SQUIDALICIOUS
Time 2021-11-20 21:10:50Web Name: SQUIDALICIOUS
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SQUIDALICIOUS,Description:
keywords: description:[image: Selfie of me on a redwood trail
Leo is visible, blurrily, behind me.]I gave a live videopublic comment(at 1:19:49) at yesterday's IACC meeting, about the need for autism research and resources to serve existing autistic people of all abilities. The comment limit was three minutes, so this is the condensed version of my howling fury over how research is primarily currently sunk into causation and treatment, not quality of life or communication. Will post the video when it becomes available.
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My name is Shannon Rosa. I am the mother of a twenty-year-old high support autistic young man, and senior editor of the autism information and advocacy community Thinking Person's Guide to Autism.
My son is a thinking, feeling human being, like you. He deserves a good life. My husband and I love him dearly, enjoy his company, and do our best to help him feel happy, healthy, and safe.
However, it is challenging for families like ours to give our autistic loved ones those lives they deserve, as current public and private autism efforts focus disproportionately on theoretical unborn autistic people, rather than investing in best support practices for existing autistic people like my son. Per the IACCs own analyses, autism research funding is primarily funneled into to risk factors and biology, with less than 10% prioritizing lifespan issues and services. I do not understand how this is considered acceptable.
My son and the wider autistic community deserve to be living their best lives, now. They deserve family, caregivers, and therapists who understand how to help autistic people thrive, now. They deserve access to well-trained and -paid educators and support workers, now. They deserve medical professionals versed in best practices for treating autistic people, now. In one year, my son and his peers will age out of the school systemyet no existing federal, state, or local framework exists to transition to or support them in fulfilling and dignified lives as adults. We need those frameworks, now.
Even so, my family is lucky; we have decent autism services in our area, and we have the language, know-how, and socioeconomic advantages needed to access those services. At the same time, we all know that less-advantaged autistic people and their families are missing out on servicespartially or entirelyas are autistic people perceived as lower-support than my son, yet who still require significant accommodations. This is unconscionable.
Finally, we need to formally recognize that autism issues must have autistic guidance. My sons quality of life improved dramatically once we had access to autistic insights on supporting autistic people, and every autistic child and adult in this country deserve the same opportunities and benefits. I applaud the IACC for seating more autistic members, and hope autistic priorities will have a proportional influence on the IACCs outlook and directions.
Thank you for listening.
Shannon Des Roches Rosa
www.ThinkingAutismGuide.com
[image: Young white man with short brown hair,
from behind,hiking a wide trail under tall oaks.]2020 was, appropriately enough, the year in which my middle child turned 20. And despite the year's significant and unceasing horrors, which are being catalogued everywhere and which I do not need to list for you, I enjoyed the extra time I got to spend with my family, and specifically with that son. My crew and I are incredibly lucky, and I remain gratefully, painfully aware of that good fortune.
Because it's what we enjoy and due to a lack of other options, 2020 was, for me, a year of near-daily hiking. Most of it was with my 19- and then 20-year-old, some of it was with my eldest, some with my husband, some with my youngest, some with a combination thereof. It was all beautiful. We could hike a different trail each day in this picturesque, varied Bay Area, and never repeat ourselves.
Yet many of our cherished trails were destroyed or badly marred in 2020. Sometimes I felt like we cursed these places just by visiting them during this upside-down year, even though I know this mindset is both egotistical and silly. But consider that our redwood pilgrimage siteBig Basin State Park burned down the very day after we hiked it. Our favorite and frequented short coastal hike, Cascade Creek, burned black in that same CZU complex fire, whichcost so many Santa Cruz Mountains residents their homes and livelihoods. The Oat Hill Mine Trail, with its dizzying views of Napa Valley, and which my husband and I hiked just before lockdown, was partially burned in this summer's Glass fire and is closed until further notice. South San Francisco's Sign Hill Park was torched by teen arsonistswithin a month of our visit. And, for variety's sake, human remains were found in San Bruno Mountain park, shortly after we'd hiked there. Perhaps you can understand my unease.
Hiking also helps me grapple with one of this year's most devastating losses, the death of Mel Baggs. Mel's compassionate but unyielding advocacy on behalf of disabled people like (and also unlike) Leo can't be replacedbut we can keep spreading those teachings, like what self-advocacy actually means:
"Self-advocacy doesn't mean staff get to pat us on the head, use the right buzzwords, tell us what wonderful little self-advocates we are, and then chastise us or put us on a behavior program when we get angry at them about their controlling behavior."
As Leo and I continue to hike through the redwoods Mel loved, and as my son's laughter rings through the trees, as my heart swells because who couldn't be happy in the presence of such joyI hope that by doing our best to give Leo a good life and let him know how much he is adored, we are doing a small part to live Mel's legacy. Though we didn't do much else this year, I consider loving and being loved a win.
Bite me, 2020.
[image: Two photos: Left: Iz as a baby wearing overall made from marbled
green fabric; right: Iz right now wearing a face mask of the very same fabric.]
We're several months into mandatory pandemic face masking, and my son still can't wear a mask. It's not for lack of trying; he knows he's supposed to wear one, and we talk about how they help protect people from COVID-19 and why it is a deadly and contagious virus. When I put my mask on, he puts his on, too. And then, because the feeling of a mask on his face is intolerable for autistic sensory reasons, he takes that mask right off again. I don't know if he'll ever be able wear a mask for more than sixty seconds.
And this is why I am highly irritated byparents of autistic kids sayingthat if my kids can do it, then other people cant complain about wearing masks: It sets a dangerously ableist precedent for forced mask compliance. And for those arguing, He's talking about denialist maskholes, not making other autistic and disabled people to wear masks, you dont understand how compliance contagion works in the autism parenting sphere, or how stories like this get weaponized by ABA providers and others who work with people like my son. This example will be used to force autistic people to wear masks. And I'm pissed about it.
And yes, of course, some autistic people can wear masks given practice and patience. But others will never be able to, for a variety of reasons (some of which I wrote about in the Washington Post a couple of months ago). Still otherautistic people totally get why they should wear a mask, while simultaneously struggling with wearing one:
If you are responsible for supplying an autistic person's masks, then it's a good idea to try them on yourself, first, and try to determine if they are scratchy, or rough, or pull in weird ways. I personally can tolerate masks that go over my ears, but dislike those that cinch my skull. Gaiters may work for some, but they are also more permeable than a face mask and so reduce protection. Other autistic folks find that mask brackets help reduce a mask's sensory assault. I tend to go with the standard blue disposable medicalmasks: They go over our ears, the interior is soft, and Leo can put them on himself. But the ear straps do break easily, so I always have a backup mask with me just in case.If wearing a mask is hard for you, if it fucking sucks and you hate it but you're doing it anyway because you understand the evidence and importance, you're not a bad person and you're not making it up or imagining it. I get it.
Emily Paige Ballou (@epballou)July 14, 2020
Another mask stressor for us is that our county nowfines peoplefor violating pandemic mask guidelines. WhileCalifornia state law gives people with I/DD an exemption from mask wearing,It's usually clear that Leo's not wearing a mask because he can't, as when we're in public I have one on though he doesn't. But I still worry about law enforcement making first-glance assumptions, and that leading to an encounter in which my son's behavior might be misinterpreted.
I am also upset about jerks using fake ADA cards to get out of wearing masks: It's such a callow, ableist dodge, as well as total bullshit, and here's why:The U.S.Department of Justice says,"The ADA does not provide a blanket exemption to people with disabilities from complying with legitimate safety requirements necessary for safe operations." This means that while the ADA does say disabled people need to be reasonably accommodated when working with employers, public businesses and the government, it does NOT allow mask exemptions "without replacing it with another measure in line with public health requirements. No one gets to go maskless if doing so endangers themselves or others.And last in my list of mask grievances: maskless joggers who run right through other people's social distancing bubbles. Doing so is a blatant dick move as well as a health code violation. It shouldn't matter that taking the time to safely distance interrupts an exerciser's rhythm or heart rate or whatever else they're tracking. This is a pandemic, we're all having to make changes for the greater good. Pull up your mask for five seconds, run around the other people if possible, or stop for five seconds until you can pass the other person safely. FFS.We're handling Leo's inability to wear a mask by diligent handwashing and application of hand sanitizer, and by avoiding any spaces in which safe social distancing isn't possible. To be very clear, safe social distancing means:At least six feet between us and anyone elseBeing outdoors, away from enclosed spaces with shared or recirculated airIdeally, a good breezeThose last two are important because we're learning thatgood ventilation may be as crucial as hygienein preventing COVID-19 transmission. And for us, this mean we are taking lots and lots and lots and lots of hikes in remote local areas, in open, breezy spaces with wide paths. (Shout out to Peninsula Open Space, whose maps now highlight trails wider than six feet in bright green.) With the exception of essential medical appointmentsin which all staff take maximum precautionsLeo doesn't go indoors except in his own home.
[image: Leo and his dad, seen from behind, walking down a trail to a cove.]
Im relieved we have safety measures besides masks, because its crucial to keep my son healthy. Research indicates that people like Leo who have intellectual and developmental disabilities (I/DD)are four times more likely to get COVID-19, and twice as likely die from it, which is scary AF.
I am also terrified at the thought of my son and people who share his disabilities being hospitalized under pandemic conditions. Leo struggles with hospital environments, even in ideal times. He needs full time, 1:1 support, and while our state ofCaliforniaallows people with I/DD to have support people stay in the hospital with them, this isn't yet universal. And even if one of us were to stay with him, pandemic safeguards and protocols would make that experience exponentially more stressful and fraught than usual. And even though Federal civil rights prohibit medical rationing and discrimination against people with disabilities, if hard choices need to be made about who gets that ventilator, I worry that my son may be denied care because of negative stereotypes about disabled people's quality of life, as recently happened with the death of Michael Hickson. Not being able to wear a mask is a minor worry, by contrast.
I am bummed that masking has become afraught issuewith bombast on both sides: Those who refuse to wear masks for "personal freedom" or "I don't believe in science" reasons, and then people who emblazon their cars with "Mask It or Casket" slogans, and insist that anyone who doesn't wear a mask is a selfish asshole or doesn't understand how masks protect people from the coronavirus.So, my plea: If you can wear a mask, please please PLEASE do. If you can't, please protect yourself by social distancing and hand-washing. And if you see a dude not wearing a mask and he's not close enough to imperil you, leave him alone. You might be looking at my son.No comments: Labels:pandemic 7.18.2020 On Always Always Always LearningWe are also Always, Always, Always Hiking.
[image: White teen boy with short brown hair wearing a baseball cap, seen from
behind, sitting on a wooden park bench overlooking the San Francisco Bay.]
My partiallyspeaking autistic son recently learned to say "excuse me" after he farts.
This is important for many reasons. We are a gassy crew, and we fart a lot, so this is a good skill for all of us to have.But it's also important from the perspective of having confidence in him, in that he is always learning, and that we need to keep encouraging him to do so.
Like many autistic people, my son requires often requires a lot of practice before acquiring a new skill. Not always, but often. We practiced the post-explosive apology for weeks before it stuckthough, like his siblings and mother, he still requires the occasional reminder about best flatulence practices.
He's 19. He's nearing the age at which high-support disabled people like him are often approaching the transition from structured school environments into the great unsupported unknown of adulthood. I worry that for many parents, this transition is accompanied by a tendency to abandon learning now that our offspring are "grown." Or settling into doing things for our kids, because it's easierthings like toweling off after bathing when they can do it with support, guidance and/or patiencebut it takes less time when we do it for them.
But, we also know from autistic people who are able to self-report that they continue to acquire skills throughout their lives, more so than their non-autistic peers. So I am always encouraging the learning. Sometimes this means me talking about everything he and I see as we go on our many many local socially-distanced hikes, sometimes this means reading books about interesting things, sometimes this means having podcasts playing as we drivewhen he's interested in them, that is; another recently taught skill is his ability to navigate the bluetooth enabled car stereo system, and like many teen boys, our hero has decided musical preferences.
Whether he demonstrates to me that he has learned is less important to me than providing opportunities for him to learn, in ways that he's amenable to. Though when he does demonstrate learningusually through an offhanded comment, or "suddenly" deciding to act on a skill he's been practicing, I am always glad for him, because he's usually glad for himself.
And also, we are all always learning, aren't we? (Right? Or am I being naive yet again?) I am obsessive with the podcasts, though I get irritated when they get banter-y or chatty because I want the information please. I try my best to listen to disability advocates who are destroying accessibility and ableism barriers while building policy that will make live easier for my son and his entire disability community. And I still feel like I know so, so little and never enough, and of course still make big mistakes. But even when learning is painful and humiliating, in my experience it is worth doing.
2 comments: Labels:parenting 5.25.2020 Pandemic Greetings from Our BackyardWe are fortunate in that we can all learn and work from home during the pandemic lockdown, now on week10? Maybe? Time has lost any meaning without our usual school, work, and commute structures, which is both good and bad. My only complaint is the difficulty of carving out any alone time, which as an introvert is helpful for my mental health and energy levels/ability to not yell at people who aren't doing anything wrong. But that is a very minor issue right now. Very minor.
Still, yesterday was a beautiful spring day, so while the kids were engaged in the house but within earshot, I snuck out to the yard for some blissful hammock time.
[image: My stubby feet and legs in a rainbow hammock.
Flowering jacaranda trees and oaks are in the background.]Thing is, whatever I do, a certain someone also likes to do (this makes it hard for him when we go on our neighborhood hikes, because I wear a face make, but he can't bear having his nose and mouth covered). I did get in about five minutes of bliss before being politely asked to surrender my spot.
[image: Leo chilling in the same hammock as previous photo.]There's just so much wrong in the world right now, most of which I am processing on Thinking Person's Guide to Autism social media. Because of all the suckage, I'm hoping these two peaceful scenes will be as soothing to you as they were for us. And I hope you are doing OK, in your context.No comments: 11.13.2019 Vanilla Cake For a Nineteen-Year-Old DudeFOAM PIT!
[image: Distance view of Leo about to jump into a foam pit,
seen through black safety netting.]Someone turned nineteen very recently. Someone's mother remains in denial.
We celebrated that someone's birthday according to their specific wishes for pancakes, a typically forbidden strawberry milkshake, and a trampoline-based birthday party with friends. It was a Very Good Day, going by the Very Big Smile metric.
The resident someone was also clear that they wanted a vanilla cake for when cake-and-candle time rolled around. I'm perfectly happy with cake mix confections, but didn't have time to go to the store and get the boxed stuff. I experienced a rare Joy of Cooking fail in looking for alternativesbut the Internet provided, as it often does, and served up a recipe that was relatively quick and easy, and also worked with ingredients we had on hand (with a little quick thinking). Plus everyone really liked the cake in an "I don't usually like buttercream frosting" kind of way, so I'm sharing it with you.
PERFECT-FOR-LEO VANILLA SHEET CAKE
Modifed frommarshasbakingaddiction.com/perfect-vanilla-sheet-cake
CAKE STUFF
3 cups cake flour1 tsp baking powder1 tsp baking soda1/2 tsp salt4 large room temperature eggs1 1/2 cups sugar2 tsp vanilla extract3/4 cup vegetable oil1 cup impromptu buttermilk (mix 1/2 cup sour cream with 1/2 cup water)
FROSTING STUFF
4 cups powdered sugar1 cup Kerrygold butter, softened2 - 3 tbsp whole cream1 tsp vanilla extract
MAKE THE CAKE
Preheat oven to 350FGrease a 13x9-inch pan, and set aside. (I used the Costco version of spray oil)In a medium bowl, whisk together flour, baking powder, baking soda, and salt. Set aside.In a stand mixer, beat the eggs on low speed just until blended. Add the sugar, and blend until combined. Add the vanilla extract and vegetable oil, and blend until combined. Gradually mix in the dry ingredients, alternating with the faux-buttermilk.Pour the batter into the prepared pan, and spread out evenly. Bake for 30 - 35 minutes, or until a toothpick poked deep into the middle comes out clean.Allow to cool completely in the pan on a wire rack before frosting, or else your frosting will just melt and will also be full of crumbs.MAKE THE FROSTING
Beat together the butter and icing sugar until light and fluffy (I used a stand mixer).Beat in the whole cream and vanilla extract until smooth and spreadable.Spread the frosting over the top of the cooled cake, decorate if you wish, then slice and serve.No comments: Labels:baking,birthday,cake 6.26.2019 Thanks For Making Me Cry, Ride a WaveLet me wipe off my still-foggy glasses and explain why that title may not mean what you think it means.
This past weekend, Leo participated inRide A Wavethat glorious all-volunteer supported and inclusive surfing, boogie boarding, and kayaking extravaganza for people with disabilities. For our dude, this yearly "going surfing" is an annual immersion in bliss.
While Leo looks forward to his yearly Ride A Wave day for months, this time he was so excited that he woke up several hours before the morning fun started (props to my tag-team partner Seymour for being up for those several hours; Leo's boundless energy and stamina are ideally matched to companions who have had a full night's sleep).
Leo sang happily as the two of us drove to the beach (Allan Sherman's "When I Was A Lad," "Early One Morning," and "Baby Beluga" are currently on heavy rotation.) Once we arrived at the Santa Cruz Wharf, we were paired with the two volunteer "Buddies" who became Leo's support team on the beachhelping him get into his swim suit, signing him up for events, whooping it up every time he caught a wave. The Buddies tend to be good eggs, but these two were especially great: intuitively following and respecting my cues about interacting with Leo and keeping him safeand reciprocating the happiness Leo exuded all morning long.
As I told one of his Buddies, getting to spend the morning watching Leo in a state of perpetual delight because of people who not onlyvolunteer to help him have the best day ever at the beach by his definition, but who are as happy for him as I am, is the emotional equivalent of a spa day for me.
But that wasn't why I cried.
Again, let me explain. We've always had a great time at Ride A Wave day; Leo because I'm fairly certain he's a selkie, and me because if my kids are happy then I'm happy. But this year was a special one.
You will need to take my word for what happened as I didn't snap that many pictures and didn't get video (for once, trying not to let my camera get between me and being in the presence of awesomeness), but what the photo below shows is Leo surrounded by a squadron of young wetsuited surf buddies. And what you really can't see is that Leo is doing what he loves the mostbobbing and pogoing in the water. And what made me cry is what happened next.
[image: Photo of wetsuited Leo and with a circle of wetsuited
tweens, with a boogie board, in waist-deep ocean waves.]
All the surf buddies spontaneously bobbed and pogo'd with him. Not because anyone told them tothere were no adults or coaches out there in the wavesbut because they were in sync with Leo and going with his flow, soeveryone was caught up in his irrepressible joy.
Cue my sobbing (while pretending not to be).
That's all I want for our sweet, wonderful guyfor other people to respect how he moves through the world, and approach him without hesitation or awkwardness or pity. I want him to know, viscerally, what it's like to be plugged into that kind of spontaneous human synchronicity. That way, when he encounters people who are yet again awkward, or unkind, or patronizing, he understands that it does NOT have to be that way, and he does NOT have to put up with it. Because he's experienced the way he should be treated, and he know's that's an achievable reality.
Explaining this to his buddies on shore while trying to pretend I wasn't crying was not entirely successful, so I'm telling you, now.
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Coda: Leo also got to meet Spiderman during this year's Ride A Wave. For a Spiderverse fan (who also likes to sing "Sunflower," now that I think about it), that's a green straw-level bonus on a day that was already as great as it gets.
[image: Leo fist-bumping Spiderman at a beach.]
1 comment: Labels:acceptance,autism,autistic,disability,inclusion,parenting,RIde a Wave 5.12.2019 Dear Other Mothers of Autistic Kids: I See YouA Mother's Day gift from Leo.
[image: Small decorated terra cotta pot with
emerging seedlings. A printed icon attached to
a popsicle stick is stuck in the soil, has illustrations
of four flowers, and reads, "Flowers for Mom".]For Mother's Day here in the United States, I want all you other moms of autistic kids to know that I see you, and that you are not alone.
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I see your joys, and I see your sorrows.
I see you when you are having a tough day yet still manage to interact with your child with respect and kindness.
I see you when you keep your voice calm during crises, because you know your child is extra-sensitive to emotions and they need you to help them keep it together, or get it back together.
I see you when you don't blame your kid for things they can't help, like meltdowns and accidentally breaking things.
I see you when you can't afford to replace the broken things, and you still don't blame your child.
I see you when you defend and protect your child when other people try to blame them for things they can't help.
I see you when you stand up to people who think they can talk smack about your child like they aren't present, and may be absorbing every word.
I see you when you correct, side-eye, or edge away from people who don't know any better than to view your parenting life as something to pity.
I see you when you are cool with your kid's visceral need to sing, hum, flap, stomp, stim, or line things up, even in publicand you make sure your kid knows it.
I see you when you negotiate with siblings who have a tough time with their autistic sibling singing, humming, flapping, stomping, stimming, and lining things up, because they have their own sensory and neurodivergence things going on.
I see you when you teach your child, and gently remind them, about respecting other people's spaces and sensory needs too.
I see you when you teach their child that their "no" matters, however they express it.
I see you when you just don't go some places, because they're too stressful for your child.
I see you when you make a hasty exit from places you really thought your child would like, because they turn out to be too overwhelming for your child.
I see you when you retry going to those places a few years later, because your child is growing and maturing and maybe they'll be OK with those places now.
I see you when you visit places repeatedly because they make your child so happy, and when your child is happy, so are you.
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I see you struggle after your child's autism diagnosis, because everything is so new and overwhelming, and useful, hopeful information is so frustratingly hard to find.
I see you when family members just don't know what to say, and other parent friends drift away.
I see you when you find parents who do get what your kind of parenting is like, and help you find the useful, hopeful information you need. I see you embrace that solidarity.
I see you when you find private spaces to openly talk about your kids and your parenting, and with people who empathize and understandwithout judging you or violating your trust.
I see you when people say awful things to you about your parenting, and you shake it off because people who think insults are the same thing as arguments aren't worth your time.
I see you when you cry because mean and thoughtless people talking smack about you or your kid sucks, and sometimes you can't just shake off mean and thoughtless speech.
I see you when you struggle but take the time to listen to other parents of autistic kids who are struggling, too.
I see you when you listen to people who make you rethink your approaches to parenting and autism, even when it's hard to hear you may have made mistakes.
I see you when you realize that your autistic child experiences the world very differently than you do, because you aren't autistic.
I see you when you seek out autistic perspectives to help you understand how your child experiences the world, so you can advocate for them effectively and empathetically.
I see you when you realize that, hot damn, everything is so much easier for everyone in your family now that you have a better understanding of why your autistic child does what they do and wants what they want.
I see you when you have a hard time not because your child is autistic, but because you share some of their autistic traits, and having those traits makes the demands of parenting extra-hard.
I see you when you tell people that, actually, you're autistic tooand they suddenly start treating you differently.
I see you when you realize there are really OMG really a lot of other autistic and neurodivergent parents of other autistic kids out thereeven if many of them don't realize it yet.
I see you when you reach out to and mentor other parents who are new to parenting autistic kids.
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I see you when you're up in the middle of the night because your kid is up, tooand it's hard, but you don't blame your kid.
I see you when you can't help falling asleep the moment you sit down.
I see you when the school bus driver then knocks on your door with your kid because you really did not mean to fall asleep and you spend at least five minutes apologizing while horrified.
I see you when you triage matters like laundry and ideally balanced meals because there are only so many hours in the day and at least some of those need to involve you sleeping.
I see you when you decide that a life spent triaging is still a full life.
I see you when you go to the mat for your child's education and accommodations and communication and medical needs, even when those are uphill and seemingly fruitless battlesand even when you are sleep-deprived.
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I see you when you never have a day off of parenting, and still find space for laughter and fun.
I see you when you never have a day off of parenting, and wonder how you're going to get through the next few hours.
I see you when you don't have the supports and respite you and your child need and deserve.
I see you when you never give up on advocating for your child.
I see your joy when your child does something "they" said your child might never do.
I see you when you accept that your child may never do some things, and you adapt.
I see you when you make sure your child knows how much you love them, and that you don't expect them to show their love in exactly the same way.
I see you when you learn to see what makes your child happy, and share in their specific and intense joys.
I see you when you stop caring about whatever "normal" means, and start cherishing "happy" or even "content" instead.
I see you when you are your child's safe space, especially when the rest of the world makes being autistic so hard and so stressful.
...and I hope you have other people who see you too, and listen to you, and love you for everything you do for your family.4 comments: Labels:autism,Mothers Day,parenting 4.22.2019 Visiting Zion National Park While Autistic Because I am very smart, it only took me ten years to realize that Zion National Park is a mere three-hour drive from Las Vegas, where we often stay with family. For us, that's day-trippable. I wasn't sure if Zion would be an ideal place for our team, but as last week was Leo's Spring Break, we were looking for new adventures, and our friend and fellow road-tripper Dr. Deb Karhson was game, we decided to see if Zion was our kind of place.
Oh yes, it was.
First of all, we are all about Transportation Days. If we can spend a day riding buses, trains, subways, ferries, boats, trams, and/or cable cars, that is a day in which everybody wins. And Utah's town of Springfield, AKA the gateway to Zion NP, has a clean, efficient, free shuttle bus service. Yes! We won! (Parking in Springfield was not free, but it was not exorbitant either.)
[image: Deb Karhson, me, and Leo riding the free shuttle bus
from the town of Springfield to the Zion park entrance.]Another reason we were heading to Zion is that it is in fact a National Park. And people with disabilities can get life-long free Access Passes to National Parks. And I thought Leo should have an Access Pass. So I brought all his documentationbirth certificate, passport, diagnosis paperwork, most recent IEP, etc., to prove that yes in fact, our dude is who he says he is and yes, he is disabled.
Turns out the ranger believed Leo without any of that, and just needed him to sign his name (and waited without comment or prompting during that process, which for our dude takes as long as it takes). OK then! Now Leo (and anyone who comes with Leo) can get into any national park, and can even get the car that Leo rides in, into those national parks. I think the Access Pass is an excellent program and I am grateful for it.
We then headed to the next part of our excellent day, the Zion NP free shuttle, which takes visitors to nine different parts of the canyon, with on/off privileges at every stop. Except, d'oh:
[image: Leo next to a very long line of people waiting to board the
Zion National Park free shuttle bus.]We were there on the Friday before Easter Sunday, which turned out to be a Really Busy Day. The rangers said they had Summer attendance but Spring staffing and shuttles, so we ended up having to wait for 30 minutes to board the bus.Thankfully, waiting for a bus is a perfectly acceptable way to spend one's time, according to the teenager in our group. Whew!
We then rode up and down the canyon, possibly more than once. We got off the bus at Zion Lodge and poked around a bit, but we'll need to go back again to get our usual hiking onthe crowds made the trails inaccessible to our party, for various sensory reasons. The crowds also made for waits at many of the shuttle stops, which could have been an issue if we had had a crisis and needed to board right away, as the park has no priority boarding policy for people who have a hard time with lines. I look forward to heading back on a less-bustling day.
But, damn, Zion was so beautiful. The temperature was warm but not intolerable, flowers were blooming everywhere, and the skies were as blue as any I've seen. I did not even try to capture that beauty, as it is staggering on a scale incomprehensible to my puny camera phone. Let's just say that there's a reason there are windows in ceilings of the buses. You should see Zion yourself if you can, orwatch a dedicated video.
[image: Leo from behind, looking down the Virgin river, from a bridge.]Also note that there were lots of places to rest and chill, even with the crowds. Benches and lawns and more. This is important for our crew, which requires downtime. Also important: Water fountains and spouts with tasty, clean Zion spring water everywhere. Don't forget to bring your reusable water bottle![image: Leo and me lounging on the lawn in front of the Zion lodge.]And finally, we were glad to have Deb along with us. I think sometimes Leo gets bored of me, as teenage boys tend to do with their mothers, plus Deb is the least boring person on earth and Leo loves her (as do I). Also Deb says she misses her brother, who lives in another state, and who is a lot like Leo. Then there's that Leo's dad doesn't like the two of us traveling by ourselves, but there aren't a lot of people who think traveling with us for a few days is a vacation. So, more gratitude on my part. Thanks, Deb!
[image: Leo and Deb on the grass at Zion Lodge, seen in
profile. Deb is cupping Leo's cheeks and he is smiling
at her.]If you or your family member are autistic and/or disabled, and you've been to Zion, I'd be interested to hear about your experience. For now, I can report that we had a wonderful time, and I am raring to return.1 comment: Labels:Access Pass,autism,Deb Karhson,disability,National Park Service,road trip,travel,Zion national park 3.28.2019 Leo's Adventures in Disneyland, 2019 EditionThe Monsters, Inc ride is a perennial fave.
[image: Leo in front of a "We're Monsters, Inc."
poster featuring four monsters posing jovially.]It's been eight years since Leo's first successful trip to Disneyland, when we discovered that, for him, the Land of Mouse really is The Happiest Place on Earth.We now try to makeannual pilgrimages, because Leo deserves to be happy and when we can make that happen, we do.
Here's how the latest trip went, and how we made it happenbecause unfortunately, visiting Disneyland is also expensive AF. Note: this go 'round it was just me and Leo. Seymour and Iz were in New Zealand (Iz is doing a college semester abroad*) and J and Leo have somecompeting access thingsgoing on just now. J drove down with us, but spent the night at a local friend's and went to the park with them separately. We did meet up with J and crew once to check in.
One of the most pricey parts of Disneyland is the tickets. Leo wants to see both parks, not just one, as he has has a two-park circuit that we follow for optimal joy. That means $$$ for a park-hopper pass. Luckily, we live in California, and our regional center has a program called Community Involvement (CI) that provides discounted Disneyland tickets. If you live in California and you or your child are regional center clients, ask about this! (We were lucky; our social worker told us about the tickets, but just because yours hasn't doesn't meant it's not an option. Ask!) The CI dates available are limited and subject to blackouts, but the savings are significantand allow provide discounts for a limited number of accompanying family members.
More routine/joy: we stayed at the Grand Californian Hotel. This is important, because being a hotel guest means access to a "Magic Hour" for hotel and other select pass holders, before the parks open to the general public, and during which lines are extra not-crowded. However this meant we had to pay for the hotel room. For this, I am beyond grateful to Leo's grandparents and other family members who understand how much going to Disneyland means to Leo, and gave him cash for his birthday and Christmas that we were able to use for the hotel roombecause otherwise and even during "low season," room prices at this place verge on imaginary. (Though the same Magic Hour benefits hold for guests of the Disneyland Hotel and Paradise Pier hotels, which are slightly less astronomically priced, Leo's routine for as long as he's been going has been the Grand Californian.)
[image: Selfie of me and Leo in a hotel hot tub.]Staying at the hotel meant using the hot tub and pool the night before. This is important. Because we always use the hot tub and pool when we go to Disneyland, and Routine is Life. We both like pools and hot tubs.
We have most things Disney figured out. The one unpredictable factor is lining up to enter the park in the morning. We need to be there relatively early because if we have to wait in a long line at Town Hall to get Leo set up forDisability Access Service, then that cuts into his Magic Hour relaxing rides time. However, if we end up being surrounded by kids who are crying or whining (which is an act of the goddesses and no one's fault), that is distressing to Leo and we can't stay in line.
As always, we gave the park entry waiting line a solid try. And after a few minutes, we were surrounded by crying kids. I tried not to panic, and asked the people standing behind us if they would hold our spot, which they kindly did. I then took Leo around the side of the entry kiosks to talk to a gate agent, and told them about our pickle. Much to my relief, they were able to help us out. We might not need this accommodation next time, but it is good to know that the staff will make those kinds of accommodations if requested.
FU Straw Ban
[image: Leo waiting to ride Star Tours, looking hip with
3D glasses, nonchalant attitude, and mouth-held straw.]We were the first people in line at the Disneyland Town Hall, and Leo's Disability Access Service (DAS) passwhich is tied to the entrance ticket you bring everywhere with youwas activted forthwith. So many exhalations.
The current version of the pass (there have been several iterations over the past few years) meets Leo's needs beautifully. If you've not used the DAS before: it makes it possible for people like Leo who have a hard time waiting in lines to have the shortest line experience possible. This doesn't mean jumping lines, though; you get assigned a "return time" for the FastPass or disabled access line entrances that is roughly equivalent to the ride's current standby (regular folks, non-FastPass) waiting) time. This means that if the wait time for Pirates of the Caribbean is 45 minutes, you get to spend those 45 minutes doing something that is not waiting in line, like going to the Tiki Roomand then you can come back to the FastPass entrance any time after your DAS-appointed return time.
(Apparently you can also use the DAS in conjunction with the regular FastPass service, but that is more planning and executive function juggling than my head had space for, and we were perfectly happy using the DAS alone.)
[image: Photo of a MedAlert safety bracelet
clipped onto Leo's pants' belt loop.]A final logistics note: As Leo has, on occasion, followed his enthusiasm more quickly than I could keep up with him, I wanted to ensure he had a visible form of ID with my phone number and his MedicAlert info on it (even though, as I learned, The Mouse has eyes everywhere and escaped kids get returned to parents surprisingly quickly). We usedSafety Tatsfor a while, but they aren't that obvious, especially during cold weather which means long sleeves, and they also don't have enough information for some of Leo's medical considerations. Leo is also not a fan of safety bracelets or other medical ID tags. But I figured out that if I use a metal binder ring to attach a metal safety bracelet to his belt loop, he is not only OK with that but considers the bracelet chain an excellent fidget. Another win-win.[video description: Leo rubbing his hand along the wavy
metal guardrail at the Nemo submarine ride line.]Overall, a lovely time was had. Though it was a holiday week, it was a Tuesday, plus the park wasn't as crowded as the IsItPacked Disneyland Crowd Forecast foretold. Leo got to ride all his rides, several more than once. We found more spots of joy, like the stim-worthy wavy metal railguards along the lines at the Finding Nemo submarine ride. We also found many spots of quiet and regrouping and rest, such as the circumnavigating Disneyland Train that lets you ride indefinitely. These were important, as were the Benches Everywhere (though New Orleans Square could still use more benches).
The only real bummer was the brightness. The weather report said it was going to be overcast, so I didn't bring hats. Which meant that once we found ourselves squinting (a situation that leads to horrible headaches for our young hero), hats needed to be purchased. And there is no getting a non-merch-branded hat in Disneyland; I looked. So I ended up, reluctantly, with a Darth Vader trucker hat while my companion scored a "P. Sherman, 42 Wallaby Way, Sydney" baseball cap that was the least obnoxious option. (I am old and grumpy and getting tired of branding and merch everything everywhere all the time. Except for at the new Guardians of the Galaxy ride. That was cool.)
The Guardians of the Galaxy ride has so many Easter eggs!
[image: Leo next to a painting of The Collector and The Master
laughing while playing a game at a table.]A final happy result: Leo spent the months leading up to our visit watching Disney park ride-throughs from parks all over the world. As we made him a bunch of his own ride videos while were were there, and made them part of his YouTube channel, he can now watch videos of himself riding rides at Disneylang on our YouTube-connected TV as easily as he can watch his favorite Netflix shows and DVDs. Sometimes I really do love living in the future:
[image: Selfie of me and J in front of the Vasquez Rocks.]It gets better coda: Road trips have sometimes been hard with our youngest two. It is a mark of how much they have both matured that when the main freeway pass between the central valley and Los Angeles got shut down due to snow, and we ended up sitting on the freeway for four hours and were eventually turned around and had to to do a three-hour detour and did not reach our destination until 1:30 AM, they were both good sports about it and the situation was totally manageable. It is a mark of how my approach to life has changed that as long as my kids were not having a hard time, I was cool with whatever needed to be done, and am just glad it all worked out, and did not have a panic attack or meltdown. Plus when we woke up, we discovered we were five minutes away from one of the most iconic Star Trek locations in the Southland. It's hard to be mad about geekery opportunities.
----
[image: Photo of Seymour's hand holding up his gold wedding
ring next to the volcano that was the film version of Mt. Doom.]*When I studied abroad in Ghana nearly 30 years ago, making a phone call to my parents was only possible at the airport, and I had to arrange the phone via mail weeks in advancebecause that's how long the mail took. In contrast, Iz can and does text us all day long, time differences allowing (she is three hours behind me, but in tomorrow's time). I much prefer the contemporary situation, now that I'm in the parent position. Also: She and Seymour found the one true ring!
No comments: Labels:accessibility,autism,autistic,Disability access service,Disneyland,parenting 11.09.2018 Eighteen Years. Eighteen Years. (Holy Hell.)[image: Smiling Leo, taken this morning.]Leo turned eighteen years old today. Like nearly all parents of newly-minted-18 year olds, I can't f***ing believe it. But I think I'm ready. I think Leo's ready, too.
Leo's ready because birthdays mean parties! One at school today, with homemade carrot cake (a laughable nod at "eating more healthfully"), and another tomorrow with his friends and family. Plus today we'll take a trip to In-N-Out for an otherwise forbidden milkshake. There will possibly be a man-sized hammock chair arriving later today (shhh). And we will listen to The Candy Band's "It's Your Birthday" and The Ting Ting's "Happy Birthday" all day long. Yes!
I'm ready, on many levels, if not on the plane containing my emotions: I liked having little kids! Little kids are fun! Teenagers are hard! And adult kids don't need you as much!. (I'm less thrilled about all the post-18 paperwork and services changeovers, but that is the path we're on and I'll reward myself with a beer or a bowl of Lucky Charms once it's all completed.)
More significantly, I feel like we've made it to our own version of the Promised Land. Leo is no longer an autistic child, he's an autistic adult. A happy autistic adult. That's something to celebrate. While anyone who's ever spent time in our house knows that we would never pretend everything in Leo's life is easy always because often it is really REALLY not, we know more often than not how to support him in doing what he wants to do, learning, staying healthy, and being content. I feel like we are lucky more often than we are not.
Expanding Leo's contented space to work for our entire family has meant relearning and readjusting some family dynamics: Now that all three of our kids are teens, we are smack-dab in the middle of Competing Access Needs land, a place in which our neurodiverse trio of kids can't always accommodate each other and in fact are sometimes explosively incompatibleoften for reasons none of them can control.
Logistically. this dynamic means that, for the first time in almost a decade, our family will be embarking on separate Thanksgivings: Leo, Iz and I to one destination with my family, and Seymour and J with the Rosenberg grandparents. We are all cool with this. And you should be, too. It's what we need to do, and it's what works.
A decade or so ago I would probably have used this space to bewail what "autism" was doing to my family holidays. Today I am thrilled that we're confident enough in our son and in what works for our family to make the choices that work best for everyone. Not just for Leo. Not just for his siblings. Not just for me and my husband. For all of us.
But first, we party. Happy birthday, my dude. I love you so much.
[image: Barely awake Leo, taken earlier this morning, in front of a black-and
white photo of barely awake toddler Leo with the exact same expression.]
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