Written 9/09/14
“If you become a bird and fly away from me,” said his mother, “I will
be a tree that you come home to.”
The Runaway Bunny
They say that my son sometimes feels like he might float
away. Literally. Physically.
Up, up, up, off the ground, and away.
Can you imagine feeling like that?
Who’s “they?” Oh, everyone that’s ever worked with Cale - from his teachers and his therapists to his doctors and psychiatrists. Cale isn’t always in touch with his body. He therefore seeks out the sensory information that his brain doesn’t appear to be giving him, and demands intense doses of it. This regulates him to some extent. Cale wears boots at all times. To be more specific, he wears heavy snow boots. To be even more specific, he wears Bogs – the heaviest of heavy snow boots that I have been able to find so far.
“He probably feels like they keep him on the ground,” they say.
Cale is obsessed with his Bogs. He has them on his feet for every moment of every day, screaming uncontrollably if they’re ever out of his sight, and hiding them in the oven anytime he ever has to have them off, such as when he takes a bath. He’s equally obsessed with baths. And yes, I said the oven. I have to check to make sure that Cale’s boots aren’t in the oven before I turn it on, lest they become one with the evening’s lasagna.
“These are the dendrites (nerve endings in the brain, responsible for receiving signals) of a child with Autism,” the neuro-psychologist said yesterday.
The dendrite on the computer screen was covered in all of these little nubs.
“And these,” he continued, “are the dendrites of a neuro-typical (a kind word for “normal”) peer.”
The dendrite was nearly smooth, only a few little nubs with which to pick up signals.
The state has demanded that Cale have an official evaluation done by a neuro-psychologist (this was to be done by the time he turned eight years old), just to make sure that he really does have non-verbal Autism.
Isn’t that the most hilarious thing you have ever heard?
This will be used to determine whether or not Cale can keep his Medicaid waiver (or his CX1084328 or whatever it’s called – this isn’t what it’s really called). We therefore took him in last week for the testing, and he wasn’t in the testing room for forty five minutes before the neuro-psychologist’s assistant came out and said, “We had prioritized the tests in advance, in order to give him as few as possible (they didn’t think he’d make it through all of them), but even of the these… well… I’m afraid that they’re just too sophisticated for him.”
“That’s a very nice way of putting it, thank you,” I said.
“He’s such a sweet boy,” she smiled, “I just love his laugh.”
“Me too.”
“I think we’ve gotten everything that we’re going to be able to get,” she concluded, “You’re free to go now.”
The results of the testing were ready yesterday (I had perhaps procrastinated just a little in getting this done), which was also Cale’s eighth birthday. Big boy. We all kissed Cale a whole bunch of times and said, “Happy birthday Cale!” while he stared us, confused, having no idea why he was getting so much extra attention. Then we put him on the bus to go to school, and Shane and I and our caseworker went in to meet with the doctor and discuss the results.
“So,” the neuro-psychologist continued after showing us the dendrites, “it’s not that a child with Autism doesn’t pick up enough information. We think that they actually pick up too much, way too much in fact.”
“So he can’t always differentiate the information that is pertinent from that that isn’t?” I asked.
“Right,” he said, “There is too much ‘noise.’”
“Do you think that’s why he hits people all the time?” I said, “Maybe people are being too loud? Because of course he can’t say, “Oh, please don’t be upset” or “please be quiet.”
The neuro-psychologist explained that Cale’s hitting might have a function at times (be happening to get something in particular done or to communicate something), but that it often has more to do with impulse than anything else. Actually, the behavior starts out as an impulsive behavior (or whatever), but then it actually becomes imprinted in the brain (imprinting is that deep seated something that tells baby ducks to follow their mothers around). Then the behavior just happens (whenever he sees something in particular, certain children or certain things perhaps), for no real reason at all. This is the first explanation for Cale’s hitting that has ever actually made sense.
“We call it Peripheral Tensia Percepta Hyper Twatalotamus… (I’m totally making this word up, I couldn’t recall the actual word he used for it to save my own life),” he said, “and this makes these kinds of behaviors very difficult to manage, because there is really no predictability to them.”
“I know!” I said, “He’s walking along, holding his dad’s hand, smiling big and happy as a pea one second, and the next he has ripped away from his dad, has flown across the room, and is attacking a little girl in a pink tutu at the gas station!”
“That happened over the summer,” Shane laughed, “And it was almost as though it was nothing more than a response to the shiny, pink material of the girl’s tutu.”
“Have you guys applied for social security disability for him yet?” the neuro-psychologist asked.
“Um,” Shane answered, “Cale is only eight.”
“Yes, but you’ll need it when he’s an adult (in other words, Cale will be living with Shane and me for the rest of his life – oh, I always hope they’re going to say, “There is a new miracle cure that will enable your son to have his own life someday,” but they never do), and I think that it would be wise for you to go through the process of applying now, not that you’ll get anything out of it now, but because it will establish a baseline.”
He went on to explain that they will demand more testing if we wait until Cale is eighteen years old to apply, but that Cale will probably still be too disabled to be tested at that point. He said that the state might reply to this with, “Eligibility is based on the results of the testing. Therefore, you should have told us much sooner that he can’t be tested. It is too late to determine him eligible now. Tough luck.”
Whereas if we establish the fact that he is too disabled to be tested right now, and keep that baseline going for as long as it is true, then even if they do try to test at eighteen and find that they cannot, they probably won’t be able to use it against us.
The neuro-psychologist explained that he has placed Cale in the Chronic and Persistent disability category instead of the regular disability category (he does have Autism, but he also has a severe intellectual developmental disability). “So it will probably, and I say probably because you never know what the state and federal governments will be doing in the future, be easier for you guys to get the help that you’ll need when Cale is an adult,” the neuro-psychologist concluded.
“I don’t know,” Shane said, “I mean, I think that you just have to know how to test him. He can do all sorts of things. I have occasionally pulled up lists of numbers on his ipad and asked him to point to the number 36, and had him point right to the 36.”
“In order to have clinical significance, there needs to be some consistency to it.”
“Oh,” Shane and I laughed and choked and shook our heads, “Well, you’ve got us there.”
“He might be able to point to the boat that you’re asking him to point to one minute (they had tried to do the Peabody Test), but the next he appears to have no idea what you’re asking him to do (Boat? What’s a boat? Or he is suddenly attacking you because of the Hyper Twatalotamus). And of the things that he can do, with no consistency, he is still functioning so below the level at which an eight year old should be functioning that it doesn’t make any clinical difference.”
We talked to this doctor for a very long time. He is amazing. He answered question after question after question that we had, and I came away feeling like I had answers (or perhaps confirmations) that I had never really had before. We thanked him many times before we left, even though he had just shut the last door of hope that I had in my head about Cale’s future. You see, there was a reason that I had procrastinated this.
Nope. It’s not even working now. Geez. I have the hardest time feeling sorry for myself about this stuff these days. I’m not sure why exactly (actually, I am sure why). I mean, I’m usually an absolute master at feeling sorry for myself. Yet I cannot conjure up even the slightest bit of sadness in my heart about Cale anymore. I’m just so happy that I have him. I just love him so much.
“Hang on,” you might be thinking, “You don’t get to just show up and start talking as though you’ve been talking all along. Where the hell have you been?”
People have asked me this here and there, this past year, because I haven’t been writing in my blog. My dad even asked me, a few weeks ago now, how Cale was doing, which was an odd question at that moment because Cale was standing right in front of him.
“Oh, he’s good,” I answered, looking at Cale, then at my dad, then back to Cale again.
“I ask,” my Dad said, “because you haven’t been writing in your blog. Are you doing any writing at all?”
“I am,” I answered, “I have written a book.”
“Oh, good,” he answered, seemingly more relieved than enthusiastic, and then, before I continue with any of my self-conscious ramblings about my book, he said, “Just so you keep writing.”
My dad is one of those rare individuals that intuitively understand what’s really important.
I have written a book. And it feels as though I have given birth to an alien - a helpless, precious, beautiful little alien, with tiny little fingers and tiny little toes. It’s about five hundred pages long, and not only has it turned out to be quite different than I originally thought it would, but I’d also kind of like to wrap the thing in a soft, cotton blanket and hide it in a drawer somewhere. Unfortunately, this is not really what you’re supposed to do with a book. It defeats the purpose of all those hours spent giving birth to it somehow. Instead, this is the point at which you’re supposed to call in the wolves.
Not yet. Not yet, I
keep saying to myself. It makes me feel
so sorry for real writers.
Allow me explain the “real writers” comment for a moment, and why I do not place myself into that category. I am an artist. I have spent years and years of my life studying and practicing painting and drawing, and I deeply admire those that have done the same. These people produce beautiful work because they have had a lot of education and a lot of experience. And sure, you occasionally come across some genius that is fresh out of high school that has perfect control over a paint brush, someone that has already gone way beyond painting bicycles that look like bicycles, someone that produces amazing work for no other reason than that they are they who they are. But the rest of us resent him or her just a little bit, don’t you think?
Most of us are regular people, mediocre (at best) at first, and getting better and better with time and experience. I enjoy a certain snobbish pride when it comes to art, because I have had a lot of experience with it. When it comes to writing, on the other hand, I am starting at the ground level. At forty years old, I am a child again, with very little formal writing education and no real experience whatsoever. When I can get my ego out of the way, it’s actually an almost magical, beautiful experience, so perhaps the truth is somewhere in the middle. It’s not that I’m not a real writer. I am a baby writer perhaps.
To be honest, my little story probably needs to be torn up a bit. I can hear it all now. “This is the most self-absorbed, self-indulgent, obnoxious and delusional and, worst of all, boring story that this world has ever had the misfortune of being faced with, written by an author that is clearly mentally ill.”
Who knows? This kind of feedback might smooth out its little alien ridges and turn it into something that I could actually put before the world, but it’s hard. It really is like having a baby. You think that your baby is most gorgeous and most brilliant baby that has ever been put on this earth, clearly more beautiful and more advanced than all of the other babies out there, until you see someone else’s baby, and someone else sees yours. Then you notice that your baby’s head is just a little pointier than the other baby’s head, that your baby’s skin is just a little greener than the other baby’s skin, and that the other baby is rolling over already while yours is still just laying there, sucking on its tentacle.
The people that love you are not going to tell you that you have given birth to alien. They are going to kiss its green skin and all of its little ridges and tell you that your baby is just fine, which of course won’t do either. It is not just fine. It is brilliant, damn it! The people that love you cannot win.
“So no one has seen this material?” my friend, Gaaby, asked me one day.
“No,” I said, “I mean, I find my own story fascinating, of course, but I just don’t think that anyone else would find it all that interesting.”
“And I’m certain that you couldn’t possibly know,” she said back.
I have therefore signed up for a writing workshop, where I will take it and lay on the ground in the middle of the pack. It starts next month, and I am hoping to have a completed project by the end of the year. And who knows. Maybe this one is just practice. Maybe it really will end up in a drawer. And that would be okay too. The gift that has come out of it is that I don’t feel sad about my son anymore.
We took Cale bowling for his birthday. He had been to the bowling alley before, on a field trip with his class from school, so I knew that he would recognize the place, and I hoped that he would be okay there for a little while. It wasn’t all that busy, so the place was pretty calm and quiet, and the bowling alley attendant set up gutter guards and a turtle (a ramp that one can roll the ball down into the lane with) for him.
He did pretty well actually. I mean, he didn’t understand any it of course, but he did what was in front of him and ended up scoring higher than any of the rest of us (okay, I may have lined the turtle ramp up just right for him a few times). And we had pizza and soda and it felt like a real, live birthday party with his family, which was amazing for me because Cale had never really had a real, live birthday party before.
And as I was lying in bed with him at bed time, singing the song that he likes me to sing and contemplating the fact that he had no idea that it was his birthday, no idea what the word “birthday” even means, I looked at his sweet little, smiling face, smiling bigger than he had all night just because I was singing his song to him again, for probably the sixty thousandth bed time in a row actually, it occurred to me that this little person is unlike any other person I have ever known. Not only that, but he is really different than any other person I have ever known. He’s almost like having access to another world, a world of angels maybe. And just then, he looked over the edge of his mattress for a moment. Just checking on his Bogs. They were on the floor beside his bed.
“You don’t have to worry about your boots, Cale,” I said, “Do you see that picture (pointing to the picture on the wall) above your shelf?”
He didn’t look. He just looked back at me and smiled again.
“I got that from aunt Gaaby,” I said, “It says, ‘If you become a bird and fly away from me’ said his mother, ‘I will be a tree that you come home to.’”
He just kept on smiling at me.
