an ode to infrastructure

Infrastructure: The system of public works of a country, state or region

As I start preparing (and worrying) about next week’s holiday: the supermarket was out of canned pumpkin I need for pie; how will V survive his first long car ride in two years? ; best of all B will be home for the first time since April! – I am otherwise fixated on politics and the two major bills that can create so much positive change.

House Democrats passed Biden’s sweeping social spending and climate change bill after months of feuding, a huge victory. But it’s still questionable if the $1.9 trillion measure can survive the Senate. Meanwhile The Infrastructure bill finally was signed into law with marginal bipartisan support, and I feel heartened by this one small yet huge victory in a time of dysfunction and divisiveness. I also am horrified that the 13 Republicans who supported it are receiving death threats. For infrastructure!

I’ve been a fan of infrastructure for half my life. When I worked for the Manhattan Borough President I had the thrill of being the arts liaison, with the most spectacular perks imaginable, getting to attend theatre opening nights, museum galas, ballets and operas to keep my calendar filled with fabulous events for four years. I also was charged with being the office’s infrastructure expert, not by choice. I was one of the last people hired and so was given this assignment that no one else wanted. Who could imagine anything more dull and unsexy, the polar opposite of all the exciting arts programming I had access to?

But I found over time that while the budget aspect was tedious, the actual details and duties of the borough’s infrastructure were in their own way fascinating, and definitely essential: roads and parks and waterworks and transportation and everything that made the city tick, the very bones of the place. I worked with architects and engineers and construction managers and a range of officials (mostly men back then, but hopefully things have changed a bit in the past 30 years) on projects that affected millions of residents. Then like now our infrastructure was being ignored and so many of the public works were in disrepair.

Which received more public attention, renovating a museum or upgrading a library, or doing something about a decrepit old bridge? And yet the majority of complaints we received were about potholes and traffic and trash pick up and subway problems. People didn’t know or think of it in this cumulative way, that there were whole systems of operation that needed upkeep. I don’t remember anyone ever using the word “infrastructure”, but when it came down to it that is what concerned people the most.

Not much has changed in that regard. It’s still what people complain about to their elected officials. Which makes it a mystery that so many didn’t vote in favor of this legislation. And while it’s been whittled down to 1.2 trillion dollars, that’s still of course a huge pot of money, about the amount spent developing the Interstate Highway System. And the bill has lots of great stuff that most Americans feel is worthwhile, like improvements to public transportation and expanded broadband accessibility in rural areas and reducing lead contamination in water pipes.

Most Republicans voted against the bill even though most of their constituents support it, and those same elected officials now are returning to their home districts to expound upon all the programs that will help local people. “I didn’t support this but I take full credit,” is the unspoken subtext. 

On the surface it seems like something safe to discuss at Thanksgiving for those who share that holiday with relatives with opposing political views (I’m fortunate in not having that problem with my family). Yet it’s still highly contentious, with complaints from Republicans about this being “a Communist takeover of America.” This should be the least controversial topic imaginable and yet it’s brought out the ugliest of divisiveness.

It may not be at the top of the list of what we give thanks for yet I would definitely put it on that list. Something positive and useful was actually passed by our government and will help us all live safer, more connected lives.  Try to remember that when you’re stuck in traffic next week going over the river and through the woods or whatever route you take to get to your destination.  Let’s hear it for infrastructure, for something we all need whether we realize it or not.  

Aging Gratefully

I just got my hair cut really short to get rid of the last of the colored part up top. Like many women, I recently stopped coloring my hair but it was less about the pandemic and more to try to eliminate the dry itchy scalp I have from years of harsh products. I have no political statement or cultural commentary to make, it simply was a practical matter. I have been lucky to have T as my colorist – I bought whatever was on sale at CVS and he carefully applied it; it was always pretty easy given that my hair was never long. I liked coloring my hair: it provided me with a bit of a creative outlet; I never had the nerve to go green or purple but I often had a nice reddish tint or golden highlights, a small window of self-expression to offset the t-shirts and sweatpants, the generally frumpy look I’ve adopted over the past several years.

So there’s no judgement at all, no sense that one way is better than the other.  I’m still getting used to looking older.  I don’t have some great sense of relief, I certainly don’t feel better than those who color, it simply is what it is. And I thought I’d like to do it while i’m still more pepper than salt and let the grays keep coming. 

Getting older sure beats the alternative. Ruby took the Rainbow Bridge on Wednesday. On Thursday T did a final sweep and mop of the floor and threw out the rest of her kibble. I’ll donate cans of food if the animal shelter will take them, as well as the unopened bottle of doggie Advil from Chewy (which they refunded since they arrived on the day she was put to sleep).Taking care of the physical details of her end of life is far simpler than the emotional part, the enormous sense of loss and sadness that comes with losing a loved one. 

This morning I woke up and had my coffee sitting on the sofa staring at the piano that never gets played but that was the spot where her beds were (she had two at the end, just to give her some variety since she spent most of the day sleeping). Then I go to the mirror and stare at the new look of grey and brown and the ongoing appearance of creases and wrinkles that get more pronounced with each year. I don’t stay for too long because frankly I’ve stopped looking in the mirror much as I’ve aged. I try to accept that this is part of life. It helps to think of my mother, my aunts and great aunts, my grandmother – to remember all the beautiful older women in my life.  Eventually it happens to all of us.  Aging gracefully can be a challenge: things stop working, slow down, like Ruby we can struggle just to get up and move about. Aging gratefully is a bit easier: I walk away from the mirror and the piano, I sit and close my eyes and breathe in and out, in and out, equal parts grief and gratitude, trying to focus on what remains, to simply be happy for so many great memories and to be alive to savor them. 

Giving Thanks and Saying Goodbye

November is the month for giving thanks and we’ve started early this year. Flooded with appreciation for the 12 wonderful years we’ve had with Ruby.

We have unofficially entered the hospice stage. T made the call to the vet to ask about putting her to sleep. Although she might be around for a few more weeks, it is imminent. She just keeps getting worse: her legs are no longer able to hold her up and her heart races each time she collapses and struggles to raise herself up again. She’s incontinent. She sleeps most of the day. This morning she knocked over the plate with the medicine mashed into her food, then as I was picking it up she came over and sat in it. I clean up the mess after she’s finally able to lift herself up and speak to her gently, that’s okay girl.

We do not avoid the details, discussing the where, who and when. Our animal hospital recommends a service where a vet comes to the house, Lap of Love, to administer the final medication. Yet we really would like to use our vet, whom we’ve seen since a few weeks after we adopted Ruby, but only one person can be in the room with her. It’s okay I finally tell T, I was with both of the cats, you can be the one to hold her, I’ll say goodbye at home.

We tell her we love her, we thank her for being the best ever family dog, T gets on the ground and pets her and talks sweetly to her.  We are emotionally ready.

Yet I struggle to resolve if it is actually time yet.  You’ll know, people say. But it’s not as obvious as it was with the cats, with their failing organs. Ruby’s vitals still work but she can barely function, she has a bad day and we decide it is time, only to have a better day and she gets a reprieve. Is she still able to savor this world? In moments, yes, still going out for walks and sniffing- up the street and back, only a few minutes but still it’s something.  She eats up her food, comes over for pets – enjoys life in the way she always has, albeit in a more circumscribed way.

Does that enjoyment of life outweigh the struggles of this last prolonged chapter? T carrying her out the door, I taking her out for the painfully slow walks, both of us picking up and mopping up after each accident – our floor has never been more disastrous, or more clean in the aftermath.   Most of all watching her struggle to get up.

Where is she on the continuum?  These are hard things to measure.  Still our loving and beloved family dog; yet even at her best she is a shadow of her former self.

She is our Thanksgiving dog. We adopted her right before the holiday 12 years ago. V was 8 and B had just turned 11. B reminds me of the timing, how we took her down to my brother’s house where we celebrate Thanksgiving; I believe she was relatively well-behaved for a newcomer. Then right before we left to go back home we gave some turkey to poor sweet Ruby in the back of the car, which she promptly threw up all over the back seat once we were on the road. On the bright side, every year Thanksgiving is a happy reminder of the anniversary of when she became our forever dog.

The gift of the hospice stage, in my limited experience (tending to a friend; visiting several relatives) is a heightened awareness and appreciation for everything in this life, where gratitude is positively cellular and granular, not just a notion in our heads.  It goes both ways: the thankfulness of the dying and of those left behind on this earth to process our grief, 

Lately I’ve been most comforted by Walt Whitman: “All goes onward and outward, nothing collapses./And to die is different from what any one supposed, and luckier.” We’ll never know if he was right but we can always hope. And so with great thanks and humility we enter the final stage.

Late Autumn

Changing colors on the trees, crisp air and apples, cool weather perfect for walks. What’s not to love about this time of year? And yet at October’s end I always look with some dread towards November, when we switch the clock back and it’s dark earlier. Although it does have two of my favorite holidays, Election Day and Thanksgiving, I’m not a big fan of November, given how it segues from brisk to brrr. So as much as I enjoy fall it gets harder for me to stay in the moment as it progresses, to look with delight at the turning leaves and not immediately go into a lament about the imminent onset of winter.

It’s also a challenge not to worry so much about the difficulties V has as the seasons change: his sensory issues and executive functioning skills are put to the test as the temperature drops. He’s fine when it’s moderate out, wearing unzipped sweatshirts that he keeps on all day; even if it warms up in the afternoon it’s not that big of a problem. But as it gets colder the real issues begin because once he puts something on he won’t take it off. So because a heavy layer would stay on all day, we tend to keep him in hoodies that won’t be too warm in the classroom yet can withstand the brisk air. This year he is refusing all warmer pullover sweatshirts, even his old standbys like the XXL hoodie we call Big Grey that he has lived in the past two years during in-between weather. Once true cold hits it gets even worse, as heavy jackets either won’t go on or are difficult to get off once he’s inside.

Most of us have some sort of sensory issues, although we likely don’t call it by that name. Take clothes for example. I don’t like wearing turtlenecks because they feel too restrictive. but I love wearing scarves around my neck. People have textures they prefer and those they avoid. We don’t always have explanations for why, we just know how we like to feel. Throughout the pandemic lots of people have rediscovered the ease and comfort of sweatpants or flannels, the category I call pajamas you can wear in public. It’s hard to go back to jeans and button down shirts after the forgiving nature afforded drawstrings and soft cotton. I have relegated to the attic most of what I used to wear this time of year, like corduroy pants and tailored sweaters, in favor of loose shirts, hoodies, and yoga pants. I don’t know if I’ll ever go back.

Many people as well struggle with executive functioning, which is basically the brain’s self management system. Executive functions are cognitive processes needed to control behavior. They enable us to plan, focus attention, remember instructions and juggle multiple tasks successfully.  V’s poor executive functioning symptoms include impulsiveness, trouble completing multi-task instructions, and problems successfully completing activities of daily living as simple as bathing and dressing.  It’s why after so many years he still will often dress in the wrong order when not closely supervised, putting on underwear over his sweatpants or occasionally putting on his sweatshirt without a shirt on underneath.  (We need to then find a shirt large enough to put on top.) He also will put on several layers of clothes or two or three pairs of socks when he finds them. This is why we need to keep extra clothes out of view and lament the times we miss something and he ends up with a ridiculous looking outfit. T is much thicker skinned than I, and doesn’t have a problem going out with V when he is dressed out of sequence or in extra layers while I have a harder time with it (especially the underwear on the outside look : ).  

This is all part of the reason I’d like to move to a different climate. Much as I appreciate the beauty of snow I’m not a big fan of winter, of the extra hours inside, of the added chaos in our home. I could easily be a snowbird and fly the coop from December to March. I’m hardly alone in that desire. I just have some added reasons why winter is so challenging. And that makes late autumn that much harder. Still, I look up at the trees during our daily walks and relish the first hints of yellow and burnt orange, the occasional bright reds. I take in all the pumpkins and mums and Halloween decorations that are rampant in my neighborhood. I appreciate the days when being unzipped is still okay, and hope that we’ll find a way to stay warm and comfortable when the time comes.

giving and getting

I listen to public radio a lot; it’s an engaging companion when I’m doing household tasks that need to get done. WNYC, my local station, just finished their annual pledge drive. I donate a modest sum for all that good listening. Yet I find the constant asking for money interrupting my favorite programs so annoying, even as I realize it’s essential to get needed funds to keep operating.

I often feel like that pledge drive: constantly asking for assistance to keep on going. Seeking help for V, asking for support for the programs he uses, being a taker far more than a giver. 

I thought of this during T’s time away visiting B, in which my sister and brother-in-law came down to help for the weekend, a kind and generous act. It was so wonderful to have them here to help alleviate the isolation and exhaustion of caregiving.  Yet I get frustrated that I am so often in the position of needing, of taking people up on their offers to help, with no opportunity to reciprocate.

We ask for support for organizations that help V. I do research and make calls seeking respite and home therapy.  As CEO of V Enterprises, it is a one sided equation of relying on the kindness of strangers, friends and family, of always being in need. I don’t like being in this position.

If our home life was different, if I didn’t have so many responsibilities that take up time and money and energy, I would do more to help others. I would have made a great rich person. I’d be a gracious host, I’d donate much of my money – the point of having excess, if I ever were in that position, would be to share as magnanimously as possible.

 I love helping others, it’s something I used to do when I was a funder and consultant working for those with big coffers. I spent years helping to allocate funds from private foundations and public agencies, and yes it’s fun to have access to lots of money that goes to worthy causes. Having also been a seeker of funding for various nonprofits I can say without a doubt it’s far more enjoyable to give than to ask for support.

Now I give donations to organizations I care about but I don’t give in any big way.  I don’t have economic or social capital, connections, I’m not aligned or adjacent with those in power, a much better place than feeling powerless and vulnerable. 

I’m on the board of a new organization affiliated with V’s school that is developing services for young adults 21 and over (he’ll be there in February), in charge of fundraising but I don’t want to be in that role; I’m so tired of seeking support.  

Of course I realize circumstances change: people get sick or hurt, have responsibilities thrust on them, are weakened or diminished in what they can do for themselves let alone others. And situations can change for the better too. The fact is I’ll never be rich and likely never will get to work again with those who are. But I like to think someday V will finally get the services he needs and I’ll at least be in a better position to give rather than get, to be the generous one rather than the recipient of others’ largesse. 

For now I’m simply flooded with gratitude for whatever support we can get. Rich not in money but in feelings of appreciation for whatever kindness comes my way. For now that has to be enough.

Flying Solo

Flying solo x 2: Yesterday T left for Portland to visit B, the first time he has seen him since he moved in April; also the first time he’s been on a plane since he flew to Seattle nearly 3 years ago.  I’m so happy for him, that he and B will have the next four days together reconnecting in person, exploring that wonderful city, and just hanging out. 

It feels like ages since I went away although it’s only been a few weeks.  A lot has transpired in such a short time, in some ways, in other ways it’s been typically uneventful. For now there’s been a lot for me to rehearse or learn to do while T is away, so many things usually in his wheelhouse, from carrying Ruby up and down stairs to preparing much of V’s food. (He’s a meat and potatoes guy and I’m a veggie and tofu gal so I leave it to the fellow carnivore to do most of his cooking.)

So I get lessons in how to hold Ruby, how to slice and fry the potatoes the way V likes them for breakfast, and how to make the spicy sausage or steak or burgers that he often eats for dinner. V has a huge appetite yet he’s also grown more finicky so things he’ll eat one week he’ll have no interest in the next. It’s frustrating and labor intensive to do all the kitchen prep needed. Then there’s the endless laundry – we joke that I’m intentionally bad at folding but I really do lack that spatial relations/tidy gene, so I load and unload and put away and leave the large folding table to T most of the time.  The fact is T is better at much of the day-to-day stuff needed for V, plus he’s bigger and stronger than him, which makes for a very different dynamic.  V can see right through me when I tell him to get up and get dressed for school, for example, whereas when T insists on the same things he responds.  

This morning he barely made it to school as he was insistent on staying in his nice comfy bed with his favorite blanket. Normally T could get him going but on my own he refused to get up despite my following the exact same routine T does. Finally by some miracle and shouting that the bus was here he finally arose and got dressed – he loves school so it’s just his way of being defiant with me. 

It’s made me anxious about T’s time gone in a way that is hard to admit. It helps to understand that V’s co-diagnosis, in addition to autism, is pathological demand avoidance – which as it sounds means he just won’t do much of what is asked of him. Especially from me. This makes for a lot of fear and dread and tension. He’s not intentionally aggressive yet he can have outbursts when he doesn’t get what he wants or is told to do something outside of his interest. I use the word resistant a lot but that might be a little too tame for a fiercely stubborn 20 year old.

This is why my sister and brother-in-law have generously offered to come down for the weekend to help me out, or at least offer moral support if V is in his stubborn mode and none of us are any help. I’m very appreciative of the company. Even with T here and involved, our lives are very lonely. On the one hand I long for companionship, on the other I’m hesitant to have anyone witness what our lives are like, the day to day challenges that most of you couldn’t even fathom. We have a good sense of humor most of the time – it’s an essential survival quality – yet we also have become acclimated to a lot of hardship.

The moments of grace still exist in mounds of dirt – somehow I had expected the balance to shift as V got older but new and different difficulties have taken hold from the ones that gripped us when I first started this journey. Yet perhaps I do have more grace, just as a matter of course, growing wiser and more accepting and especially more grateful for the littlest gifts as the years go by. The dirt and mess and chaos is no greater than it was, just different. So maybe the balance has shifted a bit.

Or at least time and experience can’t help but shift how we see things, as long as we choose not to shut down. Case in point: I just rewatched Enlightened, which as I’ve mentioned before is perhaps my favorite TV show ever.  Just like show creator Mike White’s recent and more broadly popular White Lotus, there’s a big heart amidst the seething satire. And Enlightened has such a lyrical, pensive and poetic quality to it. The protagonist, Amy Jellicoe, is insufferable and cringe-worthy in many ways; she’s also endearingly idealistic and good-intentioned.  And in the end, hope and the little guy break through the darkness and into the light of day and there’s the sense that change is possible. It’s the best sort of art: healing as well as entertaining, illuminating and funny and harsh and kind all at once. It seems odd to rewatch, reread or re-listen to anything when there’s so much new “content” all the time, but it’s nice to revisit creative endeavors, like going back again and again to a beloved book or city, discovering new elements and angles each time. To see how we’ve changed in how we react to the familiar, how we notice different elements with maturity and wisdom and the passing of time. 

And so I have no doubt T will have a great time in Portland, that he will enjoy his time alone – all too rare – and with B. I hope that here on this coast we fare well, yet even if we don’t we will get through it, flying solo for a few days.   


To Do/Overdone

Settling back in from a glorious vacation the to do list for V comes barreling towards me. These are tasks that fully consume my time and energy. It is why my answer to being asked if I work is, “Yes, I just don’t get paid.” It’s a bit too harsh though I realize, and serves as a conversation stopper, which is not my intention at all. So consider this a conversation starter for us and all the other caregivers out there because there are millions of us, all with to-do lists that can make us feel overdone and overwhelmed.

Our home therapists both just quit the agency we’ve recently started working with so even though our insurance will cover twenty five hours of services we currently have nada. The director of the agency says she’s trying to find the right person, which of course is what we want, but it may take a while. It’s been weeks and it’s clear it’s not a high priority for her as it is for us. I asked our case manager at school to reach out to staff but got no takers, even though home therapy pays much better than being an aide. Even with good wages it’s hard to find people who want to work with a young man with severe autism. We can’t even find anyone we can pay out of pocket. So we currently have no help, which makes for long evenings and even longer weekends.

We call our insurance company case manager and she suggests we find another agency and gives us the contact information for nine other agencies we might contract with, and I start making calls and doing research to try to find some place that can actually provide services. To do lists often splinter and grow like this.

Headache number two. We’re also dealing with the disappointing aftermath of a new bill passed in our state allowing a bridge year – an extra year of school for those deprived of significant learning due to the pandemic. V definitely qualifies: he had over a year with no internships or job training or help with independent living skills or the speech and occupational therapy still in his IEP [learning plan], and virtual learning was a total bust for him. But like many other districts, ours is doing everything they can to discourage us from having the extra year (while covered by state funds, they have to pay for transportation and administration). We have upcoming meetings to prepare for and a potential fight ahead to get him what he deserves and is due.

Also on the topic of fighting to get V what he needs and should be receiving, I will have to redo the long survey that determines how much funding he will receive once he is 21 because he wasn’t given the rating that aligns with his needs – it’s roughly half the funding he should be getting. Although I attended several workshops in preparation for this evaluation – there are 18 pages of questions that come at you rapid fire on a phone call – I still didn’t go far enough apparently so we will have to request a redo and hope for the best.

Even with the excellent (and expensive!) special needs lawyer we have for all this there’s no guarantee that V will get everything he needs. The relaxation of the previous week – where the biggest decisions were where and what to eat – has evaporated as I deal with much higher stakes matters as well as V’s daily needs, which are substantial.

Not a very fun or uplifting post but that’s where things are right now. Watching sitcoms at night to try to get some comic relief. Trying to remember to breathe. Reminding myself that I am not alone although having so much on my plate feels isolating and lonely. Working on feeling happy for others’ joy, and empathy for those who share my stress level, those doing jobs that need to get done whether we want to or not. 

PDX-ewr: returning

Back from a wonderful trip to Portland. B is great and so is his chosen city. Beautiful architecture, gardens and parks, delicious food, friendly people – even in cars they’re cordial out there! – stunning roses, the only thorn being the huge homelessness problem. Portland has the highest homeless population per capita of any US city, with an estimated 40% mentally ill, and a significant percentage having substance abuse issues. It’s an unavoidable, highly visible and smelly problem, hard to get at the root of why and how it became so bad. Parts of downtown boarded up, again hard to say how much is from the pandemic – NYC also has a lot of empty storefronts these days – and how much is because of rioting and homelessness.

Still, as disheartening as that was, I admit it did not stop me from enjoying myself completely, the freedom of being away from home, the opportunity to walk over 20,000 steps, or about 10 miles a day without even trying, just being out and about, going from the hotel to B’s apartment, checking out different neighborhoods and food carts and the riverfront. We rented a car for a day and went to Cannon Beach, which was also gorgeous, in sun, showers, a squall, more sun…the weather is great if you like change.

How to summarize a vacation? I’m at a loss for words, and at a certain point I got tired of taking photos, although I did get plenty from the rose and Japanese gardens and some nice beach shots. Not captured: all the downtime, the intimacy of being together, B & S and I having little adventures, the way time is so different when you are away, whole days to fill without any pressure or schedules to follow. So good to travel with S again after so much time, we get back into the rhythm of our old days, a bit slower, some more time to rest but still curious and open and engaged with wherever we are and whoever we meet. We’ve aged well I think.

So proud and happy for B, who has a cute little apartment in a wonderful neighborhood and a good first job with really nice people and a great atmosphere. The only downside to being in Portland is the distance, although with direct flights it doesn’t take too long; still it’s not somewhere to go more than a few times a year. It is an area to aspire to move as I’m not in any way married to the East Coast, except for my family here that I wouldn’t see as often.

Back home T and V did fine without me, and I’m so grateful at how gracious T was about my going away. A little jet lag the first few days but other than that I get right back into the daily patterns where everything is so regimented: when V gets up, trash days, Ruby’s walks, following up on calls and emails related to V and his future. Things are flat and repetitive, surprises are rarely a good thing; predictable is much better generally speaking.

I go back and look at photos, which will have to do for now because words are failing me (among the small mishaps while I was away: a lost pair of earbuds on the flight in and my computer stopped working so I’m writing on my phone). Grateful for the holiday and doing my best to settle back into life sans B, a happy yet slightly bittersweet homecoming.

away at last

EWR-PDX Friday September 24th 11 am has been imprinted on my brain for the past month like a beacon of hope, that thing to look forward to that has kept me going. That is when I am scheduled to depart from Newark for Portland to visit B for four days. I’ve been so excited to visit him. I miss him more than I let myself realize because it’s easier to feel it as an absence than an ache.  And I am so happy for him, so thrilled that he is spreading his wings clear across the country. I’m proud of what a fine young man he is and…and if I keep going I will get all sappy and I’d rather not. It has been five months since I’ve seen him, the longest we have ever gone without in-person contact.  I’m hoping to see him more frequently if I can manage it. And managing it is an effort.  

T is terrific, he is up to speed with being primary caregiver for V and Ruby, it’s just that I know it’s a lot for one person. Just this morning, before I get to the computer, I wake up at 5:30 with a knot in my stomach that our scheduled weekend help has fallen through and he’s completely on his own.  I drink a half cup of yesterday’s coffee I put in the fridge just in case I had this sort of early morning, meditate and pray, do the mini crossword and check the headlines to make sure there isn’t a new war/flood/other climate catastrophe. 

By then it’s time for the real day to start, the one with duties.  Make a pot of coffee, make lunch, unlocking and locking along the way: tortilla chips, salami, yogurt, mango chunks.  Kids half his age make their own lunch but V has no control around food. It is why everything is locked. It is why after I get him ready – which includes luring him into the bath and then having T shave him and rinse his hair and having him come down for breakfast without putting on any other clothes he finds: earlier in the week he ran down to the basement where he spotted a sweatshirt on an 80 degree day; yesterday he located the shirt he had worn the day before and put it on over his clean shirt — it’s hard to be so alert so early in the morning to catch things before he does until  the van comes – much too small for four teens/young adults, a matron and driver, and V sometimes has  a problem going to his assigned seat instead of where he’d prefer to sit. So I am beyond relieved by the time he is successfully out the door and on his way.  But before I can catch my breath it’s Rubytime, time for the slow slow walk for her to sniff the morning news and for me to watch all the neighbors gathered at various bus stops up and down the street, the parents chatting, the kids playing on the curb, the normalcy of it still after all these years causing a little heartache, because I expected my two boys, so close in age, would be like the other siblings I see together. 

That that would be the farthest thing from the truth is something I never could have fathomed even after V’s diagnosis because people with little kids never want to think that far ahead, to even consider that we would need to make such detailed and thorough arrangements for a 20 year old in order to go and see his older brother (T and I are each making separate trips over the course of the next month) because we can’t travel with V at this point. Although I just read an article about a woman who started biking with her severely autistic 24 year old and had a vest made that said “Autistic – Be kind” and she said that it drastically changed how people responded to them, from impatience and frustration to yes, kindness. I wonder if such gear would have helped with all the awful experiences traveling with V over the years on our regular trips to see T’s family in Seattle, the way we were treated by insensitive airline staff and glared at by other passengers. Now with so many more unruly confrontations on airplanes I can’t imagine taking V on a flight.  There’s so much I can’t imagine anymore. 

And so the relatively carefree parents and kids on the curb, as adorable as they are, as wonderfully interracial as our neighborhood is, it’s still like staring at a portrait of a future you’ve been denied. I try to let it go, to shift back to gratitude and mindfulness, like Ruby, who knows nothing but to sniff at whatever presents itself. She has accepted her decline without even seeing it that way because that is the gift of being an animal, you just can’t overthink things. 

She goes limp as T carries her inside and I mash her medicine into wet food to help her achy joints and then finally, my kids are taken care of, I start the unlocking one last time for my own breakfast: almond butter hidden behind the canned goods, raspberry spread locked in the fridge, gluten free bread locked in a cabinet, only the coffee, which V has no interest in, is out in the open.  It takes as much time to gather and then re-hide the ingredients as it does to make breakfast.

By the time I sit down at the computer I feel like I’ve already had a full day. I wonder why the words don’t just flow as soon as I am situated and yet I acknowledge my effort.  So much effort. And how it will be a good thing to be away from it for a few days and to have time with B and S. Yes, that is a special bonus that my BFF who is also B’s godmother/friend is coming out too. 

S was my traveling companion for many years – from Argentina and Brazil to Hungary,Turkey and Mexico –  and it is so exciting to be going away with her again and to visit B, who we both love dearly.  So much abundance it’s hard to contain myself.

I go through the same obsessive patterns I always have with travel: I call twice to confirm the hotel reservation, check the airline itinerary repeatedly to make sure I didn’t get the day or time wrong, make sure my ID and other essentials are in my wallet, and that I have the wallet in hand and concentrate on what else I can control because the fact is most of life we can’t control.  We deceive ourselves by focusing on what we can master and blocking out all the uncertainty of life. To embrace uncertainty, now that takes a lot of effort, at least for me.  Meditation and prayer are what keep me from getting lost in loops of “What if…” because whatever arises I will handle it as best I can. That’s all we can do.

And so it is Friday morning and I’m fully packed and ready to go: confirmations and itinerary on my phone and printed out for reassurance, I think I remembered everything I need but anything I forgot can be found and purchased in a city of 600,000. A city where there is one awesome person I can’t wait to see.

the details

We often communicate with abbreviations or brevity as placeholders when we don’t want to get into the details. How are things going? “Hanging in there” is my favorite response. It keeps things vague, not too negative. But in leaving out the details there is so much I don’t share, and with that, so much that isn’t seen or understood. I appreciate when others are blunt and honest, so why shouldn’t I be too?

An example. Monday I had my bi-weekly Zoom support group. It’s scheduled for 7 PM. At 6:45, we’re all hanging out in the living room listening to music: one of V’s Spotify playlists on my phone is blasting through the speaker. He’s calm and content listening to Vampire Weekend, the Killers, an assortment of familiar bands and songs. I plan to use my computer for the meeting, but there’s a new login link I was texted and for some reason (I’m usually passably adequate but I’m not the most high-tech person) I can’t get it to work. I don’t want to miss the meeting so I tell V I’m going to take the phone for a little while. I login on my phone with no problem, appearing briefly on the screen with the other women in the group, when V has a complete meltdown.

Sorry I couldn’t participate in this week’s session, I explain, V was having a rough time – that’s another shorthand I use a lot – but what exactly does that mean? What I appreciate about the support group is that even though our kids have completely different diagnoses we all can relate to the challenges of parenting a child with severe behavioral or emotional issues. I can, if I choose to, share the details, although sometimes I feel too burnt out to explain and leave it at that, a rough time.

What it really means: V stomps his feet, he cries out, he tries to grab the phone back, I have to lock myself in our room, he starts banging on the door and gnawing on his hand, close to biting but not quite. He doesn’t have the words or maturity to say “I want my music back!” We can’t have a reasonable conversation about it, where I tell him it will be back in 45 minutes and find him something else to do. We choose our battles and in this case it seems more important to skip the meeting, much as I’ll miss it, than to have to have an entire evening with V being out of control and likely having trouble going to sleep later. So I disconnect Zoom, put Spotify back on and watch as V goes back to his favorite chair with the speaker on the table next to him and listens to music until, with the help of his evening meds, he is tired enough for sleep. Crisis averted.

Having a difficult day or a rough week or a hard time can mean a lot of things. And while most of the time he’s well regulated enough to function fairly well there’s that 20% or so when he’s not, when something sets him off and plans get cancelled or changed. This summer when he went to camp in August there was one day each week when he was completely out of sorts and unable to attend or participate fully: the first week it was that he refused to get out of bed one morning, the next week one day he went racing out of the doors once he arrived and wouldn’t go back in, the next week there was a day when he spent the entire time hanging out in a hallway, refusing to take part in activities. We had no explanation for any of these off days, how they would occur in the middle of an otherwise good week. I was grateful that he had such a great time the other 4/5th’s of the days, but making plans was challenging.

The extreme weather we’ve had this summer is a good metaphor for the type of caregiving I do. Moods move in like clouds before a storm and what was a bright cheery day erupts into something it’s hard to handle. “We’ll be there shortly” becomes “We can’t make it.” It’s why support groups or just having a few people you can be real with is so important. It’s why I want to explain some of the details a little more. To gain some understanding and acceptance (and hopefully not garner any pity, which is the last thing anyone ever wants when they share their truth.) When I listen without judgement to the other women in my support group, I really grasp their unique struggles; I see how, like myself, they feel frustrated and exhausted when the storms occur and yet find a way to celebrate the smallest achievements. When we had all that rain and lost power during Ida I was as flooded with appreciation as our basement was with water, relieved that V, while upset when the lights went out, did not have a complete meltdown, that he somehow adjusted and got to sleep alright.

And so I work on cultivating equanimity – to have some evenness of mind even under stress. That means not to get too upset when V is dysregulated, whatever that means at the moment, not to get too complacent when things are going smoothly, yet not to be on edge all the time waiting for when he will fall apart, when the weather patterns will change. I sit here now and the only sound I hear is Ruby snoring. I know this calm won’t last but I enjoy it while it does and I trust I have the resilience to get through the next storm, whenever it arrives.