Why We Don't and Why We Should

Reasons why we, the parents of children with low-functioning autism, don't write or talk as often as we might about how tough our lives can be....

Because we don't want to hurt those who share the "autism" part of the diagnosis but not the "low-functioning" part.

Because we know it's natural for people to only have a limited capacity to hear about how hard things can be before they get tired of hearing it.

Because we are too tired to talk about anything.

Because we know it's more politically correct to emphasize the positive.

Because sometimes we are so used to it that it doesn't seem newsworthy.

Because the other people living this life already know how it is, and we think people not living the life generally will never quite get it anyway.

Because we think if we don't put the worst of it into words, it won't quite be as true.

Because we have been taught there is no point in complaining about things that can't be changed.

Because we don't want to hear about "solutions" that don't exist or don't work.

Because we are tired of hearing about all that Temple Grandin's mother did.

Because we feel secretly like we should be doing a better job, and if we were, it wouldn't be so hard.

Because we love our kids so much that it's hard to believe, and admitting how hard our lives are with those same kids feels wrong.

Reasons why we should break the silence and talk and write and shout about it...

Because otherwise, the world assumes autism means Temple Grandin and math geniuses and slightly quirky girls who don't get diagnosed until high school because it's so hard to tell they are actually autistic.

Because maybe, just maybe, if people knew the truth, they would want some of their tax dollars to go toward helping us.

Because when our kids melt down in public, it would help if people didn't assume we were bad parents or they were bad kids.

Because most people could handle the truth.

Because our kids deserve to be written about, to be seen, to be known, as much as all the other kids on earth.

Because of books like the one I read about girls with autism with the line I will never forget "Girls with autism have a very bright future", and the chapter of advice about when our girls get to college.

Because not talking about something means it's an unspeakable tragedy, and our kids' lives are not an unspeakable tragedy.

Because the school system needs to figure out what to do with kids who have had many years of academics and have not learned anything academic.

Because we love our kids so much that we can tell the truth about how our lives truly are in a way that still lets that love shine through.

Because try as we might not to, someday we parents are going to die, and that is the scariest part of all, and it might be less scary if society actually knew our kids, our kids who will someday be adults and will need help that does not yet exist.

The Autism School Bus

For many years, I didn't use the school buses for my kids. There were lots of reasons---I enjoyed seeing them at school in the morning and afternoon, the bus stops for "regular ed" kids were often far, far from our house, my older son's school for years was within walking distance---but most of all, I didn't like the thought of them being on a school bus.  I saw school buses full of kids around the city, and they often looked crazy, full of kids that weren't staying in their seats, were sometimes hitting each other, were screaming things out the windows---it just didn't look safe.  And I spent many hours of my own childhood on buses.  We had one wonderful bus driver, but others not so wonderful.  Going to high school, the back of the bus was filled with kids smoking, and not just cigarettes.  The roads were often icy or hazardous, and the time on the bus was at best boring, at worst a hothouse of teasing and bullying and physical fights.  So I decided since I was home, I'd just drive the kids.  And that worked.

But when Janey recently changed schools, I decided to give the bus a try.  Part of that was just burn-out.  For 14 years, I had driven twice daily to her school (which the boys went to before her).  It was a drive that took between 20 minutes and an hour, each way, full of crazy turns and traffic and roads with potholes.  Janey is eligible for door to door transportation, so I could get a bus to come right to our house and get her.  And I thought the change of schools would be a good time to make the change of transportation.

Putting her on the bus this morning, I reflected on how amazingly well the change to the bus has gone.  The drivers and aides seem great---professional, calm, nice.  The bus shows up exactly on time, and Janey gets on happily.  I don't have to drive.  However, I think one of the big differences is the kids themselves.

Janey's bus is all kids from the autism program.  And maybe it's not politically correct to say, but I'll say it anyway---I'd rather have Janey ride on a bus with all other autism kids than "typical" kids any day.  Autism seems to lend itself to bus riding.  Everyone has an assigned seat, and they sit there, happy in the routine.  Nobody teases or bullies or hits.  Everyone looks happy to see Janey get on---she is part of the routine now, and I'm sure many of the kids have the sequence of stops memorized, and like to see each one play out.  Nobody is smirking or practicing their latest insult or just being a jerk.  It isn't in the nature of the kids, the boys (all boys except Janey)  Another thing I'm not supposed to say, but again, I will---most all of them have that look that you often see in autistic kids---that beautiful angelic kind of look of innocence.

I'm not living in a dream world here.  I'm sure there are meltdowns on the bus, I'm sure every one of those kids at times is as tough as Janey is at times.  But for the moment when I'm putting her on the bus, I think sometime I don't usually think.  I feel, for a fleeting moment, completely happy with autism.  I am not turning into a "sparkly hearts filled with magic" autism mother.  Life's realities are not going to allow that.  But seeing those kids, seeing Janey sit down in her seat, knowing that she is surrounded by other children that lack the meanness that is a part of almost all the rest of us, I feel at peace with autism.

The Political Incorrectness of Negative Emotions

I've been reading a book to review for Amazon called When We Were the Kennedys. I haven't finished yet, but can already say it's a great book. It comes out in July, if anyone is interested. Anyway, although it's not the major point of this memoir, the book talks about the author's sister, Betty, who "in those days was called retarded". As I bet most parents of kids with what we now called special needs do, I compared her to Janey. She was higher functioning (another now term) than Janey---she went to a regular class, although she in no way kept up with the other kids, she could answer questions and write her name and knit a little.

What struck me about it all was how it was then (in the early 60s) okay to express that having a child like Betty was in a lot of ways very, very hard. It was okay to think of it as a tragedy, in a lot of ways, and for other people to feel sorry for the family. It didn't seem like people were told to see Betty as a blessing or as a treat from God for being good parents (although the family was very religious and did seem like very good parents). Betty was loved, but it was not presumed that she was somehow sent to teach everyone lessons in tolerance and love.

Today, I think there's a huge amount of pressure to think positively about disabilities. And that is good, in a lot of ways. I wouldn't want people seeing Janey as a tragedy, or people just shaking their heads and assuming that there's nothing that can be done for her. But in other ways, it puts a huge amount of pressure on parents. It isn't even politically correct in most cases to say truthfully that Janey is retarded. "Retarded" is a bad, bad, bad word. You can say "developmentally delayed" or "cognitively challenged" or terms like that, but the problem can be that no-one quite knows what you mean. I still think often of when one of my oldest friends, that doesn't see Janey often, was shocked when she realized how behind Janey was. She had equated autism with what a lot of people do---someone quirky and brilliant. And I said the bad word. I told her---Janey is retarded. I feel guilty writing that, like I'm being horrible. But it's true. It's a negative word, but why is that unacceptable? It's not a blessing that Janey has so much trouble learning. It's not a test, it's not a puzzle to be figured out. It's something that is wrong with her brain, and makes it very hard for her to learn. I don't see that as a positive thing.

If you do a quick read of a lot of blogs about disabilities out there, you can see the pressure put on parents to be positive. I think there's a lot that doesn't get written down. Or maybe I'm the only one. But I don't think so. I love Janey, I often delight in Janey, I find her fascinating and adorable and I in many ways love being her mother. But all that being sad, I have huge amounts of sadness, anger, discouragement, depression and frustration over how life with her is. This morning is an example---she screamed from the time she woke up, she fought getting dressed and her hair done with tooth and nail, literally, she kicked things around in the car, she ran away from me in the schoolyard, she tossed her shoes away as I tried to get her into her classroom. I don't feel positive about that. I feel worn out, discouraged, depressed. I feel those feelings for myself, and even more for Janey. I worry about her life. I despair when I think about her when I am someday gone.

There was so much about the past treatment of people like Janey that was awful. There was no special education, there was little understanding and life for the Janeys of the world was bleak. I'm certainly in no way at all wishing it was then. But I do wish it was still okay to not be positive now and then, to openly say "This is extremely hard. This is not fair to any of us". And so I'll say it.

Developmentally Disabled

I've heard a lot of discussion lately about the word "retarded". I've touched on it before---in some ways, I wish it could be reclaimed as an acceptable word. I would NEVER want it used as an insult, toward Janey or toward anyone else. One of my proudest parenting moments ever was when Freddy told me that when kids at his school were throwing around "retarded" insults to each other, he stepped in and said "Hey, guys, don't say that. I have a sister who really is retarded, and it's not something to joke about". That took a lot of guts. And he gets it---that in the right situation, it's a descriptive word of a developmental level. More so than one of the more used euphemisms, "developmentally delayed". I don't like that, because it implies that at some future date, the child will catch up. If a bus is delayed, that doesn't mean it's NEVER getting there. And of course, like every mother on earth, I dream that someday, Janey will catch up completely, go to Harvard and become president. But I don't think she will. I think she will make progress, but I think she will always be behind. So if it's not correct to say "retarded", perhaps "Developmentally Disabled"? That's a mouthful, but more accurate, I guess.

And why does it matter? Well, because her other label, autistic, includes such a huge range. I know people "on the spectrum" that are brighter than most of us would ever dream of being, in our wildest dreams. I have a son originally considered to be on the spectrum who is currently first in his class. And the wide umbrella of the spectrum means that saying Janey is autistic sometimes leads people to assume she is a far different person than she is. You would hope they'd just get to know her and know who she is, but not everyone in the world is going to be able to do that. And I've actually had someone say to me "Oh, kids with autism are so smart!" And some are, and I'm glad that people know that. And Janey is too, in certain ways. But in the ways that get graded, she is not.

And so again, why does it matter if people know that? Well, imagine you had to explain to a child they needed to hang up their coat and sit down for lunch. It makes a big difference if the child can understand a statement like that or not. Or if you wanted them to pick their name out so they knew where to sit. You would want to know if they are just being stubborn or shy when they don't, or if they can't read. What if you assume a child of 6 should know not to run toward the road, or pick up sharp objects? What if a child is considered rude for not answering questions? With all those situations, it would be helpful to have a quick way to explain that Janey can't read, or understand much of what is said to her, or follow safety rules. Helpful, but I guess not crucial. I've used the short answer version quite a few times---"Janey is autistic and doesn't talk much". That usually works.

I've noticed lately that Janey is doing a lot of things two year olds do. She wants to take off her clothes a lot, which is a "two" thing, she dumps out water or small items all the time to see and hear what they sounds like on the floor, and she is enjoying saying "NO" more. Today I took her to get Pringle Chips, her favorite treat. I found them on the shelf and said "Is that what you want?" and she answered surprisingly directly---"NO!". She then put on quite an acting job, and looked over every other bag of chips at the store, and finally reached for the very can of Pringles I originally showed her and handed it to me. That's two for you. It was fun to see! And that is making me think again about the "developmentally delayed" label. Maybe it does make some sense, if it's kept in mind at some point the delay may slow almost to a halt. If she's 4 years behind now, we can't extrapolate and think that when she is 20, she will be like a 16 year old. If we do ratios, maybe she'll be like an 8 year old or 7 year old. That would be good.

So, who knows, really? Like so much, the right words, the right term, the right predictions---they are all hard to come by. Janey is Janey.