Clouds, May 2010

Clouds, May 2010

Tuesday, August 14, 2018

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. 
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. 




--

Sunday, August 5, 2018

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... 












Tuesday, July 3, 2018

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.



--
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  *

Saturday, June 30, 2018

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.


Monday, March 19, 2018

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.

--

Thursday, March 8, 2018

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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Monday, October 2, 2017

attention to detail

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

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

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

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

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

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

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

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