Clouds, May 2010

Clouds, May 2010

Wednesday, October 26, 2022


Let's jump right in with this one. There are some side stories here, but what prompted me to write this are some of the dangers which individuals with hidden disabilities face. 

Neighbors who do not know us, but moved to this neighborhood a couple of years ago, recently called the police one afternoon because the daughter was fearful of Hayden's behavior.

There are only a handful of homes on our street and there's a short hill at the bottom where all the mailboxes are. Hayden enjoys going down to get the mail, and I can just see the top of his head from our front porch when he goes to get it. A couple weeks ago something happened at school and unfortunately Hayden was upset and heightened, which more unfortunately carried over even after school. It also happened to be a Tuesday, and sometimes Hayden is very distracted by things that people may have put curbside for garbage pickup the next day (pickers and scrappers are among his top interests). Sometimes neighbors who know us even give him things, luckily (usually) with our permission.

So that particular afternoon we were just about home and before we made the turn onto our street, we passed by a young lady on the right and she was walking a small or medium size dog. I did not see her face because when I glanced over her back was turned. I brought my stuff in the house and whatever else I needed to bring in from the car (with the exception of Hayden's backpack which was still on him, but it usually is not when he gets the mail). Then I got the dog settled and Hayden should have been back in the house by then. So I went outside to get him and I could actually hear him before I even went out the door.

I saw him and another young man who I did not recognize, and I heard the young man say, "Well I don't know you either..." And so as I was walking towards them I said to Hayden, "Hey, Bud-- why don't you go bring your backpack home?" And he angrily replied no, so I suggested he go home and call Pop Z to ask him how his appointment went. And Hayden said, "He's busy," and I said he wasn't and that he could go call him. He actually started back up the hill and before I turned to follow him, I had a brief conversation with the young man. Without knowing exactly the context of what happened I went ahead and apologized, and then I briefly explained Hayden has special needs and sometimes he gets heightened... and the young man seemed understanding and explained that his dad told him to come outside because a neighbor called him, that something was going on. 

When I asked the young man what happened he didn't seem like he was entirely sure, but I believe he said there were two girls who were outside, and Hayden was saying stuff... but at that point there was no one else around (anymore) except for an older woman walking into her home, and those neighbors know who Hayden is. I think I said we live up there, pointing behind me, and then I asked him if he was a neighbor and he pointed in the opposite direction. He was very cordial and I went back home-- I felt bad but there didn't seem like there was anything else for me to do, and I thought that was the end of it.

For approximately a month and a half to two months now, we've had a rough patch with fragile x behaviors. And as I have said many times before, in the interest of sharing our perspective-- which can not possibly be obvious to everyone else-- I try to use challenges as an opportunity. Most importantly to hopefully protect Hayden. 

On October 1st I published a blog udpate which didn't generate much attention but in that update I talked about some of the turnover in our neighborhood. Unfortunately there are unfamiliar people who have already had to get our attention from some of Hayden's recent behaviors. We can hardly ignore these situations and we can't just expect strangers to blindly understand. But trying to tell people they are not in any danger... it's not easy. Separately, we are also trying to help Hayden through working with his school (including one of their BCBAs), speaking with his developmental pediatrician who manages his medication regimen, and also making sure our care manager and providers through Perform Care (state services) are aware of what has been happening. 

So back to that particular Tuesday afternoon, by the time I came back in the house after the brief interaction with the young man, Hayden was already on his way outside again. I watched him go to our neighbor's house (they're friends of ours), and a moment later she called me. I knew he was still a little heightened, so I answered the phone, "I'm sorry--" 
I don't even know that she heard me but she said Hayden was over there having some matzoh ball soup. I looked down at my phone and noticed she had texted me a couple pictures of him with the soup. I said oh, okay, and thanked her... not what I expected, but of course I was appreciative. She said she just wanted me to know where he was--- and I said I saw him walking down their driveway. I think I mentioned something had just happened down by the mailboxes, but we got off the phone pretty quickly because suddenly there was loud pounding on my front door. 

Two police officers greeted me when I opened it and immediately asked if my son was home. I recognized one of the police officers from Hayden's birthday, back in June. It was early in the morning that day, 6:45 or 6:50AM-- I know it was before 7. The people who live directly across the street from us had called the police because they said our dog was barking. Different dog than the one we have now, but that's another story for another day. The only thing I will say is that we do not get along with them... they have bullied us on and off for as long as I can remember (online and offline), and their late dog is part of what started the tension between us in the first place-- many years ago, even before we had Sammie. Unfortunately they used to allow their dog to roam free, simply because she didn't run away. But she also did not understand boundaries so not only did she go the bathroom on our lawn countless times, she even pooped on our deck as well as in our basement (it's exterior access). They would get angry with us for reacting to this, and one time the wife even yelled at me that you can't teach an old dog new tricks. She was not able to recognize she essentially admitted their own fault. 

So the most recent stunt back in June, on Hayden's birthday, was a claim that the time and length that we "allowed" our dog to bark was against town ordinance. I believe it states for no more than thirty minutes, between 10PM and 7AM. And truthfully, for our own sleep schedule but more importantly our son's-- it is not okay with us for our dog to be barking for that long, especially during those hours. Nothing ever came of it because they were exaggerating and at the end of the day, it was just another way for them to bully us. 

But anyway, one of the officers who responded to the incident I am writing about, was the same officer who responded about the dog back in June. So back to this current incident, they came to our door and asked if my son was home. I told them that Hayden was at my neighbor's house (I think I even mentioned he was having soup). They asked which one so I pointed, but I explained he has special needs and they could talk to me instead. They either asked or said that something happened by the mailboxes, and I told them about my brief interaction with the young man who had been outside at the time. 

By the way, behind them I did notice a man pacing back and forth in the street in front of our home. I still don't know who that was but he seemed to be checking up on things. Maybe it was the Pastor-- I'll get to that in a minute. 

The exact conversation with the officers is a blur, and partly because that was one of two times that the police showed up at our house that afternoon. Because by early evening they were back again-- it wasn't even dark out yet. But from the first time they showed up that day, I still did not know very much context-- just that a neighbor had called the police because of some sort of incident with my son. So when I saw my neighbor (the friend with the soup), because she came outside to say hi to our dog before they were on their away out again, I told her what happened. She was so confused how they, too, had missed the whole thing because they got home right around the same time as us. I told her the little bit that I did know, and a few minutes after they left she called me. She already got the scoop and she said it was not good. 

It turns out the young lady who we passed on our way home is a middle school student at a private school, and she was walking another neighbor's dog. So I guess she was still down near the bottom of our street when Hayden went to get the mail. They both live in our neighborhood although neither one of them actually lives on our street-- the girl, and the neighbor whose dog she was walking. The home where the dog is from is much closer to us though.

Not sure what started the interaction between Hayden and the girl with the dog, but like I said Hayden had been heightened that afternoon. And the girl felt cornered and scared, so much so, that she facetimed her mom who I believe is a police officer in Essex County. Her mother said she was leaving work to head home and told her daughter to record everything so she would know she was safe. 

Either the mom or the daughter called another neighbor for help, a Pastor I believe, who lives maybe two houses down from theirs. (May have been the man I mentioned, who I saw in the road when the officers showed up.) I believe he is the neighbor who then told his son to go and see what was going on. The son is the young man who I spoke with in the street earlier. 

An hour or so later I was able to speak with the mom because my neighbor who had called me, gave me her phone number, because they know one another as well. When I was on the phone with the mom she explained that she was the one who called the police, and she said she would not have if she knew who it was or who we were. We had actually met very briefly when they just moved to the neighborhood. They had taken a walk up to my neighbor's house, and she lives just diagonal across the way so we were out in the road and had a quick introduction. I remember Hayden being outside at the time with his bike and trailer, and my neighbor was telling them how my dad is always building stuff with him-- the trailer being one of the latest examples at the time. This was a really quick interaction though and they truly may have forgotten. 

I sincerely apologized for how Hayden made her daughter feel and I explained that no one was in any physical danger. And not that she would know this, but I also wanted to explain that Hayden seeing the phone most definitely heightened him even more. He knows that whatever he was feeling to cause him to behave in such a way, was not how you're supposed to behave. And just as his mind can get stuck, his body can too-- so unless she had walked away and ignored him then he would not have been able to begin de-escalating or move on. I was not accusatory in any way whatsoever... I was only sharing for perspective and maybe understanding. But I imagine this was a lot for the mom to take in. And worse, I also learned that Hayden said something to the daughter about going back where she came from... or going back to her neighborhood... I am not sure. I can only guess that he literally meant for her to go home, probably because he wanted to be left alone and for the attention to be taken off of him. But the facts are (a) she was afraid and did not realize he has special needs, (b) he is a young white guy and (c) she is a young black girl... and it stands to reason how his words could be misinterpreted.

They would not know that racism isn't even in Hayden's vocabulary. They would not have known that we are an interfaith home. And truthfully, there is no commonality between my ancestry and Dan's. We do not even share the same political views. For such a small household, we are actually quite diverse.

Later on that evening, Dan suggested I ask the mom if a brief introduction between Hayden and her daughter might be beneficial for both of them. She was very receptive and I said you're welcome to come out and say hello if you see us walking by with our dog, or we can kind of set a time... and she said weekends are best... so I reached out that Friday and said we would be around the next day... but unfortunately I did not hear back after that. 

At some point in our conversation though, I did explain how I used to speak with the students every year from 1st through 5th grade (until Hayden went out of district), to have a conversation about fragile x. I never called attention to things they didn't already notice, I was just explaining why they may hear speech or see behaviors that are different. But I also wanted to reinforce for them that he has a lot of the same interests as they do. I shared a flyer with her that I used when Hayden was in middle school, and I said she could certainly share it as well-- with anyone who may be interested. 

But during this part of our conversation she also said if I had approached her, she would have definitely appreciated that. As glad as I was to know this, I said I honestly never went to any homes in our neighborhood to introduce myself and/or distribute any information about fragile x or Hayden. I said there was never any appropriate opportunity or setting I suppose, and for me personally, unfortunately I don't feel comfortable doing that. 

As previously mentioned, yes, the police were called to our house twice that afternoon. The second time there were three officers. One of them was one who had been there earlier (the officer who had responded about the dog on Hayden's birthday), and another officer was someone who knows us a little bit... years ago his sister had worked with Hayden. Also, not sure he remembers this, but he was the officer who responded when the bullies across the street called the police on us another time, years ago, over our (now) late dog. Again, something about barking and in the same breath they were accusing Dan of vandalizing their truck by blowing leaves on it. Unfortunately for as long as we can remember they have encroached on our property. While we never vandalized anything, they have always parked one or two of their vehicles next to our property line. And in addition to the vehicle or two, there was (until recently) a boat and trailer as well. And before that it was a camper. And this little area that they have assumed as their own-- even went so far as to put a little retaining wall of railroad ties (with reflectors) and had gravel put down (twice)--is not their land. But it is not ours either. It's across the street from their house and it is owned by the water company in New York. And I don't think the water company cares what the heck they do, as long as they are not blocking access to the water tower. One time said neighbors even mailed us a letter to say that they have permission to use that spot, and included verbiage such as, "don't make us contact our attorney." I am borderline embarrassed for them, but either way we never complained enough to fight to have their stuff removed... because they would retaliate to no end. They are the reason we finally got security cams around our home a few years ago. 

As far as what just happened with the police being called, I don't even know who the neighbor is who called the second time that day. (It wasn't those neighbors though.) I just know that it was also in response to Hayden, but the police were rather vague. 

What I do know, is that there needs to be some sort of protections in place for individuals like Hayden. I wish I knew what or how. There's no sign for that-- like the yellow ones you see in a neighborhood to alert people of a "Deaf Person Area" or "Blind Person Area". This is for the safety of those persons. 

For the most part, Hayden looks like nothing should be different. I've tried to find statistics about people with hidden disabilities, to better understand the prevalence. published an article back in February citing that an estimated ten percent of the country's population has a condition that may be considered an "invisible disability". And NJ alone has the highest rate of autism in the country. Worth noting that among the genetic causes of autism, fragile x is the most common known inherited single-gene disorder... and according to the CDC, a national parent survey revealed that 46% of males and16% of females with fragile x syndrome have been diagnosed with autism spectrum disorder. And if more individuals with autism were tested for fragile x, then we know those percentages would be even higher. 

When we talk about hidden disabilities it means it's not immediately apparent. When people do not have a visual cue to give them some sort of immediate perspective, then they often judge because expectations do not match what a person is used to. Even people having a diabetic episode or seizure can be misunderstood as being under the influence of drugs. 

When an individual with fxs is experiencing a heightened state, it’s called hyperarousal—when their central nervous system is in a heightened state of altered arousal. Any fragile x expert will maintain that individuals with fragile x do not have anger and aggression issues by nature of their character, but may manifest when they can not cope (as with most human beings). The issue being of course that everything is heightened in their world… their senses unable to process all the information around them… their chromosomal defect making them more prone to dysregulation… and thus everything is either under-expressed, over-expressed, or expressed inappropriately… all while they are constantly battling anxiety.  (And neurotypicals think they have it bad.)

A bell curve is often used to illustrate this state of dysregulation or hyperarousal, whereas they can barely process information during those moments. A behavior intervention will not be successful during a state of hyperarousal because their mind has to finish ascending before it can descend. But once they come back down the other side of it, the dysregulation has passed (hence the bell curve) and they are returning to a centered, balanced state of mind. And in Hayden's case, he is terribly remorseful-- he is aware when he is dis-regulated and he hates that it is happening (as I explained when the girl had her phone up, because she was very scared). 

It's inappropriate for Hayden to have a consequence from such an extreme misunderstanding. But in the immediate, we did want to take preventative measure to reduce the probability of a repeat incident. So since Hayden had gone beyond where he should again that day (prompting a second call to the police), we took some privileges away within the context of not listening to mom. And that's all that we focused on. We also said if he was going to get the mail, he needed to come straight home. One time I tried to get him to stay closer to the house by telling him there was a bear sighting. He immediately responded that the bear was gone. 

I know that I have been in countless situations when someone is making me feel uncomfortable so I do my best to ignore and move on. This young lady may have been so terrified that she froze. I never want anyone to feel that way... I never want Hayden to feel as heightened as he can get... and I do not have all the answers. But I will continue to make sure our perspective is known, and hopefully increase understanding to decrease misunderstanding. Because the worst thing is probably not having the cops called, but people distancing themselves from him. I think that breaks my heart the most. 


Saturday, October 1, 2022

I don't know what I did to deserve you. 

You were perfect from birth-- big, sweet face... a large, healthy baby... proportionate with beautiful features. Your eyes-- so new to the world that all of your firsts were yet to come-- opened at the subtle sound of a crinkle from a wrapped pacifier, when they took your very first picture at the hospital. Eyes, ears, fingers, toes... everything as it's supposed to be. All of your newborn senses seemingly just as they should be. We had the luxury of welcoming you into the world on our own terms. The lengths that people have to go sometimes to have a family... the amount they have to endure... the process of starting a family is hardly simple for countless parents. And we did so when we were ready, & it was as simple as that. And I got to experience pregnancy, & to carry you full term. (Well, you were a couple weeks early but that was a blessing at your rate of growth.) 

And I have to add you were beyond photogenic... from infancy, to toddlerhood, & through your childhood years... not a single awkward stage. (You're still photogenic but the difference now is that you like to make facial expressions that sort of get in the way of that.) But you were/ are a gorgeous kid, even before & after your surgery to correct the exotropia. Even your hair, by the way-- which very few truly know how amazing it is. Some see it after a haircut when it's quite short, or a tiny bit peeking out from under one of your baseball hats (that you rarely like to remove from your head). But the natural texture & color in the light is something that not many get to see. We've watched you mature from when those big, wide curls were a golden, strawberry blonde until around 4 years old... & transitioning from more golden to more brown over the next couple of years... & even now at 17 the highlights from your baby years are still there when the sun gets to see your beautiful brown hair.

Handsome young man you are. You must be a living, breathing example of where the saying, "a smile that lights up your face" comes from. You have that natural twinkle... that pure, unfiltered smile... & those innocent, curious eyes. Even when that fragile x gene tries to take over & you are heightened as hell, your eyes have never matched your anger. Through the awful words, the angry stance, the clenched hands, & the frustrated, snarling mouth... your eyes look like you are fighting so, so hard. My own eyes well up just thinking about it. Heartbreaking. Tonight was rough. And when Dad got home you told him "she was fine" (addressing our new dog) & that you were a little coo-coo, you called it. Hayden, buddy-- I know you understand enough to know that you have a really difficult time sometimes, & from a pretty young age you were aware of a developmental gap between yourself & your same-age peers. But of course with all of your behavioral & constant sensory challenges, the genetic intellectual disability creates a very unfair confusion for you. 

None of this is your fault. And these genetics have really made themselves known lately. The amount of times I have had to apologize to strangers in recent weeks--- (who are also innocent & confused--) is really starting to take its toll. A couple weeks ago it was waiting in line to pay for something & name-calling everyone around us. Then there are too many days to mention when you threaten other cars on the road because you don't like the way they're driving.... around us, or near us... that person needs to get out of our way... another person needs to stop following us... the next car over at the light is being a moron... me at the wheel with my anxiety heightened because when you put your hands together in the shape of a gun & point towards someone, I imagine my worst fears. How I wish I could build us our very own road every time we need to get from here to there, & back home again. 

And I can't say any of this to you. Not in the way I'm saying it here. I can't tell you the new neighbors on our street have already gotten our attention from your behaviors, too. We can hardly ignore these situations & we can't just expect strangers to blindly understand. But trying to tell people you really are sweet & they are not in any danger... it's not easy. You're a young man who looks like nothing should be different. But the explanations get tiring. The fragile x days interrupting, changing, or altogether preventing our plans... that gets tiring, too. And sometimes sad. And sometimes things are great for a long stretch of time & other times they're as they are right now. Definitely not great. 

My Hayden. Those are the times when I unfairly think to myself, for completely different reasons, what did I do to deserve you. Which makes zero sense because you're just trying to live with the hand you were dealt. The amount of guilt I feel when that self pity rears its ugly head, feels worse than the self pity. We know these behaviors are a phase & we've survived them before, but they will likely come & go throughout the lifespan. And I wish I could tell you how I am so sorry for that. I am so sorry for all of us.

 I know living with fragile x is all you have ever known. You don't know this life any differently. The way that fragile x challenges you & fights you is not from a loss of function... it has always been something you were forced to function with.  And even though I experience the brunt of your behaviors more than anyone else when you are at your "worst", you also know that no matter what I will never not be your mom. At the end of the day, regardless just how bad the day may be, I will never not be your mom. And when you have that much trust in someone, I think you don't know where you end & I begin. And if in any of your heightened moments I get overwhelmed in return, at the end of day you would never not be my son. You know, the way a neurotypical person your age might tell their parents they denounce them. Not you-- your love for us is unconditional.  And I am sure my heart is not nearly as pure as yours, yet I was still chosen to be your mom. 

And then I think about that, & once again for completely different reasons I don't know what I did to deserve you. 

Thursday, February 10, 2022

75 years of zemories

 I wrote a poem about my dad in one of my first writing courses at college, in the fall of my freshman year. Titled Invincible, it was three pages of surreal situations (accidents, injuries, and close calls) that he has lived though. Beginning at three years old when he had scarlet fever and chicken pox at the same time, and in the same year fell out of a two-story window and landed on concrete... through a whole host of other stories I covered that had happened up until the time that I wrote the poem in 1994. 
The stories haven't ceased even now, but we're all beyond grateful they're much, much fewer. He has always been one to do a lot, so a lot happens. 

Probably when people think of my dad they remember the boats over the years-- most friends and family enjoyed time on them with us. Some of our childhood friends may even remember the Austin-Healey or the Triumph TR6... possibly not by name, but the little red sports cars. Most know about the scrap metal business, and also that scrap metal goes way back in the Zamelsky family (even though my dad's wasn't technically the same exact business of my great grandfather and grandfather). 

But it's the stuff you wouldn't see on paper (so to speak) that makes it really cool to have him for a dad. And he had the hair to go with it, by the way-- he would literally stand in front of the stove in the morning and let the steam from the tea kettle perfectly curl it. Hilarious but also awesome. He played the part-- when I was growing up he was like a guy in a movie who didn't need a stunt double. He could walk on his hands across the family room, he could barefoot water ski, he could slalom snow ski, he had motorcycles, he participated in the parent team of my high school jello wrestling event when I was a senior... and honestly the list goes on. I thought it was awesome that a candid from that day ended up in my senior yearbook, especially since he actually graduated from the same high school about thirty years prior.

We had a set of Britannica's at home but most of the time we could just ask my dad and he would have an accurate answer... about whatever it was. And I don't know that MacGyver ever impressed me much having Barry for a father. But I was often amazed how much math he could do in his head, and at the same time know some of the most random, rarely used words and how to spell them correctly.  That one still gets me.

Jenna and I never had a curfew because our friends had them so I think our dad just didn't see the point. When I was seventeen I got drunk at my friend's boyfriend's party and at the end of the night I didn't have a ride home so we had to call my dad to come pick me up. I remember him driving pretty fast on the way home and threatening me if I vomited a single drop in the car. The way that MR2 could handle those turns wasn't helping anything and he knew it. He also gave me Alka Seltzer when we got home and knew exactly what that would do to me, too. But the following morning after I woke up, was what really struck me the most. Not the hangover. But that fact that he came into my room, sat on my bed, and thanked me for calling him the night before. 

At some point around the time that Dan and I got engaged my father told me he was getting my car serviced. It was a good car, there wasn't anything wrong with it-- maybe he said he was putting snow tires on it. I don't remember but it was the end of November so I would've believed it. Anyway, when we went to the house and he gave me my keys back he said, "a new start for your new start." I was so confused because I looked in my hand and that was definitely my keys but there was an extra remote on the key ring. He had a remote starter installed as a surprise.

He gave the most epic speech on my wedding day and then addressed Dan, and also fooled 200 guests, into thinking he was literally giving us the keys to a new home. I remember rolling my eyes as the entire ballroom gasped, Dan laughed, and then my dad said something along the lines of, "I'd like to but I can't" (cue the band hitting a couple of drum beats followed by a loud tap to a cymbal). He continued, "but what I can do is give you the most precious gift we could offer, our daughter's hand in marriage." He did however surprise me for real when it was time for our father-daughter dance, and he had the band sing an oldies song that he re-wrote the lyrics to... to make it about me getting married. 

I knew I wouldn't stop calling him for everything under the sun even though I now had a husband. And I love that before long, this habit rubbed off on Dan too. Of course now Hayden video calls Pop Z nonstop from his iPad. I guess the habit is passed on from one generation to the next! Although Hayden has everyone else in the family beat by a longshot because he practically stalks my dad. Pop Z isn't too bothered by it but they leave me out of it-- for example if my parents show up on a Saturday or Sunday afternoon and I didn't know they were coming because Hayden made plans with my dad. 

Jenna and I had a wonderful relationship with all of our grandparents. They were so loving and involved from the time we were born. But the bond Hayden has with my dad is on another level. I don't know what it is-- they have had an indescribable connection from the beginning. They're always twinning, or working on little projects together... or both. If we're ever somewhere and Dan and I can't find Hayden, or my mom can't find my dad, we figure out where one is and we'll find them both. Hayden was the first grandchild and initially when I became a parent, my dad was expecting he would sort of have to take a step back. He often comments how his relationship with Hayden is so much more than even the best he could've hoped for. 

75 is quite a special number. A milestone birthday at three quarters of a Century. Also the year I was born (ha). And probably the number of times a day that Hayden calls Pop Z. 

To the guy who gave Jenna and I our awesome curls... and would tell people when we were growing up not to mess with his Harley or his girls...
To the guy who literally always thinks of others first... and makes the toughest times seem not so bad when they'd otherwise feel like the worst... 
I hope each year continues to be balanced with tons of happy memories, a little craziness, and plenty of fun... and may 75 just be the beginning of more wonderful chapters to come.

Wednesday, September 8, 2021

ain't too proud to brag

 I just scrolled through all of our Ring camera footage in the hopes that something Hayden did today was captured, but two of the cameras only caught the tail end of it so the perspective is lost. 

I was inside when I heard him release a deafening shriek. For a split second it terrified me-- a bear was the first thing to come to mind-- but a scream of that volume was also familiar. I haven't heard it with quite that much gusto in a while, but luckily I very quickly realized what time it was & that my dad had arrived. Hayden didn't know he was coming to visit him today, but it's also worth noting he just saw my dad the day before yesterday. 

The start of a new school year is typically bittersweet for me... hopeful for learning... for progress... for Hayden to gain confidence & useful life skills, etc. But it's also a subtle reminder that he's a 10th grader only by the number of years he has been in school. And actually because we opted not to have him start kindergarten right when he turned 5, he would in theory already have his learner's permit... & have been practicing being behind the wheel all summer. 

Bittersweet also because even though we love his teacher & there are other wonderful people who work with him, it is also a very small school. It's a beautiful building in a lovely setting but it is a very small population of students. There are some advantages to this-- the pandemic for one has certainly emphasized that perspective. But among the downsides, for one, is much less opportunity for socialization. 

Every school year we inch closer to a future reality for him, & all of the difficult adjustments & transitions that will come. But something as simple as his genuine, heartfelt excitement to see my dad really highlights another perspective. And it's something that a speech therapist from elementary school pointed out to me many years ago... how his Mayor-like presence wasn't anything I did & that it was all him. It was always the way he would make people feel. He is undoubtedly motivated by people who are genuinely excited to see him. But the fact that he so openly reciprocates in such an innocent, warm way without holding back... is rather rare. Especially for a teenager! 

He's not self conscious about being excited to see someone. He's not worrying about what his happiness & enthusiasm might look like. He's just Hayden. (People at school know what I'm taking about-- they've witnessed this at one time or another over the years, in the pickup-line at the end of the day.) And while I know there are some wonderful teenagers out there who are truly kindhearted, I've never met anyone who screams with that much enthusiasm & joy unless (maybe) they're at a concert. 

So as I scroll through social media & I'm a little more aware of differences (happens most often in August/ September & May/June)... & I'm a little more aware that I don't have a sophomore in high school with his learner's permit... & sports accolades or academic accomplishments.... I'm reminded that I do have a teenager who still has a smile that could melt your heart & light up an entire room. Because his heart is authentic & unfiltered.  And there may not be a bumper sticker which captures that sort of essence, but I'm proud of Hayden's happy-scream. And every once in a while I give myself permission to brag about that. 


Thursday, July 22, 2021

July 22nd

Couldn't let today come to a close without some sort of blog post. Fragile X Awareness Day is a day when people all over the country & all over the world put extra effort into raising awareness about fragile x syndrome, & fragile x- related conditions. July is also Fragile X Awareness Month so there's been a fair amount of awareness in my social media feeds, & that will continue for another week or so. But today is the official annual Awareness Day on the calendar. 

Fragile X Awareness is important so no one feels alone. I happened to speak with a couple of parents today who recently reached out because they needed help with something. Even being an ear for someone else can have a reciprocal calming effect, too. But if I didn't have the comfort of family, friends, & other parents in the fx community... I don't know how I would even put one foot in front of the other. 

Fragile X Awareness is important because individuals with disabilities either need to advocate for themselves, or need people to advocate on their behalf. If we do not shed light on societal issues that can further hinder their way of life, then not only does this unnecessarily hurt them but it also creates a societal burden. What they need are appropriate protections & opportunities... so they can be contributing members of society. 

For me, the biggest reason why fragile x awareness is so important....
There are many, many genetic disorders. But when it comes to inherited genetic disorders, that puts the importance of awareness in a whole different category.

In my family we traced the gene back to my maternal great grandmother, who had no idea she was a carrier. And certainly never knew it was fragile x syndrome that made one of her three children so different from the other two. And then my grandfather, who by the way was a physician, would have no idea that he was a carrier & would pass this gene to all three of his daughters (also in carrier form). He would have no idea why he had tremors later in life, to the point that he could barely walk (FXTAS, Fragile X-associated Tremor- Ataxia Syndrome). Of course his three daughters (my mom & her sisters) wouldn't know that they were all carriers. His son, who would also become a doctor, would not carry the gene as it can't be passed from father to son.

One of his daughters would have FXPOI (Fragile X-associated Primary Ovarian Insufficiency), & the other two daughters would have children. It's a flip of a coin whether or not a woman passes the gene, & my mom's sister did not pass it to either her son or her daughter. Then my mom had her first child, my sister, & the gene was not passed to Jenna either.

I was the last chance for that gene to make an appearance & no one had any idea that it did. I was born with a full mutation of fragile x syndrome but because females have two x chromosomes, sometimes the other one compensates. Which is exactly what happened in my case. Even though I am not a carrier like most moms, still the full mutation would give me a 50/50 chance of passing on the fragile x gene... which again, we were unaware that I had.

And that brings us to Hayden.... the reason for my commitment for raising awareness. I don't know that the perspective of all this can even scratch the surface of just how grateful we are, but if you participated today (or this month) THANK YOU. For posting on social media, wearing green, or donating to Hayden's annual fundraising page for the NFXF. And a special shout-out to the anonymous donor, thank you so much. 

Fragile X Awareness is only effective because of amazing people like all of you. 


Saturday, July 3, 2021


Thanksgiving weekend of 2014 we went to a local pet rescue center to meet a prospective dog to adopt-- a chocolate lab puppy which Hayden would not go anywhere near. Then one of the women working there asked us if we had met Sammie. We did not recall seeing a Sammie on the website so she told us she was a 5 year old hound. We had our hearts set on a retriever, but she suggested Sammie's disposition might be better for Hayden. So they called up Sammie's foster mom & a little while later a young woman came in with a dog who didn't seem all too enthusiastic about being there. Turns out she was a long-legged coonhound mix which was a breed we were not at all familiar with. 

But within a minute or so none of that really mattered because Hayden just casually accepted the leash from the foster mom & literally started to head out of the building. This is a child who barely cared about visits to the zoo & generally speaking showed little or no interest in animals. But with that, of course Dan scrambled to catch up with him & grab food & a bed, while I was suddenly writing a check. Next thing we know we were on our way home with a strange dog & welcomed a new family member into our completely unprepared-house.  

We soon learned she was not 5 but going on 7, & after looking through her paperwork (yes, she actually had a fair amount of it) we also learned we were her fourth home-- two were in Georgia & two were in NJ. Her first family named her Sammie-Sweetie & it appeared everyone after that kept it. If they thought she was so sweet we don't know why they let her go, but they all did. We kept her name to avoid confusing her but dropped the Sweetie part (we thought Sammie was fine as-is). 

Sammie fit right into our family. We quickly realized she was 50% sweet & 50% stubborn (maybe 60/40). She would like schedules & predictability, & would not like if things were out of routine. She would never be just hungry-- she would get hangry. And she would almost always act like she was doing us a favor when we pet her-- eventually start barking until she got a treat. It's as if she was trained to expect a prize for sitting there & tolerating having her belly rubbed or her back scratched. Other times she would practically push her head into us-- either our hand, or our leg-- because she didn't want us to stop. But she'd still expect a prize for her attention efforts. She would generally be an impatient dog & also would not listen too well. We would learn she was not a fan of other dogs, but she was a people-person (or a people-dog) especially with adults. She would not exhibit much athleticism (playing catch, etc), but she would certainly be on high alert if a Fed Ex, UPS, or garbage truck was coming up the road. It wasn't long before we realized just how much she would have in common with Hayden.

She joined our family over Thanksgiving weekend six & a half years ago, & sadly left us this Independence Day weekend. This morning, July 3rd, we had to put her down. She was 13 1/2. She was the absolute sweetest pain in the ass, probably much like a human teenage daughter, but with unconditional love mixed in. She completed our family. And rescuing an adult (almost senior) coonhound instead of a retriever puppy turned out to be the very best unexpected plan we could have ever imagined.

I don't know whether or not she'd be impressed with a rainbow bridge, but as she slipped away I whispered, "look for the trucks & the cookies." 
R.I.P Sammie Capela
January 2008 - July 2021 

Tuesday, May 25, 2021

superhuman strength

Hayden's developmental pediatrician, the doctor who manages his medication regimen, has wanted Hayden to have bloodwork for some time now. This is due to one of the medications that he switched to a couple of years ago. At the earliest time that it would have been appropriate for him to get the first blood test, which was within the first year of taking it I believe, it did not happen. Less than a year after that, the pandemic happened. His visits with the developmental pediatrician went virtual, but he did have an in-person visit with his regular pediatrician for his annual checkup. Based on his health at that time, the pediatrician said if we did not yet feel comfortable bringing him to a lab for his bloodwork that we could wait. Well, now we're into the following calendar year. At his most recent scheduled visit with the developmental pediatrician, the concern was voiced that now it really is time. The latest script for the bloodwork was due to expire soon as well. 

Dan & I planned to attempt this today. The last time Hayden had bloodwork he was just a little kid-- (due to suspicion of Lyme disease--) & he doesn't remember it. The time before that he was barely a toddler & that was the big one-- just before the fragile x news-- because he was tested for everything under the sun to try & determine the cause of his developmental delays. So knowing that he didn't have a point of reference (if you will) for getting a "blood test", I simply told him you don't have to answer any questions (he takes things literally). I said it's a tiny sample from your arm, & it's really quick. He was immediately anxious but I reminded him he felt the same way before the dentist, & before this appointment & that appointment, but then after he got it done he was always proud of himself. Naturally, he also wanted confirmation of a prize after. 

The developmental pediatrician referred us to a lab within the same healthcare system, & explained that they are experienced handling all kinds of kids.

When we called the lab to schedule the non-question blood test, we found out they only do walk-ins. I explained our situation, did not sugarcoat the challenges this would pose, & they said as long as we come between 10 & 2 they would have the maximum number of technicians on staff because the morning & evening hours are more staggered. They also suggested having one of us go up first to register Hayden so it's less wait time. Called again about an hour & a half ahead of our likely arrival time, & I gave them a heads-up about what time we would be there. The woman I spoke with said she gave the lab his name, so at least they'd know who we were when we got there. Dan arrived first & what do you know, they wouldn't let him register Hayden without Hayden being present.

Then they told us that only one parent would be allowed in with him & I re-explained that this had been communicated ahead of time because we're going to need all the help we can get.  And the only reason I was able to reiterate that-- (not a smart thing to say in front of Hayden--) is because Hayden had sat down on the other side of the waiting room with Dan, who was now on the phone with the insurance company. Why? Glad you asked. They needed to know ahead of time which lab they could send the sample to for testing, so it would be covered.
Hashtag #ThanksForTheHeadsUp & #AppointmentsMatter

Went to a sub-waiting room for a short bit, & when they finally called us in there was one person.
Also worth noting that moments before I saw a mom & her baby exit the middle exam room, with said person, who proceeded to tell us to enter the same room. So now I’m painfully aware that the room wasn’t sanitized between them & us. We walk in & although the paper on the exam table looked like it hadn’t been touched, the chair where you sit for the blood draw had a plastic needle cap on it. I was at a Kohls recently, & they wouldn’t even call the next person up to the cashier without sanitizing the entire counter-- true story. And here we were at a blood lab within a children’s hospital on the heels of an unprecedented pandemic. Lucky for us, no shortage of sanitizer in my purse so I did my thing.

Anyway, this woman—albeit friendly, because she was—was also not getting anywhere near putting that needle in his arm. She went & got another woman to try. Same thing. So we finally asked where the others were & they said they were all at lunch. Silly us for not communicating with them ahead of time so they knew when to anticipate our arrival. (Oh, wait. Nevermind.) We did however remind them that they had told us to come in the middle of the day, to be able to accommodate him.

So the next fun part was waiting for the others to return from lunch. All of this extra wait time which should have been avoided was of course increasing his anxiety.
But it gets better.

During that time one of them saw a notation on his paperwork & asked if he had fasted. I said no he did not.  (A) I did not realize he should have, but (b) that would not be possible without being able to schedule an appointment. Also worth noting that at one point, one of them offered Hayden Lorna Doone shortbread cookies & a juice cup… to try & help him calm? I guess? And even if she didn’t know his diagnosis, she knew she just offered a snack to a kid with special needs without asking mom or dad if he can have that or you know… has allergies or something. Nothing important. (There were also sticker offerings-- I think he left with half a dozen or so.)

I calmly said no thank you to the snack & added that he has a strong gag reflex, & that when he gets upset he could throw up. Also added that he doesn’t drink juice (so they offered water). Side note, if we needed him to fast ahead of any bloodwork, even with a hypothetical appointment, one more minor complication is that we can only get his daily medication in him with food.

When everyone returned from their lunch break we were then directed to an identical exam room next door-- sanitized status unknown, but thank you for the extra transition. We love transitions. And waiting. But most importantly more than an hour after we arrived, & with the strength of 6 adults (including me & Dan) to restrain Hayden, they got the blood draw done. One of the technicians was a young, tall, strong-looking guy. He took a step back after it was done & he said to no one in particular, "he is strong." I responded with a nod, & said "we communicated this ahead of time.".  I am not so sure he heard me with all the commotion, & the people, & the face masks. Also not so sure he realized he repeated himself, but as he was still catching his breath he said again, "he is strong." I said, "yes, pediatric because he's still a minor but certainly not in size." He heard me that time & then looked at me in agreement, & I think he may have repeated himself one last time. Nice man, & I appreciate the way he approached Hayden when he walked in the room, but he was not prepared for our Hayden. (We tried to tell them.) But when you have that much solid weight of anxiety in front of you, & you drive said person into a fight-or-flight mode, you're going to get an almost superhuman strength. (A couple of years ago when we went through that particularly tough time with him, one of the days when he became very heightened & out of sorts he actually moved part of our sectional with me on it.) Hayden does not know his own strength. Separately, he also has an emotional memory though. For this & other more obvious reasons, I have already communicated to his developmental pediatrician that we need to figure out a way for him to be better assisted in the future.

In addition to Hayden yelling during the blood draw that he hates blood & "why are you doing this to me" & "why are you so mean to me".... he also communicated many times over (especially beforehand when the first two technicians attempted the blood draw on their own) that we need to call Grandma & Pop Z & tell them where we are & what's going on. He kept telling the technicians he needed to call his friend, his buddy (a.k.a. Pop Z). It seems when Hayden was in crisis today, Dan & I got demoted. 

Fast forward to us finally getting out of there, & Hayden wanted to go in Dan's car. After all, I brought him to that place so I guess he preferred his dad to take him the hell away from it. So I called Pop Z on the way home because I figured Hayden would try to call him as soon as he could. And since my dad was working, I wanted to give him a heads-up because he might not be able to answer the call-- especially because it would be video. 

Hayden ended up waiting until after a previously scheduled session with his in-home counselor this afternoon, & then he called Pop Z from his iPad. Just going to interrupt that thought for a second, because when I picked Hayden up early from school his teacher said he was all pumped up & ready for his blood test. Hayden definitely knows when there are opportunities for him to be proud of himself, & for others to be proud of him. So this is also why I wanted to share what happened today, because his conversation with my dad opened with Hayden exclaiming, "I got good news! I got my blood test! It went fine!"
He also proceeded to tell Pop Z that he's getting his COVID shot next week. Mind you this is news to us, but more power to ya kid. 

Then later, he called Grandma Suzi from his iPad to ask how her nail appointment went (which he must've heard about from Pop Z). I was within earshot & it sounded like she showed him her nails... & he said they look so good... & he wanted to know who did them... & how long it took... & then he also told her the same new-news about getting his COVID vaccine next week. Apparently. 

About that prize, by the way, his birthday is not for another month but I gave him one of the presents I had set aside. Honestly, if I had the means I might've given him an entire store today. Or an auto body shop. Something.
After everything that happened today, I just keep hearing his voice, "I got good news! I got my blood test!"
That attitude. That 's the superhuman strength right there.