Tag Archives: Intelligence quotient

I Think I Finally Understand – But I May Still Need Your Help

I am reading I am intelligent by Peyton Goddard and Dianne Goddard with Carol Cujec.  I am not finished yet.  It is a powerful, beautifully written tale of triumph about Peyton who was denigrated, undermined, diagnosed as “mentally retarded” believed to be incompetent then learned to communicate through a facilitator as a young adult and proved everyone wrong.  Peyton’s story is shocking, heartbreaking and revelatory.  Her mother writes with a poetic beauty about her own evolution as she worked to help her daughter, refusing the labels being applied and yet allowing that they seep into our thinking unbidden despite our rejections of them.  I have been  unable to think of little else.

As I read Peyton’s and her mother’s words I finally understood why so many object to the labels of “high,” “low,” “moderate” when describing an Autistic person.  This is a concept I thought I understood, I certainly understood it intellectually, but I didn’t feel I completely understood until I was about half way through this terrific book.  I have felt uneasy when people have rejected the delineations for autism.  A  little voice in my head whispered those clichéd words, yes but if their child weren’t so high functioning they wouldn’t be so quick to dismiss these terms.  I admit to having felt uncomfortable and even upset when I read accounts of other parent’s struggles with their brilliant, verbose, hyperlexic children.  What I would give to have a child who could speak and think circles around me, I thought with envy.

Mostly I’ve remained silent, understanding that my thinking was limiting but unable to work out exactly why.  I felt the pull of other parents whose children are non-verbal, some violent in their frustration to be understood and unable to communicate. When those parents used the word “severe” it was a short-hand I thought I understood.  Yet, I read a blog of a parent who described her two children as being “severe” and then felt confusion when I read her posts because the children described were academically and verbally much more advanced than my own “moderately” Autistic child.  But I said nothing and tried to move on, understanding that I didn’t understand.

Finally I sent such a post to a close autistic friend whom I trust and knew would not judge me harshly.  I ranted and admitted how I felt.  She was patient with me.  She gave me the space to be confused, though it must have been difficult to stay calm in the face of my non-understanding.  Particularly as she is one who could be labeled “high” functioning and yet her teeth cause her pain when she is lied to, she suffers migraines and becomes overwhelmed, yet feels she has to pretend that she’s fine.  She carries the weight of not wanting to burden those who love her, because she “should” be able to deal with the things that she cannot.

As I read about how Peyton started to communicate by typing and how people began to see how intelligent she was, a little light went off in my brain and I got it.  Because (and this is probably obvious to many of you already, but I’m a slow learner you see) Peyton was labeled all sorts of things by people throughout her childhood, but those rating systems did nothing but hurt her.  Not one of them actually helped her, they didn’t support her, they were used to further segregate her and they were used by some to abuse her horribly.  As I was reading, I thought, right because Emma is considered “moderately” autistic, but she’s not moderately intelligent.  Her intelligence is extremely high, so what does moderate really mean.  Is that how she “seems” to neurotypicals?  But how is that helping her?  It doesn’t help her.  In fact, by thinking of Emma as moderate or severe or mild she is being limited.  If someone who is thought of as “high” functioning then can’t cope in a crowded place with fluorescent lighting and begins shouting and flailing about, the common thought is, well he could control himself, but is choosing not to.  Just as a “severely” Autistic person is an inspiration and miracle when they are able to express themselves and communicate their thoughts to those who had slapped a low IQ on their charts.  These ratings become the method by which a human being is seen as non-human or less human.

In my enthusiasm I wrote to my friend, Ib last night.

Me:  I think I finally understand what you and others have meant about characterizing autism in terms of mild, severe etc I suddenly had a brain flash and I think I understand why.

Ib:  Oh thank heavens 😀

Ib reminded me that the scaling system is ineffective as a descriptive device as children grow, progress and become adults where they continue to grow, evolve and progress.  I thought of Peyton finally finding a way to communicate in her early twenties.

Ib said, “You wouldn’t grade me now as you would grade teenager me the level doesn’t stay we grow, like anyone else.  I remember things that is why I can suggest to you what Emma may mean with levels-thinking, you may never have seen me as a resource because “Ib is not like my Em” but you see that I am.”

Ib is right.  She is my friend, first and foremost, but she is also someone I rely on to help me understand.  Because there is so much that I don’t.  But with help I can.

I would love to hear from anyone who cares to chime in here.   If I’ve been disrespectful, please let me know.  I think I’m getting it, finally, but I want to hear from all of you.  I need to understand this.  For my daughter’s sake, I have to understand and she can’t explain it to me…  yet.

Look! She’s a Therapist, She’s a Teacher, No She’s a Mom

Sometimes it all feels wrong.  You know?  We’ve been working with Emma on her literacy, reading, writing, typing and then a couple of months ago I just couldn’t keep doing it.  I hit a wall.  I kept telling myself, you’re just tired.  You’ll get back in the saddle, give yourself a break, you’ll feel more energetic, you will.  You just need a little break.

But now it’s several months since I gave myself that little talk and I am no closer to “getting back into the saddle” than the day I said all of that.  And here’s the thing…  when Em was first diagnosed, we did what everyone advised us to do.  We fought and were given 40 hours of ABA, we were trained to continue the ABA after the therapists went home and during the weekends.  Emma was bombarded.  We called it baby boot camp.  It was horrible.  I hated it.  I remember saying to the diminishing few who’d listen, But I don’t want to be Emma’s therapist.  I want to be her mother.

I use to sit with Nic and Em in our big rocking chair, we still have it.  We still fight over who gets to sit in it, though these days, Richard has successfully commandeered it as his own.  But when the children were still little, it was mine, all mine and I’d sit in it with both children in my lap, holding them, rocking them.  Smelling their heads, that smell that only small children have, that smell that no one’s managed to bottle, but that if anyone did, they’d make millions off all us moms.  I loved my new role as mom and I wasn’t thrilled to trade it in for therapist/autism mom extraordinaire.

What was so wild about those early days was how all the “experts” I listened to, I believed they knew better than me.  Despite the fact I kept reading the masses of research saying how little we actually knew, how much we had to learn, there was never any shortage of people who seemed to think they knew it all.  Funny that I never thought to question them in the beginning.  Or more accurately, I did question them, but I tamped those questions down because I so wanted to believe, I needed to believe that someone somewhere knew what the hell they were talking about.

But they didn’t.  Not really.  They certainly didn’t know about Emma.  Every single thing anyone in the field of autism predicted about Emma has proven incorrect.  Everything.  It’s kind of astounding.  But it’s true.  “Oh, she’ll be mainstreamed by the time she’s in kindergarten” they assured us, always with the codicil, “if you keep doing ______  (fill in the blank).”  “You’re fortunate she’s so mild.  She’ll be one of those kids who loses the diagnosis,” they’d say with a tone of certainty.  And so we put our better judgment aside, we tamped down our questions, we trained, we worked with her, we questioned her, we showed her the flash cards with the bike and the green t-shirt and the yellow car, we played umpteen games of peek-a-boo and sang the ABC song and Head, shoulders, knees and toes for the nine hundredth time, never questioning why we were doing this.  Never asking ourselves, is this really the best way to spend our time with her?  Are any of these things remotely meaningful to her or are we doing this because this is what a neurotypical child would sing or play?  That Emma was not a neurotypical child was, evidently, not the point.

Now Emma’s ten.  If you ask her, she’ll tell you she’s nine.  I keep meaning to teach her the old, don’t-you-know-its-rude-to-ask-a-lady-her-age routine, thus letting her off the hook.  Because really, who cares?  We ask each other questions like “how old are you,” which is equivalent to the adult question, “what do you do?” but it’s really a way to fill in the silence.  A silence that can be painful.  A silence that doesn’t right the feeling that it’s all wrong.  So we fill it in with words and ideas and studies and tests, but we don’t stop to think, what exactly are we testing?  What exactly are we studying?  What exactly are we doing?  If we test someone and make conclusions based in neurotypical thinking aren’t we missing the point?

I spoke with an Autistic friend yesterday.  She told me she was given a standard IQ test where she proceeded to get every single answer right, so they kept giving it to her, trying to figure out how it was that she was getting all those answers right because she presented as having so many other “issues” and was clearly autistic, they concluded that something was wrong with the way the test was being given.  Meanwhile she thought it all great fun and each time they gave the test to her, she just dug in and cheerfully gave all the correct answers again and again, confounding them.

Which brings me back to all these therapies that require parents to become teacher and therapist.  I’m not a teacher for good reason.  I do not have the skills or the desire to be.  And while I’ve stepped up to the proverbial plate again and again to do what needed to be done, I don’t want to continue.  I want to be Emma’s mom.  I like being Emma’s mom.  I love reading to her and playing with her and dancing with her and being silly and making stupid faces and making up ridiculous sounding laughs and running around pretending to be a monster and cooking with her and showing her how to fold and sort the laundry and how to brush her hair and give her pedicures and manicures and run through the sprinklers together.  I don’t want to be her teacher too.

And maybe, just maybe I don’t have to be.  Maybe all those experts and autism specialists are wrong.  Maybe I can just be her Mom and that’s enough.