Clouds, May 2010

Clouds, May 2010

Monday, October 2, 2017

attention to detail

Back to School Night at Hayden's new school was last week. Of course I'm still calling it his new school even though he has been a student there for the greater part of 2017-- he just hasn't been there a full school year yet. So for me and Dan this was our first BTS night since Hayden joined.

This is a much smaller school so whereas I'm used to a gymnasium with rows of folding chairs down the entire length of the room, this was probably twenty rows at most-- theater style, with an aisle down the center. As parents arrived, enjoyed a light bite, refreshments, and found seats, one of Hayden's therapists came over to us to tell us how well he did at the recent school trip. They went to a farm for a hayride, and apple and pumpkin picking. He brought home a pumpkin and three apples! But she wanted to tell us that he climbed a big stack of hay bales with her and she was very impressed how he successfully navigated up and back down. Her eyes seemed to light up with pride and adoration for him-- it melts my heart when we see a similar expression from his teacher or any other faculty member. One of the things I always said about the incredible support Hayden had in elementary school, was how lucky and grateful we were that the people working alongside him saw the same potential in him that we do.

After a little mingling there was a slideshow on the big screen with pictures of the students enjoying various activities, followed by a short PTA and budget presentation. Then we were dismissed to go to the classrooms.

We are the only new parents in Hayden's class so after his teacher spoke to all of us-- albeit a small group-- she spent some time speaking with just me and Dan. As we walked around the room taking in all of the projects they're either currently working on or recently completed, I took a few pictures to show the grandparents and then we paused at the doorway as we finished our conversation. It is quite obvious how much his teacher absolutely loves working with these kids every day, and her dedication and sincerity is always evident.

But the side story that truly resonated with me was when she acknowledged one of the desks that is set back a little bit from the others. She briefly mentioned to us about this particular student who is also very sensitive to stimuli (not so different than our guy). So this little bit of extra personal space provides comfort for the child and also helps with concentration, which I can completely understand. Anyway, apparently one day recently when Hayden earned down time and he was playing with something, this other child decided to join him. She said, " know that's not something that we've seen [said student] do, and so M [his aide] and I were watching very carefully and ready to move in, just in case..."

(I get it.) But that in itself warmed my heart-- the other student simply approaching my often loud kid, also not deterred by his sometimes unpredictable movements. Yet then Hayden's teacher went on to say it was more than that-- because the two of them remained side by side playing, for a block of time. Imagine that-- another child who doesn't even feel comfortable having a desk next to their classmates. And then this happened.

It was just really nice to hear. And even nicer that they notice the significance in these moments.


Monday, September 18, 2017


So I went to my first PTA meeting at H's new school. But before you yawn & close out of this, give me a minute...

As most people know by now he transferred out of district about two thirds of the way into the school year, last year. On my list of reservations was (& still is) the separation from his home community. There are really incredible families in our school district, & one of the many details that can make our lives so much better are people who know H & know us... & we just don't have to explain anything. And there are so many members of our community who truly adore him. Obviously this is invaluable.

On the other hand, sometimes our world doesn't have as much in common with others in the same local school-home-community network, even though they are our friends & neighbors. It's just a fact when you have a kid who will never quite catch-up to his same-grade peers. Over the years I've gone to countless meetings, volunteered at dozens of events, participated in anything that I could get Hayden to go to, & sat alongside fellow parents who I not only genuinely like but admire for what they do for our community. But there's always a piece missing from the puzzle of commonality.

Interestingly, primarily due to geography, a similar thing happens when I am with others within the fragile x network. Yes we are one big family in the sense that we all share a unique connection, & again, one of the many details that makes our lives so much better are the people who we just don't have to explain any context to. Being able to say everything & ask anything, obviously this too is invaluable. 
However because we do live throughout so many states & even countries, some level of disconnect is inevitable. Similar looking puzzle but the pieces are different.

In our home district I have volunteered & been involved in one way or another for every year since H became a student. 
But tonight I went to my first PTA meeting at H's new school. It was the first time I have ever sat around a table with other parents whose side-dialogue sounded like me talking. A mark on their arm from their child, a story about a broken door at home, a challenging dentist appointment, having to make an abrupt exit from any number of settings... the list could go on. The amount of detail that others don't see because everything seems fine & your child looks fine... but you know better because you have a damn doctorate in recognizing your child's subtle signals. 

My son is in sixth grade & I never quite knew what it felt like to be among other parents who have so many of the same puzzle pieces both at home & in school. Not one or the other.

The decision to basically turn Hayden's world completely upside down was not only difficult, but extremely abrupt. Figuring out what to do next reminded me of the fear I felt when he was diagnosed in the first place, almost eleven years ago.

I can't begin to describe that fear any better than I could possibly explain the relief of finally knowing that we made the best decision. What I can say is that it's absolutely nothing to yawn about because it feels just right. 


Wednesday, September 6, 2017

sixth on the sixth

Before we even pulled out of the school parking lot this afternoon, he was boasting about his day... I can't remember his exact words, whether he said he liked his day or he had fun or both... but he definitely emphasized, "I really did!"

With a semi-stuffed mouth, as my sixth grader tore through the after-school food I had waiting for him in the car, he continued to tell me all about it. First he told me he did AM Anchor (morning news) and that he shared about our trip to Maine. Lucky for me our parrot told his aide (or possibly the entire class) about my ankle, which I twisted in a sand hole on the beach path our second day there.

But on he went in his usual sort of stream of consciousness, and mentioned one of the girls who was back (I can only assume she wasn't there for summer program). He also said another girl's name and then one of the boys, and I asked about another girl in his class whose name I know. He told me so-and-so looked pretty because "she had like a bow in her hair"
(ooohmygosh if only there were emojis and hashtags on blogger....) 

When we got to the next red traffic light I turned around for a second and noticed he was wearing a smiley face ring. I said, "Oh, that's cute-- where did that come from?" And he happily said it was another boy's birthday. I said that was a cool thing to celebrate on the first day of school, and he laughed and said, "Yeah, we sang to him-- the whole class! And I had a cupcake! And we ate pizza..." I think he said they had pizza... my brain was stuck on my child with sensory processing disorder talking about a cupcake.

Either way it's pretty incredible when your son not only offers details of his day, but does so without prompting and even more incredibly... with plenty of enthusiasm. No doubt rare for any twelve year old, let alone one with still-developing expressive language. Incredible is actually an understatement.

It was raining sheets this morning and we lost power. Yet neither dampered Hayden's contentment. As we were on our way for the first day of school I took a photo of him in the backseat right before we left. After everything he went through it is clear his spirit persevered. And I will also say after everything Dan and I faced, I am proud of US. With dignity, courage and persistence we accomplished what we had to. 
Our somber summer concluded with a magical, healing trip to Maine and now, I pray, the school year is truly beginning with a renewed sense of hope.
The three photos on the right were actually taken after we arrived at school. If that doesn't speak volumes...


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. 



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.