Thursday, March 31, 2011
Me and Andy, when I was about 10 and he was 2 or 3
Before there was Ethan, there was Andy.
I must write about my brother. So often when I've spoken of him, the words have not been the most encouraging. I've mentioned often the severity of his autism, his destructive tendencies (mostly in the past, not today), the chaos that swirled around us when I was young due to his autism and my parents being overwhelmed about how to best help him. I've said a lot about all of that, but what I haven't said is this:
Andy is an amazing person. He is a champion walker and hiker. He could walk for miles and hike up mountains and most likely leave me in the dust. He learned how to swim one summer just by jumping in the water. Out of the blue -- splash! -- Andy knew how to swim. He did not speak for years and years, until one day when he was 8 or 9 and started singing "Happy Birthday" in the car. He loves music. He loves vacations, riding in the car or in boats, and water. He loves his family. We just have to be watching for the subtle ways he shows us. He, indeed, shows us many things.
Now that I know more about autism, I wonder today as I didn't when I was growing up how Andy must feel in this world that is, well, foreign to him. I wonder what sounds, sights, and sensations assault him and stress him. That part breaks my heart, but then I remember again how even with the degree of his disability, Andy has learned to get along in this world. He can tie his shoes. He can ride a bike. He can request things he wants. He goes to a job and works, with assistance. He lives in a nice home and gets to do activities he enjoys.
Andy can do all of these things, yet he had none of the benefits of education and therapy so common today, for the first at least 5-7 years of his life. In the mid-1980s, he was placed in a special ed. classroom with a group of children who had entirely different (mostly physical) needs. Most of the time they let him play in the sink for a good portion of the day. He had no speech therapy, no occupational therapy for years. I was going through old papers with my mom and saw that Andy must have been in school 5 years before he had anything that resembled the type of IEP's (Individualized Education Plan) we see today. There was no organized plan for him, until my parents started fighting for a better way. He switched schools many times, and still my parents fought. Finally, the school system agreed to pay for his placement at Boston Higashi School, where he went to live when he was 9.
Andy was nine years old and went to live 90 miles from his family. I sometimes wonder if he was scared. I'm sure those thoughts danced in my parents' minds often, but when Andy came home to visit, we could see how much he enjoyed school. He was LEARNING. Higashi School gave him the discipline, the organization for his body and mind, that Andy so desperately needed.
My brother is brave. My brother is a survivor. My brother is a person. One of the biggest frustrations I think for all of us has been getting to know who that person is.
When I was a teenager and would babysit Andy, sometimes we'd have these moments. I'd notice something as small as a food we both liked to eat, or a song we both responded to. I liked to sing to my brother. I remember on summer evenings, while Nate (my other brother) played outside, and Andy started to calm down and wind down, I would sing him songs from church. In those moments, I forgot about the way Andy ran around our house, making noise and messes, the way he was so different and so difficult to understand. In those moments, he was like me. We both loved music. And something from God spoke to both of us within the songs.
I wish I knew my brother with autism better -- but know that I know that I have connected with him, and I cherish those moments.
There are other things I could say about Andy. I could talk about what he teaches me and all of us about the eyes of God, and selflessness, and about what really matters in this life. These things are all true, but right now I will let them rest because Andy is also well, a wonderfully complex and most definitely imperfect human like the rest of us. He's a guy approaching 30 years old, a son, an uncle, even a friend to his buddies in the group home.
And he's my brother. I love you, Andy.
The other day I was looking at that word and saw clearly the other word just within it: persevere. This was just after I read an article on some of the positive character traits people with autism possess (such as an inability to lie, or a lack of materialistic attitude). I realized that they should have added perseverance to the list. A person with autism will get an idea into his head and remain laser focused on doing whatever it takes to accomplish it. (Of course, the idea could quite possibly be finding a certain hidden food or toy, or figuring out a way to sneak outside, but let's let that rest for a minute). Someone with ASD will grasp onto an issue -- a request, let's say, and not take "no" for an answer. They cannot be deterred. They must get the desired result, and they will continue to talk about it, ask for it, demand it, until the request appears. It's funny, but when I think about this the first thing that comes to mind is the story in Luke, often called the parable of the persistent widow:
Then Jesus told his disciples a parable to show them that they should always pray and not give up. He said: “In a certain town there was a judge who neither feared God nor cared what people thought. And there was a widow in that town who kept coming to him with the plea, ‘Grant me justice against my adversary.’ “For some time he refused. But finally he said to himself, ‘Even though I don’t fear God or care what people think, yet because this widow keeps bothering me, I will see that she gets justice, so that she won’t eventually come and attack me!’” And the Lord said, “Listen to what the unjust judge says. And will not God bring about justice for his chosen ones, who cry out to him day and night? Will he keep putting them off? I tell you, he will see that they get justice, and quickly. However, when the Son of Man comes, will he find faith on the earth?”
Jesus told them the story so that they "should always pray and not give up." Yet often we can be so easily discouraged away from prayer, from faith and trust. We don't see a result...or see what seems to be doors slammed in our faces...and quickly walk away, our tails hanging between our legs, defeated. If only I could have an ounce of that autism gumption, that doggedness, when it comes to spiritual things!
The judge said, "Because this widow keeps bothering me, I will see that she gets justice." Perseverance brings about results. Kind of like the cookie you break down and give your child (with ASD or otherwise!) who just won't stop asking.
God, help me to perseverate, when it comes to prayer and keeping the faith. Help me to learn to keep on asking and not give up.
Friday, March 25, 2011
Driving there, I felt a familiar tension. I just don't want to hear a bunch of negative stuff. I don't want to get in a bad mood, I started out thinking. Then I had to stop myself. First, I was responsible for whatever mood I ended up in. And second, I realized my confidence or lack thereof could not come expressly from whatever Ethan's teachers told me, good or bad. I have a habit of looking for encouragement to boost my mood. Not that encouragement is a bad thing. But I've learned lately that I have to learn to encourage myself, or as the verse says, "encourage myself in the Lord," when others aren't doing so.
On to the meeting. I talked with the special ed teacher, the speech therapist, the other preschool teacher in the integrated room. He's doing well with speech. Social skills are slower in coming, but he plays alongside kids. Overall, he's doing really well. They listened to my concerns and agreed to hold him back in the 3's again next year. Yes! Sweet relief was pouring over me.
We were talking about the rationale behind making sure Ethan does not start kindergarten at age 4. "Well, he's very bright," said Dianne, the special ed. teacher. "I can see him probably working at grade level when he's in kindergarten or first grade. And then, you know some of these kids you could be talking about college. And that would mean he'd be starting college at 17."
Several things exploded in my head at that moment. College! I was thinking. She said college! Immediately I saw myself just a few days after Ethan was diagnosed, opening the mail and seeing the paperwork from his 529 college savings account, and bursting into tears. Dreams I didn't think I even had felt splintered into thousands of pieces. And now here were Ethan's teachers, mentioning his name and college in the same sentence.
But there was more than that. I realized that my joy came not so much from the mention of college but that my son's teachers believed in him. They saw his potential. Isn't that all we can ask of our child's teachers?
And even beyond that -- I understood once I heard the world "college" that college was no longer a dangling carrot, once of those elusive pieces of "normal" life that if Ethan could somehow achieve, would somehow prove that everything was okay. No. College suddenly appeared to me as a nice idea. A possibility. But not a necessity for proving my son's worth, for proving he had "beaten" autism. I love the idea of hoping. I love the peace that comes with acceptance even more, though.
"I am not going to college!" Anna has proclaimed to us numerous times. She wants to do crafts; be an artist or something. How ironic would it be if Ethan ended up in college and Anna did not? I have no idea. That's the funny thing about autism. It makes you consider things you had only assumed in the back of your mind, when your child is very young (he'll grow up and go to college/get a job/get married). Autism brings to light what your priorities are, and why. Autism asks you to adjust your dreams, and I'm learning sometimes, that's not necessarily a bad thing.
Sunday, March 20, 2011
Growing up in central and later western Massachusetts, the Red Sox were just there. They were an extended part of the family. They were in the background during family dinners and crackling on the radio on sultry summer evenings. I learned the game of baseball by watching them. I had my first crush on a certain young pitcher named Roger Clemens who struck out 20 batters on an April evening when I was 11 years old.
That was 1986, the year this shy, awkward girl with few social outlets became a true Red Sox fanatic. I made a Red Sox scrapbook. I memorized stats. I plastered posters of my favorite players on the walls. I huddled under the sheets and listened to games on my radio, long after I should have been asleep. I attended my first game at Fenway Park, dazzled by the green of the grass, the blue of the September sky above.
Then later that fall, the ball went through Bill Buckner's legs, and the Red Sox broke my heart along with everyone else's. I refused to go to school the day after they lost. I had bragged to the popular kids on the bus (New York fans, those western Mass. traitors!) that the Sox WOULD undoubtedly win. They had all laughed, and I ended up being a coward. I couldn't face them.
Before the Red Sox broke my heart, I hadn't fully realized that they had broken everyone else's heart in New England time and again over the course of generations. I hadn't paid attention to talk of curses or understood that while everyone seemed to passionately follow the team, they also expected them to lose. They almost waited for the pain, in some way masochistically enjoying its inevitability.
In my home those days, things weren't so great. When the Red Sox lost that fall I was forced to pay attention to real life again, in our cramped apartment where my brother (then 4) with autism was wreaking havoc. Worse than the havoc was my family's sense of powerlessness. "Why do bad things always happen to us?" I remember my mom questioning aloud. To me that sounded awfully reminiscent of the Red Sox. Were we cursed? Destined to always struggle? In time, I began to pick up that mentality and wear it like a very heavy cloak -- and still follow the Red Sox, now expecting them to lose. It was better not to hope. I would be safer that way, keeping expectations low.
Fast forward to 2003. The Red Sox came breathtakingly, agonizingly close to beating the Yankees and going to the World Series -- only to lose in horrific, last-minute fashion once again. My boss, a Yankees fan, sashayed into work the next morning with a smug smile on her face. The rest of us glowered and all of those feelings came swirling up to the surface. The inevitability. The pointlessness of believing the impossible. Can a team really drive the way one thinks about life and faith? This sounds implausible, but when it's complementing an already present struggle with inferiority, when that kind of victim mentality is already permeating the atmosphere around you, I'd have to say yes.
And so 2004 arrived, and along with the rest of New England I crawled back to following the Red Sox. By fall I was amazed to witness what was lining up. The Red Sox were going to have to play the Yankees again if they wanted to reach the World Series. In other words, they were going to have to face their demons.
They lost the first three games of the American Leauge Championship Series. The third game, the Yankees demolished them. New England gave up all hope. No team had ever come from three games down to win the ALCS. We were in Maine the day after that game, eating in a restaurant, and I remember the murmured talk about the game, the subdued atmosphere. Everyone's step seemed slower; laughter seemed muted. It was happening again, and the Red Sox were finding new ways to rip everyone's heart out.
I often wonder what it must have been like to be a Red Sox player, always playing under the weight of horrible expectations. Not low expectations. Expectations that they were going to screw up, and bad. Sometimes I wonder if Bill Buckner somehow felt the burden of it all just before the ball went through his legs. I know I lived many years in that kind of thinking. It's no way to live, believing that some force beyond your control is going to rip everything away from you.
But that year, the year everything changed, the Red Sox had a team of self-described "idiots" who were too ignorant to know or care about the failures of the past. Pitcher Curt Schilling at one point posed a question to the team: "Why Not Us?" The team had T-shirts made bearing the slogan. So matter-of-fact. So flippant in the face of years of history and tragedy. Why couldn't they win? Why not decide who cares what happened before? Why not just play. Just win one more game and who knows what will happen?
The rest, as they always say, is history.
During that amazing run when the Red Sox came from three games down to beat the Yankees, then swept St. Louis in the World Series, winning the final game under a lunar eclipse, I learned more than one might think the baseball playoffs would teach a person.
I learned good things really do happen when we believe. Faith doesn't always end in heartache.
I learned there really wasn't a curse after all, except perhaps for the curse of damning yourself with your own thoughts -- and that somewhere deep down, I had known that all along.
I learned that just because something happened a certain way a hundred times before does not mean the one hundred and first time, it's going to happen that way again.
I learned the sweetest victories are those that seem impossible and come after much pain.
This is why, while they are an overpaid bunch of guys playing a little boy's game, the Red Sox will always be seared onto my heart.
Eleven days to Opening Day...
Monday, March 14, 2011
"Are they supposed to be on there?" I asked, hanging back to talk to the moms. They both shrugged. "No one's yelled at us yet," one said with a laugh. "They've got to do something to get all of that energy out." I was just about to delve into more conversation when I noticed all of the boys were gathered around Ethan at the top of the ladder on the play structure, laughing. I headed closer.
"Ha! Ha! Ha!" they were all calling. "He pooped his pants! Ha Ha!" Ethan was looking at them in a half-bewildered, half-amused, little bit annoyed kind of way, since they were blocking the slide. He didn't get it at all. I looked at his pants. The back of him was soaked because the slide had been wet. "He's just wet from the slide," I said quietly. The other moms came over. I could tell they were embarrassed.
"Boys! Stop that!" one of them chided. "You play nice or you won't play at all." The boys ran off. The moms went back to talking. Ethan went down the slide, oblivious to what had just happened.
I knew these kids weren't making fun of Ethan's autism and this could have occurred with any boy they didn't know who had intruded on their little group, but in a flash I saw a glimpse of the future, and of the past. I thought of the whispers and snickers when I was young because I just didn't look right or talk right or fit in, and how it hurt so incredibly deeply. I saw Ethan in classrooms with typical kids, talking behind their hands, whispering, teasing, ignoring. My heart in that moment hurt so bad I felt as if a dagger were being driven through it.
I could feel my eyes welling with tears. Is this what "inclusion" will be like? I wondered. I saw myself volunteering in one of Ethan's classrooms down the road, watching kids treat him unkindly while trying to secretly wipe away my tears. How can I do this, God? I pleaded. Ethan may not understand, but my skin is about 20 shades too thin.
The boys and their moms headed home, and as Ethan continued to play, an image suddenly jumped into my mind of Jesus, headed to the cross, hearing insults hurled at him by people who just did not understand. For we do not have a high priest who cannot sympathize with our weaknesses...That verse from Hebrews ran through my mind. I felt a peace, a comfort begin to settle me.
Then I remembered the verse I'd read the night before --Matthew 19:14:
Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these."
The kingdom of heaven belongs to such as these. Ethan looked up at me with this huge, adoring grin from the slide. Something about his look stopped my tears in their tracks. His innocence took my breath away. I felt a Mamma Bear kind of pride swell in me, the kind that wanted to hug him until it hurt and that wouldn't for the life of me trade my boy for a typical one. Is Ethan a perfect, sinless little angel? Most certainly not. But something about his loving spirit, his inability to be mean and hurtful (at least right now), illuminated just a little better what that often-quoted verse actually means.
Isn't it sad the way learning to lie and deceive, to be mean and intentionally hurtful, are milestones that mark childhood development? It's as if, as we grow, our nature grows further away from what God intended, and continues to falter without our conscious effort to allow Him to bring us back. Those with special needs do not drift quite so far. The world may mock them, but they are closer to God than we may ever know.
Thursday, March 10, 2011
It's been 18 months since Ethan was diagnosed with autism. Lately I've been thinking about this blog and how my writing not been about Ethan or autism so much as my reaction, my dealing with his autism. So much of what I've written has been immensely personal, and for those few who have been along for the ride here, I don't know whether to apologize or say thanks for bearing with me. I know my writings have seemed at times to be like a CD skipping...constantly returning to the same themes, retreading the same territory. This has been because literally I have felt "stuck" -- stuck working through not just Ethan's diagnosis but every ugly thing it brought out in me that I hadn't dealt with, or allowed God to deal with.
I feel like I'm ready to turn a page now. Although I am realistic enough to realize that whatever "moving on" means, what it does not mean is ever completely moving on. This is not a Scrooge moment, where from this point forward I'm living transformed. It's more like a...okay, it's just a Deb moment, and I'm living life as I have before, with some alterations.
What precipated this? Many things. A book. A sermon. An argument. A verse. A look. Even the words of a former Red Sox player (Curt Schilling, who incidentally has a son with Asperger's, but that is a very long story, which maybe I'll explain sometime). Bottom line is, in time this blog will seem a little bit different because I will be a little bit different. I will be writing without seeing through lenses that have brought me too much trouble. I am asking God, and He is helping, to take the scales off my eyes, scales of fear, insecurity and shame that have clouded the way I view life and interact with others. I thought I'd lost them. Autism has helped me see how far I have to go.
But before I think about where I'm going I have to share what I've been learning, in both the last 18 months and really, all of my life. I was looking up at all of the books on my bookshelf the other day. I have REAMS of books, Bible study guides and self-help and autism information and hints for raising kids and getting along with your spouse and being a good wife. I have books on the heart and the mind and the supernatural. Devotions for day and night, tips for success, for letting it all go and for getting organized. I have been blessed with this plethora of information, but (and this brings me to Life Lesson #1):
1. Knowing something means nothing if you don't act on it. This goes for everything from the word of God to raising your kids to cleaning your bathroom. We live in a culture awash with information. It's exploding, flooding our brains and then just leaking out, not going to any use, because we're not applying the information we have. It'd be better to grasp one truth and then act on it than to have shelves of Bible study lessons but never never do a thing with any of the knowledge and insights we've gained.
2. Grief and acceptance are not only a process, but an unpredictable process that often ebbs and flows. All that talk about the 5 stages of grief or whatever it is are nice in theory, but life doesn't really work like that. I have heard this from others, too, whether it's losing a loved one, having a child with special needs, facing a health issue or ending a marriage. Learning to accept something really difficult does not happen in a straight line...but is more like riding waves closer and closer to the shore. There is a lot of choppiness, a lot of up and down. You may inch closer and closer and then something happens that sucks you out deep again. Sometimes you may reside on the shore for awhile...sometimes another wave comes in and pulls you out for awhile until you fight your way back. And that's okay. That is perfectly okay.
3. We could prevent much heartache but just realizing we WILL mess up sometimes. And when we do, we need to be stern but merciful with ourselves. Messing up is not an excuse to throw in the towel or to drive ourselves into the ground with self-hatred. Just stop and turn back. Stop. Dust yourself off. And turn back.
4. The only way out is through. Everyone's heard that a million times, but are we living it? The only way through anything that is challenging is to just plunge in, slog through, keep going. Sometimes it's not pretty. Often it's uncomfortable. Certainly it's not easy. But while we may feel as if we're attempting to conquer the impossible, if we'll just do the next thing, we can make it. Take one more step. Then another. Then one more.
5. We DO have control over our thoughts. I remember saying to someone recently, "Well, if that happens, I just don't know how upset I'll get." She answered, "Well, that will be up to you." Maybe other people have always known this, but for some reason this concept has been huge to me. Wait, you mean other people out there consciously choose to not think about things and drag themselves down into a pit of depression? And I can do that, too? Well yes, but it will be hard, which is why I need to keep #3 and #4 in mind.
6. There is always something to be thankful for. And we need to remind ourselves what those somethings are. Paul says in Philippians to rejoice always. As Pastor Mike said in last week's sermon, he wrote those words from behind prison bars, not while on vacation.
7. Love people more and you'll think about yourself less. I had this "mentor" for awhile in the corporate world, who could be annoyingly truthful at times. He once said that shy people were actually more self-absorbed. I felt anger flash through me (being shy myself) until I realized in some ways he was right. When you're always thinking about how everyone is responding to you, you're not thinking about other people. When I'm always thinking about how I feel, mired in emotional temperature-taking, I'm bogged down with ME and me alone. Sometimes just helping someone else in the smallest of ways can snap you out of the pity party that was threatening to hijack your day.
Monday, March 7, 2011
I was going to write about the weekend, about the annoying behaviors that have returned, (suddenly doors and drawers are big to Ethan once more, and I don't know why), about the meltdown that occured in the hobby store because it was full of good, old-fashioned toys that don't have buttons, which Ethan didn't like, and a marble toy that he did very much like, so much so that when I tried to move him on he fell to the floor, screaming.
I was going to write about the way I had to drag him past the rows of toys he had no interest in, and how we sat in the car and Dan talked in a small voice about how he had seen so many model airplanes in the store, and how he had always dreamed about building models with his son for hours on end the way he and his dad did. Dan doesn't often grieve but I could hear the grief in his voice...because even if some day Ethan decides to really like models and does end up spending special time with Dan doing that, things aren't exactly the way either of us imagined they would be.
I was going to write about all of the toys in our playroom that often go unused, and how, if I let them, they scream "Defeat!" at me. I was going to write about the countless times lately I've tried to coerce, encourage, sneakily introduce new, intriguing toys that aren't electronic in nature, scouring shelves at toy stores and Target and consignment shops, looking for the holy grail of toys that will suddenly turn a key and "Poof!" Ethan will enjoy play. He'll dig in his toy boxes and scatter everything around the room and use his imagination and learn and grow and not get enjoyment out of carefully opening each of his bureau drawers, lining them up with precision, and then slamming them shut.
I was down this weekend. I wanted to get it all out here. But then I brought Ethan to school today. His new aide (apparently they switch them around every few months) greeted him with a smile. She leaned low and looked straight at him and asked, "Ethan, what town do you live in?"
"Windsor," he replied softly. I was amazed. Impressed yes, that he remembered his town (something Anna still forgets) but more so at the look in her eyes. The anticipation. His aide KNEW he could do it. I could see the expectation in her face. She'd been working with Ethan for just four days, but she believed in him. She was waiting for him to confirm what she seemed to already know -- that she'd taught him something last week and that he was one smart cookie who would carry the information over to Monday.
I walked back to the car, recalling simple joys. The big "hi!" I got this morning from Ethan, with a smile. The fact that he is very close to being completely toilet trained, and that our nighttime capers have all but stopped. The way he's taught himself all of his upper and lower case letters. I thought of he and Anna this weekend, sending their slinkies down the stairs, or the way he asked to play with bubbles in the water with his sister. I thought of the sheer joy he finds sitting and watching his dad play the ocean game on the Wii, commenting on the sea slugs and holes (Ethan is really into holes at the moment) and dolphins.
All of my life I have had this laser vision for finding the one thing wrong about a situation and honing in on it until that one wrong thing swallows everything around it. I know that I cannot live this way and live well. I have to celebrate what's right and not swim in the pit of all that is wrong. Or at least...not spend half the time I've been spending there lately.
There will always be something to be stressed about. Hadn't I learned this when it came to worrying if he'd talk? Ever stay in bed? Ever be potty trained?
There will always be something to mourn, but simultaneously something else to rejoice...if I only make the choice.
Thursday, March 3, 2011
"Yea!" he exclaimed. Sometimes I can tell even Ethan gets bored with coming home every day from school and eating the same peanut butter sandwich and staring at the same four walls.
At McDonalds we dealt with the usual things: there was the fear of the loud hand dryer in the bathroom, which has really ramped up in recent days. There was the facination with the automatic door that leads into the play area. There was my insistance that Ethan eat not just fries but nuggets (as if they're sooo nutritious) and then Ethan's initial reluctance to climb up to the tunnels. As is standard, he got up there and didn't want to come down the slide. "No shock! No shock!" he kept yelling as other kids his age giggled and clamored past him. Ethan has a thing about getting zapped by static electricity.
If he can make it down the slide today, that will be a victory, I thought. Then another voice chided that one. Who are you kidding? it asked. If he goes down the slide, you'll say victory would be playing with other kids. It's always something. You're always wanting him to do more.
Wanting Ethan to get out of his comfort zone and try new things certainly isn't bad, in itself. But always looking to the next thing instead of being at peace and also letting him enjoy where he is right now isn't ideal. In fact, it leads to much misery.
Different is not less, I reminded myself once again. When I did, I realized how much power was in the words. I realized that every time I get down when Ethan's not doing what other kids his age are doing, it is because I am subtly somewhere in the back of my mind believing that lie -- that different somehow implies not as valuable, as worthy of love, of God.
Later at home I thought about that Bible verse that refers to Christians as a "chosen generation, a peculiar people." Peculiar. When I looked up different versions of that verse, I found that other translations substitute the word peculiar with the phrase, "belonging to God."
I remembered a sermon our pastor preached years ago on that same passage, on the beauty of peculiar. "Picture a field full of daisies," he had said, "and right in the middle of it, not a dandelion sprouting up -- but a rose."
Each one of our ASD kids is undoubtedly peculiar. And each one undoubtedly belongs to God, undoubtedly is chosen.
Different is not less. God certainly does not think so.