bouncy party
May 31, 2009
seems to be the theme this week with my postings. all of the other parents get to drop off their children at birthday parties. i can do that with my daughter. but i haven’t been able to do that with my son, not because he won’t let me leave but because i’m never sure how he will behave. will that day ever come?
he did well though. he did pester his sister and his friends a lot. but he didn’t get physicall agressive with anyone which can sometimes happen during activities like bouncing in a bouncer. if someone bumps into him, he might have to bump them back, etc. he even sat next to his friends instead of having to sit next to his sister. that is a big step. although he had to ask what his sister wanted when he needed to choose what kind of pizza he wanted.
a new desk
May 30, 2009
my daughter got a new desk for her room last weekend. so my son decided he needed a desk in his room too. he and my husband were out ALL DAY searching for a desk. my son was apparently very particular about which desk would work best in his room.
once the desk arrived at home, my son was very focused on getting it all put together exactly right. he did some of the hammering which he enjoyed. and it was really neat to see him clearing some things out of his room and organizing the things in his desk. he has some very particular ideas. but it was fun to see him taking on this responsibility of his things.
never a weekend away
May 29, 2009
We were at a party last night that was a fundraiser for the school - something you buy tickets for at the auction - and a party just for the parents of the 1st grade - which is my son’s grade. Some of the mom’s were talking about having family in town and how great it is to have a family member to take the kids for the weekend. It occurred to me that we have NEVER in 7 years had a weekend away from our kids. They seemed shocked about this. They brought up the idea of having a weekend babysitter as an auction item - to allow some parents to get away. But, for us, it isn’t just the fact that we don’t have family in town, it is also the fact that in 7 years we couldn’t leave our son with just anyone. Our family members probably included. Again, a reminder of how different it is to be a parent of the spectrum. And, again, a reminder that I need to give myself a break - I beat myself up when a few days go by when I haven’t made a great meal for the family, or when I haven’t exercised, or when I want to wear a pair of sandals but haven’t had time for a pedicure - it’s really hard and it’s even harder when you don’t have the family support, ever.
evening of entertainment
May 28, 2009
My kids had their evening of entertainment at school this evening. I enjoy watching my kids perform very much. But it is events like this that, for me, are a constant reminder of how different my situation is.
When asking the teacher “what time do you think i should arrive to get a good seat” and the teacher asking another parent who serves on the parent board, that parent responds “oh, we drop the kids in their classroom at 6:30 and just head over” it’s no big deal kind of thing (the event starts at 7). Well, when all of your children are NT (neurotypical), then it probably is not a big deal. It’s interesting how little comments like this can stir emotions in me. This parent didn’t know that I have a child on the spectrum and that that child has difficulty in these types of situations and that, for those reasons, it IS important for me to have a seat up front. It isn’t so much that I need to have a seat up front to see my kids. It is more so that if something goes wrong, I can be right there to help my son. But, it bothers me that no one else just gets this. It bothers me that parents of typical children really have no idea how hard something as simple as an event at school can be for us parents of non-typical children. And it bothers me that these parents really have no idea how much easier they have it.
Well, on to the event. After giving the nanny a hard time about getting on his costume, my husband got my son dressed and off to school and into his classroom by 6:30. Of course, my daughter dressed herself in her costume and was well prepared for the evening.
Last year, my son wouldn’t let my husband drop him off in the classroom - there were tears and fears and many anxieties, after all, it is highly unusual to be dropped off at school at night. This year, he went in and started playing games with his classmates and let my husband go.
Last year, my son never made it up to the risers where he was supposed to stand in his position. He got distracted by some electronics or lights along the walking route through the church. So he ended up standing next to the risers. This year, he walked in his line and stayed in position and made it up the risers.
Last year, my son was distracted all through the song they were performing. There was the strange thing on his head - the angel halo - as if someone had just placed it on his head for the first time. There was the strange costume he was wearing. It was actually quite comedic and everyone enjoyed his comedy (I may have written about this previously). This year, he was up there and mostly singing and did not get distracted by his costume.
HOWEVER, just as I thought “he made it through”, they all took a bow and my son and one of his classmates in front of him bonked heads during the bow. My son put his hand to his head and I could see that the bonk hurt. He started crying as everyone was walking off the risers. He made it off the risers with the help of a classmate directing him but then he ran to me crying. Just when I thought I was going to get away with an event with no incident!
They had a grand finale with all of the kids from the school on stage at once. My emotions were all over the place. On one hand, I am so proud of my son for participating and for doing such a marvelous job - to have Aspergers and to be on stage with hundreds of kids singing in front of hundreds of people! And, then I see my daughter who I am also equally proud of - but for different reasons - she is just thoroughly enjoying and embracing the whole gig - it is such a joy to have an NT child! And then I feel guilty that I’m happy she’s NT and not Aspergers. And then I feel sad that I even have to think such a thing. And then I feel mad that my son has to be in these situations that reveal his differences. And then I feel angry that people aren’t more celebratory of differences. It goes on and on.
What, for some parents, is a simple night of singing and at most dealing with the hassle of getting through traffic to get there on time, is much more for me.
“Erasing Autism” article in Newsweek
May 27, 2009
I have had many people forward this article to me in the past week. It’s good, people have a sense for where I stand on the Asperger’s side of things. I am one of those who believe that Asperger’s doesn’t need to be cured. Because I feel that people with Asperger’s have amazing minds, I wish society could adapt to them instead of them having to adapt to society. This is a great article.
http://www.newsweek.com/id/197813
Erasing Autism
Scientists are closing in on the genes linked to autism. So why is Ari Ne’eman so worried?
It’s spring in Washington, and Ari Ne’e-man, with his navy suit and leather brief-case on wheels, is in between his usual flurry of meetings. Ne’eman is a master networker, a guy you’d think was born in a campaign office and bred in the halls of the Capitol. He’s fluent in policy-speak and interacts seamlessly with high-level officials (he’s just had lunch with the acting vice chair of the Equal Employment Opportunity Commission) and inquisitive reporters alike. He’s formal but sociable and has a well-timed sense of humor. He also has a problem with velvet. I knew this about Ne’eman—he’d mentioned it when we first started talking more than a year ago—but now, in a D.C. coffee shop, he gets into the sensory details. His father used to drive a car that had fuzzy velvet-like cushioning, and it made Ne’eman crazy to sit in it. “I’d wince because I’d think about how it would feel to get that under your fingernails,” he says. I think I see him shudder at the memory.
Ari Ne’eman is 21 years old and has Asperger syndrome, a high-functioning diag-nosis on the wide-ranging autism spectrum. Ne’eman’s velvet aversion is triggered somewhere deep in his brain, a brain that he happens to relish. He doesn’t want anybody to mess with or, God forbid, cure his Asperger’s. It’s who he is, who he’s always been. It’s why he’s had ob-sessive interests since toddlerhood. At 2½, he saw a dinosaur skeleton at New York’s American Museum of Natural History and announced, “That’s a pterodactyl.” From there he fixated on baseball, reciting players’ names and stats ad nauseam, whether or not anyone was listening—a behavior experts call perseveration. Later it was constitutional law. His friend Ben DeMarzo remembers driving with Ne’eman and two other classmates one high-school weekend. DeMarzo and the others wanted to listen to music—the Beatles were a favorite—but Ne’eman had other plans. “Ari made us listen to Supreme Court oral arguments. It was brutal,” DeMarzo tells me. He was outnumbered—how’d he win? I ask. DeMarzo laughs. “Ari always wins,” he says.
He certainly puts up a fight. Ne’eman is officially studying political science at the University of Maryland, Baltimore County, but he also runs the Autistic Self-Advocacy Network, a nonprofit he founded in 2006, the year after he graduated from high school. The task he has taken on is daunting and controversial: he wants to change the way the world views autism. Autism is not a medical mystery that needs solving, he argues. It’s a disability, yes, but it’s also a different way of being, and “neurodiversity” should be accepted by society. Autistic people (he prefers this wording to “people with autism,” a term many parents use, because he considers the condition intrinsic to a person’s makeup) must be accommodated in the classroom and workplace and helped to live independently as adults—and he is pushing to make this happen for everyone on the spectrum. They should also be listened to. “We’re having a nation-al conversation about autism without the voices of people who should be at the center of that conversation,” he says.
Ne’eman’s network has local chapters in 15 states, and he works closely with organizations like the EEOC and the American Association of People With Disabilities. Neurodiversity activists see their mission as a fight for civil rights, and Ne’eman and others are willing to stir un-rest. “Ari’s very straightforward,” says Lee Grossman, head of the Autism Society of America, who supports many of Ne’eman’s efforts. “He tells it like it is from his perspective.” Ne’eman has taken on powerful organizations, specifically Autism Speaks, the largest science and advocacy group in the country, be-cause he believes they rely on fearful stereotypes and focus their research too heavily on what causes autism as opposed to improving quality of life for autistic people today. Last year he helped stop an edgy “ransom notes” ad campaign created by New York University’s Child Study Center to raise awareness about autism. One said, “We have your son” and are “driving him into a life of complete isolation.” It was signed “Asperger Syndrome.” Ne’eman was appalled. “There’s a misperception that autism is some thief in the night that takes a normal child and places an autistic child in its place,” he says. “That’s not true.”
The autism spectrum itself, however, is a universe with multiple galaxies, including nonverbal toddlers who bite themselves and college grads who can’t tell the differ-ence between sarcasm and seriousness. This complexity leads to passionate and conflicting viewpoints. Not everybody stands behind Ne’eman, and some adamantly op-pose his views. One major area of contention: scientific research, which includes the hunt for autism genes.
I knew Ne’eman had a surprising outlook on this and figured he’d have something to say about the recent news that scientists have found common gene variants that may account for up to 15 percent of all autism cases. This is big in a disorder that varies so enormously from one individual to the next. Environmental factors also play a role, but if scientists can test for specific genes—most of which have yet to be discovered—they may be able to intervene much sooner to help kids. One day they might even find a cure. This is exciting for parents who want to understand the roots of the disorder. Therapies—some helpful, some shams—vie for their attention and their pocketbooks, and they’d welcome better, more targeted treatments. But the new genetic advances concern Ne’eman. He doesn’t believe autism can be, or should be, cured. His ultimate fear is this: a prenatal test for autism, leading to “eugenic elimination.” If a test is developed one day, it will be used, he says. And that means people like him might cease to exist.
When I press Ne’eman on genetic research—doesn’t it have some merit?—he says he doesn’t oppose it outright, but he believes scientists must consider the ethical implications of their work far more carefully. Already couples are testing embryos for diseases like Huntington’s, then choosing to implant only the healthy ones. And who can blame them? But autism isn’t a fatal condition. Should people without the disorder be allowed to judge the quality of life of someone who has it? “That is a message that the world doesn’t want us here,” says Ne’eman, “and it devalues our lives.”
The prospect of no more Ari Ne’emans—whether you agree with him or not—is haunting. Termination of fetuses with Down syndrome is routine today; given the fear that autism inspires in parents, why wouldn’t it follow? And what would our world be like without autism? The vast differences among individuals on the spectrum make the notion even thornier: will parents start demanding to know whether their fetus will be low- or high-functioning? But it’s also impossible to ignore the parents who say they’d do anything to free their children from isolation and pain. Some feel so hopeless so much of the time, they do wonder in private if their children would have been better off not born. And who can blame them?
Ne’eman battles a strange kind of image problem: his critics accuse him of not really being autistic. His mother, Rina, is particularly sensitive about this. “People who see Ari today have no idea where he’s been,” she says. As a young child, Ne’eman was verbally precocious but socially challenged. “I didn’t understand the people around me, and they didn’t understand me,” he says. He was bullied and ostracized—back then he didn’t look at people; he flapped his hands and paced incessantly (he still does both today); he brought newspapers to elementary school as leisure reading. “I think the word ‘freak’ may have come up,” he says. He was, at one point, segregated from his peers in a special-ed school. That led to struggles with depression and anxiety so severe he would pick at his face until it bled. I asked Ne’eman how he manages all the professional mingling he does today. Small talk makes him uncomfortable, but he’s learned to play along. Still, none of it is easy. “You come out of a meeting and you’ve put on a mask, which involves looking people in the eye, using certain mannerisms, certain phrases,” he says. “Even if you learn to do it in a very seamless sort of way, you’re still putting on an act. It’s a very ex-hausting act.”
He remembers being taught in social-skills training that when people are happy they smile with all their teeth, and when they’re sad they wear exaggerated frowns. “I was always wondering, ‘Why is everybody around me neither happy or sad? They don’t have emotions’,” he says. When you’re autistic, social interaction can be like a foreign language: no matter how fluent you become, you’re never a native speaker. Katie Miller, a fellow activist, jokes that “Ari is the only autistic we know whose special interest and talent lies in networking.” But, she says, “it didn’t come naturally. He’s learned it the way every-body else learns algebra.” Ne’eman has a way of taming the stress he feels: he wears a tie because it puts a soothing pressure on his neck. “It’s a good way of calming my anxiety,” he says.
One of Ne’eman’s latest efforts is a new public-service announcement called “No Myths,” which he helped create with the Dan Marino Foundation, a funder of autism research. In it, Ne’eman appears in a red sweater and tie along with others on the spectrum, including a man who speaks through a communication device. “Our futures have not been stolen,” Ne’eman says. “Our lives are not tragedies.” The message is clear: We stand before you. Don’t make us go away.
“Oh, that must be why I felt off-balance yesterday… I didn’t have a balanced diet”
May 26, 2009
this is what my son said when hearing my husband say that eating fruit is part of a balanced diet!
we made ice cream and calzones today
May 25, 2009
My husband took my daughter shopping for a desk for her room. It gave me that much valued opportunity to have one-on-one time with my son. We used to have more of it. But, lately my daughter has been a momma’s girl.
My son is such a joy to hang out with when there are no other kids around, including his sister. He went downstairs to visit our 18 year old cat and he found our “camping” ice cream maker. We’ve never used it camping, as I can’t imagine toting along cream and ice! Anyway, he decided he wanted to make ice cream. Fortunately, I had all of the ingredients - otherwise, I would have had to make a run to the store - he doesn’t like to take no for an answer. We had fun filling it with ice and rock salt and mixing together the ice cream - not to mention the rolling, tossing, and shaking of the ice cream maker ball.
Suddenly, he remembered that we saw some ladies making calzones on a local PBS cooking show. These calzones looked great so I had written down the ingredients and ordered them with our groceries. He decided he wanted to make those too. Again, fortunately, the Amazon Fresh grocery delivery had arrived earlier today. We again, had the ingredients. So, he helped saute the red onions, garlic and brocoli, mixed it together in a bowl with the various cheese, and most importantly, helped me make and roll out the dough. While we were waiting for the yeast to set and the dough to rise, we even got in some homework time! My husband was so glad to find out when he got home that the homework was already done. I had asked him to make sure it got done this weekend as it was supposed to be turned in on Friday. He has never been successful getting my son to do homework. It is quite the battle.
So, anyway, we had VERY DELICIOUS brocoli calzones and vanilla ice cream with all the toppings - I wish I had time every day to make food with my son - he loves it as do I!
Washington Schools get failing grade
May 24, 2009
Our schools get a poor national report card
A sobering download of data from The Education Trust makes clear that Washington schools are mired in mediocrity, and the WASL is not helping matters
By Dick Lilly
There was a lot of wisdom — which she pointed out a couple times looked a lot like common sense — in the data Kati Haycock, president of The Education Trust, presented to the League of Education Voters in a speech at the downtown Seattle Library Monday night. It was not good news for our state.
The Education Trust is a highly respected nonprofit out of Washington, D.C., which “promotes high academic achievement for all students at all levels,” skillfully mining education’s trove of data to support its policy recommendations. Haycock was keynote speaker for an LEV event designed to thank the troops who helped pass the new basic education act, ESHB 2261, and energize them for the years of trench warfare ahead to fund and keep the promises only outlined so far.
The story Haycock tells with her PowerPoint graphs is profound. Nationally, elementary and middle school achievement is rising and the achievement gap closing — but not in Washington State. High schools: not so good anywhere. You can find it all linked from this LEV page: this LEV page or at The Education Trust web page.
Here are a few points worth keeping in mind:
1. Remedial courses (some would call them “dumbed-down”) for kids who enter high school unprepared (some might call them “at risk”) aren’t the best way to keep these kids in school, giving them a shot at graduation. Not at all. Haycock’s data show that these kids are more likely to stay in school when challenged by placement in rigorous academic classes just like everyone else. To that, the ghost of the late Mike Riley, former superintendent in Bellevue and a huge advocate of expanding use of the Advanced Placement curriculum, would whisper, “Told you so.” Haycock’s explanation: It gives them something to strive for.
This finding is a reminder of something common in education: the systemic under-valuing of kids’ intelligence. This pattern hits all kids, as every parent knows, but is worse for kids of class and color different from their teachers, as Haycock’s data demonstrated once again.
2. The National Assessment of Educational Progress (NAEP) is a better test than the WASL. That’s because the WASL lies to us. It lets us think we’re better than we are. The NAEP is administered to statistically valid populations of students all over the country and the results tell us how Washington compares nationally. It’s not pretty. For example, the WASL claims that in 2007 65 percent of African American fourth graders were proficient readers. But the 2007 NAEP results find only 20 percent met the standard of proficiency set by the federal government. The figures for white kids were 82 percent on the WASL and 41 percent on the NAEP.
Compared to other states, Washington tends to fall in the middle third of scores nationally on the NAEP tests. Problem is, with the WASL, we’re setting our own finish line. It’s as though in the 100-yard dash our children’s times were taken when they passed 80 yards. We’d have a better picture of how our kids were doing if state Schools Superintendent Randy Dorn just took the money Washington spends on the WASL and paid the Department of Education to give the NAEP to all our fourth- and eighth-grade students. That would be real WASL reform.
3. Among the current (and valid) big issues in education is the hue and cry and hope for a quality teacher in every classroom. One of Haycock’s graphs showed that Washington has a long way to go to get there. In this state, one fourth of all academic classes grades 7-12 are taught by teachers with neither a college major or certification in the subject they are teaching. That’s fourth worst in the country, ahead of only Arizona, Alaska, and Louisiana — an uncanny factoid showing again that John McCain, Sarah Palin, and Bobby Jindal have a lot in common. Not something we in Washington should want to share.
Dick Lilly served on the Seattle School Board from 2001-05 and earlier covered the Seattle Public Schools as a reporter for The Seatle Times. You can reach him in care of editor@crosscut.com.
so frustrating - do you vaccinate or not
May 23, 2009
I haven’t been getting the flu shot for myself or for my children since my son’s diagnosis. However, this year we got hit with flu big time - Influenza B and a 7-10 days of significant illness not to mention the 6 weeks longer that it took me to get rid of the cough. After that nightmare, I am definitely vaccinating myself for the flu next year. I will have my husband do the same. I’m not sure about my kids though. I was thinking I would have all of us get vaccinated except for my son to provide some household herd immunity. I’m not sure if I’ll vaccinate my daughter though. It is just so tough.
In fact, children who get the flu vaccine are more at risk for
hospitalization than their peers who do not get the vaccine, according
to new research that will be presented on May 19, at the 105th
International Conference of the American Thoracic Society in San Diego.
http://www.sciencedaily.com/releases/2009/05/090519172045.htm
We made it through another week of school
May 22, 2009
Not much more to say - less than 3 weeks left to go! I hate the idea of trying to speed time up but it is always such a relief when I finally have him dropped off at school and I get a good report card for the day when I pick him up. You have no idea unless you go through this day in and day out.
