Wednesday, September 29, 2010

Parenthood (as in the show)

Last night as I was multi-tasking in front of the television I stumbled across a show I'd heard about but never seen, Parenthood, on NBC. I'd heard little snatches of discussion about the show, particularly about the storyline featuring the child with Asperger's, but didn't want to get involved with watching for various reasons. One was really that I can't put another TV show on my schedule. Don't we all feel this way? Something's got to give. I've got to find more time somewhere to eek out completion of the things are on my to do list that are well, never getting done. Another big reason is that I dislike dramas that try to "do" big topics like an illness or special needs, or even feature a Christian character, because my fear is that they're just going to get it wrong. There's going to be too much cheeze, too much Hollywood, not enough research on what the experience is actually like, that I'd just end up angry.

But I started watching Parenthood, because I was doing something else on the computer at the same time. Then I got sucked in. There was the older sister, in high school (I could see Anna, in a few - gulp! - years). And the boy, Max (maybe 8 or 9?), with his mop of curly brown hair, eyes glued on a hand-held computer game. No, Ethan doesn't have Asperger's, it's basically known as a milder form of autism and usually diagnosed later, but I could see Ethan in this character. There was this scene where the extended family were gathered around the TV watching a baseball game. Everyone was shouting, yelling, cheering. Everyone except Max, who was intently focused on whatever this game was.

The dad, Adam, came over to talk to him. The dad, the oldest of two brothers and a sister, in whom I saw myself. "Max, don't you want to come over and watch with us?" he asked, trying to sound light-hearted, but you could hear the longing in his voice. Max didn't respond. The dad tried a few approaches. You could sense his desperation. Nothing worked, and so Adam left his son to go back to the game. As he did he saw his brother chatting and coloring with his young daughter, Adam's niece. They were sharing, giggling, just matter-of-factly talking. Just a typical moment with a typical family. The camera panned up and in a couple of seconds captured so many things in Adam's eyes...the sadness, the amazement at the ease of their interaction, the longing to make a connection with his own son like that, the fatigue with trying so hard.

Dan walked into into the room at that moment and I burst into tears. "What's wrong?" he asked. "What upset you?"

"I'm not sad!" I kept trying to say through my tears. "That's not it. It's that they GET it. Someone actually took the feelings and emotions I've felt just to a 'T' and put it up there. Someone understands."

I couldn't quite articulate what I meant. I still can't.

Later I read that the creator of the show has a son with Asperger's and has taken a lot of the story lines from his own life. I knew that before I read it, I think. The script was written and filmed like someone who had to have lived it. They were just actors reading lines with the lights on and cameras rolling, but they were telling a story, a bit of my story, my family's story and many, many others' stories. We didn't need it to be told in a prime time drama in order to be validated, but I guess that's how I felt. Validated. I just looked up that word, validate. Webster's says it is "to recognize, establish, or illustrate the worthiness or legitimacy of."

Growing up, I felt as if no one had a clue what autism was about, that maybe everything we were going through wasn't really supposed to be talked about. We were just supposed to deal with it. Thank God things have changed. Shows like "Parenthood" are taking small steps to show just an inkling of what so many families live with and struggle with. Just the tip of the iceberg, really. When it comes to autism spectrum disorders, one can underestimate the importance of this type of knowledge, which leads to better understanding, more empathy, and greater compassion.

Friday, September 24, 2010

The Gold Star

Two weeks ago we started a playgroup once a week at what will become Ethan's school when he turns three. I thought it would be a great way to acclimate him to the school and also get a little more exposure to a preschool-type setting. Over the course of an hour, they have free play, circle time, craft time, and snack time. So far it's gone, well...two steps forward and one step back is still one step forward, right?

Maybe the best way to demonstrate is to break the group down into increments:

Getting in the door: Week 1, Ethan walked right in but once he found himself in unfamiliar territory, began obsessing over the microwave, sink and paper towels, and tried to leave once. Week 2, Ethan refused to go in at first, remembering where we were, and instead sat on the floor outside the door. Once I got him to go in however, there wasn't much hanging out at the microwave/sink, but instead he sat on the floor and started playing with some floam (that stuff that looks like Rice Krispie treats that you can smush).

Free play with kids: Week 1, after 10 minutes Ethan went and played alongside other kids for 10 minutes, but then felt so overwhelmed he had to come back to me and start insisting on smushing himself along the floor for 10 minutes. Week 2, he wouldn't go over to the free play area but sat at a table alongside other kids, doing puzzles and playing with the floam and interacting a little with the helper in the room.

Circle time: Week 1, Ethan refused to join the circle, so we sat about 10 feet off and I gave him lots of pats on the back and squeezes to help with his sensory issues/stress. They did no songs in circle time (huh??) so that didn't help, but he did throw a ball back to Ms. Betsy, the group leader. Week 2 (joy!) they sang songs, including Ethan's all-time favorite, Wheels on the Bus, so I was able to inch him closer and closer until we were almost in the circle, and Ethan was grinning ear to ear at the song.

Craft time: Week 1, Ethan was excited to get to paint and did a pretty good job with the brush making his "apple." Week 2, Ethan saw the guy setting up paints and had an extremely hard time not dashing over there. Once we sat down he decided he wanted to paint his hand instead of the paper (his new big thing is finger painting, not brush painting). I helped him paint his "bus," but it was a bit of a struggle.

Snack time: Both weeks (of course!) he sat pretty nicely. Crackers and lemonade are such a nice motivator for all kids, typical or not so.

So there you have it. He's actually doing pretty darned well. What troubles me a little is how exhaused I think both he and I feel after we leave. His exhaustion I can completely understand. I really feel he's doing everything he can to keep it all together. If only I could totally "get" everything that's bombarding him when he does something like this. I've found that the less he melts down (week 2 vs. week 1) the less he interacts with kids, and I truly believe it's because it's taking all of his focus not to want to run out of the room, roll on the floor crying, or do some kind of stress reliever like turn on the sink or flush the toilet.

My own exhaustion is a bit harder to understand and even more difficult to describe. I guess, when we go there I find myself trying SO HARD. Maybe the better word is striving, and I don't mean that in a good way. I'm trying to make sure I get Ethan in the room. Trying to stop him from doing anything inappropriate. Trying to get him to engage. Trying to do everything I can to make him comfortable. Trying to make sure he doesn't tip over the paints or paint someone else or take someone's crackers. Trying to talk to other parents and trying not to talk too much or too little about his situation. I was trying to be brave and not care what anyone thinks, when everything in my human nature was crying out and protesting because there is nothing, and I mean nothing more I hate more in life than standing out from everyone else; being different. I have felt as if I'm trying so hard, I'm literally in a sweat by the end of the group.

And while I keep trying, sometimes unsucessfully, sometimes forgetting there is Someone nearby that could lighten my burden of responsibiilty, I try to remember to encourage Ethan for his efforts. "I'm proud of you for coming in," I whispered through my frustration in his ear, as he only wanted to sit on the floor at first. "I know this is hard for you."

This week there was a teenage boy from the Early Childhood Program at Windsor High School helping out. He greeted us just as we came through the door; I think his name was Steve. Steve has braces and a warm smile and is obviously gifted to work with kids. Right away he tried to interact with Ethan, making him shapes out of pieces of floam, encouraging him as he did puzzles, asking him for high-fives. Steve noticed when Ethan was having trouble not rushing to paint the yellow school bus and made sure we had the wheels to put on our bus before we left. Just before we went out the door, Steve walked up to Ethan and told him he had something for him. Then he put this on his shirt. Just Ethan, no one else:
Steve, if only you knew. If only you knew how Ethan and mom needed that. If only you knew how much it meant for someone to notice how hard we were both trying to make it through something that was difficult. If only you knew how much it meant to have Ethan recognized not for what he wasn't quite able to do, but for what he had. You're going to be a great teacher someday. Thanks.

Sunday, September 19, 2010

Just Keep Swimming

So, Ethan has a bit of this echolalia thing going in. He's repeating a lot of stuff back to me, verbatim, which isn't such a bad thing, unless it becomes excessive. He's also doing what I guess they call "scripting." He uses language in a memorized yet appropriate way.

Some kids on the spectrum will do stuff like quote entire scenes from movies or pull out a line they know from a TV show and use it in conversation. That's not what I'm talking about with Ethan; rather, he's taking phrases I often say and using them on his own. SO, every morning he wakes up and says, "An-NA, wake UP!" in a cute way, and no one except me would know that he says it in exactly the same way every morning, with the same intonation, my intonation. Every time we feed Zeke, he insists on "fresh water?" as well as food and then yells, "Zeeek! Come eat!"

An interesting byproduct to all of this is the realization that Ethan is a mirror of sorts of everything I say on a regular basis, day in and day out. He's a tape recorder. His words could betray me, especially as his understanding becomes more sophisticated. If I use a swear word, he would most definitely begin using it. If I always respond in the negative, of course he would do likewise. Ethan shows me what's coming out of my mouth when I'm not even realizing it. This first dawned at me at the park a few months ago, when out of the blue (so I thought) he began saying, "Be careful!" every time he walked up a really steep slide. Of course. That's what I'd been telling him, again and again.

In therapy the other day, with Diane: "One more!" he started exclaiming, every time he got close to finishing a puzzle or a button/zipper task. That's me, always urging him that he's almost finished.

His favorite lately is "keep going!" He'll say this while we're on long walks; while he's picking up a big mess; when he's doing something really hard that he doesn't want to do. When he did this the other day all I could think about was my very favorite movies, Finding Nemo, when Dory the fish shares her favorite little song ("What do I do when life gets me down? Just keep swimming, just keep swimming...").

The fact that Ethan is repeating these things brings a smile to my face, because I have not been known to be the most positive with my words. Ever. I've most likely dragged other people down over the years with negativity. I've certainly dragged myself down. Yet Ethan is hearing Keep going and Good job. And a new one I'm trying to remember to add: You can do it. (Or maybe it should be "I can do it," if he's going to repeat things literally, but whatever).

These are the phrases we all need to breathe in and live. If there ever was a case for echolalia, for repeating a script, this would be it. I can do this...I can do all things through Christ who gives me strength. Keep going. Don't give up. Just keep swimming, through both the dark and the shallow waters.

Wednesday, September 15, 2010

Manchester Memorial, Conference Room B

This week I took the plunge and attended an Autism Support Group. I can proudly report that no one tried to push crazy biomedical treatments or convince me I could just make everything better if I took up this therapy or that therapy (this was my fear, due to reports from other parents). The evening also wasn't completely depressing and filled with non-stop complaining. I was rather nervous about being dragged into a pit. The words that actually come to my mind when I think of the evening are constructive and ecclectic.

In regards to constructive: in about 15 minutes, for example, I learned of a great person at Cost Cutters who might be perfect for Ethan's trouble with haircuts; a pediatrician in South Windsor who's very knowledgeable about ASD; tips for going in for Ethan's IEP meeting; and the rumor that right now word on the street is that Windsor's autism program is even better than (gasp!) South Windsor's. I also was able to dole out a bit of (hopefully useful) advice to others.

By ecclectic, I mean the people there, and their kids' stories. There were about 12 of us. The oldest was a woman in her seventies who has a 50-year-old son with autism. The youngest couple had a two-year-old just diagnosed last month. There was a woman who's son had just been diagnosed with PDD/NOS at age 20. I thought one of the men there was actually an adult with autism...turns out he grew up with a learning disability and now has a daughter with severe autism. Three or four people there had daughters with ASD, actually. One person had three out of four kids on the spectrum.

Everyone had a story. Some people talked too much. The woman leading the group seemed more interested in finding someone to replace her next year. It was an ecclectic, imperfect group for sure. Some of us with younger kids I think dominated the conversation at the end, and I felt a little bad. Some people were probably scared away, although I hope not. Maybe they can take over the conversation next time. We all have things to learn from them.

Next time. I will be back. I'll be back, because not only do I appreciate the support and commardarie, but there was something else I was thinking, as I looked around the table.

Everyone there looked tired. Many people seemed weighted down by life, jaded by their experiences. I know I am a new kid on the block, still fresh and without the disappointments many of them have had with the schools, with friends and family, disappointments perhaps with how their child has progressed compared to where they hoped he or she would progress. I know all of this, but one thought that kept coming to me was, "How can I be a light?"

I want to be a light. I want to show them the hope of God's love and promises. I'm not quite sure how. I'm not very brave. But wanting to is the first step.

Monday, September 13, 2010

Different, But the Same

On Friday we had our first MOPS meeting of the new school year. This is my (gulp!) sixth year doing MOPS and I've always enjoyed it. Over time, I've seen my role change and grow. First I was a newer mom, and while not the youngest in the room, I certainly had less parenting experience than a lot of people there. In the past year or two, I've noticed I've drifted up to the "seasoned mom" bracket. There are new moms in their twenties coming in, with newborns. I'm in a different place now. I can offer my so-called expertise, and at the same time can't always relate to their lives-with-very-little-ones.

This year, I've found I have a new role. It feels kind of unnatural and not quite formed, like one of Anna's new teeth coming in. I'm the special needs mom. I know I have something to teach, something to show, something to learn. Just what? I'm working on that.

In some moments at MOPS, I was just a mom like any mom. I have kids yet want to have a life outside of them. I enjoyed sharing about myself, learning about others, and swapping ideas about this whole crazy adventure. Yet, there were moments... watching the video, and hearing the mom lament good-naturedly about the mischief her kids were getting into. I kept looking at the toys everywhere and thinking, I would LOVE for Ethan to do that -- to dump out every toy and explore each one. To experience more of that sheer curiosity of childhood.

...or someone complaining about their kids fighting all of the time. I couldn't help but think, If Anna and Ethan fought a lot, that would mean they'd be interacting more. That would be annoying yes, but wonderful at the same time.

...or the mom on the video again, talking about how she would like to foster her son's interests and dreams, and teach him to grow and go out into the world on his own. My first thought was, Can my son be anything he wants to be? Will he ever be totally independent?

Going to MOPS most certainly reminds me that there are issues with having a special needs child that go over many peoples' heads -- and that's not their fault. These are the types of thoughts you just wouldn't entertain unless they were right in front of you, right in the center of your heart.

But the story doesn't end there.

At the beginning of Friday's meeting we did an icebreaker in which we asked each other different questions written on index cards. One was, "Talk about something cute your child did recently." I stared at the card, and nothing came to mind really about either kid, but Ethan in particular. That fact gave me pause, and the more I stood there thinking, I realized I was bothered not because Ethan hadn't done anything "cute," but because in reality there were plenty of things I could have mentioned, but perhaps held myself back because someone else might not have seen it as cute, might not have understood. "Ethan's learning to sing "Doe a Deer," I could have said, and yeah he'll be three in a few months but this is big, considering he couldn't string words together in a song until a few months ago. I could have told them about his affinity for storm drains or that he loves the triangle shadow the door to his room creates at night. I could have mentioned how he loves the dolls at Target because they all are motion-sensored and start chatting and talking at once and he thinks that's just crazy, or the way he loves to pound on the keyboard.

I could have and should have said any one of these things, because in truth, who is to judge what is cute, which stories are worthy to share, and what deserves to be celebrated? Ethan may be different, but he has a story to tell, he has a purpose, and he has funny and cute and adorable things that he does. They just might need a little more explaining. But they are still wonderful in their own right.

And could it be that others need to hear Ethan's stories, my stories? That by being silent I am holding someone back from developing more compassion and understanding for those without typical kids?

When I went to drop Ethan off in the nursery that morning, I was prepared. I had my notes on Ethan in case someone new was there. I had tips on toys that he liked, how to calm any crying, about his obession with the garage door toy when he's nervous and phobia of static on the TV.

"Oh yeah, we know Ethan," said one of the women. "I never even noticed that we had to do anything different for him," she said, which kind of left me suprised.

"Well, these are his notes," I said, waving my crinkled paper, "because he does have his quirks."

"Don't we all?" she asked with a wry smile, this older, wizened woman who has gone through some very serious health struggles in recent times. I knew in some ways she was wondering what all the fuss was about.

Why be normal? questioned a pin I used to wear back in junior high, which was a joke since I spent most of my life then and long after trying to fit in to just that definition. This sounds like a lesson in self-esteem that I might have learned in school back then, but what can I say? Being different is not the worst destiny that can befall a person. And most of the time, the gulf between different and not, normal and "quirky," is smaller than we've been led to believe.

Tuesday, September 7, 2010


Fall is coming. September has arrived, which means we are quickly approaching D-Day. We've almost arrived at the one-year anniversary of Ethan's autism diagnosis. Amazingly, as someone who considers herself almost autistic/savant-like about recalling specific dates and anniversaries, I am not sure I remember the exact day. September 23? September 26?

I can't believe I don't remember, because I'm serious about the whole thing with me and dates. It's a little (or maybe more than a little) freaky. I remember the birthdays of people I haven't seen for 20 years, people who weren't close friends (Becky the McDonalds manager: January 27, Sandra from 2nd grade: December 26). The day Dan and I started dating: July 26, 1994 (also my friend Jodi's birthday, mind you). My first day at Baystate Medical: October 27, 1997 (which was incidentally exactly seven years before the Red Sox won their first world series). The day my school bus got into an accident and two police officers in Springfield were shot and killed: November 12, 1985. I have always been particularly good at remembering the specifics about tragic events. That must be the melancholy in me at work. The Challenger explosion occured on January 28, 1986. That TWA flight that exploded off Long Island? July 17, 1996. See what I mean? I'm scaring even myself.

Yet Ethan's diagnosis date is not emblazoned in my mind, and here we are a little less than one year out. I could tell you about the day. I could talk about driving to Connecticut Children's in Hartford, my heart pounding, praying yet not sure what I was praying for. I wasn't praying for him not to get a diagnosis, because in my heart, something deep down told me he would be getting one. I suppose I was praying for God to be near when it happened. I could talk about taking the elevator up to Dr. Milanese's area (developmental pediatrics) and rolling Ethan's stroller into a very small room. I could mention the conversations we had there while he whined and tried to leave and then our move to another slightly larger room where the speech pathologist (Jennifer) waited, about the toys Ethan ignored and the notes they both scratched. I could talk about them coming back to me and gently saying that yes, they did feel Ethan had autism, then Dr. Milanese tempering her words by saying I shouldn't see this as a rubber stamp, and (having heard my brother's history) that I needed to know she was sure Ethan was not my brother, that his story would be much different.

I could talk about any of those things that happened on whatever day that was, but what most sticks in my mind is this: just as I turned at the entrace to CT Children's that morning, a song came on the Christian station I sometimes listen to on XM radio. I'd heard it many times before and many since. I've always loved the song "Stay Strong" by the Newsboys. Ethan likes the song too, and even then enjoyed listening to it online and banging out the drum part on our computer desk. I was too nervous to sing along, but I drove and mentally joined them in the chorus:

Stay strong
You are not lost
Come on and fix your eyes ahead
There's a new dawn to light our day, our day
You've gotta stay strong
You and I run
for the prize that lies ahead
We've come too far to lose our way

I pulled into the parking garage and began to lose reception on the radio. No! my insides called out. Come back! Anxious tears began filling my eyes.

Just as I parked, the reception came back.

Get up, there's further to go.
Get up, there's more to be done.
Get up, this witness is sure
Get up, this race can be won
This race can be won...

I knew; I heard. God was talking. The drums in the song pounded and I breathed in the extra ounce of courage I needed. I turned off the car, my eyes and head suddenly clear.

Later that day, later in the following weeks and months there would be tears and anger and denials and frustrations, and yes, even despair and hopelessness. But when I go back to D-Day, that's not what I recall. Instead I hear the song in the car. And remember His faithfulness. I don't thank God for autism, but God, I must say it again. I can never say it enough.

Thank you. Thank you for showing me right from the start that we were setting out on the race of our lives; that it's a marathon, not a sprint; and never, ever, are we running alone.

"Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perserverance the race set before us. Let us fix our eyes on Jesus, the author and perfector of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God." -Hebrews 12:1-2

Sunday, September 5, 2010

When the Hurricane Passed

The other night we decided to go out for ice cream. Hurricane (or tropical storm) Earl was passing far to the south and east and denying us the good soaking rain we really needed. Instead all afternoon we'd been tantalized by sprinkles and small bursts of wind here and there.

Our little trip out that evening was okay. Not great; not horrible. Just okay. Ethan didn't really want to sit at the table in the ice cream shop and eat his dish of strawberry. He wanted to play with the door on the soda machine. Or attempt to go outside. We looked for the train but it wasn't there. Anna kept rambling in her usual six-year-old chatter and I tried to concentrate on what she was saying while also making sure Ethan didn't dash into the street to go look at another of his treasured storm drains or manhole covers. He cried for a moment about not going to see the fountain on the town green. No major disasters. But nothing spectacular. We'd had meatloaf for dinner. I picked up milk at CVS while we were out. It was that kind of evening.

As we hopped in the car toward home I suddenly decided to turn down route 159, which runs through the historic part of town. There was a road down that way that was nice to drive around sunset. We turned and hadn't gone more than a half-mile when Dan saw it. "A rainbow!" he exclaimed.

The rest of us couldn't see it at first. We kept winding around the road, craning to see through the trees. Then we took a right turn and there it was, in all of its glory, just above us. The rainbow swept over us, magnificently. I was reminded of my visit to St. Louis, years ago, of driving away and seeing the arch rising up behind us. Except here we were driving through the rainbow, under the rainbow.

Anna happened to have her children's Bible in the car. She took it out and found the story of Noah's Ark, and started reading to us the concluding lines in the story, about the rainbow. Less than three minutes later, the rainbow was gone. The sun must have shifted, and there was absolutely no trace left.

I went poking around online just a minute ago for a children's version of the story (Anna's Bible is who-knows-where right now). This is what I came across, from a page titled "The Rainbow and the Promise:"

And then God said to Noah, "Look up in the sky."

Noah looked up. The storm clouds were drifting away, the bright son was shining against Noah's back. And against the dark grey sky, God made a brilliant rainbow appear. God said to Noah,

"You see, I have set my rainbow in the sky. This will be the sign of the covenant I have made with you and all creatures, to never again destroy the earth by a flood. It will always remind us of the promise made between you and me."

So the next time you see a rainbow, think of Noah and the flood. Remember that God loves you, and no matter how bad the storm, there will always come a bright new day.

That is God's promise, and God always keeps His promises.