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.

Heavy Metal Parodies vs. Identifying Shapes

This morning, Janey was in a talkative mood.  She danced around the house, repeating anything we said and bringing in her own quotes and songs.  It's fun to listen to her when she's like that.  Then, she stopped and sang "Is he dead or evil?" over and over and over.  For those of you who might not be as familiar with heavy metal music as I am (and you are lucky indeed), that was a parody of a part of "Iron Man" by Black Sabbath.  The actual line says "Is he alive or dead?" but Janey certainly captured the essence of metal music. She hears it all the time, due to William being an extremely devoted metal fan and also a budding metal artist, who has recorded three of his own metal albums full of his own songs.

It struck me that although that was cool to hear, it wasn't totally unusual for Janey.  She often plays around with songs and gives them different lyrics.  It's something we all do a lot around the house, for whatever reason, and it's something I do to teach her things---put the steps to a song, or the take-home message to a melody.  Janey can play with music with ease.

That contrasts with some other skills, skills the school and us at home have worked with her on for years, and which she still has trouble with.  She can usually name a circle, now, and her ABA specialist, Mr. Ken, is going to start working with her on generalizing that skill, to name things that are circular, like pizza or cookies or a full moon.  I'm glad she's learning this, and its great to see her achieve.  But it's slow going.  She's been learning shapes for 6 years now, and she hasn't mastered them.  However, some things she learns in an instant, or quite easily.  She learns a new song upon hearing it once or twice.  If I put a new app on the iPad she likes, she immediately knows where the icon is, how to enter it, and either knows or quickly figures out how to play it.  I never sat down and showed her how to raise the sound on the iPad, or to pick shows on Netflix, or how to do many other things she does on a daily basis.  How is it that some things are so easy for her to learn, and some so hard?

Motivation is part of it, but not all of it. She can be incredibly motivated to earn a reward, but still not be able to do the task that earns it.  And her limited speech skills are also not something that can explain all of it.  Limited verbal skills don't usually lend themselves to parody songs.  It just seems like her mind is a patchwork of ability and lack of ability.  It's what makes her mysterious, and what I think makes intellectual disabilities different in people with autism than in other people.  Other kids seem to be able to learn with a slow and steady approach.  It takes them longer, but they get there.  Janey seems to learn in jumps, or not at all.  It feels like I can't teach her, because she doesn't learn what I ask her to learn.  She learns what she decides to learn.  It's frustrating, but at times also fascinating.  I don't see it as there being all kinds of unlockable areas of her brain, particularly.  I see it more as a very unevenly planted garden.  You can water and water, but you're not going to get flowers where none were planted.  However, where they were planted, sometimes they will grow just on their own, without a bit of help from you.

First time saying "towel"

Janey has always called towels "scarves". If she's in the bath and wants to get out, she says "You want a scarf!" The two have similarities, I guess, as they both get wrapped around you and keep you warm, but it seems like she's encountered towels much more in her life than scarves, and it always is interesting to me to try to figure out how she picks what word to use. Today, though, when she wanted to get out of the bath, she said "We'll get a towel, to wipe your nose" A lot about that is typical of Janey's speech. She often, but not always, reverses pronouns, a very common trait in autistic speech. She usually speaks in phrases, which often are echoed from ones she has heard once or twice. I can't imagine when we used a towel to wipe her nose, and it's a little gross to think of, but we must have said that. And I'm thinking she often gives a reason in the second part of the sentence, which I realize I usually do, and she's probably copying from me. I try to kind of "add value" to much of what I say to her, to give her more words to use. For example, I'll say "Let's get on your coat, to get ready for school" or "Put on your shoes, so we can go in the car" So in saying towel for the first time I can remember, Janey either copied a phrase she heard at some point, or created her own sentence using a set structure. If no-one had ever talked about wiping their nose in connection with towels, that's kind of more interesting. She might not have been able to think of how to describe what towels do---dry me off? Warm me up? but she could think of what PAPER towels sometimes serve to do in our house, as we don't usually buy tissues. She hasn't said paper towels either, but the word is the same.

The language part of Janey fascinates me. It's very unlike typical language. It seems like the language part of her brain just doesn't work in a typical way, and she has to use other skills to create language. She is extremely good at remembering exact words of songs, and I feel like she uses that for language---"Let me pull up a time I heard the word I want to say, and use that lyric to make them understand" And the fact that after all these years, she used "towel" for the first time makes me hopeful she is still progressing in vocabulary. I wish I knew better how to use Janey's strengths to help her do so.