Clouds, May 2010

Clouds, May 2010

Monday, March 4, 2024

hope springs back

Spring fever. Nowadays this is synonymous with behavioral changes or mood swings which coincide with the season. But historically-- you know, 200 to 300 years ago-- spring fever was also known as spring disease because of a common seasonal illness which was actually not allergy-related at all. Symptoms were mild to severe including fatigue & malaise, to bone pain & hemorrhaging of the scalp & gums. Who knew! I wonder if it had to do with poor hygiene & warmer weather meaning people were spending more time together, & therefore contagious diseases had more opportunity to spread? No idea. But now the term is somewhat downgraded & practically slang for simple restlessness. I only ever knew of spring fever in that context & I thought it had to do with a post-winter mindset of people no longer being cooped up. 

Until Hayden. Because he has way too many behavioral challenges almost like clockwork this time of year, yet he is not what I would consider cooped up during wintertime. Often times snow or rain or temperatures for that matter, will not stop him from dragging his bike out or playing in & around his shed. Sometimes, because of the weather, I am trying so hard to get him to come back inside that it turns into an argument. This is why his spring-fever-like symptoms never made sense to me-- he's not emerging after being cooped up! 

More research & reading taught me it's not just flowers blooming & baby animals coming out of hiding, or the Easter bunny & egg hunts, or families gathering for Elijah at the Seder table. Or maybe you're a glass half empty kind of person & you associate springtime with mud, bugs, pollen, brown grass, & bare trees that have lost their magical winter twinkle. Our surroundings are in limbo & I've learned that research shows especially for people with ADHD, or depression, or bipolar disorder, this time of year can trigger manic episodes or other heightened symptoms even more.  

As Hayden's mom I associate springtime with IEP season, also the prerequisite to the one season of the year when his typical daily schedule is abruptly & significantly reduced, & worst of all the season when his behaviors always increase. Personally, daylight savings does not make me feel like I fall back or spring forward, but rather quite the opposite... as if I am falling forward and springing backwards. March Madness, pun intended, would be more accurate.

While the duration of Hayden's behaviors is often less than in his younger years, the frequency really isn't. As far as the severity, that fluctuates. But one major difference versus his childhood is dealing with said behaviors in manhood. And it sucks. It's emotionally draining, & sometimes scary, & needless to say he is not just going to grow out of it-- like teething, or terrible twos, or puberty. 

When I started this post I actually had no idea that today is National Son's Day. This observance was started only about five years ago by a mom of sons, who apparently created this because there was already a Daughter's Day. Well, I started this year's National Son's Day with a conversation with one of the behaviorists at Hayden's school. He was sharing some challenges they've had as of late, & I shared some of this seasonal perspective with him... as well as offering whatever possible insight that I could, when said behaviors occur.

Most of you know there are select staff who have supported Hayden similarly in previous schools... the special few who see right through Hayden's behaviors & they know it's not him talking (or worse) & it's not him being destructive. It's that damn gene. 

The BCBA shared with me that when he walked Hayden to my car after school on Friday, Hayden said to him-- (something along the lines of--) I know you're just trying to help me. Upon hearing that both my heart & eyes seemed to swell but with a lump of pride in my throat & a cracked voice, I said that was very mature of Hayden. As always I made sure to express my gratitude in keeping the lines of communication open, & also for doing so in such a way that is less reporting & more sharing & brainstorming. Hayden sometimes takes a break by chilling out in his office for a little bit & before we got off the phone the behaviorist said, "I have to admit it's partly selfish. Hayden just makes my day."

From the glass-half-full perspective which I am less likely to recognize this time of year, it is people like this BCBA who give me hope in this world. And maybe even springtime. 


--

Wednesday, November 1, 2023

mrs. capela

Mourning someone once is a process in itself but mourning them twice is a different kind of heartbreak. The only thing bearable is if they're not aware of it. Let it be tougher on the rest of us, that is fine... because knowing they're comfortable does give us peace. I was talking to a childhood friend of mine and I said when my mother-in-law got to the point that she didn't know who any of us were anymore, still every now and then when there was a smile or a glimmer of engagement with us-- maybe she even knew someone's name-- I swear we could almost get lost in the moment. As if she only had temporary amnesia instead... that somehow she would magically get better.

So now I am writing to you because that's how I cope. Your health took a bad turn about a week ago after you fell. As Dana said as much as this hurts and we are devastated, you will be better off in heaven than living a life you can not remember. 

But here's what I remember. The first time Dan introduced me, you and Dad were cleaning out the Perry Street house. Infamous Perry Street I would soon learn, with the Capelas being one of five families who raised their kids together... different siblings among them are still friends to this day. Anyway it was evening and you were both elbow-deep in everything you were doing, but perfectly kind. Even though there wasn't much conversational exchange that night... we didn't have a meal together or anything... Dan and I were just stopping by. But eventually there were plenty of dinners, a Yankees game, and various specific family events I remember from very early on. 

We probably all remember my first Easter dinner-- but in my defense it's not that stuffed shells were new to me, it's just not my favorite cheese. That didn't stop Dad from asking me what the heck I was doing-- gutting those poor pasta shells. But while I was also of course the only one at the table not eating your cherished meatballs, for some reason Dan didn't say to heck with me. At least my future son would become arguably your favorite customer of all time. And you know stuffed shells and meatballs aside, years later Dan said since I'm short with brown hair, my name ends in an "a" and my middle initial is "M"... I blend anyway. I also remember my first Christmas with the Capelas. I was so excited to get a stocking-- I think it was filled with toiletries, candy, socks... those sorts of things. Whatever it was, I loved it. We bought you a sweater from the mall and the style was a little bit too fitted for your liking, but I learned to shop much better for your preferences. Over the years we would buy one another lots of purple things and for you, I new anything decorative with cows was always safe.

I remember your excitement for all of the milestones... engagement, wedding, baby, birthdays, etc. You were also both at our home together with my parents when Dan & I went to that first pediatric neurologist follow-up, after Hayden's surprise diagnosis. Every step of the way our memories are inclusive of you and Grandpa. You were both always present for school events, like music concerts or Halloween parades. I hear your voice all the time talking to Hayden, "My guy," you would say. Your grandkids were your world. Logan, Kaitlyn, and Hayden pictures everywhere-- and so much thought with the PA house to accommodate having the kids there. And then Abby came along and re-ignited that twinkle in your eye even more. (Thirteen years between the youngest and the oldest, yet somehow their birthdays are barely a month apart.) 

For most of Hayden's school-age years we would spend time together weekly. When Hayden was very little you would be at our home for him one day a week when he got off the bus, and we would usually get pizza for dinner from the same place every week. You always had the NJ12 local news on the television in the background. Maybe, possibly, complaining about the dog. Dad would say with a smile, "Angelina, relax! Relax like a big ball of wax!" He gave Sammie a treat every time you walked in the door and would sort of box you in with the ottomans after you got situated on the couch, to keep her away. Eventually Dana and Rob moved about fifteen minutes away and you would make the rounds to see all your grands! Once a week-- usually stop by our house and then go there. 

When Hayden was around middle-school age, it was sometime during those years that you became a bit more withdrawn and your visits were more routine than anything else. If you spoke you would re-tell the same childhood memories, typically stories about your cousins and about living in Newark. But eventually you weren't really engaging with us much at all. 

But what I can promise you, is that we will forever hold all the memories that you no longer could. 

When you had to be moved to memory care a few years ago and Dad was moving south with you, it was overwhelming from various perspectives. The least of which was going through each room and all the decades of memories they held-- many of which were first moved from Rockaway, and then Hackettstown. Piles of odds and ends were set aside for donation, or even the dumpster. But I wouldn't ignore all that and I would take a moment to go through them, each time we were at the house. Here and there just a small number of things would come home with us. I noticed how Dan started to recognize and appreciate reminders of you that I put to use or found a nice spot for. And then I remember Grandpa holding that woven blanket decorated with the 12 months-- a holiday or a seasonal design to represent each one. It was always draped on the sofa and folded to display the one end that says the family name just above the bottom fringe, near October, November, and December. Anyway, I remember that moment because he looked at me as he held it up to hand it to me, and he said, "you're The Capelas". Now the blanket is often draped on a sofa in our home, too. 

I hope where you are, in addition to regaining time with loved ones who went before you, that you are doing all the things that made you who you were. Whether it be finding all those sales-- from a department store to a yard sale. (I love how you sometimes picked up something purple for me... I still have one of those little purple glass bowls, I use it all the time.) Or maybe where you are, you can clip all the good coupons from a Sunday paper... make delicious food just like your mom did (so I am told)... definitely tell silly but witty jokes-- (I mean the way you and Dan would go back and forth to the point that we couldn't catch our breath, my parents still talk about that--)... and of course loving and watching over your family and grandkids. 

We are not just continuing on without you, because in truth we are all blessed to continue on because of you. I may share the name but you will forever be the Mrs. Capela. I know I hardly speak for myself when I say I will hear your voice and picture your smile often. Thank you for my beautiful family. And by the way sugar doesn't count anymore so please enjoy all the sweets your heart desires! 





--

Tuesday, July 18, 2023

parent or guardian

This Fragile X Awareness Month post is brought to you by equal parts gratitude and grief.

We're in a new phase right now: Guardianship.

According to the law, Hayden is legally an adult now. So that means we have to apply for something called Guardianship in order for there to be certain safeguards in place. Parents can begin that process through a private attorney or through Arc.

The Arc of NJ supports children and adults with disabilities and where we live it's the Sussex County Arc, or SCARC. Guardianship should feel like a relief I suppose, but as a process it is not fun. It is not only lengthy including all the steps, and time consuming forms and evaluations... but on top of that it can be costly. More so if you need or choose to use a private attorney (roughly up to $4k or $5k). But I was still surprised at the many fees (and some hefty!) even if you file without one. It's up into the four digits either way. You also have to re-file every year-- while not at the same level of expense or time, Guardianship is still not a one-and-done process. It also needs to be established in order to maintain decision making with regards to healthcare, and to be able to apply (or re-apply) for other state services, and much more. But the problem is there's a window of time in between when you temporarily lose some of that access as soon as your child turns 18, because you can not proactively have the Guardianship already established. So at that point you're at the mercy of the state's timeline.

I've learned we are lucky that we are able to file through SCARC, but even more so as Sussex County residents (because they also offer Guardianship services for other counties with Arcs that do not). They have been beyond wonderful. I sometimes think about the slogan on the road signs when you cross over the line into the County, and it says "People and Nature Together"... and how that did not sound like something I would want. The first time I saw one of those signs I didn't even know what to think. I grew up in an upper middle class, suburban neighborhood about 25 miles from Manhattan. When Dan & I moved to this unfamiliar County shortly before Hayden was born, and then learned of our son's diagnosis when he was 17 months, there were needless to say a ton of concerns. Among them, was the fact that we now lived in a rural area. And not knowing what that would mean as far as services and support. And we made assumptions that perhaps a different County with more population, could mean more money, and therefore better resources. We were wrong. Instead of a smaller population of people per square mile translating to less local services, for the most part its meant a little less struggle to compete for providers and availability of said services. My mom recalls this coming up in conversation at one of the specialist appointments early on in our journey, and in response to our concern they said I wouldn't be so sure. And commented that it may work to our advantage.

The Guardianship process itself is a difficult pill to swallow, though... the whole paper trail... I hate the wording.... we are listed as plaintiffs in the manner of an alleged incapacitated person. Our son.


Establishing Guardianship is streamlined for everyone... even a person having been born with a medical diagnosis of fragile x syndrome, for which there is no cure. It's further absurd that persons with disabilities are also required to register with Selective Service, even if their disability would not qualify them for military service. Filing for Guardianship for some people, should automatically cancel out having to register in the Selective Service System.

For as much as Hayden doesn't understand, he also notices nearly everything. He has seen these big envelopes arrive in the mail, he's seen me filling out forms, and he has overheard me on the phone. I also had to try to explain to him why we were going to have a virtual conversation with someone we didn't know (evaluation by a SCARC-appointed psychologist as part of the process), And then I tried to explain why he was leaving school early one day for an appointment with someone else unfamiliar to us, as part of this thing I kept calling "Guardianship". I chose to say something along the lines of... we have to make sure the state knows that we're taking of you, because some people when they're your age can make other adult decisions. Your Guardianship is to make sure they know we're helping you with those decisions. It was not that exactly, but when he still seemed a little bit confused I said that his aunt did the same thing for his cousin a couple of years ago (my niece with Down syndrome).

We had a lot of hiccups with the Physician Certification portion which I don't have the energy to get into. However, if you are a parent who is going to be going through this in the near future, I will gladly explain and answer any questions I can. I am eternally grateful for the moms who did the same for me! At this point I am just hopeful this necessary evil will be completed soon. We will be in receipt of a hearing date and when the case is filed, a court appointed attorney will be assigned to represent Hayden.

This doesn't feel like a happy occasion to me, but I use this blog primarily for awareness so that's why I'm here! On that note, since Hayden's birthday is a week before Fragile X Awareness Month, we happen to be going through this Guardianship process during a lot of awareness being promoted. And World Fragile X Day is coming up on July 22nd! Be sure to post on social media and tell people why! You can wear green, or any other color in the NFXF logo. You can share informative social media posts from the National Fragile X Foundation's page or photos from FRAXA's page-- they coordinate with people in different cities to have landmarks illuminated in blue or teal for awareness on World Fragile X Day as well.

As in previous years, Hayden has his annual page to support the NFXF. Donations can even add up to a chance for Hayden to win some fragile x swag! Another way to participate in the awareness is to simply share his page through this link!

From grief to Guardianship to gratitude... this is certainly a different parenthood journey than we expected. Yet right on par with both the likeness and uniqueness of Hayden.

--

Wednesday, October 26, 2022

community

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. NJ.com 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. 

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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. 

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