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. 
--

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. 

--

different books

 

On this week's episode of normalizing differences, a piece of mail that arrived while we were in Maine was confirmation of H's first annual re-filing of his Guardianship. (Yes, papers need to be re-filed every year. It's an abbreviated process compared to the initial filing, but it is not a one-and-done thing.) We submit an annual report of well being, accompanied by a doctor's certification. The timing of our re-filing just happens to coincide with Back to School & because I know so many people with same-age young adults, my social media feed has been absolutely flooded with dorm tours, parents coping with leaving a piece of their heart in another state, or adapting to becoming empty nesters altogether.

I am adapting to another Chapter of Different, too, but in this story my young adult is not going off to college. I've thought about somewhat re-doing Hayden's room & allowing him that excitement of his own room tour, ahead of starting his own new chapter in the Young Adult Program at his school. I still may but as far as he's concerned, this would simply be in the context of replacing his comforter which I just recently noticed has a tear in it. And/ or his two dressers because a couple of drawer bottoms aren't holding up. (Knowing Hayden he would expect the same room refresh again, this time next year.)

On the heels of our annual Guardianship reporting we also have an upcoming assessment next week for Hayden's DDD eligibility. The DDD (Division of Developmental Disabilities) uses a standard NJ comprehensive assessment tool (that's the literal acronym for it, NJCAT) to help providers & support coordinators understand needed services. It is a couple hours long evaluation (say a little prayer for us next Thursday) to identify the need for support in three main areas: self-care, behavioral, & medical. The results also establish Hayden's tier, which will determine an annual budget for services.

Ahead of this assessment we also have another important upcoming appointment which was rescheduled from late July. If you saw my last blog post you are correct, this is the Fragile X Clinic follow-up that we were supposed to have about a month ago. The day we missed said appointment was one of three very fragile-x days that Hayden had within the span of about a week. 

To sprinkle on a little more uniqueness, ahead of our Maine trip I noticed that Hayden would run out of one of his meds while we're away-- unless I had the script refilled early. This has happened to us before, & the doctor called the insurance company to put in a vacation code for the script (or something like that). But he is still a newer patient with the current Clinic. When I called to explain the circumstance-- which by the way sounds so simple but the process was beyond-- ultimately a clinic coordinator told me the nurse practitioner rejected my request to put a refill through because this one med (for ADHD) is a controlled substance. I am well aware of this but (a) I wasn't reinventing the wheel here & more importantly (b) what did they expect me to do. (About a week later, during out rescheduled follow-up, I would learn that this situation was also a result of the Nurse Practitioner not yet "knowing" us, as newer patients of the Clinic.) 

As I was literally at the point of changing the start of our vacation over this whole thing, the pharmacy finally told me that I have done everything I need to do & they would take care of it on their end. To which I did not understand so I repeated (through my building anxiety) the issue of the timeline... to which the pharmacy manager said I don't need to take that tone with her (you know, the tone of a special needs mom who is fighting back tears through this high anxiety situation who knows she has done everything she can & should do & is being told there is no more for her to do so it's sounding like her son isn't going to get his medication). But it turns out this was the pharmacy manager's way of communicating that they will fill his script before the insurance authorization expires & then I can pick it up 2 or 3 days later (whatever it was exactly) right before we leave. Which if she had said that in the first place, instead of me having to figure that out on my own, perhaps I wouldn't have sounded like I was taking a tone. Which was never a tone to begin with, but rather me trying to speak without crying because I had just about had it. 

For future reference, Hayden's doctor has recommended (especially in terms of the ADHD medication) that lowering his doses leading up to a trip will help stretch out a prescription. I think this would depend on Hayden's behavior trend at a given time, but otherwise duly noted.

At this point I hope September is borderline boring. Because the end of July & August (so far) have delivered up plenty of things. 

One of my favorite quotes-- unfortunately I do not know who authored it-- is:
"On particularly rough days when I'm sure I can't possibly endure, I like to remind myself that my track record for getting through bad days so far is 100%, and that's pretty good."

So whatever stage you're at, let's raise our imaginary glasses together in recognition of the next Chapter... however different our books may be. 
 
to be continued...

endless X

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.)

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. 

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

hope springs back

Spring fever. Nowadays this is synonymous with behavioral changes or mood swings which coincide with the season. But historically-- you know, 200 to 300 years ago-- spring fever was also known as spring disease because of a common seasonal illness which was actually not allergy-related at all. Symptoms were mild to severe including fatigue & malaise, to bone pain & hemorrhaging of the scalp & gums. Who knew! I wonder if it had to do with poor hygiene & warmer weather meaning people were spending more time together, & therefore contagious diseases had more opportunity to spread? No idea. But now the term is somewhat downgraded & practically slang for simple restlessness. I only ever knew of spring fever in that context & I thought it had to do with a post-winter mindset of people no longer being cooped up. 

Until Hayden. Because he has way too many behavioral challenges almost like clockwork this time of year, yet he is not what I would consider cooped up during wintertime. Often times snow or rain or temperatures for that matter, will not stop him from dragging his bike out or playing in & around his shed. Sometimes, because of the weather, I am trying so hard to get him to come back inside that it turns into an argument. This is why his spring-fever-like symptoms never made sense to me-- he's not emerging after being cooped up! 

More research & reading taught me it's not just flowers blooming & baby animals coming out of hiding, or the Easter bunny & egg hunts, or families gathering for Elijah at the Seder table. Or maybe you're a glass half empty kind of person & you associate springtime with mud, bugs, pollen, brown grass, & bare trees that have lost their magical winter twinkle. Our surroundings are in limbo & I've learned that research shows especially for people with ADHD, or depression, or bipolar disorder, this time of year can trigger manic episodes or other heightened symptoms even more.  

As Hayden's mom I associate springtime with IEP season, also the prerequisite to the one season of the year when his typical daily schedule is abruptly & significantly reduced, & worst of all the season when his behaviors always increase. Personally, daylight savings does not make me feel like I fall back or spring forward, but rather quite the opposite... as if I am falling forward and springing backwards. March Madness, pun intended, would be more accurate.

While the duration of Hayden's behaviors is often less than in his younger years, the frequency really isn't. As far as the severity, that fluctuates. But one major difference versus his childhood is dealing with said behaviors in manhood. And it sucks. It's emotionally draining, & sometimes scary, & needless to say he is not just going to grow out of it-- like teething, or terrible twos, or puberty. 

When I started this post I actually had no idea that today is National Son's Day. This observance was started only about five years ago by a mom of sons, who apparently created this because there was already a Daughter's Day. Well, I started this year's National Son's Day with a conversation with one of the behaviorists at Hayden's school. He was sharing some challenges they've had as of late, & I shared some of this seasonal perspective with him... as well as offering whatever possible insight that I could, when said behaviors occur.

Most of you know there are select staff who have supported Hayden similarly in previous schools... the special few who see right through Hayden's behaviors & they know it's not him talking (or worse) & it's not him being destructive. It's that damn gene. 

The BCBA shared with me that when he walked Hayden to my car after school on Friday, Hayden said to him-- (something along the lines of--) I know you're just trying to help me. Upon hearing that both my heart & eyes seemed to swell but with a lump of pride in my throat & a cracked voice, I said that was very mature of Hayden. As always I made sure to express my gratitude in keeping the lines of communication open, & also for doing so in such a way that is less reporting & more sharing & brainstorming. Hayden sometimes takes a break by chilling out in his office for a little bit & before we got off the phone the behaviorist said, "I have to admit it's partly selfish. Hayden just makes my day."

From the glass-half-full perspective which I am less likely to recognize this time of year, it is people like this BCBA who give me hope in this world. And maybe even springtime. 

--

mrs. capela

Mourning someone once is a process in itself but mourning them twice is a different kind of heartbreak. The only thing bearable is if they're not aware of it. Let it be tougher on the rest of us, that is fine... because knowing they're comfortable does give us peace. I was talking to a childhood friend of mine and I said when my mother-in-law got to the point that she didn't know who any of us were anymore, still every now and then when there was a smile or a glimmer of engagement with us-- maybe she even knew someone's name-- I swear we could almost get lost in the moment. As if she only had temporary amnesia instead... that somehow she would magically get better.

So now I am writing to you because that's how I cope. Your health took a bad turn about a week ago after you fell. As Dana said as much as this hurts and we are devastated, you will be better off in heaven than living a life you can not remember. 

But here's what I remember. The first time Dan introduced me, you and Dad were cleaning out the Perry Street house. Infamous Perry Street I would soon learn, with the Capelas being one of five families who raised their kids together... different siblings among them are still friends to this day. Anyway it was evening and you were both elbow-deep in everything you were doing, but perfectly kind. Even though there wasn't much conversational exchange that night... we didn't have a meal together or anything... Dan and I were just stopping by. But eventually there were plenty of dinners, a Yankees game, and various specific family events I remember from very early on. 

We probably all remember my first Easter dinner-- but in my defense it's not that stuffed shells were new to me, it's just not my favorite cheese. That didn't stop Dad from asking me what the heck I was doing-- gutting those poor pasta shells. But while I was also of course the only one at the table not eating your cherished meatballs, for some reason Dan didn't say to heck with me. At least my future son would become arguably your favorite customer of all time. And you know stuffed shells and meatballs aside, years later Dan said since I'm short with brown hair, my name ends in an "a" and my middle initial is "M"... I blend anyway. I also remember my first Christmas with the Capelas. I was so excited to get a stocking-- I think it was filled with toiletries, candy, socks... those sorts of things. Whatever it was, I loved it. We bought you a sweater from the mall and the style was a little bit too fitted for your liking, but I learned to shop much better for your preferences. Over the years we would buy one another lots of purple things and for you, I new anything decorative with cows was always safe.

I remember your excitement for all of the milestones... engagement, wedding, baby, birthdays, etc. You were also both at our home together with my parents when Dan & I went to that first pediatric neurologist follow-up, after Hayden's surprise diagnosis. Every step of the way our memories are inclusive of you and Grandpa. You were both always present for school events, like music concerts or Halloween parades. I hear your voice all the time talking to Hayden, "My guy," you would say. Your grandkids were your world. Logan, Kaitlyn, and Hayden pictures everywhere-- and so much thought with the PA house to accommodate having the kids there. And then Abby came along and re-ignited that twinkle in your eye even more. (Thirteen years between the youngest and the oldest, yet somehow their birthdays are barely a month apart.) 

For most of Hayden's school-age years we would spend time together weekly. When Hayden was very little you would be at our home for him one day a week when he got off the bus, and we would usually get pizza for dinner from the same place every week. You always had the NJ12 local news on the television in the background. Maybe, possibly, complaining about the dog. Dad would say with a smile, "Angelina, relax! Relax like a big ball of wax!" He gave Sammie a treat every time you walked in the door and would sort of box you in with the ottomans after you got situated on the couch, to keep her away. Eventually Dana and Rob moved about fifteen minutes away and you would make the rounds to see all your grands! Once a week-- usually stop by our house and then go there. 

When Hayden was around middle-school age, it was sometime during those years that you became a bit more withdrawn and your visits were more routine than anything else. If you spoke you would re-tell the same childhood memories, typically stories about your cousins and about living in Newark. But eventually you weren't really engaging with us much at all. 

But what I can promise you, is that we will forever hold all the memories that you no longer could. 

When you had to be moved to memory care a few years ago and Dad was moving south with you, it was overwhelming from various perspectives. The least of which was going through each room and all the decades of memories they held-- many of which were first moved from Rockaway, and then Hackettstown. Piles of odds and ends were set aside for donation, or even the dumpster. But I wouldn't ignore all that and I would take a moment to go through them, each time we were at the house. Here and there just a small number of things would come home with us. I noticed how Dan started to recognize and appreciate reminders of you that I put to use or found a nice spot for. And then I remember Grandpa holding that woven blanket decorated with the 12 months-- a holiday or a seasonal design to represent each one. It was always draped on the sofa and folded to display the one end that says the family name just above the bottom fringe, near October, November, and December. Anyway, I remember that moment because he looked at me as he held it up to hand it to me, and he said, "you're The Capelas". Now the blanket is often draped on a sofa in our home, too. 

I hope where you are, in addition to regaining time with loved ones who went before you, that you are doing all the things that made you who you were. Whether it be finding all those sales-- from a department store to a yard sale. (I love how you sometimes picked up something purple for me... I still have one of those little purple glass bowls, I use it all the time.) Or maybe where you are, you can clip all the good coupons from a Sunday paper... make delicious food just like your mom did (so I am told)... definitely tell silly but witty jokes-- (I mean the way you and Dan would go back and forth to the point that we couldn't catch our breath, my parents still talk about that--)... and of course loving and watching over your family and grandkids. 

We are not just continuing on without you, because in truth we are all blessed to continue on because of you. I may share the name but you will forever be the Mrs. Capela. I know I hardly speak for myself when I say I will hear your voice and picture your smile often. Thank you for my beautiful family. And by the way sugar doesn't count anymore so please enjoy all the sweets your heart desires! 

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parent or guardian

This Fragile X Awareness Month post is brought to you by equal parts gratitude and grief.

We're in a new phase right now: Guardianship.

According to the law, Hayden is legally an adult now. So that means we have to apply for something called Guardianship in order for there to be certain safeguards in place. Parents can begin that process through a private attorney or through Arc.

The Arc of NJ supports children and adults with disabilities and where we live it's the Sussex County Arc, or SCARC. Guardianship should feel like a relief I suppose, but as a process it is not fun. It is not only lengthy including all the steps, and time consuming forms and evaluations... but on top of that it can be costly. More so if you need or choose to use a private attorney (roughly up to $4k or $5k). But I was still surprised at the many fees (and some hefty!) even if you file without one. It's up into the four digits either way. You also have to re-file every year-- while not at the same level of expense or time, Guardianship is still not a one-and-done process. It also needs to be established in order to maintain decision making with regards to healthcare, and to be able to apply (or re-apply) for other state services, and much more. But the problem is there's a window of time in between when you temporarily lose some of that access as soon as your child turns 18, because you can not proactively have the Guardianship already established. So at that point you're at the mercy of the state's timeline.

I've learned we are lucky that we are able to file through SCARC, but even more so as Sussex County residents (because they also offer Guardianship services for other counties with Arcs that do not). They have been beyond wonderful. I sometimes think about the slogan on the road signs when you cross over the line into the County, and it says "People and Nature Together"... and how that did not sound like something I would want. The first time I saw one of those signs I didn't even know what to think. I grew up in an upper middle class, suburban neighborhood about 25 miles from Manhattan. When Dan & I moved to this unfamiliar County shortly before Hayden was born, and then learned of our son's diagnosis when he was 17 months, there were needless to say a ton of concerns. Among them, was the fact that we now lived in a rural area. And not knowing what that would mean as far as services and support. And we made assumptions that perhaps a different County with more population, could mean more money, and therefore better resources. We were wrong. Instead of a smaller population of people per square mile translating to less local services, for the most part its meant a little less struggle to compete for providers and availability of said services. My mom recalls this coming up in conversation at one of the specialist appointments early on in our journey, and in response to our concern they said I wouldn't be so sure. And commented that it may work to our advantage.

The Guardianship process itself is a difficult pill to swallow, though... the whole paper trail... I hate the wording.... we are listed as plaintiffs in the manner of an alleged incapacitated person. Our son.

Establishing Guardianship is streamlined for everyone... even a person having been born with a medical diagnosis of fragile x syndrome, for which there is no cure. It's further absurd that persons with disabilities are also required to register with Selective Service, even if their disability would not qualify them for military service. Filing for Guardianship for some people, should automatically cancel out having to register in the Selective Service System.

For as much as Hayden doesn't understand, he also notices nearly everything. He has seen these big envelopes arrive in the mail, he's seen me filling out forms, and he has overheard me on the phone. I also had to try to explain to him why we were going to have a virtual conversation with someone we didn't know (evaluation by a SCARC-appointed psychologist as part of the process), And then I tried to explain why he was leaving school early one day for an appointment with someone else unfamiliar to us, as part of this thing I kept calling "Guardianship". I chose to say something along the lines of... we have to make sure the state knows that we're taking of you, because some people when they're your age can make other adult decisions. Your Guardianship is to make sure they know we're helping you with those decisions. It was not that exactly, but when he still seemed a little bit confused I said that his aunt did the same thing for his cousin a couple of years ago (my niece with Down syndrome).

We had a lot of hiccups with the Physician Certification portion which I don't have the energy to get into. However, if you are a parent who is going to be going through this in the near future, I will gladly explain and answer any questions I can. I am eternally grateful for the moms who did the same for me! At this point I am just hopeful this necessary evil will be completed soon. We will be in receipt of a hearing date and when the case is filed, a court appointed attorney will be assigned to represent Hayden.

This doesn't feel like a happy occasion to me, but I use this blog primarily for awareness so that's why I'm here! On that note, since Hayden's birthday is a week before Fragile X Awareness Month, we happen to be going through this Guardianship process during a lot of awareness being promoted. And World Fragile X Day is coming up on July 22nd! Be sure to post on social media and tell people why! You can wear green, or any other color in the NFXF logo. You can share informative social media posts from the National Fragile X Foundation's page or photos from FRAXA's page-- they coordinate with people in different cities to have landmarks illuminated in blue or teal for awareness on World Fragile X Day as well.

As in previous years, Hayden has his annual page to support the NFXF. Donations can even add up to a chance for Hayden to win some fragile x swag! Another way to participate in the awareness is to simply share his page through this link!

From grief to Guardianship to gratitude... this is certainly a different parenthood journey than we expected. Yet right on par with both the likeness and uniqueness of Hayden.

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