Monthly Archives: April 2015

Garden Gnomes

This morning Truman woke the whole house up at 5:00 AM, screaming for a bobby (ie, a bottle of warm milk.) Is he a newborn? No, he is three and a half. And we are tired of doing this every night. So we gave him a cracker and a drink of water, and he responded by wailing for the next two hours.

Which meant Charlie woke up way too early, too, and thus had a major meltdown this evening wherein he turned feral and irrational.

And then Jack took from my bathroom the package of new makeup I just got and destroyed it in the backyard. This is when I had a major meltdown and turned feral and irrational. Over makeup. But mostly over the pattern of destruction of everything in my house for the last eleven years.

And the lack of sleep. And the ongoing tradition of hating weekends because of Jack’s spazzy behavior. Regardless, my reaction was still lame.

Feeling shell-shocked from the house of screaming, I walked outside to take out the trash and felt really conflicted thinking about all the home and family talks from conference in the last couple of weeks. Love at home, joy in my posterity, peaceful families—these things feel like a mirage to me. Survival at home, barely hanging on at home, struggling at home with the chaos of family members with mental, behavioral, and emotional disabilities—this is us.

What happens when home and family are kicking your can? What does it mean when your whole life is at home, all your energy is invested in raising the extremely difficult children, and yet it still is woefully inadequate and you want to shout and swear and knock people’s heads together? How can a house of people with autism screaming at you be a bastion of peace and joy?

I understand on a very basic, cellular level that my children are making subtle progress because they have a stable, nurturing family environment that is essentially a greenhouse for their tender, flourishing little plant selves.

But what happens when the gardner loses her marbles?

Parenting is Weird

Yes, it’s magical. But having children is also the weirdest. 

Today Charlie asked me if President Obamer (sic) is dead and can he (Obamer) be on the one dollar bill. He also wants to know what all the buildings and symbols are on the one, five, ten, twenty, and hundred dollar bills. 

“Why does the Lincoln Memorial have a statue?”

“What color was Alexander Hamilton’s hair?”

“Who was Ullysses S. Grant?”

“What is this pyramid thing with an eye at the top?”

“Why does George Washington have big hair?”

“Why is there a bird on the dollars?”

This is what we Charlie and I talk about  during roughly 40% of our day.

But you know, it’s okay. I’m happy Charlie can talk and ask weird questions and be excited about something. I like that he is suddenly jazzed about doing homework and jobs so he can earn a buck. 

Jennifer Walker, a bosom friend from back in the Cache Valley days of graduate school, sent this photo defining how raising kids is strange.


 She wrote, “Every few days, my daughter comes upstairs with some new trauma to the body. A few weeks ago she came up with this ailment and I actually thought she had been bitten by a zombie. You see, she’s obsessed with stage makeup. I’ve seen burns, animal attacks, open flesh wounds, and black eyes. Sometimes I get to look at them across the dinner table while I eat. I’ve finally caught on and have gotten more used to seeing her maimed body. And I’ve finally stopped asking if she’s OK. She is OK. She’s just doing what she loves!”

Fledgling teens with growing opinions and varied interests are part of the parenting fiesta, it is true. Rock on, thespian daughter. 

But children change us even when they are small. Sarah, who I like to call seester, texted this photo to me. 


That’s my niece and nephew playing on piles of clean clothes. Yay for fun families and rumpled clothes! And yay for that itty bitty gingham dress my sister thrifted somewhere!

Sarah said, “My ‘beautiful even if it’s not perfect’ picture is my embarrassingly large pile of clean laundry. My kids love to roll around in it. Even though I’m ashamed I’m not a better housekeeper, the smiles on my babies make me love this imperfection.”

Who is going to remember neatly folded clothes stacked in drawers when there is rolling to be done in the soft, clean piles of freshly-washed laundry? Duh. And is it really sloppy housekeeping if the laundry has been washed?

I think it’s a win.


Here are the things that are making this Spring Break week tolerable and even kind of fabulous for me:

Jack’s Day Camp. The big, new, beautiful facility where Jack plays games and does crafts, interacts with staff and peers, and hangs out in the sensory room is to us what the manna in the wilderness was to the children of Israel during their 40 years of wandering. 

Coca-Cola. I stopped drinking it for two weeks in an effort to imbibe less sugar, but then I realized I was making it up in the form of chocolate and some other chocolate. And I was grumpy. So Coke and I are back together, and I can cope with Spring Break.

Your weird/beautiful pics. I still want more, but the ones that have come in are so glorious, so individual in their odd beauty that they are strangely perfect. Thank you for the peek into your real life and for letting me read some of your words for a change.


Amy, the person in my writing group whose writing makes everyone cry from it’s sheer beauty, sent this photo.

She wrote, “It can feel pretty strange to take young children to visit their grandparents at a cemetery. But this picture is beautiful to me. It still takes my breath away at times to realize that these three are mine, that I am their world, and that each day we have together is golden. And to see them standing (and jumping, and dancing) in this still, lonely space that has witnessed so much of my heartache brings a touch of redemption. There’s such a fine line between grief and sweet joy. And sometimes there’s no line at all.”

See what I mean? This is classic Amy. She has taught me so much about grasping memories and living with awareness of the precious fleeting things. Amy distills grief, love, and insight perfectly in her writing.


This pic arrived from Sarah P., also of my writing group. Sarah is one of my heroes and I am convinced we were bosom friends before we ventured into this insane mortal experience. She feels like someone I’ve always known. Her heart, like Amy’s, has been battered and bruised by too much loss. 

Sarah writes of losing her baby daughter, Lucy, and more recently of losing her mother. 

She said, “I have been storing much of my mom’s belongings at my house for the past year. While it’s been hard to have it all here, in boxes, collecting dust, it’s also been a privilege and delight to open up something and be transported back to the way life was when she was here and healthy. She saved EVERYTHING. How I wish I could know how old she was when someone gave her that gold ring, or where the hell that glass clown came from! Here is a picture of something wonderful, strange, and totally her. It’s a small plastic box with her Chapstick and samples of Avon lipstick. There’s also an eyeliner refill and a single jack. I love to look at this picture. I smile every time.”

I’m not as adept at describing grief as Amy and Sarah are. But I think it feels a little like a sweet ache, a void with tender, ragged borders made of love.

Weirdly Beautiful: Home Edition

More weird/lovely pics have popped up in my in box and I LOVE THEM.


Archie sent this photo of his family in their NYC apartment. He wrote, “Since we have a one bedroom apartment in a Harlem brownstone, our home has 2 rooms: the bedroom and the big room. The big room has our kitchen, our table, our elliptical, our Legos, our furniture, our books, our TV, and our games. We spend a lot of time together having fun and making memories in this small apartment, and I wouldn’t have it any other way.”

Did I mention that this happy nook where Archie and his people live is in NEW YORK CITY? The cool factor and the force is strong with this one. I can say that about Archie with authority since I’ve known him forever.


Julie M. sent a picture of the carpeted stairs in her house, which caused a wave of envy to crash over me because this carpet is clean, while the view from the top of my stairs looks like people have been changing the oil of old, rusted-out cars in the basement.

She explains, “The weirdness of my life includes children who only eat when they can graze and who don’t have the executive functioning required to follow rules about food staying in the kitchen.  So my carpet is disgustingly dirty most of the time.  And in true opposition-in-all-things form, the depth of my sorrow over cruddy carpets is only equal to the sublime joy I feel when they’re freshly clean.”

Oh Julie, honey. I hear you.

And then I talked to my dear friend Shilo, who lives too many states away from me. We decided that everyone has a hard, weird life in some visible or invisible way. But there is also a lot of good threading through it.

   It is vastly reassuring to me knowing that while I’m living head-down like a horse pulling a heavy load uphill, people everywhere are also doing this. And that while we pant and pull and strain, we have the foresight to look around and notice the gifts, the shards of beauty at our feet.

Climb Every Pyramid

Remember how I invited people to send me pics that show the weird & beautiful parts of your life? Well I did, and I want them. Stick it on Instagram (@to_our_survival #tooursurvival) or email me ( Surely you have something strange and wonderful to show me from your Easter weekend, right? Of course you do. 

Heather T., who is famous around here for having a life eerily similar to mine, sent a photo of her two sons playing at the park. Matthew is in Jack’s class at school. They’ve been in the same class for years and, incidentally, they completely have it out for each other. This is known as IRONY as Heather T. and I basically adore each other. Also, Jack and Matthew have similar behavior issues, they take the same meds, they are both the second of four children, and they both have bright red hair. 

If Jack were verbal, I would sit him down for a long talk wherein we discussed Why Can’t You Guys Just Get Along??? I would also like for Jack to explain to me under what conditions he would reliably deuce in the potty, and what he needs for better, safer car behavior. 

And I want to know what he thinks about all the time. No big deal, just a run down of his hopes, dreams, fears, and deepest wishes. That’s it.

Even though Jack has kind of identified him as his arch enemy, I love Matthew. I see him as a tender boy wrapped in tough behaviors that suppress the real him. I see a kid who can’t communicate his frustrations, which are pent up and sometimes boil over. I see someone sweet, vital, and trapped. I see someone like Jack.

Here is the photograph Heather T. sent me, with the caption in her own words.


“This is my beautiful, even when it’s weird photo. On Monday our behavior helper, Preston came with us to the park. Ben was climbing up the pyramid and Matthew climbed up to him and kept hugging him. It probably looked strange to see an almost 12 year old hugging a fourteen year old, but it makes me happy.”

So, Heather T., this is what I have to say in response:

1. I’m weeping.

2. It makes me happy, too.

Life. Beautiful. Weird.

I think I need to clarify my last post. Anyone can submit an image of the beautiful yet weird life. You don’t need to have special needs children. You just need to be alive and human. 

I would list examples, but our lives are all so different that I don’t know what strange, lovely things fill your world.

Aren’t you all as interested in seeing snapshots of each other’s lives as I am?

Send me your pics!

life is beautiful, even when it’s weird

Spring is making me feel like a pale green bud.

Yes, it’s very clichéd. I KNOW. But it’s nice, feeling fresh and alive. 

We seem to have shed our winter’s angst. Jack (knock on wood) seems to have returned to his nonviolent, happy ways. The days are light and the air smells like hope and memories.

On another note, this blog currently feels awfully one-sided to me. It’s just me, blah blah blah all the time. I am nothing if not a reliable yammerer, but even I get tired of listening to myself sometimes.

So I am stealing an idea from a mentor and friend, Louise Plummer, who should win a major award for being hilarious, gifted, and genuine. She invited readers of her blog to send photos of a favorite spot in their home, which she posted. And I found that I LOVE peeking into people’s real lives. Honestly, who doesn’t love this? It is magical, seeing little glimpses of a reality different from mine. It’s sanctioned snooping. It’s way better than celebrity gossip.

Louise’s exercise made the faceless interaction of the Internet more personable for me. And I want to try it. 

If you are so inclined, send me an image from your life that shows how life is beautiful, even when it’s weird. Post it on Instagram, tagging both #tooursurvival and @to_our_survival, or email it to I’ll share as many as I can and we can all rejoice in living our real, messy lives.

Because often the beauty is in the weirdness, I’m fairly sure.

Let’s share what is strange and lovely about life.

I’ll start. Here is a shot of Charlie with angel person, Abby, doing behavior therapy this evening. 


Behavior therapy, social skills class, and life skills practice are a big part of my family’s life, which honestly isn’t something I dreamed about as a girl, you guys. 

But while it is time-consuming and rigorous, therapy is a gift. This is what we do. We have lovely helpers who care. We are growing. Therapy is strange, but it makes us better.

See? Life is beautiful, even when it’s weird.