Technorati Tags: autism, autism blog, autism siblings, autistic, trampoline
6.28.2008
The Human Camera
One of the very most funnest parts about having a child with autism is having people ask about that child's special gifts. Jennyalice and I both think our boys are really good at eating, but that's probably not what people want to hear. I think they're hoping our children will amaze them the way Stephen Wiltshire amazes me:
And by the way, we do think Leelo and Jake are amazing, and not just because they could each win an adaptive pie-eating contest.
video link from my mom and Jo Spanglemonkey, among others.
And by the way, we do think Leelo and Jake are amazing, and not just because they could each win an adaptive pie-eating contest.
video link from my mom and Jo Spanglemonkey, among others.
Technorati Tags: autism, autism awareness, autism blog, autistic, savant
Autism and Behavior: Think Before Judging
Susan Etlinger has written a moving essay on autism and the unpredictable public behaviors that can come with it, providing insights that might help observers think before passing judgment:
http://blogs.parentcenter.babycenter.com/momformation/2008/06/27/an-open-letter-to-parents-from-that-mom/
This afternoon, we will go to a barbecue at the house of our friends Ep and Clyde. At the house which used to be our house, with the playground that used to be our playground, alongside friends who know Leelo and will not be surprised or appalled by anything he does. We're all set up for a successful afternoon.
But the next time Leelo is out of his element in public, and demonstrating so only too vocally or physically, I just may hand out copies of Susan's essay.
http://blogs.parentcenter.babycenter.com/momformation/2008/06/27/an-open-letter-to-parents-from-that-mom/
This afternoon, we will go to a barbecue at the house of our friends Ep and Clyde. At the house which used to be our house, with the playground that used to be our playground, alongside friends who know Leelo and will not be surprised or appalled by anything he does. We're all set up for a successful afternoon.
But the next time Leelo is out of his element in public, and demonstrating so only too vocally or physically, I just may hand out copies of Susan's essay.
Technorati Tags: autism, autism awareness, autism blog, autistic, behavior
6.27.2008
When the World Expects You to Have Social Skills
Social skillz, I do not has them. I can muddle through, and if I've known people for a bit I usually feel comfortable with them, but in general when confronted with a novel social situation I will do one of three things:
DISABILITY ETIQUETTE
My son's special needs give me neither automatic diplomatic skills nor diplomatic immunity when it comes to others' disabilities. I therefore appreciate the Disability Etiquette Guide published by The United Spinal Association. Though they focus on supporting people with spinal injuries and disabilities, their Guide provides general tips for seeing and interacting with people, not their disabilities. With humor! (Always appreciated.) I intend to send this link to everyone I know who will ever interact with my son:
SOCIAL TIPS FOR ASPIES - FROM AN ASPIE (i.e., Person With Asperger's, via Liz Ditz's friend Emily)
For those of us who don't always get social cues, I found the long list of social interaction tips from LastCrazyHorn invaluable. The excerpted items below will be especially helpful for my older daughter, who is currently being warned that she's run into topical overtime by being asked to define 'perseveration' for me. Warning to IRL people: Iz may not remember these tips if you engage her in a "conversation" about musical instruments, or gemstones and crystals.
HOW TO BE A F***ING ADULT
SJ from I, Asshole, who like the much-mourned ex-blogger Josh Norton is basically a self-taught adult, frequently cites Tomato Nation's rules for those over 25 as helpful. While I don't agree with everything on the list -- I don't think I'm capable of learning how to walk in heels -- it is a good set of guideposts for those who were never shown the way.
Here is the one that cuts me to the quick, as it used to be an iron-clad personal rule but is now lying in rusty shards somewhere in a corner of my office:
- Say not one thing, and leave as soon as I can
- Talk far too much and too nervously, derailing the conversation
- Say exactly the wrong thing at the wrong time
DISABILITY ETIQUETTE
My son's special needs give me neither automatic diplomatic skills nor diplomatic immunity when it comes to others' disabilities. I therefore appreciate the Disability Etiquette Guide published by The United Spinal Association. Though they focus on supporting people with spinal injuries and disabilities, their Guide provides general tips for seeing and interacting with people, not their disabilities. With humor! (Always appreciated.) I intend to send this link to everyone I know who will ever interact with my son:
http://www.unitedspinal.org/disability-publications-resources/disability-publications/ (Disability Etiquette is the first .PDF on the list.)Helpful excerpts:
Always speak directly to the person with a disability, not to his companion, aide or sign language interpreter. Making small talk with a person who has a disability is great; just talk to him as you would with anyone else. Respect his privacy. If you ask about his disability, he may feel like you are treating him as a disability, not as a human being. (However, many people with disabilities are comfortable with children’s natural curiosity and do not mind if a child asks them questions.)
People with disabilities are the best judge of what they can or cannot do. Don’t make decisions for them about participating in any activity. Depending on the situation, it could be a violation of the ADA to exclude people because of a presumption about their limitations.
When people who have a disability ask for an accommodation at your business, it is not a complaint. It shows they feel comfortable enough in your establishment to ask for what they need. And if they get a positive response, they will probably come back again and tell their friends about the good service they received.
Say “person with a disability” rather than “disabled person.” Say “people with disabilities” rather than “the disabled.” For specific disabilities, saying “person with Tourette syndrome” or “person who has cerebral palsy” is usually a safe bet. Still, individuals do have their own preferences. If you are not sure what words to use, ask.
SOCIAL TIPS FOR ASPIES - FROM AN ASPIE (i.e., Person With Asperger's, via Liz Ditz's friend Emily)
For those of us who don't always get social cues, I found the long list of social interaction tips from LastCrazyHorn invaluable. The excerpted items below will be especially helpful for my older daughter, who is currently being warned that she's run into topical overtime by being asked to define 'perseveration' for me. Warning to IRL people: Iz may not remember these tips if you engage her in a "conversation" about musical instruments, or gemstones and crystals.
- In conversations, only return to a topic one time, and twice if you absolutely can’t stand it, but no more than that.
- Watch out for signs of boredom in a conversation. Easy ones to pick up include: constant checking of the watch, looking over their shoulder away from you, and answering everything you say in monosyllabic grunts that sound more or less like “Uh huh.”
- Never talk on a subject as long as you want. Pick some major features and discuss those.
- Pause in conversations and ask the other person their opinion.
- Listen to their opinion. If they say something like, “please go on.” Then you can continue on. If they say something like, “That’s very interesting,” and then do something like look away from you, you should do one of two things: Ask them to talk about themselves or give them an escape — “I don’t want to keep you from what you need to be doing . . . “
HOW TO BE A F***ING ADULT
SJ from I, Asshole, who like the much-mourned ex-blogger Josh Norton is basically a self-taught adult, frequently cites Tomato Nation's rules for those over 25 as helpful. While I don't agree with everything on the list -- I don't think I'm capable of learning how to walk in heels -- it is a good set of guideposts for those who were never shown the way.
Here is the one that cuts me to the quick, as it used to be an iron-clad personal rule but is now lying in rusty shards somewhere in a corner of my office:
Remember to write thank-you notes. If you do not know when a thank-you note is appropriate, consult an etiquette book — the older and more hidebound the book, the better. When in doubt, write one anyway; better to err on the side of formality. An email is not sufficient thanks for a physical gift. Purchase stationery and stamps, set aside five minutes, and express your gratitude in writing. Failure to do so implies that you don't care. This implication is a memorable one. Enough said.Happy weekend, all.
Technorati Tags: disabilities, etiquette, diplomacy
The Referral
I guess it's something when you tell your crusty, practical-minded GP why you'd like a referral for dealing with stress and depression, and she tears up. I have always adored Dr. Park, but until today didn't even know she had tear ducts.
She did give me the referral, and I did make the call.
The only reason I'm recording this here is to reiterate my belief that it is not only okay but important to ask for help, even if it personally makes you feel like you're weak and a failure. Especially if other people depend upon you and your strength. I'm not doing this for me.
She did give me the referral, and I did make the call.
The only reason I'm recording this here is to reiterate my belief that it is not only okay but important to ask for help, even if it personally makes you feel like you're weak and a failure. Especially if other people depend upon you and your strength. I'm not doing this for me.
Technorati Tags: stress, special needs parenting
6.26.2008
Would You Put a Cheeky T-Shirt on Your Special Needs Child?
My opinion on the matter, as someone who loooooves her collection of nose-thumbing tees:
Cheeky t-shirts have their place, if thoughtfully chosen. Humor can grease the public social skids for our children, especially those with visible disabilities and/or limited communication skills. If your child has the language skills to have a conversation about the shirt, even better. But it's important to not underestimate our children's impish sense of humor.
Your take?
Cheeky t-shirts have their place, if thoughtfully chosen. Humor can grease the public social skids for our children, especially those with visible disabilities and/or limited communication skills. If your child has the language skills to have a conversation about the shirt, even better. But it's important to not underestimate our children's impish sense of humor.
Your take?
Technorati Tags: cheeky, t-shirts, special needs kids, special needs parenting
6.25.2008
My Head, Reattached
My head blew off my shoulders about a month ago, after one of the most traumatic experiences of my parenting career.
Though I alluded to PTSD a few times during the interim, it has taken me weeks to write about this incident without almost fainting from the stress of the-horribleness-that-might-have-been. Thinking about the danger Mali was in still makes my heart pound and hands shake. And the aftermath was a depression spiral unlike anything I've ever experienced, and from which I am only now emerging.
A few weeks ago I went to pick up Iz from school as per usual. Leelo and Mali were strapped into their five-point-harness carseats, Leelo having been returned to lockup only a few days beforehand due to his newfound tendency to unbuckle himself mid-ride and thwack me or his sisters. Leelo had also been too aggressive lately to risk parking and walking in to get Iz, so I waited with the other curbside pickup parents in our line of idling minivans, wagons, and trucks.
Iz did not notice me at the back of the line, so I turned off the car, stepped out, and shouted at Iz to let her know I was there. Then I turned back to my car.
The door had shut. Not only had it shut, but it had malfunctioned; the button was in the "open" position, but the door was locked.
Leelo, Mali, my keys, and my phone were all in that car.
I suppressed my panic. Leelo was in his five-point carseat, and the day wasn't as hot as it had been the previous week. Leelo and Mali would be fine in the car for a few minutes. I walked over to a friend's car and asked to use her phone to call for help. I then called the local Honda dealer, as they were two blocks away and it was their fucking car door that had malfunctioned.
The receptionist was chilly, telling me that opening locked car doors wasn't really their deal.
I lost it.
"MY THREE-YEAR-OLD IS LOCKED IN THAT CAR WITH HER AUTISTIC SEVEN-YEAR-OLD BROTHER AND IF HE GETS OUT OF HIS CAR SEAT HE WILL BEAT THE SHIT OUT OF HER AND I DID NOT LOCK THE DOOR AND THE BUTTON IS IN THE OPEN POSITION AND YOU WILL OPEN THIS DOOR BECAUSE YOU ARE ONLY TWO BLOCKS AWAY!"
The receptionist's empathy chip flipped on. She asked me for my car's VIN# and location, and the number of my phone, and assured me that someone would be there posthaste. I thanked her while mentally scanning the area for blunt items with which to break one of the car's windows, and targeted some nearby kids' skateboards.
I tried to shove images of Leelo extricating himself from his car seat from my head, but was unsuccessful. His car seat straps are now long enough and he is smart and dexterous enough that, should he care to, all he would have to do is shove the chest bar all the way down to the crotch buckle, and wiggle his way out the top. I started to get shaky.
By this time Iz and several of her friends had circled the car, talking with Mali through the window. I joined in, asking Mali if she could undo her chest buckle and open the door, as she is a clever little monkey and it seemed possible with the proper coaching. Instead, she undid her crotch buckle and, before I could stop her, slid down so that her body was hanging out the bottom of the seat and into the air, with the chest buckle pinning her throat, right under the chin.
This is the point at which I lost all pretenses of calm. I tried not to let Mali or the other girls sense my hysterics as we talked Mali through walking her feet up the back of the seat in front of her and avoiding asphyxiation, but by the time her bottom was back in her seat I was crying outright.
Leelo, meanwhile, was starting to get agitated. While he couldn't reach Mali's seat, he could certainly kick its back, and he proceeded to do so, continuously. Now both kids in the car were hysterical, too.
The dealership called back on my friend's phone, asking for some more details and letting me know that they'd be there in a few minutes. By now almost 20 minutes had passed and most of the other students, cars, and adults had left.
My friend and her phone needed to leave. Two other parents came by, and said they would stay around to ensure a happy ending for us. One of them told me she knew just how I felt, as she had locked her kids in her car before. "I DIDN'T LOCK MY CAR!" I yelled, still hysterical. "AND MY AUTISTIC SON IS TRYING TO GET OUT OF HIS CAR SEAT AND IF HE GETS OUT BEFORE THAT KEY GETS HERE, HE WILL START TO HURT HIS BABY SISTER AND I WILL HAVE TO BREAK A WINDOW." Then I took a breath. "But, thank you," I said. "I appreciate your help." Then I resumed crying.
The car was rocking and both kids inside screaming by the time the good mechanics from Honda arrived a few minutes later. The key worked, instantly. I leapt into the car and kissed both kids inside. They seemed fine. Iz was very relieved.
I hugged a mechanic before he could run away, but not before he told me that the dealership was going to eat the cost of the key because of the lock malfunction.
I drove us all home.
I took the mechanics a big box of chocolates the next day.
And I spent most of the next two weeks in a haze, taking to my bed or the couch whenever I could, and trying to avoid thinking about what COULD have happened. Unsuccessfully.
The End.
Though I alluded to PTSD a few times during the interim, it has taken me weeks to write about this incident without almost fainting from the stress of the-horribleness-that-might-have-been. Thinking about the danger Mali was in still makes my heart pound and hands shake. And the aftermath was a depression spiral unlike anything I've ever experienced, and from which I am only now emerging.
A few weeks ago I went to pick up Iz from school as per usual. Leelo and Mali were strapped into their five-point-harness carseats, Leelo having been returned to lockup only a few days beforehand due to his newfound tendency to unbuckle himself mid-ride and thwack me or his sisters. Leelo had also been too aggressive lately to risk parking and walking in to get Iz, so I waited with the other curbside pickup parents in our line of idling minivans, wagons, and trucks.
Iz did not notice me at the back of the line, so I turned off the car, stepped out, and shouted at Iz to let her know I was there. Then I turned back to my car.
The door had shut. Not only had it shut, but it had malfunctioned; the button was in the "open" position, but the door was locked.
Leelo, Mali, my keys, and my phone were all in that car.
I suppressed my panic. Leelo was in his five-point carseat, and the day wasn't as hot as it had been the previous week. Leelo and Mali would be fine in the car for a few minutes. I walked over to a friend's car and asked to use her phone to call for help. I then called the local Honda dealer, as they were two blocks away and it was their fucking car door that had malfunctioned.
The receptionist was chilly, telling me that opening locked car doors wasn't really their deal.
I lost it.
"MY THREE-YEAR-OLD IS LOCKED IN THAT CAR WITH HER AUTISTIC SEVEN-YEAR-OLD BROTHER AND IF HE GETS OUT OF HIS CAR SEAT HE WILL BEAT THE SHIT OUT OF HER AND I DID NOT LOCK THE DOOR AND THE BUTTON IS IN THE OPEN POSITION AND YOU WILL OPEN THIS DOOR BECAUSE YOU ARE ONLY TWO BLOCKS AWAY!"
The receptionist's empathy chip flipped on. She asked me for my car's VIN# and location, and the number of my phone, and assured me that someone would be there posthaste. I thanked her while mentally scanning the area for blunt items with which to break one of the car's windows, and targeted some nearby kids' skateboards.
I tried to shove images of Leelo extricating himself from his car seat from my head, but was unsuccessful. His car seat straps are now long enough and he is smart and dexterous enough that, should he care to, all he would have to do is shove the chest bar all the way down to the crotch buckle, and wiggle his way out the top. I started to get shaky.
By this time Iz and several of her friends had circled the car, talking with Mali through the window. I joined in, asking Mali if she could undo her chest buckle and open the door, as she is a clever little monkey and it seemed possible with the proper coaching. Instead, she undid her crotch buckle and, before I could stop her, slid down so that her body was hanging out the bottom of the seat and into the air, with the chest buckle pinning her throat, right under the chin.
This is the point at which I lost all pretenses of calm. I tried not to let Mali or the other girls sense my hysterics as we talked Mali through walking her feet up the back of the seat in front of her and avoiding asphyxiation, but by the time her bottom was back in her seat I was crying outright.
Leelo, meanwhile, was starting to get agitated. While he couldn't reach Mali's seat, he could certainly kick its back, and he proceeded to do so, continuously. Now both kids in the car were hysterical, too.
The dealership called back on my friend's phone, asking for some more details and letting me know that they'd be there in a few minutes. By now almost 20 minutes had passed and most of the other students, cars, and adults had left.
My friend and her phone needed to leave. Two other parents came by, and said they would stay around to ensure a happy ending for us. One of them told me she knew just how I felt, as she had locked her kids in her car before. "I DIDN'T LOCK MY CAR!" I yelled, still hysterical. "AND MY AUTISTIC SON IS TRYING TO GET OUT OF HIS CAR SEAT AND IF HE GETS OUT BEFORE THAT KEY GETS HERE, HE WILL START TO HURT HIS BABY SISTER AND I WILL HAVE TO BREAK A WINDOW." Then I took a breath. "But, thank you," I said. "I appreciate your help." Then I resumed crying.
The car was rocking and both kids inside screaming by the time the good mechanics from Honda arrived a few minutes later. The key worked, instantly. I leapt into the car and kissed both kids inside. They seemed fine. Iz was very relieved.
I hugged a mechanic before he could run away, but not before he told me that the dealership was going to eat the cost of the key because of the lock malfunction.
I drove us all home.
I took the mechanics a big box of chocolates the next day.
And I spent most of the next two weeks in a haze, taking to my bed or the couch whenever I could, and trying to avoid thinking about what COULD have happened. Unsuccessfully.
The End.
Technorati Tags: autism, autism blog, autism siblings, autistic
Butterflies
I have a BlogHer conference call in five minutes. The four other women on my panel kick so much blogging ass and do it so graciously and eloquently that I may hurl upon hearing their voices. But I suppose it is important for someone to be the slacker and whiner, so as to provide diversity of attitude. Regardless, I feel so very, very privileged.
I hope I will resort to neither of my usual interpersonal conversation techniques: chattering nervously or clamming up.
I hope I will resort to neither of my usual interpersonal conversation techniques: chattering nervously or clamming up.
Technorati Tags: BlogHer, special needs, special needs kids, special needs parenting
6.24.2008
Izzy Billy Goat
Here is my strong, capable daughter scaling a very tall wall, in a flash:
This girl inherited her tennis-playing grandmother's body. She is all natural muscle, unlike her mother, who has been naturally gooey even when swimming and (okay, shut up) cheering competitively. Mostly I just gawk at her and wonder how that body came from mine.
Obviously, I have been misunderstanding that body's needs, because when she came home from her rock climbing day, she declared it to be the "Best Day Ever of My Life!" and was still sweating glee. That body of hers, its craves exercise and the resulting endorphins. *lightbulb* Natural mood enhancers for our so-easily-grouchified girl? 'Twould be welcome.
She's brought home the National Fitness Something-or-Other Certificate two years in a row, an honor that few of her classmates achieved. This should have been a clue, but my neglect of her body's needs is understandable -- her head and mouth draw rather a lot of attention to themselves. But we'll be pondering more ways to get her full-body exercise.
This girl inherited her tennis-playing grandmother's body. She is all natural muscle, unlike her mother, who has been naturally gooey even when swimming and (okay, shut up) cheering competitively. Mostly I just gawk at her and wonder how that body came from mine.
Obviously, I have been misunderstanding that body's needs, because when she came home from her rock climbing day, she declared it to be the "Best Day Ever of My Life!" and was still sweating glee. That body of hers, its craves exercise and the resulting endorphins. *lightbulb* Natural mood enhancers for our so-easily-grouchified girl? 'Twould be welcome.
She's brought home the National Fitness Something-or-Other Certificate two years in a row, an honor that few of her classmates achieved. This should have been a clue, but my neglect of her body's needs is understandable -- her head and mouth draw rather a lot of attention to themselves. But we'll be pondering more ways to get her full-body exercise.
New Can I Sit With You? Story: The Absolute Clearheadedness of Mrs. Rutland
This one's for the fifth grade rebels who had it in them to try to buck the system, their teachers, and their principals.
http://canisitwithyou.wordpress.com/2008/06/23/the-absolute-clearheadedness-of-mrs-rutland/
http://canisitwithyou.wordpress.com/2008/06/23/the-absolute-clearheadedness-of-mrs-rutland/
Technorati Tags: Can I Sit With You, Can I Sit With You?
6.23.2008
First Day of Summer Camp/School
Trust me, these kids aren't nearly as happy as their mom:
As tiring as was that week without any of them in school or camp, it was doable, and I managed to keep them busy enough that we all had fun. Even though my worn-out body quite literally collapsed every night.
The one time we managed to wear out Leelo was when our Hawaiian-resident friend Twister and one of his diving proteges came over to show Leelo serious trampoline techniques. I got tired just watching them bounce. Twister and Leelo have comparable energy reserves, and Twister works at a school for the disabled, so they were a good match.
Here is Twister doing his own thing on the trampoline (divers hone their moves on trampolines before they ever hit the platform/water). His agility is even more impressive when you consider that he is six and a half feet tall.
Summer is starting to feel like summer usually does: warm and glowing, with me perpetually slightly addled. It's not a bad way to be unless you're depending on me for something.
As tiring as was that week without any of them in school or camp, it was doable, and I managed to keep them busy enough that we all had fun. Even though my worn-out body quite literally collapsed every night.
The one time we managed to wear out Leelo was when our Hawaiian-resident friend Twister and one of his diving proteges came over to show Leelo serious trampoline techniques. I got tired just watching them bounce. Twister and Leelo have comparable energy reserves, and Twister works at a school for the disabled, so they were a good match.
Here is Twister doing his own thing on the trampoline (divers hone their moves on trampolines before they ever hit the platform/water). His agility is even more impressive when you consider that he is six and a half feet tall.
Summer is starting to feel like summer usually does: warm and glowing, with me perpetually slightly addled. It's not a bad way to be unless you're depending on me for something.
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