There’s a reason he gets his way…

Melissa

oh, boy, is this child ever adorable *sigh*

Duhdee is cooking dinner, Grammy & Grampy have come to visit. Tonight’s dinner is homemade beef stew and it is divine. Monkey, however, is not impressed. While Grammy, Duhdee and I were in the kitchen chatting Monkey came out asking for blueberries. Alas, he had eaten all of the blueberries. His next request? Pizza. Of course.

Pizza is not an option…and we told Monkey so.

Then Monkey:

  1. Grabbed his stool;
  2. Flipped through the menus we keep on the top of the fridge ((Yeah, he’s that tall.))
  3. Found the menu for our favorite pizza place;
  4. Handed the menu to Duhdee;
  5. Grabbed Duhdee’s smart phone;
  6. Navigated to the phone icon;
  7. Held the phone to Duhdee’s ear;
  8. And said, Pizza?

It turns out that pizza was an option for such an adorable and enterprising little Monkey.

New and creative ways to drive parents nuts.

Melissa

Guess who got a letter from the special education office setting up an IEP meeting! It is that time of year, we’ve been expecting the teacher to mention it at any time now and let us know what they were proposing. It is not rocket science, right? Right.

So…it’s a bit disturbing to receive a letter that says …

  1. that the meeting is to determine Monkey’s continued eligibility for special education services, and
  2. that the evaluations were set up in consultation with us.

Mmmhmmm. OK, first, the 3 year re-evaluation was done last year and it was determined that he was still eligible for special education services. They don’t get another bite at that apple until 2013. So, they are either 2 years early or they have completely screwed up his records. Anyone want to guess which it will be ((If you guessed that they are two years early, try again!))? And, second, this letter is the first we’ve heard about any evaluations. I wonder who they consulted with? Monkey must have some legal guardians out there we don’t know about…hmmm…I wonder if they’d babysit for us?

You know, it must be really inconvenient for them when parents actually read the communications they send out…the really *itchy part of me wants to send the form back in rejecting all their proposed evaluations…instead I’ll call and nicely remind them what year it is ((No, really, I will be nice. I swear.)).

The 2012 International Fragile X Conference

Melissa

I get a lot of people searching for this! If you haven’t found the information already, let me give you the deets ((Yes, I just said “deets” I am a huge hoser.)).

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

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 Meyer ((Who I got to meet!)) 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 😉

*Cough*hack*Cough*

Melissa

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 Vaporizer ((No, I am not getting any compensation for that little bit of free advertising.)) 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 here ((Fail.))>

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 approaches ((Probably in August but my event planner SAMANTHA, has not gotten back to me on the location availability.)).

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? 😉

Not so sweet…

Melissa

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 enough ((Duhdee gets no such special treatment!)).

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.














Sweeter than maple syrup.

Melissa

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.

Melissa

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 pretty ((Red!)) 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 books ((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!))…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 cheaper ((Slightly.)) 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 😉 ((Hey, I warned you in the title!)).

 

Stop!

Melissa

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 consequences ((Nothing a dry shirt could not cure.)). Recently Duhdee was tickling Monkey, on our new big, big bed ((The big bed having moved into Monkey’s room.)), 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 mattress ((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!)).

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, “Gross ((I am actively teaching him this one!))!” like any other kid.

Sometimes I hate thinking up titles.

Melissa

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 her ((Unless she is blond and pretty, then he will be just fine.)) 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! 😉