Tuesday, August 23, 2011

An Important message for the parents of FX kids

I know I'm starting from the beginning of Cody's life, but I need to say something that I feel is so important, so I'm jumping ahead to the present time real quick......  For those of you with a child that has Fragile X Syndrome and need to know what to be aware of as they grow to adulthood, please read!
  When I found out Cody had Fragile X, the first thing I asked the doctor was how long will he live.  I thought maybe it was similar to Down’s syndrome, in which their life expectancy is much shorter than the normal human being'.  And really (not trying to go off the subject), who truly is normal anyway, right?  The good news is those affected with Fragile X Syndrome can live just as long as everyone else.  The bad news is many don't make it to old age due to accidents.  Yeah that's right, accidents.  Here's an example.  Remember John Travolta's beautiful son Jet, who died a couple of years ago?  Well Jet clearly had Fragile X, he had all the features and distinct behavior, just like Cody. Unfortunately, due to their religious beliefs as members of the church of Scientology, the family blamed his condition on immunization shots as a baby.  You see Scientology doesn’t allow those disabled at birth to belong to the church   I'm sorry John Travolta, but what a stupid religion. Anyway, Jet died from falling in the bathroom during a seizure, and hitting his head.  Gosh that was so sad to hear about, and so hard for his family to deal with.  But the thing is, as FX teenagers get older they want to be more independent.  Not like driving a car or going to a job in the city or going out to the bars.  Instead, they don't want you giving them a bath anymore or even to come in the bathroom.  And that sucks, because I don't even know if he uses soap or wipes his butt. I always had to do it until I was let go from that duty two years ago.  Then Cody decides he's going to ride his three wheel bike around the neighborhood, but all by himself, no one is to follow him.   And it’s a tough call on us parents part to allow this to happen.  Remember in the movie “What’s eating Gilbert Grape’” when Johnny Depp left his brother in the bath?  He thought he’d get out by himself, because he knew the routine.  The next morning he returned and Gilbert had almost frozen to death. So the key is to never assume they can do things on their own.  Yes, teachers and doctors may tell you to stop babying them, but from my experience, it’s protecting them.
 Which leads me to what happened last Thursday night?  It's been a few years since Cody had a meltdown in a public setting.  Meijer's use to be his favorite place to flip out and I will discuss those times someday down the road.  Right now I just want to get the point across to anyone out there with a child like Cody, you should always be on High Alert. Right now make this promise to yourself and to your Child!

Last Thursday night, Cody and I went up to CVS drugstore to pick up his medicine and he seemed to be happy looking around for something to make me buy.  When it was time to leave he became agitated, because he hadn’t finished looking around the store.  I wasn’t in any mood to hear about him needing something for school.  He has everything; he just wanted to spend money.  I could tell he was frustrated, so I figured I should just give in to whatever or he might flip out. I know it’s not a good way to do things, but I knew the consequences from many times before, it wasn’t going to turn out good if I didn't give in.
As the time went on I realized Cody wasn't about to leave, and I was in panic mode, because he was getting louder and aggressive. He’s 6’3” and over 200 lbs. so the days of carrying him out of the store was no longer an option.  It was that kind of situation that starts off semi- bad, and if it is not resolved it gains momentum until there is a chance he may get hurt or the cops might be called in. So I'm apologizing to all the on lookers around, because he's yelling in the store "Slut, I hate you Mom." Nice kid, did I mention how much I Love him?  He positioned himself near the perfume and nail polish aisle, so I knew he meant business.  He wasn’t going to leave and if I were to force him, all the perfume was going down.  Once Cody’s psychologist told me if things became bad in a public area (such as a store) I was to walk out, because Cody feeds off my emotions.   So I decided I would try that approach, hell nothing else was working.  Cody was having a "SPELL," which is what I've named it over the years, only because it's as though he has some other force controlling his mind.
As I walked out to my car, Cody moved to the entrance, and the electric doors were opening and closing non- stop, and he's screaming “F**K YOU, I hate you Mom, just GO."  And I'm thinking Thanks Frank (our neighbor when Cody was younger) for teaching Cody how to say Fuck every which way possible.
  Then just when I think he's coming to the car, he turns left and runs up the hill to the busy 4 lane  State Road in front of the mall. . OMG  Well he doesn't  answer and I see all these people watching, some talking on their phones, probably calling the cops or taping the incident for all to see on  YouTube.  Seems as I would get a little closer to Cody he walked more into the middle of the lanes, and really what was I going to do if I got a hold of him?  Put a leash on him, or tackle him down? lol  Really all I could do was wave at cars to go around him and pray for very alert drivers.
It got to a point where Cody even began to jog, which he rarely does. Not to speak lightly about what was going on, I do need to mention how impressed I was at how much get up and go he had.  Not the Cody I know.  Finally, I had no choice but to tell Cody, I was going to call the sheriff if he did not get out of the road, which usually works when I can't get him out of bed for school.  But this was a different type of situation, he didn't care, he just continued to walk. Cars were coming at him going about 50mph, and Cody seemed unfazed by it all, and what's worse, the people watching did just that "Watched" which really troubles me to no end.  What’s wrong with people?  What's become of Mankind?  Our species will never move forward if we continue to just look out for ourselves and view others in trouble as entertainment. Sure, not everyone behaves that way, but that evening for about 20 minutes on the busy four lane State Road, near the CVS parking lot, that was my reality. Just had to say that, and I'll leave it at that!

 Finally Cody decided it was time to wrap things up. He got off the busy road and headed back towards the car.   After a few fake attempts he reluctantly plopped down in the back seat , and as his final act he grabbed my cell phone, while his Dad Phil was on speaker phone and threw it at the window. He did apologize all the way home and cried a little. At least nothing happened to him, Thank God!

 As a final note,I tend to want to forget about this kind of fearful stuff, but that's basically impossible.  My concern for Cody hurting himself or someone else at anytime is a permanent fear, but it keeps me on my toes. I always visualize some rookie cop, pepper spraying him, then putting Cody in a full Nelson,then putting on handcuffs and taking him to city lockup. I wouldn't be there to help, because the cop's partner shot me down for attacking the cop that was hurting Cody.  Believe me, this could happen.  I promise to talk about this subject in greater detail as Cody's story continues. And just so you know, with all incidents (which are really only a handful) it seems a switch has turned off in Cody's brain, not because of Rage or Anger, more like frustration and confusion.  This time I even considered he might be having a seizure, even though I have had him tested and he showed no signs of ever having one.  And so for the most part I would say Cody's "Spells" are not intentionally done.  He is unable to just walk away from what troubles him, unlike a "Normal" abusive male Cody's age, that is well aware of what sets him off, but continues to beat the crap out of his 90 pound girlfriend, because of jealousy or something stupid like that, and has no remorse.
  I have accepted the fact I will always worry for Cody's safety, since it's part of Fragile X. Oh and yes it has taken a toll on my sanity, but come on, doesn't everything we obsessively worry about make us one step closer to craziness?  And still the beat goes on!  

***Update....It's been over a week since Cody's episode.  I have determine what went down was from mental exhaustion.  He had just returned to school from summer break that week, and his sleep schedule went from staying up late and sleeping in, to going to bed at 9:30pm  up at 6:00am.  I know the two nights before this went down I could still hear him talking to himself, and making his Eeeeeee sound way past midnight.  Now, since his  sleep schedule is back on track he seems much more with the program.  Let's hope it stays like this!


  1. Are you sure that keeping him with you is the best option. What if he hurts you, then what? It sounds like he has a lot of energy to burn; wouldn't it be good to get him involved with others like him? Sometimes a simple exercise program with goals help even normal people become focused and works out their frustrations. Just a thought. This is a fascinating story, Gidget. I look forward to more.

  2. What Cody did was unexpected as I mentioned in the story. You do have a good point about him hurting me, it has happened. But there is no way I would ever have him be anywhere but with me and his sister and brother, and 2 dogs. I figured out possibly why he flipped out at the store last week. Cody had just gone back to school the day before (he goes to high school until he's 22), and he was so tired, but insisted on going with me. All summer he slept in til noon or later and stayed up till about 1:00am. First time ever he has switched his sleeping pattern. Now he's back to getting up between 6:00 and 6:30, and then in bed at 9:00. I think he was dealing with lack of sleep the first 2 days of school, but he's a whole lot better this week. I first thought he was having a seizure, so I hope I'm right about him just needing to get back to his sleep routine.
    As far as being involved with others like him, well that's somewhat hard to explain. Do you have a child that has Fragile X Syndrome? Cody has his friends at school, but he doesn't want to hang with them any other time. He's been in special Olympics basketball ( they won in their age group), and he's done volleyball and bowling. He has one of those bikes that have 2wheels in the back and one in the front, which he rides everyday. He's really not a hyper kid at all. He really likes being around normal people, and he gets really attached to them if he likes their company. My ex-boyfriend and Cody were really close for 10 ten years until we broke up last year and he moved away, so i worry about that loss. And his friend Matt from school, who he had been with since kindergarten died last year, and he really misses both of them. The best part about Cody is that he is full of Love, which brings out the best in people he comes in contact with. Remember a routine is very important for Fragile X kids. Stepping out of their routine is just way too hard for them to deal with,and that leads to over stimulation, finger biting, and even fits of rage. Even medicine can't control the situation, like the other day. I guess I had to just be reminded!

  3. My daughter lives with her dad and she is 13 his wife has a child with FX. I don't know to much about it so i was worrying when they let her stay home and babysit him. He is about ten years old. Should she have some kind of training? Should i be worried? Would you please email me to bixlerbeverly@yahoo, thank you