Shame - NEW!

Shame is feeling your forehead burn as you furtively peruse the Special Ed section at the library or bookstore as if you were viewing pornography.

Shame is walking past the child therapist's office with Sasha so that a parent I recognize from school won't see where we're going.

Shame is telling another parent that the reason Sasha sees the school nurse every day is to get allergy medicine.

Shame is not saying Sasha has Asperger's Syndrome.

Shame is saying she has Asperger's Syndrome. That's labeling.

Shame is mentioning Sasha's "issues" to someone then enduring their skepticism or disbelief or, worse: pity, wariness, fear, judgement, then their subtle, silent retreat, like they've discovered we have leprosy.

Shame is not alerting teachers, camp counselors, sitters and the like to Sasha’s issues, then something goes awry and I’m of course in the wrong for not saying anything. Not just in the wrong--dishonest, trying to pull a fast one by not warning others.

Do people really need to be warned about my child?

My Daughter, The Wall

We've been having an issue with our basement wall. Specifically, dampness. Everyone agrees about this, but how much of an issue and what to do about it varies wildly. One contractor says we have to dig a trench along the outside of our building then pour a concrete shelf to channel water away from the house, which would involve getting permission to dig up the neighboring city-owned property, as well as procuring permits and insurance. Another says we need to remove currently existing paint from the interior walls with a grinder then apply a state-of-the-art waterproofing product that bonds with the brick while still allowing it to breathe. Another says we should sandblast the interior brick then slap mold-resistant wallboard over it. Another says plug in a dehumidifier and forget about it. Yet another says only a mold remediation specialist can handle the job. Another contractor, I can't even get to come look.

Each contractor seems less motivated by objective and informed reasoning than by a need to put forth his own agenda--one only sees dollar signs (and us as vulnerable mark), one wants to push a particular product, one doesn't want the hassle of a job that requires special permissions. One wants to scare the living homeowner out of us with warnings about toxic mold while another dismisses environmental concerns out of hand.

It's all sounding so familiar. I remember when Sasha was 2 1/2-3 and her pre-school teachers mentioned her poor play skills, her need for transitional objects, her not making consistent eye contact or talking to the other children. Friends and family responded to such news incredulously: "What are they talking about?! Must be something wrong with the pre-school."

When she was 7 and we were deciding whether to move her from general to special ed, the teachers' responses ranged from "she's got big problems" and "she definitely doesn't belong here" to "there's absolutely nothing wrong with her." The same is true now, as we consider moving her back to general ed. Each respondent has an identifiable agenda, whether it be furthering her own career, following the principals' orders, plain ignorance coupled with a non-progressive teaching style or, in the case of family members, a wish to deny the genetic basis of Sasha's behavior.

Probably it would be different if water were pouring into our basement. The appropriate response would be glaringly apparent and need to be followed immediately: sump pump and trench ASAP. No time to second guess. If Sasha were clearly autistic, or aggressive, or otherwise disruptive, we wouldn't have questioned whether to send her to special ed. It would have happened much sooner. And we wouldn't be trying to get her out of it now. Not that either of those two possibilities are, by any means, preferable. I'm certainly grateful that our basement isn't a flood pool. And do I wish Sasha's problems were more severe, merely for the sake of clarity?! The idea is absurd.

So, in the end--and after endless trawling over the internet and talking to other parents (and homeowners!)--we have to go with our gut. But ssshhh! If walls can talk...I want to hear what ours is saying.

Excuses, Excuses

It’s a good excuse. Always works for a cluck of sympathy. It’s always there, ready to use, built in. I could be complaining about never finishing my writing projects, or not getting the house fixed up, or feeling perennially sleep-deprived. I could be apologizing for not returning a phone call for months, or for being snappish and grumpy. There’s always a ready response: "That’s understandable...considering." No need to say what there is to consider. I have a special needs child. What more excuse do I need?

For soothing the sorrow of broken dreams and assuaging the guilt for unfulfilled social obligations, this one excuse works pretty well. To an extent. Then I’ll meet someone in a much harder situation, who manages to get work done, maintain the house, get enough sleep, is cheerful and socially responsible. My excuse starts to pale. Afterall, everyone has difficulties. It’s amazing that anyone gets anything done in this world considering back pain and backed-up sinuses, panic attacks, over-demanding bosses, dying parents, crippling childhoods. And we won't even go into war, poverty, hunger, which exist on an entirely different plane of excuses. The point is, we all have an excuse. Well, not everyone. There do seem to be those glowing personages who had happy childhoods and lead happy, fulfilling lives, spawning an atmosphere of relaxation and happiness wherever they go. Those people actually provide the rest of us with another excuse. How can we possibly get on with our lives with the undue pressure and moldering resentment of having Mr. or Mrs. Happy around? But I digress.

Let’s get back to my excuse. My perfect excuse. Having a special needs child--children, actually--excuses all my shortcomings and missteps. I’m exempt. As are all parents of special needs kids. Recently, I confided to an old friend that I had never kept up ties with a particular guy because one night, years ago, he had tried (unsuccessfully) to force himself on me. My friend regarded me sternly. "You do know," she paused, "that both of his kids have Downs Syndrome?" What could I say? Obviously, the guy’s excused. Really. Never mind that one thing has absolutely nothing to do with the other, and that his trying to have his way with me was only one item on a long list of offenses, I found myself immediately thinking better of him, and feeling that it was high time I let go of old grudges.

I wonder how far this excuse extends? So you raped, murdered, pillaged? Have a special needs kid! You’re off the hook! All right, so maybe that excuse won’t work for everything. But if you reject the excuse, the flip side is this: he deserves it. Not a judgement I’m willing to pass. Deserve to have special needs kids? That would mean that everyone deserves the hardships that befall them. That life is fair and logical. Or--more absurd--that my own special needs kids, whom I love and cherish and feel lucky to have, are punishment--for my past misbehaviors, no less. Hah! Makes more sense for me to forgive the guy because, well, it’s understandable...considering. Works for me.

My Biggest Fear

Yesterday was a bad day. Right up there on the list of really bad days. I would have run to the freezer and drowned myself in chocolate ice cream if it wasn't so cold out, and we weren't all out of ice cream. More than binge, though, I felt like hiding, pretending it didn't happen. But here's the truth: my son beat up the babysitter.

Mo was tired and hungry, and didn't feel like going to occupational therapy (for ADHD and sensory integration dysfunction), so he took off. The sitter had to run to catch up to him, hold him so he couldn't go out into the street. He went ballistic--kicking, pulling her hair. He bit her--three times, leaving marks. When the sitter, through tears, described the incident, I was horrified. The phrase "chunks of hair" sticks painfully in my mind. Mo did that? My sensitive, thoughtful, caring, generous-spirited Mo? No!

Not that he's an angel. He's amazingly adept at getting his older sister, Sasha's, goat--snatching the book she's reading, ripping up her art work, barging into her room. And some days with him seem a lesson in non-stop exasperation: He's climbing the stairs on the outside of the banister. He's chewing up yet another shirt beyond redemption (literally). He's stomping and whooping, fingers in his ears when he's requested to stop, until the downstairs neighbors complain. The last several months, though, Mo has taken a further dip below angel status. Tiredness or hunger seem more and more often to get expressed as anger. He wants eggs for dinner, not chicken, so he up-ends a chair, then looks around to see what other destruction he can wreak. He gets a look before he revs into high gear, like his body is harboring an explosive he can't contain. The techniques his father and I typically employ to calm him or divert him from further negative behavior--tight hugs, rough-housing, having him lift or push heavy things, or simply getting some food in him fast!--aren't working. Last week, Mo awoke in the middle of the night and went from zero to sixty in an instant. It was like a seizure, the way it came on. He was clearly unable to stop himself; I'm not sure he was even awake. I had to hold him (tightly) for forty minutes while he lashed out at the closest available target: me. But it's one thing to lose it with mom or dad, quite another with the sitter.

My biggest fear is that Mo is heading down the same road as his sister...to special ed. I'll admit this is a HUGE leap, a paranoid fantasy. Mo has none of the social or executive function difficulties Sasha, diagnosed with ADHD and Asperger's Syndrome, has. He is well-liked, plays well with others. He had one bad day. He's five and a half. These things happen.

But here's how my paranoid fantasy plays out: He hits the sitter, which opens the door to exhibiting inappropriate behavior with others, in other venues. One day in school, he hits another child. An isolated incident. Then it happens again. Word travels. Other parents talk. They start to keep their kids a safe distance. Mo begins to see himself as a problem, feels more out of control. He "loses it" in public on a regular basis. The school, adding aggression to his already established issues of distraction and auditory processing, wants him out. And where could he go? Not to public school--that would only exacerbate the impulsivity and distraction issues we put him in private school to avert. So what's left? You guessed it: special ed.

The other inevitability I dread is medication. Sasha started meds at the tender age of six--a particularly difficult decision for me and my husband, both of us medication-averse granola types. But after several incidents in school, and the normally-unflappable first grade teacher informing us that Sasha would not be allowed on class trips without a personal escort, we decided medication was worth a try. Her first day on Ritalin, when I picked her up from school, Sasha's first words to me were, "Mommy, I tried my best today...and it worked!" My husband and I had to reckon with the fact that our daughter's body lacked (or didn't process efficiently or didn't produce in great enough quantities) the chemicals necessary for basic everyday functioning. She attends better, and is happier and safer, using medication.

But with Mo, we're determined for things to go differently. We know the family history now, our genetic weakness for neurological dysfunctions, the most common one being ADHD. When Mo first exhibited signs of it as a toddler, we saw the writing on the wall, and it read, "Ritalin". We still think we can beat it. He's had occupational therapy since age two to help with his sensory and motor issues. We employ charts, rewards, the same behavioral methods we use with Sasha. We try (with varying success) to be consistent, structured, prepare for transitions. All of this to prevent Mo from developing ADHD. As if we can.

After we'd all calmed down from the sitter incident , I asked Mo how we could help him control himself better. "Give me calm medicine," he said at once. "Every day." He meant the homeopathic sugar pills (mainly chamomile) I'll sometimes give when he's particularly hyped-up. Personally, I think they do little more than provide me with a course of action to follow during stressful moments. Placebo-effect or no, Moe thinks they work.

What does that say? For one, that he feels out of control, and wants help. Maybe his calm medicine really does calm him--physically, not just emotionally. By that token, real medication would help him more. Would I deny him that help simply because I have trouble enough accepting that one of my children needs medication, let alone two?

But is medication the answer? Mo’s response was clear, but the situation is far from it. How often has he heard Sasha, caught at some wrongdoing, whine, "It’s not my fault! My medicine’s worn off!" While my husband and I always counter that excuse by reminding her she is responsible for her behavior, medication or no, that’s probably not the part Mo hears. He sees that, despite what we say about responsibility, we continue to administer medication. And pill-popping carries its own (peculiarly American) mystique. Every day, Mo watches his older sister complacently accept the pill I hand her, wash it down with water. A ritual to inspire envy. The way, growing up, I envied kids who wore retainers.

Now, although I’ve hardly begun to plumb the depths of this issue, I'm also over-complicating. I’m looking at the situation through the lens of my fears, of what I know about family genetics, of what I’ve already gone through with Sasha. And one could argue that, given past events, this is justified. That I’m wise to prepare myself. But I need to keep perspective here. There is also the possibility that yesterday’s events are best forgotten, and that dwelling on them could actually increase the likelihood of my fears coming to pass. There’s no way of predicting the future. I can’t prevent Mo from developing ADHD, nor can I spur him on towards it. His central nervous system could be showing signs of trouble to come, or simply maturing slower than average and will eventually self-regulate more efficiently. For now though, all I know for sure is that yesterday was a bad day.

"My Biggest Fear" appears in the the forthcoming anthology, The Elephant in the Playroom: Ordinary Parents Write Intimately and Honestly About the Extraordinary Highs and Heartbreaking Lows of Raising Kids with Special Needs, edited by Denise Brodey (Penguin, 2007).

My Love for David Byrne

It's his sound, the way he moves and thinks, even (though I don't claim to even know) the way he feels. He's wacky, child-like, daring. He experiments, synthesizes other styles and cultures into his music. He's always playing--with the way he uses his voice, the way he moves his body, the world around him. I love his energy, and that he seems himself and not a "cool" rock star, even though he so is one. I mean, you've got to love someone who can pull off wearing a brown UPS-like uniform with white saddle shoes. I love how he doesn't rush himself, takes his time figuring out what he wants to say and do, but he's also spontaneous. I love him most for his music. He never loses track of rhythm and melody. I love him for making me lay aside my deep irritation at bone-thumpingly loud sounds, and get out of my seat to dance. All right, I'm gushing.

Granted, I'm coming down from the high of a fantastic concert last night. Gilberto Gil and David Byrne, two of my favorites! I've loved Gil's music for years, and also enjoyed his performance last night, but right now the experience of seeing and hearing David Byrne is welling up strongly in me and I want to look at why.

What strikes me is his unconventionality. It's hard to pinpoint exactly what defines this. Is it his characteristically intense poker-faced stare that skirts eye contact? (Though last night he broke into wide smiles several times.) His rubber-kneed dancing? The way he gyrates his hips while the top half of him appears frozen? His hauntingly nasal voice? Are his nonsensical lyrics and banshee whoops what make him unconventional? Whatever it is, everything about him seems so. At the same time, I never get the sense that it is unconvention for the sake of it, in terms of rejecting convention, more that he is playing with convention, but mostly--and here's the point--just being himself. And for this, he is loved.

But as much as David Byrne and his music are accepted and loved by a wide audience, both multi-generational and multi-cultural, I imagine that as a child, a teenager, a young adult, he was misunderstood, unaccepted, outcast, labelled as weird or crazy, socially awkward or inept. Assuming this was true, how did he overcome rejection, ignore ridicule and put himself out there? How did he come to believe in himself? What support did he have along the way? Did his parents recognize his genius and talent? Did they cheer him on, or devalue his eccentricities? Neither? Both? In what ways did he have to mature in order to "come into himself"? And here's the rub, what makes certain behaviors--like single-mindedness, lack of affect, a "strange" mode of moving, speaking in a whine--pathological, something needing correction, and when do they become wonderful, unique talents? Who put the Ab in Abbie Normal? (I think there's a song forming here.)

As a parent, particularly a parent of a special needs child, there is always a question shadowing me: Does Sasha really need to...calm down, focus, follow directions, do her schoolwork, write neatly, get enough sleep, eat at mealtimes, be polite, follow a set routine, clean up after herself, maintain friendships, etc., etc. or is it just me--or society--that needs her to do or be these things? What does Sasha need to be happy with herself and to manage in the world?

No answers, as usual. Just unrelenting questions.

And for the record, my love for David Byrne is not nearly as conflictual to my marriage as is my love of chocolate.

The Question

If I think Sasha will enjoy a particular book, I never suggest she read it. I leave it lying around. Not until it has gathered an air of familiarity will she pick it up. One book I left lying around was ASPERGER'S SYNDROME, THE UNIVERSE AND EVERYTHING. In it, ten-year-old KENNETH HALL describes his life, the "jammie days" when he lounges around the house, books he likes, his singular devotion to grated Red Leicester cheese, his problems controlling his temper and being around other people, the behavior modification program his mother uses with him, how he came to be homeschooled and to pass England's math achievements six years early. A simple book, really, but it was like a window into my daughter. Sasha, like Kenneth Hall, has been diagnosed with Asperger's Syndrome, which in the most simplistic of terms means high functioning autism, high intelligence and verbal ability coupled with low social skills and a low sensory threshold.

When Sasha found the book, she devoured it. She particularly liked the notion of "jammie days," an activity to which we already subscribed. A few days after reading the book, Sasha, then age seven, asked, "Do I have Asperger's Syndrome?"

I paused. For me, the jury was still out on that question. As with most kids with special needs, my child's constellation of idiosyncracies fall sloppily inside and outside of all the boxes of possible diagnoses. I started to say, "You have some features of...," then stopped, caught up in the ambiguities I was constantly mulling over in my mind. No, I thought. She needs an answer. "Yes," I said, "you have Asperger's Syndrome."

"I'm so relieved," Sasha said.

"Relieved?" I asked, unsure if I was.

"Yes. I always knew I thought differently than other people. I like that I'm special. Like Kenneth Hall is special too."

For the next few months, while I expected Sasha to struggle with this new information, she felt she had gained a new understanding of herself. Some expressed disapproval that I would tell Sasha this about herself at such a young age. And I had my own concerns.

I worried she would tell the world she had Asperger's. And she did. She revealed this personal matter indiscriminately, without consideration for how others might regard her (or her parents)--or for the potency of her words. Asperger's. Autism. Both words set my scalp ringing when I was first told they might have a bearing on my family. It is only through a rigorous re-education that I have begun to dismantle the negative wallop those words packed for me. How was Sasha to understand that, while she had no more choice in having Asperger's than a diabetic does about having diabetes, the world did not yet comprehend this? She would be judged, excluded, dismissed, pitied.I worried that she would use Asperger's as an excuse to back out of situations that overwhelmed her. And she did. She told the gym teacher that Asperger's was the reason she couldn't participate in gym. Which got her sent to the principal's office for insolence. In truth, it was a valid excuse, but because of her Asperger's she could not articulate that the noise and fast pace of the gym class quite literally overloaded her nervous system, basically causing her to short-circuit--in this case, by prancing back and forth along the sidelines and whistling frantically to block out the external chaos.

While I worried about how her new-found identity would affect her self-esteem, Sasha was helping me come to terms with her Asperger's, continually pointing out to me the wonderful gifts and qualities that go along with having AS. It is good to think and feel differently than others and not be overly concerned about others' opinions, to be bright and curious, unaccepting of established modes of thought and behavior. My concerns aside, "Asperger's" gave Sasha a name for what she perceived, but could not express, about how she differed from her peers.

While society spends much time addressing the negatives of labelling (that is, seeing a person only for one aspect of him/herself), non-labelling, denying or not acknowledging an aspect of a person, is equally dangerous. If I shunned the word "Asperger's" Sasha might conclude, If no one wants to say what I am, I must be bad. An infinitely more sinister problem to overcome than labelling is shame--internal labelling (of the negative kind). Despite the ambiguities of Sasha's diagnosis, assuming (for the time being) that it is correct, frees us, me and her both, from the confusing sea of possibilities we, all of us, become mired in when something is not right, something, in fact, is very wrong, but we don't know what it is. Diagnosis gives us a way out of the confusion, an approach to try.

A year and a half after Sasha asked her question, she has only a rudimentary understanding of what Asperger's means. For that matter, so do I. It may be that, in time, this name will not fit her, or not well enough. But doesn't every child--every person, for that matter--grapple with such questions? Identity is a fluid, organically-developing thing. Titles like artist, mother, friend, activist are lenses through which to view ourselves, locate ourselves in the world. We also, sometimes unconsciously, define ourselves in other ways: sensitive, middle child, night owl, asthmatic, victim. Even labels with negative connotations can serve positive purposes: to judge or understand, to initiate change (hopefully for the better), self-acceptance. Achieving any of these ends, especially the last, self-acceptance, is impossible without first recognizing a facet of ourselves and putting a name to it.

"The Question" appears as "Katie's Question" in the anthology, Voices from the Spectrum: Parents, Grandparents, Siblings, People with Autism, and Professionals Share Their Wisdom, Edited by Cindy N. Ariel and Robert A. Naseef (Jessica Kingsley Publishers, 2006)