Regrets

“If you could snap your fingers and change her into a normal kid, would you do it?”

This year, it is a boy in the back of the class who is asking. Last year, it was a young woman in the second row, the year before that, a girl in the front row. Every year since Eliza was diagnosed with mild cerebral palsy at 18 months -- her autism spectrum disorder was not diagnosed until she was seven – I have come to talk with the Disabilities Studies class at the local university. Every year, I get asked this very same question.

I know the answer they want to hear.

I usually visit late in the semester after the students have spent months reading about disability; the politics of disability, civil rights and the potential for empowerment that comes from self-identification and finding a community and culture of those with similar life experiences. The silence that follows their question pleads with me. They are young. They want to believe that the world is – or can be – a just place. Like the rest of us, they do not want to believe that life can be capricious, unfair or disappointing.

I like them. I like their earnest idealism. I admire them for signing up for a class called “disability studies” – not exactly sexy. I think they are brave. I wish I could give them the answer that they so want to hear.

I want to smile, tell them that, yes, it has been difficult, but it’s all been worth it. I want to be able to say that I would never change her disabilities because that is who she is. I know this is the right answer, the one that restores a sense of order to life.

But I cannot.

Every year, my answer is the same: “Of course. I am her mother.”

This, after all, is not television with its simplistic message of strength through adversity. This is real life. And my daughter’s life is hard, too hard for such a little kid.

When the pediatric neurologist first diagnosed Eliza, he said, “Look, she is the same child that you had two hours ago, she hasn’t changed. You will take her home and love her just like you always have.” I hated him and his patronizing platitudes. There has never been, will never be, a question of loving my daughter. I love her more than anything else on earth and would do anything for her. But the doctor lied: she was not the same child. Two hours earlier, she had been a child with an easy future.

How can I make the students understand that wanting my child to be “normal” isn’t a rejection of who she is or a failure to love and appreciate all that is unique about her? I feel bad that my answer has disappointed them.

Most years, a student will also ask me if having a disabled child has changed me.

Yes, of course, Eliza has changed me.

But then every child changes his or her parents – it doesn’t matter what that child is like. At this point I will usually talk with the class about our cultural notions of a “core personality:” the idea that we have a stable self that moves through life and the world while experiences bounce off of us, versus the alternative notion that we have no pre-set stable core self, but are, rather a summation of our experiences. This less familiar notion of self means that we are, every day, actively engaged in what ethnomethodologists would call “doing being ourselves.”

For the students, this is a particularly unsatisfying response. My answer is suitably academic, but what they want me to say is that parenting Eliza has made me a better person. They want to hear that I have become more patient, kinder, less judgmental – better.

But it’s not true.

I don’t think that parenting has made me any less kind, less patient or less open to difference. But watching Eliza struggle to fit into the world has made me angrier and more frustrated with the world. Just ask any parents of kids who are different about school and you will open the door to a flood of parental frustration, worry and longing for a school – any school – that would at least try to understand and appreciate their children. I am angry that school will never be a given for my daughter, the way it is for “normal” kids. Facing bigotry hasn’t made me a better person. It has made me sadder.

And I worry more. A lot more. Because my daughter is an only child and my husband and I will die while she is still relatively young. We will make sure that she has a place to live and that we have done all that we can for her before we die, but eventually she will have to be out in the world on her own. And the world is not kind to people who are different.

One year, and only one year, a student asked me, “If you could have known what it was going to be like with Eliza, would you have had her?” This is, of course, a variation on the first question, but a more complicated one. My answer was also more complicated. I didn’t answer with complete honesty. I told the students that I didn’t know how to answer that question because, of course, I didn’t know…and I still don’t really know because Eliza is still changing and growing.

But if I am completely honest, the truth is that some days I have regrets.

If I had known how difficult Eliza’s life and our family’s life was going to be, would I have been more vigilant with the birth control? Some days, the answer is yes. Pregnant at age 38, my doctor required an amniocentesis. If cerebral palsy and autism had shown on it, what would I have done? I don’t know.

Try to understand – I am not saying that I don’t want my child, or that I don’t love and adore her. I think she is amazing and I am always, without exception, her biggest fan and champion.

But some days I just want to have a normal life. An easier life.

I have often heard parents of young children muse that they simply cannot imagine their lives without little Bobby or little Suzie. I wonder what is wrong with these people? Perhaps the sleep deprivation of parenting has dulled their imaginative capacities.

One afternoon last year, I was sitting outside a play therapy meeting with the other mothers of the boys and girls in the group. Eliza was new to the group, so I was just meeting the mothers for the first time. We could hear yelling from inside the room. I commented, “That’s probably Eliza.” Sure enough, a few minutes later, the therapist came out, dragging Eliza, while Eliza desperately tried to bite her. We got kicked out of therapy. Again. Most of the other mothers looked at me with pity or with smug pride that their own child was so much better behaved than mine. Except for one mother, the mother of an autistic little boy in the group. She put her hand on my arm and said, “It’s okay. You are among friends here.” Then she paused, and cautiously said, “You know, there are many days when I imagine what my life and my family would have been like if I hadn’t had Jason.” It was one of the kindest things that anyone has ever said to me.

Maybe all parents secretly imagine their lives without their children sometimes. If they do, I wish they would admit it once in a while.

Then maybe I could better understand my own complicated feelings and better explain them to the next group of students enrolled in the Disabilities Studies class.

Stranger Danger

“You better watch this one, Mom, she’ll walk away with anyone,” warns the nurse as she leads my three-year old daughter down the hall toward the scale. My daughter, tiny for her age, with blue eyes and tight blond ringlets tumbling every which way, never looked back, never checked to see if I was following, never showed the slightest bit of anxiety about walking away with a complete stranger.

“We are working on helping Eliza understand boundaries with strangers,” explains her preschool teacher, one year later. The teacher had pulled me aside at pick-up time to express her concerns about my daughter’s interactions with strangers. Apparently, earlier that day, a man had delivered a new couch to the classroom and before he left, my daughter ran up to him, hugged him and earnestly proclaimed her love. I pointed out that it really was a nice couch, but the teacher was not in the mood for my jokes. She was honestly concerned for my daughter’s safety, so I tried to listen and to murmur respectful, vague assent-like noises.

So, I suppose I should have welcomed the email that came home to all first-grade families two years later letting us know that my daughter’s class would be starting a “stranger danger” curriculum during the last week of the month. But instead of being grateful, I went online, booked flights, and arranged for my daughter to go skiing in California for the week.

I am not callous or cavalier. In fact, most people who know me would describe me as an excessive worrier and I do worry about my daughter’s safety. I can still feel the panicky, sweaty, nausea that crept over me one night last fall when my daughter ran out the front door of the house. It took me a little while to realize that she was gone and by the time I headed out front, I couldn’t find her. At 9:30pm, it was dark. I looked down the block to the busy street that intersects ours. I looked up the block to the park that seemed unusually ominous now that it was dark and deserted. First I called out using my most up-beat, bandwagon, let’s-all-come-out-now voice. Then I tried using what Eliza calls my “Sarah Voice” and demanding that she march home this instant. Then I just started yelling her name. The pitch and volume of my voice must have gone up because my neighbors starting coming out of their houses and joining the search. A mother from across the street ran to get her car keys so she could start driving around the neighborhood. Eventually, we found Eliza, down the block, hiding in some bushes, but not before I had run through every grisly kidnapping/child molestation/car accident scenario available to my imagination.

And yet, I have problems with the simple “don’t talk to strangers” rule that governed my own childhood, and those problems have created a kind of paralysis. I have taught my daughter nothing about stranger danger, even though I understand that I cannot watch her every second, that there will come a time when she is on her own and must negotiate a world of strangers, and that she will, someday, run out of the house again.

As a sociologist, I like strangers. When other people imagine vacationing on a secluded beach with no other people in sight, I imagine wandering the busy streets of Manhattan, Chicago, or San Francisco. Strangers represent excitement and the possibility of new discoveries, portals into other worlds we ourselves do not inhabit. Strangers offer the liberty of anonymity, the freedom to reinvent and redefine ourselves in a way that is impossible around those who know our past. Strangers are fun.

Yet, as a mother, and particularly a mother of a child with an autism spectrum disorder, I have absorbed and internalized our cultural wariness of strangers. While my sociologist mind may be calm and rational, the mother mind constantly interrupts like an overactive Twitter feed with warnings of impending danger.

On a recent visit to Seattle, my daughter insisted on talking to every single pan-handler, street musician and homeless person we passed. With each encounter, the mother voice in my head shouted “Danger! Danger! Danger!” These people are dirty, unpredictable, drunk, stoned and sometimes completely incomprehensible. “Don’t Touch!” But as the mother voice grows more shrill, the sociologist asks rhetorically, “Who is more interesting to talk to: the guy sitting on the sidewalk with a shopping cart full of random stuff all tied up with different bits of colored twine, feeding pigeons out of his hands or the man in a grey business suit, hurrying past while talking on a cell phone?”

My daughter’s autism spectrum disorder means that she does not read subtle social cues and so fails to experience that creepy, hesitancy that most of us feel around a dirty, semi-coherent, erratic street vagrant. In Seattle, Eliza didn’t care that she couldn’t understand half of what Pigeon Man was saying. She didn’t care that he was smelly. She was thrilled that he was feeding the birds. Without any hesitation, she plopped down on the sidewalk next to him and snuggled up against him while the mother voice in my head screamed “Stay back!…personal space!…H1N1!” Pigeon Man gave her a pat. He reached into his pocket and took out a dirty, many times recycled, plastic bag full of rolls, buns and bread and handed Eliza a chunk. Then he gently took her hand and coaxed one of the pigeons onto her palm. My daughter was ecstatic.

After years of stopping to talk with every single street musician we meet – sometimes even going out of our way, crossing the street, or going down an extra block just to pass by the street musician – we are yet to encounter one who has not been kind, gentle and playful with a little girl who is delighted by their music, no matter how bad it might sound to my ears.

Still, the mother voice warns that it only takes one….

Stanger Danger Curriculum Day 1:
Who is a stranger?
A stranger is someone that you and your family do not know. Most strangers will look innocent and act very friendly; they will not always look mean and scary. You can never tell how a stranger will act based on appearance.

“A stranger is someone that you and your family do not know.” I am okay with this. But then it all falls apart. Most strangers aren’t acting friendly and looking innocent; they are friendly and innocent. Is it now considered prudent – safe – to simply to fear everyone we encounter? Research tells us that fear is a bad teacher – rather than eliciting the desired behavioral outcome, fear tends to produce, well, fear. And we are too fearful already. Our cities, our parks and our playgrounds are safer today than they were when I was a child, but we fear them more. We live longer, healthier, more affluent lives and yet we are more worried and less happy.

What should you do if you meet a stranger?
If a stranger approaches you, you should always tell someone. These are good people to tell: your parents or other family members, your teachers, a policeman, a fireman, a paramedic, if you are in a store, tell a store employee.

A year ago this last September, a few weeks before her first grade school year was set to begin, Eliza and I were on campus dropping off some paperwork for the upcoming year. We were outside the school building and happened to run into her kindergarten teacher from the previous year. “Hi Eliza!” exclaimed Lindsay, “How was your summer?” Eliza looked at her, gave a cautious “Hi” and then asked “Who are you?” Because Eliza has a very difficult time recognizing people if they change clothes, hats, hairstyles or contexts, my husband and I have learned to give her quick, quiet little prompts before we go into social situations, but chance encounters are always tricky because there is often no time to prepare her.

How would my daughter differentiate between a stranger and a “policeman, a fireman, a paramedic” or a store employee? Aren’t all these people, by definition, strangers as well? Is there some trick for distinguishing between “good” and “bad” strangers? And how do we deal with the fact that statistics tell us that if we are going to fear someone, we might very well fear our own family members more than strangers.

If a stranger offers you money, candy, or a toy don’t take it. Don’t take anything from a stranger.

Two weeks ago, Eliza’s second grade teachers took my husband aside to explain that there had been some trouble that day at school. Apparently the class had walked to the neighborhood park to play after lunch. A woman in the park was sitting with a bag of candy and offered a piece to Eliza. Eliza’s teachers told her she was not allowed to take the candy. Eliza insisted, arguing that the candy was wrapped (our rule for accepting candy from strangers on Halloween) and the lady was nice (….by definition, since she was handing out candy). A battle of wills ensued. Granted, Eliza should have followed her teachers’ instructions. But the incident that set it off is so cliché -- offering little girls candy in the park — that it is almost ridiculous. And how do I answer Eliza’s obvious question: “What are you so worried about?”

Me: “Well, sometimes people aren’t so nice to kids and your teacher’s job is to keep you safe.”
Her: “But she was nice to kids.”
Me: “Right, but moms and dads get to decide what their kids eat, not strangers in parks.”
Her: “But you let me eat candy.”
Me: “That’s true, but I don’t know about that particular candy. I don’t know if it is safe.”
Her: “Why? What would be unsafe about it?”
Me: “Well, I don’t know, maybe somebody could put something bad in the candy…..”

Seriously? Do I even believe this is a possibility? Some elderly lady in the park buys a package of candies and somehow manages to inject poison into the candies, inside their wrappers, inside the bag, just so that she can go to a small neighborhood park in Portland, Oregon on the off chance that a school will visit the park that day, at that very hour, and she will be able to give a little girl tainted candy? In the history of old ladies and parks has this ever happened?

If a stranger tries to get you to go with him or her anywhere, say no!

And here, the mother voice can get the upper hand. My daughter, like many kids with ASD, will wander away. At age eight, she will walk off with anyone who is kind and invites her, just as she did as a toddler in the doctor’s office. Since I have a television, radio, internet connection and a newspaper subscription, it is difficult not to see this tendency to wander as dangerous. Even though I know it is statistically unlikely, the thought of somebody taking or molesting my daughter is so terrifying that rational thought can seem like too much of a luxury.

Riding in the car, we are talking about making a playdate with a friend. “I have hundreds of friends,” announces Eliza. When my husband and I express our surprise at this accounting, she explains: “Yeah, well, like the people who drive the ice cream trucks: they always say hi to me and they give me ice cream.” On the one hand, “Hi” has started a lot of great friendships, not to mention romances and marriages. My husband and I have spent hundreds, maybe thousands, of dollars on social skills therapists to teach Eliza to say “hi” when she meets people for the first time. On the other hand, if a person can convert from “stranger” to “friend” with a simple “hi” how do I get her to distinguish between people she should walk off with and people she should not?

Because we have been unable to overcome my stranger danger ambivalence, we have had to accept that we need to watch Eliza all the time. But the truth is that I want to be more like my daughter. She takes time to talk to anyone – everyone – she meets. She is genuinely interested in who they are and what they are doing. She accepts strangers exactly as they are.

And I am left still searching for some alternative way of teaching about strangers – a curriculum that balances a mother’s interest in safety with an acknowledgement that living requires some risk and that the next stranger we meet may be the best thing that has ever happened to us.