Sunday, December 29, 2013
Travel adventures
When the holidays rolled around, I discovered Mixbook, a great site that allowed my sisters and me to collaborate on photo books. As much as I love digital photos, and the convenience of pulling out my phone to show off important pictures, I still love making and looking at photo books. Part of me still loves holding a finished product in my hand.
Here is the book I designed for Lauren and Maddie:
The year in pictures
Saturday, August 24, 2013
Not in my backyard
Thursday, April 11, 2013
Deep gratitude
- 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.
Tuesday, April 2, 2013
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.
Saturday, December 29, 2012
Holiday greetings 2012!
All the best,
Tuesday, October 30, 2012
Live Blog, Part the Third
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.
Monday, October 29, 2012
Live Blog, Part Deux
Hurricane Sandy live blog
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:
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Last look today at Patio Lake. |
4:40 pm:
So you're saying it isn't over? |
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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
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:
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Provisions check. Looking grim. |
1:55 pm:
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Hardware out, Maddie has her first popcorn in more than a year. |
1:25 pm:
11:45 am:
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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). |
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:
(Runs inside and hides under bed)
9:20 am:
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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:
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Um ... I need to go NOW. This is the routine, right? |
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So far, not much wind but a fair amount of rain. |
Friday, March 30, 2012
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.
Wednesday, December 21, 2011
Catch-up: Halloween highlights
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One very girly bunny. |
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One not-girly dragon ninja. (Can you say, 'fraternal twins'?) |
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One Mimi, delighted to have a turn with the bunny ears. |
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Hello Kitty returned for another year. |
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Leah was all business when it came to trick-or-treating. |
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Mike was especially excited to donate one of his new steak knives to our pumpkin display. |
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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.) |
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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. |
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The full bloody display. |
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After their buckets got heavy and their legs got tired, the twins decided it was time to help give some candy away. |
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Mimi looks beat, but her granddaughters are still functioning thanks to a combination of adrenaline and sugar. |
Tuesday, August 9, 2011
Catch-up: Self-sabotage?
To my surprise, my latest tipping point barely involved Leah. Maddie was the target.
(By the way, according to the Dragon Lady's business card, she is a marriage and family therapist.)
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.
Friday, January 28, 2011
Holiday letter 2010: A Year Too Real
Our annual Christmas greeting probably arrived after December 25 to most of the houses on our list. We decided that if it leaves the house before Christmas, it isn't late. And since I just found the pile that we planned to hand-deliver to our immediate neighbors (because it seemed lame to stamp and mail something to people who live across the street), I guess tardiness is not our only problem. Perhaps we'll be a leaner operation in 2011.
2010 has not been cheap. We’ve extracted snow-damaged trees, teeth and a dying heat pump -- and thus the biggest extractions of all have been from our bank account. The time came to consider extra sources of income. Thus, we plan to sell offer ourselves to the Bravo network as a Real Housewives franchise. Fortunately, we already have many of the elements of a successful Housewives installment:
- Stunning exterior shots: Pix submitted from January 2010 should astound, along the lines of, “I had no idea that much snow could fall in DC.”
- Midlife crisis: With a milestone birthday on the summer horizon, the lead Housewife engages in some ‘life’s too short’ decision-making: Leaving initially promising job that devolved into Dilbert cartoon. Instead of adding 'updating resume' and 'fielding complaints about supervisor' to required minute-by-minute timetracker, Housewife opts for less controversial terminology and calls them 'treatment planning' instead.
- Background spouse: The husband appears sporadically because he's working insane hours on a year-long project (and proposing his own Bravo spin off, tentatively titled Pimp My Computer, Million-Dollar Upgrade, or Mike’s Workstation Takeover).
- Dramatic phone conversations: Housewives love to advance the plot while gripping an iPhone. One call from the oldest Housewife-in-training’s school went like this: “She was having a rough morning, and then she pulled out two of her teeth, and she’s been doing much better since then.” Housewives offspring are often filmed as they attempt to find direction; future seasons could portray Leah learning to extract her own wisdom teeth.
- Road trip: Housewife and family take the show on the road to Duck, NC, to commune with sister-Housewives of LA, Stuttgart, and Sarasota. Possible crossover with Top Chef: Dabbling in Donuts.
- Facial-enhancing surgery: Numbing the jawline for a root canal immobilizes the facial muscles at least as well as Botox and is covered by dental insurance. Members of the greater Crofton community clearly find the resulting smile compelling, as they can’t turn their eyes away from its lopsided charm.
- Bling: The sparkly green and purple, handpicked by Housewife-in-training Lauren to adorn the hardware on the roof of her mouth, cost more than the lead Housewife’s engagement ring.
- Drugs: Housewife-in-training Lauren mellow during dental sedation, Leah whacked out on anesthesia.
- Frequent flashing of credit cards. Three trees removed, one a/c unit replaced, four root canals, a couple of new crowns, a few fillings, two extraction procedures, and a mouthful of hardware -- plenty of opportunities to act like we’re rolling in dough.
- Comic relief: Dentist finds it hilarious when lead Housewife suggests he offer a ‘buy two, get one free’ root canal special.
- Product placement: Leah finds motivation through repeated trips to Five Guys.
- Fast cars and fast women: Road to lead Housewife’s new job is apparently equipped with speed cameras. More uses for credit card.
- Tenuous grip on reality: Housewife-in-training Maddie wants a laptop for Christmas.
And, no matter how lackluster the ratings, our fans know we'll be back for another season.
Best wishes for a happier, cheaper 2011!
Mike, Alison, Leah, Lauren and Maddie Hamilton
Feliz Navidad
Sunday, January 2, 2011
Back in time, part 3: Halloween
