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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