Wednesday, September 28, 2011

The Beauty of "Hi"

We were in the very same Target, I believe, the first time it happened. I remember pushing the cart up to the check-out counter when Ethan was maybe nine months old, sturdy enough to sit up on his own, little legs kicking.

I remember the way the cashier tried to coo and make faces and flirt with him the way most of them (the ladies, at least) do with babies and toddlers. Only Ethan looked the other way. In fact, every time we shopped and would get to the checkout, he'd look at the cash register and the amazing beeps, blips and lights. Or -- and this is what would make my blood run cold -- he would look straight through the cashiers and their overtures as if they weren't there.

The other day we were back at Target. Sometimes I think we live in Target. We certainly have the layout memorized and I'm probably personally keeping our local one in business. Ethan wanted to get out of the cart and walk. We went up to the counter to pay. He stood right below the cashier as she punched in numbers, completely focused on what she was doing. He looked up at her and said it.


Then again, a little louder. "Hi?!"

He was trying to get her attention. He was trying to make a connection.

The woman looked up. "Oh, I'm sorry!" she exclaimed. "I didn't hear you saying hello."

At three years, nine months and 24 days, Ethan said his first unprompted hello to a store employee. And I was about to do a happy jig all the way out the front doors. I was probably grinning as ridiculously as the Cheshire cat.

Every single person who has ever said that once you have a child with special needs, you appreciate every teensy-tiny milestone is absolutely right. And so I am celebrating Ethan's "hi"s: the unsuspecting cashiers in Target and Big Y, innocently scanning my groceries and having no idea of the miracle I am marveling at the kids on the school playground, running to do what kids do, usually not answering, but not deterring my son the boy at the park yesterday, the boy who I learned from his mom is just three weeks older than Ethan.

"Hi," he said to Ethan, standing below as I pushed Ethan on the swing.
"Hi," Ethan answered.
"What's your name?" the boy asked.
"My name is Ethan," he replied.

An introduction. A conversation.

Grasping a pencil and writing a letter. Sounding out words and reading them. Saying "I'm sorry." Drinking from a big kid cup. Saying "hi" to another person without being prompted. I cannot forget now, I will never forget, how precious each of these moments are. And I am grateful for that.

Monday, September 26, 2011

The Sweetest Song

It was a dreary weekday afternoon, and I was sitting in the swivel chair quickly browsing something on the computer. Ethan was sitting next to me.

He began to sing.

Ethan is often singing. He loves to sing. He's often commented on the way he sings perfectly on-key. He sang entire songs long before he spoke in sentences. Lately, he's begun making up little songs.

This one was different.

He started nonchalantly. "I love you, Mommy..." I thought he'd hum a few bars and then trail off. Instead, he began to sing louder. "I love you...I love you...I love you..."

Of course, he had no way of knowing hours earlier I had been listening to a minister I highly respect online. She had been talking about healing for our emotions, about the way the damage our past and our poisoned thinking can inflict on our present.

You will never completely overcome the hurts in your soul until you get a revelation of how much God truly loves you, she had said. And in that moment I had asked, "Why is it still so hard to believe sometimes?

Here we were, in the chair. Ethan was singing, and his song rose, a little louder, a little more insistent. He was looking me straight in the eye. He wouldn't tear his eyes away.

I love you.

He took one hand and brushed a strand of hair away from my eyes. Those eyes filled with tears, because Ethan was no longer singing. God was singing. God was singing straight to my heart.

In another moment Ethan was Ethan again. He switched tunes and looked away and starting being his usual silly, goofy self, making up words to something he learned at school.

In church yesterday the sermon was about, wouldn't you know it, God's love. Someone is trying to get my attention.

"Loving God has its starting point in God loving us," our pastor said. Even when I have trouble believing it. Even through a song. Even through my son.

Friday, September 23, 2011

(Not) Crying Over Spilled Milk

It was early Thursday evening. Normally I'd be home with the kids, hanging out, playing outside, or getting started on dinner. But today we were in the car headed to the church. I was volunteering for Saturday's big consignment sale.

The kids went into the church nursery where another mom had agreed to keep an eye on the kids of other volunteers as well. Ethan eyed the TV warily as she put a DVD on (he's had a thing about movies in that room since someone left it on static for about 20 minutes one day when she couldn't get it to work). But he seemed fine. Quiet, but fine.

I did my thing, hauling box after box of used toys to a back room. Dan showed up after an hour and said he'd take the kids to get some dinner. "I'll be home soon," I told both kiddos, and went back to work. "I don't like this!" I heard Ethan saying, as he looked over the toys and clothes and bustling activity. "I don't like this."

Simple enough, right?

An hour and a half later, I was home and eating leftovers. "Ethan's been really whiney since I took him home," Dan told me. "He keeps talking about milk."

Ethan was sitting on the couch. He looked unsettled. "We'll get more next time," he was saying. "I dumped it in the trash." I looked to Dan for more.

"I caught him dumping the last of his milk in the trash at the restaurant," he explained. "He didn't seem that upset at that time."

"Ethan, what's wrong? Are you sad?" I asked. His mouth was turning down into one of the biggest pouts I'd ever seen, and he was doing that shuddery cry thing. "I..I..I'm not sad," he said as he burst into tears again. "We need more milk!" he wailed. "I threw my milk in the trash! We have to go to the restaurant and get more milk!"

I sat there, racking my brain. I reassured him that it was okay that he'd dumped out his milk. We had more at home. It was an accident (maybe?) and next time he could have more milk at the restaurant.

"I threw it in the trash!" he kept wailing emphatically. "We'll get more milk next time. We have to get more!"

I thought back to Sunday at the church picnic, swarming with hundreds of people at a local park. Ethan had suddenly clicked into Mr. Insistent -- he HAD to pull the wagon we had with us, immediately. Two seconds before, it hadn't mattered, then it was all that mattered. "Ethan, are you scared?" I had asked him. "I'm scared of the people," he answered. He was overwhelmed. The nearest comfort he had zeroed in on was the wagon.

Sitting there in the living room I knew what was happening in front of me had not much to do with the milk at the restaurant. My boy was overwhelmed, and it had all come to a head the moment he had overturned that little carton in the garbage can.

I sat next to him on the couch. I lowered my voice and rubbed his back. "Were you scared at the church?" I asked.

"Yes!" he cried, shuddering.

"You didn't like all the people and the mess, did you?"

"Nooo...and I dumped out the milk in the trash!" I gave him a hug; said a prayer; whispered that it was okay. I told him the clothes and toys at the church were for a big sale. People were going to buy them. Then they would be gone. We got him more milk and he gave us pretend sips. He talked a bit more about the milk. But he started to smile and laugh.

My boy has been doing so well lately. His natural personality is so easygoing, and lately at school he's been so "go with the flow" that sometimes I forget to see through his eyes.

I rewound the afternoon in my head. I saw us doing something completely off our normal routine -- going to church on a Thursday, no less! The kids staying in the nursery with a different helper and different kids and Ethan having the dreaded movie on. I saw in my head the church basement the way Ethan saw it...empty halls and rooms suddenly transformed into this mass of people and racks of clothes and boxes and toys piled on tables ("I don't like it!" he had announced, after all). And then Dan coming out of nowhere and taking them to eat somewhere, without me, when normally we'd be home eating around the dinner table.

Sometimes Ethan can be so quick and adjust so well that we get lax. We forget that taking the time to spend five extra minutes explaining a change in routine can make all the difference in the world.

Sometimes we forget to see through the eyes of autism. Then, something happens and we're reminded that behaviors are rarely just behaviors -- they are communication. Ethan sobbing about the milk was Ethan trying to tell us something. He was overwhelmed and distraught. And suddenly all of those feelings landed squarely on the milk incident.

I think of my own life, how the last thing that happens on a bad day can be the tipping point that pushes me over the edge. The tears and yelling when I bang my leg on a chair is really also about the argument I got in that morning...the repairs the mechanic called about...the messes the kids didn't clean up...the project I didn't come close to finishing.

We all have days when we're overwhelmed. People on the autism spectrum I think have more of them. I think of what it would be like to be overwhelmed by sounds and sights the average person would not even notice. I think of how hard they have to fight to hold it together when plans are changed, routines are altered, and things don't go the way they normally go.

I think of how many people on the spectrum are unable to share that they are overwhelmed...scared...stressed -- that there are parents who long to hear their children say, "I'm scared. I'm worried. I'm sad." We all want to know what's wrong so we can try to fix it.

It's frustrating that Ethan can't always just "go with the flow." But I'm so grateful he can tell me when his natural order of things has been deeply disrupted. Even if it's in the language of spilled milk.

Friday, September 16, 2011

Say What You Need to Say

Most of us have noticed that kids just say things. My mom used to tell a story about my uncle, when they were kids. Apparently a, shall we say, rather large woman came to their house for dinner one day and proceeded to break a chair.

My grandparents were aghast and responded with the usual niceties. "I'm so sorry...I don't know how that could have happened..." That's when my uncle, who was in elementary school at the time piped up, "I know why it happened. It's because she's so FAT."

Kids don't mince words. And the same goes for people with autism. A difficulty understanding nuance and social cues means people on the spectrum don't always have the ability (and maybe patience?) to put on the little dances we do with our words.

...the "I'm fine," to the "How are you?" question, even if we are far from fine.
...the white lies we tell in order to preserve a friend's feelings.
...the compliments we perhaps don't really mean but rather toss out as a way to start a conversation or make an acquaintance.

People with autism, because they are so literal, say what they really mean. If they have the ability to be verbal, they are going to tell you exactly what they are thinking and exactly what they need.

"I NEED the doors," I always talk about Ethan telling me, when he was upset about me interrupting his obsession with opening and closing them. Lately, though, Ethan hasn't been talking about doors. He's been talking about the way he needs me.

"Sit with me on the couch and give me a hug," he orders before we leave for school each day. And at school as we are exchanging goodbyes: "I need a kiss."

When I told him the other night I had to go out to a meeting, his face crumpled. "No," he replied. "I need mamma. I need her."

The other day, on the couch as he played: "I need you to sit next to me." And another time, wanting a little back rub: "I need you to touch me."

Something happens to us as we grow older. We start out expressing how we really feel and get our hearts stomped on. Or maybe we say the wrong thing and hurt a friend, lose a relationship. We act ourselves and are ridiculed so we learn how to be someone else, to be a different version of ourselves. We grow weary of rejection. We forget what it's like to say unabashedly what we mean...what we need...what's right in the middle of our hearts. Instead we dance around subjects and leave subtle hints and hope desperately that someone will read between the lines.

Transparency is so risky. And there are real risks, real opportunities to be hurt.

But sometimes I wonder what it would be like to take Ethan's approach with the people I love. To throw caution into the wind and just say it. Not exploding in anger, but just expressing the needs I have down deep with those close to me with wisdom, but complete openness. Now John Mayer is running through my head: Say what you need to say/Say what you need to say...

I look at my son and I'm reminded how much we don't say, because we are afraid. Then I think that there is a better way. I think how I could live life playing fewer games, and talking maybe not necessarily more, but straight from the heart.

Wednesday, September 14, 2011

Fighting for the Unknown

The autism support group I attend started up again the other night, and there were a few new people there.

One immediately captured my attention. There was something magnetic about her. She was big both physically (very tall) and in personality as well. Apparently she just turned 40 but looked 10 years younger...yet when she spoke, she seemed mature beyond her years. Her son was diagnosed with autism six months ago at age 2. Yet the depth of knowledge she'd already collected about autism, local therapists, treatments options and educational approaches made her come off like a veteran. She exuded confidence, assertiveness and optimism. I wanted to stand close to her just to see if some of it would rub off on me.

In the parking lot after the meeting she, I and another autism mom stood talking. She had told us what it was like to witness her son drift away literally in front of her go from saying words and flirting with strangers as a one-year-old to being completely non-verbal, with a vacant look in his eyes. The story sent chills through me. She talked about how he was responding well to therapy, though, and how she was willing to fight tooth and nail to get her son into the best possible school in the area.

"You never know," the other woman with us said. "Some kids even lose their diagnosis."

"That's my goal," this new mom answered quickly and firmly.

Ohhhhh, I thought.

Silently and simultaneously I was thinking many things. I was thinking about those early days after the numbness wears off, somewhere before reality and acceptance sink in there is this fire inside you to set everything right. Everything you read fuels it. Everything everyone tells you fuels it. You have this voice echoing in your mind whispering Early intervention is key -- maybe if I tried this therapy -- How many hours can we squeeze in every week? -- If I can just get him to talk/make eye contact/make friends it will all be okay -- Maybe if I try this doctor -- Maybe if I try this diet -- What about what that person said? -- What about that book? -- What about....what about...what about...

As we stood out in this parking lot in the dark I started to clear my throat. I was actually going to get up on my pulpit, wag my finger and say something like, "He may lose his diagnosis, but you have to learn to accept him for who he is if that doesn't happen." Very quickly I realized how tremendously condescending and self-righteous I was going to sound. These are not lessons that can be hammered at you by anyone, even a well-meaning person who's been down a similar path. These are lessons that are learned. They take time and usually involve a tremendous amount of pain. I'm still learning.

I didn't want to preach, I realized. I just worried about the fall. I worried about that possible moment when, after 2 or 3 years of dedicating life to helping her son beat autism, she learned he was very much still on the spectrum.

I thought about that, but didn't say a word, because in the same moment I remembered this: there is something very vital about that gung-ho phase I think many parents of special needs children enter not long after they receive a diagnosis. It's called hope. Planning treatments, going to therapy, learning more about how to help your child keeps your mind focused and present. Feeling as if you are doing something is eons better than feeling you are lost and powerless.

So many of us feel so frustrated when we hear our child has a disability, and no one can really tell us what the prognosis will be. We hate the unknowns. We hate the what ifs. But maybe they are a gift. The question marks can either send us on a downward spiral as we fret about our lack of control, or spur us to keep trying, keep working, to not ever, ever give up on our child because you just don't know what the future holds.

I HAVE known kids who have lost their diagnosis. One of their moms actually had attended the very support group we'd just left.

"You never know," I nodded my head in agreement. I could see the smile and resolve in her eyes. We said our goodbyes and headed out into the night, looking forward to the next time we would all meet up again.

Tuesday, September 13, 2011

6 Moments that Made Me Want to Yell and Laugh

I going to title this post "Pee Waterfalls and Poopy Roads," but I didn't know how well that would go over.

I've been mired in a deep sea of introspection lately and really could use a humor break. You know you've been thinking too much when you catch yourself outwardly nodding your head as you relive a conversation you had with someone a few days prior. Thank God I was in my kitchen, alone.

A couple days ago I was thinking of those moments with your kids that initially make you want to cry or scream, but you later end up laughing over. I know for my mom two big ones on the list had to be me and my friend sailing boats in the toilet, and the time I used a ball of yarn to create a spider web in my room, and subsequently ended up trapping myself in a corner and having to call for help. Neither of our kids is especially devious or mischievous, but they've had their moments. These are a few that come to mind. I find it either amusing or troubling that most of these involve bodily functions or the bathroom in some way, shape or form:

1. Ironically, since it's so often talked about in relation to kids on spectrum, it was Anna who enjoyed playing with the contents of her dirty diaper for a brief time when she was between 1 1/2 and 2. One day I came up to retrieve her after naptime and found it everywhere. My daughter was essentially fingerpainting with poo. When I walked in she was spreading a very dark path down along the crib railing. "Look mommy!" she announced with glee. "I made a poopy road!"

2. During potty training, Ethan had an accident in his underwear. I put the soiled pair in the toilet to soak for just a moment and turned to wash my hands. Ethan, attempting to be helpful, then flushed the toilet. We never saw those undies again. I hope they are not lodged in a pipe somewhere, ready to wreak havoc with our plumbing at a later date.

3. Last week I heard Ethan washing his hands in the bathroom for an unnaturally long time. This can't be good, I thought, and went in to check on him. I found the entire floor and walls soaked and dripping. He'd been putting his hands under the water blasting from the faucet, forcing it all over the place. "Look mom! I made a sprinkle tower!" he announced. Thank you, Better Not Get Wet, Jesse Bear. Ethan was indulging his current extreme interest in hoses and shooting water to the ends of the earth.

4. When Anna was about three she was playing with My Little Ponies while I was making sauce from fresh tomatoes. My hands were covered with goopey tomato contents and I was quite mired in the process. I knew Anna had one other pony with her batch of My Little Ponies, a brown one with shaggy hair we'd gotten from Target that we called "Pony Daddy." I also knew it was very quiet in the other room where she was playing. "How's it going in there?" I called out to her. "You just focus on making the sauce," she answered. That was cause for alarm. I washed my hands and peered around the corner. She had the scissors in her hand and was hacking away at Pony Daddy's hair. "He needed a haircut," she explained. "He's a boy."

5/6. Ethan was upstairs recently alone for a bit of time, in our bedroom, of all places. You know how this is not usually a good thing. "What are you doing up there?" I called. "I'm going to make a waterfall," he answered. "With what?" "With my penis," he answered (sorry for that, but that's just how he said it). In two seconds I was up the stairs, deciding that this was indeed the perfect time to start teaching Ethan how to pee standing up. Right around the same time as the pee waterfall, Ethan starting unraveling most of the toilet paper off the roll and letting it all cascade onto the floor when he'd make trip to the bathroom. I understood why when he announced, "I made a big waterfall!" proudly one day. And it's true. It DID kind of look like a waterfall. I had to give him points for creativity.

"No" Means "Yes"

I remember reading an article by another mom of another Ethan who coincidentally has autism. "One of his refreshing quirks," she wrote, "is the way he never asks for things" (i.e. toys in the store).

For the longest time, our Ethan was like that too. We are just now getting into the phase where he will start whining in the grocery store for us to "go to the macaroni and cheese aisle," or announce "I need peanut butter!" And in toy stores, every once in awhile I will hear, "I want that." Normally, though, I am still the one wooing him with toys.

"Ethan, would you like this car?"
"Ooo, look at this game?!"
"Should we take this toy computer home?"

About six months ago we were in Barnes & Noble perusing books. Anna is a voracious reader and of course begged us to buy some. If she'd had her way she would have walked out of there with a stack piled to the ceiling, the way she does at the library. We agreed to purchase two small books for her. Then I realized Ethan needed a book, too.

"How about this book about trucks?"
"A letter book?"
"No book!"
I grabbed a Dora the Explorer book about going to the doctor. "This one?"
"Noooo! I don't want it!!"

Ethan was practically crying. In that moment something told me to buy the book anyway. It sat in Ethan's room for about two months, crisp and untouched. One day I spotted it before nap time and asked if we should read it. You can guess what the response was. But then I spotted one of his favorites (Chicka Chicka Boom Boom? Goodnight Moon? I don't remember) and decided to strike a deal.

"If you read Dora, then we can read THIS." I pointed to the desired book. Bingo! The funny thing is, within a few weeks, the Dora doctor book became one of Ethan's favorites. Soon he was begging to read it. The next visit to his pediatrician, he was pointing out all of the different instruments in the exam room. And through the one familiar book/one new book reading deal, we've introduced Ethan to numerous other new books he's ended up enjoying.

This is how I learned that with Ethan, "no" does not always mean "no."

Lately on our way-too-often trips to Target I'll suggest toys and will be met with a rather tepid response. Every once in awhile I toss something into the cart (like Matchbox cars). I let them lie around for a few hours or a day before quietly opening them and beginning to play with them myself. And usually, if I'm very quiet and casual and nonchalant about the whole thing, I can then look up and see him watching me from across the room and ask, "Do you want to play?" He'll then come running over and join me with his new toy.

With autism, new is overwhelming. Different can be stressful. Pressure and undue expectations make the situation worse. Throwing in the towel can't always be the answer, either. Knowing when to do which can be a frustrating process filled with trial and error.

Sometimes we push too far. I tried to make Ethan do a class at the library because I thought he could handle it and could get through that initial fear and trepidation about something completely new and different. He was pretty miserable. Other times I've gone against common sense and tried to force him through something, like the roller coaster I knew he'd love if he could just get over the fear and sit down, and met with wonderfully awesome results.

Ethan always tells me he doesn't want to go to the special music class he attends -- but ends up loving it every week.
The first eight days of school, he told me he didn't want to go and that it was too scary -- but came out every day with a smile.
He constantly tells me "no" when I offer new foods, but every once in awhile he finds one he actually enjoys.

Whenever I send him off with the grandparents or even to school, I feel as if I have to tell them they shouldn't always take his "no's" as "no's." Really they are often more like "yes's" hidden under a layer of trepidation and discomfort with newness and change.

And when I think about that, that's not so different than the way most of us react to many things in life. At least I do. Dan suggests a new restaurant but I had my heart set on an old favorite. Or he wants to see a movie I've never heard of and haven't checked the reviews for, and I protest. Someone asks me to do something I haven't done before...speak to people I don't know...take a different approach to a familiar freelance project...and I freeze.

God asks me to take a step out of my comfort zone. God asks me to do something difficult and scary. And right away, my knee-jerk reaction is "No!" Sometimes He'll wait. Sometimes He'll gently prod me. Sometimes He just makes me take the leap and DO IT. The method changes. But the goal is to move ever-closer to the "yes" that, in the long run, will reap more benefits than I can imagine while locked in my fears.

Sunday, September 11, 2011

Who Am I?

The puzzle piece is often used as a symbol for autism, due to the complex and sometimes baffling nature of the disorder.

Sometimes, however, I'm the one who feels like the puzzle.

Back when I was in high school and even before, I was one of those who couldn't fit into a group or be classified. I wasn't popular but I wasn't an official nerd. I was smart but not really smart. I wasn't known for my talent at any one thing, but had my hands in band... chorus...writing. I had no enemies but not many friends. I was essentially an unknown. At the end of my senior year, a guidance counselor actually said to me, "You are ranked 22nd in the class -- why have I never heard of you?"

I went to college but commuted, so I had one foot at school, the other in my old world of work and home. After getting married, I worked full time, then part time, then from home. I've never been officially a stay-at-home mom, but I'm for the most part disconnected from the working world as well. I loved singing at church but then stopped when Ethan was born. After Ethan's diagnosis I did much of the "autism stuff" and still do, but I just don't feel like the Autism Supermom -- the one who organizes a team of 100 for the Autism Speaks Walk and attends every autism support group, fundraiser, conference. Through the years I've often wondered: Where do I fit? How should I best be using my talents and my time?

I've had trouble getting to know special needs parents. I've had trouble getting to know most people, really, and sometimes I think it's because I have my feet in so many worlds. Then other times I think, maybe it's me.

Maybe I haven't invested the time.
Maybe it's because I'm afraid.
Maybe it's because I don't know how.

Several years ago, for the first time in my life, I was finally beginning to get comfortable with me. Around the same time I met a great group of friends. We'd get together often and watch our kids play, and talk and talk and talk. I felt so blessed. I still feel blessed, because most of these people are still in my life and are totally awesome people.

But after Ethan was born and all of my fears started, I found myself drifting away. First -- the anxiety and stress, watching him with kids his age but not acting quite like kids his age. Then, finally, the diagnosis and my life turned upside down by therapy appointments. For a year, there wasn't much time for friends, not with trips to speech and occupational therapy each week along with four other weekly home visits by early intervention.

Thank God my friends did not abandon me. They have never abandoned me. But for awhile I was in full-on survival mode. That meant keeping to myself and just trying to get through rather than dealing with the stress of coping with Ethan on social occasions. That has changed and improved. Ethan can get by now. He may not be seeking out friendships (yet!), but things are better than they used to be. In the meantime, though, some of my friends moved on and formed close friendships complemented by children who are the same ages and who love playing together. I see them and they talk about things they all do together and sometimes I tread down the very dangerous path that wonders, "Would I be doing more of those same things with them, if Ethan did not have autism?"

Would I feel less alone?
Have I pushed people away?
In my desire to protect myself or to save us from stress, have I missed out on something very valuable?

Most days I am relatively content with who I am. I love knowing different types of people and being involved with lots of different things. But other times I feel as if I have strayed without meaning to. I find myself echoing the words of a Michael W. Smith song I used to love a very long time ago, "A Place in this World":

The wind is moving
But I am standing still
A life of pages
Waiting to be filled

A heart that's hopeful
A head that's full of dreams
But this becoming
Is harder than it seems

Feels like I'm
Looking for a reason
Roaming through the night to find
My place in this world
My place in this world
Not a lot to lean on
I need your light to help me find
My place in this world
My place in this world

If there are millions
Down on their knees
Among the many
Can you still hear me

Hear me asking
Where do I belong?
Is there a vision
That I can call my own?

Feels like I'm
Looking for a reason
Roaming through the night to find
My place in this world
My place in this world
Not a lot to lean on
I need your light to help me find
My place in this world
My place in this world

Sunday, September 4, 2011

The Birthday Party

Yesterday we celebrated my nephews' birthdays together. One is turning two and one is turning three, and the date fell kind of square in the middle. Since my brother and sister-in-law have a newborn as well, I can totally understand them trying to do a two-for-one kind of party deal, particularly when toddlers really just don't care.

It's a funny thing about getting together with my sister-in-law's family. Maybe I should say a familiar thing. You see, like Nate and I, Christina also has a brother with autism. He's a teenager, and I will call him "A." I don't know A. very well, except that he can do college level math, used to greet people by asking what kind of car they drive, and he hates when people sing happy birthday. In fact, at the last birthday party, we all cheered for HIM as well as the guest of honor, because he was able to stay in the room and keep it together during the critical moment.

Yesterday did not go quite so well.

It was one of those muggy, breezy afternoons where you just want to grab hold of summer and not let go. The kids had been in the kiddie pool, racing around outside in the grass, throwing balls around. Everyone was a little dirty and sweaty and came piling into the house at once for the critical moment. Nate and Christina tried to wrangle the boys so we could gather around the Thomas cake. Only A. was not having any of it. Quiet disagreement about not singing soon turned into sobbing. "I hate this place!" he kept yelling. Deals and bargains, promises of YouTube videos and handheld computer games were met with deaf ears. He didn't want to be there but he didn't want to go. A., who is rather big for his age, sprawled out onto the floor in the middle of the dining room. He wouldn't budge.

"When are we doing Happy Birthday?" Ethan asked about 600 times. This was after I reassured him about 43 times that the candles were indeed NOT the sparkler candles from Anna's party and would not sound like fireworks.

"Soon Ethan, soon," I tried to answer soothingly. The birthday boys wrangled out of their parents' arms and ran away to play. Another cousin a bit older than Ethan was watching A. "Is he sad?" she kept asking her dad. My mom was on the other side of the room, talking to Anna, using the moment to quietly educate while four guys attempted to get A's arms and legs and hoist him out of the room. Someone helped me move the cake to avert disaster. And still A.'s parents tried to delicately cajole him to get past the moment.

As I sat there trying to wrap my head around why singing happy birthday would result in what I was seeing, I could only hear that old adage running through my head: There is no one autism. Here I was, with a son on the spectrum, with a brother on a different part of the spectrum, watching this boy who seemed to be somewhere in-between, at least at that moment, and I was stunned to realize that for all my first-hand experience, I still didn't get it. I didn't get this autism.

That being said, another part of me very much did get this. I got the frustration at a family occasion being disrupted and the stress of trying to avoid a meltdown. I got, I felt and my heart ached at, the embarrassment and stress and that feeling I know they had of just wanting to get past this and stop the stares and just have a regular get-together without these kinds of things happening.

With autism, even when the behaviors are different, there are so many common themes.

The longer I sat there, the more I felt my heart would burst. And while I felt sad for every moment of stress and confusion and A.'s real and actual terror and fear, there was a part of me that felt -- it feels weird to write it -- blessed. I was grateful that if they had to go through this, it was happening in front of us, people who really and truly understood. I was grateful I had had the experience that led to the understanding.

Yes, certain things growing up (and at times with Ethan) have been horrible and humiliating and depressing and draining. I don't wish for them. But sitting there I was again reminded that sometimes things happen not just to us, and not just for us, but for someone else as well. I have a compassion I never would have had. I can help someone else bear a moment so similar to other moments I've lived. Their knowledge of my experience reminds them they are so definitely not alone.

A. ended up staying for the rest of the party. The deal was, though, that no one would sing Happy Birthday. My nephews were too young to care, and my brother and his wife weren't crabbing at the thought of not having cute video of the critical birthday moment. We've all learned the things we thought were the most important really are not. Our "autisms" may be very different. But the lessons we've taken away from them are not at all.

Friday, September 2, 2011

Signs, Signs, Everywhere There's Signs

Good stuff has been happening at school.

I'm bracing myself for Ethan's week two or three realization that wait, this school thing is not going away for a long time and summer is definitely over but for now, so far so good.

There are good signs from his teachers: "I was standing near Ethan the other day and heard Ethan talking -- talking! -- to another kid," reported his special ed teacher. "I couldn't believe it!" I can, I wanted to answer, but what good would that do?

There are good signs from the classroom: They've put him straight into the integrated room without the first stop in the ABA room, and I'm not going to argue this at all. Let's see how it goes. They told me yesterday he was more chatty and enjoyed knocking down blocks with friends.

There are good signs from the playground: The other day the autism class came out with their paras and what did I see? Ethan tumbling down the slide after a little girl (we'll call her "O") who was there last year, laughing. They were actually kind of chasing each other. This girl is probably the most social of all the kids in the class and last year Ethan wanted little to do with her.

And I can't end this without mentioning the literal signs. Last year Ethan's big thing was calling out any breezeways we spotted on houses during the drive to and from school ("There's the tunnel! There's another tunnel!"). He now wants me to tell him what all the signs say.

All the signs, including ones with just symbols.

I never noticed how many signs there actually are on the two miles to and from school. Soon I'm going to start seeing them in my dreams.

Sometimes I fudge a little. I mean, is he really going to understand what "Merge Ahead" means? The interstate signs are "Highway that way." And the yellow sign on the electric box attached to a utility pole outside our house? The writing is so small I can't even see it. But I tell him, "It says "Do not touch or you will get a shock."

I hope I'm not a bad mamma. Someday he's going to actually learn to read and find out he's been duped.