“… in the interest of maintaining control over what is shared, when it's shared & how it's shared... it's a perspective that I want to come from me and no one else. But it is also an incredible example of why the structure of the NFXF is so crucial for appropriately supporting our loved ones living with fragile x. Reaching far beyond research to ensure there is adequate awareness, education, advocacy and resources to not only help us through daily challenges... but guide us moving forward.”
I tried to write this months ago but I couldn’t follow through. Stopped and started… then I finished it… then I changed my mind about sharing this at all. Multiple times. Ultimately I do believe that writing about it reinforces a positive sense of control because it may happen again, or it may help others in the special needs community, and truthfully it’s a form of awareness. There may be a fine line between what is TMI and what is not, but I consider this type of sharing to be an education. Educating people who work with Hayden, educating the public, definitely educating people in decision making roles, also first responders… the list goes on. If I can give myself an opportunity to protect Hayden then I prefer to grab hold of it. I hope I am brave enough to leave this here and continue to reinforce some sense of control by educating others.
Just to offer an incredibly abbreviated background for anyone who does not have much context of fragile x or Hayden or both—if you do, skip to the next paragraph—but fragile x syndrome is part of our son’s DNA. It’s a genetic condition he was born with that involves a defect on the x chromosome, which basically translates to him having an intellectual disability. Fragile x is a spectrum disorder and for Hayden, he exhibits global developmental delay, sensory processing disorder, attention deficit, anxiety, and behavioral challenges. Hayden happens to be verbal—he began speaking after he turned 5—but some individuals with fragile x are nonverbal. Fragile x syndrome can be described as a hidden disability as it is not immediately apparent. Hayden does not have any particular distinguishing characteristics, but his most prominent feature is absolutely his smile. Underneath all that fragile x causes, he is an otherwise happy, healthy person with a genuine heart and a loving, empathetic personality.
In the larger picture 2017 was basically a tremendous transition year—while Hayden was well supported at the new school, it was a rough adjustment. In the beginning there were days when not only leaving the house was tough but even getting him out of the car once we got to school. I have shared in the past one example in particular when it actually took three of us to literally pry his screaming, kicking body from my car. Mind you, at the end of the day he would be happy and tell me that school was fun. But this is what’s important to remember—while fragile x does not affect most of his major organs, such as his heart and his lungs for example—the major organ it does affect is the brain, and there is no specific “cure” for this. There is not even anything indicated for the treatment of fragile x syndrome, so medication becomes an arguably grueling process of trial and error to treat some of the symptoms of fragile x.
The first major incident of 2019 happened on a Wednesday. My dad was at our house—possibly Hayden’s favorite person in the whole world. Shortly after he left, without any identifiable antecedent whatsoever, Hayden seemed to spiral as he was getting very heightened. Even though like I said he is verbal, his expressive language continues to progress so often times he is unable to appropriately communicate. Also because he has fragile x syndrome, his brain and body are not always in sync. He threw and broke a cloche and candle in the living room, a framed photo from his Bar Mitzvah which was next to that, and several other decorative items near them. Then he began to actually pull pictures off of the wall, including a shadow box frame of his hand and footprints in clay. I really didn’t know what was going on but trying to intervene was not safe for either one of us. I do not remember all of the details of that particular evening—I only have a rough idea of what happened from looking at text message threads to my husband. But I do remember that he was still heightened when Dan got home, and put a large crack on the back of the bathroom door. And the fact that he did anything like that in front of his father was quite possibly unprecedented.
I, like many other moms, tend to be on the receiving end of the brunt of the difficult behaviors.
Hayden has been a consistent example of that bell curve. Any time he was truly in a state of hyperarousal as soon as he came back down the other side of it—as his mind descended back to a more regulated state—he was done. It would be over almost like the flip of a switch.
So on that day of the next major incident, I texted Dan because we never made it out of the driveway that morning—Hayden sat in the vehicle but wouldn’t even put his legs in the car so therefore the door could not be closed. Eventually I was defeated and we ended up back inside the house. This probably sounds confusing and a little difficult to believe but when he is that defiant I can not safely force him to get in the car, put his seatbelt on, and close the door.
At some point in recent years Hayden’s developmental pediatrician said that I should capture these incidents to track them I suppose, or to simply show what happened. I may not always think to take a picture when these incidents are occurring, but I think it makes sense to take some. When I do remember to take photos, I am conscious of making sure Hayden does not notice. I am concerned that if he saw me doing so, it could encourage even more behaviors. 8:56AM is the timestamp on one of my photos when the living room started to get out of control that day. 10:32 is the timestamp on the next photo, by which time some of the furniture from other rooms was now mixed in the mess of the living room. That’s when things were truly at the point there was barely anywhere for any of us to walk. I wish I had the courage to share these photos for the sake of transparency and “education” but right now I do not. I will share that 3:43PM is the timestamp on the next photo of the living room, everything looking orderly with a vacuum and big garbage bag in the backdrop. My father ended up coming to my rescue that day, so that’s how long it took two adults to clean up a disaster from one kid.
That night Dan and I decided on a different plan for the next day. We followed typical routine in the morning but when Dan left for work, he stayed nearby. I texted him when Hayden and I were safely in the car and able to leave. I still went through my little prevention protocol that had basically become routine for me—backpack and purse on the floor so he couldn’t reach over the seat to grab either one, box of tissues behind my legs, water bottle in the door pocket instead of the center console cupholder, and radio off with the dashboard screen on the home setting exactly how Hayden likes it. Our plan worked, and it was a relief, but the following day the behavior challenges switched back to the evening routine. Completely defiant.
It was actually an okay-day until after school. So just to back up for a moment because he couldn’t put his lamp back where he wanted, and I had to fix the dresser, it didn’t look completely smooth anymore. He may have thought he was trying to work on it or fix it, but I do know from the date stamp on pictures in my phone that Hayden destroyed the tops of both dressers that afternoon. I still believe this stemmed from the fact that it was scratched from the lamp, and perhaps in his mind this was a visual reminder of a mistake (as he was not able to wait for the paint to set). We may never know but we do know he is a people-pleaser and he does not like to disappoint anyone, including himself.
At the time, Hayden’s developmental pediatrician had recently prescribed an in-case-of-emergency medication (an antipsychotic). Hayden’s first dose ended up being administered (i.e. hidden in something he ate) that afternoon, following a sort of cyclone through my desk area in our kitchen (after the furniture incident). Papers, pens, mail, and various other items were thrown about. Some were torn, some had water dumped on them, and others were just scattered. It was a disaster area but further overwhelming because I was very anxious that he may have destroyed things that were important. I went into the bedroom and called Dan. Through my tears of frustration over the fact that a very undesirable pattern had begun, I basically gave him a heads-up of what he was going to come home to. Because it was his birthday and we were supposed to be going out to dinner—something that Hayden would typically very much look forward to. I suggested he just meet up with his brother so the night wouldn’t be totally ruined. I felt confident that we could get Hayden to calm enough after Dan got home, that he could then leave. Dan suggested we play it by ear, and after he got home and sort of assessed the situation he had a different idea. He said he would take Hayden to give me some breathing room, and then hopefully I could meet them at the restaurant.
We were now near the end of May, the 20th to be exact, which was a Monday. That afternoon I happened to be walking into our bedroom and Hayden, being in sort of an antagonistic mood, followed me. One side of the doors to Dan’s closet had been left open and Hayden spotted his old toolbox in there. I was not able to stop him from grabbing it. Apparently I texted Dan that Hayden had a hammer in his hand, but he must have surrendered it because I do not recall any property damage that evening. Often times Hayden’s aggression will be verbal—that’s usually his go-to behavior. Especially if he’s able to stop himself from doing something else, then he will let it out in awfully nasty language. (I am not brave enough to type out an example of his verbal aggression. But worse, it sometimes includes self-deprecating talk.)
The next day was another difficult evening… and around the time that Hayden is usually getting ready for bed, he had not even eaten dinner yet. But that day was not nearly as significant as what happened two days later.
This day was also garbage pickup day, and a couple of the garbage men know us and the ones who do were on the truck that day. One of the guys in particular has always been very kind towards Hayden—he has even gotten him holiday gifts. He has a son with autism and I am guessing he noticed my plates and/ or magnet on my truck so he realized that our son has special needs. Anyway, garbage pickup was a very helpful interruption that day. Hayden of course gestured for them to pick up everything on the driveway but they realized the context and luckily did not collect any of my scattered belongings. But the interaction bought me just enough time that I could safely close up my truck, lock the doors, and even go inside to put the (ugly) new "emergency" medication in a rice treat. Hayden had left something in my truck that he wanted, and I used that as a bargaining tool that if he ate the treat I would go get it for him. It worked but he was still very heightened.
A short while later I called Dan and I remember watching Hayden from the window—he was still in the driveway just making more of a mess with whatever had already been on the ground—and I was watching and waiting for any sign of the medicine starting to take effect. So Dan and I decided it might be best to just let him stay out there and hopefully the medicine would kick in soon. Then he would be calm enough to come inside and I would not have to fear another overturned furniture situation. It was a beautiful day outside and technically Hayden was safe so it seemed like a good idea. But more than a half hour after he ate the treat, he still seemed heightened. Then Hayden started pounding on the front door because he wanted me to come outside and get something else out of the truck for him. Dan was still on the phone and didn’t think it would be safe for me to go outside, and I thought Hayden was headed towards the driveway again. So I went back to the window where I could keep an eye on him but I didn’t see him.
The next thing I heard was glass shattering.
Within about an hour from the second dose Hayden’s demeanor was even more upsetting than the version of him from the night of Dan’s birthday. He essentially resembled a knocked-out fighter who was refusing to be knocked-down. I called the doctor in a panic, suddenly second guessing myself that I accidentally overdosed my kid. I had not. However I had given him a high dose and was instructed not to give him anything else until the next day. I certainly did not want to put another milligram of anything in his body!
So—about that other noteworthy part of this particular Wednesday—there was a Gala that evening and it was one with very special significance. This was a fundraiser and awards presentation hosted by the Chabad through which Hayden became a Bar Mitzvah the previous year. The rabbi who officiated Hayden’s Bar Mitzvah had reached out to my father about sharing this milestone as part of the presentation. They like to include inspirational stories with members of the congregation which is a beautiful idea. So my dad and I had worked on a write-up, the rabbi tweaked it a tiny bit, and as requested we supplied some photos to be viewed on the big screen near the podium where they would be speaking. Dan and I really wanted to be there as well, but the cost per head was a bit of a significant donation for us to cover. It ended up that we were VERY generously gifted two seats to the Gala, so we then reserved a third for Hayden so we could all go together. It was beyond an honor and we were so grateful. While I was mildly concerned with it being about forty five minutes away and taking place in the evening on a school night, more so we were truly looking forward to it. Also hopeful that Hayden would follow through, but we did have a backup plan should Dan need to leave with him—since he was meeting us there from work, we would have two cars.
However, considering everything that happened that day, and never mind the fact that at this point I could barely even imagine us making it there that night anyway—to top it off—Hayden’s outfit was with our neighbor and she wasn’t home. She happened to be at an estate sale recently, and there was a bunch of high-end designer mens clothing which she does not sell at her antique shop (furniture, fixtures, including chandeliers, and also home décor). There were shirts that still had tags on them from the cleaners and some appeared to have never been worn at all. As luck would have it, there was an incredibly handsome button down in Hayden’s size. During that morning’s behavior situation, Hayden spontaneously carried the shirt to my car when we initially left the house (tried to leave the house).
So honestly the idea of us making it to the Gala that night after all, was almost impossible to imagine. But I also felt a little heartbroken. This truly wonderful Rabbi who worked so well with Hayden—and managed to help our son actually become a Bar Mitzvah—was gifting us this special opportunity to share with others about Hayden’s milestone. His Bar Mitzvah had been one of the happiest, proudest days for our entire family. And to have this incredible opportunity for my father to speak about it, was something we were genuinely looking forward to. Meanwhile our neighbor had no idea that Hayden was supposed to wear that particular shirt that night. Just a couple hours before we had to leave we ended up being able to get the shirt back in time.
And with that I’m going to skip to the conclusion of this portion of the story. There’s a picture on my phone from that night timestamped 7:18PM and it’s of Hayden, walking beside my father with their arms around one another, as they’re entering the ballroom at the Gala. The same Hayden who, hours earlier, shattered the front window of our home. We know fragile x has no shortage of unpredictability and on this particular day (which felt like many, many days in one) I can not explain it except to say that Hayden eventually came back down from that bell curve. And that was that. As far as he was concerned my car, the driveway, the front window of our home… it was over and done with.
To share in part what I wrote when I posted pictures the next day on social media:
But on this day, which started out as one of the most awful, it eventually wrapped up with a reminder that Hayden can be stronger than his fragile x.
*The logo on the door said J.G.M. Trucking, Kearny, N.J. The DOT # on the driver door was 2020461 and the rear plate was filthy, but I believe it was NJ plates AT341T. Just thought I’d throw that out there. There were actually two of these J.G.M. trucks but the other driver seemed to be oblivious.
On Friday, June 7th I texted Dan just before 9AM that I could not get Hayden in the car. I took a walk down the road to calm myself—I only went where I could still see him. A couple minutes later I heard Hayden dragging and banging something against the pavement, and it sounded like metal. Slowly I could see it was a very long metal pole, which we have absolutely no idea where the hell it came from. I was legitimately frightened at that point and I really, really, really did not want to have to call for help.
What do I mean by calling for help? Soo just to provide some context… unfortunately even when your child is registered with the state, and getting services from the state, there is no specific safeguard in place for diffusing heightened situations. I mean you’re supposed to develop a safety plan with your case manager, but logistically you may not have a realistic option if you don’t live close to family (for example), or someone who could truly respond in the case of an emergency. So the option is basically a provider on the other end of the phone trying to help you through it or calling 911. New Jersey’s system of care specifically dictates that if you or someone else is in danger, you should call 911. While the Perform Care system does have a mobile response unit, basically they are dispatched when you need to expedite getting authorization for services. However for people like us who already have an open authorization, mobile response does not get involved.
While it’s obvious why any parent would hesitate to call 911 during a behavior situation involving their child—I mean really, it’s an awful thought, just let your imagination run with that for a minute—there are even more reasons why I refused to. We live in a small town and I have enough of a perspective of who knows who. I don’t feel comfortable going into any more specifics but as a personal rule of thumb, I never like to give ammunition (for lack of a better word) to people in decision making roles, who could (in theory) take information out of context and use it against us (more specifically, Hayden). The worst lesson I have learned is that regardless how tremendous of an advocate a parent may be… none of us have the luxury of always trusting everyone we need to rely on.
So back to the metal pole. I don’t remember exactly what I said to Hayden but I know that I said something to prompt him to put it down—with a threat to call for help if he did not listen. He did eventually listen, I was able to get said pole, and slide it under a structure where he would never be able to see it or reach it. First major disaster of the day successfully diffused.
But by 9:30 he was back inside and had already torn his room apart. He then began to take his emotions out on the office. Dan was offsite that day about two hours away so I was SOL. I texted my dad just before 10AM because I could not get the situation under control and it was getting progressively worse. He was at work and left as soon as he could—albeit nowhere nearby—but an hour closer than Dan. My parents had plans in the city that night so after my father spent the greater part of his day helping me, he had to get on the road. About a half hour after he left Hayden started to ascend again.
That day was my breaking point. I walked away from Hayden as he started to overturn anything in his room that was not anchored, and I went into our bedroom and I called the non-emergency number for the local township police department. My fear had turned into uncontrollable tears at this point and in exactly the kind of broken voice that I dread speaking in, I explained to the person who answered the phone that there was no fire and we did not have a medical emergency. Then I said (something along the lines of) I have a son with special needs and he’s having a tough time right now and I don’t have the situation under control. I was asked a couple of questions and then I may have added that I was the only adult with him. I repeated verbatim what the service providers from Perform Care said about contacting the police if I had an emergency. Basically I was still in disbelief that I was calling them.
Three officers responded to my call for help. Side note—it’s amazing how apparently while being emotionally drained from a state of fear, I am simultaneously capable of being concerned about foot traffic across our brand new carpet. Nevertheless it hardly seemed appropriate to ask police officers coming to our rescue to remove their boots (as if that would even be a possibility if I did have the nerve to speak up). As far as Hayden’s reaction to their arrival, I don’t know what I expected but I was surprised that he did not have much of a reaction. They were kind and calm when they interacted with him and tried to prompt a dialogue to better understand if he was trying to do something, and what that might be. For example Hayden had pulled apart his bed so only the frame was still against the wall, and the officers asked what he was trying to do. There was plywood where the box spring had been, because that was broken as a result of other incidents. The desk in Hayden’s room is an old workbench from our neighbor’s shop and Hayden was trying to put the wood on top of it. I don’t really think he was trying to do anything specific, I think he was just trying to figure out where to put everything he had taken apart. However he did give the officer an appropriate answer and said he was trying to build a boat. They assisted in putting Hayden’s room back together to a safer state and as the situation seemed to diffuse, they were getting ready to leave but reiterated I shouldn’t hesitate to call back if I need to. Before they left one of the officers mentioned that he would be working again the following Wednesday and Thursday, and that if Hayden had a good week he wanted to let him air the siren in his car and check out some of the other cool features. They could not have been kinder.
The next day was our niece’s Sweet Sixteen and just as the evening of the Chabad Gala, not a chance that anyone could have had a clue what we had just been through the day before. What can I say? Just another example of dusting off and showing up. And likewise, Hayden was amazing that evening. Truly incredible. He danced, he was social, posed for photos, and thoroughly enjoyed himself. Flip. Of. A. Switch.
My hope was that I would never have to dial that number again.
That Monday, the in-home counselor was working with Hayden after school. The session had gone well, but when they were wrapping up, it was evident Hayden was becoming dysregulated. Sometimes when transitions are taking too long, this can be a trigger for Hayden. And wherever we are I won’t hesitate to leave, or if we’re home ask someone else to leave, when I know what will happen if the transition is not expedited. But this was different and the dysregulation escalated quickly, and his counselor did not feel comfortable leaving. Since the counselor was present, and able to safely restrain Hayden in a sort of bear hug, there was much less property damage. He agreed that I should call for help because we knew if he let go and Hayden got up it would not be over. I could not believe I was calling the police again.
Same as before, when the officers arrived Hayden had a relatively non-dramatic response. (One of the officers who responded that evening knows us because the officer’s sibling used to work with Hayden. I think that gave me a smidge of relief.) The counselor provided some perspective for them and then there was some discussion about Hayden’s medications… they suggested I call his doctor… asked if I wanted to speak with whoever their crisis person was, so on and so forth. Unfortunately even after the situation seemed calm and the officers left, Hayden was still very antagonistic towards me and the counselor was reluctant to leave until Dan got home. And so he stayed with us for hours.
In between all of these incidents I have roughly outlined, there were ongoing conversations with our state-appointed case manager. The possibilities of what could have happened next were so frightening for me to consider, that I can’t even refer to them as solutions. Such as Hayden going to the emergency room for an evaluation, which could potentially mean up to a week of hospitalization for monitoring at an out-of-county hospital, because the one closest to us does not even have an appropriate pediatric department for this type of situation. After which time we would be looking at a stabilization bed (they call it) in a home setting with round-the-clock care for up to ninety days, determined with sufficient proof that the youth can not be cared for at home due to safety. (Other qualifying circumstances could include an ill parent, or incarceration, homelessness, DCPP involvement, etc.)
I think about our gorgeous guy… our Hayden, with his charisma and his sweetness, his genuine heart and that incredible ability to get inside your heart, and his innocent brown eyes and his beaming smile… and the thought of my baby—my heart and my soul— being under evaluation and not sleeping in his room in our home under our roof… I can’t. I can not catch my breath.
This was also the same day that I sent an email to someone for help, and it would change everything.
So I sat down and composed a message. I introduced myself as a parent volunteer with the NFXF, but specified that I was not reaching out as NJ Chapter Leader but rather in a personal capacity. I explained how I was in receipt of this contact information and basically said I understand you work very closely with Dr. so and so, and while we have met many times over the years my son was not a patient there. I offered a brief synopsis of where we’ve been and who currently oversees his treatment regimen. But in essence I communicated that impulsive behaviors of aggression had become borderline non-manageable, and we were in desperate need of help and certainly not in a safe position to wait any length of time. About four hours later I had an email back from this person, and about another two hours after that… a direct reply from the renowned fx expert who the Clinic Coordinator works with. My tears of relief were only interrupted at the surprise of learning that as it turns out, this fragile x expert knew Hayden’s specialist back when they were in college! Both currently a part of the FXCRC*—about as lucky as an unlucky situation could get.
*The FXCRC is the Fragile X Clinical and Research Consortium… originally organized by the NFXF solely to establish fx clinics around the nation (and ultimately internationally)… to provide comprehensive evaluations and treatments, for all fx-associated disorders.
The next date of particular significance was Friday, June 14th. There was an awards ceremony at Hayden’s school and I had literally just learned that he was nominated by faculty members for at least four different recognitions—among them, most improved in Phys Ed and most improved in social skills in speech. I can not put into words what that felt like—again, the juxtaposition to what had been going on at home was surreal. It was in the most literal sense an overwhelming feeling of bittersweet. The measure of our pride when he perseveres is indescribable. But at the same time it just tugs at my heart thinking about what he has to overcome in order to achieve.
As if puberty isn’t enough, all of this was a major transition for his brain and his body. And there were plenty more difficult days—really tough behavior on a random Thursday near the end of June (about a week after his birthday)… and a Tuesday in early July... and the list goes on.
That evening I once again reached out to the fragile x expert who had recently been consulting with us, and I also sent a message via the patient portal to the local specialist who has been treating Hayden since he was about seven years old.
“There may always be times when despite the medication he gets so overstimulated that he can't control himself even with the meds. The medication makes it less likely he will get to that point, essentially raises his threshold, but there can always be times when he gets over the raised threshold.”
August was the first full month that we saw a real consistent, positive change.
As I mentioned earlier, fragile x can be classified as a hidden disability in that it is not immediately apparent (similar to autism in that sense). And like I said Hayden does not have any particularly distinguishing physical characteristics that might be a visual cue, to help someone else understand why they may hear speech or see behaviors that are different. With that, it is possible to almost forget to consistently and appropriately accommodate him. Also because he can be very good at hiding his anxiety.
Some days are fragile-x days and some days are not. Fragile-x days are a spectrum, just like the genetic disorder itself—these days do not all translate to property destruction. Some of the fragile-x days are obvious when Hayden doesn’t want to wait for help (let alone accept it) and then it turns into anger. Other days he could have the exact same frustration but then he simply gets over it.
This is what happened last year and this is what I didn’t want to write about. Hayden is (and we are) in a much better place and we do not take any day for granted. We know that worse days could be on the horizon at any point in his life. But I educate, I advocate, and I communicate so society has fewer excuses for holding that against Hayden or any individual who has to work a million times harder to navigate life, than any of us do.