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.

Who's Polluting My Pool?

Lately I’ve felt so scattered by all that I have to do that I can’t seem to settle my mind enough to concentrate on a book. But today I had go to Sasha’s school, which is way out at the end of a subway line, so I took something to read for the ride, Women Who Run With the Wolves: Myths and Stories of the Wild Woman Archetype by Clarissa Pinkola Estés. This book is a kind of a touchstone, or I Ching, for me. Every so often, I pick it up and read a bit. Whatever story I chance upon always seems uncannily relevant to my life at the moment, exactly the wild woman wisdom I need to hear.

The chapter I opened to was about creativity, characterized as a flowing river, ever-replenishing, from which one can always draw sustenance--unless something is blocking the flow. Aha, I thought, just the thing! I have a million writing ideas percolating inside me these days but can’t seem to get them out on the page. The book relayed a cautionary tale, La Llorona, about creativity being blocked: La Llorona, a poor woman, takes up with a rich man, who gives her two children. He then decides to take them and leave La Llorona for someone his family chose for him. Crazed, La Llorona throws the children in the river, they drown, then she falls to the riverbank and dies of grief. In one version of the tale, the man is a rich manufacturer, and when La Llorona is pregnant with his children, she drinks from the river, which is polluted by his factories. Her twin babies are born blind and with webbed feet. The man rejects both La Llorona and the babies. She throws them into the river rather than subject them to the hard life before them, then dies of grief herself. In order to enter heaven, La Llorona must find the souls of her babies--in the second version the water is too polluted to see into--and wanders the riverbanks ever after, calling for them.

Pretty gruesome, huh? Pinkola Estés explains the tale in terms of creativity: La Llorona allowed her river, her life source, become polluted, poisoned, by a destructive animus--in this case, the rich man. I tried to decipher this tale’s relevance to me. Yeah, it’s true I’m not making good use of my creative energies lately. Too much kid business to attend to, worries about finances, encroachments on my time. But I also have the loving support of family and friends, who--generally-- do not sap my energy. No destructive animus here, I decided. No one polluting my pool. Nope. The tale was meant for someone else.

I exited the train at the end of the line, and met up with Ozzie. Together we went to Sasha's school for a conference I myself had requested for the purpose of opening a dialogue about mainstreaming Sasha. I wanted to be up front with Hillside that this is a goal of ours, and that we need their help to prepare Sasha, both academically and emotionally, for the transition. I hoped they would share their expertise about which schools would be better suited for Sasha, and would help us establish relationships with those schools. From past experience, I knew that addressing parents’ concerns was not Hillside's forté but the process of mainstreaming required their participation.

Ozzie and I anticipated that they would insist that Sasha couldn't be mainstreamed, that she was doing terribly. But the meeting opened with one teacher plunking down a huge volume listing the city's hundreds of public high schools in front of me and Ozzie. That’s good, I thought. They’re listening, trying to help. But then began a subtler method of dissuasion: they cautioned us about large, overwhelming schools, oversized classes, dangerous neighborhoods. When we asked what schools they recommended, they shrugged their shoulders. They gave anecdotes illustrating Sasha’s immaturity and unreadiness. Always her failings were in spite of Hillside's wonderful program that fully addressed the students' academic and social/emotional needs. Then I understood. The list of schools was a raft they were throwing out to us since we were (ill-advisedly) choosing to venture out into the ocean of other school possibilities. They fully expected us to drown.

We left the meeting feeling sapped of the very energy we need to accomplish our goal. I felt poisoned. Then it hit me: the destructive animus. It's the school! Although Hillside has helped Sasha in many ways, the majority of my interactions with them have been supremely frustrating. When I've expressed concerns about Sasha not getting any homework, or watching (uneducational, PG-13) movies in class, or not being challenged, I have felt, at the very least, unlistened to and more often than not, demoralized, alienated, mute, powerless. What can I do? There's no place else to go. Sasha likes it there. But now we are exploring leaving, mainstreaming. We're still in the initial stages of feeling out whether it's even possible and if so, where, but I feel a rush of energy at the idea that I, as a parent, may not always have to swallow this poison. Even if we don't end up mainstreaming Sasha, just recognizing the source of the pollution has helped unblock my creative flow. The water's clearer than it was before; I can see deeper into the pool. Wild woman wisdom at work.

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).