seize the future

I've been saying Hayden is getting very good at showing fragile x just how strong he is, but also in our reality fragile x doesn't go away. I promised myself when I started sharing our journey that I would include some of the good, the bad, and even the scary.

This past Sunday was one week from a most incredible day. We are also approximately one week from when Hayden's annual Giving page closes. As most know, this year our support for the NFXF is in honor of H becoming a Bar Mitzvah. While we have already met and even far surpassed our original goal, the page has no limit. I am certainly in the mindset of continuing to see just how far we can go!

But we do not just choose to support the National Fragile X Foundation because of the fact that Hayden was born with fragile x syndrome. There is an important perspective I have been wanting to share ever since the NFXF International FX Conference in July, and it has to do with helping individuals with fragile x throughout their lifespan.

At some point after lunch yesterday everything turned into a very fragile x sort of day-- didn't start out that way at all. I would loosely sum it up as mom-- and then later the respite helper-- receiving the brunt of the noncompliance, defiance, and overall state of hyperarousal. This is a real term used to describe when the central nervous system of an individual with fxs is in a temporary, heightened state of altered arousal. While Hayden is aware when this happens, he is struggling terribly to regulate himself. He is remorseful after-- from the hitting, cursing, throwing things-- and actually quite disappointed in himself. Thus turning an already difficult situation into something completely heartbreaking. How awful to witness your child going through that and also knowing, inevitably, there are other people in the world who will witness this too. It is one of the absolute worst feelings-- when you're at your lowest and it's essentially on display. And worse, leaves a window of vulnerability when others can completely misinterpret and misunderstand the context or the intent.

For example Hayden feeling overwhelmed... wanting it to stop... someone wanting to help... Hayden not wanting the attention... his biology putting him into a state of fight or flight... having an impulsive reaction and grabbing an everyday object that happens to be on the counter because someone was using it... say for example that object is a regular knife like one you would find in any typical kitchen... and say for example he clumsily raises it, not pointing it at anyone or anything in particular, but in his state of fragile x hyperarousal he sprouts awful expletives (among other things that he doesn't mean)... followed by the nearest individual calmly backing off and firmly stating to put the object down. Hayden listens, is immediately apologetic, but also just scared the heck out of someone. Not to mention this eats him up inside and ruins the rest of the day for him. As a parent you thank the Lord the other individual has the knowledge to understand he never has intent to injure, while silently this unprecedented incident makes you feel like a piece of your heart just died inside.

Something like that.

So back to the perspective from conference that I want to share... and why continuing to support the mission of the NFXF is so crucial...

There are of course many parents in the fragile x community whose children are now grown adults. During a meeting before conference kickoff, one of these parents was reflecting on just how far the community has come. Especially with regard to conferences and having been there from the beginning, this particular parent was able to offer a perspective that not all of us were aware of. The room grew quiet for a few minutes as we listened to what it was really like so many decades ago... the optimism and hope surrounding the discovery of the single gene being responsible for fragile x. And with that, the families who were sure there would be development of a pill (for example) within five years from then... and fragile x would be no more. Ten years at most. One gene. I mean if the scientific community was able to identify this, surely the medical community could develop a treatment or probably even a cure. So they thought. And with that there were some who remained determined and focused and completely dedicated to generating enough resources for research. And helping to allow scientists to continue efforts towards appropriate treatments or perhaps even that cure.

In addition, there were those who paused to realize something else. We still need to think about living in the now. How will families get through the day-to-day. How can we ensure that everyone has access to information-- the individuals, the caregivers, and anyone else involved in the life of a person who is affected by fragile x. The community needs education, awareness, advocacy... and yes, research too. Seize the day as well as the future-- always think forward without forgetting about today.

So if I don't share the good, the bad, and the scary in the now... then what happens when I'm not here to share it. I want as much of our perspective to come from us before it can come from someone else. We will always need experts and resources-- such as those available within the NFXF-- because some of the needs of individuals will continue to change throughout their lifespan. The good news is we will always be able to continue to learn.

Amaaazing what our loved ones can accomplish when we know how to help them succeed.  A week and a half ago was just one example of that. So is it better that we have a cure for fragile x? Yes.
But it is best that we know what to do until then.

For approximately thirty five years now the National Fragile X Foundation has been like a lighthouse for the community of people affected by fragile x, around the world. We are grateful they continue to help Hayden forward.

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give.fragilex.org/Hmitzvah 

Bar Mitzvah

The very best part of this journey is that Hayden (quite appropriately) is so proud of himself. I can barely articulate how meaningful that is for us. 

On the morning of Sunday, August 12th in a beautifully modest service with a minimum number of family and congregation members present, Herschel Zemel was called to the torah as a Bar Mitzvah. 

When we had the opportunity to say a few words I didn't want to overwhelm Hayden or make him feel uncomfortable, as being put on the spot. So I will say it here instead. Sunday was all about him but it was also one of the best days of my life. While we are beyond blessed that over the years many people have made some pretty amazing things happen for Hayden, this wasn't someone else's doing. He had to commit to weekly lessons with the Rabbi-- albeit extremely modified-- but he still followed through. No one gave him an honor out of the kindness of their heart. This was earned.

Our guy who was gorgeous from the start, and had an alertness in his eyes that couldn't be ignored... who grew into toddlerhood with blond curls, a gigantic smile, and most contagious belly-laugh... had no idea he had fragile x syndrome. We of course found out when Hayden was seventeen months (almost to the day), but at the time it was nothing more than a diagnosis. More accurately, a name for why he was first sitting up when most babies crawl... and it was the name for why he only started crawling when most babies are confident walkers... and it was also the name for why he didn't become a confident walker until the age that most toddlers are already beginning toileting.

But what the doctors and specialists labeled as global developmental delay due to a genetic disorder, we learned to label as Hayden doing everything when he is ready, and not before.  The verbal communication is what we longed for the most. We felt that he would eventually speak because he was quite engaging from the start-- he laughed when it was appropriate, cried when it was appropriate, and overall seemed just as in-tune to the world around him as he was to anyone right in front of him. Still his first few birthdays came and went and he did not yet have speech. He had Early Intervention (EI), plus private therapies, and then aged out of EI and started preschool. Still a couple more birthdays passed and very little speech-- barely a handful of words.

And then the summer he turned five, within a couple months after his birthday, new words almost suddenly emerged. When he returned to school in September his teacher called it a language explosion. You see... everything when he is ready and not before. This is also what I told myself upon thinking about him becoming a Bar Mitzvah... but in my heart I did hope it could happen during the Jewish calendar year of his thirteenth birthday.

About a week after Hayden's birthday when I first blogged about the big news, I said my simple hope is that when the official day comes Hayden will at least be at ease enough to follow through. What I can tell you now is that after the service on Sunday both the Rabbi and his brother (also a Rabbi) noted Hayden did so well, that it could not have gone any better. And the fact that Hayden actually repeated part of the blessings as the Rabbi recited them... well... that is right up there with the summer when he turned five.

Following the service we enjoyed a small kiddish at the shul and then went to a nearby restaurant to continue the celebration with Hayden's grandparents, aunts, uncles and cousins.

Professional photos and video will be forthcoming.
In the interim, I invite you to enjoy this very brief but amazingly incredible playlist of some highlights that I captured.
Bar Mitzvah 8.12.2018

Last but certainly not least Hayden's annual support page for the NFXF-- which this year is also his Bar Mitzvah project-- will remain open for a couple more weeks. 

give.fragilex.org/Hmitzvah

To say we are honored by everyone's generosity is a significant understatement, as the current amount has already exceeded our original goal by more than triple! This is only further testament to how much everyone believes in and supports Hayden, and truly our gratitude is immeasurable.

Extra special thank you to Grandma Suzi and Pop Z for the beautiful kiddish and to both the Rabbi and my parents, for the heartwarming surprise of Hayden's very own tefillin and embroidered bag.
And the brand new siddur (prayer book) inscribed with dedication to Hayden, from the Rabbi and the Chabad.

I know I already said last but not least but I guess I lied, because I actually want to add an open thank you to the Rabbi. Dan and I could not possibly be more grateful for his patience and understanding with Hayden. I always say there may be a lot of good people in this world, and a lot of really good teachers, but it doesn't mean they're great with Hayden. We are blessed to know him and feel simply impressed how well they worked together, especially within a relatively short amount of time.

Our hearts are full and we look forward to Hayden's next blessing, in whatever capacity that may be. But we know there will be more, when he's ready and not before. 

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july blessings

I've been blog-neglectful during July... I hope this abbreviated recap will do justice because it was absolutely an important month.

For starters, the NFXF held their 16th International FX Conference! This one was in Cincinnati as it was hosted by the NFXF Tri-State Chapter of Indiana, Kentucky and Ohio. They had an awesome superhero theme! This is me and Paula with Superman: 

She is a dear friend and has been both a blessing and a mentor to me. While we will greatly miss her leadership here in NJ as she has just recently moved one state over, we are all very lucky (& relieved) that she is continuing her other roles within the NFXF-- not only as Northeast Regional Leader, but also as an NFXF Board Member. As I said at our June MNO she is just moving over, not moving on. Thank goodness! 

At the last night of conference, during the Saturday Banquet Dinner and Auction, the fx community also had the pleasure of honoring Sarah "Mouse" Scharfenaker, MA, CCC-SLP who is one of the co-Founders of Developmental FX in Colorado. For many decades, also alongside Tracy Murnan Stackhouse, MA, OTR/L, she has helped countless families within the worldwide fx community. In simple terms they are speech and occupational therapists, respectively. But in more accurate terms they are fragile x experts who have presented at more conferences than probably anyone could guesstimate. So ahead of Mouse's upcoming retirement this was an unforgettable moment for the fragile x community to bestow even a fraction of our gratitude for her commitment and contribution. As an added surprise which only a few of us knew ahead of time, the also-famous Mrs. Rogers from Colorado flew in just for the Saturday event! Cindi is a dear friend to many of us and although she won't like me saying so, she is like a young matriarch to the fragile x community. It was such a special treat to see her, albeit entirely too short! If you ever want to follow along on her family's journey you can visit them here.

I also had a chance to visit our poster that I get to see once every two years. It's always cool having my family with me while I'm at conference. Surreal how big Hayden is now, and that Dan would never be able to hold him like that anymore! Our Fragile X World is a research community and online registry of families affected by fragile x. Years ago when they were first launching (I think) they had reached out to the fx community for photo submissions and long story short we got lucky. 

On another personal side note, a NJ family in our fx community suffered quite a scare almost immediately following conference. I believe it was the day after they returned home when my friend Kristin had an accident (not motor vehicle related). She was in the ICU for a number of weeks. She slowly but steadily regained strength and finally just today was transferred to a rehab facility. She is a loving wife and mom of two incredible teenagers, including one with fragile x. I know I speak on behalf of the entire fx community when I say we all continue to pray for her and root her on! She is persevering like a warrior and is truly one of the most kindhearted people I know. This photograph was taken just a few Saturdays ago while we were at the Conference. I am in disbelief how much has happened since then but I know she is going to continue to pull through like a champ! 

In more fragile x news, Hayden, Dan and I also had our annual FX Awareness Walk on July 22nd! It was raining up until minutes before our walk started-- still-- we were joined by two dozen people (and the group would have been even more if not for a few families who couldn't make it)! As many of you read in my facebook post that day, when Hayden was in elementary school we had our first walk with just six people-- the three of us and three friends. We wore green and walked two miles around the lake. Eventually the walk grew to maybe 10-12 people so we moved it to a nearby state park. We've always been joined by local community members who do not even have a familial connection to fragile x, but they are there to support an incredible community and an incredible kid who really gets inside your heart. This year's walk was further special because one of our favorite formerly-local families visiting from Florida was able to join us... aaand.... this year we had participation from other fragile x families as well! On the same day at the same time NJ also had an awareness walk down the shore with several more families in the fragile x community. That one is primarily attended by fx families each year and it was so wonderful to know the torch has been passed even with Paula having moved on. Thank you Navneeta for putting that together!

I just want to reiterate if the National Fragile X Foundation had never established National Fragile X Awareness Day it's unlikely these walks would have ever started. Year-round there is a lot we do that would likely have never been if not for the NFXF. 

 On that note as I write this we (as a family) are beyond honored and humbled to share that Hayden's 2018 support page has far surpassed the original goal by more than TRIPLE! What started as a modest Bar Mitzvah project has turned into something that completely exceeded our expectations.

Pretty symbolic of Hayden, too, if you think about it.

The above picture is a practice photo from two lessons ago. Even though last week's lesson with the Rabbi did not go so well, I am overall in complete awe of Hayden's progress. I am hoping for the best, and the best would be that he is just as proud of himself! He is always able to recognize and appreciate his own accomplishments and that is one of my favorite parts of being his mom.

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to be continued...