Thursday, February 26, 2015

Acceptance and the best use of Janey's time

The last week, I've been thinking a lot about autism acceptance and what it means to Janey and to our family.  I have done some reading about it, prompted in part by my friend's great blog, On the Train With Sophie.  There is so much about whole autism acceptance movement that fits with my own beliefs, although there are parts of the idea I struggle with.  I'm realizing that, like with any philosophy, I need to consider my own child and her own needs over what might be the "rules" of acceptance, and also realizing that what I perceive as the "rules" might be wrong.  All this is a long-winded way to lead up to my thoughts about how Janey learns and how best to respect her time.

We had a meeting at Janey's school yesterday, and as always, I was impressed with the level of caring and thoughtfulness of those working with Janey.  I brought up at the meeting something that has been on my mind a lot---Janey's relative lack of academic achievement.  Despite many years of schooling and many hours of direct ABA type instruction, Janey's learning as measured on concrete academic tests would be considered by most anyone to be extremely slow, if not static.  Janey doesn't consistently know her letters or numbers.  She can't really count objects.  She shows very little understanding of shapes or colors.  She can't read, at least that she shows us except for rare glimpses.  She can sometimes write her name, although she hasn't done that much lately.  She has never drawn anything recognizable.  Her speech, although unique and interesting, is rarely useful in conveying anything but basic wants.  I have to conclude that at least based on evidence we have right now, Janey is not progressing academically in much of any meaningful way.

However, Janey certainly can learn.  I can think of hundreds of ways she's learned over the years, in areas she is motivated to learn.  She can put the TV on the channel for videos, pick through all her videos to find exactly the one she wants, put it on, remember what is coming next, sing along with all the songs and recite all of the dialogue, all that with ease.  There's a lot of learning shown right there.  If she wants her father to cook a particular dish, she can gather all the ingredients needed and bring them to him, including spices and sauces.   She can use YouTube with ease.  She learns songs after hearing them once, and can sing them back in perfect tune with all the lyrics correct.  She has a very good sense of direction.  She can go into any store she's been in before, and if there's something she likes on the shelves, find it again---including big stores like the huge Whole Foods near us.  She can imitate dances she sees on TV, far far better than I would ever be able to do.  She knows hundreds of nursery rhymes.  She knows just what time Daddy is supposed to be home.  I could go on and on.  In many ways, Janey is a very smart girl.

So---is it the best use of her time to work on academics?  Or is having her continue to try to learn to do traditional academics a basic disrespect for who she is?  Is accepting her also accepting what and how she learns?

These are questions I honestly can't answer.  But even if I could, how would I go forward?  For the first time ever in Janey's life, I've had thoughts lately about homeschooling.  Maybe it's because overall, Janey's mood has been good for quite a long period.  But still---I truly don't think I have the energy to homeschool her.  My latest thyroid test showed that again, my thyroid is working very little if at all.  I've been extremely tired.  Some days, I can barely hang on for the 3 or so hours between when Janey gets home and Tony gets home.  And the truth is---I have very much liked Janey's schools and teachers over the years.  I know they care for her, love her and want the best for her.  But schools are set up to teach academics.  I wonder how it feels for Janey, always working on something that is so hard for her, or if not so hard, something she has no interest in.

I am nowhere near ready to make any real changes in Janey's life, not at least outward ones.  But I think I'm making an inward change.  For me anyway, autism acceptance means seeing what Janey is competent at, what she enjoys, what her passions are, and valuing those things, more than looking at what she doesn't excel at and trying to change her.  Janey may never read.  She may never carry on typical conversations.  She may never understand money.  But by golly, she can do some things better than almost anyone you'd ever meet.  I am currently more up to date on the latest music than I have been since the early eighties, just from looking up the songs Janey sings after hearing them (I think) on the radio on the bus.  I am expending my food horizons---if Janey can enjoy sauteed kale with Korean hot sauce, I should at least give it a try.  I'm collecting new nursery rhyme books to try to find a few she doesn't already know.  Janey is leading the way for me in a lot of ways.

I want a future for Janey that makes best use of her strengths and joys and passions, not her areas of weakness.  That, for me, is the meaning of autism acceptance.

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