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."

New numbers, same reality

 

One in 88 hit me hard.

I wasn't surprised, sadly. This isn't the first time since Leah's diagnosis that the autism rate has taken a jump in the wrong direction. But this one felt more personal. The CDC calculated one in 88 using children born in 2000. Maryland was one of the states in the study, and our school district was one of the ones surveyed.

Leah was part of this new equation.

The announcement came with the CDC's usual platitudes about better diagnosis, and my usual frustration that the majority of US journalists parrot this information without questioning it. Interview a group of veteran special educators, and they'll tell you what the government and the medical community refuse to acknowledge: A couple of decades ago this was a far, far rarer disorder than it is today. The claims of better detection and diagnoses imply that there are significant numbers of adults with autism who have been mislabeled or have never been found. I'd love to see just one journalist choose to look for them, though I know how that story will turn out. They won't find much. If Leah and her special education classmates were 10, 15, or even 20 years older, there still would have been no mistaking them. They are children affected by autism.

It pains me that a growing number of families will be walking this walk, while we wait for more people to ask the right questions. When I read the news, I wonder how many of the reporters have looked away from the numbers long enough to contemplate what it's like to live in a family of a child with autism. If a reporter ever calls, I'll be happy to talk.

I'd tell them about Leah's younger sisters, twins, who practiced crawling in waiting rooms. They still look with envy at the gym equipment at the occupational therapy clinic. Therapists have come in and out of our house to work with Leah since Lauren and Maddie were born. I wonder how many families would welcome the idea that every one of their child's teachers comes through their front door, sidesteps their clutter, glimpses sibling squabbles, sees every incomplete chore, and hears snippets of phone calls now and then. Luckily many of Leah's therapists have welcomed all three of our children into their hearts, and even reconfigured plans sometimes to accommodate little sisters who hate to be left out. If you want Hamilton gossip, bypass the neighbors and go straight to the therapists.

I'd point out that the therapists don't work for free, although many of them have been worth ten times their salaries. Leah has been on a waiting list for more than seven years. When her number finally comes up (this summer, we hope), we'll have some funding to help her, almost nine years after her diagnosis. Our insurance doesn't cover the home therapies, which are funded from our own bank accounts, with help from extremely devoted grandparents. We pay out-of-pocket for specialists who charge hundreds of dollars an hour. They don't take insurance, but they do know autism (as much as anyone does), so we rely on them to understand our daughter's body in ways our pediatrician does not. Lab tests, supplements, prescriptions? Hundreds a month, even with insurance.

I'd probably suggest that Leah's social skills teacher (who also directs the work of the aforementioned therapists) is newsworthy in her own right, for the fantastic progress her students make. We drive 45 minutes each way every Saturday morning to take Leah to her group. Miss Angel (yes, really) has been part of our lives -- no, part of our family -- since Leah was four. Weekend sports and activities have to fit around the group schedule. Family outings? Not on Saturdays.

Not that family trips are all that relaxing. We think about exits before we arrive at entrances, and play a Hamilton version of zone defense. The parent covering Leah may have to leave a movie early or sit on a museum bench until a meltdown plays itself out. Disney World was the happiest place on earth for us until Leah was done for the day. Her way of letting us know was to throw her shoe overboard on the Small World ride. Enough years have passed that I can laugh about the time she came down the slide at Chick-Fil-A buck naked. At the time, I mentally cursed the glass playground enclosure and sent one of her two-year-old sisters up the structure to find her clothes. Her days of indiscriminate stripping are over, but she hasn't discovered modesty yet, either. Think Adam and Eve before they wanted fig leaves. Cute when kids are two or three. Leah will be 12 this summer.

I'd challenge anyone who asks to walk in the shoes of a sibling, who might find herself in the wrong place during a meltdown, and come out of it with a torn picture, a thrown toy, or a whack on the arm. Picture a child so anxious, she stopped talking to anyone for a couple of very long months, and took a couple of years to resume talking to friends. Imagine wondering, as a parent, what you could have done better to make that child feel safe.

While I could give a reporter an earful about the stress, the cost, the thousands of ways a family with autism feels utterly alone, I'd be leaving out part of the story if I withheld the moments of genuine joy, unlike any we might have experienced without autism. Leah's sense of humor and her capacity for love were not stolen by her autism, and she is probably happier overall than most 11-going-on-12-year-olds. We don't argue about clothes. Her fashion sense is simple, and easily satisfied -- if it's blue, or has Hello Kitty on it, it's good. The only time she shows interest in a cell phone is when she borrows mine to play games on it. When she looks me right in the eye (yes, she can do that) and says, softly, "Mommy," I cannot imagine my heart feeling more full. She will seek me out, always, even during the years when Lauren and Maddie will find my presence in their world annoying. I have a feeling that will be a huge perk.

This is what life with our 1 in 88 is like. Ask another family, they'll tell you a different story, with a few similar plot points: Not enough funding, not enough answers, not enough urgency from a government that will one day have to step in and take care of a lot of these children. The numbers are new, but the reality is the same.

If you want to help families with autism, visit our Family and Friends fundraising page. Once again, we are supporting TACA.

 

 

My nephew thinks I have an eating problem

During my visit to California in January, Liam insisted that my lap was the best seat at the table, and decided he needed to help me finish my dinner.

Catch-up: Halloween highlights

One very girly bunny.

One not-girly dragon ninja. (Can you say, 'fraternal twins'?)

One Mimi, delighted to have a turn with the bunny ears.

Hello Kitty returned for another year.

Leah was all business when it came to trick-or-treating.

Mike was especially excited to donate one of his new steak knives to our pumpkin display.

This pumpkin was done with Auntie Julie in mind. Her favorite thing about Halloween is the prevalence of spiders everywhere. (Her nieces loved sending her pictures of this one.)

One hungry cannibal pumpkin. Maddie was kind of proud to donate the clothes for this one. It took the sting out of finding a hole in one of her favorite pairs of pants. 

The full bloody display. 

After their buckets got heavy and their legs got tired, the twins decided it was time to help give some candy away.

Mimi looks beat, but her granddaughters are still functioning thanks to a combination of adrenaline and sugar.

Catch-up: End-of-summer fun

Mike took Lauren and Maddie to Dallas for some end-of-summer fun. They had quality bonding time with their cousins, as well as a true Texas experience -- great Tex-Mex food and blistering heat.

Mike texted me pictures of their food all weekend, including pix from Uncle Julio's. I resisted the temptation to change the locks. They definitely ate well, and the cousins really hit it off.

Catch-up: Self-sabotage?

I can't predict the future, but I can pretty confidently anticipate that it will include some run-ins with people who do not appreciate quirkiness. Not all of the judgment we encounter is directed at Leah, either. Mike and I are on the business end of plenty of it. We aren't unique -- every autism parent I know learns to look over heads and ignore asides. Until we can't anymore.

To my surprise, my latest tipping point barely involved Leah. Maddie was the target.

The adventure began in a parking lot, with all three kids, on our way to an appointment. I was liberating Leah from the passenger side of my car (she cannot totally be trusted not pull the door handle while the car is moving, so I use the child safety lock) when I heard a voice from the other side of the car.

"Excuse me, ma'am, she hit my car."

'She' was an oblivious Maddie, who had opened her door into the car in the next space. The woman showed me a ding in the door that I had to squint to see, and a speck of red paint a couple of millimeters in diameter. She wanted my insurance information.

I get it. Some people care a lot about their cars. Mine is only a few months old and I have become the back-seat police, impressing on the kids that what goes in must come out. Despite my efforts to cling to the newness, the car already has a couple of mystery marks on the sides. Annoying, but in my view a fact of life.

Maybe I'm the one with a perspective that needs adjusting, because this woman behaved as though I had rear-ended her. And no, she wasn't driving a Ferrari. The car Maddie allegedly damaged was a Toyota, a minimum of 10 years old, with a decade's worth of wear and tear on the paint job and a rear bumper that was a different shade of gold than the rest of the car.

I don't clearly remember what I said to the woman. I was truly surprised that she wanted to exchange information. Complicating matters was the fact that in the time it took me to inspect the side of this woman's car, Leah had already disappeared into the office building. After pointing out to the woman that I needed to catch up with my daughter, who has autism, I handed her one of my insurance cards, gave her my phone numbers, and started after Leah. I figured if she was determined to use this incident as an excuse to get her door redone, there was little I could do about it. She gave me her card and a parting shot: "You really want to teach your children to be careful when they're opening car doors."

She is lucky I had said children with me. In the split second I had to consider my responses, I could not come up with anything I could say in front of them, so I forced myself to keep walking. Mike pointed out that I should have encouraged her to call the cops, and let them try to keep a straight face while she made an accident report. 

The Dragon Lady called me the next afternoon, at about the time I'd managed to forget about her. She told me she was willing to forego pursuing an insurance claim if Maddie wrote her an apology letter, an offer she clearly expected me to be grateful to receive. In her opinion, Maddie did not appear adequately remorseful what she'd done, and writing a letter would deliver the message that she should be. The Dragon Lady believed she'd seen Maddie laughing. I pointed out that it was very likely that anything Maddie was laughing at probably had nothing to do with the Dragon Lady or her car, but this woman wasn't having any of it. As far as she was concerned, Maddie needed to learn her lesson. Or rather, Maddie's mother did. I took down her business address and got off the phone as quickly as I could.

Maddie is guilty of being eight years old. I don't remember whether she laughed or not, but I clearly remember that I had to explain to her what all the fuss was about once we caught up with Leah. I also had to reassure her that she was not a bad person. I have never seen Maddie inflict property damage and then find it hilarious.

(By the way, according to the Dragon Lady's business card, she is a marriage and family therapist.)

My irritation did not fade over the next couple of days. I could have tolerated one sanctimonious lecture and let it go, but the Dragon Lady gave me two, apparently as part of a quest against bratty kids and their lousy parents. Except that's not who Maddie is. Mike and I put time and effort into not allowing our kids to become inconsiderate brats. And I may be a crappy parent sometimes, but not for the reasons this woman thinks. We try not to let Lauren and Maddie's lives be ruled by autism, but sometimes we fail, and that feels pretty lousy. There are times we put Leah on auto-pilot, letting her retreat into her own world, so that we can have time for the twins, ourselves, or even the house on occasion. That's pretty guilt-inducing too. And the times that Leah's behavior escalates, and we don't get between her and her sisters fast enough? That's the worst of all.

I decided to have Maddie write the letter, but I had her keep it simple. I was not going to feed the Dragon Lady's overblown sense of self-importance with pleading or flowery language. I also decided I could not let her have the last word. I can swallow a lot of crap (and have) in the interest of keeping things on an even keel, but the Dragon Lady exhausted my limit. So here is what I enclosed with Maddie's note:

As requested, a letter from my daughter is enclosed. I appreciate your concern that she might not have fully absorbed the gravity of her mistake, and thought I would share with you a few of the things she has learned, both before and after her run-in with your car door.
We apologize for mistakes, regardless of the issue or the recipient. She has seen and heard enough apologies from me, when my grocery cart blocks another or I accidentally bump into someone, to understand that. On that particular day, my oldest daughter, who has autism, had already made a beeline for our destination. I was feeling considerable tension between my desire to catch up with her, to slow her down and ensure her safety, and your wish to speak with me about your car. I honestly don’t remember whether, in the midst of all of that, I made an apology. If not, I am sorry that my car door bumped yours.
Perspectives differ. My car is a few months old, and as much as I love the brand-new look, my expectations are realistic. I already have a couple of mystery blemishes on it. Unfortunate, but not surprising, since I use parking lots. You chose to be aggravated by one more mark on the side of your car. Maddie’s perspective was that of an eight-year-old who until recently rode in a car with sliding doors. She was bewildered by all the angst in the parking lot until I explained door dings to her later. Whatever she laughed at had nothing to do with cars. It wasn’t about you.
We treat others with compassion. Maddie is a natural at this, as a sibling to an older sister with autism. She’s a popular play date because she’s polite to adults and kind to other children, including younger siblings. She has met enough children with disabilities that she is rarely judgmental. She didn’t argue with me about the apology, but she did struggle with the idea that a stranger would jump to conclusions about any of us based on a brief encounter in a parking lot. 
If I were to jump to conclusions of my own, I might speculate that it is easier to pigeonhole Maddie as a bratty kid who needs to be taught a lesson, or me as a negligent parent, than to acknowledge that your response was heavy-handed. I might also wonder whether your clients respond well to lectures, or the tone used to deliver them. Instead, I’ll choose a kinder thought, that your demeanor may have been affected by stress, just as our responses to you were influenced by other factors. 

I knew I would hear from her. Fortunately, when she called, I didn't hear my cell phone. I made Mike listen to the message later, in the interest of preserving my blood pressure. The upshot was: Explanations about why she drives that car. (Who cares?) Potshots about us making excuses. (No surprise there.) And she took exception to my references to her profession, telling me that she is allowed to be human when she is not at work. (Apparently she is only compassionate or understanding when someone pays her.)

I've been back to that building a few times, and foregone the opportunity to park next to her car.   

Yesterday's gem

Maddie: "Leah, do you love me?"

Leah: "No."

Maddie found this hilarious. Clearly we have some work to do ...

Father's Day tribute, part 2

In honor of Father's Day (and the fact that a purse cleanout turned up a missing flash drive), I'm uploading the slideshow we played at Dad's memorial service. Not fretting this week about what to give him (and paying extra for fast shipping when inspiration finally hit) felt utterly wrong. All the good memories bring a lot of gratitude, though.

Father's Day tribute

Happy Father's Day to an awesome dad from his wife and three quirky children.

Siblings

Fashionista

I was sitting on the end of Maddie's bed, trying to dole out maternal comfort for a stomachache, when Leah walked in, eyed my sleep pants and t-shirt, and said, "Mommy, your pajamas don't match."

The fact that the critic herself was wearing red Hello Kitty underwear on her head at the time she delivered her critique might have slightly detracted from the weight of her words.

Remembering

With wall-to-wall royal wedding coverage everywhere, today has been a day of homesickness for England and (by extension) for my father. My parents should have been in England today, the second half of a trip that would have began with a visit to Stuttgart to see Julie, Colin, and Nicholas.

My whole family has been galvanized by the amount of support we have received in the last two weeks. Extended family and special friends from a number of places came to Sarasota to help us celebrate my father, and many more sent cards and letters. Since Dad was not a member of any organized religion, we relied on the words of family and friends to celebrate his life. Ten people spoke, and while I can't reproduce what everyone said, Mike, Heather, and I all put our words in writing, in case emotions got the better of us.

For me, oldest daughter equaled first in the lineup:

My whole family is grateful to all of you for helping us celebrate my father's life.

A celebration of life -- we arrived at that title for today after realizing it's a tall order to plan a service for someone who detested funerals. I think given his choice, he might have told us to have this at the Nags Head in Sunningdale, where they knew him by name and welcomed him back no matter how many years it had been between visits. A few pints, some racing on the telly, call it quits. Logistically not quite feasible, so here we are. He did love a good gathering -- whatever the occasion, he liked to make memories.

In thinking about how to have a gathering that did not seem like a funeral, I also couldn't help thinking about why he didn't like funerals. I think it's a pretty simple answer. He was not someone who dwelled on the past. Sniveling was not on. In my memories of him, I hear him saying things like Go for it! or Get after it! If we were at the racetrack and the horse was making the final turn, it was Go on my son! Even when he coached my soccer teams when I was a kid, it was Chase it, chase it! or You've got to go forward!

You've got to go forward. He succeeded in getting nine-year-olds to do that on a soccer field. It's definitely how he lived his life. He knew where things should be headed, what was right to him in any given moment, and that was the direction he went.

If you've ever been to a restaurant with him you've probably seen an example or two of that unwavering certainty. He was known to coach food service employees on anything from deboning a fish to properly garnishing an entree, which of course never, ever involved placing a tomato anywhere on the plate.

A life spent going forward is rarely dull, and certainly my father's capacity for creating memories impacted my life in more ways than I can count. Earlier this week I reminisced with a high school friend about the backyard Guy Fawkes fireworks parties we had at Gable House. One or two teenage boys were usually conscripted to help out. The marching orders were pretty straightforward: Light it and run like hell. Fortunately his assistants came out of it with all of their fingers, largely unscathed, although the same could not always be said of the yard. The year he blew up the bush, I had one or two people verify with me that it was unplanned. It's a fair question. It would not have been out of the realm of possibility for him to decide to change the landscaping and also to decide that using a shovel was boring.

Not that the landscaping at Gable House needed much help. I found all the stereotypes about Brits and their gardens to be true, especially at Gable House. Our flower garden did have a unique feature at certain times of the year -- oversized onions protected by wire rabbit-proof fencing. The Nags Head Pub onion-growing contest was serious business every year.

Some of my college friends still refer to him as The Legendary Alan Cocks. If we brought you around Dad, you were fair game. I introduced him to a fairly well-known, fairly shaggy-haired sports writer at our wedding and he remarked that it was a shame the Dallas Morning News didn't pay enough for a haircut. There are an elite few who can get away with that kind of thing, and then there are the rest of us. He could always pull it off. When he took the Mickey out of someone, they went back for more.

My sisters and I are boundlessly grateful for the ways our lives have been easier and better and richer because of the opportunities he gave us. If I had never learned to read a racing form or place a bet on a horse, my relationship with my husband might not have been the same. I married a man with a healthy appreciation for the Sport of Kings, the halls of sin in Las Vegas, Australian lager, and the wisdom of Monty Python and Blackadder. Does that sound familiar?

In the last decade of his life, he took on another hobby -- his grandchildren. I thought my dad might decide to be called Granddad, since that was what we'd called his father, but he had other ideas. When we got around to asking him what name he wanted, he said he wanted to be Grump. The fact that my mother was slightly appalled when he said it was all the endorsement he needed. And really it took my mother about 30 seconds to realize all the ways that title might be appropriate.

And he was a very good Grump to his grandchildren. Lauren particularly enjoyed sitting on his lap reading books. He and Maddie had an ongoing contest about who was the super champion. A couple of Christmases ago Maddie got a Teddy bear, which she decided to name Anthony after her best friend in kindergarten. If we'd been spending Christmas with my mother-in-law, that name would have stuck. However, my father thought a more appropriate name for the bear would be Super Grump. A days-long debate ensued. Guess who ultimately won.

When I talk about the kind of grandparent he was to Leah, it gets hard for me to stick to the no-sniveling rule. My parents' devotion and enthusiasm never wavered, even in the face of autism. More often than I'd like, I meet parents whose families don't cope well with autism. I'm blessed to say that has not been true for us. In the first few years after Leah's diagnosis, she was not terribly welcoming to anyone other than Mike and me. On visits, greetings were often returned with 'bye Grammie, bye Grump' or 'no.' To their credit, both my parents instinctively understood what she was saying was less about go away than it was about try harder. The payoff came within a few years, when the dismissals gave way to genuine pleasure in seeing them. Grump in particular had a knack of picking up on her obsession of the moment -- usually a character or a scene from a television show -- and turning it in to an inside joke between them. There was also some friendly competition for the remote control -- Fox News vs. Phineas and Ferb. During every visit she would find him in his favorite chair and drape herself in his lap. She's ten now, so she's kind of a lapful, so to speak, but it didn't seem to bother him. I feel his loss for her, because she would not have outgrown that banter anytime soon, if ever.

He was one of the first to teach her about the rewards of developing a relationship with another person. It was a quirky one, but it worked for both of them. He helped her learn a skill that she can take with her, going forward. That's what he wants from all of us. We've got to go forward. Thank you Dad, and Super Grump, for showing us how to do that with style.

From Mike, who reminded me that he was a good writer, before he became one of the gods of newsroom computer systems:

Alison and I had been married a couple of years when she brought me along for my first trip to England. Alan and Kathie were there at the same time, so we met them in London for an exquisite dinner of Dover sole, new potatoes ... and not even the possibility of a tomato. Afterward, we went outside to a perfect summer night and stopped at a pub with outdoor tables for "a" drink.

A few minutes later, Alan spotted a betting shop across the street. There was still daylight in Scotland and I was given a three-word directive: Come on, lad.

We were just in time for the impossibly prestigious 9:20 from Musselburgh.

Alan scanned the list of starters and lit up when he saw Hasta La Vista Baby. He tried to convince me he knew the horse's history and had seen him run many times, but I'm pretty sure the name was the attraction.

From his pocket came a fistful of cash, bet on Hasta La Vista Baby to win at odds of 7/5 -- which may have in fact been the longest shot that Alan ever backed. The man did love his chalk.

The race went off and Hasta La Vista Baby -- and his jockey, of course -- received the usual full-throated encouragement all the way around. The race tightened up and at the wire ... Hasta La Vista Baby was in a four-horse photo finish. It didn't look like the photo was going to go Hasta La Vista Baby's way, but there was a jockey's objection. Then another.

The race replays looked like something out of the Wild West, so Alan and I realized it might take a while to sort this out. We took turns running back to the pub -- supposedly to keep the wives updated but really it was to down a quick pint. And they knew that.

After 45 minutes finally -- I shouldn't even have to tell you this -- Hasta La Vista Baby was declared the winner. And 2 1/2 handfuls of cash went back into Alan's pocket.

That's my favorite story about Alan, but I have so many to choose from after 18 years in the family -- the toast he gave at our rehearsal dinner; the time we both wore golf shoes into the apparently hallowed dining room at the Dunbar links but only I got kicked out; the time Alison, Julie and I were in the hot tub at the Keith Pointe house and he periodically lobbed big cans of Fosters into the pool from about 50 feet away.

It is one testament to the man that we each have a database of Alan adventures. Recounting all of them would take weeks. But we also know he was the exact opposite of frivolous -- and was fiercely loyal to his family and friends. And -- I'm pretty biased about this -- there's no better example of that than somebody who isn't in this room.

Our daughter Leah -- Alan and Kathie's first grandchild -- was diagnosed with autism at age 3. As Alison said, it would have been easy for somebody from his generation -- from any generation, really -- to say he doesn't understand autism and give up. But our cause became Alan and Kathie's cause.

They helped us set up a home therapy program and other efforts that have helped immensely. They visited often, helping in any way they could and giving Alison and me much-needed breaks from having to deal with this and our young twins, Lauren and Maddie -- who brought us boundless joy but did make our hands that much more full.

But there was a lot more to it than that. Leah tries to shut out everybody -- particularly men -- outside the immediate family. But her Grump was always the exception. They had a bond that endured all the way until our last visit at Christmas, as you saw in that memorable picture at the end of the slideshow.

He always called her Trouble and she always played the part. Alan would act annoyed with her, Leah would run away cackling then return a few minutes later for another round. Inevitably, the poking finger or the tickling finger showed up, and when she was still small enough to pick up, it ended with a cow-a-bunga! onto the couch.

Alan never judged her. He never pitied her. He just loved her. And he understood her. Of course he was the same way with his other five grandchildren, who are all fantastically weird and funny in their own ways.

Leah is back at the house because a setting like this isn't right for her. She HAS made significant strides and Alan and Kathie deserve a lot of credit for that. We don't know what the future holds for Leah -- how can you know with any 10-year-old? We do feel like it's brighter than it would have been otherwise. Alison and I are going to do our best to make her Alan's greatest legacy.

From Heather, who reminds us why her writings are followed by a large number of people:

We mentioned the Sport of Kings in my dad’s obituary. The first time I went horseracing with my dad, I was about to turn six. It was fantastic. If you’ve ever been with my dad, you know there’s nothing like the sound of him roaring “GO ON MY SON” at the horses. Late in the day, he agreed to put two pounds on the horse of my choice. I picked Gold and Ivory, because it had such a pretty name, even though at 33-1 it was, shall we say, not the favorite. You can guess what happened: Dad figured out somewhere around the "GO ON" that his son was not going to win, and mine might be worth adopting. You can guess the rest: Gold and Ivory won, I got a crisp five-pound note for my victory, and I will never forget the look on his face when I blinked at it and asked him, “But where are the rest of my winnings?” (You know the one -- single eyebrow arched, deep skepticism, both disapproving and amused.) I think he couldn’t decide if he’d found a kindred spirit, or was in for a world of trouble. Probably both.

I loved those years with dad in England, going to the pub every weekend with him, betting on some ponies. He knew I was enthralled with what I called the “fruit machine” in the corner. Never one to miss an opportunity, Dad gave me a couple pounds to put in the slot, then turned it into a weekly enterprise, which my father classified as “valuable lessons in financial management” and explained how using my winnings to buy a few pints for the bar was, in fact, a sensible dividend reinvestment plan.

But that was Dad. He always had the most fun and the most creative take on everything. When I was little, he’d never serve leftovers – instead, he’d use them to invent some wild concoction and give it a crazy name so that it seemed really cool, like the GrooRaiChegMuff -- I think that had raisins, and an English muffin, and only he knows what else -- or the Filly Filly Filly Tummy, which I THINK had meat in it…? But it was delicious, as was everything he made. And then there was the time he bid on a deep fat-fryer at a silent auction without telling my mother, and decided that maybe calling it a "German wok" would make it sound more palatable.

Sometimes I try to think of how I will describe my father to my sons, who only knew him a short time. There are almost too many words. He was brilliant. He did the Times Cryptic Crosswords every day and he was a genius at wordplay. He was irreverent, as witnessed by the time the balcony of his Miami office flooded and was never repaired, so to make a point he blew up a plastic pool toy that he named Placido Flamingo and floated it on the water. Judging by the two giant screwdriver-sized holes he found in Placido’s deflated neck one day, I’d guess his point was made.

Dad was desperately allergic to tomatoes. And Dad was particular. How many men would answer honestly when celebrity chef Wolfgang Punk asks if you’re enjoying your dinner? Based on diners’ reactions, as Wolfie whisked Dad’s plate back to the kitchen like his pants were on fire, this may never have happened before, ever. Dad was gracious, such as when he told Wolfie the new wienerschnitzel was perfect. Dad was spiritual, or at least, that’s what he called it when he rallied the lads around the craps table in Vegas – it was dispensing spiritual leadership. He was stubborn. When we moved from Miami to Canada, everyone told him he'd have to sell that Mustang convertible, until Dad finally said, "Oh, REALLY," and drove that thing through every Calgary winter -- including a few that had him doing 360-degree spins down our icy street.

Dad was a master strategist. For instance, the year we won the championship Onion Contest at our pub, it was because Dad personally and painstakingly mapped out a plan wherein our gardener did everything. Dad was generous, like when he let a friend of mine in need live with us for a year. Dad was an artist. Who could forget all those holiday fireworks displays he designed? They were unforgettable to his friends and family, as we watched them light up the night sky over our lawn; unforgettable to a few of our more ornery neighbors, for whom he included a few fireworks that did nothing but make irritatingly loud booming sounds; and unforgettable to the teen sons of our friends who volunteered to help, and were standing next to Dad when he blew a huge hole in our backyard the size of about eighty championship onions.

He was a softy, a sucker for his grandchildren, for whom he watched an uncountable number of really awful kids’ shows just because they wanted to cuddle with him. And he was a romantic, such as when he took Julie’s Georgetown pals to a long dinner that ended in him convincing a tispy Joey to propose to his lovely girlfriend. Joey did, he remembered it in the morning, and to this day they still toast Dad on their anniversary. An anniversary they now sadly share with the date of his passing.

And he was, above all, an incredible father, who gave us the best life and the best opportunities. Dad wasn’t always the tallest person in the room, but to me, he was the biggest. Everyone gravitated to him. At dinner parties I always wanted to sit next to him, because 1) I knew he’d say about a hundred classic lines, 2) I’d get to watch people laugh at his lines and know that I had the world’s coolest dad, and 3) I might get to make him laugh – that loud, from-the-gut laugh where he threw back his head and gave in to it completely -- and that was the best. To me making Dad laugh was kinda like Einstein saying I was halfway decent at math.

But it wasn’t just me that loved him. As I look around at everyone, I realize how many people Dad affected. The outpouring from friends, and friends of friends, and their relatives, has been unreal. This photo to my left is from my wedding, and people who’d never even met him before that night have written to tell me that they remember him as if they’d known him forever, and how brilliant he was. He truly was larger than life, and that’s how I will always remember him. Dad may have been an only child by birth, but he leaves behind a family of his own making that I think was bigger than even he knew.

His obituary can be found at the Sarasota Herald-Tribune and Talk About Curing Autism (TACA).

The value of a rough draft

One of Leah's weekly homework assignments is using her spelling words in sentences. Occasionally that can yield some interesting results.

'Crowd' was on the list this week. Tonight's first attempt was: "There's a big crowd in my bedroom."

We convinced her to change the venue from her bedroom to the mall.

It's the thought that counts, again

One never knows when Leah might try to practice her compliment skills. Last night, on the way home from her occupational therapy appointment, she was feeling expansive: "I like your steering wheel, Mommy."

Why bingo daubers belong in Fort Knox

We go to one or two basket bingo fundraisers every year and therefore have a small collection of daubers that gather dust on the top shelf of a cabinet. About two months ago, we realized tighter security measures were necessary, when I walked into the kitchen and saw this:

Leah said, "I have bingo eyes, Mommy."

And I have a nice strongbox with a combination lock.

Out of the mouths of Hamiltons, Part MCDLXVIII

Leah (on noticing that Mike was leaving the house early this morning): Are you going to work, Daddy?

Mike: No, I'm going to the doctor.

Leah: Dr. Phil?

The saga of the pink dress

We have learned (the hard way) that Maddie can be more than a trifle touchy on occasion. Introducing new ideas to her at bedtime, for example, is not a good plan. One night a seemingly innocuous insect-related question and a quick lookup on Wikipedia (thanks, iPhone) led to a week-long phobia about bedbugs. Another time, she decided she couldn't sleep because the paper flower mobile Lauren had made from a kit and hung from the ceiling made her "feel weird." Reason is out. Closing the door and wondering how long before Lauren demands her own room is our only strategy.

Thus when the opportunity arises to give Maddie's chain a good yank, it's awfully hard to pass it up. Last November, I turned on speakerphone during a phone call with my mother, and about ten minutes of hilarity ensued while Maddie listened to us discuss the frilly pink flowered dress we were sure Maddie would love to discover under the tree on Christmas morning. By the time the we had moved on to matching accessories (lacy socks and bows for her hair), Maddie was nearly apoplectic, and Mom and I were having a ball.

(Readers of this blog may recall that Maddie was seen in a dress exactly twice in 2010 -- once when we made her dress for the occasion at her cousin's baptism, and once when a class field trip permission slip expressly requested that the second graders dress up for a trip to the symphony. Both times she indicated she was wearing a skirt under protest.)

Because the Hamiltons never let a good joke go by without beating it to death, we spent the rest of the run-up to the holiday season periodically assuring Maddie that Santa Claus knew all about her hankering for pink frills. At some point during all the hilarity, Lauren decided she actually wanted to give Maddie a pink dress. That was how we ended up at Goodwill on Christmas Eve.

Lauren looked at a few options that were about the right size, which we photographed because of course we wanted to be able to show Maddie what she could have received:

Lauren settled on this one, because its flowers were the biggest:

In order to avoid making the Touchy One feel victimized as the only recipient of a joke gift, Mike was dispatched with her to Target. A key part of that mission was for Maddie to come back with chocolate of some kind to give Lauren (which she likes about as much as Maddie likes pink frilly dresses). Initially Maddie had to be talked into it. It's never been her mission to make things too easy for us. But by the time Lauren and Maddie had wrapped up their joke gifts, it was clear they were jonesing for some Christmas morning hilarity.

Naturally, Maddie refused to entertain the idea of actually wearing it. So we had Lauren put it on, along with the hat we found to go with it, with the intention of substituting Maddie's head via Photoshop.

But with one thing and another, we never got around to that bit of photo-terror.

Then the invitation arrived for the area Brownie troops to participate in a father-daughter dance. Although the dance was a cute idea, and all the kids were excited, the flyer made the slightly ridiculous suggestion that all the girls should wear pink and the dads should wear grey (fortunately, some of the moms I talked to from our troop agreed with my more realistic assessment that the kids would wear whatever happened to be hanging in their closets that fit them). Maddie, who is excellent at following directions as long as they do not come from Mike or me, immediately said, "Guess I'll have to wear the pink dress I got for Christmas."

I offered her other options, with fewer flowers and in less girly colors, but she was steadfast in her decision to wear her Christmas present.

Of course, that did not stop her from being Maddie. Shortly before she posed for this photo, she announced ominously, "I REGRET this dress."

She did not let her attire get in the way of her good time, at the dance, or at her post-dance visits to Pizza Hut and Baskin-Robbins.

Nonetheless, when she got home, she was quick to change into her pajamas, dump the dress in her hamper, and announce, "I declare this dress RETIRED." Amen.

We take what we can get, and like it

"I like your lips, Mommy."

-- Leah, paying me an unconventional compliment. Works for me.

Out of the mouth of Maddie

"My mouth feels like a desert island."

-- Maddie, walking into our room this morning to request a drink, STAT.