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. 

--

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.