Every so often it's time to cry again

Maya arrived home the other day with one thing on her mind: the school bus.  She was saying “school bus” with her talker, she pointed to the picture of the bus that hangs in the alphabet hallway (with the letter B), she told me “buh!” several times, and she kept demanding that we sing “wheels on the bus.”  Her method of demanding was very cute--she made sure that she had our attention and then rolled her arms round-and-round, just like in the song.  We sang, she acted it out, the song ended, she was delighted and wanted more.  Good times.

But I didn’t know why she was so suddenly enamored with wheels-on-the-bus, and it nagged at me.  Was she excited to be traveling on the school bus again after her week off?  Were they reading about a bus at school?  Does someone else sing her that song?

It was obvious from the way that she lit up when we started to sing that she was making some connection, and she couldn’t tell me what is was.  So after she went to sleep I emailed her teacher, Laura.  First, I let her know that Maya was newly obsessed with wheels-on-the-bus, and that spinning her arms translates as “let’s sing WOTB!”  Then I asked if they had done anything with that song at school.

I got the reply the next morning (I’m paraphrasing): That’s too funny!  Actually, I sang it to her yesterday at school, and then we all sang it later as a class!

I smiled reading it, understanding how much Maya must have enjoyed acting out the song with her friends, and how excited she was to keep doing it at home with us.   Then I started to cry.

God, how I hate that she can’t talk.

I hate that in order to figure out that they sang wheels-on-the-bus we had to go through a crazy multi-step guessing game: Maya acts out round-and-round, I guess that’s she saying wheels-on-the-bus and start to sing.  She lights up, so I know that I’m right. I sing and she does the motions and she is more delighted than usual, so I take her excitement as a clue that something more is going on.  I email the (luckily cooperative) teacher, who doesn’t mind my guessing games, and wait to hear back to gather more clues.  Finally, I find out that she sang it at school, and now I wait for the rest of the day to go by so that when I see her again I can say, “Maya, I talked to Laura!  She told me that you sing wheels-on-the-bus at school!”  Mystery solved!  High fives all around!  24 hours from start to finish.

Or . . .if she could talk . . . she could say “Wheels on the bus!” and we could sing together and I could say “Did someone sing that today at school?” and she could say “Laura sings wheels on the bus!” and then we could have a snack.  4 minutes, maybe, from start to finish.

I hate that I might be missing other hints that she tries to give me, other things that she wants to share.   I speak for her constantly, making connections and guessing.  When she enthusiastically points out a whale in a book, I say “Oh,  a whale!  That’s like the big whale that we saw at the museum!” . . . but what if she’s pointing at the whale because it’s blue? Or because a boy in her class wore a shirt with a whale on it today?  Or because they’re studying the letter W at school and read a whale book earlier this week?  How can I keep talking for her, when I’m really just taking my best shot at guessing what she’s trying to say?

I hate that it’s so hard for her.  And for us.  And while I love her easy (well, mostly easy) personality and I’m eternally grateful that she doesn’t seem to sense the unfairness of her situation yet, I’m so angry on her behalf.  I resist the urge to get down on my knee and look her in the eyes and say “this isn’t fair to you, you know.  Other kids have it so easy and you have to work so hard and even then sometimes I just don’t understand and it’s not your fault and I can’t do anything to help and I’m sorry.”  I try to be happy that she (mostly) doesn’t care yet because I know that someday she will and that will be another crushing thing.

I hate that for us to communicate there is a multi-modal full body exchange that needs to happen.  I hate that I have to guess.  I hate that I’m probably wrong a fair number of times and I don’t know it.  I hate when she gets angry and cries/whines/yells at us (which happens at least once a day) because we don’t understand and she doesn’t know how to make us understand.   I hate that here I am again, three years into all of this stuff, writing with a crumpled pile of used tissues on the floor next to me. 

Every so often it's time to cry again.

At least now I have three years’ worth of experience behind me . . . enough to know what happens next.  I’ve sang this song before, many times now.  I will cry angry tears and then they will change to sad tears and then I will be numb.  And when the numbness fades I’ll take the energy that’s beneath it and, with new gusto, throw myself into working on communication stuff.  Oral motor exercises and making Maya request things with sounds and working more and more closely with the talker and Speak for Yourself so that it will continue to become increasingly incorporated into the way she initiates communication.  We have a lot of tools and a lot of knowledge and have to keep doing the hard work of making it stick.  There will be productivity and progress until I reach a new breaking point, and then we will start again. 



Postscript: I finished writing this at 2:55pm. At 3:15 Maya came home and we got the mail, and a prototype keyguard for the Speak for Yourself app arrived, which is fantastic and will definitely help with Maya’s communication accuracy via the talker.  At 4:10 I became sure (after a few days of debating) that I’m starting to feel the baby kick.  So, I guess sometimes you get lucky and the time to cry passes more quickly than you would expect.