A dream of a race

The other night, I had a dream about a race.  In the dream, as often in my dreams, I was a very good runner (in real life, I simply can't run at all).  The race was being held in a Nordic kind of place, on a snowy road.  I was near the lead when we came to a very steep hill.  I told myself I'd get up it fine if I kept my eyes closed, so I didn't notice I was on a hill.  That strategy was going well, but for some reason I opened my eyes, and I couldn't go on.  So I turned around and ran the opposite direction.  I felt unsure about this, wondering just what the procedure was for running a race backwards.  I stayed close to the edge of the road, as to not get in the way of the runners going the right direction.  The dream ended after I got back down the hill, still running.

I'm a heavy dreamer, with almost every night featuring dreams, usually even more complicated than this race one.  But the race has lingered in my mind, and I'm starting to see it as an analogy of my life with Janey.  Not that I think my mind was thinking up analogies in the night, although who knows?

The running with my eyes closed part, to keep from realizing what a steep hill I was on...well, I do that a lot, figuratively.  One way is by not being around typical kids Janey's age much.  Of course, I know that most 14 year olds can talk well, read well, are fully toilet trained, are starting on the path to adulthood.  But by just not thinking about that, I can keep from comparing Janey, and comparing is one of the few things I can say very strongly not to do.  I keep my eyes closed in other ways too. In a way, I also don't compare my life to other 53 year olds like myself.  Maybe of them are starting to see the light at the end of the tunnel of childrearing.  They are seeing grandchildren, going on trips, looking toward retirement perhaps.  They are able to do such things as eat out for dinner.  They can attend college graduations without needing to worry about childcare.  They are at a different stage of adulthood than I am.  But if I don't think about that, don't compare, my life seems, well, just my life.

When I do open my eyes, at times a despair washes over me.  I feel, like in the dream, that I can't go on like this.  I am overwhelmed.  So mostly, I just don't think about the parts of my life which have so much left the mainstream.

Then---racing backwards.  Being on an opposite path, running the same race but in the other direction.

Life with Janey, as it races on, is often like an opposite race.  We aren't preparing her for college.  We aren't thinking ahead to her life on her own.  We are preparing to care for her for always, and if we look to the end of the race, it's a scary thing.  There is not much of a set path for an opposite race.  Sometimes it does feel like we are on the edges, staying out of the way of the regular racers, the ones heading steadily to the goal.

But in the dream, I recall seeing how lovely the snowy path was, even as I ran it in the opposite direction of the other runners.  That, too, is true.  I've followed the news of celebrity college cheating with a bit of a feeling close to snugness.  I don't have to worry about that.  I read about parents struggling with homework.  Janey doesn't have homework.  I hear about the pain of breakups, the worry about girls out on their own, the body image issues...and I can feel truly glad those aren't part of my life.  Not glad for Janey, missing the highs that go along with those lows, but glad purely selfishly for me, for the more intensive but vastly different parenting she requires.

I often like to search for an image to go with my posts.  I tried and tried to find a picture that looked like the hill in my dream.  I wish you could record dreams---maybe someday soon!  But until then, I'll include a picture of Janey I took this morning.  I guess dreams are like lives.  You never can quite see what another person's dream is like.  You can never quite live another person's life.  We can just live our own, and do our best with the particular path we are following.

As a tribute to Mad Magazine, Snappy Answers to Stupid (or at least uninformed) Questions!

"Does she go to school?"

This one can still surprise me a lot, especially if it's asked by anyone under 70 or so.  Of course she goes to school.  Since 1975, all children go to school.  Are there still people who think that kids like Janey just have to stay home?


"But she'll live independently someday, won't she?"

Well, no.  She won't.  Unless something very, very unexpected happens between now and adulthood, Janey will never live independently.  And honestly, that's not something I dwell on or get upset about much.  She'll live with us.   She is not going to have the skills to safely live on her own, not at all. It's not a goal of ours.


"Did you take Janey with you on your vacation/weekend getaway/day trip?"

Yes.  Yes, we did.  Unless we do things within the hours Janey is at school, she is always with us.  I get this one more than I'd ever think I would.  There isn't anyone that watches Janey except our family and school.  No-one.  And that doesn't suddenly change because we want to go on vacation.  There isn't some backup corps of people that aren't usually there but will jump in if we are going away.



"But you must get a lot of help/services/respite/money because of her disability?"

No.  We don't.  I am not exactly sure where people get this idea.  Maybe in the past, there was more money out there, or maybe they are thinking of very specific cases, but basically, there is nothing now.  Someday, when Janey is an adult, she might get Social Security.  Some younger kids, if their famlies want it, get a lot of ABA therapy.  But there is no money for respite.  We do have a state Medicare type backup insurance for Janey, that supplements our regular insurance.  Once, for some reason, the state gave us $500, randomly, and we used it to buy Janey's first iPad.  But other than that, outside of school, no.

"She isn't, you know, SLOW?  Kids with autism are very smart, right?"

That's a tricky one.  I do think Janey is very smart, in some ways.  But in traditional ways, or in the ways of autistic people you sometimes see on TV, who are quirky but brilliant, no, she isn't.  She doesn't read, or write, or speak in complete sentences.  She doesn't have special skills, a savant type hidden ability.  She isn't going to college.  She isn't going to get a high school diploma. And that's no big deal.  She's herself.

"Have you tried (fill in the blank here with things like special diets or specific therapies)?"

 The answer is one of two things---yes, we've tried it and it didn't work, or no, we haven't tried it, and we aren't interested in trying it.  You are not going to ask that and get someone saying "Gee, we've never tried that, but now that you mention it, we will!"

"What a tragedy for you!  How do you go on? How do you live with a burden like that?"

The few times I've heard this, my breath was almost taken away with anger.  Janey is not a tragedy. She is our child.  A tragedy is losing a child, having a child die.  I know a few families who  have lost a child, and I can't even think about it without crying every time.  We have Janey.  No child's life is a tragedy.  No child is a burden.  I'm not minimizing how difficult raising a child can be, any child. But there is a difference between something being difficult and something being a tragedy or a burden.

"How do you do it?  I could never do what you do!"

Don't say this.  Don't say it like it's a compliment to us.  Don't say it at all.  You COULD do it.  You WOULD do it, if Janey was your child. You would do it to the very best of your abilities.  Saying that  you couldn't is saying we as parents are somehow specially chosen.  We aren't.  And while we are doing the best we can, making us seem like some kind of superheroes serves to give society a cop-out. Why give help, respite, services to super-parents?  They are amazing!  They are doing something other people couldn't do.  We will admire them, praise them, but we don't need to HELP parents like that!


And here's a few questions I'd like to be asked more often...

"What is Janey like?  Tell me about her!"
"What can I do to help you?"
"What services would be most helpful for the city/state/country to provide?"
"Want some coffee while we laugh about everything and anything, including but not exclusively life with a child with autism?"