Category Archives: From the Home Front

Of Sore Thumbs and Personal Victories

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One of the benefits of living in a swing state during an election year is the high likelihood that one of the candidates or a spouse will show up at a rally pretty much right at your front door. That’s exactly what happened last weekend. Ann Romney, Michelle Obama, and Joe Biden were all within shouting distance of our humble town of Saint Johns, Florida.

Some may consider this a curse more than a blessing. But when I found out that Joe Biden was going to be in St. Augustine last Saturday, I was happy. This could be a great civics lesson for our oldest son. I even got his social studies teacher to approve extra credit if he went to the rally and wrote a report about it. So I headed to the local Obama headquarters to get tickets to the event, to be held at a school gym.

When we got there on Saturday morning, I knew we were in for a challenge. Due to heightened security, everyone had to be screened before they could enter—which meant we had to stand in a long line. As soon as he saw the crowd—and how slowly the line was moving—my boy’s face fell, and he began trying to get out of it.

“Please, let’s just go,” he said plaintively. “There are too many people. I’m really tired. You can’t force me to do this. I don’t need the extra credit. [He really did.] You’re just trying to make it hard for me.”

“Sorry, son. This is one of those situations when you have to do something. You’ll thank me later.”

Not This Time.

Normally, my boy would ramp up his protests, accuse me of a nefarious plot against him, and come up with some outrageous reasons why this just plain won’t work. But not this time. The fact that we were outside helped. It was a beautiful, sunny day, and the line was quiet. So he wasn’t feeling a barrage of negative sensations. It also helped that I kept scratching his back. He didn’t become cheerful, but neither did he explode.

We spent about an hour in line, moving at a glacial pace. Every now and then, he would offer some protest or excuse, but it was pretty mild. If anything, he just seemed glum. He’ll probably never admit to it, but I think he was intrigued with the prospect of being so close to someone so powerful.

When we got into the gym, my heart sank. There were no bleachers or seats of any kind. Instead, everyone was standing—very close together—and talking excitedly. There were already around 400 people inside, their voices echoing in that hollow, tinny way that only gymnasiums can create. Plus, a loudspeaker system was blaring upbeat music. And more and more people kept coming in. I wondered how in the world my son would make it through this thing.

Reluctant but Resigned.

Not to be deterred, I asked the people ahead of us if they would let us through so that my son could see. There were only a few children there, so they were very obliging: we made it right to the very front of the crowd. Not only did that give us a better view of the dais, but it also helped relieve some of his stress. He didn’t feel as hemmed in.

Still, he looked very uncomfortable. He kept his eyes down, his shoulders bunched, and his hands clenched. He asked a couple more times if we could leave, but I kept massaging his shoulders. This is important, I told him. This is part of our history and heritage as Americans. This is a valuable opportunity for him. This is going to happen. And you are going to write about it.

Considering the crowd and the noise and the seemingly endless wait, I was impressed with how well he was doing. His protests were meek, and he met my determination not with an equal and opposite force but with reluctant acceptance. Part of me felt bad for subjecting him to all of this, but I just couldn’t pass this up.

Are You Fired Up?

Not long after we got to the front, a series of warm-up acts graced the dais. A few local officials spoke, a campaign volunteer gave a personal testimony, and an Anglican priest offered a blessing. Each speaker (except for the priest) asked a variation on the question, “Are you fired up?” And, predictably, the audience responded with huge shouts and thunderous applause. I don’t know why I thought of it, but I almost instinctively placed my hands over Richard’s ears with every eruption—and then promptly returned to my massage as soon as the noise died down.

After about 20 minutes of these opening acts, it was announced that the vice president was about to come out. Just then, my son turned and pled with me, “Please, Dad. Let’s go home. I can’t take this any more. My stomach hurts. My head is killing me. My eyes are so sore.” He didn’t sound desperate, but he was clearly getting more upset. “Come on,” I replied. “This is what we came to see. He’s coming out now. Keep breathing and try to hold it together.”

Negotiations Proceeding Apace.

Then came the magic. He didn’t push back. He didn’t break down. He didn’t lash out. He strategized. “How about this?” he asked. “Let’s stay for just 15 minutes more. I can say I saw him, and I’ll have enough to write about.”

I was floored. My son was experiencing a huge sensory assault, but he was fighting it. He was engaging his intellect, not just giving in to the emotional cascade. At that moment, I realized that he wasn’t negotiating with me. He was negotiating with himself. He was telling himself, “You can do this. You don’t have to give in to the noise and the fear and the anger.”

I really wanted to hear the whole speech. I really wanted my son to shake the vice president’s hand. Heck, I wanted to shake his hand! But I couldn’t pass this up. “It’s a deal,” I said. With that, he turned back to the dais, tense but determined, while I continued alternating between massaging his shoulders and covering his ears.

Vice President Biden came out, flashed his toothy grin, and launched into his stump speech. And through joke after joke, through zinger after zinger, through applause line after applause line, my boy stood there, sad but focused. Not once during that whole time did he try to back out of our deal. Not once did he try to break away. Not once did he turn around and try to beg his way out of this. He made it through 15 grueling minutes, sullen but intact.

He Talked Back!

As soon as the time was over, we turned and left. Pushing through the crowd, we both heaved a huge sigh of relief. It was over. My thumbs were sore from all the massaging, but I was so proud of my son. It was the first time I saw him talk back to the fear and anxiety. It was the first time I saw him separate himself from the symptoms of ASD. It was the first time he saw himself as a fighter and not a victim. I saw him take an important step toward being an independent young man who wasn’t defined by ASD.

I didn’t tell him all of this right then and there. He seemed too battle-weary for another discussion. But I could tell that he sensed the victory as well. There was a new spring in his step as he walked into the sunlight of a beautiful autumn afternoon.

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!