After I picked Billy up from school today, we went by our local Super-Walmart -- so huge that I think it has its own gravity field -- to pick up a blue lightbulb. In case you haven't heard, Autism Speaks is asking everyone to "Light it Up Blue" tonight, in honor of World Autism Day tomorrow. We're going to put our blue lightbulb in our front porch light.
Anyway, Billy was lounging in the cart, narrating the experience: "Mama is looking at dress-up clothes ... there are a lot of unicycles in this house (bicycles were hanging from the ceiling)...Billy want a unicycle...Billy want 10 unicycles ... Mama is looking at --"
Suddenly, he stopped and pointed.
BILLY: Mama, what are you looking? (His way of asking what I'm looking at.)
ME: I'm looking for a blue lightbulb. Here we are. Let's get this one. (And I put it in the cart.)
BILLY: Mama, what are you putting?
ME: I'm putting the blue lightbulb in the cart.
BILLY: Because --- ? (This is how I prompt him when I want him to provide a reason "Why" to something he does!)
ME: (Laughing) BECAUSE ... well ...
Then I stopped laughing. What do I say? I decided to keep it real, nonchalant, to try and make it positive.
ME: I'm buying a blue lightbulb, because when we shine it from our porch tonight, we will be telling everyone I love someone who is autistic. Like you!
BILLY: (Big smile) Like me!
ME: Yes! You are so smart and so beautiful and I want everyone to know. So I will turn on the blue light to say that I love you.
(He seemed to ponder this for a few minutes.)
BILLY: (finally) Mama ... (He seems to be really thinking about his response, thinking so hard it hurts.)
ME: Yes, sweetie?
BILLY: Mama, I love fish.
ME: Well, we'll see if there's a lightbulb for that.
Reader Comments
Happy Autism Awareness Month!
Merry Autism Awareness Month?
Be AWARE!
Beware ...?
Whether you're "lighting it up blue," sporting ribbon magnets on your car, or are feeling kinda Grinchy about the whole thing, as I was this time last year, your perspective on Autism Awareness Month is appreciated and welcome here. If we're truly going to be "aware," we need to be honest. And my "awareness," I'll admit, has been an ongoing journey.
Last summer, I wrote a post called "Loving Lampposts, Curing Autism and the Dark Night of the Soul." It has been suggested by people who love me that I made myself sound crazier than usual in this post. I countered with the fact that it was in no way unusual.
Anyway, shortly after I wrote the piece, including my heartfelt wish that Tallahassee would soon screen the film Loving Lampposts, I got an email from the filmmaker. Todd Drezner, father of an autistic son about the same age as Billy, wrote to just say "Thanks" for mentioning the film. And he said he'd keep me posted if the film made its way Southeast. What a mensch.
Flash forward to Autism Awareness Month 2011 and guess what: Local screening of the now award-wining "Loving Lampposts: Living Autistic!" If you're local, details (date/time/place) are in the sidebar at the right. If you aren't local (or even if you are and can't be asked to attempt campus parking), you can now order the award-winning film on DVD (click on the banner ad above).
"Loving Lampposts: Living Autistic" follows Todd's journey as a parent from diagnosis of his son's autism to acceptance and beyond. He poses the question, "Is autism a sickness or simply another way of being and thinking?"
He introduces the audience to the recovery movement: those who think of autism as a disease that needs to be cured. Among their most notable advocates is celebrity Jenny McCarthy, a proponent of the anti-vaccine movement.
And he speaks to advocates in the neurodiversity movement: those who believe autism is simply another way of thinking and being. They promote the importance of support for and acceptance of autistic people. Speaking for this camp are scientists and autistic adults like the brilliant Dora Raymaker, working on her graduate degree in Portland, as well as Stephen Shore, a professor at Adelphi University. As an autistic child, Stephen was recommended for institutionalization. Now he teaches music to autistic children and lectures around the world.
I'm not giving away any more of the details of this moving film, but I highly encourage you to see it. As a parent of an autistic child, I believe the message of this film is important: The more we can do to introduce the world to real autistic people, the better prepared it will be to embrace and support their unique brains.
And now, because no holiday would be complete without presents ....
PRIZE! PRIZE! GIVEAWAY! FREE! FREE! PRIZE! ENTER! PRIZE! GIVEAWAY! FREEBIE! SOMETHING FOR NOTHING! FREE! FREE! PRIZE! PRIZE!
I'm going to give away a copy of the "Loving Lampposts: Living Autistic" DVD to one randomly selected reader. To enter the giveaway, here's all you have to do:
- "Like" LifeIsASpectrum.com on Facebook. That's easy: The button is right there at the top right-hand corner of the page.
- Post a message -- ANYTHING -- about autism awareness on our Facebook page. It can be a personal experience with autism. It can be an urging to "Light it up blue," or it can even be a "Happy Autism Awareness Month" song you've written. You can even write, simply, "I'm aware."
Post a comment on this blog after you've completed these steps, so that we can give you credit for them. That's all you have to do to enter.
BUT ... while not required to enter, you can get one ADDITIONAL entry into the competition for doing EACH of the following:
- "Like" Loving Lampposts on Facebook.
- Follow LifeIsASpectrum on Twitter. (Again, you can just click the Twitter button in the top-right corner of this screen.)
- "Like" sponsor Pea Green Solutions on Facebook.
- Follow sponsor Florida Commerce Credit Union on Twitter.
Again, post a comment here to let us know that you've completed any of these extra entries.
The winner will be announced on Friday, April 15, 2011. If local, that person will also receive reserved seating at our Tallahassee screening of the the film, along with their family.
I want to say thanks to a few people who helped make this screening happen:
Todd: I can't wait to see your next film, after seeing the thoughtful, honest and beautiful way you addressed our community and posed some very controversial questions.
My sister, Sam Strickland, CEO of Pea Green Solutions: Without your social network (and I mean that in the old-school "I have to actual KNOW people" kind of way) I'd simply be some nerd with a website ... whose son would be going to a school half an hour away.
Florida Commerce Credit Union: Board member J.R. Phelps spearheaded the sponsorship of this screening, and we couldn't have done it without him and them. FCCU is more than a financial institution; it's a community leader in Tallahassee. (And I'm not saying that just because I have two mortgages there ... wait, make that THREE mortgages.)
The Florida State University College of Motion Picture Arts is the best-kept secret in Florida. No, make that the COUNTRY. Seriously, this is one awesome film school, and I would go on and on about its phenomenal alumni and dude of a Dean, but you should really just enroll and find out for yourself.
And the CARD Center. Where do I even begin in thanking CARD (Center for Autism and Related Disorders)? From the moment we started suspecting a "problem" to our most recent IEP meeting, the CARD Center has been literally at my right hand. I always feel like I have an advocate, that Billy has an advocate, whether we're facing an autism diagnosis or the equally daunting challenge of potty training. CARD's commitment to the family dealing with autism is the reason we chose their Autism Foundation as the beneficiary of this fundraiser.
Everyone donating $25 or more to CARD's Autism Foundation will receive a copy of the DVD of "Loving Lampposts: Living Autistic." If you're local, we hope to see you there. If you aren't local and can't find a screening near you, click the banner ad at the top of this page and you can order your own copy of this inspiring and hopeful film.
Reader Comments
Like you on FB
I have posted MANY comments on FB about Autism Awareness, including one about this film.
Like Loving Lamppost on FB
Follow you on Twitter @ASDsupportNC
I liked Life is a Spectrum on FB and left you a comment :)
I liked Loving Lampposts on FB
And I already follow you on twitter @heatherlisa82
Would have done these things without prize incentive
I would have done these without the prize incentive :-P Like (love) your Life is a Spectrum FB page, Like Loving Lampposts, and now following LifeIsASpectrum on twitter.
Happily did all of the liking and following! Looking forward to checking out Loving Lampposts at the screening no matter who the random selector picks. =)
Liked the Facebook page!
Hugs,
Wendy
Happily did all of the liking and following! Looking forward to checking out Loving Lampposts at the screening no matter who the random selector <a href="http://www.sbobet365.com">sbo</a>
<a href="http://www.sboasia99.com">sbo</a>
Total 11 comments
OK, maybe that's pushing it a bit. But in case you haven't heard, April is Autism Awareness Month, and we've got all kinds of things planned this month at LifeIsASpectrum.com. There's going to be much less discussion of how much I hate laundry and how I haven't gotten a pedicure in a long time -- and much more discussion of worthy people and subjects.
And some fun stuff. Like giveaways and prizes and videos and a big surprise!
So if you're one of those people (like the neighbor whose name I will not mention) who still has a Christmas tree up and visible through the living room windows, hang a few autism awareness ribbons on it and look indignant at anyone who suggests you're just too lazy to put it in the attic.
Speaking of that ribbon on the left, what's the deal with this puzzle anyway? Why do the pieces, even when assembled, not actually form any picture? It looks like a puzzle after Billy's done putting it together (FYI, he's not one of those autistic kids with an amazing puzzle-putting-together ability or desire).
Maybe that's one of those questions I'm not supposed to ask, like why do the cars in the movie CARS have houses? Who built them? Who installed the ceiling fans in the Radiator Springs court house? And Veggie Tales: The vegetables clearly have no hands, so why how does the celery reporter carry a microphone? Why would they even have hand-held microphones in their world if there are no hands? And why do their doors have door knobs?
Yes, these are examples of a few of the questions I will NOT be discussing during Autism Awareness Month. So breathe easy, and check back with us tomorrow for the big kickoff!
Reader Comments
Why DO they have doorknobs??
Looking forward to seeing all that's in store!! I've been in anticipation of this weekend and month like it really is some kind of holiday. I never expected to be this into it. We have our lightbulbs ready to go up and blue shirts ready for their iron-on awareness logos (hoping it's legal to use). We'll be sporting them at Springtime Tallahassee along with the jewelry Gracie picked out at Country Dollar today. She's a hot mess. =)
Snippets 'N Stuff
I will look forward to "tuning in" daily. :)
I Need Answers
I'll only come back if you promise to answer at least half of the questions posed. A quarter of them? One? Okay okay. I'll be back anyway.
Whoa - I remember the excitement here now... Amanda - you are such a great cheerleader and advocate. You're also a great salesperson! I'm so curious, I have to come back and see what you'll be up to...
Total 4 comments
I've been out of touch again because we've been on Spring Break. It wasn't that we didn't have Internet access; the condo where we stayed had wireless high-speed Internet. It wasn't that I purposely took a break from electronics in an effort to reconnect on a more personal level with my family – as much as I'd like to claim that as the reason. In fact, the reason I have not been blogging is #1 on my list of “A few things Mama learned during Spring Break 2011 ...”
1. You have to be able to hear yourself think in order to write.
Who would have thought? I had all these wild and crazy ideas about our vacation at the beach ... before we actually left. As I packed swimsuits and running shoes and sunblock, I imagined myself starting each day with a meditative walk on the beach, followed by a trip to the spa downstairs where I would work out for a full hour before hitting the sauna. In my mind's eye, I topped off this indulgence in self-care with a full body massage and pedicure. Which brings us to ...
2. After 24 hours with my kids at the beach, I want to work out like a hole in the head.
And as for the sauna: HA! I was lucky to have time for a shower. The closest I got to a pedicure was rubbing my feet on the bottom of the pool while carrying a child on my back.
But it was phenomenal week. Last year at this time, we had a “stay-cation” for Spring Break. We just didn't feel that Billy was ready for sleeping overnight in a strange place. That was a great holiday too; we just stayed in town and “played tourists” in our own city.
This year, though, we took the next step: an actual week-long vacation. Number 3 on my list is something I've stated before ...
3. A year can make a world of difference in the life of a child, any child.
Please remember that -- and help me remember it -- when we get a bit down about the current situation.
We take so many things for granted now that were practically unthinkable a year ago: eating out in (certain) restaurants without meltdown, the kids (mostly) sleeping through the night, Billy being potty-trained, Billy enjoying the company of other children. It's important to look back and realize that, even if it seems slow sometimes, progress is being made. And speaking of other kids ...
4. Sometimes when we back off for a little while, nudge our little birds out of the nest, they will make breakthroughs seemingly on their own.
I sat in rapt wonder at a playground this past week as Billy played for a good half-hour with another little boy. They threw a ball back and forth, kicked it (sort of) to one another, chattered away in their own little ways, laughed and had a big sporty little boy-time. He didn't need me to provide appropriate social prompts, encourage him to take turns or guide his behavior in any way.
Of course, this wasn't actually a miracle. It just looks that way sometimes. His devoted team of speech therapists, teachers, aides, behavior therapists, occupational therapists, and family members have been working towards this goal for YEARS.
So team, take a bow -- alongside Billy. Your hard work has resulted in one happy four-year-old enjoying a great day at the playground and making a new friend.
5. Vacation is no time for flashcards.
Of course, that didn't stop me from packing them. I broke out the sequencing cards one morning (3-step cards to help him learn “first, second, last” storytelling), and asked Billy about one simple picture story depicting a boy getting a book off the shelf, “Billy, what does the boy want to do next?” Instead of picking out the picture of the little boy reading, Billy replied, “Go to the beach.” And I got the message.
As a mom, I have to work on “going with the flow” a little bit. It's tough. If you read this blog regularly (and thank you, if you do!), I'm a control freak. I readily admit it. I spend so much of my time trying to be three steps ahead of every meltdown that I forget to relax and let my kids be kids sometimes. I used to have “Every moment can be a learning moment,” as my mantra, but my new mantra is, “Every moment doesn't HAVE to be a learning moment.” Chill out, mom.
6. It's Willow's vacation too.
Wait a minute, I have another kid? Sometimes, it still kinda surprises me, because so much of our planning goes into giving Billy the support he needs in any situation that I forget that Willow has "special needs" too. Even her birthday party gets planned around Billy's schedule, challenges and preferences. She's NEVER managed to blow out her own birthday candles without him getting there first.
Willow's few needs are for a moment of individual attention each day, a handful of birthday cake, and then she's good to go. The rest of the time, she's happy to make it all about her “Bee-dah” too.
7. Billy is pretty funny.
This isn't a revelation, but I was constantly reminded over the past week. One day, he was passing a stone-shaped speaker by the condo pool, he stopped pointed, and said, “I think that's ROCK music!” Then he nearly fell in the pool he was laughing so hard at his own joke. It was a pretty good joke.
8. Autism can still surprise me. And hurt. And confuse us.
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Out of nowhere, Billy became incredibly fearful in the middle of our vacation. He suddenly balled up in a corner, with his fingers in his ears, screaming, “I'm so scared!” He stayed that way, off and on, for most of the next 24 hours. When we coaxed him into talking to us, the most we could get out of him was, “I'm scared of captains.” He had seen some cartoon about pirates, and we had been to a restaurant called “Peg-legged Pete's,” neither of which seemed particularly scary.
All we could figure was, like his fear of kangaroos, the fear of “captains” really means something else, some mystery made up of sensory overload, unpredictable schedule and general weariness born of several days of non-stop activity. All we can do sometimes is sit close to them, talk softly and wait it out.
Or, in Dave's case, promise Billy that if we see any captains, we'll “kick them in the peg leg and laugh.” I don't know what sort of effect this is going to have on Billy's ability to empathize with disabled mariners, but as Dave pointed out, peg legs are a bit thin on the ground these days. And it did make Billy laugh.
9. Sometimes autism's surprises are really good ones. For instance, even a naval air museum is fun, exciting and hilarious when viewed through Billy's eyes.
Let's just say that on a really really good day, when I'm in a great mood, I'm faintly ambivalent about naval aviation. The idea of spending an afternoon touring various types of aircraft is likely to send me to my bed with the vapors.
Until I visited one with Billy. He went completely monkey-poop over the National Naval Aviation Museum. He danced around under the giant planes and literally trembled with excitement. He hugged the end of one plane or jet or whatever you call it and said, “I hug you! I love you, big jet!” Then he tried to insist that I close the ceiling bubbly thing over the driver's seat so that “Billy can fly. Billy can FLY!” Dear lord. I don't think so. The sight of an old bi-plane made him fall on the floor in hysterical giggles. Really?!
The museum was free and had an awesome kids play area with a kiddie aircraft carrier, complete with slides (Are there slides on an aircraft carrier? I'd like to think so.) and little helicopter that the kids could sit in. Willow quickly took command of the ship and bossed around children twice her age. I think she has a scary affinity for the military.
So it was a great Spring Break, despite the fact that I never darkened the doors of the spa or the gym and my toes still look like they've been mauled by beavers. As usual, I learned at least as much about myself and what I need to work on as what I learned about Billy. Which brings me to the end of this year's list ...
10. I should really stop making lists.
Who am I kidding? That's never gonna happen.
Reader Comments
Great list
This is a great list! Looks like a great time :)
I'll remind you that a year can make a HUGE difference, if you promise to remind me, too!
I enjoyed this post... I have a daughter who is a list maker and used to be a control freak. That has been adjusted since baby #1 came and she's the one that is due with baby #2 so her grip on control has slipped significantly. My favorite line in this is " toes still look like they've been mauled by beavers." LOL. I'm with you.
Looks like a really great trip! Beautiful pictures. Have any tips/tricks for the car ride there and back? I think that's our big hang-up. Our kids (both of them) do not do well for after about 40 minutes. We do fine once we're there, but good grief it has to be a great place we're going to make it worth the hours in the car!
Lists
A year can make a huge difference. Last year I couldn't stop making lists. This year - not so much.
All things considered, sounds like a great vacation was had by all.
Sounds Like a Great Vacation!
It sounds like you had a great time! I'm so glad. Billy's progress is also fantastic!
I needed to read this
#3 really hit me between the eyes. Right now I'm so wrapped up in the "what we can't do's" that I can't even fathom the future. Thanks for giving me hope!!!
Oh..and my little one has the weirdest fear of cows (cartoon and real). Makes every Ipad game with animals fun. And Chik fil A is on the banned list right now! ha! Glad we not alone in fears of things that have no rational explanation.
So much better than our Spring break...
Sounds like a great vacation! I agree with your husband...I think peg-legged pirates should be the one prejudice that Billy is allowed. So awesome that Billy has made such great progress! That spontaneous play date is like a dream come true!
I like your lists!
Especially when they're like this! Loved this post - keep 'em coming!
Welcome back to Blogland, Amanda! It sounds like you guys had a fun vacation!
"on a really really good day, when I'm in a great mood, I'm faintly ambivalent about naval aviation." Best. Line. Ever. I feel the same way! A couple of summers ago while visiting my brother, he decided it would be a good idea to tour the Diefenbunker, which was built during the Cold War to house the Canadian government if there were a nuclear attack...it is now a museum. Let's just say the kids faked interest as long as they could...
I'm a control freak too, but I almost never make lists...
Wendy
Total 9 comments
'Cake'
Submitted by Billy Broadfoot
Ingredients
- 31.7 oz couscous
- 34 fl oz olive oil
- 7 oz dried thyme
- 7 oz dried tumeric
- 19 oz whole nutmeg
- 32 fl oz white vinegar
- 15 fl oz soy source
- 10 fl oz worcester source
- 4 oz ground cardamon
- a pinch of herb de provence
- 14 large eggs
Place all the ingredients except the eggs in a very small pan. There will not be enough room in the pan -- this is by design and is a vital part of the recipe. Next, take 14 eggs and carefully arrange them in 2 rows on the kitchen floor. Remember, should any less adventurous cook (Dave) stumble upon this scene and seem momentarily lost for words, you can easily reassure him by loudly shouting 'I am making cake'.
*Amanda is away today visiting family. Leaving Dave in charge. On his own. Help!!!!
Reader Comments
The only important goal for today is keeping everyone alive. So far you're golden. Heh.
This brought a big smile!
Haha! He's ready for Food Network! Love the photo!
Delicious?
Heck, I'll eat anything. I'll be by in a few to have a slice / spoon full / glob.
Snippets 'N Stuff
This is awesome! (hahaha) I love it!
Great Guest Post
I think Dave has great potential as a blogger! Very funny post!
Boy...I can't wait to try this! I only have cider vinegar...can I substitute?
Sending Dave happy thoughts, and hoping the eggs survived the floor!
Hugs,
Wendy
Fantastic! Who wouldn't want a cake with 14 eggs! Delish!
This is too cute. What a great guy, your Billy. Many hugs from Columbus!
Total 8 comments
I love that boy!
Friday April 01 2011 04:34:09 pm
LS
Isn't there some kind of "electric" fish that lights up in the water? Then again, I don't remember seeing one in Nemo (my only source aquatic knowledge), so maybe I'm wrong. If there is such a thing, then Mama needs to get that fish loving boy one. :)
Friday April 01 2011 04:45:06 pm
Ashley
Oh that made me tear up a bit and then laugh out loud about the fish. I so love the way they think! We have to go by those darn fish every time we go to Walmart. I'm running out of excuses not to get a couple to fill the empty bowl from the last time we killed fish...er...I mean lovingly took care of them for their entire lives (about 2 days). I hate fish. Hate.
Still Swimming?
Friday April 01 2011 05:46:02 pm
Big Daddy
That fish is still swimming? Get a handful of rice, slap Eric on top, and invite me over for dinner. Problem solved.
Friday April 01 2011 08:32:55 pm
Maura
Thanks for this post, Amanda. Now I know why my friend and neighbor across the street is floating her blue light. I'm so proud of both of you. Here's to Billy!
So Sweet!
Saturday April 02 2011 01:57:08 am
Cheryl D.
That is a very sweet conversation. I wish having that talk came as easy for our family!
Saturday April 02 2011 10:36:45 am
John
Thank you for sharing that... made me smile. 8)
Shine it!!
Saturday April 02 2011 12:11:34 pm
Dani G
Shine your light, baby!!
Wednesday April 06 2011 08:42:12 am
writerwoman61
Love it! [tear]
My uncle had unicycles, including a six-foot one which he used to ride with my cousin on his shoulders when she was about three...
Hugs,
Wendy
Total 8 comments