Sarah Schneiderwww.kitaiskasandwich.comToday’s evaluation, the second this week, requires us to wake up before God and Jesus to pack up the kids and drive across town in rush-hour traffic. I am missing yet another morning of work. Nobody is sleeping well these days, but last night was particularly bad. The kids have colds, I got less than two hours of sleep, and I am sullen and mean. We are running late. My husband makes a wrong turn, and then another, and then passes the clinic and has to double back. I snap at him and immediately feel ashamed, apologize, and try to smooth it over. The kids pick up on my bad mood and start wailing.
In the last 90 days, M has been evaluated by 20 or 30 different Special Needs Professionals. All of them agree that M has autism, and would benefit from speech therapy, occupational therapy, sensory integration therapy, and ABA. As of this writing, not a single one of the 15 evaluations has resulted in the actual delivery of services to my son.
Today, we are taken to a room with a speech/language pathologist, an occupational therapist, a developmental pediatric specialist, an intern, and a child psychologist. Counting our family, a total of seven adults and two kids. There are three adult-size chairs set up at a table, and two toddler-sized chairs next to a plastic castle in the corner. The adult chairs are all taken. I stand for a while, then squat, then finally sit uncomfortably in one of the toddler chairs so I can nurse L.
I am exhausted and L is sick and cranky, and he squirms and kicks and bites as he nurses. As I try to maneuver him into position in the tiny plastic chair, I roll my eyes and sigh audibly.
The psychologist pipes up for the first time since we walked in the room over an hour ago. “Um, excuse me. I just have to ask. What has been your experience with [our HMO]? I mean, have you been happy with your experience?”
I am confused by her question. “You mean, since M was born?”
“No, in this evaluation process. Because, um -- as a psychologist? I’m really getting a vibe from you. So -- Are you guys just normally -- mellow people? Or do you not want to be here?”
My husband says, deadpan, “I’ve been called mellow before.”
I am still stuck on “do you not want to be here?”
Any parent who has ever been through one of these evaluations will tell you how awful they are. Hearing strangers list all the things that are wrong with your child is the most painful thing you may ever experience. It’s a bomb in your lap, a gut-punch, something that takes months to process. Even though this is the third or fifth or fifteenth time, it still hurts.
But if it is painful to watch other people measure your child and find him lacking, it is worse to be forced to say it yourself, while your child listens. After the second evaluation, I had picked up enough of the jargon to describe M’s “deficits” in the words of his examiners. He doesn’t make “appropriate eye contact” or “spontaneously imitate adult gestures,” and has “difficulty with questions that require a narrative response.” I found they were willing to skip some of the stressful and pointless tests if I could describe my concerns in their terms.
In one of those first tests, M is given some puzzle pieces with pictures of numbered train cars. They are printed on cheap cardboard and are warped and bent by the many children who have preceded him. No matter how hard he tries, the pieces will not lay flat. The tabs poke up at odd angles and refuse to insert in the slots of the adjacent pieces. M tries dozens of times, lining up the train cars in order but unable to get them to link together. I watch his frustration build and finally escalate into a tantrum. The examiner observes, bewildered, “Hmm ... he doesn’t seem to be having much
fun with this, does he? I guess he doesn’t like puzzles?”
The next time, I start the conversation differently. “The majority of his language is scripted and echolalic,” I say. “He doesn’t initiate imaginative play.” I am praised for “doing my research” and “making [their] jobs easier.” But I feel sick to my stomach as I describe my son with these words, while he looks me in the eye with his head tipped to the side, listening.
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“…do you not want to be here?”
I feel like she is calling me on my Bad Attitude, like I am a middle-schooler caught rolling my eyes at my Algebra teacher. I want to respond like that same 7th-grader and tell her to fuck off, but instead I mumble something about wanting a referral for speech therapy and assure her that we do, indeed, want to be here.
I remind myself that she is doing a difficult job, and she is probably underpaid. She is young and inexperienced and Doing Her Best, and I need to Lighten the Fuck Up. She probably thought I was rolling my eyes at her. She has probably never nursed a sick, squirming baby in a chair built for a three-year-old. I try very hard not to hate her.
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I don’t want to be the rude, ungrateful parent with the bad attitude. My mother and sister both work in Special Ed. Their jobs are physically and emotionally exhausting. My sister is bit, kicked, and yelled at every day. She wipes noses and asses, and sometimes inserts catheters. She works full-time, but after paying for her health insurance, she takes home about $700 a month. Her program is under-staffed and under-funded, and she and her co-workers are expected to perform miracles without any of the tools or support or respect they need to do their jobs.
Most of the people I have met in the last couple months at M’s evaluations have been wonderful. They have been intelligent and kind, they have looked me in the eye, and they have had something useful to offer.
A few of them were incompetent, condescending, or insensitive, or just very very inexperienced. They were unable to put themselves into the shoes of the person on the other side of the table. And a couple of them were real assholes.
It is always very tempting to write about the assholes, because they have Done Me Wrong. And because the Wrong was done in a situation in which I was unable to respond without fear of compromising M’s quality of care or eligibility for services, I am left with the intense desire to get in the last word. Everybody thinks of the snappy response -- the one that would have really put that asshole in her place -- ten minutes after leaving the meeting.
But lately I am hyper-aware that I walk into these meetings with a huge chip on my shoulder, and that nobody can measure up to my expectations. And it is quite possible that I am the only asshole here.
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“Scrip-ted and e-cho-la-lic,” M repeats in a whisper, re-enacting the crime moments after the accusation. He rolls the syllables around in his mouth, storing them away for later. I know he doesn’t understand the words yet.
M’s particular brand of autism might have been called Hyperlexia, before the decision to eliminate that diagnosis from the next DSM. My sister suggested I read about Hyperlexia months before we actually called the County for the first evaluation. But the very existence of such an absurd diagnosis -- essentially, Hyperlexics are children with above-average intelligence, who learn the alphabet early, enjoy reading, and have an “abnormal interest” in letters and numbers -- was enough to convince me that M was fine, that this was all a culturally constructed load of crap, and to put off the call for several more months. I learned to read when I was two, and I was never diagnosed with a disorder. We praise children who learn to read slightly ahead of schedule, but pathologize those who learn too early?
Of course, if I had looked past the first couple sentences, I might have begun to think about the repetitive behavior, echolalia, “moderate to severe impairment in social interaction,” anxiety, and intense and often violent tantrums. The truth is, M has many of the characteristics of Hyperlexia.
One thing that sets Hyperlexia apart from other ASDs is the particular type of “impairment” in language development. Although Hyperlexic children exhibit atypical expressive language and have trouble with pragmatics (eye contact, body language, conversational turn-taking, gaining attention before speaking), they generally score very high on tests for receptive language ability. Which means, when you strip away all the jargon, that M understands most of what we say. More than an average two-year-old understands.
It is not until the 15th evaluation that, for the first time, an SLP asks me before we start, “So, how do you feel about talking about him in front of him?” I am so grateful I want to hug her. I am still baffled that none of the preceding 14 evaluators even brought it up. Do they assume that because he is so young, he doesn’t know we’re talking about him? Do they think that because he has an ASD diagnosis that he is also mentally retarded? Does it just not occur to them at all?
Today is not that day with the SLP I wanted to hug. Today we are sitting across a large conference table from a case manager, who is presenting us with a 30-page report detailing the many ways in which M has failed to measure up. Before reading through it, she pauses for a moment to say, apologetically, “So, this IS a deficits-based model. But we do like to start out by pointing out each child’s strengths!”
One of the parent questionnaires had asked us to list things that M liked to do, such as favorite toys or games. Another asked us to list his strengths. I see now that these questions exist so that the parent responses can be regurgitated on the final report, in case the examiners fail to identify any strengths themselves.
On the first page of the evaluation packet, there is a brief list. M’s strengths include “Number books. Playing with his dad. Words/letters. Sense of humor. Playing outdoors. Cars.” I giggle uncontrollably at the bad grammar and the absurdity of it all. “Strengths: Cars.” This report, with its two column-inches devoted to M’s “strengths” and 29 pages listing his “deficits” will become part of his permanent record with the school district.
I read ahead in my copy, and reach the end long before the case manager does. My mind wanders as she continues to read it out loud to us, page by page. I wonder how much of this M is listening to and understanding. I wonder how much he does not understand explicitly but is filing away for future retrieval. I try to hug him tight in my lap. I want to squeeze him hard to shut out the words she is reading. I have heard about kids with ASD who are comforted by tight hugs, or by weighted vests and blankets. I wish desperately that M were one of those kids.
He never has been much of a hugger, though. He squirms off my lap and wanders across the room to dig around in a basket of toys. Maybe I am the only one who needs comfort.
M has an incredible memory. He remembers the Latin names of plants: Borinda angustissima, Coelogyne corymbosa, Shibataea kumasaca. He remembers the words to songs he has heard only once; including songs in languages he does not speak. He remembers the ages, birthdays, and street addresses of the 10 or 15 family members he sees regularly. M’s amazing ability to remember words and numbers is called a “splinter skill” in the lingo of autism diagnosis -- it is considered freakish and not particularly useful by the majority of the professionals who notice it, and is not included in the brief list of “strengths.” I wonder if the words from this 30-page summary of his failures being stored in his brain, to be absorbed later when he is old enough to understand what this all means.
M drags the basket of toys over to us. “You can have one of those,” says the case manager. “You can take one home with you! How about this one?” She chooses for him a lapel pin in the shape of a ribbon with a puzzle design on it. For Autism Awareness month. Leaving aside for a moment the offensiveness of the puzzle logo, I wonder in what world a lapel pin is an appropriate toy for a two-year-old.
She continues to read. She describes more deficits, delays, impairments, disorders, failures to perform various tasks. I stop listening again.
I pull M back on my lap, ignoring his squirms. I need to hold him, whether he wants it or not. I think back to the vibe that the child psychologist picked up from me last week. Could she feel my exhaustion? My anxiety? My distrust of her, of the HMO? My impatience with the evaluation process? The hollow spot I feel in my gut when I think about M’s future?
“Impairments in social interaction,” M whispers. “Stereotypic behavior.” I concentrate all my energy on sending him a vibe. I want to communicate telepathically to him that everything this woman is reading is bullshit. That none of it matters and he should forget every word of it. That I love him more than anything in the world and he is brilliant and beautiful and perfect.
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