Lion and Magic Boy

My baby took the bus today to school. By himself.

Oh, I know. Zillions of children take the bus every day to school. Every day. What’s the big deal?

They’re not my baby, that’s what.

Over-protective? Me? Let’s examine the evidence, shall we?

Nathaniel clung to my leg every time I dropped him off through two years of mixed-age Waldorf kindergarten, the gentlest place in the universe for a child outside of his mother’s womb. I used to substitute in the kindergarten classroom from time to time and each time I fervently wished that I could be 4 or 5 again and stay there every day. I finally found out at the end of the second year that once I left Nathaniel became a different child entirely, leading his little entourage everywhere and becoming an insiration for the class instead of sitting glumly alone on the rocking charir in the corner the way I thought he had been.

Serena still clings a little, although she’s in 1st grade now.

I always honored the clinginess, knowing that if the child was supported during the early years, eventually a strength would accumulatee making clinging no longer necessary.

But Eric, he’s so…little. He’s still the size of a small 2-year old, if that. He doesn’t say a lot of words that most people would recognize. He doesn’t walk yet.

He’s my baby.

But I realized that Eric isn’t necessarily like my other children. He long ago let me know in no uncertain terms that he had his own agenda, thank you, and I needed to just stand back and let him at it.

So I’m standing back.

All morning we talked about him getting on the bus, riding the bus. I made it a point for him to watch Nathaniel and Serena get on their bus. He knew he was going to school, and he’s been there before but never on the bus and never alone.

The bus pulled up.

We were ready. Eric’s coat was on, his socks and shoes were on, I had packed him a little basket with his snack, and for an hour after the older children left we sang “Eric’s going to ride the bus. Eric’s going to go to school today. Eric’s going to ride the bus.”

We got on. I strapped him into the car seat they provided and made acquaintance with the bus driver, Gwen. The only other occupant was a little boy in a wheelchair, Kareem. This is not your usual bus.

Eric waved goodbye, then began to look around as if to say, “This is interesting. I wonder what’s going to happen next?”

My little boy. Not so little today.

Having three children at home can be, shall we say, trying at times. One of the biggest challenges of late has been appeasing the Middle Child, who sees her older brother as leading a glamorous life, doing all the things she doesn’t actually want to do but does now because he’s doing them. I know about this, because I was the little sister of an older brother too. It doesn’t help that he’s really really good at a lot of things. Evidently Older Brother has made Mastery of Things a goal for his life, as he juggles, walks on stilts, plays chess and the cello, and draws, all quite well for a boy of 10, and all things Middle Six can’t do (except the drawing).

Middle Six has become very interested in the concept of fairness, as in, “Am I getting everything HE’S getting?” I assure her, over and over, that while life isn’t always “fair”, that is, equal, I love all of them the same.

The youngest usually gets the very shortest end of the stick in so many ways, but when it’s Eric, all bets are off. Eric is not shy about insisting on the things he wants. I thought for awhile after he was born that he would be the Easy Child, which was fine and a bit of relief after Drama Elder Daughter Jess, Intense and Emotional Elder Son Nathaniel, and Double Emotional Younger Daughter Serena, but I have already observed that Eric had other plans.

Despite Eric’s strong opinions, the physical world has been difficult for him. Awarded lax joints and weak muscles by the Down syndrome gods, Eric has found it hard to move. Given an unpredictable digestive system, every bite must count. Tiny at birth, Eric took a long time trying to catch up, and has since given up on that and has instead settled into the body of someone about 2/3 his age.

It’s not that he doesn’t work at things; he does. Over and over. He cheerfully repeats the same syllable over and over, hoping we’ll eventually understand the word he hears so clearly in his mind but that his mouth refuses to enunciate. Once he figured out that we give applause for his activities like standing without holding on to anything, he gleefully practices this over and over, falling with a thump each time onto his diaper-clad bottom. I think to myself, “That’s got to hurt,” but no, there’s Eric, bottom in the air, then slowly straightening up, legs slightly bent and askew, but with a triumphant grin on his face.

Tonight Eric, motivated by the handful of M&Ms Serena was clutching, walked his first steps alone in an attempt to get closer to them. And again later, he walked several steps alone simply in the course of our playing a game, one of many little games routinely made up at the spur of the moment during a typical day.

Eric is 3 years old.

I remember thinking when he was about 18 months, when he could barely sit up and certainly couldn’t crawl, couldn’t even roll over, that he might never walk.

I remember Jessica’s first steps, 22 years ago: she sat and watched us closely for a couple of weeks, then one day got up and did it on her own. She was 13 months old.

I remember Nathaniel’s first steps, 10 years ago: attracted to a large ball that was almost his size, we rolled it just out of his reach, forcing him to take the couple of steps we already knew he could take in order to reach the ball. He was 14 months old.

I remember Serena’s first steps, 6 years ago: Jess decided to take matters into her own hands, literally, and she held Serena’s hands and walked her up and down the living room one day and then simply let go. Serena began to run and didn’t stop running until she was about 4. She was 14 months old.

I know I will remember Eric’s first steps, too. As magical as all the children’s first-step moments were, somehow Eric’s might be just a smidge more meaningful. No, it’s not “fair”, or even equal. But life isn’t always like that.

[tags]down syndrome, first steps, fair[/tags]

WARNING: I may reveal some of my beliefs in how life and the Universe works here. You needn’t agree.

1. “They’re so HAPPY all the time!”

I’m cringing now, because I actually SAID this to the mom of a girl in Nathaniel’s 2nd grade class who had been with him since kindergarten. And this happened AFTER Eric was born, even, but in my defense, it was when he was still in Survival Shutdown Mode, since he was tiny and weak and barely there and I hadn’t yet a clue as to his true personality.

So this mom, having probably answered this 400 times before, simply said, “No, she gets frustrated sometimes” while at the same time looking at me like I had just grown a second head: Don’t you GET IT??

I can answer, in all certainty, that people with Down syndrome are most assuredly NOT happy all the time, Eric being my prime example.

BUT…….I can also say that it is my experience that people with Down syndrome, Eric specifically, seem to make life choices and personality choices that allow them to not dwell on things and to instead see the good in people and in life.

In short, they Get Over It.

A good lesson for everyone to take home, yes?

2. “They’re so friendly!”

Well, yes, sort of. It depends. Some people are friendly, some aren’t as friendly. Some of ALL people. But those with Down syndrome? Again, I’m generalizing here, but in my experience, people with Down syndrome ALSO seem to have made personality choices and to have chosen life goals that make them more likely to be relatively engaging toward other people.

This is most certainly the case with Eric. He hugs more people previously unknown to him in a typical day than I do in six months. And I get the impression that much of his life is going to be about his interaction with others.

3. “They’re not very, uh, smart, are they? Trainable, yes, oh, and YOU’VE done so much with him, I can see, but smart? (in a whisper): they’re not like US, are they? ”

Well. this will likely be a controversial answer.

Eric is tremendously smart. I say this not only because I am his mother, but because, well, he IS. But his sort of smart? It’s true, it IS different. And Eric and other people like him? Well, they ARE rather unto themselves, aren’t they? It’s more, I think, than the extra chromosome, it’s undefinable, yet, at least to me. And the purpose of this difference? I haven’t got that one yet either.

But with all these differences that set these extraordinary people apart, there are also zillions of things that are the same as everyone else:

People with Down syndrome feel pain (can you believe I’ve been asked that one?)

People with Down syndrome have feelings

People with Down syndrome love

People with Down syndrome breathe

People with Down syndrome have an extraordinary gift.

I rather think it’s up to the REST of us to figure out what that is.

Lately there has been a veritable lake in the vicinity of Mickey’s bowl, and I’ve had to do some surveillance……..

Regard: Evidence #1:

Evidence #2:

Owner of above apparatus, aka Mr. Suspicious:

Who says, “Let me show you what those shoes are REALLY for!”

I know what my book is going to be about.

Some time after Eric was born, it came to me rather strongly that there was something having to do with his having Down syndrome that was going to become a book I would write. I’ve always wanted to write, and I’ve even begun a children’s book, but always in the background there was this thing about Down syndrome, but the tricky part was that I didn’t know just what it was. I figured I needed to live with him awhile and it would come to me.

Today it came to me.

Today was the day Eric was “evaluated” by a team of “experts” so as to assess his needs vis a vis what the state and the school district will provide in terms of his various therapies. (You may recall that Eric had one of these evaluations before, in Colorado, last August.) Up to age 3, children like Eric and with a whole range of developmental issues receive therapy in their homes; after age 3 they are considered under the purview of the school district and so typically receive these therapy services in a school setting.

Fine.

But this doesn’t work for everyone.

It was plain to me that these therapists today, while well-meaning, are most comfortable being able to define children through the narrow range of guidelines they are given. Walks at 2 years, otherwise it’s a problem. Communicates through speech and signs by age 3, otherwise it’s a problem. Fits puzzle pieces into the shapes they “go” in, never mind what other game the child might dream up to play with them, otherwise it’s a problem. They’d like to see Forrest Gump braces on his legs, so he’ll walk. They don’t know this boy, otherwise they’d know that he’ll walk when he’s good and ready, and not a second before. The therapist’s parting words about that? “Be sure you get the kind with hinges”. Great, so my kid walks, but with the gait of Frankenstein?

No, thanks.

So, my question is, what’s the hurry? I’ve known a long time that Eric is different, different in many really subtle ways, from other people. For one thing, his DNA is different. Shouldn’t that be a clue? He truly looks at the world through different eyes than I do, or anyone else I know. It’s more than the uniqueness of every human, it’s….different.
Shouldn’t we, then, honor these differences of these wonderful, humorous, giving people, rather than try to fit them into the box everyone else came in? I wish every one of you could see the gifts of a person with Down syndrome; they have…..kaleidescope eyes. They see the world differently and therefore have different priorities. I don’t even know what those priorities are, but I can’t wait to find out. Shouldn’t my child have the freedom to express them? Are we, as the majority, really entitled to mold these people into something they are not, simply because we might be afraid of who they are? Because they had the effrontery to be…..different?

I think not.
So that’s my book. Helping other parents with this process, guiding them in this new world of incredible discrimination so that their children have the opportunity to be who they came here to be.

Dear Eric,

In about a month, you’ll be three. It’s hard to believe some of the changes you’ve made, and I must say, I’m quite impressed.

I had no idea, for instance, that you’d become so fascinated with Mickey’s water bowl. You have floated stacking plastic cups in it, dragged the kitchen towel into it, thrown a ball repeatedly into it, and submerged most of yourself in it. Twice. In one day.

Nor did I dream that you’d become quite so facile so quickly at managing the steps. Your brother and sister have learned to quickly run up and close their bedroom doors when they hear you clomping up the steps, right knee up, both arms pull, next step, right knee up, both arms pull. They know that Eric Is On The Loose and there’s no stopping you from pulling books off their shelves, unearthing contents of wastebaskets, and discovering all sorts of chokable treasures in their rooms if you gain access.

Not to be daunted by this, if you come across a closed door and you know that someone is on the other side, you are not too proud to throw yourself on your belly and peer under the door to see what’s going on. Yesterday this became a game as you slid a wayward cassette tape under the bathroom door repeatedly as I slid it back.

Going down the steps again is no problem, as you simply slide slowly, a semi-controlled fall, on your belly down, and down, and down. Rug burn? No problem.

You have learned to imperiously sign “pancake” repeatedly until you get your wish, two piping-hot leftover pancakes (we make extra specifically for this purpose) delivered to you on your own little plate. When finished, you helpfully slide the plate on to the table from your perch on your high chair, demanding a refill at the same time.

Experiments with standing have led you, so far, to almost stand alone, letting go for a split second for the first time day before yesterday. It surprised and unsettled you that you could do this, but I know it won’t be long.

Another favorite pastime is opening the pantry and removing a one-serving container of applesauce, as well as, inexplicably, a jar of kelp powder, and taking them around the house. The applesauce I get, but why kelp? Are you mineral-deficient?

We realize that that container of 100 small block cubes is lots of fun, mainly for throwing two by two into the foyer, but must you?

Don’t change, Eric, though I know you will. What I mean is, I love that you are you. You frankly don’t care much about imitating others unless it suits your own purposes or amuses you. I love that so many things amuse you, and I haven’t more than a passing clue what the entire list is. I just know that I love being awakened at 6:30 every morning by the sound of you chortling at some private joke in the corner in your crib.

Thanks for waking up every day laughing.

Love,

Mama

News Flash: Eric can open doors. By himself.

scary
fall down go boom
not to mention the appalling lack of privacy

tongue

Today Eric had an “evaluation” by a team of various therapists and other assorted employees of the local school district, to help ascertain what Eric’s needs are and what is offered for him after he turns 3 years old in November and moves into a different category in terms of funding for his various therapies.

Apparently, it’s a whole different world.

We are a fairly private family. The older children attend a Waldorf school, which is consistent with our own family philosophies, some of which include: limited media exposure for young children; the idea that the parent is the child’s first teacher (ooh! That’s a title of a book! You Are Your Child’s First Teacher, by Rahima Baldwin Dancy); a sense of gentleness and protectiveness that surrounds young children, and many other things. In addition, we eat organically-grown foods. We don’t eat processed foods. We wear natural fibers, and the children are clad head-to-toe in woolen underwear from October to April. I knit. So do the children. My older son’s favorite activities are playing his cello and juggling; my daughter’s is drawing, and she’s writing a book. So we’re a little odd.

My older daughter attended public schools, some of them rated very highly. But at the same time, there comes with that the possibility of exposure to other family philosophies (guns as toys! poor grammar! Dora the Explorer!) that may not be consistent with ours.

Not that it would necessarily be a bad thing. The preschool they are recommending for Eric is a mixed group, some having special needs, some being part of a low-income program, and some being not definable as part of any particular group. That’s fine. I’m all for diversity, and I want that for Eric, want “inclusion”, whatever that is in reality.

The thing is, I see now that Eric is in a place of his own, just as he is a boy with a very independent sense of who he is, and his needs may not necessarily be identical to those of his older brother and sister. Makes sense, right?

Before Eric was born I made a complete plan in my mind for him and his life, thinking that this time, this time, I’d do it “right”, and have the perfect birth/childhood/education/life for this child, my fourth, because I’d finally put all the pieces together, no need anymore for experimentation, because THIS time it’d be PERFECT. And then along comes Eric, SURPRISE! I’M NOT WHO YOU THOUGHT I’D BE! and it all went out the window, because Eric seems to have his own ideas about who he is and what he needs. All I really need to do is listen, but sometimes it’s hard to let go of my own expectations, my own definition of who I think he’ll be.

And this evaluation is one more step in this process, one more really defining moment, because from here Eric can go in so many different directions.

Which one, Eric? Which one is you?

special needs
education
family
children
down syndrome