Clouds, May 2010

Clouds, May 2010

Thursday, October 11, 2012

the talk

This little flyer was sent home with each of Hayden's first grade peers today:
My nervousness has certainly been heightened about this day. At the same time, at least my anxiousness was somewhat calmed by brainstorming different ways to be thorough about it. I wanted to make sure that if any of the kids went home and mentioned something to their mom or dad about fragile x, at least this way the parents would know what they were talking about.

I am very happy about the flyer idea and I hope that it's received well.

I introduced myself and told the kids that I was going to speak with them about something called fragile x, and about Hayden. I was happy to hear several kids acknowledge that Hayden is always smiling... then one boy said he saw Hayden "fall" down the slide at a classmate's birthday party & that Hayden thought this was funny... another boy said he remembers applesauce on Hayden's shirt (I told him that's because it's delicious)... and another girl said she went on the big trampoline at Hayden's house... and then the applesauce kid told me he can't have a trampoline where he lives... and then I tried to take a deep breath and regain control of the conversation...

I placed the book on the desk so they could see the story I was going to share-- called Special People, Special Ways-- but first, I wanted to talk about what we all have in common.

I said when we are happy maybe we want to play, but sometimes we're sad and we want to stay away. Sometimes we are hungry and we want to eat, and sometimes we are tired and we want to sleep. These are some of the ways that we are all the same-- we have feelings, wants, and needs and Hayden does too.

(That last summary point was actually something I learned when reading what other moms have used in similar presentations. I am SO grateful for all of the information out there, that other moms of kids with FX have shared.)

I went on to explain that even though Hayden looks like other kids, he sometimes acts differently because he has fragile x. I told them Hayden was born with it and he will always have it, but no one can catch fragile x-- it is not like a cold.

I explained that having fragile x means Hayden takes a little extra time to understand stuff, but he also has a very good memory. Fragile x means that he doesn't like a lot of noise, but he also loves to laugh.

We talked about Hayden being in the same homeroom as them, and how they also have gym, music, art, library, recess and other things together. But they've probably noticed that Hayden also goes next door to Ms Brady's classroom. I said this is because he learns at his own speed. I mentioned that Mrs. Sumski is there to help Hayden during the day, too. The kids all know Hayden's Aide of course, and they turned to acknowledge her. She sat in the back listening while Hayden was in speech therapy in another room. It was nice to have her there, and also comforting to catch her approving nods in the corner of my eye.

At this point I pulled out a Hess firetruck for my toy demonstration. The children were very excited when they saw it and I said this was the one from 2005. A young girl to my left excitedly added that was when she was born, and I happily said Hayden too!

I turned the different lights on the truck for them, and then they asked me if the siren was loud, and they wanted to know if they could hear it, so of course we turned that on... and everyone was definitely enjoying it. Then I pulled one of the batteries out. But I showed them how the ladder still works, and you can still turn the spotlight and pretend to shine it, and of course the truck itself will still move back and forth. Then I showed them how the back opens up and I pulled out two police cars that were hidden inside. I pointed out how it was still fun to play with, even though it was quiet.

At this time I introduced the book and after I read it, I told the children that Hayden learns just as much from watching them as he does his teacher. I made sure to emphasize when they work well in school and make good choices, Hayden notices and he will want to do the same. (Again, a great summary point which deserves a nod to other FX moms!)

I told them they can help by speaking clearly and giving Hayden time to answer, and when they see Hayden they can greet him with a high-five. I also said it's important to remember when it's time for playing games he might not understand the rules, but he will still want to join and have fun.

I told Hayden's classmates that he loves school and all of the people, and he is happy to see each of them every day.

Then I concluded by asking the children if they had any questions. One little girl said her 92-year-old grandmother wears a hearing aide (I'm thinking she meant great grandmother)... and I said my grandma is the same age and she wears one, too.

I told the children that Hayden understands everything they say, even though sometimes they might have a hard time understanding him. Then I said Hayden can hear so well it's almost as if he has 'spidey' senses... because all the different things that might be going in the room will make him turn and look. One boy said that even when he has his hands over his ears, and his fingers are close together, he can still hear when there's a loud noise. I told him that's right!

I knew we were nearing the end at this point, because this was also Fire Safety week at school; the firetrucks had already arrived and a bunch of the firemen were making their way down the hall visiting classrooms.

I thanked the children and then I gave them Halloween stickers-- the candy corn ones were a big hit, but everyone got their own sheet and there were many different designs. The teacher kindly prompted the kids to thank me and then they resumed their curriculum.

Afterwords, I stopped in the speech therapist's room to say hello to my H of course. He was ecstatic to see me, as he always is whenever I pop up at school. I offered his S.T. a brief recap, mentioned that the kids seemed pretty receptive to everything and that I thought the applesauce comment was funny. I actually told the boy who said it that Hayden brings an extra shirt to school-- to which the little boy told me he doesn't think Hayden wears it. I tried to hold in my laugh-- it was not in a mean way at all-- just very honest and funny actually. Especially because unbeknownst to him, Hayden often demands his second shirt just for an outfit change.

And then the S.T. pointed out if that's the biggest difference anyone is noticing about him-- with the applesauce-- that's pretty fantastic. Of all the other things that kids could notice, and we know they would innocently comment on if they did, it really is wonderful.

Overall the most talked about characteristic was Hayden's effervescent personality (using their own kid-verbiage of course). So not only are they a perceptive, bright group of first graders but more importantly... something tells me they are going to play a big role in keeping that very noticeable smile on Hayden's very happy face.


  1. I am impressed. How cool and calm were you! You did a mitzvah for Hayden, those other kids and the staff! Great job Mom!