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.

Deciphering Janey's Day

One of the most frustrating parts of having a child who is not really usefully verbal is never hearing about what she does when she isn't with me, firsthand anyway.  I adore hearing about my kids' days, but with Janey, the time we aren't together is usually a mystery to me.  I hold onto any tidbit I can get from teachers or paras or therapists, but the parts that are usually the best to hear about are the little incidental things, and it's also always telling what gets chosen to tell me by the boys.  You can guess a lot from what names you hear a lot and what classes are never described.  Janey, though, remains completely silent about her school days almost all the time.

This summer, though, she is saying a bit more on our rides home from summertime school.  It's not telling me about the day, but it's echolalia that I am pretty sure comes from school.  However, out of context, it creates puzzles that are near impossible to to solve, although it's fun to try.  Today, she kept yelling out "Roll the dice!  Okay, TWENTY FIVE CENTS!"  and at one point, "Have you got any chips?"  I'm assuming it was some kind of math game, and not that they were teaching the kids some low-level gambling.  I've also heard a name over and over---Elliott.  I was trying to figure out if he was a character on TV or a video, or a real live person.  That got solved today when I saw a little boy as I went to get Janey, sitting with her class, with an "Elliott" name tag.  That was pretty exciting to me---it was one of the first times I've heard from Janey about a child in her class that was a name I didn't already know.  I've heard quite a few quotes with his name is it..."Elliott!  Don't do that!  That's not funny!" (followed by Janey laughing her head off, as I guess to her it certainly WAS funny) and "Elliott!  Come back over here right now!"  I couldn't resist, as we were walking out, saying to Janey in that tone that comes from who knows where "Is Elliott your BOYFRIEND?"  If I were writing a book of parenting advice, I would certainly say not to tease kids that way, but hey, I'm human.  Janey is the 3rd child out of three I've found myself teasing about the opposite sex.

One of the most wonderful things teachers can do is to tell parents of special needs kids about what their kids do during the day.  I've been pretty lucky that way.  One thing I'm very conscious of at school is not asking for special treatment.  I know in the mornings and afternoons, teachers are getting lots of kids in and out of classrooms, and I try hard not to take up their time then asking questions.  But I hope other parents, and teachers, do understand that what they tell me or what I tell them is often the ONLY way communication goes back and forth, unless it's something written down.  Just a few times, I've gone to school different years and found every other kid wearing some special thing for some special day, or I've found out after the fact that a party date had been changed and Janey hadn't brought what she should have brought for it, or that an afterschool activity had been cancelled.  This happens very rarely, but even the few times felt tough for me.  Probably not for Janey, but when you have a child with special needs, you especially want them to be wearing silly clothes if that is what the day features, or to have a treat to give out if everyone else does, or so on.  Sometimes, a child's special needs creates special needs for the parents, specifically, a special need for communication.  Janey's teachers have used email more over the last few years, and I love that.  It can be read when there is time on both sides, it's there to refer to again if you need to---it's great!

One of my biggest dreams for Janey---that one day she'll actually, directly, tell me something about her day.  She'll say "We had music today" or "I played with my friend at recess".  I would love that so much.  Until then, I'll live for the little scraps she is starting to throw my way!

Playing to Strengths

I went last night to hear a speaker at my younger son's school, Michael Thompson.  He has written quite a few books about child development and school issues.  His talk didn't tie in much to autism issues, but it was very well done and gave me some good insights into the boys.  However, one thing he said really struck me. He said something along of the lines of "No-one specializes as an adult in the area that they need childhood special assistance with"  He meant it mainly in relation to kids with learning disabilities, like dyslexia, but it seemed to me to be very relevant to autism education.  Very few kids with autism will ever have a career in an area requiring great interpersonal skills.  Janey probably isn't going to have any career, but in terms of what she will enjoy and have as a hobby as an adult, I doubt it's going to be in the areas she has the most difficulty with.  She still needs to learn in those areas.  It will be very helpful in her life if she knows how to greet people and to say goodbye to them, to write and recognize her name, to maybe even some day understand money just a little.  But she's not going to be doing greeting or writing as a hobby.  Thinking of higher functioning kids, there are many that have great areas of strength---perhaps math, or geography, or even something like knowing public transit maps by heart.  However, the way the education system is set up, we work far more on the areas that are tough for a kid than the areas that are easy or enjoyable for them.  I don't think this is avoidable at the elementary school level.  Janey and other kids do need to learn some basics.  But I'm thinking about what I'd like Janey's education to look like when she is in junior high or high school---how I can work on her strengths and not spend much time on areas that are not going to be a big part of her later life.

Right now, the biggest strength I think Janey has is in her love and appreciation of music.  Anyone who is around Janey for any amount of time knows that she responds to music like little else.  She memorizes songs, both melody and lyrics, very easily, and she remembers songs forever.  She is discriminatory in her tastes---she doesn't just like everything she hears.  She's very partial to bluegrass and country gospel music, and to certain songs within that genre.  This week, she's gotten into a song called "Uncle Pen" by Ricky Scaggs, and I have heard it in the car at least 30 times, because no matter what else I try to play, she asks for it again.  It's got a complex sound, and a strong beat, and she adores it.  I don't know if Janey would ever be able to learn to play music herself, but I want her to be able to access music easily, which with today's technology, is quite easy.  I want her to maybe learn the names of types of music, and to learn musical terms, and to just take her love of music as far as it will go.

I think we have long put a lot of store in this country in a well-rounded education.  Everyone learns a little of everything.  That model needs to be looked at.  Not everyone needs to learn everything.  I would guess that if we let kids, all kids, pursue their strengths more, we'd be better off as a nation.  The time spent teaching a kid who has no interest in or aptitude for math algebra is time that could be far better used letting that child pursue what they are good and love to do.  Or if the child adores algebra and is great at it, don't require them to spend large parts of their day engaged in learning something they will never master and will never enjoy.  I'm going to try to keep this lesson in mind when looking at Janey's education after she finishes elementary school.

Motivation and Drive, the autism way

After I wrote yesterday about my frustration with Janey's learning, I thought very hard about how she does learn.  It struck me that two major things make her learning different that typical kids.  One is motivation.  She has to be internally motivated.  She is not motivated in any way by pleasing others, or just be the thrill of accomplishment.  She is motivated by actually getting to do or see or hear things she enjoys.  She also does not have a drive to move on, to find the next big thing, to seek novelty.  She would never enjoy a role-playing game, as I do on occasion, where the big fun is getting to the next level and seeing what is there.  She lives in the moment when it comes to learning.

The right motivation can drive Janey to do very complicated things, things we'd never guess she'd be able to do.  For example, she loves to pick videos on Netflix.  She isn't quite able yet to get to the Netflix program on her own, but to be fair that's tricky for all of us---it involves changing a setting on the remote, pushing the right button on a row of buttons and making sure the Wii is on, and going to the right place on the Wii with a different remote...it's a wonder it ever gets done.  But once you get her to Netflix, she can do it all.  She finds the right list of videos (Recently watched or favorites) by scrolling up or down, then when she gets to the right list, she scrolls right or left to find the picture of the video she wants.  She clicks on it, then finds where it says "Play from Beginning" and clicks that.  If she gets tired of a video (as she often does), she can exit out and switch to another one.  This is all from a girl who sometimes acts like she barely knows her own name.

However, without motivation, she will not do the most basic things.  She can put on her socks and shoes and coat when she wants to go someplace, but when she doesn't, she'll look at us helplessly like she has absolutely no clue what we could be expecting.  You can't convince or prod or force her to put them on.  She simply sees no reason to do so.  Our disapproval is not a reason.

The other big factor in her learning is the lack of desire to move on.  I realized that when watching her this morning playing with the First in Math program on the computer.  She was very eager to play with it.  She woke up and asked for it very first thing.  We went to the shapes matching game, where you pick shapes from a cloud of floating around shapes to make three in a row that are the same.  She can easily get the right shapes when she feels like it, but I realized she really doesn't care about that.  She likes the floating shapes, the music, the whole bit.  She puts shapes in the wrong place and then just watches the program float around.  I would be driven to see what happens if I get enough right in a row---I'd want to see what came next, what kind of reward there was, how the next level got challenging.  I was so driven I almost jumped in and just played the darn game myself.  But Janey was happy with it the way it was.  It wasn't that she might not have liked the next level too---but that just didn't motivate her.  I don't usually get into the whole "We can learn a lot from our children with autism" bit.  I feel like autism is a disability, not just a difference.  But in this particular case, I might make an exception.  When I let myself relax and just look at the shapes floating around, I could also see her point.  It was relaxing.  It was something in itself to do, not just a step to the next part.

However, kids with autism do need to learn.  I think the key is designing learning programs that understand them.  They have to be highly, highly motivating.  Getting something right has to result in a big reward, like a song the child loves or a video clip or so on.  But the actual tasks, in contrast, might have be kind of boring.  If Janey is happy just watching shapes float, the task might need to be taken down in interest a notch.  She needs to do the task to get to the reward, and therefore actually have some motivation to get the answer right.  Even writing this, I'm fighting that way of thinking.  It goes against my grain.  Learning should be natural, should be enjoyable!  Kids learn best when they are having fun!  All those phrases are hitting me.  But autism changes the rules, for a lot of things.  Learning might be one of them.

The other frustration

Lately I've been experiencing what for me is a new kind of frustration with Janey---frustration with her intellectual disability.  I can honestly say until this point, I was not bothered by her retardation.  I still am not, nearly as much as I am with the autism and the resultant behaviors, but I'm starting to feel that frustration, just a little.

Mainly, it's just not getting how she learns, or how she doesn't learn.  A good example is an app she was trying to do on the iPad last night---Jumpstart Preschool.  It's a little beyond her, but she's interested in it.  There was a matching task---you click on kites or umbrellas or something, which reveal a capital letter, and you need to find two that match, like Concentration.  She seemed to somewhat get what it wanted her to do, but she couldn't seem to get that she needed to try new kites if the first two didn't work.  She sat there clicking the same two kites for about 15 minutes.  I didn't jump in to help---I was trying hard to not do so, to see if she'd get it.  I don't think this was a case of stimming with the sounds.  I think she really wanted to do the matches, as when I finally jumped in and did one for her, she was delighted.  But she didn't or couldn't make the mental jump that would have told her---you need to click around to find the right letters!  Today, we were trying a math program her school uses---First in Math.  They had kind of a trippy game, where a slot machine looking bar showed something like two blue stars.  Floating around below it were all kinds of shapes in different colors.  You had to put a blue star with the other two blue stars.  Janey did understand this, and a few times, did it perfectly.  But other times, she put a shape over the shapes that were already there (which I don't think the program should have let you do) and then, she seemed to be totally thrown off, and kept putting the right shape over the wrong shape in the area where she'd get no credit for it.  She would do the same thing about 10 times, without seeming to realize that she had just done it right a little earlier.

Both those cases show the frustrating part.  It wasn't that Janey didn't get what the task was asking, I don't think.  But she wasn't able to make the mental corrections and steps to get it right.  It might have been a matter of motivation, but I don't think so---in both cases, she liked a lot how the program reacted when she got it right.

It struck me watching this that I would never, ever be a good homeschooling teacher for Janey.  I've realized this with my boys (although they made it very clear that had no desire to be homeschooled!)  I get frustrated far too easily.  I don't know how to teach, especially how to teach Janey.  There is probably a method that would work better than ones I try, but I don't know what it is.  And I just start thinking "How can she not get it?" and I know that's mean.  She doesn't get things because her brain is not set up to get them.  I don't believe it's all hidden in there someplace.  I think her brain has severe functioning problems.  She is able to use the parts of her brain that aren't as affected---rote memory, for a big huge one, and music, and gross motor skills and even fine motor skills in terms of technology---it was not that she couldn't manipulate the mouse at all.  But she can't learn new patterns easily at all.

I can accept in myself that I get frustrated with the autism.  No-one on earth, I don't think, could hear Janey's hourlong screaming spells and not be upset.  But the learning delays---I feel like I should have more patience.  I feel horrible that I get frustrated with that.  I guess it's an area where I should instead feel very grateful to her teachers and therapists, who have the patience in that area I do not.  And I do feel that gratefulness, but I wish I had that gift, the gift of teaching.

Mythologizing Recovery

I've been continuing to read "Far From The Tree".  It's a very long book!  I've finished the chapter on autism, and I'm going to write more about it when I finish the whole book, but in that chapter, there was a quote that struck me very hard.  It was written by Cammie McGovern, the mother of an autistic child, in a New York Times op-ed piece (you can read the whole piece here) and it said "In mythologizing recovery, I fear we've set an impossibly high bar that's left the parents of a half-million autistic children feeling like failures."  That says a mouthful.  She says in the piece something I've thought---that you don't really meet these recovered kids outside of the books.  I am sure they exist, in a way.  In fact, I have one in my own family, in my son, in a way.  But I don't think he was ever autistic to start with, and if he was, I didn't "recover" him.  He recovered himself, or his brain recovered itself.

Do I feel like a failure because it doesn't appear Janey is going to "recover"?  Well, strangely, although I am prone to feeling guilty about everything (including the ducks going barefoot, to use a phrase I heard growing up), I don't feel guilty about that.  It is not my goal to have Janey recover, because I don't think it's possible.  And I am not going to use her whole childhood to try to do something that I don't feel in my heart is possible or is in her best interests.

I was thinking of an analogy.  Say you had a kid, a "typical" kid.  A great kid, but with a huge amount of trouble with math.  This kid just doesn't get math.  He is good at a lot of other things---let's say he writes poetry, he plays chess, he is a fast runner---he's a cool kid.  But he is no good at all at math.  And that just is not okay, with his family or school.  They decide to "recover" him, to fix his math problem.  And because anything worth doing is worth doing all out, they go all out.  They start a 40 hour a week math tutoring program, for starts.  They have him get rewards for doing math.  Before he can play chess or write his poetry or run, he has to do a math problem.  They work math into every part of life.  Now, this kid is never going to be a math whiz.  Not even the most optimistic people think that.  But the goal is that he be indistinguishable from any other kid with his math abilities.

One of two things can happen.  He can recover to the point that he functions as well as anyone at math.  It took him about 20 times the effort, and he doesn't like math, and he is not going to have a career in math, but he is okay at it.  Meanwhile, he's lost out on time he could have spent doing things he's really good at.  He's been hugely frustrated over and over.  He basically didn't have a childhood for years, recovering that math.  The other result---it doesn't work at all.  He doesn't learn math.  Maybe he can do a few math facts here and there, unpredictably.  But he will never, ever be in a regular math class.  The time teaching him basically has been wasted.

Now let's look at another way to handle his math problem.  We could say "well, math is not his thing.  It's quite helpful in life to know a little math, so we will work with him on that.  He will have math lessons now and then, but we are certainly not going to let it take up time he could be living his childhood.  We are going to emphasize what he's good at.  We will help him with math, but we realize that he won't be going to MIT.  He won't be taking calculus.  He might spend his whole life with a little trouble counting change"

Of course, the skills autism takes away are more life-changing than math, but the basic theme is the same.  I accept that Janey is autistic.  There are things she'll most likely never be good at.  But there are things she's very good at, and besides that all, she's a kid.  I could go all out "recovering" her, and maybe, maybe, she could get closer to "normal", although with her intellectual disability, that's not likely.  But she'd lose out on a lot.  Or it might not work at all, and I would feel like a failure.  Some people might say it was worth it, that I should have done 40 hours a week of ABA, a special diet, intensive floortime, high dose vitamins, a private school.  I say no.  I say I'll keep doing what I'm doing, and what her wonderful team of teachers and therapists are doing.  I'll work on the autism, but I'll leave time for music and running around outside and snuggling and laughing and a childhood.