Clean, Dirty

Do you ever feel like the day can just turn on a dime?  One minute you are having a lovely, laughter-fulled time and the next minute things can go so very, very wrong so very, very quickly.

Today, Hope and I went to Pet Food Express to give a bath to Luna, a friend's golden retriever who is staying with us for the summer.  Since Hope was a toddler, we've been going into this place to watch dogs being bathed here at our neighborhood pet food store.  I could drink almost a half of a cup of coffee while I allowed Hope and her sister to stand around and watch as dog owners cleansed their canine family members in neat little stalls with all sorts of hoses and nozzles.  And because there were things that looked like shower heads there, Josh often enjoyed being there as well.  It was a fascinating look into the exotic world of dog ownership.  

Today was the first time for both of us that we got to do it for ourselves.  We gladly paid our money and got a shiny, golden token.  A very friendly staff person gave us an introduction to the marvelous dog shower system and then we invited our slightly smelly dog to go into the wash area.  

Luna was not thrilled but, because she is the world's most obedient golden retriever, she obliged.  You have no idea how good it feels to rub a dog's golden hair with almond scented dog shampoo-- really rubbing it in.  It's like a sensory meditation. We took turns giving her the free treats that they had at the store.  We had aprons on but we got wet anyways.  We were laughing.  It was awesome.  

Luna even sat very still as we dried her now lovely smelling fur.  Hope and I felt good about how well we had accomplished this task.  We sauntered out of the store refreshed and energized.  I paused on the sidewalk while Luna politely smelled a few butts of dogs who were headed into the stores.  Hope was considering purchasing a dog cookie for Luna.  I noticed what a beautiful day it was.  The day was sunny but not too hot.  I could smell the coffee from the Peets coffee shop a few stores down.  What a beautiful scent is coffee, that wonderful elixer.  The scent was smooth, nutty and surprisingly strong.  It was like the smell of an old friend.  I couldn't help but to smile.  

I clicked my key to open the side door to my van, which was parked directly in front of the pet food store in the disabled parking spot.  Josh had been unhappy in the store so I had brought him back to the car, rolled the windows down and left him there to occupy himself with a cup of ice.  As the door opened, I realized why the smell of coffee was so strong.  Coffee grounds had been sprinkled all over the back of my van.  It was in the cup holder, on the floor, on the ceiling and on the seat.  It was all over Josh and the bag had been tossed onto the floor below him.  

In that moment, I realized that Josh must have reached up to the front seat and had found the bag of ground coffee that I had purchased at Peets just before we went to bathe Luna.  It must have looked or felt like sand to him because he had poured it all over himself and my van.  My son loves to pour things.  At parks, Josh loves to watch sand pouring out of his hands.  He could do it for hours.  It appeared as if he had also attempted to dry-shampoo his hair with it. 

I took a deep breath and tried to not cry.  Why is it that you can turn a quick corner and then have chaos whack you across the face with no warning?  I guess because life is just like that, a diverse array of scenes and emotions that remind us that we have very little control. 

Ecclesiastes Chapter 3 says, "For everything there is a season, and a time for every matter under heaven:

2 a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
3 a time to kill, and a time to heal;
a time to break down, and a time to build up;
4 a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
5 a time to throw away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing;
6 a time to seek, and a time to lose;
a time to keep, and a time to throw away;
7 a time to tear, and a time to sew;
a time to keep silence, and a time to speak;
8 a time to love, and a time to hate;
a time for war, and a time for peace.

Apparently, there are times to be clean and times to be dirty.  And the thing about these different times is that we usually don't get to determine them.  They come upon us and what we can do is to be in it and respond well. Sometimes these different types of times happen within the same hour.  Sometimes we wait for a long time for the season to keep silence to end and for the season to speak to start.  Time and the seasons are in God's hands.  We have very little power to determine these things.  

It was a small victory that I did not yell at anyone as I drove my van with a wet girl, a clean dog and a dirty boy home.  For the second time that afternoon, I stuck Josh in the bathtub and tried to explain to him that we do not pour coffee grounds on ourselves.  He simply said back to me echolalically, "We do not pour coffee grounds on ourselves" and went back to happily pouring water from a cup into the bathtub with utter delight.  

Echolalia from God?

Echolalia is the "meaningless repetition of another person's spoken words as a symptom of psychiatric or developmental disorder".  Josh has been exhibiting echolalia since he began to learn how to talk.  We've spend a tremendous amount of time trying to teach Josh to respond to questions with an appropriate simple answer rather than by repeating the question.  For many years, if you asked him, "Do you want toast?"  He would always respond by saying, "Do you want toast?" right back at you.  With help from autism therapists, we learned to not give him what he wanted until he replied with a more appropriate response such as "Yes".  

Even after many, many years of training and intentional assistance, when Josh is tired or when he does not know what you are talking about, he will simply reply to a question with a repetition of a question.  A query such as "How was your day?" will likely solicit the response "How was your day?" because Josh does not know how to answer a question like that.

Sometimes when Josh is alone, I will hear him repeating things just because he wants to or maybe he likes the sound of a particular word or phrase.  Last month, he was in his room listening to the radio with his headphones on.  The quiet of our house was suddenly punctuated with Josh loudly and happily exclaiming "This year, give the gift of beauty!". Another day, I heard him say, "The season of shopping and shipping!" with a follow up of lots of clapping.

Recently, Josh was having his breakfast, while I listened to NPR on the radio and cleaned the kitchen.  As usual, Josh echoed some of the phrases that he heard on the newscast.  I don't know if this is just my imagination but it was strange to notice the specific phrases that he chose to echo.  

During a newscast about the besieged city of Aleppo in Syria, Josh repeated phrases like:

"Many wounded people trapped."

and 

"Children are dying."

and 

"What do they have to hope in?"

It felt like some sort of emotional editor or a a personal prayer highlighter of the news for me.  I was in the mode of semi-listening to the news while putting dishes away while planning the rest of day.  But after the third or fourth seemingly meaningful verbal statement by a kid who cannot understand the news, I began to wonder if it was possible for God to speak to me through echolalia.  

I stopped with the dishes, took a seat and waited for a minute.  Wondering if I should pray for Syria, interact with Josh or turn off the radio, I just sat with the moment of pause.  Josh also entered into the moment of pause.  It was a rich, five-second moment of shared attention; plump with wondering and waiting.  I felt like God had my attention for the first time all day.  Then my son stood up and did a little dance of waving his arms and head back and forth.  Then he went back to his room and shut the door like, "My work here is done."

Does God ever get your attention in surprising, unexpected ways?

What I've Learned from Josh (A Guest Post from "Auntie Rachel")

I've known Josh almost since the day he was born. Susan and Alex lived upstairs from me and my roommate for Josh's first year of life. In light of his heath issues and my night owl tendencies, I had many middle of the night shifts feeding him very specific amounts since his body didn't give him appropriate signals regarding when to eat or the necessary amount. I don't know how much of it is because he was the son of my very good friends who had wanted him so badly and how much of it is because of that year of helping him to live, but I know that I've always loved Josh.

Yet it's tricky to know how to communicate that to Josh or how to have a meaningful relationship with him.

I no longer live in the same area as his family and, at best, I only get to see him twice a year. Generally, I'm good at figuring out how people work and how to build a relationship with them. With people who are important to me, I figure out how to care for them well, how to be a good friend to them, and how to help them know that they are loved.

I have no idea how to do that with Josh.

Some of that has to do with how little time I spend with Josh. Some of that has to do with how little time I spend around people with special needs, particularly autism. Some of that is just Josh and the ways that it can be difficult for anyone to fully figure out how to relate to him, communicate with him, or know what's going on for him.

Perfectionism is a struggle for me and it comes out in my relationships. I work at them. I'm thoughtful with people. I'll go over interactions to figure out what I would have liked to have done or said differently - sometimes intentionally, sometimes compulsively. The more that I care about the person, the more I work. And usually I can see the pay off for that work in strong relationships and people who feel cared for by me.

But with Josh, I don't even know what work would really look like. Despite all of my relational skills, I don't think that I could ever reach the place of feeling like I'm competent and confident at how to relate to him or how to communicate to him how much I love him.

I found myself thinking about Josh recently and aching a bit about how much I love him and how incapable I feel to really communicate that to him. But then God made me take pause. "Oh, Rachel. What's reality here?"

The last couple of times that I've visited Josh and his family, Josh has clearly wanted to spend time with me. The visit before last, it came up just a couple times. Josh likes to spend quite a bit of time by himself in his room. Most of the time others are not welcome. But he very specifically wanted me to hang out with him. "Sit, please." Josh is often polite while being rather insistent. So, I sat on the end of his bed while he drew or listened to his radio for a while. After a stretch of feeling like 'is this really doing something for him?' I got up and immediately received, "Sit, please." So, I sat.

Several months later on my most recent visit last spring, I was washing dishes on the first night and Josh came to get me and took my arm to pull me toward his room with 'Sit, please.' So we hung out. I played some ukulele for him, but I feel like it just gave me something to do. Josh just liked me being present. During the days that I was there he initiated with me so much that it stood out to the rest of the family as atypical Josh behavior. And it was often enough that there was no way to interpret it as random. We couldn't understand it, but it wasn't random. My last dinner with them, Josh was his usually quiet self while I chatted with his otherwise very talkative family. But when I got up to leave the table, there it was again. "Sit, please."

I don't know why Josh likes hanging out with me. Susan, Alex, and I have speculated about what it is about my personality or demeanor that he finds appealing. But in Josh's way, we're friends. And because I love him, that means a lot to me.

But more than that, my relationship with Josh is now a reminder that I don't have to have it all figured out in my friendships for them to become what I want them to be. 

I do think that it's good to work at relationships. They deserve and require that. But I'm never going to need to be reminded of that. I need to be reminded that my relationships aren't as dependent on my work and abilities as I think that they are. Josh is that reminder to me.

Dead Hummingbird

Tough morning. Daddy is out of town. Mom forgot to set the alarm. We woke up just as Josh's bus was about to pull up at our house.  I tried to keep my voice mellow and subdued but I think I ended up sounding serious and intense.  "Girls, Mommy made a mistake and forgot to set the alarm.  I really, really need your help right now!"

The girls picked up on Mom's stressed out tone of voice and scrambled out of bed.  They were very impressive in this mini crisis getting themselves (and even helping Josh) to get ready. Someone got Josh a glass of water.  The other one gave him a very crispy piece of toast. Teeth were not brushed thoroughly and we all had crazy hair but we were only 5 minutes late heading out the door with breakfast in our hands. It was a miracle of morning productivity yet it was clear that we were all adrenalinized and on the brink of snapping at each other any minute if anything were to go wrong.

Do you know what gave me the most energy in the midst of this flurry of activity?  It was the fact that Josh smiled through the whole thing.  My son's super power is that he does not pick up on other people's emotions.  Yes, that's often a downside in social interactions but in moments like these, when negative or stressful emotions are swirling around, it can be so helpful.  Josh woke up happy and was blissfully clueless that others were not.  He was glad to be awake and no one was going to take that away from him.

Unfortunately, we opened the front door and found a dead hummingbird at our doorstep.  I think one of the girls might have even stepped on it's little dead wing as she went out. Weeping ensued. It was like a little handful of cuteness and beauty had been crushed right in front of us.  They demanded that we give it a proper burial right then and there. We three females all felt the spike of sad, negative energy in the moment.  Aya.  What to do?

"Girls, girls, please.  I am begging you.  Can we deal with this later?"  I gently placed the hummingbird's corpse in what I called a "special resting place" under a purple bush in my front  yard.

By some miracle, the girls were both able to choose to be redirected.  Josh was already in the car, munching on an apple and smiling broadly for some unknown reason.  At this point in my life it is such a beautiful thing that at least one of my children is pleasantly resistant to being infected by the negative energy or emotions of others.  He does not get pulled into the panic or anger or sadness of the people around him.  He is just where he is at.  I find that sort of wonderful.  

I want to be someone who can smile and remain happy even when people around me are not.  What is the secret to not getting sucked into other people's stress or negative emotions?  Short of having autism, my guess is that the answer is to become a person who is deeply rooted in peace.  I don't even know what that would look like but I want it.  I want to have a spiritual and emotional force field to the destructive and dark vibes that swirl all around me in my day.  

Sometimes life hands you a dead hummingbird on your front door on a day when you are already running late.  Some days are just like that.  The next time I have one of those days, I am going to picture my happy, apple eating, emotionally unfettered son and try to remember that I do not have to sink into heaviness and despair.  It is possible to be free and happy even on chaotic, dead hummingbird days.  

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.  

Snapshots from the Short Bus

For years I’ve been so preoccupied with getting Josh onto or off of the bus that I have rarely paid attention to the other kids who ride the bus with him.  We live on a busy street with two elementary schools on it so the morning and afternoon bike and car traffic is pretty intense.  I’m aware that there is usually a line of people behind the bus waiting for me to load or unload so I try to move quickly. 

Most of the kids who ride the bus with Josh are not easy to get to know, especially when you don’t have a lot of time.  Many are non-verbal and do not make eye contact.  

For example, one boy never, ever looks up, even if Josh sits near or next to him.  He always has his eyes closed or seems to be looking out the window at nothing in particular.  In over two years of being on the bus with Josh, I have never heard him utter a word, much less try to interact with anyone.  One day, I was surprised when he handed me an envelope on which he had written Josh’s name in shaky letters.  It was an invitation to his birthday party. 

I moved heaven and earth in our family schedule so that Josh could attend this, his first “drop off birthday party” for a peer at school.  When we arrived at “Bill’s” home, Bill greeted us at the door with absolutely no affect on his face.  However, his mother greeted us warmly and told me that her son had really, really wanted Josh to come to his party.  Apparently, he has a great affection for Josh and often tells his mom about how Josh seemed to be doing, like if Josh cried on the bus or if he sang along to songs being played on the radio.

The party was a sweet gathering of 10 young teens mostly from the other special ed. class at Josh’s school that is comprised of slightly higher functioning kids.  Bill’s mom assured me that she and her husband could handle Josh if I left for a few hours.  I did and came back slightly earlier than I said that I would.  I found Josh to be a picture of contentment, happily eating his fourth piece of pizza and humming to himself in the sun.  Apparently, they had played a game where you look for hidden pieces of candy in the garden and he had done quite well.  (My visually impaired child always seems to have excellent vision when there are treats involved.)  The other kids were occupied with riding or analyzing the zip line that they had installed on their property.  I was struck that Bill and his friends were sucking the marrow out of the moment together in their own autism spectrum kind of way.  Bill seemed very energized yet relaxed.  He buzzed back and forth between his other friends and Josh, expressing in his own way that he wanted Josh to be happy. 

As I chatted with Bill's mom and just watched him work the crowd, I realized that Bill is a young man with a rich, beautiful, engaged life, which you would never know from just observing him looking catatonic on the bus (when he is probably tired and uncomfortable).   Apparently, he has all sorts of passions and interests such as VIP baseball (for kids with special needs) and ballroom dancing.  I wonder how many other times I make false or shallow assumptions about kids just because they initially present differently from neuro-typical kids.

The other day, I took a moment to ask a girl who has ridden on the bus with Josh for a long time how she was doing.  She smiled and told me, in her halting way of speaking, that she really, really wants Josh to go to the next school dance and that she noticed that his sister’s haven’t been coming out to get him off of the bus as much as they used to.    She even remembered Hope and Anna’s names!

I laughed out loud with surprise and joy at how sharp this little girl is and how much is going on in her head.  I saw for the first time that she, too, is a complicated, beautifully-minded person.  There is so much beneath the first layer of what one can see or experience with kids like this who ride the special ed. bus.   Far from being “simple” people, kids with intellectual disabilities are just as dimensional and profound people as anyone else.  It’s just that you have to be even more patient and observant to access it.  I’m so grateful that Josh gets to “be in community” with these complex and wonderful kids who are much more than what they seem. 

Why I am Grateful for Josh Today

While on a pre-Thanksgiving walk with me yesterday morning, Josh began to sing a muffled version of "I Don't Need Anything But You" from the Annie soundtrack.  He knows the song because his sisters uploaded it on his ipad and he listens to all of the music on that device constantly.   I decided to join in and we sang a silly little "Josh style" duet.  I would sing most of the line and he would sing the last couple of words.

 It went like this:

Susan:  "Together at..."

Josh:  "last."

Susan:  "Together for..."

Josh:  "ever."

Susan:   "We're tyin' a knot, they never can..."

Josh:  "sever."

Susan:  "I don't need sunshine now to turn my skies to..."

Josh:  "blue."

Susan:   "I don't need anything but..."

Josh:  "you."  

Josh had no affect in his voice as he "sang" but I could tell that he was having a good time. We walked for a while like that in the woods near the little town where we have come for a few days of Thanksgiving vacation.  Josh vacillated between wanting to sing and just stopping to clap for a while, making happy vocalizations.  No one was around so just let him do whatever he wanted.  He seemed extraordinarily content.

Inspired by my son's joy and detached from the many needs of my family, my house and my life, I began to count the things that I am grateful for in my son's life.  Here are a few of them:

1.     I am grateful to be able to go on a walk with Josh.  When we were first told of his diagnosis, our doctor told us that it was questionable whether he'd be able to walk at all in his life.

2.     I am grateful for how far Josh has come in his behavior management.  He rarely bites himself or others anymore.  He has outgrown his tantrums and has only cried a handful of times at school this year.   This is amazing given where we have come from.

3.     I am grateful for the variety of foods which Josh is able to eat.  So many kids with special needs also have dietary limitations or allergies.  Josh loves to eat a huge variety of fresh fruits and vegetables.  He is my my most flexible child when it comes to food.  

4.     We have come so far in Josh's toilet training.  I'd say that we are 97% there and if we could just get him to commit to a higher level of quality control with wiping, we'd be done!  It's taken about 10 years but this is not easy stuff for a kid like Josh and we've had to divide it up into about 40 different steps which each had to be mastered.  I'm also so grateful for the dozens of therapists, aides and specialists who have helped us in his process of learning.

5.     I'm grateful for the parable that Josh is in many so people's lives.  Tim Shriver, the CEO of the Special Olympics and the nephew of President John F. Kennedy said of his intellectually disabled aunt, Rosemary Kennedy, "She walked in the house and she didn't have to do anything. Everybody loved her," Shriver recalls. "And you didn't have to do anything for her. She'd sit with you and talk to you. Play games. Swim. Walk. No earned love."   Like many people with intellectual disabilities,  Josh is my constant reminder of the intrinsic worthiness of any person.  It's the love and touch of God which gives us value, not what we can do or accomplish.  Therefore, we are free to rest, just be together and work hard since our identity is wrapped up in none of these.  

Have you taken a few moments in the past couple of days to reflect upon the things that you are most grateful for?  If not, I strongly suggest that you take time to take a slow walk by yourself or with someone that you love.  It's a great gift in making space to savor the good things of your life and to give God some applause.

Mess and Beauty

Today was a wonderful, delightful, horrible, draining, inspiring, uplifting, confusing, chaotic, burdensome and beautifully rich day.  Ever have one of those?

This afternoon I took Josh with me to our monthly visit to serve dinner to local homeless folks.  My husband and I usually take turns bringing one of the girls along while the other parent stays home with Josh.  The church where this meal is hosted is lovely but the whole experience is rather loud and chaotic.  We've always just assumed that Josh would hate it.  Today both girls happened to have activities this afternoon so I took a risk and went with my son.  Developmentally disabled, visually impaired autistic people need to serve too, right?  

Josh hung in there much longer than I expected.  From the first few minutes he kept saying, "I want car." but he eventually let me put some thick, purple latex gloves on him and helped me serve rolls with a pair of tongs.  The tongs were not easy for Josh to manage but as he gave himself to the task, his dexterity improved, especially since I told him that he could eat some of the bread after we had served the people.  My guess is that he served about 30-40 guests before he plopped himself down on bench behind me and loudly declared, "Want bread."  He spent a good chunk of the rest of the time gnawing on a roll (or five).  

Josh had a subtly softening effect on the clients, even the clearly mentally ill ones.  One gentleman who was wearing a toga made of torn cloth with lavender flowers tucked behind each ear gave Josh a little smile as he went through the line.  It reminded me of how infants or dogs bring out kindness and gentleness in people.  

By the end of the evening, several homeless folks came up to Josh and thanked him for his service.  I was worried that people might be offended by Josh's lack of social response or even eye contact so I said, "Sorry but he doesn't really talk."  The gentlemen were not at all deterred.  One nodded vigorously and knowingly said, "Oh he knows exactly what I'm talkin' about.  He can talk all right.  We just don't understand him."  

Another man who had worn a hard, even fierce look on his face during the whole meal took a moment to encourage me before heading back out onto the street.  "You're doin' a good job with him. He's a fine young man."  This really touched me.  Honestly, the man has no idea whether I'm a good mom to Josh or a complete whack case of a parent but he wanted to extend some kind word to bless me.  I'll take that.  

Josh sang and laughed in the car all the way home.  Who knew that he knows the words to Madonna's "Star light, Star bright.  First star I see tonight..."  He waved his hands in the air back and forth, back and forth in his little spot in the very back of my van.  The 10 year old friend of my daughters who was coming home with us for a quick play date astutely observed that Josh was very happy.  Truly, my son was a complete delight in that moment, a profound treasure.

Minutes later, the sun went down on my affections for my beloved.  I lost track of Josh for a few minutes as I was shifting into "getting people headed toward bed" mode.  My girls came home from piano, swimming and choir with many stories, requests and needs.  The world series was on TV so that also snatched up pieces of my fragmented attention.  As I was battling dishes while serving up placating slices of cake,  in the corner of my eye I saw that Josh's bedroom door was open and my bedroom door was closed.  I knew in an instant that he was not hiding out in his room but mine.  My mommy-intuition told me that something was not right.

I opened my bedroom door to see that Josh had found the pen next to my bed that I had been using to journal earlier today.  For some reason, my delightful treasure of a boy had chosen to draw all over several pillows and my brand new duvet cover.  How he had managed to draw so much in so little time I do not know.  Maybe he had thoughts or feelings or energy that he needed to get out.  He was a happy little soul, clapping and laughing, like someone who had taken a satisfying artistic dump on my bed.  

I could feel my head and my extremities tingling with the stress of the moment.  Of course, that was exactly the moment that my girls chose to have a conflict and their friend's dad was due to pick her up at any moment.  I made it very clear that they all should steer clear of Mommy for a few minutes.  

Later, at "Second Snuggle", the time I have a private chat and prayer time with each child, my daughter Hope asked me why I had been so upset.  

"Hope, pillowcases I can throw away but I am very sad that Josh ruined my brand new comforter.  I don't know if ball point pen comes out and king sized comforters cost a lot of money."

Hope looked squarely at me and said, in her very 8 year old, Hope way, "Mom, you are too concerned with how things look.  Josh's designs look pretty.  A lot nicer than your boring old comforter.  You should be happy that he drew on it."

I was tempted to just scoff and dismiss what she said because she has no idea about how hard it is to maintain a household with a kid like Josh living in it.  But in a little corner of my heart I wonder if she's speaking some truth.  Maybe there is art in mess and some of the most beautiful art is found in the interaction between homeless people and children with developmental disabilities or in shower heads on pillowcases.  Maybe it is worth pausing and taking a look at things that autistic people draw on pillows and duvet covers.  I still think that I'm too uptight of a person to truly appreciate beauty in the midst of mess but I'm trying.

The Purpose of a Flower

“In many ways we are like the busy man who walks up to a precious flower and says, ‘What for God’s sake are you doing here?  Can’t you get busy some way?” and then finds himself unable to understand the flower’s response:  “I’m sorry, sir, but I am just here to be beautiful.”    

                                                                        Henri J.M. Nouwen    Creative Ministry

When my son is being slow I find myself so easily frustrated.  Sometimes it takes him forever to get out of the car or to decide that he’s done at the toilet.  The busy mom in me, who is always aware of the millions of other things that I need to get done that minute, is tempted to blurt out, “Josh, why can’t you go faster!?”

Life with Josh is never expeditiously productive.  Josh doesn’t think very quickly.  His body doesn’t decide to do things very easily.  Communication with Josh is like being at a coffee shop with intermittent wi-fi. 

Usually, at the zenith of my impatience, I find that God gets my attention.  He often plants a question in my mind like, “Why do you need Josh to be more effective and efficient?”   I am guessing that it has more to do with how I feel about myself and about my life than a true assessment of what my son is able to do in that moment.

I also begin to realize that my son was not created to be fast.  Josh will never be a resident in the realm of high productivity or immediate transformation.  

Josh is here on this planet to be a parable about a different way.  His purpose is to make people slow down, even to stop for a bit.  His impact will be on those who are willing to pause and rethink our assumptions about how things have to be.

The other day Josh walked out of the house loudly munching on a zucchini like it was an apple.  I had a knee-jerk response to rebuke him.  “No, Josh, we don’t eat uncooked zucchinis!”

One of my girls asked, “Why not, Mom?”

You know what?  I did not have an answer.  Yes, it was unwashed but that isn’t the biggest deal in the world.  Why can’t you eat a raw zucchini if you want to?  I have eaten them diced into salads before.  There is nothing inherent in a zucchini that necessitates cooking.  If my child is happy to eat a vegetable, without my forcing him to, why would I stop him?

“Well . . .  go ahead, Josh.” 

I put my unemptied grocery bag and armful of jackets down and sat on the bench in front of my house and watched him eat the whole zucchini with great gusto like it was a sweet, juicy peach.  Upon finishing, stems and all, he looked very satisfied and amused.  He started clapping and humming, choosing this moment to have a little celebration.  Watching Josh quieted my spirit.  I smiled, knowing that Josh had been placed in my life just to be beautiful. 

The ABCDs of Summer Special Needs Survival

Well, summer school is over and so is our week of family vacation.  Ahead of me is 33 potentially tedious and stressful days of keeping my kids occupied before school starts back up.  Although the girls still have some day camps, Josh is at home with me all day for most of those days. This morning I had a momentary flash of panic.  How am I going to keep my sanity while juggling the kids at home during this second half of summer?  How can I arm myself for the unavoidable moments of conflict, stress or boredom that are likely to present themselves?

While searching parenting websites I saw something that both amused me and gave me hope.  It's called the ABCDs of a parenting bag of tricks for avoiding a meltdown or easing a tense situation.  A for amuse, B for  bribe, C for comfort and D for distract.  

I was thinking about how I can apply this with a child with special needs.

Amuse.  It's tricky to know what will amuse Josh.  He often just starts laughing and it's hard for me to know why.  It's hard for me to share his joy or amusement because it often just seems to come from no where.  Also, Josh doesn't seem to care if someone is laughing with him.  Still I do know two things that amuse Josh to no end: a brisk breeze and music with a good strong beat.  I am going to spend more time walking with Josh along the Bay and I'm going to get out our electric fan.  Also, I need to find more clean rap stations on Pandora (if that exists).  These things are not technically "funny" but they make Josh laugh so I think it counts.

Bribe.  Motivators are often difficult to think of for kids with autism.  They are simply not motivated by the typical things that kids want like toys, money, verbal affirmation or the promise of anything that takes place more than 2 minutes from that very moment.  Over the years, I have had to get very creative to even be able to think of things to bribe Josh with.  Sugary food always works but I don't want Josh to gain a lot of weight so I need to think ahead about what else I can use to bribe Josh.  Thus far I can think of the following:  1)  watching YouTube videos of people installing shower heads,  2)  being wrapped up in the comforter on my bed and being squeezed and 3) anything having to do with playing with water.  When the kids get overtired or bored or stressed, I have been known to just march right outside and spray a big spring of water high up in the air and let my fully dressed kids get soaking wet. We call it "carwash" but it's more like kidwash.  It seems to me that they key to bribing well is to think ahead about what are things that you'd be willing to use as bribes that you won't regret rather than turning to something in the moment that you don't really want to use as a motivator.

Comfort.  Josh has always been the child who is most likely to want to snuggle.  However, lately, he's exhibiting more pre-teenish desire to be physically independent.  To my dismay, he often doesn't even want to hold my hand while crossing the street!  Sometimes, when I snuggle in with him in bed he will say, "Want Mama to go away." This is very sad for me.  Without physical touch, how do I connect with Josh?  Strangely and fortunately, there is one thing that comforts my son to no end.  Like many things in the autism world, it's a little bit weird.  Josh likes to sniff my hair.  Yes, I do take showers and I don't think my hair smells any different from anyone else's hair (I think) but, for some reason, when Josh is stressed, one of the things that comforts him the most is being able to stick his face right up to my long black ponytail and taking a couple of good whiffs.  There have been many an anxious moment at a busy Safeway where Josh suddenly announces, "Wanna smell Mama's hair!"  And if I'm desperate enough, I let him do it. Yep, right there in the middle of the grocery store or whatever.  Odd it is, and we will definitely have to fade this behavior at some point but, for now, it comforts my son and I need this tool in my pocket to survive the summer.

Distract.  In order to survive any outing with Josh, one must have lots of music. . . . car stereo, ipod with headphones, chimes on one's cell phone, whatever.  If you ever get caught in some situation without music, you must distract Josh by singing one of his favorite songs, the louder the better.  The other day we were waiting for my daughter's swim lesson to be over and Josh was just on the edge.  He started whining loudly and demanding to go home so I had to sing "Party Rock Anthem" and dance with him in circles under a tree at the park.  Instant distraction!  It bought us the 6 more minutes that I needed for Anna's lesson to finish.

Reflecting on these ABCD's made me realize that the main point of them is to take it easy and to not let the situation spiral in a negative way.  I also need to think ahead so that I can amuse, bribe, comfort, and distract myself at times so that I can keep it mellow and not buy into being too stressed out, tense or angry as we walk through the second half of summer.

What about you?  What's in your parenting bag of tricks so that you can have a good rest of the summer?