Saturday, July 01, 2006

Once Upon A Time, Before Autism Came Into My Life

I have picked up a really odd habit. I read stories about other people finding out their children are autistic.

I'm sure my therapist would say I'm in search connection, understanding, empathy, whatever. That's not the point- is it?

Usually when I read them, I cry. I do that a lot. I've ot some friends who will be surprised; I have other friends who will be thinking "again? That's not news." But there is something about knowing someone else had the sudden, wrenching, horrible moment I had when the word "autism" first fell from someone's lips, and they were talking about MY son. MY baby. MY sweet little darling boy who loved to give me a kiss, loved to tickle his baby brother's toes, loved cottage cheese with lima beans, loved knocking over block towers, loved getting raspberries on his tummy. I cannot tell you what a strange, other-worldly experience that is. It takes a while for the shock to wave off, and to realize once again that nothing has really changed, you're getting the help your baby needs instead of gliding about in blissful ignorance. Joey is still Joey. He didn't change. I did.

The pain is actually useful for me. Its a reminder that there is work to be done. It can be very easy to slip back into teh habits of ignorance. Before we knew, we could easily "read" Joey, and know what he wanted. We could attribute strange behavior to eccentricity of childhood. But then there's that pain, that flash of agony that says "move your butt, or he won't have a chance at a normal life. Move your butt, and at least he'll have a shot at independence."

Joey is considered mildly autistic. I can't imagine what someone with a severely austistic child feels like, or how they cope with that kind of devastation. If my moving my butt is just to give Joey a _shot_ at normal living... and remember, he may not, even as mild as he is, ever live independently. If I stall and don't do what is needful, he won't even have a chance at it- if I do everything right, he still may not ever live an independent life. Every minute counts. It can be very hard to try to get other people to understand that- even people who are supposed to understand and be helping, like school folks, therapists, family. Every minute counts.

So i seem to seek out these "once upon a time" punches in the stomach. Or are they kicks in the tuckus?

Friday, June 30, 2006

Going to sleep

Joey is starting to go to sleep before dark again. I still have to stay with him (he taps the bed and says "Momma sleep!" ) but at least he's going to sleep.

There's nothing more wonderful than snuggling a boy while singing "wheels on the bus" and having him sing the song himself- including our own verses (The Andys on the bus say "Hug My Brother!", the Joeys on the bus say "Whee whee whee!", His mommy says "I love you", his daddy says "I'm proud of you", and the monsters on the bus go "rumpus, rumpus, rumpus" [while tickling you]).

Joey is also starting to listen and enjoy longer stories. He has discovered a book I loved as a little child: _Sylvester: the Mouse with the Musical Ear._ He likes the description of the city, and finding the mouse in the pictures. He's also very into _In The Night Kitchen_, and Allan has been reading him _Babar_. My boy is starting to outgrow his baby books!

Wednesday, June 28, 2006


Allan and I came up with this, and are seeing if it starts making its way around the world as a chain email:

You need to be taking more time for yourself when:

Your hair repels water.
Your babysitter is shocked to hear from you, because she thought you moved.
Someone asks if you've read a good book lately, and you expound a postmodernist deconstruction of Pat the Bunny.
You consider anything other than Kraft Macaroni and Cheese to be gourmet cooking.
You have the "Sesame Street" theme stuck in your head, and the only song you can think of to get it out is the theme of "Blue's Clues."
You have to toss beer/wine from your fridge because it's too old to drink.
The last hit song you remember is "The Macarena."
Your idea of a fun night out is a trip to Walmart.
You think sleeping is a waste of time.

Monday, June 26, 2006


So today I started the "home program" I have for Joey- mostly workbooks of preschool skills he needs to start kindergarten. It wasn't a total disaster, but it was a little grating on the nerves. Basically, I show him the workpage, try to show him what he needs to do, and then use a DTT method of teaching him to communicate the skills he already has. He needs to be able to follow directions and complete worksheets to get through school.

I got him to teh table by enticing him with playdough. It was a good strategy- he wouldn't just come sit, especially when he saw there was going to be work involved, but teh playdough got him right to the table. Then we went through four activities. I thought we did really well. He only melted down twice in a major way, and just a few small frustration incidents. Not too bad. If I can get him doing this for me, he won't lose time when he gets back to school re-learning to focus.


Sometimes its really odd to have Andy doign things Joey doesn't do.

Andy is starting to speak in sentences. His pronunciation may not be up to adult understanding, but as his parents, we can usually make out his words- and this week, they have been beautifully strung together: "I don't want that", "I like apples", "Time for bed!" Getting Joey to make a sentence is still a miracle, an occasion for massive cheering and high praise. Now Andy gets his! And having him talk about likes and dislikes is odd, too. The way we know what does dislikes is because of the fuss he makes. Andy tells us. Very strange- and wonderful!

I was in New Jersey this week for my job, and Allan had the guys. Joey uses the potty nicely for Dad... wish he would get on that potty for me! Or perhaps just with less fussing. Fuss fuss fuss! All that energy wasted!

They guys have been watching Disney movies this week, too. Movies Joey wouldn't even look at, Andy is enthralled. Now Joey is starting to get interested, too- I think he understands the conversations more, so they hold more interest. Right now, they are playing Robin Hood with the movie- lots of couch bouncing!