2012

In the ocean of frustrating obstacles and people we have to deal with on a regular basis as autism parents, we sometimes miss the life preservers, the kind and generous souls who walk in and out of our lives. They may be the living saints we work with on a daily basis, or they might wander into our lives at irregular intervals or even just once.

I’d like to tell you a little about one of those good souls and how people like him can make such a huge difference in your life. His name is Jonathan, and he works as a cashier at our nearby Target.

Cashiers have pretty thankless jobs. They’re expected to treat everyone nicely regardless of how rude customers get. Customers often don’t appreciate the rigors of standing on your feet for that many hours doing fairly repetitive tasks for little pay. I’ve seen plenty of customers verbally abuse them for issues at the store well beyond their control. While I’ve never worked a checkout lane in my life, I can’t imagine that I’d last 30 minutes before I became a surly jerk.

Cashiers can be some of our best friends as autism parents. If you were to graph our average shopping experience, it would start pretty low on the vertical axis and go downhill from there. Assuming we’ve made it that far in our often perilous shopping trip, a calm, friendly presence in the checkout lane can mean everything if our child is melting down, ejecting items from the cart, or otherwise at the edge of their limits of tolerance for all things shopping.

Then there are the rare people like Jonathan who go beyond that. Some of my parent friends and I were standing around talking about recent opportunities our kids have had to practice paying for things at a restaurant, ordering something, etc., which brought about how we might practice that in a store. I talked about how we’d set up a little script ahead of time a while back with a cashier at Target so our J-Man could practice saying hello and his name. Without even describing the cashier, a couple of the parents said, “Oh, it must have been that young, redhead man.”

Yep. Jonathan.

He is known because he is kind, a person you immediately know as a good soul. As parents we value those who show us and especially our children respect and kindness. We remember those who go well beyond all expectations to help our children. We think of them as if they are saints, because really they are.

We talked about Jonathan a bit and recommended his checkout lane to other parents we were talking to. He’s the kind of guy who genuinely is glad to see you and help you regardless of who you are. I swear you could have seven arms growing out of your head and be covered in flaming sulfur, and he would greet you warmly and make you feel good about life.

I don’t know him personally. I have no idea what he enjoys, what his aspirations are, or much of anything else about him. As a write that, I find that rather unfortunate. All I know about him is in the context of seeing him where we shop. But I find his genuine kindness and lack of pretense reassuring and heartening. He affirms much of the best of what we as humans are capable of being toward each other.

Through this he’s taught me an important lesson. Most likely neither of us will solve much of the world’s problems. But through acts of kindness to each person we encounter, we can make an enormous difference in the lives of at least a few. We remember those kindnesses, and we pass them on. And that is not only enough, it is quite a lot.

As I’ve said already, not only are people like this a godsend to us in our frayed emotional states, a great cashier or other store employee can be an amazing resource. We want to teach our children certain life skills like practicing communication with people who work at a store, asking for help, paying for items with money, and any of the myriad other things we have to do when we go shopping. This can be great practice for them in gaining comfort in these often difficult and stressful situations.

If you’re like us, you do as much shopping as you can in one place. We don’t have time to go driving around for things, and the more stores we drag the kids to – assuming we get past going to even one – the likelihood of problems and unnecessary stress goes up exponentially. Look for a few store employees you find really kind and helpful, and try to cultivate relationships with them. Appreciate them, respect them, tell their managers how awesome they are, and express gratitude when they help you and your child.

Ask them if they wouldn’t mind participating in a brief social script with your child or working with them while your child pays for an item or asks for something. You are setting up positive, reinforcing situations in which your child will have success. Go to the store at a less busy time of the day if possible so you can do this without feeling rushed. This will give your child opportunities to work on life skills with friendly, helpful people. Plus it gives you an opportunity to spread awareness about autism to people who almost certainly encounter autistic persons on a daily basis.

Oh, and if you’re ever in Raleigh, NC at the Target next to Triangle Town Center, go say hello to Jonathan. You’ll be glad you did.

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It’s World Autism Awareness Day! I went back and read our Autism Awareness Day posts from previous years and found they still capture what I think needs to be said about this day and what it means. However, I’ve found it difficult to keep perspective on this day year after year. Autism for us is a way of life now. The farther into the story you go each year, the more the layers of it build, change, and grow. You live it so completely that it’s hard to take a step back and really appreciate the richness and challenges of our journey and know how to share all this with others.

A couple of years ago, I wrote a three-part “Be Aware” series that listed pretty much everything I thought people should be aware of on this day. There’s Be Aware – For Parents, Be Aware – For Family and Friends, and Be Aware – For Everyone. I’ve been honored at the positive feedback I’ve received about these posts over the last two years. Hopefully you’ll find them worth taking a look at and sharing with people you know.

Last year, I also struggled with what this day means in the post “The Many Flavors of Autism Awareness”. Raising awareness is for most of us a 24/7/365 effort. I decided to take some time last year to become more mindful of all the kinds of awareness we should practice and encourage in others just to remind myself what our journey is all about. Re-reading it today helped me get back into that essential mindset.

Around the first anniversary of J’s diagnosis, I brainstormed ideas for practical actions people could take and created five suggestions for World Autism Awareness Day. I think I was more practical and into bullet points and step-by-step plans then. :-)

What seems almost poignant in retrospect is that the first World Autism Awareness Day (as designated by the United Nations) was about two weeks after J was diagnosed in 2008. It was clear from my words how frustrated and overwhelmed we were. We have come a very long way since then.

I’ll close this with the same words I closed the “Be Aware” posts. It feels like the most important point I want the world to know about me. I talk a lot about lows and highs, challenges and frustrations, exhaustion and hope for a better tomorrow, the trials and the triumphs. Life is a wild rollercoaster for all of us, and those wonderful highs and wrenching lows regularly become emotionally and physically exhausting. But if you know nothing else, know this.

Be aware that I wouldn’t trade my life for anything.

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The CDC has released its updated statistics for number of children diagnosed with autism, revising them to 1 in 88 (up from 1 in 110), with 1 in 54 boys being diagnosed. There will be the usual firestorm of reactions to this from all sides. So let me suggest that everyone just take a deep breath.

I wrote some reflections on autism statistics and what they mean to me in a post a couple of months ago called “1 in”. It’s about remembering what and, most importantly, who we are fighting for.

My reaction to the CDC’s report is probably an uncommon one. I think there’s quite a bit of good news in it.

* More kids who need to be diagnosed are getting diagnosed and are now on the path toward getting the services they need.

* All of our awareness-raising efforts are working. As awareness increases, so does everyone’s understanding of what the characteristics of autism are and what they can do to help children meet those challenges. As a result, more parents and family members are armed with the information they need to ask for evaluations and get the diagnosis their child may need. Medical professionals know much more now about what to look for. I believe we can take these new data as a sign that our efforts are working.

* African-American and Hispanic children have seen the most significant diagnosis rate increases. This is also a good thing. These are – not shockingly – populations who traditionally have not had anywhere near adequate access to medical, diagnostic, and therapy-related services. I take this increase in diagnoses here to mean that African-Americans and Hispanics are seeing improvements in getting this critical access to help. Obviously, we have a *long* way to go in improving this access, however. Way too many kids still are falling through the gaps.

* These data (hopefully) will help us get more funding for services, at least in the future, by showing the vast and increasing scope of need out there. I’m not naive. This will take a while, but these data will help.

There are, however, a lot of things these data do not tell us. One essential concept to keep in mind here is that these statistics reflect the number of kids *diagnosed* with autism. They may have been previously undiagnosed but still had autism. These may reflect actual increases in the total number of autistic children. No one knows for sure.

But are these new diagnosis rates solely the result of improved diagnostic tools, greater awareness, better access to professionals, etc.? The simple truth is we don’t know. I think it’s clear that a significant number of these ‘new’ diagnoses are the result of this, but all? Again, no one knows.

I freely admit that I can’t remotely define what ‘significant number’ really means. It’s just my sense that the systems in place are indeed doing a better job in making sure more and more kids who need services are being identified and served. As that continues to improve, I imagine these numbers will change again.

For me, the actual bad news here is that more families will be fighting for the same vastly-underfunded pie of services. Our own family is already losing critical supports from our county at the end of June because of budget cuts. It’ll get worse for all of us before it even thinks about getting better. Our mission now is to take these statistics and arm ourselves for the next battles to come.

You’re going to see endless new theories about what has brought about these new data and strong defenses of many of the arguments we’ve heard over and over again. Everyone will have a theory, including me obviously. Let’s make sure of one thing, though. Let’s not be a-holes to each other as we struggle with these numbers.

We’re all working toward one common purpose – making sure our kids, adults, and families get the services and supports they need. Don’t lose sight of this. We have a LOT of work to do. Let’s get back to it.

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Sherpa

by Mary on March 23, 2012

Sherpa: a member of a people of Tibetan stock living in the Nepalese Himalayas, who often server as porters on mountain-climbing expeditions.

When Tim runs a marathon, I am there as a “support person” – only I call myself a “Sherpa” instead. Last year, Tim would go for his long runs on the weekends, because I was available to take care of the kids. Those long runs would take about 6 hours, because of having to drive to and from a trailhead. Last year I took care of the kids during the evenings when he went on shorter runs, only lasting a couple of hours, but those couple of hours were during “the witching hours” and I was already pretty tired from work. Last year, I lugged 2 backpacks to the Start line at 0-dark-thirty, only to realize that he wouldn’t actually NEED anything in the backpacks until later in the race. I drove to different points in the race, where I could hand him Gatorade or gels or just give him a kiss and encouragement. I am incredibly directionally challenged, and it takes me forever to read a map, but I did it. I met him at the Finish line, helped him to the car, got him food and drink, helped him back up from the ground, and drove us home. I made a lot of sacrifices so he could do something he had always dreamed of doing.

This year, because we had childcare for Dale Jr, Tim did his long runs during the week. Heck, he did his 2-3 hour runs during the week. It completely changed the way I felt about his training. (Well, not completely. It still kind of sucks when he’s gone for a long time…) When we went to the race, I carried a camera to the Start line. I still met him at different points during the race (more points this time), and the maps and directions he carefully printed out and labeled for me were not helpful, because the race people closed off different roads than they did last year. I still made it to the meet-up-points, but there was a lot of driving around my ass to get to my elbow to get there. I really can’t explain how stressful that is for me. I met him at the Finish line, walked with him to get food and drink, and drove us home. (See, he did better this year – he was able to get his own food and drink, walk by himself, speak in complete sentences, and he didn’t lie down in the parking lot!)

Nobody except Tim, and other support people, has ever had anything to say about what I did. It was expected. I was a Sherpa. Sherpas don’t get the glory when those guys climb Everest, but oh my god how important they are. The famous guys could never have made the journey without the Sherpas. The Sherpas carry the loads of equipment, break the path, do all the scut work, without the glory.

I feel like I’m a Sherpa in real life. I do so much in the background, so much that other people don’t see, but because Tim is the “at home parent” and because he does drop-off and pick-up and takes care of most of the paperwork (OMG at the paperwork), he gets the credit. It doesn’t hurt that he stands out being one of the only dads doing those things. It’s just that I do the cooking, laundry, most of the cleaning, grocery list and shopping, childcare every evening while cooking dinner; you know, the daily slog that people expect the “at home parent” does. I also work full time. Without me, there would be no dinner, no clean and folded clothes, no clean bathrooms, umm no mortgage… And it’s expected. It’s my job. I’m the Sherpa. I don’t even feel like I’m a good Sherpa, because our house is a wreck.

Every once in awhile, I’d like to be the Mountain Climber; the one with the Finisher’s Medal; the one who actually fulfilled her own big dream. Except, I don’t have big dreams anymore. I have small dreams, like sleeping for 8 whole hours. Like living like I did before I had my colon removed and didn’t have to be near a damn bathroom every hour. Like losing the gazillion pounds I’ve regained since my surgery, since I can’t eat the way I did before. I started running (and I suuuuuck at it) and it just feels like one more way I’m failing now. I doubt this is something that Autism parents alone feel, but I feel like we have fewer breaks. A date with my husband where we aren’t rushing to be back by 8 to put the J-man to bed because he will freak out otherwise? It doesn’t happen. Being able to call a regular baby-sitter and do something spur-of-the-moment? It doesn’t happen. Going out in public as a family without the constant dread that we will have to (literally) pick up and run? It doesn’t happen. I need a dream. I need a break.

Instead, today begins 3 weeks of track-out from school. I, like every other parent, dread track-out. I hate the lack of structure; I hate waiting to see WHEN (not if) the J-man will absolutely lose it; I hate the person I become from frustration and sheer exhaustion. Tim and I joke about needing a “sister wife” especially during track-out. Maybe we’ll start using the term “Sherpa” for that instead.

Today, take time out to thank your Sherpa. And if you ARE the Sherpa, I would like to say a heartfelt THANK YOU to you as well.

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It’s not uncommon for people to look at me like I’m a bit unstable when I tell them I’m running another marathon. It’s quite likely I am a bit unstable but probably for other reasons. It has been tiring to say the least trying to manage all the training for this weekend’s marathon and the everyday demands of family, home, and work. Obviously from my lack of posting here you can see that available time is almost nonexistent. So why do another marathon?

A couple of days from now, we’ll observe our fourth Diagnosis Day, the day on which we received our J-Man’s autism diagnosis. This has, not surprisingly, been a day filled with a variety of emotions over the years.

And not coincidentally, this Sunday is my second marathon. Why? My reflections in “Diagnosis Day and a Tale of Two Marathons” last year still sum it up nicely. These are some of the words I wrote on Diagnosis Day last year, the day before my first marathon.

So tomorrow I will celebrate everything I’ve learned from my kids and from my life. I will proclaim that even with all these challenges we face and all the effort they require, I am stronger than ever for it. I have come back from a difficult place in my life. When some people assume that parents of special needs children are doomed to an existence of unending struggle and despair, maybe now I can show them it is possible to be that parent and do some pretty kick-ass stuff. And tomorrow I’ll think a lot about my grandmother because I think that’s the kind of attitude she would appreciate and want me to follow in life.

Four or five hours after this weekend’s marathon begins, it will end. The marathon of our lives will continue on. But now I know how to run marathons. I know how to train for them. I know how to get up off the ground on the most difficult days and keep putting one step in front of another until my feet are solid under me again. And I know all this and more because of these courageous, adventurous, determined little boys who taught me to believe that what seems impossible never is.

But why do it again? Didn’t I prove my point by doing it once? I’ve had plenty of hours on the open road these past months to ponder that question. And this is the best conclusion I’ve come up with.

Perhaps one of the best lessons we can teach ourselves as parents is to pursue and value whatever consistency we can muster over the long haul. It’s not ever going to be enough for us to do something once. We have to wake up every day and be as ready as we can be for the challenges that lie before us. There is never going to be any one-and-done for us. This has turned into my way of training for real life more than any marathon.

At its most basic level, I simply love to run and am enjoying its many health benefits. It’s made me a better and healthier parent. Beyond that, running a marathon has become in no small part an act of defiance, that I won’t let the challenges that often pile up around us to keep me down. I’ve learned that I can overcome a great challenge, then do it again, and keep on doing it as often as I choose to if I am determined enough.

As wonderful as I make it sound, there’s really nothing glamourous or mystical about doing it, though. I show up and do my training. I log my miles in the same way that I try to show up and do my work, attend to the needs of my family, and meet the various other responsibilities in my life. I don’t necessarily do any of this well – far, far, far from it – but I do try my best, and most of all, I show up. I truly think that showing up is 80% of just about everything.

Not surprisingly, running a marathon is hard. It’s the hardest physical thing I’ve ever done. I started hallucinating in the final miles last year. I couldn’t feel my feet toward the end. I turned into a brain with legs running on instinct. It’s reminded me of a lot of days here at home trying to figure out what we’re doing and find a way to overcome the mounting challenges we face. Many days it’s so hard you just go on instinct.

But when I crossed that finish line last year, my life changed forever.

To paraphrase the marathon saying: At mile 23, I thought I was going to die. At mile 26.2, I discovered that I was too tough to kill.

I discovered that I could do it. That discovery has meant more to me than I can express. I finished in the slowest 20% of runners that day, and it didn’t matter. When I thought about that, an affirmation came to mind.

I am not fast, but I can endure.

That has come to mean a lot to me as an autism parent. I’m not Super Dad, but that isn’t the point. I do my best each day – which some days amounts to little more than breathing and getting my pants on – and I keep moving forward with every ounce of strength I have. When we put one foot in front of the other, we can and will get there.

We are all marathoners, and we can do it.

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Yeah, I know I said I be blogging about our Decrapify Your Life project, which implied I’d be doing it more regularly. I guess it says something about the great challenge of this kind of life reboot that several weeks into the year I’m just now writing an update!

But I have been working on my goals, and I think I’m making some progress. Here are my goals for 2012.

  • Eliminate our revolving debt. By Dec. 31, 2012, all credit card debt will be 0. I won’t announce our starting debt amount publicly, but let’s just say it’s a lot.
  • Get serious about my freelance business, expand my work, increase revenue two-fold over 2011, and do projects I enjoy.
  • Complete and self-publish an e-book about autism.
  • Donate, recycle, or throw out 800 cubic feet of stuff. (Measuring that should be a hoot.)
  • Run 1,000 miles in 2012 and complete at least one marathon, and if I can find one nearby an ultra-marathon (something greater than 26.2 miles).

I have discovered several insights so far that I’d like to share.

You gotta start. Well, that’s pretty obvious, but often we don’t actually take the first step toward achieving what we want so it bears repeating. There’s no point in figuring out everything before you start. As a matter of fact, it’d be a huge negative because you can’t, so you’d never actually start anything. Just go do ten minutes of something and start. Eventually, you’ll get things moving.

Don’t judge yourself for the mess you’re in. Don’t lament, wail, or rend your garments in anguish. It took a long time to get here, and it’ll take a long time to get out of it. This is OK. Show yourself some compassion. Don’t give up!

It’s about building momentum. It takes a lot of energy to overcome the initial inertia of getting started making changes in your life. In the beginning, the changes are frustratingly small. But they do add up, slowly and inexorably. Keep pushing the boulder and eventually it’ll roll down a hill. With any luck, it’ll squash some things on the way down.

Growth and transformation take time, perhaps a long time. We don’t expect our kids to just try something different for a few days and suddenly master it. Why should we have the same unrealistic expectations of ourselves? Again, it took us a long time to end up where we are. It will take us a while to get out of it.

Focus your energy on one maybe two things at a time. That’s it. I have five goals for 2012, and I realized in a huge hurry that I can’t focus on them all at the same time. It was completely freaking me out. This may be the most important revelation I’ve had so far because it’s the one that got me to let go of some of my raging guilt. I can’t do it all, and that’s true for every one of us. So I focused the last few weeks on training for my marathon, which is next month, and on money-generating activities like my freelance work and working on our taxes, which will be income since we will get a good-sized refund this year. (Yay!) This has the bonus effect of getting us farther toward our goal of eliminating revolving debt in 2012 by increasing our income without stressing about the debt itself.

Debt reduction feels ten times harder than a marathon. The simplest solution to reducing debt is to make more money, send it all to your credit card companies, and stop using your credit cards. That’s all much easier said than done, obviously. I have started discovering ways we’ve been sabotaging our debt in the past that sounded perfectly rational at the time. Things like “We’ll just pay it off at the end of the month” or “We’re building up rewards points” or “The interest rate is really low, so what’s the big deal” are simply rationalizations of what is, to be honest, just bullshit. If you can pay it off every month, use cash. If you can’t pay it off regularly, the rewards are almost never worth it.

Regardless of what Dave Ramsey says, there are going to be instances, obviously, where something goes to hell and you don’t have the money. Your car needs a $2,000 repair, you get a $7,000 doctor bill, your child doesn’t stop needing therapy, and on and on. As they say, some months there’s just way too much month left at the end of the money. I do think most of us can do a lot better, though.

We are slowly trying to migrate to a cash-based plan of buying things only with either paper money or debit cards. I’m looking into using an envelope-based budgeting system as well in hopes of putting some checks and balances on spending. It’s been insightful how much you have to change to go this route, though. We’ve connected our credit cards to so many accounts and whatnot (e.g., some auto-bill pay, Amazon) that it’ll take time to unravel that.

Decluttering our house feels a hundred times harder than a marathon. We’ve made very little progress on this, and that is depressing. I decided for now to let this sit for a few more weeks without worrying about it. I really have only been able to focus on one or two goals at a time. After the marathon, I should have more energy to devote to this mammoth project. And on a related note…

Allow yourself to table goals for a while in the interest of sanity. You can’t do it all, so don’t try. And Lord knows our lives are so chaotic and unpredictable that you have to show yourself some compassion. I had really hoped to finish a small e-book in time for World Autism Awareness Day in April along with a much needed blog redesign. Most likely neither will happen by then. I’ve felt pretty much on the ragged edge lately, so I’ve tried to give myself some grace to let some things go a couple of months to promote sanity. The positive news is that in letting those things lie fallow for a while but still having them as 2012 goals, I’ve found the creative juices are still percolating under the surface and ideas are coming on how to do them well when the time comes to pick them up again.

I wish I had a brilliant roadmap on how to make big changes in your life, but I don’t yet. About the clearest insight I can offer right now is, this stuff is hard. One more hard thing isn’t exactly what any of us need right now, but look at it this way. As parents, we know a lot about things that are really challenging. Think of all the obstacles and barriers we’ve overcome before. We’ve done it before, repeatedly, and we can do it again.

What fuels me here is that this is one challenge I know will pay huge dividends when it’s done. A more decluttered life with much less debt, fruitful work I feel good about, autism resources I can contribute to helping the entire community, and a continued commitment to maintaining good health.

So maybe this is better wisdom. Imagine the person you want to be and the life you want to have. Then imagine yourself not as a person striving toward that goal but instead as the person living that life. I imagine my life with less clutter and debt, work I enjoy, and being a positive contributor for many things autism, and I draw energy from that. Give it a try. And if you have ideas about what works for you, let us know!

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Pre-Game Speech for Parents Just Receiving an Autism Diagnosis

February 15, 2012

Someone asked me what advice I would give to parents who just got an autism diagnosis for their child. I have lots of information I can give them, but so does everyone else. All you get when you get a diagnosis is information. You are buried in handouts, books, professionals telling you stuff, and all [...]

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1 in

January 30, 2012

I will risk pissing some people off here because I think this has to be said. The National Autism Association posted a PSA about autism a while back. Watch it and then continue below for more discussion. Let me start by saying that, while I am tired of a great many things, after seeing that [...]

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