I have one more thing I want to share as we close out Fragile X Awareness Month. And thank you again to everyone who posted on July 22nd for World Fragile X Awareness Day! And especially to everyone who continues to raise awareness throughout the year.
Just in case I don't say it enough, the continued support is appreciated immeasurably.
So, here we are, July 2024. In recent months Hayden had a pretty good start to the Young Adult Program that I previously spoke about, which they started transitioning him to as he was finishing 12th grade. When I talked about his new job training (a different location than the previous school year), it was one of those happy successes that I was excited to share on social media-- including (which some may remember) that he was very happy to be paid in pizza.
Unfortunately, the following week, Hayden's fragile x got in the way on work training day & escalated to the point that a difficult decision had to be made to end that particular opportunity. The goal, or hope, is to revisit a different one in the fall. While I understand the perspective of the school having had such a long-standing relationship with this particular business, & giving their students opportunity which they certainly do not want to jeopardize... this was of course upsetting for obvious reasons. And furthermore as Hayden was getting to know his new schedule he would be hyper aware of something missing or being different.
Then the very next day, during Community Based Instruction (CBI), that damn gene got in his way again. He was just mentally stuck on something, & the fixation made him heightened & caused another difficult behavior in public. It's my understanding that start-to-finish the incident was about 45 minutes & required them to call the school for backup where two more staff were requested at the particular location where they were, to help de-escalate & get him safely back to school. By that time he had missed his lunch period so he ate lunch in someone's office when they got back (or wouldn't really eat). It ended up the next thing on his schedule was Culinary class anyway, where I was told he made a grilled cheese sandwich & was excited about that. But you see this is what happens... we live in a world of bell curves.
Individuals with fragile x syndrome, when they are ascending up that bell curve, there is little intervention that can be successful. Sometimes distraction techniques will work but there isn't any one thing that is going to work every single time. That x chromosome can seem endless sometimes but when they come back down the other side of that bell curve, that particular incident is done. Sometimes we just have to wait for that, while making sure that safety is a priority.
With these two incidents occurring on back-to-back days, I did not finish responding to one before the next happened. But my initial response following the incident at his work training, was to redistribute his Positive Student Profile which I last updated when he started 12th grade & remains relevant. (This positive profile is basically a brief guide about fragile x & specifically Hayden's learning style, as well as common triggers & possible solutions.)
With these two incidents occurring on back-to-back days, I did not finish responding to one before the next happened. But my initial response following the incident at his work training, was to redistribute his Positive Student Profile which I last updated when he started 12th grade & remains relevant. (This positive profile is basically a brief guide about fragile x & specifically Hayden's learning style, as well as common triggers & possible solutions.)
When the second incident occurred the next day I tried to dissect the situation & then responded to their email to offer some perspective about his anxiety. If you yourself or someone you know suffers from anxiety, you may understand it can be a bit like depression in the sense that it is often not immediately apparent. But it is within a person & it is something that they are not able to control. In Hayden's case I think sometimes when he feels so out of control, he tries to control anything that he can. And imagine you have an intellectual disability on top of that, so in that moment he was not able to communicate verbally. But instead, wouldn't move forward with the task at hand & this was his way of gaining some amount of control (vs the loud cursing & wall kicking from the day prior). Being that they were off-site & not in the school building, this was an added problem. Like I said that x chromosome can sure seem endless sometimes. But his heightened state will always finish when he's ready, just not before.
That Monday was Fragile X Awareness Day, so I had previously reached out about sending in little swag bags for the staff & peers in his class. Everything was so well received & they even took a group photo which I shared on the NFXF NJ Chapter page. It was a relief that we got through those tough days & it ended on such a positive note.
So I thought.
The behavior finale of that very fragile-x week he had was the next day, the day after World Fragile X Awareness Day.
When I arrived to pick Hayden up he came out of the building very heightened & immediately stood at the passenger window leaning in, yelling at me, spitting a little bit in the process, & refusing to get in the car. At one point he did open the door & started punching me in my arm which quickly turned to trying to trash my car-- by throwing anything & everything about-- whatever was within arms reach. When the staff was able to move him towards the building he then proceeded to move whatever else he could-- this included planters & a sort of outdoor storage box that they use for deliveries. Pretty quickly he turned his attention to the landscaping & then they had him surrounded with blue gym mats-- to help contain his wrath I suppose & for mutual safety. This was all unraveling out in front of the school, during pickup time, for all to see.
At this point Hayden was on (& pretty much covered in) the ground, tearing out plants & flowers, & then he uprooted a small tree. By himself of course, & needless to say with his bare hands. An entire small tree. There was no landscaping left in that immediate area to the left of the school entrance. It was thrown about along part of the grass & walkway. looking similar to the aftermath of a storm. Enough time had passed that I missed my appointment-- I had arrived a few minutes early to get home in time for a virtual appointment. We were supposed to have a follow-up with the Fragile X Clinic that afternoon.
Can't make this stuff up if I tried.
Eventually when Hayden was calm enough I handed one of the nurses the spare bag I keep in my car & they brought him back inside to change his clothing. I have to say we did see glimpses of Hayden in the middle of all this, while that damn x was rearing its nasty head beyond his control-- he may not be able to suppress it, but you can actually witness moments when he works around it. I mean at one point when they were bargaining with him to get him inside to change, he looked up & smiled in agreement-- through his dirt-covered face, hat, & everything else. It made me think of the grilled cheese sandwich in culinary following that CBI incident. These are some of the moments that pain my heart so much it feels like it could break. I absolutely hate what that fragile x gene does to him.
Anyway, Dan ended up abruptly leaving a meeting so he could leave work to meet me nearby & follow us home. The original plan was for him to meet me at the school because I didn't feel safe traveling with Hayden, but he seemed calm enough for me to start driving & we decided not to add a transition.
The behavior finale of that very fragile-x week he had was the next day, the day after World Fragile X Awareness Day.
When I arrived to pick Hayden up he came out of the building very heightened & immediately stood at the passenger window leaning in, yelling at me, spitting a little bit in the process, & refusing to get in the car. At one point he did open the door & started punching me in my arm which quickly turned to trying to trash my car-- by throwing anything & everything about-- whatever was within arms reach. When the staff was able to move him towards the building he then proceeded to move whatever else he could-- this included planters & a sort of outdoor storage box that they use for deliveries. Pretty quickly he turned his attention to the landscaping & then they had him surrounded with blue gym mats-- to help contain his wrath I suppose & for mutual safety. This was all unraveling out in front of the school, during pickup time, for all to see.
At this point Hayden was on (& pretty much covered in) the ground, tearing out plants & flowers, & then he uprooted a small tree. By himself of course, & needless to say with his bare hands. An entire small tree. There was no landscaping left in that immediate area to the left of the school entrance. It was thrown about along part of the grass & walkway. looking similar to the aftermath of a storm. Enough time had passed that I missed my appointment-- I had arrived a few minutes early to get home in time for a virtual appointment. We were supposed to have a follow-up with the Fragile X Clinic that afternoon.
Can't make this stuff up if I tried.
Eventually when Hayden was calm enough I handed one of the nurses the spare bag I keep in my car & they brought him back inside to change his clothing. I have to say we did see glimpses of Hayden in the middle of all this, while that damn x was rearing its nasty head beyond his control-- he may not be able to suppress it, but you can actually witness moments when he works around it. I mean at one point when they were bargaining with him to get him inside to change, he looked up & smiled in agreement-- through his dirt-covered face, hat, & everything else. It made me think of the grilled cheese sandwich in culinary following that CBI incident. These are some of the moments that pain my heart so much it feels like it could break. I absolutely hate what that fragile x gene does to him.
Anyway, Dan ended up abruptly leaving a meeting so he could leave work to meet me nearby & follow us home. The original plan was for him to meet me at the school because I didn't feel safe traveling with Hayden, but he seemed calm enough for me to start driving & we decided not to add a transition.
Last month I shared a memory on Facebook that is very heartwarming to me, from when Hayden finished elementary school. At the time that I shared it, the local Seniors were finishing their last week of high school classes-- the graduating Class of 2024, which is technically Hayden's graduation year. Even though, as I've explained, school for him will continue with a Young Adult Program until age 21. This memory I shared was one of-- (not the only one, but one of--) the last positive memories while he was still a student in-district. I explained that suddenly there were new hires in the Administration & although these people are no longer part of our local school district (& have been gone for years), at the time this change was very negative. Then I added in my post that even though Hayden landed on both feet in a wonderful place, between the abrupt change all those years ago & more unexpected changes that we've been faced with since then... I wouldn't wish this journey on someone else. Doesn't change the fact that we feel beyond blessed for the teacher he had at his last school, as well as the teacher he had the past couple of years in his current school... & certainly doesn't change how grateful we remain for the experience Hayden had through the end of elementary school. I was just pointing out that this one memory-- from nearly eight years ago-- was one of the last great memories when he was in district.
People we've known since way back when added some very heartwarming comments-- people who were arguably as strong advocates for Hayden as us. Then, suddenly, someone had the nerve to send me a nasty message on Facebook after they saw that post, to actually tell me how insulted they were. I do not have an explanation for this, but after I picked my jaw up off the floor I responded by saying, "I beg your pardon but you were not responsible for what happened." But that didn't stop them. They even added that despite me, they will always have love for my son (?) & I need to get over myself. At this point I ended the conversation by wishing them well-- with whatever they were going through, which clearly has nothing to do with me-- & I also said, "Your words actually make so little sense I'm borderline concerned your account was hacked." There was no additional reply after that so I unfriended them.
I will not get over myself. For the rest of my son's life there will be people whose job it is to be responsible for him. Let that sink in & then try to tell me I should get over myself. Hayden is not my job, he is my life. Being an advocate for Hayden is a combination of never-ending support & gratitude for anyone who does right by him-- I've always said there's a reason that we hold those people so dear, & are forever grateful for those who have remained a part of our life. But another part of being an advocate is of making sure that other people do not do wrong by him or if they do, we get to work & we use our resources & our knowledge to right that wrong. I know that x chromosome seems endless & very strong sometimes but all the more reason why I need to help Hayden navigate through it.
Should anyone ever be insulted by what I share, then please don't read what I share. I am endlessly & unapologetically going to continue doing what I do.
Thank you from the bottom of our hearts for joining us for another month of awareness! I remain confident these efforts will guide the community to acceptance. xo
People we've known since way back when added some very heartwarming comments-- people who were arguably as strong advocates for Hayden as us. Then, suddenly, someone had the nerve to send me a nasty message on Facebook after they saw that post, to actually tell me how insulted they were. I do not have an explanation for this, but after I picked my jaw up off the floor I responded by saying, "I beg your pardon but you were not responsible for what happened." But that didn't stop them. They even added that despite me, they will always have love for my son (?) & I need to get over myself. At this point I ended the conversation by wishing them well-- with whatever they were going through, which clearly has nothing to do with me-- & I also said, "Your words actually make so little sense I'm borderline concerned your account was hacked." There was no additional reply after that so I unfriended them.
I will not get over myself. For the rest of my son's life there will be people whose job it is to be responsible for him. Let that sink in & then try to tell me I should get over myself. Hayden is not my job, he is my life. Being an advocate for Hayden is a combination of never-ending support & gratitude for anyone who does right by him-- I've always said there's a reason that we hold those people so dear, & are forever grateful for those who have remained a part of our life. But another part of being an advocate is of making sure that other people do not do wrong by him or if they do, we get to work & we use our resources & our knowledge to right that wrong. I know that x chromosome seems endless & very strong sometimes but all the more reason why I need to help Hayden navigate through it.
Should anyone ever be insulted by what I share, then please don't read what I share. I am endlessly & unapologetically going to continue doing what I do.
Thank you from the bottom of our hearts for joining us for another month of awareness! I remain confident these efforts will guide the community to acceptance. xo
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