Monday, September 6, 2010

Hold the Cheese

This photograph of my son Jacob on summer vacation is the first lovely, natural photo of him smiling that has been taken in some time. I treasure it, and it will surely grace my computer screen and wallet for some time to come.  

For you see, Jacob is on the autism spectrum, and his interpretation of what to do when a camera is pointed at him, like so much about him, is aimed at, but quite clearly missing the mark for normal, like this:

He tries too hard. Waaaay too hard. So he ends up with a strange wide eyed or squinty grimace, yelling "Cheeeese!" at the top of his lungs, to boot. 

Jake used to have a warm, natural smile,

 then he started getting spacey in photos, 

and now this,

the balls-to-the-walls all out attempt at normalcy that looks like lunacy in it's current manifestation.  And I am glad I know (on most days, when I am having perspective) that's what this is, just the current station stop on the long haul from here to there. 

Right now Jake is so much better nearly every day in every way, and I feel awful, an ungrateful wretch for complaining about him. I feel guilty, very guilty at not feeling grateful every minute of every day for what a gift Jacob is, and how far he has come. But on that path from here to there, where Jacob is right NOW makes him so much harder to be around than back in the bad old days, when he was spacey and happy to live in his own little world.  

Because right now, Jacob, unlike so many other of his autistic brethren wants to interact ALL THE TIME. But he is still so inept at it, is still deep into the steep uphill climb on his learning curve, that an hour with Jake is more work than an hour at the gym, with the volume turned up to eleven. Because to have a meaningful conversation with Jake, you still have to carry 90% of the load. 

Jacob’s thoughts and intentions, his imagination and his humor are so much more sophisticated, so ahead of his language capabilities, there is constant correcting and interpreting to do. And then there is the answering over and over and over again of the thousand questions.

Remember three year-olds? That's Jake right now.  But he's a 75 pound, 4 foot 6 inch three year-old who will reach up to your face and try to make your mouth talk to him if you dare try ignoring him for a moment. And Ethan, Jacob's twin brother?  Really hates and resents having a three year-old for a twin.

There are parents with non-verbal kids who would give their right arms to have the problems we are having right now, I know that.  Believe me, I know that and try to remind myself of it every day when he is truly driving me around the bend. 

Because this year, due to the vagaries of the calendar and NYS in its infinite wisdom interpreting a 12 month program to equal a mere 6 weeks of summer school, Jacob has had a month, a full month of no school, no camp, no schedule, all-mom-all-the-time.  For a month, August 13th to September 13th, he has been, is, will continue to be mine, all mine.  And Jacob?  Right now?  WILL. NOT. SHUT. UP.  Really.

And that old mainstay of lazy parenting, television?  No go, there. Watching TV is not a quiet, passive activity for Jake, it is an invitation to engage in non-stop commentary and inquiry about what he sees on the screen: 

"Is that a baby?… it's a baby!.. What's his name?... What's the baby doing, Mommy?... is he sleeping?... the baby is sleeping...  SNOOOOORE (loud snorting snoring sounds here)... the baby is sleeping, mommy, he's sleeping... (laughing hysterically now)… WAKE UP, BABY!" (shouted loud enough to wake the upstairs neighbors probably sleeping-no-longer baby.)

I love my son, love him to pieces.  He is full of joy and light and love. He is the happiest autistic person I know.  He will skip down the sidewalk, because really, why walk when you can skip?  He slips his hand into mine, gazes into my eyes and kisses me ten times in a row, just because he can. He melts my heart on an hourly basis. 

But he also asks me every five minutes, all day long, every day, if we can ride the subway train to McDonalds and ToysRUs today.  Because we did it once, at the start of break, and he so loves Times Square.

Like a toddler, he doesn't know how to take no for an answer.  Actually, Jake doesn't even know how to take yes for an answer, so impatient is he in his anticipations that he will keep asking if he can do something I have agreed to, until he is in the middle of doing it. And then three minutes after it is over, he will ask to do it again.

He will grow, he will learn, he will be able to hold a thought in his head without giving it (loud) voice.  But right now this is where we are, neither here nor there, visiting station after station on our ride together.   

Next week Jacob will go back to school.  Next week my home will be much quieter, cleaner, and I will be able to get things done. Next week I will miss him all day long.  Because, you know, I do love cheese.



  1. Nice post.
    Learning to smile naturally on command is not easy for many of us, even in other parts of the autism ballpark

  2. Wow. You've painted quite a picture there - I can see how next week will be a blessing alongside that missing.

  3. I love that first picture, it really it gorgeous and I can see why you are so proud of it and him :) My aspie boy now also pulls a lot of silly faces or ducks out of photos altogether, so I have very few these days....

  4. I can relate to so much of this. My daughter does the same thing in many pictures. We try, as you did, just to snap one when she is happy anyway. I fear for a dear friend who asked her to be the flower girl at her wedding. I warned her about the pictures...I was both glad school was starting and worried about it since we're at a new school this year. So far so good. We have some other friends with a non-verbal 15 yo is a constant reminder of our own happy, if uphill, path.

  5. I am here because your comments on my blog have made me love you. A little bit. Ahem.

    But I am not equipped to comment intelligently on this post. Your son is gorgeous, and in that first photo? Simply radiant.

    As I am sure he is radiant in the other photos as well. Photos don't tell the whole story, I have found. Big love to you.

    I need to get to know you better, I think.

  6. What a lovely post! This is so evocative. And how beautiful Jake looks, in all the pics! I feel for you over the constant talking - we're not quite there with Max yet, as he still hasn't figured out how to ask questions properly, but he still likes to comment on stuff over and over again...
    Have you tried drawing little calendars and day planners for Jake to help with anticipation? That really works well with Max. He was all set for a trip to Capadocia today (as we've got a few days off) so I drew him a 7 weeks calendar and now he knows we're going there for Halloween he's ok. (for now anyway...). Hope you do enjoy next week!


I am so sorry to have to turn word verification back on, but the spam-bots have found me - yikes!