EMERGENCE

You didn’t want to have your child in my classroom.

It meant your son or daughter had problems. Major problems, the kind that couldn’t be resolved with a whispered conversation or a note to the teacher, the kind that meant your kid could not function in a regular preschool setting. Diagnosis was often so fresh that the parents had a blasted look when they dragged their children through the door. They didn’t want to be in Room 1A, the first stop on the elementary school campus while the neurotypical children skipped ahead of their parents down the corridor to 4A and 4B.

There were several such classrooms around the district, ranging from (unofficial titles) A Spot of Extra Help to Acronym Party to Abandon All Hope. My school sported two of these rooms. A Spot of Extra Help was in another building, a tidy classroom whose walls were covered in mostly recognizable art. Its little fellows were an industrious lot, and their teacher’s voice was a noisy non-stop soundtrack over their heads correcting transgressions and offering directions. Stop throwing Play-Doh. No, it’s M-M-Monday. Get in line for the library! Having your child in A Spot of Extra Help was not the slug to the gut that the other rooms were. It meant your son had a mild learning disability, your daughter some hearing loss, issues that could be dealt with and would not hold them back from one day being in a regular room without too much assistance, if any. It was not a life sentence, just a bump on the road that promised smoother ground ahead.

I was a one-on-one aide in 1A’s Acronym Party in the morning for a boy with severe autism. In the afternoon, I worked in a day-care and home setting with a boy from another school’s Acronym Party class who had somehow gotten a diagnosis of autism though he displayed none of the symptoms. (And whose mother confessed that she simply carted him from doctor to doctor until she got the diagnosis she wanted.) The students of A Spot of Extra Help were going on to regular education; the students of Abandon All Hope were never going to move from special education nor be independent as adults. Their issues were simply too extreme, and when I volunteered in that room, I was overcome by how quiet it was. They were children who had never and would never speak a word. Here there was no frantic rush to catch up those developmental delays, no heavy press for therapies either recognized or fringe, because these were children who were not taking some winding detour through the country roads of childhood but had been born to a dead end. The teacher and aides of that room held space with them, pushing them gently on swings, whispering silly songs to see if they could evoke a smile. All that existed was that moment, the swing, the song, the smile, and that was all that ever would. One boy grabbed my head in his hands and tipped his forehead to mine, searching my eyes deeply for a long, quiet minute, and he smiled at whatever it was he found there. Abandon All Hope was a place of acceptance of a hard truth, and somehow, it was beautiful. When you cannot move forward, you focus on making your present as peaceful as it can be.

I had wanted to work in Abandon All Hope, but I was placed in Acronym Party with a boy who belonged in Abandon All Hope anyway. Acronym Party was a precipice, students tumbling over every June into regular education or special depending on the height, width, and length of their acronyms. Here the air was desperate (Should we try a special diet? Why can’t he get speech therapy every day? We’re thinking about chelation. Have you heard of equine therapy? Facilitated communication?) because the stakes were so high and the outcome so uncertain. I plugged away in ABA-style with my misplaced morning boy, who showed no improvement and whose autism was so devastating in its scope that ABA was ridiculous. He was too busy punching his head, a keening sound coming from his throat and his eyes dizzy like the table at which we sat was a rollercoaster. Voices were the ultimate agitation to him, and he had been placed in a classroom with ten other children and three to six adults including a teacher who believed that speaking to him more would cure his autism. He needed the peaceful country of Abandon All Hope to make any headway of which he was capable, but he had been placed in a traffic jam in the middle of a busy city.

My afternoon Acronym Party boy was wholly different territory, and his diagnosis of autism was puzzling. I don’t know why his mother wanted that diagnosis, or how the doctor justified assigning it, but he had it. And the district provided him with an afternoon aide in response. Usually we went to the park or his home, and once a week, I met him at the home of an Abandon All Hope boy with whom a friend of mine was working as his one-on-one aide. His diagnosis was correct, and he was even more affected by his autism than my tortured, voice-aggravated, head-punching morning boy. We were there ostensibly to play, but he couldn’t. Pushing a video of Barney into his bedroom VCR, he watched five seconds of it and then hit eject and pushed it in again. He could do this for hours. We will call him Parker, even though this is obviously not his real name.

Five-year-old Parker had failed to reach every educational goal placed in front of him, and slipped untouched through the nets of traditional therapies. Now he was in an Abandon All Hope class. The bridge of his nose was raw from the long days he spent drawing a string over it. Nonverbal, he had one sound, and that was just a repetitive uuuuhhhh-uuuuhhhh-uuuuhhhh without any variation. Not potty-trained, making no eye contact, walking about on tiptoes, he used our hands as if he found them hanging disembodied throughout the house. Those hands were tools put there solely to open the refrigerator and retrieve juice, unattached to any larger purpose, and he was no more partial to whose hands they were than you are for a particular spoon for your cereal. A spoon is a spoon, a hand is a hand, and the Barney tape went in and out, in and out of his VCR. Uuuuhhhh-uuuuhhhh-uuuuuhhhh. He did not interact in any way with his aide, or with me, with his siblings or with my five-year-old charge. When he looked at anything, his favorite string or a car, he did it through his peripheral vision. You could not play with Parker, because he did not understand any verbal language, nor did he understand the body language for chase.

But we tried, knowing that it wouldn’t make a difference. It is hard not to try. He was a handsome little boy, and were you to see him on the sidewalk or in a picture, you would not know how very different he is from other children his age. It is so hard to let go of the hope that something will bring him from his world into this one. I am not a parent of an autistic child, or any children at all, and I wonder how long it would take me to let go in that position. I don’t know that I could. Likely I would keep searching the Internet for alternatives to acceptance, and therapies that seemed laughable before might be worth a second look because the alternative is so damn hard. Chelation? Sure. What do we have to lose but our bank account? Horses? Okay. Maybe he’ll connect in that way. Facilitated communication? Vitamins? Let’s give it a go. Floortime? Ugh. But okay. ABA certainly wasn’t helping a small number of the children I worked with, and it was held up as the gold standard for everyone despite the fact that it was failing some of them. I would keep seeking, keep trying, and keep hoping until that last door closed in my face.

When I began in the classroom, my supervisor told me never to encourage a parent who was looking into alternative therapies. They don’t work, they’re a waste of money, and were those parents not so desperate, they would see the ridiculousness in what they were aiming to try. That was hard to do, to have nervous parents telling me they were going to try this or that, showing me an article about another child it had worked for, and what did I think? I did as my supervisor told me, but I felt like a heel. In those parents’ shoes, especially fresh off the diagnosis, I’d be doing the same thing. The teacher in my Acronym Party classroom willfully disobeyed any instructions given to her by parents about their experiments, because she felt the experiments were foolish. They were not worth her effort.

Honestly, we had no idea what works and what doesn’t, and I don’t think you’re a desperate chump to try. I was just my supervisor’s parrot. And despite being instructed that nothing would work, and everything was a waste of time, Parker had a slight improvement off an alternative diet therapy right before my eyes. I didn’t know that his mother was trying it, and I reported to a playgroup one afternoon as always. While my friend entertained my student, I went after hers in the front yard. He had climbed into a ditch. I clambered in across from Parker, determined just to hold space and sit with him for awhile, and my foot let loose a noisy avalanche of dirt clods and tiny rocks to skitter to the bottom.

He looked at me in astonishment.

Not from his peripheral vision, and not to some body part of mine that he needed, but directly at me. I was so startled to be seen that I said, “Hi!” and looked right back at him, both of us equally surprised to see one another in the settling dust. The string was forgotten at his side. His shoe was off, and I took his foot to put it back on. He jerked out my grasp. I took his foot again and he broke out in a half-smile and jerked it away. We did this one more time, and then he floated back into his world and picked up the string. I took him back to the house and spluttered at his aide, who said that his mother and grandmother had started him on the GFCF diet.

It was not a miraculous recovery. He did not spill out in words and play with the other child that afternoon, but it had only been two days since he started, and already he was making eye contact and understanding a simple game of catch-the-foot. The relentless uuuuhhhh-uuuhhhh-uuuuhhhh that made his mother crazy was gone. All of this had happened in two days, when his last accomplishment had been walking years before. Parker was still severely autistic, but he was suddenly, briefly present with us. And that was miraculous in and of itself.

His aide reported similar small gains, his Abandon All Hope teacher was excited, my supervisor wrote it off as a coincidence, and I returned to his home next week eager to see what new changes there might be, if any. But his mother had found the diet change too cumbersome and dropped it. His grandmother pressed on with the elimination of milk since it had dramatically helped his constantly runny nose, but gluten was back on the menu. Parker retreated into fog without a backwards glance, and he was gone. Uuuuhhh-uuuuhhh-uuuhhh, the string over the bridge of his nose, the Barney tape in and out, in and out, in and out.

For years, I have gone back and forth on writing this essay. It was well pounded into our heads that all of these alternative therapies were quackery, and I never wanted to be labeled a quack. I don’t know that it will work with every child or even some of them, and Parker certainly wasn’t transformed into a neurotypical boy, or even one who could have moved up to my Acronym Party class, let alone A Spot of Extra Help or regular ed. But he was suddenly here in this world, where no one had been before. The only change in his life had been the types of food he was eating.

I no longer teach, but if I did, I would no longer parrot my supervisor’s scoff to parents who want to give GFCF a try for their child. It would be the first thing I’d try for mine.

6 Comments (+add yours?)

  1. Sigi
    Oct 03, 2012 @ 01:53:21

    Wow. How terribly sad that the mother couldn’t or wouldn’t see that her child’s improvement was worth the effort of persisting with a dietary change. She must have been terribly weary of … everything.

    Reply

    • Macaulay C. Hunter
      Oct 03, 2012 @ 07:37:55

      Sadly, she wasn’t terribly weary. Parker’s aide said that most of the childcare was done for this woman by her own parents while she hung out with friends and went on dates. She wanted magic and convenience. And since the diet was inconvenient and didn’t result in magic . . .

      Everyone was so disappointed, especially his grandparents and aide. The gains were small, making eye contact and playing a little game, but he had never DONE these things before, and they were triumphs for him.

      Reply

  2. Natalia Orlovsky
    Oct 03, 2012 @ 09:41:45

    I can’t help but hope that things improved for Parker down the road. How heart-breaking.

    Reply

    • Macaulay C. Hunter
      Oct 03, 2012 @ 10:26:00

      The last I heard of him was that he had been put on an anti-psychotic medication. One of the side effects was extreme drowsiness, and it knocked him out entirely. He slept through school every day. :(

      Reply

  3. Sigi
    Oct 04, 2012 @ 04:20:24

    Ack. Now I iz more sad. :-(
    That job must have been so challenging. I gave up on teacher training quite early, when I realised I just couldn’t hack it as a career – and that was with “normal” kids! You must have the patience of a saint.

    Reply

  4. Candy
    May 14, 2013 @ 05:40:47

    Thanks for sharing this story, GP. So sad to read his mother thought it was too much trouble :( . One of my sons has Asperger’s (a ‘mild’ version of autism, and he has a mild version of Asperger’s and he has a high IQ) and we have recently put him on GFCF diet. His behaviour was already quite ok (he didn’t eat that much gluten and casein the past year anyway) but we are now noticing a dramatic change to the acne on his face. He is now almost 13 years and he already had severe acne since about 1 year; after 3 weeks of GFCF it is almost all gone!

    Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Copyrightify!

All that stuff I wrote on this blog thing here? That's right! I'm copyrighting it. Watch me. Copyright 2012-2014 Macaulay C. Hunter.
%d bloggers like this: