My
last blog post was July of last year. I joked that before I skipped two seasons
entirely, I wanted to give a recap of recent months. And now another two seasons
have gone by so I guess I’m starting to form a bad pattern. At the time, in the
context of Fragile X Awareness Month, I said I wanted to share about our most
recent fragile x- related challenge. And to quote myself:
“… 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.
Our 2019 began
with my husband learning that his position at work was being eliminated. Now
putting aside the way this could impact me and Dan, for individuals with
fragile x who are consistently comforted by familiarity in schedules and
predictability in routine—this is arguably even worse. We were VERY lucky that
within just a couple of months my husband had a new opportunity, and we had a
new regular routine. This was still a major adjustment for Hayden and additionally,
before any of this even happened, we had already been experiencing more
frequent behavioral challenges with him. In hindsight I believe there were other
earlier triggers.
Back in 2017 Hayden’s transfer out of district (to a different school) was
so sudden that initially I commuted him back and forth. As he became settled in
his new school environment and familiar enough with the route there and back,
we began preparing for him to resume transportation (at least for the daily
route home). After more than a year this was finally put in place when he was
ready, and the summer of 2018 had been the first time since Hayden transferred
out of district that he was comfortable enough to resume taking school
transportation. We anticipated continuing the routine in the fall—I would drive
him in the morning (there are a long list of reasons why), and then he would
take the bus home. But the 2018-2019 school year began with a curveball, and
his bus assignment was unfortunately a major problem which could have and
should have been prevented.
I’m not comfortable going into detail about the logistics of what
happened, in writing. So instead I will share that all of this has a ripple
effect for Hayden, but more challenging, often times the intensity of how something
affects him is delayed. For example after starting middle school in September
of 2016, everything took off on the wrong foot. To no fault of ours, quite the
contrary, as we had spent the greater part of the previous school year
preparing for this transition. Getting Hayden ready, and helping to inform
those who were supposed to be working with him. The foundation for his
education in elementary school was phenomenal and I could not have handpicked a
better team of people to have worked with him. All of our efforts aside, middle
school was like a one-eighty. But as far as the delay in how all of this impacted
Hayden, it was not until the winter/ going into 2017, that there were behaviors
so significant that we didn’t recognize who our son was. Over the course of a
couple of months he had been sent home from school when he wasn’t actually ill,
and then also suspended. Twice—for five and then three days respectively. Every
time I had to pick him up or he was not permitted to return to school, I stumbled
to explain to him and lied. I blamed it on winter recess, or the weather, or
anything I could think of that would not make him feel bad about himself over
something that he still needed to learn how to control. To no fault of his! I
feel like I lost a piece of my heart that winter.
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.
About a year from when Hayden transferred to the new school, I went
through the process to put state services in place for him through New Jersey’s
Perform Care system. So now that he was settled in his school environment we continued
to make sure he had the help (we all needed) at home, too. We were assigned a
case manager and then worked together to develop a Family Intervention Plan.
When the authorization for services is approved it’s visible to different
agencies that the state contracts with, in order to locate providers—therapists,
counselors, etc. These service providers began working with him in the home
setting, some of which were not a good fit and we had to start all over again,
but eventually we found better matches. Once Hayden had a chance to start
building rapport with them, he seemed to be doing better. But after the New
Year there was a gradual regression in Hayden’s behaviors, as well as our progress
managing them. By mid-April 2019, things took a scary turn.
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.
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.
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.
One scary difference last year was that he would ascend again.
The next incident was the beginning of May. Mind you, when one of these
extreme behaviors happens to occur in the morning, it’s arguably even more
difficult. There is just something about everyone being ready to go and start
the day, but then no one making it anywhere they need to be. And when days like
this coincide with really beautiful weather, that sinking feeling is even worse.
Just. Being. Stuck. Not only a day
wasted, but a beautiful day wasted. It is an awful feeling and would further
break my heart that he would not be getting a damn thing out of the day either.
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.
Before 10AM he had already torn his backpack and lunch apart—his school
folder and whatever remained of his sandwich was scattered on and behind the
couch. He dumped his full water bottle out (with ice) on the carpet and threw
his snacks—some at me. I retreated to our bedroom for a number of reasons—I try
to model behavior for him of what he can do when he’s feeling overwhelmed, I
went where I feel comfortable when I am overwhelmed, and basically I went in
there to protect myself while I needed a moment. That particular day this only
prompted Hayden to pound on my bedroom door. I was afraid at one point that he
was actually going to break it—because it sounded like that’s what was going to
happen—but by some miracle he did not.
Three days later… didn’t even make it to 9AM that morning. I texted Dan
a picture of our overturned living room and barely able to type I simply
captioned the photo “current situation”. There was so much furniture thrown
about that there was nowhere for Sammie to walk.
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.
About a week later we happened to have new flooring installed in
Hayden’s room—it was actually ordered a while back but a couple weeks had
passed until the installation was scheduled.
That day while he was at school I also refinished the tops of his dressers,
to match his new bookshelf. (Never mind the fact that the only reason he had a
new bookshelf was because he literally destroyed the other one during the last
major behavior incident.) He loved the
way everything looked but did not love that his lamp wasn’t on the dresser
where it should be, as the dresser was still drying. Often times anxiety is
associated with people trying to gain control of any little situation—in Hayden’s
case I believe the behavior has more to do with that, versus (for example)
obsessive compulsive disorder. Anyway, I reiterated to Hayden that the lamp could
go back in its place that night. And he could even leave it plugged into the
same outlet and place it on his desk/ workbench in the interim. Didn’t go over
well and that dresser top needed a lot of retouching.
The following day was one of those rare times I honestly wish I could
have pressed a do-over button. It was the sixteenth of May, Dan’s birthday.
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.
I cleaned up the kitchen, as well as myself, and was able to meet them
at the restaurant. Again, this was the first time Hayden had that new in-case-of-emergency
medication in him. And by the time I got there he was basically a shell of
himself… not sure how else to describe it. I don’t even think he cracked half a
smile, and like I said typically celebrating someone’s birthday—especially his
dad which he would be most excited for—the happiness and joy would
normally be an exuberant amount. Instead, I saw this almost stone-faced young
man across the table. Barely speaking. He ate a good amount of food, drank like
he hadn’t seen water in I don’t know how long, and as soon as he was done he
simply communicated that he wanted to go home. He looked like he was ready to
conk out. I told Hayden I could drive him home since we had two cars, which at
this point I felt perfectly safe doing so. Didn’t think it was a bad idea
anyway, so Dan could just hang out with his brother and enjoy a little more of
the evening. But I suppose we should not have been surprised that is not what
Hayden wanted— if he was leaving, we all needed to leave. So we did our best to
get through dinner without directly answering him every time he repeated about
wanting to leave. I guess the medication was preventing any further escalation,
and a short while later we left after finishing our meals (and Dan blowing out
a candle on a little dessert). Already I hated this “emergency” medication.
Two days later I found myself once again unable to get Hayden to follow
through with night time routine. And I literally could not even get his iPad
from him. After about forty minutes of him screaming and cursing at me, I
texted Dan. I had turned off the WiFi but his iPad also has data through my
cellular plan. And if I forget to toggle the button under the settings, then it
will automatically give him internet access. But every time I tried to get
close enough to him to get the iPad he was kicking me so I stopped trying.
About an hour later he threw it at me voluntarily—not sure I’d call that
progress—but then I couldn’t get him to stay in his room anyway, so what did it
matter at that point.
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.
Wednesday, May 22nd, we were supposed to go to a Gala that
night which I’ll explain more about in a moment, but he was genuinely looking
forward to it because my parents would be there. Hayden was also supposed to be
going on a school trip that day. He always loves trips but his anxiety can get
to him beforehand, so his incredible teacher was being very conscious of
carefully helping to balance his excitement and anxiousness. We can all
understand not wanting to follow through when we’re anxious, but even
excitement or anticipation can negatively impact a person with fragile x. So on
this beautiful Wednesday we walked out of the house, made it to the driveway,
and that was the beginning of the end. Hayden began grabbing things out of my
truck until he basically emptied the contents of my car all over our
driveway—everything from my reusable shopping bags, to the floor mats, and even
the case of bottled water in the back. So everything was not only scattered,
but also wet. And this included shredding and crumpling paper towel all about,
including dumping a spray bottle of glass cleaner—both of which I kept in the
back of my truck because he doesn’t like when his window is dirty (you know,
from his own fingerprints or whatever). By the way I curse that damn push-start
technology with key fobs that are programmed to unlock the friggin doors when
you’re within a certain distance from your vehicle. Whether or not that falls
under smart technology, it is truly one of THE dumbest. And worse, dangerous. I
literally could not keep Hayden out of my truck as long as the keys were on me,
which they had to be.
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 seconds I
discovered the noise I thought I heard was quite scarily correct, and worse, it
was my son’s hand that made the sound against one of the front windows of our
home. By some miracle he was fine, completely uninjured, zero blood. The window
was shattered but still stuck within the frame so no shards had flown anywhere.
The broken glass however startled the hell out of him, because I don’t think he
realized that could happen. Once Hayden was inside and I again made sure he was
okay, I re-read the label on this in-case-of-emergency medication.
Apparently amidst my fright and upset, I interpreted “daily as needed” to mean
he could have another dose. In the throws of the situation I thought obviously
the one dose is not working. So I prepared another treat. I told Hayden that he
should chew it and it would help him calm, and I do not know why or how but he
obliged.
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).
Our neighbor was
leaving around the same time—this was all before the garbage pickup—and when she
stopped in front of our house for a minute to say hi to Hayden, he went into
(what I call) “pickers mode”. Our neighbors literally have a white van just
like the one on American Pickers, minus the Antique Archeology logo on the
sides. Even though she was driving her minivan that day and not the
pickers-style van, Hayden often gets into this lets-make-a-deal mode with her (or
especially her husband) because he associates them with one of his favorite
shows. So if he’s outside playing by his shed for example, and they drive by,
he’ll try to make a deal with them over a broken piece of lawncare equipment or
a sign or something. However on this particular day it was the shirt, and he
proceeded to hand it to her through the passenger window. She could tell he was
heightened and kindly played along and accepted the shirt back from him.
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:
“Yesterday evening the Chabad had their annual Gala &
Awards Ceremony. People across different generations in their community were
recognized & honored, from teens to grandparents for their various contributions
& humanitarian efforts. For the three Capelas, the juxtaposition to the day
we had that day—something I will blog about at a later time because I’m not
even in the right headspace to go there yet—is just surreal. Although at the
same time a real & truthful part of raising a now-teenager with fragile x.
Anyway, we are honored, to put it mildly but I can’t think of a stronger word,
that Hayden becoming a Bar Mitzvah last year was one of the inspirational
highlights of the evening. And while our pride never fades even when we go
through the types of challenges we’ve had in recent weeks, the Gala for us was
the most beautiful heartwarming reminder to Just. Keep. Going.”
There were so
many incredible components to that evening and it truly deserves its own
highlight. I will at least say from the moment we arrived the appreciation on
the Rabbi’s face, that we made it, was very evident. And I only hope that the
extent of my gratitude was equally apparent.
And after my father spoke about Hayden becoming a bar mitzvah and the
Rabbi unexpectedly asked for Hayden to come up to the podium… this kid of mine
who seemed almost a different person than he was that morning… proceeded to
walk halfway across the ballroom and up the podium in front of hundreds guests,
without hesitation. At which point the Rabbi gifted him with another truck. (If
you missed the video on social media last year, he had presented him with a
truck when he became a Bar Mitzvah.)
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.
Unfortunately as
this season went, things got worse again before they got better. On Wednesday
June 5th we had our living room carpeting replaced—again, flooring
that was ordered the same time as Hayden’s but this installation was even more
delayed because the product was apparently on backorder. Little did I know the
brand new carpeting would basically get broken-in just 48 hours later from
several people in boots walking across it.
Thursday, June 6th we had a bit of a tense situation on the
way to school. Traffic can be a major behavior trigger for Hayden, as well as other
factors such as someone driving like an absolute you-know-what. So,
about 8:30 in the morning we were merging onto the highway and there was a
truck to my left that started to move over to the right lane which I was
traveling in, except there was no room for him. I tend to reserve my “road
reactions” for extreme situations—because otherwise, Hayden will react to me
reacting. I honked this time because I assumed he/she could not see me. But the
truck kept coming over to the right lane anyway, and I was actually forced off
the road into the shoulder. I didn’t come to a complete stop because since there
was no one in front of us, I was able to get right back on the road. As I was
back in the right lane, the truck was now behind us, until I noticed in my
rearview that they were going into the shoulder. Next thing I know the truck
sped up and was actually driving alongside us, in the shoulder! And then at the
last second when we were exiting the highway, they cut right in front of me. I
don’t even know how there was room for that or how I didn’t end up slamming
into the back of that truck. We were both bearing right off the exit, and at
the next light I needed to go left but the truck was going straight, so we ended
up stopped next to one another. I look over and the driver is flipping me the
middle finger. I could now see the driver was a male, a balding guy with a
beard and mustache*. He put his hand down when he saw Hayden in the backseat. I
think that morning was the beginning of a perfect storm of events.
*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.
But unless you know firsthand what it’s like to have to call the police
on your child who has special needs because you can’t get a situation under
control… then I promise you can’t begin to imagine the range of emotions.
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.
Mind you I
was beyond exhausted at this point. I mean aside from that particular day in
June, this had been months of “bell curves” and it was simply draining. There
had already been many conversations with the team of providers working with him
through state services, and of course the developmental pediatrician who
manages his medication regimen, plus people who work with him in school, and so
on.
By mid-May I had also been assigned a parent coach but
ultimately decided that her involvement was completely unhelpful—a combination
of premature timing before a formal behavior plan was in place, and also I
don’t think that we were the best match for one another.
The day
after the second time I had to call for help, Tuesday, June 11th,
Hayden had a dentist appointment. Which would almost be like a really bad joke
if any of this were even remotely funny. Even more hilarious, we didn’t know
until we got there that they had put Hayden on the schedule with a different
dentist than the one he had always seen. I can’t even tell you for sure why I
didn’t bother canceling the appointment, except that maybe I just wasn’t
clear-headed enough to do so. Perhaps I was a robot in survival mode at this
point, and if the next day on the calendar said dentist at whatever time, then
that’s what our next steps were. But I feel compelled to share there are few
things in this world that Hayden hates more than having to lay back in a chair
under a bright light while someone inspects and pokes around inside of his
mouth. The dentist happens to be a nice guy but Hayden usually just cries and
sometimes vomits through the whole thing. Sensory issues plus anxiety basically
combine and explode. On this day, after everything we had been through in
recent months, Hayden followed through with a complete stranger for his dentist
appointment like an absolute friggin champ. If I hadn’t been there to see it
with my own eyes I would not have believed it. He did not have that “emergency
medication” in him. He was not exhausted from upset. That damn switch was just
flipped the other way that day.
This was also the same day that I sent an email to someone for help, and it
would change everything.
Up until
this point, every day I had just been trying to survive and get through it. It
was still tough to wrap my head around how it was even possible that this was
our son. I didn’t think he would ever have behaviors this severe—puberty or not
we just didn’t understand. I finally had a conversation with a friend who has a
longstanding involvement with the National Fragile X Foundation (NFXF), and on
a personal level, was like a mentor to me when I became part of the Community Support
Network of the NFXF. I abbreviated for her what had been going on and she
immediately had a suggestion of who I should probably contact. She went through
a short phone chain and then got back to me. I was given the name of an FX Clinic Coordinator
from a different state, who I was advised to contact via email. I tried to be
brief while maintaining a sense of urgency, because this crisis mode had gone
on long enough.
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.
Ultimately Hayden’s
medications had been adjusted almost immediately following feedback from the
two fx clinic doctors—the fx expert who I had just reached out to, as well as
the specialist who had been managing his medication regimen all along. Coordinating
with one another the solution was narrowed to three goals: spend the greater
part of our summer weaning him off of one medication (for anxiety), while
simultaneously introducing a new medication (for anxiety), and then eventually
increasing the dose of his other existing med (for attention deficit).
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.
But the 11th
was really the day… the first time since adjusting his medications… that we saw
very extreme behavior in the afternoon. This was the third and final time that
I ended up calling the police.
Hayden
spotted a piece of wood when we were getting out of the car early that
afternoon, after he got home from summer program at school. It was a 2 x 4 left
over from something – I don’t know. May have been a project he did one day with
my dad. I think that’s what started it because Hayden wanted to bring it inside
and I was prompting him to keep it outside… and I lost that battle. It went
from bad to worse when Hayden got very upset that I wouldn’t give him a
saw. He should not have been surprised
by my answer but then again he should have known better than to ask for that in
the first place. He started overturning the furniture in the living room and
the situation escalated from there. Once again the in-home counselor who Hayden
genuinely likes and works well with, was not able to leave for fear of what
would happen next. It was a little after 3PM when I called for help.
Two officers
responded that day—one of them had also responded the first time I ever had to
call them, on that Friday in June the day before our niece’s Sweet Sixteen.
This time around he was trying to see if there was some other way he could
help. I remember when he was standing in our kitchen he called ambulatory
transport for advice. He stumbled to explain to them because how do you
communicate a situation like this. Society is used to terms such as mental
illness but that’s not accurate or appropriate to describe an individual with
fragile x syndrome, who has neurological impairment. Mental illness is hardly
synonymous with a genetic condition, or a learning disability, or global
developmental delay.
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.
Here is part
of the response. And while we know this in the back of our minds, it’s a hard
truth to swallow. Especially as these individuals approach adulthood because
medication can not be a substitute for appropriate therapies, which are
generally fewer if at all, as they age:
“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.”
Without any
pattern there were a handful more incidents, at least through mid-July.
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.
Hayden is a happy
guy and generally wakes up that way. There are some mornings when he is a
typical exhausted teenager and doesn’t want to get up, but for the most part if
he’s really moving like a sloth then something is wrong. Otherwise he is very
ready for his day to begin! (He may have my genes but that is one trait he did
not get from his mother, who strongly dislikes mornings.) He has a broad
spectrum of interests including working with tools, watching just about any car
guy show on the History channel, also pickers—whether famous TV personalities
or popular youtubers… he also likes doctor shows, loves listening to the oldies
(especially with his dad), is still a loyal fan of Grover even at fourteen and
a half years old, and generally prefers to play outside.
So what happened?
I think this was a perfect storm of everything that it took out of him to cope
with all of the transitions and changes… it was too much and it caught up with
him… and as luck would have it this was coinciding with puberty… and worse, the
medication he had been taking for anxiety is apparently one that people can
build a tolerance to. And in individuals with fragile x syndrome—or possibly
all patients, I am not sure as this was news to me—but if they do build a tolerance,
then instead of helping them it interferes with their ability to think things
through and thus can make the behaviors even worse. This is one of the millions
of reasons why trial-and-error to treat a spectrum disorder is just a very
trying process for all involved.
As a mom/ personal therapist/ nurse/ advocate/ and every other parental
role in between… I remain conscious of communicating expectations to Hayden… I’ve
also never been the type of parent to spew empty threats… and I constantly strive
to maintain consistency and predictability for him because I know it helps
him. There are people who feel such proactive measures are counterproductive.
I believe that as Hayden’s parents, and with our (often) opposite
personalities, together Dan and I are smart at choosing when to challenge
Hayden and push him out of his comfort zone. Even when Hayden has overturned
furniture or antagonized me, we believe in him. Because while his fragile x
gene will not go away, he is a learner and he will always continue to progress.
There may always
be people who are simply not receptive to understanding… people who are robotic
in their processes and procedures… putting code ahead of common sense or
blaming resources as an excuse for not doing what’s right. When in reality, poor
decisions are due to the fact that they do not know how to handle a situation. For
people in decision making roles not only is their pattern of reacting (instead
of interacting) not serving any good to other individuals or themselves, but they
have zero idea how to see differences as an opportunity.
When Hayden was
in elementary school, in addition to always presenting a positive student
profile about Hayden at the beginning of every school year, I also asked the
teachers to please always share with me. I want to know the good, the bad and
anything worse. If I do not know what has happened then I can not help fix it
(and goodness gracious I wish I had the courage to say this to the face of
everyone I know). Sometimes I think I have almost over-achieved with
communicating with people who work with Hayden, while I have failed to
appropriately communicate over the years with friends or even family. Some people
say humans are creatures of habit and I say we’re also creatures of assumption.
So let’s keep the lines of communication open—productive, potentially scary,
but an always necessary line of communication.
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.
If
that phone chain had not happened last year, if just those few people within
the NFXF and the FXCRC had not been there to help us, I can not even fathom
where we would be now. In addition to my family, and all of the incredible
people that have been a part of nurturing Hayden’s education—who far, far outmatch
the select few who tried to hinder it—I also want to thank all the people close
to us who continue to make sure Hayden is thought of and included. Some are
newer friends and some have known him since the day he was born. And especially
to anyone who has ever supported the NFXF over the years, this is only one
(very long) example of how you have helped them to continue their mission, to
be able to help families like ours. If I haven’t said it enough before, we
appreciate you.
