Monthly Archives: September 2012

A Very Blue Saturday Morning

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Well, today was the big day. After six months of preparation and fundraising, our whole family took part in the 2012 Walk Now for Autism Speaks in Jacksonville.

Actually, the “event” began last night, when I got my hair dyed—and my two oldest kids decided to join me. Lee Trevino—yes, that’s his real name—has been cutting my hair for years, and when I told him about my scheme, he immediately volunteered his time to do the actual dyeing. I was willing to come in during his work schedule and pay whatever he charged for such a job, but Lee wanted to donate his time instead. I couldn’t talk him out of it. He has met most of my kids over the years, heard me tell stories about them, and has himself watched them grow up. So on one level it makes sense. But still it was very generous of this talented young Christian man to make a contribution that only he could make.

First up was me, with the full-head treatment. Then came my daughter, who wanted a couple of streaks. Then it was my son’s turn, and he went for a Mohawk.

 

The next morning, Katie decided the other kids should get a chance to join in the fun. She had secretly bought some more spray-on dye and offered to color anyone’s hair who wanted it. Our two boys in the middle opted out, but the little, fun-loving ones, couldn’t wait. And, of course, Katie decided she’d give it a whirl.

So we got to the place for the walk—an outdoor retail/gathering place along the St. Johns River called The Landing. It was crawling with people from all over Northeast Florida, far more than the last one we attended in 2010. We were even joined by visitors from far, far away.

 

No, seriously. A group of Star Wars cosplayers was there in full gear. I spoke with one of the Storm Troopers, and he told me that the group gathers every other week for their own stuff, but they also like to attend charity events like this one to lift people’s spirits.

So anyway, after a bit of time hearing moving testimonies from a couple of people—parents of children with autism and the like—the emcee gave a countdown. And everyone began to walk. It was a one-mile round-trip walk along the river. Nothing too challenging, considering the number of children involved—and not a few wheelchairs. So we walked.

 

When we got back to The Landing, we were all cheered in by the emcee. It was a beautiful day—some clouds, around 84 degrees, with a nice breeze off the river. There was even a Kids Zone set up with a bounce house, animal balloons, and a Home Depot kid-builder spot. Best of all, the kids managed to keep it together (for the most part) the whole morning.

So that’s what happened—at least as far as the little ones were concerned. Katie and I knew something much more important was happening. Thousands of people gathered to celebrate the special people in their lives. They banded together to raise their voice on behalf of the millions of people who have an autism spectrum disorder. They raised nearly $70,000.00 to help raise awareness, fund research, and advocate for this unique and growing population. It was a very positive, almost jubilant, atmosphere as we all saw how many we were. I’ve said it before: dealing with ASDs can make people feel pretty much alone out there. So events like this walk are vital in showing us that we are far from alone!

So we did it. All of us. All of you. You helped me reach my goal, and for that I am exceedingly grateful. You told me that Katie and I have real friends all over the country. Friends who support us. Friends who pray for and with us. Friends who want to help us make a real difference. Thank you so much for your help!

Oh, I almost forgot. Here’s what I looked like all morning long:

Yep, you did that, too!

We Did It! (version 2.0)

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Well, as of this week, you all have officially pushed me over the top of my new goal. That’s right. I have now raised more than $2,000.00 for Autism Speaks. And you know what that means. I’ll be dyeing my whole head blue for the walk next Saturday. And I promise to post pictures, both of the dye job and the walk, as soon as I can. I can’t wait to see my kids’ reaction to the color!

Thank you so much to everyone who made a pledge for this walk! It’s such a good feeling knowing that we have so many friends who are “walking” with us in this way. And the same goes for those who did not donate but who have offered words of support and the promise of prayer. You all have a special place in our hearts.

So yes, I’ve reached my goal. But there’s still time to give if you’ve been putting it off. Every gift helps us get closer to understanding what’s behind this “epidemic” of autism spectrum disorders. Every gift gets us closer to helping every family that receives a new diagnosis. Every gift gets us closer to the day when all insurance companies offer coverage for ASD therapies.

So if you’ve been on the fence, now is your time. Don’t let my having met my goal stop you.

A Welcome Dose of Reality

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Here’s another installment of “Celebrities and ASD,” this time from the world of sports. It seems that former Red Sox pitcher Curt Schilling has a son with Asperger syndrome. He and his wife, Shonda (gotta love that name), wrote a 2010 book about their journey entitled The Best Kind of Different.

“Well, that’s special,” you might say. “Another Jenny McCarthy-like figure talking about how wonderful her child is and how her life has been transformed by this beautiful but different, otherworldly being entrusted to her care.” But you’d be wrong. At least from the Schillings’ interview on the Today show and a more extensive interview they gave to an online sports journalist named Maury Brown.

Here’s what I liked about the Schillings’ story. They’re willing to be real. Shonda (ooh, that name again) is very up-front about the seven years she spent not knowing that their son, Grant, was different. How she didn’t get his lack of responsiveness to her parenting. How she would yell and scream at this kid who seemed to disregard her every command. How she would get really angry at her on-the-road husband for not being around to help her with this “difficult child.”

And then there’s Curt’s admission that he really had a hard time relating to his son—and that he still has a lot of work to do on their relationship. The kid is so intense emotionally—both positive and negative—that he didn’t know what to do with him. He talks about trying to discipline Grant over the phone: shouting at him via long distance, threatening him with loss of privileges, trying to knock some sense into him verbally, all to no avail. Mind you, Schilling is known for speaking his mind pretty bluntly, and his unguarded comments in MLB circles have gotten him in trouble a few times. So it kind of fits that he would be just as direct with his children.

But oh, the reality that this couple brings to the conversation! I love that, because it isn’t easy, and parents are only human. Even after having learned that Grant is on the autism spectrum, they still have tough days—a very important insight. Knowing doesn’t change everything. It takes time and effort to change your expectations. It takes time, and trial and error, to learn how to roll with the punches. As Curt said, every day is like a jack-in-the-box. You don’t know what kind of kid is going to wake up each morning: Mr. Flame-Throwing Grumpy Gus or Lil’ SweetPea the Emotionally Needy Klingon. But they’re learning. They’re adjusting. They’re trying their best to figure the whole thing out and to do right by their son. And this a full three years after Grant’s diagnosis!

I can’t tell you how refreshing it was to see the video and read their interview. It’s so refreshing to know I’m not the only one who can lose it with my kids. Or that I’m not the only one who still doesn’t get them all the time—after all these years. Or that I’m not the only one who has to take a break every now and then lest I get wound so tightly that I snap. Or that I’m not the only one who forgets that all they’re doing is being themselves, being autistic in their own unique ways.

Because really, sometimes it just plain sucks. Every emotion is writ large. Every variation from routine is a potential explosion. Unless of course it’s the kid wanting to change the routine. Then it absolutely has to happen according to the newly announced plan. Every teacher needs a lesson in ASD. Every excursion, even to the flippin’ grocery store, is fraught with peril. Sometimes it just gets to be too much. And that’s why I’m so glad to know that folks like the Schillings are around: real people who don’t mind being honest about how hard it can be.

A Whole Blue World

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As many of you know, I reached my fundraising goal of $1,500.00 late last month. What a great feeling, both being able to raise so much and seeing the support that so many friends have given us. Every donation has been a moving testimony to Katie and me that we’re not alone in this journey.

But as inspiring as it has been to come this far, I believe we can go farther. I know there are still people out there who need just a little more encouragement—or a couple more reminders. There are still aunts and uncles, cousins and godparents, co-workers and neighbors, friends and even frenemies out there, just waiting for another invitation.

So here’s the new incentive. If I can get to the $2,000.00 level before the walk, I’ll dye my whole head blue. Yup—the entire cranium. All it takes is $500.00. That’s just $50.00 from 10 people. Or $100.00 from 5 people. Or $25.00 from 20 people. That’s not too hard to imagine, is it?

And if you do give, here’s how your donation will be put to work.

First, there’s Autism Speaks’ research program, which makes grants to pediatricians, geneticists, psychologists, neurologists, and other professionals delving into the causes and treatments of autism spectrum disorders. The program also includes the Autism Genetic Research Exchange (AGRE), which is building a comprehensive research database comprised of DNA, clinical, and medical information from families with two or more children on the autism spectrum. Needless to say, our family is a mother lode of information for them! We’ve been part of the AGRE project for the past three years, and it feels great knowing that we’re able to help.

There are also a number of online tool kits developed by Autism Speaks. The most popular is their 100 Day Kit, which was created for parents of newly-diagnosed children. Those first few months are often filled with anxiety and loads of questions, and this online tool offers expert guidance to help parents acclimate themselves to their new reality. Other tool kits give parents information concerning medication options, various behavioral treatments, and navigating challenging events like dental visits and potty training.

Next, there’s Autism Votes, the lobbying arm of Autism Speaks. The purpose of this group is to advocate for laws that will protect people on the spectrum. Some states still don’t require insurance companies to cover behavior therapy or speech and occupational therapies to people with an ASD diagnosis. Autism Votes is in these states, working to convince lawmakers that the upfront cost of these requirements is far less than the long-term costs of caring for people who never learned the skills they needed to help them function in the outside world. Autism Votes was also instrumental in getting the Combating Autism Reauthorization Act (CARA) through the House and Senate. This act secured nearly $700 million in federal dollars over three years for autism research, treatment, and services. It’s still not where it should be, but at least there’s movement.

See how much good you’ll be doing if you make a pledge? It’s not about making me dye my hair blue; it’s about helping to improve the lives of families touched by ASD. It’s about figuring out what causes this thing in the first place. It’s about making the world a more welcoming place for folks on the spectrum. So if you haven’t made a donation yet, go ahead. Push me over the $2,000.00 mark. You can help make a difference in so many lives. And if you’ve already donated, thank you so much. You’ve already made a huge difference!

We Did It!

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Cue the fireworks and strike up the band! As of this Wednesday, I reached my goal for the 2012 Jacksonville Walk for Autism Speaks. Or perhaps I should say that we reached our goal for the walk. Each and every one of you who donated helped get me closer to the $1500.00 mark—and closer to blue hair. Thank you all so very much!

I can’t tell you how moving it was each time I received notification that another one of you made a donation on our family’s behalf. When I began this thing back in March, I imagined I would see the numbers rack up over time with a dispassionate acknowledgement of my friends’ generosity.

Sure, I’d be grateful and all that. But I wasn’t expecting to be as affected as I turned out being. Each time another name was added to the list, I would think of that person and all that he or she has meant to me or Katie over the years. It would feel as if that person were right there with me, assuring me that we weren’t alone in this. And that has made a very big difference. Now, when I walk on September 29, I’ll be taking each of these people with me in my heart, thanking them for their concern and praying that God will shower them with his blessings.

A Few Moving Surprises.

Something else that surprised me was the great variety of people who donated. One pledge came in from a priest in Noblesville, Indiana whom I haven’t seen in decades. We knew each other when I was in College at Mount St. Mary’s and he was a seminarian there, but haven’t seen each other since our days at the Mount in the late 1970s and early 1980s. Another came from a co-worker at The Word Among Us whom I have met only once or twice, but who has never met Katie or my kids. Still, she wanted to help. And a third came from a cousin up in Pennsylvania whom I don’t think I’ve seen since I was in my twenties.

Of course, the people you would expect to give showed up—the family members and close friends who see you regularly. But to hear from people like those I mentioned above—that’s just amazing.

So now I’m off to get some blue dye and a puzzle-piece template. But I’m not done yet. There are still four weeks to go until the walk. There’s still time to give, if you’ve been putting it off. Don’t let the fact that I’ve reached my goal stop you. In fact, I’m thinking (not sure yet) of upping the ante and promising to dye my whole head blue if I get to $2,000.00. Now wouldn’t that be a hoot?

One Small Step.

It’s a great feeling to know I’ve reached my goal. But that’s just small potatoes. The medical and scientific community is still a long way off from reaching its goal. We still know so little about the causes of autism spectrum disorders. We still know so little about how to help those afflicted with ASD. And we surely have a verrrrry long way to go in raising awareness about this little-known but rapidly-growing disorder.

Too many kids are being bullied and written off in schools all around the country. Too many adults are unemployed or underemployed because people can’t see all they have to offer. Too many pediatricians don’t know ASD when it’s staring them right in the face. Too many parents are told there’s no hope . . . when there is tons of it.

So I reached my goal. So I’m going to walk. But that’s just one small step. The whole ASD community has a very long road to walk. I am so grateful to each of you who have made this one step possible. Still, I can’t help but keep appealing to everyone else to help us get a little bit farther. Just click on this link, and help us out. Thanks to all of you!