Monday, February 28, 2011
I got Ethan his flag. We were late. Sometimes when you walk in late it's hard to focus, to settle yourself and let go of everything and just worship. Sometimes in the back I can feel a bit disconnected, especially if people nearby aren't really choosing to fully participate. But yesterday was different. The spirit of God was hovering.
I was just behind the back row on the right side, which has been reserved for awhile for a group of mentally challenged adults and a few of their caretakers. I am not quite sure where they come from but in the past I've seen them disembarking from a van. I believe they live at some sort of group home. For awhile there was a large group of them, and then I didn't see them for quite some time and felt sad, but yesterday at least, a few of them were back.
One woman I remembered from the past was there again. She's got to be in her 40s or 50s, short and stocky, and always has a grin on her face. That's what I recalled most about her from the past -- her joyful, childlike countenance. I was glad to see her once more.
The music swelled. The worship pastor was singing his own song to God. I felt the waves of goodness sweep over me. As I did, just in that moment, I noticed the woman in front of me. Suddenly she was raising her hands in worship. She hadn't been doing that before. She had been sitting, watching, and smiling. But now she was worshipping.
She felt something. Her spirit felt something.
I remembered my mom talking about taking Andy to a church service, when in the highest point of worship, from out of nowhere, Andy stood up and began raising his hands. Something within him was compelled to respond; to praise.
As we stood and sang and let God's presence envelop us, I thought about what God really sees when He looks at each of us. I thought of how little He probably cares about my singing talents (I've had solos and been on the worship team in the past). I thought about the way people undoubtedly feel sorry for this woman, or shun her, or pacify her childlike-ness in perhaps a condescending way, when God looks at her and sees something so much different.
He sees a spirit that is whole. He sees a soul not imperfect, but less jaded, more innocent and trusting -- the way He has called each one of us to be. He does not look at that woman and pity her.
I want that set of eyes.
Thursday, February 24, 2011
There we were in the "space room," a beautiful cornucopia of cause and effect delights. There was billowing steam. Glowing crystals. Bubbles in glass tubes. And the balls that fly up the tubes and drop down through holes. Oh, how Ethan loves the balls.
A boy was beside him, a year or two older. He too loved the balls. Like Ethan he kept shoving them up in the tube without glancing at anyone around him. I noticed his intense pleasure in them. I noticed he and Ethan spent longer with them than any child.
Could he be one? I wondered. Could he be one with autism? I saw the boy go to the steam, push down the lever on the pipe and put his mouth on it, trying to taste. Seeking sensory input, we autism-savvy types might say. Or maybe he was just being a kid. I watched the way he said, "I'm tired of this place," not looking at his mom, aimless and meandering at any station that didn't capture his interest. The mom caught me looking at him. I felt like an idiot for staring. I'm not staring, I wanted to say earnestly. I'm searching.
I wrote about this last year (http://openupandletgo.blogspot.com/2010/04/moms-like-me.html). I wrote about Jack, the boy I'm almost positive had autism, the one I spotted in the play area at the mall and who captivated my attention one morning. I wrote about wondering where all of the other kids with autism are, exactly. Finding the kids would mean finding their parents. Except -- I've found kids now, in Ethan's school. And not much has changed.
Every day I drop Ethan off at school and gaze out of the corner of my eyes at the other kids and their parents. I wonder which ones are special ed kids in the integrated classes. I say brief hellos to the parents of the kids in Ethan's class. And I wonder, once again, why it is so darned hard to get to know other parents of kids with autism.Ethan's teacher talked about the school wanting to do more to get the special needs parents together. Right when he started school there were class parties for both Thanksgiving and Christmas. "You've got to meet A.'s mom," she told me. "It would be great for you two to connect." Except during both parties, Ethan wanted to run around and goof off, and I ended up chasing him. There was no time to talk to any of the parents. A.'s mom and I did speak briefly on two other occasions. She didn't seem that interested in opening up. Another local person with a child on the spectrum recommended by a friend didn't respond to a Facebook request. At the autism events I've gone to, I have conversations but never know how to carry them to the next level. How to keep in touch? People seem busy with their kids, their lives. No one seems to extend the offer first.
At the mall play area the other day, I saw a little boy a bit older than Ethan walk in and walk right up to the elevator. He was staring. He was mesmerized by the up and down. Only one other child has ever stood gazing so lovingly at the elevator. That would be Ethan.
On this day, Ethan was off playing, somewhat delivered from his elevator obession, at least at this location. "Ethan," I whispered playfully when he came to me. "Look at that boy watching the elevator? Go say hi to him." Ethan went over and the boy ran away, and then Ethan proceeded to watch the elevator. Then he ran away and I saw the boy wandering around, looking past children, walking a bit on his toes. I looked closer and thought with amazement, Could it be? He looked like Jack. The Jack. The Jack of my blog entry, who I had seen at a different mall not far from here a year and a half before. I'm normally horrible with remembering any sort of physical details, but that day was different. I had watched Jack intently and realized down deep that Ethan had autism, before he was diagnosed.
Jack! I so wanted to call out softly as he wandered by, just to see if he turned his head, if he offered any kind of recognition. I didn't dare. I looked for his mom, the tall, bubbly woman who had seemed so at ease that day. But no, Jack was with a man, his dad, no doubt. They didn't stay long. I watched after them as they walked away. I watched with a wistfulness that I can't quite put to words.
Thank God for the internet. Thank God for the support group I attend once a month. Thank God for friends in far away places with ASD kids, and those near who don't have children with special needs but are still caring and understanding to the best of their ability. Life keeps rolling by and we do the play areas and library and toy stores and museums, and still I look, searching for points of similarity, of connection. As I do I feel a little bit foolish, but somehow hopeful at the same time.
Tuesday, February 22, 2011
"Sometimes I just don't know how to deal with it, being such a melancholy person," I said to Dan the next evening, as we were reviewing the weekend's events. "You know me. You know the way I cry at everything. I feel this weight of always wondering when the next moment's going to come with Ethan that's going to tear my heart apart."
Yesterday was day one of vacation week. While Ethan was sleeping Anna designed yet another one of her elaborately creative plans that involved turning the downstairs into a mini children's museum. There was a pretend candy-making room, the trampoline room and the ocean room, complete with a touch tank (a plastic bin filled with water and sparkly pipe cleaners bent into fish shapes). "This is for Ethan when he wakes up," she announced.
I looked around and wondered what my concrete-thinking, pretend-play disliking boy would do about all of this. "How about the touch tank?" I told her. "Let's see if he likes the touch tank."
Ethan woke up miserable, in that crying, clingy way all kids have in which they don't want to do much of anything.
"Ethan, look what I made for you!" Anna exclaimed when we got down to the kitchen. "Let's play in the touch tank!"
"Noooo!" he wailed. "Snack!"
"We'll wait until after snack when he's feeling better," Anna said. But after snack, when asked Ethan again wailed no. He didn't want to go near Anna or her touch tank. I went upstairs to get something, my nose tingling. I could feel my extremely sensitive side kicking in, the part of me thinking about my big girl creating something for her little brother that he didn't understand or appreciate. My eyes were tearing at the thought of her being let down, at the thought of her working so hard to engage her brother. It wasn't fair that she had to work so hard sometimes.
I remembered not long ago praying with Anna that she would find a lost toy, and telling her that God cared even about the little moments, like when we were sad that a favorite toy was missing. God, this is little, I prayed, but my heart is hurting here. Please help him to play with the touch tank.
Back downstairs I met up with Anna. "We'll add bubbles to the tank!" she said excitedly. "That will be motivating." That will be motivating. Wow. That girl was paying attention during Ethan's therapy sessions.
And so my spunky daughter poured in some dish soap. "Come on Ethan, look!" she urged. He inched closer. "Touch the crab!" she ordered.
"He doesn't understand that's supposed to be a crab," I told her gently.
"Then, touch the circle!" she encouraged. Ethan did so. His eyes lit up at the bubbles. He bent down and touched them. In a moment, he was picking up the pipe cleaner fishies as I was and dropping them down into the water, then bringing them back up from the bubbly abyss again.
We were late getting out of the house to go grocery shopping. Bubbles got on the floor and I had to change Ethan's shirt. But after a bit of wooing, some creativity, and perserverance, Ethan and Anna played in that touch tank, and they had fun doing it. Thanks, God.
"You see what I mean?" I said to Dan, recounting the story later. "There are a million stories like that, waiting to happen. I'm dreading the day Anna tells me she wishes Ethan didn't have autism, that her cousins are easier to play with. It's going to feel like my heart is breaking in half."
"But in some ways that is true," he replied. "What if you just acknowledged that, but didn't let it rip your heart apart?"
Retelling it here, Dan comes across as more cool and dispassionate than he was in reality. I knew what he meant, and it stopped me in my tracks. He was talking about acceptance. Part of my struggle is very much about all or nothing thinking, about the unrealistic notion that the only way to escape pain is to avoid pain. What about acknowledging that yes, there may be times that my son is made fun of, my daughter feels her life as a sibling is unfair, our family may struggle, but -- that's not the end of the story. Joy and struggle can exist simultaneously. Heartache and hope can beat together.
What if I let myself feel the hurt of what is but then let that moment go, gave it back to God, or at the very least asked Him what He could do with it? Maybe there would be many more touch tank moments. But even if there weren't, what if I remembered that there is a difference between just all being well, and all being well with my soul?
The latter is often borne of suffering. That is the crazy thing. That is the beautiful thing.
Monday, February 21, 2011
He was at the birthday party we were attending on Saturday. His face had a gray pall. He looked much older than the last time I had seen him.
Dan's grandmother mentioned that she had talked to him during the party, and in that conversation he had said quite frankly, "You know, something like this happens and you look at the world in a completely different way. Every blade of grass, every snowfall looks different."
That reminded me of years ago, when I worked for the Big E that one summer. Lou, the guy who printed all of their newsletters and brochures, had been diagnosed with a brain tumor. We stopped seeing him and learned he was home and could no longer leave bed. For the first time in years, he could not make it to the fair. He knew he was dying, but his friends said he would lie there in bed, too dizzy to walk, and simply gaze out at the maples beginning to turn color. "They're so beautiful," he would say with an otherwordly gratitude. "They are so beautiful."
I thought about those things as we drove on winding back country roads in Maine. I gazed out at endless fields white with snow, dotted with red ramshackle barns, and meandering streams completely frozen over. I thought about what it would be like to more fully appreciate the slant of the sun in the late afternoon and the shadows the light drew everywhere. I wondered why it is so darned easy for us to lose all sense of perspective...and why so often only tragedy of some nature has the ability to make everything more clear and real.
The more I thought, the more I realized that truth was both troubling and comforting. There was something gratifying about knowing that the most horrific thing that could happen to a person could somehow spark a realization of all of the beauty in this world...in the people around us. Something about that brings sense to the senselessness. Something about that reminds me that we are all part of a bigger picture, a bigger story, one that will be infinitely more beautiful and magnificent than our momentary troubles.
I thought this as we drove and the sun set. Every single blade of grass, I kept thinking, kept reminding myself, as the miles rolled by and the sky, full of jet contrails and blue and then gray, slowly became night.
Saturday, February 12, 2011
A few weeks ago I was reading one of my favorite autism blogs and the mom wrote that when she gets excited about her daughter accomplishing a particular milestone, her first inclination is to think, "Great! She's catching up!" Catching up to her typical peers, that is. And then she wrote she has to remind herself that it's not as if her daughter is traveling on a road with all of the other kids and is lagging behind -- it's that she's on an entirely different road.
I've thought about that a lot lately, of course in terms of Ethan. But then it hit me over the head yesterday that of course this is how God sees all of us. We are not in this giant "race" against each other, where someone over there is more spiritual than the next person, more generous, more whatever-it-is. We are all on individual paths. He measures our progress in relation to US and each one of us alone, not how it stands against our friends, our spouse, our family members, our pastors. He looks after each of our story's with great tenderness. What may seem like the tiniest of accomplishments in comparison to someone else might be life-altering for me. Spirit-changing. I should not look down on seemingly modest gains. And sometimes perhaps the gains I think are so important are indeed not so much so...I'm only holding them up against someone else's life, measuring with the wrong yardstick.
I'm grateful God doesn't give up on me because this truly has been the theme, or struggle, of my life for nearly as long as I can remember. I have always seen myself in terms of how I measure up, fit in, compare. And so with Ethan (and to some extent, Anna), my first tendency was to compare and adjust; to make decisions based on what everyone else was doing; to feel ups and downs dependent on what everyone else was doing; to get down on myself and what God thinks about me compared to what everyone else was doing.
God's not looking Ethan and seeing how he matches up against every other typical or not-typical three-year-old. And He's not holding me up in comparison to everyone else. He sees ME. Just me. And loves every unimaginable part, and wants me to let things go and pick things up. Not so I can rival some other "good Christian," but so I can walk the path he has for ME. And run my race well.
Saturday, February 5, 2011
While my life situation is obviously different, her words resonated with me. Yeah, I can get that. Kind of like this autism thing. That whole, it's-a-marathon-not-a-sprint deal. The other day I was reminded how early in the race we are, how many hills in the marathon there are to climb.
I kind of made some assumptions about Ethan and preschool. His birthday is November 28 and he started on November 29. He's doing well (despite numerous snow days and a Christmas vacation), and they want him spending more and more time outside of the autism classroom and with the other kids. Due to where Ethan's birthday falls in the year, I always assumed if we are going the route of having him the blended classroom (hooray!) that when the new year starts in August, he'd start with 3-year-olds, not 4-year-olds.
Not so fast.
He will be three, but turning four next year, and the birth date cut-off (currently being debated in CT) is December 31. A friend who used to teach pre-K was telling me the other day about how she was forced to send kids along to the next class who weren't ready, kids whose birthdays were even in December and were nearly a full year younger than some of the kids, and incredibly immature.
Maybe I am naive, but I was mortified. I'd always heard, especially when it came to kindergarten and boys, that it was no big deal if parents wanted to hold them back an extra year, especially if they'd be the youngest in the class. I started kindergarten when I was 4 and was almost held back due to my shyness. To be honest, I always felt a "kinship" with the class behind me rather than my own peers. My own parents regretted sending my brother to kindergarten too early. If Ethan hadn't been diagnosed with autism, we would have done what we needed to do to have him start kindergarten when he was 5 turning 6, not 4 turning 5.
But then I heard my friend talk, and I went online and did some digging, and found out she was indeed right. Not only that, but I came across other parents of kids with ASD who had been told their child HAD to start kindergarten in order to continue receiving services. Again, this started my blood boiling. How could this be? Was it really all a matter of money? How could the state go against a parents' wishes in this area? And of all kids, to make children who already have social issues attend with kids who are another step ahead socially just because of their AGE?
I called a Connecticut Parent Advocacy Group and haven't gotten a call back yet. Then I spoke with someone at the state's Board of Education. She confimed my suspicions...that when we talk about Ethan and next year, his teachers will most likely recommend he move on with the 4-year-olds.
There was an undercurrent that I picked up on while she was talking. There was a theme that troubled me in so many ways. Her point, which she said without saying, is that unless your child is borderline on the spectrum, these kids are going to continue to have issues. Basically -- it's not going to make much of a difference, anyway.
After I hung up the phone and mulled the whole thing over for the rest of Friday afternoon, I kept vacillating between anger ("How dare they?!") to resolve ("She DID tell me to raise the issue and voice my concerns, as if there is some room for leeway") to doubt ("But maybe I AM just in denial, and maybe all of this is coming out of a desire down somewhere that more time is just going to 'cure' him.").
I thought and I thought. And I knew I needed to hand everything back to God. So I did for the most part, but that doesn't mean I'm waving a white flag. There could be a fight ahead. And when I step back for a second and think about it, I see that this is just one swell in a winding path with many ruts and mountains, a path that I frustratingly cannot see the end of.
This makes me feel very, very tired.
But marathon runners (not that I have any sort of personal experience!) will get nowhere thinking of how far they have until the finish line. They just take it one hill, one step, sometimes one breath at a time.
So, what more can be said? Except here we go.