Saturday, September 03, 2005

A Journey Marked By Milestones

Last summer I received a postcard in the mail from a neighborhood church nursery school I never knew existed. The card said there were only a few openings left and that I should call soon to reserve a spot for September. I showed the card to my husband and asked him if I should enroll our youngest son. He said something like, “Sure, why not? Give them a call.” I was pleasantly surprised, because he had previously referred to church schools as “rinky dinky day schools,” without elaboration. I can venture a guess as to why he would call them that. He went to one as a young boy, and he told me once that he remembered marching around singing “Onward Christian Soldiers” and hating every minute of it. His parents were not particularly religious, and they still aren’t. His mom is Jewish. I think there were just too many contradictions for him, and it didn’t take him long to reject religion, church, God, and rinky dinky day schools. Perhaps he was beginning to soften. There was a time when he ruled out parochial school for our kids.

I, however, never ruled them out. By the time my first son was born, I had already come back to the church after many years of having fallen away from it and believing I was an atheist. The idea of sending my youngest son to a parochial school definitely appealed to me last summer. We had no church to call home anymore. It had been far too difficult to find the right place. The only church I could find that had a “special needs church” during the regular service was rather far from home and somewhat inappropriate for my middle son, who is eleven years old and autistic. He liked it and all, especially the guy who played guitar for the kids and who was probably also autistic (we talked one day), but I thought it looked more like a “multi-handicapped room” and I wasn’t sure if this was the right setting for him. Most or all of the other children were nonverbal. Some were in wheel chairs, and one child had a helmet. Had I pushed for him to be in regular “junior church,” I would have needed to provide my own aide. I had no access to wrap-around services because I let our account with the county expire. When my youngest son started showing signs of autism, the thought of dragging the kids to church with no real supports in place became more than I could take, so we all stopped going.

I wonder if I have just been making excuses for not going to church, or if the issues I have with church and autism are legitimate. I was roundly chastised recently by a church-going friend who basically accused me and others in my situation of being “self-deluded.” She said it was my responsibility to keep looking until I found the right church, and that I shouldn’t imply that all churches are hostile towards autistics just because I have had a few bad experiences. I had had some pretty awful experiences in the past with my middle son and the way he was treated at the church that baptised him. The thing that bothers me is the nagging feeling that she could be right. I have gotten tired of searching, tired of trying to explain my situation, tired of going to church with just my two kids and not the entire family. My oldest son doesn’t want to go anymore for a whole host of reasons. Perhaps church fatigue has made me lazy and fatalistic. I don’t know. But I still play out this fantasy in my mind from time to time:

I’m driving around the neighborhood. I turn a corner, and right in front of me lies a church with a gigantic white banner draped across the front of it. In huge red letters, the banner reads:
“WE WANT YOUR AUTISTIC CHILDREN!”

Feeling guilty about not going to church while still trying to raise up my sons in the “nurture and admonition of the Lord,” I jumped at the opportunity to get my son into this nursery school. I did not do my homework; maybe I saw the postcard as a “sign” that this was the right place. I have gone on impulse and instinct throughout my life, and this time was no different. It could have been utter burnout that caused me to jump into this school with both feet, or it could have been that I was pinning my hopes on this church—finally—being the one church that would overlook one of my children’s developmental delays and treat my son as a person, not a walking diagnosis.

I knew that my son was probably autistic when I first made the decision to call up the school, but I was halfway between being in denial about his autism and trying to cover it up. I called up the director and made an appointment to see the school. She seemed nice enough, and the classrooms were big and clean with plenty of toys.

What could be bad?

Things began to unravel before school even began. The director called me up shortly before the first day of school and said she needed to shift some things around based on birthdays and class numbers.

“Would it be alright to put him in the 3’s class?”

“Sure,” I said, as I was completely distracted and overloaded, trying to stir something in a pot, talk on the phone, and handle being literally pulled in different directions by my kids. I did not comprehend at the time that he was going to be the youngest child in his new class. Needless to say, this made his delays that much more painfully obvious. When I came up for an orientation meeting with the teachers one night before the first day of school, I really started to squirm. I had this sick feeling that this was all going to blow up in my face. The new teacher had a heavy Scottish accent, so heavy that I could barely understand a word she was saying. If I couldn’t understand her, how was my son going to be able to? Her assistant didn’t smile; she made me nervous. Then at the meeting, the head teacher dropped the A-bomb. She had worked with autistic children before taking this new position.

Okay, where was I going to hide? How would I slink out of there? She would have him pegged within 30 seconds of meeting him.

My heart started racing, but I kept my cool outwardly. My face is usually flat most of the time anyway, unless I am extremely angry or extremely happy. So in my natural poker face, I raised my hand and asked whether I could communicate with her by email, and she said I could. I figured if he ended up staying in the school, we would be communicating quite a bit.

The first day was a disaster. I didn’t realize it at the time, but he had been suffering from seasonal allergies. He was cranky, his nose was itchy, and he had no way of telling me how he felt. There was a tag on the back of his brand new Blues Clues shirt, and it wasn’t until we got home that I realized the tag had actually been irritating his neck, because his neck was reddish in that area. He cried and fussed most of the time that first day. He tried to pick off and eat the staples on the puppet theater, and I was becoming frantic. If I were to leave him in that classroom, surely he would end up in the emergency room. Never again did I want to see my boy in the ER with a diagnosis of “ingestion of foreign body.” The last time was a piece of metallic confetti from a birthday party.

I cannot possibly let this happen to him again. I have to do something.

I was sitting there watching him all the while knowing that this class was wrong for him. The other kids were all talking, and most if not all were potty trained. There were kids in that class who were close to four years old. He wasn’t even three yet! He wanted to interact with a little girl, but he just knocked her down on her rear end because he couldn’t tell her his name or say, “Hey, do you want to play?” She didn’t even cry or seem to care, but her mom told him, "Don't do that," right in front of my face. I hate when parents scold my kids right in front of me.

That afternoon I called up the director and told her this was not the right class for him. I wanted him in the 2’s. She decided to observe him in the 3’s while I sat in the 2’s by myself, and then we would switch. He would go into the 2’s room with her, while I sat in the 3’s. This sounded like a good plan. I went into the 2’s room and sat watching the other kids. Each one came in and seemed to know just what to do. Some chose the Play-Doh station, and I marveled at how none of them wanted to taste it. Some of the girls went over to the pretend table and played tea party. Nobody cried, climbed, or screeched, and nobody went on a treasure hunt for staples. I started feeling rather crestfallen, but I continued to observe and chat a little bit with the teachers, trying to prepare them for my son and his “issues.” At one point, I looked up and noticed a small sign on the wall, well above eye level, practically touching the ceiling. It was as though the sign was never intended to be read. It said:

“Childhood is a journey, not a race.”

I agreed with that and felt encouraged by it. Maybe this was the school’s philosophy, too. Maybe the director would be progressive and figure out a way to make this work. As I sat there thinking about the words on the sign above me, I could hear my son making loud noises from the other room. The rooms for the 2’s and 3’s were separated by swinging doors. I had just noticed that.

Why hadn’t I noticed that before? Come to think of it, there are swinging doors on three sides of this room. Did that little girl just go into the 3’s room? Didn’t anyone just see that happen? Not a good sign.

From the other side of those swinging doors, my son was sounding very much like a pterodactyl: you couldn’t quite tell if he was happy, upset, or angry. It was a loud, squawking sound. It seemed louder and more unusual than anything I had heard at home. The director summoned me to switch rooms, and I walked into the 3’s, again sitting alone watching other people’s children, feeling emotionally naked and depressed. I sat there and watched all these 3’s in circle time and craft time.

Why am I sitting here observing a class my son will never be in?

I dutifully went through the charade of observing this class, because I was told I should do that. This is the story of my life: Be dutiful, think later, then rebel. I was only up to the dutiful part so far. Why didn’t I just tell her, “This is entirely unnecessary. I already observed him in this class, and I can tell you that it is not appropriate for him”? As I sat there feeling uncomfortable, hearing his squawking coming from the 2’s, dreading the director’s verdict, and watching all these other children doing the preschool thing, my eyes started filling up—but I did manage not to cry. That’s another thing I hate: crying in front of total strangers. I started to cry because I was not where I am today in my thoughts about autism. I was midway between seeing autism as a disease and autism as a difference. Autism was more like a family secret that I had hoped nobody would notice this time around.

The assistant teacher came over to me and asked me if everything was alright, and of course I lied and said I was fine and just observing the class. She was the one who asked me the day before if my son was able to respond to his own name. Not only did he not recognize his name on the name tag she held out for him, but he didn’t even turn his head when she called his name. He wouldn’t look at her. He wanted to get the Mega Blocks out so he could put them in rainbow order and then toss them behind his back, one by one, not even looking to see where they landed. Had I never complained about this class, it would have taken the teachers only a day to have him pegged as autistic. Maybe I was running from that, trying to buy him more time by putting him in the 2’s. It didn’t work.

The director had finished her observation, and she called me to come down to her office along with my son. I didn’t say anything as we walked down the stairs. I wasn’t positive what she was going to say, because the squawking had diminished considerably when he went into the 2’s class, but I couldn’t see what he was doing in there either. She sat down and told me she had some “concerns.” I pretended not to know what she was going to say. She then showed me the notes she had taken while observing him in both classes. I remember that there were six things she jotted down. I think they were:

Eye contact
Pacing/wandering
Loud, calling-out sounds
Rocking on feet
Play skills
Speech

She noted that he was able to respond verbally to some questions, but that his overall development was very delayed, at least by a year in some areas. I wish she had stopped there, but then she started whipping out developmental charts for 2 year olds and 3 year olds. I thought that was kind of presumptuous. She seemed like an armchair diagnostician, and I didn’t like it. Her charts reminded me of the Denver Prescreening Developmental Questionnaire that I had to fill out at the pediatrician’s office at every well-baby visit. It is a scale to chart developmental milestones and screen for children who are falling behind. After she said she thought he should be formally evaluated by the county, I just said:

“Are you going to kick him out?”

I stared at her while she tried to gather her thoughts together. I wanted to catch her off-guard and see how she would respond. She quickly denied that she would ever do that, and she assured me that he would be fine in the 2’s. I became strangely defiant at this point in the conversation. For some reason, I didn’t want her to know that I already knew what she was going to say. I didn’t want to tell her that I was already aware of his delays, and that I had suspected he was on the autistic spectrum for quite some time. I wanted to see what she was going to say, how she was going to say it, and what she was actually going to do. I thanked her and took my son upstairs and out to the car. As far as I knew, he was going to stay in the 2’s, and I was going to go along—dutifully, and against every fiber in my being—with the plan to have him formally evaluated by the county, just so that they would not kick him out. Years ago, my middle son had been kicked out of so many classes and schools; I didn’t want this to happen to my little guy. But an evaluation never ended up happening anyway.

My son attended one half-day of school in the 2’s. I was late picking him up, and when I entered the room he was the only child there. He was sitting on a rocking horse, rocking and smiling. He greeted me with those gorgeous eyes, and I thought he seemed happy. I couldn’t figure out, though, why he was the only kid in the room. The two teachers mumbled something about early pick-up, which nobody had told me about. Something wasn’t right. They were just looking at me, strangely, as though I had food on my face or an unbuttoned shirt. It seemed like they were trying to be polite by not saying anything to me at all, not even anything to my son.

Not long after I got home, the director called me to say that my son could not attend the school without an aide. She said the teachers complained that he kept getting out of the room—the room with swinging doors on three sides. I would have to pay for the aide out of my own pocket until the county could set up an on-site evaluation and pay for someone to shadow him. I became angry while talking to her, but I stuffed it.

Who would put a group of two-year-olds in a classroom that did not have proper doors?

This was her first year as a director, but I considered this a major oversight. I said, “He was probably just looking for me,” but later I started doing a lot of thinking, and I was getting madder. I wondered why the rooms for the four- and five-year-olds had a single door with a door knob, but the classrooms that really needed doors didn’t have them. Two other kids walked out of the 2’s room in the short time I was there observing the classrooms.

Were they going to need a shadow, too? No, of course not. They were just “active,” not autistic.

That’s when I realized why the teachers were staring at me and not saying anything. They had been debriefed.

Toward the end of this phone conversation, I didn’t bother to ask the director for time to think about what I wanted to do. I just told her that getting an aide would not be necessary, because I was withdrawing my son from their school. She said she was sorry to hear that. I needed to go back to the school to pick up his things, and so I had the opportunity to talk to her again. We were walking down the hallway, and even though the word “autism” had never come up in any of our conversations, she casually mentioned that she had a friend who wrote a book about raising her autistic son.

Oh, I get it. She is an expert on autism because she knows a woman who wrote a book about it.

I quipped, “Sure, I’ll read it in my spare time,” and she braced at my bluntness. I knew I had probably offended her at that point, but it was too late and I couldn’t take it back. I decided that there was just no point faking it anymore with her, so I turned to her and said:

“Look. I know all about autism. My middle son is autistic. I am a veteran.”

It took her a moment to get her composure. She was probably trying to figure out why I hadn't just told her all this from the beginning. As I was leaving, she told me her friend’s name and the title of the book, but I could not retain the information because I was too busy thinking. I was trying to process this school, this director, and the sign upon the wall.

“Childhood is a journey, not a race.”

My oldest son’s principal was fond of slapping feel-good messages and other platitudes all over the walls of his old elementary school. By fifth grade, my son became embarrassed and irritated by these corny posters. He felt it was an insult to everyone’s intelligence—not just the kids—and he hated how this principle seemed to be trying too hard to turn his plain old school into a blue ribbon one. Thankfully, my youngest son was too young to read, understand, and ultimately see through the hypocrisy of this sign on the wall, but I was left asking myself this question:

What kind of journey is childhood according to most educators?

I think the journey they are talking about does not include children who take a circuitous route or walk too slow. It is a journey that follows a straight path marked by milestones—developmental milestones—carved in stone and embedded deeply in the ground. I don’t believe that most educators truly believe that childhood is “a” journey, because if it were any journey it could start anywhere, follow any path, go at any speed, stop at any rest stop, and end in places not necessarily intended or expected.

I found to my surprise, though, that not every church school is a rinky dinky day school. A few months ago, I visited one unlike any I had ever seen or heard about. I didn’t see any kids marching around like tin soldiers, and there were no platitudes posted on the walls. The director and I talked a great deal about the trouble with preschools these days. We discussed how kindergartens are becomingly increasingly academic and rigorous, and how this is having a trickle-down effect on preschools everywhere. Many children cannot keep up, simply because they aren’t ready for all of this structure. Her philosophy is to let kids be kids, let them get messy and explore, and let them work out things among themselves, with gentle guidance from the teachers. To my neighbor, this seemed like glorified babysitting; to me, it seemed like a safe haven for my son. The director knows all about my son and his so-called developmental delays, and she wants him anyway. I did not tell her that he is autistic, because his traits are rather mild and he is still very young, but if she were to ask me I would tell her the truth without shame. It could be that this image I keep having of a giant banner waving over a church no longer has to be some cherished fantasy. I believe there is a church out there that wants my autistic kid, and I just might have found it.

Lisa Jean Collins c 2005

6 Comments:

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At 1:57 AM, Blogger Lisa Jean Collins said...

Oh great. Autism Diva was right. Sheesh.

 
At 4:31 AM, Anonymous Beth said...

LMAO.... I had to laugh out loud at the advert there, lol, what an anticlimax!! (do I mean anticlimax?!)Duh!

I have an internet friend who (I think...)takes her autistic young adult to an African, gospel- type church because, she says, they are far more accomodating. its nice to know there are places that arent so exclusive.

 
At 11:41 AM, Blogger Lisa Jean Collins said...

Hi Beth,

You wrote:

"they are far more accomodating"

Thanks for that observation. This is a topic I started thinking about maybe six months ago, but had forgotten:

How autism is viewed and how autistics are treated across cultures, both in the US (e.g., white versus African-American) and outside the US.

Welcome to my blog.

 
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