Saturday, July 30, 2011

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.

Tuesday, July 26, 2011

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.

Thursday, July 21, 2011

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!

Monday, July 18, 2011

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!

Saturday, July 16, 2011

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??

Friday, July 15, 2011

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!

Tuesday, July 12, 2011

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.