Life with Fragile X Syndrome

Welcome to 2012! Nothing will change.

Welcome to 2012! Nothing will change.

Melissa

No money fairy is going to swoop down and deposit $1,000,000 in my account. No job fairy is going to flit through and drop a raise, promotion or career change in my lap. FXS fairies are not going to swarm my friends and family and revise what FXS has changed or return what was taken from us. It’s not going to happen…and that sucks, eh?

This is why I don’t like New Years, there is all this hype because it’s a NEW YEAR! It’s a FRESH START! Life will be so much BETTER, just wait and see! But it doesn’t work like that…ever. It sounds a bit like my inner Pollyanna has a hangover, eh? I guess I better get to the point before someone ((Holly)) kicks my ass.

Welcome to 2012! Nothing will change…unless I change it. Yesterday, as I was moping around in my PJs, it suddenly hit me that the things that have changed for the better in my life, and there are a lot, are things that I changed. I made conscious decisions and put in the work even when I felt sick to my stomach over the idea of changing. I have only ever grown as a person when I’ve put myself out there on a limb, knowing that it might snap under my feet at any second.

Why is it that taking risks have that effect? I suspect because it reminds me of something I learned a long time ago but sometimes need to be reminded of…

Today, I’m stepping out on a limb that is feeling pretty shaky underfoot already but 2012 has so much potential…I just can’t waste it by standing still waiting for a fairy that won’t ever show ((Although, if there is a money fairy, she is welcome at any time!!)).

 

Saved by an Elf.

Saved by an Elf.

Melissa

On the first Wednesday night of the month I was out to dinner with some of my most favorite ladies in the world and one of them had brought up this “elf thing.” Most of us had not heard of this phenomena. She described it in great detail and not terribly positively either, I might add. I decided the entire concept of having this “elf” creeping around your house was…creepy. I mean, really? “You never know know where the thing might turn up next!” that’s what I’m supposed to tell my anxious little, sleep challenged Monkey? Yeah, no. Definitely, no.

Then we got the confirmation that Copper’s health was about to take a serious downturn. The stress in our house ratcheted up a dozen notches with each subsequent phone call or vet appointment. I began reading reviews on books about breaking your child’s heart in one simple step. I was very concerned that I find just the right books to say what I could not seem to say on my own. It’s one thing to write it here, “Monkey, Copper is dying. Soon he won’t be here anymore and we are all going to be very, very sad.” but it’s a whole other ball of wax to look my little cherub in the eye and get those words to pass through my lips.

I needed a story, something to make it OK for me so I could try to make it OK for him. I also needed a story that did not end with, “And then his Mommy and Daddy got him a puppy and everyone was happy again!” Because…oh, fucking hell no. That isn’t the way our story is going to end ((At least, not until Mommy can get her mind around loving another dog and it not being a betrayal of the perfect, little beast who has held her heart for the last 13 years. That, my friends, will take some time I suspect.)). So, the only way to be sure that the “and they find a way to heal” portion didn’t involve anything furry was to go and look. I strolled through the book store and passed an endcap that looked a little something like this…

And I laughed, “Hahahaha!” with bitter undertones because I was there to look at books that would make me cry in public. I was not exactly shiny and happy at that moment. I read the books, I made a wise decision and I moved on.

But the crappy news did not stop, no it did not, so soon I was once again in the same bookstore looking at yet more books that would make me cry in public because 4 books was not enough to make me feel prepared ((Hey, quick interesting aside, I have discovered that no matter how many books I buy, I still do not feel prepared! Who knew?)). I had to walk past the endcap again and I found myself glancing at it out of the corner of my eye. Yes, he was still creepy but…no. I had other things to focus on, like death and dying and…*sigh*

I pulled out my phone to check an e-mail and it was a notice that I’d been tagged in a status on Facebook by the lovely Holly Roos that said “FINE. I’ll stop paying bills, get dressed and go to the damn store. Thanks Melissa Jackson Welin. ;-$” I’m not exactly sure how it all happened because we had both been pretty firmly on the “Sure it’s cute but who has time for that.” side of the Elf on a Shelf argument when I’d left my desk.

I turned on my heel ((Not stilettos, sadly)) grabbed one of the damned elves and just like that…I was suddenly one of “Them.” I would have been more embarrassed about my sudden change of heart except that Holly was right there with me, as your best friends always are. I’ve taken her excitement about it as permission to let my freak flag fly (as Paula would say). Every night since, instead of spending hours on the computer researching and counting down the days to the Day of Doom, I’ve been immersing myself in making magical moments come to life for my little Monkey.

So, fine, it is still a little creepy if you think about it too hard and, yes, everyone else is doing it too which immediately makes it uncool but, guess what? I’ve been uncool my whole life and if that’s what it takes to get my son’s face to light up each night as he wishes our little Sneak good night and then again in the morning as he calls out, “Would you look at that!” when he finds him, then so be it. He might just be a “lame” stuffed toy but there is magic in him…I’ve felt it every day since he joined us. He hasn’t worked a major miracle, I’m still sad and obsessed about what’s going on with Copper ((You may have noticed.)), but I consider it a minor miracle to feel any sort of true happiness right now…and the time I spend with Sneak, plotting, I’m truly happy. I’m going to miss the little dude when he’s gone.

 

A Good Deed.

Melissa

A few weeks ago we were asked to participate in a video social story for the fragile X clinic here in Boston. The clinic wanted something they can share with new patients to help them with their first clinic visit. It’s quite a good idea, isn’t it?

We were not their first choice. While they wanted it to be realistic, they didn’t want it to be too real, if you catch my drift. Unfortunately for them, everyone else turned them down. We were going to decline as well but, once we established that they understood that if we used Monkey it would likely be very real and that they were going to do voice overs ((so no one would hear my little darling cuss out the director)), we caved because it is a very good idea.

I then spent two weeks breaking out into a cold sweat and nearly vomiting every time I let myself think about it. There were many times that I wanted to back out but we had made the commitment and they were counting on us. So. I sucked it up.

On the morning of the filming we were running late…which is the perfect way to start off an already sure to be stressful day! After we arrived at Children’s Hospital we met with the whole crew plus the clinic coordinator and the clinic director. Already this visit was much different from our normal clinic visits. I mean, we hardly ever have a camera crew these days. Cutbacks, you know.

Monkey did really well or the first 10 minutes of us standing around and chatting but then he began to get antsy ((which is secret code for whiny)). We decided we had made him wait long enough and finally got down to work. None of what we were asked to do was unusual, it was the same things we do every time we go, but we had to do them multiple times. For example, we walked up the stairs 3 times before we headed toward the elevators.

I had been really worried about how Monkey would handle all of this and for a few minutes I thought we had just wasted everyone’s time. He wasn’t happy, he didn’t want to do the same things multiple times…until we finally got to the first set of elevators. They asked us to ride up and down several times and Monkey approved. Heartily. That seemed to break the ice for him because after that he did exceptionally well.

He even began interacting with the videographer, Adam. He was fascinated by the camera and enjoyed helping Adam set it up and break it down between locations. Now that he was fully warmed up he even started to ham it up a bit. When we had to film the check-in process he was greeting the receptionists and asking how they were doing. When I sat down to fill out forms he asked for his own pen and paper.

The one thing that surprised me most happened when we were talking to the OT. She asked us a few questions to give an idea of how the OT visit starts and while we filmed this, he sat in a chair, by himself, and quietly played with the bristle blocks. We were floored!

Of course, the whole experience wasn’t that easy. He had plenty of moments when he whined about what we were asking him to do and after 3 hours he was D.O.N.E. We tried a break and a snack to no avail. They assured us that they had enough film of him, which was good because they were not getting one more second of snot free film. That would have fallen into the category of being too real for sure.

We were all a little stressed after we left and though we had promised Monkey a ride on he Green Line as a reward he was in no shape to collect. We all went home and had comfort foods in our PJs and I even grabbed a nap.

I’m not sure how long it will be before the video is done. Monkey pretty emphatically does not want to watch it. I agree with him but curiosity will win out in the end. I’m hoping that they really did capture enough of the reality of clinic visits with a child with fragile X. I would hate for a new family to watch this and think, “Yeah, right!” but I don’t really want them thinking, “Who let these idiots in?” either. I guess we’ll just have to wait and see!

I’m not fine but I’ll be OK.

I’m not fine but I’ll be OK.

Melissa

These days when people ask me how I’m doing, I tell them, “I’m fine.” That’s what we tell people who don’t really want to know and most people, they don’t want to know. They have enough going on in their own lives, they have their own hurts and worries…they don’t really want to be burdened with someone else’s.

There are a precious few people who ask, though, who really and genuinely want to know. They know I’m hurting, that my family is heading irrevocably towards even more hurt. When these people have asked how I’m doing I’ve been telling them, “I don’t know.” Which is the truth…I’m feeling so many things, some of which make me very angry with myself, all at once and at different times of the day or phases of the moon, that I don’t really know what is going on at any specific point. When I’m asked, I have to think about it. I don’t really want to think about it. I don’t want to dig too deeply into the black caverns of my mind right now because what is lurking in there feels a bit like a bottomless pit of despair.

Right now I’m focused solely on Friday. On Friday we will take our beloved Copper to the oncologist and see what there is to be done. Right now I’m holding on to the hope that Copper will be healthy enough to attempt a treatment that might give him another 6 months or a year (I don’t dare hope for more though I’ve heard stories.) Right now I’m focusing on the fact that, although I wrote it off initially, chemo may be an option for him because they treat animals differently. It’s not an all out assault aimed at remission at all costs but rather a tactical action aimed at giving us all a little bit more of the good times.

I always thought that what I wanted was for Copper to pass easily in his sleep and I do still want some version of that but having a bit of advanced warning is turning out to be a gift in its own way. We have time to prepare Caleb for the loss of his best friend. We have time to spoil him. We have time to make sure that there is not a single regret when he does pass. I’m taking him for rides in the car that don’t end at the vet, I’m taking him to the pet store even though it takes 3 times as long with him because every bag of food must be inspected. Twice. I’m feeding him as much as he wants and he gets treats every time I pass the treat jar and he’s nearby. For a beagle mix, that’s just a tiny slice of heaven right there.

So, as much as it sucks, we’re taking advantage of what we’ve been given and keeping our fingers double crossed that maybe we will get just a little bit more…

 

Even though I won’t let my thoughts dip too closely to that pit just yet I’m not in complete denial. Should you ever find yourself in the position of having to prepare your child for the loss of their dog, the following books have been very useful for us.

 

This can be used to explain death of a pet, relative or friend. It explains that death is a part of life and that, eventually, all living things reach the end of their own special lifetimes. It’s for ages 5 and up and this is where we started.

 

 

 

 

 

 

This book is for ages 4 and up. A little boy and his dog, Corky, make a promise to be together forever and it works until one day Mike comes home and Corky isn’t there.

 

 

 

 

 

 

 

 

This one we borrowed from school, it’s for ages 4-8. It’s about loving and losing your first pet. There is an epilogue “Losing a Pet” that offers some ways of coping with this loss.

 

 

 

 

 

 

 

 

We have not bought this book yet but it comes very highly recommended by some pretty smart people. It’s for ages 4 and up.

 

 

 

 

 

 

He does belong. If you don’t believe me, ask that kid.

Melissa

I so desperately want to invite Monkey’s last IEP team leader to visit him at the new school. I want her to see what he is capable of. I want her to consider that perhaps they didn’t handle him ((or us)) in the best way possible. I want her to see that she still has things to learn.

I know this all sounds bitter but I’m really not, not anymore. Sure I have moments when we are celebrating a new achievement and “In your FACE!” pops into my head but mostly…mostly I want them to do better because there are other kids headed their way who could benefit if they saw what this school does. Which is insane, the two schools are part of the same district. They are .8 miles apart, a 4 minute drive, and yet they are years apart in practices.

What I wish she could see is what Eric described to me yesterday at pick-up. First, on the way out of the school, the principal said goodbye to Monkey and addressed him by name. That has not ever happened in any of our schools. The principals were out in the halls in the mornings and afternoons but they never knew us, they never knew him. For the first time we feel like we are part of the school and not on the fringes. That attitude, recognizing that WE too belong to this community, results in some pretty amazing experiences for a family like ours.

For example, when they stepped out the front door, Eric bumped into a new friend we needed to catch up with. While they stood and chatted a most amazing thing happened…Monkey approached some kids on the playground and engaged them in a game of chase. We see this sort of thing with his classmates but these were not classmates, in fact, when another child approached one of the other boys and asked him what he was doing he said, “Playing chase with this kid.” He didn’t even know Monkey.

This school does such an amazing job of including kids with special needs, and autism in particular, that the rest of the school just accepts them. It’s no big deal to play chase on the playground with a kid who screeches excitedly. He’s just another kid.

Lest you think this is an isolated incident, after they finished playing chase Monkey approached two boys who were playing volleyball over the main gate of the school. He stood and watched them, he loves to watch kids play, but they weren’t satisfied with that. They decided he was going to play too and made sure to throw the ball to him.

Such a little thing maybe, playing chase or ball on a playground, but the acceptance of Monkey with all his little quirks is so casual that it becomes a huge deal to families like ours. And it starts with the principal who decides that we belong and that learning Monkey’s name is important. It starts with teachers who buy into that idea and decide that creating acceptance of all students is just as important as math.

Oh, oops! We have an IEP meeting today?

Melissa

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 notebook ((We did take one, but did not take a single note.)). 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 here ((And, gosh, there are a lot of new people popping up lately!)) it might be a good quick way to figure out just who the hell I think I am ;-)**

 

The Great Christmas Tree Hunt of 2011.

The Great Christmas Tree Hunt of 2011.

Melissa

I’ve written about our yearly adventure to find a Christmas tree each year ((You will see them linked below.)). 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.

 

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.