program pivot

Probably about eight months ahead of Hayden graduating I was already visiting prospective programs for next steps. This is a bit atypical but I've talked about this before-- since he was aging out of the school system right around graduation, I didn't want the timing of his birthday to potentially cause a gap. For students like Hayden who have the option of staying in a school setting until age 21, some may stay for many months beyond their 21st birthday depending when they turn 21. If their birthday is in October for example, then in September when the new school year begins they're only 20. Which means (in NJ, again for example) they can continue to benefit from instruction, therapies, & other related services until June when that school year ends. However if during that time they find an appropriate program with an opening, then they can move on when they're ready without any gap whatsoever.
Hayden's (21st) birthday falling smack in the middle of the calendar year, & like I said coinciding with graduation, is not so fortunate in this context.

He's getting settled in his new routine now-- he joined this program about a month & a half ago. I successfully avoided any substantial gap! My only hesitation with the Day Hab we chose for Hayden was whether there were enough relatable peers for him. Typically people who align with Hayden socially are developmentally further(?) ahead, but if reversed then they're not necessarily socially compatible. He's a unique niche. His current program is looking to expand though, & with that it's likely there will be more participants closer to Hayden's age attending after they graduate from school.

There's another program we know of which in terms of skills & interests is right up Hayden's alley, but not a great setting for him five days a week. He needs some additional supports & structure. Then we learned they were in the process of opening a second location, & this one is in our county. And get this: the participants disassemble electronics for recycling. If your eyes opened wider when you read that, then you obviously know Hayden well! This has of course been one of his hobbies for many years. Not only because it involves using a screwdriver, but with Pop Z having a long history in the scrap metal industry this has been a great activity of interest. 

Fast forward to me asking our support coordinator if she could find out some more information, but I wasn't yet sure if we could create a hybrid schedule for Hayden. His individual budget from the state is what covers his day program & this means the budget would have to be split. For some programs, when a participant fills a spot they prefer they attend full time. Other programs have many participants who attend part time. 
Thankfully the second, newer program allowed Dan & I to tour it with the support coordinator so we could see if it might be a good fit. We loved it. Then we scheduled a trial for Hayden which went very well. But the luckiest part is that this additional program was definitely okay with him being there just one or two days a week. 

Here he is when he visited-- checking out the warehouse of stuff they get to disassemble, then touring the facility, & working on taking something apart!

Next thing I did was reach out to a few people in the administrative offices of his current program. First, I asked how he has been doing. Then I carefully explained we were hoping to revise Hayden's schedule, but I reiterated the many reasons their program continues to appeal to us. I offered perspective for this proposed change because the different setting would also provide an appropriate balance of skills, with additional socialization opportunities. I was nervous sending this communication because everything was sort of riding on whether or not they would agree. 

Well, here is part of the reply we received:

"Hayden has demonstrated significant engagement and enthusiasm. He is increasingly capable of communicating his personal preferences and advocating for his sensory needs, such as requesting access to a sensory room when environments become too loud or declining outdoor activities when temperatures are uncomfortably high. His participation in various community outings—including trips to a bowling alley, stores, local libraries, and a farm—highlights his growing ability to interact socially with peers and staff in diverse settings. Overall, Hayden maintains a positive attitude and shows increasing independence in managing his daily routines and personal belongings. Hayden demonstrated high levels of engagement and positive social behavior across various settings. He appears to respond well to structured routines and benefits significantly from staff modeling and verbal prompts, particularly during community excursions. His ability to express preferences and participate in group activities suggests steady progress toward his socialization and independence goals.

Notable observations include Hayden's successful adaptation to unexpected changes, such as navigating a canceled outing due to inclement weather and accessibility issues, and his ability to maintain engagement through preferred activities like computer use and music therapy. Staff observations noted that Hayden remains calm, cooperative, and responsive to support, frequently utilizing verbal and visual cues to navigate his daily routine effectively.

We completely understand the opportunity you are exploring for Hayden and are supportive of anything that can contribute to his growth, interests, and overall well-being. If you decide to register him for the other program on a part-time basis, please keep us informed of any changes to his schedule so we can plan and adjust his programming accordingly.

We are glad to hear that Hayden seems happy, and we look forward to continuing to support his progress!"

My eyes well up every time I re-read that. If that's not the best response I could have possibly hoped for, I don't know what is. We are so grateful. I thanked them for the feedback, offered a proposed schedule & tentative start date, & reiterated how appreciative we are of all the continued support to help Hayden grow & gain independence.  They expressed if there's anything in particular they can work on with Hayden that would complement his new program. Preaching to the choir as they emphasized working together to provide consistency & continue to help Hayden move forward. 

Before Hayden finished school, I believe it was at his last IEP & re-eval, the Principal offered a comforting perspective for me. Because I had mentioned some of these programs I toured left me feeling nothing short of sad. Hayden was moving on from a private school within a truly impressive facility. And as if reading my mind she sort of waved her hand around us & said, "You're coming from this. But you have to pay attention to the people who would be supporting Hayden. And you have to focus on what they do when they're there, as well as where they go with them." 

To that point, I will not soon forget something subtle which heavily reassured me his current primary program could be a great fit. It was my first visit & as I was speaking with the Day Hab Director in her office, suddenly the program Supervisor politely yet anxiously interrupted us. The Director apologized to me that she had to excuse herself for a moment. I was of course understanding & she stepped outside to take a phone call. I was not trying to listen but it's not as if her office is sound proof. I heard enough to piece together that it seemed one of their participants who had left for a daily community outing (I think), suddenly wanted to return to the program building. The Director asked the individual she was speaking with if they had a buddy, & then she told them that was great they were with that person. Then she reassured the individual that a second van was coming to pick them up & she explained approximately how much time that would take. She was calm & understanding. Then she said, "I am so proud of you for calling me." With that I thought I was going to cry because to me that was exactly the appropriate thing to say. Not trying in that moment to perhaps convince this individual of a different decision, which could potentially trigger a more difficult situation... not at all carrying a condescending or reprimanding tone... nothing to make this person (who was already uncomfortable) feel any kind of way other than simply supported. I was truly trying to hide my emotion when she returned to her office because I was so touched to witness that. 

I don't know if the significance of this whole scenario is coming through, but this has been a huge process & transition not only for Hayden but for us as a family. There would be way too much to explain just what it took to get to where we are. And when I say we are pivoting I mean zero suggestion that something isn't working, but rather a shift to maintain a smooth balance. 

And on that note, I will keep you posted. 
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middle finger

 It's been a minute since I blogged about what it's like when Hayden needs some sort of emergent medical care. There was an ankle incident I shared about fifteen years ago if anyone cares to revisit that memory, which was also during Fragile X Awareness Month.

Fragile X Awareness Month doesn't go away, neither does fragile x, so here's a dose of July awareneXs. 

Yesterday morning Hayden left his room after he woke up, which he typically doesn't do because he prefers to wait for one of us to get him or we end up needing to anyway, to help him wake up. He approached me still in PJs but of course with his baseball hat on, faux glasses on his face, & wallet in hand. He may have also had his stethoscope. He was on his way to the bathroom but went up to me to show me his finger (I don't recall what he said). His fingertip was red, visibly swollen, the cuticle line was green, & right below that his skin looked almost the same white as blood flow being cut off.

I'm going to fast-forward through some of the sequence of events that morning but somehow he got dressed & ate breakfast. However, I knew he could not attend program because that finger needed to be tended to. I will say that having a little emergency is enough to throw him off, let alone when dealing with said emergency also means we must stray from our usual schedule/ routine. That will make it worse. 

After approximately two & a half hours of me unsuccessfully trying to tend to his finger myself, on & off because of his tactile defensiveness, we finally managed to get him to follow through with leaving the house. Which we had also been trying to do-- just to get him to choose one or the other, either accept my help or let us take you somewhere to get help. At one point things escalated to Hayden beginning to grabbing & throwing whatever he could off of the kitchen table. Last time that happened was the February incident when I got a laptop to my eye, but thank goodness Hayden did not get heightened to that degree this time. Plus Dan was home, which helped prevent the situation from getting to that point. 

We opted for a local urgent care where they miraculously/ successfully were able to complete a TB skin test last month, that Hayden needed prior to starting his new program. Also this solved the issue of him not currently having a local Dr because his (newer to us) PCP who is definitely not nearby, currently manages his medication regimen. In the past, he had a fragile x specialist for the latter but the most recent one relocated to the other side of the country (& the one before that retired). 

So by the time of the urgent care visit, we were about 3 hours into this ordeal. The doctor there told us that it was an infection & it needed to be drained but they couldn't do that there (I think because they didn't have the staff & she knew from experience we need enough hands on deck to accomplish something like that with Hayden). She said our best bet was to go to an ER. The two closest options are similar in distance from where we were-- one maybe a couple or few minutes further-- but Dan opted for the slightly closer one mainly because we know from experience the wait time at the other one is typically not good. We had never been to the other one before but it's owned by the same company as the one we are familiar with. Just a side note, it was impressive not only that Hayden answered some of the nurse's questions at the urgent care but how he answered-- he communicated well. And not that I need a reminder, but when I re-read that ankle blog post from so long ago his speech progression was even more apparent. 

When Dan, Hayden, Grover, & I arrived at the ER it was not busy. Check-in was easy. The woman at the desk was very kind & seemed to understand Hayden's unique needs. She even gave Grover his own visitor badge. The wait to be called into the first room was relatively quick. The next woman was also very kind, asked the right questions, seemed receptive & accommodating. I believe there was also another nurse in that first room. The wait time in the room where Hayden was assigned an ER bed is where things really slowed. 

Start to finish took about 3 hours. The majority of the wait time was until someone came in the room to assist him. The rest of the wait time was mostly for the numbing agent to kick-in as well as the calming agents (plural) to also kick-in. This included being pinned down by about half a dozen adults (it's a blur) & one of the nurses giving him a needle to his thigh. 

He was able to walk (albeit unsteadily) when he was discharged. He slept the rest of the day & well into the evening until I finally got him to wake to shower & eat something. He went back to bed probably less than two hours after that. 

After-care includes soaking the finger at least a couple times a day, ointment application after, & dosing an oral antibiotic 3 times daily. Antibiotic for Hayden must be a tablet that is safe to crush or a capsule that can be opened. He will not eat a chewable, or drink a liquid, or certainly never swallow a pill. He needs a follow-up tomorrow to check that it's healing. Let's review said after-care: if we can convince Hayden to put his finger in warm water, he will not keep it there long enough for it to soak. Ointment application & re-bandaging with a little gauge will be hit or miss. Three times daily dosing of the oral med-- let alone for 5 days-- is going to take a mini-miracle. As it is I have to hide his crushed meds in his daily breakfast & the horse capsule antibiotics have a lot of powder in them. Nothing else that he takes in the morning is re-dosed during the day, but timing of other meals is less predictable because that always depends on how long since he last ate... vs it's such & such a specific time so he's ready to eat. Doesn't work that way in our fragile x world. 

Any problem that needs to be tended to, is only the beginning of the problem. An injury itself is just the preface. So for this particular awareneXs post I raise Hayden's infected middle finger to fragile x. 

Although... I do place my hand to my heart for the rare healthcare providers who bother to truly listen, have an appropriate sense of urgency, & are receptive to doing everything we can to safely assist Hayden together. Thank you. Thank you.

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stick a fork in me

 Hunger can be one of Hayden's behavior triggers. The new day program he just started is BYO lunch, as most similar programs are. This is a challenge for someone who prefers warm meals & such meals that fit into his sensory preference-- not just taste. A deli sandwich is hit or miss with him & there is no other regular-ish sandwich that he would entertain (such as PB&J). 

On Monday I did send him with a sandwich & he ate half. I don't think he touched his snacks. Yesterday I sent popcorn chicken that I put in the toaster oven that morning & while still hot they went right into a stainless steel container. He ate his BYO lunch that day. Tuesday night we discussed Wednesday lunch options & I talked him into taking meatballs with parmesan cheese on them. Fifteen minutes before we were leaving I heated them up, put them in a container to retain the heat, & right before I put the lid on I gave them a generous sprinkle of cheese. Looked very Hayden-approved in my opinion. After his hot lunch was packed I went to put the parmesan cheese back in the refrigerator & noticed literal mold in it. I nearly wanted to cry. I had no backup plan so in my haste I grabbed something very similar to what he had for lunch the day before & threw in the last cup of applesauce with his other snacks. I really needed today to be a good lunch day because I was picking him up early for an appointment-- easily 30 minutes in the opposite direction to get home.

After I dropped him off I stopped at the grocery store to get fresh parmesan, more meatballs for the freezer, replenish his applesauce, etc. My list was about two grocery bags worth. Got in the car & about half way home I realized I forgot to get the meatballs. Couldn't dwell on that because now we have to get dinner ready. I am usually proactive about this out of necessity-- (certainly not pride or anything--) so it only needs to be re-heated when we get home. Today, especially, knowing we would inevitably be in traffic coming from his appointment. That said I had the brilliant idea of putting our planned meal in the crock pot even though normally I would have made it on the stove. But a quick online search assured me it could be a one pot meal-- just said to be careful how much water & stir occasionally. About an hour after I put it in the pot-- meat topped with dumpling-like noodles-- I check on it to do just that. Give it a stir. Took the lid off & it was a gross mushy mess. The noodles were definitely not salvageable but I used tongs to get all the meat out & then transferred to a pan on the stove. Dirtied another pot to boil a fresh bag of noodles. Second attempt, including one dirty crock pot, a large stainless pan, & a pasta pot later, it came out just right. Sink was filled with plenty to clean but hey, dinner was cooked & cooling off so it could go in the refrigerator. 

Picked Hayden up early for the appointment & of course when he got in the car he told me he didn't eat his lunch because he didn't like it. I had a banana in the car for him (also something he didn't eat the two days prior), but luckily this time he did. This was going to have to hold him over after not having anything substantial since breakfast. Awesome. Not like the traffic wasn't going to add to his behavior if his discomfort from hunger didn't already set him off. 

Let's just fast-forward to getting home. His dinner plate was already in the microwave when I saw him in my peripheral going to the cabinet to grab a snack. I told him I was just about to put his food on the table & he said, "I know, I'm having dessert first." I can generally gauge when to pick & choose my battles & this one was not worth the fight. I truly believed once he started crunching on something else, that would sort of get him going so he would eat his food. I let it be. I put his plate down, he brought his snacks of choice over & started on that first. 

I was straightening up in the kitchen & by the time I was done, he was finished with his snacks. I was just about to ask him if his dinner plate was still warm when he pushed it away & said, "I can't eat this. I just had dessert." 

I'm done, too, Hayden. You know what... I am done. 

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Path

The little kid with light curly hair & the most genuine smile that would sparkle through his eyes like no other kid I know (unbiased of course), graduates for good next week. Days later he turns 21 on the 22nd. He's taller than his parents now & while you can still see some wave in his hair when it starts to get long enough, the warm shade of brown complements his dark yet bright eyes. Even though his smile alone is often more reserved than it used to be, it still adorns his handsome, now-maturing face with plenty of expression. 

I might describe him like a storybook character, but Hayden is a most significant part of our story.

At the completion of 8th grade Hayden was given a cap & gown as well as a yard sign but it was during the pandemic, so he was among many who did not have a commencement ceremony for us to attend. When he finished 12th grade we had a small celebration for him because the end of the school year coincides with his birthday anyway. But completing "high school" was less symbolic as it was known he would continue to attend for two more years. Qualifying students with IEPs (Individualized Education Plan)-- because not all students with IEPs would qualify-- can benefit from an 18 to 21 program (inappropriately named, because they could be near 22 depending on their birth date vs the school calendar). After 21 they transition to Adult Services, when their DDD budget (NJ Department of Developmental Disabilities) becomes available. So that's why when Hayden finished Grade 12 there was no pomp & circumstance at school because they officially graduate when they complete (what used to be known as) the Young Adult Program (it's been renamed Path 360 at his school). 

In the absence of an 8th Grade Graduation & no official 12th Grade Graduation, his Path 360 Commencement is emotionally a big deal for this mama! Hayden has been in a school setting since he aged out of Early Intervention at 3 years old, so this is a significant transition vs all the previous steps. And because of his date of birth, the fact that graduation is coinciding with his milestone 21st is a biggie.

This blog update is to announce that Hayden has been accepted into an ARC program to continue refining his daily independence skills, community interactions, & pre-vocational training. The ARC is a nationwide nonprofit leader in supporting people with disabilities as well as their families & the professionals who support them. Their mission includes promoting civil rights, supporting inclusion, community acceptance, & planning for their future. 

I technically began researching next steps a couple of years ago & started touring programs (the ones who would permit visits, which is most) in late 2025. The greatest challenge finding appropriate placement for Hayden is that he is not ready yet for vocational as he still needs some behavioral support. Thankfully his social skills have remained one of his greatest strengths but that said, I was finding that most of the programs checking the appropriate "support" boxes have a lot of participants who are otherwise quite developmentally different than Hayden, especially from a social aspect. Where he is graduating from, Path 360 is just one of at least half a dozen incredible programs under the "360" umbrella. While Hayden has benefited greatly from being a part of their community, at the same time because of his developmental & behavioral needs he hasn't been able to take advantage to the fullest extent their vocational & some of their other programs. 

This particular ARC program is similar in that way, where they have a comprehensive structure of their own services. This can include a wide range of support through different programs depending on level of independence, interests & needs such as day hab, residential, collegiate experience, vocational, clinic supports, & more. 

Hayden will accomplish what he does, when he is ready & not before. While it's of no help to Hayden & other individuals like him that certain supports are no longer mandated when turning 21, I am grateful to have found a program that is at least structured to guide us.  And they've been extremely receptive to our input & even participated in his Exit IEP to gain more insight into Hayden & his nuances

I hope as Hayden graduates from one Path he will only continue to enjoy the next. May this be an acronym for his Protection, Adoration, Tenacity, & Happiness-- for himself & those closest to him. Especially the latter... my wish is that he will always have people around him who make him happy. That he always feels fulfilled, in whatever capacity that means for him. Hayden Zem, we love you beyond measure & we know that you'll continue to do all that you can in your own time. 

Your own path at your own pace.

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