Sunday, April 1, 2012

Being Aware

In the past I have always sort of inwardly groaned about "awareness" campaigns of various sorts. Breast Cancer awareness, AIDS awareness, and the like. I always thought, really? Is there anyone out there who isn't aware of AIDS? Do we really have to wear ribbons and fill the news with sad stories on a particular month or day in order for people to be aware of this disease?....That was then.

Today was Palm Sunday. The day we celebrate the triumphal entry of Jesus into Jerusalem. The beginning of Holy Week. When I picked Boo up from his Sunday School class his teacher Mrs. W told me that the children would begin the church service with a palm leaf processional and the parents were invited to join as well. She said they had not practiced this, but had told the children of the plan. As we walked down the hall I showed Boo the stack of palm leaves and asked if he knew what they were and if he knew what they would be doing with them. He had no idea and I was certain he had not been listening in the part of the morning when the plan was introduced. So I made a quick explanation and he seemed very excited by it.

We went to the fellowship time, or "the eating place" as Boo calls it, and had our snacks. Then he went to the nursery room to play with the other kids till it was time for church to begin. When I told him that they were handing out palm leaves he was excited. But then everyone lined up in the back of the church to wait for our processional to begin. This was a process that took several minutes longer than the length of Boo's patience. By the time we were ready to walk up the aisle he was ready to loose it. We made it through just fine and back to our pew without incident. But it didn't take long for me to see that this unexpected change in the church routine had taken its toll on Boo's coping skills. Before long I had a sobbing boy who was nearing meltdown level. I picked him up and carried him out of the sanctuary, down the hall, and sat with him in an armchair and just let him cry it out and tell me how sad he was. It took several minutes to calm him. He was also upset that I had forgotten to bring his backpack with his snacks in it. I decided to take him to the kitchen and allow him a couple extra cookies. I am still worried that this may have set a precedent that will be very difficult to break, but I felt it would be most compassionate to allow him some leeway since we were out of routine and I know how hard that is for him.

We got through the rest of the service without incident and left with a happy boy. He had been given a sticker with a red heart and a cross on it. He likes stickers and likes to put them on his shirt, but after only a minute or two they bother him and he usually removes them and gives them to me. So he took this sticker also and affixed it to the back of my hand. He told me that this is to show that I sinned but God still loves me. I wore it proudly all day!

After church began the countdown to the much anticipated event of the week: H's birthday party! Boo has been preparing for this for days, talking incessantly about Sunday at 1:00. Yesterday he excitedly helped me wrap the gift he had chosen, and carefully wrote out and signed the card, then taped the pinwheel and the card to the gift and placed it on the entryway table. He told everyone in church today, including Pastor, about the party. We arrived and Boo was thrilled to join his friends playing. There seemed to be children everywhere you looked. Classmates and cousins and siblings as far as the eye could see. It was blissful child chaos, running, yelling, laughing, and squealing with delight. Some of the parents dropped off their children and I was assured that it would be fine for me to do the same. I'm glad I opted to stay. I was concerned about Boo's tolerance to the level of noise and disorder. He was already a bit out of sorts after the morning's events. But he took it in stride, smiling joyfully. AND THEN....

Boo spied one of the holy grails of toys in H's room; a race track! It was the coolest thing ever. Four lanes, and something that seemed to be a sort of launching device. He carried it to the living room and asked me how to make it work. I told him that he would need to ask H because I was unfamiliar with the toy. Soon the kids had found four or five track pieces and the room was filled with preschoolers trying to assemble this track. It was the consummate example of too many chiefs. Everyone was working at odds with one another and the track was not coming together looking like anything a car would actually be able to race across. The sections were not level and it just wasn't going together correctly. Boo was becoming more and more distraught and I sensed that he was approaching his limit. He began wailing to the other kids "That's not right! It won't work! You can't do it like that!" I entered the fray trying to calm him, but to no avail. I only made things worse. The other kids were called away to eat lunch and Boo's meltdown escalated. I was on the floor with him trying to talk him down but he would hear none of it. He refused to allow me to even speak to him, throwing himself on the floor, kicking, flailing and screaming. I reasoned, cajoled, cooed, spoke sternly, tried to hold him (at my own peril), and finally told him that if he could not get under control we would have to go home. Several times I threatened to take him and leave and he did NOT want to go but he was unable to calm down. I finally picked him up and held him against me as best I could amid the kicking legs, arched back, and flailing arms. Meanwhile, the adults in the room, family members of the birthday boy whom I had never met, looked on in what appeared to be shock and maybe even horror, though my perception was admittedly altered by my own embarrassment. I walked Boo to the front door and someone kindly opened the door for me. Over my shoulder I said "I think we'll be back." I'm not even sure anyone could hear me.

Outside Boo continued to wail and scream that he did not want to leave the party. I told him that if he wanted to stay he would have to get control of himself. He finally sobbed that he just wanted to go home. I walked him to the car, my own tears welling up in my eyes. As I placed him in his seat I told him that we did not have to go home if he did not want to. He finally calmed down enough to realize that he would rather stay at the party. I told him he could only stay if he stopped throwing a fit. He was still crying, but under control, and he told me "it's just so HARD Mom!" We were finally able to rejoin the party inside. As we entered the front door I saw a couple adults disassembling and removing the race track. They glanced up at me and I read their expressions as condemnation for bad parenting, but I realize now that I was just projecting my own insecurities.

As we were going back in the house, I saw Boo's BFF pull up in the driveway. This thrilled my heart because Boo and Little Britches (as I call him) have such a unique and special bond that I rarely worry when they are together. LB seems to have a calming effect on Boo, and also seems to sense what he needs and intervene as needed. He and his mother, whom I have dubbed "The Boo Whisperer" are truly some of the best blessings God has brought to us. As The Boo Whisperer entered the room where I sat with the other adults, I announced to her that she had just missed one of Boo's epic fits. "Oh really," she asked. I explained that there was a race car track that wouldn't go together correctly and I said "and you know what that does to him!" She replied emphatically "oh yes, I do." What bothered me most about this exchange was that I was completely aware that I was in essence putting on a show for these other adults in the room. I wanted them to understand that my child was not simply a brat and that I was not simply a bad parent. I didn't use the "A" word because I don't want to constantly use his diagnosis to brand him or label him. I don't want him walking around with a blinking neon sign over his head that says "I'm different." And yet, at the same time, I want people not to judge. I want others not to think less of him when he reaches his breaking point and has outbursts, or when he behaves oddly, or when he speaks in a strange, repetitive, unnatural way. I don't want other kids to steer clear of him. I want the same things for him that every parent wants for every child. Understanding, love, and acceptance.

But in order for that to happen, the population at large needs to have an awareness not just of the fact that autism exists, but of what it is, what it looks like, and that the people who have it and who deal with it daily want and need the very same things that they do. At the party today the kids were playing house and one girl announced "I'm the mom!" A boy declared "I'm the dad!" And Boo stated matter-of-factly "I'm a four year-old kid." And in the end, that's exactly what he is. He's not an autistic kid. Not even a kid with autism. He's just a four year-old kid.

So we are joining with many of our friends around the world tomorrow in the effort to "light it up blue" for Autism Awareness. Our porch light will be blue. Our shirts will be blue. Even my fingernails will be blue. And I urge you to take some time to do something to raise your level of awareness. Go farther than just listening to the "experts" on TV. Contact someone you know who has a family member with an ASD diagnosis. Read some blogs by parents dealing with it. Get a real sense of the people behind the label. Let's turn awareness into action and understanding.

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