adult services

14 February 2012

True Colors

The other day I was trying to explain some of the more practical points about autistic behavior to people who work in schools but do not have a lot of interaction with autistic kids during their day (the event leading up to that particular conversation is the topic of a post to be named later). These folks should know more, they should interact with the kids more, but they don’t.  On some level, there is only so much you can expect from the uninitiated – there are lots of disabilities and syndromes that I don’t understand because I don’t live with or near them. Most of the time, you learn because you have to; you learn because someone shows you.

During our first years of marriage we lived in a town near Boston in a little house on a quiet street.  Across the street live Sergei and his wife and their two or three children; I can’t recall how many of them there were, but each morning he would stand outside and wait for a school van to come and pick up his daughter, who must have been 12 or 13.  Sergei was big and square with a bushy mustache and large rectangle glasses.  His daughter – her name was Leah (Lia?) – was tall and thin with long black hair, a distant smile and wandering eyes.  It was always the two of them, sometimes holding hands, always smiling and waiting for the van.

My husband would talk to Sergei when he was out in the yard or talking a walk.  He was quiet and friendly, and he would bring Leah by on Halloween to trick or treat.  She wasn’t dressed up with more than kitty ears or a bright scarf.  She would just whisper the words; behind the smile she seemed to be somewhere else.  I wanted to say more to her but the words would catch in my throat; I didn’t know how to engage her and was afraid of making mistake and thus offending sweet Sergei.  I wanted to ask him about her but did not want to be rude.   So, to make up for being at such a loss, I waved and smiled whenever I saw them.

Watching the van one morning I remember thinking, “This is a kind of life I know nothing about.”  And later that morning on the train to Boston I recalled my Aunt Billie, who, in a previous generation’s vernacular, “was a little slow.”  The family talked about how Billie had gone to some of the same schools as Rosemary Kennedy, a remark whose significance was lost on me at the time.  Billie lived with our family for a brief time (a summer, maybe?) during which I worshiped her as she made fabulous art on our dining room table.  I was probably 8 or 9, and it never occurred to me to treat her any differently or feel that her faculties were diminished.  She made beautiful ink and paint designs on fabric interfacing – gorgeous flowers in vibrant colors that spread deliciously through the fibers.  Our mother had them framed and put them up all over the house.

When Aunt Billie died from kidney problems in her late 40s. I was 11 years old and the only one who got to attend the funeral in Philadelphia with my mother, and I was allowed to choose from among her things something to remember her by.  I don’t recall seeing any painting among her few things, so I chose a small needlepoint of a butterfly and her clock radio.  (In 1974, a clock radio was a big deal.)  I knew my connection to Billie was special, but I didn’t much think about how or why.  I loved the attention she gave me; she was an artist and I wanted to be one, that was all.

I still have the needlepoint tucked away somewhere, but better yet I now have several of her paintings.  A few years ago we were redecorating our upstairs and I decided to have some of them reframed – the faded dark mats and speckled antiqued wood frames were decades out of date and didn’t seem to match the art.  At the framers I chose thick white beveled mats and simple black frames, and I asked the framer to remove one painting from the old frame so we could see how it would look when it was finished.  It was then that I saw that the previous framers had backed the paintings with brown kraft paper, which, for all these years, had shone through the translucent interfacing and muddied the pigments.  When we backed the art with white paper the true colors burst forth.

All of those years, muted and misunderstood, Aunt Billie’s art was there for us to see but not in the colors she had intended.  Mom had done her best to give Billie all she needed, a place to live, the tools and a place for her artistic expression, but still the world couldn’t wholly appreciate her gift because she lived and worked on the periphery.  And as I grew up I didn’t notice the difference between the bright paintings on the table and the ones muted by the brown paper backing; I don’t think anyone did.  By then I knew what it meant to be in the same school as Rosemary Kennedy and had blindly accepted that the margins of society were okay for some kinds of people.

Now the school van comes to my house and the art is by my child, and we are doing everything we can to stay engaged in our community and steer clear of the margins.  We go to the public school and advocate for a program that is supportive and inclusive to the greatest and most practical extent.  Often it’s difficult – the margins are quiet and there are some people who need the space to be there.  But the decision has to be ours; we have the right to choose where we will be happy and how we want to belong.  And as we go, we will learn and we will show the people whose vision is obscured by the brown paper how they can remove those old dull perceptions so that they can appreciate what our true colors are.

30 January 2012

Free Us From All Anxiety

I went to Mass alone yesterday.  I usually have someone with me but I decided to go at the last minute; I needed to sort some things through.  It had been the kind of week that gave us a preview of things to come and some reminders of things we hoped were over.  At such times I like to go to Mass and check in with my parents in heaven.  I am grateful for the link they created in the common experience of going to Mass, back when the Church was a haven and when you felt guilty for not going.  Now I feel guilty when I go and when I don’t; betrayal weighs down both sides of the scales. The Golden Rule remains, though, and it is enough to bring me back.  I pray – head down eyes closed most of the time – through every Mass and wait for my favorite phrase:  “Free us from all anxiety as we wait in joyful hope…”  I hang on those words as I have ever since I can remember and they never fail to comfort.  I tell my children this; I do not know if they listen.

And so yesterday I prepared to lay my questions before God and family, knowing that the simple act of unburdening them in this way would bring some measure of peace.  Unlike many other Sundays, I was more confused than desperate. In fact, my issues were pretty typical: I wanted to come to terms with what it means for all of my children to grow up – dating, college, driving, cooking, cleaning, banking, living without me.  My job is to make them independent and if I succeed they leave me and if I fail they stay and drive me crazy.  Lonely versus crazy.  This was the problem du jour.  I needed a plan.

I listened to the priest make a reference to the movie The Exorcist, which I still have not seen because my mother – on the instructions of the Church – forbade it in 1973.  I imagined every kid in that church going home to stream it on Netflix.  I wonder if my own kids would be more terrorized by Linda Blair’s spinning head than they were the first time they saw the bleeding crucifix suspended over the altar.  It made me smile to think of that as we stood for the Profession of Faith.

I looked across the church and up at the balcony (the building is shaped like a cross with the altar in the middle) I saw a father with three boys and the one next to him was clearly autistic, fluttering his fingers and chattering away (but not audibly to me).

Several times after that I saw the Dad forcefully put this hand over the boys’ mouth and whisper in his ear, sometimes enveloping him in his arms as he spoke to him.  They boy did not seem upset or to resist his father’s embrace (the deep pressure probably felt good), but he didn’t appear to comply, either.  The other two children looked away.  The father was losing his cool, unaware that this was playing out in front of dozens of people, focused only on quieting a child who, compared to the toddlers and babies holding forth, was making very little sound.  Feeling both angry and empathetic I wanted to tell him that it isn’t worth it, that if being successful in church requires such physical restraint then maybe he needs to redefine success.  I recalled earlier times when my favorite thing about that cross-shaped church is that it has nine exits – nine ways to escape if (when) things go south.  Sometimes – rarely – we made it all the way through, but the plan of action was the same for Mass as everywhere else we went: don’t go anywhere that you can’t leave, and be prepared to leave at a moment’s notice.  Sit near the door.

The last time we went to church as a family was this past Christmas Eve, and for most of the Mass I stood behind my son – who is taller than me – trying to persuade him to keep the Kermit the Frog he had smuggled in his coat from making an appearance. The conversation went something like this:

“Why did you bring Kermit?”

“So he could hear the singing.”  He shows me that he is holding Kermit’s hands together as if he is praying.  He looks at me and then uses his other hand to clamp Kermit’s mouth closed.  With some effort, I give him a stern look.

“He needs to stay in your coat.” His eyes widened.

“Is it because he is naked?”

Tears of mirth and joy welled up in my eyes to know that he enjoyed the singing and that he was trying so earnestly to understand the impropriety of bringing a large stuffed frog to church.  I remembered how we tried to get him accustomed to the routine of the Mass, but it was never predictable enough – he was constantly startled by people suddenly bursting into song (and I noticed that not everything is sung at every Mass; it is pretty random as far as I can tell).   For him, if it wasn’t a wedding or a funeral, each of which clearly have a purpose, Mass was something to be survived.   With the help of many lovely people, we managed to get him through religious education and to make his First Communion but it was clear that the very stress of going was draining the spirituality out of the whole experience for everyone.  I prayed that the man in the balcony would learn the same lesson, and soon.

Mass with Kermit means progress, albeit the kind I never expected, and I guess that’s the point.  Drawing a map of other people’s lives as a way of defining my own will only take me so far.  Sometimes the most you can do is sit near the door.