You've Come A Long Way, Baby - LATEST!

This morning I got one of those calls that slaps you awake: "Mom? There was an accident..."

Let me just say up front: no one was hurt. Sasha's school bus was hit from behind as it braked for a light. There was a strong jolt but the bus wasn't damaged. The car that hit it was, but the driver--a teenager--was okay.

When Sasha called me (on the cell phone we got her only a month ago, for the express purpose of checking in with her on the bus), she wasn't upset. Rather, she sounded jovial--she and her busmates were cracking jokes while they waited for the cops to show and make a report. She was thrilled to be part of such a drama. More communicative than usual, she called several times to update me. They were waiting for the police. They were still waiting for the police. A couple of times she called to say hi, and once to say, "It's ironic we had the accident right in front of an auto collission repair shop, isn't it?!"

As I was scouring the aisles at Lowe's for painting supplies, Sasha called to report that all the kids would have to be examined, and now had to wait for that. By this time, the thrill of danger had devolved into boredom. The paramedics came and examined them, and determined that everyone was fine. The last series of calls, Sasha tried to convince me that she was traumatized, and needed the day to recover. She wanted me to come get her--whereever that was--and take her home, which another kid had convinced his father to do. "You have to come," she whimpered. "Right now!"

Aside from the fact that I saw no compelling reason for a school holiday and was extremely busy with a renovation project I'm anxious to finish, hey - I wasn't about to give up a premium parking space on an alternate side parking day! I was firm with Sasha. "You're fine," I cheerfully insisted. I knew she was, but to be certain, I talked to the bus driver, who put my mind at ease. "You're fine," I told Sasha again, lightly, then hung up before she could plead more.

It wasn't until after I completed my purchase and was on my way home that I realized: I needed Sasha to be fine. I needed this not to be a big deal, not a stop-everything kind of day. I'd already received that phone call. A million times in my head--every morning since the first morning the school bus pulled up to our house and we watched Sasha climb on and the bus drive away, as I waited for the bus to bring her home after school, on days it was raining or snowing, or when the bus was two hours late without any word from the driver or bus company--a million times I've gotten that call. Of course, in my head it was a lot worse. I've read too many news reports, heard too many gruesome tales. I needed this morning's call to not be that call.

Every parent who's travelled the road to special ed has had to overcome myriad hurdles along the way. The bus ride--a minimum of 45 minutes, but more often 75 to 90--was, believe it or not, one of the major hurdles for me in the decision to send Sasha to her special ed school. Before, she attended a local school ten minutes' walk from our house. The thought of her being driven crosstown, miles away, through streets rife with crazy drivers, by bus drivers of unknown backgrounds and questionable driving skills (several of whom, as I'll write in a later post, I've had good cause to be wary of) was almost enough to make me say forget Sasha's special needs, she's fine where she is. It's not worth it. But that would be making a decision based on fear, thinking small, not the big picture. And so: we send our daughter off into the world every morning, and have to trust that she will be returned safe and sound in the afternoon. We've come a long way...but there's still way too far to go.

Why I Don't Have a Blog - NEW!

As long as O.J.'s making hypothetical confessions, I might as well come forward myself: I don't have a blog called Special Focus about parenting kids with special needs. No sirree. Why not? Because I am not a special needs parent. I'm not even a parent. Or a wife. Or a woman. I'm a person, that's all. Just a regular old human.

I don't have a blog called Special Focus because I don't wish to grapple in such a public way with the difficulties life has thrown me, put them at the forefront of my daily concerns. I don't want to focus on my trials and tribulations. I'd rather not think about them at all. Which is one of the reasons I'm a fiction writer, not a blogger of special needs issues.

Why would I have a blog called Special Focus when my views might upset others, especially family and friends? Worse than that, speaking my mind might alienate teachers and faculty, and others in the special ed community, upon whom I'm dependent to help my child.

I'll admit I've entertained the notion of having such a blog. I imagine it could be therapeutic to write about my experiences. One could even argue that it fills a need for other parents of special needs kids, knowing there's someone else out there struggling with the same issues they are. Still, do I wish to proclaim to the world, "Hey, I'm a special needs parent!" like I'm proud of being somewhat of a victim? Do I want people, when they hear my name, to think of disabilities?

A few years back, my kitchen was featured in a home design magazine. In the article, the author referred to me as "young mother 'Smith'". Please! Not that there's anything wrong with being a young mother, but couldn't I at least have been pictured with spit-up stains on my blouse or Goldfish crackers coming out my ears, something to earn me such a title? Why couldn't I be "Do-It-Yourselfer Smith" or "amateur kitchen designer Smith" (or "dazzlingly beautiful Smith")?!

To tell you the truth, what I really would have liked is "brilliant writer Smith" but "young mother and writer" would be fine. Or just Writer. And since I don't have a blog called Special Focus, I don't have to worry that others will think I love writing about special needs issues, instead of writing fiction, which is where my heart is. That may be what I want people to know about me...but I'm not going to sit here and blog about it.

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?

Barbaric Yawp - NEW!

We're unassuming people, Ozzie and I. We don't like to impose ourselves on others. We don't trouble friends for rides to and from the airport. If someone cuts in front of us on the road, we don't lean on the horn (well...Ozzie might). At BYOB's and potlucks, we always bring more than our fair share. So it causes us no small amount of distress to know that we annoy the people who live downstairs. Boy, do we make noise. Stand in the living room of the first floor apartment and you'll agree: we're like a herd of elephants.

These aren't just downstairs neighbors actually, they're our tenants. And we try, really we do. We don't wear shoes in the house. If we have to go into our kitchen, which is above the tenant's master bedroom, at night, we tiptoe. We've taken to preparing the kids' lunches the afternoon before, to avoid being in the kitchen more than necessary late at night or early in the morning. And now, since we're between tenants, we're installing sound insulation. But it's hopeless. Not even the latest and greatest in acoustic absorption is a match for Sasha and Mo, a whole category of noise unto themselves.

While we've always warned prospective tenants about the noise level, and people often reassure us that our footfalls are normal, a typical and expected pitfall of city life, what we hear most frequently is this: Teach your kids not to make noise. Simple, right? No problem. Doesn't cost a cent or require the involved labor of soundproofing. Teach your kids not to make noise. Whenever I hear this, the always present knot of frustration in my belly tightens. They have NO idea.

No idea that Ozzie and I are constantly, and I mean constantly, reminding, chiding, yelling at Sasha and Mo: "Don't run!" "Don't scrape your chair along the floor." "No balls in the house." "DON'T JUMP off the furniture!" We are marshalls of noise pollution, I tell you. We employ all manner of positive reinforcements: "I notice you made only appropriate noises for the last hour." "I like how gently you pulled out that chair." We praise. We reward. But this works only just so much. Pretty soon our urgings for quiet are tuned out and Sasha and Mo's attentions turn to the urgings of their bodies, which have them careening through the house and jumping off chairs with reckless abandon. They do have AD/HD, afterall. By definition, they're going to forget--and revert to their default behavior, hyperactivity. Should I get angry at them for who they are?

I remember once telling my therapist I had too many needs. Like needing to exercise and needing time to write and needing to talk about everything and needing therapy! I figured myself to be monstrously selfish. My therapist responded, "So? You have needs. You're human. So what?" Oh.

To me, this was BIG news. You mean it's okay to have needs? Somewhere along the way, my being a conscientious member of the community morphed into being reflexively apologetic for taking up space on the planet. It was a further revelation to me to take this idea a step further and acknowledge that it's okay for my kids to have needs too. Sometimes that involves making noise. Sometimes they need to break dance to Gnarls Barkley. Or to leap through the house in joyful abandon like Maria in "The Sound of Music" bounding through her alpine meadow. So what?

Yes, why not take up space...make people aware of us...make a difference in the world? Like Walt Whitman, I say, let us sound our "barbaric YAWP over the roofs of the world"!

That...and buy an ultra sound-absorbing rug pad.

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.