The 2012 International Fragile X Conference

I get a lot of people searching for this! If you haven’t found the information already, let me give you the deets1.

What: The 2012 International Fragile X Conference
When: July 25 – 29, 2012
Where: Intercontinental Miami in, where else? Miami2

If you’re curious about what you can expect you can read these semi-coherent posts I wrote about the 2010 International Fragile X Conference in Detroit.

I had no clue!
Apparently this isn’t going to just write itself.

And these much more useful posts by the lovely Kristie Meyer3 of Life With My X-Men:

What I learned at the Fragile X Conference, Part 1
What I learned at the Fragile X Conference, Part 2

So who’s coming to MIAMI??? You’ve got a year to prime your liver! I’ll scope out the very best bar seats online soon 😉

  1. Yes, I just said “deets” I am a huge hoser. []
  2. !! []
  3. Who I got to meet! []

*Cough*hack*Cough*

Monkey’s fever has broken but that cough, ugh. Because of the medications he’s on he cannot take cough suppressants either. I just went into his room to set up the Vicks Waterless Vaporizer1 and his little face just lit up. I hope it lives up to his high expectations and he gets some rest tonight. Poor kid looks exhausted.

Speaking of coughing…nope, I got nothing else to say on the topic since the fact that it sucks obviously goes without saying, right?

<Insert smooth segue here2>

It appears that we are planning a fund-raising walk to raise money for the NFXF and for our LINKS group so we can sponsor some fun family outings to give our families the much needed time around others who get it. I’m petrified that we’ll do all this planning and then no one will come! What can I do to get you to come? I’ll beg and I’m not above shedding some tears if that’s what it will take…just watch me sob as the actual day approaches3.

So, seriously, what would it take to get you to come out and join a walk besides getting to meet the incredibly hip and fun organizer? 😉

  1. No, I am not getting any compensation for that little bit of free advertising. []
  2. Fail. []
  3. Probably in August but my event planner SAMANTHA, has not gotten back to me on the location availability. []

Not so sweet…

I came home this evening to a sick little Monkey. Poor kiddo asked to go to bed an hour early! That is never a good sign.

It’s not often I share pictures here because I want to try to protect Monkey’s online identity as much as possible. The last thing the kid needs is his friends Googling him and reading all about his potty habits, you know? Anyway, I figured this one was safe enough1.

He had wrapped himself tightly in his Toy Story blanket and he was using it like a body sock. Uh…when you search Google Images for that, you might want to add “sensory” after that term … and don’t skim too far down the page. You know, on second thought…just don’t search Google Images. Try this instead.














  1. Duhdee gets no such special treatment! []

Sweeter than maple syrup.

What is sweeter than maple syrup? Getting to spend a day with my family, driving around southern Maine! Today was Maine Maple Syrup Sunday, one Sunday each year dozens of sugar shacks in Maine throw open their doors and welcome in the general public. They demonstrate how maple syrup is made, they often sell maple flavored goodies (whoopie pies, donuts, ice cream with maple syrup, candies, maple kettle corn, etc.) and a few of them offer hay rides as well. We have been for the last 3 years and we have a great time but today was even sweeter…

You see, two and a half weeks ago we had a visit with our developmental pediatrician. We’ve been stable on Monkey’s Tenex (for ADHD) for some time but we were faced with a new concern. As he slowed down, it became more and more apparent that he was having trouble with anxiety. He’s always had difficulties with certain transitions but it was ramping up at an alarming rate to the point that even familiar and comfortable locations (home or Grammy’s house) scared him. You could see the fear in his face as we approached the door…heck, at home, we could see the fear start blocks before we even turned onto our street. Home is his favorite, safest place. He loves to be home…but the transitions…oh, he would be covered in snot and sobbing by the time we got his shoes off and it took a LOOOOONNNNGGGG time for him to settle back down.

We talked to the developmental ped. about this over a period of a few months because anxiety in our boys can be cyclical…up for few weeks and then down….depending on outside circumstances. Monkey’s was not going down. It was spreading and affecting more and more of his life. So, two and half weeks ago we started Monkey on Celexa. We told his teacher so she could watch him for any adverse reactions and we told no one else.

Last Thursday, the mom of one of Monkey’s friends commented that Monkey was making so much more eye contact and he was talking more. We’d seen signs but we WANT this to work and so we really weren’t sure if it wasn’t just hopeful thinking but this made our hearts pitter patter just a little bit harder. Today, was the big test.

Monkey had a LOT of transitions today. He was in and out of Grammy’s van a dozen times. We stopped at a half dozen farms and every single one of them was packed with people. Kids running around, adults milling around. If we wanted treats we had to stand in line. And he DID it. He was the sweet, funny boy we see at home. He talked to perfect strangers, his language was all on point (he didn’t get stuck on phrases from TV shows like he does when he’s anxious), he stood in line with us for 15 minutes at one point. No fussing. No whining. No screaming. He just stood there and talked about the animals he could see and the food he could smell. He walked into the sugar houses, he walked into a store even, without any issues. No tears. No trying to run away. He pet a Belgian DRAFT HORSE. No dropping to the ground like a limp noodle. No pulling on my hand to keep me from getting closer.

Once, when we were getting into the car, Jeanie slipped. Jeanie is my mom’s cousin, she’s always at family events. Monkey has met here many times but he has not ever talked to her, except to yell “BYE!” at her when prompted. Today, when she slipped, he asked her, “You alright?” He took her hand, he initiated it even. He talked to her, greeting her every time she came back to the car…by name, “Hi, Jeanie!”

He was a changed boy. I have tears in my eyes thinking about this day…I’ve never seen him so calm and so relaxed.

Then, as the cherry on the sundae Sunday, when we got close to home…the spot where the anxiety always starts kicking in and the whining starts…he was perfectly quiet. He simply kept talking about Buzz Lightyear.

I know the days won’t always be like this but I am so hopeful that this will let Monkey live without some of that fear and anxiety that have been tripping him up for so long.

 

This is sort of, in a very tiny way, FX related.

I’ve admitted to being a geek before. I like gadgets, not as much as my husband, but I like them. A lot.

Last fall I whined and moaned about giving up my Blackberry. I loved it and it was pretty1 and then…I got an iPhone. To say that I love my iPhone would be an understatement of epic proportions. Anyone who has seen me since I got it has seen it because it is most often in my hand. I’m a compulsive email and Facebook checker. I carry a charger with me everywhere because I regularly drain the battery. I Skype on it, I blog on it, I text, I read library books2…I do pretty much everything except use it as a phone, hmmm, funny that.

Anyway.

Now that I’ve enjoyed my iPhone…I have this irresistible urge for an iPad *sigh* Why do I need an iPad? I don’t! I need an iPadTWOOOOOOO! Have you seen the new covers?? I’m having trouble though. Duhdee did mention yesterday buying me an iPad and I asked him, “Why would you want to buy me an iPad when there is an iPadTWOOOOOOO?” and he responded, “I don’t want to buy you an iANYTHING!”

He is sooooo hung up on this Android thing. And fine, maybe open source is better, maybe expandability is better, maybe cheaper3 is better but but but…

 

 

Why can’t Android be PRETTY? Is that really too much to ask for??

Can you guess which cover I want?

To make this sort of, in a very tiny way, FX related…there are a lot of Apps for communication and learning on the iPad 😉4.

 

  1. Red! []
  2. Seriously! It is pretty dang cool that I can check out books from my library network on my phone in less than a minute and THEY RETURN THEMSELVES! No more late fines! []
  3. Slightly. []
  4. Hey, I warned you in the title! []

Stop!

Monkey LOVES to be tickled. He loves it so much that Duhdee has been known to tickle him a little too long and has had to face the consequences1. Recently Duhdee was tickling Monkey, on our new big, big bed2, and mid-tickle Monkey cried out, “Stop!” He’s never, ever done that before! Duhdee stopped and Monkey ran to the bathroom so I’m not going to whine about an accident on our new mattress3.

Instead I’m going to tell you how Monkey has discovered the power of the word “Stop,” which is fantastic! He used it to protect himself and I was hoping he would generalize that in the event he ever needs to communicate to a peer to cut that $hit out. Right? It’s awesome.

What I didn’t expect is that he’d generalize it to e.v.e.r.y.t.h.i.n.g. including putting an end to Duhdee and I holding hands or hugging! So, now we need to rein in the little monster and clarify which situations where he can expect someone to honor his request and which situations he needs to just leave the room, roll his eyes and say, “Gross4!” like any other kid.

  1. Nothing a dry shirt could not cure. []
  2. The big bed having moved into Monkey’s room. []
  3. Not that I would anyway, we bought a waterproof cover for it, we have two senior dogs and a kid who likes to be tickled, we are not stupid! []
  4. I am actively teaching him this one! []

Sometimes I hate thinking up titles.

Monkey picked up a new word this weekend. Poor Duhdee was trying to get him dressed this AM and kept offering shirts only to be met with, “Nope. Nope. Nope. Nope.” Ha!

Also, this morning I had a chance to talk to Monkey’s teacher while we waited for Monkey to walk into class and she told me that they’ve noticed some really big language developments lately! He is responding to multiple questions appropriately without getting fixated on the first answer. He’s actually listening to the next question and answering it appropriately.

And, as if that all weren’t enough, the district has finally hired a new Assistive Tech specialist. Our prior AT passed away just before Thanksgiving last year and the district has been without anyone to help Monkey with that ridiculously expensive AT device my insurance company paid for last fall. So…he’s still not using it. In fact, he sort of seems to hate it. They’ve got a long way to go to build trust before he’ll even work with her1 so it looks like another year of AT lost *sigh*

This also means we’re going to have to add “compensatory services” to our IEP discussions, not what I want anyone focusing on while we’re arguing for a full time aid for the Monkey-man next year since, by all appearances, he’s being mainstreamed for 1st grade…

I’m pretty sure a rock star could have made that mess into a coherent post…rock star fail! 😉

  1. Unless she is blond and pretty, then he will be just fine. []

Not quite rock stars…

Today was the day. Duhdee and I went to a nearby middle school to talk to a group of 8th graders. All of these kids had decided they wanted to learn more about people with disabilities, they wanted to learn how to be more open and inclusive. The fact that they wanted to be there was a huge comfort to us, knowing you have a receptive audience is always nice.

Last night, because I am a procrastinator of epic proportions, I prepared a PowerPoint presentation. Even though Duhdee is the geekier of the two, I have a little bit of geek-cred. I totally rock PowerPoint. Of course, some of this has to do with the fact that I am required to do presentations professionally and he’s spent most of the last 10 years sequestered at his desk coding…other stuff…stuff that makes me look like a kindergeek. Let me have this moment though, OK?

So, I put together a slamming PowerPoint presentation and then asked Duhdee what he thought…and then chewed off his head for actually having the nerve to offer suggestions. Seriously, just nod and say “Awesome job, honey!” He’ll never learn. No he won’t. And neither will I, apparently, since I still keep asking. This morning, when I was getting ready to go, I realized I should add a couple slides…perhaps they were the same slides Duhdee brought up the night before. Perhaps.

So I sat down 20 minutes before we had to leave and cranked out two more slides. Then I added animation. Then I added a few more lines. Finally, with Duhdee standing over me with keys in hand, I called it good enough. I spent the entire 30 minute trip tweaking and reading and thinking. And feeling sick to my stomach.

Just before we walked through the door of the school I posted a Facebook status saying “Money1 will not throw up!” And because I have the most awesome friends ever, I got a bunch of sympathetic responses and suggestions on ways to deal with an upset tummy2. Oops. Then the strangest thing happened. As soon as the school secretary told us to take a seat on the bench, my nerves calmed down and I was totally fine. I told Duhdee afterwards that I realized there was no turning back at that point so I just had to do it. And I did. WE did! It was awesome too!

The kids were terrific, they and the teachers asked great questions. We talked a little bit about the “sciency” stuff but that wasn’t the main point. I wanted to give them a picture of what OUR lives were like living with a child with FXS and, even more importantly, we wanted to give them a picture of what MONKEY’S life is like coping with FXS. We talked about general effects of FXS…learning problems, behavior problems, sensory issues, hyperarousal…then I turned it around. Here were all these kids, what did I want them to know about this? What did I want them to know about kids with learning differences or other disabilities? That stuff is important to talk about because it answers a lot of the “whys” kids have…but it’s not what I want them to know.

So we talked about some of the positives of having Monkey in our lives. We talked about how HAPPY he is, what a terrific sense of humor he has, his amazing sense of direction3. They were smiling and laughing, and how can you not when hearing adorable Monkey stories?

Then, we gave them a taste of FXS. We used Tracy & Mouse’s “Hyperarousal Experience.” After we finished the activity the 1’s (the kid’s who’d just stood and experienced this sensory overload) shared what it felt like4. One of the teachers who happened to be a 15 told us she felt angry. Bingo! Total teaching moment…it’s NICE to teach the teachers 😉

We wrapped up by giving them concrete ways THEY can help. We encouraged them to reach out, to make the effort to initiate conversations and include kids who might not be able to do it for themselves. Then we plugged a few organizations…and since we’re such big fans of them…I’m going to do it again.

The teachers were incredibly excited about L.A.U.G.H. which is exciting to me because the idea of peer driven inclusion sounds like a dream come true to this mama.

Anyway, that was that. We thought we might need 30 minutes and asked for 45 minutes to be safe…then we took an hour. The teacher said they want to continue this group next year as well with the rising 8th graders and we left our card. I think we just might go back. Not to shabby for a couple of procrastinating first-timers!

  1. Not my real name. []
  2. But I did not know this until I left the building because I turned my phone off. Really! []
  3. The boy can give you directions to the Thomas P. “Tip” O’Neill Jr. Tunnel from anywhere in the greater Boston area! And will, in fact, do so…so never trust his directions unless you want to see the Big Dig! []
  4. And asked if we could switch roles, they really wanted to exact some revenge! []
  5. Totally part of my evil plan, I WANTED the teacher especially to experience it. []

By Request

I like to give my readers what they’re looking for so I just sorted through the search terms people have used to get here…may I present, The Answers You Have Been Looking For…

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

(Sunbeam doesn’t come with wings that I can find. Are you sure it wasn’t Starflight?)

 

 

 

 

 

 

 

 

 

 

I’m sorry, do any of you actually want to be here??