Pondering the Neurodiversity Movement

"I am not a puzzle, I am a person" is a salon article by Elizabeth Svoboda with this preface: People with autism don't need to be "cured," argues the burgeoning "autism culture" movement. Not all parents or medical experts agree.

This fascinating article was forwarded to me by my friend and personal autism-issue clipping service (Thanks, Mr. D!). It's about the "neurodiversity" movement - and I'm not sure what my opinion is on the idea that society needs to learn to adapt to people on the autism spectrum, not the other way around.

I am quite concerned about the "ABA-bashing" aspect of this movement. Individual ABA therapy, a type of behavior therapy commonly used for people with autism, jump started Sayer's ability to talk, and instilled in him vital self-sufficiency skills. Both his language and self-help abilities are essential to who he is today - although he STILL would have you believe he needs help putting on his socks. And I think that the "aversive" techniques originally used in this therapy, decades ago, are rare today.

On the other hand, any movement that disparages Jenny McCarthy has some merit, in my book. From the article:

Jenny McCarthy can go jump off a cliff. While the Hollywood comedian's claims that childhood shots cause autism may be well-intentioned, Ne'eman says, her message has a pernicious and probably untrue implication: If we stopped giving kids "toxic" vaccines, autism wouldn't exist. Not only does this message distract from pragmatic efforts to get autistic kids the social support they need, it implies that autistic children are inherently less valuable than their normal counterparts. "The cure paradigm sends a message that there is somehow a normal person under the autistic person, and that's a significant denial of who we are.

But yet - people like Sayer do need to fit into the world as it is and not endanger themselves or others. And to disparage therapies is like throwing the baby out with the bathwater. Please share your views on the idea of neurodiversity, and this article.

Cooties: How quickly we remember?

Can I Sit With You? - The Stormy Social Seas of the Schoolyard is an interesting if at times heart wrenching web site that solicits and prints stories written by "grown-ups" about being left out, bullied and otherwise marginalized in their childhood. Here is the mission of this site in the organizers' own words:

Mission Statement

Can I Sit With You?

Could more stress be crammed into fewer words? Though to some people this phrase means merely, “Yay, new friends,” to a lot of us it means instant school anxiety flashbacks. And possibly an intense need to crawl into a hole, or vomit.

Dealing with the other kids at school was complicated even if you didn’t have a label. For those of us who were socially awkward, culturally juxtaposed, same-sex attracted, gender-cocooned, income-challenged, “weird” sibling-saddled, differently abled, atypical looking, religiously isolated, on the autism spectrum, or who somehow just didn’t fit in, it could be brutal. Even though most of us eventually developed coping strategies, grew up, left school behind, and tried not to think about how much that time in our life sucked.

Until some of us starting having our own kids. And saw those kids start to flounder, saw them start fretting about how to fit in. Aiigh! What to do?

Well, we don’t know what most people would do, but we’ve decided to take action. We want to help our kids. We want to give them some ammunition, or at least some mental armor. We want to show them that almost everyone has been mystified or terrorized by the schoolyard social scene, though for different reasons and in different ways. We want them to see that their angst is both universal and timeless. We want them to know that other people totally understand.

________

The purpose of the Can Sit With You is two-fold: To provide a forum for folks to write about their school experiences as described above, and to raise funds for SEPTAR, the Special Education Parent Teacher Association for Redwood City. The site publishes and sells compilations of these stories, and when web site readers click on ads or buys recommended books, SEPTAR earns money.

A look around the SEPTAR site shows what amazing things a group of parents of kids in special ed can accomplish. It inspires/intimidates/brings out the green-eyed monster for those of us involved with local groups whose activities and accomplishments are more modest. I truly commend the parents in this group, and it is always good to see what other Special Ed PTAs out there are doing.

So, kudos to this Redwood City group,and maybe we can all click on an ad or two to support them. And if you would like to submit your own school story, check out the Can I Sit With You? submission guidelines.

Finally, I'm interested to know how the Can I Sit With You? stories resonate with you. Please share.

Inclusion - it's not just for kids....

My last post, Can there be perils to over inclusion??, talked about inclusion and exclusion of our kids with special needs. But, it's not just our kids but also us who experience inclusion or exclusion among peers.

As other moms take for granted the accomplishment's of their children, we marvel at the small, often unnoticed strides of our own. When our kids "lose it" we never know if we will receive understanding glances and an offer to help, or disapproving stares. Often, we can feel on the side lines and on the margins.

The author of the blog wrongshoes.com - a mother with Asperger's syndrome writes about feeling on the outside of a group of moms in Open letter to the chatty moms at the gymastics class. I found it a wonderfully written snap shot, and I imagine we have all been there at one time or another - perhaps over and over!

I know that for me,sometimes I find comfort and "normalcy" when I spend time with parents of "ye 'ole typical kids," while at other times I feel like an impostor. For example, last night I went to a parent meeting for Jacob's high school magnet program, directly from dealing with a tantrum of Sayer's. Partly it was a relief to debate the merits of science internships versus engineering summer college programs, but I also felt somewhat detached. Part of me just wanted a martini, to be honest. Luckily, I had one after with a fellow magnet mom (brilliant idea "DW"!).

I guess I'm still dealing with that feeling of bifurcation I talked about in my Why does everything have to be so bifurcated?? post last May. Wow, that was like, six months ago, and I still haven't resolved my ambivalence! Why is it that definitive answers came so much easier when we were in our twenties and thirties?

Feeling included? Excluded? Please share all.

See my heels? I AM a working mother

This year, we have decided to try enrolling Sayer in after school care run by our school district, rather than private care givers. One important reason for this is that the husband is working from home more than he did last year. I work from home, too, writing grants among other things. So, its helpful to not have Sayer underfoot during our "working" hours.

Nervous are we putting Sayer into a care situation without a "one-one-one." The first two days "Miss Heather" was there to get him used to schedules, create visuals, give the staff some tips. While Sayer was there I worked on a grant deadline from the comfort of my home office. I didn't wear pajamas - I've never been able to work in those - but I did dress, let's say, casually.

But, when it came time to pick up Sayer I felt compelled to change into a skirt, to demonstrate that I am a BUSY WORKING MOTHER, not a slouch passing off her special needs kid. And I spruced up the next day, too. I have felt a need to say, "I am VERY BUSY WORKING ON A DEADLINE (which is true!) so need this child care, thank you very much.

Now, would I be doing this is Sayer didn't have autism? I have looked at the other parents picking up their kids; yes, some are in suits but others hardly look like they were enmeshed in corporate America. Maybe they have jobs that are informal, or also work at home. Or maybe playing mah jong - it's their prerogative.

Deep inside I know it isn't any one's business what I do when my child is in child care, as long as I pay my bill and he fits in reasonably well. But that other part of me feels a need to justify my actions. Does anyone else feel they have to "prove" they are worthy of services and treatment that others without "special" kids do not? Is it part of the 'ole "mommy wars" thing? Do you think that being a stay-at-home mom is more "virtuous" when you have a child who has disabilities??

Sayer doesn't go to child care on Wednesdays, but he will on Thursday. That day I actually DO have a meeting in Portland. When I get home, I won't change into a shorts and t-shirt; I plan to wait until after I get Sayer. I know I can't keep this up - for one thing I'll run out of clothes. Any ideas to help me "snap out of it"?

Society Standards of Normal: Listen to the Music Within

Can a person be arrested for being “ugly?” According to the movie Music Within, this could and did happen in 1971 when there were “ugly laws” in about 20 other cities which stated that a person could be asked to leave a public place if they were deemed “too ugly.”

I have not seen Music Within yet but a reader, P, recommended it as a great story of how the Americans with Disabilities Act was created and passed. According to P, “In the movie, and in real life, a man with cerebral palsy wanting to order a pancake breakfast in honor of his birthday was asked with his friend, a man with hearing impairment, to leave and both were put in jail overnight. The movie has great music of the 70s and lots of humor. If you check it out be sure to listen to the real Richard Pimental speak in the special features section.” The movie is available on Netflix, and the Richard Pimental character is played by Ron Livingston (the office drone star in the cult classic Office Space).

The whole idea of being arrested for being “ugly” is fascinating yet disturbing. Who defines “ugly”? Who sets and maintains society standards for “fitting in”? And do these standards vary by class, rural vs. urban or economic factors (uh oh, sociology alert!)?

In our own experience, in general we have encountered more tolerance, acceptance and welcoming among so called "working class" and "rural" folks than among so called "urban professionals." I know I feel less tense about Sayer fitting in and not being ostracized at a small-town county fair than I would at a concert at a children’s museum.

Indeed, the worst offenders I have encountered are the Portland hip parents – you know the organic baby food and hemp onsie set. One such mom at Ben & Jerry's on Hawthorne Ave. ("hippy-ville" as Jacob calls it) got downright nasty when Sayer got a bit too close to her crying toddler. And I was "right on it" - telling him it was not his job to help the boy, that is the mom or dad’s job, and so on.

In situations like that I'm not sure what to do or say. I know that families can order business cards that explain that their child has autism and briefly describes its symptoms. They can hand out these cards in public in situations like the one at Ben & Jerry’s.

But I have resisted that idea, maybe because it defines “normal” as not having autism and thus having autism as “abnormal.” I think that such a clean-cut dichotomy over-simplifies things and enables people to simply say “Oh, that explains it” without contemplating their reactions to “behaviors” or considering the value of tolerance.

On the other hand, I did meet a suburban mom recently who was purposively seeking a day care/pre-school setting that included children with disabilities so that her “typical” kids could learn to play with such children. Maybe what is celebrating diversity to one parent is exposing your child to taboo weirdness to another.

What do others think about society standards of beauty, ugliness and fitting in? Let’s start a discussion.

A Disabled Swimmer to make us proud

There was a fascinating article in the New York Times June 18th , A Disabled Swimmer's Dream, A Mother's Fight, about Kendall Bailey, a boy with autism and cerebal palsy who was almost disqualified from the American Paralympics team. The author of the article, Alan Schwarz, was on Talk of the Nation last Wednesday and talked about his experience researching and writing the article. He clearly took the time to understand this family and really "get" how important competing in Bejiing is to the boy, Bailey. He also writes beautifully about Connie Shaw, Kendall's mom, and her fierce advocacy for her boy.

The American Paralympics committee questioned whether Kendal was sufficiently physically disabled "enough" to compete in the Paralympics. Intellectual disabilities alone are not a classification for the Paralympics. Ultimately, the family appealed on a national and international level and Kendall be going to Beijing and likely setting new world records.

If you have a few minutes and don't mind if you start of get weepy (I recommend not driving!), listen to Alan Schwartz describe how important swimming is to Kendall. Here is the National Public Radio link.

Did the U.S. Paralympics committee act out of ignorance? Did they act out of malice? Discomfort about developmental disabilities? Is there an "Us" vs. "Them" vibe between the developmentally and physically disabled? I'd like to know what you, dear readers, think.

There has been a lot of talk recentlyabout how we have become a multi-racial society with blurred lines between black, brown and white. Similarly, can our society no longer have sharp lines between phsycial and intellectual disabilities? Again, what do you think?

Why does everything have to be so bifurcated??

Am I the only one that feels bifurcated - split into two? I am one person when I am on the neighborhood cul-de-sac filled with kids, parents, baseballs, scooters, bikes, motorized toy cars and lacrosse sticks, ensuring that Sayer doesn’t hurt any one by accident or have a fit. I am another person when I am at Jacob’s high school research symposium, visiting poster presentations about recycling and biodiesel; socializing with other parents and talking with teachers about potential funders for “green” school projects.

I am one person when I am at an IEP meeting advocating for Sayer’s education program, or arranging for inclusion services for his day camp. I am quite another sipping martinis with a buddy in a Portland bistro, or on the dance floor with my cousins at a family party on Long Island.

Sometimes I wonder what it would be like to sip martinis in an outdoor cafe with the neighborhood moms and dads on the cul de sac, where I would not have that veneer of hypervigilance I have when with Sayer in unstructured settings. Or what it would be like to go to OMSI with Sayer and one of Jacob’s teachers. Or go see the “Sex and the City” movie with Sayer’s teacher. Or take one of my New York cousins with me on a lecture on behavior strategies for kids on the autism spectrum.

Clearly, all these people would see completely different sides of me. in different settings and situations. But, would that be good or bad? Do these separate identifies protect us, define us, limit us or liberate us?? I'm not sure of the answer - are you?

Midlife Moms on the Margins? Hot day, Hot Links

Here we are in a one day heat wave and my ability to write insightful original material seems to be melting along with everything else. So, I'm going to brazenly copy an idea I read on another blog (but sadly don't remember and can't credit) and do a "Link Love Friday." MidlifeBloggers.com was recently started by blogger byjane, when she noticed that most women-oriented blog communities are focused on younger women, not those in midlife. Those of us who commented in agreement are now the nucleus of this group blog. The posts are interesting and fun, such as Menopause Has Stolen My Brain!, by Jan's Sushi Bar.

For a more serious look at the challenges of striving for work/life balance when your family includes members with disabilities, read babs post "Approaching equilibrium" in her Awalkabout's weblog. The comments alone with reassuring you that you are not alone. At the end of the article is a link to an article in the Seattle Post-Intelligencier about the struggles of one family affected by autism.

Finally, through that article I came across a blog for "alternative' special needs families, called My Baby Rides the Short Bus. The blog is an "information page for upcoming anthology written by parents of children with 'special needs' who identify outside of the mainstream" The authors are also compiling a resource guide and are looking for "favorite resources that help to empower us and treat us respectfully as parents/caregivers."

The My Baby Rides the Short Bus blog got me thinking about how the concepts of "mainstream" and "marginalization" are so subjective. Just the words bring back ghosts of sociology past. My family is mainstream, I guess, since we live in the burbs, are a "typical" nuclear family, and we are not poor. Mmn - but are we marginalized by definition because we have a child with special needs? And am I out of the mainstream because I am a midlife mom?

Whew - too much social analysis on a hot day. But I am curious what you readers think - are we "marginalized" or not? And is having a child with special needs enough of a link to forge friendships with parents with values and world views different from your own? Let me know what you think. I'm off to guzzle some iced tea. Have a great week-end, all.

Good Enough Mom; Good Enough Birthday Party

Sayer’s birthday is coming up and one of the first things I did after I returned home from my trip was to confirm plans for his party. So, I sat down with H, the aquatics and party coordinator at our health club. As we went over the list of logistics, it struck me how much more easygoing I am about this party than I was when my older son, Jacob, was younger.

This time, when H asked me if I wanted a pirate or sports themed table cloth, or just a color, I didn’t give much thought and said “Sayer likes red; make the table cloth and balloons red.” My next thought was “I’ll go to the dollar store and get some kind of plates with a theme – or not.” I laughed and told H that I have been planning birthday parties for 14 years and by this point, I tend to just go with the flow.

Becoming a Good Enough Party Planner is an accomplishment for me. Among Dan and Jacob, I am notorious for going overboard in party planning. Although Jacob doesn’t remember his party when he turned two, Dan has never let me live it down. We were living in Kansas City at the time, and it was late July. Late July in Kansas City is VERY hot and humid.

For reasons that escape me now, I decided to have a “treasure hunt party.”I bought plastic treasure chests and wrote each kid’s name on it. Then I got dozens, well maybe hundreds, of plastic coins and favors and hid them in the sand box. Each kid got to hunt in the sand box for the hidden treasure [OK, junk from China], and put the treasures into their personalized treasure box, which had a little key and all.

What was I thinking? For two year olds? They were probably more interested in eating sand than gathering coins. Looking back, my primary recollection is of steamy air pressing down on our porch, with me oozing with sweat and wondering “Why aren’t we inside with our air conditioning?” Don’t even ask how the ice cream cake held up.

We moved from Kansas City to the Northwest a few years later, and whenever anyone asks why I tell them that we couldn’t stand the weather – the dreadful summers and bitter cold winters. And then I add, “For example, we had this birthday party and it was like a sauna ---.” On the plus side, the boy who moved into our house probably found surprises in the sandbox for years to come.

Fast forward to today. Jacob no longer has parties, and I think the years of Sayer’s parties are dwindling – I hope so; we’re running out of ideas. Nowadays, I don’t care much about the party’s theme. I am more concerned with insuring that the needs of Sayer’s friends will be met - such as arranging locker room logistics for boys who need their mom’s help to get changed. I no longer sweat the small stuff – neither literally nor figuratively. But, I admit, I will undoubtedly go to the Dollar store for party favors. Just ONE per guest – oh, but I have to figure in siblings. Old habits do die hard!

Does anyone have any birthday party stories - horror or not -to share? I'd love to hear them. To read more about the "Good Enough Mother" idea, check out the web site Rene Syler, of Good Morning America: Good Enough Mother: A refuge for the perfectly imperfect mother. Rene has also written a book, Good Enough Mother: The perfectly imperfect book of parenting. I've seen it at the library but haven't read it. I guess that makes me a perfectly imperfect blogger.

Our Own Private Bell Curve

Adaptive skills. Reading skills. Vocabulary. Math skills. Grasp of language concepts. Social skills. Conversational skills. Sensory profile. Auditory processing. Vision. Articulation.

Yesterday was Sayer’s 3-year evaluation to determine continued eligibility for special education services. He passed! The meeting went fine and his team gave some promising information about his progress, but it is always deflating to see your child’s scores on the low end of the bell curve.

How nice it would be to have an assessment that would place your child firmly on the right side of the bell curve – moderately high to high. I decided that such an assessment will exist if I create it. So here is the 16 item Sayer Andrew Capability Assessment:
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SAYER ANDREW CAPABILITY ASSESSMENT

Skill Items That Can Be Accomplished Always/Usually (3 points each)

Can walk three miles on a dirt path without stopping

Can hike seven miles with periodic rests and snacks

Will eat food prepared on a camp stove

Can climb ladder and go down water slide ten consecutive times

Can shop at Costco without having a meltdown in store

Can remember which street light in the neighborhood is missing a light bulb

Can hula hoop for at least two minutes

Can find print icon on any computer and use repeatedly

Knows exactly where to find Baby Einstein videos at public library

Knows when his shirt is slightly wet right before the bus comes in the morning

Can identify that a crying baby is sad

Can play Wii bowling

Can set the table using “I can set the table” place mats


Skills that can be accomplished Sometimes (2 points each)



Shop at Costco and not have a meltdown after leaving store

Use walking feet at swimming pool

Keep hands away from a crying baby

Sayer’s Raw Score: 45
Sayer score is in the 90-95% percentile
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I invite all of you to create an assessment suited to your own child’s unique skills and abilities. It would be great to share them – maybe we can start a Capability Assessment Database!

They say I don't pay attention but I said "No, no, no!"

I have a dear friend I'll call "K" who is a 50-something physician and mother to two teenage boys. Ever busy, K nonetheless prides herself on being hip and keeping up with the latest music and fashion. K recently discovered Amy Winehouse, a young "white soul" singer from England with a smash album, Back to Black, with one of K's favorite songs - Rehab , with the chorus "They said I had to go to rehab but I said no, no no."

The other day K dashed into Borders to buy Winehouse's latest CD, on her way to an hour's drive on the freeway. She went to the Amy Winehouse section, grabbed a CD that listed Rehab as its first song, got on the freeway and popped her CD into her car player. She heard the familiar Rehab introduction and waited eagerly to sing at the top of her lungs. And waited. And waited for words that never came. That's when K looked more closely at her CD and realized she had bought the "Smooth Jazz Tribute to Amy Winehouse." Words - not gonna happen.

K told me this story and played her CD for me. True disclosure: I am not a smooth jazz affection ado. After I stopped doubling over in laughter, our conversation went like this: "I can't believe they put the Smooth Jazz tribute CD in the Amy Winehouse section not the jazz section." "Yes, that is like putting the 'Kidz Bop sings the Beatles CD' in the Beatles section not the children's section." "I should go back to borders and tell them that, but I'm too embarrassed." "Don't be embarrassed, just do it." "But, really, I can't believe they put it in the Amy Winehouse section."

K is like most of us, too busy doing too many things to pay full attention to one thing at a time. We get embarrassed and hesitate to share our goofs with those outside our close circle, which is why I suspect this kind of thing happens to folks in midlife more than we know. My suspicions are confirmed by Chathryn Jakobson Ramin, author of Carved in Sand: When Attention Fails and Memory Fades in Midlife. This fascinating book, written in a fun-to-read style, explores the role of neurology, biology and stress in midlife forgetfulness and diminished attention. The book details the author's various interventions to combat her own "spaciness" and offers suggestions for improving your memory and focus. Ramin also takes a riveting and at times hearbreaking look at the factors that can contribute to Alzheimer's, along with current research aimed at warding off its effects.

Cathryn Jakobson Ramin's web site has some good information on midlife memory and attentionissues, including quizzes on how your particular brain works. This ABC News link has a chapter excerpt. I've listed an Amazon link for the book in my sidebar. If you don't have time to read, it is available as an audio book. For locals, you can try to find it at the Camas Public Library, where I got my copy. Now, if I can just remember to return it.....

Motherhood: Fact vs. Fantasy

Nobody said it was easy.
No one ever said it would be so hard

Coldplay, “The Scientist”

On February 28th I caught a National Public Radio show, “World Have Your Say,” a call-in show produced by the BBC. The topic was “Does your society gives you an idyllic version of what motherhood will be and if that is the case, is there a taboo about women speaking out honestly about the downside of being a parent?" The show was a follow-up to a Women’s Hour radio show on BBC that morning that elicited literally thousands of calls and e-mails that “opened a Pandora’s box of maternal ambivalence.” These moms admitted that although they love their children their often find mothering boring, exhausting and lonely but find that speaking out about their reservations was “not done.”

The show featured a panel of women from various parts of the world who talked about their motherhood challenges, and the importance of family and friendship support networks to find relief from non-stop parenting. Moms and dads called in from around the world to say that parenting is more isolating and difficult than they imagined, but they were reluctant to admit that to others. Two bloggers from the United States were also called and they gave some great examples of the pressures women in the United States feel to comply with “perfect mother” expectations. One mom gave the example of the attachment parenting movement and how it creates onerous expectations for mothers – to carry their children constantly and to shun the use of lifesavers [in my mind anyway] such as strollers and cribs.

Let’s say that Mothers of special needs children constitute their own country. If the BBC gent called me as a spokeswoman I certainly would have boatloads to say!! I think that parents of children with disabilities are expected to be saints of sorts. We may be a bit more off the hook for raising academic or sports superstars, but we have share the expectation that we should always but our children first.

I think we also feel unique pressure, especially when our children are young, to involve our children in a whirlwind of therapies and interventions. We don’t’ often even get the luxury of complaining that our children are watching too much TV or are on the computer too much. Instead they are being shuttled to therapies or engaged in play therapy at home.

Expectations in our “special needs country” are also different because society posits that we – as mothers or fathers - must be special since we are parenting such special children. I have heard more than once that Sayer was meant to be my child because I am so well-equipped to be his mother. Well, I always appreciate positive feed-back on my parenting but Jeez, that does create a bit of pressure, don'tcha think? ”

We all have our rough days and our rough moments and it is helpful to admit this and talk about these times to others. We should not feel we must hide any evidence that we fall short of society’s ideals of special needs mothering.


To listen to the Podcast (audio copy) of the World Have Your Say Show click on this link: Listen to the Interview Be patient with the link -- it takes a few minutes to connect to the Podcast.

This is the World Have Your Say podcast home page

There are the bloggers that participated in the show:
Motherhood Uncensored
Bad Mother Chronicles