Then There's My Daughter. Remember Her? The "Autistic" One.

Before this New Year's Day (when I found a lump), the greatest worry of my life was my daughter’s well-being. This worry consumed the entirety of last year, when, in January, I enrolled Jo in a Montessori pre-school which turned around and said they couldn’t handle her. At three, she wasn’t self-sufficient enough, she didn’t participate in activities. Jo was so frustrated with the situation she was hitting the other kids.

If I had gone with my gut instead of my ego, I would have enrolled her in my first-pick daycare instead of pushing for a fancy preschool. We were moving her out of the daycare she’d been in since infancy, a daycare I wouldn’t consider very good, but her dad’s sister had worked there which made my transition back to work a little more sane (or maybe a little less sane than it could have been, considering this particular sister).

Hand-wringing at its finest, parental anxieties at their worst, I also contacted the school district at the advice of the Montessori director since no one knew whether Jo would be “ready” for kindergarten. She was assessed by the diagnosticians and determined to have “signs” of autism with a diagnosis of “Non-categorical early childhood” (translation: your kid is not normal by our standards).

I kept emphasizing that there’s nothing wrong with her; she acts exactly as I did when I was her age. What wrong is that standards for kindergarteners has changed to exclude my extended family tree as acceptable candidates.  My two brothers didn’t even go to kindergarten, as it’s not required in Texas. But we didn’t spend much time in daycares either, such is the benefit of one’s mother working nights and weekends. Back then, it was still the parent’s job to have the kid “ready” for school. I was looking for some guidelines and strategies, so I could get her ready. What I got was a swarm of women whose job is dependent on fueling my anxieties that I hand over my kid and let them get her ready.

Against my judgment, Jo was enrolled at the elementary school in August in the “Pre-school Program for Children with Disabilities”. She’s not disabled, assholes, but if you can get her ready for kindergarten, we’ll give it a shot. It was 3 hours, 5 days a week, and the daycare would transport her to and from.

The transition into the classroom was a rough one. Jo would hit the teacher. She did it to get attention, as long as the teacher was occupied with her, she wouldn’t have to do the activity and she was disrupting the group.

Such was the report I received at the parent-teacher conference in September, with the teacher describing the situation as if Jo couldn’t help herself, or it was to be expected given her “condition”. I was furious, believing they were giving Jo the wrong impression of school, and allowing her to perform at a level beneath herself. This was what I believed was still going on when I took Jo for her 4 year checkup in November, because far be it for anyone to alleviate my anxieties once the situation rectified itself (Within six weeks, Jo established her boundaries and stopped testing them, apparently.).

Jo’s pediatrician gave me an earful for “allowing” the school district to diagnose my kid without turning to a psychologist to establish the diagnosis instead. “She’s not autistic!” he face contorted in contempt at the word.

“I know!” I explained how concerned I was that the school district was harming my kid, but that I had no way of knowing where to turn, what alternatives there were. “I don’t want to take my kid to someone whose salary is dependent upon a positive diagnosis!”

“No! Not all of them are like that!” The entirety of this appointment had us speaking in elevated voices and Jo had her hands on her ears.

He acknowledged that she does have delays, because she needs to be talking more than she is, and her social interaction is more fearful and withdrawn than typical. Did I mention I refused to order my own food at a restaurant until I as ten or twelve years old? There’s nothing wrong with my kid.

He referred us to the UT Health Science Center, we established an appointment in February. And I requested a conference with Jo’s teacher to get a better feel for how she was handling the classroom. We spent that meeting speaking in elevated tones because she was on the defensive for not informing me that everything’s a-ok  at this point (but not a-ok enough, because Jo still needs her help, says the woman whose salary is dependent upon my child having a label.). She’s been in the field 25 years apparently, granting me her credentials in an attempt to establish her authority on the subject (the subject being my kid). These programs for kids with autism, she says, were put into place because “parents demanded it” –ye old bandwagon technique. I am not persuaded by the proverbial parents of severely disabled kids requiring that that state treat them like human beings.

Because my kid is not disabled, as I’m sure the psychologist-specialist-professor, at the UTHSC would agree.

But come February, the wonderful daycare Jo was attending all year and enjoyed, abruptly closed due to a dispute with the landlord. This happened two weeks before the assessment with the psychologist. Her adjustment to the new daycare, with a spineless, good-for-nothing “teacher” was less than spectacular. Jo tested her boundaries yet again. There was a lot of hitting of the teacher and the kids and this woman wouldn’t do a damn thing about it except whine to me or Jo’s stepmom, like we could do anything. We weren’t there!

Naturally, the hitting episodes came up with the psychologist. Jo demonstrated her behavior during the assessment and Stepmom intervened in the next room while I discussed with the psychologist the minute details of Jo’s life. Her “aggressive tendencies” then colored the final report and instead of finding a non-diagnosis of “your kid’s just fine, here are some parenting classes to teach yall how to get her ready for kindergarten”, we were told she needed aggressive, intensive therapy so children and adults wouldn’t be “afraid of her.”

In the midst of this, the hitting finally stopped at the daycare only after I finally “Lost It” on my kid. I went to get her from the playground and see she’s holding the back of a boy’s shirt collar. I corrected her and told her to apologize, when suddenly I’m swarmed by the kids. “Jo hit me!” “She hit me too!” “She hit me twice!” While bewildered, I also see a little boy give my daughter a hug in forgiveness. They aren’t mad at her, or afraid of her, but they reacted when they saw I actually intervene when her behavior pushes the line. Apparently, that’s what they want from the adults they see all day doing nothing about it.

We walked around to the classroom to get her back pack and Ms. Spineless was cleaning up, “Jo hit me again.” The children outside sounded more authoritative than this woman. I was so frustrated with her ineptitude. Angry. I wanted to hit her too.

That part of your brain that activates to protect you from your own feelings was in full force inside my head. My brain felt kind of fuzzy as I led Jo out to the car to take her home. I started talking wondering how much of what I said would register. “You can’t be hitting kids. You can’t be hitting your teacher…” I started crying and I let myself cry because I knew Jo had never seen me cry about her.

She had never seen me cry before, so she thought it was funny, like I was playing a game. I turned around in the car to see her smiling and I lost it. The fuzziness of my brain evaporated as I made the decision to scream as much as I could. Anything to get it through to her that her behavior was not tolerated. To get it through to her that I had my limits, my boundaries, too.

By the time we got home, we were both sobbing. I tearfully told the story to my aunt while Jo watched, terribly concerned and sad. “I’m all right? I’m all right?” she gets her pronouns backwards and I’d never heard her say that phrase to ask “Are you all right?” She knew something was terribly wrong with Mommy, and we could tell she knew her behavior caused it.

So we got passed that bump in the road, and I think we’re finally at a point to build on what we’ve been through, but now I have Jo’s stepmom marching full steam ahead (well-intentioned, I am glad she’s in my daughter’s life), looking for ways to fund an Adaptive Behavioral Analysis specialist. My insurance won’t cover it because the company is “self-funded” and can do whatever they want, which is fine with me. But now I have to convince Stepmom that applying for social security is not necessary (I already mentioned it, but she interpreted my email as a sign I’m just exhausted by the chemo). Personally, I do not feel another adjustment is in Jo’s best interest, even if we hate the daycare teacher. I do not feel being in an one-on-one environment devoid of neurotypical children will benefit her at all if modeling typical behavior and trying new things  is what she needs to be doing—and what she's already doing.

I went into this process with only one question: “how do I get my kid ready for the kindergarten of 2014?” to be told absurdities because the state has no patience for actual children. While her pediatrician agreed with me on most points, he guided us further down the rabbit hole because he was pissed that I couldn’t get my kid to stand to have her height measured. And while the psychologist’s salary is not “dependent” upon a positive diagnosis, she is one knob within the mechanism that is expanding the label of ASD, stoking the anxieties of parents to send their kids for therapies they do not need.

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Comment by JMac1949 Today on April 28, 2013 at 1:04pm

"... one knob within the mechanism that is expanding the label of ASD, stoking the anxieties of parents to send their kids for therapies they do not need."  Got a threeand a half year old grandson who's coming out of daycare and heading into pre-kindergarten.  He's started hitting recently always with a giggle and a laugh... I told him, "Hey little dude, don't hit unless you're willing to get hit back.  You try that crap on some five year old at school and they might knock your cute little butt in the dirt."

So far he hasn't quite got the message, but I'm figuring that it should only take a week or so before it happens.  Most kid's (at least those who aren't sociopaths) have to figure that stuff out on their own and you'd think that people with degrees could comprehend that, but nooooo... there's not any money to be made with that kind of "therapy."  R&L for the absurdity of it all.

Comment by Deborah Young on April 28, 2013 at 4:35pm

It is actually illegal for the school district to diagnose children with ADHD or anything else. The diagnosis must come from a doctor or psychiatrist. When my husbands son was in 2nd grade, they "diagnosed" him with ADD and told Ken and his wife to put him on ritalin. They said, no, we handle him at home and your job is to handle him at school and we're not medicating his behavior which is that of a B-O-Y. Public [Government]  schools are inherently intolerant of boys because they can't sit still. Hold on tight. Remember she is just like you were and try not to go street rat crazy with the lack of flexibility anymore that our children get to be individuals and not lab rats.

Comment by Patrick Frank on April 28, 2013 at 4:57pm

Deborah is right, illegal. So easy to attach labels rather than look deeper. Psychiatry is far too often misused. Witness the so-called experts on TV blathering on and on about sociopathy, often alabel misapplied or misunderstood.

Comment by Jewellya on April 28, 2013 at 5:03pm

illegal-schmelegal. they choose their words carefully then "recommend" seeking another opinion. I happen to have the ability to do so, which many parents don't. but seeking the opinion of "there's nothing wrong" and getting the response "kids will be afraid of her if she keeps this up, you need the most extensive treatment available" is enough to keep any parent away from the shrink.

Comment by Patrick Frank on April 28, 2013 at 5:54pm

Some do choose their words carefully, some don't. Some are not cognizant of school law, or don't care. Others are very cognizant. Ultimately, the parent must take responsibility for seeking the best eval and care possible, regardless of what others may say or do.

Comment by alsoknownas on April 29, 2013 at 10:36am

My wife has had a nearly 40 year career , more than half in public school working with autistic children and those with Down Syndrome.

She is an angel.

I'm not.

 ...and when I see people lump all public school teachers into one group and put the blame on them...( my wife's genetics have never been linked to a single one of her students), I become annoyed and defensive.

When my wife comes home with deep scratches, bruises from kicks and punches and bite marks, I don't blame her for not handling the children properly at school.

So any of you who intimated such ought to to reconsider how you express yourself.

Comment by Patrick Frank on April 29, 2013 at 11:01am

It is often administrators who try to diagnosis inappropriately, in my experience. I mean as opposed to teachers. Many of both groups do a good job of not playing psychiatrist. Based on my experience as a counselor and teacher "in the system."

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