Community Support Network

Eastern Massachusetts Fragile X

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  • Is it Autism or is it Fragile X? Fragile X is the most common known genetic cause of autism! #LIUB #fragileX #autism #awareness

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  • Have you heard of fragile X syndrome? If not, you’re not the only one. Most people would be surprised to learn that it’s the most common identified cause of inherited intellectual disability. Fragile X syndrome is also the most common known cause of autism or autism spectrum disorders.

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I’m going to ask you a big question.

This topic comes up over and over again amongst parents of children with special needs…what happens when they are no longer “children?” What happens when FBAs, evaluations and IEPs are behind us?

Some of us dream of an island far, far away from the rest of the world where we could just be with other fragile X families. Some of us dream of creating our own communities and some of us dream of our current communities being fully open, understanding and supportive of our children.

So I’m going to ask you this…if money were no object, what would your child’s adult life look like?

  • Where would they live?
  • Who would they live with?
  • Where would they work?
  • What kinds of activities would be open to them?
  • What kinds of services would be available?
  • What kinds of therapies would be available?

I’ve been contacted by someone who dreams of opening a program for adults with special needs and she wants to know what parents want. It can’t become reality until we dream it, so let’s help her out…