The reason that we’re not asking for help moving yet is because we’re leaving most of our furniture at the other house until it sells. It’ll look nicer for the open houses with furniture in it. We’re just moving the little stuff into the new house now so that we can stay in it. That way I won’t have to spend all of my time cleaning the other house up after my kids in an attempt to stage it. We’ll ask friends to help us move after the other house has sold. Where was I? Oh yeah, the speech therapist.
“I think people sometimes do have a hard time believing us when we say that Isabel has Autism,” I answered, “People tend to tell me how well behaved and seemingly normal Isabel is, unless, of course, they spend much time with her.”
“Well she presents so typical!” she said, “She’s so polite with the “please” and the “thank you” and the “you’re my favorite therapist in the whole wide world.”
“I know,” I answered.
“In fact,” she continued, “I even had a hard time believing it until I put her through the testing required to determine her therapy goals. It’s a test that gets increasing more difficult as you get the answers right, so you begin to experience failure rather quickly.”
“Uh oh,” I said, “What happened?”
“She began to cry when she started getting the answers wrong,” she answered, “so I explained to her that this is what is supposed to happen.”
I rolled my eyes.
“I explained that this is how I’ll know what to work on with her in therapy,” she continued, “but she didn’t seem to hear me at all. And when she got the next answer wrong, she started pulling her own hair out by the handful and slamming her head onto the table! It came out of absolutely nowhere! And I thought to myself, “Oh my GOD! Here it is! Here’s the Autism!””
“Yup,” I smiled, “Sounds like my little peanut.”
“I was so scared of what you guys would think when she came out of her therapy session with bald spots,” she continued, “I mean, she was literally ripping handfuls of hair out of her own scalp.”
“Oh, don’t worry about bald spots,” I assured her, “We know our Isabel.”
This therapist, luckily, wasn’t intimidated by Isabel’s behavior at all, “I was able to get her back right away by returning to some of the questions that I knew she’d get right. Then she reverted right back to the “This is so fun!” and the “Did you know that you’re my favorite therapist ever?””
We both laughed out loud.
“But it really got me wondering how often you guys struggle with people not believing you,” she concluded.
I never have this problem with Cale. Cale, in this one tiny way, is easier than Isabel. People take one look at Cale and know beyond a shadow of a doubt that he isn’t anywhere near “normal.” But high-functioning Autism, especially with the introduction of psychiatric medication (Isabel is on two of them now), really can present quite “typical,” almost to the point where one might wonder why on earth a kid like this would need help at all.
I was thinking about this as I walked Alden and Isabel to school this morning. It was cold out. Snow hovered over head as we walked, clinging to huge black tree branches, and threatening to drop great fat puffs of itself onto our heads. Ice crunched under our feet. And our breath hung in the air in front of our faces anytime we dared exhale outside of our scarves. We all stayed warm enough though, as I had insisted on everybody wearing every snow time item - heavy coats, hats, scarves, gloves and snow boots. And I was feeling rather proud of myself about this until I started humming the Lord’s Prayer on my way back home.
I have this tendency to think that if I can just control everything, just keep everybody safe and happy and comfortable, that everything will be okay. But as I hummed, I was struck by the realization that just because I make my kids wear hats, doesn’t mean that snow isn’t going to fall onto their heads. It never ceases to amaze me just how little control I actually have.
I always imagine that we were in church when it happened, singing the Lord’s Prayer. The congregation at my church could sing the Lord’s Prayer like nothing less than a choir of angels. Well, angels with head colds maybe. It didn’t actually sound very good, but the passion was there. The passion was alive. The passion could’ve sparked a thousand fires, in fact, during all that wailing. And, for some odd reason, these are the sounds that go through my head whenever I find myself thinking about it.
My brother was in the eighth grade the first time he made a friend at school. He’d never known how to go about making a friend, so he asked my mom how he could to do it. My mom told him to get the boy’s phone number. And, the very next day at school, he did it. He actually asked the boy for his phone number. And the boy actually gave him his phone number.
This was a big deal at the dinner table that night. Besides being happy for my brother, and happy about how excited my parents were about this, I was surprised at how much it relieved my own mind to know that my brother finally had a friend at school, because this friend hadn’t been chosen for my brother. It wasn’t me, or the child of one of my parents’ friends, or somebody that he’d been forced to group up with at Sunday school. This boy was somebody that my brother had chosen for himself. His name was Chris.
I think my brother may have chosen Chris because the other boys at school picked on him too. Well, “picked on” is a rather nice way of putting it actually. Every single day, and often multiple times per day, groups of boys would encircle my brother and/or Chris at school, and push them back and forth between themselves like human-sized beach balls. They’d show them knives and laugh and threaten to kill them, all while knocking them down, waiting for them to get back up, knocking them down again, etc.
They did it in the mornings before school. They did it at lunchtime. And they did it in the afternoons after school. They did in the hallways in between classes. They did it in the bathrooms. And they did it in the parking lot outside. They did it anytime and anywhere they ever happened to get my brother and/or Chris alone.
Chris only put one bullet in the gun before spinning the chamber. Then he put the gun into his mouth.
“Give uuus this daaay
Our dai –ly bread,
And for - give uuus our tres - passes
As we forgive those
Who trespass against uuus,”
The gun didn’t go off. He smiled and spun the chamber again.
“And lead us not
Into temp - tation,
But de-liver uuus
From e - vil.”
The gun didn’t go off that time either. He decided to give it one more try.
“For Thiiiiine
Is The KING – DOM!
And The PO-WER!
And The GLOOO – OORY!!”
I leaned over, looking past my parents who were sitting in the church pew beside me, at my brother who was sitting on the other side of them. He looked back at me and smiled politely for one split second before the big climax, littered with at least eleven out of tune old lady voices peaking at top volume, “forrr – EEEEEEEEE – everrrrrr!!!”
The gun had gone off that time. The church organ hummed, “hum hum hum hum hum huummmm.”
Softly now, “Aaaaaa - aaaaaa – mennn.”
It happened on a Sunday. My brother had gotten Chris’s phone number on Friday. Then he went to school on Monday and learned about Chris’s game of Russian Roulette. Chris had died.
People sometimes ask me how important it could really be for a child with high functioning Autism to have help in building “social communication skills.” And by “social communication skills” I don’t mean,
“How are you today, Isabel?”
“I’m fine Mrs. Smith, how are you today?”
Those kinds of social skills require little more than simple imitation. My daughter, and my brother for that matter, both have that crap down pat. What I’m talking about is how to actually read people, and how to make sure that others can read you.
I read somewhere one time that people with high-functioning Autism tend to bring out one of two instincts in other people – either the maternal instinct or the predatory instinct. My brother, obviously, brought out the predatory instinct in others most of the time when we were growing up. I really wish I could say that those bullies felt a shred of guilt for their contribution to Chris’s death, and that they then stopped picking on my brother. But they didn’t. In fact, that was only the beginning.
My mom used to say she felt like she was throwing my brother to the wolves every time she sent him to school. And this was years ago. But I know people who, even today, struggle with allowing their children with high-functioning Autism to attend school. And I get why. I also refuse to have any kind of opinion about whether or not a child with high-functioning Autism should attend school. Some parents can handle it, and others cannot. And they’re perfect either way in my opinion.
I want Isabel to attend school, even though she struggles with it greatly, because I want her to get intensive practice living in this world. This may sound awful, but my hope is that she won’t have to live me with for the rest of her life. I’ll probably already have Cale living with me for the rest of his, so I’m hoping that Isabel will become a self-supporting adult some day. Therefore, I throw her to the wolves. And I know full well that this may or may not make any difference.
It’s not that I feel I couldn’t provide Isabel with appropriate academic replacement at home. It’s just that I think the social skills she needs for success in this world will more likely be developed at school (with therapy support) than at home. And, again, the social skills that I’m talking about are, well, here are a few examples:
1.
How to figure out what others are thinking
and feeling.
2.
How to factor those things into my own
actions.
3.
How to get my own needs met, emotionally
and otherwise.
4.
How to get through doing things that I
really, really, really don’t want to be doing.
5.
How to be a team member.
6.
How to be a friend.
7.
How to recognize a bully.
8.
What to do when you encounter a bully.
9.
What to do when you encounter ten bullies.
10. How
to get revenge on bullies.
What? Oh, alright. We’d better scratch that last one. But these are the kinds of things that children practice at school on a daily basis just by being there. For some, these things come rather easily. For others, however, they come with much torture.
I must admit that when I think about what my daughter goes through at school, or, more importantly, what she’ll probably go through at school as she gets older, I sometimes find myself wondering if it would really be so bad to have her live with me for the rest of my life. And I often find that these kinds of things have more to do with what the parents can live with than anything else.
Isabel, being a girl, will hopefully see more of a maternal instinct in other girls as she grows up than my brother saw in boys. I don’t know though. I’ve seen a pretty hefty predatory instinct in certain girls. But I’ve also seen boys (not many, but a few) turn their own predatory instincts onto predators and protect my brother (Hi church camp friends! I love you!). How people react to stuff, I think, can be pretty idiosyncratic. But most of the time, when it comes to my brother anyway, I find the reactions of others fairly predictable.
My brother never got help in building “social communication skills.” He got help with a lot of other things, but they really didn’t know to target the social skills arena in high-functioning Autism thirty years ago. In fact, they didn’t even know to call it high-functioning Autism thirty years ago. Not only did my parents struggle with people not believing them, or, at the very least, peoples' continual tendency to minimize my brother’s problems, but they didn’t even have a name that they could call it.
I can tell you that Autism, even high-functioning Autism, doesn’t go away just by waiting long enough. And I know that “building social communication skills” sounds pretty damn trite compared to what it actually means, but I’ve also seen the repercussions of missing this important piece. I'm not even entirely sure that it would have made any difference for my brother to get help with "social communication skills." And I obviously can’t go into all of this in a short blog post, but that’s why I’m putting it in my book.
My brother’s experiences are a blessing for me, in a way, in that whenever I find myself tempted to believe that Isabel doesn’t really need all of this extra help, I find myself haunted by the Lord’s Prayer on my way home from the school. But they’re also a curse, in a way, because I find myself haunted by the Lord’s Prayer on my way home from the school. I have learned one gorgeous, valuable, irreplaceable thing though. I’ve learned how to not be so afraid. And this isn’t because I’m tough. It’s because I’m able to tell you about the things that haunt me. And somehow, when I do this, they lose their power to dominate my decision making.
I guess I put hats on my kids because that’s the kind of mom I want to be. And I’m grateful for the ability to recognize that this is where my power ends. The results are then up to God. And I guess I insist on my daughter getting therapy and going to school because that’s the kind of mom I want to be. And I’m grateful for the ability to recognize that this is where my power ends. The results are then up to God. And when the snow falls, I’m grateful for the ability to trust that it’s just a communication that it’s time for something else - another idea, another tool, or another path. But sometimes I think I just need to know that someone can be okay with a cold neck.
I don’t always get to know the reasons for things. But I, thankfully, don’t have to. I do quite love not being God. And I absolutely love living walking distance from the school!
