The Cycling Life

 Janey turned 18 last month.  I would have pictured myself writing a post about that, talking about her becoming an adult, reflecting on her childhood.  I found myself unable to do that.

It hit me today what made it so hard for me to write about the milestone in Janey's life.  It's the lack of forward motion in her life, and ours.  Janey changes, all the time, but the changes are cycles, for the most part.  There are many Janey modes---very happy Janey, talkative Janey, sleepy Janey, crying Janey, quiet content Janey, no-sleep Janey, manic Janey---and there have been, right along, since the regression and start of her autism, when she turned three.  Days today, with the exception of her being older and bigger, could be days when she was 3, or 7, or 12, or 15.

I'm sure some who know Janey will say, and probably rightfully so to some extent, that that isn't true, that she's made progress. And who is to say what progress is?  But at a very basic level, she hasn't.  I think we've learned about her more, we understand her more, we know so very well what makes her tick, how to best respond to her varying states, how to keep her happy more of the time than not.  But progress?  I'm really not sure there has been much of that.

Does it matter?  In some ways, no.  We aren't holding Janey up to some standard that just doesn't work for her.  We aren't working toward a goal that will never happen.  She won't hold a meaningful job, she won't live on her own, she won't get married or have children, she won't drive a car or read books or go to college.  Much of progress is working toward goals.  The kids she started school with are going to college now, preparing for careers, maybe meeting their future spouses.  The progress they have made over the years has led them to this point.  I don't think it was ever in the cards that progress Janey made would do the same---so does progress matter?

The last few days have been in the mode of one of Janey's toughest personas.  She is not sleeping, she is crying half the time, she is pacing and volatile and demanding.  But we know it won't last.  She will pass into another mode---maybe the sleeping all the time mode, or the cheerful but quiet mode, or the rare very talkative and happy mode.  That's the flip side of cycling rather than progress.  Progress, if you think of it as permanent change, could mean that tough behaviors will never go away, and we have learned that with Janey, if you wait it out, they do, at least for a while.

I think why it's hard for me to admit to myself, why a 18th birthday sum-up was something I couldn't write, is because in some ways, we as autism parents are sold a false bill of goods.  I don't think anyone is doing this on purpose.  It's more how we are as a society, and so maybe it's automatically the standard we apply to kids with autism.  We believe that with the right education, the right attitude, the right therapies, the right parenting, the right foods, the right medical care, the right everything, our kids will progress.  We tell that to new parents with autism. And for some kids, it happens, and they attach a causation.  They assume the progress is because they did the right things.  But I'm here to say---that might not be the case.  You can do everything right, and your child might still not be toilet trained at age 18.  They might not read.  They might not talk any more than they did as a toddler.  They might not be able to do basic tasks of adulthood like walk to a store by themselves and buy something.  On the other hand, you might do nothing that is supposedly the right thing to do.  You might be the most hands off autism parent in the world, and your child might undergo a total "cure".  I honestly, truthfully have come to believe that's the nature of the autism beast.  There's a natural history of each person with autism, one we have very little control over.

So---what's the deal here?  Today, because of lack of sleep and days of trying to keep Janey from crying, I feel pretty down.  But overall, I don't think the message is totally a negative one.  I think it's one of acceptance, acceptance that goes beyond the lip service sometimes given acceptance.  Janey is amazing.  She's one of the coolest people in the world, one of the most interesting people, one of the most fun people.  She makes me proud every day.  And that isn't because of progress.  It's because of who she is and always has been.  That doesn't mean life with her is easy, or that we don't need a lot, lot more help that we usually can get.  It means we value her for being her, not for meeting goals or checking off milestone boxes.  

Happy birthday, Janey.  Welcome to adulthood.  It might not look like most people's adulthood, but it's just as valid, and valuable, and we celebrate the memory of your childhood and look forward to knowing you as an adult.

As Janey nears adulthood

 I've had a very hard time getting myself to write a blog entry lately.  I think this is because next month, Janey will be 18.  She will be an adult.  It's hard to believe, as is the case with any child turning into an adult.  But in Janey's case, it's more bittersweet than it is with most children.  

I keep feeling like I need to somehow sum up Janey's childhood, to tie it up in writing.  And of course I can't.  And of course also, her 18th birthday is just a number.  To her, it won't make a difference.  She doesn't understand what it means, in any way.  To us, it's going to change things mostly just in that we need to get legal guardianship of her.  It won't change our daily life at all. But still---it feels like a milestone, or in some ways, like a deadline that has run out.

I guess there are two ways we can view Janey's childhood.  

One way, the more positive way, is that it's been a journey to acceptance, to understanding.  I can say a few things completely honestly.  Janey's intellectual disability, which is very significant, seems completely unimportant to me in terms of how I see her.  I don't think it means a lot in terms of who she is, her core personality, her Janey-ness.  I can also say that she is a joy to us, that Tony and I can't picture what our life would be without her, that we love her as much as it's possible to love someone.

I noticed as writing that last paragraph that it wasn't really about Janey.  It's about our feelings toward her.  And that is mostly because I truly have no idea how Janey feels about her life.  But I hope she would also say that as the years of her childhood went by, things got better.  We came to understand what she liked and what she didn't, we got her into schools that increasingly valued her and made her days interesting, we learned what we could ask her to do and what she wasn't going to be able to do.  I hope she is content with her life at this point.

The other way to view her childhood is, well, in some ways a tragedy, a failure.  I don't say that because it's how I feel about it, but looking at it from the outside, I am sure that some might.  She went from a two year old who talked a lot, and who despite not walking until very late, seems destined to be a typical child, to a near 18 year old who has never, ever recovered speech after her huge regression to anywhere close to her two year old level.  Academics have never really kicked in for her.  She might know a few letters and numbers here and there, but she can't write, can't read, can't do any math.  She speaks in familiar phrases, with very few exceptions.  She isn't toilet trained completely, she struggles to dress herself, she will never be able to live alone or hold a job.  She is not one of the autism-overcoming success stories that inspiring books or articles tell of.

But maybe there's a third way of looking at it.  I thought of this when seeing Facebook posts about girls she, long ago, was in preschool with. They were graduating from high school, going to proms, being valedictorians, getting accepted to college.  I might have thought, once, that this would be hard for me to see, but, in total honesty, it wasn't.  I was happy for those girls, very happy.  I didn't think about how Janey wasn't doing those things.  What kept coming into my head was "They are living their path.  Janey is living hers"

None of us live with any guarantees or certainties about how our lives will turn out.  No-one can say, when holding their precious newborn for the first time, what path that child's life will take.  What if we radically accepted that, if we were able to just celebrate what our child does do, what she brings to the world?  I'm saying this while fully admitting I can't do that totally.  Part of the reason, much of the reason, is that I don't know if Janey wants her life to be the way it is.  I just don't know that.  I will write more about my thoughts on that in another blog entries, hopefully soon.  But I will say it's not really up to me, it's not something I should say, to decide if Janey's life is a triumph or a tragedy or somewhere in-between.  And I think a source of much of my sadness when thinking about her life is that she herself can't tell me that answer.

So---I can't sum up Janey's childhood.  But I'll say this.  It's been quite a ride.  And I know it will continue to be so.  And I will continue to write about it, maybe more than I have lately, because autism doesn't end with the end of childhood.  Janey, we will be with you as long as we draw breath, and we very much hope we can give you the adulthood you deserve.