Hmitzvah

Some of our friends and family got an email from us several weeks ago, which spilled the beans about what I quietly started several months ago...

The message read in part:

 "Dan & I wanted to send a note ahead of Hayden's upcoming birthday just to share a bit of happiness with you! Later this summer in a modest service with just our immediate families, Hayden will be called to the Torah to become a Bar Mitzvah. We are keeping it very small for a number of reasons.... However, we DO promise there will be video, pictures, etc to share!"

Around the same time I also proactively created our annual National Fragile X Foundation (NFXF) fundraising page. As Hayden's mitzvah project we want to show our support for the fragile x community while honoring Hayden's milestone at the same time. The number of participants is also especially meaningful, separate from our fundraising goal, to support the NFXF while increasing fragile x awareness, too!

All are invited to visit the 2018 link at give.fragilex.org/Hmitzvah 
Sharing is equally important but for anyone who wishes to contribute, we suggest $13 for his birthday or $18 which symbolizes chai in Hebrew, and good luck (pronounced like challah, not like chai tea).

We say many thank yous throughout each year but we don't want the frequency to lessen the sentiment. Because the reality is that fragile x may not be a thing of the past any time too soon, but neither will our determination. So this has truly been our privilege year after year and we continue to feel honored for all of the support. Everyone has, in some way, contributed to our son's smile...

... certainly not excluding the Foundation. The NFXF is synonymous with awareness, education, advocacy and research. We all need support and sometimes day-to-day guidance, but we also need to think ahead. The NFXF demonstrates emphasis in all areas, and I like to think of every one of these as another reason why I became a volunteer.

We are grateful and we are fortunate because there are many incredible organizations supporting the fragile x community, around the globe. Among the most well known is the NFXF-- unparalleled in their comprehensive philosophy of supporting families in-the-now as well as moving forward. The knowledge we've gained and the connections we've made provide a constant sense of pride, sometimes relief and always hope. Similar to watching Hayden grow up.

So for the bar mitzvah process, this began with a thorough conversation with the rabbi over the phone and then a meeting with me and my father. The first introduction with Hayden was after school one day. I told him we were going to Grandma Suzi & Pop Z's house (in Totowa) and then meeting dad so we could all go see the rabbi together. 

Side note (with a smile)... Hayden is verbal-- he began speaking after he turned five. His communication is constantly progressing and most people can understand most of what he is saying, especially in the context. However something new we recently learned, is that his pronunciation of rabbi sounds much more like "rib eye". So when he was recapping the plan to Dan, I got a good laugh when my husband questioned why we would be going all the way to Totowa for steak-- which first of all I don't even eat and unlikely H would either-- furthermore on a random school night which would not make sense. So I guess technically step one was practicing "raaa-bye". 

Step two, Hayden began practicing wearing a yarmulke. (If anyone is so inclined, click on the highlighted word yarmulke and a link will open in a separate tab, where you can read the explanation of this Jewish headcovering. Same thing for other highlighted words ahead...)

Hayden has been to two family bar mitzvahs so he does have some point of reference, but we have to start simple with him because he also never went to Hebrew school.

Step three... visuals. Hayden made some interesting expressions looking at my-- and Jenna's-- b'not mitzvah album that my parents purposely put out that day after school.

Step three... meeting the rabbi and having a mini first lesson. He was wonderful with Hayden and has an easy going sense of humor. Here is a photo after the opening of the ark when he was showing Hayden the torah(s). 
And yes my son had to match Pop Z for the occasion (as he does for most occasions that aren't even occasions).  

Step four, Hayden's next lesson with the rabbi. Incredibly proud that he tried on the tefillin! My dad has his own set from childhood, and for Hayden we are borrowing kosher tefillin that my cousin's older son wore when he was bar mitzvahed. The tallis he'll be wearing on the day of will be one of the tallit that my dad has-- either his from when he was bar mitzvahed or my late grandfather's (who Hayden is named for). In the photo below he is wearing a tallis from the shul.

Sidebar about my late grandfather... he was one of the founders of the synagogue that our family belonged to while I was growing up (and needless to say the same one that my father's family went to). While it would have been very symbolic for Hayden to become a bar mitzvah in the same exact shul where other generations of Zamelskys were bar mitzvahed (myself included), long story short we were not able to make that happen. But-- blessing in disguise-- stepping up to the bimah in that particular layout and with such a congregation of that size, may have been overwhelming for Hayden. This is a much more intimate setting and I hope... most comfortable for him.

At the end of  the lesson they removed the smallest (and least heavy) of the torahs from the ark so he could practice holding it. Hayden hesitated which makes sense but they'll try again next time. Overall he did really well! Exceptionally well. 

My simple hope is when the official day comes on that Sunday in August-- (instead of having steaks at my parent's house--) Hayden will be at ease and follow through.
Fingers crossed with an x. 
In the interim, stay tuned...

--  

give.fragilex.org/Hmitzvah 

Special thank you to the moms who answered so many questions for me-- texts, emails, sometimes lengthy phone conversations, etc. Would not have been able to accomplish this with you.
And to Kira, I am particularly grateful.

share the love

I do not know where this special needs quote came from or when it started circulating around our digital universe, but you probably recognize it: (tap to view) 

It always begins with stating that kids (or children) with special needs are not weird or odd. That they only want what everyone else wants: to be accepted! In most variations, the quote includes a request: "Is anyone willing to post or share this in honor of all children who were made in a unique way?" Most illustrations say, "Let's see who has a strong heart!"

I have seen many variations for many years & I think that's because people think it's sweet. Or they simply see someone else share, & maybe they know someone with a child with special needs (or maybe not)... but either way they don't want to be the one who doesn't share the love... right?

The problem is this is no different than me posting a picture of my handsome son & captioning it, "He is not weird or odd! Please share!" Do you see how that would be counterproductive if I was trying to raise awareness of fragile x?

World Down Syndrome Day is coming up on March 21st-- the date is purposely the 21st day of the 3rd month to symbolize the triplication (trisomy) of the 21st chromosome, because that is what causes Down syndrome. On the heels of this, is World Autism Awareness Day on April 2nd. As a matter of fact National Autism Awareness Month is throughout April. So, call me psychic, but I bet this pity party of a quote is going to be circulating a fair amount again.

People with special needs are people first. If you want to feel sorry for someone, feel sorry for the people who are too close-minded to recognize differences as opportunities. Or feel sorry for people who use the word retarded as if it's a regular adjective. Smart people with kind hearts do not make a conscious decision to accept anyone different from them into their life because they don't have to, it is just a given. So if you are willing to copy & paste this then I hope you realize how absurd it is to use the word "willing". If you feel like copying & pasting this just because you like it then that's totally cool with me & thank you for that. This is an example of sharing the love & not the stigma.

You can add a heart, or a cute character, or whatever. But for the love of anyone who really is different than you, do not feel sorry for them. The challenges that people live with every day due to having a disorder or disability are usually secondary. The primary "problem" most of the time is the way other people react to them.

We should all be so lucky to have such pure minds & kind hearts as individuals with special needs do.  If you want to quote something then quote that.  What I have learned being Hayden's mom is that his ability to love unconditionally is effortless. It's an earned privilege to be a part of his world but if you're in it, you are nothing short of blessed.

--

In Like a Lion

In between power outages & snow storms, we made it to DC & back again just in time.

I think most people see there's something we do in DC when we all dress up in business attire, meet on the steps of the Capitol Building, take pictures, & then usually take some more pictures with people who look very important. And everyone who goes has something to do with fragile x... or something like that... but I don't believe most people completely understand what the deal is.

This is called the National Fragile X Foundation Advocacy Day! While the social media posts (somewhat) show the importance of what we do, certainly the pictures & the captions hardly tell the whole story. Advocacy Day is an annual two-day event that anyone can register for & attend. Anyone. The first day is a training day when we review the "asks" for that particular year, & then constituents from each state have mini practice sessions. We rehearse how we will present at our individual state & district meetings on Captiol Hill. The NFXF works with a consulting agency which sets everything up for us-- all meetings are prearranged. Day two is Advocacy Day when we are on Capitol Hill. 

Typically when we visit the offices of our Senators or Congressmen we usually meet with their staff-- such as correspondents, directors, counsel members, or other legislative assistants. There are times when advocates get lucky & do meet with the actual Member of Congress or Senator (albeit less likely). But it's important to know that either way the staff are the people who the lawmakers can count on, to help filter where they often focus their attention. Most of all simply showing up is already making a tremendous impact.

For us, here is the face of the one who sparked our motivation on this journey.
We want our lawmakers to know why. We begin our meetings with a brief overview of who we are & why we're there. Some of us create a leave-behind sheet as well with a little more information about us & about the Foundation. 

So what exactly do we want our government officials to know? And how do we say it? These are our "asks".

Our 2018 "Asks"
Beneath the surface this is not just about the community of people affected by fragile x. In the broader perspective the benefits of every "Ask" are truly widespread. 

Here is what we discussed with our members of Congress & their staff for NFXF AD 2018:

1. A request to sign the Dear Colleague letter to the Appropriations Committee to support Fragile X Research at the NIH & CDC-- National Institutes of Health & Centers for Disease Control. (By the way, a "Dear Colleague" letter is a communication that is distributed to encourage cosponsoring, supporting, or in some cases opposing a bill.) Our Dear Colleague Letter also includes language to support newborn screening programs & future funding to help maintain research & clinical trials.

2. Advocacy Day is also about continuing appropriate education. This year we are asking for Cosponsors of the RISE Act so that existing IEPs (Individualized Education Plans) can be used past the age of 21. These "living, breathing" IEP documents grow with the student from the time they're a toddler in preschool all the way through high school & extended school years. Yet currently the whole process starts over again from scratch after they age-out of the IEP that they grew up with. Instead, the RISE Act would help individuals qualify for the necessary accommodations in post-secondary learning institutions, without creating burden or increasing efforts of families or the schools.

3. In addition we want to help increase independence. Another 2018 "ask" is to support the SELF DRIVE Act or AV START Act to establish the potential to use self-driving cars for individuals who are not able to drive.  These bills would allow the Department of Transportation to study the feasibility of self-driving cars without licensed drivers. When deemed safe by the federal government use of these vehicles would be authorized throughout the United States. Not only has the technology already been conceptualized, but the House passed the bill to authorize the government research & promulgate regulations. This would be unprecedented in establishing & increasing self-sufficiency for countless individuals with varying disabilities, of course including those in areas with inadequate public transportation.

4. Currently there is no cure for fragile x. Furthermore, like so many rare diseases & disorders there are no drugs specifically indicated for the treatment of fragile x syndrome. Another 2018 "ask" is for co-sponsorship the OPEN Act. This would greatly increase efficiency towards appropriate drug treatments. OPEN stands for Orphan Product Extensions Now. This legislation to accelerate cures & treatments provides a six month market exclusivity extension, for a drug being re-purposed for a rare disease (or disorder) treatment. The sponsor company would demonstrate that the re-purposed therapy is designed to treat a rare disease, & thus obtain an approved rare disease indication from the FDA on the drug label. Not only is re-purposing drugs more efficient because it is much quicker & significantly less costly, this process would also present far fewer risks than traditional drug development.
There are approximately 7,000 rare diseases & 95% of them still have no FDA-approved treatment. This would greatly reduce the patients using untested & potentially ineffective drugs off-label. In addition this legislation could double the number of treatments for rare disease patients. Many of these drugs would be priced at major market prices, consequently reducing the average cost.

5. When discussing the OPEN Act, we also use this opportunity to reinforce the crucial importance of Medicaid, SSI, & Health Insurance-- especially as they relate to coverage for preexisting conditions. 
We encourage members of the House to join the Congressional Fragile X Caucus. This is the most effective way for our representatives to stay informed on all of these issues. Our families struggle to raise our children amidst tremendous expenses... we know the struggle will only be passed on to them if they are not able to work at a level to provide for themselves into adulthood... & we NEED the help of our legislators to be a voice for the intellectual disability community. 

Here we are on the morning of  Advocacy Day assembled behind Congressman Gregg Harper from Mississippi (taking a selfie).
Rep. Harper has a personal connection to our cause through his (now adult) son Livingston who has fragile x. The entire community is forever grateful for his years of support as our champion on Capitol Hill. Upon his retirement from office we acknowledge the breadth of privileges he has afforded us... from demonstrating how fragile x reaches across the aisle in a bipartisan Fragile X Caucus... to leading us through every exclusive, personal tour within the Capitol Building... to the unique opportunity to sit in the actual seats of the House Chamber (which are bulletproof by the way & have gas masks underneath them-- just a bit of trivia for you)... to his candid storytelling of countless historical details... even including an explanation of where the expression "across the aisle" came from in the first place. 

Following Rep. Harper's retirement, moving forward the beginning of each Advocacy Day may feel different. But the strength & impact of our efforts will remain unparalleled.

The years have not been consecutive, but to the best of our memory this was my sixth time attending Advocacy Day & Dan's third. In addition we have had family representation during NFXF AD for at least seven of the twelve years since Hayden was diagnosed. With the exception of the first two times that I participated, every year thereafter I have attended AD not only as a parent but also as a co-leader of the NJ Chapter. 

On Tuesday, March 6th our day began around 7AM on the steps of the Capitol Building. Throughout the day we had meetings with the offices of Senator Robert Menendez, Senator Cory Booker, Congressman Rodney Frelinghuysen, & Congressman Josh Gottheimer. This year the NJ Chapter was missing a couple of regulars, but even so there were still nine of us representing NJ state alone.
Participating in Advocacy Day as a whole, we were among 142 total advocates from 27 different states. 

Mother Nature is a force to be reckoned with but so are we. 

--

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.

--

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. 

---

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...

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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... 
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