Wednesday, October 09, 2019

only nineteen...

Dear Taylor, 


Some years feel heavier than others, and this one was the heaviest it’s been in a long time. I’ve been trying to figure out why. 



Part of me attributes that to my being sentimental about dates, and how, at the time we lost you, I projected into the future what your Turning Nineteen Would Have Brought, which, back then, meant formal missionary service. Of course, now that’s changed -- in general, and for me; in general because now boys are going on missions as early as age 18, and for me because who knows? Maybe you wouldn’t have served a mission, for whatever reason.

 
Another part of me looks at current circumstance, and with your sister having just turned 18, I was already emotional about that, as she feels anxiety about the future (ergo, I feel anxiety). Plus, Rae is going to be home from her mission soon, which is great, I’ve missed her so. Daily, it’s difficult for me to be far away from the kids and drive so much all the time, I feel like my very self is split between physical locations, and I’m not sure how to be whole in any of them. 


This past year I took some classes, though, and learned some skills in regards to how to deal with these feelings and their physical effects. I was able to employ them minimally during your birthday week, but still felt crisis. Just in time, a friend stepped in via text and-- I’m calling it a miracle-- she helped me get centered when I needed it most. She reached out to me, walked me through simple steps of mindfulness, made herself available, asked about you, shared some of her own personal and hallowed experiences. Her generosity, concern, vulnerability, and love kept me afloat in so many ways that week. I am forever grateful for friends like Anne-Marie who have loved all my children over the years. 



Because Emma had to work on your birthday, the kids and I visited the cemetery two days before (Tuesday). The kids did the flower arranging on your grave, cleaned up the overgrown grass on your headstone, which warmed my heart to see (it’s what I typically do each time I visit). I called Rae, and we took a picture with her included. On your actual birthday, Quinn, Syd, and I spent some time at your grave, and John left work early to join us there. That night the four of us went to a concert in Salt Lake, and I thought of you while the kids sang along to a song called Birthday Party.




*****


John said the other day, “Wish I could have known him.” That’s how I feel in a lot of ways, which is weird because some days I think I know you, and other days I am at a loss. I still think you resemble Emma in your looks, and that the two of you are close friends. I think of you as naturally happy, and eagerly helpful. ...is that wishful thinking? I’m not sure. 




Whatever the case, I’m hoping that I make you proud, proud to be a part of our family, in its ever-disparate shape and disposition. Part of my own legacy is that of being your mother, for which I am grateful. 


Happy birthday, Son. We miss you. We love you.






Tuesday, April 02, 2019

New to the Autism Community

Michael, row the boat ashore….” Do you know that song? This is the tune that starts my day.

Each morning my husband and I wake up to the sound of a pre-programmed song on a keyboard playing in a bedroom across the hall. Or, if we’re already awake, this is what gets us out of bed.

The song is usually, “Michael, Row The Boat Ashore.”

It’s not a precise alarm clock, but it is surprisingly reliable. Typically we hear it a little before 7:00 a.m.

Getting out of bed, one of us crosses the hall and opens the door to find Andrew standing, arms folded, at his keyboard playing with the volume at full blast. He reaches over and turns down the volume. “Good morning, Andrew!” He doesn’t reply. We hand him his device, an iPhone which has been outside his bedroom while he slept, which he takes and sits back in his bed or on the floor. We gently close his door, and begin getting ready for our day.

Andrew has autism. Considered nonverbal, he does use the notes app on his device to communicate simple requests (“I want Arby’s”). He also uses it to listen to music, as well as record and rewatch clips of his life, whether they be car rides, interactions at home, or clips of movies he likes. He recites what he’s watching on the screen and listening to through his earbuds.

He is 23 years old.

*****

Let me be clear: I am not Andrew’s mom. I am Andrew’s stepmom. I met Andrew when he was 20 years old. I didn’t know him when he got diagnosed at age two. I wasn’t in his life when it became clear he wasn’t taking to toilet training and would likely continue wearing diapers. I wasn’t around for any pre-teen/teen physical aggression or ramifications from his pica or any other of many significant milestones in his life.

Since I’ve known him, however, I’ve gotten to know him rather well. I’ve taken trips with him: 2 road trips from Salt Lake City to Montana, one road trip from Salt Lake City to St. George, Utah, a couple overnights in Park City, 1 flight to and from Long Beach, and another trip-- with layovers-- to and from Hawai’i. I’ve taken him on countless walks, errands, and trips to the park. I’ve cared for him when he’s been ill. He’s gone on many dates alongside his dad and me. And in the two years his dad and I have been married, I’ve done the day-in, day-out caring and work that a parent does for their special needs child.

In short: I’m relatively new to the Autism Parenting Community, and I know I’m still learning.

*****

Before my husband leaves for work he says goodbye to Andrew. At around 8:20 I knock on his door and let him know it’s time to take a bath. Sometimes I need to remind him to set his device and headphones down, which he does. He then walks through our bedroom and into the master bathroom where he takes off his pants and throws his diaper (it’s called a brief, and is more like a pull-up than a diaper) into the trash can before taking off his shirt. He steps into the bathtub, turns the faucet handles, and engages the drain stopper. When the water has covered the tops of his feet he sits down.

While he is filling up the tub I go get his device and take it downstairs to the kitchen. On my way back up I stop in his room and grab a clean brief for him and bring it into the bathroom. I ask, “May I wash you?”

“Wash you,” he answers. He hands me the cup he’s holding, from which he’s likely been drinking bath water.

Sometimes we sing a song while I wash him. Sometimes singing involves my saying, “Alexa, play Wheels on the Bus.” Sometimes I ask him questions and he echoes back to me.

Most times, there’s hardly any talking. I try to catch his eye. I wonder what he’s thinking. More than any other time he and I regularly spend together, the time I bathe him is the time I most consider the relationship he and I have, and I wonder what he’s thinking, what he would say if he could, and my heart is filled for the opportunity I have to do what I’m doing.  

August, 2016

I fill the cup and pour water on his hair and down his back. He’s typically very calm while in the bath. I put this combination shampoo/body wash, a blue gel, on his head and his back, and on his stomach. I also ask him if he will please wash his body. He holds out his hand and I squeeze some of the blue gel into his palm while I vocally direct, “Under your arms, please. And your legs and feet. And your belly.” He hastily touches the body parts I name while I wash his hair and back. Then I rinse the same way I began, with repeated cupfuls of warm water. I say, “Okay,” and he stands.

I hand him a towel and he dries his face, then stretches his arms over his head. He’s much taller than I am, but I do have the experience of a mom who needs to do things quickly, and he’s generally cooperative. It’s a routine, and I say what I’m doing while I’m doing it. “Let’s dry your hair. Now your arms, please.”

“Wuh fooh, uhduh fooT,” he says as he puts his right foot on the side of the tub.

“Yes, one foot then the other foot,” I reply as I dry his foot and leg before he steps out onto the bath mat and I dry his other leg and foot. With both of his feet on the floor I dry his back and reach up as the towel catches some drops from his hair. It’s a race, as he’s already begun putting on his brief. I ask him to pick up his dirty clothes, which he does, and he turns off the light before hurriedly walking to the laundry room to put his clothes in a hamper and then march back to his bedroom.

To be continued...

*****
Every April, Autism Speaks kicks off World Autism Month beginning with UN-sanctioned World Autism Day on April 2. This post is part of a series in partnership with Skywalker Trampolines, a company deeply committed to supporting the Autism Community by advancing awareness about Autism Spectrum Disorder (ASD) as well as education about the benefits of trampoline therapy to their audience. For the month of April, Skywalker is donating trampolines to families of individuals with ASD. To nominate a family or individual to receive a trampoline please click here.  

Sunday, January 06, 2019

Talking and Not Talking about Temples and Not Temples

Typically when there's any news about temples, in general, it's an announcement of the construction of one or more new temples (and, on occasion, an announcement about a remodel or rededication of an existing temple). Temples made the news last week, though, and it wasn't because any new temples were announced....

One of the things I love most about the religion to which I subscribe is the principle of continuing revelation. To me, a portion of this principle is (or can be) interactive, and that makes sense; I believe in prayer, in communion with God.

There are things I've learned (or, knowledge I've acquired) as an adult, and upon learning such things, I've felt frustrated, inadequate, and even embarrassed because I feel strongly I would have benefited from having known those things earlier in my life, and I sometimes can't help but wonder what might have been. Still, I don't always know why things have come into my life when they have, and I typically hope to trust to see reason to it as I go along.

In my lifetime I've witnessed continuing revelation in action, in ways which affect daily aspects of living for many who not only share my religious beliefs, but also their loved ones. One major change in recent years is the change in age eligibility for those who decide to serve as full-time missionaries. When I was younger, young men could go on missions beginning at age 19, typically after a year of college experience, and women had to wait until they were 21 years old. In October, 2012, a changed was announced: men could serve beginning at age 18, and women could serve at age 19. This affected many people (myself included, as my own kid is on a mission now).

When that change happened, I wrote about it, and I'm glad I did. It's nice to remember these things, and how the dynamic for a group at large affects us on a personal level.

Another thing I love about worship is attending the temple, which is not the same as the local meetinghouse I attend each Sunday. It's kind of well known that not much of what happens within the temple is discussed outside the temple, but exactly how much can be unclear. Years ago, hardly anything about the temple was discussed publicly; now, however, you can see short videos to learn about going inside temples, temple weddings, endowment ceremonies, baptisms by proxy, and even temple garments. All these videos are official church publications, and I love the increase of transparency and inclusion in sharing information this way.

Last Wednesday a statement was issued by the First Presidency regarding temples. A statement isn't necessarily an announcement, but if there's no announcement, the timing of a statement could be curious. I had also seen online chatter about changes in the temple, and then bold and emotional tweets Wednesday morning from people strongly encouraging others to get to the temple as soon as possible.

Taking into account not only the promises we make to not discuss certain things in the temple, but also the cultural pressures (of the past?) to not discuss ANYTHING that happens in the temple, and adding a couple detailed news articles into the mix, it might be difficult to know what, if anything, to say. Personally, I feel strongly about making a record (as I did with my 2012 post about the missionary age change announcement), as well as owning our own narratives rather than passively sit by while the tale of what's happening might be carried by someone who would misrepresent the truth.

So, here's what I've said, and what I'll say:

I am, indeed, glad for continuing revelation, on a personal level and on a wider scale. Some things may not make sense, and may take actual years to feel completely correct, to feel completely right. Some things we pray for, for years and years, never knowing how long change takes, or when it will happen, or if it will happen at all. I do think most of us are doing our very best with what we've got. I look forward now more than ever to being in the temple. Words matter. Sometimes a true thing can become more true. It's one of the things I love most.

Monday, October 01, 2018

eighteen years

(an older picture of #TheWholeWad, but it will be a while before I can take another like it)

Some things I know, and some things I don't know.

I know I love my family.
I know family is important.
I know there are many shapes families take.
I know I love all my children with a fierceness I can't describe.

I don't know why my son passed away before he was born.
I don't know the complete degrees to which losing him affected me.
I know losing him wrecked me.
I know losing him made me stronger.

I don't know why people go through things that seem unbearable.
I don't know why sometimes people say we shouldn't grieve loss.
I know I'll see my son again.
I know things can be happy and sad at the same time.

I don't know what I'm doing with my life.
I don't know what value I bring or worth I have.
I know my kids have inherent value and infinite worth.
I know I should give myself the same pep talk I would give my kids.

I know I don't feel like I fit in, not where I live nor where I used to live.
I know I need friends.
I know I feel lost.
I know I'm trying my best.

I know I still guard my answer to, "How many kids do you have?"
I know some people think having one who passed away doesn't count.
I know they're wrong.
I know the instant, tragic camaraderie among those of us who have lost children.

I know during this week every year I need to be extra kind to myself.
I know I need protection.
I know I need comfort and support and love.
I know I need connection.

I know sometimes trying is the best there is.
I know I want my kids to know joy.
I know I want to be happy.
I know I want to be whole.

I know I love my husband more than I can describe.
I know he's exactly what I want and exactly what I need.
I don't know why we didn't come together until later.
I know there isn't a name for the shape our family takes.

I know Taylor is part of our family.
I know this connection looks different.
I know many things take a very long time to figure out.
I know there is room enough and love enough for all.

I know acceptance comes in the answer sometimes being,
"I don't know."



Taylor Week:
2017
2016
2015 (and this one)
2014
2013
2012
2011
2010
2009
2008
2007
2006
2005

Wednesday, April 25, 2018

How to See #HamiltonSLC

As your resident #Hamilton expert (you heard me, @SpencerJCox #FightMe), I have some helpful tips as you think about or plan to see the touring production of Hamilton: An American Musical at the Eccles Theater in Salt Lake City.

There are ten things you need to know.

1. Buy Tickets Responsibly

The most reliable way to get tickets is through ArtTix or ArtSaltLake. If you buy tickets second-hand, be smart: do you know the seller? Or is the connection to the seller reliable (friend-in-law)? So what if you trade an envelope of cash for an envelope of tickets in a McDonald’s parking lot? (I did that, and it worked out, so…) There’s no shame in doing it if you are smart about it. And while you’re being smart, also be safe.

Want to take a shot (shot! shot!) at winning tickets? Get ye the Hamilton App and go to the Lottery tab; choose your city of choice, and win a chance to buy up to two tickets for $10 each. Be sure to turn on your notifications for the app because if you win you've got a window of just hours to claim your tickets.

2. It is NOT more expensive than seeing it in NYC

“Those tickets are so expensive! It would be cheaper to fly to New York City and see it on Broadway!”

False.

Last December I physically walked to the ticket booth at the Richard Rodgers Theatre (not from Salt Lake, from the hotel where we stayed in the city) and asked for the price of the least expensive ticket (I was on the hunt to take myself and six other people to see this show), and the answer was $425*. $425 also happens to be the price of the most expensive ticket if you buy directly from the Eccles via ArtTix. Now - unless you can get to NYC for free and stay there for free and eat and do all the other things one does on a trip sans cost, or if you have some special connections resulting in discounts, seeing Hamilton in NYC is NOT less expensive than seeing it here at home.

*I've also seen online tickets as low as $285; but taking into account all else required to get to NY (cost of time included)? You can see it for less locally.

When my then-boyfriend and I snuck into the #Hamilton Mixtape Concert,
1 December, 2016 (Thursday), NYC

3. Yes, the tickets are expensive.

With all due respect: get over it. If you don’t want to pay that much for tickets, don’t. And when someone does, maybe don’t make comments about it. I mean, you could, but...well, it can just be poor form to comment on how much money one spends on a thing, in my opinion.

And, yes, people selling their tickets second-hand are jacking up prices to make a profit. I wish they wouldn’t. You know who else wishes they wouldn’t? Lin-Manuel Miranda. So there’s that.

4. What to wear

You’re going to the theater. It’s a very nice theater. It’s a special event. To use the local vernacular: dress in Church Clothes, to be safe...but I’d say a range from business casual to formal would suit the occasion. I like dressing up. Be respectful of who you are and what you’re doing. Srsly, look nice and feel comfortable.

When my then-boyfriend and I went to see #Hamilton,
1 December, 2016 (Thursday), NYC
(he had purchased the tickets 25 January, 2016 [Monday],
three days after our first date) 

5. It’s cold in there

It’s chilly in the house of the Eccles Theatre. I wore a short-sleeved dress, and brought a wrap, thank goodness. I needed it. NOTE: if, when you put on or take off your wrap or coat or whathaveyou, you do so during the performance, please be mindful of those around you and how this action may block the view of those around you (this happened to me last week, and someone's coat blocked me from seeing a specific formation of choreography I was looking forward to seeing).

6. What to bring

You don’t want to bring a lot, because your personal space is limited in a theatre, and you want to be comfortable. But you could bring cash for a snack and a drink. I think you should. Speaking of cash, there is Official Hamilton merchandise for sale in the lobby. It’s the same stuff they sell in NY (though not as wide a selection), for the same prices. That grey hoodie? It’s so soft. Also, consider bringing cash to donate to Broadway Cares/Equity Fights AIDS, a non-profit which helps support those living with HIV and AIDS, including locally.

When my husband and I saw #HamiltonSLC, 21 April, 2018 (Saturday)

7. DO NOT SING ALONG

Listen. I know you know all the words. I’m sure you can do Guns And Ships faster than Daveed himself, wtvr. I know your mom says you sing Burn better than the record (because your mom calls it a record). But everyone around you came to listen to NOT YOU perform. And they paid a lot of money for it. Respect yourself, the other audience members and the performers.

8. Turn off your damn phones.

Lady in front of me WAS TEXTING. WAS. TEXTING. DURING. HAMILTON. Guh. Just post, "Piss off, I'm watching this show now," on facebook, and everyone will know to leave you alone for three hours.

9. Talk with your kids

Bringing kids? Cool. Me too. And I have been talking with them since the minute I surprised them with tickets about theatre-appropriate behavior (which they know, but about which I remind them often, and continue to), ESPECIALLY #7 above. And talk with them about the storyline so there’s not a lot of, “What happened?” during the show.

When we surprised #TheWad (my kids) with tickets, 14 April, 2018 (Saturday)
(We'll see the show together very soon,
which will be an actual wish coming true)

Not sure if you should bring your kids? Let me say this: there is swearing (f-word, y’all) and (implied/discussed) sexual content. As for me and my house? This musical was the main, if not only, thing my 5 kids and I could all talk about together as we all worked to heal from a divorce, and so it has a special place in all our hearts as it brought us together in a critical way, listening to and discussing it for HOURS, swears and all. My youngest is 10 now; I’m bringing her, and she’s into it. Any younger than that? And not into it? I wouldn’t. (I mean...I'd want to enjoy, too, not be worried about keeping an eye out for behavior.) Also keep in mind: there are powerful moments of complete silence during the performance, so if you’ve got a kiddo prone to talking, even whispering, it could be a major distraction, especially during those parts.

...Here's how that surprise went...

...in a few days I'll share my favorite video from this surprise, which I can't watch without crying

10. Other details

Get to the theatre early. Give yourself time to park and walk to the venue, or take Trax (Blue or Green lines, Gallivan Plaza or City Center stations). Be there in time to get through security (standard for this show), take some pictures, look at merch, get a snack, use the facilities, and find your seat. And enjoy. Srsly. And let me know what you thought. I can, would, will happily, and have talk(ed) about this show for hours.

Another of #HamiltonSLC, 21 April, 2018 (Saturday)

Thursday, December 21, 2017

#LightTheWorld Day 21 (2017)

I wrote a post for today's #LightTheWorld theme, For I was an hungered and ye gave me meat, and that post is here on This Week in Mormons.

I spelled it hungered, but they spelled it hungred, and I guess either is acceptable.

Feeding The Hungry is what it's all about, and SPOILER: The Hungry is my daughter.

It's a bit unconventional, but it's how I approached this theme.

And, it needs to be said (even though I say so in the post), the post was written with her support and contribution.

What I didn't mention in the post is this: while she was in treatment, she found and read my blog. Like, the whole thing. And she's asked if we, together, can write about her experience. She thinks doing so could help others. I agree, and do so with hope. So that's something which will be forthcoming.

#LightTheWorld

photo: Monica Noonan