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, "...you 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

goldilocks

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. --