I both appreciated the program and had my fears realized. In this case, my fears were that people would be given a platform to spread misinformation. And it happened. Jenny McCarthy and others made statements that were, in my view, misinformation. But, I appreciated the fact that Frontline took the time to counter much of the misinformation with actual experts discussing real science.
How can it help the cause of a group ostensibly arguing for change on behalf of children if people speaking for them don't give a rap what happens to other people's children? What [Jennifer Margulis] says seems to be a carefully articulated but pretzeled logic barely masking selfish and irrational fear. It's a Me! Mine! Mommy mindset that cannot be helpful in any way to society, to children, or to public health. More than anything, it demonstrates the impossibility of arguing that not vaccinating will somehow make children healthier. There's no defensible, logical way to pull that one off. The fallback rationale, invariably, is the "I have a right to be selfish" argument.
For the record, I vaccinate my kids though I didn't used do (thank you, Dr. Wakefield), and consider Jenny McCarthy and her constantly shifting story/opinion on vaccines and autism a danger to public health. But I'm also really tired of the smackdowns and nastiness as evidenced in all but the L.A. Times & LBRB links above. Vaccines are a complicated issue -- my hope is that those who don't vaccinate for philosophical reasons are also absolutely up-to-date on the latest research and findings.
Regardless, I'm always happy to discuss the matter with reciprocal respect.
This post is a slightly modified version of an email sent in response to a group list member's query on reactions to Frontline: The Vaccine War.
I am having a sad day. Are you having a sad day? I am having a sad day.
I suspect it has something to do with social ineptitude, lack of sleep, and Iz's sporadic rotten pre-teen attitude which for some reason she unleashes on her dad -- especially uncool because Seymour is the kindest person I know. Anyone messing with my partner = instant rage for me. But the object of my ire is our daughter. So I can't lash and slash and destroy, I have to teach and listen and make her hear and understand.
Some sad days I just don't think I'm up for parenting these spirited girls, am so grateful that I can turn to Leo for comfort, revel in his absolutely accepting and sweet nature. For now. Puberty's gonna get him, too, I know. I've heard. I don't want to think about it yet.
I'm also mulling over Leo's annual IEP, which was yesterday. I can't write much about it yet -- I'm still processing the discussion, and we didn't finish anyhow -- we need a second, wrap up, hammer-all-the-pegs-in-place meeting. But Leo has made great progress, mastering or partially mastering many of his goals, the classroom continues to be dynamic place where the teacher and aides modify their approaches, schedule, and environment to meet his needs (frequently due to guidance from Supervisor M), plus everyone who attended the meeting is on Leo's side -- no other agenda, no costs, no reduction in services was raised. Which is something amidst a budget crisis.
So my sadness is amplified due to being in limbo with Leo's plans for the upcoming year. I loathe limbo. I like checking off boxes, boom, done, move on.
Since I can't flip a switch and fix Iz's attitude and Leo's future, I spent some time taking action on a quick project to support Leo: I typed up the social phrases we constantly practice with him and the sight words he's working on at school and with his wonderful speech therapist Sage, framed them for tidiness (Seymour likes tidy, is disinclined to let me tape lists to the walls), and installed them by the front door.
Now whenever anyone comes over and wants to interact with Leo, they have a checklist: Here are things you can say to him, here are words you can write down in any context and ask him to identify. I used a slip-backed 8 x 11 inch frame so we can change the list whenever we need to. So I've done one good thing today.
What quick fixes help your sinking moods, oh parents of children with challenges?
Here's the list, in case you were thinking of visiting:
QUESTIONS TO ASK LEO:
• What is your name?
• How old are you?
• When is your birthday?
• What is your address?
• What is your dad’s name?
• What is your mom’s name?
• What is your BIG sister’s name?
• What is your LITTLE sister’s name?
• How are you?
• Where do you go to school?
• What is your teacher’s name?
SIGHT WORDS TO PRACTICE
in order of mastery
A very cool local cafe, Jigsaw Java, is hosting an art auction this Friday, April 23, to raise funds for the local chapter of the Autism Society of America*. (Leelo did a guided painting for this event.) I'd like to go, just have to find me a date, as Seymour & Iz will be at her school's Father/Daughter dance.
Benefit & Art Auction
FOR THE LOCAL CHAPTER OF THE AUTISM SOCIETY OF AMERICA
Friday, April 23, 2010
Angelica’s Bistro 863 Main Street, Redwood City, CA
• A performance from guitarist, Nick Guzman, 19-year-old musician with Autism
• Additional entertainment by some young people with special needs
• A live demo of Mneme Art Therapy by Lisette Lugo with Nick Guzman
• Hors d’oeuvres and one drink included with each ticket
• Silent Auction
• Live Art Auction of the puzzle art produced during Mneme Therapy *
*This unique puzzle art being auctioned during the event was created by youth with autism [e.g., Leo] in 30-minute individualized sessions with Lisette Lugo, an artist and certified Mneme Therapist. Learn more about Mneme Therapy at ww.artwithoutboundaries.com
Note cards, puzzles and prints of the Artwork will be for sale. The actual pieces of art have been framed and will be auctioned off in the Live Auction. 10% of all monies collected for the art items will be given to the artists as royalties for the use of their art. A small step towards self-sufficiency.
You've never seen such a happy boy in your life. Leo skipped and giggled for the entire 2 1/2 miles of trail. I guess it's been a while since we hiked at this preserve. I guess he's been missing our early-morning weekend hikes. Which I am resuming because 1) OMG look at that spring sky, GOODBYE SUCKY WINTER WEATHER and 2) Both Leo and I need more exercise and 3) The pathway through the poison oak stretches of this trail is now more than 12 inches wide.
Leo and I liked these trailside flowers. Seymour says they are Mule's Ears, a native species. I didn't bother to look them up for potential contradiction points, as I figure anyone who gets asked to visit the Mythbusters studio must know everything.
Here we are at Leo's favorite serpentine rock outcropping. If he were a periadolescent girl, this shot would illustrate how pensive he is about the My Little Red Book I'd found for him, or the fact that I'm being asked to show him how one shaves one's pits. But since we are talking about Leo, perhaps he is mulling over the fact that night time absorbent gear is being deep-sixed this month. PRAY FOR US.
Brilliant color: possible without messing with saturation sliders. Who knew? You can see this tree from the top of our driveway -- which is nowhere near as close as I was when taking this shot -- and I had thought the tree was dead-dead-deadski. But if you squint and put your nose to the screen (or click to enlarge) you will see that the tree is a-bursting with branch-tip greenery. Yay. I have similar hopes for greenery-bursting in the seedling pots Mali and I planted this weekend.
Speaking of Mali - Look, there she is! This is her restaurant, Soublime (the spelling of which is specifically NOT THE SAME as her Uncle's restaurant, Sublime.) Note flowers taped to the sign. After I specifically told her that I really like the flowers better on the bush or in the ground. HI DEFIANT FIVE-YEAR-OLD. Not the most fortunate photo of Iz. Definitely a photo which shows you how fortunate we feel to be dining al fresco on such an embarrassingly beautiful California spring morning.
A lot of us like to put our hands over our ears and shout LA LA LA LA LA when asked to think about formulating a Life Care Plan, because that means we're envisioning our children with special needs having a future without us at their side.
But denial and avoidance does both us and our children a disservice. The time to think about planning for our children's future is now -- the earlier we start, the more comprehensive our planning will be. And the steps involved are both more involved yet less daunting than you may think.
Here's a summary based on tonight's SEPTAR presentation on Financial Planning and Your Child's Future. While the following information is critical, it is not official advice but rather a primer on how to get started and what to look for. When you're ready, you should consult with professional special needs financial planners, and lawyers who specialize in special needs trusts.
What is a Life Care Plan?
Life care plan: takes into consideration the life, needs, and goals of people with special needs. Its about taking care of an individual with a disability after their parents are gone, and ensuring quality of life for that individual and their remaining family in all areas of life.
The goal is to create a flexible roadmap for the person in question's life: If any new therapies, medications, government benefits, etc. emerge, the plan needs to be able to adapt.
Misconceptions About Planning for Your Child's Future
"It's not affordable."
But if you sit down and talk, that is helpful. Many special needs financial planning agencies do not charge fees for preliminary consults and advice.
"Someone will help financially."
People are waiting for a benefactor, will put their faith in grandparents who say, "don't worry about it, we have money, property, business, we'll take care of your child." So people don't plan for the unexpected, like a parent with stroke or alzheimer's who then needs to direct their assets towards their own care. If that happens and you haven't done planning for your child because you were waiting on grandma or grandpa, you've lost a lot of time.
"Trust accounts are only for the wealthy."
But anyone who owns property or has assets can set up living trust that avoids probate and allows your assets to be passed onto your heirs.
"Everything will be taken care of in the will."
A will is an important legal asset, but it only says what will happen to your assets at death, who be the guardian of your children, and who will be the custodian of your money (guardian and custodian are not always the same person).
"Siblings will provide care"
Sometimes parents leave everything to a typically developing sibling, assuming they'll take care of their sister or brother with special needs. But what if sibling isn't financially savvy, or falls in with someone who's not financially savvy? Or get divorced & the ex takes half of the money intended for the sibling with a disability?
Components of a Life Care Plan:
Life care plan vision
Letter of intent
Financial and support services
Special needs trusts
10 Comprehensive Life Care Planning Steps (Money is only part of it!)
1) Address primary issues:
What will my child do for schooling?
Are we working on a diagnosis?
Conservatorship & lining up benefits like MediCal?
What about family issues, do we have family in the area, do we have family members who "get it"?
Need communication throughout process, discussions between legal professionals, parents, doctors, etc. will make planning process easier, so can avoid mistakes.
2) Creative a Life Care Plan vision
What you see happening with your child as they learn and grow. Some people assume child will live with them forever. Others know that's it may not be possible due to increasing behavioral challenges, strength, size.
3) Choosing guardians/conservators
Often spouses have different ideas. Planners can help you prepare for best and worse possible outcomes (what if very best auntie marries a loser who doesn't get your kid?).
4) Identifying Financial Resources
Whatever money/assets you have. 401ks, government benefits, inheritances, etc.
What are your monthly, annual costs that will recur after you die.
5) Have to plan for your own retirement as well!
Best thing you can do for your kids is to plan to be personally financially secure in the future.
6) Letter of Intent
The personal side to the plan. Tells the caregiver how to step in and be the parent, take care of the child.
Talks about what your child is like, what the caregivers will need to know, what their quirks & routines are, what soothes them, doctors, medications, therapies, allergies.
It's not a legal, binding document but it sets a precedent and will hold up in court.
It's a living document and will change. Recommend that it gets update with each IEP.
Many people keep Letters of Intent on flash drives (some medical jewelry now includes flash drive pendants).
It is a legal document that establishes who takes care of kids, who watches over the money. But it will not avoid probate, will go in front of judge, will be public information. Goes along with the trust.
8) Special Needs Trust
Designed to ensure that adult children with disabilities never get disqualified from government benefits.
Needs to be stand-alone from any other living trust you may have.
Trust is irrevocable in your child's name once funded. But the trust owns the assets, not the child.
You really need to go to someone who has designed one.
It doesn't have anything in it - it will be funded upon your death.
What are the criteria for establishing that a child qualifies for a special needs trust? Diagnosis is not required. All that needs to happen is parent draws up SN trust with lawyers.
Your other children can be beneficiaries as well, or a charity if there's any surplus.
You can gift to the trust.
If child has more than $2000 in their own name, they do not qualify for government benefits, and the government will seize assets and incur benefits until that money is spent down.
9) Whole family meeting.
Once you've gone through the process, you want to have whole-family meeting.
Send out a letter to relatives who might designate your child as a beneficiary, saying "we're not asking for anything, but if you don't set this up the right way it'll screw things up."
Also make sure guardians know they're going to be guardians.
Recommend naming a Corporate Trustee to handle all the financial aspects, investments, cash management, bill paying, and not the actual caretaking.
Caretaking can be a separate legal role (where the Letter of Intent comes in).
Last week I was invited to join a group interview with autism activist and author Holly Robinson Peete, to talk about her beautiful, touching new children's book on autism, My Brother Charlie.
I was thrilled to join the chat, because My Brother Charlie is a book that needs talking about. It's a book our community has needed for a long, long time, and one that will hopefully give other people -- and their impressionable, open-minded children -- insights not only into what autism is like, but how truly special and loved people with autism can be.
Holly wrote My Brother Charlie with her daughter Ryan, whose twin brother RJ, has autism. Long time readers know that I am an advocate for literary activism, so I appreciated talking with Holly about her book that not only promotes autism acceptance, but donates a portion of its proceeds (to the HollyRod4Kids Foundation, to help kids like RJ and Leelo).
Holly has serious plans for My Brother Charlie:
"...our biggest goal is to make sure that you know when you walk into a classroom, not only do you see the “No, David!” books, but you see “My Brother Charlie” sitting right next to it. And I think you know that’s going to be a difficult path, but I think we can get there."
It was an hour long, eye-opening, and cherished conversation, I wish I could share it all but that post would be far too long. (Plus we were sworn to secrecy on a couple of points.) The other interview participants were:
Melanie asked about the book's role in helping families whose kids may have autism:
HRP: It is our hope that when families are able to read this book and in the back of their minds know there’s something going on, that they read [My Brother Charlie], it will give them hope and a little less fear to talk about autism and what may be happening with their families. So I hope that it will help get people out of denial.
Melanie asked what "aunties" and friends can do to help kids with special needs and their parents:
HRP: Just take those kids and give the family a night out. That is the biggest thing, that is so underrated. When an auntie says you know what, I’m going to take your kids to the movies or they’re going to come to my house or I’m coming to your house; you and your husband go out, or just you go out if you’re a single mom.
Childcare is huge, because so many of us with special needs kids are very uncomfortable leaving our children with just anybody. And an auntie is a perfect person that can give us peace of mind. We can go out. We can just have some me time, because that’s what parents need.
I asked how much input her co-author and daughter Ryan had, and how Ryan brought her experience to the process:
HRP: Well, it was all Ryan. She came home one day from school and said the kids do not understand what RJ’s going through. And she said, "It’s really sad. I watch him, he’s not connecting with the other guys. They think he’s kind of a jerk because he doesn’t say 'hi' to them as soon as he’s spoken to."
And she said, "You know, I think they don’t understand what autism is and I think we need to come down to school as a family and have this conversation," so that’s exactly what we did. We went down to a fourth grade class. My husband’s played in Super Bowls, I’ve spoken in front of lots of people, but nothing was scarier than sitting in front of fifty fourth-graders, just having this conversation.
But basically, we said to them, "Autism is something that makes your brain a little bit different, but it doesn't mean that you don't need friends, that you don’t need people to understand who you are." And then we talked about strengths and weaknesses. We asked them what theirs were, and one kid said I’m great at soccer, but I suck at math. And another kid said I’m great at math, but I’m terrible at football."
And then we said, "Well, our kid can tell you the name of every single American President, one to 44, if you just give him a number. He can tell you the name of every single player in the Major League Baseball; every single umpire’s name, practically. He is a wiz in sports; if you just ask him these questions he can tell you that; however, he’s terrible at making friends." It made such a difference.
So that was really the basis of the book. We though, "If we talk about how Charlie has these strengths and then focus on the things he can do great, then I think that’ll take the scariness away from autism and promote autism acceptance."
But it was all Ryan and she had a lot to do with making this book. The two of us, we sat down, we talked about our goals and our objectives, and we wanted to make sure that we were able to connect with children and help them understand what autism is and help them be more accepting of it.
Ramesh talked about how his daughter with autism read My Brother Charlie and said, "This boy is just like me."
HRP: Oh, wow. Oh, my God -- that gives me the chills. That was what we wanted to do. We wanted kids to be able to identify with these children and see themselves portrayed as, I don’t want to say heroes, but as the protagonist in a mainstream book.
Ramesh then asked how long it took Holly and her family to publicly acknowledge that RJ has autism:
HRP: We took a long time. It took us about six years to be able to talk about it publicly. It was a difficult conversation for our family. My husband didn’t want to pull [RJ] out as the poster child for autism. We were concerned about how labeling him in the media might affect him.
We didn’t keep [RJ's autism] a secret, our family circle knew and people knew, but we didn’t make a big deal out of it. But really, it was something random that made us decide that [public acknowledgment] was something we needed to do. We were out at an amusement park and a family walked up to us and said, "we know who you are and we had heard through the grapevine, and thank you so much for talking about it because it’s really helped us." And we realized that if we talked about it even more that we might be able to effect change.
Ramesh also asked how RJ was taking the publication of My Brother Charlie:
HRP: The perfect example is, we were in Philadelphia at an amazing museum called Please Touch Museum a couple weeks ago. And we shut down the whole place for just families and their kids with autism. And it was so amazing and families didn’t have to worry about their children touching things. They could just be free.
We read the book and at one point a kid walked up to RJ and said hey, Charlie, and started calling him Charlie. And [RJ] said, “I’m not Charlie, I’m RJ, but Charlie’s a cool kid, isn’t he?” And so he really does get that he’s helping to put this message forward. He’s almost 13 and I’m loving that he really does get how important this is to have this conversation.
Because basically, he became a rock star in his classroom after we started talking about his strengths and kids started looking beyond his weaknesses. And I think all it takes is just to have more conversations like that.
I asked if her family had ever encountered people who treated RJ with less than compassion, and asked what she has done in those situations:
HRP: Well, of course we have. Every single parent who has a child over the age of three or four, certainly school age that is on the spectrum has experienced some, whether it’s at school or whether you’re in the supermarket and your kid goes flat on his back in the aisle and someone walks past you and either verbalizes or gives you that look like why can’t you control your kid?
So we’ve all experienced that and I certainly have, especially on airplanes. That’s always fun, the airplanes, because he’s so much better now, but boy, when he was three, four, and five, his favorite thing was to keep pushing the call button for the flight attendant. And if he couldn’t do it, he would kick the seat in front of him, so it was one or the other. And so (we used) to have to try to disable the call button. People got so angry and really just you know you know how people are on planes with just typical kids. So this was rough.
And I usually try to say to people you know what? He has autism and I just want to tell you that that makes it so he cannot help his behavior. So I can’t yell at him or spank his butt to make him stop. So you just rely on the basic compassion of other human beings. And oftentimes that’s not enough. But I feel like I can educate people one person at a time and hope that there’s an each-one-reach-one mentality that happens.
But that’s one of the reasons why we did write the book. We really, really wanted to get this word out about autism being not so scary.
HRP wanted to add that she's been getting some feedback saying that this is a book about a boy who makes progress, people saying that not all kids with autism will do that:
HRP: [RJ's] made a lot of progress, yes; and we’re blessed because we were told he wouldn’t be verbal and we were told he wouldn't do a lot of things. There’s a moment in “My Brother Charlie” where [Charlie] says I love you and many families will never hear their daughter or son say that. I do think about them and we spend a lot of time with teenagers that basically use machines to talk and I’ve found them to be amazing people, so just giving a shout out to those families as well.
Jennifer asked what was it like working with Ryan on the book:
HRP: It was a tremendous bonding experience for my daughter and myself. We had the best time and she’s so proud. It’s very interesting watching her blossom into this amazing writer and this really great sister. I mean she’s this unbelievable advocate for her brother. And now she’s going to start blogging and having chat rooms with other siblings.
And you know I talked earlier about how we went to the Please Touch Museum with all those families with autism, and they were calling RJ Charlie and he was eating it up? But with Ryan, sisters and brothers were walking up and going guess what? I’m a twin sister and my brother has autism, too. I mean they were proud of it and to connect with another young lady who’s experiencing and verbalizing what they go through.
You don’t hear enough about what siblings have to deal with; ruined play dates, vacations cut short, terrible airplane flights, you can’t stay in the movies or restaurants too long. And these things can take their toll on siblings and I have spoken to many adult siblings of children with special needs and they’ve experienced that, too.
So writing with her was amazing, but I have to say the best part is now, seeing the connection and how people are responding to the book and being very comfortable with approaching her, and her just getting that she’s doing a service.
I'll leave you with Leelo's little sister Mali's review of My Brother Charlie:
Holly is graciously offering an autographed copy of My Brother Charlie to my readers. To join the book-seeking fray, please visit my review site.
Photo of RJ, Ryan, and Holly Robinson Peete (c) Chris Voelker, VoelkerStudio.com
The focus of the Miceli Financial Partners Special Care Planning Team is to provide wise financial strategies for families with members who have special needs.
Families with special needs have unique financial circumstances that are often overlooked by financial advisors. Our Special Care Planners have been certified by the American College with specialized and exclusive training to address these unique needs and situations.
In addition, our Special Care Planners work with families to provide "every day" financial solutions, such as education funding and retirement planning.
Our Special Care Planning Team has alliances with legal and medical professionals, non-profit organizations and support groups at the community level. Working collaboratively with these entities and caregivers allows implementation of effective life care plans. An important aspect of life care planning is to structure plans that preserve government benefits while maintaining the ability to accumulate and grow assets.
As always, SEPTAR will provide babysitting, snacks, and all the coffee you can drink.
Please contact me with any questions. See you Thursday!
Cannot believe the sheer number of activities our family shoehorned into eight Spring Break days! All three kids and all three schedules overlapped for one overstuffed, wonderful, trying week. I'm still not fully recovered from being ON for so long and with such intensity, so this will be choppy. But here's a record of what we celebrated/survived:
A free-range, grain-fed, at-home spring break would mean the kids would slaughter each other by Tuesday or I would keelhaul them sooner than that, so on Saturday all five of us drove from the Bay Area to San Diego. Our goals: Easter Bunny time with my mom and brothers' families, and witnesses for/help with any keelhauling.
Seymour drove down with us and got to partake in Easter fun, kiddie egg hunting, beach frolicking, and even a 7.2 earthquake in the middle of Easter dinner.
Monday Leo got up at 5 AM and we visited the seals in La Jolla Cove and we went to Anza Borrego Desert (pix below) which was in full bloom - dramatic cholla and ocotillo and barrel cactus and dramatic scenery and palm canyons. I hadn't seen the desert in bloom since I was ten. There was freezing rain and hot apple pie in the mountain town Julian on they way back, then perfectly pristine blue skies back at the coast.
Tuesday Leo got up at 5 AM again and I got a triple shot latte at 6 AM. A couple of hours later (before the caffeine wore off) I was invited to a group interview with the amazing Holly Robinson Peete (post coming tomorrow) about her adorable, necessary new kids' book My Brother Charlie. I was not able to get babysitting and my mom had to work but thankfully my brother and sister-in-law volunteered to pinch-hit with Leo while I asked my questions.
Wed Leo got up at 5 AM again and I published my BlogHer interview with Pamela Merritt, aka Shark Fu of Angry Black Bitch, as part of BlogHer's autism awareness month, including my Welcome to Yellowknife post, and interviews with all the BlogHer10 autism panelists - Pamela's was the first, I will be interviewing Stimey next week, plus my sister BlogHer contributing editor Mir will interview Sharon DaVanport, plus write her own posts, which I will link to here as they emerge. Interviewing Pamela was such an honor -- I adored her long before I found out her brother Bill has autism. Her interview is of particular value to those thinking about the people they love who have autism and are thinking about long-term caregiving needs.
Wed also: Drove home. Was looking forward to resting after three three-hour nights, but then my mom told me that she never drives anymore because she falls asleep even on the drive between San Diego and Orange County. She wasn't trying to terrify me, but she did. And terror is a powerful stimulant. So I was in the driver's seat, all the way home. Which was fine.
We stopped by Seymour's brother's restaurant in Culver City on the way home, and discovered that he serves the scrumptious as ably during lunch as during dinner. We also took a short detour to meet Bonnie Sayers of Autism Family, who was even lovelier in person. Didn't get to meet both of her sons but we did meet N, who was charming and who understood Mali instantly. Leo was in mood, though; we didn't get to stay long. :(
Thursday: Leo painted a painting with a wonderful therapist for an autism auction later this month. I was skeptical but the artist had faith in him and he responded to her faith with beautiful results. Perhaps I will go to the auction and bid on his painting.
Friday/Sat/Sun: More trips: My wonderful mom watched Mali while Leo and Iz went to sibling camp and Seymour and I took off for weekend at coast - first trip away together in more than two years in which I was able to jettison all projects and finish work before we left. And we saw/talked about/experienced: Sharks, flowers, beach walks, hot tubs. People were so nice everywhere. We found out that gimlets were created to thwart scurvy and they are now my new drink because I heart anything about which once can say, "eat/drink this so you won't get scurvy!" We saw an informal, unmarked beachfront graveyard and talked with someone who'd found centuries-old bones there. We found out why the coast is called the Chalk Mountains (come on, ask me!). We got to see two local bats up close!
This spring break deserves one of the Was it a Good Week? posts. So much amazingness. But Leo didn't sleep. I won't ever again go on vacation with three kids and no Seymour without arranging for someone else to take over my work shifts. And there were no breaks during the day - no one else was able to handle Leo. Who wasn't at his best - he had one tantrum the likes of which I've not seen since 2008. Nor were his sisters. And there were horrible, stressful, this-shouldn't-happen-to-anyone events happening in friends' lives that I couldn't do anything about.
But: Wildflowers were in full explosion mode in Tejon Pass, Anza Borrego Desert, Torrey Pines, and on the San Mateo County Coast. Got to meet Bonnie. Got to take my mom and kids to their uncle's restaurant. Leo was really sad about going to camp after only being home for a day but cheered up and a great time; Iz had a great time too and we were told that they'd hold a counselor spot for her if she wanted it! Mali, who never gets 1:1 time with anyone, got 1:1 time with her beloved Grandma all weekend. Came home from weekend with Seymour (mmm) revitalized but also after that week (plus windstorms on coast meant no sleeping) to house with kids who were happy to be home and a wonderful mom who had made us all split pea and ham hock stew from scratch. What's not to be happy about? Really. Especially since school for all three kids resumed today.
Here are the pictures:
Leelo drew a house! Spontaneously! During Saturday's dinner at everyone's favorite Anaheim restaurant, Mexi-Casa! I am such a huge believer in the power of the travel-size MagnaDoodle/DoodlePro.
Mali's 14-year-old cousin Nicole really likes to play with makeup. I am both creeped out, and fascinated by the idea of my eyebrowless kid having eyebrows.
Leo pre-Easter egg hunt. He did great! He wasn't as frantic as his siblings and cousins, but still found plenty of eggs, on his own, without more than an initial prompt.
Silly me, I thought the kids wouldn't want to swim in the frigid San Diego waves in April, and brought no bathing suits. But they were all perfectly pleased to be practically piscine in their undergarments.
Leelo visiting his friends the seals. He was initially less than pleased about getting out of the nice warm car before 7 AM. I was not terribly sympathetic as I was not pleased about getting out of my nice warm bed before 6 AM.
Proof that I was awake far too early - I am not only wearing the world's ugliest Crocs (bought at Ross for $10 for precisely that reason -- if one's going to wear such nasty shoes, one must fully embrace their hideousness) but I am wearing them with BLACK SOCKS. Nice background, though, eh?
As my sense of humor has been irreparably warped by being raised with three brothers, I consider this the funniest part of our entire trip to the Anza Borrego Desert Interpretive Center.
Cactus Flower at Anza Borrego!
Leo loved digging with his toes in the soft Anza Borrego sand.
Torrey Pines during wildflower season, another hideous part of San Diego. Those flowers are sea dahlias. They only bloom during particularly lush years.
Purple pound cake at Uncle James's restaurant! Leo liked this cake so much he ate it even when we smothered it with crushed pistachios. Sadly, it may be off the menu by now.
Almuerzo con perro, como muchos Angelenos.
Meeting Bonnie! She gave Iz the most awesome hint-per-day Calendar for kids with autism and social skills deficits. Which Iz immediately hid, because it's HERS.
You've earned a gimlet if you're still here. Fresh lime juice makes all the difference.
This is the kind of image I'd like you to think of for Autism Awareness Month. There's a story behind it: He got up at 5 AM after I went to bed at 2:30, he was grumpy about coming on a walk instead of staying in the nice warm car, kept saying "stay in the van" -- but once he saw the waves, the rocks, his friends the seals plus the seagulls (which he correctly identified as birds, good categorizing Leo!) he was all about this kind of happy. Which upended my sleep-deprived grumbling.
Be aware that autism can mean pure, whole-hearted, genuine joy.
One critical point I meant to incorporate into the Welcome to Yellowknife post but didn't get to: I believe one of the most forceful ways to increase autism awareness and acceptance is to declare how much we love the people with autism in our lives: Our children, our siblings, our friends, our cousins, our partners, ourselves. Tweet it loud, blog it proud.
Also, I finally got to read Kristina Chew's reaction to Autism Awareness Day, 'Aut' With Our Autistic Son, and am glad to know that others feel as strongly as we do about community visibility as a form of autism advocacy. Thank you, Kristina.
Hope those of you who celebrate Easter have a lovely one. I can't wait to see Leo's reaction to our cousiny Easter Egg hunt, upon realizing that those plasticky eggs have CANDY in them. If you see a mushroom cloud of happiness emanating from the San Diego coast, you'll know that his hunt was a success.
Leaving you with an Easter thought from last week's Unitarian sermon: Jesus did not come to be worshiped, but emulated. This is a lesson for all of us, about thinking vs. following, no matter what label we give our faith.
Seven years ago, my son was pronounced 'autistic.' It felt like we were being dropped into Arctic waters. I was shocked, numb, unprepared, and flailing. And the books I found didn't help, didn't tell us how to climb onto the ice, didn't advise us how to gear up and adjust to polar living. No, the books of the time focused solely on cures and recoveries, wove tales of autism-free tropical paradises. Of places where we'd never feel cold again.
In their tales of the horror and harshness of polar living, they did not allow that the north pole's magnetism is as mutable as it is strong, and that for families like ours polar living is simply - reality. We can adjust to it, we can learn how to work with it, or we can fight it. Our choice. But no matter how we go about it, we're working hard, and both we and our children deserve respect.
Click on over to BlogHer for my Autism Awareness Day post. It's a similar-themed though more expansive perspective on why we need a new geographic analogy for autism -- forget Welcome to Holland, that was written for parents of kids with Down syndome -- Welcome to Yellowknife instead! It also ends with some suggestions for going beyond Autism Awareness into Autism Action. Please do forward it to anyone who needs to read it. Here's a teaser:
...once you've settled in, you start to realize how cool Yellowknife can be. You start to see that Yellowknife is a crucible for the intrepid and the fearless, for people like the Ice Road Truckers who brave long and grueling journeys to provide subarctic children with the supplies and services they need. You find that, as in San Francisco, people come to Yellowknife from all over the world.
How are you bringing attention to Autism Awareness day? I'm taking a numerical approach:
4 = hours of sleep
3 = number of deadlines to hit by 2 pm
2 = number of children home on spring break
1 = number of those children who have autism
Leo will spread autism awareness from morning 'til night, as he does almost every day of his life. He'll do it while we go shopping for supplies for tomorrow's all-family road trip to San Diego. He'll do it while we have lunch at his favorite restaurant. While it's nice to have a day dedicated to autism awareness, it's not as though our family and the people we encounter every day are unaware of it. But I'm hoping the Welcome to Yellowknife essay can help people who don't live in autism households be a bit more aware of what autism means.