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.
Posted by Shannon Des Roches Rosa at 10:14 PM
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.
Posted by Shannon Des Roches Rosa at 3:50 PM
- 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
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.
Posted by Shannon Des Roches Rosa at 1:56 PM
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.
Posted by Shannon Des Roches Rosa at 1:37 PM
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.
Posted by Shannon Des Roches Rosa at 10:15 AM
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.
Posted by Shannon Des Roches Rosa at 12:11 PM
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.
Posted by Shannon Des Roches Rosa at 9:57 AM
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.
Posted by Shannon Des Roches Rosa at 11:16 PM
Posted by Shannon Des Roches Rosa at 9:55 PM
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.
Posted by Shannon Des Roches Rosa at 3:35 PM
Unfortunately, the sugar rush from the M&M's kept him popping out of bed from 8:30 to 10:30 PM despite his exhaustion from a morning of riding his tricycle in the sun, an afternoon at DoubleTrouble's twins' multiply-bounce housed birthday party, and an evening ABA session with Therapist R. So the sugary bribes were not a great idea. But I think we can probably get Leelo through another movie on the veggie booty alone. And then phase that out too, like the responsible behavioral modification-oriented family we are.
I am proud of Mali, too. A year ago she couldn't sit through Happy Feet, and six months ago she spent most of The Golden Compass yelling at the characters on the screen. Last week she watched Kung Fu Panda quietly, only getting out of her seat a few times -- and once it was so she could boogie down to Kung Fu Fighting during the end credits.
I should have posted about Leelo's successful movie experience earlier. But since I joined Twitter I sometimes forget to update the blog post-tweet as apparently it's hard for my brain to process more than one digital information upload. If you want the most recent info on what we're up to, it's usually down there on the lower left hand side Twitter section.
Posted by Shannon Des Roches Rosa at 11:59 AM
MMR booster yesterday morning. Longtime readers will know what a huge deal this is. It took three of us to hold him down after I asked the nurse to be quick and she said "I'm always fast" -- as she held the syringe in front of Leelo's face.
It has been more than five years since his last dose of MMR.
Mali got her DTaP. This is only her second vaccination. She was sad, but perked up when I made her a "hand balloon" out of an exam glove purloined from the box on the wall. I tried getting her back on schedule earlier in the year, but she had some kind of runny nose or coughing ook for months. She is now better, and as Summer is the time when young children frolic barefoot and step on rusty nails, I figured the Tetanus-comprising DTaP was the way to go.
Snarks aside, the vaccination issue is still a very complicated one for me, still makes my stomach do flips. I have a child who is disabled for reasons no one can explain, and some professionals argue very strenuously that the MMR vaccination will exacerbate that disability.
Why would I believe those arguments? Five years ago the support for families of children with new autism diagnoses wasn't nearly as extensive as it is now. There was no Autism Speaks 100 Day kit. There were no local online support communities. There was only Google, and the Golden Gate Regional Center telling me that my son had autism, and they'd put him in group speech classes two times per week. Everything else, we found on our own.
So, five years ago I was doing the New Diagnosis Freakout and would have done practically anything to help my son. I believed a lot of people, some of whom I now think were earnestly misguided, and some of whom I believe were riding the autism gravy train.
Five years later I have read through landslides of scientific arguments rebutting the vaccine/autism link. I continue to see so many autistic children who look Just Like Leelo that I suspect my son was who he is from conception. I no longer feel some sort of environmental trigger caused his autism. And I try not to focus on why he is the way he is, but rather on helping him gain skills, feel loved, and deal with the world -- and making damn sure the world deals with him.
As for my public stance on vaccination, here is what I recently wrote to the local Mothers Club and its community of wide-eyed parents with children under five:
Short version: Unless your family has a history of neurological or immunological disorders, vaccination is a social obligation.
Long version: In order to be very clear about any effects vaccines may have on your child, try to vaccinate on a slower than standard schedule, with only one vaccination per visit, at least one month between vaccinations, and only when your children are absolutely healthy. Finding a pediatrician who will agree to a delayed/spaced schedule is not always easy, but I have found that many pediatricians at PAMF.org are flexible. (Also, it is possible that not all insurance companies will cover this approach, that it may lead to excessive co-pays, and that it may be truly unrealistic to those who pay out of pocket or depend upon clinics.)
Here are some reasonable vaccination guidelines mixed in with a bit of sensationalism: http://tinyurl.com/2lbqtu
(I found Stephanie Cave's book What Your Doctor May Not Tell You About Children's Vaccinations [cited] to be helpful and measured in its positions.)
Most people pondering whether or not to vaccinate worry about the risk of autism. This is a legitimate concern. Not so much about the mercury-based preservative Thimerosal, as it is no longer contained in most vaccines (flu shots excepted) and the link between Thimerosal and autism has been debunked (http://www.sciencedaily.com/releases/2008/01/080107181551.htm), but because no one yet knows what causes many forms of autism, and the vaccines themselves cannot be entirely ruled out:
"Does this mean that we can say without a doubt that vaccines do not cause autism in some children? The answer to this question is “no.” There is emerging evidence that some children are immunologically compromised and therefore may respond in an atypical way to vaccinations. We do not currently understand how atypical immune responses might influence the developing nervous system or how commonly such adverse effects occur."
-From the vaccine position statement of the MIND Institute, one of the leading research centers for autism and other neurological disorders: http://www.ucdmc.ucdavis.edu/mindinstitute/newsroom/vaccineposition.htmlYou may also have heard talk in the news about a legal ruling in favor of a girl who developed autistic-like symptoms after being immunized. What is not always clarified is that the girl had a rare mitochondrial disorder that may have been aggravated by the vaccine. She was not just a regular kid who regressed into autism after being vaccinated. Here is a link: http://tinyurl.com/2u332f
So, yes, vaccination carries a risk. But in my opinion is comparable to the risk of air travel. If your family does not have a history of autism, Aspergers, or immunological issues, then you should vaccinate your kids. Thoughtfully. And with the guidance of a pediatrician who is equally thoughtful.
And while I don't think anyone should swallow the vitriol proffered by either side in the vaccination wars, you should know what people are saying: http://scienceblogs.com/insolence/2008/03/antivaccinationists_flood_the_ajc_blog_c.php
Posted by Shannon Des Roches Rosa at 8:10 AM
Inclusion requires extra work from both parents and teachers." What I neglected to mention was how to make inclusion work for the people who spend the most time with an included student: the classmates.
The information below was written by Deadwood City area local Diane, who is the director of the social skills facilitation program Social Strides, as well as the parent of a special needs child. I include it with her permission.
I think sensitivity and compassion can come from having included spec. needs kids in regular ed. I also know that there will be no choice, financially, in the future. Classrooms will HAVE to accept differences (and I say this knowing that EVERY kid is 'different'). How do we MAKE this positive for all?
What I think is important and overlooked, is that regular education peers are not given good information. The teachers are trained (supposedly) and the other staff, but the kids are told nothing except a basic, "Do unto Others" formula. Once you hit the last half of third grade and upwards, ALL the classmates realize that someone in class is especially different. It's been my observation that most kids (at least through 4th) are fairly supportive of an included classmate in that they may try to help out in the room, or more often, they just try to be polite and sort of ignore the child. (I taught in an spectrum inclusion project in one district, have worked in speech for 25 yrs and have a kid in 6th with Pdd/AdHd).
One of the most helpful things that I was able to do for my son and his classmates in an included setting (and for the other included peer in that same class) was to talk with them all about social, organizational and attentional/sensory "challenges" and "how to handle this as a peer." Students were absolutely astounded and *relieved* to find that it would be okay, for example, to tell a socially challenged peer that they were tired of listening and now it would be their turn to speak. Yes! It's okay to be direct and spell out the rules for social!! Please do!! Your included classmates are not "out of step on purpose!" They need roadmaps and information and you kids can share with them.
Regular ed. peers would help more and be more understanding if they knew what the heck was going on. After speaking in my son's 4th grade class, peers were coming up with helpful solutions that the staff hadn't thought of and asking much better questions about things they needed to know. Regular ed. parents showed up afterward to learn more about the "workshop" that held their child's interest and garnered their concern and understanding of "social challenges". I am not a wonderful speaker ~ no ~ I just had information that classmates wanted and shared it in a very practical way. All parents of special needs kids have this information. The object is to demystify and share practical strategies which allow them to help themselves and which end up helping our kids.
On a social level, it's the other students that have to deal with our kids 99% of the time, not the staff. And the numbers are growing for ASD [autism spectrum disorder]. We tell siblings what's going on, why not the regular education classmates? I think they deserve that much and can handle it. This is nothing like pointing out who does and doesn't have challenges in a particular classroom -- it is just about understanding and learning to cope with something that they are going to see more and more during each year of school. And that's what I told them -- "There are certain learning challenges on the rise and you *will* deal with this in your families, in class and in the community." As I said, they KNOW who has social challenges -- no one needs to use names or point fingers. I found that the two ASD kids in class welcomed a discussion, and ended up sharing out loud what life is like for them during our focused time. The regular education peers were absolutely glued to their seats, listening and learning. They got it, and at a deep level.
After the workshop one regular ed. 4th grader said, "I really don't know what this autism thing is (I never used the word autism!), but I just know that if it didn't exist, there is a lot I would not have in my life." This was a kid who had two friends on the higher end of the spectrum that could deal with his "adhd-ish" challenges without teasing him or making him feel weird. Lovely. Again, EVERYONE has "differences" in a classroom. One of the kids with ASD wrote a letter saying, "Thank you for telling people that it's okay to tell me what I should do - I am so scared when people just yell at me."
Thanks for reading; this is obviously a hot topic for me. Think about going into your child's class and sharing some specific yet age appropriate information, especially if you plan on attending this same school over the next several years. An added benefit is that if aides or teachers are in there while you are talking, they can learn more about the realities than they do from a teacher in-service and also feel freer to ask questions about challenges "on behalf of the children."
Posted by Shannon Des Roches Rosa at 5:00 PM
But I didn't realize that Seymour would be off at a conference, so I couldn't top off these days of excessive mothering by collapsing on the fainting couch the moment he walked in the door, claiming a "spell" and then scurrying off to our room to poach this month's copy of Fantasy & Science Fiction magazine.
There is no Seymour. There isn't even FSF. He packed it.
What we have instead are some highly planned days. Reason: there is no such thing as downtime with these kids; Leelo needs 1:1 supervision at all times, e.g., he escaped from our back deck in the time it took me to tweet a message to a friend. My kid can escape in 140 characters or less. Being out of school makes him agitated and unable to self-direct except to eat eat eat, so there is no hanging around the house watching TV as a group or reading the newspaper or even washing any dishes. If the girls are anywhere near Leelo, he will hit them. We need to be doing things that we can do as a group, things that will keep Leelo active yet engaged.
Yesterday we took off on a hike along our favorite Little Butano Creek Trail. Iz did a lovely job guiding her little sister away from creek cliff edges and keeping her on the trail. She was also a good sport about letting Leelo run after her on the flatter stretches. I was wearing Seymour's white fleece pullover. By the time we finished the hike, it was covered in sooty black handprints from Leelo exploring burned out tree "lightening caves" and then smacking me.
Then I took them all to Pamplemousse for a treat. We sat at two different bistro tables, with Leelo and me at one and the girls at the other. Some discussion even took place, about privilege and entitlement and how people who are born with gifts have a moral obligation to use them for good. I used our fearless leader as an example of someone who was born with everything, and cruised his way through life without any understanding of the real costs of his actions, no matter the degree. I told her that it is too easy to be the kind of person who checks off lists, who only does what she should, instead of realizing her potential, instead of doing what she could. She seemed to listen but then we were talking about gems and about what is the name of that harder-than-diamond carbon-based lab creation again blahbitty blah.
We came home to find the charming and patient Liz Ditz sitting on our doorstep. Literally. She had come to see what Leelo thought of Handwriting Without Tears. He thought much of it was pretty cool. He enjoyed learning the recite/trace routines especially. We chatted about communication devices and whether we'd ever considered one for Leelo given the gap between his excellent receptive and less than excellent expressive language. I told her about his picture schedule and how much he loves it, but a device might be something to consider.
[I'm really exhausted. Dispatch-style from here on.]
Then Liz and I watched the kids swim while we chatted. The only relaxing part of the day.
Wonderful Ep came to take Iz to aikido and let Merlin see what he thought of her dojo, saving me four cross-town trips in one hour.
Therapist R arrived, to Leelo's relief, and they played while I made dinner. Ep and Clyde came over for dinner and trampolining.
Bed/bath time. Grouchy Mommy did not read Treasure Island with Iz.
Today: Woke up at 6:30 with a start. Too early! And still exhausted from previous day. But Leelo was up, that meant the world needed to be up with him.
Sleep study person came over to drop off camera and sleep diaries and forms and wristbands and such. She will come back in the morning to retrieve the camera and do some sort of language inventory of Leelo. C-TONI, I think?
Got all those children dressed and cleaned up the house somehow and picked up Iz's friend Emma and took everyone to the cafe for breakfast. Need to rearrange carseats; with Leelo and his flailing fists and kicking feet confined to the five-point throne in the back seat, our seven-seat car only seats five.
Dropped Emma back home with promises of skating and KungFu Panda the next day.
Went to Ep and Merlin's house (our old house) to play play play. Leelo had the best time ever following all his old circuits in the yard. Mali demonstrated good third-child resilience by not making any fuss after several face-plants off the trapeze and into the tan bark, just as she had reacted to one of Leelo's friends' pushing her head underwater in the pool not by crying or screaming, but by telling the boy's mother matter-of-factly, "He pushed my head under water!" Not all is perfect with her, though; she does not compute the "we don't hit" as her brother hits people all day long and gets away with it; why shouldn't she? Proud mother, that's me.
Took Merlin so Ep could get some work done, as she has clients breathing down her neck and her partner is out of town, too.
First order: pizza! Went to this place called "Papa Murphy's" where they said it would take them ten minutes to assemble a pizza. So we went next door (with all four kids) and got ourselves some Vietnamese smoothies from wonderful Pho Hoa Binh where they use fresh mango and boba and where Merlin was in ecstasy over his (boba-free) strawberry shake.
Retrieved pizza. Went home. Excellent discussion with kids on way about the pejorative terms 'ho' vs 'homo.' Got home, kids went NOM NOM NOM NOM. Leelo tried to steal a lot of food from the cabinet where we now keep all happy ready-to-eat Leelo foods (he did this yesterday, too). But as he'd already had a sandwich and a croissant and a banana, I said no. He was not pleased. Lots of hitting himself, and me.
Shut garage can drawer and it broke right off the cabinet. Called handyman in panic, as that is where Leelo throws stuff away and would not be pleased to find it broken or to have to change his routine and use a different trash bin.
Into the pool! For a loong time. Arranged for expectant friend to come pick up last pile of baby crap in the house (changing pad, etc.).
Hauled kids out of pool. Expectant friend showed up and retrieved goods. Handymen arrived and fixed drawer in five minutes. Durr.
Merlin and Iz off to watch Raiders on DVD. Leelo wanting more food. What has Mali been doing all this time, anyhow? Poor thirdling. Mostly she's been playing with toys and games, because, unlike my other children, she can do imaginary play and/or amuse herself.
Ep arrives to retrieve her son.
Iz's Spanish tutor arrives.
Tired grumpy Mali gets plonked in front of a video. Leelo and I play with Thomas tracks and trains. Mali joins us eventually.
Iz's tutor leaves. We leave for Iz's San Mateo appointment.
Back home for dinner. I so heart leftovers on nights like these.
That's all dull, but what is exciting is that tomorrow morning we're going to take the kids riding bikes and rollerblading down at the end of Seaport, and then take Leelo to his first movie ever: Kung Fu Panda! Emma, who like Iz has already seen it will come with us, and Merlin and Ep will meet us there. I am really hoping that, with enough food reinforcements, Leelo will be willing to sit still-ish and we won't get kicked out. Wish us luck!
Posted by Shannon Des Roches Rosa at 12:37 AM
Share a Cookie by Cheryl Caruolo
Posted by Shannon Des Roches Rosa at 7:26 PM
Some offline friends of Lea's stepped in to cover the balance for the ticket. Thank you so much to J. B. Myers, S. Bass, E. Kusher, JC Meloni, L. Henry, and K. Snead for your contributions! Lea and I are in your debt.
Comic artist extraordinaire and plucky autism parent Lea Hernandez has a once-in-a-career opportunity at Comic-Con San Diego next month. Problem is, things have been rough, cash-wise, since she lost her family home to fire in September 2006.
She can't afford the airfare. Her Texas home town is a looong way away from San Diego, so driving would not be an option even if gas wasn't so pricey at the moment, as she can't take that much time away from her autistic son. But I am thinking and hoping that The Internet Will Provide. Please?
You have been so generous in the past, providing occupational therapy equipment for Leelo's school district, sending my teenage friend Amy on The Sojourn Project when her family couldn't afford it, and helping Iz raise money for Cambodian school kids. I hope I am not abusing your good will by sending out another request. But I am asking for a very good reason: Lea received so much support after losing her house that she feels she can never ask Teh Internets for help again, not ever. I had to talk her into letting me do the pleading.
If you are, like me, one of those autism parents fortunate enough to be able to provide for your children's needs, please consider making a donation. Any amount will help. And please feel free to forward the link below to any autism friends, sites, or boards you think might be receptive.
DropCash campaign page:
P.S. OH HAI campaign ends with the month of June.
Posted by Shannon Des Roches Rosa at 10:03 PM
First of all, he drew this. Himself!
Need I tell you what it is? That's right, people, Leelo can draw a friggin' car. He used to say, "Draw a car, Mommy," but I guess he's decided that he no longer needs the middleperson -- he can say "Draw a car!" and then draw the damn thing on his own.
More amazingness from Leelo during this past week:
Expressive Language (what he says):
• He recited the entire alphabet -- saying not only the letter, but also the primary sound it makes.
• "I want to play with my friends. I want to go swimming." (The girls were swimming with their cousins and Merlin during one of Leelo's home sessions, and he was not pleased to be excluded from the fun.)
• "It hurts. It hurts, Mommy," referring to the knee he has now skinned four times in the past three weeks.
• "Are you coming?" to Seymour, when it was time for all of us to get out the door for school.
• "Give me high five!" to Therapist R, after he completed a task.
• "I did it!" Now says this after completing almost any successful task.
• "Get your arm off! [Mommy snuggling in bed with him at 6:30 AM, trying to eke out a few minutes' rest insomnia bout = 2 hrs sleep]"
Even more gobsmackerrifc is his receptive language (what he understands) when I use casual, conversational rather than clipped direct therapy-style requests:
• "Leelo, go upstairs and get a new pair of underwear [from the lower middle bathroom drawer]."
• "Leelo, don't forget to throw that banana peel away."
• "Leelo, please close all those [four] closet doors [in the hallway] but leave the bathroom door open."
• "You're going to need to scrub harder to get all that crayon off the counter. Use some powder [Bon Ami]"
And the thing you have to understand about Leelo is, despite how crazy-making his new violent tendencies are, he remains in his heart a sweet, affectionate boy who absolutely adores his family, and who likes nothing better than to snuggle on the couch during a family-time viewing of Spectacular Spiderman. Until his tactile defensiveness switch gets flipped and he doesn't like the snuggling anymore -- then a non-vigilant person might get smacked. But his soul is kind and sociable. He just needs our help to interpret and manage the cross-wiring between his intentions and his impulses.
Posted by Shannon Des Roches Rosa at 9:05 AM
BETA (Behavior Education Training Associates) maintains a great site for information and advice on topics from collecting data to eliminating toilet accidents.
As the person who initially sent the link to me commented, if you have or work with a child on the spectrum, it is worth your time to read through this site. I imagine it would be especially useful for families contemplating or running their own behavioral program.
Posted by Shannon Des Roches Rosa at 2:52 AM
A number of my friends are in the same position, so we are trying to think of outings we can take our kids on, places where successful day trips are at least possible if not guaranteed, and where the risks for our bolters and accessibility for our limited mobility kids are considered. And where Leelo has enough space and things to engage him to distract from his hitting impulses. I am thinking SF Zoo, SF Arboretum, possibly an early Santa Cruz beach day?
I also think that everyone should just come over to my house and go swimming or whatever you would call what most of our kids do in a pool. Wednesday morning and Friday morning are particularly good. HINT HINT.
Posted by Shannon Des Roches Rosa at 5:09 PM
Back to feeling like one of the luckiest people I know. Have you met my husbands, kids, friends? Have you seen my awesome house, neighborhood, town? Did you take a look at the souls in the IRL column on the left? I try very hard to keep my good fortune and the outlook that should accompany it at the front of my mind.
I am writing from the side of the pool, via my trusty laptop and wifi, while watching my two youngest bounce in our own pool. The pool is shady but the day is warm and my deck, with its garlands of pepper trees, jacaranda, and matilja poppies, is breezy and delightful. I can see Hoover Tower as I type.
Iz will join us in a minute, after she closes out an episode of The Simpsons, the viewing of which is a reward for cleaning up after Mali ferreted out and exploded a box of band aids.
This morning I had coffee with my friends and my auntie. We laughed a lot. They told me that I am a scary person to confront. I told them that I see myself as a friendly puppy. They laughed even more. Jo and JP couldn't make it, but hopefully they'll be there next week. Then again, Summer starts in two days, and all of our schedules will unfurl in unpredictable and not necessarily interlocking patterns.
Mali is throwing diveys into the pool, and Leelo is retrieving them. Leelo came over to deck Mali, I told her to run away, and she did, for the first time. Lots of praise for Mali! And no one got hit!
After coffee, I took my auntie to get our toes bespangled. Really, I should be cleaning my house and working, but it was also my last free morning of the year with any wiggle room whatsoever. My last opportunity to give into the spontaneous and the frivolous. How many people even have that choice? My toes are now blingity-bling gold. The woman who sat on the pedicure throne next to me was a dancer, with a dancer's body. As we chatted amiably, I realized with a snort that in that case, I must be a writer with a writer's body.
Iz is here now. She accepted with good humor my denial of her request to swim naked, as our neighbor's windows overlook the swimming hole.
After toes, I went to get chocolate for Badger, whose birthday I'd neglected. Ep was in the parking lot, and we chatted about the success of Merlin's school year and how much he loves his teacher. Then I retrieved the girls from their respective schools, and delivered the goods to Badger's office. While basking in the air con, we got to see both my dear Jenijen and her boss. If La Stone ever decides to hold a seminar on interpersonal skills, diplomacy, and how to make people fall in love with you instantly, I will be there.
Mali is now bundled up in a towel that she retrieved from the closet herself. Leelo got his own towel, too. Iz, who came out here on her own and who is still learning the practical aspects of self-reliance, is up the creek.
Piano practice for Iz. Her instructor gave her some sheet music to take home and copy. Its notation makes sense, but as the title is in Russian we don't yet actually know the name of the tune she's playing. It is beautiful, though.
Iz, bobbing in the pool, says she can tell how much she has grown by comparing the position of her nose to the surface of the water and her tip toes. And if I want to see something amazing, she can hold her breath underwater for a count of six.
The girls drank too much juice. They can't make it all the way home from piano practice without stopping at Jennyalice's. And only Jennyalice's. Our friend let us in for two impromptu pit stops and five minutes of back-and-forth braindumping, reminding me why I only make friends with people who kick ass.
Leelo just took off his trunks and rashie and tossed them on the side of the pool. "He's really skinnydipping now!" says Iz. Mali wants to deposit her cold wet bottom on my lap. Nyet. I tell her to examine one of the mummified lizards our cats keep stored on the back deck.
We arrive home. I could clean up the house and do laundry, or I could give into the moment and the kids' requests, and let them go swimming.
I give in.
Posted by Shannon Des Roches Rosa at 5:52 PM
Oh yeah, it's the fact that Leelo might take someone out at any minute. Whole new layer of stress beyond the special needs kid stress, which has long since metamorphosed into mama bear fuck-you righteousness anyhow.
I'm thinking back to the days when I would be perfectly comfortable as the only adult supervising an overnight backyard camping playdate with Eliz, Sophie, Violet, Fifi, and Iz, while also watching Leelo and baby Mali, making buffalo meatballs & spaghetti dinner from scratch, all while Seymour was away at a conference. How did I ever do that? And when did I become so small and weak? Or is this just what I look like in the morning before coffee?
Aaaigh, late for Bad Moms' Coffee. My auntie is coming today!
Posted by Shannon Des Roches Rosa at 10:00 AM
Alex Barton ostracization fiasco.
Inclusion requires extra work from both parents and teachers. It requires mindfulness and diligence. And can result in the kind of children we all wish we had, the kind who choose a special needs classmate as their homecoming queen.
Posted by Shannon Des Roches Rosa at 9:24 AM
physically imperceptible seizure activity fogging up our boy's brain. And also the migraine-like episodes he's been having for the past few months. This what I took away from our discussion; my notes should neither be construed as medical advice, nor as a verbatim transcription.
She does not think Leelo has Landau-Kleffner (nor do we), as it is usually detected late -- around age three -- and by Leelo's age we'd generally be seeing significant seizure activity. But it is also not something that can be ruled out by the comprehensive genetics panel we had done on Leelo four years ago, as part of his Stanford Neurology Grand Autism Diagnosis Tour. And a definitive diagnosis requires a 24-hour EEG session. Not happening any time soon.
An abnormal EEG doesn't necessarily mean seizures are happening. The "spikes" in Leelo's EEG means that he is at risk for seizure activity, not actively seizing. Even if he was having seizures, there is no guarantee that a seizure will actually happen during an EEG. EEGs are done using surface electrodes, and as such cannot really pinpoint any specific area of the brain. She said EEGs are like trying to determine the activity of fish in the sea via buoys on the surface. Sometimes a whale surfaces and you see specific, measurable activity; otherwise it's hard to really know what is going on below the waves.
Most doctors will not use EEG abnormalities as a basis for treatment unless they are accompanied by documented seizure activity. So, unless we are seeing regular seizures, it is in her opinion risky to start trying seizure medications, as the goal in medicating seizures is to strike a balance between the gnarliness of the seizures and the gnarliness of the meds. Medications might even put him into the brain fog we were worried about and for which we currently have no evidence.
Evidence is important, because no one really understands how or why seizure drugs like Depakote or Lamictal work. And their side effects are can be horrible (liver damage, unusual bleeding, hallucinations, life-threatening skin reactions).
Leelo's absence episodes are infrequent enough that she does not recommend experimenting with potentially detrimental 2x/day medications on our non-compliant boy. And absence episodes are usually not indicative that other types of seizure activity is happening. However, if they do start to happen more frequently, then they should be treated with medication to prevent kindling, i.e., a seizure frequency snowball effect.
As for his migraines, we should first try a Tylenol/Ibuprofen cocktail taken as soon as we see any symptoms. We need to be vigilant; fast and early treatment is critical. However, the Tylenol and Ibuprofen will not be as effective if he has been using them a lot recently (he is currently getting Tylenol 1x/day for a back-gum-perforating new tooth). Overuse of them is similar to coffee abuse; they are not as effective day-to-day, and going off them can cause a rebound effect.
Conclusions: We don't need to do anything except be aware of possible future seizures and migraines, document both, and treat migraine symptoms as quickly as possible.
The best part of the appointment was at the end, when Leelo refused to leave the office without getting an exam on Dr. Sheyenne's exam table. Because that is what you DO when you see a doctor. Then Seymour took Leelo to school. And I went home, feeling satisfied that we had investigated the seizure avenue, disappointed that our boy and his brain mystify so many people, and relieved to not have to wrestle with that boy so as to introduce a new medication.
Posted by Shannon Des Roches Rosa at 12:02 AM
"Friends listen regardless of their own deal, not while waiting to talk about it. Friendship is neither a game of tragedy-trumping nor one of altruism. It is about being mindful of the people you care for."To have friends, you have to be a friend. That is the way it works. And I feel grateful to have so many good friends in my circle, grumpyfucked as I have been lately.
Posted by Shannon Des Roches Rosa at 12:44 PM
Google docs spreadsheet, which we share with his entire team as well as with interested family and friends.
It only takes a few minutes each day to fill out the record. It has been an invaluable tool for information sharing amongst Leelo's team and fans, and also for providing fast, hard evidence of how well he learns and how much progress he's made when I start fretting that things aren't going so well. And, best of all, a daily record on Google Docs is free. I heartily recommend setting one up, if you haven't already.
Here are the factors we track for Leelo, with examples from yesterday:
ROUTINEWe also include categories for SCHOOL and HOME NOTES. I fill out the SCHOOL category from the daily communication notebook his teachers send home, and his therapists fill out the HOME NOTES section.
Haircut which went well, Therapist A 1 - 4, swimming with dad, Dinner with mom & dad at Sewerage (favorite restaurant), late evening play at friend's yard with jumpy house.
Loose tooth bothering him, skinned his knee badly. Otherwise healthy.
Up at 7, to bed at 10 PM. In general has been getting up very early and going to be late for the past week. Tooth pain?
cod liver oil, Naan bread, veggie booty, croissant, PB&J, lassi, stolen soy yogurt, cheerios
claritin, tylenol meltaways for his toothache
I want more lassi, please. Mommy, put it in my hand, please. Get off the couch, Mom. Squid Q: Where do we get naan bread? Leelo A: Sewerage! I need to go to the potty (in the middle of eating naan!)
Girls were gone most of the day [bless you, Jennyalice & Descartes], Leelo demonstrated that he would be a very content only child. Fantastic happy swimming with dad in the afternoon, best possible boy at Sewerage with only mom and dad. Good playing at a friend's house [Jennyalice again] in the afternoon when picking up girls until he fell and badly skinned his knee; it bled a lot and he was very upset but eventually tolerated wearing a bandaid for the very first time! Not hitting girls as much.
Interrupted meal of favorite food in world (naan) to announce that he needed to go to the toilet, and did so successfully -- pee and poop. One pee accident in a friend's jumpy house (overstimulated, understandable), but even so ran to their potty spontaneously and not only finished peeing there but was able to hold his poop for the potty and put it all there.
If you'd like to set up a daily record but need more specifics, feel free to contact me. (I finally put Email and About links over there on the left.)
Posted by Shannon Des Roches Rosa at 11:35 AM
one of the funniest food writers in San Francisco.
My daughter can't wait to make peanut butter muscle bombs with her beloved godfather.
Technorati Tags: food writing
Posted by Shannon Des Roches Rosa at 3:05 PM
Every day for the last six months I have told myself that, if things get really gnarly and I don't feel like I can get through the day, perhaps I'll pilfer a pick-me-up from that stash.
But I haven't. Not once.
So, no worries. But thanks for all the kind thoughts. Nice people, you are.
Posted by Shannon Des Roches Rosa at 1:50 PM
So, I'm reaching back to my original people, the Catholics, for some advice on dealing with caregiver exhaustion (the article is for children of aging parents, but the advice really does suit most any 24/7 caregiver).
It is jolting to see myself reflected back in every bullet point. I don't like seeing my friends reflected back, either, but that is our reality, and we could all use reminders about our worth and roles and pressure release valves.
In the meantime, my Anglo-Canadian stiff-upper-lipped facade is cracking. I have tried to reach out to a few people to let them know that, ya, I really am depressed, but they either laugh to demonstrate appreciation for my ironic attempts at mood-lightening, or make awkward excuses to leave the conversation. Which is understandable, as I myself find the situation distasteful. What kind of loser wastes two successive weeks' babysitting nights by taking to her bed? I'm sure I'll snap out of it. Soon.
Why? Because reasons for optimism are on the horizon. We are meeting with Dr. Sheyenne next week to discuss Leelo's absence episodes and the possibility of seizure meds. (Yes, we have skewed perspectives in the special needs parenting world; I doubt many other parents would be excited about opportunities for medicating their child.)
We will also meet with Therapist E, who specializes in aggressive behavior and behavioral, non-violent, non-medication-based approaches for quelling it. We think our families may subsidize a long-term consult. If so, I will record our approach and progress in detail, in case anyone else needs help understanding and redirecting the dangerous behaviors of their aggressive partially verbal autistic children. And if you know of online resources or blog posts regarding autism and aggression, do cite.
Also, Seymour and I talked. We are both freaked about my horrible afternoons alone with the kids. Leelo cannot be anywhere near the girls without trying to hit them. Much of his aggression is behaviorally based, but how do you tell a three-year-old not to scream when her brother walks by because it only encourages him? Modifying Seymour's work schedule is not an option even though he offered; his job is stressful enough without additional time constraints.
Afternoon purgatory is, thankfully, one problem that can be fixed by pouring money on it, by getting an extra adult body in the house for those few hours until Seymour gets home. Where this money will come from, I don't know. But I will baldly state that I am available for editing and content development work.
Dan Moreau's French Lessons, is about being the new kid at a French school in Bangkok, Thailand. It is a good tale, of course, with plenty of what have apparently become characteristic CISWY cringe-worthy moments.
It also contains a section in which the author chooses not to befriend a child even more outcast than himself, a child who may very well have needed an IEP in a different time and place. Am I reading too much into it? You tell me. But as Can I Sit With You? is in part dedicated to improving social attitudes towards special needs kids, I have to wonder if that carefully avoided boy was more than just bigger than his peers.