Clouds, May 2010

Clouds, May 2010

Wednesday, April 22, 2020


Hayden's 4th Birthday
When Hayden turned four he had a Sesame Street themed birthday party. My parents gave him a plush of almost every character in the Sesame Street lineup, and little did we know that was the beginning of a legacy (of sorts). That summer we took him to Sesame Place where we met Bert and Ernie-- definitely two characters he was partial to at that time. I can't pinpoint exactly when Grover moved up the totem pole, but once he did all the other characters were second rate (even Super Grover-- Hayden never liked him as much as regular Grover). Eventually Hayden started calling Grover by the name "Noodles", nicknamed after that goofy guy on Sesame Street named Mr. Noodles. Hayden has many Grovers but there has only ever been one Noodles.

A young Hayden with some of the Sesame crew-- original Grover in the middle
That plush has gotten a lot of love! So much so, that he had various nose surgeries over the years because the stitching just wouldn't hold as the fabric became so worn. I stitched and restitched the original nose as many times as I could. Eventually one day I had to come up with a new nose entirely, and the only thing I could find in our house that was even close to the correct shade of pink was a Dunkin Donuts hat. It was an orange and pink fleece-material winter hat. I cut out a section of the rim where there was some extra pink material on the inside, stuffed it with a few cotton balls, gathered the bottom so it was like a tiny pink balloon, and reattached it. That lasted for a while but then that fell off, too. One of Hayden's former teachers had given him a Grover puppet which he never really played with for whatever reason, so we were very grateful when the puppet agreed to donate his nose to save Grover-Noodles' face. It was a bit disproportionate as the puppet's head was bigger than the plush's head, but luckily the transplant was otherwise successful. And Hayden was never offended by the subtle phallic-ness of the disproportionate size. 

The original nose on the left vs the fleece nose on the right
Grover-Noodles with his umpteenth (& last) nose. The final transplant made possible by Grover the puppet.

Grover-Noodles has had many notable adventures. From winters playing in the snow with Hayden to places he traveled on vacation with us. One year Noodles even swam in Lake Lenape and had to go in the washing machine (which unfortunately his mouth never quite recovered from, and he was left with a permanent Elvis lip). Mouth and nose aside, he also had lots of repairs including openings around the top of his legs, as well as cosmetic restoration to the pupils of his eyes... and other minor procedures over the years. Sometimes Hayden got very nervous and couldn't watch, and other times he supervised me to the point that I could barely handle the pressure.

Grover-Noodles has made an appearance in family photos, he has accompanied us to school (on particularly rough days), and other times if Hayden was sick he didn't leave his side. Grover-Noodles has been a constant in Hayden's life for more than a decade-- and unfortunately often smelled like it! I mean thank goodness for fabric refresher sprays, but sometimes it gets rough. And in recent months the poor guy has looked even worse than he has smelled. 

On the evening of Friday, April 10th I returned home after running an essential errand and Hayden told me (in so many words) that Grover was gone, or that he got rid of him. I followed Hayden to the kitchen and he showed me the inside of the garbage can. There was Noodles, nose-less, laying beside a plastic wrapper from wipes and a paper plate. I asked Hayden where his nose was and he calmly said, "It's down there." I kind of got a lump in my throat but I said (something to the effect of ), "Well, he lived his best life and I am so proud of you for letting him rest now. You made him so happy and he lived the life that any toy would want!" I started to ask him if he wanted to have a service or something but then I caught myself and changed the focus. 

Grover-Noodles, the last time any of us saw him, in the kitchen garbage
At some point the next day when it came up in conversation, Hayden said something about the garbage people taking Noodles away to fix him up. I immediately reiterated that Grover was at peace and happily resting after a really good life. We shared the news with Hayden's counselor via a video session the following week, and he praised Hayden for knowing when to part with something that was broken. I mean Grover-Noodles' final resting place was a little sudden as far as Dan and I felt, and as a matter of fact on that night that Hayden chucked him in the trash Dan hadn't even realized that Hayden actually put him in there until I got home.

Interestingly, Sesame Street released a special just recently to help young children feel a sense of normalcy during such an unprecedented and abnormal time. It's about a half hour long and features Elmo having virtual playdates with friends, and is just like the view that Hayden has of people who used to come to our home. We recorded it and he has watched this particular show almost every day since it aired, which was actually four days after Noodles was laid to rest-- although technically one day before the garbage men actually took him away.

I will tell you one thing-- Hayden deciding to let go of Grover-Noodles once and for all... right now, during this time... of all the times that he could have possibly done this... I damn near felt like I needed to rescue Noodles myself.

This will definitely be a profound memory for us during this pandemic. I wonder who he will turn to for comfort next?

Farewell, Noodles-- you were so very loved by our guy! 

A couple of other notable memories...

Years ago, introducing one of his cousins to Noodles
The last photo of them that was ever taken-- just before Passover, April 2020 during
a virtual story session with one of his therapists

Friday, April 17, 2020

Month One

Here's my stream of consciousness for Month One, in no particular order (except for the first one which is a most important reason for us to be grateful...)

1. Since this virus crisis began to affect everyone's daily lives, one of my cousins has been simultaneously faced with each of her children as well as her husband having been hospitalized, each on separate occasions, for life-saving surgeries which could not wait. I think that's plenty tough enough, but no, their hospitalizations were not Coronavirus-related. In the meantime she and my other cousin (her brother) were already trying to secure safe and appropriate housing for my aunt with Alzheimer's-- right when the seriousness of this global pandemic hit the fan. However, as of this week, I could not possibly be more grateful to share that at least everybody in her home is out of the hospital. Continued silent prayers for all are welcomed.

Now, onto other observations during the first month. But let me preface this by stating that none of what I am ranting about here is more important than surviving right now. I have generalized anxiety and writing is just one of my coping mechanisms, so if you're vulnerable to being insulted by some of my musings then don't read them. (I can be vulnerable, too-- I unfollow people or pages on facebook all the time.)

2. Compared to taking out a ponytail, removing a bra, changing into pajama pants, or resting my tired head on a slightly cool pillow, in my opinion the feeling of taking a mask off my face is better than all of those combined. Not a fan (but at the same time a fan). Side note, if you know anyone who is an essential worker please check in with them-- even if you barely know them or haven't spoken in forever, please see if they need anything that you can help with. Even when they're not at work, I can only imagine every hour of every day inevitably feels like a mask on their face.

3. I wish the general public understood that disposable gloves will not help protect you unless you change them constantly. On that note, learn how to properly remove said gloves from your hands, or they will really be a complete and total waste of protection.

4. I am done with online grocery shopping attempts. A week or two ago-- (who knows, really-- could have been a month or two ago) for the first time since this all started, I was able to reserve a time slot to pick up groceries that we ordered online. I had a full, online shopping cart for weeks-- damn near forgot what was in it. One day suddenly two time slots appeared so I clicked on the first one without even reading it, and the page took a very long time to process before finally failing. But somehow it gave me the option to re-continue with checkout. I swear this happened twice until finally it appeared to go through. Once I got the confirmation email I took a closer look and the message said the order would be ready for pickup the following morning. That's when I knew there was something wrong because after weeks of trying to get an available time slot, I could see they were already scheduling umpteen days ahead. I knew my groceries would not suddenly be available for pickup the following morning?! Well, very long story short it turns out the order did go through and it was available for pickup the following morning... which is ridiculously ironic... because I had just finally braved going to the store earlier that week. So once my online order finally went through, I was looking forward to the fact that these groceries would not be ready until a later time when we would actually need them.(Cue that damn Alanis Morissette song...)

5. Am I the only one who is curious what television will be like by winter? (Bear with me, I'm all over the place with this post)
At some point the networks will run out of any new show episodes since no one has been able to be on set to film anything. I'm also just wondering, assuming movie theaters will eventually reopen, how weird it will be when everything that was supposed to release during this time eventually is released... will all those movies be out in the theaters for waaay longer? Until new ones can be filmed? It's all just so odd. And much less important, are shareable buckets of movie theater popcorn a thing of the past?

6. I have been obsessed with this one specific type of paper towel since forever, and I miss it. Also does anyone know why my family goes through napkins like they grow on trees? (You know what I mean.)

7. Every week a bus from the Educational Services Commission, of the county where Hayden goes to school (he's out of district), delivers a packet of schoolwork to our home. Every week the teachers put in something extra special-- stickers, playing dough, crafts, one time a few things for Hayden to disassemble as he loves, and the last packet even arrived with a sweet treat as well as soil, seeds, and two mini pots to plant flowers. Amazing doesn't begin to describe all of the people who help orchestrate these weekly deliveries-- from the teachers to the bus drivers. Even beyond the teacher he has packets from all three therapists, as well as ADL and vocational classes. There has yet to be a single week that I am able to get him to complete a whole packet, but obviously I am still grateful every time they arrive.

8.a. Each week we also have individual virtual sessions with several of the people who work with him-- including PT, OT, his teacher, his therapist through Perform Care and also his counselor through state services. While mom over here has a love-hate with all the scheduling and having to go back and forth between so many different virtual meeting platforms as none of this is streamlined... it is more than anything a sense of reassurance being able to connect with them.
8.b. On another note, they don't always go well. Many of these sessions result in Hayden simply walking away, or much worse. Furthermore, to no fault of our fragile x-related struggles, we don't have a laptop with a functioning camera. So Hayden's attendance requires the only tablet (out of the three we have) which will even hold a connection. And you know conveniently it is his iPad, and therefore THE one that he is used to controlling (for lack of a better word). A webcam was ordered a while ago and will hopefully arrive soon. At least after that the behavior triggers will be more limited to factors such as glitches that could happen to anyone.

9. It is really really really difficult to fulfill the role of Hayden's teachers (plural), therapists (plural), and also adhering to IEP goals, while maintaining being the mom, chef, advocate, and everyone else I am anyway. It is really difficult. I am genuinely concerned about his regression (refer back to 8b). My desperation in wanting to help him learn (or at least not regress) during this time leaves me determined one moment and sad the next. One minute I'll think to myself, Okay, tomorrow will be different. We'll come up with a plan to restructure his virtual learning so he can attend better. And I will have a talk with him tonight, and reason with him. There must be a way we can persevere while validating every crazy and confusing thought and emotion he has right now. And the next minute, the poor guy. I feel awful. I should buy him a present. Oh! He would love that shirt. Oooh... look at that cool truck. 
(Am I the only one who has to make a conscious effort to track Target and Amazon purchases because I seriously can't keep them straight-- what I ordered, when it's arriving, and how much I spent and can not spend any more?)

10. Passover and Easter were just weird. I set the table really nice for each holiday, we had delicious meals for both, did the whole Zoom thing... but it was about as bittersweet as it gets. It still feels unfinished.

11. There is a local mom who is a hypnotherapist-- I know her because her daughter is the same grade year as Hayden, and he was still in district through (most of) fifth grade. Anyway, she does not know I am giving her a shout out on here but listening to some of her mini sessions has helped me fall asleep a number of times since this madness started. Her name is Amy Arvary and I suggest looking her up and following her.

12. Speaking of Shout Out, I am very lucky and grateful that I have two clients whose businesses fall under essential categories. Therefore I still have the privilege of managing their social media pages and I am as thankful for the distraction and the work, as I am the income.

13. For the employees they're currently able to hold onto, beyond blessed for everything that the company Dan works for is doing to help said employees. Yes there have been changes... no, nothing is guaranteed as time moves on... but for now we are as lucky as anyone that they are holding on. If you are in a position to do so, please support your local YMCA with any donation amount. Any.
The organization which Dan is a part of provides housing and social services to more than 300 individuals, families, and veterans through seven emergency, transitional, and supportive housing programs.

14. I have never been as thankful as I am right now to live out in the country in the mountains in the woods. And while I hate the damn hills around here, more so I am just glad that we can take Sammie on family walks. Everyone should be so lucky to be able to spend at least fifteen minutes outside, every day, without stressing about going outside-- so I do not take this for granted.  Even better if those fifteen minutes are spent exercising (such as walking)-- any physical activity may help strengthen your immune system. Even though I really can't stand those hills-- regardless what route we take, we have to walk up a minimum of two to get home--  I know we are fortunate that we do not live on or in a busy road or neighborhood. Or within a highly populated area in general, for that matter.

15. I've noticed trampolines are once again trending everywhere. Hayden has had his for so many years unfortunately he is totally unimpressed with it. I would rent it out by the hour if it was safe.

16. I have a love-hate towards Hello Fresh. The food is delicious, and I appreciate the sense of normalcy that fresh ingredients arrive every week, but it's a lot of freakin work. Both the prepping and the cooking (and the cleaning up after). Sometimes each day takes a lot out of me, and by dinnertime I am not really in the mood for cooking lessons. However, while it is more expensive than if you bought the groceries yourself, it is much more affordable than takeout. It's like DIY takeout. AND Hayden eats most of the recipes they send us, too, which is pretty fanfriggintastic. But I am also freaking out about spending right now so I wouldn't be surprised if I cancel it. Really soon. But not right now, because we have a box coming tomorrow.

17. Please wash your hands with soap and water before cooking, but do not use hand sanitizer before going anywhere near a stove, oven or grill. It is very flammable.

18. I think marriage vows ought to be revised to include in sickness, in health, and during quarantine. And now we know that quarantine does not mean that piles of mail or laundry will be dealt with in any more of a timely manner than if we were not living under house arrest with invisible ankle monitors.

Imma get a little more serious before I conclude this... and MAGA fans might want to skip to #20.

19. I am grateful every second of every day for the fact that our son does not have any underlying health conditions that may put him at greater risk for contracting this potentially deadly virus. However, other factors which may put him at greater risk for contracting this potentially deadly virus-- albeit not related to his physical health-- are the fact that he has intellectual impairment. A person who does not understand as much as someone else, will be more vulnerable than the rest of us.
We can all agree that the CDC guidelines on use of non-medical cloth face coverings, is to help protect others. My face mask helps protect you and your face mask helps protect me. That is a fact. We all know this virus can be fatal and we all understand that it's a serious challenge to figure out when someone has a disease but shows no signs of it.
Now imagine for a moment someone who does have signs but doesn't know how to tell you. Heaven forbid our son developed symptoms it is very unlikely that he would even be able to communicate to us, for example, if he was experiencing chest discomfort. Or if he woke up one day and couldn't smell or taste anything.
This blog is about our journey raising a son with fragile x syndrome but it is also about advocating for him. I started blogging nine years ago and to the best of my memory I only went on a political tangent twice (this being the second time). I have always voted and will always continue to vote based on the person, not their political party affiliation. I lean blue but I am mature enough to admit I do not always wholeheartedly agree with any one side versus another. That said, on April 4th, 2020 the entire world heard the President of the United States of America say, "the CDC is advising the use of non-medical cloth face covering. As an additional voluntary public health measure. So it's voluntary, you don't have to do it. But... uh... this is voluntary. I don't think I'm gonna be doing it. The masks... it's going to be really a voluntary don't have to do it, I'm choosing not to do it, but some people may and that's okay."
This was not locker room talk. This was spoken to Americans (and essentially heard around the world) in the middle of an unprecedented global crisis. Where in one of the most dangerous ways possible (because he is influential), Trump reinforced his belief that "if you're a celebrity you can do anything you want", and in this case, even make yourself exempt from participation in helping to protect others (my mask helps protect you, and your mask helps protect me). The President should never, ever have told us that this will "magically disappear". Sometimes the only factor of this presidency that restores my faith in humanity, is the fact that the majority of the people did not vote for him in 2016. Popularity is not how he got inside the oval office, and for almost four years this has made me feel better. At least it was just the Electoral College that put him there, and not the people.

20. Please do not make up your own rules and timelines as far as when you can see family or friends, just because you've had it up to here with social distancing. I see people all over social media simply giving themselves permission to spend time with loved ones because it's a holiday, or it's someone's birthday. (Do you think that COVID-19 cares and will leave you be?) And please, for the love of all that's holy, even if you are having a cake with candles for someone who lives with you in your own home-- no one should be blowing the candles out. Make your wish and then use a freakin' candle snuffer. Otherwise bacteria is literally spreading all over the whole damn cake that all of you are about to eat.

In conclusion (no number 21), I just want to say that I believe part of social responsibility is not just distancing but also disinfecting. Please do this if you have to go to the store. I will not even enter a supermarket with more than with myself, my sanitizer, and my payment. No purse, no reusable shopping bags... nothing extra. All necessary precautions are taken when I get home as well-- I give a quick spritz or wipe to anything I choose from the grocery shelf before putting it in the shopping cart, and then I clean each item before putting it away in my house. It's the right thing to do. And speaking of disinfecting packages, (including items that arrive via Fed Ex or UPS...)
You can still support your local restaurants. I would lean towards takeout or delivery of hot prepared meals because heat kills germs, but either way be careful and disinfect the exterior packaging with a wipe-- it won't seep into your food unless the food is unsanitarily-wrapped (I made that up) in tissue paper. And if you don't think you have anything appropriate to clean with, then look again... under the sink, in the broom closet, laundry room... I don't know. I know not every product out there is antibacterial, but I'd say if it's not safe to drink then it's cleaning something.

I am not sure, but I may have been lying about the first sentence in #4. I think I just re-stressed myself out. Stay safe everyone! xoxo

Oops! Ignore the hugs and kisses...
I'll be back.