What We Need

     C has always been interested in money. He loves coins, bills and anything having to do with them, which is why he became interested in Presidents. He wanted to know who the guys were on the money, so we bought him a President card deck. He learned their names, where they were born, which number President they were, what their nickname was, and he knew their faces. This happened within the span of a week when he was 4. He was utterly addicted, and even though he can’t recite that list with complete accuracy any longer, he is still quite interested in the old guys.

     Several years ago, when Hillary Clinton started making noise about running for President, along with John McCain, C decided they should run together on the same ticket. That dream for him has died (although I suppose anything could happen at this point), but the other day, he walked with Husband to get the mail. Barack Obama’s picture was on the cover of some news magazine, and C asked who he was. He came running back to tell me that “Barack Mogana is going to be the next President!”

    The child has spoken. Print up the new card, please.  

     C is very simple. It’s quite complicated really, but in essence, he is very simple. Everyone is a potential friend, and he rarely holds anything against anyone. Just this morning, he said hi to a little girl in his class (the one who used to call here all the time but doesn’t anymore, see here) as we walked onto the playground. He says hi to her every day. She never says anything back, but instead runs away giggling with her friends. I realized he has been caught up in something he doesn’t yet understand.

     This little girl’s actions really bother me. It seems to me to be too young to have this silly kind of interaction. Momma Bear that I am, I went to talk to her in line and asked her how she’s doing, and did she hear C saying hi to her this morning? I knew she’d be blunt in her response, and she said something about not wanting to be C’s girlfriend all the time. My response about just being friends with everyone, boy or girl, I’m pretty sure fell on deaf ears. Or perhaps just 7 year old girl ears.

     As I marveled at the sophisticated, albeit annoying, antics of children these days, I started to feel old. Really old. I am pretty sure I was oblivious to all of that until much later. Perhaps it is my memories that are oblivious, but I don’t remember talking about “cooties” until far later than these years. Just like C doesn’t seem to see skin color or weight differences or anything else (he thinks I look like his new gym teacher, who is about 8 inches shorter and has a completely different color hair, but it’s LONG, so there’s his connection), he certainly knows nothing about the complicated world that is boy-girl relationships.

     We talked as we walked in about how good friends treat each other, and he said that perhaps this little girl is shy. I smiled, because she is anything but shy, but loved that C was trying to figure out a reason without holding it against her in any way. I’m not sure what will happen down the road, but for the moment he seemed happy to let it all go.

     As I walked away from the school, I was reminded of kindergarten last year, in a very different school, in a very different town, where all the girls had to be reminded to put their cell phones away before class started. They talked about their Christmas vacations in Paris and I felt the sharp contrast between their worldliness and C’s, and wondered if he would ever find his place among these children. I guess kids just grow up faster these days.

     C’s innocence is part of his charm, and once again I counted my lucky stars to have this child, this boy as my own.

     “Mommy, what does `under sunny skies’ mean?” C asked this morning as he was watching the weather channel, his favorite. Knowing his adherence to the literal, I responded that we are under the sky and the sky is sunny; therefore, we are under a sunny sky today. I’m not sure he really understood, and I consider that my malfunction as opposed to his.

     I’ve struggled to answer these types of questions for years. For a child whose educational goals continually target his inability to effectively answer “wh” questions, he sure asks a lot of them. Starting with “What is justice?” when he was 4 and reading the words on coins, I have answered these questions to the best of my ability, yet I somehow can’t help but think C is vaguely dissatisfied with my answers. Even worse, when I answer, “They just did it that way” (my version of many mothers’ “Because I said so”), I feel like I’m failing him. I’m really not sure why the back windshield wipers on the subaru outback impreza go one way while the ones on a volvo cross country go the other. I could call and find out, probably, but I’d spend two lifetimes searching for the answers to his constant questions about things that seem to have no particularly obvious answer. 

     I feel tremendous responsibility to answer these questions for him, probably much like other parents feel having the loaded, dreaded sex discussion with their children.  Yet I’m pretty sure when that conversation comes along, it will seem completely anti-climatic (no pun intended) after all this.

Mommy, can I have strawberries? Because they will help my heart and memory.

My face can’t get happy.

Did you know that purple people eaters really eat people? But they aren’t made anymore, sort of like the dinosaurs.

We didn’t have rocket math today. I was sad of that.

I’m so glad you got me that new yellow shirt, Momma, because I didn’t have a yellow in my closet rainbow.

B was sad today. I helped him get happy again. Because that’s my job as a kid.

(From his writing journal) Today is April first. Today is pe day. I love pe. I hope it will be fun. (That would be “P.E.,” not “pee.”)

I am going to put the cards in numbercal odor.

Mommy, have you ever had a bad day? Because today was a good day. I don’t think I’ve had a bad day in a long, long time.

     It is amazing how your circle of friends change when you have kids. You find yourself bonding with people you might never have known if it weren’t for your kids’ connection to them. Having a child who is “special” has brought me all kinds of friends I might have never met otherwise. Friends who have become integral parts of our lives simply because of our shared experiences, even if they aren’t the same experiences. These are the kinds of friends you don’t have to explain anything to if your child has a 2 hour temper tantrum at their house or can’t eat anything in their kitchen because he’s allergic to everything. These are the best kinds of friends, even if the only thing you have in common is your kids.

     For a long time I completely surrounded myself with these friends in a protective cocoon. I couldn’t be around people whose kids were developing “typically” because their lives were so different than ours, and it hurt. We were so worried about our child and had no idea what was happening with him. It seemed like the whole world of parents I used to know took everything their child did for granted while we were teaching C how to swallow food. Not true, I know, but it felt that way.

     Even though I have made it back to the world where one has friends simply for friendship’s sake, those somehow connected to the world of special needs remain the best. There’s just something about being around people who have an understanding of what is happening in your family that is both empowering and relaxing at the same time. Autism can at times make for strange bedfellows, but I’m thankful it has brought us some dear friends.

     Wake up. Wait for C to wake up before showering because he will scream that he needs a bottom wipe (still working on that….) while right in the middle of shampooing and will have to dash across the house, dripping soap bubbles all along the tile…dog will lick those up but will probably throw them up later, and usually on the carpet which is harder to clean up than the soap bubbles on the tile. Listen to C get up (via baby monitor), turn off his white noise machine and get pull-ups off, undies on. Remind self to do some research on how to night potty train but also remind self there are bigger battles to fight at the moment. Listen to him go into his bathroom and run to his room to attempt to figure out how, when he pees, it gets all over the floor, the back bottom of the toilet, and the wall. Miss out on that one. Must remain one of the great mysteries of the universe.

     Take shower, interrupted by C standing outside shower door, talking, but not talking loud enough so I can hear, and after repeated attempts at understanding what he’s saying, watch him follow dog out into the hall and wonder what he’s going to do to said dog, and hope husband is paying enough attention to save dog should necessity arise.

     Plod into kitchen, ask husband if he gave C reflux medicine (99 times out of 100 the answer is yes, but must ask in case today is that ONE day), start fixing breakfast. Listen to repeated requests for “dip” (favorite breakfast of dipping something, usually gluten free pretzels, into natural peanut butter and organic whole fruit jelly without any apples because C is allergic to apples), and decide to make his day start great and give dip. Listen to newly acquired request to “spread” peanut butter out on the plate “like Daddy does,” and wonder if this is the start of some new sensory based problem rearing its ugly head.

     Start making lunch, which includes tearing up gluten free deli meat chicken (must be chicken because C is allergic to turkey) into perfectly sized small pieces, knowing if it’s not perfect, I will hear about it the whole way home from school and will be reminded of the one day I didn’t do it perfectly for the remainder of the school year. Put assorted other odd finger foods he will eat at school  (which is a shorter list than the foods he will eat at home) into lunch and wonder, if anyone at school wonders why I send the same thing for his lunch every day, and resolve to increase attempts to work on feeding issues in the hopes he will learn an “apple is the same thing at home, school, grandma’s house, the park,” BUT OOPS, he can’t have apples, work on another analogy.

     Finish packing lunch and set out clothes and revel in the fact that after years of work, C is finally able to unbutton own pajamas and can mostly dress himself as long as things are laid out in right direction and he doesn’t have to button, tie, zip, or snap anything. Make mental note to ask school team to work with him on those things in the hopes that someday, between the team at home and the team at school, he will be able to wear something besides elastic-waisted pants. Wonder when elastic pants become sans-a-belt pants and do kids make fun???

     Get water bottle filled and be glad it only took two weeks to figure out the bubbles that come home at the end of the day are NOT in fact from some leftover soap contaminating his water bottle, but rather because he messes with the straw in the bottle, blows water back INTO bottle, making, in effect, spit bubbles. Listen to C remind me again that there’s soap in his bottle (BLAST self for ever suggesting that within his ear shot!), and remind HIM again that the bubbles are from his spitting back into it and please don’t do that.

     Pack up backpack - have him pack himself reminding him of the backpacking rules that come so naturally to most people. Wonder if I ever had to LEARN how to pack a backpack or did I just figure it out inherently??? Teach him (again) to put homework folder in first, followed by lunchbox, sweatshirt and water bottle on the side. 

    Run out door and get into car. Buckle into 5-point carseat and wonder when  C will get enough muscle tone combined with weight where it’s safe to put him in booster seat. Wonder when more kids than just the one boy - who says something EVERY time he’s in our car - will notice that C is still in a “baby” seat. Sing stupid songs, pretend to race, do whatever it takes to get to school happily and distract from inherent distress at going anywhere Mommy is not. Join in lively rendition of favorite song, “She’s a Brick House,” (complete with “womp-bomp-a-loo-wow” sound effects) and renew concerns about the implications of a 7 year old knowing that song. Start singing “She’s a Maniac” (coupled with pretend fast driving) and doctor up the words to talk about Mommy driving like a maniac and wonder when THAT will come back to haunt me and in what way. Ask what special he has today and if he thinks they’ll have rocket math and keep up constant chatter entire way to school while looking in the rear-view mirror watching for tears or signs of distress.

     Get to school, park (because we don’t do the “push-out” lane), and walk onto playground, generally timing it right before bell rings so there won’t be too much time to run around and generate reflux issues before school even starts. Watch C run around for 2 minutes and not connect with anyone and fight urge to snatch him up and run back to car and keep him at home, sheltering him from sure pain of growing up. Watch him keep one anal ear out for horn so he can not only get in line, but cover ears because horn is too loud and resolve to ask if they could substitute something that doesn’t cause all the spectrum kids to go into sensory orbit before they’re even in the building. Know he is so worried about when the horn will blow that even if he had more time, he wouldn’t venture more than 10 feet away from his class gathering spot and feel sad that he’s so worried at an early age. Wish I could worry for him, and realize, oh wait, I already do that, but wish he didn’t do that.

     Wait for bell to ring, receive more kisses and hugs, be thankful that some days he walks off to get in line without even a backward look at me. Be happy that days of crying and begging to go home are mostly over. Wait for class to line up and go inside, standing, waving goodbye, before walking out with handful of other parents who still walk their kids inside the playground. Wonder, as we walk past the teacher/aide who is waiting for us to leave so she can lock the gate, if she thinks we’re nuts or just diligent parents.

Go home, work, clean, write.

Worry that phone will ring and it will be school.

     As my boy wandered around on the playground this morning, somewhat idly, he had a grin on his face. Anyone looking at him would think he was happy. But I, as a somewhat skilled interpreter of his language, saw a different picture. He watched the boys and some girls playing basketball, probably knowing the game was too fast for him. He said “hi” to a couple of kids in his class, but didn’t connect with anyone in particular. He was grinning in that slightly uncomfortable way one grins when they don’t know what else to do with themselves. He went up and down the slide a few times, enjoying it, but I’m sure knowing it would’ve been far more fun if he could share the experience with someone else. And I just wanted to cry. I still want to cry. I do cry.

     I know some people think I worry too much about this child who appears so happy and well-adjusted. Most of our days at home pass with relative calm; we’ve become so used to the way our family functions that we don’t notice how “different” we are. C doesn’t struggle in an obvious way at school, and to all who see him, he seems like he’s doing really well. He is in fact doing really well, and he likes his school. 

     Yet there’s more to the picture; there were tears last night. Big, fat, alligator tears about a hole in his sock that were probably about more than the hole in his sock. There’s crying every Sunday night about not wanting the weekend to be over, which probably has as much to do with Daddy going back to work as it does with C going back to school. There’s constant distress over why a certain friend, his “best” friend, doesn’t ever invite him over when we’ve had that friend over numerous times. He so desperately wants to have friends, lots of friends. He does have a number of surface friendships, but nothing outside of school would happen if I didn’t initiate it. No one is running home begging to do something with C. He is painfully aware of this fact, and doesn’t understand why.

     I so worry about this sweet, sensitive child who seems to mask his worries and stress. I want his path to be easier, and not because I want to shelter him from learning tough lessons, but because I worry he will be so terribly damaged on his journey. I see tiny, subtle little clues that he is struggling far more than any of us realize, and I wonder what that means for him down the road. 

     I realized this morning, as I did my morning errands and chores after dropping him at school, that I want things to be different for him. I want a cure. But not for him. For the rest of the world.

An entry from C’s writing journal at school….

….Tomoroow we are going to the zoo. Tomoroow is my lucy day. My shaporon is coming. I think I will see a lion…

Translation - “…tomorrow is my lucky day. My chaperone is coming….”

Awwww, shucks. That “shaporon” he’s talking about is me. I have the sweetest boy in the world.

    When something happens, good or bad, C often tells me the story in bits and pieces, sometimes over a period of days. Because his perception of events is often different than other people’s, he sometimes doesn’t tell me what I need to know in order to fully understand the situation and help him process it. I’ve grown better at asking the right questions to get to the bottom of something while still allowing his telling of the story to be in his way.

     The other day at school, a boy in C’s class called him a “loser.” The interesting piece of the story here is that C was running to get a ball at the time, and he got it. He took the word “loser” so literally as to mean he lost the race to get the ball. His point was that he DID get the ball, so he was a “winner.” He was upset, not because the boy meant something far more all-encompassing than C’s understanding of the word, but because the boy was technically wrong. 

     I was so thankful in that moment that he doesn’t comprehend the connotations of the word. I was so grateful that he sees things in black and white so he didn’t understand how awful and powerful a word it can be. For him it’s about the definition, not the nuance. Yet someday he will understand that word, and all its negative undertones. For that, I fear, he is sorely under-prepared (aren’t we all?). I can only hope when I told him that he is in fact a winner, it, like the other positive things we try to say to him whenever possible, settled into his psyche enough to help counteract some of what will surely come down the road.

     When C was finishing preschool, we experienced much angst about where to start him in kindergarten. The well-respected private school with small classes, earthy mothers who grew their own food, and teachers who believed in experiential education? The regular public school, complete with therapy services, a traditional school setting, and other children with special needs? I eagerly visited all the possibilities in our town, hoping the right school for C would reach out and grab me. You’d think we were making a decision between Harvard and Yale, given the weight it seemed to have. Yet we knew having the right environment, the right teacher, and the right feeling would make or break C’s educational experience from the start.

     Our little town was blessed with a myriad of choices, one of which was a Waldorf school. The important aspect of Waldorf education in terms of how it relates to C is that they don’t concentrate on reading until around grade 3. Since C could read already, I thought perhaps this style of learning might be good for him because it would push him to focus on creativity, fine motor skills, and less structure - all things he struggled to grasp.

     As I discussed our options with C’s preschool teacher, she bluntly shot down the idea of Waldorf education for C. “Reading is who he is, what he loves. Why take that away from him?” She was right, of course. In trying to make him more well-rounded, I was, in essence, considering forcing something on him that likely would have been miserable for him. It was my first lesson in the delicate balance between helping him gain skills and letting him be himself. From that point forward, instead of trying to make him something he’s not, I focused more on what he is.