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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BCS = Bloody Charlotte Stores

Heather and I traveled on the same flight to Charlotte before heading our separate ways. I thought the Charlotte airport might be a relief, since Fort Lauderdale was still plastered with ND-Alabama-BCS everywhere, but there was no escape, even a couple of states away.

On the people mover, we passed EA Sports first, with its SEC-centric window and Alabama championship t-shirts on display.

Please, God, let us roll past the Tide.

Next door, we noticed the mannequin in front of this boutique was decked out in Alabama red and houndstooth. 

Really?

When we rolled past the next storefront, I was ready to jump off and place an order.

Where's a bottle of Patron when you need it??

BCS = Big Collegiate Shenanigans

I started this post almost a month ago, and then life, work, and the Manti Te'o shenanigans sapped my blogging motivation. I found this post today, and decided that the game day recap deserved to be finished, as a celebration of Mike's awesome Christmas gift.

Game day was in fact perfect, until about the second play of the game. Things got painful after that, but even the score of the game itself couldn't wipe out the fun of the pregame activities.

We began the day with an early lunch at Primanti Brothers, which Heather and her ND friends Dan and Nate knew about and loved from visits to Pittsburgh, and I knew about through Maddie's love of Man vs. Food. Primanti Brothers sandwiches combine the meat and the sides (cole slaw and fries) between two hefty slices of bread. First order of business after their arrival at our table? Photography, followed by Facebook posts.

Food wins: I could only finish half. The other half was my post-game comfort food.

I followed the crowd and posted mine too, because I figured Maddie would appreciate it. As the others surrendered themselves to sandwich bliss, I briefly considered yanking a few chains by making an 'ick' face after my first bite. I changed my mind when I realized I would probably be dumped in the ocean. Primanti Brothers is no joke. It actually was an excellent sandwich.

At the end of lunch, two more of Heather's friends (and fellow ex-Observerites) arrived from Virginia. In itself, not unusual for a team with a national following. But these two left their houses at the end of the Redskins game the night before (about 9 p.m.) and drove straight through. As Heather put it in her blog post for New York magazine, they "still hadn't slept when they cracked their first Yuengling at our tailgate." No, they didn't have tickets. They just wanted to be there. Since they were the only ones with the fortitude to act like they were still in college, they were heroes.

Hail the conquering heroes: The all-night drivers are on the left and right.

The obligatory I-was-really-there photo.

We got to the Orange Bowl early, and discovered (again) that ND outnumbered Bama by a hefty margin in the parking lots. Taligating skills were on full display. What better way to begin the festivities than to run into Manti Te'o's dad in the parking lot. He was friendly, clearly thrilled to be there, and willing to pose for a picture. One more reason to want the Irish to win, I told Heather. Sigh.

(At this point, I like to imagine that to Brian Te'o, 'catfish' was still something you rolled in batter, deep fried, and ate with tartar sauce.)

Te'o-gating.

I am old enough to remember the ND campus swarming with students in Catholics vs Convicts t-shirts during the height of the Notre Dame-Miami hatred. Heather and I ran in to the 2013 version during our tailgating adventures.

Love it.

We also ran into a dude with a giant beer cross. Or a sword. We still aren't totally sure which. Here is Heather pretending to drink from it:

And me being knighted by it.

Good thing I did this before we ran into the chick with the bourbon shots.

Reunited!

Another highlight of the weekend was the chance to see my roommate, Rachel. Both of us were convinced that we would run into more people from our class. Then we realized we were scanning the crowd for 22-year-olds, and that ain't us anymore. That's a good way to sober up quickly.

And then it was time to go into the game. We all know what happened next. I tried to stay on a media blackout for as long as possible, but Deadspin and Manti Te'o made that difficult.

However, we won the Battle of the Bands. (By halftime, we were already grasping at straws.) But what's not to like about a tribute to Back to the Future?

The Delorean. The Irish Guard is producing the smoke.

ND fans outnumbered Bama in one more way. I'd swear there were more of us in the stadium at the end of the game. A family of four Bama fans in front of us left with about four minutes to go. We ran into another one on the escalator right after the game, and when we congratulated her and asked her why she wasn't staying for the trophy presentation, she replied, "Oh, we've been to three of these, and I have to get back to South Beach." Say what you will about Notre Dame fans; we don't leave.

BCS = Bizarre Clothing Selections

Or rather, 'clothing.'

Anything above the waist in this pic is body paint. There was a similarly painted Alabama dancer nearby. A couple of doors down, a drag queen was leading a bar in shouts of, "We are ND!" Hopefully Father Hesburgh's handlers weren't taking him out for some air on South Beach this afternoon.

In other fashion news, we have seen more skintight gold pants this weekend than I thought existed. On the Alabama side, lots of houndstooth and fedoras to go with all the red, and quite a few diamond-encrusted, cowboy-booted women.

 

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BCS = Bringing Catholics to South Beach

Saturday, January 6

1:00 ish

This town seems ready for us:

I like that Manti looks like he's about to sack McCarron.

Do you think NIU's welcome for the Orange Bowl was this enthusiastic?

2:00 ish

Florida is not considered an intellectual heavyweight state. This is the land of the hanging chad, among other things. Floridians can be quite clever when they apply themselves, though.

Heather and I decided to pay a visit to South Beach, the epicenter of the pre-game festivities. Traffic and parking, while never simple, should probably carry a surgeon general's warning when the area is overrun with ND and Bama fans. After a couple of false starts, and after giving some consideration to a sit-down meal at a swanky restaurant just so we could use their valet, we spotted a small parking garage. We'd driven in before we saw the rates: $40 for up to two hours, $50 for 2-6 hours. Prepaid. Too hard to back out, and truth be told, I think we would have paid twice that to GET OUT OF THE DAMN CAR. And of course we ponied up the extra $10, because we didn't feel like watching the clock. We reminded ourselves that we'd paid $25 each, which we've paid for parking at sporting events, amusement parks, or even city garages. That sounded a lot better. Needless to say, we were determined to stay on South Beach for at least two hours and one minute.

Floridians aren't dumb. They just have different priorities.

Less than two hours, one minute later

It's beginning to feel a lot like the Orange Bowl:

 

We posed for some pix in the fan experience also. If the ratio of blue and gold to red on South Beach is any indication, I expect ND fans to be in the majority in the stadium.

 

We also spent some time in a beer tent talking to a random alum from the 60s who showed us pix of his grandson and invited us to his massive tailgater the next time we go out for a game (which, given my track record of returning to campus, could be in fifteen years or so). Every so often, he turned around and called 'borracho!' to a woman behind us who was buying him drinks because she thought he looked like Jack Nicholson. I think borracho pretty much summed it up for him.

 

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BCS = Best Christmas Surprise

Saturday, January 5

10:30 pm

The elevator at the hotel is slower than my grandfather driving through a Christmas light show. (He REALLY liked to savor the lights.) Before we left for dinner, we let the front desk know our room smelled a bit damp. On our way back in, we were in the elevator with a guy holding Febreze, towels, and a to-do list with our room number on it. He got off on the third floor, dropped the towels off somewhere, and arrived at our fourth floor room, Febreze in hand, at the same time we did. Note to selves: Allow 20 minutes travel time to the breakfast buffet.

9 pm

When I looked over the hotel reservation and started to re-orient myself to Fort Lauderdale, I wondered if the hotel was located near one of our favorite landmarks from our time in South Florida. Every time we took 595 from our place in Plantation into Fort Lauderdale, we could see it from the highway: the mausoleum for the Forest Lawn funeral home. Or, as we reverently called it, The Pyramid of Death. We were not disappointed. It's right across the street.



Hopefully it is not a bad omen for the Irish.

The woman at our hotel check-in brightly inquired whether we are going on a cruise. She looked confused when we told her we're here for the BCS championship game.

8 pm

Lots of BCS signage and welcome goodies at the Fort Lauderdale airport, which appears to have spent much of the last decade under construction, with minimal progress. I rounded a corner into what looked like a mostly-finished shopping area designed to look like a cutesy village and saw this:

As Heather put it on Facebook, "It took me an embarrassingly long time to realize this is an art installation, and not just some sad dude in a strange room." Oh, Florida, I have missed your quirks.

5 pm

The crowd at the gate in Charlotte is sporting a lot of ND blue and gold. I feel like I am traveling incognito because I am not wearing anything with Notre Dame on it. I end up seated next to an older couple wearing everything Bama -- the woman has teased hair, red boots, a prairie skirt, red jacket with Bama boutonnière, and an Alabama diamond watch. I resist the urge to play the fight song, helped by the fact that I have to turn off electronics for takeoff.

Morning

I looked at Mike this morning and said, "I'm probably too old to get away with saying, 'I'm going to the 'SHIP, baby,' aren't I?" Even though I already knew the answer, I was still slightly disappointed when he agreed with me.

In my student days, there were plenty of alums to giggle and roll our eyes at on football weekends. Lots of middle-aged men in plaid pants and ND logos who sometimes wanted to visit their old dorms. I wonder whether the alum stereotype has changed since then. Maybe now the students giggle at people like me, who would not be caught dead in plaid pants, but will be carrying around all the same gadgets they have and trying to act like we're still students.

 

 

 

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Holiday greetings 2012!

The Hamiltons opted for an electronic holiday greeting this season. 

Why skip the snail mail? We could talk about the digital age and environmentally-friendly choices, and those would be true. It's also true that December flew by at breakneck speed, and before we knew it the holidays were here and we hadn't even searched our photo collections for a picture. Clearly it was time for a tech-savvy greeting.

Despite the absence of a printed letter, envelope, and stamp, we still treasure our friends and wish everyone a wonderful new year. 

All the best,

Alison, Mike, Leah, Lauren, and Maddie

Talking turkey

Lauren: "How do you like my turkey?"

Me: "That's beautiful, sweetheart."

(As any parent knows, there is only one correct response when your child shows you a hand turkey. A slight backward stagger doesn't hurt.)

Lauren, flipping the paper over: "How do you like it now?"

The kid understands the food chain.

Live Blog, Part the Third

8:55 am:

Power has remained on (i.e., no one has tried to simulate a power outage in our house -- cough -- MIKE HAMILTON -- cough).

Mike is driving to work this morning. No school for the kids. Still chilly and rainy, but all I've seen looking out our windows is some downed patio furniture at a neighbor's house. So we were lucky. There don't seem to be as many power outages in the area as I expected, so I imagine we will all have school tomorrow.

Thinking of all the New Yorkers/ New Jerseyans (?) out there. We lucked out around here.

3:06 pm:

The school I work in follows Prince George's County Public Schools for weather-related closings. PGCPS is open for business tomorrow, which means I will be getting my usual early start tomorrow. No announcements from Anne Arundel County yet, but I imagine they don't want to burn through three snow days before the end of October.

Le Pup had a session with the dog trainer this morning. Unfortunately, I think she smells the experience on him, because she is never particularly happy to see him. Either that, or the breeder graduated her from some kind of Protect the Homestead from Old(ish) Bearded Guys Certification Program. I wonder if or when Cookie might figure out that she's small.

Live Blog, Part Deux

9:25:

Kids were very excited to show us their somersaults. Mark went down to watch and decided to participate. To his wife's chagrin, he emerged from the basement crowing, "I flipped like a bitch!"

His wife tried to convince him that outdoors was the place to be. :)

9:20

My intrepid neighbor Eric went to investigate kid noise in the basement. He came up bearing some very pointy darts, but swears none of the kids got any piercings. Refilling my glass now.

8:15

The power flickered out.

Just when we finished our 'oh, crap' reactions, the power flickered back on. Relief lasted for a few seconds, before the power flickered off again.

This time, when the power came back on, Mike and our neighbor, Steve, stood there grinning. They found the fuse box and decided to have some fun. Steve swears it was Mike's idea (Guilty -- MH). They were called every name in the book before their ingenuity was celebrated.

7:32

My neighbors are underwhelmed by the wind. Mark, who admittedly has has several shots of Honey Jack, declared that the current windspeed is 15 mph, max.

Maddie just dispatched Mike to get her American Girl doll (in her case, more aptly named American Tomboy doll), so that her doll can join Lauren, Shannon, and the rest of the Huntresses.

7:12:

Mark Taylor: : "What's wrong with us?" (I.e. men?)

For those two or three of you reading our humble blog, feel free to post your thoughts.

6:40 pm:

RsLatest power-outage scare: Lights go out in kitchen at neighbors' house. Adults jump six feet in the air and wonder where the flashlights are. The Hamiltons are less fazed, and inform the assembled gathering that it is not BGE's fault. Leah is flipping light switches. Drink refills all around.




 

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Hurricane Sandy live blog

To keep everybody up to date and maybe have a few laughs (as long as we have power). ...

6 pm: 

Off to the neighborhood hurricane party across the street! Our neighbor Mark has already posted on Facebook about his liquor stash (vaulting him to the top of our List of Houses to Loot if the Worst Happens), and is now making hurricanes in honor of today's weather disturbance. It takes more than 45 mph wind gusts to deter the Putnam Lane Driveway Drinking Society (or in this case, the Putnam Lane Get Away from the Windows Society).

5:14 pm:

Maddie says to her friend Emily via FaceTime: "Guess what I can do with my pants?"

Since I don't want to be arrested as a purveyor of internet porn, I decide to check what is happening with said pants. Luckily, her broadcast-worthy trouser feat was pulling the waistband up to her armpits.

Whew. A mega-dork, instead of a perv.

4:55 pm:

Last look today at Patio Lake.

4:40 pm:

So you're saying it isn't over?

4:30 pm: 

Facetiming with a friend down the street about how bored they are.

3:33 pm

Lights just flickered. One possible plus to a power outage: Leah is currently stimming on PBS Kids. Losing power would end my daydream of asking Lauren and her merry band of American Girl huntresses to take out the television.

3:30 pm

The rain is steady but not too intense yet.

3:15 pm: 

Lauren is teaching her American Girl to hunt, aided and abetted by her friend Shannon. Maybe that's the next Girl of the Year -- Artemis, comes complete with bow and arrow set, wall-mountable stag head, and chastity belt. Who wants to volunteer to write the required four-book set?

3:09 pm: 

Mike gave the mutt some peanuts. Cookie expressed her thanks by barfing on the couch. Thank God for IKEA couches with removable slipcovers.

2:50 pm:

Provisions check. Looking grim.

1:55 pm:

Hardware out, Maddie has her first popcorn in more than a year.

1:25 pm:

The wind is starting to pick up.

11:45 am:

The rain is picking up and our usual patio lake starts to form.

10:55 am:

On a conference call from my kitchen office (yay, unused outlets).

10:26 am:

Maddie's orthodontist moved up her appointment from tomorrow so the lip bumper and palate expander come out at noon. Just in time for chewy Halloween candy.

10:13 am:

For the handful of people who have not seen this one on Facebook. It came in via e-mail this morning:

10:05 am: 

One foul-weather perk: Cookie is extremely mellow. No sitting on my head, no arguments with the Swiffer, no standing on the deck protecting the homestead from random noises.

10 am:

It's not really raining right now. IS THAT ALL YOU GOT, SANDY? HUH?

(Runs inside and hides under bed)

9:20 am:

Even better: Hurricane bacon and pancakes!

9:13 am:

Hurricane bacon!

9:03 am:

Did I remember to mention that Notre Dame is 8-0? No? Well, GO IRISH!!

8:47 am:

As long as we're blogging, we might as well play a little Hamilton family catch-up. Maddie has revised her previous stance on having babies.

Not too long ago, she announced, "When I'm ready to have babies, I will go to the orphanage and ask for a boy who's potty-trained. Diapers are gross."

8:12 am: 

Um ... I need to go NOW. This is the routine, right?

So far, not much wind but a fair amount of rain.

Why a cure?

One of my favorite events in May is the autism walk at our local high school. The freshman class earns required service credits, and TACA earns some much appreciated fundraising dollars. I get to put on my official shirt and tell an auditorium full of teenagers about autism during the pre-walk assembly, hopefully in a way that resonates with them after they leave the room.

Arundel High School educates a spectrum of teens with autism, in both the functional life skills program and the general education classes. I knew going in that a few of this year's walk participants have autism themselves, and it made me wonder how they might feel about the word 'curing' in TACA's name. Not everyone loves a group that talks about a cure. Now and then, I'm unfriended on Facebook, or a comment reaches my ears that TACA volunteers are off the wall or simply terrible people. That's fine. I can take it. I wanted this audience to understand one of the basic truths of my life: I can advocate for treatments and even cures and still love my child just as she is. The two coexist just fine.

After introducing TACA, saying my thank-yous, and telling them they are the best class ever (as I do every year), this is what I told them:

What do we mean when we talk about curing autism? I'll tell you what it doesn't mean: It doesn't mean taking away the unique gifts some people on the autism spectrum have. Kids with autism are some of the funniest, smartest people I know. Some have gifts in music or in art, or can do cool things that most of us can't. I don't want to take away who they are. But I would love to make it easier for them to sit in a classroom where people are crumpling papers or tapping pens -- all the noises you probably hear in your classes every day -- without wanting to come out of their skins. 

But as you've already heard today, autism is a spectrum. I see some people wearing the light blue walk t-shirts. I've also see plenty or darker blue shirts out there. All of those shirts are blue, but they are a lot of different shades of blue. The autism spectrum is like that too. On one end, we have the people with unique talents. In another place on the spectrum are people who have trouble expressing themselves. 

Imagine for a minute the last time you were sick. You've probably all had a day this year when you woke up in the morning and didn't feel well. Maybe you had a sore throat, or the flu, or a stomach bug. You wake up in the morning and you know you can't go to school. What's the first thing you do? You come downstairs, tell your mom or dad, 'my throat hurts,' 'my stomach hurts,' 'I have the flu,' 'I have the West Nile virus.' 

But what if you can't talk? What if you don't have the skills to express how you're feeling? How will you let people know you're sick? If you have autism, and you can't talk, the adults in your life probably use a lot of picture schedules and checklists to tell you what you need to do every day. Even while you're feeling like you might throw up within the next two minutes, you have someone waving something in your face, telling you it's time to brush your teeth or it's time to do math, when all you want to do is curl up and wait to feel better. Imagine how you might react to that. You might throw that schedule right back at the person who's giving it to you. I know kids who have banged their heads against the wall when they're in pain, or who lie on the floor and cry or scream, because that's what they can think of to do when something is wrong. My daughter can talk, but she's not good at telling me how she's feeling. Sometimes I can't tell that she's sick until she gets upset. That's hard for me to deal with, but a million times harder for her. 

As freshmen in high school, you've probably all had a lousy day at school before too. Maybe when you arrive home, you tell one of your parents about this kid who was messing with you, or that teacher who yelled at you. Your parents probably try to find the right words to comfort you, but as a parent, I can tell you that inside they're sad. It hurts them too because they love you.
I can also tell you that if and when my daughter is able to do that with me, inside I'll be cheering. I will try to say and do all the right things to comfort her, but if you hear the sounds of a party coming from Crofton, that will be me. Not because I like seeing my child unhappy (I don't), but because I will know that we have found one of the biggest pieces of our autism puzzle. If she can tell me when something is wrong, my job to keep her safe, healthy, and happy just got a whole lot easier. Those are the things we need to cure.

I'm not trying to create a cookie-cutter child, or the prom queen or the class president. I'll settle for a long conversation. I talk with doctors and specialists and other parents because in the end, I want to talk to my daughter.

Leah's portfolio: The Phineas and Ferb series

We added an art class to Leah's Saturday social skills group at The Autism Project. Little did Ms. Angelique know that Leah would make Phineas and Ferb the subject of every project.

At home, she often likes to subject her stuffed toys to a photo shoot. I find new poses on my iPhone camera from time to time.

I have no idea why the socks are important. Right now, wherever Phineas and Ferb go, the fuzzy socks accompany them.

Her first art class assignment was to create something out of cut/torn paper. No drawing. A challenge for our girl, who loves her paper and crayons. It was her first time creating art like this.

Loved this one. One of Ferb's feet was a casualty of the wind that day.

Another week, the kids were told to create an object with masking tape and color around it. She tore off little bits of tape and made a masking-tape Phineas and Ferb.

Then they had to remove the tape. Leah said, "Where are Phineas and Ferb?"

She picked up her crayons and restored order:

The series continued:

One week they had to draw feelings. Phineas and Ferb experienced a range of emotions:

The second part of that day's project was to depict two feelings on two sides of a mask. Leah made two sides -- one was Phineas ...

... and the other was Ferb.

She threw a fit during the origami activity on the last day of class. I have a feeling she was annoyed that she could not find a way to add to her Phineas and Ferb collection. Not even the prospect of making an origami Hello Kitty cheered her up.

To borrow a quote from the theme song, "Seriously, this is Ferbtastic."