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.

Josh the Bridge

Two homeless people that I recognized from church were drinking coffee and smoking outside of the coffee shop that I had just walked out of.  My van was parked right in front of them so I stopped and said, "hello".  One of them recognized me and introduced me to his friend.  I thought that it was very interesting that, despite the fact that I am married to the lead pastor, he referred to me as "the mom of that boy... you've probably seen him around church".

His friend immediately knew who he was talking about.  "Oh yeah.  I've seen him.  He . . . uh, whaddaya call it?  He walks in circles, right?"

"He has autism."  I offered, trying to be helpful.

"Right, right.  Autism."

They were both very pleased to have the right word and did not seem at all uncomfortable about talking about my son.  They asked how he was doing and offered the observation that he seemed to be more calm on Sunday mornings.  We had a lengthy, pleasant conversation about special needs, and kids and our community.  To them, knowing that I was Joshua's mom seemed to make them more at ease with me, like we had an unspoken understanding of what it is to have hardship in your life.  It was a surprisingly warm and connective conversation given how little we knew each other and how dissimilar our lives are in many ways.

I've noticed that Josh has this effect on many others who live a different sort of life than most people.  A young teen in our church, who is a foster child, seems to have a natural affinity for Josh and offers to help out with him on Sunday mornings whenever he can.  Another woman, who has mental health issues, has approached me and has told me that she feels like she relates to Josh in having a different kind of brain.  She tells me that she sees the love of God in Josh as she watches him interact around the bagel and doughnut table.

For me, Josh is like a bridge to many different types of people, especially people who are marginalized.  It's almost as if I have some sort of instant credibility or trust that I, too, live an alternative and difficult life even though I'm a minivan driving suburban mom. This brings a richness and a diversity of people to my life that I treasure.

Growing Up, Growing Older

I still call him "Baby" even though he's ten years old and almost a hundred pounds. I am guessing that every mother has, inside of her, a sense that each of her children are her babies.  We've known them and cared for them since they were in diapers.  We've known every part of their growing up process.

Like everyone's babies, mine is certainly growing up (or at least he's certainly growing older and getting bigger).  And like most moms, watching my baby grow up is bittersweet.  He doesn't always want me to snuggle with him now and sometimes he prefers to be alone than being with me.  I marvel at how quickly these years have gone by and how he's suddenly a fifth grader!  Next year he'll be in middle school (albiet in a special needs classroom).  His childhood seems to be speeding by at lightning speed.  To watch this happen feels like a sweet pleasure mixed with pride and abject fear of the future.

The difference between my ten year old and other people's ten year olds is that mine still can't talk much or write his name yet.  He has not yet learned basic safety things such as our phone number or address and is basically still a person who needs one to one supervision at all times.

One challenge that I have is what to do in terms of going to the bathroom when we are outside of our home.  Although Josh can do most of the steps of a trip to the bathroom himself, he can't always make his way around a new bathroom.  Also, without prompts, he can get stuck on parts of the process.  For example, he would probably wash his hands for a half and hour if sometime didn't tell him to move on.  I am starting to feel the tension of bringing him into the ladies room with me when we are at doctors visits or out shopping or at church.  People are often confused and even uncomfortable with having a bigger kid in the ladies room.  Some places, such as the YMCA, posts signs saying that boys who are over 7 years old, are not allowed in the women's dressing rooms or restrooms.  Thankfully, most people are quite understanding when they see that Josh is not a typical child (and his noises or flapping usually make it clear to anyone who is paying any attention.)

I experienced this problem with surreal clarity and painfulness on Christmas Eve.  There was no childcare or a buddy program at our church on Christmas Eve as it was a "family service".  Josh declared in the middle of the service that he had to go to the bathroom so I left my girls in the care of a friend and took him .  My husband could not help because he is one of the pastors of our church and he was giving the Christmas Eve homily.  Personally, I think that being in the room with so many people was starting to make Josh anxious and he knows that the bathroom is a place  where he can take a break and be in a more "safe" place.

Now, our church meets in a community center and so there are often people around who are not necessarily there for church functions.  This day, there happened to be a homeless woman who had set up her belongings in a corner of the warm bathroom.  She did not seem to be completely mentally balanced because she immediately took great and loud offense that I had brought a "man" into the bathroom.  "What if I had taken off my clothes?!" she asked, seething with anger.  This struck me as a little funny because this woman had tied about 20 plastic bags to various parts of her clothing.  I figured that it would take her at least a half an hour to take off her "clothes".

I tried to explain that Josh has special needs and he can't go to the bathroom himself.  "Besides," I told her with an attempt at a winsome smile, "He's visually impaired.  He can't really see you all that well, anyhow."  This did not win her over.  She continued with a barrage of angry words punctuated with lots of swearing.

We could not leave because Josh, who seemed glad to get out of the room with lots of people in it, was now happy to be in a stall and insisting that he had to poo.  Then he started laughing and clapping and saying, "Wanna go poo poo on the potty" over and over again.  The woman continued with her verbal barrage of swearing and, in the background, I could hear my husband's sermon as he talked about the true meaning of Christmas or something like that.  It was, to say the least, an odd moment.

All I could think about was 1)  What am I going to do to get out of this situation? and 2)  We have got to get this kid more independent living skills.  Finally, I convinced Josh that we were done and we high tailed it out of there.

This situation underscored for me the lesson that there are a lot of things that I can't control.  I can't control the fact that my baby is growing up.  I can't control when Josh has to go to the bathroom.  I can't control his anxiety.  I can't control how other people respond to Josh.  AND I can't control how quickly his life skills develop.  What I can control is my own response to all of these things.  I can either live in anxiety about the problems that will come as Josh grows older or I can just take each situation as they come.  I can either be angry right back at people who can't deal well with Josh or I can try to have a sense of humor about it.  Difficult and surreal moments are a part of the journey.  I can let them get to me or I can laugh about them and learn from them.