Well I did say in the last post that this would be a big year — but I had no idea just how big.

A few days after I last wrote, my mother fell. She didn’t answer when I called her that morning, which was weird enough – but when she didn’t call back after I’d left a message, I knew something was wrong. So I drove over and found her lying on the floor of her bathroom, frustrated and hurting. No bones were broken, so over the course of a few hours I helped her up and back into bed (she absolutely refused to have an ambulance come). I’ve been living here ever since, taking care of things and carving out a space for myself in this sea of fake flower swags and Thomas Kinkade. As if to illustrate Murphy’s Law, the Life Alert emergency response system I’d ordered arrived on her doorstep later that same day.

And so we began a new journey, on a foggy road, with no clear path ahead and random raging storms. My mother will not accept nursing/medical care, so we’re kind of flying blind. She isn’t breathing well and she’s very shaky, but she enjoys her puzzles and her meals and her TV, and for the most part we are getting along.

Still, I regularly bitch to friends and family about how stubborn my mother is, how tropical she likes the heat, or how exhausted I am…but I’m also grateful. I’m grateful I’m not in my 20s, itching to play pool and drink margaritas with my friends at Café Hollywood on Lark Street. I’m grateful it’s not summertime and I’m not missing out on trips to music festivals or Hampton Beach. And I’m grateful I’ve got some stellar friends and family who have provided support, gifts, flowers, food, opportunities to get out, and company — all of which make a huge positive difference.

I marvel at how the experiences throughout my life have led me to this caregiver role. I had a child in diapers for 9 years, which better prepared me for this. The pandemic sent us home for work, which enabled me to move my office for both jobs here. Working as a caregiver some years ago taught me a trick or two in finding ways around difficult tasks, like changing sheets when someone’s lying in the bed. I reckon I was about as ready for this as I could be.

Luckily my mom loves cats, so it was a no-brainer to bring my two cats with me. And I’ve been able to get out for a few hours at a time here and there. When I visit Boo I’m gone for at least 5 or 6 hours, so on those days I serve my mom a hot meal for lunch and wrap up a peanut butter & jelly sandwich for her dinner while I’m away.

When I get frustrated, I try to put myself in her shoes. Her home has been invaded and she’s lost a lot of her independence. She doesn’t feel well, or strong, or in control of anything. She turned 80 in her bed. (I sang Happy Birthday and brought coffee, plus one blueberry muffin with a candle in it). We’re doing the best we can.

Speaking of birthdays, Boo is almost 21, and all our minds are blown. 21?! How did that happen?

I’ve had great visits where he devours his pizza & wings dinner, then we walk together around the campus, always with music on. His current favorite song is Attention by Charlie Puth, which is about as pop as pop gets, but he still requests Guster first and foremost, usually on a playlist I made that begins with Fa Fa. Last time I visited, it was a recording-breaking high temp of 64, so we ate at the picnic table!

I have a few new photos to share, too – Jonah likes his beard and always answers “no” when asked if he wants to shave it off.

I’d like to blog more often, because there are other things to say – but most days I’m too tired. There’s a meeting on Tuesday about Jonah’s “exit plan” from Anderson, which so far isn’t much of a plan. We shall see…

Be well, my peeps. Back soon, I hope!

the big year ahead

This year’s Christmas card came out a little dark, but I love the pictures anyway:

Last week when I drove down to see Jonah, there was a mix-up at the Visitor’s Center and both rooms were occupied, so we made do by having our dinner in the 2nd floor conference room. Briana was there to help, and the room had napkins, chairs, a table, and my phone to provide the tunes – so we had everything we needed. This time Boo wanted to dance, and he pulled me up to bop around as he grinned and giggled. It’s always so awesome to see him happy. He must have said thank you 3 or 4 times – for handing him my phone, for giving him a drink, for opening the blue cheese container…and each time it feels like a precious thing. Spontaneous language of any kind is special, and I know it took a lot of work to teach him. After dinner we took a walk in the dark and cold, and I couldn’t help but wonder how much longer he’ll be at Anderson. On March 7th he’ll be 21, and he’ll graduate in June.

I’m told he’s on a special list for kids aging out who are not currently being considered by any agency, and there’s a meeting soon about that. Jonah can stay at Anderson if he needs to, and it looks like he will need to, at least for a while. As Jonah and kids like him get older, there will be fewer and fewer spots for adult housing and day programs. Openings are few and far between. I used to think I’d do a lot of research and then Andy and I would choose the best possible placement for Jonah, but it doesn’t work that way.

There’s a portion of the disability community who vehemently insist that all people with disabilities can and should live independently, in their own residence, in the community. I’m not sure if they simply refuse to acknowledge people like Jonah or if they really believe all necessary supports will be provided to enable someone like him to live at home. After all, it’s just me here. I’d need 3-4 strong DSPs (direct support professionals) in my home pretty much 24/7, and that’s not on the menu, even if I had a big enough house to hold them all. If I did, and if I could, I’d love to have Jonah living with me again. I’m amazed at how much it hurts sometimes, even after 11 years, to live apart from him. Mainly I want him to live as happy and fulfilled a life as possible.

I’ve joined the National Council on Severe Autism‘s National Grassroots Network (NGN). To quote NGN, “We exist to help ensure that policymakers tackle autism as an urgent national priority — and are fully informed about the realities of autism and challenges faced by families across the country. We in the NGN will operate in all 50 states and across all congressional districts to emphasize the needs of the rapidly growing population of children and adults who need continuous support, and often, specialized services.”  I’m thrilled and grateful to be a part of an organization that finally addresses the needs of individuals like Jonah.

You can see NCSA’s official positions on a variety of issues in its position statements covering topics such as guardianship, housing, language and more. I stand in agreement with them all.

For now we’ll move one step at a time into the future, thankful for Briana and the other DSPs and teachers at Anderson, who care for and teach Jonah every day.

Happy Holidays, everyone! I wish you all a blessed 2023 full of love and laughter.

boo’s playlist

I’m so grateful when Jonah’s teachers and caregivers send me videos, and I have 2 to share…

In this first one, he’s learning how to play a game. (I love how he’s very conscious of being filmed – and how much he seems to love it):

Boo plays a game

In this one, he busts some moves while listening to “Attention” by Charlie Puth, which has been his favorite song for a while. (The song on the video was added by Siara, the awesome DSP who send me the clip):

I watch the videos over and over, and they always make me smile.

Boo had a (mostly) great summer, with rare aggressive behaviors and lots of fun. He got to swim and play, and he spent a lot of free time with headphones on, listening to his tunes. I made a playlist for him on my phone and put it on shuffle, for when we visit and walk around the campus. Recently, I’ve been sneaking some tunes by my old favorites into the mix, to test out his tolerance for them. “I’ll Tumble For Ya” by Culture Club was a big hit, and anything by Bob Marley always satisfies him. Other current favorites include “Cake by the Ocean” by DNCE and “Watermelon Sugar” by Harry Styles. I’m going to experiment with some Wham! and Duran Duran. I’ve tried some different classic rock songs, but he usually just hands the phone back to me and asks for Guster. Actually, every time he doesn’t like the song, he hands the phone back and asks for Guster — as if Guster is his default standard for acceptable music.

In that we are alike.

More updates to come….happy Autumn everyone!

One of my friends is really into the Netflix Show Love on the Spectrum and asked me if I’ve seen it. Well, actually, she kind of assumed I watched it. If I had a dime for every time someone told me about a book or movie or article or documentary about autism, I’d have enough to fill a wheelbarrow.

I’m usually just not interested. For 20 years now I’ve lived and breathed the reality of severe autism – and for a few of those years, I did it in crisis mode, documented here in the beginning of my blog. While there are exceptions (I recently read and loved The Maid by Nita Prose, for instance, whose main character is a woman who seems to be on the spectrum), I’ve kind of had my fill of autism and will often even avoid autism stories.

I’m particularly uninterested in “I cured my kid of autism” stories. If there were a “cure” for the severe kind of aggressions and/or self-injury seen in individuals like Jonah, we’d all be on board, believe me. Not to mention that for many people with autism, the notion of needing to be cured is insulting, and rightly so. What needs curing are those elements of autism causing distress, pain, and harm…the things that prevent the person and those around them from quality of life. That’s how I see it anyway.

At any rate I’m over here not watching Love on the Spectrum, though I know it’s supposed to be good. Maybe I’ll check it out sometime. I’d be lying if I told you the stories of higher-functioning people didn’t sometimes make me envious or sad. I’d love to have a conversation with Boo. I’d love to see him making friends, going places, achieving dreams, falling in love…participating in the world. And at the same time, I’m grateful he is innocent and unaffected by all the things that bring the rest of us down….fear of war, on high alert for school shootings, the divisive climate of our country, disastrous climate change, the recession, all of it.

As I get older, I feel gratitude more freely and frequently. Every meal, every friend, every heartbeat. I have enough and I know it. My son is happy with his music and his swimming pool and lives under the watchful eye and heart of Briana and others who love him. He has a mother and father who love him dearly.

I’ve been feeling better, embracing and strengthening my relationships with friends and family, going places and doing things. So far this season I’ve kayaked at a local lake, hiked in the woods, spent 3 days at the beach, shopped farmer’s markets, joined a dining-out group and met new neighbors, planted flowers, took a watercolor class, attended a wonderful weekend music festival (where Guster headlined one night), saw Janice Ian at Caffe Lena, and of course visited Boo a bunch of times.

I’ve settled into somewhat of a summer routine with Boo, whereby I stop at a local restaurant to pick up food for Jonah and his caregivers (usually Briana and Siara), and we all eat at the picnic table by his house, then take a campus walk. Always Jonah wants my phone to play music; at his request, the music he wants on our walk is Guster. Always the campus is beautiful. Almost always, he reaches for my hand and we sometimes dance or laugh.

Here’s the photo from the clever Mother’s Day card Boo/Briana mailed me. Gotta love that smile!

Although I don’t write here as much as I used to, I plan to keep posting updates and news of Boo. He’s still an interesting source of stories, and as we near his graduation and move into an adult program, there will be a lot to share.

I have faith it will be positive news.

Wishing you all a bright, beautiful summer full of love!

Can I believe my son is 20? Nope. I like him with the beard and ‘stache, though I reckon he’s just as handsome clean-shaven. Two pics are Jonah with his Easter Basket from Krause’s Handmade Candy, and a very focused Boo dyeing eggs. The 3rd photo is Boo on March 7th, his 20th birthday, about to blow out his (chocolate) cake (with chocolate frosting). HIs house threw him a big party, complete with pizza and wings – and all the blue cheese he wanted.

After another postponement, he finally had the operation to remove a cyst on the back of his neck. But he picked at the bandage and it came off, and the wound is not healing well. They tried to glue it together with skin-glue stuff, but every time he turns his head it stretches and finally breaks. I know they’re on top of it and he’s going back to the doctor soon, though I can’t help worry. I hate when he has health problems of any kind. I always think, “isn’t it enough that he has severe autism and is blind in one eye?” As if there could be a limit to what one must endure in this life.

I’ve been better and then not better, struggling and trying new medication, meditating and listening to a lot of Pema Chödrön, forcing myself on the treadmill every day to walk at least a mile uphill, forcing myself out when it is sunny, like now. I am not out now, but I was earlier. I swept and raked and cleaned a little. Some days doing just a little is a lot.

I shop for my mom once a week but I do it at 8am on Saturday or Sunday, so as to be there with but a handful of other early birds. If I try to go at noon with all those crowds of people I swear I’d have to abandon the cart. When it gets bad inside my brain, I remember the song “A Private Future” by the Stone Roses, and how they sang, “Live a life you love, choose a God you trust, and don’t take it all too seriously.”

It sounded like good advice then and it sounds like good advice now.

More to come in May. And randomly sharing a photo I took at the Denver Aquarium. Never underestimate good timing!


So many people I know are hurting — facing anger and trauma, fear and sickness and pain. In so many ways it feels like we’re all in freefall. I tell myself to face forward…move slow…forge ahead (actually, Guster tells me that – but I am listening). The springtime is coming. The sunshine and warmth. It’s got to help some. I’d like to build a foundation of peace, honesty, and self-love from which to face suffering and elevate my life — and to influence all the people around me positively. I know it takes real work to feel peace, and lately I haven’t been holding up my end of the bargain. I’ve just been feeling crushed beneath the wheel.

Yet here is Boo, having fun, listening to his tunes and laughing and doing his belly-slaps. It makes me happy to watch him happy.

He will be 20 on March 7th, somehow. Somehow two decades went by.

I’m going to make this next part short, because it’s hard to talk about. The day after Christmas, when Briana was on vacation, a staff person allegedly abused Jonah. I say allegedly because there evidently was no witness, and yet Boo was found with a black eye, marks on his face, and bruising on his sternum. Another staff person noticed this and brought it to the attention of supervisors. The Justice Center for the Protection of People with Special Needs, the state police, and the school launched an investigation. Police officers came to Jonah’s house and interviewed staff, and then they interviewed Jonah (though Jonah could not really help – he is not verbal enough, nor does he have the ability to understand the questions or identify his attacker). Jonah does not self-harm. Someone was identified as a suspect. This person was placed on off-site probation pending results of the investigation, and the investigation recently came back unsubstantiated. When I inquired about the status of the suspect, I was told they are no longer employed by Anderson. That’s all I want to say about it, and all I know.

We are moving forward.

Jonah needs an operation to remove some growths on his face and neck, and it’s been postponed twice, both times because of weather. Now it’s rescheduled for April 1st — not a joke. He’ll have to have general anesthesia. Andy is going to be with him. We’ve both been visiting him, though separately. I’d like to visit together but Andy doesn’t really want that. I wish we could be friends again. I miss him.

All I can do is try to be the best friend and relative to the people I do have in my life. And I have so many. I’m so blessed with people who truly care about me. It’s a wonderful thing to know, and to remember.

I weave pot holders on kiddie looms. I practice my guitar. I do paint-by-numbers and make collages and write poems. It’s all creation, and it saves me.

I’m grateful it saves me.


Things are messy. There is a lot I can’t say until it’s all over. I know that might not even make sense, but it’s been so long since I’ve written that I feel the need to give an update, if only to say happy new year…and to tell you my last visit with Boo was a wonderful one. I made food this time – cooked taco meat and brought down all the fixings, and watched my son devour 3 tacos consisting mostly of sour cream. The 2 staff members who were with us ate too, and afterward we took a campus walk (gratefully it was the warmest night of that week, which was otherwise frigid).

As usual, the 2 staff members walked a bit behind Jonah and me. Jonah almost always wants my phone to play music, but this day we held hands and sang 3 Guster songs together instead. In the middle of the 3rd song, he suddenly shrieked with laughter and yanked his coat & shirt up to do his “happy belly slap.” I was thrilled, and comforted, and drove home smiling.

Still I wake every day scared, anxious, and unsettled, as though I’d done wrong or was facing something dark and foreboding. A good friend hurt me terribly and now I feel sick inside, afraid to make myself vulnerable again. I joined bumble and am dating a good guy who plays the guitar and loves music. I own a guitar I’ve never learned to play, so now I’m doing that too. We’ve been hanging out a lot, and we have fun, but I can’t shake feeling uncertain, so I just allow myself to feel that way until I don’t feel that way anymore. I meditate semi-regularly, I walk the treadmill, I do intermittent fasting, I practice the guitar, I try to stay forward-facing. I willfully compartmentalize & ignore the thing I can’t talk about yet.

My parents are getting weaker, older, and more vulnerable, each currently living on their own, and an uncertain future of caring for them as their only child stretches out before me like a looming threat. I don’t know if I have it in me but I’ve got to have it in me, like it or not, for as long as it takes, despite my own shaky mental and physical health.

My heart skips and jumps and races and stops, so I went to the cardiologist and wore a heart monitor for the week after Christmas. My resting heartbeat is more than 100 BPM – and the highest heartrate of that week was 155, just after midnight on January 1st, when I am pretty sure I was asleep, which makes no sense at all. At any rate, now I’m on heart meds too.

Add to all of this a frigid winter and 2 jobs full of work, and it’s enough to send me to bed most days by 8pm, escaping into blissful sleep until the early morning brings its anxiety to drown me anew.

I’m hoping springtime and sunshine will help. It sure can’t hurt.

I’m exhausted.

So I recently posted that Briana, Jonah’s wonderful house manager, won the Anderson Center for Autism’s Above and Beyond award this year, after being nominated by yours truly and two other parents as well. They cancelled the live event because of Covid concerns, but yesterday Briana texted me to say they finally sent her my speech, which I had recorded via Zoom. I’m happy to share it with you all:

I had to sit and rehearse the speech over and over until I could get through it without “ugly crying.” I could have gone on and on about Briana – but am so grateful to her for everything she’s done and everything she is. Jonah is so blessed and lucky to have her!

one wednesday

The past two times I’ve visited Boo have been on a Wednesday, around dinnertime, when his house has the staff available to help keep everyone safe. It felt strange, like Jonah and I were famous and required bodyguards to watch over us. I am grateful, though, for otherwise I’d be hard-pressed to visit him at all. I don’t have a whole lot of people willing to travel down with me and risk being attacked by my son. And as of fairly recently I am single again, so the pool of helpers is now even smaller.

On the first Wednesday, there was a bit of a miracle. After chowing down some Micky D’s, Jonah sprang from the picnic table and declared “walk” – so I jumped up to join him, and 3 staff members followed us at a slight distance. The campus walk we take is a little more than a mile…a beautiful mile, really, past a pond with a fountain spray and lots of wooded areas. As we walked along, I gave Jonah lots of space, keeping pace with him but from about 8 feet to the side. At one point about a third of the way in, Boo started to move toward me. I kept cool and waited. With his right hand holding my cell phone playing music, he threaded the other hand into mine and held it firmly as we walked along. Like magic. He hasn’t held my hand for any length of time in years. He simply doesn’t do this. And yet there we were, hand in hand as if we always walked this way together.

Briana, walking behind us, took this photo. She told me later she was holding her breath, almost in tears. I was too. I was a little in shock and grinning wide.

He held my hand for the whole rest of the walk, and when we said goodbye he offered me his cheek to kiss before he went inside the house.

Driving home, I thought about the strangeness of our relationship, how little we can communicate verbally and how amazing the simple act of holding hands. I thought about happiness – how it comes to us in moments…a fresh-baked cookie, a tiny baby’s smile, a winning poker hand, the full moon on a cool October night.

I thought about how happiness can be just as much the absence of something as the presence. How when you’ve got a headache, happiness looks a lot like not having a headache. How when your child lives away from you largely because of his violence, the absence of aggression becomes a state of joy. In this light and from this frame of mind, anything beyond calm is a bonus – and this day, a jackpot.

I am filled with gratitude for Briana and her staff, and Anderson, and every tiny decision that led us to its doors. Don’t get me wrong; Jonah isn’t a made-for-TV movie success story, and his life is not ideal. When they take the other kids in the house for apple and pumpkin picking, Jonah stays behind. It simply isn’t safe to take him. And though my first reaction to this may be sadness, I have to remember he really doesn’t seem to care. Sometimes I struggle not to impose my own ideas and ideals on his life. I have to pause and understand what happiness looks like for Boo might be very different. What success looks like for him might be to manage his emotions in such a way that nobody gets hurt. And maybe what love looks like to him is taking his mother’s hand on a walk around the Anderson campus.

I still awaken afraid, and the new path I’m forging is frightening too. But I’m trying to approach it like the Buddhists do. I sit in the quiet and allow myself to feel the emotion, however scary or strong. I notice where it arises in my body, the fear or the anger. I can feel it in the set of my jaw and the tightness of my shoulders. I find that when I do this, neither fighting nor ignoring the emotion, it passes. Like a craving for a cigarette or a sweet. It passes, if you let it pass. Everything changes.

I pause and try to examine my feelings with curiosity and compassion. When I get caught in a negative self-narrative, when the panic arises, when regret twists my insides into painful shame, I say to myself “thinking” and come back to the breath. Come back to the now. What we think is what we tell ourselves, and often what we tell ourselves is false. We buy so easily into everything we think, believing it all without question. It’s all just thinking, really.

Those are some of the ideas I’m putting into practice, anyway. I fail about as much as I succeed, but the wisdom I find in Buddhism feels more like truth than anything I’ve encountered yet.

Do I sound like I’m flaking out? So be it. I am a deck of cards old now, past caring if I sound flaky.

Onward ho.

Small wheel turn by the fire and rod, Big wheel turn by the grace of God.
Every time that wheel turn ’round, bound to cover just a little more ground.”

~ The Grateful Dead

above and beyond

I’m thrilled to tell you all that Briana, Jonah’s wonderful house manager, has won the Anderson Center for Autism’s Above and Beyond award this year, after being nominated by yours truly and two other parents as well!

From Anderson:

Briana Booker has been with Anderson Center for Autism since October 2019. She began her career at ACA as a shift supervisor in the children’s residential program, and was shortly thereafter promoted to the residence manager position. Briana has a long history of working with children and prior to ACA worked in a school setting. She also pursued higher education and received her Master’s in Sports Management with the focus of special education and inclusion in sports. Since joining ACA, Briana has made a tremendous impact in the children’s residential program. She oversees a residence of nine teenaged boys and has truly impacted their quality of life. Her genuine care for the students is recognized by ACA team and family members.  

The Above & Beyond Award is an award given to a deserving ACA team Member, at the annual benefit. Candidates were nominated by ACA parents, who were asked to provide a short narrative describing how the Team Member they are nominating has gone “above & beyond” in the care of their child. This is meant to honor an individual who goes beyond the expectation of optimizing the quality of life for the people we serve, thus making the nomination reviews very important. The winner is a person who, either in a specific situation or on an on-going basis, takes actions that give you that emotional impact-the “they didn’t have to do that, but they did” feeling.

This award has been made possible by a generous donor who seeks ways to highlight the incredible work of all ACA Team members, especially those who go “above & beyond.”

I can’t think of anyone more deserving of this award and $1,000 prize!

Originally Briana was going to be celebrated at a fancy gala in Poughkeepsie later this month, but because of Covid concerns, they’re “re-imagining” the event.

Anderson did, however, contact the people who nominated Briana to record a speech about her. I did my speech via Zoom on Monday, and no matter how many times I practiced it, I wasn’t able to get all the way through it without my voice breaking – and I reckon that’s okay.

I’ll put the text of the speech here after the event is over and I know Briana has had a chance to hear it. For now I’ll just say it feels incredible to know she is in charge of the house where Jonah lives.

Congratulations, Briana!

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