Our Five-Year-Old Gleek

There's no doubt that Mali, like me, is a third child. I watched the entirely inappropriate Fantasy Island and Stir Crazy (we had one of the first VCRs in town, with bootleg videos to match), she watches Glee and Lord of the Rings. But whereas I longed to be best friends with Loni Anderson and learned to swear like Richard Pryor, she (and her big sister) are learning to love music from multiple genres, and learning geek lore and cred that will benefit them forever.

Here is one of Mali's latest bursts of enthusiasm:



It reads, "My favorite Glee songs: Bust the Windows, Hate on Me, Defying Gravity" and then has drawings of Mercedes ("Mrsadis"), Kurt ("Kirt") and Rachel ("Ra," she ran out of room).

The most fun part of having two Gleek girls is introducing them to the songs under the Glee covers. After watching Rachel nail "Don't Rain on My Parade," Iz spent hours on YouTube, watching Barbra Streisand videos (she is also starting to imitate Celine Dion's spangled dress sense, but we're working on that). Mali tends to like Mercedes's songs, so I showed her Jill Scott's original take on "Hate On Me"



She watched the video, then turned to me with saucer eyes and gasped, "She's AMAZING!!" And now, when she draws flowers, she likes to give them "Jill Scott hair."

I'm so pleased that she likes music beyond the kiddie tunes. It makes our car time especially so much more pleasant.

As for LOTR, I caught her reading the Two Towers last night (the movie photo guide) after lights were supposed to be out. She didn't fuss when I took the book from her, but did insist that I give her back her "Precioussss," as she is calling her stuffed cheetah.

Oh yes, raising them right.

Medication Sea Change

I took Leelo in for a fasting blood draw this morning. By "fasting blood draw" I mean our boy went twelve straight hours without food -- a real challenge for a kid who wants to eat the moment he awakes, cries real tears if that wish is not fulfilled, and who has recently resumed early waking.

I was nervous. Which is the short version of, "By 7 PM last night, I had developed constant chest pain, as is not uncommon with an impending panic attack."

Thankfully, our boy was brave, and the blood draw swift and smooth.

The positive outcome was not entirely a matter of luck. We kept Leo up a bit late, so he was still asleep at 6 AM when I needed to wake him. I whisked the snuggly sleeping boy out of bed, onto the pot, into his clothes, and out to the car before he was truly awake, while Seymour sneakily put together a morning meds PB&J sandwich and slipped it into my purse.

We also arrived the moment the lab opened, so as to be first in line and avoid a waiting-fueled breakdown. Leelo didn't have time to get agitated, so he only tried to pull out the phlebotomy needle once, and it only took three of us to reassure him and help him stay still rather than the usual five of us to hold him down. By the time the last blood vial had been popped off his line, even the nurses were chanting, "First needle, then sandwich."

He sure enjoyed munching on that sandwich. And I enjoyed a peaceful and side-effect free morning with Leelo, even though he'd started his day off-routine with an empty stomach and a stab.

Part of his emerging ability to tolerate unpleasant scenarios is maturity -- his kind of autism means developmental delays, not developmental stasis -- but another part is the medication Risperdal, which Leelo has been taking for just over a year. And Risperdal is the reason his blood was being tested in the first place -- last month's non-fasting and therefore less reliable blood test indicated that his blood sugar and cholesterol levels are elevated, putting him at higher risk for diabetes and cardiac issues. If he shows the same elevated levels while fasting, then we may need to switch him to another medication.

I'm not thrilled, because we went through some fairly fiery hell to find Leelo the right medication, and I don't want to risk a repeat. But I'm also not surprised. Though a very low daily dose of Risperdal brought Leelo (and, so us, his family) almost an entire year of relative bliss, we're starting to realize that the drug's effectiveness is fading. He's slowly resuming the challenging sleep patterns of his first eight years, and he's starting to have less patience with adversity or the unexpected.

We know why the Risperdal is becoming less effective. He has grown a lot, gained a lot of weight over the past year, while his dosage has remained constant. But neither we nor his doctor want to raise his dosage, as it could skew his blood sugar level even further, it already makes him hungrier than usual, and we don't really want to find out what lies beyond "constantly, desperately ravenous."

What will our options be? Most other medications in Risperdal's class of antipsychotics have similar potential side effects. The best option so far seems to be Seroquel which usually brings more sedation and less weight gain, and is usually fairly effective in terms of stabilizing mood. Another occasional choice is Geodon. It's weight-neutral. But it can also change blood chemistry and electrocardiogram readings, so we'd have to do periodic EKGs -- not something Leelo would likely submit to.

Another option: sometimes when kids with autism have intense behaviors or stims, they are rooted in anxiety. The anti-anxiety drugs typically prescribed to kids like Leelo are SSRI meds like Zoloft or Prozac. Their side effects are usually not significant: sleep disturbances or increase, appetite increase, stomach upset, headache, and very occasionally they have the opposite of the intended effect.

They're worth considering, because Supervisor M thinks Leelo's lingering, cycling, currently escalating, and always present stim behaviors -- which at the moment include raspberry-style spitting, repetitive slapping of or stomping on hard surfaces such as car interiors or wooden floors, needing to slam the toilet seat several times after each potty drop, and spinning -- are actually an OCD or anxiety manifestation.

I have to admit, I'm bummed that we're having to consider switching Leelo's meds at all. He had such a great 2009, and I took none -- none! -- of it for granted, as his late-2008 Abilify-generated tantrums and violence were one of the worst periods our family has ever experienced. I am grateful to Risperdal every time I'm able to sit down with my son and watch even 15 minutes of a movie or video, if he also puts his head on my shoulder, and for the 90% certainty that he won't randomly turn around and punch me. Even though his behaviors are ramping up and his sleep is eroding, I'm still loathe to make any changes. What if it doesn't work? What if things get worse? What if, what if?

We won't know what path to take until we get the Leelo's blood test results back next week. But any interim input, opinions, experience, or citations are welcome.

Photo: Leelo at Hayes Green Playground

Disclaimer: Don't rely on me for medical advice, duh! Also, I know plenty of people whose kids had positive experiences with Abilify. Just not -- really not -- my son.

We Are Not Sparta: The Real, Justified Costs of Educating Kids With Special Needs

I am posting this with permission from my smart, tenacious, Italian-from-Italy friend Lea. Our sons went to kindergarten together.

Special Needs Children and Public Education
by Lea Cuniberti-Duran

Raising and educating children with special needs is expensive. That's just a fact.

I have attended many school district budget meetings in which officials blurted to their audience, "We cannot pay for XYZ because of our financial responsibility toward children with special needs: to educate one special needs student can cost the district $100,000 a year." I also hear about how the district has "an unfunded mandate to educate children with special needs, and how this results into an encroachment to the general fund."

As one can imagine this argument is not always well received by parents of typical kids who want a great education for their children, and are lead to believe that "all those quirky kids" are in the way. It is easy to believe the encroachment argument: how can one argue with the fact that our district has to transfer $7M from general fund to the special education department?

The school district's argument has been so effective that a good friend recently confronted my husband and me. She said she couldn't see why the district had to spend so much money to educate special need children. She resented spending $100,000 for a child who will may never be a fully contributing member of our society. Why not spend that money toward the education of all the other children, those who will be able to contribute, go to university, and have a career?

Don’t Be Fooled By the Numbers
Districts use children with special needs the way a magician uses props: as a distraction, a way to divert attention from schools underperforming because of problems that have nothing to do with special needs. Just look at the numbers: Redwood City School District spends about $10,000 per student (according to the latest data released by the district). RCSD is rated a 5 out of 10 based on State and Federal tests results for the school year 2008-09

If we look at districts around the Bay Area that, like Redwood City, are revenue-limit (meaning, they rely heavily on state funding), have the same proportion of students with special needs, YET are rated higher by GreatSchools.net; we will see that these districts spend less money per student. From this we can infer that special needs students are not the reason why school districts underperform:

• Cabrillo Unified (Half Moon Bay)
• Rated 7 out of 10
• Spending per pupil: $7,477

• San Mateo-Foster City
• Rated 7 out of 10
• Spending per pupil: $7,917

• Mountain View
• Rated 7 out of 10
• Spending per pupil: $8,433

• San Francisco
• Rated 7 out of 10
• Spending per pupil: $8,357

• Millbrae
• Rated 8 out of 10
• Spending per pupil: $7,203

• Novato
• Rated 8 out of 10
• Spending per pupil: $7,283

• Walnut Creek
• Rated 10 out of 10
• Spending per pupil: $7,281

A Good Investment
Allowing people with disabilities to reach their full potential is a good investment. With appropriate services and support, people with disabilities can lead full and productive lives. And helping those who may never be fully independent reach their full potential costs taxpayers less than funding 24/7 assistance for the rest of their lives.

We, as society, need to move away from thinking that people with a mental or physical disability cannot be contributing members of society. Just look around in your daily life, and notice some examples of people who have gone and beyond those simple expectations: my children’s occupational therapist who is missing an arm, or a tax accountant who happen to be dyslexic, or one of my personal heroes, Dr. Temple Grandin, PhD, who is a leading expert in livestock management as well as an advocate for the autism community.

Work programs can specialize in employing individuals in areas where they excel, like complex but repetitive tasks that a neurotypical person cannot perform with consistent precision. I was told of a woman with Down syndrome whose job is to prepare all the instruments for the surgeons in a mid-west hospital. Educating and teaching skills to a person with a disability may require extra resources, but it leads to more independence – so it’s not only the right thing to do, but it’s the least expensive approach.

We Are Not Sparta
We, as society, value life, and have laws to protect it. We also value diversity. Long gone is the time of Sparta when people with differences were thrown off a cliff. But in the not-so-distant past, American children with disabilities were taken away from their families and put in institutions, where they were often left in very desperate conditions: with minimal food, clothing and shelter and terrible unhygienic conditions. In 1967, for example, state institutions were homes for almost 200,000 persons with significant disabilities. Some of these institutes still exist, like the NAPA State Hospital outside Sacramento, California which has been investigate by the State as recently as 2005 for abuses and infractions against patients.

The birth of IDEA
“In the 1950s and 1960s, the Federal government, with the strong support and advocacy of family associations, such as The ARC, began to develop and validate practices for children with disabilities and their families. These practices, in turn, laid the foundation for implementing effective programs and services of early intervention and special education in states and localities across the country.” (From the US Department of Education)

This lead to the creation of IDEA (Individual with Disabilities Educational Act), which gives children with disabilities the right to a free and appropriate public education, in the least restrictive environment, with accommodations, modifications and support so that children can access their education. This law benefits ALL children with an IEP, no matter how few services he or she is receiving.

What Has IDEA Accomplished?
A few examples from the US Dept of Education:

• The majority of children with disabilities are now being educated in their neighborhood schools in regular classrooms with their non-disabled peers.
• High school graduation rates and employment rates among youth with disabilities have increased dramatically. For example, graduation rates increased 14 percent from 1984 to 1997.
• Today, post-school employment rates for youth served under IDEA are twice those of older adults with similar disabilities who did not have the benefit of IDEA.
• Post-secondary enrollments among individuals with disabilities receiving IDEA services have also sharply increased, with the percentage of college freshmen reporting disabilities more than tripling since 1978.

In Conclusion
In a year like 2010, when schools are squeezed by a state in financial disarray, when budgets and programs are slashed with a hatchet; when the panic feeling of saving money makes people cut corners; special needs children will be the easy target for blaming and the victims of further cuts. As a parent and an advocate for my children, I have pledged to stay involved, informed and calm; attend as many school board meetings as I can, and share information with other parents.

I also pledged to monitor closely the next November election, when we will elect a new governor, a US senator, and, here in San Mateo County, two new state representative (both assemblyman Ruskin and senator Simitian are out of term).

For those of us who want to make a difference, this is the time to get informed, contact the candidates, hear their prospective on issues and flex our political muscles on election day. 

I am committed to push further and follow in the footsteps of the parents and advocates before us, who fought for their children to have a more appropriate education and a dignified life.

A Formal Spanking for Dr. Andrew Wakefield, Vaccination Boogeyman

If you're a follower of the never-ending vaccines/autism chronicles, then you probably already know that Dr. Andrew Wakefield, the researcher who sparked the "vaccines cause autism" panic, has been formally sanctioned by the UK's General Medical Council. After an investigative hearing lasting more than two years, the GMC reached their verdict [PDF]: Wakefield conducted his research "dishonestly and irresponsibly."

There is so much to be pissed about when it comes to Wakefield: he was in a vaccine-injury lawyer's pocket when he conducted his original study. He had applied for a patent for a vaccine alternative to the MMR before he held the press conference that set off the vaccine/autism storm. His original study comprised only twelve children, few of whom actually met the criteria for the study. He continues to assert that his research is valid, even though 10 of his original co-authors and the journal in which his study was originally published issued formal retractions. And on. And on.

I summarized the matter for BlogHer, and included plenty of links if you'd like to spend your entire day riding an outrage-fueled adrenaline rush. Excerpt:

Have you ever wondered why, exactly, vaccines are erroneously associated with autism? I'll tell you: In 1998, Dr. Andrew Wakefield held a press conference to announce that his research had revealed a possible link between the MMR vaccine and autism. He published his findings in the respected independent medical journal The Lancet, and spent the next few years promoting his vaccine-autism "concerns" through media outlets like the TV news magazine 60 Minutes.

The result was panic, a vaccination rates nosedive, and the resurrection of vaccine-preventable diseases like measles.

In 2004, it was revealed that Wakefield had also been conducting a separate, simultaneous study funded by lawyers seeking compensation for clients who claimed their children suffered from vaccine damage. Ten of Wakefield's twelve original paper co-authors, horrified by Wakefield's conflict of interest as well as the public health crisis they'd help cause, issued an official retraction in The Lancet [PDF], stating, "We wish to make it clear that in [Wakefield's] paper no causal link was established between MMR vaccine and autism as the data were insufficient."

The facts, the deception, the denialist mercenary mindset, the damage to public health, are bad enough -- but Wakefield's actions cause additional damages. As my favorite scientist Emily so eloquently wrote:

Why do I care so much? Oh, it's not just because this hack job of science ended up in so much wasted time, money, energy, emotion, and lives. It's also because in science, we've got ethics. We're supposed to, anyway. We have standards. We've got these rules, you see, about "research involving human subjects." They're designed to keep the more nefarious among us from taking advantage of vulnerable populations, to keep them from exploiting people who are least able to defend themselves because of false hope, scientific ignorance, desperation, or incapacity.

And when a researcher, scientist, doctor violates those rules, steps outside of those bounds, acts dishonestly, doesn't act in the best interests of the children involved, they're joining ranks with the big cheaters of science. With the big selfish bastards of science who are in it only for themselves, the research "subjects" be damned. The ones who will, without compunction, do things that harm just so they can do themselves good.

Iz and I recently watched the movie Contact, in which Jodie Foster plays Ellie Arroway, an astronomer whose principles never waver, not even when doing so would let her fulfill a lifelong dream of extraterrestrial contact. My daughter's face remained naked with awe during Dr. Arroway's hearings, as it dawned on her that devotion to science means devotion to courage. It's a lesson that Dr. Wakefield could stand to learn.

Busting Someone's Windows Is Not a Logical Act

Glee was this morning's school carpool soundtrack, as per usual. Leo beamed all the way through his favorite song, Can't Fight This Feeling, which I tolerate since he loves it so much even though the original REO Speedwagon version wins my personal video award for Milquetoast 80s Guys With Long Bad Hair. Afterwards the violin intro to Bust Your Windows came on, and Iz started trying to analyze.

"Mommy, wouldn't she get in trouble for busting out his car windows? I mean, that's against the law, right?"

"Yes, but it's on private property, so she wouldn't be in trouble unless he called the police, and he'd probably be too embarrased."

"But she left her INITIALS in his WINDSHIELD with a CROWBAR!" He'd have proof that she did it!"

"Iz, you are trying to apply logic to a fictional justification of an irrational act. It's not going to work. You're going to have to let this one go."

"OH."

Indebted to BlogHer for More Than The Upcoming Autism Panel

This year's BlogHer conference includes an autism panel! Yes! Get your tickets now, they sell out fast!  

Update: I'm especially excited because the panel is partially based on my submission ... and also because BlogHer accepted my proposal to be the moderator! Which I already knew when I took a potshot at the panel's theoretical moderator below...

Update #2: Two of the speakers are Sharon da Vanport of Autism Women's Network, and Jean from Stimeyland!  The third speaker is also a huge coup for BlogHer, but has not yet gone public. Will add her as soon as she's out.

Update #3: The third speaker is ... and OMG this is huge as I have been a big fan of hers for years ... Pamela Merritt (aka SharkFu) of Angry Black Bitch! 

An autism panel is tremendously excellent news for lucky conferencegoers. Many of our most beloved and respected  bloggers will corporealize, and we'll get to spend precious time with far-flung friends from the farthest recesses of our computers. I'm especially looking forward to hanging out with my roommate, Jennyalice -- our new work-from-home lives have overwhelmed us to the point where our friendship is largely conducted through email and texts, even though we live five minutes from each other.

Friendship is what draws me to August's BlogHer conference. Two years ago, I had lost my blogging oomph. Leo was having a hard time tolerating being Leo, and we weren't having much luck making his life easier, plus my father had recently passed away. The result was a dwindling interest in things I'd previously enjoyed, including blogging.

So the BlogHer fairies intervened. Somehow, I was invited to speak at BlogHer08, on parenting our children with special needs. Which was great fun, and could have gone on for another hour, easily. I then had the privilege of getting to know the panel's social sorceress, moderator, and organizer, Susan Etlinger. Through her Jennyalice and I became IRL friends with a whole new group of women, including Christa, Kristen, Kristina, Lori, Jennifer, Vicki, and Jordan. Women who get the whys and the hows, and even the whats too painful to mention. And, even better, our kids seem to like each other, too!

Those friendships are the most precious gifts BlogHer has given me, and I am beyond grateful.

So, yes, I'm excited about the conference. I'm thrilled about the panel, I hope the audience respects BlogHer's philosophy of civil disagreement (though I suppose that will be the moderator's problem; I hope she or he has crowdthinkherding skillz.) But really, I'm just so excited to see my friends!

(Excited even though I just got to see some of them -- and their wonderful partners and/or kids -- during winter "break"):

 

The trampoline is where Leelo socializes best. Note Mali's gold lamé leggings. Remaining cute boys by Jordan and Susan.

She's brave, she's brave, oh yeah yeah yeah! Points to anyone who knows the namer who's tossing her. (Video by Jordan.)

Smoldering, in triplicate.

Leo and his friend Ben during SEPTAR's "Break from Winter Break" bounce party.

Mr. Bossypants and his biggest fan, Ms. Bossypants.

How to Be a Wicked Mother

Here's the thing about my family, the D'Artagnans: We're people pleasers. We're doggedly loyal (though gods help you if you wrong not us, but someone we love), and we'll dig to the othe side of the planet and back to make things happen for family and friends. But it can be a rather impish process. Witness:

Iz turned eleven this past weekend. All she wanted was to see Wicked -- and had been perseverating to that effect, for months. Finally, in early December, I'd had enough, and told her, "Iz, I need you to stop badgering me about Wicked, otherwise you'll never get to go." (Note that this is not a no.) So she stopped nagging. And I started plotting.

I found discount tickets online, on her birthday. I asked Seymour and Iz's Godfather Michael if they would go with her. They agreed. (I opted out as I needed to do prep for Iz's post-Wicked slumber party.) And then we came up with a plan. We told Iz that godfather Michael was taking her to Alcatraz for her birthday! What a treat! But -- she was genuinely excited, plus we realized that dressing for The Rock and dressing for The Theatre were divergent tasks.

So Michael and I confered, and revised: Oh no, Michael forgot it was a holiday weekend! Alcatraz was sold out! But he'd found an alternate event, and hoped she was as excited as he was! The following letter is all Michael's doing, I merely suggested that he think of a formal event that would underwhelm a tween:

Hello, dearest goddaughter of mine.

Your mom and dad have been kind enough to let me take you out for your birthday. How's that? I would call to ask you personally, but I won't make it home to call you until way past your bed time. When is your bed time, anyway? You're almost eleven now, it may be time to re-negotiate that with your parents. Or not. I have no power over such things, you know.

As if by some stroke of magic, the San Francisco Symphony is performing  a rare "Salute to Canada" on Saturday afternoon, hosted by that most famous of all Canadian songbirds, Anne Murray! I think (and I am sure your mother would agree) that it's high time you started to get more in touch with your glorious Canadian heritage. Two and a half hours of Bryan Adams, Paul Anka, Leonard Cohen, Stompin' John Connors, and Céline Dion songs all performed by one of the greatest symphonies in the world is just too good a thing to pass up.

The performance is at 2 pm. I thought you might like to lunch at a little place called Frjtz before hand. Please dress appropriately for the theatre.

It wil be fun and so educational!

Love,

Your Godfather

Iz tried to muster enthusiasm, but confessed to me that she felt guily about not really wanting to go, and that she'd really been looking forward to Alcatraz -- but she didn't want to disappoint her godfather since he was so excited. Poor girl!

The day arrived. And it was a big day, with multiple events: breakfast at our favorite café, her soccer game, lunch at Frjtz, a slumber party, and...

After lunch, we drove to The Orpheum. She saw its huge Wicked sign, and while that was exciting,  didn't think anything of it as were were in the Civic Center neighborhood of majestic performance spaces. But then we stopped and told her she should get out.

Because she was seeing Wicked.

SHE WAS SEEING WICKED OMG OMG OMG!!

 

Iz and her dapper Godfather exiting the minivan as her Wicked reality sets in

She basically went supernova with happiness. Which is what every parent wants for their child, yes?

Godfather gave her a hug and apologized for being friends with a mother who delights in playing tricks on her children. Seymour said she remained rapt for the entire performance. I drove off with the two littler children, quite pleased, myself. The D'Artagnan traditions are alive and well in our family.

Happy eleventh, sweet girl.

Palo Alto Junior Museum and Zoo: Expanding, Accommodating

As you may know, the Palo Alto Junior Museum and Zoo is planning to remodel, expand, and transform in the very near future. They are seeking input from local families in general, and families with members with special needs specifically, to ensure that the new Palo Alto Junior Museum and Zoo will not only be accessible but fun for all visitors.

SEPTAR, the Special Education PTA of Redwood City, is hosting a Palo Alto Junior Museum and Zoo discussion and presentation this Thursday, Jan 21, at 7 PM (more info below). As always, there will be really great company, refreshments, and hot coffee. We hope to see you there!

SEPTAR Meeting

Thursday, January 21, 2010 7:00pm

750 Bradford Redwood City, CA 94063

Please join us Thursday, January 21, 2010 at 7:00pm for a presentation and discussion

with Tina Keegan from the Palo Alto Junior Museum and Zoo.

The museum is hoping to make their exhibits and facility accessible and inclusive, and they want OUR input.

Free childcare is available.

Thank you-

Jennifer Byde Myers
President, SEPTAR

SEPTAR is the Special Education Parent Teacher Association for Redwood City. We bring families and educators together to meet the special education needs of children in Redwood City.

******

donate to the Special Education PTA, Redwood City www.septar.org

She's Not Our Cat

She's not our cat.

We feed her.

We brush her.

We pluck off her engorged ticks.

We are wary of her ... can't you tell she's FERAL?

But she's not our cat.

She's not our cat!!

A Boy and His Bike