Clouds, May 2010

Clouds, May 2010

Tuesday, December 30, 2014

you're it

One very awesome detail I failed to mention about the night of the 3rd Grade Winter Concert actually happened afterwords, during a chance conversation in the parking lot.

There's a young boy in Hayden's grade-- from a different class-- who has befriended him this year. I had been hearing about J & was finally able to meet him on Halloween.

Side note, speaking of Halloween-- shame on me for not blogging about Hayden's awesomeness in the school parade! And his UPS costume was the biggest hit! Complete with his hand truck of boxes... playfully addressed to all of his favorite dudes from TV:




The Counting Cars box was purposely, prominently displayed at the top to satisfy Hayden's last-minute change of mind. You see, after his UPS "costume" was all set--(it's real, thanks to Aunt Dana who was able to get it from a friend & former coworker--)  Hayden decided he wanted to be Danny instead (from Count's Kustoms).

It was then that I got the idea for Hayden to pretend to be shipping to Danny, & that might be a way to incorporate The Count into H's costume... without having to change his costume. I eventually thought why not just add boxes for all of his favorite guys from TV! Furthermore, the following week or so after Halloween, I emailed Count's Kustoms to share a couple of pics with them. They loved hearing about H's costume & sent him a whole bunch of stuff in the mail! T-shirt, keychains, magnets, tattoos, stickers... the works!

Awesome-est Halloween ever.

So anyway, as I was saying Halloween also allowed me a chance to meet H's new friend J. He is adorable & very sweet. Fast-forward a little more than a month later to the night of the 3rd Grade Winter Concert. W
e're in the parking lot heading back to the car after, & we see Hayden's new friend. Then I noticed who he was walking with & I recognized his mom! Both of us are volunteers on a local Foundation, but neither one of us realized who the other one was.

After a very funny reciprocal exchange of "I didn't know you were his Mom!" ... we were thrilled to have "met" & put the pieces together.

So it turns out that J's birthday was actually coming up. His party was scheduled in just a couple of weeks. The thing is... it is inexplicably important to help shape friendships with H's same-age peers & encourage his inclusion in activities-- particularly ones outside of school-- are immeasurably beneficial to Hayden's growth & development. All birthday parties are a great opportunity for Hayden in general, because he is very social by nature. But at this age there are also fewer of them. So
needless-to-say we were SO EXCITED to get the invite-- especially with this one being a birthday party for his new buddy J.

T
here are some things I would have to think about ahead of time, though. For example, Hayden tends to eat at atypical times & his meals throughout the day are extremely important for helping to balance his mood (not to mention, getting medication in). But it turns out for this particular party, that wouldn't be all...

I took a closer look at the invite & saw the words: Laser Tag Party.

(Insert imaginary sound of Pac-Man dying.)


Try to imagine how a toddler might react to a dark room, with blinking & glowing lights, very loud sounds, & people who are wearing combat-style gear running around, while aiming dangerous-looking objects at one another. And try to imagine how you would explain to the toddler, that this is just for fun. 

Now imagine that the toddler is the size of a 9 year old, has a tough time with transitions, needs to understand a beginning & an end, how long something will take, & has difficulty regulating sensory input. In other words, they have sensory processing disorder which could range from causing them to overreact, under-react, simply become fixated, or potentially not notice something at all. This also includes difficulty with food textures, by the way.


But never mind the refreshments menu, how would their brain interpret an environment such as laser tag? What behavior might the child exhibit if the environment was just too much? Not to mention how might other kids react to this behavior?

As parents to a very unique child our anxiety was certainly heightened over this one. We didn't know what to do. Bring him? Keep him home? Try to participate for just a portion of the party? Would that be rude? It was also about a half hour away which wasn't helping. Yes it's true for many children with special needs that the more you expose them to, the better their chances for enjoying different situations. But that being said it is equally crucial to approach such situations with close care & careful planning.

Otherwise it could be a complete disaster.

It just so happens that the local Foundation I volunteer with-- which J's mom is also a member of-- usually meets monthly. We had one more meeting coming up for 2014 & it was scheduled during the weeks in between the school concert & J's birthday party. Since I do not know his mom too-too well, I figured that I would just speak to her in person at the next meeting. This way I could explain a little bit about Hayden, & she could perhaps offer insight as far as how the party might be structured. Would it be play, food, & then more play? Or just an hour & a half of play & then food? Was it just laser tag or other activities too? We looked up the facility online & they offered a lot of choices.

That was it-- I was feeling better already-- I would just talk to her when I saw her. That seemed like the best approach & I felt good about it.

Well as luck would have it we got some bad weather & the next Foundation meeting was cancelled. Oddly, at this point, I just thought fuck it. I am going to bring Hayden to that party. He likes this kid, this kid likes my kid, & we liked that kid, too! Shouldn't that be enough? (Of course in the back of my mind I'm thinking what if this doesn't work out... what's worse... coming up with a polite lie to not bring Hayden or Hayden going to the party & potentially _____ ... who knows... it's like fill-in-the-blank. Really.)

I talked about it with my family & votes were tied for bringing him vs not bringing him. So much for that being helpful.

There is one other thing-- hard to explain, but important to mention-- about the lasers. They of course look like guns & are pointed at people the same way. When Hayden is feeling overwhelmed it may turn into being upset or angry or both. One of his unfortunate new habits when this happens involves not only curse words, but also putting his hands together & "appropriately" pointing his fingers to mimic a gun. This is usually accompanied by phrases which Hayden knows have something to do with guns, & what these weapons result in. (Let's just leave it at that.) But the last thing we need is Hayden misinterpreting a game of tag as people acting out in a mean way towards one another.  

I could go on & on about this dilemma but in my heart I really just wanted to allow Hayden an opportunity to have fun with familiar kids. My fears remained present, but that's not what it came down to-- the socialization is. We waited until just a couple days beforehand, if that, to even tell Hayden about the party in the first place. This way he had some time to let it simmer, but not too much time that we would constantly have to explain when it was coming up. 

Hayden was in a good mood when the day of the party arrived & he was so excited for it. Like I said the place was about a half hour away-- not so much because of the mileage but rather due to traveling on several county roads to get there. (We are near a major highway that runs east/west, but not north/south... so those directions sometimes take longer from where we are.) #country

Mind you we are driving through areas with a lot more land than homes & at about half way there when we came to a crossing, Hayden saw a parking lot a short distance away with a whole bunch of cars (it was just a church with a lower roof line). I remember he asked if that was the party-- I'm sure he was wondering where the heck we were going. You have to remember this is a kid from school, so I think Hayden expected we'd be in the car 5 - 10 minutes. I guess they chose this place because we don't really have a similar venue near us. (There are party facilities in the area-- we're not completely in the middle of nowhere-- but no laser tag.)

Hayden was one of the last to arrive at J's party but in this particular instance that was absolutely fine. From the moment he hurried into the party room-- seriously, he was so eager I think he was skipping-- I heard a bunch of kids greet him & I knew we made the right decision.

When it was time to start the laser tag they had to first write their names on little score cards (I didn't realize this at first). J very kindly & patiently went over to H & showed him where to write his name. Hayden proceeded to draw one of the most deliberate & controlled letter H's I have ever seen him make. It was his typical crooked-style & had an extra vertical line... but I'll tell ya right now I don't think I could have possibly been any more proud. I snuck right next to him for a second, told him he did a great job, & said I would plug in the rest (which I did, adding the a-y-d-e-n). J saw me do this, but I don't know that he thought anything of it.

So next up they would gather in the little area outside of the laser tag room where the kids get suited-up, & also instructed.


I waited in the observation room (with the window) with some of the other moms, & Dan went to make sure that H was ready to start. One of the instructors knew to kind of keep an eye on H-- as did J's dad-- so for the most part, he was in there without us for practically the entire first half of laser tag play. If you can make out the one adult & two kids in the pic below, H is the blurry kid-figure on the right (J to his left):



There was a break in between the two sessions & the kids had pizza, which was perfect. For round two some of the dads joined in as well-- H's father included, of course. After the games were done they took a group pic & I don't even know how to put into words how awesome this felt for this mama <3 (Hayden is bottom-left, green top:)


So aside from one tiny thing that happened right before ice cream cake was served, everything was basically perfect. We just had a little moment of (probably) overwhelming-ness catching up with H... & when J was taking a birthday picture with his parents & siblings... our son was sort of photobombing... but not exactly in a cute way. I think Hayden was sort of confused-- may have felt like his participation in the picture was expected of him-- the same way we encouraged him to not run away before the group shot was taken. Not sure. But J & his family were unbelievably cool about it. Could not have been nicer & more understanding.

It all ended well. Hayden didn't really touch his piece of cake, which was completely expected, but he moved it around a little with the fork :). That was still participating as far as I was concerned!

The last activity-- (very busy party--) was video games! At that point we were ready to exit, & so was H, but the birthday boy was beyond thrilled to receive extra tokens that Hayden would not be using. So it was all good!

I did end up getting a cute shot of the two of them :) I am trying to keep this somewhat anonymous so in lieu of actually sharing that photo, I will leave you with a description of an adorable kid, hands in his pockets, wearing a casual closed-mouth smile, standing in front of bright bluish-purple wall, with an enormous "Happy Birthday" sign above his head, & turned slightly towards my son who is standing right next to him.

That is the image I am left with.


--

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...


--



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?





--


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.


--

Wednesday, September 17, 2014

paper bag

Last night was the first Board of Ed meeting of the new school year.

And last night was also the first time in my life that I practically fell to pieces, in one of the worst settings possible for that to happen (as far as I'm concerned).

As I already posted during the week that the students returned, we had a major curve ball thrown at us regarding an unexpected change in Hayden's one-on-one Aide (which I learned following a chance encounter, when I ran into someone at the grocery store who told me). I did not however hear this from the school district. No one ever communicated to us that the primary person who had been working with Hayden for six years, would not be paired with him for the 2014-2015 school year. Although she would still be there, she would not be working with Hayden (apparently she did not know this either). 

He has now been at this school for two-thirds of his life, & this particular person is one of a few who worked with him since Day One.


I also came to learn that a friend of ours who lives down the street, & has a daughter (with autism) in the same grade as Hayden, had an equally if not worse experience right around the same time. On the very first day of school, they found out that her little girl's Aide of four years was let go. In her situation it was a result of a contract termination with the agency, & affected a bunch of people including her. Someone however failed to communicate this to the people who should not have reported to work that day, so naturally they showed up at the school. Until they were pulled away from their respective positions, called to the front office, & you can imagine the rest.

So my friend sent an email to me & a bunch of other moms to encourage us to attend the BOE meeting together, to support one another & voice our concerns over the inexcusable lack of communication.

I said I would absolutely be there.

But the night before the meeting, when I called her to coordinate what each of us would say, she answered her cell from a bed in the Emergency Room.

Due to a possible reaction from a new medication, she was being held overnight for observation. But the following morning they would not discharge her because they needed to do some more testing.


Once I knew that she was ultimately going to be okay, I worked through what I would say for both of us. She said she would text me, but I knew it was incredibly unlikely that she would make it to the meeting.

That morning I put dinner in the slower cooker, in the afternoon I printed out two copies of my speech, & then exactly one hour & three minutes before the start of the BOE meeting, I got a single-word text from my friend:
"Going"

As relieved as I was on the one hand that we would be there together, I was equally anxious as evening fell. So I took a few minutes for myself as my nerves started to creep up on me & I went in the bedroom, locked the door, & collected my thoughts.

I came out with my game-face on & ready to do this. I was already gathering my keys, purse, etc, when Dan had just finished helping Hayden with his bath. After he stepped out of the bathroom with his robe on & a towel draped over his head, about a minute later he threw up. I will spare you the details but basically my exit was delayed quite a bit & Hayden had to get back in the shower. 

Needless to say (probably), I arrived at the meeting with a little extra anxiety.

However, it turns out that Hayden's Special Ed teacher was there... and... Hayden's former Aide... and... her daughter, who used to be Hayden's sitter (she was taking notes for a class assignment).

I. Was. Not. Expecting. That.

Definitely one of those moments I wished to you-know-what that I would not actually know anyone in the "audience". Too late.

It's not that they were there to support me or anything... they did not know I was going to be there, either. I hadn't exactly told anyone. The new school year just started & everything happened so fast.


Anyway, before long there was a sort of difficult & borderline emotional tone in the room. One of the first few people to speak was the mom of an older student, concerned over the location of her daughter's bus stop being within a mile of a sex offender... & no one else being on that bus stop with her.


When the meeting reached the appropriate time for my friend & I to speak, she stood up first. I followed close behind in her support & also to get ready to speak next.

She was nicely put together & you would not have known how little sleep she was functioning on. She spoke in a controlled, clear tone but it wasn't until I was right near her that I noticed she was shaking. And I could see the fresh bruise on the back of her hand from the IV. And as she retold what happened on the first day of school & I thought about what that must have been like from her daughter's perspective, I knew my emotions were beginning to surface. My friend truly held her own with just a small stumble near the end of her address.

When it was my turn to speak I got as far as stating my name, where I live, & "One day over the summer when I was at the grocery store..."

And then I lost it. It was no use to even try & look at my well thought-out speech. I was too busy alternating between wiping underneath my eyes & pressing my knuckles against my lips, & trying to subtlety chew my gum hoping that the swallowing would slow my tears.


The craziest part of all this, is that the Board members were not only receptive to what we were saying, but at one point one of the members actually said he was embarrassed over the lack of communication. And another member said he would probably feel the same way, if it were his kid. And a couple of moms who are on the Board started tossing ideas out just off-the-cuff, & other Board members were asking timing questions, & what decisions are typically made when, & who should the appropriate contact be... & literally right before our eyes, there was this impromptu conversation beginning.

They could not have been any more in agreement with us. We were practically preaching to the choir & I can honestly say this was detail number two which I. Was. Not. Expecting.


And with every word that they agreed with, I felt less & less in control of my emotions, & I could only nod to thank them.

I was prepared to be persuasive. I was prepared for them to be on the defensive. But this complete & total validation of our concerns was somehow making me feel like an emotionally wounded young child finding sudden, unexpected, overwhelming hope.


When I was able to semi- pull myself together just enough to conclude, I added that I would love to be part of any appropriate conversations moving forward. And then I handed each individual Board member a copy of Hayden's little Student Profile brochure, & indicated that my contact information was on there as well.

Then I walked over to my friend, whispered that I would be right back, & without even glancing in the direction of Hayden's teacher (because I couldn't) I scurried out of the room, around the corner, into the bathroom, & hid in a stall. Within a couple of minutes I heard my friend trailing behind so I walked out towards the sinks to clean my face.

When I cry-- I mean really cry-- the whites of my eyes turn very red & their hazel centers turn very yellow. So basically I looked in the mirror & saw a dark-haired devil staring back at me.


I asked my friend if she could go back for my purse & jacket. I knew I did not want to step foot in that room again, at least not that evening. The only thing worse than being upset, as far as I'm concerned, is being upset in front of other people. 


--

Yes I am proud that we did what we did... we were the only two to speak out... & I think not speaking up is much worse because it's almost setting a precedent that these major decisions are all okay...

But I do wish that I had been able to keep my composure. And with Back to School night upon us, at this point in time I'm feeling like I want to arrive with something over my head.

The reality is I will go & I will do my best to keep my chin up... because if I ever saw Hayden struggling with his own confidence, that's exactly what I would want him to do.


It's not going to be easy but I have only two hands & I guess only two choices-- a paper bag in one fist or confidence in the other. And when I show up at next month's Board meeting, hopefully that will communicate my choice without having to say a word.

--

annual class visit


On Monday, September 15th, as the second full week of school began, I visited Hayden's third grade class for my annual fragile x chat with the students. I usually put some sort of goody bags together-- pencils, stickers, etc-- but this year I found mini playing dough with stamper lids which I thought were great. I rolled up the parent flyer, & this year I also included a kid-friendly brochure from the NFXF. The parent flyer basically says that I visited the class to talk about fragile x, how each of us is unique & fun, & that we read a book about accepting differences & encouraging kindness. The brochures I distributed have easy-to-understand verbiage about interacting with a child with fragile x.





This year I decided to begin by reading the book, & then I explained why I was there. I talked about fragile x being something that Hayden was born with & that it's not something you can catch like a cold. I said it just means that he learns things in his own time.

I asked if they noticed anything different about Hayden but I offered an example to get the conversation going. I talked about how he scrunches his hands together sometimes when he is happy or excited. There were lots of different things that the kids noticed about him such as the chair he uses, the way he "scribble scrabbles" instead of writing, & sometimes if he's having a tough time in the morning (for example) he is happy when they see him at lunch. I explained that in his mind there is so much going on when he enters a room, because he sees & hears everything at once... or if he is switching from one activity to the next... these things can make him seem unsettled. I said that it was great that they noticed these things because it means they're paying attention... & that it's okay to notice differences as long as we do not make fun of someone for them.


I said it might be difficult sometimes to see why something is tough for him. So for example if you hurt yourself & you had a cast, it's something we could all see & we would immediately understand why you were moving differently. But when you look at Hayden, it's not so easy to see why he could be having a hard time. One little boy smiled & raised his arm to show me his cast (which I hadn't even noticed), & I thought that was great. (They totally get it...)

I asked the kids about things they like to do at home or places they like to go, & pointed out how Hayden likes most of the same things, too. (His interest in the iPad is always something they have in common.) But I also wanted to offer his perspective as well, & spoke about how certain places can make Hayden feel overwhelmed. One little girl said she loves Disney, & I said Hayden loves rides, too-- but that sort of place is tough for him because there is a lot of waiting, a lot of people, & a lot going on. One boy said he likes going to his Dad's & I said how much Hayden loves spending time with family, too. And another student said they like to go to certain games (I didn't catch the team name), but I explained how Hayden went to a professional basketball game once-- he liked it for only a little while but enjoyed it while he was there. And there were many kids who raised their hand & said something which Hayden does like just the same-- such as the park, etc.

At one point near the beginning of the conversation a little girl raised her hand to tell me that she thought Hayden was a good person. I said he thinks all of you are great, too, & he learns from you just as much as he does from the teacher.

Overall it went really well-- I am always nervous about doing this every year, but afterwords I am always glad I did.



--

Thursday, September 11, 2014

re$ervation

Someone recently emailed me a flyer about an upcoming fundraiser-- I know who it came from but I do not know them well, & only knew this person for a short period of time. The fundraiser is a social event at a restaurant, so a portion of the proceeds will benefit a particular foundation. It's an organization which supports research for a rare genetic disorder that their relative has; a relative of the person who I barely know in the first place. (The genetic disorder, by the way, happens to not have anything in common with Hayden's.)  

Although I do respect the fact that there was a personal message, on the other hand, I don't love what it says:

"Cara,
I know you understand the need for research for genetic disorders. Please share this flyer with your contacts."


That rubbed me the wrong way from the get-go. This person is making an assumption that I should be interested in a cause of some kind, & furthermore, no "Hi, How are you?" or "How is Hayden?" or anything... & then asking me right off-the-bat to pass it on when I don't even know what it is.

Following a paragraph summarizing how this person's relative has handled their experience, the email concludes with,

"My [relative] wants to give back to the organization that has helped [them]. I would greatly appreciate it if you would attend the fundraiser and/or make a donation in [their] name.
Thanks,
[First & last name of Sender]"


We met one another through the local school district. For a short period, this individual was in an appropriate position to address my concerns (during one of the many times I was advocating for Hayden). My input seemed well-received & our conversation productive. I expressed my gratitude, just as I am always grateful for anyone who is receptive to the proper support for Hayden.

However I would eventually learn that none of my concerns were even followed through, despite the reassurance communicated to me. There happened to be a change in staff, but we are adults & that shouldn't make a difference. We have responsibilities even when we're passing them on to someone else-- especially if you work within the education system & this is solely for the benefit of a student. Furthermore a young child, & even beyond that, one with special needs.

When I initially saw the email I wasn't sure why I was mad... was it because I felt let down? Does that make it okay to say this person had no nerve to ask me for support? That seems mean on my part or at least unreasonable.


The truth is my standard answer when solicitors call, for example, is always the same, "All of our donations go towards foundations which support a genetic disorder that our son has." My wording may vary but the thought never changes. 

Despite the fact that I've always felt these calls are rude, I used to often send back at least a little money if I received a request for donations in the mail. I feel those are less obnoxious. Of course after I became a mom & then ultimately learned I was a parent of a child with special needs, you could say my global charitable desire sort of dwindled. My energy focused on one.


I felt, & still feel compelled, to put all of my efforts there... to the fragile x community... because my son is that community... my friend's children are that community... & if you include associated disorders my mom is that community, my aunts are that community, & (unbeknownst to him) my late grandfather was that community too.

Fragile x became a steady part of our conversations, & our lives as a whole, when I was 31 years old & my only child was 17 months of age. 

I had a lot of hope back then that there could be a cure one day. I started to learn just how big our little community is (if you know what I mean), & that our impact is actually widespread. Our future potential even more so. It's a simple equation: awareness adds up to dollars which add up to research funding, & we all know what that equals.

A part of me does not necessarily have hope for a complete cure anymore, but I do believe that the medical community will continue to discover treatments. And ultimately one that is effective enough to significantly improve the lives of people affected by fragile x syndrome.

I don't want to promote any ideas that we shouldn't support one another-- of course we should. I, myself, have encouraged people to donate to the fragile x community even if they're not literally a part of it.

After all, contributions are like handing out hope. But I guess I am reserving mine for Hayden.


--

Friday, September 5, 2014

just fine

I am fine as long as Hayden's fine.

--

Post stomach-bug, or whatever that was, Hayden had a great first day of school. His teacher said he seemed to really enjoy himself.

The morning of Day Two-- well, let me backtrack-- the evening of Day One, nighttime routine got stalled & Hayden consequently fell asleep much later than usual. This will not necessarily affect his wake-up time but on Day Two it did.

Hayden gets up on his own because he has an extremely accurate internal clock (or something). This is wonderful because he needs just the amount of sleep that he needs-- so if he's not done, he should not be woken up. But likewise if he is done, you can bet he will be ready to go about his day regardless if we are too.


I will only attempt to indirectly wake him up if we are really in a pinch. The morning of the 2nd day of school, by about 30 minutes before pick-up time, he was still out. His breakfast was ready & being kept warm, so at that half hour mark I decided it was crunch-time.

Everything went fine at first, but after he was dressed he would not sit to eat his eggs. I think he just wasn't finished waking up yet-- he wanted to relax on the floor with his iPad & that was that.


I tried prompting him, nudging him, reminding him, & so forth. Nada.

Finally I knew that the school van must have been in the driveway by then-- I didn't even have to look-- so I calmly said I would reheat his breakfast & pack it to take with him. But as soon as he saw the little container he did not want me anywhere near his breakfast plate. (By the way, it wasn't until later that I realized the van driver had in fact texted me when they were in the driveway. I think they were waiting there for about six minutes.)

Basically it was time to go NOW but at that point he sat & began eating. His precious breakfast in which I have to hide one of his meds.

But aside from that I felt horrible in that moment, because why shouldn't he be able to sit & eat his breakfast at his own pace. I think we both knew what was going to happen next, but I had to say it anyway.

So I stated that I was going outside to tell the driver that we would see her later, & that H would be on the route home. He immediately got upset & said that he wanted to go with her, but I reiterated that she could not wait for him because there were other students to pick up.

Hayden does not want to hear that, & it is not helpful for him, but that's what came out of my mouth because it was the truth. I quickly tried to fix the moment by saying that I wanted my own turn to take him to school.

I've used that line before but this time it wasn't working. So I headed out the door so the school van would not be waiting in our driveway any longer.

He was still in the house but I could hear him from outside, getting upset. I told the driver & the transportation aide what was going on, at which point H stood at our front door, consequently causing them to pull out of our driveway even slower (making things significantly worse). Anything that prolongs transitions is just. Plain. Bad. So I headed back towards Hayden because there was nothing else for me to do.

Luckily he followed me back in the house. But he was truly sad & sort of fell to his knees right in front of the television, wiping his eyes with his bare hands-- not the typical frustrated & tense kind of sad, but more as if he seemed disappointed.


When I entered the kitchen I saw his breakfast plate on the corner of the table, with most of its contents piled inside the plastic container beside it.

I don't know what it was about seeing that-- but it just broke my heart & I got this big lump in my throat. He was trying to go along with my first suggestion but he just couldn't organize his mind & body to agree quickly enough. His brain just can not do that sometimes.


Eventually something distracted him, we changed the conversation, & I drove him to school. We arrived there about a minute before the van. As I got Hayden out of my truck, I tried to recap for the new aide what happened. He tried to reassure me & nodded, & then he prompted Hayden towards the entrance. Hayden walked off with him-- not so much alongside him but near him-- with his handkerchief in his hand, & his hand near his mouth.


I did not have time to stop back home after drop-off, & before work, so  when I arrived at the office I was not quite put together. My wet hair had been pulled back in a clip & clearly forgotten, & I had flip flops on instead of shoes. Luckily today was Friday (& it's still summer weather) so it was not too big of a deal, but I definitely felt the way H had earlier-- steps were missed in my routine. I totally get it. You do feel unsettled.


Fast-forward to a couple of hours later, & I saw an email from the mom of a fellow classmate at H's school. We know them outside of school, too-- the family happens to live in our neighborhood. Well, it was a brief email to me & bunch of other parents reiterating the importance of attending the next Board meeting.

Turns out that her daughter's aide was abruptly let go. On the first day of school.

Long story short, this wonderful aide who had been working with her daughter throughout the past four years, was apparently one in a group of layoffs-- people who were contracted through one of the local agencies. I texted her after seeing the email, & then a couple of minutes later we were on the phone.


During our conversation I also explained about the change in Hayden's Aide this year, too. And furthermore, the only reason I even found out was because I ran into another parent at the grocery store over the summer. She apparently knew that all of the Aides in the special ed room were going to be different. 

Suddenly I realized just how lucky I was to have that chance encounter-- I mean even though I was grateful at the time, I was equally furious that this was never communicated to me from the school. I tried to make excuses in my mind-- new Principal, new Superintendent, new Education Consultant on the CST-- but really the lack of communication is inexcusable.

As I said in the Day One post, I think H is going to have a delayed reaction to the transition of the new Aide. For now, he is just going through the motions of being back at school & he's happy that his routine has resumed.

At the end of the day today the teacher note said that Hayden did great in health & music class, & had an awesome day.


As for me? I'm fine as long as he's fine. But clearly there's no end in sight for doing my part, to make sure it's always just so...

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