Oh, oops! We have an IEP meeting today?

I never expected to be in a place where I would completely and utterly forget that we had an IEP meeting approaching.

After all the battles, I had become accustomed to days or weeks of preparation and fretting before each meeting. We would consult with our advocate, we would research, we would pour over every written communication since the last meeting, we would chart his progress in Excel and if you happened to be one of my SKYPE pals you had best be prepared for us to pick your brains…repeatedly….insane, right? But, that was life in this district. At every turn we expected to be told, “He doesn’t belong.” and we were never disappointed. We always needed to be able to prove that they were wrong. He does belong. He belongs with his peers. He belongs in the classroom. He isn’t an object to be pulled out at recess or lunch.

As a completely refreshing change of pace, we walked into today’s meeting questioning whether we even needed a notebook1. Given the fact that we’d reached a place last summer where we were strongly considering a tape recorder…that’s pretty impressive. We’ve been getting regular communication from Monkey’s teacher, she’s very matter of fact in pointing out the positives and the not-so-positives. When she points out a problem, she always has an idea of what to try next. She clearly finds Monkey to be an engaging, funny, lovable little guy, as all of his teachers have, but she also knows he’s smart and full of potential. She won’t wait until the next meeting to bring up a concern because that would be wasting her time, ours and Monkey’s. It’s very refreshing!

So, we walked in expecting nothing major and that’s what we got! He is making progress in all areas. Switching him from the inclusion room to the smaller room for math and substituting writing workshop is going very well. Writing workshop is more suited to his strengths so he’s less anxious in the classroom in general and becoming more social with his peers. They’ve increased his inclusion by using reverse inclusion for afternoon circle and Monkey LOVES having his friends from the other classroom come visit him on “his” turf…he shows off for them even. They’re continuing to work on ways to increase his independence.

There is one class he’s having continued struggles with though…music. So many kids with fragile x love music, Monkey is not one of them. They realized that this class is the most unpredictable of all of his specials. The teacher will randomly call on students to sing or dance and Monkey’s anxiety over being called created some issues. He would go limp noodle and try to escape, lol. They’ve given him a tool to use in that class, he can turn his “Not Ready” card over and he knows the teacher won’t call on him, and it’s working, to a point. He no longer goes limp noodle and tries to escape but, just before break, he let his teacher know he’s not quite completely comfortable in there yet.

They were standing in the hall, outside the music room, when the music teacher approached them. Monkey ducked his head and said, under his breath, “Shit, here she comes!” *snort* Yep, they’ve still got a ways to go there but I know she’s already thinking of new things to try.

**One little unrelated note, I redid my long neglected “About” page…so if you’re new here2 it might be a good quick way to figure out just who the hell I think I am ;-)**

 

  1. We did take one, but did not take a single note. []
  2. And, gosh, there are a lot of new people popping up lately! []
The Great Christmas Tree Hunt of 2011.

The Great Christmas Tree Hunt of 2011.

I’ve written about our yearly adventure to find a Christmas tree each year1. It’s one of our favorite Christmas traditions, one of the few traditional Christmas activities we can enjoy just like everyone else. In many ways, Christmas is a season that seems particularly designed to hurt parents of kids with special needs.

We don’t live in a world with happy Santa visits or excited Christmas mornings opening presents…we live in a world of sensory overload and anxiety. We live in a world where Santa is the most amazing thing EVER but going to see him is terrifying. The crush of people at the mall, the loud music, the long lines and the bells…OMFG the bells!!! Will they not stop ringing the damn bells for 30 frickin’ seconds???? Ahhhhh!!!

Christmas morning is not much better…the excitement of unwrapping a gift plus the anxiety over the fact that he doesn’t know what is in there?! Will it make noise? Will it light up? Is it a pair of damn socks? It all builds up and leads to an overloaded, crying, snot-shmearing Monkey. Not fun.

Over the years we have gotten better at managing these issues. We don’t go see Santa. We watch him on TV instead and write him a letter. We don’t “make”  Monkey open gifts. If he opens one every hour for days, that is OK. Whatever makes him happy is what makes us all happiest. But…finding ways to work around these issues and make it better doesn’t make it hurt any less. It hurts that we don’t get to see a happy excited Monkey sitting on Santa’s lap or happily opening gifts with the rest of the grandkids.

Hunting for a Christmas tree though…that’s always fun. We can do that! We’re outside, we can run and yell and scream with joy. We KNOW what will happen next! We will walk in the fields, we will cut down a tree, we will carry it to the truck, we will bring it home and Money will make it shine. Every year, just the same. Every year, it’s just as fun.

This year we bumped into a reporter from the Worcester Telegram & Gazette, he was so amused by Caleb’s obvious joy that he included us in his article, Tree Shopping.

No, there’s no mention of fragile x syndrome in that article because this is the one day, every year, when we can most easily pretend we’re just like everyone else…because we are. We’re just a family out looking for the perfect tree to bring us all joy.

And we always find it.

 

  1. You will see them linked below. []

I’m just here to help.

Soooo, I have yet another post about the conference…bored yet? It’s that or whine about how much it sucks that Monkey is sick. Again. It’s viral, says the doctor so we just have to wait it out *sigh* Poor kid.

Hmmm, looks like I whined about that anyway…so here is your reward!

On Saturday there were several vendors at the conference. One was JSGenetics, a company who is developing a swab test kit for fragile x. Any of you who’ve done the saliva test…this one is much less…*blehhhh*shudder* They were looking for people who had already had a fragile x test and had either tested positive OR negative to test the efficacy of the test kit. THIS I can handle so I brought home two of these:

One for me and one for Monkey. It’s just now occurred to me that I’m not sure *how* I’m going to convince him to let me do this…oops.

Not all that, a bag of chips and a slice of pumpkin cheesecake.

Yesterday I mentioned that sometimes I start to think that, when it comes to fragile x, “I’m all that, a bag of chips and a slice of pumpkin cheesecake.” Something happened at the conference on Saturday that left me feeling completely humbled though.

Andy Selinger1 mentioned that there was a newly diagnosed family in attendance. We were tied up at the LINKS table chatting with the other LINKS leaders and anyone who stopped by2. We saw the couple in the distance but didn’t get much closer than that until the lunch break when Tammy Selinger3 invited them to join us to talk.

The three of us sat with this husband and wife for over an hour, we were able to get Dr. Picker from Children’s Hospital to join us as well. Their son will be two this week and their story is similar to many of ours. They suspected something was wrong for months but they were turned away by doctors, they fought with doctors who didn’t know anything about fragile x for testing until finally they were able to get the referral. It’s all very familiar, isn’t it? Haven’t nearly all of us traveled this road?

What really left me awestruck about this family was this…their son was diagnosed on Thursday. Less than 48 hours later they were at a conference, learning and talking. I’m not sure I made a coherent sentence for weeks after the diagnosis I was so destroyed. I know for sure that the first 48 hours were spent crying uncontrollably. They weren’t in denial, which might be your first thought, and they were emotional but they had an inner strength that truly was amazing to see. I feel so lucky to have met them and truly inspired by they way they have faced this life changing diagnosis.

See, it’s not always the presenters who make the biggest impact when you go to a conference!

  1. Conference host extraordinaire! []
  2. We happened to get a chance to meet some Facebook friends for the first time which is always exciting!! []
  3. Conference hostess extraordinaire! []

There is always something to learn.

I’m the first to admit that I don’t know anything everything about fragile x but sometimes I start to slide a little bit towards complacency and think I know enough about this beast we live with and sometimes love1. Honestly, after 5 years and 8 months2 of living with the diagnosis, 4 years and 9 months of advocating for Monkey within the school system, 6 conferences, 759 blog posts, 5 two-day visits to the fragile x clinic at Children’s Hospital, dozens of separate doctor visits with potty training specialists, psychologists and developmental pediatricians, every book I can get my hands on and countless hours spent online researching…I’m familiar with it, you know? Sometimes I let that familiarity lull me into thinking I’m all that, a bag of chips and a slice of pumpkin cheesecake. Given my ridiculously high estimation of myself why, why, why waste a weekend of free babysitting for another damned conference? Why??

The short answer is, there is always something to learn. If it isn’t from the speakers’ presentations it will be from another parent, a conversation with a provider in the hall or an exhibitor. And if you are very lucky, you learn something new from all of those sources. Me? I’m very lucky.

I’ve talked about the one day conferences that the Fragile X Society of Connecticut puts on before. They do an outstanding job every year in finding topics that apply to wide segments of the FXS population. This is not an easy thing to do! Every single one of us is coming to a conference with our own unique needs and knowledge based on our oh-so-unique children and their varying life stages. We have unique expectations of the hotel, the conference facilities, the presenters, the hosts and even the food served at lunch. That’s an awful lot of expectations to meet and they do it so very well! Keep this in mind for next year, this is WORTH driving hours in crappy traffic. We do it every year and every year I question it when I’m in Hartford and the nutty Connecticut drivers are swerving back and forth between lanes at 180 miles/hour and I’m feeling queasy because, holy cr*p, have you driven through Hartford before??? It’s like a video game mixed with a roller coaster. Eep! And every year, the moment we leave the conference…and usually sooner…I’m talking to Eric about the fact that I can’t wait to see what they do next year. IT IS WORTH IT.

I present, our conference, in pictures.

This is what greeted us when we finally arrived.

Eric reserved two beds because…I’m not sure *but* I was very happy because I took that second comforter and used it. I ended up with 4 layers of down comforter before the night was out and that’s the best sleep I’ve ever had in a hotel *bliss*

As soon as the bags were dropped it was time for….

 

Of course. We were so hungry that we didn’t speak and/or breath again until this little beauty showed up *pumpkin cheesecake!!* It was just as beautiful when we were done with it 3.1 seconds later!

Then it was back to the room and some seriously needed zzz’s!

The next morning I had a bit of a pout fest, Eric was unsympathetic. I asked him if he’d never had any regrets before and he said, “Not about something like this…”

I didn’t think to smell them until AFTER I was done showering and then I wanted to cry because they smelled soooo good. So I stole them.

Then it was on to the conference. When we checked in I was excited to make the VIP list for the SECOND year in a row. Sure, everyone makes the registration list but I made Jody’s3 list! And…rated one of these…

Fine, Eric did too…

But I got hearts on my envelope and he rated a flower, I’m pretty sure this means I win.

Then it was on to the SERIOUS stuff…

See what I meant when I said there’s always something to learn?? Those are some seriously awesome topics by seriously smart presenters. I missed one entire session and still my head was so full that it shut down by the end of the day. Really, ask Eric what happened when he tried to get me to pick a dinner option4.

And this one is for my Eastern Mass ladies…SQUEE!

This is what we did ALL DAMNED DAY! We had so much fun!

Enough talky, I need to go pick up my Monkey in Maine. I’ve missed him so.

 

  1. And, for the record, the beast is not Monkey but FXS! []
  2. but who is counting? []
  3. Andy and Tammy Selinger’s daughter []
  4. Hint, MELTDOWN!!! []

Creativity

Not so long ago, just a smidge under two months ago to be precise, Monkey surprised Eric1 and I by developing this new skill…playing with TOYS.

We were so thrilled and after waiting 7 1/2 years I was expecting him to make baby steps in this arena…things like perhaps adding a few additional toys to his repertoire. What I didn’t expect was for him to jump feet first straight into creative play…which should have clued me in that he would absolutely go in feet first because that’s just the Monkey way!

This is one of Monkey’s favorite toys to pretend with…you may recognize these as pieces of the Discovery Toys marble run, which he loves beyond words.

He’s not using it in the usual way. He will bring it to me and put that top piece on saying “Fix it.’ and then wait for me to sing “What’s gonna work?” to which he’ll respond “Teamwork! Woahhhh!” Parents of other young kids know what this is, I’m sure. For the rest of you…

He’s found a way to build his own WonderPets boat! He thought of it all on his own and it took me a little bit to figure it out but it’s so obvious now. And brilliant too of course.

  1. Yeah, we are going there. []

It is just as well.

I mentioned in my last post that I had a zombie post1 lined up but two things happened2

  1. My self-righteous anger died after I spewed the venom into mah blawg; and
  2. I forgot the password I used to password protect it3.

So, no zombie posts! Which is good…it was très horrible.

The problem is that it appears the zombie post ate my temporal lobes first, I think “Oh, I should blog that!” and then I sit down and think “Uh, what was I doing?” *hrumph*

I’m considering “outing” myself here. I’d say most everyone knows who I am, it’s not that hard to figure out 😉 We have simply outgrown the Umma/Duhdee thing now. Obviously, Monkey is Monkey…100% but we are no longer Umma and Duhdee anywhere but here. I’m “Money” and sometimes, under rare circumstances, “Mommy” and Duhdee is “Honey” and if he doesn’t respond fast enough “Eric!!”

I guess I’m ready for a change but I don’t know which way to go. ONE thing that is holding me back, besides the general lack of brains, is this question that has always been swirling around in my brain but now with all the drug trials going on is sort of poking a little more forcefully at me…

What happens *if* we find a cure? What if one of the medications off sets his symptoms enough so that he isn’t noticeably affected by fragile x? What if a future employer Googles him and discovers…hey, this amazing candidate I’m considering hiring actually has a genetic disorder and was, once upon a time, considered intellectually disabled? Would they still hire him? Would people look at him differently?

I really wish the zombie post had consumed the “What if” portion first…

  1. It ate my braaaaaaaainnns! []
  2. I am numbering these just for Kathleen! []
  3. I was scared I would hit Publish on that one by mistake. It required very precise timing for publication! []