TweetThe nice folks at Bee Tees sent each of my three kids shirts. I'm not sure if they did so because they read this blog and thought my sometimes cantankerous trio could use good behavior reminders, but the shirts are cute as hell and my kids think they're great.
I especially appreciate a kid with autism like Leo getting to run around town with a t-shirt that declares: "Bee Yourself"! And the fact that the BeeTees folks also do custom Bee-Cause designs for fundraising. SEPTAR could certainly benefit from a design option you might easily guess.
Big sister Iz swiped his shirt later on. She says she's the one who is entering middle school in a few weeks and needs tools like a "Bee Yourself" shirt to remind her about priorities and bucking peer pressure. Her shirt actually fit him better, so I didn't mind letting them swap.
Mali got the same shirt design Iz was supposed to wear, "Bee Sweet." I think it's appropriate. Mali has full-tilt Defiant Little Sister Syndrome, so anything that reminds her to be nice is appreciated (Bee Kind, Bee Happy, and Bee Good would also be options; as her mom I consider Bee Unique self-evident).
Iz complained that Leo's the one who needs the Bee Sweet shirt anyhow, as he's been going after his little sister again. I let him wear it not because of her griping but because most eight-year-old little brothers could use such a reminder. Plus at Leo's team meeting today, we had two main discussion points: 1) How close he's getting to reading -- we think he might be doing some real work by the end of the year, in which case shirts with one or two words on them can help reinforce reading skills, and 2) The importance of using very firm and direct language and a commanding tone of voice with him when he misbehaves, to help him understand when he is doing something that is not okay. If we want him to be sweet, we have to be firm.
Regardless, these are truly very cute shirts, and I'm glad to know about them before the holiday shopping season starts. I know quite a few kids who could use or would appreciate them. And I might just get a Bee Unique shirt for myself.
The kids and their BeeTees in front of a bee mural at the BeeKind apiary products & supply store in Sebastopol.
TweetThe nice folks at Bee Tees sent each of my three kids shirts. I'm not sure if they did so because they read this blog and thought my sometimes cantankerous trio could use good behavior reminders, but the shirts are cute as hell and my kids think they're great.
TweetI appreciated Salon movie critic Andrew O'Hehir's unsentimental review of the new movie Adam, in which a man with Asperger's embarks on a romantic relationships with an NT (neurotypical) girl. The following passage stands out, and demonstrates a sorely-needed respect for my son and his peers, as well the adults who share the autism spectrum with them:
"Autistic and Asperger's characters in movies are only beginning to move beyond the "Sidney Poitier phase," in which members of previously despised or misunderstood minorities are presented as symbols, saints or seers -- whose most important function is to provide other, more relatable and "normal" characters with the opportunity for moral and spiritual growth. African-Americans, gays and American Indians have already enjoyed this dubious cinematic-shaman role, which is undeniably superior to old-fashioned bigotry but a long way short of actual equality."A long way short of actual equality, indeed. Mr. O'Hehir has my thanks.
TweetToday's a BlogHer post day. I wrote The Worst Parenting Day Ever? about how attitudes affect parenting, exemplified by how I chose to perceive a day with my son.
The BlogHer post was also written as a reaction to an Age of Autism bitter, rage-filled account of what a parent considers autism to have done to her daughter, and her own life. The parent wrote,
"[My daughter] is dead. That [girl] is dead, and I don’t care if people hate me for saying that because that’s how I feel and that’s how I will always feel and there is no closure and there is no comfort just because she can talk now."The empathetic BlogHer part of me first cheered for the daughter who can talk now, then wanted to hug the mom in so much pain. I want that mom to meet people from parenting communities like mine, so she can observe real people who have carefully maintained their and their children's dignity, even though like her they have parented through situations most people won't willingly contemplate -- including having their children with special needs actually die. That mom needs to hear from, learn from parents who believe in sanity-saving catharsis between friends, but who remain otherwised focused on loving, respecting, and helping their children. Let's cross our fingers that she soon finds the hope and compassion she so needs to change her attitude and let herself love her daughter.
The lioness-mom part of me -- the one who writes here in my personal blog -- was disgusted by the post, and also at Age of Autism for further corroding that mom's soul and undermining her emotional stability by publishing such child-abusing vitriol as "honesty." How DARE such people call themselves autism advocates, sell themselves as helping our children! Who and how exactly is that hatred supposed to help?
By publishing a post in which a parent declares their autistic child to be dead to them, Age of Autism has disrespected our children and indeed anyone with autism to the ultimate degree. They have outed themselves as the Vampires of Despair, whose only interests are bleeding the autism community to sustain themselves, and luring converts to their distasteful mindset by whatever tactics necessary. This is exactly the kind of cultivated nastiness recently decried by Orac at Respectful Insolence, who writes of such attitudes:
"It is a view of autistic children that dehumanizes them. They are portrayed as "toxic," "damaged," poisoned," and "lost," among other things, with stories of the "light going out of their eyes" after a vaccination."The Age of Autism author -- who received kudos galore from parents only too glad to spew additional negativity about the children who depend on them -- says she doesn't care if people hate her for saying that she considers her daughter to be dead. I wonder if she realizes that those haters may include her own two typical children, who will likely one day read what their mother has written about their sister; and her daughter with autism, since people with autism are often more aware of what is going on around them than their communication skills reveal. What if that not-dead girl eventually reads what her mother wrote about her? (Though I hope it never happens; I hope AoA pulls a Generation Rescue and scrubs the offending material off their site.)
Reading the My Daughter is Dead post made me wish that parenting came with a legal vow, or an Unbreakable one, based on a common marriage vow:
Do you, [parent], promise to love, respect, and protect [this child], in good times and in bad, in sickness and in health, so long as you both shall live?I consider this vow to be implicit, a reminder that as in marriage, no one can anticipate the joys or challenges parenting will bring, or guarantee perfection. The parent who wrote the Age of Autism article needs to disengage from the vampires, find a more positive community, revisit her parenting priorities, and remember that protecting one's children includes protecting them from the worst of one's self.
TweetI really should have posted about Kristina Chew featuring The Autism Corps on Autism.Change.Org two days ago, when the post first went live. Kristina gets why the Autism Corps idea is so important, because her son Charlie is similar to Leo in many ways -- both of our beautiful, smart, boys have the kind of autism that requires supervision and support all day long, every day. I am grateful to Kristina for putting her shoulder to our idea.
I didn't post immediately because Leo is out of school from now until August 31st, and I'm fully immersed in the structured and intensive parenting required to help my son navigate all his free time, necessary to let him anticipate his day, and critical for keeping him from getting disoriented or upset. Leo's parenting takes precedence over my blogging.
Don't misunderstand me -- Leo and I are having a good time, hiking and swimming every day, and Leo is as happy as a boy whose communication challenges make him completely dependent on others can reasonably be. I'm not a champion organizer or a fast writer, so right now parenting, hiking, and swimming are about all I can do without siphoning from the sleep reservoir -- which I swore I wouldn't do during Leo's summer gap. It's not fair to Leo (or his sisters, or my husband) to spend weeks coexisting with a grumpy, enervated zombie.
And this zombie is one of the lucky ones. Seymour and I share parenting duties, and he's even been letting me have some extra morning time, because he knows that's the only free time I'll get until the kids go to sleep. Leo receives twelve hours of respite each week (he probably considers it respite from me during the summer gap), which I try to split between parenting the girls, working, and making our house less hovel-like.
If I have all that support and back up and I'm this tired, how must the parents who don't have shared parenting and respite be doing? I'm guessing they could use something like The Autism Corps. I know I could. I know my co-conspirator Jennyalice could. I know Kristina could, as could many adults on the autism spectrum.
Please, don't forget to sign the Autism Corps petition:
And if you're a fan of Kristina & her blog partner Dora's work on Autism.Change.Org, please let the Change.Org people know. Autism.Change.Org is an unparalleled source for autism news, perspectives, information, and advocacy -- there is nothing like it in the Blogosphere -- and its loss would be a blow to our community. Take action, write in, direct message the Change.org people, support Kristina and Dora, now. Thank you.
TweetOur 3.5 cats are specialists when it comes to their prey. Lucy, who will eat our food but won't come in the house and so is only half ours, slays rats. Shia likes to dismember bunnies. Medianoche is a lizard-dispatcher, and Pat takes out birds (or used to -- he is now an elderly gentleman and so lets Shia patrol his turf). They leave their devotional daily kills on the backyard picnic table. These offerings are increasingly gruesome.
Recently the mother of one of Iz's friends visited for the first time. As we were doing the obligatory tour of the backyard (ooh, look, the red-roofed tower, yes if Iz goes to that university we will communicate via semaphore, laugh track), we found that Lucy had left a rat on the picnic table. Nasty and embarrassing enough, except Lucy is also going through a Jack the Ripper phase: the rat was lying on its back, intact unless you count its disembowelment, and its innards had been carefully placed next to it on the table. It was a blast-furnace day, so the rat even came with stench, as did I'm sure our first impression on that nice lady.
But I have a plan. I'm going to channel my teen goth past, embrace the spirit of both Awkward Family Photos and the scraper sites that keep stealing my BlogHer posts, set up an ad-filled blog, and post a daily offerings photo. I just need a name, something that will appeal to both black-fingernail-wearing aficionados of Faces of Death, and cat lovers. As naming is not my forte, I'm open to suggestions. A Certain (Feline) Sacrifice? Faster Pussycat: Killed Killled Killed? What say we all?
TweetThat is what I am doing right now. Looking for gold clothes for Mali, because gold (shiny gold like Flavor Flav's teeth, not goldenrod) is her Very Favorite Color, and I've never seen gold kiddie clothes that aren't costumes or formal wear.
Example of gold-loving: When Mali and I recently visited Leo's godmother Hayley, she took us on a tour of the lot where she works. A music studio covers part of the lot, and is in fact where We Are the World was recorded. While I was studying the giant framed WATW photo on that studio wall, wondering if Steve Perry and Harry Belafonte got to talk to each other and if so what did they say, Mali ran into the swanky waiting area across the room and promptly blew out its chunky candle.
"Mali!" I chided, "We do not blow out candles without permission! But ... I suppose you might as well make a wish."
Mali closed her eyes and clasped her hands tightly in front of her chest. "I wish for ... a UNICORN!" she whispered, as loudly as she dared.
Fantastic-creature-loving Hayley's chest swelled with pride. Then Mali added, "A GOLDEN one!"
Hayley's chest exploded.
Mali's gold-lust, once admitted, has not abated. Our girl, she wants some gold. Surely Etsy will have something for her. Surely.
TweetIn our house, books are scattered across every surface, bookshelves line the walls, and tottering book stacks lie next to each bed, bath, and commode; we revere the written word, and those who are its alchemists. So I respected Vicki Forman the author long before I came to know her as a literary-award winning friend.
Both Vickis are wise, generous, frank, eloquent, tough, and not afraid of confrontation -- even if that means confronting themselves. What a pleasure to get to know them. And now, through Vicki's "Memoir of Premature Motherhood," This Lovely Life, that pleasure can be yours as well.
The best way to take advantage of this opportunity is to buy your own copy of This Lovely Life. If you're thrifty (euphemism) like me and prefer to enter Vicki's twitter/blog contest to win a signed copy instead, please do so, quickly.
If you want the author herself to compel you, then attend one of her readings (her Bay Area Book Passage reading is August 6th, and you'd better believe I'll be there), read her This Lovely Life website author Q & A, or ... read my BlogHer interview with her. (Get tissues. Her eloquent and honest responses to my questions had me crying at a workstation in the public library.) Here's an except:
I've had the pleasure of knowing Vicki since we both spoke on the BlogHer 08 panel, Blogging About Our Children With Special Needs. Here is what I had to say about her at that time, and it still rings true:
SDR: You spoke about medication and taking sleeping pills, about grief, about it distracting you to the point where you had a couple of fender-benders. Did you see a therapist? Why or why not? Do you have any advice for parents processing the reality of a medically fragile child?
VF: The day after I gave birth to the twins, I returned to the therapist I had not seen for nearly a year. I stayed with him from that day on until six years later. I could not have survived without his help, and that of medication. It was never even a consideration that I would do it alone, or without support. I’m fortunate in that I have never felt shame or guilt about needing help, and that my family has always been by my side.
Being the parent of a medically fragile child or a very premature child or disabled child is possibly the loneliest and most devastating experience a person can have. Nothing in life prepares you. I think parents often feel they have to be strong for their spouse or other children, but this becomes a burden in itself. I heard a story that Barbara Bush lost a daughter to leukemia at four years of age. After her daughter died, she retreated to her bedroom for a year. If Barbara Bush can disappear to bed for a year, how can any of us expect to do any better? Honestly, the best advice I can give is not to judge yourself, get help if you can, and allow every emotion to play itself out. There is no right way.
I was excited to finally meet my co-panelist Vicki Forman. She lives and breathes and writes (and teaches) literature. She has the strength and talent to describe her own harrowing parenting experiences without resorting to melodrama, or detachment. She is a role model for any person with writerly aspirations.Her own take on our friendship is witty & magnanimous. I'll share jalapeno-studded potato chip tuna fish sandwiches with her any time, especially if we can openly dual-tweet it while discussing which rum makes the best Cuba Libres.
She is also raising a strong, independent preteen girl in our body image-obsessed and materialistic society, and I wanted to get her advice, wanted to ask how she innoculates her daughter against toxic media messages. Her response: she surrounds her daughter with strong, principled, women; with role models.
Vicki's son Evan is the catalyst for This Lovely Life and the reason she and I met, yet I never got to meet him -- he passed away suddenly, one week after our panel. But Vicki has shared so much of her son with us, both in This Lovely Life and through her Special Needs Mama column on Literary Mama, that I am on my way to understanding her assertion, "He was my greatest teacher and I am honored to acknowledge that gift with this story."
Thank you, Vicki, for opening your gift to the rest of us.
TweetJen and I are so pleased to announce that adults autistics Rachel Cohen-Rottenberg and Lindsey Nebeker have agreed to work with us on Autism Corps strategy, and to meet with Michelle Obama should that portion of the campaign come to fruition! (Please sign the petition if you haven't already.)
- Rachel is a writer, singer, artist and community volunteer, as well as the author of Asperger Journeys. She did not receive her Asperger's diagnosis until mid-life and so is keenly aware of the challenges unsupported people with autism can face in their lifetime, and the specific challenges autism brings to older adults.
- Lindsey, a young pianist and composer who has been profiled in Glamour Magazine and on Good Morning America, is both the partner and sibling of adults with autism, and so understands adult autistic needs on multiple levels. You can follow Lindsey on Twitter at AutismIsARose.
And finally, we've started a Facebook Group to support the Autism Corps. Please join, and ask your friends to join.
Thank you, Rachel, Lindsey, and Terri! And thanks to everyone else who continues to show such postive support for this movement, and for the autism and autistic communities in general.
TweetI enjoyed our recent trip to Southern California. Mali and I traveled down separately, and broke the road trip in two by having lunch with Seymour's Fresno-adjacent aunt and cousin (she's actually a first cousin once removed, but my husband's Portuguese family does not make distinctions between the various degrees or strata of cousinhood).
Then Mali and I went to Hollywood, and were given a personalized tour of the studio where Leo's godmother produces kids' TV shows. I got to take a picture with a real Skeksis! The various talented and kid-loving creatives adored Mali (who had turned her personality meter to 11) and made her custom character drawings and gave her show-related toys. Then we had dinner at Versailles (NOM) and got to meet the newest Rosenberg girl baby (CUTE).
In the morning our friend Skip treated us to a Westwood breakfast and recent medical media gossip. I then had lunch with Roo and Linda at Mexi-Casa in the O.C., and got to marvel at how well my friends are taking care of their health despite everything else that's going on in their lives. (The gym is a valid priority. Who knew?)
Then to my mom's house in San Diego where I saw Iz for the first time in almost two weeks, and got to also hang out with my mom, baby brother, and teenage niece Nicole. The six of us had three days of lazy beach dazing and Fair-going, cooking and socializing.
Then Seymour and Leo arrived, via the much-crowed-about successful one-way SJC-SAN flight. Seymour said that Leo had had a great week, temperament-wise, so we decided to take our entire group of eight straight from the airport to a local locals' Mexican restaurant.
Leo wasn't pleased to be trapped in a car with bickering sisters after a two-week break. He was less pleased to arrive at an unfamiliar restaurant, and started to make unhappy noises. I realized with growing panic that it was lunch time at a busy seat-yourself restaurant, that most of the tables were full, and that seating an octet would be a challenge even during a slower time of day.
Then I spied a table for eight in the back corner. There were two young women seated in the middle chairs, but they were next to an empty table for two. The restaurant seemed like the kind of neighborhood place where people would naturally rearrange themselves to ensure everyone who needed a seat got one, so I grabbed Leo and walked over to the two women, and tried not to look too wild-eyed as I asked, "Hi, excuse me, but would it be okay ... we have a large party and were wondering if you would mind moving to that table for two? We'd be really grateful."
The closer of the young women swiveled her head around, putting me face-to-face with a strain of SoCal vapidity I'd almost forgotten about:
"Yah, well, you know, we're kind of really in the middle of eating right now? But maybe you could sit next to us if you want?"Eight people in the spot for two people? Really? Fine.
My family stalled, not being able to fit six people into the available seats, while I sat Leo down next to her -- though not so close as to imperil her -- and started taking out some of his activities and snacks. He was not impressed and started hitting his head. BAM-BAM-BAM.
She looked horrified and leaned further away, not understanding, I suppose, the nuances differentiating a tantrum and a meltdown. I apologized in faux-saccharine tones and switched places with my son. Then my not merely socially-enabled but charming and handsome brother asked the women one more time if they wouldn't mind switching tables, and the two practically jumped over the aisle into the empty seats. My brother transferred their trays with a smile.
I smirked. Because you know what? I am all done with people who refuse to help others -- whatever the need -- because they just don't feel like it. We need to be better than that, and if some people need slight unpleasantness to motivate ultimately positive behaviors, so be it.
Leo settled down once we arrived at my mom's house. The rest of the trip was the best vacation our family of five has ever had: beach excursions, walks, family meals, and Independence Day fireworks. Leo remained chipper.
We had another mid-trip lunch on the road trip back -- this time with my L.A.-based brother- and sister-in-law and their trio of girls. My BIL loaded us up with fifteen pounds of his custom charcuterie (we have since been swooning and sighing over and nibbling on eight different cured meats varieties, bacon included). I got to hold my new niece a lot a lot, and my SIL showed me the fantastic new fenced playground and bluff-top walking path in her neighborhood. I think we might be able to bring Leo back there. Another full-family trip option.
We hit sticky I-5 traffic as it was the last day of a holiday weekend, but Leo somehow maintained his cool even as the girls devolved into stereotypes, whining "Are we there yet?" every five minutes. I did not again need to get passive-aggressively self-righteous on any other strangers. Which is what I prefer.
We welcome feedback from all families affected by autism, and from autistics themselves. Would four to fourteen hours of one-to-one support make a difference in your life? You can comment below, or even better leave a comment next to your signature on the petition.
"We would like to propose that Michelle Obama meet with Shannon Des Roches Rosa and Jennifer Byde Myers, two parents representing two different autism families' perspectives, and Rachel Cohen-Rottenberg and Lindsey Nebeker, two adults on the autism spectrum, to discuss creating an Autism Corps so as to address one of the most pressing needs of autism families and adult autistics: one-to-one in-home support.Please forward this post to anyone who might be interested.
"We would like to discuss taking those three factors and combining them into a nationwide organization dedicated to training volunteers to aid kids and adults with autism: an Autism Corps based on the Teach For America urgent action model, with the goal of providing autism families as well as adult autistics in need with between four and fourteen hours of weekly care."
TweetI'm not sure why I said I would write this post earlier today. I needed to get Iz to camp, get Leelo back home and ready for the schoolbus, take Mali to swimming lessons (which she uses to hone her comedy routine, not learn water skills), and then pick up her friend Lucy to distract her with imaginary Sparkle Puppy Super Veterinarian scenarios. Thinking I could do anything beyond kid-prep and chauffeurring and popping out some tweets was poor planning.
Still, no harm done. We are having a relatively mellow summer week and blogging is an elastic medium. But last week's San Diego trip with Leo? That was planned, examined, tweaked, and replotted until we had accounted for every detail we could anticipate. Planning was what made that trip with my boy and his autism possible.
And it worked. Leo was a star on his visit to San Diego. He cheerfully tolerated the flight down and the marathon road trip back (he was a much better sport than his Bickerson sisters), and was mostly happy and content to stay at my mom's house.
Here's how we prepared for our boy and his autism to have a successful trip away from home:
1) Do a Local Trial Run.
Leo and I recently spent one, experimental night at a hotel. I chose a location (Sebastopol, two hours away) that was close enough to turn tail and run home if we had to. We stayed at a hotel because I didn't want to risk interrupting family or friends' sleep. Leo did not have a problem sleeping away from home (though he did have issues with the pool not being open at 7 AM), and we had evidence that successful travel with our boy was indeed possible.
2) One-Way Flight the First Time
Leo and Seymour flew Southwest, which has an official policy of pre-boarding kids like our son. Leo enjoyed the flight down, but if he hadn't then we didn't want to worry about flying him back. Our destination was a day's drive away; I took the car down ahead of time and met Leo and his dad at the airport, and we all drove back together.
3) 48 Hours Are Plenty
We didn't want to push our luck, or stress Leo out with a long trip. A short, two-night visit seemed like the best way to succeed -- and indeed, it was. Leo got to have plenty of fun before coming right back home to his regular routine. We might try a longer trip in the future.
4) Choose a Destination With More Options Than You Think You Need
My mom's place is an ideal vacation spot for Leo, and I wouldn't take him anywhere that didn't have a similar variety of options. We could walk to one beach, and drive to several more. There is a hiking path out the back door. A nearby park has swings and a slide. There is a wonderful waterfront for taking walks when Leo goes into dawn-greeting rooster mode. There is a porch swing for Leo to chill out on if he gets overwhelmed and needs a quiet space. We rarely had to worry about how to keep him happily busy.
5) Stay With People Who Will Help You
Traveling with kids who need 1:1 supervision can be exhausting, even if those kids are good-natured. So we stayed with relatives who were happy to hang out with our boy in short stretches. If we attempt future non-family trips, I will research local special needs babysitting options in advance, so we can have a small bit of respite. As much fun as we all had, if my mom and brother hadn't pitched in occasionally, we'd have been exhausted.
6) Rearrange Accomodations As Needed
Leo loves my mom's house, but he simply cannot sleep in her guest room. It is too bright, and its location on the top floor makes it too hot for him during summer nights. Leo was up by 3:30 AM on his first night, which had us worried that he no longer tolerated sleeping away from home. But once I pleaded with everyone in the house to play musical beds and he got to sleep in a dark cool room on the ground floor, he slept through the night. *Whew*
7) Bring Lots of Engaging Activities
Leo currently enjoys dot-to-dots, mazes, matching activities, etc, and he likes to do the same activity multiple times. Instead of buying several of the same activity book, I made copies of their pages to tuck in every backpack and bag we brought with us, and laminated other copies to use with dry-erase markers. And I have mentioned these multiple times (and am not employed or compensated by their producer), but the My Busy Kits are a great idea -- lots of sensory, tactile, and open-ended activities, good space-savers, and all three of my kids love them (Leo was the focus of our trip, but he does have sisters). No matter where we were, we always had something with which to engage our boy.
8) Plan Time-Consuming, Self-Directing Excursions
The shore walk mentioned above takes at least an hour. Going to the beach takes at least two. Leo needed supervision but was otherwise self-directed during both. During these activities, my and Seymour's energies were able to shift to lower gears. Plus we enjoyed the swimming and walking as much as Leo did -- I was positively giddy to see my entire family having a good time in a crowded public beach.
This was the first full-family trip we'd taken since Spring 2008, when Leo exploded in the SeaTac departure lounge. We pretty much gave up on traveling with him after that, which is why I am so excited about last week's success. I almost can't believe Leo was such a happy and willing traveler, but am so, so grateful.
We may not be the globetrotting family of my pre-parenting dreams, but I'm tentatively hoping to resume traveling on our previous scale (before Leo's rough behavioral patch, he'd been to Hawaii, Seattle, Southern California, and Nevada, several times). We'll keep our destinations reasonable, and tailored to his needs. Who knows, Leo may one day get to fulfill his grandparents' dreams, and come boating with them. He loves to contemplate waves and water, and I love to think how soothing he would find the scenery below.
I won't despair if extensive travel doesn't happen, but how wonderful to once again imagine that it might!
TweetUPDATE: I have tweaked the argument below to center on the Teach for America Model rather than the Peace Corps model, and created a petition which I encourage you to sign.
If I had an opportunity to discuss autism with First Lady Michelle Obama, here's what I'd want to talk about:
We need an Autism Corps, modeled after the Peace Corps and AmeriCorps.
There are hundreds of thousands of children and adults with autism diagnoses who need day-to-day support now, and their ranks are swelling. There aren't enough trained professionals to serve them all, and even if there were, many families can't afford them. I can't imagine how those families go it alone, managing their lives without external support -- especially those whose children have moderate to severe diagnoses. Mine is one of the luckiest autism families around; we have access to and funding for the highest quality services, yet we still have plenty of scorched-earth days.
Michelle and Barack Obama have launched a campaign to encourage service, while millions of energetic and idealistic young adults want to work but can't find jobs, and our president has said that he "...believes we must work to guarantee that Americans with ASD [autism spectrum disorder] can live independent and fully productive lives and to assure that their families understand and are able to support a loved one with ASD."
Let's put that all together. Let's create a federally-funded organization dedicated to training volunteers to work with kids and adults with autism. Autism Corps workers could help individuals with autism gain skills and independence, and have recreation opportunities. They could give their families -- all autism families, not just those who can pay for or know how to get services -- some sorely-needed respite. They could make it possible for parents who would otherwise be full-time caretakers to work outside the home. They could supply balance to families who never thought they'd find it. They could make a real difference for families approaching the breaking point.
This is not to downplay the importance of autism discussion, approaches, and research. But those are already on White House and Federal radars. "The Autism Society has invited First Lady Michelle Obama to participate in [their annual conference's] July 24 keynote panel on public policy and autism." This is good news for autism awaress in general, and I hope the panel will be recorded. President Obama has welcomed science back to the White House, which hopefully translates into good news for evidenced-based autism treatments. And the US Dept of Health & Human Resources has publicly released its Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder Research, which bodes well for future autism research, and answers.
While autism and people with autism shouldn't be demonized, we need to be frank: having a child with autism is more stress than some families can handle. Those families have needs that take precedence over panels and promises and research; they need help getting through the day. They need an Autism Corps. I would hope our First Lady (and her husband) could both recognize and support this idea.
TweetLeo is going on a plane today.
That is huge news, and speaks to how wonderfully he is doing in general. Air travel is something we'd written off after a departure lounge meltdown fourteen months ago, and while his aggressive behavior escalated from the summer through the winter of 2008. On January 1, 2009, we put him on a very low dose of Risperdol, and it was a switch-flip. Almost as though all his senses all been previously misaligned, and he could now focus on things other than trying to process each moment.
Since the beginning of 2009, Leo has been increasingly been so content, so confident, so affectionate. He is engaged with his environment, and his family. We are locked in a vicious positive-reinforcement cycle: he behaves well, we shower him with praise and affection, he likes that and wants more, he repeats and expands on the positive behaviors.
Some mornings we now have to wake up our former dawn-responder alarm clock. He usually gives me a sleepy, "Mommy, get in the bed," and if I do lie down, he enfolds me in a bear hug. It's delicious.
His good mood had meant minimized aggression both to himself and to others. During provoking situations, he will start to lunge as he used to, but now pulls himself back or hesitates before he makes contact. That is fantastic self-control. I'm impressed and proud.
He has lots of spontaneous and new language, and this past week especially it has been bubbling up furiously:
- "Dora is on TV, Monsters [Inc.] is a video!"
- "Stand up, Mommy"
- "I'm hungry!"
- "MOVE!" [proper imperative form].
- "I need to run to the potty" (spontaneous potty run!)
- "Turn on TV," then "Turn it OFF" (when done).
- "Move your arm" [to me, proper spontaneous pronoun]
- "Want to lie down in the bed wif Mommy."
- "Lie down, tickle my belly"
- "Jump with me" (on trampoline)
- "Wear your crocs" (when he wanted Seymour's shoes).
- "Cut my apple."
- "Don't spin around" (a current stim is spinning during transitions between activities.)
He has also been doing really well with color and shape matching activities, pre-sight reading word-matching, dot-to-dot, and maze activities. Therapist V, his home ABA therapist/respite provider (who also works at a local autism school), has been instrumental in helping Leo identify new activities' goals in cases where I could not figure out how communicate them. Once he understands them, Leo has been mastering these visually-based tasks very quickly. Like many other kids with autism, he is smart as hell, but cannot always express that intelligence through traditional learning routes.
This is a boy who is ready to fly.
The girls and I are already at our destination at my mom's beach town home, and will be picking up Leo and Seymour in couple of hours. Leo has been talking about airplanes and airports for a couple of months, so I hope he enjoys having his wish fulfilled.
I can't wait to see how our attempt at a full-family vacation goes, because we miss taking our kids to stay with relatives and seeing the cousins -- all the cousins -- frolic and bicker and play. We're keeping this experimental Leo leg of the trip brief and controlled -- one-way, short flight, less than 48 hours at my mom's place, then driving home. If Leo can't tolerate being away from home, we can leave.
But I'm feeling optimistic. We're staying next to a park, can walk to a beach, I've brought Leo's favorite videos, toys, and stacks of xeroxed activities, and stocked up on his preferred foods. There is a trail behind my mom's house; if Leo gets antsy, we can go for a hike. He will still need vigilant supervision, but my mom and my little brother and Seymour will be here, and my girls are mostly self-reliant and hanging out with their teenage cousin Nicole -- Leo's need for a 1:1 adult companion shouldn't exhaust any of us, even if he is less than content here.
Have a happy flight, sweet boy.
(Mali & I planted these dahlia & gladiolus bulbs in March, and have been entreating them to bloom for weeks. This picture was taken the day before we left on our vacation; the flowers are of course about to explode. At least we got to see some of them bloom.)
TweetThose who keep up with reporter Brian Deer's ongoing research into Dr. Andrew Wakefield's questionable research practices re: autism and the MMR vaccine, or who read the Schaefer Report, may have read that:
"Press Complaints Commission Orders Sunday Times to Remove MMR journalist's Stories on Dr. Wakefield from Paper's Web Site"
The problem is that the article excerpted above is from the media arm of Thoughtful House, which is Dr. Wakefield's US research/treatment facility, and that it distorts the facts (as reported on LBRB):
The Press Complaints Commission (PCC) of London, an independent body that oversees journalism fairness in the UK, has issued an interim order calling for the Sunday Times to remove stories written by Brian Deer about Dr. Andrew Wakefield from its web site. Dr. Wakefield had filed an extensive complaint with the PCC regarding errors of fact in Deer's reportage on the MMR vaccine and its possible relationship to autism. The General Medical Council (GMC) in the UK is presently hearing evidence involving Dr. Wakefield and two of his colleagues following a complaint to the GMC by Deer himself. The PCC decision today appears to indicate there are questions about the accuracy of the Deer stories. (Full article)
The Sunday Times has not been ordered to take down the articles. The PCC [Press Complainants Commission] decided to postpone its investigation until after the GMC [General Medical Counci] reaches a decision on the allegations of misconduct. This makes sense. If Wakefield is found guilty the complaint will fail. Meanwhile the PCC has asked the Sunday Times to remove the article from its website until matters can be resolved and the Sunday Times has agreed. [...]More from Brian Deer on Dr. Wakefield and the MMR/autism brouhaha.
So no order was issued, no judgement was made and there is no suggestion of impropriety by Deer or the Sunday Times. All the suggestions come from one source, Wakefield himself. (Full article.)
TweetNew autism parents need to invest in critical thinking, and avoid hype-based organizations that foster autism fear & loathing. If you fall for an autism cult, you might never trust your own judgment again.
The best investment you can make in your autistic child's future is a commitment to intense scrutinization of treatment options. Does an approach make sense, or do you just really, really want to believe it will help? Are there real risks and only possible benefits? Do data and studies support it? If so, are they from independent sources or biased ones? New autism parents need to work past their fear and confusion, and embrace their critical reasoning skills. (If you need a skeptical thinking refresher, Michael Shermer's "Baloney Detection Kit" lists ten criteria for evaluating questionable claims.)