Urban Mamas

I'm the mother of a kid with Asperger's, and dear friends who have kids with Down Syndrome. I've watched as our cultural relationship to children with minor and major developmental disabilities has changed; when I was in high school, the students who were friends with the kids in the classroom behind the cafeteria were looked on with a mixture of awe and utter incomprehension. It was something like sainthood: lovely, admirable, but most couldn't see themselves on that path. But now, it's not unusual for children with Down Syndrome to be beloved by their classmates, and the ones with the kind of dear social ineptitude I sometimes see in my own child, tolerated with kindness. I've had conversations with the high schoolers I coach about the "r" word. All agree, it's totally uncool. I've watched my kids interact with children who have a variety of disabilities, and it's just a thing. Something that is, and is not to be pitied, or belittled, and does not detract from the coolness of the kid.

We have a harder time in my house with that word. My husband's family grew up in what seems to me to have been a lot of bigotry. (It was probably not unusual for the time, but my current context makes a stark contrast.) I'm often left correcting my brother-in-law for his use of the "r" word, or some similarly unacceptable cultural slur. I know he doesn't really mean any of this, and my kids are savvy enough to know that it's not o.k. just because their uncle says it, but it still rankles. I often pull him aside and have the talk with him, this is his nephew he's slurring, and the boys' friends -- he apologizes, promises to work harder. I get it. It's hard to undo that kind of aculturization.

I tend to forgive my brother-in-law. But I can't really forgive someone like Ann Coulter. That's why this post was incredible -- it took Ann to task for her slur, and yet, forgave her. (I want to see her fired, and her audience ripped from her, honestly.)

I keep thinking, oh how far we've come! And then something like this happens -- our President called the R-word by someone with a huge platform, who is paid well for her bombast -- and I think, oh dear. We Americans are still those people. We're still the bigots.

Can we change? Can we do like our children are doing already? How common is the Coulter sort of aculturization? Is Portland a bubble of peace and love? If it's a bubble, it's a bubble I'm happy to live in -- but I so look forward to the way forward. Do you ever hear the "r" word, or is it going away in your world too?

I was so angry when told, before my youngest's third birthday, that he'd be probably diagnosed with ADHD and Oppositional Defiant Disorder when he turned five (and those were "allowable" diagnoses). And here I am with a four-and-a-half-year-old, diagnosing him myself with some major attention problems.

Lots of the people who know him don't see it; his Multnomah County early intervention specialist only sees the sweet compliant Monroe (45 minutes a week) and always seems surprised when I tell her about his escapades. Even some other adults who see him in the community don't see it; he's active, yes, but what four-year-old isn't?

That's when I have to start telling stories. Like the time, a few weeks ago, when we went to the beach with my dad on a spectacularly stormy day. We just wanted to go feel the crazy wind and see the amazing waves and run around a little in the weather, and we drove from my dad's house to Oswald West, where the Short Sands creek comes into the ocean. We ran around for a while, and Everett and I were experimenting with overspeed running: watching the gusts of wind come at us, then turning around and sprinting and letting the wind push us fast fast fast. We'd gone over all the dangers of the place with the younger boys -- the waves that could pull you under, the slippery rocks, the stream, which shouldn't be messed with.

I turned around when my dad shouted, "Monroe!" He was in the center of the stream, right before it hit the sand and widened -- where it was deep enough to come up to his chest. Dad had seen him just charge right into the center of it, just run right into the stream, and get pushed under by the current. He had to wade in to get him out, and there we were, a soaking wet kid and a grandpa with his shoes all squelchy, with the wind ripping around us and the rain and the less-than-40 degrees temperature. I scooped Monroe up. "I shouldn't have done that, right?" he said to me.

Sometime between Valentine's Day and the following Friday, I decided to home school Everett. Now eight-and-a-half and having just passed his third-year special education re-evaluation (still qualifies under the eye-rolling educational diagnosis of "severe emotional disturbance"), I had been thinking (along with the teachers and administrators) all the way into January that things were getting better. Never the sort of kid to have enough good days in a row for successful extracurricular involvement, I'd signed him up for LEGO club, which he participated in through to the end commendably. We'd agreed to do "Battle of the Books," and I was the team parent, and had read the books with him. The assembly where he and his team would compete for a chance at regional tournament was coming up on the 18th.

What's more, he was generally getting along with his teacher, though he'd been through four that year; one permanent teacher who took a job elsewhere; one long-term substitute; one new permanent teacher; then the last one, the day after new-permanent-teacher took over. We all decided it would be best to move him to the older class (the only third-grader in the behavioral classrooms at Bridger, he had been the oldest in K-3 and was more appropriately served, we thought, as the youngest in 3-5). At first, things went great.

Until they didn't. One bad day turned into a week-long bus suspension (shortly after we'd gotten the paperwork done for both boys to take the bus) and then suddenly, he and a friend were suspended. On Valentine's Day, we had a re-entry meeting and, after handing out his dragon valentines, it became obvious that he wasn't emotionally ready to re-enter. Not on Wednesday, either. We missed the Battle of the Books assembly -- the one we'd been reading for since October. On Friday, the counsellor came by and I told her how I felt about this right now: that home schooling might be a better option. About the same time, Rebecca invited me to Get the Scoop on Schooling, "an Evening of Information, Inspiration, and Clarity about Educational Options for Our Children" (Monday February 28 at The Warehouse, 6:30 p.m.). I responded "yes" immediately.

After years of considering this option, and many times typing or saying to someone in the heat of emotion, "I'm THIS close to homeschooling!", the balance had tipped. I felt it was inevitable and that continuing in public school had no possible good ending.

So, we haven't officially launched the "community" function of the site, but we are glad you are using it!  A mama recently posted there, and we thought we'd better post her question on the front page to see if someone can lend some insight:

Anyone had the experience of Portland Public Schools Early Intervention diagnosing your little on the Autism Spectrum, but your Pediatrician, Ped Neurologist, Occupational Therapist, Speech Therapist, and Ped Behaviorist all disagree, and say no Autism, no Asperger, no Spectrum?  I'm totally confused and baffled.  I didn’t want to sign their evaluation, but I did.  Am I being a baby and not dealing with reality of labels?  Any words of wisdom would be welcome. Thanks!

I was chit-chatting with a friend earlier, and she talked about her 13-yo son and his biweekly counseling sessions.  He has ADD, which accompanies a host of other emotional issues for him including anxiety and depression.  The counseling sessions really work for him.  

We got to talking about my biggest girl and her emotional swings of late, surely a thing of growing up.  Then my friend suggested: "Why not have her see somebody"  I said, "Like a therapist?"  My friend thinks that having someone, a third-party, to have as a sounding board, is a good thing for a youth in their pre-tween to teenage years.  But, I thought, aren't her friends supposed to be that "someone to talk to"?  What about other close friends who are adults?  And, even, how about me, her mother?

There are situations when a therapist makes sense for our children, but - after my friend's suggestion - I am wondering, when *does* it make sense?  Has your child gone to counseling or to a therapist?  For what goals?  And, do you have some suggestions in the Portland-area?

Some districts started in the last two weeks, but most students in PPS and surrounding districts have the first day of school today, with kindergarteners coming to class later this week. I dropped off my third-grader, Everett, this morning at Bridger School, where he's in the behavioral classroom. We were a few minutes late; evidently, I'm not as speedy a bicyclist as I remember being last spring. We passed by a few schools on our bike ride; I recognized mamas and papas I knew ushering kids out of cars at Atkinson, and there were so many pedestrians we had to wait at a crosswalk with our bike just for them to clear the corner. Eagerness, first day photos, and cool outfits were everywhere!

Everett was eager for the first day of school, but it's tempered for both of us with concern. He's had a hard time these three-going-on-four years in grade school, and I was a little apprehensive about his move into the classroom -- literally inches away from his old K-2 classroom last year -- because I wonder whether the teacher's style will work for him. But, he was excited to be with the older kids, and separated a bit from some younger students who had challenged his coping skills the year before.

We walked into the classroom to blank faces. "Oh, Everett's going to be next door!" she said. No one had alerted the special ed students to the fact that "the numbers worked out" for third grade to be added back together with K-2. I think the teacher may be nice for him, but he really struggles coping with situations where his expectations do not match reality. His face, as he sat in a seat very near his seat last year, looked crushed.

"We're going with Disruptive Behavior Disorder," says the pediatric psychologist. She is young: the sort of young that goes with lots of experience working with parents and small children, seriously impressive degrees, knowledge, decisiveness. In fact, looking at her resume later, I decide she may be exactly my age. But her manner, her aspect, young.

The patient is my not-quite-three-year-old son, Monroe; I'd started this quest to get him diagnosed by a storied medical organization up on this hill of inquiry six months ago; for what? I ask myself in these spare moments after receiving the diagnosis. What did I expect? All pediatric psychologists and special education teams have for my children is a (damning) name for the symptoms I'm reporting to them. All they have is a knowledge -- from this brief interview, these questionnaires with acronyms and insufficient answer choices (there's no "it's complicated," or, "are you kidding me?" or, "but I love this kid with every inch of me" as options) -- that I've given them, that they've observed with the shapes and the little plastic bolt-and-nut. He can sort the shapes, he can screw the screw, he can tell you he's a boy and I'm his mama. He can say "I loff you!" and call blue "boo" and ask where "muffin" has gone ("my friend," I translate after a minute, a little boy only 11 months, Monroe was so sweet with him). He eats kale and garbanzo beans and picks raspberries right off the bush. He hits me, bites his brother so hard it bruises, stomps, throws things, breaks them, screams! screams! when he's angry. He's angry a lot, far more than is right.

What I wanted, I decide after much questioning myself, was a reason, if only a guess! a supposition!, something to look back to and say, "ahh," sorrowfully, to avoid next time, to purge from my life, from which to warn others away. I wanted to know how to wean this child so I can sleep better, manage better. I wanted a solution. Not a thoroughly bad name for what I already know.

As if to punctuate the news I was listening to on NPR on the morning of February 10, rapt and horrified, as soon as the piece on the draft of the new 'Diagnostic and Statistical Manual of Mental Disorders' released by the American Psychiatric Association today, Monroe rolled over, asked to nurse, and when refused, screamed and punched me in a brief, intense fit of anger. The news, at least in part: mental health medical professionals will be urged to consider an alternative to pediatric bipolar disorder, a label currently on the chart of a whopping 1 million (!!) (!!!!!!!) children in the U.S.: temper dysregulation disorder. I do know that I'm not qualified to make this diagnosis myself, but the child described by the mother in this piece is my seven-year-old; he's also my two-year-old; oh my god OHMYGOD if Everett were to have been diagnosed with bipolar disorder?

I learn after listening to a few more pieces on the subject, if Everett were to have been diagnosed with BPD, he'd still be at Grout; given the oppositional/defiant disorder "diagnosis" handed to us by a parenting coach and shared with the school -- I'd no idea at the time I was possibly creating a Berlin Wall's-worth of barriers for my poor child's future -- he had to be sent to a special school, not mainstreamed with gentle love and school district-provided assistance. So-called "conduct" disorders like oppositional/defiant, once on his chart, allow school districts to remove your child from the mainstream. There may be many drawbacks to temper dysregulation disorder -- I've been reading a wide range of them in the past few days (for instance, it's limited to children between six and 10, perhaps leaving the window open for psychiatrists to consider it a precursor to bipolar disorder and, thus, prescribe the anti-psychotics that are precisely the enormous concern of parents and activists surrounding pediatric bipolar disorder) -- but its availability as a more accurate diagnosis for kids like Everett, being biological and not conduct-based, could open up educational options.

The other big news was that Asperger's Syndrome will be removed from the manual (which isn't published until 2013), with the recommendation that children who meet the current criteria for Asperger's be instead diagnosed with Autism Spectrum Disorder. This, too, could have far-reaching effects mostly centered around public school accomodations and social service eligibility, with perhaps a minor effect on which treatments would be reimbursed by insurance companies.

I'm working on a larger article about this and will be interviewing a few pediatricians and other experts in the next day or so; I'd love to hear your thoughts and perhaps weave them into my interviews. I'd also be interested to see if any of you with children who fit either diagnosis "basket" were heartened, or terrified by the news? Did you see relief or great worry? I have so many rather weighty questions that I don't think the experts can answer (should Everett have been placed on anti-psychotics? Are the anti-depressants he is taking ultimately harmful? Just how badly did I effect his future by allowing that conduct disorder diagnosis? What about the kids who are on anti-psychotics? I million freakin' bipolar kids? How could that be?)

An urbanPapa friend and I engaged in a lively philosophical debate via chat yesterday evening while I should have been cooking dinner. At issue, the looming opening of school choice transfer applications for kindergarteners -- this Friday, January 29, at 8 a.m. schools throughout the district will begin accepting them, as well as registration forms for neighborhood kindergarteners. Should he apply for transfer, or just accept the fate his home purchase a decade or more ago had set for him?

I told him I thought Atkinson, his neighborhood choice, was a good one; he wondered about the test scores there, which were not what you'd call a "home run." Atkinson got a grade of "satisfactory" in the District's report cards [pdf link] (you can find other Oregon district report cards, with data on individual schools, here.) He asked what was partly a rhetorical question: "do test scores matter?" 

My perspective was this: test scores are a snapshot that tells you how well third, fourth and fifth graders in your district take tests. It has much to do with demographics; students who are minorities typically do worse, as do those for whom English is a second language. Yes, we know this, he said, but white students in Atkinson weren't doing great, either. This, I said, was again a snapshot of demographics; poorer students do worse, on average. This tells you nothing more than "the majority students in my school are not, on average, students with the high level of parent involvement that guarantees better results on standardized tests." It is not a reflection, I said, on teacher competence or whether or not your child will thrive there. It's just a demographic snapshot. Unless your neighborhood school is a war zone (I'm not saying we don't have any of those in Portland, just unless), your risk of a bad educational experience is equally great at a great neighborhood school, a poor neighborhood school, a charter school, or a private school.

Sidebar: Kindergarten roundups [pdf link] actually started last week: you've missed the dates for Arleta and Ainsworth -- sorry! Atkinson was this morning at 9:30 a.m., but has another at 6 p.m. Feb 4. Astor is tonight at 6:30 p.m. Forest Park and Rieke are tomorrow at 3 p.m. and 7 p.m., respectively. The rest start next week. If you decide you love a school other than your neighborhood school, you must list it as first choice to have a chance in the lottery. Also: if there is choice between half-day and full-day kindergarten in your school, you will want to turn your application in right at 8 a.m. if you want the full-day option; they fill up fast. We have a growing resource in our schools forum, which provides at least a little information and a chance to connect with parents for each school in the PPS, many private schools, and those from some surrounding suburbs and towns. Last year, we talked about kindergarten roundups and school choice, although most of the comments there do pertain strictly to 2009.

He countered, saying, "there is no question that educational reputation affects people's lives. I can't say it affects whether they are happy, but it does affect what kind of jobs they get. For example, top competitive positions at corps and in government are filled predominantly by people from about 5 or 10 universities. Ivy League plus a few others. Shouldn't I give him that opportunity if it's there for me?" He acknowledged that stating this was a departure for him; he'd just as soon give a screed on how owning land should be illegal.

Yes, I said, but there are so many unknowns for a kindergartener, and the test results of kids who are now in fourth grade -- who won't interact with your son at all -- are hardly likely to influence this much.

We're struggling a lot with depression and anxiety here; my husband's afflicted, and so is my oldest son. More and more lately, I remember my parents worrying about the depression of one of my sisters, who has thankfully grown into an emotionally-balanced adult. Around this time of the year, it's always compounded, and speaking from experience I know that trying to enjoy the holidays with a loved family member predicting the imminent end of the world as we know it is a challenge, indeed. Sara writes:

I've posted before asking for advice about depression-proofing my daughter. She's now five, an articulate, silly, curious, thoughtful kid with a decidedly negative personality. She seizes on the negative elements of every experience, and creates huge drama-tornadoes of misery and despair. I am very concerned that she is going to grow up into an unhappy adult, the person (we all know this person) who sucks the joy out of everything. We spend a lot of time talking to her about this, trying to guide her toward more positive ways of thinking ("you're talking about the problem; do you need help talking about a solution?"), etc., and it has helped a lot at various times, but... not now. Now it just seems to be making her feel worse, like not only is the (in my opinion) minor inconvenience that she's experiencing Absolutely The End of The World, but she's also A Terrible, Terrible Person because she can't look at it positively. It is clear to all of us that this is her personality, not just a phase (though being five is NOT easy, so there's some phase-y-ness in there, too). She is never going to be a glass-half-full person. I don't want to change who she is, and I don't actually think there's anything wrong with inclining to the negative. I just don't want it to be all she is.

So I need your help, community. How can I help my daughter grow up to be at least a not-miserable person? How can I help her learn more positive approaches without communicating to her that her feelings (and her basic personality) are wrong and bad?

What advice do you have for Sara? If you also have family members struggling with depression and anxiety, how do you find your way to a happy holiday for you and the more cheery members of your family?

We know how important it is to get feedback on programs that are unfamiliar to us.  To that end, an urbanMama recently emailed:

I have a 5-year-old son with ADHD and am looking at ways to provide him support outside of the services he is receiving in kindergarten.  I am potentially interested in the Children’s Program, but they charge $175 for an initial consultation and I’m nervous about paying that much without having any other feedback on their programs or services.  If anyone out there has used them for any groups or classes or workshops and can share their thoughts (good, bad or other), I would really appreciate it!  The information and group descriptions look promising, but I would feel so much better about moving forward if I hear from some of you.   I would also be interested in hearing about any other places that provide similar services.  Thank you!