2.28.2010

California Autism Excursions: Geysers, Fainting Goats, and Petrified Trees

(Meant to post this last week. Like sands through the hourglass...)

Leo was out of school this past week, while his sisters were not. This was actually a great arrangement -- Leo and I got to slingshot the girls to their respective schools, and then run to the hills for a daily hike. On Monday, Presidents Day, however, our entire family had blank slates for schedules -- so we daytripped to two semi-local places we'd never visited: Calistoga's Old Faithful Geyser, and the nearby Petrified Forest. Both were ideal destinations for our family, and Leo.

 

Leo enjoyed observing the geyser in action (we were lucky; it went off every 5 - 10 minutes), and learning the name of a new phenomena. He also loved running around the wide open yet fully enclosed Geyser grounds. We kept very close tabs on him, and didn't let him anywhere near the geyser's pool without holding his hand tightly. Not that the water is dangerous in temperature or chemical composition -- its surrounding pond roils with tadpoles.

  
Goat, sheep, and llamas live next to the geyser, and are covered by the same entrance fee. Mali apparently speaks goat, as here she is tells one of the more enthusiastic herd members to back off. This is not a fainting goat, though there were fainting goats. It is also not a llama, though there were llamas and I now know through hand-feeding/sensory experience that llamas have bifurcated and independently prehensile upper lips. *shudder* We also got to see a one-day-old baby lamb! CUTE!

  
After more ruminant petting and feeding, we all wanted to revisit the geyser -- but when it started spouting from Iz's head, we knew it was time to go. Especially since it was such an awful, awful February afternoon here in California. I mean, look at those skies! *ducks* (This was written when the entire East Coast was under 10 feet of snow.)

 

Next we drove over to the Petrified Forest, which was another great place for our whole family -- nice wide, easy, pretty trail for us all to hike, plus petrified trees for Seymour and I to get nostalgic over (we got engaged in Arizona's Painted Desert) and lecture about, and for the kids to climb on. The gift shop  was full of resources for science-minded families, including bins and bins of different tumbled rock varieties, which Leo could run his fingers through all day while we hovered and supervised; a decent coprolite selection, which made the girls laugh; and several dozen ammonites, which let Mali bust out her Dinosaur Train facts.


So,  yay, full-family success. As per usual, we tried to maximize our chances by going during the cold season (though the weather was warm and the skies blue), and near the end of the day, so as to avoid crowds.

Keep in mind that both destinations are smaller-scale in both size and features. We could have happily spent hours at either location, but were able to see all the key attractions in less than fifteen minutes -- so if Leo had had a meltdown and we'd needed to leave quickly, we wouldn't have felt cheated of time or money. As for that last item: both attractions have entrance fees, and neither is cheap ($10/adult, $6/kids under twelve, $0/kids under six), but since they worked so well for our family, we felt they were worth it.

2.25.2010

A very hard day at the end of a string of very hard days

It's been a while since I did a straight barf-style download. Blarghagahgh:

Today was a very hard day at the end of a string of very hard days. Just so tired. Literally no break for too long, except occasional 10 minutes of bath reading in the AM. I don't like living this way. It compromises parenting skills and patience, and is not ideal for anyone, no matter how many other people have it worse or harder or more intense.

Anyhow. It's been several weeks of child illness, therapist illness, partner traveling, and a full eleven days of Leelo out of school with a mom who needs to work at least part of every morning and has not had a break during the day for weeks. That latter isn't really fair to Leo, but I had to decide whether it would be better for my son if I was distracted by work or too sleep-deprived to supervise him safely, because if I don't work all morning that means I'm working far past bedtime. I must really be getting old, as I tend to err on the side of sleep more frequently. Leo did a lot of fantastic puzzling and spontaneous drawing (usually with chalk on easel) while waiting for me to finish my damn work shifts (which are going to be shorter starting next week thanks to my awesome awesome boss). Working with him at home is doable, but guilt-wracked.

And Wednesdays are always grueling, six straight hours of child errand running and hauling, though the payoff is Costco pizza for dinner so we are always motivated. (Except Leo who has been having a PB and J for dinner for six years and doesn't seem to mind.)

The day started off well -- Leo went to school! -- and then a friend called to let me know how crappily the district budget crisis meeting at her son's school went (that would be at Leo's resented former kinder site, get a copy of My Baby Rides the Short Bus for the formal rant). She said that a parent stood up and asked why all special ed kids couldn't be institutionalized, so that "regular" kids could still have their music and dance classes. Reader, I burst into tears. And then I tweeted the hell out of this SpedPro article citing my friend Lea's guest post on the Cost/Benefits of Special Education. I think Jocelyn Sloan's reaction said it best: "I pay the same taxes [that woman] does. Therefore I expect the same benefit: educated children." I also think that original woman is a total asshole. Please forward the SpedPro article to as many people as you can, to help them understand that kids with special needs do not steal education funds from regular ed kids! Or print the article out and nail it to foreheads that are particularly thick. Your choice.

Later I traveled to Leo's school for a Leo team meeting. We (Supervisor M, E, and Sage, Leo's dear dear speech therapist) are worried that our boy is not getting sufficiently rigorous learning at home or at school, and is not going to meet most of his IEP goals. (Though we may have set them too high to begin with, as he was on such a radiant arc during IEP April 2009). I am going to talk with his school staff about accountability and progress reports, Supervisor E and M are going to help me and Therapist V set up core home "learning" centers both in Leo's room and downstairs to supplement IEP goals. Yes the goals are the school's responsibility, but I want Leo to learn them regardless of who does the teaching. There's no room for petty or finger-pointing when it comes to my son's education.

Leo's behavioral psychiatrist then called. He wants to increase his Risperdol dosage, adding in another .5 mg right before he goes to school for 1.5 mg/day total. We think his agitation at school has less to do with medication, and more to do with the aides rotating through every 10 weeks and never really getting to know him, not really, but hey -- we've been wondering about upping that dosage anyhow. If it helps, and his aggression and sleep patterns stabilize (he was up tantrumming on Seymour's shift until around 10 tonight) yet his OCD stims persist to an interfering-with-instruction degree, then we will consider adding in anti-anxiety meds Zoloft or Luvox.

Picking up and dropping off of various trumpet-playing and jazz-dancing sisters commenced. Leo was a good sport through various interstitial errands, but was not in the mood to wait for Mali to get out of her dance class, and got quite aggressive as the girls and I walked with him from the studio to the car. Could we chance Costco? We've had a couple of really bad times at Costco. Iz pleaded with me not to go, said she didn't want to risk me getting upset. Which was so sweet of her.

I reassured Iz that we would be fine, that we would leave if anything went wrong. That Leelo hasn't had a bad time as Costco in months. And it was fine until we exited and started walking towards the car and the girls couldn't break their cycle of completely and utterly stereotypical sibling bickering and yelling. It was maddening, both to me and Leo.

Maddening especially as I had just been talking with Iz about sticky interactions with peers, in trying to take her ego out of the equation, in asking people "what makes you think that?" instead of striking out or judging. In reverting to her comic book Buddha's strategy of "I don't accept your angry words, you can keep them" when absolutely necessary. But she can't not react to Mali. She can't.

And I realized that I can't control my children, I can only control how I react to them, and how I model for them. So after five minutes of the girls refusing to stop despite pleas and threats and reassurances that not reacting to your antagonizer really does work, and as Leo's agitation increased and he kept hitting and pushing me, I disengaged. I told them I would give them a demonstration of how effective not reacting can be.

We loaded up the car. I turned on our local classical music station, and I didn't speak to them or react to Leo's pushing and hitting me for the next 20 minutes, not until we arrived home.

Leo stopped fairly quickly. He needs a steady supply of reaction fuel. Iz wailed, then wilted, then went back to reading the copy of Anne Frank's Diary that she'd swiped from Susan.

It took Mali longer, because she has the tenacity and craftiness of an oft-ignored third child. First she announced to Iz that I wasn't speaking to them because I didn't like them, even though I'd assured her moments before that I always love my children even when I don't like the way they're behaving. Then she asked me the kind of deep, complicated questions that usually keep me talking for hours, this time, "Mommy, what is a god and why did the Ewoks think C-3PO was one?" But eventually she turned back to her book.

By the time we pulled onto our street and as we crested the summit of our hill, with its truly glorious view of the San Andreas fault's valley and the rain cloud-kissed Santa Cruz mountains behind, Delibes' Lakme: Flower Duet was playing and the car was otherwise silent. For a few minutes. For a few inhalations.

And then we walked in the front door and chaos resumed. I would be okay with taking a small break from it in the near future.

2.22.2010

VA State Delegate Bob Marshall Calls Children With Special Needs "God's Punishment"

According to Bob Marshall of Virginia, kids like my son are a punishment for women who chose to abort previous pregnancies (something I actually chose NOT to do, ooh irony).

From Newsleader.com:
"State Delegate Bob Marshall of Manassas says disabled children are God's punishment to women who have aborted their first pregnancy.

"He made that statement Thursday at a press conference to oppose state funding for Planned Parenthood.

"'The number of children who are born subsequent to a first abortion with handicaps has increased dramatically. Why? Because when you abort the first born of any, nature takes its vengeance on the subsequent children,' said Marshall, a Republican."
He goes on to quote the Old Testament as justification for his deplorable statements. I'm no Bible scholar, but have always been under the impression that, for Christians, Jesus' words trump those of his predecessors. And Jesus says:
"And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind?

"Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him."

John 9:2–3
If you are a person of intelligence and compassion and think Bob Marshall could use a smack upside the head a reminder that when he says such things, he is acting in a way that brings shame to his professed Lord and Savior, feel free to contact him.

And yes, I know he has since made an attempt to apologize. I don't buy it.

This post has also been syndicated on BlogHer.

Blood Typical

Leelo's fasting blood test came back negative, came back normal. So Risperdol isn't affecting his blood sugar or cholesterol levels to a problematic degree. That's good.

Still, the Risperdol isn't as effective as it used to be, with regards to self-control, aggression (self- and outward-directed), and maintaining a reasonable sleep cycle for his age. And his OCD-like behaviors (stomping, banging windows, doors; slamming toilet seats repetitively) remain on constant slow boil. Those are potentially manageable, behaviorally, with constant blocking and redirection so he doesn't get the reinforcing "high" of compulsion completion -- but the blocking and redirection not only require hypervigilance and proximity, but mean I'd be constantly pissing off a strong little boy who already deals with a hell of a lot more frustration than any kid should.

Supervisor M is going to talk about the OCD and meds possibility with Leelo's psychiatrist. We will discuss the matter at his team meeting on Wednesday.

I just want Leo to be happy in his skin, to have free and total access to the joy that sent him bounding across the field during Iz's recent soccer game* (the players were elsewhere; closing in on and stealthily throwing elbows near the goal). It wouldn't be worth the trade off to sedate him, or change his personality. But he's going to get bigger; the pounding and slamming is annoying now, but it could get destructive.

We will reach a decision in the next two weeks.

In the meantime, please send wishes for good health to Jennyalice, who is battling increasingly brutal pneumonia.

----
*Seymour is out of town at the opening of his brother's new restaurant (so exciting!); I think Leo's exuberance helped the other soccer parents figure out why I do not usually attend Iz's games.

2.18.2010

"I Believe That the Only True Disability Is a Spirit That's Been Crushed."

An inspiring TED talk, in which Aimee Mullins deconstructs the term 'disability,' and underscores the opportunities adversity can bring us:



On prognosis and potential: "There is a difference between the medical condition, and what someone might do with it"

"All you need is one person to show you the epiphany of your own power, and you're off."

It's 22 minutes long, but well worth watching to the end.

2.16.2010

From Outrage to Activism

I have a new post up on BlogHer, titled Autism: From Outrage to Activism. Here's an excerpt:

"...imagine a kid like my Leo, with autism, at school, but without Leo's educational supports and accommodations. What do you think would happen to that child? In the case of Zakh Price, an eleven-year-old from Arkansas, the answer is charges of felony battery."

If case's like Zakh's make you itch to do something, I also list actions you can take -- from major to minor. Do add anything I've missed.

2.14.2010

Explaining the Israeli-Palestinian Conflict to an Eleven-Year-Old

Iz recently read and loved Naomi Shihab Nye's lyrical, thought-provoking novel Habibi, in which "a 14-year-old Arab-American girl moves to Jerusalem and falls in love with a Jewish boy -- challenging her family, culture, and tradition." Iz fell for the book's language (the author is a poet) and ruminations (it nudged her even closer to vegetarianism) and knew that the story's location was real, but she was still surprised when I told her that the book's Israeli - Palestinian conflict elements were reality-based. She then wanted to know more about how Israelis and Palestinians continue to live alongside each other yet have never truly coexisted. As I did not feel qualified to do the topic justice, a plea went out to the Internet.

And did the Internet ever respond! First Elise Butowsky sent a link to the Council on Foreign Relations' Israeli - Palestinian Conflict timeline, and then Naomi Zikmund-Fisher wrote a lengthy essay on the Israeli - Palestinian conflict just for Iz, custom-tailored with touchpoints to engage our eleven-year-old. After I recovered from my shock over Naomi's generosity, I handed the essay to Iz, who gobbled it up, rewound, gobbled, rewound, and gobbled again.

Since Iz's reaction was so positive, and since I know I'm not the only parent who appreciates having this kind of summary on hand, I asked for and received permission to republish Naomi's essay. I hope you find it useful. If you have anything else to add -- Naomi intentionally skipped some matters -- please be respectful, and do so in the name of information sharing and dialogue.


Dear Isobel -

OK, so, the first thing you need to understand is that there aren't just two points of view on this.  There are probably 100, and so anything I try to explain about it will probably be offensive to someone or other.  You also need to know that I'm coming at it as a Jewish American who was raised in the 70s when Jewish support for Israel was something that was just expected and you weren't supposed to ask too many questions. I've learned a lot since then, and I certainly can describe other points of view, but everyone comes at this problem with their own background, so that's mine.

The second thing you need to understand is that Jews and Palestinians have been living on and arguing over this land for thousands of years. Literally. You know in the Bible when they talk about the Philistines? That's the Palestinians, or at least their ancestors.

To understand how we got where we are, it might be useful to think about a time you had an argument or saw two people have an argument about who got to sit in a particular seat. Kids at my school do this a lot, and they always have a good reason why they should be the one who gets the seat: "I was there first," "You got up," "There's no saving seats," "The teacher promised me I could sit here," "You always get to sit there, it's not fair." Sometimes (not too often) this gets to the point where the teacher sends the kids to see me (I'm the Principal). When the kids explain the problem to me, I always notice that each kid starts the story from when they were sitting in the seat, even if that's not the "beginning" according to the other kid. That's how it is with the Israeli/Palestinian conflict -- both sides have reasons why the land should be theirs, and both tend to start the story from a point that makes their side look better.

I'm not going to try to go through thousands of years of history with you, so lets start in 1900. This is totally random. In 1900 the land in question was part of the Ottoman Empire, which is essentially what is now Turkey and all the land they owned. There were Jews and Palestinians living there, as well as some other groups. At that point, there were more Palestinians than Jews by quite a bit.

In the early 1900s, more and more Jews started coming to Palestine (that's what it was called then). They were coming mostly from Eastern Europe where there was a fair amount of violence against Jews. Part of the Jewish religion includes the idea of that area being promised to the Jews by God, and every year at Passover we say that next year we'll be in Jerusalem, so when things got bad in Europe it seemed like a good idea to go there. The Ottoman's gave over control to the British, and before World War II Palestine was still mostly Palestinian, but there were more and more Jews coming and they had taken up the idea that they could have their own country there -- this idea is called Zionism.

After World War II, when millions of Jews were murdered in Europe, it became kind of obvious to the world that no one really wanted to be in charge of the Jews.  During the war no country wanted to take them all in.  So the Zionists thought this was a good time to push the issue, and in 1947 the United Nations came up with a plan called "the partition" that split up Palestine into two countries, one for Jews and one for Palestinians, based on which group was bigger in each part of the area.  It was a messy plan -- the different parts didn't connect to each other.  Also, Jerusalem was really important to both groups so the UN decided it would be in charge of Jerusalem and it would be neutral.  This plan was going to require lots of people to move -- if you were Palestinian and happened to be in a majority Jewish area you probably didn't want to stay, and vice versa.

In 1948, the day before the partition was to go into effect, the Jews declared their portion independent of Britain (no surprise) and said they were going to call it Israel (big surprise).  Calling it Israel was a big statement that this was going to be THEIR land, because that's a name that comes solely from the Jewish religion.  On the day the partition was to go into effect, Egypt, Iraq, Syria, Jordan, Lebanon and Libya all declared war on Israel, essentially coming in on the side of the Palestinians to say that they did not want Israel to exist.  When the war ended, the boundaries of Israel looked a lot like they do today, and most Palestinians had either been forced out of their homes or chosen to go live in the West Bank or the Gaza Strip.Jerusalem was divided right down the middle, with the western part of the city, which was newer, belonging to Israel and the eastern part which has both the Jewish and the Muslim holy sites belonging to Jordan.  The Palestinian state didn't exist.

Over time, the Palestinian refugee camps became more like cities and less like camps, and of course there were already cities in the same areas.  In 1956 there was another war between the Arab countries and Israel.  In 1967, there was clearly about to be another war.  Israel decided to make the first move and bombed the Egyptian airforce while the planes were still on the runway, basically knocking out the whole airforce.  The war lasted 6 days, and when it was over Israel was occupying the west bank and Gaza strip, as well as the entire Sinai desert.  From the Jewish point of view this was great -- they had more land and they had all of Jerusalem.  From the Palestinian point of view, this was horrible.  They had been forced off their land back in 1948, there had been 3 wars to try to get them back in and now not only were they not in their homes, but the Israelis were in charge of them.

There was yet another war in 1973 which Israel almost lost before the United States sent them a lot of weapons.  Meanwhile, a group called the Palestinian Liberation Organization (PLO) had formed in the west bank.  The leader was Yassir Arafat, and they were the first well known terrorist organization.  Their goal was to scare Israelis by bombing businesses, hotels, busses, etc. in hopes that the Israeli people would pressure the government to move out of the West Bank and Gaza.  Israel responded by cracking down on the Palestinians pretty hard, and it was illegal in Israel to speak to any member of the PLO.

Meanwhile, Israel had started building "settlements" in the occupied territories.  These were essentially housing developments, neighborhoods or entire cities.  A lot of the people who moved there were super-religious Jews who believe that God wants Jews to have the land, and they are there to take it.  Israel also started building on the edge of east Jerusalem, to the point where now "Jerusalem" is immensely huge and extends much father into the west bank than it used to.

In 1978, Egypt and Israel negotiated a peace treaty (technically they had been at war this entire time!).  The heads of both countries came to the US to Camp David where President Jimmy Carter helped them work out a deal.  In exchange for peace, the Israelis gave Egypt back the Sinai desert.  In the late 1980's, the Palestinians began rising up against the Israelis in the occupied territories (this is called the first intifadah, which means "uprising").  They would refuse to obey the soldiers and throw large rocks at them.  The soldiers sometimes responded by shooting at the rock throwers, and you can imagine that this made things much worse.

In the early 1990s, through unofficial channels, some Israelis started negotiating with the PLO.  Eventually, this led to what was known as the Oslo accords (because they were signed in Oslo, Norway).  This deal included a lot of different steps that were supposed to happen over a period of time.  Israel would start to pull out of the territories and the Palestinians would swear off terrorism and start their own government, called the Palestinian Authority (PA).  The PA got its own parliament, president, prime minister and police force.  Yassir Arafat was president.  The accords agreed on everything that would happen to create two different countries except for who would get Jerusalem -- that was supposed to be decided at the end of the process.

This was really controversial.  Lots of Israelis didn't like it because they thought it would be dangerous to have the Palestinians with an army right next door, and some thought they were entitled to the territories.  Lots of Palestinians didn't like it because they weren't going to get to go back to the parts of the land they came from.  As the accords started to go into effect, terrorism in Israel by Palestinians and in the PA by Jews went way up.  Every time there was an attack in Israel, the Israeli government would say to the PA, "Look, if you can't control your people then we're not going to do our part of the deal," which of course was exactly what the terrorists wanted.  Eventually, the deal just completely fell apart, leaving the PA with its own government but still occupied by the Israelis.

In the course of all this, however, the Israeli government did remove all the settlers from the Gaza Strip (they actually had to carry people out of their houses).  In about 2000, a second intifadah began.  Meanwhile, although there hadn't been any big wars for a while, and although Jordan had actually signed a peace deal with Israel, lots and lots of pro-Palestinian terrorist groups took up residence in southern Lebanon and in Gaza, as well as in the west bank.  From time to time they would launch rockets into Israel at the people who lived just over the border.

In 2004, Yassir Arafat died, and a man named Mahmoud Abbas became president of the PA.  Abbas was from the same political party, "Fatah," as Arafat, and Arafat had pretty much picked him.  Soon after, the PA held elections and elected a parliament that was mostly from Hamas, an ultra-anti-Israeli and pro-terrorism organization based in Gaza.  Fatah did not want to share the government with Hamas, and a civil war broke out in the PA.  When it was over, Hamas was in charge in Gaza and Fatah was in charge in the west bank.  The world wanted to create a situation where the people in Gaza would not want Hamas as the government, so they blockaded supplies (food, medicine) from going in and out of Gaza, and Israel sealed the border.

Now Gaza is terribly poor and the people there are really angry at Israel and the rest of the governments causing the problem.  Hamas is stronger than ever because people feel that if this is how they're going to be treated, they need to have Hamas to protect them.

In the last few years, there have been two wars.  One was in Gaza between Israel and Hamas, after Hamas kidnapped Israeli soldiers (one of them is still being held in Gaza).  The other was between Israel and Hezbollah, a pro-Palestinian organization in southern Lebanon that was bombing northern Israel.

Israel has started building a fence to seal off the West Bank from Israel, but lots and lots of Palestinians make their living working in Israel.  Israel also continues to build new settlements in the West Bank.

So that's the story of the last 100 years or so, and it makes you wonder who the good guys are.  Both sides have reasons for what they are doing that seem totally right, but the situation is totally wrong, and no one will compromise one little bit.  It's like both of them are sitting there with half their tushes on the seat, hoping the other one will give up.

I hope this helps you understand some of what you've been reading about.  If you have any other questions I'm happy to try to answer them.

Thanks!

Naomi

School and Community Crisis Consultation Services
http://www.SchoolCrisisConsultant.com

Monday Morning Crisis Quarterback
http://schoolcrisisconsultant.blogspot.com

2.11.2010

I'm So Proud That My Five-Year-Old Can Read and Write Independently!


I'm just beaming, I tell you. Beaming.

2.08.2010

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:

India the Five Year Old Glee Fan

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.

2.04.2010

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.

2.02.2010

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.

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