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Living with Fragile X Syndrome

A bit of history

In April of 2006 our family received the life changing news that our son had a genetic mutation called Fragile X Syndrome. Like most people in this country, we had never heard of this condition even though it had been affecting Umma and her family for many years. The goal of this website is to share our story and connect with other parents of children with Fragile X and, just maybe, spread the word about this disorder so we are no longer greeted with "fragile what?" anytime we discuss our son's challenges and special needs.

How to use this strength?

Posted By Umma on August 31, 2010

After a brief flirtation with Chuggington, Monkey is, once again, obsessed with the Penguins of Madagascar.   This makes me very happy because those pen-gu-ins1 are hysterical.  Duhdee and I quote them.  A lot.

Monkey also quotes them.  A lot.  Right now his favorite episode is “Hard Boiled Eggy.”  We hear a lot of “Mort!” and “My eyes!”  Personally, I can’t wait for him to break out the “I want to fight some Ninjas in a chain saw factory!” 

We’ve all heard about turning the child’s interests into a strength, that we should find ways to incorporate their interests into educational opportunities.  Here’s the problem…I’m not that smaht.  OK, I am that smart, I’m just not that CREATIVE. 

I’d love to hear ways people have used this sort of thing to create learning opportunities.  Right now I’m just grateful for all the vocabulary he’s learning but it would be nice to find ways to use it for other things too.  Exactly “what” those other things are is my problem and so I throw it at the feet of my internet peeps and hope ya’ll are more creative than I. 

Not that thatis such a great feat, lol.

  1. in my best Dr. Blowhole voice [↩]

Category: Life with Fragile X Syndrome ♥ School | 2 Comments »

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It was a big day here!

Posted By Umma on August 28, 2010

First, Duhdee totally broke my heart when he said no to this…

I don’t understand how anyone could say no to an 8 month old Australian Shepherd mix.  Sure they are flipping INSANE but they’re insane in that “OMG, let’s do it again” kind of way.  There are very few dog breeds that I’m willing to add to the family that I think could keep up with our little Monkey and an 8 month old, cracked out Aussie just might be the perfect solution.  But *sigh”

To salve my wounded heart we decided to go to the fish store to add the new angelfish I had been wanting for a while.  We’d had 3 at one point but one had a fin deformity and passed on after a few months to no one’s surprise (she had a Nemo fin, come to think of it.  Poor thing.)  Then the large male just died.  He was fine when we went to bed and when we woke up he was dead.  He was the big guy in a tank of Tetras.  The water quality was fine.  We were very sad.  That left one lonely girl in the tank and she has ruled the roost uncontested since but they do well in groups and the tank seemed so empty.

So, we went to the fish store and bought 4 more!  They’re very pretty, I wish I’d mastered the art of photographing fish tanks but, alas, all you’d see is the reflection of my flash and the flash is not nearly as beautiful.  They look basically like this, 2 are mostly silver and the other 2 are more black.

Monkey HATES the fish store and there are probably a thousand reasons but the ones that I suspect rank highest on the list are:

  1. It’s hot and humid;
  2. It smells funny;
  3. It’s always crowded;
  4. It’s tiny;
  5. The lighting is weird; and
  6. There are 90 billion tanks of fish that he wants to pet and all he hears is “Monkey, don’t touch!” and “Hands OUT!”1

After the fish had been bagged, Monkey immediately started asking to carry it and the teenage boy who’d helped us even managed to put one bag in his hands before I realized what was happening.  I startled him a bit when I snatched it out of Monkey’s hands and said, “I don’t think that’s a very good idea.”  Which, I think, should qualify me for an award of some sort…the understatement of the year, perhaps?

All through the check-out process and the 30 minute ride home Monkey asked to hold the fish repeatedly and we stuck to our guns and said no every time.  He was not a happy camper.  Of course, after we got home he jumped on YouTube and immediately pulled up this video:

See how smart we are?  After the fish were in the tank he grabbed one of the empty bags and acted out part of the scene…the bit that starts at 1:45.

Yeah…really glad I grabbed that bag from him…

  1. Also, “Uh, yes, that is a FROG!”  He pronounces it F*ck, loudly…repeatedly. [↩]

Category: Life with Fragile X Syndrome ♥ Non Sequitur | 1 Comment »

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This entry is brought to you by one adorable Monkey.

Posted By Umma on August 27, 2010

I am laying in my bed with my laptop on my lap.  My son is laying next to me using my shoulder as a pillow.  He is sleepy as sleepy can be but he’s still awake.  So much for T.enex helping him sleep.  He wants me to type, he loves watching the letters crawl across the screen.  I really and truly have nothing to say except that I hate how much he’s been struggling lately and if my typing nonsense and throwing it out there on the internet makes him feel even a little bit better then you all get to read WORTHLESS (thanks for the caps lock, bud) drivel.  Sorry.

So.  Earlier today Monkey made a really awesome discovery!  He can reach the M&Ms we keep on the top of the refrigerator if he grabs his stool.  Yay!  Now he’s constantly running around the house with hands covered in candy coating (aren’t those supposed to NOT melt in your hands, btw?) and a mouth covered in chocolate.  Which is exceptionally nice when he still sometimes shows his affection for me by WIPING HIS MOUTH ON MY CLOTHES!  I know he’s not the only one, do they ever outgrow this though?  I’m really going to miss that bag of M&Ms on the refrigerator.  Walking by and grabbing two or three is a nice little pick me up.  But I guess it’s time we give them up anyway…they were potty training rewards and we’re a good year past being potty trained now.  I think the lesson has stuck.

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nnnnnnnnnnnoonoonllnnnnnnnnkkkkkkknnllllllll    ttttttttttttttttttttttttttttttttttttttttttttttt

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lll

Errr..sorry about that, he decided I wasn’t doing it right.

So, where was I?  Oh, we have no where left to put the M&Ms and unless we are willing to spend the next bit of time covered in candy coating and chocolate spittle we have no choice but to give them up.  The child is just way too tall.  *Sigh*

He’s wandered off again.  He’s asking for “covers” but he doesn’t want to go to bed?  WTH?  Anyone got any brilliant ideas?  Besides duct tape…because that’s all I’ve got…

Category: Adventures in medication ♥ Life with Fragile X Syndrome | No Comments »

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One Day Fragile X Conference in Connecticut

Posted By Umma on August 27, 2010

The Fragile X Society of Connecticut is hosting a one day conference again this October!  Marcia Braden, Ph.D. (Colorado Spring, CO) Karen Riley, Ph.D. (University of Denver), Don Bailey, Ph.D. (RTI International, NC), Sharyn Lincoln, M.S., CGC (Children’s Hospital Boston) and Jonathan Picker, MB ChB, Ph.D. (Children’s Hospital Boston) will all be presenting.  See the attached poster for more details and also the attached registration form.

Conference Poster

Conference Registration Form

Duhdee and I will be spending Friday night (October 15th) at the hotel.  If anyone else is there and wants to grab dinner, drinks (or dinner & drinks *ahem*) drop me a message through the “Contact Us” form so we can arrange a meet up.  I’d add coffee on the 16th but early risers we are not ;-)   There is a break for lunch though so we could do a lunch bunch!  Do I sound desperate?  I do, don’t I?

Category: Fragile X Conference ♥ Life with Fragile X Syndrome | No Comments »

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A conference call.

Posted By Umma on August 26, 2010

Tonight Duhdee and I had a conference call with the developmental pediatrician.  We caught up on what we’ve been seeing from Monkey over the last med-free week, none of which is particularly great.  His sleeping which had been tanking continued to do so with a vengeance.  Not only were the night wakings continuing but we had the new and added issue of not being able to settle down to sleep.

During the day he was…intense.  Busy, busy, busy with an extra helping of busy.  For those of you who’ve met him and marveled at our ability to keep up with him?  We lost the battle this week.  Duhdee has his own issues going on with back pain and sciatica but even still…Monkey has been an unstoppable force.  He was a whirling dervish of motion.  A Massachusetts Jumping Bean.  An Umma-wearer-outer, squared.  It’s no wonder I’ve had near constant headaches since last week, we get no sleep and we are constantly in motion.

The only not-awful part of the week of no meds was the deep pressure Monkey has been craving.  That has resulted in a lot of hugs, including some of the full body hugs that Monkey specializes in1.  Of course, with me enjoying all the extra hugs I was also very aware that I was only getting all these hugs because my little guy was holding on by a thread and all that loving was really his desperate attempt to self-sooth.  So, if I let myself think about it, yeah, that part was awful too.  Disregard.

Earlier this morning I took a picture of Monkey just before he woke up.  He was sleeping with his hands under his bum and his legs crossed tightly2.  When I showed the picture to a co-worker she commented that it looked like he’d put himself in a straight-jacket.  And it kind of did.  Even in his sleep he was still trying to self-soothe.  My poor babe.

After dinner we sat down and paged the pediatrician as instructed.  He’d had Duhdee give Monkey a single dose of the A.dderall to see if it helped alleviate any of the symptoms and it did to some extent but he was still rather intense.  After a lot of discussion we’ve decided to go with T.enex. The Dr. is still trying to decide if we’re seeing symptoms of ADHD because of anxiety or if we’re seeing anxiety because of the ADHD meds.  Treating the anxiety could take weeks for the medication to kick in and show a changes, we should see some immediate changes with T.enex though so, ultimately, that’s why we’ve gone this route.

You know, this really just sucks.  Fine, he needs medication to be the very best Monkey he can be but it just plain sucks that we’re “hoping” most of the time when we have to make these calls.

We kept Monkey up until the pharmacy could fill the prescription and started him on it tonight.   Here goes another ride on the medication roller-coaster!  Wheeeee!

  1. He latches on to me so tightly with his arms and legs that I don’t need to hold on to him, he’s like a little…uh…Monkey. [↩]
  2. It’s on Facebook. [↩]

Category: Adventures in medication ♥ Life with Fragile X Syndrome | No Comments »

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