Friday, April 24, 2020

This 3D Globe Puzzle!


One day, a couple weeks ago, I instituted a Device-Free Day for my son.

I know.

Let that sink in for a minute.

Just kidding (kind of), but really-- the idea of No Devices was a challenge, especially during a quarantine, and especially during Spring Break of the quarantine. I knew I needed to have a plan in place.

Before he woke up, I pulled out a box and opened it up for the first time. It was a puzzle - the Globe 540 Piece 3D Puzzle Ball - John had gotten last fall with the intention that it would be a Fun Family Project during the holidays. Turns out, it was a Fun Teenager Project during a quarantine!

I emptied the pieces out onto the table, and thought it looked pretty, so I took a picture.


When he woke up I showed him the puzzle, and as he worked on it throughout the day, I posted pictures to my story on Instagram and Facebook. And y'all LOVE THIS PUZZLE.











Many of you asked where you can get it, so here's a link for you:



If you get it and put it together, please let me know! I want to see!

Thursday, April 09, 2020

Gratitude during COVID-19

During this global pandemic it's not uncommon to see gratitude expressed - and deservedly so! - for those on the front lines, the health workers, the first responders, the essential workers, the teachers and professors who quickly adapt their methods, and so many more. Today I want to include others to whom we should express thanks. 

Sincere thanks to those who are sheltering in place, staying home, staying safe, even though it can be frustrating, even though you want to go out and be social. Thanks to those treating this as the global health issue it is, to those who see and recognize and honor humanity in the discussions surrounding it rather than turning the discourse toward politics.

Thanks to those who, despite understanding, "They can't MAKE me stay home!" (indeed, They cannot), operate from a place of knowing this isn't about controlling any person, it's about reducing the spread of a new and mysterious and highly-contagious virus which is proving deadly for many. 

Thanks to those who, when at the store for necessities, understand that Distancing isn't just about not wanting to catch it from someone else, it's also about not wanting to give it to someone else, because any of us could have it and be asymptomatic. 

Thanks to those who continue to consider the most vulnerable in our communities, and behave accordingly, whether through their actions day-to-day or the information and opinions they share. 

Thanks to those who decline social invitations and cancel gatherings. This can be so heartbreakingly difficult. You're missing family and friends, birthday parties, weddings, graduations. You want to hold that new grandbaby. You want to see your grandmother blow out those candles this year. You want to celebrate milestones. I see you.

Thanks to those who are patient with their kids, who explain EVERYONE is going through this, even though you yourself may feel like throwing a tantrum: this ISN'T fair. None of it. A lot of it feels like it doesn't make sense. Thank you to those who maintain decorum. 

Thank you to those who use this time to learn alongside their children how to deal with those feelings of impatience and frustration, to those who have long thought, "Why don't they teach basic life skills in school?" and now find themselves in a position to not only learn those things with their children but also practice together. The importance of kindness, meditation, helping others, contributing to household work, sharing, being together, having alone time, taking a time out, taking time to reach out to others, taking time to watch tv or movies or play on a device, appropriately expressing emotion, getting fresh air, taking care of our bodies and minds, relaxing, resting --- thank you for teaching your children by example, even when what you're teaching is how to learn and how to practice. 

Thank you to those who are working from home, those who are going to work, and those who wish they could work. Thank you to those who are staying home while trying to figure out how to do what they need to do AND help their kids and/or other family members do what they need to do. Thank you to those who are staying home while wishing they could share this time with kids. Thank you to those who are staying home who would give anything to share this time with anyone else.  

Thank you to those who create and share memes and jokes about our shared experience without putting down or insulting any group or faction. Thank you to those who inspire and bring laughter in the face of the communal unknown. 

And thank you to those who make themselves available to uplift when and where and how they are able, because we all occasionally find ourselves feeling down and in the dark. Thank you to those who are understanding and compassionate when it's difficult to see the sunshine.  

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