If I could ask you, Janey...

What if somehow, I could ask Janey all the things I wonder about her, and she could answer me, answer me clearly and fully?  I have a store of questions a hundred pages long.  Here's a few of them.

Do you like school?   I hear from your teachers if you had a good or bad day, what activities you had, some of what you learn.  But no-one but you can really tell me if you are happy at school, or tell me how you feel about the types of things your brothers told me---what kid in the class annoys you, what lunch is like and who you sat with, a funny thing that happened in class, a moment you felt scared there about something.  I don't have any idea what school really feels like for you.

What makes you like certain movies and TV shows so much?  I certainly know what you like to watch, but I often wonder---why those particular videos or shows?  Why do you watch "The Goofy Movie", with the story of father son bonding and a road trip, over and over?  Why is your favorite Disney movie "Hercules", a movie most people think is one of their weakest offerings?  What is it about that certain episode of Little Bear where Uncle Rusty babysits that makes you want to see it over and over, and makes you scream if I try to put on a new episode?  I would love so much to know what you like about the shows that you like.

When your appendix burst, how did it feel?  How could we have not known how much pain you must have been in?  That one haunts me.  We think Janey's appendix had been ruptured for three days before it was removed.  The pain must have been incredible.  We knew she was sick, enough that we took her twice to the emergency room, but neither us nor the medical professionals at one of the best hospitals in the world knew how serious it was, not until a CAT scan was done.  How could that be?  Do you feel pain differently?  Did you think we did know somehow and just weren't doing anything?

Do you understand at all why people come and go?  You miss Daddy so much every day while he is at work.  Do you have any notion what "work" is, why he has to sometimes leave for the day?  We say your brothers are at college, and you have seen their rooms, but do you get at all why part of the year, they go to live someplace else?  You ask for Auntie Carrie, for Nana and Grandpa, for Auntie Rose.  Do you get that they have their own houses, some of them very far from us?

Why do you scream?  I know there might be all kinds of answers to that one, but what most upsets you?  Why can you be happily watching a movie and suddenly, you scream, like you are in horrible pain?  Are you?  Is it when you don't understand something?  How can we help?

Why do you say "duck" between thoughts?  This is one I wonder about a great deal, although it's not as big an issue as some of the others.  You use the word "duck" like a divider, like a period or a dash, or a repeat sign.  You'll say something like "I know what you mean, but it's just not funny!  DUCK.  I know what you mean, but it's just not funny!  DUCK  You stole my pencil!  DUCK  I can write your name better than you can!"  All quotes from one of your favorite episodes of The Simpsons, but why the Duck in-between parts?  What does it mean?  How did it get started?

What could I do to make your life happier?  That is what I want to know the most, Janey.  I wish you could tell me all the little things and big things that would make you happy.  What could I get for you?  Where do you want to go?  What are your dreams?  Do you have dreams?  I guess at these things; I try as hard as I can to make your life as meaningful as I can.  But the truth is, there is so much about you I just don't know.  I love you so intensely, Janey, but I often feel like I have failed you.  Without the ability to communicate verbally at more than a basic level, without another form of communication, I am so often left guessing.  I can read about people with autism that have learned to communicate, and I can get some ideas, but they are not you, Janey.  You are, like every person with autism, like every person in the world,  a unique, fascinating, complex person, and in so many ways, Janey, I don't know you.

Small Triumphs

I won't lie---the last week has been a tough one.  Janey has been crying a great deal, and has starting with the biting of her arm again, and added a new fun one in---scratching herself badly.  I cut her nails short, and at summertime school, they are keeping a jacket on her all the time for the arm biting (they have AC) but the crying---it's tough.  We really don't know what's up.  It's probably just one of those swings Janey has at times---a bad few weeks, a good few weeks, a great few weeks, a hellish few weeks---and we are never sure why.

But today, there were a few small triumphs, in the middle of a day of screaming and crying.

The first was a good library trip.  Last time at the library, which I wrote about, Janey had a fit.  Today, after picking her up at school, I told her right away we were going to the library, but I was going to just get books at the desk this time, no walking into the stacks.  I also told her if she could be a good girl in the library, we'd get a treat at the CVS, whatever she wanted (the CVS is next to the library).  Janey cried most of the way to the library, so I wasn't hopeful.  But once we got in there, she truly held it together and didn't cry at all, and stayed with me and was perfect.  So off to the CVS we went.  I was thinking that one nice thing about Janey vs. "normal" 8 year olds is that I CAN tell her she can get whatever she wants at the store, because she won't decide that what she wants is all the toys, or a hugely expensive odd thing like an "as seen on TV" wonder knife or something.  She walked right in to the store to the area where the chips are, and for the first time I remember, didn't immediately grab the thing she wanted.  She stood and looked at all the chips for quite a while, and then picked a bag of sour cream and onion ones.  I felt like she really understood the whole deal---the behaving at the library, the treat and even the picking out of the treat.  It felt nice.

When we got home, I had some packing of books I'd sold that I very much needed to do.  I put on The Goofy Movie for Janey, her current favorite, but after watching it a bit, I turned to see she was out of sight.  I was in the middle of taping something, and actually finished the taping---a risky 20 seconds or so---and then went to find Janey.  I found her in the bathroom, and I started looking right away for her usual mischief---toilet paper all over, toothpaste squeezed out, her trying to take a bath with clothes on---but inside, she saw she was wiping herself, after very, very successfully using the big girl potty for what sometimes becomes a huge mess.  I was thrilled.  She has never used the big potty for that on her own before---we've caught her about to go a few times and taken her there, but this was all her.  She got a big high five (after hand washing).

Even though most every moment not described here consisted of crying, I decided to take a risk and go to the post office with her, as I had things that very much needed mailing.  I told her that if she could be good at the post office, we'd get a doughnut.  That was probably too much for today.  She cried most of the time at the post office, even though it was very quick there and the clerk knows her well and was very sweet to her.  When we got out, she looked at me with tears in her eyes and said "David Donald Do?  Dreamed a dozen donuts and a duck dog too?"  which is a quote from Dr. Seuss's ABCs.  I got her the doughnut, mostly for understanding what she was supposed to be doing and what the reward was, which is a step forward.

I have been trying, in one of my many tries at a new way of thinking or a new strategy, to see the crying as just a background thing---not something that has to be fixed or dealt with right away.  A few times today, I told Janey to try hard to calm down, and then walked away to give her a minute or two to do so.  That goes against so much of what is my instinct, but it seemed like she was trying.  I praised her a lot for even a minute of non-crying.

Maybe I'm able to see the good in today because it's the weekend, Tony is home for a few days to help, and Janey is going to the respite house for 6 hours tomorrow.  I'm going to keep trying to pick out the good from even the tougher days.