Sunday, April 29, 2012

Superhero Pre-teaching

In the special education world you hear a lot about "pre-teaching" -- that is, going over material the student has been learning or will learn in the classroom setting on an individual basis to cover the missing pieces that might fall through the cracks. A child bogged down by processing challenges or one who is easily distracted may miss things in class or only get part of the picture. Pre-teaching gives the child a chance to slowly go over the information separately, covers those details that might have been lost, and helps ensure the child truly does "get it."

We've learned something the past six months or so. No one is going to tell me that boys and girls aren't wired differently, that their differences can be attributed to nurture rather than nature. Awhile back we realized that Ethan is really "into" bad guys, good guys, play fighting, and play dying. This is not something anyone ever initiated. This isn't even something he saw on TV, because mostly we watch DVDs of the Wonder Pets and Wubzy variety.

A few months ago Ethan started a six-week play session over at Kidspace. I told Karen not to push him...that I didn't care if he was playing at his level as long as he was enjoying playing. I suppose she listened, but she did also start off introducing some typical play schemes for a kid his age (firefighter, astronaut, police officer) to see what he would do with them. Turns out, he loves it! Ethan doesn't do much pretend play on his own, and he has trouble generating lots of ideas, but give him a play partner and he's golden. And so they've been flying rocket ships and putting out fires and throwing bad guys in jail.

Anyone will tell you a typical four-year-old will most likely be at least a little bit interested in superheroes. It's kind of the natural progression from the fighting/wrestling/bad guys theme. But superheroes are complicated, and I don't mean just for Ethan. Not just superheroes, really: for this mama, any of these boy themes are complicated. I know dolls and ponies, not pirates and dinosaurs and which good guy has which power. Half the time I'm not even sure how to introduce many new play ideas.

We'll be playing pirates, for instance, and I'm thinking, What do pirates DO? Ride on a ship, have swords, drink rum, and steal treasure? How do you carry this out for more than a minute or two? It doesn't help that Ethan often gets a bit confused about his terminology, which is while I'll often hear something like:

"I'm going to get you, you bad pirate ship!"

No Ethan, a pirate ship is a boat. I'm supposed to be a pirate, I've said about 20 times now. He doesn't care. He just wants to fight me.

I pointed to a Spider Man picture recently and asked who he was. Ethan didn't know. Do you think he's a good or a bad guy? I asked. Bad, he answered. He's actually a good guy, I told him. That's Spider Man. Next time we saw a Spider Man logo, I asked him again.

"That's Spider Monster!" he answered enthusiastically.

The other day we were at Target, and Anna was off admiring the Lalaoopsy dolls for the 759th time. Ethan and I traipsed over to the boy section. There were several ads up in one aisle, I think advertising the new "Avengers" movie. I know nothing about the movie, but the guy staring back at me looked superhero-ish.

"Who do you think THAT is?" I asked Ethan, out of curiosity.

"That's Jesus!" he said emphatically. "He's God."

Chagrined, I pushed the cart away and thought about how the whole God/superhero thing fit into all of this. God can do anything, but He's real, even though you can't see Him. Superheroes can do anything, but they're pretend. Well, they're on TV, and they're all over the toy aisles at the store, but they're not real.

"Jesus you're my superhero, my best friend..." Anna likes to sing sometimes in chapel at school.

Oy vey.

Back home yesterday morning, I decided that was it. Dan had been watching some Thunder Cats on YouTube with Ethan (a nostalgia thing for him, and nice "boy time" with the little guy) but it was time to get serious. Thunder Cats was a remake with complicated and more mature themes. We needed to start with the basics. Only Ethan and I were up, so I pulled up YouTube again and asked Ethan to come sit on my lap. I typed in the key words. Up popped the first video.

I have learned that I can't force my son to like something age-appropriate if he's just not into it. But then there are times when we know he has an interest, and it's a matter of putting the pieces together -- and arming him with information that might come in handy with other children. I don't care so much if Ethan thinks Spider Man is Spider Monster. But I'd hate for him to be the butt of jokes because he makes the gaffe on the playground.

"You see this guy? This is Spider Man. He can climb up buildings and shoot webs out of his hands to trap the bad guys." Ethan watched, enthralled. Then we watched Batman. He saved Robin from drowning and they both stopped the bad guys from stealing the diamonds. Robin in his friend, Ethan. Cat Woman is bad. Batman drives a car called a Bat Car (Is that right? What do I know!). I limped along in my explanations like someone just barely familiar with a foreign language.

"Daddy, Batman saved Robin with his rope!" Ethan told Dan when he woke up. "And he almost got burned by the fire, and he got the bad guys."

Lesson one down. I have the feeling we both have a lot of learning to do.

Monday, April 23, 2012

Dream Deferred

What happens to a dream deferred? 
Does it dry up 
like a raisin in the sun?
Or fester like a sore -- 
And then run?
Does it stink like rotten meat? 
Or crust and sugar over -- 
like a syrupy sweet?
Maybe it just sags 
like a heavy load. 
Or does it explode?

--Langston Hughes

This couple used to attend the autism group with me, once a month. They were warm, rumpled, comfy, a bit quirky, approaching their fifties, and had a son about 18 with pretty severe autism.

They had stories. They told about his love of the Beatles and how they had to spend every drive, no matter how long, listening to Beatles music exclusively. They told of his obsession with apples, of locking up the pantry and the time he devoured an entire bag. They told of his affinity for escaping, back when he was younger, and their mortification at the bars they had to have on his windows for awhile, for his safety. 

With their stories flowed humor, and grace. You have to laugh, they would say, again and again. You have to laugh sometimes.

"How can you be the way you are, with everything you've gone through?" someone once asked. It might have even been me, I don't remember. 

"Time," the wife, the mother answered. "This isn't something that happens at once. Acceptance takes time."

I think one of the most difficult things about having a child with autism or other special needs, aside from the struggles the child must personally deal with, is the pain that comes with realizing you may have to put aside certain dreams for your child. Often, it's dreams you may not have mediated on every day, but just assumed. One blogger a few years ago deftly described the process this way:

My sons are 3 and 4 1/2 and at this stage of parenting I should still be able to, as my friends can, languish in that "My Boy's Gonna Be the President" dream where the possibilities of what they will become are wide open. The natural progression of parenting seems to be that as your child grows, and as the two of you get to know the person that they are (and are becoming), that field of possibilities narrows. It happens gradually as you as a parent mature gradually, (hopefully) becoming more trusting of your child's decisions and less needy of having your child be The President. Then, eventually, your child is 16 and you don't so much need him to be The President as much as you need him to remember to clean his room and bring home the car in one piece. 

When you find out that your son has autism, you have to do 20 or so years of maturing in one day. You have to let go of all the expectations that you have for him, and for what you thought the rest of your life would be like. There is no "growing out of" the adolescent fantasies that you have carried around for years, the rose colored glasses are just ripped right off, and it is painful. 

It is painful, but not necessarily a bad thing.

There is nothing wrong with having hopes for our children. There is nothing wrong with dreaming big. Why wouldn't any parent?

But our dreams say a lot about us, and our response when they are taken away says even more. They speak to our illusion of control, our priorities, our values and our concept of what makes a life on this earth worthwhile. Broken dreams can bring out a strength we didn't know we had, and the much-needed ability to let go of things that were never ours to begin with. Dreams deferred can birth a quiet joy and contentment, an undercurrent that flows below the surface of our lives, not dependent on the world and our circumstances.

I am not saying this is easy. I am not saying we don't need time and room to grieve. I am not saying there isn't a person out there who is maybe caring for a profoundly disabled person and thinking, "Be at peace with this? Be okay with this?" Like the poem, we sag with the weight. We grow sour. Maybe we even explode.

But what if...what if a dream deferred could maybe become a dream reborn, in a different way -- a dream broken but put back together into something entirely unexpected, but still beautiful in a way we have to maybe squint to see at first?

My friend and I were talking recently. Her son has autism as well. She spoke with the voice of someone who has traveled the path a bit longer than I have. She spoke with peace. She spoke with hope. Maybe her son would never live away from home, she told me. Maybe he would never go to college. But she and her husband had a thought. They had always loved carnivals and amusement parks. She could see them, at some point later on. She could see herself and her husband and son working at small-town fairs, running their own booth, their own stand. She could see her son helping in any way that he could, happy. She could see them traveling and seeing people and places.

And you know, as we walked through the woods and talked, I could see it. I could see the Ferris wheel at sunset and smell fried dough and hear the screams from the rides. I saw it all splayed out in front of me for a whisp of a moment, the French fries and laughter and the glow of lights on the midway at dusk.

I could see it: a dream restructured.

Who knows how it will all play out. Who knows if someday they will travel and live the life of "kind of carnies," among the popcorn and cotton candy.

Who knows? Really none of us know, when it comes to any of our children's lives, when it comes to our own futures. But it's okay to dream. It's okay to hurt. And then it's okay to dream again, however uncoventional or unexpected or unintended those new dreams may end up being.  

Friday, April 20, 2012

What an '80s Song Reminded Me About Autism

The day was warm and dusty, due to the kids kicking up dirt in my brother and his wife's new backyard. My kids, their cousins, and their cousin's cousins all were playing while the rest of us sat in the shade eating dogs and burgers and talking.

I should rephrase -- most of the kids were playing. One was sleeping. The youngest was eating dirt. And Ethan was on the outskirts.

There are days when Ethan joins in the play, and there are days when for whatever reason he's just not interested. When I'm being the super-understanding mom that I should be, this is okay. But some days, when I look out and see five kids ages 2 to 7 interacting, laughing, chasing, digging, swinging...I can't help but feel a little sad.

I know, I know, I know, that I am feeling sad more for me than for him. It's not as if Ethan is at a stage yet where he wants to play with kids and interact but does it wrong and then feels crushed and lonely. He has never told me, "I have no friends." He's not quite sure what having a friend even means yet. He was perfectly content tracing the paths of the hose; sifting through dirt; swinging solo. There would be brief moments when he'd follow the other kids, or roar like a monster in the play house to scare them. But overall he just wanted to be by himself.

I watched my sister-in-law's brother, who also has autism. He spent his time indoors shuffling through old VCR tapes, typing on the computer, and begging to play with someone's cell phone. Every interaction had to do with things rather than the person. I kept telling myself that I had to remember, I had to remember, that people with autism have brains that work differently. And I had to remember that I was sad because I was perceiving the situation through my own lens, through my own feelings and expectations.

But still my "neuro-typical" mind could only think that an essential part of the human experience is relationship with people. And even if they didn't mind, it bothered me to think that the people I know are missing out on something vitally important.

In the car, I was glum and the kids were covered with dirt and again, both completely happy. We turned on XM radio to the 80s station. A countdown of top songs from the spring of 1989 was on. I turned it up. That spring I was 14 and in 9th grade. I was sure I'd know all of the songs.

The first song came on. Apparently, God has a sense of humor. It was the same song, the same obscure song I hadn't thought about in 20 years until the last time I'd thought of it, about a year before. It's called "Room to Move," and the refrain goes something like:

Room to move
That's all I need
That's all I ask for
Room to breathe

The last time I'd thought of "Room to Move," it had hit me that often God could be the one singing those words, to each of us. How many times does He want to do something, to breathe into each one of us, but we shut him out, lock him in a box, choke up the possibilities with our unbelief?

This time, though, I listened more closely to the lyrics.

I know it seems like I'm a million miles away
Sometimes you feel like you don't even know me
But in this world there's pressures building every day
I need time to work things out oh baby
It's not that I don't love you, oh no
It's just that I've got to have
Room to move
That's all I need, that's all I ask for
Room to breathe

And another verse says:

You lose your mind, if you don't take time
Cross that line and your mind explodes
Push too hard and your feelings starve
Emotions overload

Room to move
That's all I need
That's all I ask for
Room to breathe...

I could see it so clearly. I knew it, but I needed this shallow little bubble gum song from years ago to remind me yet again.

It's not that people with autism don't care. Sometimes they care too much. Or they care about different things. Sometimes they feel so many things at once they don't know what to do with all of those feelings. That's why they flap their hands. That's why they greet people by asking their address or the make of their car. That's why they need room to walk along the edge of the yard when everyone else is in the middle.

We have to give them that space sometimes. We can't force them into relationships. It's not fair and it's not respecting who they are.

It's one thing for your child to be heartbroken and not know how to play with others. Sometimes they are missing out and know they are missing out.

It's different for your child to be enjoying the day, being himself, and to run smack dab against the pressure of someone else's expectations.

God, I need to be able to see the difference. And sometimes I need a reminder, like the one from a long-forgotten 80s group called Animotion, featured here, for your listening enjoyment:

Friday, April 13, 2012

Ladies and Gentlemen, Meet Bell and Pointer

Some kids have their blankies. Others sleep with toy trains. Anna has had her "lamby" since she was a baby. Ethan, my friends, has Bell and Pointer.

What are Bell and Pointer, you may ask? Bell is an orange bell that came as part of a set Ethan got for Christmas from his grandparents. Each bell is a different color and has a wooden handle. Several of them have unfortunately broken, but Ethan is partial to the orange one anyway, for whatever reason. Bell is the last tangible remnant of Ethan's bell phase, which has waned and gone the way of cul-de-sacs and dead ends (clocks and timers are really his thing now, but that's a story for another day).

Pointer is a bristle block, but really not. One day I found Ethan standing on a chair in the kitchen with the bristle block in hand, counting out dates on the calendar. He was pretending to be "calendar helper" the way they do in his preschool class. "That's my pointer!" he announced, apparently referring to the pointer the teacher uses at school to count out the dates.

I'm not sure how Bell and Pointer became a pair, but several weeks ago I noticed Ethan carrying them around the house, one in one hand and one in the other. Then he started bringing them with him to the car the way Anna brings her Lalaloopsy dolls. This started to make me a little apprehensive (I figured school would be next, with tantrums if he couldn't bring them in) so we laid down the law: Bell and Pointer were for home and the car, and maybe the grandparents' houses. Not school. Not stores. Not restaurants. And Ethan has complied, thankfully. We have had several incidents at the breakfast table (just this morning, for example, I told them he couldn't eat with them, and got one thrown towards me, resulting in a time out). But this is usually the exception to the rule.

The neighbors probably are wondering why they hear a sound not unlike a cowbell tinkling every once in awhile throughout the day. That's Ethan jangling his bell as we walk to and from the car. They now have a special place to sleep on his rug beside his bed. He tells them goodnight. So do I. He says (copying Anna again with the Lalaloopsies) that they come from "Bell and Pointer Land." They accompany him to the bathroom, resting patiently on the sink counter while he does what he needs to do.

"My precious bell and my precious pointer," Ethan will say endearingly sometimes. I'm not sure where he got "precious" from, but I'm pretty sure it had something to do with Dan and I talking about the Lord of the Rings movies (we can't get enough of them and were re-watching them again last month). Now every time Ethan says this I can only think of the creature Gollum, clutching the ring with those mad, wild eyes and sneering, "My preeeeciousssss."

Bell and Pointer. I don't quite get it, but then again, I don't quite get why I'll find myself walking around for an hour with a Kleenex balled up in my hand. Or that I like to count steps while I'm walking. Or that I sing tunes to the swish of the windshield wipers. Anna's first pretend friends were Sarah and Fishy. They were her hands. She retained another batch of pretend friends (Tulip, Janey and Naney) until she was in first grade. Ethan has the bristle block and the bell, clutched in each hand, making him smile.

Thursday, April 12, 2012

The Blue Notebook

Ever since his first day of preschool, Ethan has had a blue binder that travels back and forth from school. I guess you could call it a "communication book" -- the place where the teacher jots down notes about how his day was, and where his speech therapist, OT and PT make notes about their sessions.

I love the binder. Sometimes I wish his teachers would fill it out more often, but I appreciate having the back and forth and knowing what's going on in school. While Ethan can thankfully communicate bits and pieces about his day, obviously as with any child we don't get the whole picture. The communication book is meant to help with that.

I see the binders all around school. Usually the paraprofessionals are carrying them around as they accompany the kids (with special needs) to wherever they are going. Many of the binders have the PECS pictures on the front to give kids a constant visual reminder of what comes next. Ethan has graduated beyond that, but he knows that while he doesn't really look at the binder, it's important. He gets a little worried if he leaves it at school.

I'm not exactly sure what qualifies a child to have a blue notebook. I don't know if it's any kid receiving special education or any child who has an IEP, or what the deal is. I'd never really thought about it.

This morning at breakfast, out of nowhere, Ethan spoke. "Some kids have a blue notebook. And some kids don't."

"You're right," I said absentmindedly, stirring my coffee. Then I stopped.

"I have a blue notebook," Ethan was saying, "but not all of the kids do."

I looked at him. I waited for the why, but it never came. Ethan went back to eating his oatmeal.

And just like that, for the first time, Ethan noticed. Ethan noticed that he wasn't exactly like all of the kids in his classroom. He wasn't upset, he wasn't questioning, he was simply matter-of-fact. But he noticed.

There are a lot of questions out there from parents of special needs kids...questions about how to respond when children start asking about why they are different. I hadn't paid that much attention, because we weren't even close to being there.

My brother Andy is 30 and has never gotten there.

As Ethan sat and pondered blue notebooks I wondered how I would answer the questions: "What's autism?" "Why do I have it?" A part of me understood a little better the man who had written about his son who is profoundly disabled, the one who told people not to pity him, that he felt more sorry for the children who were just a little bit different, who were aware enough to know they weren't like everyone else.

But maybe, just maybe, I wondered. Maybe we could do our best to take that same nonchalant approach Ethan had at the breakfast table, in all his innocence. He noticed the difference without attributing anything to that. Some people have notebooks, some don't. Some people have autism and some people have trouble seeing and need glasses. Some people lose their tempers and some people are sensitive to loud noises.

And what if I was a little more like that...a little more accepting of the wrongs in this world without asking the whys? What if I noticed and compared all of the questioning, all of the resentment? (Why has this family endured so much while this other family has rarely struggled? Why is that person who is so evil still getting away with what they're doing while this person doing so much good is dying?).

Why is it that the more mature and aware and developed we become, the more entitled we feel to ask "But why?"

If I can learn, I can teach. And one day, Ethan will ask why he sees his therapists and others do not (he has already started to notice this as well). And he will ask why he has autism. And I will, God willing, be able to answer that I don't know and tell him it's okay to not have all the answers. And that he's different, not less. And that he is dearly loved.

Monday, April 9, 2012

The Ponies' Last Hurrah

Our local library has a fun little program in which kids get to show off their "collections" (i.e. rocks, Legos, dolls) in a display case in the children's area for one month. A few of Anna's friends have displayed beloved items and Anna decided she wanted to, too.

The funny thing about the collection is that if kids are really "into" the particular item, they're going to have trouble parting with it. Either that or they're going to choose to display something they once collected, but that is no longer so near and dear to their hearts. This was the case with Anna. She chose her My Little Ponies, who have been collecting dust in a plastic bin under her bed like the cowgirl doll in the second Toy Story movie (that scene makes me cry every.single.time).

We arrived at the library one evening last week and began loading up the shelves. As we worked, I found myself stepping back just briefly in time. I saw the first pony Anna had ever received, the big pink one, when she was just two and couldn't have cared less. There was Minty and Pinky Pie, best friend ponies from all the videos, and the plethora of ponies she'd received at her fourth birthday party. There was Rainbow Dash and Chocolate Chipper and Star Song and Pretty Parasol (yes, at one point I knew all of their names, and she must have around 50. There were the tiny ponies (we called them "the Littles") and the ponies she'd gotten in a huge bag for $5 at the consignment sale and the newer ones from the revamped Pony series that she didn't like nearly as much. I saw us playing on the rug, when Anna was Ethan's age. I saw us doing their hair and building the pony "hospital" and wrapping kleenex bandages around their wounds. I remembered the days she'd take them all outside on the swing set or bring them on vacation (we lost Minty behind her carseat for what had to be at least six months), or choose the "special ponies" who could come to bed with her.

Then I felt the lump in my throat getting tight. My little girl is no longer quite so little, and will only keep getting bigger. What hurts sometimes as a parent is that you know the days are precious and that you should savor each one, but sometimes it's just so hard and days are long and the kids drive you crazy that you lose sight of that...until the kids are sleeping peacefully and you look at the long lashes on their cheeks and remember how beautiful they are and then feel so guilty for not stopping to enjoy the moment, for not remembering how precious each moment is.

In the library, we had gained a small following. Several other children ranging from toddlerhood to Anna's age were ooohing and ahhing over the vast assortment of ponies. "I wish I had some of these," one girl said wistfully. Anna took two ponies she didn't like (they weren't "official" My Little Ponies) and offered them to the girls. The gratefulness in their eyes and voices took me back. For a moment I was shaken out of my melancholy as I realized, while we had had a lot of fun with them, I couldn't help but feel Anna had been...indulged. I'd never seen myself as one of "those" parents. You know, the ones who showered their children with so much more than they needed? But now I stopped and began to wonder. I thought about how much our kids really need. I wondered how much my focus on acquiring toys for Ethan to discover and possibly learn to play with had led to an overabundance of toys in general in our home.

I looked over at Anna, with her curls and green eyes and bright smile. Outside night was falling. The lights in the church next door to the library had illuminated the stain glass windows. Spring was everywhere. This was now.

We stood the rest of the ponies up on the shelves. Reflecting and pondering and assessing my job as a parent are all necessary things. There would always be areas where we'd need readjust. There would surely be times that are sweeter than others and stages that just plain suck. But tonight we were giggling. Tonight my little girl was still a girl.

A horde of ponies in assorted hues and of all shapes and sizes, most with hair gnarled and frizzled, showing the signs of wear and love not unlike the Velveteen Rabbit, watched us go.

Sunday, April 1, 2012

The Easter Story, 101

Palm Sunday. After church we picked up Ethan in the 2-4-year-old nursery as we do every week and I took a look at his lesson sheet. There was Ethan's usual perfunctory, one-color scribble on the picture. Today's paper pictured Jesus on the cross.

Ethan saw me glancing at the paper. "Jesus died on the cross," he announced as we were heading up the stairs to get our coats from the coat room. "Yes," I said, figuring he was just repeating what he'd heard. Bible comprehension isn't the easiest thing for our little guy, and who can blame him? He is just now starting to show some interest or basic understanding in the stories. Jonah has been the first one to fascinate him because, c'mon, what kid isn't blown away by the idea of being swallowed by a whale?

"Jesus DIED on the cross," Ethan said again, as we were grabbing our coats. "He died for REAL."

I thought about Ethan's current concept of death: mainly, as something that happens in video games or when we're playing around, and we always say, "just pretend."

"Yes, it was for real. It really happened," I answered as we struggled into our jackets.

"Why are the people crying?" he asked, staring at the three cartoonish figures standing near the cross with tears on their cheeks.

"They're sad because they didn't want Jesus to die," I told him.

"Did he die on the ground like this?" Ethan sprawled out flat on his back, as people stepped over him to get their jackets. Of course. That's always the way we play people "dying."

"No hon, remember? He died on the cross." We were walking down the church steps now.

"Did they do it with swords?" To Ethan, every death occurs by sword or gun.

"No, not swords." To Dan I whispered, this is so funny and so sad at the same time. "It was nails. They put nails in his hands and feet." I thought as I have so many times of how violent the Bible actually is. There's something about that I like -- how painfully, brutally honest it can be in many places. The question of course is how much to smooth that harshness over, for little ones.

"I don't want people to die on a cross," Ethan said worriedly, almost obstinately.

"They don't now, hon. That happened then. But you know what? He came back to life."

Ethan looked at me, not quite comprehending.

"He came back to life again. He died for real, but he came back to life again. You'll talk about that next week at church, on Easter."

"He came back to life. He died for real. Jesus died on the cross..." Ethan continued to clutch his half-crinkled Sunday school paper in his hand, until we climbed into the car and drove away.