Clouds, May 2010

Clouds, May 2010

Monday, September 28, 2015

Dear Hayden,

I had to speak in front of your whole class last week. I was very nervous & felt my face starting to sweat, which only made me even more self conscious. Your teacher let me use one of her easels when I was presenting, but all I really wanted to do was stand behind it.

I smiled & tried to hide my anxiety. I had typed a rough outline of what I wanted to say & held on to that sheet of paper like it was the most important document in the world. I began reading but had to force myself to keep glancing up so the students would stay engaged.

Anyway, I know your class started learning about genes, traits, & heredity so I changed my annual fragile x discussion this year to include that. I told them I was there to chat about a genetic condition called fragile x. After I gave them a very short textbook definition about how it's not only genetic but also inherited, I then explained it more simply. I told them that fragile x is the most common form of learning challenges that can be passed from a parent to a child.


I gave them an example by sharing about your cousin. I said, "One of my nieces has down syndrome. That is genetic, but since there is no pattern of how it’s passed it is not inherited. Fragile x is inherited because I have the gene for it." I smiled, & in a very matter-of-fact way, told them your dad & I learned this after you were born.

I was still nervous. One of the boys sitting near the front looked bored & several of the kids had a crinkle between their eyebrows. Somehow I just kept going. I told them, "Speaking of genes— fragile x syndrome is the most common known single gene cause of autism." A girl in the back kind of tilted her head to the side & raised one brow. I continued looking at the class & said, "Scientists know that it’s not the only cause— there are other genetic causes of autism still being discovered— but so far fragile x is the most known cause."

One boy raised his hand & said, "But what is it?" I told him we were going to read a book to learn more. That's when I pulled out "Fragile X Fred" from my bag. I told your class it's a story about a little girl named Claire & her younger brother Fred. (The author, by the way, is an amazing mom & household name within our national fragile x community.)

I know I was looking down at the book almost the whole time, but I was relieved to have something for the students to focus on instead of my blushing face.

After we read the book the boy who had asked me what fragile x is, raised his hand & said, "So basically fragile x means you have a lot of energy." It was such a perfect observation I could have easily handed the goody bags & parent flyers to the teacher at that point, & left.

I was grateful for his excellent comment because it was the perfect segue into our next part of the conversation, about differences. I usually go first so they don't feel uncomfortable sharing. Previous years I've offered examples about you, such as: sometimes you clench your hands together near your face when you're excited, or sometimes you're jumpy, or sometimes your speech is more clear than other times.

I think it's important to talk about things I know they already notice. They should realize it's okay to recognize differences because it just means they're paying attention. The only thing that's not okay is to make fun of someone for it.

You know, other years when I got to that part they would follow my lead & raise their hand to share stuff that is different. Back in first grade, one boy said sometimes you get applesauce on your shirt when you're eating it. In second grade a little girl said she couldn't always understand what you're saying. And last year someone said that when you write it's more like scribble. So this year I wanted to explain to the kids that since preschool, you have been able to visually recognize that the letters 'H-a-y-d-e-n' spell "Hayden". And that you are such a strong visual learner with such an incredible memory, that even back then you began to recognize which names on the class job chart went beside which chore. I remember opening school valentines with you in kindergarten, & you would look at the name & tell me which classmate they were from.

But this year, just last week, when I was presenting my annual fragile x chat with your classmates & we got to the part about differences... something else happened.

Your classmates started raising their hands to tell me what they notice, but instead of calling out differences they were raising their hands & saying you're always smiling... & you're happy... & sometimes in gym if there's music, you dance... & that you laugh... & you always like to say something, & you're funny.

I felt my eyes well up a couple of times but we kept going.

Near the very end there were a handful of comments I may have stalled just a little bit trying to answer on the spot... mainly questions about how you learn to do different things... getting dressed, swimming, etc.  I did say that sometimes if you're not paying attention you might put a piece of clothing on backwards, but I know adults who do that too.

We concluded by talking about different things they like
— last year I asked them in groups to list what their favorite aspects of school are, & what their hobbies are at home, etc. This year I just bundled it all together & we made one big list. Working off of that, I pointed out the things that you also enjoy, & the kids were able to see just how much you all have in common. (I learned this idea from another amazing mom, & friend, & household name... who I also met on this fragile x journey.)


Mainly I just wanted them to know three things— I told them fxs is just something you were born with & they can't catch it— the same way everyone is born with a certain hair color & eye color. I also said that sometimes when you get overwhelmed, they may see behaviors or hear speech that is different. But lastly, at the end of the day, you like a lot of the same things as they do! (More ideas that I picked up from the excellent support of the fragile x community.)

By the end, our discussion which was supposed to be 15-20 minutes turned into nearly a half hour. And the room full of quiet, curious kids were now very enthusiastic & eager to contribute— way more hands were up than down. And even your buddy J was there visiting from the other class, because his mom had the smart idea to ask permission for him to join us. (I promise next year I will rethink talking to the whole grade... I will at least consider it.)

But I just want to tell you the very day before was when you were having a hard time at recess. And one of your other buddies at school happened to take the brunt of your verbal outburst when he was only trying to help. But you know, your peers are really great about recognizing that it's not about them. Your reactions are almost always about something else entirely— & not the person or object that you seem to be upset over. And that you do enjoy being around them, but it's very difficult for you control how your environment makes you feel sometimes... or to be able to verbally explain what's bothering you even if it's something small.

And I'm not just guessing— I will tell you how I know that they understand you. I know because that boy was one of the kids who kept talking about your likable qualities.

I have been meaning to record everything about that day. There were some other great sidebar conversations with faculty members as well. But I didn't have time to discuss my discussion (if you will), because I had to get ready for St Louis. The day after I spoke with your class I left for the biannual NFXF CSN Leadership Summit.

And you know, that's another bone I was going to pick with you... making me get on that plane when you know how much I hate to travel. I do not look forward to the idea of being locked inside of a claustrophobic tube that flies through the sky, & I don't know why some people do. Never mind all of the other features of travel which heighten my anxiety... too many to list I'd have to start another post.

However I am not going to do that because someone interrupted my thought process. It was a parent of one of your classmates who I don't even believe I have ever met. As a matter of fact, I couldn't even picture which one her son was when she mentioned his name in her email. So, I will confess, I looked up the name on social media & you pointed to which kid he was in a picture. He sure is a handsome, happy looking boy.

But anyway, here is what she wrote:

I just wanted to say how incredibly brave you are. Thank you for explaining fxs and giving the children a chance to ask questions. My son came home and told me all about your presentation. This was a great way for the children to understand that we are all different in our own ways. Beautiful message!"

Four homerooms in four years & that was the first time anyone ever emailed me. I tried to read it to daddy after he got home but when I got through the first sentence I was too choked up to continue. 

You've got some nerve inadvertently making mommy face many of her worst fears, head-on. Having to speak in front of people. Having to travel. Having to make new friends at this stage in my life— when I was perfectly content with the ones I had. And still am.

But I didn't know what else I was missing out on. I didn't know that meeting new people just because I have something in common with them, would turn into genuinely liking them. And missing them when we're apart. And building friendships that feel like family, to the point where I might not see some of them more than once a year (some even less), but when I do we honestly pick up right where we left off. 

I am still exhausted from this past week. More tired than I can remember feeling in a long time. And I am grateful for this.

I will even go so far as to say that I am grateful I experienced the 10th Annual Fragile X Mouse Races— with my fellow Summit attendees of course— hosted by the Fragile X Resource Center of Missouri. Even though I was in the same room as real, living, breathing, creepy, long pink-tailed mice... who were actually racing inside of an upright, glass-front wooden case with lanes. And not to mention the ones who had a turn on the open-top roulette table! Oh my goodness. It was so weird to me I needed a picture but couldn't build up the nerve to get close enough, so I gave my phone to a friend to do it for me.

But putting that aside it was an enormous community gathering... not only fundraising by betting on the races, but there were silent auctions, & raffles, & games, & so much more. Many high-end auction items, too-- very impressive display of contributions. The energy in the room was just exhilarating.

On that note, I wanted to thank you Hayden. Thank you for essentially daring me to put myself out there, & for making mommy a better person.

I think you have that affect on a lot of people & something tells me that will open many doors for you in life.


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