Clouds, May 2010

Clouds, May 2010
Clouds, May 2010: This picture was taken from the car window on Route 80 in NJ. The lines in the sky are obviously from planes, but the fact that they form an "x" caught my attention. And after I snapped the pic, I noticed the cloud to the left as it looks like a boy's face.

Thursday, November 20, 2014

paw prints

This was a rough week.

Sunday afternoon H was quite lethargic & had a decreased appetite. By Monday evening the pediatrician diagnosed him with a parainfluenza virus, & thus began the first of three days of medicine horror. As grateful as I am for health insurance & access to doctors & medicine & so forth... I am not so grateful for the experience of administering anything to a child with sensory issues.

But with everyone's help we got through the week-- Dan took off on Monday, Pop Z came to the rescue on Tuesday, Pop Z came to the rescue on Wednesday, then Thursday it was Grandma Suzi's turn, & in the afternoon Dan's parents were scheduled to take over next. But then there was a water main break in the neighborhood & our water was shut off.

I had already taken off work for something on Wednesday, & another thing Thursday morning. So during my thing two appointment Thursday morning, I get a text message from my father (who was not with Hayden) that my mom & Hayden were on their way back to their house. Which, I would soon learn, was because we had no water.

After my thing two appointment I headed to work. I was a good half hour away & it took most of the drive for my brain to process everything that had happened this week, remind myself what day it was, where I needed to be next, & who was with Hayden. 

Fast-forward hours later when it was time to leave the office, & I crossed my fingers that everything would be back to normal when I got home. But as I approached our neighborhood-- (the street off the main road has two outlets--) I saw that one side was still blocked off with cones. The men were still there working, though, so that was a good sign. And then I passed the guy who checks the water tower-- (don't ask me his official title, I have no idea--) & he confirmed they were in the process of turning the water back on. "Should be about another hour," he said. This was good news because Dan would be home with Hayden in less than two.

As I approached our front door I discovered a couple of boxes were delivered. I'm only mentioning because to add to the week we had, one of the boxes was already opened. Not like it-wasn't-sealed-well kind of opened, but more like someone-cut-the-tape kind of opened. I still have no idea what that was all about (& it's kind of creeping me out), but I communicated the issue to Amazon.

Shortly after that, I checked email. For four straight days I had been sending messages to the nurse & teacher with subject headers: "HC out ___day". Not that there is ever a good time to be sick, but this week was especially sigh-worthy. We were all set to start something new with H's schedule... part of our team-agreed approach to help him through the tough 3rd grade year he seems to be having. (A separate blog post, not right now.) 

The point was to help him with the transition before the upcoming, choppy holiday week.

So much for that.

Anyway, there was a new reply to my "HC out Thursday" email, from his special ed teacher. She was sending more get well wishes & added, "we'll miss you this afternoon."


Apparently whatever she was referring to, was not part of my brain's weekly recap during that drive back to work earlier in the day. But after a few minutes of thinking about "this afternoon", I glanced over at the adorable turkey flyer on the front of the refrigerator.

It had been up there for about a week-- the flyer for the annual Thanksgiving Feast. This is the November tradition for all of the younger "classmen" at the elementary school, & one that Hayden always looks forward to. He has been participating in it since preschool, & still does, since he spends part of his day in a special ed setting with students from different grades. And long story short, this year-- partially to benefit Hayden, specifically-- a couple of the smaller special ed rooms were going to combine classes for their Feast. I mean yes, to benefit all, but it was changes to Hayden's curriculum this year which actually prompted the idea.

These little moments at school have such big benefits for him-- socially, emotionally, & developmentally. They're the perfect type of settings to help him shine.

I, however, had it in my head that the Feast was not until next week. My heart sank when I re-read the flyer, & recalled the words in her email "this afternoon". Hayden would be devastated if he realized he was missing their Feast. I quickly tore the flyer down & threw it out. Then I sent an email to the teacher asking that they try not to bring it up, what to say if Hayden is the one to bring it up, how to downplay the fact that he missed the Feast, & what to focus on instead.


Next year will be his last one before he moves on to the middle school. I'll start my prayers early that he isn't sick for any holiday. Ugh. 

But before I complete this update, I do have some good news to share...

There is something we have been thinking about for a long time. Reasons including, but not limited to, the fact that I miss having a dog, we do not like that Hayden is usually afraid of them, & at the same time he often pretends to play with a dog-- so we know it's something he wants to be comfortable with. 


We finally just recently completed the application process for dog adoption, & it was quickly approved! We feel it is an appropriate time now to introduce the idea to Hayden. I think the benefit to him would be tremendous-- for his confidence, for a sense of responsibility, & for companionship.

We are actually meeting our first prospective new family member on Saturday morning. We have also inquired about meeting more, but one of the dogs is currently out of state & will not be in the area until after the new year. Another one has two other families interested ahead of us. But the kind people at the rescue agency are researching other potential matches for us in the interim. We are optimistic & excited... I grew up with dogs & after Dan & I got married, my sister's Harlee lived with us for about a year. That was pre-Hayden, but Harlee was still around when H was younger-- she passed away shortly after Hayden's 5th birthday. We're not sure if he remembers her except from us talking about Harlee, but I do believe this is going to be great for him.  

Hayden has already said he wants to call the dog Grover. We are trying to encourage him to wait until he meets him (OR HER) before settling on a name :)



... To be continued...


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Monday, November 17, 2014

parenxiety

Things I Did Not Expect to Worry About, As a Parent:

1. My child being not able to communicate what's wrong, even if he is verbal.

2. The dreaded tracking & careful rationing of paid days off from work-- which are practically monitored like money in a bank account. And saved for just about everything. But rarely a vacation. 

3. The horror scenes that would take place when administering medication to our child.

4. Numbers 2 & 3 making me feel guilty.


5. Sensory issues.

6. Hearing a big, wet sneeze & hoping to run & catch it with a tissue before the child finds something else.

7. Having enough Plan B's for all of life's curve balls. 

8. Accepting the fact, as time goes on, that challenges will not be fewer or easier. Just different.

9. The meaning of the word "special".


10. Having my own space.  

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Sunday, October 26, 2014

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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Thursday, October 16, 2014

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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Thursday, September 25, 2014

week three

I am trying to make a better effort this year to schedule play dates for Hayden, while being mindful of the fact that he needs his own space after school. He likes his routine-- which usually involves quiet iPad time. I best be a certain distance away from him, even if it means I am just sitting a few feet away, as long as he is not seeing me move about too much in his peripheral vision.

So when I do try to schedule an occasional play date, what seems to work best is if I say, "What if we try to meet up with so-and-so at some point this week." I can plant the seed without placing any expectations on Hayden. Then on the morning of the play date, before he goes to school, his mood can help me gauge whether I should bring it up or play it by ear.

It's not that he has social anxiety, because he truly loves people & thrives from being around friends & family. With Hayden, his challenges have more to do with understanding the beginning & the end of a "task" (ie playdate), & about how long it's going to take. Not that it needs to be over before it even started-- he just wants to know what to expect (to a degree). He does not necessarily need a visual schedule either because I can tell him verbally, but he will trust that I am accurate.

So in his life in general, when things do not go as expected, he feels it.

Here we are at the end of the third week, of the new school year. And apparently I missed a call on my way home yesterday, which I realized about an hour after the fact.

There was a voicemail from Hayden's teacher & she said it wasn't an emergency & that everything was okay, but she wanted to tell me about something that happened. She also said something to the effect of... "in case he is talking about it when he gets home..."

So, apparently Hayden's day began with some difficulty. Shortly after arriving at school, he stopped at the nurse's office as usual (with his Aide) to receive one of his medications. Yesterday there was not only a substitute nurse, but one he did not know. To make matters worse, his special ed teacher was in training for most of the day & the person filling in for her was unfamiliar as well. And to trigger his anxiety even further, he would have gym class this particular morning-- a loud, busy, sensory-overloading environment which he has difficulty in, more often than not. (We do have strategies that have been effective... but long story short, his new Aide is slowly being brought up-to-speed...)



Anyway, speaking of said Aide, even though Hayden likes him the fact is they're still getting to know one another. So today, as things stood, anyone who Hayden already has an established relationship with was not readily available. That's life & that will happen from time to time & I get that.

But this perfect storm of anxiety-triggers continued to escalate until Hayden could take no more.... & he apparently placed his mouth around his Aide's arm. He did not bite down & there were no teeth marks. But he put his mouth around another person's arm.

Hayden's special ed teacher has known him long enough & well enough to realize that he recognizes his own actions. Hayden's own remorse would weigh on him much more than anything we could say. Disciplining him is not what this is about, because we would only be bringing attention to something he already understands. What we need to do is address the antecedents of the behavior & devise solutions-- which we have & we will continue to do.

That being said, the most we did today was have a calm side-dialogue when Hayden was within earshot. I told Dan the story in a normal speaking tone & I talked about Hayden, even though he was right there to hear us. Ultimately he just wants everyone to be proud of him & he, too, wants to be proud of himself. So I need not say much.

Again, changes are a part of life & they will happen from time to time. I hate that this incident happened & I know it's not really "Hayden". He just does not have an aggressive personality or any history of self-injurious behaviors, or anything of that nature. The teacher knows this, too, & she reiterated the aforementioned to the Principal as well. Yes it breaks my heart but if I can take away one thing from all this, it's exactly what everyone else should see, too:

That my insistence for regularly scheduled progress meetings... my letters to administrators... my presence at Board meetings (dry-eyed, or not)... my fragile x talks with staff... my fragile x talks with classmates... my distribution of Hayden's Positive Student Profile... my regular sharing of input from specialists... my dedication to maintain as much consistency for Hayden as I possibly can... is all for a reason.

That's the thing about advocacy efforts for your kid-- if you're going about it the right way, they're actually in everyone's best interest.


To paraphrase the well-known quote...In the end, everything will be okay. Until then, it's not the end.

--

Friday, September 19, 2014

the conclusion

It took me three blog posts to summarize the week we had & I thought that was the end of it. But here I am on my fourth update, because my Friday started out with an unexpected text message.

Just to rewind back to the week before Labor Day for a minute, that was when I returned home mid-vacation to go to work for a couple of days. But more importantly, I was determined to head back to Jersey so I could meet with Hayden's new third grade teacher. I literally drove home one night in the middle of the week, leaving my spouse & child at the vacation rental with the rest of my family. Not a very Cara-thing to do at all.

But there was a new hire orientation at the school that week, so I knew H's teacher would be there. When I stopped at the school the one afternoon, I also happened to run into his former Aide (of six consecutive years, who we did not know, would not be working with him this year). I spoke to her for just a moment but she mentioned that she did not know either, about Hayden's Aide. I believed her of course, & then I asked her if she would come to the fx faculty talk the following week (it would be on a teacher in-service day). She said she would be there. 


Well, you already know what that turned into, because I covered it a couple of posts ago. And you also know that she-- his former Aide-- was not there.

The next time we saw each other after that, was at the first Board of Ed meeting of the 2014-2015 school year. And again if you've been following this week's craziness, then you already know what that turned into, too.

Anyway, the text message was from her, & she said she wanted to get together to talk. Very long story short, we decided to meet at the park because I would have to bring Hayden. This way he could be busy playing & hopefully not listening to us. I acted surprised over "running into her" so he wouldn't sense anything.

One of the first things she said to me was, "My heart goes out to you-- to both of you--", meaning me & my friend who also spoke at the Board of Ed meeting. Then she sort of filled me in on a timeline from late Spring through August.

I learned a few things to say the least, some of which I can share & some of which I can not, but as we spoke a couple of previously hazy details certainly became clearer. For example, on the day that I went to the school for my fx talk with faculty, the Aides were actually dismissed early. Furthermore, supposedly the next morning when they were going over the agenda for the 2nd & final teacher in-service day, my name was on the schedule in the afternoon. But when the Principal got to that part, she said to cross it off because that had already happened. Clearly something we have to get straightened out for the future.

I am ultimately very thankful & very grateful that his former Aide took the time to clarify some things, & get a conversation going to clear the air... & I know she practically loves H like one of her own... & I am glad they still see each other during the school day.

But now that I know more, & I have a better idea of everyone's perspective... my suspicions are unfortunately confirmed that there were definitely some missed opportunities for communication.

At the end of the day, though, as I said in my text message to her after we met up: "I know there are a lot of people who look out for H & will do right by him, even if they don't have to."

To which she replied, "You know as H would say, He's the best kid EVER!"

Can't argue with that.

--

back to school night

So, I made it to Back to School night & I did not have a paper bag over my head after all.

Shortly after we arrived I actually saw the Principal & interim Superintendent speaking near the doorway of the gymnasium, so I (gulped & then) went over to them to say hello.

With a smile, I thanked the Superintendent for "putting up with me" the other evening. But quite honestly he simply looked at the Principal (who had not been at the Board of Ed meeting), pretended to wipe under one of his eyes, & said they were all almost like that. Then he asked me if she (the Principal) had a copy of "the brochure" (Hayden's Positive Student Profile). I had distributed them to the BOE members when I was finished crying. I mean speaking.

She & I answered yes at the same time, because I had already given her one when I was at the school speaking with faculty about fx. But I have to say I was SO honored that he (the Superintendent) had actually read Hayden's "brochure"!


Anyway, so after the welcome meeting the parents all dispersed to their children's classrooms. We visited Hayden's Gen Ed teacher first, & listened all about what the third graders would be up to this year. Much of the discussion revolved around areas that are far beyond Hayden's academic level, but he is still a part of the class & for Back to School Night we were too.

Then we visited with the Special Ed teacher, who has been working with Hayden since before he even transitioned out of Kindergarten. This evening was our third Back to School night since he started in that program. And I will tell you that two years ago when H was in First Grade, I was one of three parents who visited the Special Ed room on Back to School night. Then one year ago when H was in Second Grade, I was the only parent who visited the Special Ed room on Back to School night. This year... Third Grade... once again Dan & I were the sole attending parents.

I get that it's tough for many parents to orchestrate childcare coverage, in order to get to the school for events such as these. Everyone's circumstances are different & that goes without saying.


However, for those who could make it to Back to School night & don't... I think it's sad. I mean truth be told for me I am selfishly glad because it's as if I get my own bonus Parent-Teacher conference. Hey, if no one else shows up to the Special Ed classroom, then naturally we just talk about Hayden!


But the thing is, for the parents who could be there & just aren't... I think they are shortchanging their kid. Any time I am at the school I learn some of the most fantastic details about Hayden's day. Perhaps my motivation to be involved in Hayden's education is partially because I was raised the daughter of a special educator... but whether or not growing up a teacher's kid is part of it... or if it's just my friggin anxiety that drives me to maintain any sense of control that I possibly can... either way... I go, we talk, & I feel better. About everything.


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