Testing 1-2-3

When I think about the first year of Cody's life, I realize he wasn't the only one taking baby steps.  Not that he was walking by himself yet, but he was trying.  Myself, I was doing everything possible to avoid the inevitable, but secretly  I was building strength to except that maybe my precious baby was not going to grow up normal.  There are so many aspects with fragile X that completely blow chunks.  The first thing is how completely normal a Fragile X baby looks and acts.  It's as though God plays a mean trick on us parents.  Well that's how I saw it then.  Now it's the least of my concerns, after all many babies are born freaky and turn out just fine.  I remember a relative who had a baby that I could hardly look at for fear I'd turn to stone, and she eventually grew out of it.

I decided to start with Cody's eyes.  His eyes were crossed mostly or just a blank stare.  What was he thinking, why wouldn't he look directly at me?  I made an appointment with a child optometrist that was highly recommended and saw her the following week.  Three things Fragile X babies hate right off the bat.  Their eyes bothered with, teeth or mouth area touched, and SHOTS.  There is another, but will explain later.
Shit there are a list of things, but these are the first of many others.   (to be continued)...

13th International Fragile X Conference in Miami

 The 13^th International Fragile X Conference in Miami, Florida July 25– 29, 2012

For Information and Updates click here!

Cody at 10 Months

Around the time my child Cody was 10 months old, the times that he behaved like all the other babies his age became few and far between. Now what?  I had a very long list of all my concerns, and it made me physically sick each time I had to write down another abnormal behavior he was doing.  Around this time I had a regular babysitter name Jennifer who worked with me at the restaurant.  She was 19, going to a local college and living at home, so it was very easy to have her come to my house and watch Cody.  Jennifer's major in college just happened to be teaching special ed. kids, so eventually I had her keep a journal (while she babysat) of Cody's behavior.

Again I want you to know it was 1991, twenty years ago.  Back then if you went to the pediatrician   complaining about abnormal things your baby was doing, right off the bat, they weren't seeing it.  Cody was always good at the doctor visits, and me, well I looked like a Mom with Munchhausen by Proxy Syndrome.  And for the record, I was the farthest from that.  I wanted no attention on me. I had no interest in anyone's sympathy (and still don't) but my bitchy step-mom (a nurse)  believed I had this serious problem and I needed to find me a counselor, because Cody seemed just fine to her.  Well at least the 2 times she saw him since he was born he did. I never listened to her anyway.  At first her advice sounded ok, but after a couple days, I was like, screw her, she's just an old bag of poop from the Great Depression, and knows very little about babies.

There was not a day that went by Cody didn't throw up.  I did have him eating solids, such as jar baby foods.  I felt so bad forcing him to eat food he clearly hated and as soon as I put him in the highchair it was retaliation
central.  He would start biting the side of his index finger (Jupiter), and then begin crying and swinging his arms, knocking the spoon out of my hand, grabbing my hair, spitting whatever got in his mouth right back at me.  Not sure if this was how most babies operated, but who would have more kids if this was the next step? I hated it!  So I tried everything. Cute spoons, straws, even those syringes(without a needle) used to give medicine, and the outcome was always the same, "throw-up" and a very upset baby.
Things were not going well, so I decided to try Ensure, (vanilla) and for the most part it worked.  Cody was much happier and he was getting all the nutrition he needed. I was so proud of myself for coming up with this idea, but with all great ideas there can be obstacles that arise.  Cody stopped pooping.  That's right no deuces, number 2's, dumps, whatever you want to call it, he was constipated and miserable.  By about the sixth day I took Cody to the Emergency Room, because I was afraid he was going to rip something from trying to push so hard. They wrote some laxative prescription, which was sure to help, but he threw it up before it even made it down his throat. I really didn't see too many options left, since now he was going on his eighth day without a bowel movement. Finally, I decided to try putting mineral oil in his juice hoping that it might work, and luckily Cody managed to keep it down.  A few hours later Cody was working really hard pushing an grunting, almost like he was having a baby.  Whatever was going to come out was going to be big, and may cause some serious damage.  When I laid him down to check his progress I saw poop the size of a baseball trying to make it out of a tiny hole. Cody was giving me a look as though I had Carte Blanche to help remove this painful ball of poop any way I could!  First, I rubbed petroleum jelly all around the opening hoping that would work, but it was just way too big. I think at this point I was crying hysterically, and I grabbed one of Cody's baby spoons and started to dig chunks of poop out. I was able to whittle it down to the size of a golf ball, and with one big push  Cody gave birth to a hard green yellow round disgusting Shadoobie. He was so relieved he giggled and fell asleep, and myself, I wanted to take a picture of it.  I know it sounds gross, but if you have a child with Fragile X Syndrome, there will be many poop and fart problems and stories yet to come! In fact feel free to share them, or any story, on my blog as a comment if you want!

Guilt

This is not about Fragile X, but I have to say something that really bugs me. I was at the park tonight with one of my kids and dogs and found an expensive cell phone. After figuring out how to find a contact I called and got the Mom and I could tell she was pissed about something. I told her we were at the park in the neighborhood and she said she was on her way down. About 5 minutes later she arrived with her son and I gave the phone to the young boy and the Mom said thanks, they drove off and I went back to walking my dogs. Unfortunately when we returned to the car, it was splattered with eggs. So the moral of the story is Most People Suck!

Which leads me to my next post about Cody..........Guilt?

I haven’t really written much for a while, and I’m sorry! I really have so much to write, but it’s very difficult, when so very few people are reading my blog. I started to think about people out there that take care of someone with Fragile X Syndrome. I seriously doubt they have time to search for my blog, since it’s almost impossible to find. And for those that do accidently come across my writings, I do sound a bit angry at the world, cynical, and narcissistic, with a dash of hatefulness in every other sentence, and I’m going to say, you are probably right. I get tired of being nice to everyone, and my blog is where I’m going to speak my mind.
For starters, I’m shitty with my generation, "the baby boomers." Although we have the best excuse for being assholes, (our parents), why do we have to repeat? Our children, whether they are mentally handicapped or incredible geniuses, they are this earth's very last hope to be a better place. Yet all around me, I see half ass parents putting their children last, and ignoring serious issues their kids obviously need help with, and sitting by watching our world fall apart rather than speaking out for change. Our legal system is outdated and more corrupt than anyone can ever imagine , but those that have tried to challenge the law hit road blocks in every direction. We elect our government officials for all the wrong reasons. Who cares if there are gays in the military,or if they smoked pot when they were in college! What are they going to do about Peace on earth damn it! Our environment is so polluted with chemicals that it may very well be what is causing us to be so ignorant. Don’t get me wrong, I do appreciate living in the U.S. as far as freedom goes. But come on it’s just like never leaving High School, still continuing to let the dumbass jocks and cheerleaders and rich brats run our country and leaving those with far better abilities to change our nation and world to sit in the stands. It makes me sick. And if we speak out or “rock the boat,” we are looked down upon or held in contempt, or thought to be crazy.
You might ask what does this have to do with Fragile X Syndrome? We’ll I’ll tell you, and I don’t really care if you agree or not, bottom line…..I’m right! The God I believe in wants our world to last, yet he see’s us destroying everything good he created. Seems sad to God we continue to destroy our earth and allow evil to flourish, even control our lives. We are all guilty of this, except for our children. And those that are mentally challenged should be considered heroes in my book. They volunteered to be born this one last time to show the world how precious life is and to not take it for granted. If you had a child like Cody, you would want the world to be safe, and at peace, free of evil people around every corner (I would hope this would be the case for all children, but No). So, I truly believe as time goes on more and more babies will be born with mental difficulties, and from the love we have for them, we as people will demand a better world to live in. It’s the only way I can make sense of what is happening and why there are so many children like Cody!! But my question is, will anyone listen and take action before it’s too late?


Read it from the beginning

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!

The Babysitter cont......

It's weird how throughout my childhood and early adulthood, I had encounters with children with special needs.  Early on I had to endure piano lessons with a teacher who taught classes in his small house.  His 4 year old son was clearly out of control, which made my classes very difficult and unproductive.  It would start off me playing a few scales and maybe  a song my teacher assigned the week before, and the rest of the hour listening to my teachers son screaming, breaking things and running around like a wild animal.  I'm not sure what I hated more, the kid or piano lessons, but I wasn't about to tell my parents.  They would have pulled out the lecture about I shouldn't be a quitter or not to use an excuse like his son, when in fact I never practiced at home.  Either way, I had to teach myself, which was playing by ear, and after 2 years of pulling it off, I finally found my escape by joining the swim team, making it difficult to do both.  I always wondered if my teacher ever copped a clue his son was autistic or had Fragile X.  I couldn't believe all the excuses he used to justify his son's behavior, and figured how stupid was this man.  In high school, I was everyone's favorite babysitter.  Sure the kids loved me, but I always cleaned the peoples house too.  Just wanted to please everyone I guess.  The family behind our house had a 5 and 8 year old boy and girl.  I made the mistake of organizing their cabinets and refrigerator and cleaning their kitchen so good, that I was the only sitter they called.  Both kids were messed up.  The youngest was so cute, but still wore a diaper, and the 8 year old bounced off the walls.  I found it baffling how either of the kids could go to regular school and no one picking up on their hyperactivity.  Later I found out their parents were in denial and refused to put them in special education.  I thought how awful they were to ignore their kids difficulties and make so many excuses for their behavior.  I made about 2 bucks and hour from them, so when I found a real job at the mall, I had to say goodbye to the babysitting world.  Something I hated anyway, and would never want to do again.
Getting back to meeting with the potential sitter for Cody.  It was a very hard for me to imagine leaving Cody alone with a stranger.  I met with her on a Monday, with my long list of excuses why he acts this way and does strange things.  I blamed everything on me, or my dogs or his dad or the temperature in the house, and his constant ear infections.  Those ear infections helped fuel my denial, which was in full swing at the time, and really worked well for those who had questions about Cody's behavior.
The babysitter, agreed to watch Cody, that coming Thursday, which seemed so far away from Monday, and I was thinking the world could end before that day or I could win the lottery and I wouldn't need her. Well that never happened, so I gathered up all of Cody's things, which was everything but the kitchen sink.  I wanted her to have as many things available, for when he became unglued.  She had other kids she watched at this time too.  I would say about 7 or 8 kids plus Cody, but they were older and she had 2 high school age son's that helped her too.  It was not my ideal situation, and I would change it as soon as I figured something out. I left Cody, feeling like the worse Mom on this planet, and remember crying all the way to work, and during work, and being a bitch to everyone.  I called the sitter throughout the night and she had so many questions, I was unable to think of anything, but how I was going to get out of the closing shift, and get my sweet baby out of that house, which should have been condemned for being dirty and stinking like poop. I pictured the 2  high school son's of the sitters taking turns slapping Cody across the face, to stop his weird sounding cry.  Then if it could not be worse, a large table of people walked in, right at closing time.  This was the beginning of me making many young hostesses quit. The first one quit that night after I tore her a new asshole.  She had no business sitting a table a minute or two after we closed.  She didn't know, in my imagination, my son was being tortured and left to swim in his own waste, and I had to get out of this place to save his life.  Fuck her and the the people who tipped like crap and the manager and the busser and the cooks and the bartender and the happy servers drinking in the bar and my car that was a 79' mustang, with a rusted out floor, and the drunk customer that wants me to chat, and all those that do not understand how difficult life is as a single Mom.  I hated you all that night. And to top it all the babysitter said I had to come and get Cody, cause she had to go to bed.  This was a bad day!!!!!  Finally, I managed to leave, and get to her house right before midnight.  Cody was sleeping, but woke up when he heard my voice.  She reviewed all the strange things Cody did that night, and wanted to know if he had been tested for any disorders.  I thought wow another bitch to take down, but instead I came up with the number one excuse of all.  He had never been away from me, so that was why he behaved this way.  Shit he was only 9 months old, give him a break.  As I left, she handed me a book, and said I needed to read it.  I glanced at the title quickly, seeing the words Autism.........and threw it in the back, drove home and held Cody till he fell asleep.

The Babysitter

It seems important to mention, since I am somewhat "old school" with my views on who watches my kids.  I won't ever understand how a Mom can leave her child with a babysitter all week, all day long. Even with that said, if it's what is necessary to maintain  the family income, and it doesn't riddle you with guilt, who am I to judge.
When  Cody's dad moved out, he skipped town.  He said he had to get away to recover from our breakup.  Like it was so tragic.  Well it was tragic for me and Cody.  Not because Phil moved out, that was refreshing. I was freaking on what to do with Cody when I worked? I was working at a restaurant for about 7 years, so I had a fairly flexible schedule, working mainly nights. My parents, they were out of the question. I would have chose unemployment before asking for their help.  Imagine my step mom, who believed at the time Cody was not behaving normally, because I wasn't a good mom.  She didn't think I could do anything right.  My house wasn't clean enough, because she was a clean freak ( now we'd call it OCD), she also had TMJ, so she flipped out on loud sounds, just like my ex-husband (WTF), and she would have searched my house till she found something illegal, and have the police waiting when I got home.  Of course my dad would have slept through it all.
 *Sidebar* I know this sounds awful and I can't believe I'm even mentioning this, but since no ones reading my blog except for me, I'll say it anyway.  My step-mom was a bitch, unloving and a slave driver.  She affected each and every one of us kids in a negative way.  I wonder if things would have been better for all my siblings if when I was 5 or 6 I would have pushed her down the stairs and she flew through the window, cutting her jugular vein, causing her to die. I would have taken it for the team, do my three years in Ju-ve and returned just in time to begin 4th grade. I'm just saying no more TMJ bitch.LOL Hey,  It was the 60's and 70's, no one was there to protect the kids. And please don't judge me on what I just wrote.  I was trying to be funny, which helps me cope with the shitty things.
So getting back on what to do about a sitter for Cody. I don't think I can say enough about Cody's Grandparents on his dad's side.  Judy and Jerry I consider to be the grandparents all kids should have growing up. I'm  still confused on what happened to Phil, but I could count on them for anything.  They loved Cody no matter how different he seemed.  They didn't judge me, although I'm sure looking back, I deserved a few stern lectures from them. Jerry and Judy would babysit cody 2 nights a week, so I still needed help when I worked the other 2-3 nights.  In the paper (it was before computers), I saw an ad about a babysitter right down the street from me, and reluctantly I set up a meeting to interview this lady.

If I ignore things, maybe it will get better?

I really felt confused as far as Cody was concerned.  At times he seemed to be just a very normal baby.  He was alert, seemed healthy and so loving.  He mastered the art of crawling between the 6 or 7th month, started sleeping through the night and didn't cry as he did when he was younger.  His dad wasn't around much, so I wasn't as stressed out, which had a positive impact on Cody.
  I'm not exactly sure when Cody had his first ear infection, I'm thinking around 8 months.  This was the beginning of many more to come.  Thinking back, I wonder if he had his first ear infection many months before, and the doctor just missed it  That would have explained the crying, for sure.  I remember how very difficult it was getting any of his medicine down using an eye dropper.  His very first antibiotic was Amoxicillin, yellowish coconut/banana, and fairly tasty, because he threw it up in my face.  I thought many times (secretly), what in the hell is wrong with my child, then quickly ignored the thought, because it would hurt way too much.                      
* Sidebar*  Over time I have realized this to be a normal response, unless there are apparent signs.  If you happen to be around a child that seems different, and the parents seem oblivious to the obvious, best thing to do is keep your mouth shut.  Even if they ask you, "do you think something is wrong with my baby," explain you're not a doctor and if they're concerned they need to visit their pediatrician.  Then get out of the conversation.  It's like a wife asking her husband if he thinks she looks fat in her bikini bathing suit.  The husband isn't about to say "yes honey you look extremely fat," unless he's an idiot.
When a parent ask someone "do you think there is something not right about my child?" What they are really saying is "please say my child seems normal, and make me feel better."  I asked that a lot to my friends, and Thank you by the way to all that lied, because I wasn't ready for the truth.
In my next blog, I will tell you about two people that called me out about Cody, which began everything!

Continued...Cody picks me!

Something I must make clear before I go any further.  For me to write this blog, I feel it's important  to be true to Myself and Cody!  If anyone knows me, I walk to a different beat, and sometimes how I perceive things may not be the norm.  I have no desire to change my beliefs or points of view in order to please those that may frown at what I say. At times I will be bringing up God when writing this, but I can assure you I'm not some holy roller that knocks at your door on a Saturday morning or angry atheist troubled with today's religion.  I just know, ever since Cody was born, everything completely changed drastically, especially myself, and Thank God for that.

When I ended my last post, Cody was constantly crying and his dad was on my hit list.  We both were under the belief there was nothing wrong with Cody.  The doctors I took Cody to all said the same thing " all babies develop at their own pace."  And that answer was fine for me.  At that time I was dealing with a crappy marriage. I suppose I could go into detail about how I felt about Phil, but instead I will just say we both had no business being together, and leave it at that.  It has taken many years for us to be good friends, so it wouldn't be fair to bash him on past shit, even though he was an asshole. Still I might change my mind.

"Sidebar"  It's inevitable a shaky marriage has little to no chance of lasting, unless things change for the better somehow or one or both decide to just put up with each other. To Think having a baby to make the marriage better, like I did, is not a good idea.  I personally know the world would be a better place if marriage was a thing of the past.  I mean what actually is the point of it all?  Oh yeah, it's an industry, and it employs millions of people,  mostly Lawyers.
 There are so many" special needs" babies born every year ( and it's going to get worse before better), which frightens the hell out of me.So much attention is placed on the child, and unfortunately, someone (usually dad), gets ripped off. A couple that can stay solid together while raising a child mentally handicap, well that to me is a tough gig, actually very incredible.  I've known one or two couples over the years that still had it going on, and wow what great people. What helps is a strong support system.  It is so freakin important to not lose sight of each other, otherwise it becomes like a brother sister relationship, and that's hard to undo.  Have your "circle of trust" people, such as grandparents, aunts and uncles or good friends trained to help out when possible, because you will need it!


I think Cody was about 6 months old when Phil and I started to discuss ending our marriage. Phil didn't really get into the daddy thing too much. I really couldn't stand Phil anymore, because he was one mean dude.   He used the TMJ excuse a lot, but basically did what he wanted, saying "Cody only wanted to be with me." Funny thing is he is still using that line.
At this point my biggest concern for Cody was eating.  I stopped breastfeeding when he was 4 months, because he couldn't keep it down.  I really can not for the life of me remember what Cody survived on after breast milk.  Of course I had  moved on to jars of babyfood, but that wasn't well received, as you can imagine. I do know he really liked crackers and goldfish.  And I was so frustrated to say the least, and I didn't know what the Fuck I was doing, and I needed to know what was wrong with my son, so we could fix it!

Cody picks me!

Ok, so I had the miscarriage and found out the fetus had some chromosome disorder.  Sure, now in 2011, this would be a red flag, but what did the average person know back in 1990 about all the mental disorders floating around?  I knew about downs syndrome, which I thought was exclusive to  babies with old moms.  Oh yeah, "Rainman," came out in 1989 introducing autism, but only glamorized it.  And who really knows what causes autism?  So, I was only 28 years old, had no family history of mental disorders that I knew of, on both sides, so I was good to go on getting pregnant again.
I think it was about 3 months after I miscarried, I became pregnant again.  This time I went to a different doctor, because the last one was bad luck.  Let me tell you, being pregnant is just wonderful.  At forty weeks my water broke, went to the hospital and 24 hours later I delivered a healthy baby boy 8 pounds 15 ounces, 22 inches long. Except for having him circumcised, he never left my side.  We named him Cody Alan Thompson.  There was a football player at the time named Cody Carlson, and thought his name was cool and uncommon. Little did we know.
Cody was such a beautiful baby, with eyes so big and light blue, just like his dad's  There was nothing about him indicating any mental health issues.  Again what would I have noticed anyway? I knew nothing about newborns or birthing babies....
Not skipping the subject, but occasionally I'm going to take you to a "Sidebar"  and that's my way of saying I'm kinda getting on another subject, and I'm aware of it, but I will get back on track when I'm done saying what I have to say. Here's a "sidebar":  Doctors would probably frown on me for saying this, but there is a way to rule out Fragile X even Downs Syndrome as soon as you hold your newborn.  I may mention how to check, later on, but I'm not sure right now if I'm ready to explain. **  If you're desperate and are so stressed out worrying about your babies  blood test results, email me and I'll be glad to tell you.
Ok, back to January 19,1991 the day Cody arrived. Like I said, Cody was healthy and I had no reason to think otherwise when I took him home the next day.  Breast feeding was somewhat challenging at first, but I'm sure that was normal too.  As days went by Cody seemed to cry a lot.  It was like an angry pissed off, I hate you cry. I had no idea what was going on? I thought he wasn't getting enough milk, since he was a big baby, but this cry was during and after  breastfeeding, and all night long. And he would only breastfeed on my left  breast.  So I had to pump the right one while feeding him with the left  To top it off he started having bouts of projectile throw ups.  I think I'd be happy going through life not knowing what breastmilk tasted like, but Cody made sure I had my fill.  He bombed every inch of our house and me.  My hair was usually coated with dried milk, my dogs had their share even 5 feet away; it was a bad scene.  My first response was to go to the pediatrician, which was a waste, because she thought he was allergic to milk.  So we had to put Cody through all kinds of tests, which didn't indicate any allergic results.  Just crying and more crying. Oh yeah and where was Cody's dad??
  

why my baby?

Since I had Cody, I must have asked myself over a million times, why in the world did I have a handicapped child?  Even more times I wondered how come Cody got stuck with such a suck ass Mom?  But along with everything else that we don't have control over, I have learned to accept it.  I use to sometimes think, "Hey, he could have some hillbilly mom that locks her kids in cages and whips them daily."  Or have a child molester parent, which is so sick, I can't talk about that anymore.
So basically I stopped wondering.  Sometimes I think I even know the answer, well, at least what makes sense to me.
Growing up, I would have to say my family tops the list of dysfunctional families.  My dad divorced when I was about 3 or 4, and remarried a childless lady that had no business being a stepmom.  I don't really know the details, but my dad received custody of all six of his kids.  To this day I have not seen my mom, and don't even know if she is alive.  I think I could write for hours about my childhood, and all the terrible things that happened, but maybe later.  Good thing is I wasn't sexually abused, or physically, just mentally (the usual, lucky me).
I was a fairly wild girl, but always had the dream of being a Mom one day.  After many boyfriends, I settled for a guy that was head over heals obsessed with me.  I think we married around 1989.  His name was Phil.  I have no idea why we married, except for maybe we needed money and the reception was quite profitable.  I sorta didn't care too much for Phil, because he was one of those guys that took away independence.  He basically thought I was cheating on him most of the time and thought all my friends were out to break us up.  So I thought having a baby things would get better, well, at least I'd have a friend.  So after a year of marriage I became pregnant.  Unfortunately, on my 12th week I had my first miscarriage.  I was messed up from that to say the least.  I wanted to know what caused this ?  My doctor suggested they do testing on the fetus, and of course I agreed.  A few weeks later we found out it was some genetic disorder that had to do with chromosomes, but the probability of having this happen again was small,. almost impossible.
But really it didn't matter, I wanted to try again to have a baby. I would have taken the chance even if I was told I had a 50/50 chance of Siamese twins. Nuts I know!

Lets get this story started....................

First of all, I'd like to introduce myself.  My name's Gidget and I'm a single Mom living in Fishers, Indiana with my three kids, Cody, Emilie, and JB.
There are many reasons why you decided to read my Blog.  Most likely you're researching what Fragile X Syndrome is all about. Could be you just found out your child has it. Maybe you know someone who has this Genetic Disorder, or your a teacher, doctor, or one of my friends who just want to read my blog? Whatever your reason, I'm glad you're here.  My reason's behind writing this blog is not for anyone to feel sorry for me, or for me to complain about how hard life is with a child with this disorder. It's definitely not pitty party hour either.  Rather, I want to help all you readers understand, learn, and figure out what's going on with Fragile X children.  This Genetic disorder started off slow, but has built up a lot of momentum, so much, that one day we will all know someone who either is affected by it or is a carrier.  Although that's just my opinion, but I hope I'm wrong.  I do know they have made some sort of break through, which I'll talk about later, since it's only in the test stage, and I find it confusing (reversing Fragile X Syndrome).
Keep in mind I'm not a doctor, but I would venture to say, since I've raised my child with FX for over 20 years,  I'm more of an expert on this subject. This is the common response I've encountered over the years from the majority of doctors, when I ask them if they know much about FX, "Oh yeah, I've heard about it, but could you refresh my memory."  That's something no parent wants to hear. BTW I'm going to abbreviate Fragile X, so I don't have to type it out.  And the letters FX kinda looks cool.
I have so many things to say about FX, numerous stories, things to do and not do,explaining FX so it makes sense, so this blog will be going on for a long time.  I'll try to entertain you, because everyone needs to laugh every once in awhile. 
 On a serious note, in every stage of a child's life there are things that will happen. Walking, talking, starting school, puberty (yuck), dating, sports, driving, going off to college, career, and getting married, you know...things like that.  But when your child has FX, those stages take detours, and won't always happen, or don't work out that way.  It's a different game plan, and even now, I'm still trying to figure it out.   Even so, I've survived through the first 20 years, and for those of you just beginning, welcome aboard.
I think the best way to get things going is to start from the beginning.  Remember this is not about me, but I play an important part, so if I have to talk about myself here and there, it's just to help those of you with FX children know what you as parents will be feeling and all the shit you're going to encounter over time.  Besides that, I've had to jump through a lot of hoops to get to this point, and not be crazy, so I've got a supporting role as Mom.  But the main Star is my beautiful son Cody Alan Thompson!  
For now I'm going to sign off , because Cody wants to play Wii Bowling. I can't keep him waiting.  Seriously,when trying to wait he gets over stimulated and shit hits the fan.  Over time it has caused me to hate waiting too.  Strange how that works.