Spiraling Up

Saturday morning I get up earlier than I’d like – though my body craves sleep my mind longs for peace and quiet, those fleeting moments when no one else is awake. I hear V stir and check in on him. He’s still sleeping but clearly was up during the night. I canvas the room, feeling more like Johnny Depp’s personal assistant than a parent: there are remnants of a pillow he’s somehow torn apart, strewn across the floor and it is hard to see him under the pile of stuff on the bed – I have no idea how or when he tore it open, or went into the bathroom and brought back everything that isn’t nailed down: on top of his comforter there are two towels, two bath mats, a washcloth, and the porcelain top of the toilet, which is not as gross as it sounds but is an odd new addition to his usual accumulation of stuff.

His impulsivity is so exhausting to keep up with- especially a recent compulsion to put on layers and layers of clothes – that we’ve moved his dresser into our room, along with a bin filled with soap, shampoo, washcloths; shelves of towels and sheets; and hooks loaded with sweatshirts and jackets. One room entirely empty, the other so full it looks more like a yard sale than a bedroom. Life out of balance.

Fortunately home therapist R comes on Saturday morning. I’m so appreciative for his time and all that he and V’s other home therapist do to help him with independent living skills, but the truth is we could use two or three times our current 12-14 hours a week. We’re approved for state funding for 18 hours/week but rarely receive that much; we supplement with other help, but it’s an ongoing effort to find people with experience and availability given the need for services.

The amount of supports V still needs are extensive, and the more he gets now the better able he will be to lead a fulfilling life, and the more skills he gains, the more possibilities there will be for adult residential living someday. In an ideal world (like in Canada or most of Europe) we’d have a near constant mix of therapy, mentoring or companionship, tech support, community outings and job training – a degree of help that is out of reach for the average low or middle income family.

R and V tend to their schedule: showering and dressing, breakfast and clean up, leisure time activities: usually a walk, some simple reading and writing exercises, sometimes a baking or art project. I have my own routine, broken into segments of must do’s: walk the dog, breakfast and the first round of clearing his room so he can sweep and make his bed; an hour of writing, never quite enough to hunker down and get in a flow; then back to housework and lunch prep while listening to Wait Wait Don’t Tell me, the funny week in review radio show that feels all the more necessary these last three years.

This week is different because I also have to prepare for our trip into the city with visiting family. It’s wonderful to have my sister- and brother-in-law here (staying at a nearby hotel – no room at our inn) after much too long without seeing them, and it’s a good excuse to go into the city, where we lived as a family for our first 7 years and which is still a short train ride away.

While V loves the city and seems to sense its a place where his difference and eccentricities are accepted or not even noticed, we’ve been going in less frequently the last few years. There’s so much to take in and enjoy but also a lot to keep on top of along the way: train rides, busy city streets, subways, bathrooms and restaurants and other public spaces to navigate in a way that maximizes enjoyment and minimizes anxiety or the possibilities for meltdowns. Being out in the community is important, but it’s also hard work.

The local library now offers free museum passes (let’s hear it for public libraries!) and I pick the Guggenheim – in addition to great art, it’s a spectacular building designed by Frank Lloyd Wright, and even for those not as enamored of its stellar art collection, provides a unique experience for its visitors to climb up the galleries that extend from the ground level in a continuous spiral. And its location right across from Central Park makes it ideal for visitors who can’t last too long in museums.

We enter and slowly ascend the ramp, although we soon enough are going at different paces: V either racing ahead or sitting down as the rest of us take turns keeping up with him.

For me it’s like a homecoming. There are familiar paintings I love, and artists like old friends I haven’t seen in awhile: Francis Bacon! Wassily Kandinsky! Ana Medieta! There are a few artists I’ve met (Glen Ligon, Vito Acconci) and one who I’ve seen perform many times (Nan Goldin). Names that you may not recognize and mean little anymore except to remind me of a time when I used to go to museums and stare at favorite paintings, when life felt so big and culturally rich. It’s a bittersweet pleasure as I take it all in, aware of how small and constricted that life has become.

V gets antsy so the guys go out with him to walk in the park while the rest of us finish spiraling up to the top where I look down and feel for a moment ‘the temple of the spirit’ that Wright conceived of when designing the building.

And then we head back, the same delights and challenges of being out with V, trying to look at architecture and hold a conversation while making sure he doesn’t rush ahead or fall behind or simply stop altogether; each step of the journey punctuated with an explanation point at another triumph. We’re walking here! We’re eating in a restaurant! We’re waiting for the subway! We’re having fun! “There are two ways to live your life,” according to a favorite Einstein quote, “One is as though nothing is a miracle. The other is as though everything is.” Our obstacles lead us to the latter approach, aware of constant little miracles as we navigate the world, grateful to feel a part of it.

Franics Bacon Triptych

A Wabi Sabi Christmas

Christmas 2019

Wabi: the beauty of humble simplicity, and sabi, the passing of time and subsequent deterioration: everything grows and decays.

In traditional Japanese aesthetics, wabi-sabi (侘寂) is a world view centered on the acceptance of transience and imperfection. Originating in Taoism in China before being passed onto Zen Buddhism, its current meaning embraces impermanence and melancholy.

Wabi sabi is mentioned in two separate articles I read on Christmas morning, and as I follow that with reading more about what the phrase means I concur that accepting transience and imperfection seems like a good philosophy to practice through this longest of days in a long and lonely holiday season, to help me to see that it’s not so bad if I accept that it simply is.

Even limited expectations have to be amended to the beloved Jewish Christmas tradition of Chinese food and going to the movies. Plans are made and altered based on how well-regulated V is and a few other seasonal factors: is he calm enough to go out to eat? Can he sit through even half of a movie? Is it warm/dry enough to go out for a walk and for how long? How will I get through this day?

Amended Plans:

-Gratitude list (I slept and woke up – I’m alive! Coffee. A few minutes to myself before V or Ruby need me…)
-Drive and pick up Chinese food from great little Taiwanese place
-Go to nature preserve for walk
-Go to movies Netflix
-Make and eat latkes, light candles, more gratitude

I’d prefer to eat out, to meet up with friends as we used to do. I wish we could go for a longer walk without all the mud and rocks and branches fallen on the path being a deterrent to Ruby, whose nose is still attuned to every smell but her body cannot keep up as well, And if only V wasn’t so easily distracted or excited by various sensory issues: he keeps stopping to push his pants legs up and then he finds a nice big rock to sit on and refuses to get up for a while, and stops again when we get to a particularly muddy part of the path. We take turns walking with him or waiting him out.


Much of the day spent inside with music, reading, screens. Nothing festive or social but nothing unpleasant either: no run-in’s with family members with different political viewpoints, no exhaustion from cooking and hosting or attending a big family meal. We’re all relatively healthy, a huge blessing. It won’t always be this way, for better and worse.

Accept and savor the imperfection. That’s my wish for all of us in the year ahead.


I

a different kind of genius (12/24/09!)

I’m starting out with an old favorite – hard to believe it’s been 10 years since I wrote and lived this. I think it gives a good overview of some of the challenges we face, and how easily we underestimate those who are different from us. Much has changed: we’re all older, obviously. The grrrrls – Ruby and I – are slowing down a bit, dealing with worsening arthritis (and for Ruby, cataracts and balance issues) and savoring the simple joys of life all the more. B & V are healthy and happy young men who tower over me. I no longer can go out alone with V because he’s so much bigger, stronger and faster than I am. We all still enjoy a good walk in the park though. And there are still lots of unsolved mysteries, old and new...

genius

from Latin genius: guardian deity or spirit which watches over each person from birth;
natural intelligience, wit, talent, from root of gignere
beget, produce , from base gen

The afternoon of Christmas Eve was bright and snowy, and of course there was no school so I thought it was a nice day for the dog park. Get in the car with 11yr old boy next to me, 2 year old dog and 8 year old boy in the back seat.

11 yr old turns on radio in search of good music, which is the one common language we share in this car.

“These damn Christmas songs. you can’t get away from them!” I scream at the radio.

“Mom, ” boy says calmly, as if he is talking to a petulant child, “we live in a country that’s 80% Christian and it’s the day before Christmas. You can’t avoid Christmas carols right now.”

I smile. Smart sensible kid I’ve got. Not only does he know the information (it’s 79%) , but he can use it to make a point, and still have a sense of humor about it.

People have always marveled at his capacity for learning and retaining exhaustive amounts of information. At age 4 he gets hold of a subway map and studies it religiously until he has memorized the whole thing, and can give directions from Kennedy Airport to Park Slope (you have to switch from the A to the C and then take a shuttle to the Q). Aunt gives him a puzzle of the US when he’s 5, and next thing you know he’s got every state down, spelling and all, even Massachussetts. While other kids are just getting past the “open your mouth, here comes the train,” I’m cutting eggs into little pieces. “Open up, Here’s Virginia!” ” No way, mom, that’s North Carolina!” That poster in his kindergarten classroom with all the Presidents? You guessed it. Learns them all, the Vice-Presidents, the years they served. He’s so smart, people would say, and of course it’s true. But they always noticed the part that’s easy to measure, like vocabulary and facts. To me, it’s always been about how to connect things, to keep hold of the details and the big picture. Being smart is fun, it’s not a chore.

We talk a bit more about religion, and I tell him that there may not be many Jews, but the vast numbers of Hindus and Muslims in the world make the whole Christmas thing kind of a wash in the grand scheme of things. I think this may be comforting. Then I drop him off at a friend’s house, to talk about more age-appropriate things. “Have fun!” I say, and turn the radio to the news (bleak, in a nondenominational way) as I head to the dog park with the remaining passengers, silent in the back seat.

It seems like a pretty simple plan. Dog and boy could use some exercise, and I always like a walk in the park. Grown up, child, dog. What’s the big deal? But it’s not that simple. I have a child with autism and a hound dog, both of whom, in their way, are more finely tuned to their environment than the rest of us.

In her book Animals in Translation, Temple Grandin writes that psychologically, animals and autistic people have a lot in common; both have mental abilities typically underestimated by neurotypical people. Autistics, in Grandin’s view, represent a “way station” between average people, with all their verbal and conceptual abilities – and the limitations therein – and animals, that innately have a focus or expertise that is in their blood. Dogs are smell experts, birds are migration specialists, some have such a refined sensibility that they possess a form of genius much as an autistic savant, who may have extraordinary memory or mathematical or musical capabilities far beyond the average person.

Grandin, a scientist with autism, whose expertise is in the humane handling of livestock, writes about noticing little things that bother the animals – like a small flap of fabric brushing against them – that the average person doesn’t see. This is because the average person is in a constant fog of thinking or talking or texting that tends to subvert any innate brilliance we might have once had.

I let them both out of the car, holding boy’s hand and clutching leash, and watch their senses go wild. I think of that bumper sticker I once saw on a truck ”There will be no speed limit during the rapture.” I watch them both have a religious experience and try my best to translate.

Dog: OMG. This place is scent-sational(yes, dogs can make puns) I smell such richness of dog: a pit bull here 10 minutes ago trailed by a basset hound and a boxer-lab mix and so many others, and I sniffed 2 squirrels climbing the tree and can smell dozens of their cousins, out of view on other branches, and rabbits and deer and fermenting leaves, and part of a pb and j sandwich and coffee – no, wait it’s a mochachina – and OMG, raccoons! a coyote! Geese shit! Wow, this park rocks.

Boy: OMG, look at the light reflecting on the snow, and the way the trees are glistening, and when the branches bend they make this really soft whirring sound which creates a sort of percussive backdrop to the bird melody in the forefront. It’s so cold and moist and malleable under my feet, I bet this stuff makes kickass snow angels…yep, I’m right. And looking up little flurries are drifting off the branches and swirling in the wind, which tickles my face. And if I furrow a little deeper it’s like I’m in a tunnel, and my clothes get all soaked it’s like I’m swimming but colder.

Dog: This is so overwhelming, I can’t stand it!!

Mom: V, get up! C’mon! We’re going for a walk!

Dog: She’s focused on the kid, quick make a run for it!

Mom: Ruby, OMG no, come back here!

Boy: Great, the dog broke free, she’s distracted. Here’s my chance…

Mom: V! Come back! Help, somebody! My son!! ! My dog!!!

And I go running down the hill after V, who is rolling in the snow and giggling uncontrollably. He rolls all the way into a group of snowboarding teenagers – on closer look, they are skateboarding on snow. Nice kids, they stop and politely wait as I run into them and pull V away. He’s resistant and I half carry him up the hill, something I’ve repeatedly been told not to do by medical professionals who live in some sort of parallel universe with anatomical charts and sensible footwear. Don’t lift, don’t strain yourself, they always tell me. They can give you a diagnosis and some exercises to do, but they’re not out there in the trenches when you really need the help.

I get up to the top of the hill, where someone is holding Ruby by the leash as she strains to break free.

When I tell people what a smart dog she is, they usually nod, as if they understand: Oh yes, dogs can be so smart. They smell, they retrieve, they remember people they haven’t seen in years, they protect, they can save lives, lead the blind, heal the sick. Amazing creatures. In animals, intelligence means aware, observant, resourceful, astute sensory abilities, good problem solver.

When I say that V is really smart, on the other hand, people often question me, with a tone that can seem patronizing or pitying. What do you mean? Sure, an animal can be really smart, but how can you say that about a person who can barely talk, who is lacking in those qualities that separates humans from all other species? Yet my son is brilliant in a way, as smart as his older brother, it’s just harder to see.

Humans seem to need and thrive on the proximity of animals, Grandin argues, because in the process of becoming human we gave up something primal, and animals put us back in touch with that.

I get V into the car and change him into dry clothes, all the while holding the leash with the other hand. I comfort the child, cajole the dog (or is the other way around?) and somehow convince them both to have another go of it. We try again, and somehow are able to walk along the path to the dog park, both of them containing their joy, at least enough to walk in a straight line.

I let Ruby run around for a while, a fenced area that is like fine perfume, the scent lingering of hundreds of dogs who have tread this ground. I give V tiny pieces of chocolate for positive reinforcement, for waiting. Eventually he lies down in the snow, chocolate be damned, and rolls around in delight, singing in perfect pitch, with total recall, The Lion Sleeps Tonight, a song he once heard performed by a subway singer [we’ve never seenThe Lion King; to us it’s just a great song.] Then after a few minutes, I do my best impersonation of a person with authority, and we head back to the car, where I lift the boy into his seat and drag the dog against her will into the car.

Nice walk, I think, slumping behind the steering wheel. Rather exhausting for the one navigating the course, but an exhilarating experience for both of my passengers in ways I can only imagine.

About Me

Hi I’m J, also known as Joan. I’ve sporadically posted writing on Grace and Dirt, my blog, for the past decade. I chose the name of the blog to address my ongoing effort to cultivate grace and acceptance through a life that is messy and chaotic. I have two kids and the younger one has autism; but it is not a mom blog or an autism blog, although issues related to both often take center stage. I also write and care about other topics that put my life in a bigger context: social justice and public policy, how we find ways to support, include and value everyone, especially those who are less visible or more vulnerable; culture and religion or however else we find strength, meaning and resilience.

I’ve focused on that bigger context in my professional and creative life as a “slash person”: a researcher/writer/policy wonk/activist/ facilitator /performer committed to increasing social equity: things like making sure everyone has access to a quality education, gets fair representation in the criminal justice system, and has the opportunity for safe affordable housing and good health care.

My son V is at the more severe end of the autism spectrum. In addition to intelligence, humor, curiosity, a joyful disposition and perfect pitch – he has limited verbal and social skills, severe impulsivity and hyperactivity, sleep and sensory processing disorder. Constant hypervigilance is required for his safety and well-being. Consequently, I’ve added new slashes: caregiver/administrator/scheduler/advocate – that continue to open up my world and give me firsthand knowledge in new areas. Where throughout my career I have worked on behalf of underserved communities: people of color, new immigrant groups, low income neighborhoods, I’ve expanded my experience to encompass other underserved groups that my family is a part of based on age, disability and mental illness. I’ve also experienced how these categories intersect.

As a consultant I was hired for my expertise in community engagement and multi-sector partnership building. In my years as a caregiver I’ve become a first-hand expert on social isolation and loneliness and how that impacts health and well-being. While maintaining a blog hasn’t done much to curb my sense of isolation (which is why there have been such long lapses where the site lay dormant), I still think it’s a valuable tool for telling my story and opening a window to the stories of so many other wonderful people I’ve met on this journey, people who often remain in the shadows rather than in the spotlight. I continue to believe in the power of sharing our experiences to help increase understanding, acceptance and inclusion.

A New Chapter: The Cliffhanger Chronicles

My perspective right now is from the precipice of a daunting cliff which awaits our family in a few years. “Falling off the Cliff” in the disability community refers to what happens at age 21 or 22, when the guarantees of an education under IDEA [Individuals with Disabilities Act, a federal law that requires all students with disabilities are provided a free appropriate education] ends and young adults lose the specialized help and structure they’ve had for most of their lives, leaving parents scrambling to find services for their adult children. Research, what there is of it, paints a dreadful picture of what we face (most of these figures come from studies at Drexel Autism Institute and Johns Hopkins):

  • Of all the funding that goes to autism research less than 2% goes to adulthood or aging, even though that’s where individuals on the spectrum will spend most of their lives.
  • The surge in autism diagnoses for children has led to a huge increase – it’s been called a tsunami – in the number of young adults aging out of services every year, with overcrowding or long waiting lists for good programs that provide the basics to live a comfortable life: housing, job training, and social opportunities

    Of families trying to access services for a loved one post-cliff, a majority say that it takes great effort to find them appropriate services. Many parents often end up devoting most of their lives to fighting on behalf of their children. Nearly 30% of individuals never receive any services after high school ends.
  • It’s extremely difficult for most families to get the resources they need, especially middle- and lower-income families who need funding the most.
  • Services for the roughly 30% of individuals [like V] who require constant,ongoing supports are even more difficult to find.

I know this all sounds dire, and in many ways it is. It also can be hopeful, because for all the people who retreat or give up when faced with a crisis, there are many more who are empowered to come up with new solutions or fight for change. Our story and that of each affected family is unique, and yet there are common themes that cross boundaries among us and beyond, to other people with ongoing health or financial issues that add obstacles to finding the good life we all yearn for and deserve.

Thanks for listening to our story.