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above and beyond

Posted in Uncategorized on October 8, 2021| 4 Comments »

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

From Anderson:

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

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

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

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

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

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

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

Congratulations, Briana!

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waking afraid

Posted in Uncategorized, tagged , , , , , on July 19, 2021| 5 Comments »

For the past few months, I’ve been waking up frightened, as if from a nightmare…but no nightmare that I can remember. Just writing about the fear brings it back in a palpable, physical way. Nearly every morning, I awaken and am immediately freaking scared. My heart thumps and skips, racing off the beat. My shoulders raise up high, every tendon stretched taut. I feel my jaw tighten and my neck stiffen. My breath can’t catch up to itself, the fear multiplied somehow in the knowing there’s really nothing to be afraid of.

To move past it, I play my Serenity app meditation, following the guidance of a woman with a soothing British accent for 10 minutes to breathe and practice silencing the mind. Some days it helps, other days it just takes the edge off. Sometimes I have to take a 1/4 of a klonopin. Sometimes I can distract myself with an audio book or a movie. Usually the fear dissipates as time passes, but some days it sticks around, relentless. Breathing helps some. By that I mean deep breaths with affirmations attached – breathe in the calm, the love, the peace….breathe out the fear, the anxiety, the hurt. It can feel overwhelming and exhausting.

I’ve had more successful visits with Boo, at least.

In this photo, Jonah almost looks like a regular kid visiting with his mom, maybe on his college campus during his sophomore year. Maybe he’s telling me about a professor he loves, or a person he likes and wants to date. Maybe we’re going out to dinner with his dad.

In reality we have just returned from a campus walk, and he’s about to go back into his residence, and I won’t see him again for a while. He can’t tell me about his teacher, or what he’s learning, or how he feels about anyone. But I know what songs he likes and doesn’t like, because on every visit I hand him my phone, after I’ve opened YouTube and put on Watermelon Sugar by Harry Styles to start. He holds the phone and it plays related songs as we eat at the picnic table then walk the campus. The app has created a playlist he enjoys.

During our last visit, however, he must have selected something by accident because Led Zeppelin started playing. Within 5 seconds he frowned, handed the phone back to me, and said help. I laughed. Jonah is definitely not into classic rock.

One morning last week he had another violent aggression, this time toward Briana and another staff member. They were walking him up to campus from the residence and Briana was dealing with another student who was acting out. I guess Jonah saw an opportunity and went for the other staff member while Briana was distracted. They ended up in a puddle on the asphalt, struggling to free Jonah’s grip on the staff’s hair. He bit and scratched and Briana had to scream for help. Luckily someone heard her and came running to assist; they brought a mat to put under Jonah’s head. Still, everyone got hurt. Briana told me later how unnerving it was that he growled like an animal and had “dead eyes.”

From what I understand, there was supposed to be someone (or a few people) from the school to walk down to the residence and help with transitioning between the residence and school building – and they were not there. I was very upset and called the assistant principal to talk about how to prevent this kind of situation in the future. She said they would find out what exactly happened, and added that staff is equipped with walkie talkies to call for help. If you’ve ever been attacked by my kid, though, you know there is neither time nor opportunity to reach for a walkie talkie, let alone press the correct buttons and request help.

Jonah’s attacks are instant and severe, like a seizure. I suggested they provide staff with something like one of those life-alert buttons you wear around your neck. Desperate times call for inventive measures. And though I was assured someone would be calling me back, no one has contacted me yet. I know there are serious staffing shortages, and I’m glad Anderson has put a policy in place where no staff makes less than $15 an hour. But there’s got to be a better system when you’re dealing with a person whose history includes violent aggressions. Jonah shouldn’t be left in the care of two female staff members for any length of time. I’ll give the school a call today to see what’s what.

I got Jonah some new Sketchers sandals, but he prefers these clunky slip-ons with ankle socks. Go figure. He has been swimming in the campus pool this summer, thank goodness, as he still loves the water and is happy when in it.

I want Jonah to be healthy and at peace. I want to know everyone around him is safe. I want to let go of the aching fear doggedly pestering my every morning. Is the fear related to Jonah? I don’t know. I haven’t been the same, really, since October 9 of 2002 when my best friend Gina suicided. Jonah was just 7 months old then, and I was already suffering from post-partum depression.

When Gina left the planet, everything kind of caved in. Andy was forced into the impossible position of keeping our family functioning. And then our baby son wasn’t developing normally, and that of course became a bigger and bigger problem. Fast forward to the beginning of this blog, when Jonah first said “swat” and everything reaaaalllly started falling apart.

I don’t feel like I’ve taken a stress-free breath, or felt comfortable inside my body, or felt “normal” mentally, in nearly 20 years.

Now, new symptoms like the fear are arising – a twitching in my left eye, heart arrhythmia, and a strange feeling on my left side just beneath my ribcage like something is growing or “extra” in there. I went for an ultrasound on Thursday and am awaiting the results.

As much as I am afraid and for whatever the reason, I remain grateful for what I – and Jonah – have. And I’m going to see Guster at Red Rocks in Denver soon, so there’s that to look forward to.

I have friends who also have the morning fear, or pervasive anxiety. I wonder how much is Covid related, given the upside down existence we’ve all been living and its impact on our lives. If you have the fear or anxiety, please know you’re not alone. Take deep breaths. In with love and peace, out with fear and pain. In, out. Repeat.

May today be an excellent day, friends.

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out like a lamb

Posted in aggression, Anderson School, behavior, Kennedy Krieger, The Anderson School for Autism, Uncategorized, tagged , , , , , on May 3, 2021| 4 Comments »

So I wrote a poem a day for National Poetry Month (April) – and it was a good re-exploration of creative writing for me. It’s been a while (probably 15 years) since I wrote poetry with any regularity. They say the writing saves the writer, so though people will never be knocking down doors to read my amateur poems, they have value for me – as outlets, if nothing else. Or reminders of who I am, what I enjoy. I love writing.com, where I have a portfolio of stuff (as winklett, of course).

Last week I attended part one of the 3-part National Council on Severe Autism (NCSA)’s free webinar series: Severe Behaviors, medical support. It was a unique experience in one particular aspect; for the first time, I was not the one with the most severe autism scenario. I’m used to people who are shocked and/or outraged that we put our son in a residential school. I’m usually the “horror story” of the bunch.

Not this time.

Most of the webinar was conducted by doctors discussing medical interventions, and they presented different scenarios they’d seen in the autism world. The severity of some of these situations was unimaginable, even to me. There are children who smash their faces into the ground and the walls until they are bloodied and broken. One child gouged his eyes and detached both retinas. The mind boggles. It broke my heart and I’m haunted by their stories. I don’t think I can ever again come here to bitch and complain – at least not the way I used to, ending every post with some stupid sad statement when all the while my son is safe and (relatively) healthy and happy.

Some of the individuals the doctors mentioned have been helped with electroconvulsive therapy (ECT) treatments (what they used to call electric shock therapy). I don’t know a whole lot about it yet, but I just bought the book Each Day I Like it Better, written by Amy Lutz (NCSA’s vice president). Amy’s son had aggressive and self-injurious behaviors which were successfully mitigated using ECT. (Yes, there is another Amy with another Jonah – and her husband, believe it or not, is Andy. You can’t make this stuff up).

I’m looking forward to reading her story, and I’m looking forward to the next two parts of the Severe Behaviors series. NCSA’s got all this information that simply didn’t exist before, and I’m all ears.

This past Saturday I got to visit Boo again. Halfway there, I realized I forgot to bring his assortment of DVDs. He’s never chosen anything but Jungle Book on these visits, but I like to offer him some choices. I decided to avoid a potential problem altogether and try the visit outside, since the day was warm-ish and the forecasted rain never arrived. Of course I brought McDonald’s and a strong companion to help me. We ate on the picnic table just outside his residence while he played music on my phone.

After lunch, I asked Jonah if he wanted to do a campus walk. He jumped up in answer, immediately ready to go. I took the risk and let him keep my phone. He was surprisingly okay with handing it back to me when he needed help, but he also could navigate a lot of it himself. We listened to Twenty-One Pilots and Harry Styles and Sir Sly, and he didn’t walk too fast for me like he sometimes does. At one point, after un-pausing a song for him, I handed the phone back — and he said thank you! For the first time: unprompted, unprovoked, and entirely of his own volition. I know Briana’s been working hard to help teach him but still I was amazed.

Hell, the sun even came out for us.

When we got back to the house, he allowed me a big hug and a kiss before he went inside. I couldn’t have asked for a better visit. The only thing I would have liked was more time with him.

Jonah does well in school these days, too, now that the kids are back in the classroom. Hs teacher says “He willingly does academic work and tasks given to him, with a little reinforcer at the end.  Jonah also expresses very well if he does not want to do something but I can usually tell him, you can have x amount of time then we will do work.  This seems to work well right now.”

Briana sent me his goals at the residence:

· Jonah will use a broom and dustpan to sweep piles of debris.

· Jonah will put clothes in the dryer, add a dryer sheet, clean the lint trap, and follow directions to push buttons/turn dial for correct settings.

· Jonah will put away cups and dishes

She thinks he’s capable of meeting the goals with some environmental cues and staff support. I think so too!

I’ve been trying to talk to him on the phone a few times a week. When the staff person answers, I always ask them to please find out if Jonah wants to talk on the phone. God knows I hate talking the phone, to anyone but him anyway. Most times Boo comes right over to talk.

Last night he sounded happy. Our conversation is of course limited, but Jonah does say “good” if I ask him how his day went, and he’ll tell me miss you, love you, and bye, if I say it first. He hangs up abruptly, all done.

Since I last wrote I’ve been on 2 or 3 more hikes. But I hurt my Achilles heel on my left foot and gave myself a break for a bit. Then I went out again this past Saturday. I’m so used to winter hiking that 50 degrees felt like summertime. It seems my limit is about 3 1/2 miles. Anything past that and my left knee hurts something awful, especially going downhill. Either that or the whole leg goes kind of dead – not sure how else to explain it. The trekking poles become crutches. I ain’t no spring chicken, but the woods sure do feel like home. I’d love to live in the middle of the forest someday. Maybe when I retire.

Of course it all depends on where Boo ends up, and we won’t know that for another year or so, I think. I want to be closer to him eventually. In my hoped-for future he is aggression free and I can visit often.

We’re working on it!

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national council on severe autism

Posted in Uncategorized, tagged , , , , , , on March 28, 2021| 6 Comments »

I just found NCSA, the National Council on Severe Autism, last week. From their website: Pursuing recognition, policy, and solutions for the surging population of individuals, families and caregivers affected by severe forms of autism and related disorders. 

That’s Jonah! That’s us! I haven’t been this excited to find an organization since never.

Last week I attended their policy summit, which was full of information and included panelists from many different autism organizations. There are other webinars coming up; they’re all free (and recorded if you can’t attend). I’ve signed up for Treating Challenging or Dangerous Behaviors, Part 1: Medical Support, which features 2 doctors from Kennedy Krieger and one from UCSF, discussing everything I want to know – what meds and interventions are working with people like Jonah. I’m drinking up NCSA’s resources like a thirsty camel.

This is excellent timing, too, because Jonah’s blood Clozaril levels have stayed high even though they lowered one of his doses, so they’ve lowered yet another dose. This is tricky territory; of course we don’t want the frequency or severity of the aggressions to go back up, but we want to keep Boo safe too.

The other day he sat in his room and sobbed tearlessly for 15 minutes. Briana texted to tell me he’d refused her offer of a campus walk, and when she returned to the house, he was in the midst of the crying jag. I asked if maybe he wanted to do a video call, but she didn’t think it was a good idea. When he cries like that, she told me, it’s usually because he’s ramping up to attack staff. I feel special kind of helplessness on these occasions. There’s nothing I can do to help him or make it better. At least I didn’t have to hear him cry, for my son’s sobs are long and loud and anguished. They break my heart.

I did get to see him again, on his 19th birthday, March 7th. I brought McDonalds, of course, and a piece of special cake my friend KP made sure to get to me. Jonah was okay until we went inside the Visitor’s Center and up the stairs, at which point he greeted me with a splayed hand to the face. My glasses went flying, just like in the old days, and he grabbed a chunk of my hair. Of course I had a strong companion with me – I daren’t visit alone – and he disengaged Jonah without much trouble. As aggressions go, it was only a 2 or 3 on the Richter scale, and the rest of the visit was fine. Our cinematic entertainment was the familiar Jungle Book. I think Jonah would have watched the whole thing, were our visit not limited to one hour. It was so good to see him. He even let me hug him at the end of the visit.

Even as I type this Jonah is just leaving the ER. Briana came to the house on her day off because staff was concerned about a boil on his neck. She and Caroline, another staff member, took him over to Northern Dutchess Hospital. I knew he had a bump, but I guess it was getting bigger and they were worried. The ER doc was all set to remove it with local anesthesia, but Briana explained Jonah would need to be fully sedated for that. They decided the risk of putting him under wasn’t worth the benefit, and they’re going to continue to tackle it with more meds. I guess Boo was wonderful in the hospital, so they took him through the McDonald’s drive-thru afterward. He probably really dug the car ride, too. I hope he enjoys his yummy food and has a good night.

I’ve strayed into the woods again to hike a few more times since I last wrote, and also went through a bout of angry depression that birthed the last post’s poem and started me to writing again. Since 2002, I’ve had a portfolio on writing.com (where I am winklett, of course) but I haven’t written much in years. Now the words are flowing again, mostly poems and a short story or two. The woods and the writing are positive forces in my life, and I am grateful for them both.

My phone *just* rang – it was Briana, sounding distressed. She said she had bad news. I guess somewhere between McDonald’s and the Anderson campus, Jonah attacked Caroline. It was bad, and it took 20 minutes for the two of them to get Jonah under control. Somehow they managed to drive back to the house, where 6 staff members are ready in case he attacks again.

See, this was almost a positive post. Almost happy. But no. Here we are again. The ever-loving shit show.

I didn’t find NCSA a moment too soon.

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distances

Posted in Uncategorized, tagged on February 21, 2021| 2 Comments »

 “Heavy as the setting sun; yeah I’m counting all the numbers between zero and one.”
~ & Run, Sir Sly

I have managed one video call and two in-person visits with Jonah since Christmas – once, like before, at the Visitor’s Center on the Anderson campus, with similar success. Last time, I asked him every so often if he wanted more video or to go back to his house. More video, he kept saying, until our time was up. This time, he wanted to leave about 30 minutes in.

20210115_121025 He smiled when I asked him to, but his real resting face is far more disinterested…

20210115_121024

He was very half-hearted about his McDonalds, too.  Meh.  Then he said “go poop,” and proceeded through the swinging door into the bathroom.  I hesitated, unsure how much he could accomplish in there by himself, post-poop.  At Andy’s apartment it was standard procedure for Jonah to go directly from the toilet into the bath tub.   I gave him maybe 30 seconds, then called “boo?” and walked in.  He had all his clothes off from the waist down – shoes, socks, sweatpants, underwear  – all in a pile on the floor.  “Help wipe?” he asked, offering me his backside.  I was pleasantly surprised that he’d done this to the best of his ability already, so my efforts were more symbolic than necessary.  He washed his hands and dressed quickly, resuming his position on the chair with Jungle Book playing on the TV.  I’ve since ordered him a few train documentaries to try; I’m not sure if he’s as into trains as he used to be.  He can hear the train’s whistle from the school, though he hasn’t been on a car ride to see one in ages.

When Boo decided he wanted to leave, he meant right now, though he waited with something like patience for me to gather up our things and follow him out the door.

The second time I got to see him was at his regular glaucoma appointment up here in Albany.  As usual, two Anderson team members accompanied him; I had gotten special permission for two of us to go with him into the office, given his history of violent episodes there.  He did wonderfully, though, and sat willingly through various exams and machines, used to this routine.  He even wore his mask while the doc was in the room.  She said his pressure was high in his left eye, but that’s his blind eye and not of as much concern as the “good” right eye.

20210107_085258 It wasn’t until I took this photo that I noticed he had two different shoes on.  I know the staff at his house are helping him get dressed very early in the morning for these morning appointments.  It takes 90 minutes to get there, so they’re helping him put on his clothes in the dark.  I was a little annoyed by his 2 very different shoes, but no big deal.  Then I looked at the shoes more closely, though, and saw that one of the shoes wasn’t even on the correct foot.  Try walking around like that.  I was disappointed, to say the least. I could tell that the team members there were embarrassed, but they’re not the ones who ensure he puts his clothing and shoes on correctly.  Thank God my mother doesn’t come to these appointments anymore; there would have been hell to pay.  I took it in stride, however, pun intended, and simply told Jonah’s house manager about it; she assured me it wouldn’t happen again.  She’s awesome, and I’m sure it won’t.

But at the heart of this is a reality I don’t like to think about.  His violently aggressive behavior, often out of nowhere, is at the core.  For example, it’s not that I think the staff person who put his shoes on is incompetent, or even lazy.  It’s that they probably didn’t put on his shoes at all.  Likely he was left to dress himself, lest he attack them.  For female staff especially I envision they’re giving my son a wide berth at all times.  Sometimes I imagine him largely left alone, distanced and unengaged out of fear, and it brings a sad desperation to my thoughts.  He’s still doing well in school, I offer myself in an attempt to self-soothe.  It won’t always be this way.  I know several people there who love him.  Briana loves him, is amazing with him and for him.

Then a nurse called me one day last week to tell me his clozapine levels are very high – 869, to be exact.  A quick Google search tells me a range of 350 to 450 ng/mL is considered high, which was alarming.  High levels are associated with greater risk of seizures along with a host of other possible effects.  So the immediate plan is to lower his 11:30am dose.  It isn’t an easy decision because clozapine (aka Clozaril) is the only thing that’s worked to mitigate his aggressions, which are infrequent lately but very severe.  Pre-Covid, he had 18 months with no aggressions, I remind myself.  I thought they were gone altogether.

As an aside, it took me far too long to figure out how to post this using the “classic” editor.  I think the new one is awful and clunky.  I’ve lost my patience and most of the energy to write.

I’ll probably try to see Boo again near his 19th birthday on March 7th.  I haven’t heard from Andy, though I know he talks to my mother on the phone once in a while.  This sometimes feels like betrayal in a couple different ways.  But their relationship isn’t my business, and if I resent it, that’s my problem.  I’ve been depressed in the way we all have since the pandemic dropped its curtain on the play.  And in that tired-of-winter way, where everything is ice and slop and slog.  Now, also, like some archetypal Helpless Mother, unable to intervene on her child’s behalf or orchestrate a future where his health and everyone’s safety coexist and neither need be compromised.

20210214_151519Getting outside keeps me sane.  Three times so far this winter I’ve donned snow pants and boots, hiking poles, and sometimes crampons, to tackle a few different Catskill and Adirondack trails.  Most recently it was a long loop trail at aptly named Amy’s Park near Bolton Landing, which was a steep hike up in the beginning and a test of endurance after that.  The trail is rated moderate but that’s without 20 inches of snow and ice to tromp through.  Granted, there were footsteps to follow and a well-marked path, but by the end of it I was damn near using my poles as crutches.  Took 5 hours to go up and around that lake.  I bitch in jest, though, for it’s saving my soul and spirit to be in the wonderful woods, all silent and piled with snow.  At first I feared I’d shiver in the cold, but so long as there’s no wind, I’ve yet to be chilled despite temps sometimes in the teens.  Hiking is a workout, and you stay quite warm just moving along.

20210214_091453

See how the snow has crafted a feather from this conifer?  All over the forest, Winter makes subtle shapes and images with an artist’s hand.  In places, I see boughs and branches pressed down where deer have made a recent bed.  Sometimes trees have scattered holes drilled deep by woodpeckers, and along the marshy lake, young saplings lay victim to beaver teeth axes.  The poetry of nature humbles me and brings calm.  I need to remember how much it helps, lest I stay hermit in my house.  So easy to stay hermit, working almost entirely from home.  So easy to live one Groundhog Day after another.  So easy to lose hope.

If you feel this way and are reading this, please know you’re not alone.  This too shall pass.  Spring is coming, albeit slowly.  It’s science.

Hang on and forge ahead.

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merry christmas

Posted in Uncategorized on December 25, 2020| 3 Comments »

From our family to yours, with humble thanks for your support and encouragement throughout this and every year. It means more to me than you’ll ever know.

A special thank you to Briana for the wonderful photo of Boo!

Love,

Amy & Jonah

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the newest normal

Posted in Uncategorized on December 21, 2020| 5 Comments »

The story has a better ending than beginning, fear not.

After talking to Briana, I scheduled both a zoom call for Wednesday the 16th and a campus visit on Friday the 18th at the visitor center. When the time for our zoom call rolled around, however, Jonah didn’t want to talk and of course we didn’t want to force him. I began to question the wisdom of the in-person visit and was further distracted by a huge snowstorm that dumped more than 2 feet of snow Wednesday night into Thursday.

But then I decided to try it. Nothing ventured, nothing gained. I knew I’d need someone with me – someone relatively strong, reasonably brave, willing to be attacked, and ready to sacrifice half their day to this endeavor. The list of people fitting this description included two obvious choices; when the first couldn’t do it, the second stepped up. And so it came to pass that on Friday, December 18th at 2pm, I arrived at Jonah’s house armed with my companion and a 2-cheeseburger meal from McDonald’s. Briana brought Jonah out and escorted us to one of the village center’s second floor “apartment” doors. As she unlocked the door and let us in, Jonah immediately threw his coat on the floor, but she wasn’t having it. After her admonishment, he picked up his coat and put it on the couch. Briana gave a thumbs-up and left us to our visit.

The mock apartment included a spacious living room area, complete with a large TV and DVD player, a couch, loveseat, and some single chairs. At one end was a window, and by the window a small table and chairs. Behind that was a kitchen, complete with microwave and dishwasher, garbage can, sink, and cleaning supplies. Across the room from the kitchen was a large bathroom with a swinging door.

When I tell you it was the best visit I’ve had with Jonah in recent memory, I don’t mean to paint an extravagant picture. Jonah ate his McDonald’s and watched Jungle Book. I did not give off the please don’t flip out vibe. I brought a large deck of cards, part of a game he wouldn’t care about. He grasped and tapped them throughout our visit.

Every so often I asked him if he wanted to go back to the house or if he wanted more video.

“Video,” he answered each time, calmly. When he wanted more drink, he asked “black soda?” and at one point he said “bathroom” and walked past me through the swinging door to pee. We hung out in the same room. I understood his words. It was beautifully mundane.

He moved once from the big couch to the love seat, content to hunker down and hang out. We’d reserved the room from 2-3pm, but as 3pm approached, it became apparent Jonah was settled in. I texted Briana to ask if we needed to vacate at 3, and when she said yes, I started a 5 minute countdown for Boo.

(He’s holding the cards I gave him)

He did great. I cleaned, packed everything up, and we trooped down the stairs. “Walk,” he said, so I took a side path to extend our time a bit. Back at the house, Briana came out to get him; I managed a quick hug before he went inside.

When the door shut behind my boy, I felt a rush of relief. We’d done it, somehow, incident-free. Maybe Jonah had been in a particularly good mood. Maybe all the stars were aligned, or Divinity intervened. Maybe we just got lucky. Whatever the case, I’m amazed and happy. I reckon I’ll try another zoom call soon, and aim to visit in person again sometime in January.

One note about Andy – we stopped visiting together. Recently, he told me Jonah doesn’t care if I visit, and I got upset: He called today and apologized to me, offering a clarification: When he said Jonah didn’t care if I visited him, he meant we. As in, Jonah doesn’t care if we visit. Fair enough. I wish Andy happiness and only the best of everything. I hope we can visit Jonah together someday.

I’ve been crafting with the rocks again, making some into magnets for Christmas gifts. I painted a bunch more to hide in the park.

One day before the snow, I was walking Jack through the park right when the school kids were on recess. Most of them came over to say hello and pet him, and I asked if any of them had seen painted rocks around. They got all excited and started talking at once. Yes! I got an alien! I found a fish!

One girl asked if I was the one who leaves them. I smiled behind my mask and answered yes – and I tell you those kids went freaking nuts. Jumping up and down, running to tell their teacher. One serious lad looked at me in earnest. “I’ve been trying to figure out who it was for weeks,” he said, like he’d just discovered Santa mid-chimney. I was so happy. I’ve been thinking about opening a shop on Etsy, but honestly I don’t need the money and I enjoy the idea of making random people’s days a little brighter.

Before I left the kids that day, I asked them if I should keep putting rocks around the park. YES! YAY! they all shouted in affirmative chorus. So I managed to leave 5 or 6 more before the storm buried everything. I figure if I make more magnets, I can put them on the basketball court fence or street sign poles, high enough to stay out of the snow but low enough for kids to see.

For now I’m just resting in the knowledge that I can see my son successfully. It’s possible for us to forge a path ahead. And really, that’s about all I can ask for from the remainder of this crappy-ass year.

Happy holidays, my peeps. Bring on 2021!

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asking for your help

Posted in Uncategorized on November 20, 2020| 1 Comment »

Quick post today which is really a request for my work, the New York State Independent Living Council (NYSILC).

We’re conducting a post-election poll to analyze voting experiences of New Yorkers with and without disabilities, and ultimately identify areas of improvement to ensure voting is an accessible experience for everyone.

If you live in NYS and voted in the presidential election, you are eligible. All results are anonymous, and the survey is quick and easy. Please take it, and share with as many people as possible.

https://www.surveymonkey.com/r/KRZ5CTJ

Thanks guys!

I’ll be back soon with news of Boo.

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Repeat

Posted in aggression, Anderson School, autism, behavior, Uncategorized, tagged , , , , , on October 26, 2020| 2 Comments »

We were enjoying our off-campus visits with Jonah.

Until we weren’t.

One weekday visit, Jonah attacked Andy in his apartment. Andy called for help, and luckily his landlord was outside and came running. It was a violent attack, and it scared the hell out of Andy. He may not have been able to subdue Jonah on his own. Then Jonah attacked Briana at the residence, and the other staff member at the house couldn’t get him off her. She called on the walkie-talkie for additional staff. She was bitten several times, and I don’t know what else – but she was out of work for several days. The last straw came in the car, on another weekday visit. Jonah wears a safety harness, but his legs and arms are so long that he was able to kick and grab at Andy. Andy almost got in an accident pulling over, then nearly got hit getting out of the car.

It’s just not safe to take Jonah off the campus anymore. We had a behavioral team meeting and we urged them to place Jonah back on a 4-person takedown protocol. We gave permission for Anderson staff to record Jonah’s aggressions (though how they’re going to do this is beyond me). And we made our case for the necessity of this move, though in my eyes it’s clearly evident.

And so we’re repeating the “slow on the driveway” visits we had earlier in the summer. For the past two weeks, I’ve met Andy on campus to get Jonah. We bring him a breakfast sandwich and he eats it on the picnic table outside the residence. Then we drive him around and around and around the campus while he chooses the music. This past Saturday he tried to grab me from the backseat of the car. If I had my long hair, he would’ve gotten me…but I pulled away quickly and escaped injury. Andy pulled over, I got out, and we gave Jonah a “time out” from music and car ride.

Andy says, “Jonah, I want you to have safe –“

Jonah: Hands.

Andy: And?

Jonah: Feet.

Minutes later, my son and I are singing along to “Watermelon Sugar” and smiling. Andy guides the car along the campus roads, pulling over and getting out every so often to take on a hygiene task, breaking them up so as not to overwhelm Jonah. One stop is for teeth brushing. Another is for cleaning his ears. Another to clip his nails. Clean his hands and face. Pop a pimple. After an hour or so, we tell Jonah “two more songs and then campus walk.” One more loop. Time for walk.

We knock on the residence door to tell them we’re going on the walk. The first time, Briana came with us, bringing her walkie-talkie. This past Saturday, we walked him around the campus on our own, making sure to bring our cell phones to call her if Jonah flipped out. He didn’t.

Once again, we are navigating new waters. If the weather doesn’t cooperate, there are mock-apartments at the campus center for us to use. We’ll have to do the best we can.

During all of this eating, car-riding, and walking, Jonah wants reassurance we are coming back. “Repeat?” he asks. This means he wants us to tell him when.

Andy: Daddy’s coming in 3 days. Daddy’s coming on Wednesday.

Jonah: Repeat?

Andy: Daddy’s coming in 3 days. Daddy’s coming on Wednesday.

Jonah: Repeat?

Andy: Daddy’s coming in 3 days. Daddy’s coming on Wednesday.

Jonah: Repeat?

Andy: Daddy’s coming in 3 days. Wednesday.

Jonah: Repeat?

Andy: Jonah, listen to me. Daddy’s coming in three days. Daddy is coming on Wednesday. Now be quiet and listen to the music.

This might buy us a while. Half a song or so. Sometimes I provide the answers Jonah seeks. Daddy’s coming in 3 days, Boo! Daddy’s coming on Wednesday. Momma’s coming in 6 days. Momma’s coming on Saturday. I vary the pitch and tone of the answer, sometimes singing it.

“Repeat?” he asks again and again. The repetition of repeat is too perfect.

Andy and I adapt and settle into whatever new reality comes along with Jonah, to the best of our ability, changing it up as many times as is necessary, which in 2020 has been a lot.

Our son is tall and handsome in the autumn sun.

Whatever we have to do to keep him (and everyone else) safe and happy, we will do, of course.

I stopped pondering why he was able to go 18 months without aggressions and now they’re back – with a vengeance, as they say. I guess because of Covid. Plenty of breaks in routine and strange people. Months without seeing mama or daddy. Changing visits – first we can’t go off campus, then we can, now we can’t again. I suppose we were due for this.

First, there is a mountain. Then there is no mountain. Then there is.

Since the rise of Covid, I’ve gone from walking 2 miles a day on the treadmill to painting 2 rocks a day to meditating 2 times a day. I guess I’m still walking and painting, just not as much.

On my 51st birthday I started using this app I found called Serenity, which has 10-minute guided meditations. The first 7 are free; after that I was hooked, so I bought a 6-month subscription for 20 bucks. I don’t think I’m alone in saying meditation has always been difficult, the few times I actually tried it. My monkey mind provides a near-constant self-narrative comprised of visiting the past, predicting the future, critiquing myself and others, recalling song lyrics, movie scenes, and conversations, etc. But what I am learning allows for all of this. The goal is not to yank your mind away from the chatter but rather let it flow, gently guiding your mind back to the breath, back to the breath. I am breathing in. I am breathing out. I am breathing in. I am breathing out.

Repeat.

But there is so much more. Serenity teaches different ways to explore your mind – visualizing thoughts as words or pictures on a screen, recognizing types of thinking patterns as they occur to prevent fusing with them, practicing gratitude, fostering compassion, allowing both body and mind to rest. Stretch your arms, wiggle your fingers and toes, she says in her (Australian?) accent at the end of each meditation. I’m on my way to enlightenment, guys, 10 minutes at a time and enjoying the journey. I never thought I’d look forward to meditation but I definitely do, and find myself carving out more and more time for it.

Then I read Lovingkindness: The Revolutionary Art of Happiness by Sharon Salzberg, and learned how to send metta to myself and others. Then I read it again, and bought copies for 3 friends. I encouraged my peeps to try the Serenity app – I think there are 5 or 6 of us doing it now. It feels so good. What’s not to like?

I’m learning ways to sit in meditation on my own, unguided, each time creating larger and larger pockets of “silent mind.” It has been transformative. I think the greatest benefit is the cultivation of mindfulness. I practice noticing emotions as they rise and placing distance between them and my action/reaction or speech. I practice doing what I’m doing and being where I am – two things with which I’ve always had difficulty.

For example, when I am doing the dishes, I need to just do the damn dishes – not thinking about what I’m going to do after I do the dishes.

Now I am breaking it down even further… to just pick up a dish, then just pick up the sponge. Then just reach for the dishwashing soap, then just apply the sponge to the dish, and so on. Each task – and each piece of that task – met mindfully. What I used to write off as clumsiness really was me just throwing myself from task to activity without really ever thinking about what the hell I was doing.

In addition, I was rushing through Monday to get to Friday. Rushing through dinner to get to dessert. Rushing through things I thought of as “bad” to arrive at others I have labeled “good” – when all the while there is only the present moment. There is only now.

Ahhh, Daniel-san. If do right, no can defend.

I crack myself up with these eureka moments when I think I’ve got it all figured out. Go ahead, laugh. I’m laughing too.

When things ring true, though, I can’t deny the truths. I feel as though I am approaching life from a place of greater peace. And I can’t deny the results, even though I only have the faintest comprehension of the process. It feels good the way the walking and the painting feels good –and then some.

I come back to the breath, back to hope, back to love.

Repeat.

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slow on the driveway

Posted in Uncategorized on August 11, 2020| 4 Comments »

We can finally take Jonah off-campus, so I’ve been driving down on Saturdays to visit. Andy and I pick him up and take him to the apartment, just like before, only now we get our temperatures taken and answer a series of health questions at Jonah’s house before they bring him out. No visitors are allowed inside, ever. Anderson’s done a great job of keeping its employees and residents safe.

For a while, before they allowed us to take him off campus, we talked them into letting us put Boo in the car and drive him very slowly around Anderson, winding in and out of large empty parking lots and campus roads, passing the same people over and over, a placated Jonah directing the radio and CD player. It reminded me of that scene in Rainman where Raymond drives around the circle in front of the casino.

Maybe someday we can let Jonah drive slow on the driveway. Here’s to hoping.

We’ve been grateful Briana is such a caring, responsible, hardworking manager and caregiver. I know Jonah’s house isn’t an easy one, and there have been a lot of staff changes. That’s never easy for Boo; his 18-month long ‘pendulum swing’ of no aggressions is over. A few times now he has become very upset and attacked staff.

One pair of broken glasses. Two people bitten. Three takedowns.

We expected this – or Andy did, at least. I had imagined Jonah crossing a red-ribbon threshold to a future devoid of aggressions and attacks. But we’ve been through all this before. I know now the only thing we can count on is change.

It’s been hard for everyone, this brave new world, much harder for others than me. I see my privilege – white, wealth, and every other way. I work both my jobs from home, driving in to the office just one day a week – and even then, I’m alone. The office building is a wasteland of social distancing and no people, of mask signage and no one to cough. The cafe is closed. Construction workers are tearing the old empty bank space apart to make smaller office spaces – for whom, I have no idea. They crash and bang and grind and saw while I sit there by myself. It becomes surreal.

Everything is surreal now. For an old hermit like me, it’s not too difficult, really. I don’t have to leave the house, and nobody bothers me. My animals stay close by, and I put musicals on TV as backdrop for my workday. I’ve discovered Hamilton and re-discovered Rent. Today it’s The Sound of Music. I’ve started reading again, which usually means listening to audiobooks; my eyes are tired and strained. Right now I’m tackling Les Miserables, which might not work because the French names are so hard to distinguish. Who am I hearing about now? Wait, wasn’t that the other guy? It would be easier if I could read the words on paper. Maybe I’ll try something shorter and less, well, miserables.

Also I’ve been painting rocks with acrylic pens. A lot of rocks. Many many rocks. They piled up, naturally, and so I started hiding them all over the neighborhood. I place them in trees, on playground equipment, at the bus stop. I send them to friends, leave them for the mail carrier, gift them to people who may or may not want a rock painted by the neighborhood crazy lady.

It has kept me busy during all the Groundhog Days, especially those early first weeks of working from home. Now I’m on to painting alphabet and chess sets. I’m even tossing around the idea of opening an etsy shop. I’m no artist, but I’ve gotten better since late March and I reckon I do about as well as anyone else selling decorated stones.

Plus there is a meditation in it. When there is day after day after day of the same, I need the creative outlet. I can’t imagine a life where I am not painting and writing, dancing and collaging, arranging stones in streams and acorns on paths. They say the writing saves the writer; that feels about right with all the things I love to do.. I play my little drum and I grow a small garden (sage, cilantro, and parsely) and I bake banana bread. I paint my rocks and gift them to the universe, usually with little messages on the back: YOU ROCK or ROCK ON; SHINE or RISE or JUST KEEP SWIMMING. I hope I am adding some good to this world. I aim to, anyway. Plus be a good mama to Boo. That’s enough for now.

“Everything’s untouched but forever changed.” ~ OK GO

Hang in there, my peeps. We’re all in this together.

These I did for Jonah’s house…one for each kid, placed in the little garden out front.
Jonah’s is the whale, of course!

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