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let’s make a deal

July 7, 2025 by The Never Normal

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.

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father david e noone

June 22, 2025 by The Never Normal

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.

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fortunate son

April 30, 2025 by The Never Normal

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.

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trendsetter

January 11, 2025 by The Never Normal

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.

Posted in Uncategorized | 2 Comments »

closed

November 1, 2024 by The Never Normal

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.

Posted in Anderson School, behavior, The Anderson School for Autism, Uncategorized | 5 Comments »

the blessing of the cows

September 23, 2024 by The Never Normal

On August 22nd, I met Jonah and the van of other students and staff from Anderson at the Duchess County Fair for Sensory Awareness Day – and, just like last year, Jonah and I walked around by ourselves for the first couple hours.

He didn’t want to go many of the rides, though he expressed interest in the merry-go-round. We were the only two people on the thing, so I easily found horses next to one another and showed him how to climb up. As soon as the ride started and the horses moved up and down, however, he tried to get off, one leg hooked over his horse and the other trying to find footing. I slid off my own horse and helped him down, the two of us just standing there between our horses for the rest of the ride. Needless to say, I did not encourage him to get on anything else.

Last year he did well on the bumper cars, mostly because I put him in a car beside me and drove us both around, but this year I didn’t see that ride. So we walked. We walked and we walked and we walked. I let Boo decide where to go, and where he wanted to go was everywhere, my phone in his hand with music playing. When I saw 2 golden retrievers with service vests on, I asked the handler if Jonah could meet the dogs. “Of course,” she answered, and led the dogs closer, but Boo put his hands up in a “nope” gesture and backed away. He’s never been comfortable around dogs, though to the best of my knowledge there’s no logical reason for this. Maybe their movements are too unpredictable.

You know whose movements aren’t too predictable? That’s right…cows.

And even after the great cow incident of 2023 when Jonah lay down on a resting cow and we were very sternly admonished, I led him over to the livestock area. I was a strange mixture of curious and afraid, but this year I at least asked the staff if he could touch a cow.

They said yes, briefly conferred amongst themselves, and led us over to a giant cow named Adeline. Unsurprisingly, Boo knelt down, reached out to pet the cow, and then started climbing on top of her. I was ready this year, though, so quickly guided him back and off poor Adeline.

After we walked around the fair some more, I decided we best meet up (and stay) with the Anderson group. It was nearing lunchtime anyway, and my middle-aged legs were getting tired from the 10,000+ steps they’d already taken. When I texted the group, they were headed to the stables to see the animals – so Jonah got another look at the cows after all.

By now there were other kids hanging out with the cattle. One kid was actually sitting right in the pen with a cow, leaning against her as he played on his cell phone. Seeing this made me feel a little better about letting Jonah approach the cows again. This time, he knelt between two cows and placed a palm on each one as if participating in some bovine benediction. I’m pretty sure he’d have stayed with those cows all afternoon if I let him.

Instead we mooooved on, got some lunch (Boo wanted hot dogs and vanilla ice cream) and I walked with them all back to the Anderson van, where the kids piled in for the ride back to campus. God bless the direct support professionals who managed it all, for I was as tired as I’ve ever been and I barely lifted a finger.

I’m looking forward to visiting Boo this Sunday, where a friend may join me. Lately I’ve invited people to come along and walk the campus with us; Jonah seems to enjoy the bonus visitors. Plus it’s fun to drive to Woodstock after seeing Boo – to get a bite to eat, go in the shops, & check out the hippie scene. I always feel I belong there; they are my peeps and it’s a fun place to be, especially after all the summer tourists depart.

Happy Autumn to you all – may the season bring sunny days, festive fun, and happy cows!

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lightning rod

August 20, 2024 by The Never Normal

Until very recently, my visits with Boo included a playlist of music with about two hours’ worth of songs on it, and we listened to it every time while walking around the campus. Then, somehow, I deleted it by accident. I suppose I could search the history in YouTube and reconstruct it – and I may yet do that – but for now I created a slightly different playlist and added some new songs I thought he’d enjoy.

I hoped the change wouldn’t upset him or “jam him up,” as my cousin Brian would say. It didn’t seem to, so for the past few weeks we’ve gone with the new playlist.

But one thing about Boo is you never know what he’ll enjoy. His music preferences are capriciously varied and difficult to pinpoint or generalize. Usually he prefers a pop or reggae song, something with a good beat and solid rhythm.

For our most recent 2 visits, however, he has chosen a slow, ethereal song called Lightning Rod by Guster that’s the intro to their album Ganging Up on the Sun. Jonah has some skills navigating YouTube, and he veered off the course of the playlist I’d made, and up came Lightning Rod. It’s the kind of song a lot of people would skip to get to the next song, Satellite. But Jonah hit repeat and played it again. And again. And again, and again – using it as the single song soundtrack of our entire walk.

Here are the words:

“Standing on a building
I am a lightning rod
And all these clouds are so familiar
Descending from the mountain tops
The gods are threatening
But I will return an honest soldier

Home

Steady on this high-rise
Like every lightning rod
And all these clouds are boiling over
Swimming in adrenaline
The sky is caving in
But I will remain the honest soldier

Home”

And all I could think of was that terrible day, August 16, 2011, when Andy and I put him in the car and drove him to Anderson to live somehow away from us, Jonah crying “home? home?” repeatedly in a scared little voice, our hearts ripping open all over the car. The sky caving in.

Home.

Melancholy thoughts as August approaches its end.

On Thursday I will drive down to meet Jonah at the Duchess County Fair again, where staff from Anderson will be bringing several kids. Last year he and I walked around the fair together, just the two of us, before meeting back up with the others for lunch. Boo and I went on a few rides and then for some reason he wanted to see the cows, who were all lying down in their stalls.

I snapped his photo standing next to one, and as I was messing with my phone to see how the picture came out, he lay right down on a huge cow, who luckily did not seem to mind in the least. He straddled her gently as if she were going to rise up and give him a ride around the barn. I quickly shooed him off, all the while trying not to laugh as the bovine police approached to yell at us.

Time for horseback riding lessons?

I’ll be back with news of the fair and any cow antics. Be well, my peeps.

Posted in Uncategorized | 6 Comments »

fish

June 7, 2024 by The Never Normal

Once again the pool at Anderson is open and Jonah is there for the fun. It’s always a treat to hear from new staff who, until now, have only heard the legendary stories of the fish that is my son. They’re always amazed at how he takes to water so easily and naturally, as if born and raised in it. I swear if he was a “normal” 22-year-old he might actually have a shot at the Olympics – or at least a summer job lifeguarding somewhere!

I don’t know where he got it from. Certainly not me; I have to plug my nose just to go underwater and am barely a passable swimmer. His dad can swim, but not like Boo can. I love that he has the opportunity to indulge in one of his favorite things every summer. It’s definitely a gift and I don’t take it for granted.

I am a little worried about what will happen when an adult placement comes up. Well, to be honest, more than a little worried. He’s doing so well where he is. In fact, his behavioral specialist called me yesterday and said they were removing the body block (one of those big foam-filled bags they use for karate and football in practice) from his behavioral plan because staff has not needed to use it at all. Staff is good at determining Boo’s early warning signs and acting accordingly to get the situation under control and avoid aggressive behaviors. They are, as my cousin Brian told them recently, doing God’s work.

Brian came with me on my visit last Sunday. Boo calls him “Uncle Brian” and remembered him right away, even though he hadn’t seen him in 3 or 4 years. Brian loves Boo and openly admires his directness more than anyone I know. It was a great visit, during which Brian snapped a few photos along the way with his digital camera. He has no computer and no cell phone, preferring to live firmly in the 20th century. I say more power to him! Our fathers are brothers and we have always been close.

Since I last wrote, Jonah also enjoyed a campus Cinco de Mayo parade…

…and participated in a Special Olympics event at the rec center, where I am told he made several baskets, despite a lackadaisical interest in the sport.

It’s been a whirlwind couple of months for me, too. I’m hoping to sell my other house now that I’m living at my mom’s house, and there’s a lot to clean out and fix up before I can make that happen.

I am, however, doing better mentally – partly because of the sunshine and warmth of spring, and partly because I’m actively creating a life filled with friends, family, activities, and gratitude for everything I’ve got. I’m meditating again regularly, exercising and eating better and, best of all, have joined a community chorus called Rock Voices with my friend Laurie. I’m singing alto and I absolutely love it. There are 3 “seasons” a year and the current one consists entirely of Queen songs, culminating in an August concert – 140 singers strong – at a local high school. We will rock you!

Until next time, my peeps…stay cool, relax, get hip! And be well.

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swings

April 17, 2024 by The Never Normal

Lately I have been going down to visit Boo every other Sunday, watching the weather with trepidation every time, for if it’s raining, it’s ruined. So far, so good. We’ve been able to enjoy sunshine and mild temperatures. We love our time walking together, almost always holding hands – and lately, toward the end of our walk, I’ve been asking Jonah if he wants to go on the swings. Yes, he does, every time I ask. He always wants me to hold my phone up so he can hear the songs on the playlist we always listen to; I get him started by pushing, then he takes over, swinging higher and higher. I have a little compilation of photos, gathered by taking so many pictures with my phone that one or two is bound to come out well:

My time with him is so precious to me. It is when I am happiest.

I’ve been avoiding the blogging because I have been low, the scared feelings occupying more and more of each day. Where it used to be I’d wake with fear at 4 or 5 am, it now bleeds into morning, afternoon, and evening, staining days with anxious desperate panic episodes that don’t subside.

It is exhausting and I don’t know what’s happening but I took on a lot in April-into-May, a not-so-great work trip to Little Rock where I spoke up about needing to consider those with severe intellectual and developmental disabilities, this at an independent living conference, which as you can imagine made it awkward and I the enemy — and then right after it I went on what was supposed to be a vacation in California, but my dear cousin Donny died the morning of the first day, which cast a sadness over the week; I missed the wake and funeral services — then just after that I went to a cabin-in-the-woods weekend with 5 friends during which I worried, perseverated, couldn’t be alone. I’m not 25 anymore and shouldn’t have crammed so much in so little time.

There is a lot going on in my brain and I’m having difficulty finding the mental health care I need. The first 3 psychotherapists I called from my insurance company website told me they were not accepting new patients. The 4th told me to just find a psychiatrist – but I know from experience that most of them just do med management, and that’s not what I need. It’s frustrating to seek care and it’s just not available – and when you are feeling mentally ill, it’s so difficult to be tenacious.

I need rest and I revel in the simple times with my son.

I’ll come back when I’m in a better frame of mind. If I keep typing today I will ramble and bitch and I don’t really want to share my jumbled panicked thoughts.

At least the spring is springing, and my boo is swinging. I’ll take it, for now.

Posted in Uncategorized | 8 Comments »

a buck fifty

February 6, 2024 by The Never Normal

For weeks I’ve been going through my mother’s drawers and closets and cabinets, sorting items out to donate and piling it in her living room. Eventually there was so much stuff that it looked like a small thrift store. I dealt with it in stages. As much as I didn’t want to keep the things, I couldn’t bring myself to get rid of them either, for a while. It stayed like a small thrift store for a two months or so until I boxed and bagged everything up – and it stayed like that for a week until I finally carted most of it, one car load at a time, down to Grassroots Givers in Albany. The rest I gave to someone who came to the house with a trailer. The last of it is gone now, and there is a big empty place in the room. I don’t know what to do with that space but I’ll figure something out.

Where two identical display cases stood for more than 40 years, there are flattened imprints in the green carpet. Sometimes I stand there, one foot on each, just to occupy space where no human has stood in decades. The house feels lonesome and strange. I don’t really miss my mother – our relationship was too acrimonious for that – but I do miss having a mother. I want my mommy…but I want some version of her I never had in the first place. I don’t know if that makes any sense. This isn’t at all what I expected, but then again I can say that about so much of my life.

Jonah still has no adult program plan, and I don’t want to talk about that. The early morning fear is still there, but I don’t want to talk about that either. I distract myself doing things with friends, with crafts, with cleaning, with word games and puzzles, with tv shows and movies and books I’ve already watched and read many, many times until they are comfortable, familiar things.

There are always the people who recommend books, tv shows, and movies about autism. If I had a nickel for every time someone did this, I’d have about a buck fifty. I almost never want to read, watch, listen to, or encounter anything out in the world about autism, as I’ve had more than enough of it for 3 lifetimes. The latest book recommendation came via email from a well-meaning new-ish friend who doesn’t know a whole lot about Jonah. The recommendation was for a book about a non-verbal kid with severe autism. I glanced at the synopsis and as per usual, it’s an inspirational tale of an underestimated child whose intelligence was unlocked once they found an appropriate means for him to communicate. 

While I do understand that the person who sent this to me probably did not intend to be instructive or insulting, I can’t help but take it as a “maybe you too can unleash the overlooked intellectual potential in your child” message. 

I hate these kinds of books, honestly. To me, they imply that educators and parents of kids like Jonah might have teased a kind of brilliance out of these children if only we had provided the correct tools. The message, also, seems to be that there are no significantly developmentally/intellectually disabled individuals – only those waiting for someone to come along who cares enough to help them communicate effectively.

The other takeaway seems to be that the value of a human is in one’s intellect. After all, the triumph of these stories is always the discovery of greater intelligence than previously perceived. 

Whatever the case, I say Boo is worth just as much as me or you, just as he is.

This past Sunday I drove down to visit him. The sun was shining for the first time in a few weeks, and it was a mild day. So warm, in fact, that after our lunch and our walk, Jonah wanted to swing. I held my phone up, playing the familiar mix of music he always likes, and he smiled and swung for quite some time before asking “more walk?” And so we walked some more, holding hands as usual. He even smiled for a selfie. 

I miss him almost as soon as I drive away. 

I have locked away so much of my emotion where Jonah is concerned. It is a defense mechanism. I do not often allow myself to wonder what he would be doing if he were any other almost-22-year-old young man…but sometimes I do. 

Of course I like to believe he would be a happy youngster, maybe in a romantic relationship with someone special. I like to think we would be close, he and I. I don’t imagine specifics; they are too difficult to conjure. 

Mostly I just enjoy him for who he is and try not to despair when he has aggressive behaviors or medical problems. For now, this is enough. 

The groundhog did not see his shadow, so they say, which somehow means we’ll have an early spring. This I can get behind. 

May it be warm soon, with sun shining on us all!

 

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