Janey's request and how it hit me

Janey running down the driveway

As the weather gets more summery, Janey loves to be outside.  Her favorite thing to do is just to run around our driveway.  The driveway is fairly long, and on a slope, and she does laps, and sometimes yells out in glee as she runs down the slope.  She seem to enjoy just being in the sun and wind and weather.

Last night, after a car ride with Daddy, I went outside and sat on the steps by the driveway to keep an eye on Janey as she played.  After a few minutes, she came over to me and said "Want to snuggle on Mama's bed?"  I took that to mean what it usually does---that she wanted to go in and have us both get on her bed for a snuggle (the bed is Janey's, but it seems to be named "Mama's Bed")  I started in and waited for her to follow, but she didn't.  I said "Come on in, Janey" and she then said what set me back "Want to go away?"

Janey says "Want to go away?" a lot now, but until now, always inside.  She often wants me to go in the next room, to get out of her sight a bit.  I try to do just that, whenever I can.  She has a right to time to herself.  Of course, I'm always keeping my ears open, and every few minutes, taking a peek to make sure she's okay.  She almost always is, or if she's doing anything that I need to stop, it's things like fixing herself a bowl of salad dressing like one would have soup, or trying to re-arrange the cats when they don't want to be re-arranged.

Up until yesterday, though, Janey had never asked me to leave her alone outside.  And, of course, I can't.  I can't leave her alone outside, ever.

I tripped over my words in answering her.  I wasn't expecting the request.  I said something along the lines of "Mama has to stay out here with you.  You're not big enough to be outside by yourself.  I need to be here to take care of you".

Of course, Janey is old enough that if she were typically developing, she could certainly be outside by herself.  She's 13.  When I was 13, almost every day after school I walked through a little woods across from our house and spent hours at the shore, exploring the rocky banks of the St. George River in Maine.  I love being alone.  I always have.  I crave that time alone.  I'm not sure if Janey notices, but if she does, she's probably seen plenty of girls her age without parents, walking down the sidewalk or in stores or the like.  But she can't be those girls.

We live on a very busy street, one almost like a highway.  Janey has never run into the street, but I live in fear of it.  There is also lots of foot traffic on the sidewalk, people I don't know and obviously can't leave a mostly non-verbal child with no understanding of the dangers people can pose alone outside.  If none of those were a danger, there is the fact Janey sometimes eats non-food items, that she might decide to push aside a stray cat or dog, that she just simply doesn't have the skills or knowledge to take care of herself alone.

Janey gave me a long, hard look after I said no.  She didn't cry, or repeat her request.  She just looked at me.  I was almost crying.  I couldn't say something like "not right now" or "when you're older".  The truth is---it's very unlikely, pretty much completely unlikely, that Janey will ever, ever be able to be on her own in public.

After a few minutes, Janey headed to the door and we went in.  She seemed to be over my "no".  But I thought about it for hours.  I can't imagine a life where I would always have to be watched, supervised, taken care of.  Maybe Janey doesn't feel that way.  I don't really know.  I guess I hope, I hoped, she didn't.  It's easier to hope that, to hope she doesn't see how her life is limited.  As she gets older, as she gets to ages I can so vividly remember being, as I look at her and see a beautiful teenager, sometimes my heart breaks for what her life can't be.

Growing Up Fears

The other day, I glanced at Janey asleep on her bed and had the thought I think every parent has at one point---I thought "Who is that?"  She looked so big that for a minute I didn't recognize her.  Janey is growing up fast.  She is outgrowing her clothes like crazy, she now wears a woman's size 7 1/2 shoe (we all have big feet!) and after always looking younger than her age, suddenly she looks older than her age.  That is something that seems to run in my family---early maturation followed by ending up not very tall!  I am proud of my girl growing up, but I am also scared.

The world isn't as kind to autistic teens and adults as it is to autistic children.  This isn't something planned, but it's the truth.  I fight it very much myself, when I see an adult acting obviously oddly.  I tell myself "That is Janey some day" but there is something instinctive that makes me uneasy, that puts up a little guard.  I hate this about myself, but I have to be honest.  We expect kids to act in unpredictable ways, but when adults do, it takes a minute to see that they have special needs.  Here's another post by the mother of an autistic girl that tells of these worries very well----link here.

There is also the deadline that hovers over all of us in the alternative world of fairly severe special needs---age 22.  The schools will educate Janey until she is 22.  Then, she is an adult, and there is no more requirement by anyone to educate her.  I hope very much there will be programs in place for her at that point, but it's not a certainty.

These things combine to make me wish time would slow down.  Janey getting older isn't going to lead to the milestones we dream of for our kids---college, marriage, a job, kids of their own.  Janey getting older means for a large part the same Janey, but in a bigger body.  That must be incredibly frustrating for her, to the extent she understands it.  When I think about that, I can understand her screaming.

Of course, there is small ways in which Janey does get more mature, and I love seeing them.  Yesterday after school we went to the ice cream store, the neighborhood market.  It's just a very short way from our house, and Janey was impatient with my slow walking.  I made her stay next to me most of the way, but on the way home, I told her once we were just in front of houses that she could go ahead.  She ran to our driveway, and then turned and came back to me.  I told her she could go down the driveway by herself, and she ran and did that.  I thought about how just a year ago, I would not have dreamt of letting her run ahead of me, and I felt proud of her.  She is progressing in little ways all the time.

In thinking about Janey's future, I wonder if we are preparing her for it in the right way.  I think about what she learns at school.  School is set up for a future that it's unlikely Janey will ever have.  She is learning things that are meant as foundations of reading and writing and as an ultimate goal, a career or college.  She doesn't learn these things easily, or at all.  I wonder sometimes if her time would be better spent learning other things---how to prepare simple meals, how to do small house chores, and very importantly, how to enjoy the things she can enjoy---running, music, swimming and things like that. More and more, time spent trying to get Janey to say letters or count objects seems a bit wasted.  But when she learned how to throw away her own pull-up, how to put her clothes in the hamper, how to pour herself a glass of water---those things made her life and our life and her life happier and easier.  I picture a goal of her someday maybe walking to the ice cream store on her own.  We would watch her go, maybe trail her, but I picture her going in, picking out the ice cream, taking it to the counter and giving them money.  The workers there are so kind to her---we could prepare them ahead of time for her visit.  And she could walk home on her own.  That is a goal I would love to aim for, maybe 5 or 10 years from now.  It might seem like a little thing, but working toward that might make more sense than working toward reading.

The next big step our society is going to have to prepare for is all the current child with autism no longer being children.  We need to think seriously about what we would like their lives to look like, what THEY would like their lives to look like.  That is what I am going to start doing with Janey.  I think she has a chance at a happy life.  It's not going to be the life that most people lead, but I can see it being a life that has its own meaning and joy.  That is, I can on hopeful days.  On discouraged days, I am terrified of that future.