Author: Melissa

I’m just here to help.

Melissa

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.

Melissa

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 Selinger ((Conference host extraordinaire!)) 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 by ((We happened to get a chance to meet some Facebook friends for the first time which is always exciting!!)). We saw the couple in the distance but didn’t get much closer than that until the lunch break when Tammy Selinger ((Conference hostess extraordinaire!)) 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!

There is always something to learn.

Melissa

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 love ((And, for the record, the beast is not Monkey but FXS!)). Honestly, after 5 years and 8 months ((but who is counting?)) 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’s ((Andy and Tammy Selinger’s daughter)) 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 option ((Hint, MELTDOWN!!!)).

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.

 

Creativity

Melissa

Not so long ago, just a smidge under two months ago to be precise, Monkey surprised Eric ((Yeah, we are going there.)) 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.

It is just as well.

Melissa

I mentioned in my last post that I had a zombie post ((It ate my braaaaaaaainnns!)) lined up but two things happened ((I am numbering these just for Kathleen!))

  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 it ((I was scared I would hit Publish on that one by mistake. It required very precise timing for publication!)).

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…

This one shouldn’t hurt anyone’s head.

Melissa

I have another grumpy-ass post eating at my brain but I am going to stick to fluff today. I need a break from me…

Monkey has been working really hard at mastering sight words at school. His teacher sends home copies of the books he is able to read so we can read them at home too. She also sends us a note detailing the ways in which he attempts to manipulate her to get out of doing the work and how she redirects him so we can be consistent in our approach at home. Ahem.

Clearly, he’s not reading War and Peace. The sight word books generally have 1 sentence per page and maybe 8 pages total. The sentences are also generally repetitive. “I see a cat.” “I see a dog.” “I see Mommy’s attention wandering.” That sort of thing.

Given the repetitive nature of the sentences and the fact that he’s read the book several times before we ever see it, it’s hard to know how much of it is his memorizing the story vs. how much he has actually learned to recognize the words.

Last night two cool things happened during forced story time:

  1. Caleb excitedly allowed me to read a story to him! Usually he resists and I end up having to tell him, “Sit down, we are reading.” or “No, I won’t get out! We are reading.”
  2. I was reading him a book that he is not using to learn his sight words from (Green Eggs and Ham) and I would pause during the story when I came to one of the sight words he has supposedly mastered to see if he actually recognized them in a different context and he did GREAT! I was so proud of him.

After we finished, he wanted to look at the book some more by himself. Since it was bedtime I hesitated, if we stuck to the routine I needed to say “Good night, sweet dreams, see you in the morning!” and shut off the light. It isn’t a good idea to break up a routine in general but the bedtime routine especially is carved deeply in stone, the result of many, many ((many, many, many, many, many, many, many, many, many, many, many, many, many, many)) nights of misery. I stood, hesitating, but Monkey was already absorbed in the book again. So, against my better judgement, I turned on his bedside lamp and told him, “OK, 5 minutes.” and left the room. GAH!

I went and stood next to Duhdee looking a little wild-eyed. “I told him he could read for 5 more minutes.” And then I stood there for a minute before it sunk in and then I grinned because DUDE! My kid had just ASKED to keep the book. My kid was reading QUIETLY in his bed!

When I went back in 5 minutes later he handed the book to me without complaint and told me “Off” while looking at his lamp. I told him “Good night, sweet dreams, see you in the morning!” and just as I closed the door I heard him say “in morning, money.” 😀

Does Illness Define a Child?

Melissa

I just read this article on the Huffington Post and wanted to share it. I think this is one of the reasons I have such a love/hate relationship with fragile x:

If you could somehow erase the condition, would you be left with the same child? And if you could avoid having a child with that condition, would you? Should everyone? Would there be something lost to the world if — many would use the word “when” — we can screen many in advance and reverse others after birth?

Read the entire article: Does Illness Define A Child?

I think this is particularly hard to answer given how many similarities our children share…how many of the “characteristics” of fragile x are the things we love in our kids…their humor, their often (but not always!) sweet temperaments, their ability to surprise us over and over, etc.

Would Monkey be Monkey without fragile X? If I could free him from some of the harder parts would I want to “cure” him entirely, potentially at the risk of losing parts of his personality? I don’t seem to have an answer that doesn’t come with a “but.”

What do you think? (All opinions and experiences are welcome, anonymous comments are enabled if you don’t feel safe sharing.)

I confuse myself.

Melissa

Sometimes I think my depression diagnosis is just flat wrong. I think a lot of people might think that because I’m the queen of the Public Face. I am good at hiding the fact that often I can’t say what I need to, I harbor unshareable thoughts and put out a shiny face because that’s how I cope. It’s how I keep taking step after step after fucking step.

I’ll tell you a secret though…I’m the mom of a beautiful boy, a boy I love more than anything…more than anyone…and sometimes I would give anything to be able to go back and do something, anything, to make it the way it was supposed to be.

Can I tell you another secret? Tomorrow, or perhaps even in an hour, I will want to slap myself for even thinking that because this is the way it was supposed to be. He is the child he was meant to be. I have the life, the friends, the husband, the child that I was meant to have and I love them all…I can’t imagine my life without any of them.

So, when you read here and get confused by my near constant cheerful posts and my random black-hearted posts, know this…they’re all true. I am exactly as happy and as pissed off as it seems at any given moment. Now, take a second to consider that and think about what it’s like in my head.

That should cheer you right the hell up 😉