Clouds, May 2010

Clouds, May 2010

Thursday, August 22, 2024

different books

 


On this week's episode of normalizing differences, a piece of mail that arrived while we were in Maine was confirmation of H's first annual re-filing of his Guardianship. (Yes, papers need to be re-filed every year. It's an abbreviated process compared to the initial filing, but it is not a one-and-done thing.) We submit an annual report of well being, accompanied by a doctor's certification. The timing of our re-filing just happens to coincide with Back to School & because I know so many people with same-age young adults, my social media feed has been absolutely flooded with dorm tours, parents coping with leaving a piece of their heart in another state, or adapting to becoming empty nesters altogether.

I am adapting to another Chapter of Different, too, but in this story my young adult is not going off to college. I've thought about somewhat re-doing Hayden's room & allowing him that excitement of his own room tour, ahead of starting his own new chapter in the Young Adult Program at his school. I still may but as far as he's concerned, this would simply be in the context of replacing his comforter which I just recently noticed has a tear in it. And/ or his two dressers because a couple of drawer bottoms aren't holding up. (Knowing Hayden he would expect the same room refresh again, this time next year.)

On the heels of our annual Guardianship reporting we also have an upcoming assessment next week for Hayden's DDD eligibility. The DDD (Division of Developmental Disabilities) uses a standard NJ comprehensive assessment tool (that's the literal acronym for it, NJCAT) to help providers & support coordinators understand needed services. It is a couple hours long evaluation (say a little prayer for us next Thursday) to identify the need for support in three main areas: self-care, behavioral, & medical. The results also establish Hayden's tier, which will determine an annual budget for services.

Ahead of this assessment we also have another important upcoming appointment which was rescheduled from late July. If you saw my last blog post you are correct, this is the Fragile X Clinic follow-up that we were supposed to have about a month ago. The day we missed said appointment was one of three very fragile-x days that Hayden had within the span of about a week. 

To sprinkle on a little more uniqueness, ahead of our Maine trip I noticed that Hayden would run out of one of his meds while we're away-- unless I had the script refilled early. This has happened to us before, & the doctor called the insurance company to put in a vacation code for the script (or something like that). But he is still a newer patient with the current Clinic. When I called to explain the circumstance-- which by the way sounds so simple but the process was beyond-- ultimately a clinic coordinator told me the nurse practitioner rejected my request to put a refill through because this one med (for ADHD) is a controlled substance. I am well aware of this but (a) I wasn't reinventing the wheel here & more importantly (b) what did they expect me to do. (About a week later, during out rescheduled follow-up, I would learn that this situation was also a result of the Nurse Practitioner not yet "knowing" us, as newer patients of the Clinic.) 

As I was literally at the point of changing the start of our vacation over this whole thing, the pharmacy finally told me that I have done everything I need to do & they would take care of it on their end. To which I did not understand so I repeated (through my building anxiety) the issue of the timeline... to which the pharmacy manager said I don't need to take that tone with her (you know, the tone of a special needs mom who is fighting back tears through this high anxiety situation who knows she has done everything she can & should do & is being told there is no more for her to do so it's sounding like her son isn't going to get his medication). But it turns out this was the pharmacy manager's way of communicating that they will fill his script before the insurance authorization expires & then I can pick it up 2 or 3 days later (whatever it was exactly) right before we leave. Which if she had said that in the first place, instead of me having to figure that out on my own, perhaps I wouldn't have sounded like I was taking a tone. Which was never a tone to begin with, but rather me trying to speak without crying because I had just about had it

For future reference, Hayden's doctor has recommended (especially in terms of the ADHD medication) that lowering his doses leading up to a trip will help stretch out a prescription. I think this would depend on Hayden's behavior trend at a given time, but otherwise duly noted.

At this point I hope September is borderline boring. Because the end of July & August (so far) have delivered up plenty of things

One of my favorite quotes-- unfortunately I do not know who authored it-- is:
"On particularly rough days when I'm sure I can't possibly endure, I like to remind myself that my track record for getting through bad days so far is 100%, and that's pretty good."

So whatever stage you're at, let's raise our imaginary glasses together in recognition of the next Chapter... however different our books may be. 
 
to be continued...

Wednesday, July 31, 2024

endless X

I have one more thing I want to share as we close out Fragile X Awareness Month. And thank you again to everyone who posted on July 22nd for World Fragile X Awareness Day! And especially to everyone who continues to raise awareness throughout the year.

Just in case I don't say it enough, the continued support is appreciated immeasurably.

So, here we are, July 2024. In recent months Hayden had a pretty good start to the Young Adult Program that I previously spoke about, which they started transitioning him to as he was finishing 12th grade. When I talked about his new job training (a different location than the previous school year), it was one of those happy successes that I was excited to share on social media-- including (which some may remember) that he was very happy to be paid in pizza.

Unfortunately, the following week, Hayden's fragile x got in the way on work training day & escalated to the point that a difficult decision had to be made to end that particular opportunity. The goal, or hope, is to revisit a different one in the fall. While I understand the perspective of the school having had such a long-standing relationship with this particular business, & giving their students opportunity which they certainly do not want to jeopardize... this was of course upsetting for obvious reasons. And furthermore as Hayden was getting to know his new schedule he would be hyper aware of something missing or being different. 

Then the very next day, during Community Based Instruction (CBI), that damn gene got in his way again. He was just mentally stuck on something, & the fixation made him heightened & caused another difficult behavior in public. It's my understanding that start-to-finish the incident was about 45 minutes & required them to call the school for backup where two more staff were requested at the particular location where they were, to help de-escalate & get him safely back to school. By that time he had missed his lunch period so he ate lunch in someone's office when they got back (or wouldn't really eat). It ended up the next thing on his schedule was Culinary class anyway, where I was told he made a grilled cheese sandwich & was excited about that. But you see this is what happens... we live in a world of bell curves.
Individuals with fragile x syndrome, when they are ascending up that bell curve, there is little intervention that can be successful. Sometimes distraction techniques will work but there isn't any one thing that is going to work every single time. That x chromosome can seem endless sometimes but when they come back down the other side of that bell curve, that particular incident is done. Sometimes we just have to wait for that, while making sure that safety is a priority.

With these two incidents occurring on back-to-back days, I did not finish responding to one before the next happened. But my initial response following the incident at his work training, was to redistribute his Positive Student Profile which I last updated when he started 12th grade & remains relevant. (This positive profile is basically a brief guide about fragile x & specifically Hayden's learning style, as well as common triggers & possible solutions.)
When the second incident occurred the next day I tried to dissect the situation & then responded to their email to offer some perspective about his anxiety. If you yourself or someone you know suffers from anxiety, you may understand it can be a bit like depression in the sense that it is often not immediately apparent. But it is within a person & it is something that they are not able to control. In Hayden's case I think sometimes when he feels so out of control, he tries to control anything that he can. And imagine you have an intellectual disability on top of that, so in that moment he was not able to communicate verbally. But instead, wouldn't move forward with the task at hand & this was his way of gaining some amount of control (vs the loud cursing & wall kicking from the day prior). Being that they were off-site & not in the school building, this was an added problem. Like I said that x chromosome can sure seem endless sometimes. But his heightened state will always finish when he's ready, just not before. 

That Monday was Fragile X Awareness Day, so I had previously reached out about sending in little swag bags for the staff & peers in his class. Everything was so well received & they even took a group photo which I shared on the NFXF NJ Chapter page. It was a relief that we got through those tough days & it ended on such a positive note.

So I thought.

The behavior finale of that very fragile-x week he had was the next day, the day after World Fragile X Awareness Day. 

When I arrived to pick Hayden up he came out of the building very heightened & immediately stood at the passenger window leaning in, yelling at me, spitting a little bit in the process, & refusing to get in the car. At one point he did open the door & started punching me in my arm which quickly turned to trying to trash my car-- by throwing anything & everything about-- whatever was within arms reach. When the staff was able to move him towards the building he then proceeded to move whatever else he could-- this included planters & a sort of outdoor storage box that they use for deliveries. Pretty quickly he turned his attention to the landscaping & then they had him surrounded with blue gym mats-- to help contain his wrath I suppose & for mutual safety. This was all unraveling out in front of the school, during pickup time, for all to see. 

At this point Hayden was on (& pretty much covered in) the ground, tearing out plants & flowers, & then he uprooted a small tree. By himself of course, & needless to say with his bare hands. An entire small tree. There was no landscaping left in that immediate area to the left of the school entrance. It was thrown about along part of the grass & walkway. looking similar to the aftermath of a storm. Enough time had passed that I missed my appointment-- I had arrived a few minutes early to get home in time for a virtual appointment. We were supposed to have a follow-up with the Fragile X Clinic that afternoon.

Can't make this stuff up if I tried.

Eventually when Hayden was calm enough I handed one of the nurses the spare bag I keep in my car & they brought him back inside to change his clothing. I have to say we did see glimpses of Hayden in the middle of all this, while that damn x was rearing its nasty head beyond his control-- he may not be able to suppress it, but you can actually witness moments when he works around it. I mean at one point when they were bargaining with him to get him inside to change, he looked up & smiled in agreement-- through his dirt-covered face, hat, & everything else. It made me think of the grilled cheese sandwich in culinary following that CBI incident. These are some of the moments that pain my heart so much it feels like it could break. I absolutely hate what that fragile x gene does to him.

Anyway, Dan ended up abruptly leaving a meeting so he could leave work to meet me nearby & follow us home. The original plan was for him to meet me at the school because I didn't feel safe traveling with Hayden, but he seemed calm enough for me to start driving & we decided not to add a transition. 

Last month I shared a memory on Facebook that is very heartwarming to me, from when Hayden finished elementary school. At the time that I shared it, the local Seniors were finishing their last week of high school classes-- the graduating Class of 2024, which is technically Hayden's graduation year. Even though, as I've explained, school for him will continue with a Young Adult Program until age 21. This memory I shared was one of-- (not the only one, but one of--) the last positive memories while he was still a student in-district. I explained that suddenly there were new hires in the Administration & although these people are no longer part of our local school district (& have been gone for years), at the time this change was very negative. Then I added in my post that even though Hayden landed on both feet in a wonderful place, between the abrupt change all those years ago & more unexpected changes that we've been faced with since then... I wouldn't wish this journey on someone else. Doesn't change the fact that we feel beyond blessed for the teacher he had at his last school, as well as the teacher he had the past couple of years in his current school... & certainly doesn't change how grateful we remain for the experience Hayden had through the end of elementary school. I was just pointing out that this one memory-- from nearly eight years ago-- was one of the last great memories when he was in district. 

People we've known since way back when added some very heartwarming comments-- people who were arguably as strong advocates for Hayden as us. Then, suddenly, someone had the nerve to send me a nasty message on Facebook after they saw that post, to actually tell me how insulted they were. I do not have an explanation for this, but after I picked my jaw up off the floor I responded by saying, "I beg your pardon but you were not responsible for what happened." But that didn't stop them. They even added that despite me, they will always have love for my son (?) & I need to get over myself. At this point I ended the conversation by wishing them well-- with whatever they were going through, which clearly has nothing to do with me-- & I also said, "Your words actually make so little sense I'm borderline concerned your account was hacked." There was no additional reply after that so I unfriended them. 

I will not get over myself. For the rest of my son's life there will be people whose job it is to be responsible for him. Let that sink in & then try to tell me I should get over myself. Hayden is not my job, he is my life. Being an advocate for Hayden is a combination of never-ending support & gratitude for anyone who does right by him-- I've always said there's a reason that we hold those people so dear, & are forever grateful for those who have remained a part of our life. But another part of being an advocate is of making sure that other people do not do wrong by him or if they do, we get to work & we use our resources & our knowledge to right that wrong. I know that x chromosome seems endless & very strong sometimes but all the more reason why I need to help Hayden navigate through it.

Should anyone ever be insulted by what I share, then please don't read what I share. I am endlessly & unapologetically going to continue doing what I do. 

Thank you from the bottom of our hearts for joining us for another month of awareness! I remain confident these efforts will guide the community to acceptance. xo

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. 

--

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.