Clouds, May 2010

Clouds, May 2010

Thursday, April 6, 2017

week three

We're only in the third week but today was the first time that the teacher note in the communication journal wasn't overflowing with praises. Still positive in overall tone, but also inclusive of recaps during a couple of Hayden's fragile x moments. One incident at lunch which unfortunately involved another student, & a second incident in the afternoon (thankfully not involving anyone else). The teacher explained what happened next & how Hayden calmed. Worth noting that Hayden's 1:1 has been absent this week & I am sure that has had an effect on him (among everything else in his world in recent months... it's just been one whirlwind after the next for all of us). 

However also noteworthy, even after his less-than-ideal day-- while communicating with the school about something else-- the Principal actually said, "We are the blessed ones to have Hayden with us every day!"
Of course I read that & my face looked something like this (with a lot more hair):

Truth? There are some logistics to our new reality that suck. But if I had only one thing to say about it so far... they have truly begun to renew my faith in humanity & restore my expectations to help Hayden succeed. In the not-so-distant past H came home from his former school following a similar type day, & told me he had another "stupid meltdown again" & that they had to call a code green. No disrespect for certain procedures to protect the greater good, but I am Hayden's mom first. And nothing can stop the SICK feeling every time I hear his voice in my mind, uttering those words to me. In that moment I felt like it took every ounce of my willpower to look Hayden in the eyes without my own welling up... but that's what I did & I said to him, "You did not have a meltdown, you have fragile x. And where you are going, there are no codes." 

The best way to reinforce difficult behaviors in a person with cognitive impairment, is to make them feel like they are the problem. The best way to reinforce positive behaviors? Create an environment they can feel comfortable in. That is what I will remember about today. Not a meltdown, or a fragile x moment, or heaviness in my heart. But rather the day when the teacher said overall it was good. And then the Principal told me my son is a blessing.

Do you know what Hayden told me about his day today? That they rode bikes in the gym. That's not code for anything except a happy kid.


Monday, April 3, 2017

light bulb

You can post it, say it, wear it, or light it up blue. You can flash your colorful puzzle pieces & catch phrases. But who isn't aware of autism at this point? What I mean is we don't hear people say, for example, that their loved one has been diagnosed with a condition called autism... & then wait for them to elaborate with an explanation of what that means.

Awareness is at the root of understanding & is therefore crucial. But at this point a societal move towards acceptance is long overdue. Progress needs to go beyond movie theaters with sensory-friendly screenings or airport programs with special accommodations for people on the spectrum. People living with autism spectrum disorder (ASD) are not characters on a prime time TV show, they are human beings trying to function in a world that has a lot of room for improvement when it comes to understanding their needs.

Autism is called a hidden disability because it is not immediately apparent. And by that description fragile x syndrome (FXS) falls under the same category. 
While one is a behavioral diagnosis & the other a genetic condition, they are both spectrum disorders & many of the associated challenges overlap. Other hidden disabilities can be visual, auditory, psychiatric, or seizure disorders to name a few. 

Both ASD & FXS can cause behavioral challenges, difficulty communicating, global developmental delay, & sensory processing disorder. Both can affect sociability, speech, & sense of empathy (either under expressed or heightened). Both disorders often cause repetitions in behavior & reinforce an inherent need for familiar routine.

They are autism & fragile x-- described by many as different pieces within one puzzle.
While most people are familiar with ASD, they do not realize how it is scientifically linked to FXS.

If you know someone with ASD or FXS you're very lucky that you have an opportunity to understand a different perspective in life. Recognizing a date on the calendar reserved for awareness is a great start, but the reality doesn't go away the other 364 days of the year. I hope more people make an effort to turn their awareness into acceptance. Be a participant in someone else's life & allow them the opportunity to participate in yours-- it's a simple reciprocal relationship just like you have with anyone else that you know. 



Sunday, March 26, 2017

week one

What I loved most about Hayden's elementary school experience were the people. I always knew even through budget restraints, changes in administration, or so on, that the people who worked directly with our guy were just right. Resources might fluctuate but their attention to Hayden would not. They could see him as we do & as a parent that is what ultimately gave us a sense of security above anything else.

While there were people in the middle school setting who gave us a similar reassurance, they were too few. But on my way home after the first time I visited Hayden's new school I actually started crying. It was an overwhelming sense of such relief that I became emotional, albeit mixed with an equally overwhelming sense of worry having no idea how we would make this work. But in all honesty I think the gist of my upset was what had beenrepeating in my mind over & over again.... How did we get to this point.

You know the story. You know we spent the greater part of the last school year preparing Hayden for some place where we thought he'd be for the next four. Yet here we are. And the primary factors which help him feel comfortable in this world-- consistency, familiarity & routine-- are being disrupted.

So here is a recap of week one. I won't be doing this every week, but being that this was his first here I am.

The first day of Spring marked a new beginning for Hayden, too. Aside from commuter traffic resulting in our late arrival-- which luckily the regular Monday hustle & bustle inside the school itself sort of masked-- I was surprised (& relieved) how well day one turned out. The teacher's note said they had learning centers, math, & that Hayden played cars with the other boys during recess. Karate was cancelled so they had art-- not H's favorite-- but overall a very positive first day. The part of the note that nearly had me choked up was a simple sentiment the teacher added: "Have a good afternoon". Not just... here's how your son did... but also I hope you (Mom) are doing well, too

So the first morning (& afternoon) was thumbs-up but the second morning was different. I couldn't even get Hayden to close the car door-- let alone put his seat belt on-- so we could actually pull out of our driveway. He was quite dis-regulated & thrashing about. When we finally did leave at one point he suddenly reached forward & deliberately put my truck in neutral. It was scary but thank goodness (to say the least) we were stopped at a traffic light when it happened.

When we got to the school Hayden did not want to get out of the car. The Principal tried to help with some verbal prompting & then suggested getting Hayden's aide. A little while later when Hayden still hadn't exited our vehicle the teacher came outside next. Eventually she & the aid had to work together to get him out of the car. When he finally stood he literally wrapped himself around me with three out of four limbs leaving only one foot grounded to support himself. I just remember he kept pleading with me that he wanted to go home. I don't know how I held myself together, but then g
etting him through the doors required a third person to assist the teacher & the aide.

After that I didn't know what to do with myself. I circled the building & the parking lot & then decided to call the pharmacy just to give me something to do until I had the courage to drive away. I needed to follow-up about a refill anyway. But after I dialed another call came in. My phone is synced with my truck & I hit the button that I thought would automatically switch me to the new call. Instead, both calls were dropped & the second one went to voicemail. When I retrieved the message it was the Principal calling to let me know that Hayden was okay. He was not yet inside the classroom but he was in the hall, he was calm, & he was pushing his toy truck up the wall. I was beyond grateful for the update. 

At the end of the day his teacher still said it was good-- her note said, "this morning he did well... we had OT & PT... music was great, he was dancing & playing with drums... ate lunch... recess, played cars with the kids... did some more math (still trying to gauge where he's at). He also worked on a seasonal art project which I understand he was not too happy about, but he did it & apparently gave them quite a laugh when he said they work him too hard. But he enjoyed an afternoon snack & then the teacher concluded her note with, "hopefully he will get out the car tomorrow... have a great afternoon!"

Day three technically he did get out the car, but only after our second trip to school that morning. We almost arrived on time that day but when we got off the exit he vomited on himself (fragile x + anxiety + strong gag reflex). I pulled into a gas station & after depleting two travel pouches of hand wipes & almost an entire box of tissues, it was evident that we would need a sink, a washing machine, & a change of clothing for him to go to school. Sooo back on the highway we would go, but not before calling the school to explain that hopefully Hayden would be there, just later in the morning. Except I did not even have the school's phone number saved in my contacts yet.

So I quickly looked it up & the woman who answered the phone clearly did not seem to know me. This was particularly surprising because I had met the secretary several times. But speaking of time, in the interest of it, I quickly dismissed my curiosity & explained that we were right down the road but Hayden had just thrown up all over himself. So I would need to bring him back home first. It was then that the woman on the phone finally said, "Are you trying to reach the school?"

Apparently I was speaking with someone from the township-- i.e. not the front office of the school-- or even in the same building. So I'd say that conversation allowed for a mutually great start to both of our days: I tell random lady my name, my child's name, proceed to reveal the fact that he just vomited on himself, & add that we're headed back to [insert name of where we live]... while said lady gets a hefty dose of TMI, bright & early!  

Under other circumstances I may have felt humiliated for the greater part of my morning (& then some). But having driven a total of approximately eighty miles (two round trips) & finally getting my son to school a little after 10AM, I was entirely too distracted to give a shit that the people from the township knew that Mrs. Capela's Hayden threw up & would be late for school.

The only reason I got Hayden back in the car after going all the way home, by the way, was because it just so happens that Pop Z was picking him up from school that day. Barely even hesitated to reveal the surprise because I needed the ammo for follow-through! So in the future I'll have to remember to arrange that, should my child ever regurgitate again after we exit off of the highway. When all was said & done the teacher described his day with two greats, not just one-- great, great day-- & added really wonderful.

I remember some of Hayden's toughest days at the other school started out as a perfectly fine morning at home. These are the details you don't forget because as a parent when something goes very wrong, you have to be your own detective & you replay the day's events in your mind to try & make sense of everything. 
So when I think about the number of transitions that were added to Hayden's morning last Wednesday before he even stepped foot in the school building, the overall success of his day is only further evidence of what happens when a child is surrounded by the right people. 

Next was Thursday. This was actually the second morning without meds because Hayden didn't eat his breakfast at all (vs Wednesday, which was a combination of not finishing his breakfast & of course throwing up what he did eat). We arrived even later on Thursday than we did on Monday & Tuesday-- a combination of having a tough time leaving the house plus even more traffic than days prior. When we got inside the school that morning the first people we saw near the front office were the nurse & the aide. Hayden vocalized that he was late again & the nurse simply said, "You're not late, that's the thing with this school."

That is the thing-- appropriate expectations. Their day starts when they get there. We're not talking about someone in college who overslept & was late to class. These are students but they are kids, & everyone needs to keep circumstances in perspective. Once again when all was said & done, the daily entry in the communication journal began with "good day". 

Friday for the most part was less eventful & not only that, it was actually the first day we were finally on time. Although I would have been grateful either way because at least he ate breakfast that day! The teacher's note r
eiterated how excited she was that he had such a great first week. I also love that most afternoons he talks to me for part of the ride home & tells me snippets about his day-- in his own way-- but I can piece it together.

Throughout the week though, & even this weekend, he has been asking about people from the other school. For example, he thought his speech therapist from middle school might be at the new school. She had worked with him at the elementary school & was the only one who wasn't new when he got to middle school. So I understand why he put that thought together. And I know he's still somewhat confused... they had a big farewell, yet it wasn't the end of the school year... & then he started somewhere new... & there was no transition-- it was one day, & then weeks later his first day. And the commute itself is quite a bear. Not just the mileage on my truck, the cost of gas, but even worse this whole schedule is interfering with me being able to work. Furthermore we're dealing with details such as web access in the car, for a mini tablet reserved for coping with traffic, which is otherwise a major behavior trigger for him. And meanwhile it is eating up my husband's data plan. Honestly the list goes on. But unless I could interview & hand pick a driver & transportation aide myself, at this point the luck-of-the draw is too much to gamble on such a long trip to & from school every day. The last people he was paired with would rarely even say good morning when he was picked up. He is a young child with a disability & this isn't public transportation.

But as far as the people whose care he is in, I do not have any serious reservations about them. Still getting to know everyone obviously, but the fact that Hayden told me on more than one afternoon when I picked him up: school was good... I had fun....
Difficult for me to pinpoint how long it's been & to even begin to explain just how significant that is.

So I'll take my son's word for it. (Versus the voice inside me that is so proud, it is almost convincing me to share the news with the lady from Wednesday.) I don't expect that everything will be all smooth sailing ahead. I also know there are certain people Hayden does miss seeing & there's a lot that he is still confused about (rightfully so).

But good & fun...
they are a really, really great start.  


Saturday, March 11, 2017

air bubble

"Sometimes the world can feel like a room that's filling up with water. And for me to be able to think of a joke is like an air bubble. And I can take the oxygen I get into my lungs and it can carry me forward. Things can be overwhelming, and scary, and hurtful but thankfully my brain can de-scramble things and form a joke. Just for one second things slow and I can win... and it's so personal and it's something I'm so grateful for."

This is a quote from a comedian (believe it or not) & writer named Neal Brennan who has absolutely nothing to do with fragile x whatsoever, or with anything directly related to what I'm writing about. But I happened to just watch his performance on Netflix-- (which is *not* kid- or family-friendly, FYI--) & the perspective resonated with me deeply. Because when my world feels suffocating... for me... writing is my oxygen. And that's part of what has been so difficult because I've had an endless amount to say, & couldn't really communicate any of it.

The first, worst day of my life was November 20-something in 2006. That's when we first heard about fragile x. Obviously now having 10 1/2 years worth of time to let that simmer, I would not say that fragile x is the worst thing in the world. But at that time I had no context except that my beautiful, healthy boy suddenly had a very serious & very scary diagnosis.

The second worst day was near the end of the summer in 2008, when Hayden had eye surgery on both of his eyes. Over the next eight years we certainly had our share of difficulties, but prior to December of 2016 nothing quite matched those two days. Until this school year when Hayden was suspended, twice. The first time was in mid-December for five days, & the second suspension of his academic career to-date was mid-January (2017) for three days. (Not sharing anything that people in school didn't already notice.)

Most of what needed to be said has already been said, in a very diplomatic way to all of the appropriate people. So I am not going to rattle off at the mouth & smear my own personal blog with defamation-- of anyone, or myself for that matter. That is not who I am. What I will offer, in summary, is that time away from school will not change any child's fragile x behaviors. And to be honest Hayden doesn't even understand the concept of being suspended. One day when I am ready perhaps I will share the aftermath of his confusion & exactly how that manifested itself in his fragile x brain. I can tell you there were moments I didn't recognize my own son.

And if it weren't for my husband, my parents, & my sister I can promise you I would not have been emotionally strong enough to survive.

Very long story short
 Hayden needs to be in an environment in which he will be supported the same way we observed all the years prior to this school year. And very soon he will be. But while that is somewhat of a relief, the fact is we spent the greater part of the previous school year preparing Hayden for some place where we thought he would be for the next four. So I do sort of feel like I am suffocating right now... having found ourselves faced with a transition that we never would have imagined.

Obviously school decisions are very personal because they involve children, & nothing is more precious to any parent than their own child. So bottom line Hayden needs to be in a learning environment that is staffed to best meet his needs, & allow him to thrive as we've seen in the past. I know there are many other families with one or more children who go to school out of district-- Hayden is not the first & he will not be the last. But whenever I heard of in-district students attending school elsewhere, I just couldn't relate & I thought it was so unfortunate. I thought how could other families have missed out on the same level of reciprocal support that we experienced. My wish would be that everyone had an opportunity to benefit the same way we had, because quite simply it was a relationship worthy of envy. So I'd be lying if I didn't say that as of late, I am somewhat heartbroken.

But at the end of the day we are not moving, this is still our community, & the only place that Hayden has ever called home. Therefore I have no intentions of leaning back on my continued support of the school district that nurtured him through three years of preschool, then kindergarten, & beyond. Despite the unprecedented level of challenges that surfaced in middle school this year, 
that doesn't undo all the support we had in the past & hope to achieve again one day in the future.

On that note, 
I expect that the coming weeks & perhaps months will continue to be a trying time for my family. For now we are taking this one step at a time & doing our best to help prepare Hayden. We told him about his acceptance into the new school in a very congratulatory kind of way, so that he understands he ought to be proud. We even took him out to dinner at a car-themed restaurant to celebrate. 

Complete with a sparkler in a piece of cornbread (in lieu of having a plain doughnut on hand, for our non-cake, non-ice cream eating guy)

So if you see him this week, please feel free to offer him a simple congratulations & do not hesitate to tell him that you know he will do well. This has been a very confusing several months & Hayden knows it's not the end of the school year so none of this is going to make sense to him at first. And unfortunately we can't wave a magic wand & make him eager to go some place unfamiliar. The truth is the day he visited the other school he already voiced concern about no one there knowing him. So after I said every single reassuring thing I could possibly think of, I realized maybe I just need to help him see the bigger picture. That even though the actual building he learns in is going to change, his community is not.

For every faculty member who loved & nurtured our son as if he was their own, & for every fellow parent who never hesitated to lend their ear & their unwavering support, the depth of gratitude we feel can not be explained.

The end of every calendar year & the beginning of the next, is usually a favorite time filled with so much love & laughter-- from Hanukkah, to Christmas, New Year's, & even our wedding anniversary-- it's one celebration after the next. This year (politics aside), there was an extra dark veil over everything. Even a month later during a winter weekend getaway to celebrate my Dad's 70th with family, there was still a heaviness in my heart. Because eight days, consecutive or not, of watching your healthy able-child wake up in the morning & then not being able to send them off to school... leaves you with a sickening feeling.

It is time now to work towards adding the shine back into our lives. It may take a while but any thorough repair is better in the long run than a quick fix-- just ask Hayden. He has certainly watched enough youtube videos of mechanics to understand that logic!

And any moment that I feel like the world is a room filling up with water, luckily the smile on this kid's face is the only air bubble I need. 


Tuesday, February 28, 2017

a thank you from one of your constituents

Hello and Welcome! I am so glad we had a chance to meet.
If you're visiting my blog that means you received one of these flyers when we spoke on Wednesday, March 1, 2017:

There were eleven of us from NJ this year, representing seven different families. Our group on Wednesday included parents, a grandparent, self-advocates, as well as siblings.

We left behind a folder with specific information about why we met with you. Here is a link with electronic copies of our "asks":

Included in our face-to-face communication with you, we also spoke about upcoming legislation which will help the ABLE Accounts to appropriately support the very people the ABLE Act is intended to protect.
These amendments will include:

The ABLE to Work Act
Allows ABLE account holders who work and earn to save more than the current limit of $14,000
The ABLE Financial Planning Act
Allows 529 accounts to be rolled over into ABLE accounts, when such college savings can not be used for their original purpose
The ABLE Age Adjustment Act 
Enables more individuals who become disabled later in life to take advantage of the benefits of the ABLE accounts 

Pictured above, my personal leave-behind flyer tells a little bit about my family, where we're from, as well as a brief description of fragile x and the NFXF annual Advocacy Day.

I hope you visit this page once in a while to learn about our journey with our son Hayden.

See you soon & stay tuned... the next important update is always just around the corner 


Tuesday, February 21, 2017

new chapter

No doubt members of the fragile x community will look at the title of this post & think it means one thing, when actually I'm updating about another. Just a bizarre coincidence that we are experiencing so many changes in our lives at the moment. For right now I just wanted to share that I am glad I was able to attend at least part of the meet & greet with the incoming LPS Principal this evening. I have only met him briefly, twice, but I think he seems like a good match for the middle school. I also stayed for the beginning of the BOE meeting that followed, & next up the well-deserved recipients of the Governor's Educator of the Year Awards were acknowledged. One of the recipients from the elementary school is someone that we've known since H's first year in this school district. Both recipients from the middle school are familiar to Hayden as well, & one of them actually worked directly with him for the first part of the year. Another tribute that all were looking forward to immediately followed, to honor our recently retired Principal. For anyone who couldn't be there, the Board President's speech was genuinely felt by our former Principal & I believe the room as a whole. His family was there to see him recognized & he was honored with several standing ovations. On a personal note, it's my understanding in the short amount of time that my son knew the principal, they developed quite a bond. I remember when I saw him at the PTA Craft Fair back in the fall, he told me he hardly expected to develop such a relationship with any student this late in his career. The sentiment was better than my recap is, but he essentially said that getting to know my son added much value to his day. He said that Hayden's smile could fill a room with joy & that the love inside of him is an inspiration to others. I am confident other parents of children with special needs would concur, that the mutual positive impact is just incredible when your child is truly understood. Despite the Principal's retirement being somewhat sooner than expected, I wish him happiness & the best of health as he plans ahead. My wish for the incoming Principal is a mutually comfortable relationship with the district moving forward. There are countless kids & so many faculty members who will always have a special place in our hearts, & I know Hayden has a special place in theirs. They all deserve nothing less than the best. --

Wednesday, January 18, 2017

thank you for listening

I could not have imagined that my goal in life would be to facilitate better understanding between my son & the rest of the world. No one would wish for that.

While there are aspects of our life which will always be our business, I generally encourage transparency to help build as much mutual understanding as possible.  

People with fragile x experience a heightened sensitivity to everything around them, among many other challenges. But their senses are affected because they struggle from imbalanced neurological responses to stimuli. There is a term which best describes one of the most severe challenges of fragile x, & it is called hyperarousal. Hyperarousal is the psychological & physiological response to heightened (hyper) anxiety & altered arousal. So in other words Hayden's central nervous system is actually responding to his overwhelment & inability to control what is going on. This is similar to anyone becoming so overwhelmed that they say or do things they don't want to say or do, but in that moment they can not help it even though they know it's happening. This is multiplied many times over for a person with fragile x syndrome, because they are constantly battling their own biology just to respond to the world around them.    

Hayden is completely aware when he gets overwhelmed & he certainly does not want to feel that way, but biologically his nervous system lacks regulation. He might not even be able to follow through with the motor planning of simply walking away from a situation himself. And he gets so “stuck”, in every sense of the word, that it's also unlikely for him to appropriately communicate that he wants to be left alone. So the pressure of the situation is only going to further trigger his reaction. Because truthfully, what he really wants in these moments is for everyone’s attention to be diverted elsewhere. 

If you take all of that, & add in the basic difficulties that any person on the verge of their teenage years will start to experience, it's nothing short of a challenging recipe. But as a parent you do your best to help your kid do their best. And you're one of the lucky ones if your efforts are truly reciprocated by other people in your child's life. 

​​​​​Tonight, for the first time in longer than I can remember, my son went to bed early. I pray he sleeps well & finally gets a good night's rest. His schedule has been quite thrown with winter recess being unexpectedly flanked by even more time off school. As we work through all of this our friends & family continue to be the reasons we're still standing.

At last night's BOE meeting Dan & I had a brief opportunity to meet an incoming Principal. When I introduced him to my sister I said something about her coming all the way from NY to support us (again), & that you can't tell by looking at her but she wears a cape. I will also add the only reason one of my parents weren't standing beside us as well, is because they were entertaining the King. But I lost count of how many times they came to our rescue in the past couple months-- my mother joked at this point it would have been easier to just own property by us. 

I wouldn't wish this struggle on anyone but everyone should be so lucky to have this kind of support.

I was also encouraged to ask for an opportunity to speak to the Board. Long story short I never had a plan to do so on-the-spot last night... but they graciously accepted. So following the public session, my sister & Dan & I actually sat before them in a private meeting so I could voice our concerns. While I had no planned speech and nothing written down, & there were moments when my emotions took over, thankfully (to say the least) Dan or Jenna carried the points through. And the fact is-- excluding the minute or so that I covered my face with my scarf-- my little bit of bravery was met with a lot of heart. It was already late yet the Board stayed to listen without any advance notice, & for that we are incredibly grateful. 

As I said I could not have imagined that my goal in life would be to facilitate better understanding between my son & the rest of the world, but it's crucial because Hayden deserves much more than two sides agreeing to disagree. And the only thing more important than helping the world to better understand Hayden, is to first make sure that he is happy.

I'm relieved Hayden isn't aware of all the advocating we need to continue to do. But I hope he does know that even when he's only able to communicate through a behavior, we hear him. We managed to get everything he needed in order to progress in the past, & one way or another we're going to get it all together again. But in the interim we are further strengthened with so much support from family, friends, & members of the community. Please know that is doing something. While working towards developing a solution, it is truly a relief to simply be heard.