Saturday, February 5, 2011

Get on the boat

I was the first one to get on the boat when it came to addressing Isaac's issues.  That's what we used to call them at least.  "Sensory issues" or "auditory issues" or "food issues"- but all those issues add up to one thing; my kid is different.  He's not different just because he can't eat gluten and dairy or apples and bananas.  He's not different just because he can't go in the basement of Impressions 5 Science Museum for the model train show because the lights are too dim, the floor is too slanted, and the people walking upstairs sound like a herd of stampeding elephants to him (and the combo of the three give him a panic attack).  He's not just "quirky" because he walks around saying "gitta gitta gitta" or "ticka ticka ticka" and quoting movies.  Isaac is different because he is autistic.  Now he might be "a little" autistic or "mildly" autistic, but the fact is that he has more than his big toe on the spectrum.  Anyone who spends a day with Isaac can tell you that we're at least up to our ankles in autism.  I understand why people are reluctant to give a three year old a label, but I'm realizing more and more that calling this anything but what it is isn't helping anyone to get on the boat with me and see just how far we are from land.

In this metaphor land is "normal".  Lately I feel like Isaac and I are in this boat called PDD-NOS and we keep circling land.  I'm finding the boat to be a bit lonely, and I think we're running out of supplies.  We have weeks where he seems so close to typical that I can almost convince myself that he'll grow out of his quirks.  But then we'll have weeks like this one- where he got a lick of some crumbs and chocolate and we're back to the undeniable truth.  You don't grow out of autism.  You treat it.  And if you get real lucky and find the right combo of things that work for your child you might even be able to lose the label.  Treating it takes a lot of research, a lot of time, and a good dose of honesty- especially if you don't want to end up in the boat alone.

I think I've been pretty open about the fact that Isaac is different, but I don't think I've been completely honest with what that means and what it looks like.  That's partially because I tend to be a private person in some respects, and partially because what's different about Isaac is normal to me.  I honestly sometimes forget what a typical kid is really like until I chat up a pre-schooler at play group or listen to other moms' stories when we're out to dinner.  That's when I find that I censor things and only talk about the cute things he does and the progress he's made.  I don't tell you that he still purposely smears food on his face just for the way it feels.

But I found myself being a little more honest today.  I don't know if I just felt it was time, or if reading Kim Stagliano's book is making me grow a pair.  I was at an elder's retreat for church.  We were discussing how to make families with kids feel more welcome during the church service.  Well meaning members had mentioned a few too many times that we have a nursery in the basement to those with restless babies and toddlers.  More than a few people craned their neck to stare down a pint-sized distraction.  I've been the mom with the kid who refuses to stay in the nursery.  You can't really concentrate on the sermon when you can still hear your kid screaming for you from a different floor in a very large church building.  Someone from the group made the comment that "well, they don't like to leave them down there when they're crying, but nine times out of ten the kids stop crying once their parents leave anyway."  I don't know why, but the way she made the whole thing sound so easy-as-pie annoyed me.  I felt my hand shoot up and heard my voice come out a little louder than I intended.  I found myself saying something like this (and I'm paraphrasing):
                                        "I'm sorry, I don't agree.  My son is on the autism spectrum and I honestly have anxiety over the day he ages out of the church nursery.  He has echoalia which means he'll echo anything Pastor Margie says that catches his ear.  Also, he talks at inappropriate times and doesn't know that it's a problem or how to stop.  If something Margie says reminds him of a scene from one of his movies, he'll just start quoting it or talking about it- sometimes repetitively.  And if I got looks for him fussing when he was three months old, what kind of looks am I going to get when he is naming every color crayon in his activity bag over and over and over?  Also, getting used to a nursery worker is a big deal.  It took Isaac 1.5 years to get comfortable with Terry.  She left and Linda came.  It took him 2 months before he'd let me leave him with her.  So maybe we should give people a little space to do what's right for them and their kids.  If you make kids a distraction then they'll be a distraction, but if you focus on what you're in church for- they won't be." 
Saying the first line of this rant made me be honest with myself.  Most people in that room had no idea that anything was wrong with Isaac.  That's because on Sundays we shuttle in late and make a beeline for the door directly after.  That way we miss the crowd.  We have a system and we do the same thing every week.  Everything I said above is true.  I DO have anxiety about the day he has to sit in church with me.  I DO have anxiety about whether or not he'll be able to go to Sunday school next year with all the other four year-olds.  Sunday school teachers just typically aren't equipped for how to handle autism in all its dysfunctional glory.   It's being honest with myself about the things I worry about that makes me realize that the he'll-be-fine sugar that I frost everything with really tastes more like bull-crap.  I need to keep telling people the truth- even if it means using the 'a' word, because it's the only way they are going to get on the boat and help us point this thing toward land.  And let me tell you, I could definitely use the help.


  1. "Hi, my name is Kim and I have three girls on the autism spectrum." L, what a brave thing you did, for yourself and your son. No, it is not easy to share what is going on with our kids. It feels so personal and the line of respecting their privacy as humand while knowing that maybe you can make their road a bit easier by telling others is hard to navigate. I pray your Church embraces their values and brings you help, comfort and support. Ours has and it has made a world of difference for us. If my book helped you to do that for yourself, your family, your congregation and your son, then I am really very humbled. Thanks for posting this. With affection, KIM

  2. And you just made my day, ma'am. Thanks for commenting, Kim. I am honored.