Between our two kids we've got apraxia of speech, sensory issues and attention deficit disorder with a side of anxiety, compulsive behaviors and, depending on the week, tics. Things may be complicated in our house but, hey, at least they're unpredictable.

Wednesday, January 25, 2006

Frustrations of a First Grader's Mom

I have always liked – really liked – Max’s first grade teacher. A few days before the first day of school back in the fall, I went to meet with Mrs. G., to fill her in on Max. Basically, I painted a worse case scenario.

Because Max’s IEP is only for speech, I wanted to make sure Mrs. G. was aware of Max’s other issues – ADHD, sensory issues, compulsive behaviors, occasional tics and a perfectionistic streak that often renders him incapable of doing his work – should the need arise for special accommodations to be made. I had no idea what – if anything – Max might need, as he did very well in kindergarten the year before. Max’s schedule then was three full days and two half days. And I could tell from the work he brought home from his morning class (perfect) and afternoon class (riddled with errors) that he ran out of steam toward the end of the day. Now that he was starting first grade, I wasn’t sure how five full days would affect him. And rather than wait for him to start struggling, I wanted to head it off at the pass.

She appreciated my honesty and I was grateful to have been so well received. She told me about some of the things she does in her class – for all the students – to help them do their best work: morning stretches, walks around the classroom between lessons and teaching the kids to use pressure points on their ears to “wake up their brains,” as Max would soon describe to me. I left this initial meeting feeling Max was in wonderful hands.

In all these months, whenever I had a concern that one of Max’s many “issues” were impacting him in the classroom, Mrs. G. simply attributed it to typical first grade stuff. When he tested far below the expected reading level, I explained that kids with apraxia may have trouble learning to read. She said there were other kids in the class who also needed help and she felt strongly that with extra help he would catch up. When I expressed my concern that the errors on Max’s math sheets were due not to a lack of understanding of the work but to his impulsivity and distractibility, she assured me that all the kids will accidentally add their numbers when the problem called for subtraction.

Mrs. G. never saw Max as anyone other than a typical first grader. He followed the rules. He did all his work. He behaved. There were other children in the class who required more attention – two of them, both non-communicative, shared a parapro. Another boy was always out of his seat and required constant redirection. Compared to these children, Max didn’t stand out. I thought this was a good thing.

Until today.

I went to talk with her about the whole sticker/lunch thing, as well as to discuss some ways we could Max more comfortable in the classroom since he had expressed that he becomes restless and agitated. (My words, not his.) When I told Mrs. G. that Max was distraught not to have had lunch with her she let me know that Max wasn’t the only one who earned the lunch but didn’t have it due to a missing sticker. She explained that from an administrative perspective, she couldn’t have a bunch of kids asking her to check her records to see if they had earned a sticker from previous weeks. OK, this I understand.

The lunch is really just an added bonus,” she said. “The real reward is the sticker the kids earn every Friday for showing good behavior all week.”

This I did not understand.

I told her that I was sure Max didn’t see it this way. And when I thought it over later, I felt even more strongly that this made no sense. The kids who behave, especially those for whom it comes easily, I’m sure, fully expect that sticker every Friday. I know I would have were it me. I’d be surprised not to get a sticker.
So of course the lunch is the reward.

She explained that she wanted to kids to learn how to be responsible for their papers and how to stay organized. I agreed these were worthy goals. But I reminded her of Max’s limitations in these areas – he has ADHD, after all. She still couldn’t see why he might need help managing his papers. And then, the clincher:

Well, I’m sure this will help Max try harder next time,” she said.

And this is when I burst into tears.

The only thing Max “learned” from this lesson was that he did the hard part – he kept his act together for ten weeks. He listened, he participated, he sat in his goddamn seat for far longer than any six year old should be expected to, let alone a child with ADHD, and yet, in the end, he was punished.

I felt like a fool for crying and Mrs. G. felt bad. But she still missed all the points I was trying to make.

Then we started talking about helping Max feel less fidgety. I told her I was going to bring in a seat cushion for him that’s designed to give a child sensory input just by moving around in his seat. She knew what I was talking about as the school had the same cushions for some of the other students. It seemed Mrs. G. understood the concept of sensory input and for this I was relieved. But not for long.

They also make these pencil toppers that are supposed to be for fidgeting,” I started to explain. And then I got a look that said, “Uh, I don’t think so.”

I’m sure she was concerned about it being a possible distraction for the other kids. But that’s not what she said. What she did say demonstrated to me that she did not in fact understand sensory input.

Well, I wouldn’t want Max to feel like he was being rewarded,” she said.

Her ignorance stabbed me in the gut.

I’m sure the way she perceived the idea of a fidget toy was that a child would take it out when he was having trouble doing his work and therefore was being “rewarded” for not completing a task. She didn’t understand that for a kid like Max, doing two sides of a math sheet in one sitting is too much. He can’t focus that long. He gets distracted. A fidget toy might actually keep him on track.

And to think I was going to suggest Max keep Starbursts in his desk. No way she would have gone for that.

In a way, I should consider myself lucky. Despite his quirks and challenges, Max has done very well in school. It took getting to the second half of first grade for us to come up against some issues that require our attention and possibly, some accommodations.

Unfortunately, we seem to have come up against a brick wall as well.

Tuesday, January 24, 2006

Mr. T.

I don’t even remember the miniscule offense that got Max all riled up but here’s the exchange that left me puzzled:

Max: I have to say the “t” word.

Me: What’s the “t” word?

Max: You know!!!

Max showed surprising restraint and alas, I never learned what the “t” word was. When I recounted the story to Dave he guessed it was “turd.” If anyone would care to enlighten me, please share.

Wednesday, January 18, 2006

Sticking it to Him

It wasn’t the first time I picked Max up at school in a foul mood. (Him, not me.) But it was the first time I heard him say that he hated his teacher.

This child was screaming and thrashing around and complaining about school – all because he didn’t receive his rightfully earned reward for good behavior.

Let me explain. His teacher has a somewhat involved behavioral system in place. Each child has four popsicle sticks in pockets that hang at the teacher’s desk. When an infraction is committed, the child gets a stick pulled. If there’s more than one infraction in a day, more sticks are pulled. For each one pulled, the child needs to make up for his behavior: if one stick is pulled, he has to apologize in writing; two sticks and he misses part of recess and so on.

If a child manages to go a whole week without pulling a stick, he earns a sticker. The sticker is placed on a chart. Whoever fills the whole chart is rewarded by having lunch, together, with the teacher.

At first I thought this was a good system. But then it occurred to me it was too rigid. If a child pulls just a single stick in a week, he loses the chance to get a sticker. And if he’s missing just one sticker, he doesn’t get to have lunch with the teacher. Seems to me if a child pulls a stick on Monday, there’s little incentive to behave during the rest of the week.

That said, Max has never had a stick pulled. Despite his difficulties, he is a well-behaved child in the classroom. He has always collected his stickers and the first time around he had lunch with his teacher, Mrs. G.

Today was the second lunch with the teacher and I knew for weeks that a sticker was missing. It wasn’t that Max didn’t earn one – it’s just that one never came home. We had a snow day on a Friday some weeks ago and that’s the day she hands out the stickers. When I didn’t see one the following week, I took note of it but didn’t want to bother the teacher by asking where Max’s sticker was. I have more important issues to discuss with her and this didn’t seem like such a big deal.

Until this week, when we found Max’s chart one sticker short. I emailed his teacher explaining that we were missing a sticker and asked her to check her records just to make sure Max didn’t pull a stick. No response. So today, lunch day, I wrote up another note and stuck it to the chart Max was to bring back to school and didn’t give it much more thought. I figured it was a non-issue.

I figured wrong.

Max didn’t have lunch with Mrs. G. and that was why he was so angry and distraught when I picked him up from school. I pulled the behavior chart from his backpack to find a preprinted note attached from the teacher:

If you had outstanding behavior and have earned all of your stickers, I am sorry that you did not collect all of them in order to have lunch with me. If you were absent for some reason, your sticker was placed on your desk with your name on it. Do not wait until it’s time to turn your sticker chart in to let me know that you are missing a sticker for some reason. Please try to collect all of your stickers for your new Outstanding Behavior chart for this marking period and then I will look forward to having lunch together to celebrate your outstanding behavior choices. Sincerely, Mrs. G.

I was shocked. Max had done the hard part; he showed excellent behavior for ten straight weeks. He fought impulses and compulsions and tics. He did great work in spite of his distractibility, hyperactive mind and retrieval problems. But because he wasn’t in possession of a single sticker he wasn’t entitled to the reward?

I can appreciate that the teacher is trying to teach the kids to be responsible for their work and to be organized. That’s great. But she has to realize that these are things that do not come easily for Max. And as far as I was concerned, that had to be taken into account.

Max was truly devastated that afternoon. And I can’t say I was in much better shape myself.

Sunday, January 15, 2006

Max Tries to Share, I Try to Solve

“I’ll try to listen better tomorrow and I hope I will.”
--Max, as I tucked him in at bedtime

It’s difficult to watch your child struggle with something. But “difficult” quickly graduates to “heart-breaking” once your child is aware of that struggle, too.

We vacationed at one of those indoor water parks this weekend and although we had a great time, Max had an especially hard time behaving. That wasn’t a surprise; Max consistently has a harder time focusing, transitioning and cooperating when we travel.

We suffered a weekend of name-calling, yelling and a rather surly attitude. But it was on the car trip home that we were rewarded with a valuable gift – insight.

We had stopped for gas and as I got out of the car to check something in the suitcase, Max became very agitated. He was kicking the seat in front of him and trying not to cry. I can’t recall exactly what he said but it was something along the lines of “needing to do something” and “can’t control it.” What I definitely remember was, “I can’t explain it.”

I thought he might be feeling uncomfortable because of excess energy so I asked if he wanted to get out of the car to do some jumping jacks. He said no. I figured he needed some sensory input to settle himself down and offered him a Starburst and a lollipop, both of which he refused. I suggested he take off his shoes to get more comfortable. He didn’t like any of my ideas.

It was enlightening for Max to try to express the discomfort he was feeling. But it was crushing to hear him tell us that he feels this way at school, too. When I asked what he does when this happens, he said, “nothing;” that he didn’t behave this way at school.

It saddens me to hear that Max has been struggling to keep his act together at school. He’s succeeded – we’ve never had any reports of behavioral issues – but he shouldn’t have to struggle at all.

It’s hard to know what will make him feel better since Max has no idea himself and can’t articulate exactly what he’s feeling. I don’t know if he knows the words “restless” or “fidgety” but I know that’s what he’s feeling.

If he needed it, the school would make accommodations to make him more comfortable. He could be given permission to take a walk down the hall and back. The resource room has a “chill out” corner with beanbag chairs and headphones for those kids who might need a few minutes to regroup during the day. It’s comforting, to me, that the school already has these systems in place.

The trick now is figuring out how to provide that comfort to Max.

Sunday, January 08, 2006

Your Brain, Onstage

There’s a series of performances in New York this month that give new meaning to the expression “theater of the mind.”

NEUROfest is the first-ever theater festival dedicated to neurological conditions. Produced by the Untitled Theater Company #61, performances are running through January 29.

A collection of theater artists from around the country will present work inspired by various neurological conditions, including:
•Amnesia (Korsakov's Syndrome)
•Aphasia
•Autism
•Capgras Syndrome
•Creutzfeldt-Jakob Disease (CJD)
•Dementia
•Meniere’s Disease
•Synesthesia
•Tourette’s Syndrome

In conjunction with the performances, NEUROfest will also host a series of seminars/panel discussions with noted experts.

The festival line-up comprises a diverse selection of contemporary theatrical forms:

•Edgy, solo performance in noted Downtown artist Kirk Wood Bromley’s Syndrome
•Multimedia by real-life neurologist James Jordan in CJD
•Puppetry/object manipulation in The Boy Who Wanted to Be a Robot
•A family musical with Welcome to Tourettaville! (co-written by a 7 year-old with Tourette’s Syndrome)
•A short monologue in The Taste of Blue, set in the realm of the senses
•A full-length opera/theater piece in Tabula Rasa
•An exploration of found texts in Doctors Jane and Alexander
•The Pinter-esque puzzlings of Strangers
•An examination of communication in Linguish, when language isn't an option
•A love story about two men, music, and vertigo in Vestibular
•A family drama about delusion and doppelgangers in Impostors

When I first learned about NEUROfest I thought two things:
1) This is the coolest thing I have ever heard of
2) Can I convince Dave to let me go to New York?

I don’t typically do much promotion on this blog -- that will change once my book is done! -- but I was so enthralled by what these folks are doing that I had to share it with others who might be interested.

As of now, it’s unlikely I’ll be able to go; but if that changes, I’ll report back here with my reviews. If anyone else attends a show, I hope you’ll post your experience here.