Five Blessings and a Bummer During Quarantine

Like most parents, Alex and I are struggling to create some sort of routine for our kids during this time of "sheltering in place" during the 2020 coronavirus pandemic.  I think that all of us are disoriented and stressed.  But do you know who's not disoriented and stressed?  My 17 year old son, Joshua.  He has no idea why we stopped going to school but he seems to be quite cool with it.  School ended a week ago and our household is just barely starting to achieve some semblance of a new structure.

Mostly, Josh gets to hang out in his room listening to music and drawing which he's happy to do.  He takes long baths and goes for at least one walk around the neighborhood every day.  Sometimes, we drag him around to the grocery store or to get pet food.  As long as he has some snacks, he's very chill about running errands.

Today, I was struck again about what a blessing Joshua is.  Here are five things that I have enjoyed about Josh and one thing that I didn't enjoy:

1) Josh has become a good walking buddy.  When he arrives at a street corner, his years of orientation and mobility training kicks in. Josh says quietly to himself, "Look left, look right.  Safe to cross." Then he takes my arm and crosses the street.  It's the sweetest thing ever!

2)  Josh wakes up happy and hungry.  Whereas my other teens have a proclivity to sleep till 11am or noon, Josh wakes up between 7-7:30 am everyday.  I hear him rummaging around in the kitchen and fear of him pouring my sugar canister all over the floor wakes me up in a jiffy.  Once up I decide to make myself a cup of coffee and then I am rewarded with a quiet couple of hours.  Josh has a couple of pieces of toast and some frozen smoothie cubes then he retires to his own room.

3)   Josh is unbelievably happy in the bathtub.  He loves the sensory input of water and our babysitter recently bought him this bath toy which he finds to be a never ending delight.  ("It's like a shower head!!") I am not kidding, Josh can take a three hour bath and make happy noises the whole time.

4)  Josh comprehends that if he wants to use my phone for 5 minutes to watch a YouTube video he has to work for it. 5 minutes with my phone equals at least three chores.  He's actually pretty good at unloading our dishwasher, although if left unsupervised, he can leave all the glasses upside down on the edge of the sink.  Still, I find it helpful to have him contribute in this way and he never complains.  Other chores include taking out the trash and recycling, watering the plants in the front or back yard, brushing his teeth (not a chore but still works in the same way) or putting away clean clothes.

5)  Josh still loves to sniff Mama's hair.  Actually, he sniffs Hope's hair as well.  I think he really has a thing for long black hair.  Maybe blond hair doesn't smell as nice?  Alex has no hair on his head so he doesn't get to participate in this.  One time Hope had a friend over who had the most beautiful long black hair.  The girls were watching a movie when out of the corner of my eye I saw Josh headed over to sniff her hair.  It was like everything went into slow motion, Josh going in for a sniff, me trying to head it off saying, "Nooooooooooooooooo".  Disaster was averted but the friend seemed a little confused.  Anyways, sniffing people's hair is not the most prosocial behavior but it's one of the only ways that Josh initiates connection and affection.  And it makes him happy, which makes me happy.

The Bummer -- Yesterday Josh and I went for a walk to the "Little Free Library" down the street.  For those of you who have not seen these, they are little shelves or cupboards that people put up on their front yards where people can leave a book or take a book.  It tends to be a low key place where people sometimes congregate.  Three people from the same household were there already and as we approached, smiling Josh said in a loud and delighted voice, "F*cker!" Dude, I have no idea where he got that! Seriously, I don't think that I've heard that word in my house ever. (Other not nice words but not that particular one.)  I do know that Josh will pick up a word that he hears and rolls it around in his mind and mouth.  Last month his favorite word, unfortunately, was "abortion".  Oh how he loved to say that word.  Sometimes he'll keep saying it until we say it back to him.  It's the only way to get him to stop.  Well, all I know is that I haven't had a good mortification like that in a while.

A Fable about a Table

**Friends, this post is longer than my average post.  Please give yourself a few extra minutes to read.  To help you, I've put in more than the average number of photos.  Thanks for engaging with my life and my thoughts!  


My husband tells me that his parents bought this table as a part of a big home redecorating project in the 70's.  That would explain how ugly the table was.  The legs to this table always made me think of furniture that might be in King Arthur's court; heavy, ornate and . . . medieval.  But it was also sturdy and free so we've had it in our dining room ever since Alex's dad passed away.  It is the only dining table that my kids had ever known.

Despite all of the effort that we put into rearranging so that they could have desks in their rooms, my girls do their homework almost exclusively on the dining table.  As soon as I come into the house I plop my computer bag and my purse onto a chair at the table.  Groceries are sorted at this table.  Almost all of our meals have been eaten at this table.  Many guests have been hosted.  Conflicts have been resolved.  Serious conversations have been had.  Many prayers have been prayed at this table.  Our dining table is, in many ways, the heart or the hearth of our family home.

Alex has always taken care of this table as a precious artifact from his family history.  When we have to move the table, it must be done with two people so that it can be lifted not dragged.  Expanding the table by adding additional leaves to it must be done with great care and attention lest it be jostled too much and things get out of joint.  I never knew if this was because the table was so important to him or because he's just a really meticulous dude.  It might be both.

For a long time we had these custom made cushiony cover thingies on the table at all times.  I don't know why.  They came with the table so we kept them on.  And because they were ugly, we always had a table cloth on the table.  And because we had kids, the table cloth was always getting disgustingly gross so we washed the tablecloths almost every day.

Two years ago I asked myself why we were putting so much effort into protecting a table that was almost 50 years old and far from my ideal table.  I made a big change to our lifestyle and decided that we would let our table be naked, come what may.

Well, what came was that one day, while his mom was watering plants in the backyard, Josh took a ball point pen and carved a significant number of shower heads, hairdryers and fans into the table top where he sat to have an after school snack.   Here are some pictures of his "designs".

My first thought was that my husband was going to have a cow.  My second thought was that the table top was already pretty old and worn.  I posted some of these pictures on Facebook and a friend suggested that I simply refinish it.  Another friend even suggested a specific place nearby who might do a great job.  But given the busyness of my life and my tremendous hostility to taking on household projects, I knew that this would never happen.  I just internally prepared myself to live the rest of my life with a dining table with some artwork on it.  Maybe it would just be a conversation piece.  Or we just never let any non-family member sit where Josh usually sits.  I contemplated returning to table cloths.

Alex did have a cow, but just a little one.  He had a calf.  He was upset but quickly submitted to the chaotic power of Josh.  We have an autistic child.  Whaddya gonna do?  Fight to have a semblance of order in our lives?  I think not.

I'm not sure how it happened but somehow my husband and a good friend of his were chatting about what happened to the table.  The friend happened to be a designer and inventor who knew how to work with wood.  And he happened to have a power sander.  I kept coming home from work to see them working on the table with great gusto.  I think they were actually having fun.  Alex was really enjoying learning a new skill, something that he always wanted to know how to do but never had the time or bandwidth.

This is a picture of them and the table before the final varnish.  It was an amazing transformation and resurrection.  I couldn't believe it.  It was a gorgeous color of reddish brown; shiny, gleaming, almost radiating a loving warmth to our home.

Here is a pic of the final work.  Beautiful, isn't it?

How I wish the story ended there but, alas, it does not because two nights ago, the girls had left a permanent marker on the other end of the table from where Josh sits.  As I was preparing his pills, in a split second Josh took the black permanent marker and did this.

I turned around to see him holding the marker in his hand.

"Josh, what are you doing?!!!"  I yelled.

"Josh, what are you doing?"  he replied, calmly, eating a tomato.  If he sensed my emotion, he gave no indication.  It occurred to me that even our dog knows when he is in trouble.  Luther knows when to avert his eyes and get out of the way when I find that he's ripped up a stuffed animal or has peed on the carpet.  But my son acted like it was no big deal, like he was the one who knew some peaceful, deep wisdom that I could not yet fathom.  I just stood in the kitchen with my mouth open, silent, fuming and flummoxed.  Our beautiful, refinished table, was ruined once again.  After a few minutes of silence Josh said to me, "Want more toast".  Sigh.

Years ago, a wise mentor once taught us that we have to remember that the many things that we work to build in our lives are like sandcastles.  We work hard to build something and we want them to be beautiful, excellent, impactful, and lasting.  But in the end, like sand castles, the things we build are ultimately washed away.  Organizations, churches, ministries, institutions, programs, careers, wonderful as they may be, they all have their ends, often sooner than we expect.  Even expensive dining tables don't last forever.  None of the things in my house will last forever.  Even my house will not last forever.  From a Christian perspective, the only things that lasts forever are people and God (and maybe animals, I'm not sure about that one yet).

A few weeks ago while we were on vacation at the beach, we ran into a pair of brothers who were hard at work on a super-duper sand castle.  They had roped off a section of the beach and were building a replica of an actual European castle that they had researched.  Both were engineers who grew up at the beach making sand creations in their childhood. They spent quality  time together once a year by spending a whole day making something beautiful out of sand.  This project took them over 13 hours.  They arrived with their many tools and buckets before dawn and we helped them pack everything up using our flashlights on our phones.  As we chatted at the end of the day, I asked them why they did this and wasn't it a bummer that their creation would be washed away by the next morning?  Exhausted but happy, they said that it's all part of the process.  They did not expect it to last forever.  That was not the point.  Their wives let them take a whole Saturday away from their families not to build the sandcastle but to invest in their relationship as brothers.

I've been thinking about this sandcastle ever since that day.  The beautiful, valuable things in our lives are but a reflection of that which is ultimately lasting beauty.  We will enjoy our lives, our relationships and even our things better if we accept that and just give ourselves to the process of life in this temporal world.

A Shared Joy is a Double Joy

Yesterday I took my kids through a drive-through car wash for the first time in their lives.  It was, to Josh, a revelation.  He was immediately deeply engaged by the experience, exuding a sense of awe that one might have when observing the Grand Canyon or the earth from space. The brushes going back and forth, the spray of the water, the squirting of the detergent, the vibrating rumblings of the machine that ensconced us, these things were absolutely enthralling to him.  

This blog is called "shower heads and hairdryers" because those have been two of Josh's absolute favorite things since he was very little.  Many autistic individuals have a special interest in unique things such as elevators, trains, or dial tones.  Showers have always been the zenith of interest for Josh.  He can spend a good part of a day drawing them.   One year for his birthday, we printed out dozens of images of shower heads and hairdryers and put them up all over the house.  It was better than a trip to Disneyland for my son.  

 As the carwash brushes whirled by spraying florets of water, I could hear Josh whisper with a voice of wonder, "shower head." 

"Yes, Josh" I said. "It's like we're in a shower head.  Like a car shower."

"Like a car shower," said Mr. Amazed.  "Like a car shower."  

For the next 10 minutes, Josh yapped happily about his experience, savoring the sounds of talking about what he had just seen.  

"Like a shower.  Like a brower.   Like a shower head.  Like a dower.  Is it like a zower?  Drower?  "

After a while, Josh's annoyed sisters coudn't tune him out.  "Josh, please stop."

But there was no stopping him.  Home boy was on a roll.  "Zower.  Like a shower.  Shower head. Brower.  Would you like a dower?  It's a car shower.  A car brower."  

"Girls, let him talk.  He's happy."  I said, taking in Josh's exuberance.  

Yes, Josh was very happy and he wanted to share it, in his own way.  And this filled me with joy, even though it was a little bit like being swallowed by a Dr. Seuss book.  My son was sharing about something.  He wanted us to share in something that he was experiencing. 

When I serve in our church's nursery, one of the things that tears my heart a little is watching little 9 month babies point to things.  Pointing is a sign of something very important in a child in terms of his or her neuro-social development.  That child is wanting to share about something with another person.  Pointing, eye contact, shared attention on another interesting object, these are things that naturally happen in a typically developing child, even at a very young age.  It is a critical building block of learning and connecting.  A child points to something then an adult says, "Yes, that's a train. It's Thomas the train.  And this is Percy.  Percy is green!" With a facial expression, tone of voice, and eye contact the child takes in the nuances of meaning.  The experience of sharing attention is a magical portal for learning.

Most autistic children have a very low impulse to have shared attention.  They are often content to experience things on their own, thus, their worlds tend to develop in ways that are not very connected to most people.  This was true of Josh.  I don't ever remember him pointing to things.  He rarely wanted to share his interest or joy in something that was interesting to him. Shared interest has been, to Josh, a very, very thin thread in his developmental life but it's there. 

Yet, in this moment, even in his ramblings, I could tell that Josh was trying to express to us that he had experienced something extraordinary: a shower in a car.  I longed to milk this moment of shared attention and shared joy for all that it was worth.  

This morning as I woke Josh up, I said to him, "We were in a car shower yesterday, huh, Josh?"  He smiled a little smile and said, "Car shower".  And I thought that there was a split second of eye contact as he said it.  

A professor once told me that a shared joy is a double joy.  And even though I need to be at work in a few minutes, I have to post about this moment because I want to double, triple, quadruple my joy.  My son had a moment of joy and, in his own way, he wanted to tell me about it!  It brings me such happiness to reflect on it, to relive the moment!  ZOWER!

May you have a moment of wonder today and may you have the grace-joy-synergy-energy to share about it.  

Lipstick

How could I refuse?  The father of the kid who was hosting my girls for a play date offered to make me a fresh cappuccino on his shiny, new machine that appeared to do hundreds of beautiful things with coffee. They were all hanging out in their driveway with another family who was visiting them when I drove up to pick up my girls.  The father introduced me to his friends as "the mom of the family that we were just telling you about, some of our favorite people!" Dinner was already in the crock pot at home.  We had only one errand left and plenty of time to do it.

"Sure!  I'd love it!  Thank you."  I accepted his offer with gusto and gratefulness.

I looked back at my van at the bottom of their driveway.  I could see from the window that Josh was happily listening to music on headphones.  I left the side door open just in case he needed something or got unhappy.  My girls were elated to have a few more minutes to play with their friend.  The visiting family had just moved to my home town in Oregon so we had a lively conversation about favorite restaurants and pubs in the Portland metropolitan area.  It also turned out that this couple had gone to the college with my husband.  A few minutes turned into forty five with the assistance of a second coffee drink, the sharing of humorous anecdotes and happily occupied children.

Finally, I got my girls and my well-caffeinated, socially satiated self back into my van and headed to the library.  As I unloaded my three children, I realized that the contents of my purse were scattered all over the floor of the back half of my van.  As I picked everything up, I saw that one of my lipsticks had been opened and the contents almost completely missing.  Someone had eaten it like it was a soft, shimmery piece of candy.

I looked at my eldest child and saw that he had Estee Lauder #61 Pink Parfait all over his face and hands.

"Josh!  Did you eat my lipstick?"  I demanded, beginning to panic.

"Yes."  Josh responded, without shame or affect.

"Joshua.  We do not eat lipstick!  Mommy says, 'No eating lipstick!'  What is wrong with you?"  I began to rant at my child who had very little capacity to receive my lecture.

Josh must have been searching for gum or candy in my purse while he was waiting for us to finish our little bonus time in the driveway.  My lipstick was almost new so it looked like he had ingested quite a bit of it.  I had the faint memory of hearing something on the radio recently about how make up was actually toxic.  I was so frustrated with the thought that Josh's habit of eating non-food items was back.

And then I blurted words that should not come into a Mom's head much less out of her mouth.  "God, Joshua!  Why are you so weird?!"

The girls immediately jumped to Josh's defense.

"Well, you might look like you are eating it when you are putting it on, Mommy." said one of them.

"Mommy, that is not a very nice thing to say." said the other, perfectly embodying a corrective tone which I am sure that she picked up from me.  "We don't say things like that."

They were completely right but I wasn't ready to repent.  I was feeling too scared that Josh was going to die and too guilty that I had left him in the car for so long while I had indulged in spontaneous coffee and adult conversation.

I sent the girls ahead to go look for books in the library while I called poison control.  Of course, once I got through to poison control, they put me on hold for about a century.  I put on my headset, wiped off my son's face and scooted him into the library while I waited to talk to a real live person on the phone.  The girls had almost finished checking out a huge pile of books and DVDs each when the person came on the phone.  I explained our situation and asked him what I should expect.  The man told me that, although he doesn't recommend eating an entire lipstick in one sitting, Josh was not likely to have immediate dire consequences.

"The worst thing that you can probably expect is some diarrhea."

Just as the man from poison control was saying this, I looked over and saw that Josh had his hands on either side of a desk.  His back was bent forward ever so slightly and he appeared to be bearing down and pushing.

"Oh my God.  Girls!  Time to go!  Come on, Come on!  Josh, do you need to go to the bathroom?  Are you pooping?"

"No." He said, simply, with no understanding of why I was such a basket case.  He then calmly walked out and found his way to the car, sat down, and buckled himself in.

"Want music."  He said, as if to change the subject.

When the girls had landed in their seats, I took a deep breath and apologized to them about my inappropriate outburst and asked if we could just take a moment before we moved on.  They were already buried in their fresh books.  Josh was calm and happy with the radio on.

I held my head in my hands and poured out my fears, frustrations and guilt to God.  I desperately needed to come down off of the happenings of the past hour.  I asked if He would speak to me and give me some perspective on the situation.

Do you know what I felt like God said?

"Look at your purse."

"O-kay"

 I looked at my hot mess of a purse and this is what I saw:

-lots of Kleenex and napkins both old and new
-6 pens
-4 small toys
-many loose, crumbling M & Ms
-my wallet, bursting with random papers and receipts
-more random papers and receipts loosely floating around
-several small pieces of children's art work
-several plastic items of no discernible identity or origin
-12 lipsticks

Yes, I counted twelve lipsticks or lip glosses in my purse.  And I'm not even a person who wears much lipstick!  Why do I have so much lipstick and, for that matter, all the rest of the stuff?  Because I'm just someone who has an absolute inability to clean out my purse.  It's one of those random, weird things about me.  Try as I might to have an ordered life, you can pretty much be sure that my purse and my desk are going to be utterly chaotic at all times.

Driving home, I realized that the interpretation to the parable of my purse is that we are all weird in unique ways, big and small.  We all have parts of us, our personalities, our choices, things that we do which are inexplicable, idiosyncratic, useless and even counterproductive.  Oftentimes, we are blind to our own oddness.  But part of the meaning of family and friendship is that we love and accept one another despite our unique weirdness.

Why is my son so weird?  Today, that is not the right question.  The right question is "Am I going to love and accept him for who he is, weird behavior and all?"  What helps me to answer that question is another question.  "Do I realize that I am fully loved and accepted for who I am in all of my own weirdness?"

Hope's Story vs. Josh's Story

The weather topped 100 degrees but we were still having a blast!  Every year the regional office of our adoption agency hosts a "Family Fun Day" at a ranch which belongs to a family that supports the organization.  Our kids get to enjoy horseback riding, snow cones, face painting, a BBQ lunch, jumpy houses and a ton of other fun kid activities.  Josh enjoys it because we let him consume as many snow cones as he wants.  By the end of the day Josh becomes a happy, sticky mess!

This year, at lunch, Alex had an interesting conversation with the woman who organized the event, who is also in charge of public relations.  She enthusiastically told us that Hope's birth mom had come to share her story at an agency event recently and that it was so touching to hear more about our family.  Our agency has invited us to share through several venues and platforms about Hope's adoption story.  

There has been a great deal of interest about her story because we have a very successful open adoption situation with Hope's birth mom.  Miranda visits us three or four times a year and has a very positive relationship with Hope.  She is a very mature and gracious person whom we trust to be a good presence in Hope's life (and the lives of our other kids as well).  She's also a great voice for Bethany because she's thoughtful, articulate, poised, beautiful and has had a profound spiritual revival in her life through the process of choosing to give birth to Hope and place her for adoption.  We have been so glad that our story has been used (by the organization and by God) to encourage others about adoption in general and about open adoption specifically.  Below are some links to some of the content that has been produced about Hope and Miranda.  

http://blogs.christianpost.com/every-child/a-life-with-hope-12521/

http://www.christianitytoday.com/ct/2012/october/opening-adoption-files.html

http://vimeo.com/36151146 

However, Alex found himself sharing with the staff person from our agency that it was a little sad for him that, while Hope's story has been told very publicly, there has not been much interest in Josh's story.  Now, it's rather obvious why an adoption agency might not want to highlight Josh's story.  His is a story that says to prospective adoptive parents, "you might adopt a child hoping that he would be healthy but then they turn out to be a severely disabled, medically complicated person".  This is not a adoption agency's publicist's dream.  After we adopted Josh, Alex and I used to joke that we'll probably never get invited to come speak at those prospective adoptive parent trainings because our family story would probably scare everyone away!

Not every child gets to have their story put into videos and articles.  Still, the imbalance between the interest in Hope's adoption story and Josh's adoption story is painful for us especially because it's the healthy, typically developing child who gets a lot of attention and the special needs child who gets ignored.  For us, as parents, both adoption narratives feel like stories that should be told and celebrated.  I suppose that it's the conviction that Josh's story needs to be told that causes me to write this blog.  He may be mostly non-verbal and hard to get to know but I believe, with all my heart, that his story is important.    

Surprisingly, the woman listened with an open heart.  She emailed us a few days later to ask if it would be ok for her to talk to the agency's national communications department about doing a story about Josh for their quarterly adoption magazine.  Apparently, it fits right in with a special focus that the organization is launching about adopting kids with special needs called, "Courage to Love".  We told her that we'd be glad to participate!  I feel so touched that the agency is one who is feeling moved to address this topic.

I just got off the phone with a writer who has been contracted to write the story and am looking forward to seeing what kind of fruit this produces.  I'll blog about this more later, hopefully with links to the story about Josh.  

Stories

Someone recently asked me about a sentence at the end of my intro paragraph on the front page of my blog.  I have written that "I believe that stories save us."  What do I mean by that?  In general, I mean that I have experienced that as the stomach craves food, and as our skin craves touch, our brains crave stories.  That's why reading is such a pleasure and that wise preachers illustrate their points with stories.  This is why we watch TV, go to movies and listen to news on the radio, there is something deep and powerful in us that seeks stories.   Stories give us encouragement, meaning, perspective, connection, relaxation, challenge and pause.  My girls are always begging me to tell them stories about things that I did when I was a kid (like the time I stole a bag of crackers from a store when I was four . . . but that's another story).

But I have another illustration about how stories save us.  This week has been a very difficult one for me and my kids.  Everyone is still adjusting to the new school year.  Afternoons in our home have been filled with tantrums, whining and general unhappiness.  We've had several occasions where a child (who shall not be named) has gone up to her brother and screamed in his face, causing him to scream and begin hitting his head (very unpleasant).  I have been battling a headache that could not be vanquished by neither copious amounts of ibuprophen nor desperate prayer.  I needed help.

In the midst of this grumpy week, I experienced a small but welcome miracle. We had recently checked out a "book on cd" from the library of Farmer Boy by Laura Ingalls Wilder.  It's one of the beloved "Little House on the Prairie" books from my childhood and I was eager to share it with my girls.  I put it on and they were instantly calmed and mesmerized as the narrator told stories about farming, and family meals and animals and one room school houses.  My girls were able to let go of their complaints of each other as they laughed together about the antics of Almanzo, the main character, and his siblings.  I put some watercolor paints in front of them and they quietly painted pictures on recycled paper as they listened to the stories for almost two straight hours!  It was so tranquil and quiet under the stable leadership of the cd narrator that Josh even ventured out of the refuge of his room to ask for a snack.  

As parents (and as friends, as teachers, as ministers, and so many other things), it would do us well to remember the gift of story.  We ought to find ways to connect by sharing our stories.  We should work on the art of telling a good story.  We need to recognize how we are helped by the right kind of story and seek out quality stories to help us where are in our lives.  How might you be blessed by the power of a good story today?