Life with Fragile X Syndrome

Yesterday, Caleb’s teacher shared some photos with us of Caleb enjoying science class at school. Eric brought his phone to me, started the slideshow and my initial smile turned to sobs…mascara running down my face…can’t catch my breath…ache in my chest…sobs. He was absolutely mystified with my reaction because the photos…here look…

The photos are awesome.

Look at that face!

The concentration!

The head bent over his work!

The smile for his teacher! Pure and total awesomeness, right?

Eric was immediately just so P.R.O.U.D. of him, of how hard he works, of how far he has come, of how much he is teaching us all about what is inside of him.

But what I saw in those photos was what we have lost. What he has lost. What I saw was the little boy he could and should have been if only I hadn’t passed the wrong X to him. I saw a long life of him trying hard, harder than anyone should have to try, and still falling short of his peers. He doesn’t seem aware of it now, but I know he will be in the not too distant future. He’s very, very socially aware. He loves to do what the other kids are doing. One of these days…he’s going to know…and that’s what broke my heart. It will always break my heart.

I wouldn’t give up a single curl on that head for any amount of money in the world…and I still hate what fragile X has done to him. Seven and a half years post diagnosis and I want to be done with it. Done with all of it. I want to not even know fragile X exists. That is a pretty good explanation for being so quiet here, I suppose.

This morning, Eric and I spoke to the 3rd grade at Caleb’s school about fragile X and Caleb. We did this last October but we wanted to get in there early this year so, one week in, and we’re done. Caleb’s teacher and the other inclusion teachers were all very excited that we were coming in to do the talk.

The kids got excited when I pulled this out…

It’s hard to go wrong with a light saber as far as 3rd graders are concerned!

Before I get into the details, I want to give proper credit here…we do this because Holly Roos convinced us that it was important and because she gave us all the tools that we needed. She has, for years, shared ideas and advice on how to do this and I’m so very glad we took on the challenge. I strongly recommend checking out Talking with Students About Fragile X Syndrome. She shares her Powerpoint slides from the presentations she’s given on the topic and there is a podcast.

A couple people asked last year about what we said and I shared very generally (Dialing it down a notch) because you really do have to customize this to fit your child and your situation. I’m sharing the entire “script” I wrote out this year with commentary to perhaps spark your imagination if you’re stuck. I had NO idea what we were going to say until Monday night and this was all written last night. I am procrastinator…hear me roar.

This is color coded and printed on note cards which we carried with us. Blue is Eric, Pink is me and Purple is the free for all where we both chimed in. Anything in black is either commentary or what the kids suggested/added.

Introduce ourselves, some of you might remember that we came in last year…who here remembers? Who remembers what we talked about? (Caleb, fragile X.) This year, we are going to talk about something a little different. We want to talk about…THIS light saber! (The reaction to the light saber was awesome, there were gasps and cheers!)

This light saber is pretty cool, do one of you want to come try it? Isn’t it cool how it lights up? Shake it hard…isn’t it cool how it changes color? (We didn’t invite anyone to come up, it was too crowded, I demonstrated it to more gasps and laughter…be flexible and just go with it!) I want you to take a minute to think, what kind of game would you play with it? What would you pretend? Don’t call out the answer, just keep it in your head and remember it, OK?

Now, what if…we take the batteries out? What happens? No lights, no sound. Remember what you were going to pretend with it a few minutes ago? Could you still play that game with it? Probably, right? It might be a little different…it would surely be more quiet which I’m sure your teachers would like (more giggles)…but it would STILL be fun, right? (One kid looked a little devastated to consider the loss of batteries, which almost made me laugh.)

This light saber, with all the lights flashing and fun noises, is like you guys. You don’t have fragile X. Your brains and your bodies all work together to turn you guys into pretty awesome, fun kids. Caleb is like the light saber too, but he DOES have fragile X so sometimes his brain and his body don’t work together exactly the same way…so he’s kinda like the light saber without batteries. But he’s still pretty awesome and he’s still fun to play with.

What is fragile X, what does it mean? We get asked this a LOT by grown-ups…most people have never even heard of it. Fragile X is a genetic disorder, do you know what that means? Genetic? We are ALL made up of lots and lots of genes. They decide what color your eyes are, what color your hair is, how tall you will grow…all sorts of things. If something is genetic it means it’s passed in your genes. And we can’t pick our genes…whatever is in those genes is what we get…we can’t just decide to be taller or shorter, can we? Caleb didn’t choose to have fragile X…it’s just how he was born. It also means that you guys can’t get fragile X. You can’t catch it like a cold and you won’t ever wake up with it, OK?

So we are all lots and lots of genes and fragile X is one of those genes. It’s a gene that every single one of us has. Most of you are like Eric, you have between 5 and 45 repeats of that gene…which is just perfect and that gene does what it’s supposed to do…it makes a protein that makes your bodies and your brains work just right.

SOME of us have more repeats of the gene. I have…110! That means I’m a “carrier” of fragile X. My gene still works mostly right and it makes that protein. If you all look up at the ceiling, then look back at me…it just feels normal, right? Maybe just a little silly? If I do that…I get dizzy. It makes me feel like the floor tilted under my feet. It’s called vertigo, and I have it because I am a carrier. My brain only works mostly right. (I’m pretty sure this is Eric’s favorite line in the entire presentation.)

Then there are some people, like Caleb, who have even MORE repeats. Caleb has…does anyone want to guess? (after a few low guesses someone jumped straight to 1,000…which made me think, “Well, that escalated quickly!”) He has between 800 and 1,000 repeats. If you have more than 200 that gene stops working, so Caleb’s gene…it doesn’t make that protein that his brain and body need to work just right. He has fragile X syndrome.

So let’s talk about what that means for Caleb. We did this last year too but I bet it will be a little different because you guys have grown up and changed in the last year. So has Caleb.

Let’s list things you like to do at home (basketball, homework, art & music, hockey, origami, golf/sports, TV, play with friends, go to the park, go to the pool/beach…origami TWO kids said this, the teacher was just as surprised as we were.) Awesome.

Let’s list things you like about school. (math, art & music, gym, recess, lunch, science, writing, reading) Wow that’s a pretty cool list…I’m seeing some new stuff on here!

Now, let’s talk about this stuff…do you think Caleb likes all this stuff? No, probably not all of it because everyone likes different things, right. Do you think he’d like (Go through the lists, deciding if he’d like it or not and why he might not.)

You know what I’m seeing here? I’m seeing that he’s a lot like you! (Actually one of the kids noticed this and SAID IT FOR US! I could have cried!)

But there ARE things that he does that are different, right? Let’s list some of those…let me start! Let’s look at this light saber again. Do you think Caleb likes this? He’s actually a little bit scared of it because it is SO LOUD! One of the things that’s different about him is that he doesn’t like loud sounds. He has like super-powered hearing and loud things like this…they are scary. So let me fix this while you talk. (I sat down and stuffed cotton balls in the end to dampen the sound while E wrote out the next list.)

Let’s list some of the things about Caleb that are different (He covers his ears with his hands, calm body (lack of), plays by himself (it was declared when we got to this point that he DOES NOT play by himself, he plays with other kids now), makes funny noises, flapping his hands…we tried to  suggest ways they could help. Eric, very brilliantly, asked them to flap their hands and describe how it felt. We talked about the fact that Caleb likes that feeling, several kids liked it too, lol. This was the LONGEST part of the presentation; once the kids got started they asked tons of questions. One girl asked about the dentist, another asked if he gets stuck on words like he gets stuck with song lyrics in his head, lol)

You know what, we had a really long list of ways he’s like you but only a few ways he’s different, don’t we? He’s a lot more like you than he is different! Isn’t he? It’s OK to notice that he does things that are different. If you ever wonder why he does something the way he does, it’s OK to ask a teacher about it or you can ask us. So while it’s ok to notice and to ask, I sure notice sometimes! It’s not EVER OK to make fun of him, it’s not OK to make fun of anyone who does things differently…OK? (One of the kids asked here if Caleb gets mad when other kids make fun of him, I pointed out that he has feelings just like everyone and it would hurt his feelings just the same way. Then I asked the kids if they’d ever seen Caleb mad? Nope. I pointed out that Caleb is a pretty happy kid and likes to laugh, he doesn’t get mad very often. And he doesn’t, thank goodness he’s more like Eric here!)

We heard from your teachers last year that you guys did a GREAT job at learning and at being friends with Caleb and we want to thank you for that…and we really want you to keep up the great work. I’ve noticed that he’s changed in the last year, he’s learning new things all the time and a lot of that is because of you. So I want you to pay attention to your teachers, work hard and make good choices because he’s watching you and learning and we want him to make good choices too (I threw the “good choices” in based on some discussion prior to our talk between the teacher and a couple students who apparently haven’t made very good choices in friends in the past and had to be separated this year. It’s a very good point to make and I’m glad I was reminded of it.)

Now, I want to talk about this light saber ONE more time. Two of you here know where Caleb got this…where did he get it? At the circus. Last year Peter and Jesus Enrique went to the circus with Caleb for his birthday. It was the FIRST time Caleb was able to go and sit through a circus like other kids when they didn’t lower the sound or make the lights less flashy. He didn’t do it exactly the same, did he? He had to use his iPad a lot…but he did it! And he talks about going back all the time. He never could have done that without Peter and Jesus Enrique there to help him. His friends, you guys, make ALL the difference in the world.

I pushed the button on the light saber again to demonstrate how quiet it was now. Do you think Caleb likes it now? (Lots of nods.) Yep, it’s a lot quieter…can you hear it? (A girl in the back shook her head.)

We then thanked them and started to say good-bye when one of the boys said, “Are you going to leave it that way?? With the cotton?” Ha! Yep, because it’s just the way Caleb likes it.

After we left the room we stopped outside the door out of sight and listened to the teacher take back over. She talked about how Caleb is still getting used to her so it’s hard for him to talk to her. She said this is where they could be helpful, because Caleb knows them already. *AWESOME*

This was just too much fun. It took about 45 minutes, with the biggest piece of that being the question and answers part. I was a little nervous before but once we got going it was pretty easy…and it was really, really fun to hear how the kids see him. They really do understand him and like him.

Now it’s your turn! If you’ve ever done this, I know a lot of you have, I’d love to hear what you shared…we do need to do this again next year!