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Posts Tagged ‘hiking’

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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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

 “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…

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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.

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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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