Today is National Siblings Day. Isn’t Every Day? Okay, Maybe Not.

SONY DSCWho thought this day up? Hallmark? Well, it’s a good excuse to sift through the photos, and it’s amazing how hard it is to find a photo that includes everyone that captures the spirit of our brood and still preserves some privacy. I think I found it.

Siblings of autistic children don’t have it easy, and we do our best to recognize their challenges and build some rewards into the process of accommodating the necessary quirks of life with autism. Remember my movie post earlier this week? Access to movies, screens and electronic devices like iPods is exponentially greater in our house than it would have been without autism (I think). We’ve made more trips to the beach, given more nods to everyone’s food preference (a special diet for one person demands more flexibility for everyone, sometimes), and we’ve tried, not always successfully, to give everyone the spotlight at time when they wanted it (sometimes they don’t).

The hardest thing so far is giving each child space from the others when they need it to create their own identity. Sometimes it’s difficult for ASD people with a developmental delay or cognitive impairment to see a younger child grow past them, as it were. And siblings are not always diplomatic in creating the separation that’s necessary for them to grow up. It’s hard to do and hard to watch; everyone involved experiences frustration, anger and hurt. It’s typical for all families to go through this, but as parents it is much harder to keep ourselves from intervening than we expected – we are so invested in the idea of inclusion that we have to remind ourselves that our children need to prepare for a life apart from each other. If we give them the space they need now, we hope the bonds they forged when they were young will stay strong after the angst of adolescence has passed. That’s the idea, anyway.

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.

Friendship, Take Two

A lot of people talk about becoming alienated from friends – even family – when they have a child with autism.  Part of it is the total preoccupation that comes with addressing a newly diagnosed child’s needs – you don’t have the energy or the interest in keeping up your end of the conversation on things that used to matter. Many marriages do not survive this phase, let alone friendships.  Granted, for some people it isn’t a phase, because depending on the intensity of the child’s needs, that preoccupation doesn’t ever subside and there is a full-scale retreat into a necessarily specialized world.  But there is usually a point at which you look up from your computer or IEP or daily schedule or home log and think, “I miss my old friends and the way I used to be with them.”  Despite the fabulous relationships and real camaraderie I have with the friends I have made with kids on the spectrum, I get the feeling that I have somehow lost something so valuable to me in my younger years.  It’s real work to remember the person I was and to figure out whether any of the old me is left.  It helps to have a partner who shares the emotional care of our child, especially because my parents have already passed and taken with them the objective (kind of) view of my younger self.  I know we change as we get older and that midlife naturally brings on a certain kind of navel gazing and regret, but there’s nothing like parenting a person with an alternate reality to really turn your self-image on its head, so to speak.  But if you have typical children you are also raising you need to have one food planted firmly in their world, and that, too, can be alarming as you remember your clueless adolescent years and find yourself alternately missing those times and being embarrassed by them.  At this point I am haunted by my self-absorbed teenage self and the graying face in the mirror – all the versions of me in-between are currently out to lunch.

But now, suddenly, I am encountering friends who are coping with challenges that I grappled with earlier in my life.  Aging parents and chemically dependent relatives, like an autism diagnosis, are now sending others into crisis mode and now I am the one on the outside looking in, and I see that it is hard to know how to be a friend to someone immersed in crisis.   I have to remind myself to be a good listener, and to understand when to ask questions and when to change the subject.  The hardest thing, surprisingly, is to not get frustrated with them when I think they are focusing on the wrong thing.  When talking with parents of children with special needs you develop a brutal battlefield type of honesty that allows you to tell someone to find a new doctor, hire a lawyer, or call the Department of Education.  That kind of candor does not serve well in these situations, any more than it did for me in that first year after the autism diagnosis when I could not bear to take my son in for some kinds of testing because I knew it would be torture for him.  People who tried to push me into action only sent me deeper into the cocoon I created for my family as we plotted our next move, which I hoped would result in the emergence of a fully recovered child.  With the miraculous help of the internet, I plotted the steps that I could take – I think of that scene in Indiana Jones and the Last Crusade, in which Harrison Ford has to close his eyes and take the one big step to cross the chasm that stands between him and the Holy Grail.  It is a hold your breath moment, followed by many moments in which people trip lightly over the same threshold that took such courage for Indy to breach because he has led the way.  You can’t push anyone into acceptance or advocacy in a difficult situation; they have to take the first step themselves and in their own time.

As I think through this process of learning to properly reciprocate friendship again I recall a moment from last summer, when I visited a lifelong friend (some friendships did survive the crucible) in Iowa at her mother’s house, where I spent as much time as I did my own house.  I was so delighted to be back in Cedar Falls after so many years, showing my youngest son the old neighborhood.  I sat for a spell with my friend and her Mom, and we caught up on events old and new, and at the end of the conversation her mother observed, “You know, I thought that living on the east coast for all this time would have changed you, but you are just the same as you always were.”  Even though I have actively worked to preserve my inner Iowan, it wasn’t until that moment that I knew a kind of success at being myself.  All of the angst, all of the work, all of the proving myself in various venues, had not eroded who I was after all.  But there is still work to do getting back in touch and on track with friendships that have allowed autism to get in the way and to learn how to support people who are facing issues very different from ours.  That process remains work in progress.  I suppose that is what is known as life.

Washington Street, Cedar falls, Iowa, June 2011