6.26.2019

Thanks For Making Me Cry, Ride a Wave

Let 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 in Ride A Wave—that 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 beach—helping 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 safe—and 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 only volunteer 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 most—bobbing 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 to—there were no adults or coaches out there in the waves—but because they were in sync with Leo and going with his flow, so everyone was caught up in his irrepressible joy.

Cue my sobbing (while pretending not to be).

That's all I want for our sweet, wonderful guy—for 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.

----

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.]

5.12.2019

Dear Other Mothers of Autistic Kids: I See You

A 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.

----

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 public—and 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.

----

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 understand—without 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 too—and 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 there—even 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.

----

I see you when you're up in the middle of the night because your kid is up, too—and 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 battles—and even when you are sleep-deprived.

----

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.

4.22.2019

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 documentation—birth 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 on—the 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, or watch 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.

3.28.2019

Leo's Adventures in Disneyland, 2019 Edition

image: Leo in front of a "We're Monsters, Inc." poster with four monsters posing jovially, while waiting in line for the ride
The 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 make annual 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 happen—because 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 some competing access things going 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 significant—and 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 room—because 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.)

Selfie of me and Leo in a hotel hot tub.
[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 for Disability 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) pass—which is tied to the entrance ticket you bring everywhere with you—was 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 Room—and 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 used Safety Tats for 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 advance—because 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!