The Never Normal

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!

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!

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

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

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

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

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

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

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

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

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

I have faith it will be positive news.

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

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

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

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

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

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

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

So 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!

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

From Anderson:

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

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

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

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

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

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

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

Congratulations, Briana!