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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