Showing posts with label Leah. Show all posts
Showing posts with label Leah. Show all posts

Sunday, May 5, 2013

The finish line, finally

Finding Leah's next school felt a lot like a college search. (The closest we'll ever come to one with this child.) A welcome, if time-consuming, after-effect of Leah's victory in IEP Round 4 was the amount of time we spent fact-finding, and then waiting for gut instinct to take over as we evaluated which place has the best chance of preparing her for the rest of her life.

Up for discussion were three school programs that will likely keep Leah until she's 21. After that, school won't be the center of her life anymore, and her days will need to be filled with something else. We hope a job will be part of that equation, as well as other activities that will make her happy. Overall,  not terribly different from our aspirations for Lauren and Maddie. Certainly this decision felt every bit as significant as the choices we'll help them make as they finish high school.

I've been out of college longer than I care to admit, but I'm not too old to remember what it was like to check out college campuses. I found a few similarities:

Tours. All three schools we visited were happy to show off their facilities. At my alma mater, Notre Dame, the tour highlights included the golden dome, the football stadium, and Touchdown Jesus. I checked out dorm rooms and the student center. For Leah, the classroom highlights were iPads and SmartBoards, and she happily sampled OT gyms and calming areas. The bubble column at Kennedy Krieger was a favorite.

Interviews. Admissions teams want to know all about student strengths and weaknesses. Prospective college students are all about self-promotion. Parents of prospective nonpublic students are all about the weaknesses. It's how we arrive at the application process. Your kid draws bubble guppies all over every other language arts assignment? Tosses Crocs? Flips chairs? Make sure all of it is on the record. While Behavior Intervention Plans (BIPs) are the sole province of the special education school, Notre Dame's Office of Student Affairs probably would have liked one for every student in the school, with provisions like limiting access to beer and the opposite sex.

Life skills. On college campuses, you can usually find professors who seem ill-equipped to function outside the classroom. At least Leah will get some life skills instruction during the week to go along with her academics. Truth be told, Leah is already better with laundry than I was in college. I used to put it off until I'd been through every last pair of underwear. Leah likes to launder every Sunday. (During my years at Notre Dame, the women's dorms came with washing machines. The men's dirty clothes went to St. Michael's Laundry, until it burned down in my junior year. Ha.)

Tuition. Next year, Notre Dame will cost about $57,000 in tuition, room, and board. Nonpublic tuition around here averages more than $65,000. Unbelievably, I found a way to make Notre Dame look like a bargain. The other major difference is that Anne Arundel County Public Schools will be receiving the tuition bills.

The best news is that we found a school we're truly excited about. Leah will start at St. Elizabeth School in Baltimore on May 13. I have no idea what I'm going to do with all the extra mental energy, in the absence of fretting about school. We're definitely ready to return to one IEP meeting per year for awhile.

Onward and upward, we hope.

Saturday, April 13, 2013

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.

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.

 

Monday, April 23, 2012

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."

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.

 

 

Tuesday, July 26, 2011

Yesterday's gem

Maddie: "Leah, do you love me?"

Leah: "No."

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

Monday, June 6, 2011

Saturday, May 28, 2011

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.

Wednesday, April 27, 2011

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.

Thursday, April 7, 2011

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."

Saturday, April 2, 2011

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.

Wednesday, March 30, 2011

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?

Sunday, March 20, 2011

We take what we can get, and like it

"I like your lips, Mommy."
-- Leah, paying me an unconventional compliment. Works for me.

Saturday, November 27, 2010

Compliments of the season

This is for all of you who remember Leah's past obsession with a certain holiday tune. I created this card at great risk to myself, since Leah's beginning to develop a new obsession with watching herself on the video. Happy holidays, and let's hope we're not in for Feliz Navidad: The Sequel.

Personalize funny videos and birthday eCards at JibJab!

Wednesday, September 22, 2010

Her platform: A remote control in the hand of every child

"I'm Miss Hawaii."

That's how Leah greeted me one evening last week, wearing the following ensemble:

Apparently pageant rules require all Miss Hawaii contestants to be Texas Longhorns fans. And wear their mother's blue loafers.

Saturday, August 7, 2010

"Timing is Everything"

It's Leah's new favorite phrase.

If I give her a schedule for the day, she tells me, "Timing is everything."

If I tell her that we can't go to the pool now, but we can go in another hour, she responds, "Timing is everything." It's her mantra for the summer.

The other night, I was an unwilling -- OK, very angry -- referee between Lauren and Maddie, who were overtired and cranky as they put away some laundry. Before long, they were in a screaming match over the exact placement of the laundry basket, which they were supposed to be emptying. Having briefly imagined one or both was being maimed or killed, you can imagine my delight when I walked in their room and saw that the household was at a standstill because one of them wanted to move the laundry basket about six inches closer to the bedroom door. Or something like that. I refused to listen to tearful pleas about the latitude and longitude of the basket, placed it on a random spot, and told them rather forcefully that the basket was not moving from that spot. Maddie continued to voice her dissenting opinion (I think letting an argument go is simply not in that child's DNA), Lauren was in tears, and I was thinking how much cheaper it would have been to stop at one child. I gave them both the evil eye before letting them know, at full volume, "I. Don't. Care."

Apparently all the drama drew Leah to the scene, unnoticed until that moment. While the other two were either reeling from the evil eye or drawing breath for Round 12, Leah said, "I don't care either, Mommy."

She not only preaches it, she practices it: Timing is everything.

Thursday, July 1, 2010

Holland Schmolland

Flying under the radar is not always a Hamilton family forte. Particularly not when we arrive at the community pool only to be informed on no uncertain terms that Leah does not want to be there. At that point, we're left with a couple of unappealing choices: Public misbehavior by a 9-year-old who is acting like her shoe size, or rewarding bad behavior (as well as holding other family members hostage to it) by turning tail and leaving.

We've been doing this long enough to know that there are bigger problems than a few looks and the occasional comment, and one of those would be a child who believes she has something to gain by throwing a fit. For us this was a no-brainer: We stayed, and we put up with the shouting and the crying until Mike, with some well-timed roughhousing, was able to remind Leah why she loves to swim. A rocky start was transformed into a normal (for us) outing.

It made me think of a line from "Holland Schmolland," a wonderful essay about living with autism: " ... we ignore these looks and focus on the exit sign because we are a proud people." I have no doubt that some people at the pool could not understand why we kept her there. I can't worry about that. We'd make the same choice again.

If you haven't seen this before, it's worth the read. If you have, enjoy it again. It speaks to me every time I read it.

Holland Schmolland
by Laura Krueger Crawford

If you have a special needs child, which I do, and if you troll the Internet for information, which I have done, you will come across a certain inspirational analogy. It goes like this:

Imagine that you are planning a trip to Italy. You read all the latest travel books, you consult with friends about what to pack, and you develop an elaborate itinerary for your glorious trip. The day arrives.

You board the plane and settle in with your in-flight magazine, dreaming of trattorias, gondola rides, and gelato. However when the plane lands you discover, much to your surprise, you are not in Italy -- you are in Holland. You are greatly dismayed at this abrupt and unexpected change in plans.

You rant and rave to the travel agency, but it does no good. You are stuck. After awhile, you tire of fighting and begin to look at what Holland has to offer. You notice the beautiful tulips, the kindly people in the wooden shoes, the french fries with mayonnaise, and you think, "This isn't exactly what I had planned, but it's not so bad. It's just different."

Having a child with special needs is supposed to be like this -- not any worse than having a typical child -- just different.

When I read this my son was almost 3, completely non-verbal and was hitting me over 100 times a day. While I appreciated the intention of the story, I couldn't help but think, "Are they kidding? We're not in some peaceful country dotted with windmills. We are in a country under siege -- dodging bombs, boarding overloaded helicopters, bribing officials -- all the while thinking, "What happened to our beautiful life?"

That was five years ago.

My son is now 8 and though we have come to accept that he will always have autism, we no longer feel like citizens of a battle-torn nation. With the help of countless dedicated therapists and teachers, biological interventions, and an enormously supportive family, my son has become a fun-loving, affectionate boy with many endearing qualities and skills. In the process we've created . . . well . . . our own country, with its own unique traditions and customs.

It's not a war zone, but it's still not Holland. Let's call it Schmolland. In Schmolland, it's perfectly customary to lick walls, rub cold pieces of metal across your mouth and line up all your toys end-to-end. You can show affection by giving a "pointy chin." A "pointy chin" is when you act like you are going to hug someone and just when you are really close, you jam your chin into the other person's shoulder. For the person giving the "pointy chin" this feels really good, for the receiver, not so much -- but you get used to it.

For citizens of Schmolland, it is quite normal to repeat lines from videos to express emotion. If you are sad, you can look downcast and say, "Oh, Pongo." When mad or anxious, you might shout, "Snow can't stop me!" or "Duchess, kittens, come on!" Sometimes, "And now our feature presentation" says it all.

In Schmolland, there's not a lot to do, so our citizens find amusement wherever they can. Bouncing on the couch for hours, methodically pulling feathers out of down pillows, and laughing hysterically in bed at 4:00 a.m. are all traditional Schmutch pastimes.

The hard part of living in our country is dealing with people from other countries. We try to assimilate ourselves and mimic their customs, but we aren't always successful. It's perfectly understandable that an 8 year-old from Schmolland would steal a train from a toddler at the Thomas the Tank Engine Train Table at Barnes and Noble. But this is clearly not understandable or acceptable in other countries, and so we must drag our 8 year-old out of the store kicking and screaming, all the customers looking on with stark, pitying stares. But we ignore these looks and focus on the exit sign because we are a proud people.

Where we live it is not surprising when an 8 year-old boy reaches for the fleshy part of a woman's upper torso and says, "Do we touch boodoo?" We simply say, "No, we do not touch boodoo," and go on about our business. It's a bit more startling in other countries, however, and can cause all sorts of cross-cultural misunderstandings.

And, though most foreigners can get a drop of water on their pants and still carry on, this is intolerable to certain citizens in Schmolland, who insist that the pants must come off no matter where they are and regardless of whether another pair of pants is present.

Other families who have special needs children are familiar and comforting to us, yet are still separate entities. Together we make up a federation of countries, kind of like Scandinavia. Like a person from Denmark talking to a person from Norway (or in our case, someone from Schmenmark talking to someone from Schmorway), we share enough similarities in our language and customs to understand each other, but conversations inevitably highlight the diversity of our traditions. "My child eats paper. Yesterday he ate a whole video box." "My daughter only eats four foods, all of them white." "We finally had to lock up the VCR because my child was obsessed with the rewind button." "My son wants to blow on everyone."

There is one thing we all agree on. We are a growing population. Ten years ago, 1 in 10,000 children had autism. Today the rate is approximately 1 in 250 (sic). Something is dreadfully wrong. Though the causes of the increase are still being hotly debated, a number of parents and professionals believe genetic predisposition has collided with too many environmental insults -- toxins, chemicals, antibiotics, vaccines -- to create immunological chaos in the nervous system of developing children. One medical journalist speculated these children are the proverbial "canary in the coal mine", here to alert us to the growing dangers in our environment.

While this is certainly not a view shared by all in the autism community, it feels true to me.

I hope that researchers discover the magic bullet we all so desperately crave. And I will never stop investigating new treatments and therapies that might help my son. But more and more my priorities are shifting from what "could be" to "what is." I look around this country my family has created, with all its unique customs, and it feels like home. For us, any time spent "nation building" is time well spent.

Thursday, February 11, 2010

Time to start locking the doors

My post-snow shoveling shower was interrupted when Leah marched into the bathroom and announced, "You're still dirty, Mommy. Remember to wash behind your ears."

When does school start again?

Friday, January 1, 2010

She communicates quite effectively when she wants to

I think most of us begin our relationships with our iPhones resolving that our children will not be allowed to touch them, like, ever. In our house, that lasted until I was out in public somewhere and needed to quell a rising tide of impatience. Sound familiar? Unfortunately, that was about all that was needed for Leah to fall in love with my iPhone. Now I'm constantly watching for stealthy (and not-so-stealthy) attempts to steal it.

Sometimes, like the other day, she's more direct. She couldn't find it anywhere (I've learned to secure it in a pocket whenever possible), so she resorted to the direct approach.

Leah: Mommy, do you want to share your iPhone with me?

Me: No, not really.

Leah: Yes, really.

I can almost envision a scenario in which she gets her own %$*& iPhone just because I'm sick of calling mine all the time to figure out where she's left it. Almost. The inappropriate factor aside (she's not a Hilton or a Jolie-Pitt or a kid named after a fruit), she would undoubtedly figure out how to call our relatives in New Zealand, and guess who would be left holding the bill?

Saturday, December 19, 2009

For those who didn't see this one on Facebook

Leah may be the one we often refer to as Madam, but the real drama queen in the house most of the time is Maddie. We were leaving Leah's speech appointment on a recent Monday and Maddie, who is never shy about voicing displeasure, was fussing about a bruised kneecap and some kind of injustice she suffered at Lauren's hands. I was running out of ways to suggest to Maddie that she get over it without using four-letter words, when Leah said, "Somebody's got issues." Even Maddie had to stop whining and laugh.

That was worth a Facebook status update at the time, but since the parental units have suggested that the advent of FB has adversely affected the production of blog posts, I'm posting it here for them.