Clouds, May 2010

Clouds, May 2010

Tuesday, August 1, 2017

heaven needs heroes too

My Uncle Bruce's résumé would tell you that he held a bachelor's degree in Emergency Services Management & a master's in Safety Engineering. Before my sister & I were even born he began his career as a volunteer firefighter in New Jersey in 1972, eventually becoming a full-time firefighter paramedic in both Florida & Georgia. He would earn certifications as a firefighter, emergency medical technician & paramedic. He was also a fire instructor, EMT instructor & taught CPR. He went on to hold a position with the state of Georgia to not only teach but also develop courses in fire, rescue, & EMS. After completing an instructor course at the National Fire Academy in Maryland, he began teaching nationally part-time before moving to New York. While back in the northeast, he became the Assistant Director of Health & Safety for the New York City EMS. This also included his service as the Acting OSHA Coordinator of the Fire Department of New York. Upon retirement, he relocated back to Georgia. 

What I always knew was a simpler perspective. My dad's family was also from Livingston & Pop Z grew up within walking distance from the high school-- up behind it, past the football field. Needless to say he & his siblings are all LHS alumni so my sister & I were the second generation of Zamelskys to graduate from there. But for as long as I can remember, from my uncle having lived down south for so many years, there was barely (if any) a hint of Jersey accent left in his southern drawl. "Well hello there, darlin'... how ya'all doin'?" he would say. You could even hear the twang in his laughter.
I also knew he was a chimney sweeper for I'm assuming a rather short period of time, but yes there is photographic evidence. 

From a very young age whatever Uncle Bruce was doing you can be certain there was an interesting story attached. Like the time he was in grade school & he tried to sell yarmulkes to all the students in the cafeteria for 25 cents by telling them they should be closer to G-d when they're eating. I do remember my grandmother telling me that the stolen head caps were later returned to the synagogue so at least for that (at Temple Beth Shalom, by the way, of which my late grandfather was a founder).

I also remember my uncle having an accident with my dad's first Harley, after taking it for a ride without permission when he was visiting one time when I was a kid. (This "borrowing" of what wasn't his was somewhat of a trend when they were kids themselves. So I heard.) Anyway, he was fine but the bike wasn't as fine. But at least it was our own property damage & not someone else's... like the time he bought a big, old fishing boat. And on our first & perhaps only excursion (I'm not entirely sure), he accidentally speared another boat's windshield with the bow of his as we were leaving the marina. Yet again not a single injury because as luck would have it, the other boat was vacant. 

One thing's for sure, you would never be bored or without something to chuckle over if you were in the presence of Uncle Bruce. And more often than not you can be damned sure he would learn you somethin' whether you asked or not. 

He certainly had his own particulars but we sure love him & will miss him so. 

I hope wherever you are you have a bottomless glass of ice cold water just the way you like it, with savory hard salami from the very best kosher deli, & those little chocolate covered jordan crackers for a sweet treat. But most importantly that you enjoy whatever you're doing in peace... & heaven help anyone up there wearing perfume or cologne who comes within ten yards of you.

Please tell Gramma Phyllis & Poppy Shoore I love them, too. I don't know how this all works-- if they weren't expecting to see you so soon, or if they knew more than us. But either way, despite your time on earth being too short I do believe you will continue to live up there. And I promise we'll do the same down here. I know that's just what you'd want. 

Shalom, ya'all... 

Wednesday, July 19, 2017

aware with pride

Our local area has a new magazine that is only a few issues young, and by chance I happened to meet the publisher a couple of months ago. Long story short our guy, along with his dog and a very nice spotlight on fragile x, are featured in the latest issue! 

I was so enthusiastic about the prospect-- even though we did not desire to be on the cover-- that I feel as if I nearly overloaded their content coordinator with information for the article. So naturally I am sharing this blog post to accompany the magazine coverage for context, as well as clarification. But needless to say we hold a depth of gratitude for the inclusion in their publication!

As the article mentions I do have a role within the National Fragile X Foundation (NFXF)...
The Community Support Network (CSN) is comprised of parent volunteers from all over the United States, within seven regions. Each region has their own groups and I am the co-leader for the New Jersey Fragile X Community Support Group. Our group includes the entire state of New Jersey and is not just specific to any one area. Paula Fasciano, my mentor and counterpart, is also the Northeast Regional Leader for the CSN as well as a Board member of the NFXF. It is true I was somewhat reluctant when she initially reached out (approximately four or five years ago), but I simultaneously wanted to help very much. So I sort of jumped in with both feet and my hands together and that's how my involvement began.

As per the article Hayden was diagnosed at 17 months. At that point we already initiated the process to get evaluated for Early Intervention (EI) services, but it is very unfortunate that he missed out on nearly a year and a half prior to that... simply because we did not yet know about fragile x. We knew he needed help, but we did not yet know "why". This is further frustrating when you consider the fact that children age out of EI when they turn 3. I believe initially Hayden qualified for about seven hours of therapy per week, across four different therapy areas. After our first fx clinic visit, we were armed with a much better understanding of what he would need and how to advocate for the appropriate services. Our efforts ultimately secured 19 hours of therapy per week, across five different therapy areas. Without the support of the fragile x clinic, we would not have known what the appropriate goal would be.

The Fragile X Clinical & Research Consortium (FXCRC), also mentioned in the article, is the larger umbrella that all of the fx clinics are under. There are two clinics in New York and the one on Staten Island is the original one we went to. Some of their experts have been consistent pillars of support to the entire fx community for many decades. In recent years the first fx clinic in the state of NJ was finally established as well, and they are within Atlantic Health System (AHS) in Morristown. In an effort to help make this happen, during an appointment with one of Hayden's specialists, I bridged the initial communication between the NFXF and AHS. Eventually through the perseverance of many others AHS became a part of the FXCRC. (Side note: we were thrilled when Newton Hospital became part of the same network, as Dan has actually been with AHS since before Hayden was born.)

While Hayden is receiving the support he needs at a different school now, I am definitely grateful for all of the people who loved and nurtured Hayden throughout his elementary school years. That being said I still wouldn't limit my gratitude towards them for what I do now. Hayden is definitely the primary driver of that.

We hope that you take a few minutes to read the article! We would also love to see social media pics of our friends and family wearing green on Saturday, to show support on National Fragile X Awareness Day! And yes it is true July 22nd is an officially recognized date right in our own town as well!

Our super-proud guy holding an advance copy of the magazine's latest issue!
For anyone local who finds their way to this blog post, but who does not personally know Hayden, here's a little blurb that they ran out of room for with all of the content they were squeezing into that article!
Hayden has always been an engaging child. He loves spending time with people closest to him and his interests include cars, tools, trucks, fixing things, helping others, as well as spending time on the water or being outside in general. He loves to wrestle with his dad, take his dog Sammie for walks, or work on projects with his Pop Z. He started speaking after the age of five and has barely stopped talking since. He likes to wear baseball hats and faux glasses but like I always say his most prominent feature is definitely his smile.


Thursday, June 22, 2017

brighter by the dozen

Funny how raising your own child doesn't prepare you for when they grow into a person the size of a small adult. It's that stage when they're still a kid, but they stand nearly eye-to-eye with you. It's not as if it happens overnight, despite the expression, yet I look at these pictures & I can hardly wrap my mind around how we got from there to here. 

And how surreal that we did not yet know about a condition called fragile x when the first photo was taken, & we wouldn't even hear those words until five months later. But throughout these years I have never stopped learning from Hayden. To this day most of what I need to know about a person I can tell from how they respond to him, how they interact or react. Hayden also has the ability to show people their own true colors-- I had no idea how little I knew about my own personal strengths & weaknesses until I became his mom.
I can't imagine any other child opening our eyes as much as Hayden has.
To the person with the purest heart I've ever known, the braver of the two of us (who I can always count on to save me from spiders), the one who will never be too grown up for cuddling, the one who I've always looked up to & pretty soon I'll be doing so literally... our birthday wish for you is that as the year goes on it only continues to get better & brighter.
We love you beyond measure.
12 months / 12 years

Happy Birthday H-man!

Tuesday, June 13, 2017

anonymous thank you

I was walking through the second to last aisle of the grocery store when I heard a woman say, "Heeey..." I turned around and it was someone who knew H from back in elementary school. We hugged and she looked at me with a crinkle between her eyes and asked, "How is he doing?" I get that a lot because people are just as surprised as we were that this school year is coming to a close so very different than how it started. All I can say is we ended up standing there talking for so long that I hope the steaks in her cart did not have to be thrown out. She told me how much she misses Hayden and that his picture is still on her refrigerator. (I get that a lot, too, because there was always someone to thank for something & photo cards were often my first choice.) But anyway, she told me that with all the behind-the-scene stuff going on at the school, or this, that, and the other thing... at the end of the day seeing Hayden's smile would always give one back to her. I looked at her and I said please know it is people like you who always helped me sleep at night. Because that's aaaall Hayden. It's not because I'm an involved parent, or because I advocate, and volunteer, and give fragile x talks... Hayden draws people in completely on his own.
So when we have a fragile x sort of morning such as the one we had yesterday, when it took Hayden about thirty minutes to get in the car to leave for school, and about another twenty to get out of the car and into school, and therefore his day was a good hour off schedule... or when there's an afternoon like today when I hop on the highway to drive to pick him up and there's construction, and then an accident, and then another accident in between the construction and the first accident, and I finally get to the school so late that his aide had to leave so he was hanging out with his teacher... Let me tell you, moments like the one I had when I ran into that former staff member are what help keep me standing. Because there are plenty of other days when I am upset and tired and frustrated and emotionally drained. And then someone like that (like you) stops me in the grocery store with the most endearing eyes and kind sentiments about my son... those are the moments that reinforce for me that everything will be okay. These are the people who see Hayden-- who have always seen Hayden-- for who he is and not for his fragile x. At this time last year I can tell you we never, ever could have imagined we'd be where we are now. So to each and every one of you who have helped us through this most trying time (you know who you are), thank you for reminding me what makes our community our home. --

Monday, May 22, 2017

changing the lyrics

This picture was taken just before 11AM on Friday. Hayden was dressed for school, he was not sick, & he was not supposed to be home. But there he was hand-to-paw with Sammie in the aftermath of another one of life's unexpected moments... when that powerful fragile x gene had a temporary takeover of his mind & his body. I didn't see this one coming. 

Before he switched schools one of the many factors I was so heartbroken over was how many moments he missed with the peers he had been growing up alongside. He missed the class picture at the beginning of this school year because apparently they couldn't get him to join the other students. That was a first & I was sad for him but I of course didn't let him know. When his individual school pictures came back I simply hid the class photo so he wouldn't be reminded. I think I mentioned that in an earlier post but also around that time we missed the PTA Mother-Son Luau, & at some point a Father-Son event, & unfortunately the winter concert too. This weighed heavily on my heart because during elementary school it took us years to help him be comfortable enough to stand on the risers with his classmates. And when he did he was so happy & having so much fun. To this day he still enjoys watching some of the short video clips I captured over the years.

There are other examples but basically Hayden just didn't seem comfortable in his own skin after he started middle school. I know a lot of other kids were having difficulty adjusting as well, but we also know that most of what Hayden feels will often be even more heightened. I remember talking to some of the other moms in the fragile x community, & trying to understand if what we were experiencing with Hayden was typical of these kids when they reach a certain age. Although, during the weekends Hayden was for the most part his usual self. It was a very confusing & trying time for us.

Even though enrolling him in a different school is not something we ever could have expected doing one day, from the get-go it has seemed like the right fit. Every administrator, faculty, & staff member we've met are fantastic. They've never spoken to us as if they were trying to sell us on anything. Every conversation has carried a "how can we help you & help Hayden" sort of tone & they are grateful-- not like it's their "job". They have never sounded like politicians, they have never spoken to us in any way that felt scripted, & at the same time they never have to hesitate before answering any of our questions. They specialize in working with special kids & what can I say... it shows. Everyone in that school building seems genuinely inviting & happy to be there. The aura is comfortable & it is contagious.

Fast-forward to last Friday & I was so excited for Hayden for his next class trip. Even in the short time Hayden has been a student there, he has already done so much! And there is still a lot more planned. It has been wonderful (& such a relief) to once again see him participate in various field trips & school events. I knew he would enjoy Friday's trip, too-- they were going to a farm & my biggest worry was remembering bug spray because he seems to get bit by everything this time of year.

Friday morning came & he woke up happy & our day started similar to how it always does. He left the house in a new outfit, his backpack all set for the day trip, & a smile on his face! We were literally about to pull out of the driveway but it sounded like Hayden's door didn't close all the way. So I asked him to open it & close it again & he started to... he opened it... & then that was it. I lost him (as we say).

After a very long half hour of trying every trick in the book-- including calling the school & having his bubbly-personality teacher get on the phone-- he still would not get all the way back in the car & close the door & put his seat belt on. It eventually got late enough that we would never even make it in time for him to leave with his class. We simply live too far away from the school.

It was a sickening feeling to shut the engine & remove my keys from the ignition. But there my truck sat, quiet, in the middle of the driveway several feet back from where it would normally be parked. We were defeated & fragile x won.

The weather was absolutely beautiful. The two days prior had been humid but Friday was much nicer. At the same time those clear, sunny skies only made the situation even worse. No rain, he wasn't sick, he was all ready to go... & then suddenly we were stuck.

The fact is due to simple logistics he is increasingly disconnected from the only community he has ever known. At the same time he is not fully integrated with the new one. So it's sort of this in between limbo. I do think it is the right environment for him, I know we made the best decision we could have given the circumstances... but it's not local & it's not home. So there are some things about his new placement that are not ideal. Hayden had previously been surrounded by children who he knew. And who knew him from way back in preschool & kindergarten. And every year since first grade I spoke to his classmates about fragile x. I volunteer at PTA events, I have been part of the Education Foundation, & I have given every effort (& then some) to build Hayden a very strong support system over the years in his own community. And then, spent nearly an entire school year (last year) trying to prepare him for some place where we thought he'd be for the next four.

I know I've said that before but the context is not getting much easier. The change was abrupt & it is still an adjustment.

He did enjoy the rest of our weekend & actually his new class happens to have another trip planned later this week. While I am relieved that he went off to school relatively smoothly this morning, I can only hope for the best that he doesn't miss anything more.

I was sad for Hayden on Friday & I'm guilty of not doing a very good job of hiding it that day. I hated the situation, I hated fragile x, & whether I blame it on my genes or not I too became stuck.

But I also remember Hayden starting to sort of snap-out of his state of mind before I did. And he asked me what I was doing which in many contexts is actually his way of asking "what happened". And I said, "Nothing, I'm just upset." I wasn't telling him anything he didn't already notice. So then he said something along the lines of, "I'll sing for you" or he asked "want me to sing for you"... & I was so surprised I just looked up... & within two seconds he was standing there holding an old toy guitar that we never got rid of. And he started to sing, terribly out of tune, "Mooommyyy... is so craaankyyy..." & then he started throwing in other lyrics about the dog that made no sense but sounded like it could be an Adam Sandler song.

I hope with all my heart that he-- and we-- have more of those types of moments to get stuck on instead.


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.