Looking back on the decade

The end of a year, and in this case, the end of a decade, always prompts us to look back.  I've been doing that a great deal lately.

If I look at 10 years ago now, when Janey was 5, we were heading into some very tough years, years in which Janey was very unhappy and often very angry.  It's hard thinking about those years.  I wish I had known then that things would get as much better as they have.  Janey still is sometimes sad, sometimes angry, of course.  We all are.  But so much more of the time, she is happy, or at least contented.

In thinking about this, I've been thinking about causes.  What made those years so hard for Janey?

One of my leading theories is that during the worst years, the most attempts were being made to teach Janey academically.  Via ABA and classroom work and also at home by me, she was spending lots of her time working on things like letters, numbers, writing and reading.

These efforts were not successful.  At times, Janey seemed to learn a little, to know a few letters or numbers.  At one point around 2nd grade, she could write her name.  But these skills would fade away quickly if not constantly practiced, and sometimes, even when they were constantly practiced.

For a lot of kids with autism, this isn't the case.  I have seen myself the amazing things many kids in classes with Janey have learned.  And of course, we didn't know in advance that Janey wasn't going to be one of the academic achievers.  But I think it could have been predicted a bit more than it was.  I think of how extremely frustrating it must have been for Janey to have to work so much on things that simply were not something she could or wanted to learn.  When I think about that, it's no wonder she acted out so much.

How could it have been predicted?  Maybe by an IQ test.  And I will stop right here, right now, and say I know that IQ is not the only way to measure intelligence. In many ways, Janey is very, very smart.  But IQ tests do measure a specific kind of skill.  It can be said that Janey couldn't be tested accurately, but that in itself is telling.

Janey's IQ was tested at least three times, mostly through studies she was in. I was never given a number.  I guess people thought it would upset me, or that it was meaningless.  But I know she scored lower than the 1st percentile.  I know her IQ is very, very low.  Again, and importantly, NOT her intelligence, but her IQ---a specific kind of skill set.

From my understanding, IQ tests were first developed to understand potential, to see what kind of teaching and classes would be helpful.  I think we could have known early on,based on tests that were done, that what Janey needed was not academic work, but work on her life skills, and most especially work on helping her enjoy the things she IS good at.  I understand in a lot of ways why schools do keep trying to teach Janey and others like her academic skills.  A lot of it is No Child Left Behind type thinking.  But a big part of the reason is hard to put into words.  Trying to, and being blunt, it's that our society places a low value on people with low IQs, people whose strengths are not at all academic.  We try very, very hard to turn people like Janey into someone we feel has more value.

And Janey suffered because of this.  It was not just the school, but also us, at home.  We tried to teach her many things that were beyond her.  We tried to get her to talk more than she was able to talk, to be more perfectly able to use the bathroom than she was able to, to understand rules and rituals that were beyond her.

In our case, it was a dramatic event which changed things---when we almost lost Janey to a burst appendix.  It's the big dividing line in our heads, when we realized how truly precious Janey was to us exactly how she is, when we stopped putting value on what we HOPED she would do and started putting value on what she CAN do, on who she is.

For every child with autism, for every child without autism, for every child at all, there is a different path.  Until our society values people like Janey, we probably will keep trying to put all children on the same path.

What will the next decade hold for Janey?  I hope it holds happiness.  I hope Janey is content with her life.  I hope that for all of you, and all your children.

Happy New Year.

Autism Ten Years In

Janey, age 13---Ten Years In

Last month, the tenth anniversary of Janey's diagnosis with autism passed unnoticed.  I realized it a few days ago, and I had a thought.  What if, on that December day in 2007, I'd been able to have a glimpse forward to now?  What would I have thought?

I will be honest and say I might have been quite discouraged in some ways.  Janey talks now probably less than she did at the time she was diagnosed, and far less than she did when she was two, before her big regression.  Her academic growth has been very, very slow.  She doesn't read, or write, or add or subtract or reliably do things like identify shapes or colors.  She is not fully toilet trained.  She still needs a huge amount of help with self-care.  In short, if you look at measures like standard IQ testing or academic achievement or potential to live an independent life, she is not one of autism's success stories.  That would be a hard thing to have known in advance.

However, in some ways, I think I would have been quite encouraged.  My glimpse forward might have landed on any of quite a number of happy times just this past weekend.  Maybe I'd have seen us all watching Weird Al videos, together on the couch, laughing our heads off.  Maybe it would have been the big Thai take-out feast we had as a pre-back to college treat with Freddy, Janey joining in with huge smiles and her usually adventurous appetite.  Or I might have just seen one of the many times Janey's engaging manner and enthusiasm for life improved our days.

While talking to my friend Michelle about these thoughts, we touched on what I think many out there have realized.  There are different kinds of autism.  I truly don't think it would have made a huge difference what we did in terms of Janey's speech and academic development.  I see other kids that are in the same program as her, kids who started at a baseline like hers or in some cases, far lower, and who now read with ease and speak in a way very close to typical.  However, Janey has something that I don't think all kids starting where she does develop.  It's hard to put my finger on.  It's not really social skills, or ability to engage with others, but it's a personality that in some ways is very unlike the stereotypical vision people have of autism.  In that way, she has progressed.  I would hope if I were able to glimpse forward, I'd have seen that---the spark, the joy, the humor.

When Janey was first diagnosed, fear and hope battled in my mind.  I had hope that she would regain all her speech, that she would somehow progress to the point she left autism behind.  I had fear that life for her would be a joyless life, that she would never be happy---and because it's very true that a mother is only as happy as her saddest child, I would never be happy either.  Now, ten years later, it is fair to say I have far less hope about Janey's potential for typical progress.  However, the fear is also much less.  The Janey that exists today is not defined by what she can't do.  Of course I fear for her future, often, but I also delight in her joys.  In many ways, I have changed more in the ten years than Janey has.  Even if I had been able to look forward, I would not have looked at Janey with the same eyes I do now---eyes that see her for who she is, a valuable, special, frustratingly but steadfastly complex and unique. 

Here's to the next ten years.

At the Autism Whatever time of year, challenges, hopes, dreams and love

Over the years, writing this blog, my goals have been a few things.  One is to be honest---to write about how I really feel and how my life with Janey really is---to try my hardest to stay clear of any particular philosophy or approach that will limit how I feel I can express myself.  Another is to be respectful of Janey, to do my level best to represent her in a way she would want to be represent herself, if she were able to write.  And third, to give support and encouragement to others---to let them know that it's possible for things to get better even when they seem impossibly hard, to give them a virtual hand to hold when times are tough and to celebrate along with them when our girls surprise and delight us with their triumphs.

It's that time of year again---the time that goes by various names---Autism Awareness or Acceptance or no name at all because it shouldn't be a day, it should be all the time, or whatever.  It always makes me think I should write some kind of summing up post, some kind of meaningful conclusion post.  I had some things in mind, but today turned out to be a tough day.  Janey is not happy.  There's a lot of screaming, a lot of crying.  I am feeling discouraged, and that always makes it hard to stay positive...it makes it feel very fake to stay positive and upbeat, at least in the short run.

Where are we today? Overall, in a fairly good place, despite today's mood.  We had Janey's three year re-evaluation IEP meeting on Wednesday, and it was a good one.  She is making progress in ways she hadn't been for a long time---with talking, with learning skills, with expressing her needs.  Tony and I were very happy, as we almost always are, with the level of caring and understanding those working with Janey showed.  It's an example of this that one area she'd regressed a little in was "attention seeking", and her teacher remarked that is probably because she is almost always getting attention without having to seek it---that she knows more people in the school than most the teachers, and they all want to interact with her---that she draws people in.  That made me very happy, and it's something Janey really does do.  She's got an engaging personality, and we are seeing more and more of who she is as she gets older.

The biggest challenge I see for the next three years, if we look at Janey's life in three year blocks, is providing her with an interesting life.  At one point today, while crying, Janey said "I'm so bored!"  We've never heard that before, and I think it was a quote, but as so many of her quotes, it was used in context.  I asked her "Do you wish it was a school day?" and she said "WISH IT WAS A SCHOOL DAY!" very firmly.  Sometimes it can make me cry to think how limited Janey's life is.  She is nearing thirteen.  When I was thirteen, I started high school.  I had friends and crushes and homework and activities and hobbies.  I worked, babysitting and helping in my mother's store.  I wrote letters and diaries and read hundreds of books.  I walked for hours on the shore.  What does Janey do?  She goes to school and she comes home.  She watches videos.  She eats.  I need to expand her life.  We need to find activities for her, not busywork but activities she will really enjoy and be able to participate in.

Longer term, we need to start thinking about what Janey's life will look like as she becomes an adult.  How do you plan a life for someone like Janey?  At the IEP meeting, it was mentioned that sorting things was good training for sheltered workshop type work.  I have to say---that's not a goal of mine.  If you measure Janey's intelligence with any standard method, I know it would look like it should be a goal, even probably a rather ambitious goal.  But I don't think you can measure Janey with standard measuring tools.

I used to believe that people who said things like "There are many kinds of intelligence" and "IQ is just a meaningless number" were, well, I don't know...not correct.  But my thinking on that has changed radically.  Janey is very, very smart, in ways those tests can't measure.  She is smart in her own ways.  I can honestly say she has intelligence that can't be measured with tests.  She shows it with the song connections she makes, with the quotes that perfectly match situations, with her sense of humor, with her dancing and organizing and sophisticated palate.  I don't look at her, ever, and see a person with limited intelligence.

So---what do I hope for Janey?  I hope she has joy.  I hope she finds a way to pursue her interests and use her talents.  I hope she is able to find the care that she needs for the areas that she needs help with.  I hope she is always surrounded by people who love her and find her interesting.  I hope that she can rid herself of some of her demons, of whatever it is that makes her so unhappy often.  I hope she never encounters cruelty.

And what do I hope for myself?  I am realizing that's fair to ask, also.  I hope I can balance Janey's needs with my own.  I hope I value myself enough to do what I need to do to be healthy, for Janey and for myself.  I hope I am able to pursue my own interests and dreams without that hurting Janey.  I hope for a balanced life, one where of course my most important role is mother---to Janey and her brothers, but that I also am able to enjoy my own passions---that I can garden and read and travel and laugh with friends and have a life that is happy without that taking away from Janey's happiness.

I don't know what to call this time of year.  But whatever you choose to call it, I wish those with lives touched by autism happiness and love.