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. 
--

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.

--

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. 

--

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.

--

in between smile lines

I ran outside to respond to sudden commotion, barefoot in my haste, and witnessed my son with special needs who is in every physical sense a large man-- but developmentally otherwise a very young child-- yelling and cursing profusely at an Amazon delivery driver. A woman. She stood behind the truck and said, very matter-of-fact, that this was the second time he has harassed her.

In the immediate I first cared about trying to prompt Hayden to go back inside the house, while awkwardly picking up the oversized, cumbersome 30lb box from the street to walk it up to our front door. There was also a small, light box loosely balanced on top. The driver took a picture of me when I leaned over to pick up the box. After I brought the packages inside she lingered, parked in the truck for several minutes in front of our home. I actually went back out wondering if maybe a neighbor was interacting with her but as I got to our front porch she was driving away. 

That day, Friday, she reported the incident to Amazon. I was first contacted by them the next day via email, in a (seemingly automated) message timestamped 3:50am. 

This particular Friday started out a very difficult behavior day and Hayden didn't make it to school. One of our neighbors who happened to be outside at the time of the delivery kindly tried to engage with Hayden by inviting him to come look at something "cool" on her phone. He would normally have been receptive to that but he was at the top of the bell curve at that point-- a metaphor many specialists use to refer to such a heightened state. So when they're already at the top of this so-called curve, any behavior intervention technique is highly unlikely to be successful. For everyone's sake we may still try to distract or redirect his attention, but usually the best thing to do is unrealistic... such as clearing the immediate environment until he is decompressed or sort of re-regulated. 

At first glance Hayden looks like a typical young man. Some amount of awkwardness may be apparent pretty quickly in addition to his speech sounding a little different. We have had our fair share of public incidents and there have been times I have been quick to apologize and offer, "he has special needs". But in this moment I did not address the driver. I did not want a back-&-forth and in the immediate I just wanted to get Hayden away and I wanted the driver to leave. We have all different delivery drivers and I do not know when the first time was that Hayden had an interaction with this particular driver. 

I sent a short reply to the initial email from Amazon stating that I would rather respond in writing, and asked if that would be the appropriate email address to use. The initial email said that I would be contacted via phone the next day, but because of the time stamp I am not sure if that meant Saturday or Sunday. Either way I never received a phone call. Instead there was a second email (timestamped after 9pm) the following day which, although the bottom portion was slightly different, again seemed automated. That is why I did not respond a second time. But then two more days after that, which is now four days removed from the day of the incident, a nearly identical email arrived and was timestamped after 8pm. I did send a brief reply to that last email to say that the interaction was with a person with special needs, who also has an intellectual disability. I will update my blog if or when there is a response to that. But I can share that we have had deliveries since then without incident and I am assuming it was not the same delivery driver. 

I don't know how many times I have shared stories on my blog involving a behavior incident which, short of putting my son in a florescent vest that says "special needs" I could not have made sure that anyone else had a visual cue to help explain context.

When Hayden was still very young I offered a mutual agreement with the school, if you will, that we share the good and the bad and the beautiful moments and the ugly ones too. Because either way we should all be on the same page-- whether to encourage Hayden, or to work together towards a solution to a current challenge. But the idea being that we are helping to set him up to be successful. 

I hate talking about these behavior incidents. Hayden still has two scabs on his forehead from a very fragile x day three weeks ago. But I think it's worse if I don't talk. I understand sometimes there's a fine line between awareness or drawing unnecessary, unwanted attention. 

In the larger picture I wholeheartedly believe that this may be his only proactive protection. 
I can imagine that woman, the delivery driver, must have been quite surprised and confused and concerned. I am sorry for this and also sorry for her first impressions of Hayden. Fragile x gets in his way here and there all of the time. And worse, the fragile x specialist who is primarily managing his current medication regimen, is moving to the other side of the country. There is a nurse practitioner who is somewhat familiar with his case, and they will ensure there are no gaps in his medications, but ultimately we are back to square one. There is nothing specifically indicated to treat fragile x syndrome so medication management includes ongoing trial and error to target some of the symptoms. Difficult and exhausting. 

I hope, emotionally, the driver is okay. No one deserves to be yelled at that way. It's as if there's no holding back because in the moment he can't stop those awful words from escaping. I am on the receiving end of it more often than anybody and I can't always just let it roll off my back. It can be extremely upsetting. But I promise-- on my life-- underneath all that Hayden has the most pure heart. It is the absolute worst when people don't get to see that. To think about Hayden's fragile x behaviors being on full display when I am no longer around one day to advocate for him, is a level of terrifying I would not wish on anyone. 

I am not looking for sympathy because this is our reality. And even if you think I am handling this as best as anyone could, I am not looking for a pat on the back either. I just want as much awareness as possible for everyone's mutual safety. 

Because we know Hayden can also deliver the biggest smiles, too. And I mean the biggest, most genuine because when he does... he doesn't hold back. 

--

how's H

Near the beginning of November, one day I was at the grocery store with Hayden & I actually had to call Dan for help. Hayden & I were there picking up just a few specific items, as it is not a good idea for me to tackle an average shopping list with him. There are triggers from a sensory standpoint, as well as potentially unpredictable wait times, & items that he may become fixated on & not able to move past-- such as thinking he needs something that he wants. This is kind of what had happened that day, after we found the items he knew that we went in for in the first place. 
He got very heightened & took control of the shopping cart & it was awful. And it's always worse when you have an audience. He ended up yelling at complete strangers & one of them marched right over to the Customer Service Desk & unleashed all holy hell on them about how they deserve to shop safely. A couple of managers approached us & I thought this is the beginning of the end & someone is going to end up getting arrested. I was nearly sick with fear & not knowing what to do next. Dan arrived & was able to safely escort Hayden out of the store & I do not know what on earth I would have done without him. 

Many years ago I heard a perspective how parenting an individual with a lifelong disability can be like a mourning process that comes & goes in waves. You mourn (for lack of a better word) the loss of expectations & dreams & plans & all the things that you imagined would be down the road. You learn to measure progress in inch-stones instead of milestones (I did not come up with that, other parents did, & it's quite accurate). Treatment plans of therapies & other supports, in conjunction with a medication regimen, may work for a certain number of years until it doesn't anymore. And for those who can relate to surviving through those pockets of time when something needs to be revamped, there are so many different levels to that struggle. 

Not only are medications trial & error, but in our case we are not even certain which symptoms we need to target the most. Is it the ADHD? The anxiety? The aggression? All three? Which medications are or aren't working? There's nothing specifically indicated to treat fragile x syndrome but truthfully whether you're targeting symptoms for someone who is nonverbal, or for someone who is verbal but doesn't have the necessary communication skills... it's a scary thing. Are they feeling side effects we can not see? And mind you, before we even get to this point, maybe the person can not swallow a pill. There's a limit to medications which can be crushed before safely administering. Throw in some sensory processing disorder, & what do you do, to hide the unpleasant texture & bitter flavor? 

So you struggle through & hopefully find a regimen that is stable. Then like I said it may work for a while until it doesn't anymore. Undoubtedly the worst part is how this must make Hayden feel, & unfortunately it can be a bit draining for caregivers as well. 

I recently heard a perspective about grief that was truly profound. 
Back in the fall the Christopher Reeve documentary was released & I saw an interview of his son Will Reeve speaking with Anderson Cooper. Raising an individual with special needs is obviously not the same as the Reeve family tragedies. However, Reeve talks about the great long journey of grief that began when his father passed & then the lowest moment in his life when this pain was multiplied upon losing his mother just over a year later. He spoke about the silent grief that he felt & even as a kid he said he became painfully aware of how grief is received by others. Anderson Cooper asked him if he grieved-- I think he meant how do you even begin to do that-- & immediately Reeve says no. He did not grieve at the time. He says he learned quickly that whenever he did not seem like he was grieving, people remarked how strong & adjusted & tough he was. And that the stronger & happier he seemed, the better he was received by the world around him. Why? Because this facade makes others feel comfortable & safe... because grief is weird, grief is scary, & grief is even "yucky" as he put it. 

I've learned it also takes practice to answer someone when they ask how Hayden is doing, & it takes discipline to control any emotion behind my reply. Even if it's someone who is genuinely asking how he is versus, "Hayden's good?"... even then... I may not be ready to talk about it in that moment. But if I am ready to share perspective I have to tailor my reply according to the time, the place, & who is asking. Another parent shared a similar perspective with me when Hayden was very young, as far as learning how to adjust your reply to others, & I think it's an important one. 

Will Reeve, during that interview, also remarked that grief is permanent. And the one thing that would be disruptive is if you ignored it & pretended the grief doesn't exist. So you must go to that dark place in order to bring light there. This is how he put it. Dan & I ended up watching the documentary on New Year's Eve actually-- Hayden had an impromptu sleepover at Grandma & Pop Z's so we had gone out to dinner & didn't have any plans after. Even before I watched the documentary, of course I recognize the stages of mourning with raising a son with special needs is so very different from the grief (horror, really) of being a Reeve kid & losing your parents. But writing allows me to speak from my dark place in order to bring some light there.

You opened this blog to a picture of a seasonal snack from Trader Joe's, of all things. Seemingly insignificant. But there was some light today & when fragile x awareness happens, I take opportunities to share perspective.

Behavioral challenges have been creeping around again recently. Part of November (post- the grocery store incident) & most of December, I thought we were finally turning a corner. So much so that in our next follow up, I was hoping to discuss scaling back on one or two of the meds likely contributing to an undesirable side effect.

Then this week became an unwanted test.
First of all, they've made a schedule adjustment at school in light of some of these recent challenges. Next, Hayden's routine was a little bit different this week due to Dan's work & we've had to adjust accordingly. Last but certainly not least, we have had road work on our street & in front of our home. It's driving both Hayden & Gracie nuts. We live in a quiet spot, tucked all the way up at the top of the neighborhood, situated shortly before the road ends. They've been arriving daily around 6:45AM, loud engines, bright headlights, construction vehicles moving about, a lot of workers, tools & equipment everywhere... & as soon as there's enough daylight, the seemingly endless jackhammering begins. By Tuesday, Hayden already had enough. We did make it outside & to the driveway on schedule, right around the time we'd need to leave, but it was downhill from there. Hayden got as far as half in with one leg hanging out of the car, & obviously I couldn't get him to close the door. Trucks had backed up, workers had paused, everyone was respectfully waiting to let us through. Except for the only neighbors on our street who we do not get along with, who unfortunately live right across the way. The husband stood on their front stoop in the bitter cold smoking a cigarette & watching the scene unfold. As he or the wife often do, if they hear commotion. After nearly two decades I promise they know what's up, they're not concerned. They are bullies. They are aware of how uncomfortable the extra eyes make us & Hayden feel. 
Long story short, I can summarize Tuesday by saying he never made it to school & we have property damage to show for it. 
Wednesday I did get him to school. Late, but we made it. He knew in advance that he would likely be seeing Grandma & Pop Z that afternoon so I think that's what finally got him out the door. But when I pulled out of the school after I safely dropped him off, my cheeks were wet as that grief consumed me once again. It's odd because I feel a fine line between grief & relief sometimes. When the dust settles, & I don't know when that storm is going to pick up again, for the moment it's as if I exhale my protective emotional armor & I guess I unravel a little bit.

Today, Thursday, was the day I was most worried about. I didn't have any exciting incentive to offer, such as seeing his grandparents. He knew he had a scheduled CBI trip with school (Community Based Instruction) & today's outing was to purchase items at a Trader Joe's. That could either be motivating or have the complete opposite affect-- depends if we're having a fragile x day or not. Randomly, I ended up stopping at a Trader Joe's as well & I almost always survey their current seasonal items. So when I saw these sweet, heart shape rice cracker bites I thought it would be a fun new thing that Hayden might enjoy. Imagine my surprise when he happily came to the car after school not only to tell me he went to Trader Joe's, but to show me that he bought me a pouch of the very same snack I had picked up for him. And a tub of animal crackers to bring to his grandparent's house on Saturday. Of course when we got home I looked at the change he gave me (two cents) & I said to him, "You gave me two pennies. Shouldn't there be three more dollars?" 

The grin across his face as he pulled his wallet out of his pocket told me everything I needed to know. 
I let him keep those singles. 
So if you want to know how H is right now, he's happy that he has a few extra bucks in his wallet. 
Mom is relieved that the unwelcome tests this week are almost over. And when I walk past something in my home that was broken or where something used to be that was destroyed, I hope the property damage never overshadows days like today that I was sure we would barely make it through. And it was almost uneventful. 
Those sweet, crispy heart snacks are pretty good too. And if you get to a Trader Joe's while they still have their seasonal Valentine stuff, the Xs & Os gummies (although not a texture that Hayden would try) are really worth it. Figures, the candy with the Xs. 
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I am a mom, hear me roar

I agree with cutting taxes for the middle class & lowering health care costs. 
I agree with ensuring that anyone earning less than $400k annually will not pay more in taxes. 
I agree with having plans in writing to make this a reality. 
I agree with increasing access to capital for small businesses. 
I agree with stopping big corporations from price gouging, especially by exploiting an emergency to rip off consumers.
I agree with making affordable healthcare a right & not a privilege. 
I agree with bringing down the cost of lifesaving prescription drugs for Medicare beneficiaries. 
I agree with protecting Social Security & Medicare for the long haul.
I agree with investing to help connect Americans to accessible, affordable Internet. 
I agree with creating good-paying jobs, including Union jobs, & jobs for those without college degrees.
I agree with building on American industries to help workers thrive. 
I agree with zero tolerance for unfair trade practices from China or any competitor who undermines American workers.
I agree with ending sub-minimum wages for tipped workers & people with disabilities. 
I agree with establishing paid family & medical leave. 
I agree with eliminating taxes on tips for service & hospitality workers. 
I agree with fighting to ensure parents can afford quality child care & preschool.
I agree with keeping a Department of Education.
I agree with strengthening education & fighting for more affordability. 
I agree with implementing policies to also create career pathways for non-college graduates.
I agree with expanding home care for senior citizens & people with disabilities.
I agree with passing legislation to ensure American's energy security & independence. 
I agree with funding to hire & train mental health professionals for our schools.
I agree with continuing to invest in funding law enforcement. 
I agree with training officers & people to support them. 
I agree with expanding proven gun violence prevention. 
I agree with working with our allies to ensure NATO is stronger.
I agree with protecting U.S. forces & interests from terrorist groups by whatever action necessary. 
I agree with understanding Israel's right to defend itself while also addressing the war in Gaza, ensuring hostage release, as well as dignity & security for the Palestinian people. 
I agree with working around the clock for a hostage & ceasefire deal. 
I agree with standing up to unfair economic practices. 
I agree with supporting service members, veterans, their families, caregivers & survivors. 

I agree with expansion of benefits & services for veterans, including legislation for mental health support.
I agree with fighting to end veteran homelessness. 
I agree with fundamental freedoms about one's own body. 

I agree with doctors & healthcare providers not having to fear jail time for caring for patients.
I agree with funding Offices of Civil Rights across the federal government. 
I agree with anti-discrimination protections. 
I agree with fighting to keep communities safe from gun violence. 

I agree with securing our borders & fixing our broken immigration system. 
I agree with comprehensive immigration system reform & stronger border security. 
I agree with tackling the opioid & fentanyl crisis. 
I agree with investing in removing illegal guns from the streets. 
I agree with passing common sense gun safety laws. 
I agree with expanding background checks. 

I agree with ensuring no one is above the law, including the President. 

I also agree with some things that are not specifically written out in anyone's campaign plan promises.
I agree with not spreading false Election fraud.

I agree with accepting voting results. 
I agree with not using scare tactics & fear mongering.
I agree with not placing blame to an entire group of people, or demeaning an entire culture based on a small percentage of people from a given country. 

I agree that certain offices should be held to a certain standard. 
I agree that people in the highest offices should stop rather than encourage riots aimed at overthrowing our government. 
I agree the media should not be called fake especially when covering unedited footage, & there is proof that words were not twisted or taken out of context. 
I agree that reporters should not be insulted, reasonable questions should be answered, & that the people deserve much more than the concept of a plan.
I agree is not okay to leave certain rights up to the individual states, when protections for anyone-- but especially women & children-- can & have been stripped away by poor-minded extremists who refuse to recognize actual human rights (or decency). Whether it be because of their own personal religious beliefs or lack of education or their hunger for power & control... 
I agree with leaders who respect people by how they communicate & in their actions. 

But most importantly, if none of your plans or promises address how you will help protect someone like Hayden then you will never have my vote or even my respect. 

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