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| Last look today at Patio Lake. |
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| So you're saying it isn't over? |
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| Facetiming with a friend down the street about how bored they are. |
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| Provisions check. Looking grim. |
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| Hardware out, Maddie has her first popcorn in more than a year. |
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| The rain is picking up and our usual patio lake starts to form. |
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| On a conference call from my kitchen office (yay, unused outlets). |
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| Even better: Hurricane bacon and pancakes! |
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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. |
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.
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.
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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. |
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.
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