This is my oldest son. We call him. . .well. .. all sorts of things. For the longest time,he couldn't say his name. He called himself Beowulf, so we will go with that.
Beowulf has autism. He is high-functioning, but that doesn't mean that his issues don't occupy nearly every minute of every day. They are a constant presence, one that must be coped with, managed, fought against, and sometimes even enjoyed. There was a wonderful poem written once that compares having a child with autism to planning a trip to Italy and ending up in Holland. That poem can be found here, and I really recommend that you read it. It's awesome. Of course a response was posted on one of my favorite parenting blogs called "I f&^$% hate Holland" and man sometimes I get that, too. But there's another side of it, too. See, when your child with autism is high functioning, every day is filled with Windmill Land Mines. Every now and then, life is going well, things are as normal as they get around here, and all of a sudden *SMACK* you get bashed in the back of the head by a windmill you didn't even know was there. For instance, last week we learned about subtraction. I was fairly sure we had addition under control and it was time to move on. So, I wrote a bunch of problems out for the three who are in school to work. Suddenly, WHAP! school halts because THOSE SIGNS AREN'T RIGHT. There are certain signs that are used in the math problems and I drew the add sign wrong. It's wrong and he has to fix it RIGHT NOW. Before we can go forward, before I can explain why it's not wrong, those signs that are not right MUST BE FIXED. But, of course, they don't and there is lots of weeping and pulling of his own hair and rocking before I can understand that it is a whole different sign that means a whole different thing. Then, he's cool, moving on like nothing ever happened, diligently subtracting the second word from the first. The rest of us, though, are still a little rattled. We are all a little wide eyed, a little more tired than we were, are finding it hard to focus. It's like a summer thunderstorm just went through, or we were attacked by a windmill land mine. Beowulf loves his friends. Fiercely. He's also fairly convinced on some days that he's a wolf. So he's playing and they are running around and I'm looking on thinking about how awesome it is that he is able to reach out and have friends and then CRASH! He decides to show his affection by getting "puppy hands" and whining. Maybe even giving a lick. Damn it. Windmill. There's another kid who won't be asking us over for a sleepover. (By the way, sleepovers are one of the great heartaches of parents of kids with special needs. Do you know how many weekends we have been asked to a sleepover in the past year? 0. Do you know how many weekends he has packed a bag just in case someone invites him or set out entertainments and snacks in case someone takes us up on our invitation? 52. I cry over sleepovers and birthday parties on a regular basis). Or the other day. We are watching one of the Lord of the Rings movies as a family. Everyone has fallen asleep except for Beowulf who can NOT stop watching that movie until the tower has fallen. Can't do it. Too much anxiety. And we are at the part when Sam decides that he can ask his love out on a date. "Why does he look like that?" Beowulf asks. "Because he's decided that if he can go through everything he did, that he can probably ask out the pretty girl." "Ah," says the wise young one, "his baventures have made him brave." "That's right;" I answer, "just like you're brave. You wouldn't be scared when it's time a court a girl." BAM! SPLAT! "I DON'T WANT TO DATE A GIRRRRRLLLLL," he howls. "I want to stay with my family. I would miss you so much! Please don't make me leave! I don't want to LLLLEEAAAVVVEEEE!" An hour later, he has fallen into a restless sleep, and I open a bottle of beer for my husband and myself. Because when you've been brained by a windmill, sometimes that's the best answer.
Sometimes I think that it would be easier if the issues were always there. Other times I know that's not true. What I do know is that while sometimes I love the autism and sometimes I hate the autism (I ALWAYS love my son), I will never ever get used to the landmines. Of course, that is their nature, isn't it? When I start to get exhausted, and anxious, and overwhelmed, I remember a gift that my husband got for me, long before we knew that Beowulf had the issues that he does. It is a large, old, illustrated copy of Don Quixote. I'm not the biggest Cervantes fan, and my husband knew this, so when I opened it I was grateful but puzzled. My husband answered my questioning look. "You remind me of him," he said. "I am a man of LaMancha?" I asked. "No," he replied. "I am. . . mysterious and charming and alluring?" I said. "No," he replied. "I mean yes, but no." "Okay," I said, "I give up." "It's the windmills," he said, "the way you fight your windmills. It's one of my favorite things about you." I think now that it was one of the Inspired gifts, because it helps me remember: they may be windmills, they may be land mines, they might be giants (here's your earworm for the day), but whatever it is I'm ready to battle another day.
I enjoyed this portrayal of a day in the life of a special needs mom, her quest for joy, and her unconditional love. :)
ReplyDeleteI've got three on the spectrum, all very different, and I know what you mean. Little Miss has sensory issues and while for so many years we micromanaged to stay one step ahead of her, now that she's a teenager (and has hormones--awesome!) we've stepped back a little to let her grow. Land mines abound. And it's ALWAYS when least expected. And usually when there's no time to deal with it. At least we're down from 70 hours of therapy a week to 4. Warm wishes to you and Beowulf.
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