5.21.2008

Autism Versus Church

When I first read about Adam Race, the thirteen-year-old autistic boy who was banned from Mass at his parish, I was irate. Then I got broody as I sat in my own church the following day, without my own son. Then, as usual, life overwhelmed and I did not write the post I'd spent the church service mentally composing. Then TinaMc sent me a different version of Adam's story, and the irate and broody redescended.

We haven't taken Leelo to church for two years. I didn't see the point: he didn't enjoy sitting for services, Sunday School with his peers was not feasible, and even though the church offered a volunteer to mind him, Leelo has grown so strong and unpredictable that I only trust his supervision to friends and professionals.

Instead of staying home, Seymour and I decided to alternate church weeks: one of us goes to services with the girls, the other takes Leelo to haul ass ride his tricycle on bayside trails. Our family has broken into parts every Sunday for two years. I hate it. If I didn't require so much reminding about How to Be Good, or adore our church's religious education program, I would stop going.

So, part of me understands Adam's family's desire to attend services with their son. They are a family, damn it, and families do things together. I also applaud their activist perspective: Our autistic children are part of the community, we are proud of them, and we're not leaving them at home if we can find a way to make an outing work. We're here, we're quirky, get used to it. [I am so making that my new tagline.]

But then another part of me wonders if Adam wanted to be at services. I don't know him or his parents. But I am constantly fighting with myself about whether to expose Leelo to activities that he will find unpleasant for the sake of increasing his tolerance. Does it benefit him, or us? Which is fair?

I can't ask Leelo; I can only observe his behavior. Behavior that Seymour and I can interpret, but which, like Adam's, is alien to many people. And perhaps Adam is like Leelo, who wants to go out with his family, but who also needs accommodations so that his sensory triggers and stressors don't overwhelm him. Leelo loves to hum and bounce in his seat and chew on straws. Adam finds it comforting to have his wrists bound with soft fleece strips, or have his parents sit on him. What person outside the special needs world wouldn't find such behaviors odd?

But odd behaviors are not necessarily disruptive or dangerous, so this is where participating outsiders in special needs scenarios need to put on their very best thinking and empathy hats. Is the behavior truly untenable? Or does it just make you uncomfortable because you don't understand it?

Adam's behavior certainly doesn't conform to the church's expectations. And even though the church says it has attempted to make accommodations, those accommodations were not described, and I have to wonder if the family was consulted as to their scope.

For all the behavioral problems the article cited, I wonder about what no one outside the family probably saw: The herculean efforts by Adam and his family, everyone doing whatever it took to stay in that pew, week after week and month after month. They get my applause.

I feel for the Race family, and Adam. I look at Adam's picture, past the cuts on his face, and see a beautiful boy. A very big, unpredictable boy, like mine but fast-forwarded six years. A boy who sometimes does crazy things that no one could have predicted. A boy whose family is doing their very best. If they do not always succeed, that just means they need more support. They certainly shouldn't be further isolated by punitive legal actions.

We have come up with a number of techniques to help Leelo deal with scenarios he would not otherwise tolerate. And maybe it is time to see if we can use those techniques to help him sit through services. It might be slightly distracting to the other congregants; he'll be stimming with a straw, and I will be occasionally prompting him on mastered activities such as lacing cards, puzzles, and drawing on a magnadoodle. But Unitarians would rather die than openly discriminate. And it would feel wonderful to attend services with my husband and entire family.

Technorati Tags: , , , , , , ,

9 comments:

  1. I don't know your lovely son, but I think all kids have trouble sitting still in church. Really, what's in it for them? Our church does have the children's message - and the nice thing about that is that usually the person giving it offers a little something for the kids to do during the rest of the service (a puzzle, coloring page, etc.).

    But, why not take your scheduling system one step further so Leelo knows exactly what the service schedule is? I don't know if Unitarians are the same as Lutheran's ... but, every church service is the same -- greeting, song, Bible verse, Sermon, etc. etc. Create one for Leelo so that he can follow along with what's coming next during the service.

    Another thing we've done is to make busy bags -- but, I don't allow the kids to look in them or play with them during the week. That way, whatever fun I put in them is special when they are allowed to get one on Sundays. Leelo has many things that he enjoys doing, so create some new bags with new items in them each week.

    We also shocked a few of the more conservative Lutherans in these parts by dancing during songs and occasionally bringing hand-held instruments for the kids to play during the songs only (we go to the contemporary service, not the traditional one).

    And heck, if all else fails, charge up the battery pack on the mini dvd player, add some ear phones and let Leelo watch a fun video while you worship.

    The soul-pleasing value of my family worshiping together makes my heart happy. The fact that my husband is sharing his faith with his children, right beside me, is also very important to us.

    ReplyDelete
  2. I should also mention that many of the older folks (we live in the land of senior citizens - out of 800 church members, only 5% are younger families like ours) have come up to us and said they really enjoyed the fun we bring to worship. They adore our can't-sit-down son, and I'm forever losing him, only to find him sitting over with some old lady, giggling and laughing and telling her stories. And many of the folks with younger kids sit with ours, because they like to join in the fun that we bring to Sunday mornings. We've helped change the feeling of the service, so that ALL children are included in worship. That sure makes this mom happy!

    ReplyDelete
  3. I live in the twin city area (Minneapolis/st. Paul, Minnesota) and read the star tribune (in which you cite in your blog) I wanted to send you the link to that particular article but was not sure how you would respond/or think. I am not happy with the church because (i think they should) be more tolerant/diplomatic about the whole situation. I also have to agree with you on how you deal with Leelo and the church thing (takeing alternate weekends).

    Is there a way to teach/educate the public on autism/learning disabilitys that would help the casual public that we come in contact with everyday runnings around that we do in our lives that would make them more tolerant/more aware on what is around them?

    My son (my oldest kid) has ADHD and would like people to know more but do not want to come across as being on a high horse and trying to shove information down ones throat.

    ReplyDelete
  4. You said everything I wanted to say about our UU church. We left ours for many reasons, but the overriding ones had to do with NT kid's bad behavior being overlooked and my son being treated like he was infectious.

    And the pity. My god, the pity.

    It broke my heart to leave, but I couldn't continue to take the smug self-congratulation of members who clearly felt like they were helping and demonstrating saintly compassion by feeling sorry for us. The snatching their kids out of my son's path sort of gave them away.

    Sure, I could go alone, but the point of church, for me, is to be in the spirit with one's family. A place that can include obnoxious NT kids, an abusive parent, Wiccans who obviously despise children, and a creepy kitchen guy (eventually fired for being inappropriate) and can't include my son deserves none of us.

    ReplyDelete
  5. Divalea - you said exactly what I felt about the UU church! Everyone is far too PC to suggest that a child with "differences" is unwelcome.. after all, we're all about diversity, right? But as soon as that child needs accomodation (and in my child's case the accomodation is relatively slight) the problems become almost overwhelming. I feel that my choice is either teach his class myself or forget it. Or (to be fair) he COULD sit through the sermons - though he wouldn't understand them.

    It was at the church, too, that I got that icky "it must be so HARD for you to have a child with disabilities..." with the big eyes. I just wanted to whack someone!

    There has GOT to be a better way...but so far, I haven't thought of one that wouldn't involve a whole lot of work on someone else's part...

    Lisa (autism.about.com)

    ReplyDelete
  6. I think that if you go to a UU church that is anything like mine, you might be ok. UUs certainly would rather die than not take in the "inherent worth and dignity of every person" and every person includes Leelo. I know that at our UU church we make every effort to include everyone (minus the convicted pedophile that tried to join, they told him no) can enjoy services. I dont know what your church is like, but at ours they have special intergenerational services. Maybe Leelo could try one of those. I think that regular services can be really hard for ANY kid to sit through, at any church.
    I see some people have had really negative experiences with UU churches. I hope that your church is better. At my UU church (Cedar Lane in Maryland) I cant imagine any kind of fake acceptance--it all seems so genuine to me--but perhaps its buried deeper. At any rate..sorry for rambling. Let us know what happens. Good luck!

    ReplyDelete
  7. Lea and Lisa, I am sorry you had such awful experiences at your UU.

    To be clear: I heart my church and they have made offers to accommodate my son. They just don't have the trained resources necessary to do so.

    And yes, we do sometimes get the gooey "so hard, so hard," crocodile tears of sympathy there, but I am pretty good at snapping people out of their pity.

    Vanessa: You read my mind. My target is our next intergenerational service.

    ReplyDelete
  8. reading these stories makes me sick to my stomach.
    isn't the role of a pastor/priest/rabbi etc to shepard one's soul? what about: "we are all children of god"?
    denying our kids access to a place of worship is like saying that they are lesser beings.
    and what about the community, and the support and all those good old teachings about compassion and acceptance and helping the weakest, ...and beatitudes!!... such as:"blessed are the meek, for they shall inherit the earth" (matthew 5:3)
    outrageous, completely outrageous.

    ReplyDelete
  9. Good post. Bald Man and I have been switching weeks in church, since Little Man was having such a tough time with it. Recently we have been going again with him and he is doing well so far.
    But I agree, it is hard to determine what we are doing for them and what we are doing for us. A fine line as a parent.
    I really disagree with the church for what they did to that boy. I think if the parish had tried harder, they could have come up with a better solution than banning the child and I think legally it sets a dangerous precedent.

    ReplyDelete

Respectful disagreement encouraged.

Related Posts with Thumbnails