Feeds:
Posts
Comments

Archive for the ‘Uncategorized’ Category

painting pushpins

Posted in Uncategorized, tagged , , , , , , on November 14, 2025| Leave a Comment »

I live in my mother’s house. She is gone, and I am here, and it is still her house. Emerald carpets and old-fashioned curtains and heavy oak furniture. I took down all the Thomas Kinkade and gave away her plastic flower wreaths and fake potted plants. Now the kitchen window overlooking her backyard is filled with hawk and turkey feathers, hanging stained glass mushrooms, tucked-in drying roses from all the funerals. The sill has tiny trinkets aligned in a semblance I enjoy.

My mother would absolutely hate it — and I laugh and I laugh.

But I also feel kind of bad, because she decorated this place so carefully, cleaned every corner once a week, and took great care to match colors and place items in House Beautiful motifs.

We’re just so different. To make this place my own I’d need to rip out the carpets and put down flooring. I’d have to paint walls and take down curtain rods. Spend a lot of money. Make an effort I don’t have in me at the moment, for there is so much more to handle now.

I did hang my USA map on her living room wall (another turn-my-mother-in-the-grave move). The map hung in my old home, pushpins marking all the places I’ve visited (barring airline layover locations, which I don’t count), one pin at a time until I’ve seen every state, then maybe different parts of each. I can’t find the old pushpins so I bought new wood-looking ones. You can barely even see them against the map, though, so I am now the proud owner of 100 pushpins I’m not going to use. Do I buy new ones in a brighter color or just paint the ones I’ve got? Is it ridiculous to paint pushpins?

How many angels can dance on the head of an unwanted pushpin?

If I focus hard enough on such stupid tiny details of existence, perhaps the big ones won’t have room in my head.

Jonah is leaving Anderson soon for his new home in Ballston Spa. We don’t yet have a move-in date, which makes it difficult to manage visits to the home and other plans and preparations. I’m doing my best. Earlier this week I coordinated his first visit, which was stressful and a lot to plan, organize, and execute. 4 trips back and forth to Rhinebeck and more than a few tears later, we made it happen. We met some of the team who will be working for and with the house, we saw Jonah’s bedroom, and we enjoyed some snacks they thoughtfully had ready for us. We took a bunch of photos – front view of the house, Boo’s bedroom, the bathroom, living room, and kitchen – to create a social story so staff at Anderson can help him understand what’s happening. There’s a lot I can’t say about this because I’m still in the middle of scheduling transition meetings and asking questions about future visits plus the subsequent move, but suffice it to say I have some concerns.

The good news is Jonah did very well, partly because he loves car rides, and partly because he got to see Briana, (who joined us on her day off because Anderson wouldn’t facilitate her official participation), and partly because we went to Chili’s restaurant afterwards.

Going to Chili’s was huge, since I haven’t been able to take Boo out to eat in, well, forever. Not unless you include McDonalds, and even then it was literally 15 years ago last time we attempted it. At Chili’s we asked for a table away from other diners, and at one point Jonah wanted to get up, so Briana explained the geographical parameters of his exploration and he paced a small area, then sat like a champ and enjoyed his burger, fries, some of Briana’s mozzarella sticks (!), and even dessert. Our server was, blessedly, super kind and friendly, and the whole thing gave me hope for making similar outings happen in the future.

Jonah did have an aggression last night requiring a 2-3 person supine takedown. There’s no way to know for sure, but maybe he’s upset about the move. Maybe his ear hurts….he’s got a mass behind one ear that seems to have drained, but the doc is scheduling a CT scan for the 21st and then, depending on results, surgery to remove it after that. Maybe he was just pissed and didn’t want to take his night meds. As usual, we don’t really know.

I do know moving will almost certainly cause more violent behaviors and I hope to God the staff they hire can handle them safely. I’m planning to bring Jonah to the Ballston Spa police department to meet the cops who will inevitably be called to the home when staff can’t manage. I’m writing down questions, talking to other parents, researching recreational and other programs in the area, and campaigning hard for a day program guarantee. You have to be your child’s biggest advocate. I’m in a monthly zoom group with other parents of individuals who are in residential placements…they tell tales of woe and even horror stories regarding group homes – minor things like misplaced clothing, moderate issues like lack of day programming, and huge problems like abuse or overlooked health issues ballooning into catastrophic illnesses. Staff is short and pay is low. There are waiting lists for supports and services. Neglect seems to be the norm. Thank God Jonah will be so much closer to me and his father, so we can be present a lot.

I’m confused and scared by the process, though, and this first visit made it all too real.

I think about Boo moving so far from everything and everyone he knows. I yearn to stop the clock ticking down on the inevitable. I have a very hard time sleeping, getting up again, and dragging myself out of the house – even for Rock Voices and get-togethers and other things I know I’ll enjoy once I get there. The panic rises and it rises and it rises, relentlessly, but I can’t fall apart. I need to think clearly and plan carefully and communicate wisely. I’ll be back as everything unfolds.

In the meantime, there are pushpins to be painted. Every time I put one through the map and into my mother’s smooth white wall, I’ll say a prayer that this will all turn out so much better than I fear.

Please, and please, and please, and thank you in advance, dear God, protect my son.

Read Full Post »

losing lou

Posted in Uncategorized, tagged , , , , , , , on October 16, 2025| 4 Comments »

In memory of Laurie (Pagano) Williams, 12/28/1969 – 10/1/2025

My dear friend Laurie passed away on October 1, 2025 – two years to the day after my mom. Last week I attended her services and followed the family to Our Lady of Angels cemetery where her ashes are now inurned, at the Pagano site where her father and brother are already buried. From her gravesite it isn’t a far walk to my own cemetery plot, and Jonah’s – I bought them both when I prearranged our cremations a few years ago.

So you could say Laurie and I will be neighbors for eternity.

Hers was the fourth funeral of someone close to me since Mid-May. I’ve lost friends and family members before, but never in such quick succession, in this way that doesn’t allow me time to process any of the deaths individually but rather face a strange conglomerate of mortality. I’m mostly numb and having a very hard time feeling my feelings.

Writing about the person helps me, though, so I’m going to do that again. It’s hard to know how and I know it’ll never encapsulate her, but I have to try.

Laurie Pagano and I met in September of 1982, at the beginning of 8th grade at Shaker Junior High. I was a gangly, skinny girl who had just turned 13 and to make matters worse, was starting over at a brand new school. I knew no one at all. Laurie was still 12, four months younger – a cool kid in all black who immediately befriended me, took me under her wing, and kindly brought me into her friend circle. I don’t remember the day we met, but I know it didn’t take long for us to be fast friends, joined at the hip. I dubbed her “Lou” to set her apart from other Lauries we knew. In high school we embraced creativity and fun. Recording snippets of about a hundred songs into one “supersong” cassette tape, we were mash-up pioneers! We adored Boy George and Culture Club, sang along to classical music in fake opera style, sang The National Anthem in the school stairwells, basked under the tutelage of Ned Fleischer in chorus class, sat together in English, and got into a lot of mischief.

We passed hundreds of notes, then balled them up and burned them in our desks. We smoked cigarettes I stole from my mom. She numbed my right ear with snow in the girl’s bathroom, then pierced a second hole – this was a big deal at the time (and I can still wear an earring in it). We were busted smoking pot behind the school, went “car surfing” in the Latham Circle Mall parking lot, told our mothers we were sleeping over at one another’s houses and wandered the streets instead. We went to our first Grateful Dead show and became Deadheads together. We kept a tiny notebook full of silly sayings, inside jokes, and things that made us laugh until we cried. I still have it, and it still makes me smile.

Laurie was musically gifted. She was part of the Empire State Youth Orchestra and a special summer program at Skidmore College in Saratoga. In high school orchestra, she played viola with such skill that she was invited to audition at Juilliard. But then she got tendonitis and it was so severe she had surgery on both arms which destroyed her ability to play, and her dreams of playing professionally along with it. Around the same time, her periods were so painful she was taken to the hospital more than once by ambulance from school. She’d be bent double, gasping and crying in pain. Normally she handled pain so well that when this happened it scared the hell out of me.

A human embodiment of the expression “pull yourself up by your bootstraps,” Laurie brushed herself off and carried on.

She married young and had her son Mark at age 20. Her little family embraced their love of the Dead, went on whole tours, and saw hundreds of shows together. I envied it so much, but I was at college in Oneonta and couldn’t risk my father’s wrath by dropping out to join them. I’m glad of it now, I suppose; that diploma got my foot in more than a few of life’s doors. At the time, though, I yearned to leave school behind and follow the Dead with Lou.

We lived together for a while, along with our friend Gina, when Laurie divorced and Mark was about 5. She was a singer and bongo/djembe drummer in a bunch of different bands, including a duo with our friend Chrys called Chrysalis Lore. A natural and confident performer, her voice was a combination of Janis Joplin and Boy George – a little rasp and a lot of grit. I applauded from the audience and loved watching her succeed.

Though she worked for a few different places, eventually she studied bookkeeping and bravely built her own business, bad-ass style. She saved her money and bought a house, but something like 3 weeks later, it burned to the ground when a fire at the neighbor’s home spread to hers. Although she and Mark got out okay, all their stuff was gone. Tenacious and undeterred, Laurie built a new home on the lot and started over again with nothing. Her little brother Tom, who she adored, passed away suddenly around this time too, and it killed her to lose him. Still she didn’t complain.

When Jonah was little and first started school at Wildwood, I ignored the “never work for a friend” life advice and worked part-time for her doing random office stuff. It’s a long story but basically we got in a fight and I quit, and for more than a decade starting in the mid-aughts, we didn’t talk. I told myself I didn’t miss her, but I did. Finally, I sent her a card with an apology, she called me, we reconciled, and for the next several years I had my friend again.

During the time we didn’t speak, she lost her father and had been fighting Crohn’s disease. Her poor body never really recovered after that. Laurie battled one thing after another – surgeries, medical procedures, exhaustion, insomnia, brain fog, and always the pain. A whole lot of pain. Still she didn’t complain. She fought even the idea of going on disability because she was strong and independent and determined, and she worked until she absolutely physically couldn’t do it anymore. She used a cane to get around and eventually, mostly, a wheelchair.

We found new ways to have fun. We went to movies and out to dinner and I wheeled her around the mall, where we’d explore Hilton’s Music store and buy stupid amounts of candy at Five Below. We saw a free outdoor big band show at the Crossings and watched the boomers dancing. I said “hell, we can dance too,” and wheeled her around in small weaving circles until we were both dizzy and laughing. We saw Culture Club at the NY State Fair under a big rainbow (they were amazing!) and went on a weekend trip to the Renaissance Faire, decked out in period garb. We went to a taste-along showing of Willie Wonka and the Chocolate Factory at Proctor’s.

Then we joined Rock Voices in the Summer of Queen (thanks to my friend KP, whose May 2024 text, “I have something that’s right up your alley” changed my life). On audition night with the whole chorus watching, I tried out for a solo in the song “You’re My Best Friend” – and I sang it directly to Lou. A few people said they were so touched by that it made them cry. I won the first half of the solo and Lou grinned proudly as I sang it on stage during our first concert together. For two more seasons we sang together, and she won a solo, too…the Bruce Springsteen part of We Are the World. It would be the last time she sang into a microphone on stage. Every Monday and Tuesday I picked her up and we ate dinner with the early birds at different diners, then usually parked at a trailhead or random parking lot and practiced our songs before heading to rehearsal – Mondays in Saratoga and Tuesdays in Colonie. We both lived for these days, always sat together in chorus, and wrote notes back and forth, stifling giggles…just like in high school.

It didn’t last long enough. During rehearsal one night she noticed a swollen area on her neck. It was the beginning of the end of our time together singing. She was diagnosed with throat cancer and endured a marathon surgery to remove the cancer, along with her voice box, and reconstruct her esophagus. After that she breathed through a tracheostomy hole and communicated by writing notes on a dry erase board.

She promised that next season she’d come with me to Rock Voices anyway, voice box or no, and joked she’d be my “service animal.” Her health declined quickly after that, though, and she wasn’t able to return. Everyone at Rock Voices missed her and asked about her every week. The news was never good, and I hated to tell it. After that, I almost quit the group altogether. I finally decided it would help my mental health to stick with it, since the singing and camaraderie are like medicine. Still, it’s so hard to go to rehearsals without her.

I’m happy to say this season of Rock Vouces is dedicated to her memory.

Laurie fought through and endured more than anyone I’ve ever known. She never lost her sense of humor, integrity, or ability to face each hurdle with proud persistence. I’m grateful we met, and especially grateful we reconnected and stayed close friends until the end.

Goodbye, Lou. I will remember you – and carry you, singing, always in my heart.

Read Full Post »

no sugar tonight

Posted in Uncategorized, tagged , on September 28, 2025| 7 Comments »

Back when I called my blog Normal is a Dryer Setting, its tagline was “autism sans sugar coating.” I hold so much back about Boo. Am I sugar coating by omission? If I don’t say the things, will it make them not be happening? If I don’t type the words, will it make them not be true?

I couldn’t visit him today because I’m sick and don’t want to bring it to him or to anyone else, but there was relief in the not-visiting. Last week he was a pain in the ass. He wants to hug me but he’s really trying to press himself against me in a sexual way, and I know this and I want to hug him but I just want a regular hug but I can’t have a regular hug because my son doesn’t understand his normal 23-year-old urges and what they mean or how to handle them. He says “the boobie” and shrieks with laughter and tries to put his hand on my chest, over and over, his laughing intensifying. Sometimes I pretend I don’t know what he’s doing and sometimes I say “no,” and move his hand away, and sometimes I say whole sentences like “that’s inappropriate, Jonah.” He wants to play the unspeakably filthy song “You Can Do It” by Ice Cube at top volume and he has no idea what they’re saying, he just likes the beat I guess but fuck does it have to be his new favorite song right now?

There’s no rulebook for any of this.

At the disability conference I attended last week, one session focused on the prevention of sexual violence against individuals with I/DD (intellectual and developmental disabilities) – and this session, like all the sessions at all the disability conferences, focused solely on higher-functioning people with I/DD. The presenter spoke about problems like overprotection and infantilization and afterwards I spoke to her and politely asked why she didn’t speak about the vast and very vulnerable population of people with severe I/DD – those for whom UNDERprotection and ADULTification are the much greater issues. She was kind and she listened and I don’t know if she was giving me lip-service when she said they were always looking for feedback and they appreciate my perspective but my question is how the fuck can you do a whole class about sexual violence against individuals with I/DD and leave out the very people who are the most likely to be abused because they can’t tell you what’s happening?

Are you kidding me?

I wrote this poem last year for the April “Dewdrop Inn” at writing.com where I have a portfolio, it is a month of poems, one a day, prompted, and all of mine go dark or seem to anyway but I am reminded of this one I called My Son is Safe (the prompt was Safety) when all this fear went through my head unbidden.

My Son is Safe
Because the traffic light turned green
before I made it to the intersection

and because I chanted sixty times a mantra
my late friend Gina taught me years ago
and at the end of it I lit a stick of sage

and because the magic 8 ball offered up
an answer: it is certain

and because St. Jude of hopeless causes
heard my prayer and promised a protection
(not so hopeless, right? – if he can help)

and because my mood ring turned the blue
of confidence, of triumph, of a gain

and because I found a penny in the rain
the day we dropped him off
and drove away.

A few months ago the school called and told me Boo had a major incident. “Jonah’s okay,” they always start off with, because they know when a parent sees the area code they panic because it’s an unexpected phone call from the place where their kid lives, and because so many times it’s bad news, and it’s bad news today even though “he’s okay,” and the news this day is that Jonah was taking too long in the bathroom at school and when they went to check on him he was playing with his shit. He was sitting on the floor with his hand in the toilet and there was shit all over the place – the stall, the toilet, his face, the mirror, his clothes – he was playing with his shit and he was laughing and they had to somehow clean the area and bring him into the gym where there is a shower, these people who make God-knows-what an hour, not enough, not even close to the realm of enough, and they don’t know why he did it but to the best of my knowledge he hasn’t shit-smeared since his days at Wildwood before we had to bring him to live at Anderson, and I don’t know what it means and I don’t know what to do about it.

A few weeks later the house called and told me Boo had a major incident. “Jonah’s okay,” they started off with, but he got up in the middle of the night and he destroyed the bathroom. He ripped the soap dispensers off the sink and tore the towel bar off and used it to bash at the windows and the mirror and to try to bust into the office where the staff had locked themselves in while they called for help. Help came and they cleaned up his cuts and calmed him down and got him to go back to bed and I guess fixed up the bathroom but then the next night the house called and told me Boo had another major incident.

“Jonah’s okay,” they started off, but he attacked two staff, two caregivers, and they almost got away, they ran around a table but he was faster and he got them anyway and somebody called for help and they weren’t very specific about how badly they were hurt but I guess they were okay, no one had to go to the hospital or anything, so it was okay and I didn’t ask for more details because I didn’t want to know more details and the next time I talk to these people I tell them how sorry I am and I apologize for Jonah and they say they understand he can’t help it and they somehow keep working there but I know a bunch of them are terrified of my son.

And all I can think is at Anderson they can call for help on the walkie-talkie and people will come running from one of the other houses, bigger people and stronger people and more people, but at the new house they will be calling 911, the police will come and handle it, and I’m sure they won’t get there even close to as fast, and God knows what they’re going to do when they get there, and I think how this isn’t a matter of if but of when it will happen, because if he’s having all these fucked up behaviors now, can I imagine what will happen when he’s taken away from everything and everyone he’s known for 14 years and plunked down into a house on a street in a neighborhood?

Do I have the energy to imagine it? Do I want to talk about it here? Do I want to go to another fucking disability conference and hear them talk about self-direction and self-advocacy and completely ignore the fact that people like Jonah who have problems like this even exist?

And then I had to have surgery and then I had to put my cat to sleep and then I had to have another surgery and the second one didn’t work and then all the people started dying and now I’m sick and feeling relief I didn’t see my son today…and I’m sorry everyone but it’s a lot and it’s too much sometimes and there are days I do not think I can keep going. And now the country is a torn up mess of anger and murder and hate, a shooting then another shooting and another, tragedy on tragedy, and all we do is blame the other side, it’s all their fault, they’re evil, must be stopped, and yes I am in therapy but it’s a new therapist and we haven’t even scratched the surface yet, I lost 3 therapists in a year if you can believe it, they kept quitting, I guess for better therapy gigs and so I keep having to go back to the beginning, choosing ways to introduce my certain kind of crazy. I carved out a vacation in Panama City Beach Florida, it’s the place me and my sister Barbara always go every year, but this year I had her ashes with me instead of her, and didn’t feel I could relax for even a minute, and strangely I held on to the ashes until almost the last day, I couldn’t bring myself to do it, and when I let them go into the ocean some dolphins came which was cool but the whole thing sucked anyway and then it was over and here I was again at home or more accurately living here in my mother’s home.

I’m using K (klonopin) to slam myself down to sleep which is funny because it’s anti-anxiety but I can’t use it that way because I need it now to slam myself down to sleep. Bedtime is the best time of the day, hands down; I play a Little House on the Prairie audio book and sometimes even wait until it’s dark before I take the K and if I wake in the night I hope with all my heart that it’s only 1am or 3am, the earlier the better because it means more sleep, escape, more bed, less life, less panic and loss and pain, and I don’t want to tell people because my God I’m all the time complaining, worried, scared, dreading panicked tired blah blah blah I can’t stand myself anymore so how the hell would I expect anyone else to stand me?

I’m pretty good at masking, though, mostly, and I have good times and I have very good friends and I have fun and we smile and laugh. And I’ll be okay in the morning. Or okay enough. I’ll be a weeble, and they don’t fall down.

I am wobbling but I won’t fall down.

Read Full Post »

the art of losing

Posted in Anderson School, autism, Elizabeth Bishop, music, Rock Voices, Uncategorized, tagged , , , , on September 27, 2025| 6 Comments »

I don’t have a lot to say, and I have too much to say, and I’m sick, and I’m sick of myself – and so very tired of this messed up year. There’s no news about Jonah’s move. We don’t even have a transition plan yet, or a caseworker. At least Andy and I were able to tour the house and see Jonah’s bedroom and the space where he’ll be living. A month ago they told us the house would be open in 6 weeks but I’m not sure what that means for Boo. We wanted him to be one of the first to move in and I need to contact OPWDD to ask for an update. Life keeps getting in the way, though, with challenges and unrelenting loss and sadness.

One bright spot was the annual Dutchess County Fair; for the third year in a row, I met Jonah, his friends, and the staff to enjoy the rides and animals and food. This year we were even able to visit the cows without embarrassing incident. Jonah was content to have his picture taken next to them and mooooove on.

Also, it was a blessedly cool day and we stayed with the group, which made it a lot easier and less stressful. I wish I hadn’t persuaded him to get on the rides, though. As soon as we were settled on the Ferris wheel, he grabbed each of my hands in his and told me “it’s okay. It’s okay. It’s okay.” I smiled at him and said “yes, bunny, it IS okay” – but I felt bad. He bravely endured the brief spin, but after that I didn’t encourage him to ride anything else.

The only ride he seemed to truly enjoy was the bumper cars, both of us in one car so I could brake and help him steer. It will probably be the last time we go to the Dutchess County Fair together. Maybe the Saratoga County Fair next year? We won’t have a group of caregivers to help us, so it may not be possible.

I don’t know what, exactly, will be possible for Boo in this new house, in this new life. He’ll be losing so many people, so many things.

I’ve lost so many people this year, too – and am about to lose yet another, my friend Laurie, who has been through so much suffering and is now nearing the end of her life. I want to call Father Noone to talk about it. I want to call my sister. Ironically, the people I most want to talk to about it are the ones who are dead. I even want to call my mother, now two years gone – “mommy,” I want to cry, like a lost little girl. It’s hard not to keep everyone left at arm’s length in an attempt to prevent the pain of more loss, though I know that’s not the solution.

I think of this poem I read in class during my days as an English major at SUNY Oneonta.

One Art
By Elizabeth Bishop
The art of losing isn’t hard to master;
so many things seem filled with the intent
to be lost that their loss is no disaster.

Lose something every day. Accept the fluster
of lost door keys, the hour badly spent.
The art of losing isn’t hard to master.

Then practice losing farther, losing faster:
places, and names, and where it was you meant
to travel. None of these will bring disaster.

I lost my mother’s watch. And look! my last, or
next-to-last, of three loved houses went.
The art of losing isn’t hard to master.

I lost two cities, lovely ones. And, vaster,
some realms I owned, two rivers, a continent.
I miss them, but it wasn’t a disaster.

—Even losing you (the joking voice, a gesture
I love) I shan’t have lied. It’s evident
the art of losing’s not too hard to master
though it may look like (Write it!) like disaster.

It does look like disaster right now, and yet I understand what she is saying. I understand it so much more from the perspective of middle age than I did at 20. You reach a point where it all becomes a normalcy. I lost the ability to eat what I want without consequence, then to look 10 years younger without even trying…to look around me and see the same loved ones at every holiday gathering, to count on friends and family being there year after year. To enjoy a certain level of wellness, to depend on an easy bounce-back from injury or illness or sleepless night.

There is no longer the comfortable assumption of a generation between myself and death. Relativity is real, and everything speeds up in direct proportion to one’s age. It’s a humbling thing. My father will be 87 this year, and when I talk to him every morning he tells these truths as well. Most of the friends and relatives from his “silent” generation are gone. He seems to have mastered the art of losing, though I know there are days he struggles to accept it.

As for Boo, I will fight the losing. He’s just 23, a young man with a future I can attempt to fill with all the things he loves. I can do my best to make his life a little better at every turn and through every change. In the meantime I can practice, like Elizabeth Bishop says, “losing farther, losing faster: places and names” – for it won’t let up, not for any of us, and we have to carry on.

I can remove my focus from the losing and place it on gratitude for all the things and people I still have. I can join Rock Voices again, and even though I won’t have my friend Laurie with me, I know she’ll somehow be there with me anyway. I’ll hear her singing and laughing next to me. I know I can. I’ve got to. The alternative is sinking into depression, and that, my friends, is something I really do not want to do.

Have a blessed, beautiful beginning of autumn, everyone. I’ll be back soon!

Read Full Post »

her sweet baby sister

Posted in Uncategorized, tagged , , , , on August 1, 2025| 3 Comments »

In loving memory of Barbara L. Audi (November 4, 1960 – July 25, 2025)

I begin to write, walk away, come back, edit, rephrase. I want to say the right things to honor my sister – but what can I say to paint the picture skillfully enough? I can only hope her amazing soul somehow shines through my words. I’ll be editing this a lot until I’m happy with what I say and how I say it.

My name is Amy, but the name on my original birth certificate is Christina Ann Sweet. I didn’t know it, or have access to that birth certificate, until early 2017 when I found my biological family. In an instant I went from an only child to the youngest of 5 on my birth mother’s side and the oldest of 3 on my birth father’s side.

This was a lot to process.

The first sibling I met was Barbara, third born of our mother, Marilyn. Barbara was 9 years older than me and lived just 20 minutes away for most of our lives, though of course neither of us knew it.

When I worked up the courage to call her for the first time, her answering machine picked up. Barb’s husband Mickey heard my brief explanation on the message, and in shock, handed the phone to Barbara. The minute she understood this was real, she asked, “how soon can you get here?”

I drove there right quick and she immediately threw her skinny arms around me in a tight hug. “My sweet baby sister!” she cried joyfully, holding on as though I’d run away if she let go. She had been looking for me – and wanting her “baby sister” – since I was born but not brought home. Of all possible reactions to my sudden appearance, this is the last one I’d imagined.

And yet here we were, so obviously sisters. Same lanky frame, same facial features, same mannerisms. For the first time in my life I resembled a family member…one who loved me unconditionally right from the get-go. Amazing.

For the next 8 and a half years, my big sister Barb was my friend, confidant, partner in crime, and biggest fan.

Barb welcomed me into her home and family, wholly and with no hesitation. We discovered we had very similar taste in music, clothes, activities, you name it.

The first time she walked me around her property, in fact, she paused by a creek and asked sheepishly, “is it weird if I want to play with rocks right now?” “Wait, what?” I cried. “I play with rocks! Let’s play with rocks!” And so we did, like two little kids.

When I visited, I nearly always brought along glue sticks and magazines, and we’d make collages together, telling Alexa to play Crosby Stills and Nash, Van Morrison, CCR, or the Eagles. She preferred the Rolling Stones and I, the Beatles — but we loved so many of the same things that I began to understand how we humans are definitely products of both nature and nurture.

I got to meet our older brother, Philip, the next summer when we planned a stay at the beach nearest him; he lived in Enterprise, Alabama at the time, so I drew a line from there down to the ocean and hit Panama City Beach, Florida, on the panhandle. Barbara and I flew down, he drove to us, and we had a wonderful reunion-vacation together. We loved it so much that she and I vacationed there together 3 more times, creating shell pictures, adopting beach cats, and making up stories about the people passing by our porch.

In almost every photo I have of us, Barb is either holding on to me, looking at me lovingly, or both.

Sometimes she would take my hand and simply say “I just adore you.”

I basked in her love, maybe even took for granted that it – and she – would always be there.

Though she never met Jonah, she always asked about him and she kept a photo of him on her fridge.

My big sister was ornery and obstinate, loving and accepting. Her laugh was loud and infectious, and she was all kinds of fun. She was imaginative, inventive, and incredibly kind. She rescued animals and people alike, collecting strays and hearts along the way. She exemplified her maiden name, Sweet, in everything she did.

She even found four leaf clovers all the time (and proved this to me one day by finding 2 in less than 5 minutes)! She enjoyed antiques and pottery and plants, and she loved her children, grandchildren, father, friends, and family so very much. She made friends with strangers everywhere she went in a way I’ve never witnessed but always admired. She was a strong, free spirit and a bright, lovely soul. Barbara was nothing less than a gift from God, and I’m so grateful I had her for as long as I did.

The services are tomorrow. Her daughter Robin and I plan to wear colorful dresses to celebrate her life. Barb’s favorite color was yellow – the color of warm sunshine, sweet honey, sour lemons (a flavor we both love) and so very many different kinds of beautiful birds and flowers.

So shine on, sweet sister. I will miss you and love you always.

Read Full Post »

let’s make a deal

Posted in Uncategorized, tagged , , on July 7, 2025| 4 Comments »

Two years ago Jonah and I attended the Anderson prom, which I thought would be his only prom – but when they told me it was actually a biennial event, I was excited to go again and be Boo’s “date.” He and his peeps got to ride in a party bus to the decorated recreation center pavilion, where a DJ spun tunes and everyone celebrated together. He’s more walker than dancer, so we mostly promenaded in and around the dance floor, hand (and Gatorade) in hand. They served buffet dinner after a while and I was kind of amazed at how well everyone waited in line for their food. Even Boo!

Maybe the best part about the prom was the camaraderie and understanding among the families and friends attending. At any given time, one of the students might lie on the ground, screech, run in circles, remove clothing, clutch the DJ’s arm, etc. Really anything that might be embarrassing or inappropriate at a regular prom was fair game here. Yet no one endured stares or judgement in this very safe space, because we’re all in this together.

I’m so grateful to Briana and everyone at Anderson who helped plan, decorate, serve, supervise, and work hard so these youngsters could participate in a “normal” school activity.

I’m even more grateful now that we are nearing the end of Jonah’s time at Anderson, for many of the privileges he enjoys there will also end once he leaves. For the last 14 years, he’s lived in a 100+ acre gated campus environment with a school right on the grounds.  He’s got access to an inground pool, recreation center with adaptive play equipment, a school/day program, all kinds of activities, and a house full of people who already know and love him.  He has dozens of sets of eyes on him every day to ensure his safety and well being. He enjoys events on campus like the prom, easter egg hunts, trick-or-treating, Christmas tree lighting, and other seasonal celebrations. He gets to participate in outings like autism walks, trips to the Dutchess County fair, and a day at the waterpark. When he goes for a walk on campus, staff with him have walkie talkies and can call for quick help/backup if Jonah has an aggressive episode.

After Anderson, he’ll have very little of what he has there and there’s nothing I can do about that. There are few campus-like environments for adults.  The only one I know about is in Sullivan County, even further away from his father and me than he is now. If I had the money, I’d build one right here in the Capital District and oversee its construction, staffing, and operation. It would have the best of everything, of course.

I thought we could fly under the radar forever at Anderson, but we can’t. So Boo will be living in a supervised IRA (individualized residential alternative), a traditional family-style group home with 24-hour staff support and supervision. There’s one in Ballston Spa (which is about an hour closer than Anderson) and OPWDD has officially offered us placement.

Do we take it? Is there a better option? What happens if we say no?

Normally I could at least tour the house and talk to staff. I could get a read on the well-being and happiness of the residents. I could find out what their schedule is like and what kind of day program is available. I could talk to the parents/loved ones of individuals who already live there and ask pointed questions. But this house is empty. The previous residents, I’m told, had ambulatory needs that couldn’t be met there, so they were moved out. The house has been vacant since December. That means I can’t tour anything but an empty space and I can’t rely on anyone’s story or lived experience.

I went into panic mode: I am suddenly on an episode of Let’s Make a Deal and Monty Hall himself is offering three curtains, behind each of which is a prize. First I’m offered a dining room set. Then I have the choice of keeping it or trying one of the other two curtains. Behind one of the other curtains is a Cadillac; behind the other is an elderly goat chewing on a bale of hay. My choice is final.

Is this IRA the dining room set or the Cadillac? Could it be the goat? How to choose? After all, it’s not a game show. It’s Jonah’s future. Barring a major problem, he will live there for the rest of his life. How can we have so little information with which to move forward?

First, I emailed any person, place, or organization I could think of who might be able to offer guidance. I heard lots of things. More than once I was told there are thousands of individuals awaiting placements like the one we’ve been offered, and people wait for years in situations far less comfortable than Anderson. Some end up living in the hospital because they have nowhere to go. We were advised to take the placement.

I requested a zoom meeting during which I could ask questions, and Andy came up with other questions I didn’t think of. I asked Briana and her supervisor from Anderson to be there too. During the meeting, someone from the IRA team was at the house and showed video by walking around with their phone, pointing out the living areas and bedrooms. Aside from a dedicated office space on the basement floor, by all appearances it is a normal looking house on a 30-mph road with sidewalks in a neighborhood. It does not have a pool, or a backyard to speak of (the back is a paved area for cars). There’s a small patch of woods between the house and the one behind it. A wrought-iron fence forms a short path area in the front that appears to have a locked gate, with enough room for some small porch furniture.

I asked how many people would be living there, and what’s the ratio of staff to residents, and how they’re trained, and how visitations work, and how transitioning from Anderson to the new house will work, and how he’ll get his medications and go to the doctor and eat food he enjoys, and how he’ll be able to go for a walk or to the local park or to the town pool – and a whole host of other things. I held back tears that threatened to come every time I opened my mouth to speak. I held back the weeping, the screaming, the pleading demanding convincing insisting arguing…I held it all back and I forced myself to breathe and I forced myself to stay calm. I told them no matter how many questions I was allowed to ask, there would always be more questions. They assured me I could ask them all, that there would be many more meetings, that this would not be like ripping off a band aid but rather a slow and deliberate process. They really did try to be reassuring and kind. They really did seem to understand my worries and concerns.

The last thing I asked was how quickly we needed to make the decision. The answer was not immediately but soon. And so we decided to take the placement. Just this morning, in what felt like a monumental act, I sent an email to the representative at OPWDD telling her this. She emailed back almost immediately:

That’s great news!  I was going to send you a list of people on Jonah’s team today.  Also, there will be more meetings. Thanks so much for your help and patience.  I know that the process can be difficult.

The process is difficult indeed, already, somehow – and nothing’s even happened yet.

I think of Guster’s song Come Downstairs and Say Hello and its wonderful instruction:

Be calm. Be brave. It’ll be OK.

It will be OK, because I need to believe it in a way I’ve never needed to believe anything before, if you don’t count August 16, 2011, the day he left our home to live at Anderson.

I’m planning to ask a lot more questions (and please feel free to say what you would ask). I’ll research the community and its programs and services for people with disabilities. I’ll contact the local fire and police departments to ask about emergency preparedness plans for his house. I’ll tell OPWDD to give my contact information to all the other families of people who’ll be living there, since I can’t legally ask for theirs. I’ll paint his room an ocean blue and stick glow-in-the-dark constellations on his ceiling.

I’ll see if I can win him that Cadillac.

Read Full Post »

father david e noone

Posted in Uncategorized, tagged , , , , on June 22, 2025| 4 Comments »

Father David E. Noone – pronounced “noon,” as in the apex of a day, passed away on June 15 at the age of 83; appropriately, I suppose, on Father’s Day. He was my priest, boss, mentor, and friend. I found out he died a few minutes before driving to another former boss & friend‘s funeral…bizarrely terrible timing.

He wrote his own beautiful obituary, but I had the wisdom not to read it until I was back home again, for I couldn’t have handled it just then.

For several years (my mid-20s to early 30s), I worked as church secretary at St. Francis de Sales Church (now called Christ Our Light) where he was the pastor. When I got the job, I think I was 25; he would have been 52 or 53. It was a parent-child age difference, so it made sense when eventually I came to love him almost as a daughter loves her dad.

We clicked right away. He was kind and curious, interested and interesting. We had the same sense of humor and laughed together a lot, and he managed the office and its workers well. He made me want to do a good job. I took care to deliver his phone messages quickly and always ensured he had Equal for his coffee. I attended weekly (sometimes daily) Mass, admittedly a lot more than if it had been any other priest presiding.

As a priest and a person Father Noone was welcoming, humble, God-loving, and moral. A man of integrity, he spoke thoughtfully and listened with real empathy. Every week he worked hard on insightful homilies, then delivered them with a storyteller’s skill.

I admired his spirituality and his diplomacy – the impressive way he interacted with all manner of people who crossed his path on any given day. Father saw people on the best and the worst days of their lives, but he showed up in a special way for the really hard stuff. Because he was so gifted at helping people through grief, they often called him immediately after a death – sometimes even before the police, coroner, or family members. More than once he was first on the scene, post-suicide. Tragic accident. Fatal heart attack. He never complained about what he witnessed or how it must have affected him, but I think it carved a tender place in his soul that ached sometimes.

He moved through this world like he truly cared about all its inhabitants, as evidenced by everything about him, all the lives he touched through his churches and his work with Friends of Fontaine, Unbound, and more ministries and work I never knew about. Work, probably, nobody ever knew about. He was never one to brag.

Father was one of the only people I ever truly confided in about a lot of things, and I was especially grateful he allowed me to open up raw and painful conversations about Jonah. He married Andy and me and baptized Boo, so he knew our story from its inception and he watched it all fall apart. He did not berate me for despairing, nor encourage me to look on the bright side, nor offer any platitudes. He knew when to be silent and when to speak, what I needed to hear and exactly how to say it.

And when we spoke for the last time about a month ago, it was only after he listened to my problems that he admitted his own. He knew he was probably dying, and he told me so. We both cried and we talked about all kinds of things, and I told him I loved him. “I love you too,” he said. I’m so grateful for that conversation.

I’m so grateful for his presence in my life.

Goodbye, dear Father. I will miss you always.

Read Full Post »

fortunate son

Posted in Uncategorized, tagged on April 30, 2025| 2 Comments »

Jonah turned 23 on March 7. In June, it makes 2 years since he officially graduated from Anderson, and that means time for a move to a group home – except none were available and no agencies were considering him, for whatever the reason. I guess I got a little complacent, figuring he was “flying under the radar,” Survivor-style. I love the people who work with him right where he is, and was in no rush to move him off campus to God-knows-where. We are fortunate to have such wonderful people caring for Boo. A few times I was informed that an agency was “looking” at Jonah, but nothing ever came of it, so when they told me this again recently, I all but ignored it.

But two weeks ago, without warning or fanfare, I got this email from someone at OPWDD:

Please call me to discuss a residential opportunity for Jonah in Saratoga County (Capital District) – see below information:

“No move-in date has been determined. The home we are looking at for Jonah is our IRA (Individualized Residential Alternative) that is located in Ballston Spa NY. The home is currently vacant, so we are working on getting a staffing package together to be able to support admissions into this home, which is why I do not have a date at this time. There are currently no other individuals living at this home. We expect other age out individuals to be moving in around the same time or shortly after Jonah. It is a ranch style home with 5 bedrooms”.

To say I panicked would be the understatement of the year. Would I love to have Jonah a whole hour closer to me? Hell yes. But wow, this is big. There’s so much to consider. When I called to ask about this placement, they assured me that nothing would happen soon. There will be a bunch of meetings first, and Andy and I can make sure the situation is right and the transition as smooth as possible. Of course I have a million questions — more about those soon. I just wanted to share the news because I haven’t written in so long. There is a lot to say about why, but that will have to wait as well. For now just know he’s doing well and there may be big changes ahead!

Happy Spring everyone. I’ll be back soon with more about all of it.

In the meantime, if you’re the praying sort, please say one for the best possible outcome for Boo.

Read Full Post »

trendsetter

Posted in Uncategorized on January 11, 2025| 2 Comments »

It seems Jonah is a trendsetter with his cow-cuddling – just look at this BBC article I saw the other day:

Why a Dutch Wellness Trend is Taking the World By Storm https://www.bbc.com/reel/video/p08kzw6t/why-a-dutch-wellness-trend-is-taking-the-world-by-storm

I guess Boo is on to something. Maybe there’s a local farm that would let me bring Jonah over to lay next to one of their cows on a regular basis. (Talk about sentences I never thought I’d type!)

I’m going to join a zoom today to hear the State of Anderson Address given by Patrick Paul, CEO, which will include a discussion of the major challenges and wins, upcoming projects and initiatives, and financial status of the school. There has been a lot going on and I’m not going to get into it here – at least not today.

I see Jonah just about every Sunday for our lunch and campus walk, complete with music and usually a Reese’s peanut butter cup or two. As usual, he is impervious to the cold but seems resigned to wearing his winter jacket and even putting the hood on. When he was little he absolutely refused all manner of hats and hoods, so this is a definite improvement.

He did have a violent episode several weeks ago when he was walking the campus with Andy, so now we both carry walkie-talkies on our visits and can call for help if necessary. A few years ago my mental state would have crashed after this incident, at the hope that rises when he goes any length of time without an aggressive behavior and the resulting despair when it happens yet again. I’m not sure what has changed – maybe I have come to understand the cycle has not stopped, may never stop, that he may not “grow out of” this. Andy has always seemed more resigned to this cycle, even when he is the recipient of the aggression. I am slow to accept the inconvenient truths and could learn a thing or two from the way Jonah’s father accepts the situation, loving his son with an unwavering steadiness despite all the uncertainty and pain.

Tonight is our Rock Voices concert at the Egg. It’s almost sold out, and I am looking forward to performing with my chorus peeps. Rock Voices has saved me, and my friend Laurie who sings with me, in so many ways. As my boss Denise says, it’s hard to be depressed when you’re singing. Amen, Denise. Here we go…

Happy New Year to you all – may 2025 be full of love and laughter…and music, always music.

Read Full Post »

closed

Posted in Anderson School, behavior, The Anderson School for Autism, Uncategorized on November 1, 2024| 5 Comments »

When Jonah was little and wanted to do something, we’d tell him it was either “open” or “closed.” He seemed to understand this better than any explanation about why he couldn’t go to park, see grandma, or eat another cookie; the desired person, place, or thing was simply “closed.”

Today I closed on the home Andy and I bought in December of 2000, where Jonah grew up from the time he was born until we dropped him off at Anderson to learn and live. I know he remembers the house, because he remembers everything, even people’s names he’s only met once, years ago. I’m sad to say it, Boo, but home is closed.

When people ask why I didn’t sell my mother’s house and live in my own home again, I joke that her house is nicer, that I’d never be able to afford it if she hadn’t died. But the truth is I can’t go back. I can’t live there again with all the ghosts of celebrations and holidays, of joys and tragedies, things to remember and revisit and regret. And so I am here, in this too-big house still mostly decorated in my mother’s taste, in carpets and colors nothing like those I would have chosen. I suppose I can leave here too and find my own place and my own space in the world, but I am waiting for Boo – for where he will be when he moves to adult placement. Because I don’t know when or where that will be, here I stay, putting up pictures and putting down throw rugs to make the place more mine, for now.

When I am feeling lonely, scared, or sad, I look at photos and video of Happy Boo, for there are so many captured smiles and fun and laughter, mostly thanks to Briana and Siara and the folks at his school.

The video in particular is all I need to feel 100% better when I’m feeling down. He’d never been to a water park before; in the past, his aggressive behaviors precluded his going on outings, especially lengthy ones…but this year Briana pushed to have him join the others. He absolutely adored it. I love his raspy euphoric laughter and the obvious happiness brimming over in Briana’s voice as she films and calls to him. Sometimes I watch it over and over. It fills me with happiness too.

There’s no joy like Boo joy!

I hope his joy makes you smile. And I hope this autumn brings you joy as well.

Read Full Post »

Older Posts »