the big kids in the elevator

Next month V turns 21 and no, I’m not preparing a celebration in the way one would for a neurotypical person reaching that landmark. Instead this week I’m scheduling and preparing for a re-do of the comprehensive assessment tool that will determine how much annual financial support V will receive based on how I answer 18 pages of questions about how well he functions, how much support he needs to perform basic tasks, his behavior.
The lower the ranking the more money he will receive so parents are advised to answer from a worst day/case scenario. Pages and pages of yes, he still needs help with…just about everything. This is not the place to sing his praises or talk about his strengths; the whole point is to emphasize his deficits. So it’s a very depressing process, the opposite of a celebration. Hardly what we ever imagined.

I still remember V’s first school after his diagnosis. We liked the location in Dumbo Brooklyn, the kind teachers, the bi-weekly support group for parents of the 3 and 4 year olds in the early intervention program, most of us still shell-shocked from recent diagnoses of autism, still trying to make sense of this strange new world.  It was, given the circumstances, a generally positive experience.

The one thing that made us uncomfortable were the big kids in the elevator. The teens and young men – there may have been girls too but I remember the guys, because there were so many more of them – with their odd behaviors and demeanor, with their pacing and flapping and lack of language or social skills, still needing an adult to accompany them to their classrooms. That was not the future we were told about.

When V was first diagnosed and we signed up for early intervention a social worker handed us the widely shared Welcome to Holland poem by a mother of a son with Downs Syndrome, a very different condition than autism [https://www.dsasc.ca/uploads/8/5/3/9/8539131/welcome_to_holland.pdf ]and the book Let me Hear Your Voice,  written by a mom with two boys with autism who she magically “cured” with round the clock help from ABA therapists in her big Upper East Side apartment. I couldn’t relate to the specifics of her life yet I longed to believe in the storyline, which was the only story I heard back then. That if you just work really hard with a dedicated team of professionals and supporters/cheerleaders, your kid would make remarkable progress. Surely things had changed since the big kids in the elevator were V’s age, because there seemed to be such a gap between where they were and the bright tomorrow we were assured awaited us. 


I know lots of parents of kids with special needs who have had the opposite experience: they were told all the things their children likely wouldn’t be able to do, the struggles they would have, the lack of opportunities. And it is so much easier to get behind them and cheer them on (You show them! They say no, we say hell yes!) But that wasn’t our experience. We were inundated with the positive. There were new and better interventions and therapies being developed all the time. We and all the dynamic committed members of Team V would rally round and we’d put our noses to the grindstone and we would reshape that bleak sounding future into one where anything was possible. The little boy who had regressed so severely, who stared into space and had lost all his language and could no longer relate to others, he would evolve into a well rounded child who spoke full sentences and looked people in the eyes and made friends and learned to be independent like any typical kid. I didn’t fear the future back then, the future was our friend.

I never could have imagined the life we have had, the setbacks and disappointment. That while V has made progress and has many strengths and gifts as a person, his own unique personality and form of intelligence, there would be so many challenges. I never looked this far ahead and when I did I never could have fathomed that 21 would look like this, that V would in fact fit right in on that elevator from long ago, that it would be so obvious to anyone observing him that he was on the more severe end of the autistic spectrum, that we would not be in Italy or Holland or any other country in existence and instead live in some parallel universe no one had ever described to me. That yes, there would be beauty and bounty scattered throughout the rocky road yet walking that road could wear a person out.

Were I to be a social worker greeting the newly diagnosed, I’d give them completely different materials to read, radically different stories to hear from a wide range of perspectives and experiences. I’d say yes, try everything, be committed to your child’s progress in this life and also be open to the full range of possibilities. Don’t compare, don’t blame, let go of those habits that will make you feel worse and concentrate on what is. Find people who will be supportive, who won’t judge or get uncomfortable when you share your truth. Take time for yourself because this journey can be enervating and you need to conserve your strength.
Develop a thick skin because a lot of people will be unkind and insensitive. (I’ve never been able to do this myself yet I’d urge anyone to try not to be as thin-skinned as I am.) Be forgiving, of yourself and others. Learn to live with uncertainty because you will face much that is unfamiliar, that has nothing to do with what country you are in or what language is spoken.
Find comfort where you can yet don’t get too comfortable: just when you feel at ease, that you know the rules and routines, they will change. There’s no room to be complacent. Then I’d hug that parent with all the love I had and let them know that they were not alone even though the road might feel lonely.

I can’t remake that road or re-write my story. For now all I can do is re-take this assessment next week. And keep planning for a good future, a future that will be our friend.

hygge-esque

Hygge is a Danish term defined as “a quality of cosiness and comfortable conviviality that engenders a feeling of contentment or well-being.” Pronounced “hoo-guh,” the word is said to have no direct translation in English, though “cozy” comes close. It derives from a sixteenth-century Norwegian term, hugga, meaning “to comfort” or “to console,” which is related to the English word “hug.”

The primary principles of hygge in Denmark include atmosphere, presence (the ability to be focused in the now), pleasure, comfort, and togetherness. The concept of hygge is about gratitude and savoring the simple pleasures that bring you joy,

From several articles I read on New Year’s morning as I reflect on the year ahead, how best to handle hardship with grace and even appreciation. Wool socks and slow simmering soup I have down but being fully present when the going gets tough is still a hard one for me. I don’t think I’m alone.

Hygge as a lifestyle I can’t even touch in this period of caring for V in a pandemic. No saunas, glogg, Scrabble games while the fire rages. No candles burning.  No, we have to nix the long walks outside and warming up by a fire or natural light everywhere, given that V is still refusing to zip his coat so our walks are shorter, and he blows out candles because he associates them with birthday cakes (although he does occasionally let us keep the Shabbos candles lit). There are no gatherings of friends to play board games, we don’t even have any help since our home therapist came down with Covid.   

And there’s the way it butts heads with our current political climate; it takes for granted a certain level of support and leisure time many Americans lack: “Perhaps Scandinavians are better able to appreciate the small, hygge things in life because they already have all the big ones nailed down: free university education, social security, universal health care, efficient infrastructure, paid family leave, and at least a month of vacation a year.”

So while I embrace the concept the fact is that much of the leisurely togetherness of hygge is outside our realm of possibility right now.  Yet much of it still resonates for me, the pieces about simplicity and presence and savoring. 

The best I can embody hygge is to work on being present and grateful for what is. Yes, school is cancelled due to a spike in Covid cases and yes, we’re all healthy and well in our house. V is in relatively good spirits given his boredom being stuck inside. Yes it’s brutally isolating and yes I have good friends and a loving family. Yes things are hard and they could be so much worse. And so on. I can’t change my circumstances yet I have control over how I end a sentence.

And I can work on the savoring, on comfort and warmth. The smell and taste of that first cup of coffee in the morning, the dal we’ve been making for the past month (an Indian lentil dish that we’ve reconfigured into a savory vegetable soup), comfy sweatpants, a space heater on the indoor front porch, where V likes to sit on frigid days looking out the window. I’m trying to take more tea breaks where I sit, sip and savor for a few moments and try to transport myself. Taking in the startling beauty of the first snow of the year. I’m wearing flannel pants and staring at the snow-covered branches out the window. I’m warm and content. No, this is hardly Copenhagen. Still we take our coziness where we can get it.

Hugs to you on these cold winter days.

Getting Back

Another long break. A lot to process in these dark days of December. When days are heavy we need to go inward, to have space and time to heal. We also need escapes, something vivid and enveloping to lift our spirits or at least avoid them as we dissolve ourselves into the lives of others.

Nothing has done that for me lately as well as the Beatles: Get Back, the 8 hour documentary by Peter Jackson. Yes, 8 hours. And yes,you have to subscribe to Disney Plus but I felt it was worth the mere $8 to lose myself in such a rich and complex tapestry of drama. Yes, there is a lot of drinking tea and other unidentifiable liquids, lots of long moody silences. Also playfulness and
in-jokes from years of being together, of this young band being a family.  But observing relationships foment and unfurl in real time is not like watching paint dry unless the painter is Jackson Pollock. Too much happens in the inbetween.


With all the challenges and infighting and long stewing resentments there is still such a strong connection, and the flippant and at times furious four become a unit, they come together. The film and what they go through is a great example of both/and: how all endings, in retrospect, give us much to appreciate in all that went before.

All happy families are alike, but every unhappy family is unhappy in its own way, Tolstoy said. The Beatles film is in fact a family drama, like a Russian novel or perhaps more like a Checkhov play where all the characters spend hours in a room filled with long brewing resentments and bitterness as well as fierce connections and attachment. 

Brian Epstein, their long-time manager, had committed suicide the year before, leaving them adrift; though only a few years older than the band members he was a father figure to them all.
So there is Paul, trying to keep the ship afloat, at turns bossy and self absorbed, supportive and collaborative. There is John, sarcastic and remote, attached at the hip to Yoko, yet in moments deeply connected, joyous and playful.  There’s Yoko, who clearly did not break up the band, but was a constant and often superfluous presence.  Whatever her talents this was no platform for them. There’s George, wounded that his songwriting skill is not appreciated and is shadowed by the Lennon-McCartney cannon.  If only they could see him as more than a brilliant guitarist. And then there was the master drummer Ringo, often hungover it seems but reliable and present throughout it all. 

Witnessing relationships ending is bittersweet and painful.  Yet out of all of that, through all the Sturm und Drang is so much creativity.  You can literally watch songs take form, the phrase, a chorus, a turn of words come together to become a much loved song; at its height Paul writing Get Back while a bored George and Ringo appear to be listening to an advanced lecture in Astrophysics rather than the making of a classic. John is nowhere in sight. 

And after 7 hours of tea and toast and the high’s and lows of the four brothers in turn bickering and stewing and collaborating as comrades, there is the effusive performance on the roof. If you think nothing happens, rewatch the first and last half hour, as I admit I did. In fact I watched the ending 3 times just to be immersed in the exuberant climax to such a bittersweet story, to see the importance of downtime and discord in the creative process.

We all live in the movies of our own making. This time of year ours is stultifyingly dull and long, V has little focus and so the unstructured hours seem interminable. I don’t post here in large part because I don’t like what I have to say, I don’t want to be a complainer but an explainer and it’s challenging to do the latter without traces of the former mixing in. Being “on V duty” for such long stretches never gets easier. I am mesmerized by the spaces where little seems to happen on a screen, frustrated at how it feels in real time.

Yet I soak up the precious time alone or with T: at night with TV or movies, in the morning with my happy lamp and reading, writing little snippets I like alongside long stretches that I don’t care to share, that I keep rewriting because I want it to be a dark comedy more than a heavy drama. I hope at times I succeed.

I finally can appreciate how gratitude and acceptance are the antidote to the holiday season. V waking up at 330 am on Christmas leads to a very long day indeed, and on December 26th he sleeps past 10 to make up for it – a wonderfully late start to the day that allows me to sit looking out the window onto a quiet street where just last month I was still going out each morning with Ruby. The temperature at 8 am is no longer an issue. Things seem unmoving and yet they do in fact change, often alarmingly quickly.

Since December 21st, the longest day of the year, the daylight grows incrementally longer each day. That’s the sort of thing I remind myself of to get through the month. It ends slightly brighter than it starts. In January school hopefully will return and the days will be longer still. Grief remains yet time and love help the healing process.

To anyone out there reading this I say thank you. Thank you for letting me share small pieces of my life, thanks for reading this, for helping to alleviate my loneliness through a narrative that often is not as sweet as I wish it was, and yet is filled with much to be grateful for.

I wish you a sense of belonging and feeling loved in the world, of being part of something bigger than yourself. And a year ahead that continues to get brighter and better.

Meld

A week off from writing for the holidays. B came home for the first time in over 6 months and it was wonderful to see him! He was here last Monday to Friday for a low key and lovely visit. 
Everytime i see him it makes me realize how much I miss him.  So having him here, just hanging out, eating his favorite foods he can’t get in the Pacific Northwest, was a joy.  It’s hard that he’s so far away yet I’m glad he’s spreading his wings and settling into a new city and part of the country.  It’s a good thing to do when you are young.

V was glad to see him too, he just couldn’t tell him in words but with smiles and bright eyed stares into his face. I’m so aware of how T & I miss him because we express it so readily and frequently that I don’t give enough weight to how much V feels his absence also.


So it was nice to have a few days together.
On Thursday we all went down to my brother and sister in law’s house for Thanksgiving. It was great to have our whole family there after two years: my dad and siblings and nieces and nephews and baby great-nephew. I felt thankful for everything that went right: no traffic, a full day with relatives who all get along and love each other, a big delicious meal, both of my boys there with the rest of the extended family.

I was especially thankful – and pleasantly surprised given my trepidation leading up to the holiday – that V was on great behavior.  He is comfortable at my brother’s house, because they have such a lovely home and they are the most gracious and accommodating hosts.  Even having missed a year he was immediately at ease, and while he normally spends most of the time in their nice finished basement he actually sat at the table part of the time, which felt like a minor miracle.  I realize I worry too much but the fact is that things often do not go so smoothly and I gird myself for the worst.  V’s behavior is unpredictable, which leads to stress of the unknown, the many “what if’s” that are often reality.

Usually when you take a familiar path or follow directions, you have some sense of the end result but life with V is not like that and we have to be prepared for various scenarios.  It’s not like following a recipe and feeling fairly confident that if you complete each step as laid out it will turn out fine. Which is why activities like baking are so rewarding.  And while this was my first time making pumpkin pie in two years, the tips I’ve learned still worked.  For crust, freezing the butter and then grating it into the flour is a good trick. And for the filling, first heating the canned pumpkin with the spices so that it tastes more homemade and the flavors meld together.

Meld is a favorite word of mine, it’s the secret to much cooking: to have the flavors merge and combine. It’s also a good goal in life; at its best we blend into one unit, all separate and unique yet sharing a common experience and space. Which is what made Thanksgiving so special this year. Four generations spread out in the living room, sitting together at one table, sharing a special meal. For me, it is a rare gift to take away the isolation I experience so often, to feel myself meld with those I love and hold dear. For that I give thanks

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.   

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