the patch

October 13, 2012
We finally got the patch on H!

We had been waiting for summer to end (between swimming, sweating, etc, nothing to affect it staying in place)... then we were waiting for a long weekend when we would be able to give it a few days... otherwise the pediatrician said it would not be enough to gauge the efficacy.

Finally before Columbus Day weekend we were going to give this a go, but H developed a nasty cold the Thursday prior. He didn't even return to school until the following Wednesday (he has never been out that many days in a row; he's one of those kids that gets an attendance award at the end of the year).

So the weekend of October 13th became our next try. With Dan attending a golf outing that Monday, we would be able to get three days in with both of us home at the same time in the morning to hold Hayden steady & apply the patch. I also wanted Day One to be when we were home & not doing much, & therefore able to really monitor him.

The patch was on for a good nine hours so for that alone I am grateful. Things started out rough because he would not sit still, so when I put the clear sticky film over the patch (the one the pharmacy had to special order which also delayed our inaugural attempt), it crumpled in one corner. It is difficult enough in itself because it is so thin... but with a moving target it's even worse. So in order to hopefully make sure the thing would still keep the patch in place, we used a second sticky square (an unforeseen detail which unfortunately made the removal process quite challenging).

After the first half hour or so he was finally OK... partially distracted by a run to DD with Gad. When we gave him a bath that evening I was able to get the patch off with baby oil gel, but it took a couple of tries. So at that point he already seemed worried about wearing it again.

However, trying to maintain the positive, the fact is we finally made progress. FIVE YEARS AND ELEVEN MONTHS after he was diagnosed... finally... some medicine in him. Hallefreakinlujah.

I tried to coach myself into accepting that whether this ends up being an appropriate treatment or not, as long as we get a few days in him we can finally say we tried this one. We would have a real point of reference & if nothing else when we see the next specialist in December, we will have one complete attempt checked off. 

As per our plan, the patch went on again Sunday morning but unfortunately Day Two (and Three) are not data-worthy. Turns out the boy who seemed a little tired Sunday was actually suffering from a stomach virus of some sort. (Conveniently, right on the heels of his nasty cold.) He missed a bit of school that week & then, to mirror the pattern earlier in the month, passed the stomach sickness along to his mom.

Finally this past weekend everyone in our home was well again. But having an important family event to attend, we didn't feel it was a smart time for more experimentation yet.

Then came Monday. Apparently there was a challenging situation at school but I would not learn about it until Wednesday.

October 24, 2012
The Principal calls me. Upon learning that the teachers hadn't yet discussed "Monday" with me, whatever that meant, he wanted to make sure I was informed.

I was told that Hayden's Aide had been injured. Today is now three days past the incident, & having spoken to the Principal, teacher, & Aide at this point I can better summarize what happened.

Hayden was completing a worksheet, had a break, & was being prompted to return to finishing his work. He was having a difficult time with this transition & began to rock the chair. To prevent him from getting hurt they held the chair still as best they could, but in his frustration he grabbed hold of the desk instead.

What I do know is that he did manage to partially lift the desk & move it, & when it landed his Aide's thumb took the brunt of the hit. Not thinking much of it, she tried to shake it off but it began to grow more discolored, swollen, & painful as the day went on.

She went to the doctor the following day & they confirmed it was a contusion. Her thumb was wrapped to limit the movement & help it heal. She is otherwise OK, & they all seem to agree it was an accident & Hayden had no deliberate attempt to injure her. More importantly, thank goodness no one else was hurt.

-----

This kind of thing worries the ever-loving crap out of me. The mere thought of someone misunderstanding his behavior... people not knowing that each behavior is merely a communication... the mere thought that another child could have inadvertently been hurt... people not knowing that my kid is not aggressive... the mere thought that there could be anyone in his life who does not realize his kind, caring disposition... people not knowing what fragile x is & how this gene can scream SO much louder than my child ever really would.

So I put a lot of faith & hope in this medicine, & I put a lot of faith & hope in the clinical studies. Especially those who have qualified for, & are participating in the clinical trials. Those who are contributing towards the development of an appropriate fragile-x-indicated treatment that these kids SO deserve.

My son does not even realize that the wrap on his Aide's thumb has anything do with a desk that he was releasing his frustration out on. But we will of course try the patch again, & this effort will be continued...
 

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.

the 1st first grade team meeting

She gave me a hug (for the third time), and then as she continued in the opposite direction down the hall she spoke over her shoulder, "Remember what I said about the coffee and a book."

Hayden's former teacher doesn't know that I don't drink hot coffee but I thanked her and asked, "Can it be wine instead?"

She turned around smiling with this expression as if to say it should be a given, and confidently offered, "I was being polite!"

One of the many topics discussed at this afternoon's team meeting was carrying over behavioral services from school to home. The 'coffee and a book' comment was in reference to allowing myself some sort of respite, even if it's while the Behaviorist is working with Hayden. Reminding me that there is both a time for my involvement, as well as a time for me to go in the other room.

It was easily 4:00 already, and here she was on a Friday afternoon stopping to catch up with me following a team meeting. A team meeting which she did not attend as she is no longer Hayden's teacher. But she is still interested, she still listens, she still offers welcomed input, and she still gives me her calming, trustworthy reassurance.

I made one more stop in the first grade classroom where the teacher was still present for a Girl Scout meeting, which was starting shortly. I said I just wanted to thank her in advance for next week, as they have accepted my proposal to briefly speak with the class about Hayden and fragile x. She seemed genuinely happy to accommodate and offered how much she is looking forward to it. I lightly added that I hope I finish before Hayden returns from Speech and sees me through the classroom door window. My short presentation is not something he should be there for, as his presence would undoubtedly cause a mutual distraction throughout the room.

When I finally exited the school building, I smiled as I replayed the meeting in my mind-- not because we sat in a room for well over an hour and shared good news with one another, but because we sat in a room for well over an hour only to discuss how to help Hayden. Period. If you are going to have challenges to solve, and you're lucky enough to have a team like his to solve them with, then you hopefully have reason to smile.

Hayden was not feeling well today and missed school as a result. As concerned as I was for him, I was almost equally frustrated over the idea of possibly having to cancel this afternoon's team meeting. It took weeks to schedule something with all necessary parties involved, and between everyone's limited availability together with my even more limited time off from from work I was praying we could still meet.

Luckily Dan made it home from work in time for me to keep the meeting, and today was just as productive a school day as any other... even with Hayden being out sick. As a matter of fact a rare, positive side effect of Hayden's absence included his Aide being able to attend the meeting as well.

As a team we discussed his recent challenges with recess time being longer than previous years, causing hyperactivity, and Hayden consequently taking it out on his Aide. So we brainstormed ideas of switching around his therapy schedule to allow only some time outside but not too much. We discussed different "jobs" he could have since he loves to help, as well as ideas for bad-weather days. On another note we also addressed oral motor challenges and appropriate options for allowing him that much-needed input, as opposed to Hayden practically eating his own shirt of course.

I was just beginning to feel optimistic about the new case manager-- keeping in mind, this is the 3rd year in a row that we've had someone new due to budget restraints which left the district with an outsourced Child Study Team-- when the topic of a calming room came up. Sometimes Hayden just needs a quiet, comfortable, dim space to simply breathe and re-regulate. This concept is certainly not a surprising, novel idea by any means-- it is something we have spoken about over the years. We know there is a need for Hayden to have access to a consistent, safe, quiet area when he feels overwhelmed. In earlier years the very well staffed and self-contained preschool program afforded him this opportunity as needed.

Well using what resources are available now, recently Hayden's Aide tried bringing him to the O.T./P.T. room when it was empty. He peacefully swayed back and forth on the therapy swing, and with the overhead fluorescents left off and only natural light coming in through the windows, she was successfully able to bring him back from his meltdown to a much-needed state of calm.

That is until certain officials got word of her being in that room alone with him and more importantly, without a certified professional. I immediately asked the team what steps I need to take to advocate for her use of the therapy room with Hayden. Clearly the idea was effective and there's no arguing that he needs it. But apparently state law dictates that only a certified staff member is permitted to be in a room with him, without any other staff present.

No sooner did someone innocently bring up the fact that his former afternoon Aide is certified and would be able to accommodate his need for the quiet space. But she was only his former afternoon Aide and was not-so-conveniently reassigned to the upper elementary school this year (rather surprising to her and everyone else I might add). So once again due to the inconsistent staffing of the outsourced Child Study Team, a very important detail was completely overlooked on an administrative level... something which a consistent, familiar case manager would not have. And the previous coverage for Hayden's one-on-one, which had been consistently successful for many years, was now suddenly and inexplicably altered. HIP HIP HOORAY! Three cheers for budget cuts. 

So aside from the absurd challenge of solving a legally-friendly calming space for Hayden, our first team meeting of the year otherwise went well. I might not be ready to sit back, relax and focus long enough to enjoy a book... but luckily there is something to be legally enjoyed here.

Corkscrew anyone?