Fragile X Syndrome

Fragile X syndrome is the leading inherited cause of developmental delay and cognitive impairment.  It occurs in about one out of every 4000 males.  (For more information visit the National Fragile X Foundation.)

Why am I telling you this?  Our middle son Mark was diagnosed with Fragile X Syndrome when he was 2-1/2.  Although he is almost nine now, in many ways he functions at a younger age, especially in his language skills.

I suppose I could write about how Fragile X Syndrome affects our daily lives, and how things are different as a parent of a child who has special needs.  But Mark is who God created him to be, and Fragile X Syndrome does not define him any more than diabetes defines someone who has it.   So, Fragile X Syndrome doesn’t AFFECT our daily lives, it is part of our lives, part of who we are as a family; and yes, it makes our lives different from what some would describe as “normal” or “typical.”

For example, we spend over three hours a week (nearly five if you count driving time and getting everyone ready to go) at therapy appointments: occupational, speech, and physical therapy.  This means that we don’t do all of our home school at home.  It also means that we can’t be quite as flexible with our time and we may miss out on some activities that we would otherwise have time to do.

We seldom do things spontaneously.  Fragile X Syndrome typically causes anxiety and sudden changes to routine often increase anxiety.  Mark usually handles routine changes–especially if it’s something fun–better than what I have heard is typical for people with Fragile X Syndrome.  (I think this is partly because he knows that wherever he goes or whatever he does, the rest of the family will be there.)  When we do something out of our normal routine, we usually have to limit it to one variation at a time (i.e. run only one errand on our way home) or Mark gets overwhelmed.

I would list other ways that having a child with special needs makes our lives different, but honestly this has been our normal for a long time and I don’t really know the difference anymore.  God has blessed us with four children who are each special in their own ways.

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