The Fragile X Study

So, I had a "first" today.  Someone tweeted me and asked me to help spread the word about a Fragile X Study.  I knew about it because the NFXF has been pushing information about it for a couple of weeks now.  And I've spread the word among my local families, but @Chanel_Ross asked me to blog about it, so I thought I'd share it here too.

THE FRAGILE X STUDY is seeking male and female participants between the ages of 15 and 55 who have been diagnosed with Fragile X Syndrome to enroll in this clinical trial. This clinical trial is studying the effects of a medicine on the cognitive and inattentive symptoms in people with Fragile X Syndrome.

Fragile X Syndrome, also known as FXS, FRX or Martin-Bell Syndrome, is a genetic condition that causes intellectual disability, behavioral and learning challenges and various physical characteristics. Fragile X Syndrome occurs in males and females, but males are more frequently affected than females and generally with greater severity. Fragile X Syndrome is a specific, identifiable condition with a known genetic cause. Fragile X Syndrome characteristics include poor eye contact, social deficits, poor communications and repetitive behaviors.

There is a great site with EVERYTHING you want to know about this study.  You can find it HERE!  

Back to School....it's never easy!

I feel like I'm a seasoned veteran as far as sending a child "back to school."  I've been doing it since 2000.
I had years where I would cry at IEP meetings, not know exactly how to fight for my son, or what to do.
Honestly, I don't remember the last time I had a feeling like that.  I quickly became involved in the special ed PTO, later became a member of the Board of Education....I schooled myself in the rights of parents in special education.

After all, I had 2 boys with Fragile X...and I was NEVER going to be that mom who cried at an IEP meeting when I asked for something and was denied. Nope.  Not me.

I've had a REALLY good run.....knowing the law helps, knowing what you're school district can and cannot do helps, having friends going through the same thing helps, and knowing where to turn in the Fragile X world helps too.

Last Sunday...I got Ben's placement letter for 6th grade....a new school, middle school.  Not new to me....Matty's already gone through it.  He didn't enter as a 6th grader, the program then wasn't what it needed to be....he moved back in 2 years later and repeated the 7th grade so he could spend 2 years there.

Ben's IEP meeting this spring was a slam dunk....the district did their whole slew of evals...and I let them.  I took Benji to visit with Dr. Vicki Sudhalter to get her take...I was armed.  I know how capable he is.  It was easy....we all agreed that Ben would go into the "Resource Room" setting....where he's going to model a typical Middle School day....8 periods, 8 teachers, etc..... easy peasy.

I get his letter on a Sunday I read it, after being away on vacation for a week....and the teacher listed is the teacher of children with autism.

I literally fell down and started to cry as I read this letter.  This was the OPPOSITE of what his Team and I agreed to.

Why?  Why?  Why?  How does this happen?  In my head I know the drill I'm going to get when I make that phone call the next day...."Well, Mrs. Fasciano, after we thought about it, we think maybe he's not strong enough to be in the Resource Room setting, so we're going to start him in the ASD class and see how he does...blah, blah, blah.....I could write the script I anticipate hearing.

I reach out to 2 other moms, Ben's BFFs...and they have the SAME teacher letter that I do!!!  How can this BE?

Wait....maybe the ASD teacher is going to teach Resource Room this year due to the high number of kids?  NO....too many ASD kids Ben's age in  the district....no way.

I make a call the next day (Monday)....get the voice mail of the Special Services Supervisor.  Leave her a message and ask her to call me.  I call his case manager, leave her a voice mail.   I can't reach human being to talk to me about this....it's been 24 hours of nausea as to the fight I'm ready to fight on Benji's behalf.

I get a call, the following afternoon (48 hours later of nausea later)...guess what?

The placement letter that went out is a MISTAKE.  The way the new IEP system feeds up to the middle school, this multiple handicap classification "filters" him into the Autism class.  

We're going to send you a new letter with the correct teacher placement....for the Resource Room setting.

For Pete's sake....please, please, please....shouldn't someone READ the letters BEFORE they get sent out to the parents?  I could do without 48 hours of nausea.

That's all I got today.....stay tuned for the sinus infection/root canal sag from late last week!

I think it's time.....

I think about blogging every single day.  Really.

I'm not really sure what happens from the time I think about it, to the time it has completely escaped my brain, but it does happen.

I have so much to say....and honestly, aside from the very few people I interact with on a daily basis, it just doesn't get "out there."

I think I'm going to try to change that.  Really.

I'm going to try to blog on a more regular basis....even if it's about something that might not seem to be monumental...at least there will be a memorial of it....should anyone care to research me and my life after I'm done living.

That's all I got for today....but check back in another few days....I promise to be here!

The 'Cleanse" is over

So, I've completed the Infinite Possibilities Cleanse.  I completed all 4 phases, and removed my final set of magnets off my ears on Monday 7pm.  I'm almost embarrassed to admit that I lost a total of 32 pounds (yes, for me, I was pushing my own personal "maximum density") and 37 inches in total between my shoulders, midriff, waist, hips, butt, thighs and ankles.  I've gone back to my skinny clothes, which I haven't worn since 2008...which means they need updating.....serious updating.  I digress.
I won't lie and say the cleanse was easy...because it's not.  It was for me, but I had committed to it emotionally before I started.  There are no pills, no shakes, none of "their" food...it's all real food you can buy in the store.  Mostly fruit, vegetables, organic whole milk, hard boiled eggs, raw seeds and fish.  There are mostly common sense habits that I followed.
I wish I could express how much better I feel.  My lethargy is gone....I just feel better. I would highly recommend this cleanse to anyone who is serious about changing their life style.  Since Monday, we've adopted a "clean eating" model at home....and 3 days later, everyone is still alive!  I've planned our meals for the next few weeks and it seems to be a better way for me to manage this new lifestyle rather than wonder what's for dinner at 4:30pm after working all day.
Not going to lie....I'd like to lose another 8-10 pounds and get back to that magical number I have in my head....it may or may not happen....I'm not 21 anymore....I'm going to be 45 in a few weeks.
I have to thank my parents for this gift.  If it weren't for them, I'd never have known about the cleanse, since they are a company that doesn't advertise, they expand their business by word of mouth, and a customer of my dad had lost 20 lbs. on it last December.  My mom had the ability to see I was drowning in misery (unknown to me) and as a result, I was trying to eat my way to feeling better.  I'm that person who eats when stressed, at least I used to be.  With a husband out of work ( our primary breadwinner) for 13 months, my internal stress was overwhelming.  He's a planner, always ready for the worst, so the financial impact of him not working wasn't terrible....it's my own worries that plagued me.
What's funny is that as soon as I started the cleanse, I received some terrible news about my dad, which normally would have sent me into a tailspin of an eating frenzy.  That's how I knew that I had made the mental commitment to be healthy.  The bad news (more on that later)  gave me even more resolve to get healthy and stay healthy.  Hopefully the 52 days of the cleanse were more than enough to create some new life long healthy habits.  Wish me luck!  xoxo Paula

Phase 2.....Still making changes

So, a week ago, after 12 days of Phase 1 of the Rapid K cleanse, I began Phase 2.  At my visit, I was down 13 lbs, and 17 inches.  Yes, it's pretty shocking.  I'm not sure if I'm shocked at how many pounds and inches I lost, or at how great and not hungry I'm feeling.

Honestly, I think the magnets that I rotate (every 90 minutes in Phase 2) which are on my hypothalamus glands, really are the science behind the not being hungry.

I went back to 2 days of fruits and vegetables....but this time, instead of cabbage, carrots and green apples, I was able to have mangoes, berries, pears, plums, tomatoes, cucumbers, asparagus and spinach ( the last 2 can be steamed).  I've been in heaven!  On the 2 milk days, I'm able to have 1 egg each day.  It's really been great so far and not at all inconvenient or difficult.

A couple of things I wasn't expecting.....to feel cold....all the time.  I became so used to being overheated, partially thinking I was in early menopause, but in reality carrying a few too many lbs. for my frame....I was perpetually warm, dressing in light layers so that in any given moment, I could shed a few of them.  Now, I'm working in my home office with a space heater.....I'm that cold. It's not the worst thing...just different. I certainly have plenty of clothes to layer....it's just that as the day goes on, I'm putting more clothes on instead of removing them.

My skin looks amazing.....funny what happens when you stop putting junk in your body...I sleep better, longer and more soundly too.

I'm nervous about what happens when this cleanse is over, but at the same time, I've been a maniac on Pinterest and other blogs racking up clean eating recipes which I plan to adopt once I can eat normally again.
You know it's odd when for Mother's Day you ask for and get a super duper food processor.....to help with clean eating.  Now, if I could find my slow cooker, which I'm positive I have never used in 20 years...a bridal shower gift probably still in the box...because many of the clean eating meal recipes I've been collecting are slow cooker meals, where you put all the ingredients in, let it slow cook for 8 hours and DINNER!!!!!

My next cleanse visit is Monday......stay tuned.  Not expecting to drop as much weight as I am inches....since that's the objective of Phase 2~.

Making changes

Once again, 6 months have gotten away since Amy Z asked me to blog more.

I've been wanting to make some changes, for me, as a person.  I haven't been feeling like myself, for now, what seems like forever.  I'm lethargic, tired, unmotivated, inactive...BLEH, in a word.

Don't get me wrong, I manage to get out of bed everyday and complete everything that needs to be done.  I even manage to smile during the day.  But I don't feel like Paula.

As someone who has spent the majority of her life battling food, I knew that somehow my struggles were related to weight and health.

Instead of going back to a method of dieting I had utilized before, which in my case, has always been a temporary fix, I started thinking about those times in my life when my weight wasn't at the forefront of my mind.

I was brought back to 1988.  I was a junior in college, 20 years old, living in Bologna, Italy.  Yes, the Italian way of life....more natural, less processed.  It's not really Italian, it's all over Europe.  Mediterranean.

At the same time, my mother, who still mothers me (thank goodness someone does....who knew at the age of 44 I would need it more than ever?) tells me she's concerned.  She says I look tired and unhappy.  Her concern is that I have these boys who are going to need me for a REALLY LONG time.

I'm not going to have children who do what I did....move away for college, move to a big city, get a job, find a spouse, buy a house...you get the picture.  I have to take as much responsibility as I can to make sure I'm as healthy as I can be, so that my boys can have me around for as long as possible.

So, when my mom gives me this packet about a "cleanse," I don't roll my eyes at her like I normally would.  Instead, I promise her I will look into it and consider it.

Let's fast forward.  I'm on Day 7 of this Rapid K Cleanse.  I've been alternating between 2 days of cabbage, carrots and green apples, and then 2 days of organic whole milk (24 oz. a day).  Everything I consume must be consumed between 11 am and 6pm.  I'm completely amazed as how I am able to do this.  I really thought I'd faint from lack of calories on day 1.  Ha!  I've never felt better.

So, this is Phase 1.  There are 4 phases total, this being the most brutal.  The rest should be easy breezy for me, since this one isn't that miserable.

During the past 7 days, I've created a folder and lists of the things I'm going to incorporate to my families diet once I finish my cleanse.  We are all going to eat "clean"....without being maniacal about it.  Kids, gradually and with limits, but me and the husband....yeah, it's going to be different around here.

While I have always done some of the right things, as far as clean eating goes, over the last 20 years since I've been married, I've slipped a little bit each year.  Time to regain that control.  It's soooo much easier now to eat clean in the US than it was 20 years ago.  I'm looking forward to it!  I've recently found some blogs and sites for clean eating, or non-GMO eating.  I've also gotten an e-subscription to Clean Eating magazine, and I'm really really excited!

You can easily see my "before" pictures on my Facebook page....anything taken in the last 10 years really qualifies.  Once I complete the 4 phases of Rapid K.....I promise to post an "after"

Wish me luck!

xoxo
Paula

It's really unbelievable how I don't blog anymore

and really sad.  I would blog every so often, but I've become so caught up with so many different things, that I'm sad to say I've been neglectful.

September 2012 update.....

Matty is absolutely having a terrific time in high school.  I feel very lucky that he's in such a good program with so many different kinds of opportunities. He has after school opportunities, social and sporting activities....he's quite the busy young man.  Makes me really happy for him.

Benji has officially been elected mayor of his classroom.  He is with the same teacher for the 4th year in a row, so he knows the ropes of the classroom and school.  He is thriving more than I could imagine.  Independent reading was something we'd NEVER see.  Of course he feigns reading, and tells you he's read when he hasn't, but NOW he's READING.  THAT is SO HUGE!!!!!!!!  I was blown away by the interest and the willingness to read....it's been like pulling teeth since he's an infant....but like anything else, we just kept on trying....we never gave up on him. He'd cry, wiggle, run away, get angry, etc...ANYTHING to AVOID to reading.  He's another one, with the social and sporting schedule. 

Dear Husband has been out of work since March......and get ready for this one.....we're STILL married!  I didn't realize just how tired I  was after doing most of the everyday parenting for the past 15 years.  I have become very spoiled.  Some mornings, I don't get up until 8am!!!!!!  I literally roll out of bed, and roll into my home office.  He's even got coffee made!   I will be sad if and when he goes back to work.   It's also given him the opportunity to spend time with the boys like he's never had before.  It has been really good.

Look at that.....6:10....time to make some dinner!