures of her or our family or provide identifying information here.  I plan to stay completely anonymous, because this is really about collecting information, reviewing research, providing ideas, listing resources which may help families with a child with Fragile X Syndrome. . .especially girls with Fragile X.     

Although I will give examples from my daughter’s experiences, education, therapy, etc., in reality I only tell people who really need to know about her diagnosis  (doctors, teachers, etc.)   Most of our family members don’t even know she has a diagnosis.  It is not my place to tell her story.  It is going to be completely up to her IF and WHEN and HOW and TO WHOM she tells her story.  I will not take that right to privacy and confidentiality away from her to ease a difficult situation or “explain away” her sometimes unacceptable behavior in public.  I would rather have strangers think I’m a bad parent for having an occasionally oddly-acting child than share her personal medical information when it isn't absolutely necessary.  Of course, I am very fortunate that I have this option.  I understand that this only works for our family because she doesn't have the physical characteristics or obvious behaviors of a child with an overt disability, such as Down Syndrome or Autism.  Other children's medical issues may be perceptible to strangers and it would therefore not be possible to keep the diagnosis confidential.  I am very grateful to other parents who have bravely opened their lives to the rest of us so that we might learn more from them and their experiences.  And the individuals who have generously dedicated their time and energy to raise awareness through foundations, charities and fundraising deserve tremendous thanks!!

It is my goal that this blog will be a way to explore issues related to girls with Fragile X since much of the information available is more relevant to boys with Fragile X.  I am not writing as a professional who works with children with Fragile X, because I don’t.  I happen to be a Speech-Language Pathologist (SLP), but first I am a Mom. . . the mother of a 5 year old girl who happens to have Fragile X Syndrome (FXS).