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Saturday, October 6, 2012

Dreams of Janey at 30

When I was around 10, I was fascinated with the idea of being 30.  It seemed like it would be a magical age, when all the college and early adulthood would be paying off and I'd be living my real life.  I even wrote a letter to myself at 30, asking what was up with me---was I married?  Did I have kids?  Where did I live?  Was I happy?  Now of course at the ripe old age of 46, 30 sounds pretty young and far away, but I was thinking about that obsession the other day, and got thinking about what life will be like for Janey when she is 30.  My daydreaming took me to several futures for her.

First was the outright anything goes dreaming, where reality does not interfere.  In that kind of dream, Janey somehow wakes up "cured" of autism, completely "normal".  She catches up in school and goes ahead of everyone.  She goes to some exclusive college, gets a high level degree, meets some handsome, rich and kind man, gets married and has beautiful grandchildren for me, who I babysit while she works part-time at a very high paying job.  She buys me a house with an indoor pool.  The world beats a door to our path to figure out how Janey overcame her autism, and we co-write a bestseller about that.  It's a fairytale life.

Then I jolt myself back to reality and think about what kind of actually rooted in real life future I'd dream about for Janey at 30.  In that future, Janey lives with Tony and me.  We are healthy enough to care for her well.  She goes to a high quality day program, where she has interesting experiences and maybe does some kind of sheltered work.  She has her own hobbies and interests, which she pursues in the evenings and weekends.  Several times a year, she goes to a respite home, so Tony and I can vacation or just rest.  She sees this as a vacation too, and it's the same place that someday, when Tony and I can no longer care for her, she will live.  She is happy, as happy as anyone else is, and maybe a little more so, because she has less responsibilities and things to worry about than the rest of us.

And of course, sometimes I start to have the future visions that are nightmares.  Tony and I are gone, or too sick to care for Janey.  She is living in a horrible situation, where she is not well cared for.  She has regressed, doesn't talk, cries all day.  She is too heavily medicated.  She spends her days watching videos over and over and over on a TV that doesn't even come in well.  I close down those visions quickly.  They are too hard to think about.

I tell myself not to borrow trouble.  Janey is only 8.  It's a long time until she'll be an adult.  But time goes quickly.  William is 18 now, and I have no idea how that happened.  Before you have kids, you think people overstate how fast times goes by, but once you have them, you realize they understate it.  It couldn't be more than a few years ago I first saw my tiny preemie William.  But here he is, a senior applying to colleges.  And I know that time will do that trick again, and Janey will be an adult.  And barring the kind of miracle my first dream illustrates, we won't be sending her off with our best wishes.  We'll be caring for her, and depending on a society that might or might not be prepared to provide help to Janey and the many others like her, the autistic people that are no longer cute little kids.  It's yet to be seen if that will be a dream or nightmare.


Becca said...

Hi there,

I didn't see an email address so I will leave a comment. I just adore your blog. You have a true gift for writing and the love you have for your family is so evident. I appreciate your honesty so much.

I am mom to a "slightly quirky" 3yr old. I knew something was a bit different with him from the start, and he started in early intervention with speech delays and special education at 15 months. They suggested we have him tested for autism and we did, and the doc basically told me I was a nutcase for thinking he had it (thanks....). Now my son has "graduated" from early intervention and goes to a typical preschool two days a week, but is definitely still quirky. Although he has lots of spontaneous language, I identify with a LOT of what you say about your daughter's language. It is fascinating.

Anyway, enough about me/us, what I truly wanted to say is I just love your blog and I'm grateful to read it, I don't know what will happen in the future with my kids, but it was very interesting to read about your older son's progression and it gives me a lot to think about. Thank you for your writing!

Suzanne said...

Thanks so much for writing, Becca! It means so much to me. I'd love to hear more about your son! My older son's journey is a huge part of how I think about Janey and special needs in general. It's amazing watching how kids develop! If you want to email ever, my address is

I also Facebook a lot (Suzanne Amara).

Thanks again. Sometimes I worry I am too honest on here about the tough parts, but hearing from you and others that you appreciate that is great!


audball said...

My husband and I often say, "If only we had a crystal ball…." We spend so much time preparing for the future and all thinking about potential outcomes. I sometimes wonder if I spend too much time thinking and preparing for DD's future, I don't spend enough time *in the moment* and I'm really working on that - enjoying her childhood and the here and now.

Thank you for your honesty…it's evident how much you love your kids and want the best for them!

Suzanne said...

That's something I'm trying to do more of too---just enjoy Janey where she is, in the here and now. When I let myself, it's not hard to do. She goes through the fun stages as slowly as the tough stages, so there is time to savor them. Thanks for not minding the honesty! Have a great day, here in the present!