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!

Denial, Depression, and Dilemmas.

   Sometimes denial can help protect a person from misery, sadness and depression. To me denial was my best friend. It went with Cody and I everywhere. I thought being in denial, would keep all my hopes and dreams for Cody alive. I mean he was going to play pro football, and get married and give me a bunch of Grandchildren. This was still very real, since the only person that thought Cody didn't seem right was that babysitter.
   Don't get me wrong there were somethings I thought were different about Cody that didn't seem to jive with the other babies his age. For example the way he played with his toys. He really had little to no interest in playing with them. He mostly would just put them in his mouth. I contributed this to teething, but it went way beyond that. He would have whatever toy, in his mouth, sometimes shaking a bit when he would clinch down on it, his eyes were cross or going side to side, and he would make the Eeeeeeeee sound. This believe it or not, made him happy. It was also evident he was very much in his own world, or alternate universe.  Physically he seemed normal except for his droopy eyes, and he always had dark circles under his eyes, even though he had plenty of sleep. Everywhere we'd go, someone would point out how sleepy Cody looked. The grocery lady would say "looks like you have a tired baby that needs a little nappy time" or " oh is your baby sick?"  I always responded with the excuse "he has an ear infection" or just agree with whoever and skip the subject.
    If Cody was around friends or family (on his dad's side), I would constantly ask for reinsurance.  For instance, "hey he's smiling and giggling that's normal, see there's nothing wrong with him, right?"  Usually, I would get a positive response, which made it so easy to stay in denial, until finally one day someone decided to not agree.
I had on several occasions brought Cody to meetings at work or to get my paycheck or see the schedule, so for the most part everyone from work had been around Cody.  They all heard the story about my former babysitter telling me Cody was possibly Autistic, and knew how much it upset me at the time, so no one was about to express their concerns about Cody's behavior.  Well I was wrong.  Our head foodserver, who I had known since we opened the restaurant in 1984, was holding Cody, and said "Gisele, have you had Cody tested to see if he may be mildly retarded?"  She went on to say, she had worked with mentally handicap kids at the YMCA, that had the same characteristics as Cody, and I really needed to have him evaluated ASAP.  In my mind, I was thinking " Fuck you and your herpies, cause you've slept with every guy that works here, Bitch, what do you know?"  Really, I did think that when she expressed her concerns, which showed my immaturity at that time.  But with a smile and a thanks for the advise I told her as soon as I got home, I would make an appointment with Cody's pediatrician, and request whatever tests they do to check if a baby has mental abnormalities.  "Had to prove that Bitch wrong calling my baby retarded," I said to myself as I drove home crying.  After putting Cody down for a nap, I convinced myself once again he was fine, no need to call the doctor.  Instead I rolled a big fat doobie and got high.
Sidebar....I don't recommend using any recreational drug to escape reality like I did.  It was 1991, and anti-depression medicine just began to surface, and insurance didn't cover most of them, so I self medicated myself.  I would have done things so differently now. Remember, besides the obvious Love and Protection,  children also need a parent that is mentally strong and able to make responsible decisions. Who's going to be there for the child if the parent needs help kicking a habit, or goes to jail.  I was lucky to realize this early on and probably avoided something far worst, and I thank Cody for that.  Although I have to admit it did help me get through Barney and Blues Clues.  If by chance you know someone who is dealing with a drug or alcohol  addiction and they are raising kids, don't look the other way, do something!


Next Post..... Let the tests begin!

The anger stage......

I have somewhat of a  keen memory of events that have happened throughout my life.  Some people are born double jointed, or can flip their eyelids inside out (gross), others have extremely high IQ's, or a  photographic memory.  The list goes on.  Myself, I can remember many details of my life as far back as age 2, including what I was wearing. I say this so you will understand, my story is not made up.  I may at times get off the subject of fragile X, and maybe speak about myself more than Cody, and if this troubles some of you I am sorry.With that being said,  I feel it's necessary to also explain what I was going through and what choices I made, in order to make Cody's life fulfilling.  If you are reading this and are disappointed I haven't talked about what kind of Medicine he takes or what FX kids eat or where to go for financial assistance or who's a good doctor, or about guardianship, I will cover all of this as well as other questions you may have. But if you need answers now, just email me, and I will help you.  OK
So now back to the story.. .......The night of the babysitting fiasco, triggered an anger inside of me that I will never forget.  I believe it was the start of the loneliest and most frustrating time of my life. I wanted so badly for  someone to tell me things would some day get better, but it was very much the opposite.
  What happened to the book the sitter told me to read?  I had the book in my car the whole next day, and instead of reading it, I began thinking of ways I could shove the damn thing up the babysitter's ass.  Isn't that terrible?
Sidebar....., .  It seems I was let down by those that I should have been able to count on.  At the time Cody's dad and I were still married, but since we were in the process of getting a divorce, he made it clear he was no longer responsible to help with any of My problems.  And by the way, his attitude has never changed much in the last 20 years. I don't know how many times I have heard from Phil, " you wanted the divorce, so Cody is your problem to deal with."  Oh and my favorite, he would say over and over, "I'm not your babysitter, I have a life, so figure it out yourself."   Who was he fooling, he knew something was not right about Cody, and he didn't want to deal with it.  And why would I even want him to be around Cody with that attitude, let alone be  married to someone who referred to being with his son as babysitting?  I have to say any couple who has a child with special needs, and continue to stay together happily, should consider themselves  lucky.  It's very rare, and really shows so much love and devotion to their child, as well as each other.

I wasn't looking forward to taking Cody back to the sitter's and putting him through another night away from his home, but what else was I to do?  As I pulled into to her driveway, Cody went hysterical.  I hated this for him.  He didn't deserve being stuck here in an unfamiliar location, plus I had such an uneasy feeling about leaving him.  What made matters worse, no one answered the door.  I was already late for work, so I decided to just go in and see what was going on.  Finally the son of the sitter came into the room and told me his mom had to go to the hospital for a family emergency.  He assured me she wasn't going to be gone long, and that he was watching the kids till she returned.  I guess the other children  were playing outside in the backyard, who knows. So I reluctantly agreed, but felt uneasy about leaving Cody there. Thing was, I went 9 months carrying Cody.  Loved him more than life itself, yet I just left him with some high school kid, I didn't even know, and this kept going through my mind as I drove to work.  I was about half way there when I decided I needed to go back, so I did a U-turn and floored that 79' mustang, because I made a mistake leaving him where I did and he needed to get out of there.

Again, no one answered the door, so I walked in figuring they were out back.  Thing is I didn't see anyone in the back, and it seemed no one was even home.  Then I heard a faint sound coming from behind the couch at the other end of the room.  I knew it was Cody, who just the week before  started making a peculiar Eeeeeeeeee sound.  An sure enough, there he was sitting, looking at the wall, and eating his poopy diaper.  My God that sight was enough to do some Karate chops to that idiot high school kid's balls, where ever he was.  Cody had a poop beard and mustache dripping down on his face.  I basically grabbed  Cody and all his things, cleaning his face on the way to the car, and got the hell out of dodge. Strange that I never did hear from the babysitter, except for a note a week later, she put in my mailbox, asking for her book back. Sure I returned her book, but only after I had read it enough times to realize everything in the book about Autism described my precious baby Cody.  It's also when I knew I could not go any longer ignoring the fact Cody did have something wrong with him mentally. And it was the beginning of a lot of changes in our lives!