the opposite of worse

Facebook is where I learned that two of yesterday's victims had fragile x syndrome. Any article you read describes the two brothers in their 50's as having contagious laughter and gentle spirits. One article in particular, published by USA Today mentions fragile x specifically.

Yesterday was the day when a gunman not much older than myself burst into a synagogue and opened fire, while yelling his intentions to kill Jews.

I visited the website for the Tree of Life Congregation in Pittsburgh. Their home page, unchanged I might add-- as it was before the murders-- says in part:

"We offer a warm and welcoming environment where even the oldest Jewish traditions become relevant to the way our members live today. From engaging services, social events, family-friendly activities and learning opportunities to support in times of illness or sorrow, we match the old with the new to deliver conservative Jewish tradition that’s accessible, warm and progressive."

In times of sorrow jumped out at me. I scroll down on the page and I see a post from a Rabbi Myers that was just published in July. He begins, "Current news recycles at a dizzying pace...". A couple sentences later I see "Parkland students"... with a lump in my throat and my eyes beginning to well up, I only scan the page because in the moment I can not stomach reading too carefully. And then a few paragraphs down... this:
"Despite continuous calls for sensible gun control and mental health care, our elected leaders in Washington knew that it would fade away in time.  Unless there is a dramatic turnaround in the mid-term elections, I fear that that the status quo will remain unchanged, and school shootings will resume.  I shouldn’t have to include in my daily morning prayers that God should watch over my wife and daughter, both teachers, and keep them safe.  Where are our leaders?"

Fast forward three months to the horror that occurred in that very synagogue. Within hours of Saturday's event, when reporters asked Donald Trump (in so many words) if it might be time to revisit gun laws Mr. Trump said, "Well again, this has little to do with it if you take a look. If they had protection inside the results would have been far better."

What a stark contrast to the Rabbi's words, also in the same July 2018 post:
"Our school students deserve better. Immigrant families deserve better. We deserve better."

I haven't exactly taken a survey of who goes to a church or synagogue where there are armed guards posted. Whether during a specific event such as (in this case) a baby naming, or just on a regular basis to protect worshipers during daily service... to my knowledge an armed guard is not the norm. I don't care if Trump was only trying to suggest that it should be the norm, because instead I am trying to put myself in the shoes of the families of the victims. Which I never can. However, I hope they can hear my prayers... and the prayers of any clear minded person in the universe... that your congregation should not under any circumstance take any responsibility for the horror that occurred. Even if the President of the United States himself suggests otherwise.

Where do we as a country draw the line at "if a victim had...[insert any number of ideas]... then the results would have been far better."

I do not know the city of Pittsburgh very well at all. I visited the University when I was going through the college process because I couldn't decide between U Pitt and Ithaca (I'm very aware of the fact that they have next to nothing in common). When I went to visit each of them I liked Pittsburgh but Ithaca was love at first sight. So I don't have any ties to the city of Pittsburgh but I don't believe anyone needs a personal connection other than being human, and recognizing this horror for what it is.

But as a parent of a young man with fragile x syndrome... and as a parent of a young man with fragile x syndrome who just became a Bar Mitzvah less than three months ago, this feels like it hits very close to home.

They were all taken before their time and therefore each of them was too young to go. None of whom could have or should have done any one thing any differently.

To loosely quote part of the Mourner's Kaddish, I wish you all abundant peace in heaven. May G-d shelter each of you with the cover of His wings forever.

In alphabetical order:
Joyce Fienberg, 75 years young
Richard Gottfried, 65 years young 
Rose Mallinger, 97 years young 
Jerry Rabinowitz, 66 years young 
Cecil Rosenthal, 59 years young
David Rosenthal, 54 years young
Bernice Simon, 84 years young
Sylvan Simon, 86 years young 
Daniel Stein, 71 years young 
Melvin Wax, 88 years young
Irving Younger, 69 years young 

Amen.

--

less than great

Monday, October 15th the ABC Network show The Good Doctor aired an episode involving a patient with fragile x syndrome. The patient was a teenage boy being raised by a single mom.

Seemingly right from the pages of fragilex.org, the Good Doctor himself accurately paraphrased the condition with four key points: it is a genetic disorder (✔) characterized by intellectual disability (✔), behavioral issues (✔) , and hyperactivity (✔).

The show's portrayal of said behavioral issues could be generally accurate-- depends on the individual. And to that point, it is not so uncommon for caregivers to not be able to provide the most ideal care. This episode did touch on the perspective of someone who is overwhelmed and who is not able to maintain the best, safest environment for herself and her son. It is simply not accurate to say that the parent is giving up. What they're doing is desperately trying to help their loved one to grow up... and to thrive. Having her child placed where he is surrounded by people who can help him is not giving up. It is facing reality. It's heartbreaking but it happens. 

However the few times that this character spoke his quick, clear communication was highly unrealistic. The way he addressed the hospital staff instead of his mom to ask if the surgery was going to hurt, in reality, would be extremely unlikely. Later in the episode, after we learn the mom has hurt her hand (it is implied during a situation with her son), and he is beside her as the doctors determine they need to bring her to the OR this time he (the son) becomes overwhelmed. The doctor tries to help and the young guy with fragile x ends up in a fight-or-flight mode and consequently punches the doctor. A short while later they're sitting at a small patio table together outside-- the fragile x patient and the doctor. He offers the doctor an apology for hurting him-- he says he is sorry. The doctor asks him if he has a coping mechanism when he gets overwhelmed. The boy with fragile x looks at the doctor, makes eye contact, and says, "Do you?"

Once again their exchange (albeit short) was not at all typical for how a person with fxs would communicate. Especially someone in an unfamiliar setting surrounded by unfamiliar people... who had to go to the hospital unexpectedly... just had his own procedure and now suddenly his mom is having one too. The entire context would have greatly affected him. The very last thing he would be doing is asking the doctor such a level-headed mature question. If not for the fact that this teenager was carrying around his favorite plush, you might argue it would hardly be obvious he is cognitively impaired.

And then after a brief denial, the mom begins a conversation with her son. They're not only still in the hospital but basically as far as he's concerned what she is about to say is completely coming out of nowhere. While the viewer can not hear the exchange we know it's about finding a different environment for him. He is intensely upset for a moment, yells at his mom to stop it, but then leans in for a hug. This tough-love moment was again, beyond inaccurate.

But the least accurate detail is what the character playing his mom said back at the beginning of the episode. She tells the doctors that her son was a beautiful baby and that he walked and talked... and then after the age of 2 it was as if he started going backwards. I have yet to hear of a case of fragile x syndrome where an individual was actually developing at a typical progression and then suddenly not.

Fragile x is something that people are born with and the delays and many other characteristics are present at birth. Of course more traits become evident as they develop but they will not begin life meeting all of the typical milestones on time, and then stop.

I suppose all in all any fragile x awareness is better than none... and the doctor's character does define it well... but that's about as good as it got.

For more information please visit The National Fragile X Foundation at fragilex.org 

--

screencap

To You,
 You know who you are...

"... after everything you've done
I can thank you for how strong I have become

'Cause you brought the flames & you put me through hell 
I had to learn how to fight for myself 
And we both know all the truth I could tell 
I'll just say this is 'I wish you farewell' 

I hope you're somewhere prayin', prayin'
I hope your soul is changin', changin' 
I hope you find your peace 
Falling on your knees, prayin'...

I am proud of who I am
No more monsters, I can breath again..." 

Kesha, who would not even be anywhere near my top ten list of favorite artists, happened to release this song in early summer of 2017. Some of the lyrics nearly brought me to tears... the timing was too close to one of the most difficult times in our life as a family.

As you know it was nothing that we brought upon ourselves... nothing that any one of us (meaning me, my spouse or my child) could have done differently... nothing that we could have seen coming. None of us-- especially my child-- deserved to have our lives turned upside down. And I may never know the root of it, because we certainly can't blame it on an innocent kid who was born with a genetic disability.

All of these excuses fly around in my mind sometimes... was it a knee-jerk reaction? I don't think so, because then it would have only happened once. Was it unpreparedness? I don't think so, because I could not have possibly handed you more-- or better-- preparation than what I (and others trying to help) had shared with you. Some people tried to offer us comfort by saying you just liked to make your position known. But having lust for authority never made me feel any better back then and it doesn't now. Others suggested plain old inexperience... ignorance... or immaturity. A former colleague of yours labeled you arrogant. As for me when I think about your decisions the word inexcusable comes to mind.

If you never made the decisions you made... if you chose to act as a helper instead of an enforcer... who would have gotten hurt? Who would have reprimanded you for doing the right thing? Would you have regretted choosing kindness over code?

If I had to guess, I would say you have zero idea of the amount of time I have invested to consider your perspective. To try and make myself feel less hopeless... to try and force my brain to find a shred of evidence that there was no other way to have a better resolution. Am I supposed to convince myself that although it was horrific, it simply had to happen the way it did? Is that what you've done?

Someone who happens to know all of us once said they believed-- that one day-- you would have your aha moment. I however feel sorry for you that you missed out on an incredible opportunity, to learn from someone with one of the purest hearts on this planet. And when given a choice you failed to do right by that child, and others, when they needed it most.

--

To the Other Person Who Didn't Make Anything Better When They Could Have,
You know who you are...

In the interest of transparency I will tack on my parting words for you too. You once said to a group of parents, in so many words, that even though it doesn't always seem like you're advocating you are. You are almost right-- it rarely seemed like you were ever advocating.

You once told me I was an anomaly because I tend to be rational. You were making a majority assumption about something-- do you remember? I said I would never do that, because it wouldn't make sense, because it wouldn't solve the problem. And you believed me that I would never do that but you also believed other parents would. That is when you said I am an anomaly. Clearly it never helped me much but you did say it.

Do you also remember when things were at their worst? You told us that there needs to be some amount of accountability with regards to our son's behaviors. I remember when you said it and I remember who else was in the room. Perhaps your initial refusal to acknowledge that his behaviors are a manifestation of his disability makes you an anomaly. For crying out loud even he knows they are. He is very aware when this is happening to him, and is further painfully aware of the struggle to regulate himself (to stop the behavior). He may be the one diagnosed with the intellectual disability but he is not the one lacking intuitiveness.

You would often have a way of ending curt messages with "thanks and have a great day." Maybe you were being sincere but so am I. With any luck may our paths never cross again.


The legacy you both leave behind is one of relief that you've chosen to move on. With all sincerity, my prayers go out to those who have to work with you in the future. May they understand your decisions better than I ever could.

--

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.

--
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. 

--

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.

---
to be continued... 

round and round

I offer a lot of commentary in our fragile x world because it's effective for awareness and understanding.

Today I am sharing these pictures taken after Hayden got home from his second day of summer program. I'm all for capturing a smile any day, but for me these smiles were relief and gratitude following a nerve-racking afternoon prior. One of the worst.

Since Hayden transferred to his current school less than a year and a half ago, I have been commuting him back and forth daily. This past spring at his IEP meeting we discussed resuming transportation one way, in the afternoon. Our most recent experience with school transportation, when he was last in-district, was not a positive one. We have had wonderful drivers and transportation aides in the past but without going into detail, the last two were not wonderful. If it wasn't for the fact that transportation was already a part of his routine and at the time he was still attending a local school, there is no way I would have continued putting him in the vehicle with them. In hindsight I really should have pulled the plug sooner but I could not have possibly predicted that he would no longer be a student in that building anyway, and I would be driving him elsewhere very soon.

Hayden needs to know what to expect in order to be comfortable. Consistency and familiarity go a very long way in our world. Anxiety is a trademark symptom of fragile x and even medication does not supersede the power of genetics. It will diminish at times, but unless it's practically sedating there is no medication that is going to undo what fragile x does (at least not yet). Unfortunately, despite my best efforts, we did not have any transportation details ahead of the first day of summer program. So my plan was to pick Hayden up myself.

Monday morning about an hour and a half after I drove Hayden to school, my father called to tell me that a driver from a transportation company called him. She was confirming pickup for Hayden from school in the afternoon. She said, "Is this Mr. Capela?" He said, "No, it's his father-in-law." This was how I actually learned that they had a route in place for Hayden. About an hour later Hayden's teacher called to share similar information-- which was very nice-- but nonetheless a most unusual phone chain. I can only guess my father's cell phone number was pulled up from an old emergency contact on file when Hayden used to be in district. I do not know if I will ever understand how or why it was easier for someone to access than my own.

Anyway, as discussed with his teacher I went to the school to at least meet the driver and aide. We considered possibly giving Hayden a choice at dismissal, since he was not prepared for someone other than myself to pick him up. Luckily his teacher already spoke to him about it and said he honestly seemed excited. So after I exchanged contact information with them, confirmed the route (how many drop-offs and where in line Hayden would be), and also when I should expect him to be home, I left ahead of them. I felt hopeful everything would be fine. Yes it is about twenty miles including highway travel (which is anxiety-provoking in itself), but the driver actually knew landmarks and street names right near our home.

About 15 minutes after his expected arrival time I was starting to get jittery. There had not been any traffic when I left the school so I couldn't understand what could be taking so long. Then thank goodness the mom of one of the other students on the route happened to message me. I was literally just about to reach out to her so that was a big relief. She said she just saw them (in other words her son was home) and they were on their way to our house. I was incredibly grateful for the update. That 15 minute gap felt like an hour but at least I now knew they were only a few miles away.

So twenty minutes later when Hayden still wasn't home my nervousness returned twofold. I tried calling the transportation company, the bus aide, as well as at least two school administration extensions. The transportation is coordinated through our home district so that's why I tried there first. I finally called his school last, tremendously relieved that I at least got a person on the phone, and they immediately said they would investigate and get right back to me.

They called back within ten minutes and thank goodness Hayden had literally just arrived home. Wasn't even in the door yet. However the vehicle Hayden was in, was actually one of two that showed up to our house-- the transportation company owner (or manager) was in a separate vehicle in front of them (I'll call him Mr. B to make the story easier). Mr. B was very apologetic but initially offered little explanation as to what happened, that my son was arriving home nearly 90 minutes after school dismissed. He started to say something about first day kinks... while the transportation aide chimed in to say they left late, or something about having to go back for something another student needed... and with that the driver added that she missed a turn. I was speechless but thinking to myself she missed a turn 35 minutes ago? And I'm replaying our earlier conversation in my mind and it just didn't add up-- she knew where she was headed to drop Hayden off in between the other two students on the route. Not to mention after leaving the neighborhood where the other student lives, there are three turns to get to ours.

I don't know exactly how to explain Hayden's expression as he exited the vehicle but it was sort of wide-eyed and stone-faced. I didn't like it. He went straight to the front door and all I wanted to do was go inside with him. But Mr. B then proceeded to inform me that Hayden was actually going to be on a different route altogether, with a different driver and aide. Starting the next day. I already had so many questions and so much confusion swirling in my mind I could barely react, except to tell him that I wasn't asking for more change and more adjustment and yet another new transition. But it was all so surreal because I still did not understand what happened. Also, the third student to be dropped off was still in the vehicle! His mother must have been worried sick-- I can not even imagine.

When all was said and done, Mr. B ended up arranging for the next pair of driver and transportation aide to come to our house for an introduction.  Unfortunately Hayden was so out of sorts that we couldn't properly introduce them to one another, but once again I exchanged contact information, etc.

I felt so awful for what Hayden must have been feeling... the confusion and the anxiety and everything else... I just wanted to do something to cheer him up. An hour and a half later when he was finally decompressed enough to (a) eat a very late lunch and (b) follow through with leaving the house, we went and got a truck and Dunkin Donuts. Side note about how off he was... apparently Hayden's lunch sack was misplaced at school, so he also hadn't eaten anything substantial since about 7:30 that morning.

He was still a bit off for the remainder of the afternoon and evening; the respite worker noticed he seemed different as well. Even when Dan got home from Monday night golf league Hayden didn't ask him how he played, which was yet another indication that his mind was stuck elsewhere. As far as I'm concerned it's a near miracle that he followed through with going to school in the morning. But when he did, several conversations took place in a very short amount of time before I decided what to do about the afternoon route. Dan spoke to Mr. B and so did the Principal, and then I spoke to each of them to get their input. And ultimately, together Dan and I decided we felt we needed to have Hayden follow through with transportation. Otherwise who knows when he would be ready to try again-- he has an emotional memory which is a blessing and a curse at times.

All of this is why those pictures have emotional significance for me, too. While there was a student absent from the first afternoon run, so it will still be slightly different the next time around, I think (I hope) Hayden was equally proud of himself for following through. And my hope is, that is what he will remember.

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July is Fragile X Awareness Month. The NFXF is sharing daily fx facts on social media. You can also find these posts on the NJ Chapter facebook page.

* Please click here to visit and share our 2018 support page  *

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...

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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.

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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. 

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