Recently, I've gotten addicted to an on-line card game called Hearthstone. It involves strategy, you can get on at any time and play a 10 minute game, and it's something I can do to motivate myself when I need to get going with other work---"Okay, I can play one game, and then a load of laundry, one more game and a bunch of dishes..", that kind of thing. It's the kind of at home treat I think every parent of a child with autism needs---just something to help get through the day that requires no preparation and can be indulged in any time there is a few minutes to spare.
Freddy enjoys a game of Hearthstone now and then too, and last night, he asked to play. Which was great, except for one thing. It was during the first half hour after Janey got home from school. That first half hour is crucial in determining how the rest of the night goes. There are very specific rules for what I do during that time, specific and simple. I am supposed to be on my bed. Janey runs right in as soon as she is home to make sure I am there. I take off her shoes and she lies down next to me, and we snuggle. Then, depending on her mood, she gets up to do other things. You would think that would mean I could get up too, but you would be wrong. I need to stay right there. Like other things in Janey's world, like the TV and Wii remotes, there is a correct place for me at certain times, and after school, that place in on the bed. It is important to Janey that I be there. She checks back often to make sure I am where I'm supposed to be, and doing what I am supposed to be doing, which is nothing---I can't read, listen to music, play with the iPad---I am supposed to just be there, in case she needs me.
When Freddy asked to play, I knew I was taking a risk. Janey's been in a great mood lately, and I wanted it to stay that way. However, as any parent of a teenager knows, it's not that common to get an invitation into their world. I knew if I said no to playing with Fred, I wouldn't get another invite soon. And it's extremely important to me to be there for my boys, too. Teenagers, and I think boys in general, don't come out and tell you they need you around, they need to talk, they need you available, but that doesn't mean they don't. They do. So I decided to throw caution to the wind, get up and play some Hearthstone.
The results were quite predictable. A few minutes into the game, Janey came over and grabbed my hand, and said "Snuggle on Mama's bed!" I said "In a few minutes, Janey. I am playing with Freddy right now" If you think that worked, you don't know Janey. She repeated herself, more loudly, and then tried hard to reach over and turn off the monitor. I didn't let her, and she rapidly got more and more upset. I could see I was about to lose her into her screaming and crying world. But I also knew I was going to lose the round of the game to Freddy in just a few moves, something I don't usually do (yes, I'm fairly good at the game, not to boast or anything...) I decided to hold out, to not quit, to keep playing. And of course, Janey melted down, a meltdown that lasted until she went to sleep.
Now, what should I have done there? That is where there is no right answer. Should I have given in and quit the game, because Janey is younger than Freddy, is autistic, has greater needs? And also, because I knew the immediate result of not quitting would be drastic? Or was I right to stand my ground, to give Freddy some time and attention? Over the years, I know my boys have been shortchanged because of Janey's needs. Often, with teenagers, that's not a totally bad thing. I think most teenagers like a little space. But there's a limit. Also, I was enjoying myself. Janey was watching a video while also watching Tony make supper. She didn't plan on staying on the bed with me. She just wanted me there.
Unlike in Hearthstone, where making the right series of moves leads often to a win, and in which there is a clear win or lose at the end of a few minutes to show you if you've decided correctly, there is no clear answer so often when it comes to making choices about family life and autism. I'm sure I've made the wrong choice very, very often, on much bigger issues than this one. And I'm sure I'll continue to do so. Autism doesn't play by rules. It asks more of us than we can give. We can't do everything right. We can't be a perfect parent to all our children, all the time. We have to just make our choices and hope for the best, and accept that it's a rigged game in many ways. There isn't going to be any clear winner, but hopefully, we can play the best game we can along the way.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
2 comments:
I try to beat the meltdowns by imposing my will on my daughter. Sometimes it works. For example, my daughter will whine and fight to avoid going to daycare but she knows I’m going to win this one so she will give in. If her mom drops her off, my kid fights harder because she knows mom sometimes caves in to her demands and takes her home. I pick her up by her arm or carry her when she just lays on the ground to avoid going somewhere. My wife claims my daughter is already too heavy (40 lbs for a 4 year-old) but I tell my wife our daughter ain’t getting any thinner. Sometimes it doesn’t work. She will turn off what’s on TV if she doesn’t like it and to watch some kiddie show on DVD. Her yelling prevents me from watching because I like captions only on foreign movies. I try to hide things she shouldn’t play with but she can find them it it’s within her reach. Yesterday, I found a book in bottom of the humidifier because likes put things in there despite duct tape on the sides. We’re afraid to put her in room because she will smear poop like a prisoner in his cell if left in there too long. Then there are those erratic nights when we go to sleep in one bed and nearly everyone ends up in another bed by morning and it’s kind of haze under the influence of Zombien.
I pick my fights because I have to otherwise my house will turn a madhouse with a crazy little girl running things. My wife started driving the kids around to nowhere at night to make them sleep. Now they want do it more often. Another stalling tactic is to name a stuffed animal that isn’t in the bed and make us look around for it. It starts to turn into that old Twilight Zone episode where an omnipotent little boy controls the adults because if he gets mad he’ll wish them into a cornfield or turn him into a jack-in-the-box. There’s one that could be remade with an autistic kid.
I understand that Janey functions as a much younger child, and I know young children try very hard to impose their will on their surroundings. But even babies can learn to accept not always getting their own way i.e. they can learn to accept their mother is not going to walk them around all day etc.
I guess the question is whether or not Janey can learn to accept these kind of limits. If she is capable of it, then I think her life will ultimately be much easier if she can learn that just because she likes her mother to be lying on her bed in the late afternoon, that doesn't mean her mother will be doing that.
It's important our children feel loved and valued, but I think it's equally important that they become lovable, since you can't guarantee that you will always be there to care for her.
So I would say that allowing her to make you do something so useless (Lying on your bed, not being with your other children) will not serve her well in the long run IF she is capable of learning that she doesn't have that power. But I can't even imagine how hard it is . . . .
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