(Apologies for the posting delay. I'm coming off a 40-hour day that included a Can I Sit With You? Live! event, plus an overnight vigil to sign Leelo up for summer camp -- during which the temperature hovered around 40 degrees, I got in a screaming match with another parent (not proud, details to come), and my cohorts and I succeeded in getting our kids into our first choice camp dates.)
Why is it that no one ever talked about my junior high classmate Deanna's sister? Why is it that we didn't know that she had a sister with special needs the same way people knew that Sally's sister played the tuba, that Michael's dad was a dentist, or that Gillian had a single mom?
I suspect it was because parents of children with special needs were so much more isolated from each other twenty years ago. I am guessing that without today's online social facilitation tools like Yahoo! email groups, Twitter, Facebook, and blogs, it was much more difficult to hook into a community of friendly but assertive parent advocates, and so speak out or take action on behalf of one's kids.
I have those online tools at my disposal, so this is what I do with them:
I blog, obviously. While my posts skew more towards Leelo's challenging and less towards his happy contented times, I want his humanity fully documented. I want people outside the special needs community to know that kids without recovery success stories can thrive, too. And that they are very, very loved.
I take advantage of my position on both typical and special needs parenting yahoo! email boards to promote easy opportunities for kids to build empathy for their special needs peers. I want the parents of those typical kids to see that I have no problem talking about my special needs child, and that I want their kids to feel the same way (am I using guilt to twist their arms? Maybe. That line is sometimes blurry). Here's this week's example:
The last three performances of the Pacifica Spindrift Players' The Miracle Worker are this weekend: http://www.pacificaspindriftplayers.org/I use those same boards to spread information and hand out tools from our local Special Ed PTA (SEPTAR) meetings, such as Diane Levinthal's presentation on Helping Peers Understand our Kids's Social Challenges. Diane's is a script that any parent can present:
For those who may not know, The Miracle Worker is the story of Helen Keller and Annie Sullivan, and is a wrenching but ultimately cathartic portrayal of the freeing of a trapped mind. In the play, blind and deaf Helen is basically feral until Annie comes into her life and shows her how to communicate. With Annie's guidance and advocacy, Helen blossoms and eventually becomes an author and political activist. (More information: http://en.wikipedia.org/wiki/Helen_keller)
My eight-year-old son won't sit through a play, but I'm rounding up a crew of his neurotypical ten-year-old sisters' friends, and driving them to the play myself. And not because I'm altruistic -- it is part of an ongoing campaign to help my daughter's friends see her autistic brother as a person and a soul despite his communication difficulties.
I'm putting this out there for any like-minded parents who might not know of this opportunity.
Those peers and their parents only live inside their computers part of the time, so I take offline action, as well:
I take Leelo out as much as I can. I want peers to know that my daughters have a brother. (Really, I want Leelo to be comfortable with our entire community, and I would like that feeling to be mutual.) Leelo's recent behavioral challenges put his ambassadorship on temporary hiatus, but Risperdol seems to be helping him once again tolerate and even enjoy the world outside our house and his school.
I try to make our house a destination for all three of my kids' friends. We have a pool, a big trampoline, and lots of toys. We always have pizza, cookies, or ice cream. We have wiggle cars, scooters, and ideal hide-and-seek conditions. We have beanbags and walls of books. We have a big wild tree-filled hillside for exploring, including a path that leads to a neighbor's horse corral. I want Iz's and Mali's friends to want to come to Leelo's house. I want their peers to spend time around Leelo, to get to know him, to understand how to hang out with him. I have no problem providing whatever bait it takes to reel them in, and get them to stay.
I know we can't reach all of Iz's and Mali's friends. I know that peer pressure may get to the more weak-willed of them, and make them start declining play dates. Friends who once understood that Leelo has occasional accidents, that his behavior is sometimes erratic, may start to be less comfortable as coolness and rebellion factor into their social calculations.
I also know that kids can be heartless. The most horrifying conversation I've ever overheard took place between two typical high school jocks: they laughed as they described the mean things a friend did to his wheelchair-bound paraplegic mother because she couldn't stop him. I have always wondered if they were just crossing sticks to impress each other, or if they really were that awful? If they and their parents had been exposed to everything I've listed above, would they have known better?
What I am trying to do, what I will keep doing, is trying to reach kids like them, like the junior high me. Kids whose empathy can hopefully be cultivated, with enough early guidance and immersion.
My girls' lives are going to be challenging enough with Leelo as their brother, darling as he can be. I'm doing whatever I can to make sure their peers don't make their lives even harder.
The inspiration for this series was Facebook's continuing insistence that I Friend Deanna -- we share almost 30 friends. I cringe every time her picture is served up.
Technorati Tags: autism, autism blog
As usual, awesome!ReplyDelete
Great post. A lot of parents of autistic kids that I know tell me they never, ever go out with that child... I guess I'm different, we don't see jaymes as someone who should be left behind. Sure, he can be a pill at Walmart, but he comes anyway. He goes out to restaurants and events, and if it's too much for him we leave. A lot of places in our community do treat us like crap for it, but an equal number have come to know Jaymes, and help us out. Our local CiCi's Pizza owners and I got into a conversation one day, and they learned a lot about Jaymes and autism- and they are awesome about things. The library too, though we try not to disrupt too frequently!ReplyDelete
Most of the neighborhood kids know Jaymes and accept his behaviors without judging him, which is wonderful. They don't understand why he is the way he is, or what autism is, but they don't make fun of him, and they encourage his odd behaviors (holding hands, spinning, trying to lead them places) kindly.
I am the parent of a neurotypical child far from you and I have learned a great deal from your blog. I know a couple of kids in my life who may be less typical and I hope that I have been more compassionate toward them and their families because of it. I don't want a medal...I just want to say that you are totally having an affect. and its really made me think about kids and ways we can make being compassionate and understanding cool.ReplyDelete
I have actually been thinking about this lately. I am an autism sibling and my son has autism. I love your ideas about making your home the "hang out place." Although my growing up was not a negative experience, I want to make sure that my son's future siblings have an even more positive one.ReplyDelete
@Amber, nice to hear that you're encouraging Jaymes's ambassadorship. I would hug every encouraging kid in your neighborhood if I could.ReplyDelete
@Jen. Thank you. You made my day.
@Celeste Jean, what an invaluable perspective you have. Thanks for sharing such a positive outlook!
I think (and I mean this in the most compassionate way) that you should give in to Facebook's insistence - because you know if you're getting all of those perky "wouldn't you like to send a friend request to Deanna?" reminders, then she's getting the same number popping up with your face attached...and why not just rip the band-aid off after all these years. If she snubs you, well, the karmic debt is settled. If she forgives you, or says, "huh? what are you talking about?" then it will be an enormous relief to you and perhaps an opportunity to share what you have learned from her without her even being an active participant in the teaching.ReplyDelete
Just my crusty old $.02, from a former mean girl who similarly tried to shake off the stink of geekiness and climb the social ladder by shunning those who seemed vulnerable...