The whimper heard around the world, or a week-long holiday from school…

This week I get to be the most annoying person in the world.  This egregious development results from J’s Thanksgiving holiday from school; instead of the usual Wednesday through Sunday break, this school district gives the students a whole week and this adds up to NINE days of J being at home.  J is appalled.  I have been preparing for this moment since I got the school calendar and I still don’t feel ready…

Mothers of neuro-typical children prepare for their kids’ vacations.  Mothers of developmentally-disabled children organize the invasion of Normandy and, once the whole thing is over, feel they didn’t quite hit the right mark.  When J is not at school, the world is the most amazingly boring and dull place, and guess who’s running that joint?  ME!

How, pray tell, do I make it dull and boring?  Aren’t there arts and crafts, games, projects, dioramas?  Yes, there are and, believe me, I resort to all of them, but…

As a general rule, autistic individuals are not particularly interested in hanging out with other people.  That is why it’s called Autism…emphasis on the auto part.  J is self-involved, not because he is egotistical but because (heaven help us) he’s just wired differently.  When an autistic individual thinks he/she is the center of the world it’s because their ability to empathize is severely impaired.  The amount of work that goes into training them to not think that way is quite gargantuan.  There is a lot of repetition taking place, and it’s hard to be repetitive and perky about it 100% of the time.

Our experience as a family is that J will hang out with us when, where and how he wants to; any extra effort we make to to interact with him will very likely be rebuffed.  Quite frankly, I cannot begin to quantify my admiration for the teachers and aides in his classroom.  Day after day after day they manage to work with not just my kid, but with several others, all of them with varying degrees of needs and abilities.  I have the leisure to plan this whole week, they have to work faster, under more pressure and with a lot more being expected from them.

I feel guilty a lot of the time.  The truth is that J can spend HOURS alone in his room, perfectly happy and entertained; I always think that this is in response to my poor parenting skills.  My kid, I often tell myself, doesn’t want to hang out with me because I suck.  As a result of this guilt, I tend to over-compensate by trying to engage J in some sort of game or conversation; I walk up to his room and peek in asking “hey!  How are you?”  That is when I get the “bye!” with which he dismisses things and people he is not interested in engaging with at the time.  The level of enthusiasm imbued into this word lets me know if he doesn’t mind a brief interruption or if I’ve elevated myself to the level of “pest.”

“Refrigerator mother” is an ugly term, but it’s out there, etched into the history of psychiatry and attached to Autism.  If a child was autistic, it was believed, his/her mother must have been emotionally unavailable, must have rejected him/her either in utero or shortly thereafter.  There are days when I feel like my hip should have Frigidaire tattooed on it, and I have to remind myself that I often get the “pest” level of “bye!” from J.  I also know that he will spontaneously seek me out and sit by me, his head on my shoulder and his arm around me, puckering his lips so I will kiss his nose and tickle him.  It’s like he wants a shot of affection, feels satisfied with it and moves on to whatever it is he wants to do that day.  Sigh…

A whole week of vacation means I will put my best foot forward and attempt to engage my child in anything and everything I can think of; it also means that his benevolence and patience will get a work out and he will humor me as long as he can and send me on my way when he’s had his fill.

We will play Nerf-gun-safari, and J will hunt and shoot plastic animals that he will then have to name with signs and spoken words.  We will color.  I will sit in the family room with him while he watches TV, the soundtrack switched to French.  I will go through my daily tasks and chores, and J will come to check on me with as much frequency as he is inclined to exercise.  We will take long walks when the weather is fine; we will run with the Wii Fit Plus when it rains.  If I am lucky, he will play his Katy Perry too loudly, start dancing and things will get knocked over, but he will be laughing his hearty, happy laugh as he does it and that will soothe me.  We will cook meals, make snacks, do laundry and listen to Boccherini while watching the rain fall…  Maybe he will want me to take out the camera and he will pose for me, making funny faces.

I’ll wing it this week.  I’ve prepared as much as I could with trips to the arts and crafts store, a 1000-piece puzzle, projects and activities, but I cannot change certain things.  At the end of the day, I will just have to accept that there are things that just are, and that part of my job is to suck it up when what I’m trying to do doesn’t fly…

Wish me luck…my superhero cape is definitely not floating triumphantly in the wind today.



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