a mostly awesome day in the life

;

~

I had a LOT of trouble dragging my sleepy butt out of bed this morning, so we’re going to have to do this quickly. You know what that means, right? Questionable grammar, a high likelihood of typos and a lightening-speed round-up of things I want to tell you without a whole lot of detail to back any of them up. So, in no particular order, these are some of the things that have happened in the last 24 hours.

And, go …

**

I finally managed to sit down and answer some insightful interview questions from a woman named Jamie Pacton, who writes for a magazine called Autism and Asperger’s Digest. It’s taken me nearly a month, so that was kind of an accomplishment and felt sort of awesome.

**

When I asked folks to donate money to our walk team, I’d added a little incentive by turning it into a raffle. For each $25 that they donated, they got a chance to win either a Canon Elph camera or dinner for two at the restaurant of their choice. On Monday night, we put the names into a hat (well, actually a bag cause it was easier) and Brooke pulled one out. It was my boss, which was sort of a little awkward at first. But truth be told, he’d been very generous and therefore odds were in his favor. (And no, I’m not kissing ass cause he doesn’t read my blog, I assure you.) Anyway, when I told him that he won, he asked where the prize was coming from. I told him that it was from me, so he just had to tell me which he wanted and I’d get him set up with it. To which he responded, “Then I’d much prefer that you take the money and donate it to the charity.” Which was, well, awesome.

**

I had an absolutely fabulous e-mail exchange with an autistic young adult who reached out to me via my post yesterday. I didn’t ask her if it was OK to share our conversation, so I won’t. But I will tell you that she asked if it would be OK to write directly to Brooke and I said “Of course.” and then she did and well, the whole thing was just filled with awesomeness.

**

I met Elizabeth Warren, who is running for Senate in Massachusetts. And it was pretty much awesome. I already wrote about that last night, so we can save a little time.

**

Katie sprained her ankle at school and is on crutches. Again. Which is not awesome at all.

**

After dinner last night, Brooke climbed on my lap and stayed there for nearly half an hour while Katie finished eating. (Apparently a sprained ankle is a real hindrance to eating at human pace.)

We sang and we played the Baby Mama game (not to be confused with a baby mama as in a baby daddy, but where I am the kid and her way of conveying that is to call me Baby Mama) and she was the mama and then she was a teacher and there was just all kinds of awesome pretending going on.

And then we made up funny names for Katie who pretended to be mad but couldn’t stop herself from laughing. And then Luau got into it too. And we all laughed. A lot. And that was definitely awesome.

**

My friend Rachel, who you might remember changed the lives of THOUSANDS of military families with autism, did THIS. Which is a million kinds of awesome in the face of something that’s really not awesome at all. Cancer sucks.

**

I got this in my inbox three times in the space of ten minutes.It was posted on Rethinking Autism’s Facebook page.

(Please click to enlarge – the other choice was so big it took up the whole page)

Which didn’t exactly scream awesome. So I sent it to Liz Feld and some other folks at Autism Speaks asking them to really, truly give it their thoughtful consideration. “I think.” I said, that “there are valid concerns here, especially re “cure,” as we’ve discussed in the past.” I went on to say that I believe that “it is illustrative of the perspective (and anger) of a large and growing swath of our community.”

The words felt pretty lame, but I realized that nothing that I could say was going to be enough.

And then I wrote back to one of the women who had sent it to me.

It’s a process.

Rock.

Hill.

Pushing.

And we decided that we needed to get t-shirts that said that on them. And call ourselves the Mama Sisyphus Club. Which would be awesome. Except not really.

**

Katie’s bake sale entered a whole new territory. She’s pushing up on $3,000 raised now and is chomping at the bit to come up with the other $2300 or so that she needs to buy the ICU a specially made Wii system that can be used in there. The best part of all of this is that it’s become a team effort. It’s gotten far too big for us to handle alone, but it looks like we won’t have to. More on that later. In the meantime, in case you missed it on Facebook, here’s Katie in her own words ..

I know she’s my kid, but well, I think it’s pretty fair to say that she’s awesome.

**

I finally got to properly thank the reader who gave me this shirt the night before the Boston Half. I’m sure we can all agree that it’s awesome.

Thank you, Rebecca!!

(And I actually worked out in it. Like in a gym. Sweating! Which was DEFINITELY awesome.)

**

Oh and then there was THIS.

Which is too many kinds of awesome to count.

If he wins. Cause if he doesn’t, my husband running around looking like this?

Not so awesome.

**

I got THIS in the mail …

Now here’s the thing. I don’t do reviews and I don’t take freebees. (Nor do I judge those who do, it’s just not my thing and I don’t have time.) BUT, I took this. Wanna know why?

Because it came via a request from my dear friend, Jen at Make-A-Wish. See, this company, Straight Talk Wireless is encouraging consumers to go to their local Walmart to show their support for Make-A-Wish by taking part in a brief demonstration of a Straight Talk Wireless Android smart phone. For every shopper who participates, Straight Talk will donate $1 to Make-A-Wish, with the ultimate goal of $1,000,000.

The event will take place over four consecutive Saturdays starting September 22, 2012 at over 3,000 participating Walmarts under the banner “One Minute One Million.”

Learn more about it all HERE.

And now, y’all have to help me figure out what we can do with the phone. It’s seriously nifty. Do I raffle it off for Make-A-Wish? Do I give it to one of you to review and enjoy? Can we incorporate it into the bake sale in good conscience? Your awesome thoughts are much appreciated.

**

Lastly, we may have actually found a picker that maybe, possibly, seems to be, Oh dear God, Jess don’t jinx it WORKING for Little Miss (so that she’ll leave her beautiful face alone.) Which would be the awesomest of all. But I’m not going to talk about it yet, because we all know about the curse of the overconfident mom. So we’ll have to get back to this one.

**

And that’s it, my friends.

Just one (mostly awesome) (and unedited) day in the life.

Now off to work.

;

Ed note: And I wonder why I’m tired?

22 thoughts on “a mostly awesome day in the life

  1. I loved this post! I always love to read anything in list form. 🙂

    I’m nervous about writing this about the Autism Speaks letter, because I don’t want to be a traitor to this community that I love — but I just wanted to say that there are some people who have had only good experiences with Autism Speaks. I completely understand and agree with the idea that we should try to stay away from “disease/cure” language, but I’m comfortable saying that those words don’t feel that far off for us. “Self-advocate” feels like a fantasyland that my little boy will never even get close to.

    • Oh, honey … Respectfully sharing your thoughts will never make you a traitor to this community. That just makes you an active participant in it.

      Please, please read some of my earlier posts about Autism Speaks. I support them because I think they do some incredible work – a lot of which goes unrecognized because they continue to use the language that they chose in the letter above.

      I engage them because I desperately want them to get it right.

      I’ve had countless conversations with so many folks there about the word cure and why its use will always ensure the loss of half their intended audience (not to mention its effect on autistics vis a vis public perception of autism.)

      I get seeking a ‘cure’ for the disabling aspects of autism. I’d kill to ‘cure’ my baby’s anxiety, her frustration, her isolation, her difficulty communicating and learning and on and on. But I don’t feel the need to therefore say that I want to cure her autism or to rid the world of it.

      The thing is, there are lots and lots of people out there who take pride in their autistic identities and not only do not I want to tell them that’s not ok, I really want to encourage and support them so that there will be a thriving community that can welcome my daughter as she grows up and make her feel good about who she is. Autism and all.

      So I’m not categorically slamming Autism Speaks by any means. I’m just asking them to really listen and to strive to represent the whole of the community.

      Thank you for sharing your thoughts!!

      Jess

      • Ok, I totally get it now — this makes complete sense. I wasn’t making the distinction between “curing autism” and “trying to help my little dude with the disabling parts of autism while still accepting and celebrating every part of him.” Thank you for clarifying! Hope Katie’s ankle is on its way to feeling better!

      • Yes!!!

        “trying to help my little dude with the disabling parts of autism while still accepting and celebrating every part of him.”

        Yes! Yes! Yes!!

  2. I’m with G…hoping for lots more laughter with your family; it’s so good for the soul! Katie = apple>>tree. But you know that! Hope her ankle is better soon!

    • I knew the Mama Sisyphus Club didn’t sound right! I told you I’m tired damn it. This rock didn’t get any lighter over night ya know. 😉

  3. the nifty freebie phone should go to the awesome individual who makes the donation that finally puts Katie over the edge in getting raising enough to meet her wii goal… or, to the awesome pre-teen ( who I’m sure – like every 11 yr old I know – thinks she NEEDS her own phone… ) who cme up with this fundraising idea all on her own. Cause any kid grown-up enough to do that much for others needs a way to coordinate details in style. 😛

  4. That’s a long damn day.

    I got the letter a lot too. I wasn’t in love with it. Mostly it made me feel tired. I recognize the genuine anger and the actual legitimate issues that drove the “markup” but it reeked of politics and boilerplate and mostly irritated me. And I’m no AS apologist.

    She needs one of those fancy thermometers that shows how close she is to her goal. They’re fun.

    • I agree. And in a perfect world, the message might be a little more constructively delivered. But I understand the anger that drove it. It’s frustrating. And tiring. And it gets old trying to explain why it’s so hurtful again and again.

      So I sent it to Liz et all because boilerplate or no, I don’t want them to miss the very real issues that it raises.

      And a thermometer. Hmm. I like that.

      😉

  5. I automatically tune out Autism Speaks. Turn off the radio, the TV. I choose not to fight that battle. I have issues enough and the only thing I’d change about myself is to figure out how relationships work. I don’t want to die alone. Right now, life is work, keeping up with the guinea pigs, spoiling my best friend’s baby and my forthcoming niece (how babies managed to bring me out from the bottom of that depression, I have no clue. Babies have magic). I would like to socialize but cannot because of the hyperactivity (people don’t understand and my anxiety is just one of those things I’d love to banish with the hop of a wand). There has to be more than this life, but it is all I know. So, no I don’t fight that battle. Like political ads or news on TV, it makes me depressed. For all the things I wish I were, cured isn’t of them. Who I am isn’t a crime or a disease. It’s more than the universe times 3. And if you start looking at people as a cost, then you’ve started loosing humanity. One cannot put a price tag on humanity. That’s why I get so upset with Autism Speaks.

    I’d love to donate to Katie’s cause, but the bank is a wee bit low on funds and will have to wait until the tenth to figure out my budget and see if I can donate a dollar or two. Know that I am silently cheering her on 🙂

    • Oh, Serenity. Thank you for this. And please don’t feel pressure to send money. You’re support and good wishes are more than enough!!!

  6. Can I post Katie’s original letter or latest one on my facebook page? I love reading your posts, makes my day seem on par.

  7. As if autism parents don’t have enough to contend with; there is division among the two camps; those who believe autism is genetic and those who believe autism is a biomedical condition related to various causes such as heavy metals in vaccines and/or immune system irregularities.

    The research battle wages on and while there is no clarity, no research has ever been able to find the genes that cause autism or any clear physical cause, despite lots of monies being thrown at both theories. There is recent research who could only find a 70% concordance rate between identical twins which may point to both genetic and environmental causes.

    None of this made any difference to me when I had a child disagnosed with Pdd-Nos at age 3.0. To say we were devastated would be to state it mildly and unlike many of Jess’s beautiful posts about learning to accept it, nine months after her diagnosis, I still had not. Not judging those who can, just reporting I could not.

    I had previously worked in the children’s ward of a hospital as a child therapist and was aware of the doctors negative view of biomedical treatments for autistic children.

    But I thought if there were no known cure for autism, what did I have to lose? And IF autism is a disease like diabetes then celebrating autism seemed as foreign to me as well….celebrating diabetes and let us be honest…who do we know who does that?

    To make a long story short we did engage in biomedical treatments starting shortly before age four and my daughter was a huge responder to them. Slowly over a 4 1/2 year period my daughter not only lost her diagnosis but went on to start kindergarten with no aide and no modifications to her school work..

    She is now in the 6th grade still doing spectacularly both cognitively and socially and I would put her pragmatic language skills up against any adults. All her anxiety is gone except for the small part that keeps her motivated like anyone else. She has a group of many friends and there has not been a complaint by any teacher. There is not one semblance of autism left. Was she cured? Sure seems like it to me.

    We never did any therapy of any kind, other than biomedical; no OT, PT or ABA. We did play with her alot but that hardly felt like therapy.

    I realize I have practically written something as long as a blog post here but I think it’s important to keep an open mind about not only the cause of autism but what any individual child will respond to over the course of early childhood.

    I have known many autistic children who responded very well or improved with biomedical treatment and I have known others who did not.

    Because the improvements we saw took place slowly over time coinciding with biomedical treatments, I have little doubt that my daughter would still be autistic had we not intervened.

    Autism or not, I love my daughter but I am glad (understatement) she no longer has to contend with autism and I don’t know a parent who would choose the path for their child. I hope everyone works to keep an open mind about the causes and “cures” of autism.

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