Wednesday, May 9, 2012

When Fragile X Hurts

I post about the times when Fragile X is challenging and when it is hard.  I post when great things happen, like when the kids at school are nice and about things we've learned along the way. 

Today I am going to post about when Fragile X hurts.  I am talking about my nephew Kyle.  He is fifteen years old.  He has always been an aggressive boy, hitting and having big meltdowns.  It started when he was about a year and a half or two years old.  His ears would get bright red and he'd bang his head on the wall or slap himself.  Then when my niece Danielle was born, when he was having a meltdown, he'd hit Danielle or poke her eyes or hemangioma. 

Danielle quickly learned to stay away from Kyle when he was angry.  Now that he is fifteen, he is bigger than my sister and when he is in a rage, his strength easily rivals his dad's.  Especially since my brother-in-law has a bad back. 

And while Kyle is a pretty smart kid and is fairly high-functioning otherwise, when he has a fit, there is always damage.  Not always damage to their house, though there have been many busted walls and broken doors.  People are hurt.  My sister has been hurt, my niece, and even my big brother-in-law.  And Kyle still hurts himself.  It is very overwhelming for them all and I think they live in constant anxiety of another meltdown happening.

I feel bad for them and help whenever I can.  I have gone to their house after a frantic phone call for help and tried to diffuse the situation.  Sometimes it works, sometimes not.  When he is calm, he will cry and ask my sister if she is mad at him.  There are some things that frequently cause a blowup.  For example, taking a shower.  So if I am there, or if he is here, I will try to help them out by having him take a shower.  He will always do it for me.  And sometimes he does it well for them.  It just seems to depend on the day and his mood. 

Most of his meltdowns are caused by his disappointment at being told no about something.  He might get it in his head that he wants to go out to eat.  When they tell him they're eating at home, he will go into a rage.  Sometimes they are able to calm him down enough to talk out a solution.  But he can go from being okay to being out of control in no time at all.

Kyle is a really wonderful kid.  He loves Jesus and in church is well-known to say, "Praise the Lord!" or "Amen Pastor!" out loud during the service.  Everyone who knows him loves him.   He has beautiful cursive handwriting and can be very funny.  He plays Special Olympics basketball loves his team.  I think I have compartmentalized this raging, out of control person he sometimes is as someone else completely. 

This is a side of Fragile X that not as many people are familiar with.  I don't want to be painting a scary picture for you if this is not your situation, but it is a reality for some people with Fragile X.  I have gotten permission from my sister before blogging about this. 

They are considering beginning a new drug trial with him.  I am praying that it helps him control himself better.


Kim C said...

I cried when I read this! Kyle has always had a special place in my heart! Guess that comes from being one of those people who had to sit beside him while he was in the head hitting stage.....And his mom, especially, is a treasure! Thanks to you both for putting your life on here to try to help others. Lots of love and prayers sent out for easier times ahead.

Kristiem10 said...

I know, Kim. I can remember you giving him piggyback rides when he was really small. He's always loved you. I hate that things are so difficult for him now. Also hoping they can get something figured out soon for him.

Bonnie@TheFragileXFiles said...

My Zack gets upset and sometimes out of control when he hears "no." I try really hard not to say "no" and instead say "later." If he wants a particular video, I verify what he wants "oh, you want ---?" And then when he says yes, I say "sure, we'll watch that one right after we do ----" or "after the video that is on right now." He's not happy with that answer, but he usually accepts it and walks away, instead of getting angry. It's funny how different, and yet the same, all our kids with Fragile X can be.

Kristiem10 said...

I know what you mean, Bonnie. And they do try not to say "no" to him if they can say it another way. That used to work pretty well for them, but anymore, it isn't working as well. Hoping they can get to the bottom of it and work something out.