Fragile X

Fragile X.  What a strange name.  What is it, what does it mean?

I felt compelled to write about it after a reading an article last week.  A woman and her husband gave birth to a son. By age two, they noticed that something wasn't right.  He wasn't crawling, he wasn't babbling, he wasn't meeting the developmental milestones that most children reach at that age.  Very concerning.  So they had another child, under the advice of their doctor, who felt that a sibling would encourage development.  But the next baby exhibited the same troubling behaviors, and they knew something was wrong.

Fragile X is a genetic disorder that causes intellectual disability.  It can cause problems with balance, walking, development, behavior, speech/language, and learning.  To add to the complication, many individuals with Fragile X also exhibit spectrum disorders (autism) and ad/hd.  There are also physical characteristics that accompany Fragile X including a large head, long, narrow face, prominent ears, and overly flexible joints.

There is no hope for someone "overcoming" Fragile X.  There is no cure.  The symptoms can range from mile to severe, but generally, the affected individual will remain that way well into old age,  After the age of 40, males with Fragile X will start to exhibit other complications.

I write about this to draw attention to the plight that every special needs parent faces, the problem that looms from the minute you learn of your child's disability and remains with you for the rest of your life:  What will happen to them when I'm gone?

There are such things as adult daycare centers. But the quality and quantity of such places is lacking.  There are a few that are great...wonderful, well-lit places with caring staff.  Places where you can leave your adult special needs child and not feel anxious or worried about what might happen when you're not there.  But such places are hard to find.  In the meantime, what does a parent do, who cannot find someone to take that burden off their hands, for a few hours?  What do I do, in the summertime when school is out and Logan is home ALL day, EVERY day?

You take them with you.  You take them with you everywhere...to the store, to church, to buy gas, to run an errand, to the doctor...anyplace you have to go, they are there, they are your shadow, you cannot leave them at home to play on the computer for an hour.  They are your constant companion. I am really blessed...I have family that I can call on for support when the going gets really tough.  I am so thankful for them and for all they do for me...and I hope if they read this, they understand how much they are all appreciated.  But what about people that don't have family and who don't have anyone to turn to?

It's one day at a time, one hour at a time.  All the time.