The Never Normal

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…

Read Full Post »

“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

Read Full Post »

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 EmpowHer 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 and developmental disabilities (I/DD), 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 I/DD. 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 I/DD 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.  

Read Full Post »

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!

Read Full Post »

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):

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!

Read Full Post »

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!

Read Full Post »

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!

Read Full Post »

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!

Read Full Post »