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.

Monday, December 8, 2014

stage smile

This blog post has been brewing in my mind since I put my head on my pillow last Thursday evening,  but sharing my update got delayed due to computer issues this weekend. 

Anyway when I went back to review all of the pictures from the 3rd Grade Winter Concert, I came across one in particular which pretty much summed it up for me. 

Two years ago was the first time H was in a school concert, as a first grader. He did well in music class but as soon as they rehearsed in the gym on the risers, his participation regressed. Not that he was necessarily singing along-- or mouthing the words for that matter (even though he knew the songs)-- but at least in music class he was happy & enthusiastic, & participating with some of the movements & a few select words or phrases. 

Therefore that particular year they invited me for one the practice days, because we all knew if H joined the other kids it might only be without the big audience of the concert night. After all, the 1st Grade Spring Concert is actually combined with 2nd Grade so it would be a lot of people. 

I remember arriving at the school for one of the rehearsals & the adorable ladies in the front office kindly hid me in a supply closet (for real), so H would not catch me through the window as the students were walking by. 

Someone had clued me in to the fact that H had already gotten slightly upset & actually threw up a little bit. When the episode subsided, they gave him something to fidget with & he was a little better. 

But long story short, sitting (not standing) on the end of the risers beside his Aide is as far as his participation went that day:
I was not complaining! I didn't even know if he would make it off the gym floor & I was very proud of him for being up there & facing the big room. 

The night of the actual concert we somehow convinced him to get in the car & go to the school-- we said we were only stopping by to watch for a little bit & then we would come home. We were careful not to place any expectations on him. But once we were there, we had a little mini miracle & his Aide just sort of led him on the risers... let go of his hand... & he stood! Here he is clapping to a 2nd grader from the special ed program:

To say I was beaming with pride is a complete understatement. 

2014 was a little bit better-- as a 2nd grader, the concert would be similar to the year before with both combined grades again. Furthermore, 2nd graders actually go on first so less wait time was definitely making things look optimistic. 

And he did it. He stood on the end closest to the exit (for both sets), but he was up there. And he was proud!

He made it through the whole concert! 


One of our main concerns for this year, despite his continued progress, was the timing. Even though the 3rd graders have their own concert, so from a crowd standpoint fewer people would be better, a 7:30 start time on a cold, Thursday night when it's pitch black outside-- not to mention only about an hour shy of when Hayden is usually in bed-- would not be working in our favor. 

However, with his entourage of six (grandparents included) he was a little more motivated & up to the task. We came awfully close to a meltdown though, because he wanted to wear a tie at the last minute & I did not have one. We tried one of Dan's but it looked quite silly because we couldn't match anything up. So we left it on for a couple minutes to hopefully satisfy Hayden since he wasn't letting it go, & then finally (thank goodness) he agreed to remove it. 

His arrival at school was ultimately perfect-- he skipped right in! Literally. 

When they waited in the classroom before it started, though, it was evident he was getting sleepy. He also wore his "tired" throughout most of the concert. 

BUT 

He was up there-- (completely opposite the exit this year, too--) & he did his thing! 

No stage fright. Nada. 

Stage smile, though? Yes. 

This picture does the rest of the writing for me. This right here is what progress looks like.




At the conclusion of the concert he hugged a couple of the kids near him... shook hands with the music teacher... got an arm around him from the Principal... & last but certainly not least, as students were exiting the building, there were at least a couple of them who stopped to tell Hayden that he did great


-- 

Wednesday, December 3, 2014

sammie


The Story of Sammie

We have discussed getting a dog for a couple years now because I do miss having one, & we've always felt he/she would be great for Hayden. But I was equally concerned about the expense & the extra work. We always had a dog growing up but Dan did not, & he certainly didn't want Hayden to grow up uncomfortable around dogs too. Then while I was pregnant with Hayden, my sister's dog Harlee lived with us for about a year-- that experience pretty much converted Dan to a dog lover.

Harlee was a big black lab with an even bigger personality (albeit a great one, most of the time :) ). The two things I remember most about her, was how she absolutely loved the water-- like a magnet to it-- & for better or worse, she was very food motivated. Jenna got her after college, & Harlee was still around up until Hayden was 5, but we're not sure that he truly remembers her except for us telling him & showing him pictures. Hayden was fine around Harlee even though she was no longer under our roof by the time he was born, but then again she was here before him & also developmentally he was not exactly "5".

The other reason why I'm not so sure Hayden actually remembers Harlee, is that I can't think of a single dog he hasn't been afraid of.

That aside, Hayden is also becoming increasingly aware of the growing developmental gap between himself & his same-age peers... & coupled with his age there are going to be a lot of changes in the recent years ahead. Now more than ever is an ideal time to help build his confidence, his sense of responsibility, but also curb some of that anxiety while preserving his sociability. That is something I would never want to be compromised by any of the aforementioned-- Hayden's engaging personality has always been one of his greatest strengths. 


As everyone probably knows by now, a hound mix named Sammie officially joined our family about a week & a half ago. Our short journey to adopt her actually began with a different dog-- a chocolate lab puppy. We planned to file adoption applications with various rescue agencies, but this one light-eyed cappuccino-colored guy tugged at our hearts from the first picture. He was described as friendly & goofy but in need of basic training (not that he reminded me of anyone).

I don't even think a full day passed from the time we completed our application to the time it was approved-- with references & all. But after we inquired about the chocolate lab, we would have a week until our meet & greet with him. So in the interim we also inquired about two other dogs, both females who were fully trained & slightly older. However, one of them already had several families interested & I did not want to be third or fourth on a list. The other one would not be ready for adoption until after the new year (she was still out of state & undergoing treatment for something minor).

The day we met the chocolate lab we purposely arranged to get to the adoption center early, so there would be less people & fewer dogs... vs the day when we stopped there to fill out the application in the first place, & it was much more crowded & therefore entirely too overwhelming for Hayden.

But unfortunately the little lab who acted just like the puppy he was, was just too much for Hayden anyway. He would not go within several yards of that puppy. After speaking with the people at the adoption center who also witnessed Hayden's reaction, they asked us if we knew about Sammie.

Long story short, within the hour Sammie's foster arrived so we could meet her. The next thing I know Dan was picking up food, dog bowls, a bed... & I was writing a check.

From the moment that Hayden & Sammie met, he not only walked right up to her but calmly accepted her leash. Within minutes he started walking her through the store towards the exit! I still get choked up when I look at these pictures, & may not have believed it if I hadn't been there to see it with my own eyes.


They sat next to each other on the way home, & that was that.




So, a little background on Sammie...

They believe "Sammie Sweetie" (we dropped the middle name) was born in 2008. Based on her paperwork it appears her first home was in Georgia. Originally the rescue agency thought she was 5, going on 6 soon, but there was also a good 8-month discrepancy in her birth date between the papers from Georgia & NJ. After taking a closer look it appears she is already 6, because of the date she was supposedly spayed.

Sammie was probably with her first owner (in Georgia) for about four years, & it appears that person just didn't want her anymore-- nothing really negative was reported though. We do know after Sammie came to NJ, she was with a family who gave her up after having a baby. They claimed that Sammie growled at the infant, but the foster did not see a shred of bad behavior (nor did the rescue agency when Sammie was in their care). One thing they explained to us is that sometimes the owners will lie to get out of the adoption-- sad, but it happens.

I can tell you that Sammie has met Flora & Gabriele, & she was wonderful around both of them.


Anyway, after some grooming :) & then being examined by a vet, we were told there is no reason to doubt that she has many good years ahead of her. By then Hayden will be a teenager & better equipped to handle the next dog (when the time comes)-- probably a younger puppy who could be around through his adulthood. We also feel relieved that Sammie has a permanent home now to live out her years.
The only thing the vet said on a scale of 1 to 6-- 6 being the most severe-- was that Sammie may have a heart murmur rated 1. They believe it's probably from her teeth needing some attention, & the bacteria getting into her system. They explained how to care for her to improve the condition of her back teeth, & quite honestly if that's the worst of it then I'm grateful.

Although, Hayden's reaction to her had me sold anyway. Even before he started walking Sammie around the store (telling everyone who stopped to pet her, "That's my dog" <3 )... he was practically begging... asking me over & over again to confirm that she was our dog & we were going to take her home... & then hugging me & thanking me... & then perseverating again for reassurance... & more hugging... (you get the idea)

She is such a sweet lady & has many traits that remind me of my beloved Sugar (our second dog from my childhood). With the exception of being camel-colored & not black, nearly everything else about Sammie is familiar-- from her disposition, to the white on her chest, to the beauty mark on her tongue.

Like I said, it's only been about a week & a half but so far Sammie has made her way into our hearts about as quickly as she made her way into our home.
  

                     
                  The End Beginning.


---





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.  

--

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...

--

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.

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