"I am angry, Daddy"

A few nights ago, when Tony had just come home from work, Janey went over to him and spoke the words in the title---"I am angry, Daddy".  It's hard to describe, but I think many of you are familiar with what I'm talking about when I say those moments are sort of like miracles.  They make you feel like you are in a dream, or living another reality.  For Janey to just go over and say that, and not reverse the pronouns, and state clearly how she felt---well, it's something amazing.

When I think about it, it's also something we have worked hard on, and so has her school.  Both the school and we have worked for years on helping her identify emotions. But still...to have her suddenly say something like that, it always feels unexpected.

I used to read a lot of books about kids with autism, before I had such a child.  Call it premonition, or something.  Now I realize many of those books were selling a bill of goods, not intentionally, of course, but still, they often showed miracle type cures, or else cures that came about by parents so devoted that no-one in the real world could ever copy their methods.  And I know, now, that some kids do change radically.  I'm not saying they don't change as a result of help from those around them, but other kids can get that same help and change much less, if at all.  You aren't going to grow a sunflower from a marigold seed, even if both get the same care.  And getting a marigold is great, not bad, but if you write a book about how you grew a sunflower from a tiny seed and anyone can do that, even those with marigold seeds...you are not quite getting it.

In those books I read about autism, I would often hear of moments like the one where Janey said what she said, and I'd think "There!  They did it!  Problem solved!"  Those of us who have now lived the life now that's not how it works.  Doing something once doesn't mean it will happen again right way, if at all.  I don't expect Janey to suddenly clearly state every feeling she has.  But it's wonderful to know she CAN.

After Janey told Tony she was angry, he did one of the twisted sentences we often do.  He said "What Daddy can do to make Janey feel less angry is....", leaving the sentence open for her ending.  We do that to sort of pre-populate a sentence, so she can fill it in.  And she did.  She said "say 'Achoo, A Sneaker, A Sandal, God Bless You"  That might not sound like it makes a lot of sense, but it does.  Janey lately loves to have us pretend to sneeze, and then to say "God bless you" to us.  And Tony often pretends to sneeze by saying "a shoe, a sneaker, a sandal..."  So, we played that game for a while.

A few days before Janey's big statement, her brothers were here working on their financial aide forms, and Janey was very upset.  I took her aside to calm her down and did some guessing, saying "Janey is angry because Daddy is busy" (he was helping the boys).  Janey repeated but changed what I said, saying "Janey is angry because William is busy"  And indeed, when I let William know she needed some attention, she was much happier.  We are realizing that often what she seems angry about is when we aren't paying her enough attention.  I think we usually used to guess she was angry about more physical things, like feeling hungry or tired or in pain, and it's so wonderful to better understand what she needs from us.

We'll keep on working on feelings.  I want to thank you, Janey, for giving us that great sentence to let us know how you feel.  Whenever you are ready to tell us anything, we will be here to listen.

Gold in the Ocean

I've read there's lots of gold in seawater. It's there, but it would be very, very hard to separate it from the water.  Do we look at the sparkling ocean and think "Wow, it's so beautiful because of the valuable gold it contains?"  I don't think most people do.  They love the ocean for other reasons.  Lately, I've been thinking about this a lot as a metaphor for Janey's brain.  I think there are amazing things inside her brain.  I think she has ideas, music, opinions, sassy backtalk, arguments, words of love and all the other parts of a child's personality that they share with us when they talk.  But getting all that out?  Sometimes it's like getting gold out of ocean water.  To carry the metaphor further, I don't want Janey to be valued for what might be in her mind.  I want her to be valued for what she is right now.

But what if we could figure out a good method to get the gold out of the water, effectively and safely?  That would be great.  I'd go for it.  But say I tried and it didn't work.  Would I think devalue the seawater?  Would I think less of its beauty, and value, and usefulness?  I hope not.

I would dearly love Janey to be able to better communicate.  I dream of it.  I long for it.  But over the years, she has made very little progress in this way.   This was brought home to me today as  I prepared for an appointment we had this morning to start the process of Janey being followed by the autism team at a big hospital.  I was looking over reports and IEPs and notes from years back, and I was struck hard by how I think Janey talked more at 4, a year after her big regression, than she does now.  Her talking ebbs and flows, but it can in no way be seen as a graph going up.  She isn't talking more as she gets older.  I don't think if she ever will.  This is despite lots of speech therapy, great teaching, Tony and my and the boys efforts, ABA, an iPad, everything we can think of.  There's a good chance we will never, ever hear the great things I believe are in her mind.  They may stay locked in there forever, at times letting us have a little glimpse of the treasure, but for the most part, inaccessible.

I want the world to value Janey just as she is.  But the biggest battle I have is with myself.  I need to truly accept Janey as she is.  I'd like to think I do that, but sometimes, I go beyond just hope to pushing, to probably letting Janey know that I wish she would talk more.  For example, last night Freddy was quizzing me on things he'd learned in school.  For fun, he quizzed Janey too, asking her to tell him a number.  We didn't expect an answer, but she piped up "Like, four?"  I was thrilled, and praised her highly.  I then started asking her lots more things, I guess trying to strike while the iron was hot---asking her to tell me a letter, to point to her brother, to tell me a shape, to spell her name, to give me the names of the cats----none of which she answered.  And as I watched her face, it turned from happy to confused to blank.  She tuned out.  I am sure I showed that I was thrilled by that glimpse of the gold in the seawater.  Do I act as excited when she claps along to her favorite bluegrass music?  Do I praise her for dancing around, for smiling, for just being herself?  I need to.  I need to show her that she is valuable not just for her potential, for what she might be have locked away and lost the key for, but also for who she is, right now.