Thursday, March 27, 2008

Kim Stagliano, you rock

I've known Kim Stagliano for awhile now. She's a writer (represented elsewhere quite ably), a contributor to the Huffington Post, and mother of three daughters. Kim has written about her life, and her family in a way that defines "laugh and cry at the same time." I still think about her post on "The Crappy Life of an Autism Mom"...usually when I'm feeling sorry for myself.

Last spring Kim invited me to attend a panel called Writers on Autism. I wasn't expecting much; I didn't know exactly what to expect in fact. I sat in the back, I had my New Yorker secretly stashed in case I got bored. Well, I wasn't bored, I was blown away, a tired cliche for what was a paradigm shifting (another cliche) experience.

Kim read her piece about what makes a good day at her house, and we all laughed along with her. Then, Rachel Kaplan who attends Hofstra University, and has autism "spoke". Using a word board device she was able to write about her life. Because she does not communicate orally, her work was read by an associate.

Listening to Rachel describe how she felt, seeing clearly how her mind was fully engaged, lively and bright, despite not speaking, and looking very "disconnected" from the world around her (as many people with autism do), it was clear there was a very bright, very sensitive young woman "in there." Hearing her 'speak' altered my sense of what autism is.

And thank god for that because not soon after, a dear friend of mine received an autism diagnosis for her beloved four year old son. When she told me, my first reaction was 'oh damn' but I knew what to say: your son is there. He might not look you in the eye, he might look disconnected, but he's there.

I have Kim Stagliano to thank for that insight.

Kim's of the funniest people I know. She's also one of those people I most admire and respect. The world got a brief glimpse of her here on Good Morning America last week.

You can read her blog here.

But mostly you can just say thanks to Kim by understanding that autism doesn't equal retarded, and it doesn't equal the end of the world. Her three "perfectly imperfect perfect" daughters are definitive proof of that.

23 comments:

Bonnie Shimko said...

I was so glad to see this post. I "know" Kim from Backspace. She's an amazing woman with an amazing family.

Welshcake said...

Thank for posting that lovely,funny, heartrending piece by Kim.

Chumplet said...

I saw that clip and I wish I'd seen it when it was live. Kim has such grace and poise, I feel like a lazy ungrateful bum in comparison.

My nephew is a bright, articulate autistic boy. His eyes flutter all over the room when he asks me the same questions over and over.

I have to be patient and answer him with accuracy and honesty. He takes everything very seriously and will remember each response for months afterward.

Sarahlynn said...

And, of course, even "retarded" isn't the end of the world (despite the usual negative associations with that term).

In fact, along with the many advances in working with individuals with autism, doctors are now realizing some important things about their patients with Down syndrome, that most commonly assumed cause of developmental delays (the preferred term, over "retarded") that casting directors reach for when they need a physically obvious developmentally disabled character.

It turns out that perhaps quite a lot of people with Down syndrome have average or above average IQ, with significant learning disabilities, and our problem is with how we look at people who are different, rather than with many of the different people themselves.

Kelley. Twizzle. Me. said...

Kim is so great. :)

Though, I think she'd probably agree it's not just kids with autism we need to not consider retarded. As a mom with a son with multiple brain lesions, we get a little lost. It'd be great for everyone to remember that sadly, lots of kids have neuro/neurobehavorial issues that aren't autistic, esp rare issues where noone speaks out for us. We all need to be more sensitive and aware-and I so applaud Kim for all she does.

Kim Stagliano said...

Oh my gosh. Oh. My. Gosh. I'm speechless. Alert The Times. Stagliano is speechlesss. Janet, thank you. We all have our spot in the world - I hope for my girls and the countless others, I can make their spot a bit better. Writing has allowed me to do that -and is far cheaper than therapy and "legal'er" than some of the other forms of relief an autism Mom considers!

Thanks to your wonderful client Mizz Tarquini for the heads up to pop over here.

And if any of your readers has a question or concern about autism - feel free to email me. The light is always on... Kim stagliano at g mail dot com.

Kim Stagliano said...

By the way, that beautiful young woman who spoke through her Mom at Writers on Auytism is named Rachel Kaplan. I had to fight to compose myself to speak after her.

And I'll be at the JCC Manhattan's Lit Cafe on April 10th for a reading for autism awarenss month if anyone wants to stop by to say hello.

:)

M. G. Tarquini said...

Total Coolness, they name is Kim.

M. G. Tarquini said...

Whoops! THY name is Kim.

Sheesh.

Mags said...

I sat beside my husband in a training years ago (we were both in human services, working with folks with myriad developmental and physical disabilities). The trainer asked everyone in the training what disability freaked them out most.

"Blind," one guy said, and several people agreed with him. The trainer inquired what it was about blind people that unsettled him and he responded that it was the lack of eye contact.

My husband was taking notes on his Braille writer at the time.

Jeff finds that experience funny to this day, but Jeff is extremely able explain to someone when the side-effects of their inexperience with his particular disability isn't working for him.

We're social animals. Communication that isn't "right" is hard for a lot of people.

Thank you for pointing some people who might not get the opportunity to explore a piece like Kim Stagliano's Huffington Post or her blog in the right direction.

I hadn't found it before tonight, and I've got not yet verbal seven-year-old autistic twins in my family. She wrote the hell out of that crap.

*This is officially my longest blog comment ever.*

Kim Stagliano said...

Mags, hello. I think you nailed it - our kids look so beautiful (my 7 year old is just finding her voice to make sounds and try to vocalize) that it disconcerts people when their behavior doesn't correspond to their looks. I hope the autism world has introduced you to many of the same wonderful people I've met on this weird, oh yes weird, ride called parenting a child who "doesn't fit the mold.

And that's darn funny story about your husband - he isn't the new gov of NY by chance is he? ;)

Please come on over to my blog and we'll tawk.

K

Jessica said...

Wow, this is a really beautiful post. Thanks Janet.

Lorra said...

When I hear about someone like Kim, I wonder if I would have the strength, the love, the grace to be the wonderful mother these very special children need and deserve. Her story is so humbling, so important, so filled with joy, hope and a mother's love.

Thanks for brightening my day.

Joanne Levy said...

I agree 100% - Kim is amazing. Not only is she funny and SO nice, willing to help out others even when she has so much on her plate, but she has a ton of class - taking life's lumps with a smile on her face (and usually a good one liner at the ready).

Kim Stagliano said...

Lorra, you would. Trust yourself. You just find it. Everyday is like lifting a car off an innocent bystander and wondering where you got the strength. You just say, "Jeez, I'm glad I did." and don't question the rest.

But I'm no saint - not by a long shot. I lose it. I cut people off on the roads. I forget to send thank you notes. I even yell at my kids. Why just the other day Gianna, my most typical child, ran through the house hollering, "Where's my GOD DAMN manatee?" (I had to run away to laugh.) No halo on me, I promise you.

Read my blog today with an entry I was allowed to copy from The Naked Writer - Cornelia Read is going through more than I can imagine with her 14 year old daughter with autism. And she created the most powerful blog entry I've read in a LONG time.

fas said...

My 23 year old autistic nephew is in college and has a 3.75 GPA, with a 4.0 in his major--something to do with computers and forensics that I can't even begin to understand. He has the likes of Fordham and Columbia sending him invitations to apply, was offered an internship at the White House(special program, but not everybody gets asked) and last summer, he even got his driver's license. I will grant you that he is on the higher end of the autism spectrum, but getting him to the point where he is now was like forcing him to push a 10 ton rock all the way to the top of a hill with his hands tied behind his back. But he got there. The little brat says that he wants to join the NYPD. Or the FBI. Can you picture it?

Autism isn't a death sentence. Think of it more as life at hard labor without parole. But it is a life, and it can be an excellent one.

Kim Stagliano said...

fas - How wonderful for your nephew! There are more college programs offering assistance to those on with autism. So often their high IQ is hidden behind behaviors and/or verbal problems. God bless the young man! Do send him to John Robison's blog for some wonderful info and support.

Autism isn't always a death sentence as it comes in so many variations. However, just yesterday I chatted with a woman seeking residential placement for her teen (young teen) child. That's a horse of a different color from considering college.

Kim

A.S. King said...

Kim ROCKS.
Great post, Janet.

fas said...

Kim,

I in no way meant to imply that autism is not horrible and I am sincerely sorry if what I wrote sounded at all glib. I didn’t intend it to be. The thing is that I just mentioned all the wonderful things that have happened and omitted the heartbreak. And there has been much heartbreak. My nephew’s younger brother, also autistic, was diagnosed with cancer when he was 9, underwent 8 surgeries, a couple of them horrific (at least to those of us who love him), three months of very intensive chemo and was given only a 70% chance of survival. Thank God, he did survive and is now 4 months shy of his 4th year of remission. Before this, my older nephew’s prognosis was dismal at best, but after, everything changed, and I truly hate to put it this way, but it was almost as if his baby brother’s cancer “fixed” him and he went from being at the middle of the spectrum to the top in a matter of only months. Mostly, I think, it put into perspective for him all the terribly anxiety that every autistic person suffers. Before, he’d get fixated on failing to the point of being literally suicidal and had all the multitude of other problems that autistic kids have and that, very, very regrettably, I need not explain to you. Those problems are still there today--imperfect speech, mannerisms and behavior that make people stare, and the most minimal of social skills, among others. However, he is not allowing any of that to hold him back now, because, frankly, what could possibly riddle him with more anxiety than the possibility that his brother’s cancer might very possibly kill him one day. A death sentence is a death sentence and I would never use the term to imply anything less than what it is. I just meant to say don’t let anybody ever tell you that this is the best you’re child can do.

fas

Gloria said...

Thank you for posting that. I'm the mother of an autistic 6 year old boy. When I say he's autistic people automatically assume he's better than he is. Then I have to do what I hate most, explaining how he truly is behind. I'd rather be singing the praises of what he's over come. Thank you for pointing out the darker side people tend to ignore.

I'm a (less than mildly successful) fantasy writer and have unfortunately read two fantasy stories that use autism as a gimmick (one slightly more tasteful than the other, but still heart breaking at its exploitation). When I read those, I felt like people not just involved in writing, but every where, would perhaps never understand or really care to. Thank you for proving me wrong, Ms. Reid. Sincerely, thank you.

jenny gardiner said...

I am sorry I'm coming late to this but couldn't miss a chance to shout out to my bud Kim. She really is AWESOME and the GMA appearance was so professional, all while being a wonderful mom to her girls, who clearly had not great interest in hanging out while mom talked dollars and cents...
I am one of Kim's biggest fans and if you guys haven't gone over to her blog or read her HuffPost entries, please do so. She's THE BOMB, smart as hell, funny as can be and someone worth spending time with.

Carolyn Burns Bass said...

Janet, you rock for crowing about Kim. Kim's a gem.

Kim Stagliano said...

FAS, I wasn't remotely offended, no worries! Just pointing out the broaaaadh spectrum that shares the same name, autism. I'm proud of your nephew too! I've said it a thousands times, the kids who are high functioning often have a tougher row to hoe - since people's expectations of them are higher. And I do think John Robison's blog will be helpful for you and for your nephew.

Peace,

KIM

(PS) I'm sufficiently humbled, grateful and astounded. Thanks everyone.