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.

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!

 

Sing like no one’s listening, love like you’ve never been hurt, dance like nobody’s watching, and live like it’s heaven on earth. – Mark Twain

I feel like I’m always here to complain about or bemoan something. Maybe that’s because I most need to write when I am sad, or angry, or stressed. But today I’m here to share a little bit of good.

I think this link will allow you to view the 8-second video of a very joyful Jonah (though I can’t get the sound to work. He’s tapping his tummy rhythmically and happily). Thank you so much, Briana, for sending it to me.

Jonah’s happiness is unencumbered and pure – the kind the comes with zero self-consciousness and complete abandon. He’s the poster child for the expression “dance like no one is watching.” I watch these 8 seconds of joy over and over, as if to embed it in my brain. Mold it to my memory.

I miss him so much. I didn’t visit on Sunday, even though that’s the day I normally would, because the weather was so crappy. We couldn’t walk in the cold downpour, and without his walk, the visit would be kind of a bust. So I’m taking today off and picking him up at school for lunch and a walk. I’ll bring him his favorite McDonald’s food – he’s been asking for it lately – and we will walk together first one way, then the other, around the campus.

Jonah has always known joy. As a small child, playing with discarded confetti from SUNY Albany’s graduation ceremony…

….and as an adult, triumphantly raising his handmade ornaments to the sky at the Anderson Center’s Christmas tree lighting.

I need to have faith in the joy.

I’m grateful I need not tell him grandma is gone. He will remember her always – of that I am certain. His memory of people is a pristine portion of his brain that operates seemingly perfectly. And it’s untarnished by grief, by the knowledge he’ll never see her, or anyone else he has lost, ever again. So many people have moved through his river of a life. Teachers, grandparents, direct service providers, friends, babysitters. I don’t know how he feels when a particular person is no longer there. I don’t know how he feels a lot of the time. But I know when he feels joy.

Maybe that’s enough.

Joy to the boo…and to all of you.

My mother & Boo’s grandma, who adored him above all else in this world, passed away on Sunday, October 1, 2023, after suffering a massive brain bleed on Tuesday, September 26. There is not much to tell – Tuesday at dinnertime she complained of pain in her right eye, then she quickly deteriorated (suddenly not knowing where I was in the room, ignoring everything on her left side) so I called 911 and rode with her in the ambulance to Memorial hospital, where a CAT scan proved the problem and a kind doctor explained she would not survive the only operation that would give her a chance.

Soon she could only look at me and squeeze my hand. By 3am, when they took us by ambulance to Samaritan Hospital in Troy, she had lost the ability to communicate. I thought she would pass away that night, but her strong heart beat for 5 more days in hospice care with no fluids or monitors, nothing but morphine and the swab sticks I used to moisten her mouth. Her whole family – my cousins and aunts and uncles – came to support her – and me.

The hospice workers and nurses at Samaritan were wonderful, cleaning my mother so gently, talking to her and making sure she was comfortable. I never felt like she was suffering, thank God.

At night I pulled a lounge chair next to her that thankfully folded out flat, and there I lay in the dark and the quiet and I loved my mother. I felt more love and compassion for her during that time than in maybe the whole of my life.

They told me she could hear me, so I made her a playlist of songs with her name in them (Daydream Believer and Little Jeannie) and artists she loved (Englebert Humperdink, Anne Murray, Barbra Streisand, Frank Sinatra), and we listened to music together. I played her favorite movies (Gone with the Wind, My Fair Lady, The Sound of Music).

I held her hand and watched her breathing. When sometimes she would pause for long seconds between breaths, I resisted the urge to shake her. Not yet! I’m not ready. It wasn’t supposed to happen like this.

It’s hard to explain. All I did was complain about her, I know, so I never imagined it would be this hard when she died. I thought I would feel relief, and a little unsettled. Instead I am pulled and pushed through a threshold of raw emotions. I turn in circles and get angry, then depressed, then confused, then resentful. I do feel relief, some, and an overwhelming sense of the unraveling of everything I grew accustomed to since I came here to live just over 9 months ago. All the daily preparations, cooking, cleaning, laundering, toileting, brushing her teeth and filing her nails and everything she needed, 7 days a week. The absence of it all is a strange vacuum.

I walk around this house and look at things and don’t know what to do with myself. I go through one drawer or closet at a time to keep myself busy, sifting through pieces of her life, then putting them back. It’s hard to decide to do anything at all with them. It feels like I’m erasing her to move her things.

For 9 months I was itching to be free, to get out of this house and join my friends on beach trips and getaway weekends, to go camping or travel somewhere or just have a break – any break. Now she is gone, and I don’t want to go anywhere and I don’t want to do anything. I don’t feel like getting up or making food or talking to anyone.

I don’t know how to not have a mother.

I don’t want to do whatever this is I am doing, but there is only this and there is only the doing of it. On Thursday I will drive down to visit Boo; I will hug him extra tight and tell him grandma loves you so much.

Rest now, momma. I love you more than I knew, and all the bad stuff is forgotten. Farewell.

Mr. Braddock: Don’t you think that idea is a little half-baked?

Benjamin: Oh no, Dad, it’s completely baked.

The Graduate

Jonah graduated from the Anderson Center for Autism on June 23. It was a beautiful ceremony with 19 graduates, I think, and the school was very smart to keep things short and simple. The ceremony was held under a large tarp, and each graduate was provided with their own table for family and friends. As each name was announced, the graduates came up one by one in cap and gown to receive a certificate and have their picture taken. There were a few minor behaviors from a few of the graduates, but we all expect and accept it – after all, those graduates are at Anderson for a reason. It’s not like out in the world, where you might be shushed, judged, or barely tolerated.

After that, there was a yummy buffet spread. A lot of the graduates had a whole group of people to celebrate them, and I was afraid Jonah’s table would look empty with just me, but several people from his residence and school came over to sit with us.

Jonah made his usual request – go walk? – so we had a short stroll and Briana took that picture (above) of me and Boo holding hands, all smiles. She also created a celebration board complete with photos of Boo throughout his life, got him that amazing cake you see above, and decked him out in those awesome duds. Have I mentioned she goes above and beyond?

It was an excellent day of celebration, and I’m grateful for everyone who worked hard to make it so special. Now that Jonah has graduated, he’s staying at Anderson, of course, as there are still no adult placement options available. There is a graduate track for Jonah and others who have no placement yet, so he won’t be left without a day program.

In fact, August 16th was the 12th anniversary of Jonah’s first day at Anderson – the day he cried “home?” on the terrible car ride there in his plaintive little voice. The day of disbelief in this surreal thing we were doing. The day when Andy and I dropped off our only child and left our hearts behind with him.

We all survived it, though not unscathed. Actually I would say we were very scathed. Completely baked, just like in The Graduate. I wouldn’t go through those years again for all the money in the world. But I’ve said all this before.

Later this month I’ll get to see Jonah at the Dutchess County Fair – they’re bringing some of the kids on a special day for people with sensory issues, and I’m taking the day off to meet them there. I wonder what he’ll want to do. Surely the food and the animals will both be attractive to him, but I’m not sure about the rides. When he was little he’d go on the merry-go-round, but even then he eschewed the horses in favor of sitting on the boring bench that does nothing. I’ll keep you posted…you never know what Boo will choose. I’m sure a lot of walking will be in order, at any rate.

There’s more going on, as usual, and I’ll talk about that in my new blog – whose link is over to the right under My Favorites – The Other One.

Until next time, my peeps, be well and enjoy the end of summertime!

I had the pleasure of attending Boo’s senior trip with him a few weeks ago at Camp Pontiac, this amazing summer camp that donated the space & resources (including lunch and staff) to Anderson for the day.

Here we are in the gym, which was full of trampolines, mats, and other fun equipment aplenty. We had just jumped around a little together and were taking a break in this photo.

It was the most time I’d spent with my son in a very long time, and he did so well! He was happy and interested. I took the day off from work and met him there – for safety’s sake, Briana drove him separately in the Anderson van, instead of on the chartered bus the other kids took. Each senior had a special tye-dye t-shirt with their name on the back, and there were scheduled activities (cookie decorating/ painting) as well as the ability to ditch those and walk around the huge campus. Jonah did a little bit of everything.

Here we are in the painting cabin. They had flower pots or canvases, and Boo chose a canvas – then proceeded to mostly watch me do the painting.

After that we walked up one path and down another, past cabin after cabin, by two lovely pools, and a little stream that ran through the whole place. At 12:30 they served delicious lunch – there were burgers and chicken and salads and dessert. We ate together at a picnic table and then my time was up and I drove back to my mom’s, where it has been 5 months and counting since she fell and I moved in. I immediately sent a thank you card to Camp Pontiac and am so grateful for this special day with my son.

I am moving everything non-boo related into a blog called The Other One that I’m going to keep in my portfolio at writing.com. I’ll only say here that my mother and I are (mostly) getting along better than we were, and that last week I left an olive-branch phone message for my father, but he never called me back. I’m kind of a wreck, to be honest, and have resorted to taking klonopin a few times in the past week, lest I harden up into a steel frame of a middle aged woman who can no longer move at all. My shoulders, neck, head, stomach, muscles….all are tightened and taut and hurting. I’m upset that I’m this upset, which is, well, upsetting. I’m reading The Body Keeps the Score and am beginning to understand how different kinds of trauma manifests in our physical bodies. It’s a very interesting read, though I can only listen in small doses, switching over to lighter fare to keep my focus balanced.

I have Friday off for Jonah’s prom and will be back with more photos and hopefully an awesome anecdote or two. The week after that is his graduation, and my bio relatives from Arizona are visiting too.

As Guster says, let’s face forward, move slow, forge ahead. Speaking of Guster, they are coming to Tanglewood on my birthday! Plus they came to Tulipfest here in Albany for free, so you bet I was there. A Guster show is always full of joy – the whole crowd singing along during Terrified: Open up your heart! Everybody’s got it hard; we’re built, then fall apart. We’re all terrified. Indeed we are. Indeed I am.

Onword ho…

“One more itch,
you son of a bitch
been a waste of my time
always
Now you’re half awake
you bend till you break
you make the same mistakes
always…”

– Happier, by Guster

One day, I will live in a little log house on 30 acres of woods in Chatham, NY. There will be a stream, and a hill, and trees everywhere you look. I will befriend birds, squirrels, rabbits…all manner of wildlife. I’ll spend my days making trails, stacking rocks, and creating tiny homes for elves and faeries. I’ll have a big pool or pond just for Boo; we’ll dance to Guster and play in the leaves. Hell, I’ll grow gardens of veggies just to feed the deer; they’ll be the happiest critters in Columbia County.

Y’all can keep this damned divided country full of hate. Demonize the Other all you like. I’ll be on my own little parcel of peace, all done trying to be good enough, all done trying to make a difference. All done. Quiet. Calm. Still.

One can fantasize.

The good news is Jonah has been doing well. He’s got 3 upcoming events and I’m looking forward to attending them – a senior class trip, prom, and graduation. Briana is going to be at all 3, and she’s helping me coordinate some cool clothes Jonah will wear for the occasions. I’ll be sure to take lots of pics to share! I just saw Boo this past Sunday…it was a rainy day and I was worried I’d only get to be with him for a short while, so I brought some DVDs to coax him into hanging out a while after we ate lunch at the Visitor’s Center. As if through divine intervention, though, the rain stopped long enough for us to take our campus walk, hand in hand as usual, playlist on full volume. We adore our walks. Jonah truly loves his mama unconditionally, and I love him unconditionally as well. We don’t have to say anything to one another to know it. It’s a singular bond.

I interrupt this post to tell you I’m about to ramble, complain, and bitch, blah blah blah – so if you want to skip the rest, go right ahead. I promise the next post will have stories and photos of Boo.

I’ve moved the rest of this post to my new blog at writing.com – here is the link if you want to read on, and more, about things not necessarily Boo-related.

https://www.writing.com/main/books/item_id/2302924-The-Other-One

First, for full transparency, I have worked in the Independent Living (IL) disability community for nearly 7 years.  I am very familiar with the IL movement and its philosophies, and I wholeheartedly agree that all people with disabilities deserve respect, dignity, and the same rights as those without disabilities.   As an individual, I advocate with and/or financially support many disability organizations and initiatives, including the NYS Disability Rights Hall of Fame, Fair Pay for Home Care, National Alliance on Mental Illness, the Brooklyn Center for Independence of the Disabled, the National Council on Severe Autism, and the Disability EmpowerHer network.

Further, I am expressing myself as an individual and not a representative of any organization.

I am a woman with disabilities as well as the parent and legal guardian of my 21-year-old son, Jonah. If you are new to this blog, I’ll tell you Jonah is an engaging young man with a great sense of humor. He loves music, walks, car rides, trains, swimming, hanging out with his caregivers, and visiting with his parents, among other things. Jonah is verbal and usually expresses himself in short phrases. He also has severe/profound autism, severe intellectual, cognitive, and developmental disabilities, glaucoma, and aggressive/violent behaviors. 

I recently received an anti-guardianship letter in my work email. After reading the letter, I decided to contact two members of the organization’s board to ask questions and offer a different perspective.  During both of those conversations, I was invited to present my thoughts on guardianship, express concerns about their hardline approach to guardianship, and relate my own journey in obtaining guardianship for Jonah. I felt heard by both of these individuals, and they both agreed that further conversation is needed. 

They subsequently brought my concerns to the board at large. I received an email from a board representative in which it was incorrectly assumed I needed instruction about the nature of IL and its mission. I was not asked any questions about my situation, nor was any interest expressed in my voice. After I replied to the email and tried to explain myself, I received an answer assuming I was writing solely as a parent in need of edification about Supported Decision Making (SDM) as an alternative to guardianship. Had that board representative taken the time to ask about Jonah, it would have become apparent that SDM is not an appropriate solution for him.

I decided to respond here, and talk about a few other things while I’m at it, as I don’t wish to attack any individual or group but rather address some issues I’ve observed about the disability community in general.

I am somewhat familiar with SDM but to learn more I visited the SDM website link provided in the email. I reviewed the information and watched the videos, each of which profiled an individual with disabilities making complex life choices with assistance. In every case, those profiled had far greater cognitive, behavioral, developmental, and intellectual abilities than Jonah.  I am not underestimating my son. Jonah, and many others like him, simply do not possess the ability to have conversations about decision-making, to weigh the consequences of their actions, or to formulate goals, no matter how diligently they are guided.

Jonah has his own room in a house at a residential school for individuals with similar severe disabilities and self-harming/aggressive behaviors.  He needs 24/7 supervision and supports, and he requires a restraint protocol for his violent behaviors. Anti-restraint and anti-congregate care rhetoric is ubiquitous in the disability community. I’d like to hear a solution in lieu of restraint while being physically attacked by Jonah or any other individual with severe autism. I’d like to know where we can house and educate our children when our windows and walls are destroyed, our families live in constant fear of physical injury, and our children are kicked out of special needs day schools because of violent and/or self-harming behaviors which cannot be mitigated.

With the right support, some insist, everyone can live independently in the community.  That sounds great, except the level of support Jonah needs is not only unavailable – it’s nonexistent. In fact, he is ready for an adult program and there is currently nowhere for him to go. These realities do not make me pro-institutionalization, pro-congregate care, pro-restraints, pro-guardianship, or pro-nursing home. I am frustrated when parents are dismissed as short-sighted or, worse, are attacked by those who seem to believe there are no people with severe autism and severe behavioral/cognitive disabilities. There is a pervasive and condescending anti-parent tone to many disability conversations and conferences; while I agree that choices made by an individual should supersede those of a parent, parents need not be perceived as enemies by default.

I most certainly support the right of all people with disabilities to practice self-determination. But possessing the right to do something isn’t very useful if you don’t also have the ability. Some individuals with disabilities simply can’t make the choices that the disability community so ardently insists they have the right to make. I challenge anyone to offer Jonah SDM services.  I challenge them to make a video about Jonah, and in that video present important life choices to him, using PECS or any other means of accessible communication.  Please quote his responses, verbal or otherwise.  And don’t forget he may physically attack you at any time during the process.

Of course, I wouldn’t expect anyone to do any of that.  People like Jonah – and those more severely impaired than Jonah – don’t fit into the preferred narrative. It’s easy to see why. Their dependencies are inconvenient and their stories aren’t pretty. Most autism groups look right through them, and most self-advocacy networks seem embarrassed by them. Too many disability organizations claim to represent ALL people with disabilities – but they don’t want people like Jonah on their websites.  They don’t want people like him in their videos.  They don’t want to see people like him at all.

To deny the existence and experience of individuals like Jonah is an egregious offense on the part of any disability community that calls itself inclusive.  If you refuse to acknowledge him, you’re not alone.  The significant population of severely autistic/profoundly intellectually, cognitively, and behaviorally disabled individuals is almost always overlooked.  I’m used to that.  But I’m tired of seeing them swept under the rug during these important conversations.  It’s as if we advocated passionately to get these individuals out of workshops and Willowbrook, then turned our backs on them completely.

One can support the IL movement AND allow for guardianship, restraint protocols, and differing living situations if necessary and, most importantly, where there are no workable alternatives. These things are not mutually exclusive.  I’m proof of that, and I’m deeply disappointed that anyone in the disability community needs reminding that people like Jonah exist. Their unique needs are just as valid as those with higher level cognitive, behavioral, and intellectual abilities.  It’s important to remember they cannot advocate for themselves to say so – which makes them all too easy to ignore. 

If the very disability community to which they belong won’t acknowledge them, who will?

Until the National Council for Severe Autism (NCSA) was formed, I didn’t feel people like Jonah were represented anywhere. NCSA’s guardianship position statement says, in part: Guardians provide an invaluable role in maximizing the quality of life of severely autistic individuals, and NCSA supports guardianship as a fundamental protection for this vulnerable population. The statement also points out some important concerns regarding SDM.

I stand by my decision to obtain guardianship of Jonah as the best and most caring, logical way to ensure he enjoys life as independently as he is able, with dignity, in the least restrictive environment. 

I am not asking the disability community to change its intent to ensure people with disabilities have the right to live and work independently in the community, lead others, and have self-determination.  I agree with that important mission. I also support the fight for fully accessible communities, and I hope someday my son can live in the community with the supports he needs.

In the meantime, I do wish to see kinder, more respectful and open-minded discourse with individuals who question a disability organization’s stated beliefs. I do wish to see changes in the disability community’s thinking and rhetoric to reflect full inclusivity, crafting language that acknowledges all populations of individuals with disabilities and provides exceptions to some of the hardline beliefs which, as they stand, are both exclusionary and ableist.

Nothing about us without us.  That means all of us.