eggs are just like pumpkins

A couple of weeks ago the daily notes in the parent-teacher communication journal started to become concerning.

Hayden has been agitated & refusing to comply at school-- not every hour of every day, but enough that they're noting the difficulty. We are not seeing so much of this at home so obviously we need to get to the root of what is bothering him at school. (I mean yes there are times when his behavior at home is difficult, but it's not any more or less than before.)

The major change this year versus previous years is that he has a different Aide, but I'm hearing that Hayden is overall doing well with this person. So as usual it's quite challenging for me to chime in because I am not there with him during the day. 


Progress meetings are a regular part of our school year (per my request), but tomorrow's meeting is going to involve a relatively difficult conversation. Hayden started a new behavior of mimicking shooting someone. He puts his hands together, isolates his pointer fingers to mimic the gun, & says some pretty awful phrases to go with (having to do with killing & dying). 

I don't know where he got that from, but to be honest I'm not sure how much I care. What I do know, is that we need to focus on what is actually upsetting him. And we need a solution as to how we are going to correct it. Because he can not be doing that in front of, or worse, towards other children. 

Some days he has a good morning & a tough afternoon, & some days he has a tough morning & a good afternoon. And apparently his disposition at home in the morning, for example, is not necessarily any reflection of his mood when he gets to school. Likewise, when he leaves school sometimes the note in the journal is completely backwards to his behavior in front of me.

We're supposed to look for patterns but sometimes there aren't any. Sometimes, it's just the fragile x.

Anyway, I did my weekly grocery shopping today & I also picked up some plain ready-to-bake sugar cookies for Hayden. When it comes to his sweet tooth there is not much variety to his preferences, but he has quite an appetite for whatever does make his list.

I ended up baking them this evening when I realized that I had nothing to bring to our meeting tomorrow, & of course it's against my personal rules to show up empty handed. We have had these cookies before & although they taste good, they are blah-looking. So for purposes of sharing with some of H's team tomorrow, I thought about how I could make them look better. I do have star-shaped sprinkles (not even sure why), so that was an idea but I didn't know if they'd stick. Then I remembered I had actually just bought a bag of mini minty nonpareils. Because they're minty they're pastel-colored, but I figured they would probably taste good with the sugar cookie dough.

I really don't know why my brain didn't register what was happening when I put the cookies in the oven, but I guess my mind caught up with me when I took them out. Because clearly I just made a batch of lovely, colorful spring-themed cookies which look perfectly appropriate for either a baby shower, or Easter. Just in time for Halloween.

After a minute or two of this sinking in, it became sort of funny & I decided I would just own up to the unintended spring time baby cookies. As I was taking the third tray out of the oven-- don't worry, plenty were left plain just for Hayden-- he came over to ask if they were done. I started to answer him that some were ready (i.e. cooled) & then he sneezed. Not on the cookies-- he was no where near them-- but I quickly handed him a napkin before he went for his shirt.

Then he said something that I couldn't quite make out, but it sounded like, "Ah-werjick Dad." I didn't respond to him because I was trying to translate in my mind... I were jick Dad...? No. That didn't make sense. I was certain he was trying to say something to convince me that he needed to bring cookies to Dan, so he could get away with taking more of them. I thought for sure that's what he meant, but it was not at all what he said.

He repeated himself, sensing that I was confused, but this time he said-- again, very matter-of-fact-- "I ah-werjick you guys." And then I got it. He was saying he was allergic to us because he sneezed.

I had no idea that Hayden even understood the concept of allergies-- he doesn't have any, seasonal or otherwise-- let alone that he would know or think to say something like that in a very appropriate & funny context.

I thought that was absolutely hilarious & I started laughing, so then he started laughing, & that made me laugh more... & eventually one of us had to walk away from the other. Luckily Hayden went to the other room where Dan was, leaving me in the kitchen barely able to stand up straight. I used the counter top to support myself as I tried to catch my breath. I wiped under my eyes & as soon as I could focus enough I texted my parents & Jenna to tell them what he just said. Then I went to the other room where Dan & Hayden were so I could tell him what happened.

It's all I can think about now when I look at those ridiculous Easter cookies. I am most definitely bringing them to the meeting tomorrow. There is no way I am going to do a repeat performance of what happened at the Board of Ed meeting last month. No way. Tomorrow when I am speaking with H's team I am going to look at those very out-of-place, almost egg-shaped, pastel-buttoned sugar cookies & I am going to smile.

If the cookies start to make me laugh & then I bite my tongue & that causes my eyes to tear up, I'll just blame it on allergies.

And if all goes well, I'm making a mental note to bring pumpkin cookies for his IEP in the spring time...

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what's in your future?

So, FYI, The National Fragile X Foundation is currently promoting their Membership Drive. If you are part of the fragile x community, than I gather you're already a member of the NFXF. If you're part of the fx community but you are not currently a member of the NFXF, then you best be correcting that immediately.

But for those of you who are not actually part of the fragile x community, you may be wondering why on earth you would ever become a member of the NFXF. Even if you donate every now & then, you're probably thinking that it's not necessary to become a Member.

It's not necessary. You're right. But I don't think you realize what you're missing out on. It's not just for people who are directly, personally impacted by fragile x. I am telling you that membership is beneficial for any parent, educator, or healthcare provider... or even someone who is a friend or relative to any of the aforementioned.

The support that the NFXF offers & the knowledge they bring together is unparalleled.

One of the many membership privileges is access to webinars. This evening the NFXF hosted a discussion on the topic of medication. And it wasn't just someone presenting information, but quite literally a Q&A... with The Dr. Craig Erickson of Cincinnati Children's Hospital Medical Center. It was a discussion. This is why the NFXF refers to their webinar series as "Let's Talk". And people asked, & Dr. Erickson answered... on-the-spot.

And if you're appropriately educated on fragile x & associated disorders, then you know that the benefits of this research stretches FAR beyond our community.

I am also a registered user with the global conferencing company that the NFXF works with. And I played back portions of the webinar because as I was listening, some of Dr. Erickson's words nearly brought me to tears. And I wanted to isolate them & remember them... should I ever forget why it's so important to support the people who support us... or should I ever need to remind others...

So that is why, for the first time in weeks, I decided to log into my blogger & get it all down.

Here is some of what he said. These are just excerpts, but this is why we have reason to keep moving forward: (Remember, the context of all of this is surrounding current medication options, as there is nothing specifically indicated for the treatment of fragile x syndrome. In addition, there are clinical trials...)

"Going after one neurotransmitter may not be the end-all be-all, especially for older individuals... We hope to start doing more research in that area... But I'd be lying if I didn't say it's really complicated... But I think the future of new targeted treatment may be similar to things like oncology when multiple agents are needed to treat... That may be the direction we're going.... I think it's a hopeful direction..."

"I think the big issue with the FDA is going to be safety first. I've been at the FDA talking about fragile x new treatment development & I think they're well-meaning folks that understand the need... they understand the lack of effective treatment..."

And when asked about certain clinical trials...

"What's biologically exciting is that we're able to show moving things, that are (otherwise) dis-regulated, in the right direction..."

"There are great efforts around the country... There's a lot of us out there in academia & in industry... I want to strike a hopeful chord, we're not giving up... We may need to combine things or take a different approach, but no one's really abandoning ship... We're far from that."

He talked about working through regulatory barriers & about the importance of academic science & working together with families... & he mentioned others who have dedicated their careers to helping us... Dr. Berry-Kravis... Dr. Hagerman...

"... & others that are really trying to not completely give up & look at other ways to re-tool, because we think there may be better solutions... Whether it's better outcome measures, combined therapy, whatever it may be..."

"It's important work & we're not giving up on new targeted treatments & our door is always open for consultation... to talk with providers... from around the United States & around the world... If you're interested in our research, fine, if you're not it doesn't matter-- we're really in it to improve treatment & we're doing it for the families... & I love these opportunities..."

When is the last time you interacted with a healthcare professional who is as passionate about something as you are. I am telling you that these doctors, scientists, & specialists fall in love with our community just because. You owe it to yourself to find out why.

I believe the next webinar is on Tuesday, November 11th with Dr. Karen Riley. (You can look her up-- her credentials will leave you picking your jaw up off the floor.) The discussion will be focused around Managing Meltdowns.

Who can't relate to that.

Are you a member?

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