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.

Janey's Mysterious Mind

If I had one wish, I would put aside the regular wishes like a billion dollars or unlimited more wishes (well, maybe not that one!) and wish to be able to be inside Janey's mind for just one day.  If I could see how her mind really worked, what the set-up is in there, what she understands and what she doesn't, I think I could be a better parent to her.

I have a few examples from recent days of my glimpses into Janey's thinking and abilities.  They are interesting, but like blurred photos or an book with some pages missing, they give me only a hint of what is whirling up there in her mind.

One of the things I'd most like to see is how she arranges memories.  I have a feeling they are like YouTube clips, little stored segments that come up when the right keyword is entered in.  The other day, I put a Kermit the Frog top on Janey.  I said "Look at this shirt!  There's a picture of Kermit the...." waiting to see if she would finish the phrase.  She didn't at first, and I let it go, but a minute later, she said "Kermit the Frog!" Then she started reciting, word for word, a skit from Sesame Street, something on a video I'm quite sure she hasn't seen in years, as we lost it, where the Count gets a job as an elevator operator and Kermit gets on the elevator.  She knew all the lines, as she usually does.  I picture her brain getting the Kermit keyword and bringing up the clip, stored in complete form.  It's an interesting form of memory, but it doesn't allow for easy answering of questions.  She knows who Kermit is, but unless I'd known why she was talking about the Count, I wouldn't have gotten what she was saying.

Other times, Janey uses the clips to try to communicate.  This evening, she took a shower and I was drying her as she got out.  As it wasn't a washing hair shower (she just likes to take showers a lot, and sometimes I let her just take one to enjoy the warm water), her hair wasn't really wet, and I wasn't drying it.  That wasn't the usual routine, and Janey had the look of wanting to tell me something.  Suddenly, she said "Yeah, Sister!" and then started singing "I'm gonna wash that man right out of my hair!"  She likes that song, and she's seen the clip from South Pacific, where the star dries her hair with a towel.  She was telling me that I needed to dry her hair.  I pictured her doing something like a Google Image search, finding someone doing what she wanted doing, and then using her memory to try to give me that image.  It's complex and interesting, but it's not practical in a lot of situations.

Although long periods can go by without Janey showing her hand, I do think somewhere in her mind, in some conditions, she can read.  This morning, Tony put on The Pink Panther on YouTube for her when she asked for it.  We've often noticed that when we aren't looking, suddenly the computer is on something totally different than what we put it on.  We assume usually she is clicking on the little suggested videos that come up next to the video she is watching, but sometimes, that seems unlikely.  Today, I was watching her when she didn't realize I was, and I saw something surprising.  She closed YouTube, then reopened the browser and went to the bookmarks (she could have done this right from YouTube, but she is very tidy on the internet and often just goes around the house closing computer windows)  The list of bookmarks was quite long, and she scrolled down it and found what I believe she was looking for, Weird Al's "White and Nerdy"  She clicked on it and happily watched it, then was able to click on some other Weird Al stuff that came up on the sides.  I don't know how she could tell that particular bookmark was what it was without reading it.  When she saw I was watching her, she gave me a look that was a little sheepish.  I said "You can read, can't you?"  Of course, no answer.

I was thinking this all through today, and feeling a little frustrated.  Why can't Janey put her amazing memory and her hidden abilities to use?  Then it occurred to me---she does.  She doesn't do so in the way we might want, but she does.  She enjoyed remembering the Kermit video, she managed to tell me what she wanted me to do with her hair, she got to watch the Weird Al video she wanted.  When I push for more, the times I have, she either simply acts like she doesn't know what I am talking about or she gets actively upset.  So---do I accept she's doing what she wants to do?  Or do I call her bluff and try to make her use her abilities to be more like the rest of us?  I don't know the answer to that.

In The Driver's Seat (Guest post by Janey's daddy!)

For the first time ever, my husband Tony wrote a guest post!  It's written as a letter to Janey, to show appreciation of the changes that have allowed us to travel a bit more lately.

Thank you, Janey!

For the past four months, Janey, you have allowed me to be in the driver's seat of Daddy's car. Almost every day, I take you on at least one car ride, because you want me to play music for you in my car's disc player. This is something you have wanted me to do since you came home from the hospital, after you were very, very sick from your appendix bursting.

You like these car rides with our music that I play for you so much that you seem to also enjoy your bus rides to school in the morning and the afternoon bus rides when you come home from school.  A lot of times you run happily onto the bus in the morning, and Mama tells me that you run off the bus all happy in the afternoon and bolt right into the house.

Daddy's car rides with our music seem to make you so happy, even after you have been very angry or sad, that your brother William said to me, after he came along with us once, "wow, it's like giving Janey medicine." 

Most times our drives together are about an hour long, but sometimes, you and Daddy like the music so much that we drive for two or three or more hours. You hear some songs, like Santana's "Soul Sacrifice" from Woodstock in 1969, or The Ventures' "Wipe Out" from Tokyo in 1966, and you soon look like a humming bird as you drum your arms so fast out of happiness that they become a blur!  Sometimes Daddy and Mama think that our old car is breaking but it's really just you dancing and rocking so fast in the back seat!

And when we drove far away to take Freddy to his new school in New York, and to Maine to see Nana, Grandpa, and Aunt Sarah, you were so nice and happy in the car with our music playing, even when we were stuck for a long time in silly Massachusetts' traffic! And you were so good and happy in the hotel houses we stayed in.

And Janey, you put a big smile on Daddy's face whenever you come up to me now and say the first words of a song you want to hear on the next car ride, like, "You want to hear "generals gathered in their masses"?" That song is called "War Pigs" by Black Sabbath, which you like because your brother William has played it on his guitar and sang for many years in his room.

Mama has made you many music discs and put songs on your iPod since you were a little girl that we now play in the car, like "Angels We Have Heard on High" and Johnny Cash's funny song "In the Jailhouse now." And Janey, when you want to hear "Folsom Prison Blues" and you make your voice sound lower and say "hi, I'm Johnny Cash," you do that so well! We play songs "Beat It" and "Bad" from the disc Freddy gave to you for Christmas.  And you laugh a lot when daddy plays Weird Al's "Eat It" and "Fat." Daddy laughed so loudly when you said to me "you ain't fat, you ain't nothing!"

Janey, I hope we don't get too much snow this winter, because I still like to drive you around!

Again, thank you, Janey!

Life Isn't Fair...and other negative thoughts

I will start with a confession.  Almost every day, I dread Janey getting home from school.  It's not that I don't want to see her, but the roughly two and a half hours between when she gets home and when Tony gets home are an extremely tough time.

I try, very hard, to figure out ways to make this time better.  I've written about that before, quite a few times.  I think hard about what to do to improve the time.  Lately I've been giving her a verbal schedule as soon as she gets home "First a snack, then play toys, then read books, then watch a video, then Daddy home"  Janey is really only interested in two of these things---the snack and Daddy getting home---but I try hard with the other things.  When the weather allows it at all, we spend time outside.  This spring, I plan to add a nice long walk to the daily routine.

Today, it all went downhill quickly.  We had the snack---lots of leftover Chinese food.  We played toys.  I had gotten Janey some new-to-her My Little Ponies at the thrift store, and we played with those for fifteen minutes or so.  (Actually, I played with them and she watched---that is how most of our playing goes)  I read her a book about Little Ponies, and she sort of listened.  Then we put on a video.  She has enjoyed some Weird Al videos lately.  She did today too, until one came on that bored her.  I tried to find something else she'd like.  I took a chance on "Dancing Queen" by Abba, which she seemed to like at first.  But then she stopped liking it.

I knew she'd stopped liking it when she kicked me, hard.  As I got up and started to lead her to time out, she reached over quickly and smashed my nose, hard enough that it hurt very much.  I cleared away quickly enough so she wasn't able to bite me, as she was trying to do.  I shouted for her to get on the bed.  I try to stay calm, but I wasn't feeling calm, and yes, I yelled.  She got on the bed, in a fury.  She tried to get up immediately, and I told her to stay where she was.  She lunged at me.  I walked away.  She got up.  I stopped trying to get her to stay on the bed.  I didn't want to be bitten or hit again.  She asked for strawberry milk.  I said no, not right then, not the way she'd been acting.  She decided to fix it herself.  As I ran over, she spilled the whole canister of powder on the floor and grabbed a glass of water and poured it over the pile of powder.

At this point, my mind just kept saying one thing, a not very useful thing.  I was thinking "This isn't fair"  I haven't really thought that in that particular way before.  I've had, of course, a few moments of thinking that other people do have it easier, but I very much believe that oft-repeated phrase "Life isn't fair"  What I was feeling right then wasn't that, though.  It was feeling that the relationship between Janey and me isn't fair.  I try, I try so very hard.  And she seems to try not at all.  I always struggle to be positive, to make her life better, and I was feeling right then---she never tries to make my life better.

Of course, I realize that isn't fair to think.  Janey is not capable of seeing things from my perspective.  She isn't purposely trying to make my life hard.  I am sure she doesn't want to be the way she often is, angry and destructive.   But damn it, it gets hard sometimes to be her parent.  It gets hard to see the silver lining.

Lately I have very little energy.  I am not sure why.  I am tired all the time.  Some of this might be depression, or hopelessness, but a lot of it is probably physical.  It's been a few years since my thyroid dose was adjusted up, and I recognize a lot of the tiredness as how my body feels when my thyroid replacement is not enough to work.  Or it could be one of the two or three other autoimmune waiting in the wings, the ones blood tests show I have although my body doesn't yet show all the signs.  The tiredness, whatever the cause, isn't helping matters.

Still, things are better in a few ways, I realize even on my worst days.  Janey is crying less and sleeping better.  She is calmer overall, for sure, than she was during the dark days in November.

It's when I write entries like this that I hope all of you who have told me that even the discouraging posts I write can be helpful are telling the truth.  I don't like to be downbeat.  It's something people point out to me a lot, how I will complain a bit, but then add in something positive to the conversation, even when it's not really warranted.  I'm trying to work on that---on feeling like I have to be upbeat when I'm not.  So---no cheerful ending, although I'm fighting the urge to include one pretty severely...