Uncertainty

This morning as I dropped my kids off at school I went into the classroom of J, my child with autism, to try to figure out the mystery of yesterday’s “missing” homework packet. His teacher was in the process of writing the daily schedule on the white board, and as I tried to find the homework in my limited time, J was completely transfixed by the process of the schedule being produced.

I looked in his desk, nothing. I looked in some folders there, nothing. I tried to get his attention to ask him. “J. Where did you put your homework? J. Look at me. Where is your homework?”

I know I’m not supposed to say “look at me,” and when the words came out of my mouth I immediately felt regret, but I needed his attention and that gave it to me, for about a nanosecond. He didn’t know where his homework was. I gave up the search. We walked over to his teacher to report the bad news (I had been emailing with his teacher about it yesterday so he was prepared for this) and his teacher asks him, too: “J. Where is yesterday’s homework?” J responds with “We have library on Wednesdays.”

At that moment J cared about nothing except the daily schedule. We were pushing him too much, I knew that. He needed time to absorb the schedule before he could focus on his homework, but the bell was about to ring and we didn’t have the time. We all stood there, and other kids stood there watching, as J managed to say “I don’t know where it is.” And that was the end of the discussion.

I left the room and, walking to my car, I encountered my other child, J’s brother, who is younger and NT. He was in a group of boys playing with some paper airplane and they were running and chasing it and laughing. He didn’t even notice me.

I walked away with a heavy heart. J is an amazing kid, and despite all the progress he’s made over the years, he is very much autistic. He will always be very much autistic. He will always be different, he will always be unusual, he will always stand out, in some way. As much as I try to prepare him for the world I know that I won’t be able to do that completely. He will inevitably face heartache and heart break and whatever other kind of pain the world is waiting with.

I want to grab him up and run home with him so I can keep him safe from what’s out there, just like when he was a baby. I want to put my arms around him and keep everybody else out; keep them from hurting him. I want him to be happy, and the uncertainty of it all sometimes is too much for me to handle. Am I doing enough for him? Am I doing the right things? I don’t know; I have no way of knowing. I can only hope that he will be able to make his way and that I will have given him enough tools to be equipped for the task.

I feel physical pain in my chest just writing these words. I don’t even care where his homework is.

Sex

I admit, I was a bit of a freak when my husband and I were dating. I remember one time we went out to a place to shoot a few games of pool, and have a few beers. When we left, we walked to our car, which was in a dark corner of the parking lot. We were young and in love, and a little buzzed, and I was wearing a short skirt. To our knowledge, no one saw him lean me up against the car, pull my skirt up, and test out my birth control method.

It’s not like there was a slow, steady decline in our sex life once we had our son. In truth, it came to a screeching halt, as we adjusted to the demands of parenthood.

Okay. As I adjusted.

Now I’m not going to say that women have it harder than men. But what I will say is this: women make it their responsibility to be aware of every minute detail of their child’s needs, from when it’s time to graduate to nipples for bottles that have larger openings, to which brand of diaper is better for large amounts of pee, versus which ones hold explosive diarrhea (because there doesn’t seem to be one diaper that can do both), to when it’s time to clip the nails of little fingers and toes.

But beyond that, our baby was needy. And he didn’t nap well. And as he grew, he still required an inordinate amount of attention.

Soon, the diagnosis came. Our son was on the spectrum.

The daily demands exploded and soon included: therapy appointments, IEP meetings, autism and behavior research, specialized toys and devices to meet sensory needs, medications, and diet. There was a lack of play dates and opportunities for both myself and my son to socialize, and there was constant, frenetic and, sometimes, aggressive attention and behavior to navigate.

After enough time had passed, I got to a point where I stopped missing sex. It became one more thing on my never ending to-do list, and kept getting bumped down by other, more important, things. We didn’t have babysitters lining up, so we, individually and as a couple, become less important.

There was no “we” anymore. There was no “him” or “I” or “us”, there was only autism and its demands.

But you can’t live in that place forever. As I watch my son grow, and realize that someday he will be grown and out of the house, either independently or with support, I know that there will be nothing left but a gaping hole and a person I don’t recognize anymore.

I’ve made a decision to reclaim some of what I’ve let slip away, to carve out some time for us in the evening, when and if we get this child to sleep for the night. We might not be the same people we were that night long ago, shooting pool and laughing, living, like there was only this moment. We’re heavier and more tired, worn down. But “we”, “us” is still in there.

That short skirt doesn’t fit anymore. And there’s no sitter to relieve us so we can go out and shoot pool. But I have to believe the freak in me can be creative with what we’ve got.

I can’t let autism’s demands break “us” apart. It will not define my family anymore.

So please, no phone calls or text messages after 9pm. “We’” will be busy.

Look at this couple.

I bet they're FREAKS.

I know nothing about the site it came from.

I just like the picture.

Lost Opportunities

I went shopping today.  In our divide and conquer marriage, my wife stayed home with our youngest while I took our oldest to dance class, then went grocery shopping.

There was a girl in a wheelchair.  I'm not sure how old she was.  She looked maybe 12. . . maybe 14.  Probably younger though.  She wasn't paralyzed, her feet would periodically explore out from the wheelchair.  The girl's grandmother was pushing her as her mother scouted ahead with the grocery cart.  These details became clear to me over the course of our aisle to aisle meetings.

I passed them in the coffee aisle, them going one way, me going the other.  The girl's hand snaked out and grabbed my cart as I passed, and the mother apologetically unclasped her daughter's hand from the cart.  I smiled and told them it was okay, but I really wanted to do more.  The girl looked through me, around me, not at me.  She looked around me not in a way that spoke of avoidance of eye contact, but of vacancy.  Her lips were wet with what was either drool or something she'd been fed.

I couldn't help but compose my own back story for them and I found myself inexplicably near tears a couple times, shaking my head in disgust at my emotional fancy:  Divorced mother, relying on her mom to help with her daughter as she runs errands, I thought.  And I don't know if any of that is true, but that was the story that popped into my head.

I don't know too many faces of cognitive impairment.  I don't really know anything but my daughter's autism.    I just imagined their long road ahead, and how there will most likely never be a time when that little girl is able to shop for herself.  And maybe she's able to type or will one day be able to speak, I don't know.  I just wanted to do something nice for them, and I couldn't think of anything.  I wanted to get in line at checkout and offer them my place.  I wanted to make small talk with her daughter and tell her that "MY daughter likes to grab onto things too, and she's almost quick as YOU are!"  I know that their shopping trip wasn't "normal" by most people's standards, but I wanted to MAKE it normal.  I wanted to MAKE it easy like sometimes I hope someone will try to make it easy for us when our daughter is struggling.  I wanted to give her a card and say, "People like you, with kids like yours, are writing stories about it, and it makes things feel better sometimes when you think nobody out there but you can possibly understand how hard it can sometimes be."

But she was gone before I could think of something more to say.  She gently and (it seemed) lovingly, removed her daughter's fingers from my cart, apologized and moved away.  When I got to checkout, they were already in line.  I looked for them after I checked out, but they were gone.

And it felt like an opportunity lost.