Have I mentioned that my daughter, Isabel, is cured? Don’t ever say the word “cured” to an Autism
parent by the way. There’s a school of
thought out there that completely shuts down with the very mention of that
word, and will hear nothing else that you might ever have to say about anything
again after that. This is because no one
is ever really “cured” of Autism, no matter how well one learns how to “blend
in.” But my daughter, it seems, has
learned how to “blend in” just enough to be able to fool virtually anyone.I had a healer tell me once that Isabel is healing herself – that Isabel actually has super powered, magical healing abilities, and that she is, in fact, healing her own body. Okay, maybe this healer didn’t use those exact words. But that was the general idea. My inner skeptic sprang immediately forth, shot the idea out of the sky mid flight, and watched it hit the ground with a thud. I’ve come to discover, however, that it doesn’t really matter all that much what my inner skeptic thinks.
It all started right before we moved, when our state caseworker asked me for new psychological testing documentation for Isabel. I didn’t have any new documentation, however, because Isabel hadn’t been tested since she was four years old. She’s eight now.
I could’ve asked the school district in my home town to do such testing, and it wouldn’t have cost me any money. The only problem with this is that I can’t trust the school district in my home town any further than I can throw it. I discovered this rather slowly over the year and a half that we lived in my home town again. And this is due, primarily, to my past (which I’m currently rehashing the details of in my book, so it’s all rather fresh to me again now), not so much due to anything current.
I discovered that this mistrust hadn’t gone away when my face split down the center, revealing a rather significantly sized inner demon, at the last IEP meeting that I attended there for one of my kids. It happened at almost every IEP meeting that I attended there in fact, toward people who not only weren’t there when I was growing up with my brother, but who also didn’t deserve to be treated that way. I couldn’t trust them. And it had finally become clear to me that I was never going to be able to trust them, no matter what they ever did or didn’t do. This is one of the reasons we moved to the other side of the state.
I decided to have an objective third party, and entirely outside of any school district entity, a thoroughly unattached, private neuropsychologist, do Isabel’s testing instead. It was rather expensive, but I’m now so very glad I did it. If the school district in my home town had come up with these particular results, I would’ve thought it to be a conspiracy for sure. I would’ve thought it to be the district’s attempt to get out of doing anything more for Isabel, and I would’ve felt that we’d been screwed at the deepest possible level.
Isabel’s I.Q. has risen significantly since she was four years old. Odd isn’t it? I mean, as far as I know, there’s a particular set of tests used to determine I.Q. And this set of tests is specifically designed to bring consistent results, no matter what a person’s disabilities are, and no matter how many years go by in between testing. I.Q. scores aren’t supposed to change significantly. Ever. It’s like getting gray eyes and hair that’s straighter than a horse’s tail – it’s what you’ve got to work with. That’s what I’d always been taught anyway.
My daughter’s I.Q., at four years old, was around 70 across the board. That’s significantly below average. Now, however, at eight years old, it’s over 100 across the board. Her overall I.Q. score is 110. That’s well within average range. And not only that, but she’s functioning on grade level in every area of her little life.
My inner skeptic began SCREAMING immediately, “WHY in the HELL has this happened?! I mean, how could they tell me that my daughter has a lifelong, permanently disabling condition, and then later simply change their minds? Someone must have screwed up. Either the first neuropsychologist screwed up (forgot to factor the Autism into the testing, for example, and has put me through HELL as a result), or the last neuropsychologist screwed up (how would it be possible, though, to accidentally get too high of I.Q. scores?). Who was it that f#*ked up?!!”
The more subtle, yet vastly more disturbing question that’s been rolling around in my head ever since I got the test results back, however, has to do with what all of this means for my son, Cale. I mean, are they simply going to change their minds about him someday too? I have hoped so for a very long time now, but, you see, this is where I always get into trouble.
I have one child, Isabel, that I’ve watched get better and better over the years (everything I touch turns to gold for her), yet I have another, Cale, that hasn’t changed significantly in any way (no matter what I’ve done for him) since he was about eighteen months old (he’s almost seven now). And this has just killed me. I mean, it’s made absolutely no sense to me at all because they’d both been given the exact same diagnosis.
Hoping that Cale will get better has come to mean living in a constant state of conscious awareness of the fact that he’s not getting better. It means worrying all the time. It means torturing myself continually with the idea that I’m not doing enough, and torturing everyone else (the insurance company, the state, the doctors, the therapists, the schools, etc.) with the idea that they’re not doing enough either. It means hating God and hating life and hating everything and everyone around me. It means slamming my head repeatedly against a brick wall, moment after moment, hour after hour, day after day after day. It also means dumping all of my family’s time, energy, and money into an endless black hole.
I’ve decided that it’s better, for me anyway, to have no hope at all that Cale will get better, but to instead accept that Cale is already exactly as he should be. And it’s more fun, I’ve discovered, to live in the decision that all is already as it should be. Then maybe I’ll be pleasantly surprised if Cale ever does get better, instead of becoming suicidal in the process of watching him not.
Have you ever noticed that my inner skeptic is just a little bit of a bitch? I’m never happy when I’m listening to her, and I really want to be happy for my daughter about all of this. I’ve decided, therefore, to do just that. I’m not listening to my inner skeptic on this one. I’m jumping for joy for Isabel instead. The state, as a result of her new I.Q. scores, cut all of Isabel’s services immediately. I no longer have to take her to therapy twenty thousand times per week! I’m down to only one kid, Cale, that I have to take to therapy twenty thousand times per week! WHA - WHOOO!!
We had an IEP meeting for Isabel at the new school here a couple of weeks ago. And they, too, are impressed with Isabel’s progress. Well, I shouldn’t say “impressed” exactly. They couldn’t even figure out how it is that they’ve been dealing with the same child as the one that’s on the paperwork from the school district in my home town.
“We’re not sure what to do here,” the new school’s speech therapist started off, “A year ago, you requested several therapy evaluations from Isabel’s last school. All the paperwork was signed to have the school do these evaluations too, yet it appears that they were never done.”
I smiled.
“Then,” she continued, “right before you moved here, you requested the results of these evaluations so that you could give them to us. Only one evaluation was apparently done, however, at that point. In fact, the date on the report itself is the exact same date that you actually made the request. And I’m not talking about your first request. I’m talking about your last one, the one that you made right before you moved here.”
“Uh, huh,” I answered, trying hard not to actually laugh.
“The school districts in this state are required to provide you with therapy evaluation results within sixty days of your request for them,” she went on, “but they apparently didn’t honor your first request at all, and only honored your second by doing one evaluation on the same day that you requested it. The only problem with this is that I’m not sure how this particular evaluation could’ve been done in one day.
“Hmm,” I answered.
“There’s got to be a mistake. We need copies of the results of all of the evaluations that you requested, but the last school didn’t send them to us with the rest of Isabel’s paperwork. Did they give them to you instead?” she asked.
I was going to have to spell it out for them, and without badmouthing Isabel’s last school somehow. It was a serious challenge, but I could be diplomatic.
“You have all the paperwork that I have,” I answered, “I’ve asked for the evaluation results repeatedly, but I, too, have only received the results of one evaluation. I’ve gone the entire school year not knowing how my daughter is really doing, and I think it’s safe to assume that this is because the rest of the evaluations were never done.”
Everyone shuffled uncomfortably in their chairs. I, however, inflated with gratitude for the fact that they actually seemed to care.
“I’m sorry if this messes up your own reporting to the state,” I continued, “but I lost the energy, some time ago, for fighting every little thing. All we have to go on, therefore, are the results of this one evaluation, which, as you’ve already said, wasn’t done until right before we moved. I should also point out, however, that all of the observations in this report were made the previous school year.”
They all looked at me at the same time. I was going to have to spell it out precisely.
“There is no current observational data in this report,” I said, tapping my finger nail lightly on the papers in question, “They slapped a new date on old information. That’s how they were able to get it done on the same day that I requested it. So what the last school district has actually given us to go on, regarding Isabel’s progress in her school therapy for this year, is nothing.”
Silence.
It was delightful to see, right on their faces, the way that I felt about this. And dropping the ball regarding these evaluations isn’t small beans compared to what the school district in my home town is actually capable of. At the end of my brother’s eighth grade year at one of the middle schools in that district, after he’d been tortured for two straight years by a group of other students, and eventually beat up at school during a school day, his middle school adopted a new policy which read, “We will no longer be responsible for the safety of our special education students.”
I’m not kidding. I bet my parents still have it in writing should I ever need to prove it. So Isabel’s evaluations not getting done are like… practically non-existent beans. I smiled politely and asked Isabel’s new IEP team, “Have I told you how grateful we are to be here, and how grateful we are for all of you?”
This eased everyone up a bit and created immediate smiles. We scheduled new therapy evaluations for Isabel. Then we compared the observational data from Isabel’s year in first grade (she’s almost done with second grade now) to the current information in the private neuropsychologist’s report. And the IEP team commented repeatedly, throughout the process, on how difficult it is to believe that Isabel is the same child as the one that’s in those old observations.
It still hadn’t occurred to me, at that point, to consider my daughter “cured.” In fact, the word didn’t actually occur to me at all until I took Isabel to the new psychiatrist here a couple of days ago. After reading the neuropsychologist’s report for himself, and after doing his own evaluation of Isabel, the new psychiatrist looked at me and said, “I’m going to change Isabel’s diagnosis if you don’t mind.”
“Excuse me?” I actually startled.
“Well,” he said rather off-handedly, “An Autism 299 diagnosis is traditionally reserved for a condition that doesn’t get better…”
At that moment, I watched the realization that I’m Cale’s mom too hit him in the head like a rock.
He’d just seen Cale a couple of weeks before, and we’d had a conversation about “Classic Autism.” But you know how doctors are. They’re so heady and wordy in their ability to say things without actually saying them, because they all have to be so damned careful about everything anymore. Or maybe I’m just delusional about the things that I hear about my kids. I don’t know. But I do know that he’d never actually said that Cale wouldn’t get better. Not in those words. No doctor had ever said that. How could they?
“Cale’s condition is never going to get significantly better,” he said.
Silence.
And there it was. He said it so directly, using Cale’s actual name and looking me in the eyes as he did so. But he also said it more sensitively that time, like he’d just taken a peek inside of my brain at the massive, unfinished, Isabel/Cale jig saw puzzle, and realized that I was missing this significant piece. He’d just realized that I didn’t actually know that yet. And of course I didn’t know it. Not for sure. Isabel and Cale have always had the same diagnosis.
It seems like Isabel has defied everything ever known about Autism. It seems like nothing short of a real, live miracle to me that she’s gotten so much better over the years, and so of course I’ve expected Cale to defy the limits of Autism too. Of course I’ve expected the same miracle for him. I’ve always hoped for it at the very least, and this hope has tortured me in ways that I can’t even really explain to you. I can’t tell you how great it was to finally be given the permission, by a doctor, to just let it all go.
I was so stunned by the information itself, at that moment, that I couldn’t say anything at all, but I’m going to have to remember to thank this man the next time we go in to see him.
“Isabel’s condition, on the other hand,” he finally continued once he felt it was safe to do so, “has gotten better and better. Therefore, I don’t think an Autism diagnosis is appropriate for her.”
It was just such a strange experience. I mean, at the exact same moment my daughter was let out of the cage, the door slammed shut on my son. I could actually feel the freedom, however, that comes from living in the decision that all is already as it should be. It didn’t even occur to me, that day, to be angry with God, or angry with life, or angry with anybody or anything. I didn’t even consider going home and going to bed for the rest of my life. All I could think about, in fact, after that appointment, was ice cream. What? Ice cream fixes everything, no?
I took Isabel to Baskin Robins after we left the psychiatrist. We ordered heaping, fats bowls of three different kinds of ice cream, each dripping with piping hot fudge, and each topped with an ice cream cone, like a pointy little hat, as more of formality than anything else. I thought I could actually hear my inner skeptic rolling over in her grave as Isabel and I ate and talked and laughed and celebrated, with our whole hearts, the fact that Isabel doesn’t have Autism anymore. It was awesome.
My oldest son, Alden, has been riding his bike to school lately, so I’ve been driving Isabel over in the mornings without him. And just this morning, as we pulled up to the school, there was only one place in which I could drop Isabel off. She was going to have to cross the parking lot, all by herself, in order to get to the place where she meets her class, so I said, “Watch the cars in the parking lot Sweetie,” as she was getting out of the car.
Isabel looked at me, for just a moment, before she shut the car door. I tried not to think anything of it. Then she walked over to the edge of the parking lot, stopped, and proceeded to simply stand there.
I waited almost a full minute, watching Isabel through the rear view mirror and actively holding my inner skeptic’s coffin door shut, before I began to investigate what Isabel was doing. I finally turned around and looked out the car window. There weren’t any cars obstructing Isabel’s path, nor were there any cars coming. Yet she was still just standing there.
By this point, my inner skeptic was banging loudly on the other side of her coffin door, so I went ahead and let her out. I’m afraid that I still need her in times like these.
Have you guessed what Isabel was doing yet? She was watching the cars. The parked cars. She was standing there sincerely, watching the cars, just like I’d told her to do.
I rolled the car window down and cleared my throat. Then I said, “Um, Isabel.”
“Yes, Mom,” she answered.
“You'd better get your super powered, magical healing abilities wand out,” I said, “because it looks like you missed a spot.”
“What?” she asked.
“Oh okay,” she said, and she ran off to meet her class.
