More thank yous, and a few hurdles

My first thank you has to go to my Enabler-in-Chief, my sister Heather Cocks. I mentioned my 5K scheme, and she agreed to take me running (the first time I've willingly run anywhere). So I tried it, on a nice, dirt track during our trip to California, and I didn't keel over. If she found her older sister pathetic, she hid it well, and she enabled me even further with a donation soon after I went home to Maryland. Of course, this is the sister whose Cabbage Patch doll got a really weird nickname (courtesy of me), and who was briefly nicknamed Young Ploppy after a character in Blackadder. 

Maybe Heather's support is not so benign after all.

In keeping with this year's track and field theme (what good is a theme if you can't exhaust all possible metaphors?), I hit a hurdle pretty soon after I got home from California. One look at my donation page told me I'm going to have to actually learn to run for real, since I'm more than halfway there.

My intestines had other ideas. 

A week ago Friday, I ended up in the hospital with a bleeding ulcer. Two nights, two units of blood, and two days on clear liquids later, and I was discharged with some stomach-healing meds, orders not to take up smoking, and strong suggestions that I avoid spicy, acidic foods for a while. No activity restrictions, but a warning that, due to the anemia that has accompanied the ulcer, I might not have a lot of endurance, and I should be prepared to take it easy.

(They also asked whether I have a lot of stress. Um, yeah. I mentioned that if they didn't manage to discharge me by Monday morning, I would be attending IEP Round 4 with my IVs still in my veins.)

They were right about my endurance. It isn't pretty. A half hour's worth of physical activity and I'm ready for a nap. In one of life's great ironies, I have a perfect excuse not to run anywhere, and I'm annoyed about it. Where was this about 30 years ago, when every gym class was a nightmare? My donation totals tell me I'm probably going to have to do this, so on I go, maybe a little more slowly. Twelve-year-old me would not approve at all. 

That means it's time for some more thank-yous. Sort of. These are people who knew their donations were pushing me toward the starting line. 

Ginny Reed. My aunt, who is either really supportive of Leah, or found a way to let me know I was never her favorite niece.

Heather Taylor. My athletic neighbor, who offered herself as a running partner. I've played Bunco with both Heather and one of her frequent workout partners from her gym. Cheryl often complained that whenever Heather had a few glasses of red, she devised new, torturous workouts for them. Which means the next time I see her carrying a bottle it's going to be time for some sprints. 

Colleen Sugar. We worked together at The Dallas Morning News, my first job out of college. She was a great colleague. Did I steal too many office supplies from her desk?

Diane Kirk. Diane is a runner herself, an autism mom, and a Health/PE teacher who organizes an autism walk for her freshmen every year and directs the proceeds to TACA. A runner herself, she offered to do this as-yet-unchosen 5K with me. We could do a re-enactment of The Tortoise and the Hare.

Chris Lucey. An old friend from Notre Dame, who lettered in track there. Thank God he lives too far away to watch any of this.

Dan Cichalski. A fellow ex-Observerite from Notre Dame, although he was there with Heather, not me. I expect to see him at the finish line with a Primanti Brothers sandwich.

Seriously, TACA families appreciate your donations. Your help keeps our families moving past hurdles of their own. Our page is still live, until June 30.

Deep gratitude

Before I start 'thanking' the people who donated to TACA on our family's behalf after I announced my 5K plan, I'm going to express my gratitude to my first donors, who I am reasonably confident are not motivated by a desire to torture me.

• My mother, Kathie Cocks. OK, she might owe me a few hours of punishment. If I had announced this before she gave her gift, she might have funded the full amount. Seriously, though, she is an amazing grandmother to Leah, completely supportive of everything, and even willing to do overnight babysitting and give supplements. That may seem like the world's feeblest compliment, but trust me, it isn't. Sadly, I have met autism parents who tell me about grandparents who are unwilling to be left alone with their autistic grandchildren. We know what we have, and we're grateful for it.
• Isaac and Sheila Heimbinder. The Heimbinders lived down the street from us when I was in elementary school. They have been generous to TACA every year since our chapter formed. They saw a few of my attempts to play sports as a kid and if they've read about the 5K plan, they might be thinking, "Yeah, right."
• Chris and Christine Donnelly and John Blasi and Kathy Stohr. Unfailingly supportive every year. We go back to college and late nights at The Observer (longer ago than anyone cares to admit). If they'd known about the 5K, they might have kept their wallets closed. They've seen me stumble around enough already.
• Debbie Wetzel. Debbie runs Partners For Success, which is a great source of information and assistance for parents of kids with all types of disabilities in our county school system. Their lending library is great, convenient, and free. Debbie comes to our meetings when she can and spreads the word about our chapter.
• Eric and Kera Matsui. They moved in down the street last summer and they already fit into our neighborhood like they've been here for years. Their families might want to stage an intervention.
• Mike and Leslie McQuade. See above. Only difference is, they live across the street.
• Cheryl Peeples. An amazing mother warrior. I met her at an Autism One conference several years back. I'm hoping to get back to another one sometime soon, and when I do, I hope she'll be there.
• Steve and Melissa Slatnick. Great neighbors, great supporters of our family. If I'd asked Steve's advice, he probably would have suggested a bike ride instead of a run.
• Ben and Jonnie Dorman. Cherished friends from my family's time living in England. Lauren and Maddie had great fun meeting their grandchildren on our recent trip to California.

I try to do 'real' thank you notes too, which I usually save until the end of the campaign in June, when I can report our total. In the meantime, maybe a virtual shout-out isn't too much of an etiquette violation? Thank you all for your gifts to TACA. Our page is still live, until June 30.

Autism is definitely not a sprint

Two things are high on my to-do list this spring: Exercise more, and kick off the fundraising for our Talk About Curing Autism (TACA) chapter. I had a brain wave one day (I know, yikes) and decided to combine the two. So here's my pledge: If I raise $5,000 by the end of May, I will run a 5K in June. That may not seem like much, except that I have spent most of my life avoiding running anywhere. It's usually not pretty when I undertake any kind of athletic endeavor. If you ever took a PE class with me, you know this already. In short, I have found a way to make autism truly feel like a marathon.

So, if you want to make a donation in honor of autism awareness month (or to get a tax deduction before April 15), you can visit our family's page at http://faf.tacanow.org/2013/MD/leah/. If you want to imagine me running around Crofton, grumbling all the way, click on the same link. Also, check back here every now and then. If I have to train for this thing, I will probably be writing about it (and possibly 'wimping and whinging,' as my dad would have said).

World Autism Awareness Day

Today, the eyes of the world are supposed to turn toward autism. Autism Speaks actually uses the word 'celebrate' in connection with its Light It Up Blue campaign, which draws participation from notable landmarks like the Great Pyramids of Egypt, the Sydney Opera House, and even Reunion Tower in my former home of Dallas, Texas.

The pictures look pretty, if you like symbolic gestures. The use of the word 'celebrate' in connection with an epidemic disturbs me. We're now at 1 in 88 -- or 1 in 50 schoolchildren, according to a recent study. The kids we're celebrating are going to get awfully expensive once they start aging out of the school system.

Does that mean we don't celebrate our beloved Leah? Quite the opposite. We celebrate who she is in spite of her autism. A couple of weeks ago, she was poked and prodded at a clinic at Kennedy Krieger, told what she could eat and when, and stayed still for blood draws even as the techs muttered things like 'tough stick.' Leah is my hero.

People with autism can be some of the most uniquely gifted individuals around. I will happily celebrate a kid's perfect pitch. I have applauded and been genuinely in awe of a couple of students who, when given a date (past or future), can tell you what day of the week it falls on. I can think of a couple more who will be graduating from sought-after magnet programs in our local school district. I am thrilled to watch them advocate for themselves. People with their gifts are often the ones you'll see representing autism during all of the awareness events.

Their achievements are celebration-worthy, but they only tell a fraction of the story. True autism awareness means looking past the blue buildings and thinking about what life might be like for people across the spectrum. Trust me, we are aware of autism in our house every single day.

We were aware of autism during our California vacation this week, when one of the Phineas and Ferb dance parties at Disneyland did not go off as scheduled. Other park visitors were too. During later shows (we were front and center for all of them), Phineas and Ferb themselves were quite aware, as Leah edged closer and closer to them with every song. Thankfully they -- and the accompanying Fireside Girls -- treated Leah with good humor and compassion. At the end of that day we were aware again, when we had to leave the park rather abruptly, because Leah was done for the day. We know the consequences of pushing her too hard, so we listened when she said she was done, even though we had to 'disappear' without a proper goodbye to some very old, cherished friends.

My sister and her family were aware a couple of times during our visit this week, when Leah woke around 2:00 am and decided it was the right time to play the piano. Sometimes parents don't get much sleep when they're trying to safeguard the rest of others.

Not long after we get back, we'll be in a conference room again for our next round of school system warfare. I'm pretty sure we've raised some awareness among our Facebook friends with our IEP-related status updates. This next round should be the decisive one. The overarching theme: Schools can be spectacularly ill-equipped to work with ASD kids. Districts will make tremendous efforts to avoid admitting that's true, until it becomes painfully obvious to everyone that their efforts are a lot like putting lipstick on a pig. By then, a lot of time has been lost.

Amid all of this awareness, we work hard to have hope. Sometimes it's easy. The contentment on Leah's face as we ride the ferris wheel on Santa Monica Pier and her excitement as her feet touch the Pacific Ocean remind us that she has the same capacity to enjoy her life as the rest of us do. Those are the moments we celebrate. Not Leah's autism, but the moments we see through it to the beautiful soul inside.

If you want to honor families with autism this month -- or any other, because facing autism is definitely a 365-day proposition -- please consider a donation to an organization that helps families. Since 2008, I have been a chapter coordinator for Talk About Curing Autism (whose founder, my friend Lisa Ackerman, also blogged about 'celebrating' autism). I give TACA my time because their resources go where they're needed most -- toward supporting families. Our family's annual fundraising page is online, and includes a written update and a video. Please pay us a virtual visit, and help us honor Leah -- the person, not the diagnosis.

 

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