Wednesday…the last day J has to go to school before he is home for 12 Christmas break days. I have a pile of laundry to work through; my kitchen (after the baking frenzy of two days ago) could use a top to bottom scrubbing; there is a considerable amount of dust that I could remove from every surface in the family room; my closet needs to be reorganized (and not in the aesthetically-pleasing sense…I mean in the I-can’t-find-my-shoe-I-didn’t-remember-I-had-this-tshirt-oh-do-these-still-fit-me sense.) I would be full of vim and vigor and tearing through this house like a little cleaning machine were it not for the fact that I know I have to keep J busy FOR 12 DAYS!
There is no need to panic, I know, but there is an absolute need to mentally prepare myself for this. The only occasions during which J has slept anywhere other than where we are have been when he’s traveled to visit his biological father (in 1999) and…no, can’t think of another one. There have been no sleepovers, camps, overnight stays anywhere. When he’s home on vacation, we’re with him…one of us is with him…sometimes all of us are with him. There was once a bad snowstorm that kept us homebound for four solid days, and we lived less than a mile from the downtown area…and at one point husband and oldest son decided to brave the snow and take a walk around the block because J was fixated on making one sound…constantly! So, yes, when he’s home, he fills the place with his presence…there is NOWHERE to hide.
I would love to sit on the couch all morning and eat popcorn while watching movies. Two problems with that: the only microwave popcorn one can find in the store these days seems to have varying degrees of butter, and we have one of those glass-top stoves that are just not conducive to popcorn popping. Also, Turner Classic Movies doesn’t have anything scheduled for this morning that would make me stop in my tracks and fold clothes while watching. So I’m stuck with my last day of unfettered joyous abandon and nothing truly exciting to do with it. I had intended to go to school with J to bake cookies, but apparently this is the equivalent of wearing a rubber swim cap, big clown pants, a midriff-baring top and one of those Groucho Marx nose, mustache and glasses things while kissing and hugging J and saying loudly “isn’t he absolutely precious???!!!!” in front of all his peers.
“Wait? You were going to take the last day before his vacation to hang out with him at school???? What is wrong with you?” I know, I know…I was going to hang out with my kid in anticipation of hanging out with my kid for twelve solid days during which he will be Droopy dressed like a Mountie to my Wolf: “Boo.” Why is that?
The truth of the matter is that, as demanding as J can be, it’s fun to be with him. He has a sense of humor, albeit not one that is easily ascertained by those who don’t know him. There is also the tiny matter of how guilty I feel that I can’t do more for him/with him; I am still clinging to the hope that he will remember me if I happen to keel over and die out of the blue, and the only way I feel I can achieve this is if I am a presence in his life.
No, I’m not going to get gloomy about this, don’t worry. I try to not drag myself into sadness thinking about these things. I simply am going to try to find a way to make the next twelve days something that lurks in the back of his mind and that he can summon when the next Christmas rolls around. With an autistic individual, this is easier said than done.
Have you ever seen auditions? You go in, have limited time for showing what you can do, and then you’re dismissed. I feel like I’m auditioning for J all the time. I walk in, he looks up (sometimes supremely uninterested) and I do a “bit”…bye! Sometimes, even when he’s happy to see me, I get a giggle and BYE! “Look what I have!,” and I bring something cool and interesting with me, he sees it, leans forward while smiling widely, grabs it and BYE! “Hey, I thought we could…” BYE! If I manage to talk him into going for a walk, he smiles the whole way, holds my arm, hums or sings, smiles some more and as soon as we turn into our porch BYE!
All parents have this problem. Our children don’t find us entertaining once they (or we) pass a certain age. With J, we have the problem on steroids. Every night I walk into J’s room to tuck him in; he puts his TV remote control away (the TV is on, but the screen is blank…), fixes his boxing gloves on the bed, grabs his Slinky and gets comfortable. I always kiss the nape of his neck because that’s the only place exposed to me; he giggles, says BYE! and I switch off the light. Those nights when I’m lucky enough to sit on his bed and read/sign a story to him, I have to be ready to speed things up once he feels he’s granted me enough of an audience. Let me tell you, friends, there have been times when The Very Hungry Caterpillar has looked more like he’s on crack than eating through apples, oranges… Ferdinand the Bull is not as mellow once we pass the midway point in the story. But I take it because it’s what’s being given to me…
Pathetic? Maybe. If you have an autistic teenager in your house, you feel a little pathetic from time to time. I try to imagine what it’s like to not have one; I try to remember what I was like. My oldest son doesn’t count because, well, he’s grown up in an autistic household so that has affected his experience of…everything. Did I spend as much time in my room, not wanting any direct contact with other humans as J does? Did I think my parents were as lame as J thinks we are? Did my parents put in as much of an effort to interact with me as we put into interacting with J? Yes, I guess I did. Yes, I definitely did. No, they didn’t.
I try to not feel guilty, and I try to not feel lame…and I could use a cookie right about now…