Monday, June 27, 2011

What I Would Have Said

I could be making assumptions, but unfortunately, I don't think I am.

I have an acquaintance who has a son a little bit younger than Ethan. We don't know each other well and I've had a limited number of interactions with her son, but after observing him just a bit, my ASD radar went up. I think other autism moms will understand. You just know. Not that I'm a developmental pediatrician, but in my head I wondered if he had maybe PDD-NOS.

This certain friend and I became friends on Facebook, and that very day I noticed her posting about her son starting Birth to 3. This happened to be just a few days after Ethan had aged out of Birth to 3, and I was still feeling very sentimental and wanting to sing their praises, so I (probably foolishly) wrote her a Facebook email just telling her briefly about Ethan's experiences with Birth to 3 and wondering if they were going with the same provider. I never out and out asked what was wrong with her son, and I figured since she was posting about in on Facebook, she must be open to talking about it.

I never heard back from the email. Eeek, I kept thinking, because I'm one who really fears making social gaffes. I shouldn't have brought it up. I tried to tell myself that maybe she just wasn't good with email, but something inside me knew better.

Months went by, and I continued to have brief interactions with this person and her son. One time I overheard her talking about her son's "sensory issues," but she never sought me out personally in any way. If anything, she seemed a little more distant or shy or whatever, but I told myself that was my overactive imagination.

Until a few weeks ago, when I ran into Ethan's favorite Birth to 3 therapist in Target, of all places. Apparently after leaving Ethan his core group of therapists were all assigned to another case in a nearby town. "Facebook is so funny," she was saying. "We try to keep all of our cases confidential, and I was telling Theresa (another therapist) about something you posted about Ethan on Facebook in front of this new mom, when her eyes widened and she said she knew what we were talking about -- that she'd read the same post, because she was friends with you, too."

This is how I found out that after Ethan, his therapists had indeed traveled to the home of my acquaintance and her son, and provided services for several months until he turned three, and that she knew that they had been Ethan's therapists, and yet she had never said a word to me about it.

The other day I arrived at the mall play area with both Anna and Ethan in tow. Neither was in the mood to play, and in fact Ethan was being rather difficult. I looked over and, lo and behold, this mom was there with her little boy. Maybe we'll get to chatting! I thought, but then thought better of bringing anything up.

Turns out, that didn't matter, because literally two minutes after we arrived, I saw this mom go and lead her son off the play mountain he'd been climbing on. She said a quick goodbye and scooted out of there.

Maybe they really needed to go. Maybe they'd been there for awhile and the whole thing was a big coincidence. Only...I can't help but think there was another reason for her swift departure.

I drove home from the mall that day lost in my head. I felt both compassion and frustration. I realize everyone has different ways they process things. And some people would rather live as if the issue they are dealing with is going to go away. In this little boy's case, it very well might. I've noticed him in more recent weeks and can see the improvement. Maybe in fact this will all be a "phase" that he grows out of and they can move on as if all of the therapies didn't happen.

But if only I had been able to catch her ear. It's okay, I would have said. Do you want to talk? I would have encouraged her that her son is doing great, and that he seems like a very smart and creative little guy. I would have empathized with her about the quirky or sometimes (more in her child's case) aggressive things our kids do. I would have talked and listened.

There is a tiny part of me that wonders if this mom does not want to talk because she is afraid of me. And this hurts. I wonder if she looks at my son as a comparison point, a "at least he's not THAT autistic" reference. I wonder if Ethan and I are too real, too close to all of her fears.

Please don't be afraid, I'd tell her. And then I'd say, and am saying to myself: Sometimes holding back not only hurts us, but those around us. Sometimes we need to step out despite our fears, because someone needs us. Someone else might need to make a connection.

Wednesday, June 22, 2011

The Last Day

On Monday, Ethan's class held a picnic to celebrate the last day of school, and everything went wrong.

First was the fact that I didn't even know they were holding an official "pack a lunch and a blanket" kind of picnic, because I hadn't seen the flyer, just had a verbal invite from a teacher who casually mentioned the whole thing. For some reason I foolishly assumed this was just a little cheese and crackers occasion in the classroom, as the other gatherings had been.

Next was the fact that this whole picnic thing was just not part of Ethan's schedule. We have a plan when it comes to school, you see. On nice days we got out on the school playground for about a half hour, then hop in the car for home. On Monday, everything was different. Ethan was already hot and sweaty from playing with his class on the playground before we even got there. I picked him up and then told him we were going back outside to play. I tried to emphasize once again that we were going to stay for awhile and have something to eat there, too.

This worked for awhile but as he got hotter and more thirsty and just bored with the playground he decided he wanted to go. He decided this at just about the time the rest of the class came outside to begin the picnic. I watched, mortified as parents began arriving with their blankets and packed lunches.

"I'm hungry," Anna, who was with us as well, started whining. Then Ethan started asking for a drink. Meanwhile, his teachers were bringing out water tables and bikes for the kids to play with. "Time to go!" Ethan announced, not liking all of the hustle and bustle.

"We're staying here, remember?" I said for what felt like the twentieth time. "We're not rushing right home today, we're going to stay for our picnic!" Which was really quite funny, considering we didn't have any food.

More whining ensued. I wondered if we should just haul it out of there. To make matters worse, I looked around and noticed something. Here I was observing the autism class, and all of the other kids were playing. Numbers of them were over at the water tables, splashing. Several were on bikes. Some were getting pushed on the swings or chasing bubbles a teacher was blowing. A few were aimless, yes, or making strange noises, but overall the whole group was relatively happy and just going with the flow.

Except for Ethan, who was now running along the side of the school to comment on the PA speaker attached to the wall. In that moment, I was so tired of the PA speaker. We have to talk about the speaker every day. I was tired of the fact that I had tried to suggest he do something besides swings and he had dissolved into a woodchip-kicking tantrum. I was frustrated that once again, the parents I so wanted to get to know were all here, and I was dealing with his antics.

Things got worse. I opened his progress report, which was stuffed in his backpack with a lot of other end of the school year papers. The themes were the same. Physical therapy, lots of progress. Speech, pretty good progress. Occupational therapy, some progress. Social So far to go, even with goals that to me seemed so basic. Playing differently with objects. Initiating play with another child.

I swallowed hard and tried to keep my eyes on all the gains he had made, in other areas. We headed inside to the classroom where other parents were and where a teacher graciously found some milk and crackers for the kids. They wolfed it down and headed to the play area. Or I should say, Anna headed to the rice table with numbers of other autistic children and their siblings, while Ethan went off to the side with a ball toy and kept playing over and over, along with another boy who was actually brand new, having turned 3 just the day before.

"I like to see how all the kids are following through with play schemes we've worked on," announced his teacher to those who were standing nearby. She motioned at Ethan with a wry smile, "Except for this one."

I felt a weird kind of frustration seething up in me. These people don't know what he's capable of, I stood fuming. They don't see the way he seeks out play with his sister. They didn't witness the moment he asked the boy at the park to go on the slide or asked the other kid at the McDonalds area to play with him. That one I mentioned a few minutes later, to his teacher.

"Really?" she asked, looking amazed, as if that was such a novel concept. He's going to be one of those kids who just isn't into play, I remembered her saying at a meeting. To me it felt like a concession that I wasn't ready to make, at least not completely. I love his teachers and I know they believe in Ethan, as least to some extent. Just the other day one of them talked about the fact that he WOULD be a mainstreamed kindergartener, that he has that potential. But sometimes being with them feels like an exaggerated version of my visits to Anna's preschool teachers back in the day, before she really "clicked" in school. I felt as if they were seeing her through a pair of blurred lenses; that they weren't getting the whole picture.

The other thing gnawing away at me was the fact that these kids were supposedly autism kids, and at face value, were doing just fine. Didn't anyone else have Ethan's issues? I wanted to ask. Were most of these kids just kids who would have been classified as "quirky" 30 years ago?

Later, at home, everything kept broiling in my brain. Worst of all was that sinking feeling that once again, I had been derailed by comparing my son to other kids. Who cared if his teachers didn't see everything I saw? He needed his mom to most of all just believe in him and love him regardless.

How long are you going to have to keep teaching me this lesson? I asked God, and the verse that jumped into my mind was His answer when the disciples asked how many times they had to forgive. Seventy times seven. Again and again and again and again.

Later my mom stopped by and I watched the free and easy way they related to each other. I thought of the way I stared resentfully at kids who barely seemed to be on the spectrum and wondered about my mom's struggles as I whined about Ethan's problems. Every time she looks at him, I think she sees so much of who he is rather than what he isn't accomplishing at the moment.

How many times will I have to learn not to look around but above?

Today Ethan and Anna played together for an hour. I relished in the sounds of them giggling together. Come here, Dianne and Rita, I mentally whispered to his teachers. Come on over here and see THIS.

But I can't stay angry, with them or myself. In our own ways, Ethan and I ARE slow to bloom. We are slow to "get" what others want us to get. Thank God He's not giving up on either of us.

Monday, June 20, 2011

My Sunshine

"Mom, can we do cow tonight?"

Every night I hear the same question float down to me from upstairs from either Anna or Ethan, after Dan has gotten Ethan ready for bed. Most nights I say yes, and then I hear excited pattering of feet. I go upstairs and into Ethan's room. Anna is in his bed, under the covers. In his hands, Ethan has what I can only describe as a Hobby Cow, like a Hobby Horse, the horse head with the stick body that one would pretend to ride, only it's a cow that he got from a relative at Christmas, a big fuzzy cow head with horns that makes mooing noises when you press a button on its ear, the cow we all laughed about when he opened it, because really, it's rather hideous.

Ethan picks up the cow and starts banging it on Anna. "Get out of bed! Get out of bed!" he yells, while Anna giggles and refuses. This is a game we've played scores of times now. Then he hands the cow to me. "Mommy do it," he insists. So I start making cow say silly and ridiculous things to get Anna out of Ethan's bed, and making the cow moo, then insisting to Anna that it's really TIME TO GET OUT OF BED NOW, FOR REAL while she pushes the whole game a little longer, then finally walking him across the room in his stick body to go back to his home in the corner.

Then Anna gives Ethan the biggest possible goodnight hug, so big that they both end up on the floor on top of his stuffed alligator. Her brother, soaking up this loving routine, then tells her goodnight and slams the door shut in a satisfied way.

My girl turned seven the other day. Seven. The number startles me, so much closer to tween and pre-teendom and moving away from dolls and My Little Ponies and all of the other creatures and critters she has in little makeshift houses all over the place. I can't keep her little forever, but a part of me wants to.

Sometimes when I look at Anna I see myself, in a startling way. When Ethan was born, she cried because he was not a girl and she didn't have a sister. I did just the same thing when Andy was born. She can lack confidence. She has big dreams and wants attention the way the really "outgoing kids" at school do, but another part of her is shy; the two sides battle. She devours books. She likes to sing.

Often though Anna shows me a different way I might have approached my own childhood, a way I can still choose to live my life. She's not a worrier. She's generally an optimist. She's enthusiastic and jumps right in to most new experiences. She doesn't want to hear she "can't" -- if she's determined enough, she'll make it happen.

She also has an uncanny ability to formulate games that Ethan enjoys doing, games that have that perfect combination of repetition, newness, and overall FUN. Anna is fun, and sometimes that fun is contagious.

Of course my daughter can be infuriating at times. She's stubborn, impatient, proud, and not the most compassionate child. Empathy is not her strong point. Amazingly, though, having Ethan as her brother has helped soften the edges on those weak areas. She knows that in order to encourage him to play with her, she has to see things from his point of view. Her patience is tested as she attempts to show him how to do a simple craft with her. If I catch her mocking someone who’s, say, not as quick as she is with reading, I remind her: “How would you feel if someone was teasing Ethan because he is slower at some things than other kids?” That gives her pause.

Anna has not yet been challenged by kids demanding to know why her brother is the way she is. Sometimes I see yet another weakness in her that exists in me -- that deep-seeded need to please others and fit in at all costs. But I know over the years, she is learning. We both are. My prayer is that we can show her now -- before too much time has passed and too many lessons are learned the hard way -- that she doesn’t have to be ruled by the opinions of other people. Again, I know her brother will help her learn that in ways she might not have otherwise.

There are times I worry about what the future holds, and the possible extra burdens and responsibilities that may be placed on her. But then I remember that pure love she has for her brother; love that doesn't have to be worked up or encouraged, but just flows. That brings me peace.

When Anna was little I used to call her my firecracker. She was opinionated, explosive, full of zest and sometimes fury. I love the spark in her. I also love the softness that has formed slowly over the years. I can't imagine life without her. Happy Birthday, Anna.

Tuesday, June 14, 2011

Please, Slow Down

To me, one of the frustrating things about autism is the way people (or at least kids) on the spectrum have such a difficult time just ...slowing...down.

I don't just mean the running issue, while that certainly exists. I remember my parents forgetting to chain the front door one day when Andy was about five or six, and the mad dash he made out of the house and across the parking lot of our apartment complex, in mere seconds. Or the time he got out of the nursery at church and ran, yelling, all the way up the side aisle to the front, where he flicked the lights off, before anyone knew what had happened. From the time Ethan could walk he was always on a dash somewhere. "He's a man with a mission," a friend at church once said jokingly, and it was (and still is) true. His eyes, laser-focused, were on something ahead (probably in this case, getting to the church doors first to open them), and he didn't want anyone slowing him down.

But that's not exactly what I mean here. I'm talking about how hard it is for kids on the spectrum to just slow down and hang out, without an agenda, without having to know what's going to happen next, without direction, redirection, and suggestions.

Sometimes I have to laugh because I've never been the best at just "chilling out." Actually, no one in my family was, growing up. My mom hated us lounging around in pajamas. Sitting around aimlessly and mindlessly watching TV was a no-no. Not having a plan just didn't happen in my family. We were all just a little uptight? Were these signs of autism genes in us at work? I don't know, but I don't remember too many times just sitting around and shooting the breeze, except at big family gatherings. Worse was the fact that most of us seemed like we HAD to have something to look forward to in order to cheer up the day. My dad always was looking forward to restaurants or the meal we were going to have. Nate was into the game he'd get to watch. I too looked forward to food or trips or books. I'm kind of generalizing here but you get the idea. The concept of just "being" was so foggy. I seemed to always be working to get to some kind of reward.

Gee, that sounds familiar.

Autism brings the concept of no downtime to a whole new level, though. I can remember my mom gearing up for the month Andy would be off and home from the residential school in the summer. She had schedules, plans, and all sorts of intents. She basically told us (Nate and I were in our teens, at that point) that we needed to be more independent and take care of things on our own when he was home. Andy required that much focus. By the time she returned from dropping him back off at school, she was completely wiped out.

Ethan has four more days of school, and I have my plans. I know that we will eat breakfast, then do chores; that I have to make him work for his two biggest motivators, the computer or a DVD. I know we're going to do exercises and have a little music time and do crafts and be sure to have trips to the park and playground and who knows where else. There will be picture schedules and the play book and always, always talk about what's coming next, first this, then that, reminders and schedule run-throughs, again and again, to keep things going smoothly.

I look forward to having the kids home this summer. I love times like yesterday, when the three of us ran around the house and played hide and seek. I love cuddling with them, tickling them, hearing their laughter.

But there are days all I can think about was the summer after Dan and I first married, when we each took a stack of books out of the library and spent a week in Maine at our camp, doing almost nothing but swimming, laying in the sun, and reading them all.

All moms of young kids feel this way sometimes, I know. I think what makes it harder for me is in addition to sometimes missing the big moments, like kid-less vacations, I have trouble finding the smaller ones at times. Like waking up on a Saturday and not feeling the stress crowd in because of Ethan struggles on Saturday, the most schedule-free day of the week. Or attending a family party and just hanging out rather than needing to hang over him, because he's playing with someone's doors. I guess this is why I sometimes obsess about getting him to play. There are selfish motives as well. How I'd just love to say go play so I could just lie down on the couch for ten minutes and clear my thoughts, without having to think of how to engage him, entice him, or redirect him from something inappropriate!

I was thinking about all of this the other day, kind of whining to God, and in the middle of it all I heard that verse in my head: Be still and know that I am God.

Yeah, I know, I almost said out loud, sarcastically. I don't know how to do that anymore.

I felt in that moment God quietly reminding me that actually, I've never known how to be still. I've never known how to slow down. This is not a new thing. Autism isn't helping the situation, but it didn't create the situation.

How can I be still when I can't even find quiet time half the time? I demanded. He reminded me that quiet time is meaningless unless I learn to be still in the midst of the craziness, in the middle of the storms and stresses and moments when Anna is whining and Ethan is jumping on to the next thing before I can even catch my breath.

Being still is not lying on the dock reading blissfully. I mean, that's nice and I'd love the chance to do that sometime soon, but if I can learn to be still within, to hear His voice over the din of noise and slow my rushing thoughts, there is a part of me that will find that peace and calm I long for. The innermost part, from which everything else flows.

I'm always wanting Ethan to slow down. And meanwhile, God asking ME to slow down. I'm not even quite sure how to. But I know that I have to.

Friday, June 10, 2011

What Is

A few months ago, in line with my typical love for deep, gut-wrenching psychological flicks that cause me to weep unashamedly in the back of dark and half-empty theaters, I went and saw the movie "Rabbit Hole." The film stars Nicole Kidman and one of the guys from "Parenthood" as parents who are struggling to live life after the death of their four-year-old son.

In one scene, Nicole Kidman's character is talking to her mom, who also lost a son years before, to a drug overdose. She looks desperately to her mother for some glimpse into the future, some hope that there is a way to survive the unthinkable.

"Does it ever go away?" she asks her mother.

"No," the mom answers quietly, after a pause. "I don't think it does...It changes, though. At some point it becomes bearable. It turns into something you can crawl out from under and you can carry around like a brick in your pocket. And you even forget it for awhile. But then you reach in for whatever reason, and there it is. It doesn't go away. Which is -- fine, actually."

I understand just what the mom in the film was saying. She was talking about acceptance, of course. I have a somewhat different analogy. I wrote another poem the other day:

What Is

Someone said it's like a brick in your pocket.

But I think it's more like a piece of sandpaper held close to my heart.

Some days the friction seems to shred my insides,
all the while smoothing my heart into a better version than I ever could have made on my own.

There are people who completely bristle at the idea that autism is some kind of gift, that God has "chosen" the parents for this special mission or blessing. I can understand their sentiments. I can understand the fury at people handing out pat cliches, when they see their child struggle, when they as parents and as a family struggle. The more serious the autism, the more indignant they feel, the more difficult they find it to see any kind of blessing.

I get this.

All I can say is that this is not the kind of thing you can understand or accept if you see with ordinary eyes. My mom once said this, about not just Andy but about anyone severely handicapped, and their purpose in this world: "They show us unconditional love...and have the ability to draw that love out of others." Sacrificial love. Christ's mission, personified.

I think also of Beth Moore. She said something in The Inheritance study that often rolls around in my mind: "God's purpose for us in this life is not that we would be happy, but that our lives would have meaning."

If we are seeing with temporal rather than eternal eyes, severe disability, autism in it's most difficult form can be too much to bear.

If we are seeing in terms of the way we thought our lives would be, there are truths we will miss.

I don't think God intends autism as His perfect plan, but I know He allows it. Why? Because I prayed my child would not have autism. What do I do with that? What do I do with an unanswered prayer... unanswered at least, at this moment?

Accept this as what is, right now. Put on His eyes and see the gift of my heart turning into something more pure than it would have been, otherwise. See Him at work, even when my son struggles. Sometimes through his struggles. Know that "Our light and momentary troubles are achieving for us an eternal glory that far outweighs them all." (2 Corinthians 4:17)

Friday, June 3, 2011

From the Ruins

Last night I had trouble sleeping. I was thinking about my city. I was thinking about many things.

Several years ago I had a vivid dream. I always know when a dream is supposed to mean something because it is nothing like my usual dreams, which are little snippets of things my subconscious picked up throughout the day, mixed together. In this dream, I was back in Springfield, Mass., where I lived from age 10 1/2 in 1985 until 2003. I was in Springfield, and a tornado was coming down Sumner Ave. I stood outside the Bing theater and wrapped my arms around a small tree. As the tornado went over I screwed my eyes shut, hanging on for dear life, bending with the tree. Then suddenly the wind was gone. When I opened my eyes, everything around me was pure white. I don't remember seeing destruction. Instead, everything seemed to be covered with snow. My eyes were dazzled. I felt such a peace and calm come over me. Everything felt new again.

When I awoke I felt as if the dream had to mean something. I never thought that years later an actual tornado would roar in a straight line through Springfield, less than a half-mile from where the tornado had in my dream. And still I'm left wondering: What does it mean?

Last night I tossed and turned and thought of upheaval and distress and loss that Wednesday's tornado had left behind, the houses sheared half away and off their foundations and mammoth trees uprooted.

I thought about how easy it is to thank God when all is well in life, and how we ask, "Where is He?" during the storms. I thought about how many times I'd even done that in the past week or month. This isn't the way it's supposed to be, I've often muttered, about the way life is going, about the prayers not yet answered.

And something in me as I tossed and turned felt as if God was saying, "What you really mean is, 'This isn't something I can control.' Do you want things to go your way so you can move on and forget me?"

In the morning, I opened my Bible and went looking for Job. He lost his family. The great wind came and destroyed them. His body was afflicted with sores. His wife asked him, "Are you still holding on to your integrity? Curse God and die!"

Job replied, "You are talking like a foolish woman. Shall we accept good from God, and not trouble?"

I read that verse and realize how shallow my faith can be sometimes. I realized how effortlessly I can jump up and thank God when Ethan is accomplishing a new skill and I'm getting a great report on him from his teachers. Even more sobering is that it's so easy, on those good days, to thank God and get on with my day...kind of like a, that was great God, now I'm moving on to MY thing.

And yet what God asks is for me to cling to him the way I did in the dream, desperate, knowing all is lost without Him. Sometimes that is so easy to see in the midst of the storm. Yet when life gets back to just being life and not tragedy, how quickly our sense of how much we NEED Him diminishes.

What would life be like, I am wondering, if I clung to Him like that every day? I think...I think something beautiful and unimaginable would come from that -- like the sparkling snow in my dream, transforming my surroundings.

People love to throw around that cliche about triumph rising out of the midst of tragedy. I am already hearing some incredible stories about how people from inside the Springfield community and far beyond are coming together to help the city heal. I pray that continues.

I pray for all of us that we remember whatever trials we face are not for us to blaze through on the way to wrestling back control of our lives again. They are to open our eyes to a new way of living, day in and day out, a way of life where hope, our mood, our praise, does not spring from what's going right or wrong or what we have brought about with our own efforts...but from Christ alone and His continual working presence in our lives.

I'm preaching to myself here, more than anyone: God, help me to remember you.

Job never got answers on why that disaster that struck him happened. Instead, he got God. God, reminding him of all that He is. Our human minds struggle so mightily with this. We invest so much effort searching for answers to the wrong questions. We have trouble understanding or accepting the mystery... He is the answer.