I had one of the greatest honors of my life the other night.

The three teachers who comprise the teaching team in the three separate, structured classrooms for autistic kids at our elementary school and the two teaching assistants in J’s class were honored by our local autism society as the Teaching Team and Teaching Assistants of the Year.

We’ve been at this same school since J began preschool almost four years ago. We have been thankful for our teachers and the school approximately 30 times an hour from the first day he walked in those doors. After everything we’ve been through together, they are basically family to us now. If there were an autism Mount Rushmore, we believe they’d be on it.

There’s no way to fully capture the depth of their skill and passion for teaching our kids. They have done more for them than we could ever write out completely. And there aren’t enough words to express our gratitude for them. But I did try.

As part of presenting them with their awards at the banquet, I read this piece I wrote in honor of everything they have done for us and all the families at our school. When someone does this much for your child, you can’t ever repay them for it.

But it was my privilege to stand up in front of a room full of their peers and administrators and say with my heart that these amazing teachers have, through their talents and love of our kids and teaching, given us a gift beyond value – a hope-filled future for our kids. And we hold them up as the highest examples not only of teachers but of people. We should all aspire to be as awesome at what we do in life as they are.

These are my words of thanks to them.

—–

We Will Remember

For every new word our children speak,
for every hug and smile they give us,
We will remember.

For each marvel our kids amaze us with,
for every act of kindness they share with another,
We will remember.

For encouraging and believing in our dear children,
for making each child feel like your favorite,
for helping them to love and feel loved,
We will remember.

For every scary new thing they bravely attempt,
for every problem they solve on their own,
for every so-called ‘impossible’ goal they achieve,
We will remember.

For being an unshakable team when so much seems against us,
for your lessons of perseverance,
for teaching us that together we are stronger than we are alone,
We will remember.

Someday when our children walk across the stage,
when they get their first paycheck,
when they go to live on their own,
We will remember.

For as far as they will yet go
we know how far they have come.
We will remember
that you made this possible.

For your amazing gifts,
for your gift to us
of our children’s bright future,
We will remember
and speak your names with honor
as the foremothers of their futures.

We will remember yours is not just a classroom.
It is hope,
a haven, a sanctuary,
a place where wonders are born and reborn every day.

We will always remember.Similar Posts:

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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.Similar Posts:

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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.Similar Posts:

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• 1 in

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.Similar Posts:

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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.Similar Posts:

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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.Similar Posts:

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• What I’ve Learned So Far About Decrapifying Our Lives

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!Similar Posts:

• Goals for 2012
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• 2012 – An Invitation to the Year of Getting Your Crap Together
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• What Blogging for a Year Has Taught Us
• Why Marathon? Reflections on Diagnosis Day

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 sorts of random people giving you advice.

So I’m not going to offer any practical advice here. Instead, I’m going to pretend we’re in a locker room getting ready for the biggest game of our lives against the most powerful challenge we’ve ever faced, which is essentially true. We could all use a good pre-game speech.

Listen up, everybody.

You got an autism diagnosis. I know you feel like someone just dumped an avalanche of rocks on you and then threw the mountain on top out of spite. You are angry. You want to go kick something’s ass. You don’t know how you’re going to do this. You want to blame somebody. You want vengeance to rain down upon whatever brought this on your child and you.

You will become too exhausted for this anger, then you will despair. You will plead and bargain with any deity you can think of. You will become too exhausted for anything at all. You will think you can’t do this.

And you will be wrong.

Right now the odds are piling up against you like water in a tsunami coming onshore. You will never run low on people telling you how hard this is and how desperate it will all get. No shit. Life is hard. Anything worth doing is hard. And when something is this hard, there will be times when you think you cannot possibly make it. You will think there’s no way you can get up off the ground again let alone kick ass and thrive.

But you are strong.

People and institutions will try to kick you down. Some will succeed. But decide right now that you are going to get up every time — every, single, damn time — no matter how much it hurts, no matter how much your body and your will refuse to cooperate. Decide now that you will not quit, no matter what it takes. Promise this. Swear it to all you are and upon every fiber of your being and every last thing you hold dear in this world. Swear that you will give everything you have to this mission that is now your life’s work.

You are scared now, likely more than you’ve been in your whole life. I hate to break this to you, but the fear will certainly get worse. You will swing between every extreme emotion like a pendulum on amphetamines. The lows are awful. The highs are transcendent beyond words. This is your life now.

And you are going to make it. I promise.

At some point, everything will go to crap. You will reach the point where you feel broken and undone. It will happen more than once. No, no BS today. This is how it is: It may happen every damn day. You will want to quit. You will be sure you’re a failure. You will not know what to do, where to turn, or how to even begin climbing out of the mess you see your life has become. If I’m scaring you right now, I’m sorry. I really am. You need to know what you’re up against. We’ve all been through this valley of shadow again and again, and so will you.

But I’m saying all this now so you’ll understand something absolutely fundamental. Every autism parent has been through this. But look around you. Look at us, all of us. What do you see?

We. Are. Still. Here.

And you bet your ass we are not about to quit. We may get so tired we can’t even stand, but we are still here beating down every wall, taking on every challenge, tearing apart every obstacle because we believe. We believe in our children. Somehow, someway every time we end up in that valley of shadow, we believe we will keep finding our way to the promise at the other side because that is who we are. And somehow, someway, we prove ourselves right time and time again.

Whether it feels like you’re just yelling at an unbreakable wall, keep going. No battle we fight is in vain. Even if all you do is knock a little dust off that wall, there will be less wall there than there was before. It does matter. It all matters. Push a stone an inch or throw it through a window. It all makes a difference.

When you find yourself at the bottom of that valley, face down in the dirt, with the weight of everything bearing down on you, remember. Remember the promise you made this day.

And remember that we are still here. And we will face each and every challenge together.

Now, go. Shake the earth so that no one will ever forget everything our children are and can be. Shake the foundations of anyone and anything that stands in their way.

Today is your moment. Not tomorrow or next week. Today. Right now. Go yell it out your window. Better yet, go outside and announce it to the world. A new era is dawning in our lives. Claim your power. Our cause is just and right. Call out to the world that we are here and our children are amazing. Shout that we are coming to change the world, and together we are unstoppable.

Our children look to us to make their world a place where their light can shine. Let’s go make it happen.Similar Posts:

• What Blogging for a Year Has Taught Us
• Two Be or Not Two Be?
• Diagnosis Day – 2nd Anniversary Edition
• Diagnosis Day and a Tale of Two Marathons
• A Journey of a Thousand Miles
• There Are No Shortcuts – Ideas For Making Better Therapy Decisions
• Diagnosis Day

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 PSA I realized that I am particularly tired of two things in the world of autism right now: doom-filled ads and statistics, the former I’ve seen referred to recently as “autism doom porn.” I realize that both of these are intended as instruments for awareness raising with a public that knows little about autism. I still think they only serve to bring us all down.

1 in 110 is eye-opening. The progression from 1 in many thousand drags you into the downward spiral toward doom. 1 in 70 feels like a cataclysm.

Statistics suck. They can make the same thing seem wonderful or awful.

109 in 110 seems like a typo. 69 out of 70 sounds like great odds. Neither would do much more than leave you a little confused and scratching your head about what the big deal was. But that in itself isn’t my point.

Statistics seek to classify, group, and analyze things as objects. Those savvy to autism know what the first set of statistics above refers to. I could, however, just as easily have been referring to oranges or pretzels. Regardless, these numbers aggregate, classify, and simplify. We believe autism is much easier to understand when you sort it out like this. Of course, in the process you flatten all the diversity out of it and erase the personalities of every one of our children.

Some think this makes good TV and fundraising ad copy. At best I find that very, very debatable.

So on to my version of autism statistics. There are only two statistics that matter to me right now. I’m going to be obnoxious enough to say they should be the only two that matter right now period.

1 in 1.

1 in infinity.

If you’ve met one autistic person, you’ve met one autistic person. You haven’t met some 1 in 70 or 1 in 110. You’ve met 1 in 1.

They have a name. They have a personality. They aren’t a number. They have potential. They have feelings. They are wonderfully made. They are.

They are unique in all the universe. There has never been anyone else like them, and there never will be. They are the most precious gift of all. They are irreplaceable. They are 1 in infinity.

The other statistics may help raise money and supposedly make for compelling awareness campaigns, but they set a dangerous tone. We get caught up in this specter of doom, and that rarely does us any good. In fact, I think it’s destructive. We don’t need this in our lives. We know life can get really hard. We don’t anyone to tell us that. We need a different perspective. We need a spirit of hope and a way toward transformation.

I think these doom-filled ads work against the very changes we ultimately seek. The public have become numb to a generalized, widespread sense of impending doom. We get it from everywhere. People don’t get excited about causes where they are fighting some vague, nameless, statistical doom either.

Why do Heifer International, Save the Children, and Kiva – to name but a few – raise so much money and bring about such transformation in the world? Because you are buying a goat for a village, supporting a specific child, or helping fund a specific entrepreneur. You aren’t donating money to combat hunger or some vague, evil force in the world. You are doing something specific for one person or one village. You become involved in individual stories of transformation and hope. You become invested in their future.

When we raise awareness, we often want people to be as passionately involved in autism as we are. That’s rarely going to happen. We certainly can’t scare people there. We want everyone to join and fix the grave injustices we and our kids face. We’re asking for too deep and too vague an investment. We are the ones with all our skin in the game. The general population will never have as much at stake here as we do.

What do I think the answer is? Tell your story. Proclaim both your challenges and your pride and everything else. Speak of every joy and lament. Describe what it feels like when your child is finally able to do something that seemed impossible before. Become like the wandering storytellers of old. Share the whole, rich landscape of your lives together.

Tell your story to educate and inspire. Ask the person you tell it to for one thing, one thought, one action, one small something. Don’t ask for the world; just ask for one small step. At worst, we get one helpful act of kindness, one seed of good planted. At best, maybe we gain a committed ally and advocate. While none of us on our own can accomplish a task like “save the planet” or “fully fund disability services in every state”, perhaps all the people around us can achieve something like “the next time you see a child throwing what you think is a spoiled temper tantrum in the store, consider the child may have needs you aren’t aware of, and share a kind word or a helping hand with that parent.”

And that is how change begins, takes root, and grows. No one’s statistics will ever do that.

We need to see the 1 in 1. We need to see the 1 in infinity. We need to start there. Make a difference to one child. Celebrate the achievements of one child. Rejoice that we have been given the impossibly rare gift of each one of them. That’s how the world changes, not with this statistical doom porn.

Because each of our children is the only one like them. They only get one shot at life. We only get the gift of them in this world once. Let’s go act like that’s true.

[Update 3/29/12 - Today the CDC released new statistics stating that 1 in 88 children now have an autism diagnosis, 1 in 54 for boys.]Similar Posts:

• The Many Flavors of Autism Awareness
• World Autism Awareness Day – A Personal Retrospective
• Holiday School Party – Things Worth a Thousand Words Edition
• Pre-Game Speech for Parents Just Receiving an Autism Diagnosis
• What Blogging for a Year Has Taught Us
• Learning How Not to Say “I’m Sorry.”
• Diagnosis Day – 2nd Anniversary Edition

The Decrapify Your Life project is underway. (It now has a pseudo-official name!) Clearly the need is there since it’s taken me 22 days into the new year to post this! But I have been working on my goals anyway at least.

Several of us have banded together to make some changes in our lives in 2012. You’re still welcome to join us. Just let me know (tim -at- bothhandsandaflashlight.com). We’re starting to make our way together on Facebook and by e-mail. Yeah, we’re feeling our way around in the dark trying to figure it out, but that’s how a project like this has to start.

In looking at goals for the upcoming year, one principle I’ve become enamored with is having as few goals as possible. Instead of having a bunch, not doing any of them well or at all, and then just getting mad at myself and frustrated with the cosmos, I’m going to try the approach of having as few goals as possible but making sure I do all of them. If you have too many, your attention gets scattered and overwhelmed. Choose a few, then focus like crazy on them. And by ‘few’ I’ve settled on five total for the whole year, and I am wondering whether that’s too many.

Here’s what I’ve tried to do with them. I’m patterning my goals after IEP goals – specific and measurable. But just like as parents we want to set challenging goals for our kids and assume they are capable of great things, I’m also setting the bar high for my goals for the coming year. And I made them congruous with my three words for 2012, so I really have a clear sense of my mission for the year.

However, with big goals you have to be somewhat careful or you can easily get overwhelmed. When I ran a marathon this past spring, I really tried to never think about the gravity of running 26.2 miles until the actual day of the race, and even then I tried not to think about it any more than was necessary while actually running it. I divided up training into specific miles for each run and then did them on their appointed day. Within each run, I divided those miles into steps and smaller goals. (Just run to the next light pole!) And because I focused so much energy and attention on it – by committing more fully to fewer goals – it worked. I spent most of my 37 years dreaming about that finish line. This is how I finally did it.

It is pretty crazy to think about running 26.2 miles at one time, but when people ask me how I did it I seriously say, You just show up regularly to train and take the steps over a period of many months until you get there. The process isn’t magic or mystical. You can’t run anywhere until you run the next step. That’s the key. So, I know I’ll need to break my big goals down into tasks, intermediate goals, and bite-sized chunks.

So if you want to participate at home with us, that’s my first suggestion. Create specific, measurable goals for 2012, and create as few as possible. I’d say no more than five, and the fewer the better. If you complete your few goals early, awesome. You can start on another batch then! Who cares if you’re reading this in January or later in the year. Just go ahead and do it. There’s nothing special about beginning first thing when the year starts.

I’ve mentioned this before on Facebook, but I’ve become an avid reader of Zen Habits. He’s shaping the way I look at simplifying life. I’m the staggering village idiot compared to his mastery of things, but he started out not knowing how to do this either. So I’d give him a read when you have the chance.

This is going to be quite an adventure. We’ll screw up a lot of things, learn even more, and eventually find our way. I really believe that all we need to do is commit to the goal of decrapifying our lives and then taking all the steps – one at a time! – needed to reach the places we want to end up. That combined with the support of other people with similar challenges doing it with us is a recipe for finally making some real changes in our lives.

What this will ultimately look like will vary from person to person. It has to be the right outcome for you and your family. I’m still refining the specifics of mine a bit, but here are my goals.

• Eliminate our revolving debt. By Dec. 31, 2012, all credit card debt will be 0. I won’t announce our current debt amount publicly because that seems rather risky given unscrupulous people out there, but let’s just say it’s a lot.
• Get serious about my freelance business, expand my work, increase revenue two-fold over 2011 (the measurable part), 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).

How in the hell am I going to do this? One step at a time equals unstoppable forward progress. You can zig, zag, stumble, go backwards a while, and stagger like a drunk along the way and still make forward progress. It doesn’t have to be pretty. No one is handing out style points. This is your life. Make it happen in any and whatever way works for you.

And I’m going to blog it out. I’m going to do this publicly and be held accountable. I’m going to document it so that at the end we’ll understand what worked and what didn’t so we can all do it year after year. We’re going to learn together and make real, lasting, positive changes in our lives.

I invite you to join me in this year-long project. I’m working on setting up a separate part of our blog for this in hopes of keeping things a little better organized. This will be part me blogging out loud how I’m doing, what I’m learning, and generally being accountable to my goals. I’d like other people to join in that process of checking in, sharing insights, and mutual accountability. I was part of a private Facebook writing group in November that did wonders for everyone in staying focused, getting encouragement, and making sure we all reached our goals. So I’ve set that up on Facebook for any of you who want to join me in the Decrapify Your Life project. Just let me know.

I’m really excited about this. There will be plenty of steps forwards and backwards along the way. We’ll screw some things up and enjoy many successes. We’ll feel like we’re failing and then discover we actually do kinda know what we’re doing.

We’re heading into uncharted territory. We’re going to have to pave the road as we go along. But where we end up at is going to be awesome. I believe it.

”Roads? Where we’re going, we don’t need roads.” – Dr. Emmett Brown, Back to the Future

Similar Posts:

• What I’ve Learned So Far About Decrapifying Our Lives
• 2012 – An Invitation to the Year of Getting Your Crap Together
• Three Words for 2012
• A Journey of a Thousand Miles
• What Blogging for a Year Has Taught Us
• My Three Words for 2011
• What Does ‘Strong’ Mean to You?

Unbeknownst to us, the following things were happening in December. It looks like Scrooge was working in shadows this year.

On December 1, a rule passed by our county that no one seemed to actually know about went into effect dictating that any family who made over 300% of some income limit (which we think is the poverty line, but no one actually seems to know this even now) would no longer be provided disability-related services for their children. Apparently this included us, though we still have no idea 300% of what.

Under these services, J has received 7 hours of developmental therapy per week. He has made enormous progress with his developmental therapist, who we think should be fast-tracked to sainthood. Originally he got 10 hours, and we found out later he should have gotten 12, but in September this was reduced to 7. We also have gotten case management services, which among a few other things essentially processes the paperwork and monitors the availability of CAP/Medicaid Waiver slots. Admittedly the latter is a tragic joke right now because the wait list is measured in several years at this point. There’s a growing dread among many of us that these slots may NEVER become available.

On December 21 – yes, three weeks after the rules went into effect – our case manager got a list of kids eligible for services, and J was no longer on it. No explanation, no warning, no nothing. This went into effect December 30. To make it worse, no one at our case management agency told us until December 28. So, the first time we knew of any of the above was 48 hours before we would lose all services. Oh, and pretty much everyone was on vacation for the holidays.

Ponder all that for a moment.

We were then told our only recourse was to file a financial hardship appeal. So here we are during the holidays, my best friend who I basically see twice a year is in town visiting, and there we are scrambling trying to fill out these forms and gather a pile of supporting documentation for our appeal. These included last year’s tax forms, proof of all our 2011 medical expenses, our health insurance info, copies of proof of residency documentation, and for good measure J’s 27-page IEP. I thought about pricking my finger and running it across one of the pages in case they needed some DNA.

We had no real optimism that this would work, but you have to do it. Obviously nothing was going to happen until January 3 when everyone went back to work. So we waited and started desperately trying to figure out what any plausible options might be. I looked at stuff around the house we could sell.

We were shocked to find out on the 3rd that we were granted a six-month reprieve. Our appeal was accepted at least until June 30th. After that, who knows. I guess our $12,000+ of medical expenses in 2011 were in some way persuasive. I suppose I should be thankful, but after all that groveling I’m feeling a bit short on dignity.

In the warped reality we live in, probably the only way we’ll get to keep services beyond that is either for the rule to be rescinded or temporarily lifted by legal order, or for one or more of us to get really sick and pile up a bunch more medical bills.

Yes we won what amounts to a proverbial stay of execution. Our future odds are pretty long, however. There are some questions as to whether our county is acting legally here, but that’s something we haven’t had a chance to explore much with anyone yet.

But there’s a much greater problem that frames the enormity and horror of this war over services and supports that affects every last one of us. Many states – ours included – are pillaging disability services budgets and cutting them into oblivion. There may be no more wait lists for things like CAP/Medicaid Waiver slots because there may no longer be anything to wait on.

These are bleak times, but we only have one choice – accept the challenge and fight. If we roll over, our children’s futures are in danger. Services lost may never be restored. I know we’re all tired, and it’s just one more damn battle to fight. We can take a little while, bemoan it, get depressed over it, stare at the wall, eat a dozen boxes of donuts, yell and be angry about it, and curse everyone we can think of.

Get it out of your system as best you can. Then get up off the floor, grit your teeth, set your jaw, and say two important words.

Game. On.Similar Posts:

• There Are No Shortcuts – Ideas For Making Better Therapy Decisions
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As I’ve mentioned in the past, instead of New Year’s Resolutions I do Three Words. These three words will act as both a sort of mission statement and a set of guiding principles that will focus my efforts and goals for the year. (See my words for 2011 and 2010.)

So I’ve selected my three for 2012.

Simplify – This one is making a return appearance from 2011. I didn’t do very well with it last year, but I know this is an essential part of what I need to focus on in 2012 to make a lasting difference personally and for our family. It will also be a fundamental part of Project Get Our Crap Together, which I’ll talk more about soon.

My major focus here is to get rid of as much clutter and possessions we don’t need as possible. We’ll either donate it, sell it, recycle it, or trash it. Our house looks perpetually like a tornado-ravaged landfill, and it really affects our ability to do all sorts of things. Plus, we just have a whole lot of things we don’t need, and I know there are people out there who could make use of them rather than us just warehousing it here in this storage building we call our house.

I also want to simplify my commitments. I want to be able to invest myself as fully as possible in family, health, and work (particularly work I love) and those related goals that are most important to me. I will need to learn to say ‘no’ almost to the point of ruthlessness. This will not be easy, but it is necessary.

Life has been very challenging in large part because it has been so overwhelming to me. I think ‘simplify’ is the focus that will help turn that around.

Liberate – I thought a lot about this word before I wrote it down. It has numerous layers, each of which serve a vital purpose in our family. As important as ‘simplify’ is, ‘liberate’ may be even more so.

Our recent debacle of our county taking away all of J’s non-school services and our case management services (see our Facebook page or stay tuned for a future post) was the sewage icing on top of what is driving the need for ‘liberate’. I am sick and tired of others having so much power over us and our kids’ futures. So I want to spend 2012 reclaiming as much of that as humanly possible.

But this spans much more than just J’s services. It covers many facets of our lives. We are in too much debt, and I want to liberate us from that debt and the power banks have over us. We can’t provide the kids with what all they need (e.g., preschool options for Dale Jr., therapy services for the J-Man, etc.) and there are numerous things we need to do on our house, so I want to liberate us from insufficient income.

I am often directionless – to put it mildly – in the way I spend my time and have yet to learn the best ways of getting things accomplished in the midst of chaos. I refuse to believe this is just the way it is and that I can’t do anything about it. I want to learn how I can liberate my time so I can get work done, make enough money, and still have the time I want to be a good dad and husband and be fully present to the kids and Mary.

I have for too long given my power over to other entities, none of whom ever have our best interests at heart. This needs to be the year we start reclaiming that power. Much of this will involve focusing on my freelance business and my first serious effort to concentrate on becoming an entrepreneur rather than someone who just dabbles in freelancing on the side. I have a lot to learn, but I have already started making plans and progress on this. And Lord knows I have tons of motivation now. I don’t think frugality is going to gain us anywhere near enough to help us with the ‘liberate’ project. The obvious, and I think much more effective, alternative is to increase income any way we can.

Ship – This is a lot like ‘finish’ was last year, but it’s more specific. I do plan to finish another marathon this spring and hopefully an ultra (greater than 26.2 miles) later in the year. But ‘ship’ is geared toward finishing some writing projects I’ve had in the pipeline forever in addition to actually spending some real time concentrating on this blog. My primary focus early in the year is to do a redesign of this blog and to finish a short e-book in time for World Autism Awareness Day in April. The word ‘ship’ implies not just finishing something but releasing it out into the world. It’s one thing to have eleventybillion words stashed on my computer (plus or minus a few billion), but I don’t think that makes any real difference in the world until I assemble them and let them loose.

So there you have it. If you already have your three words for 2012 and want to share, I’d love to hear them. If you haven’t, it’s never too late to choose them. The year just got started, and there’s a lot of 2012 left to work with. This is a great year to take control of some things in your life and make lasting changes. Take your time, pick three words that will make a real difference for you and your family, and go for it!

P.S. – And consider joining us for our new Project Get Our Crap Together! We’re building up quite a team to make some big, positive changes in our lives this year! Similar Posts:

• 2012 – An Invitation to the Year of Getting Your Crap Together
• Goals for 2012
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• What Does ‘Strong’ Mean to You?

Most of our days are filled with a variety of challenges, which often come with a mix of gifts, frustrations, and everything in between. Then there are the rare days when everything coalesces into this unending day of goodness.

Friday turned into this kind of day. It started out with a string of good happenings. Mary made me cookies. I got the stitches in my back out. (Dermatologist… again.) Pathology report was clear this time (previously was very abnormal but thankfully no melanoma). I received – and immediately deposited – a nice-sized check from a client, which will go straight toward Project Pay Off the Credit Cards when it clears. We got a startling amount of holiday and regular life stuff done. I said on Facebook after that, “It’s all gravy from here.”

So it turned out there was a lot more gravy to come.

That evening, out of the blue Santa showed up at the house in the back of a pickup truck. (I kid you not! It’s the South after all.) ‘Mrs. Claus’ and a band of assorted elvish relatives had come to the door with candy. I was getting ready to go for a run, and Mary took Dale Jr. outside to see. The J-Man at first wanted nothing to do with all this, but then I saw him peek out the window and smile at Santa. I knew he wouldn’t walk out there on his own, so I carried him out to the truck to see.

He looked at Santa, then looked at me (In the eyes! Joint attention!) and said, “Santa Claus” and “Ho, ho, ho!” He would alternate between smiling ear to ear and flapping his arms, a clear sign he’s very happy. I even coaxed him into the back of the truck, and he sat sort of next to Santa on the tool box in the truck bed. Mrs. Claus said she’d arrange to get us copies of the pictures of this since we told her we hadn’t been able to get the J-Man to see Santa (the mall = the center of Hell for him).

What they perhaps saw as a simple act of Christmas family fun going door-to-door in our neighborhood really made our day. We only vaguely know them – they live down the street from us somewhere – and they have no knowledge of our kids or our family circumstances. They were simply practicing a not-so-random act of cheer and joy, and in doing so they gave us a wonderful gift. One thing autism has taught me is that goodness and kindness often come burbling up out of the ground when you least expect it.

After they left, I got a great five-mile run in under a crystal clear, star-filled sky in perfect temperatures. I was filled with visions of the J-Man’s face lighting up and his own voice telling me about Santa. (Dale Jr. is still at that age of being rather frightened of him.) I ran without effort. I even found myself laughing.

I’ve been missing my grandmother a lot – she loved Christmas and I loved spending it with her – but I always feel close to her running under the stars. I spent the evening decorating our little “Grandmothers Memorial Tree” on the mantle, listening to Sarah McLachlan, and eating from the mountain of goodies Mary made. I thought of all the Christmases of the years gone by and this wonderful day where people who were essentially strangers brought us joy, a joy our son can now give his own words to.

I understand more each year why my grandmother loved Christmas so much. It’s a time for expecting something magical to happen. It was on Christmas Day in 2004 we told her that we’d be having our first child, and I remember how overjoyed she was for us. I always felt safe, loved, and renewed at her house, especially at Christmas. Now we continue adding on to all these memories.

As time for bed on Christmas Eve approached, Mary read ‘Twas the Night Before Christmas. By the end of the second reading, Dale Jr. had fallen asleep in the living room floor under his blanket. The J-Man was sitting in my lap and drifting off himself.

This is our Christmas present this year, and what wonderful gifts they are.

To all of you – I hope that, however you celebrate them, these days bring kindness, joy, and lasting memories to you and your family.Similar Posts:

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The last couple of years I’ve done Three Words instead of New Year’s Resolutions. I’ve found this to be enormously useful, especially when compared to the incredibly low bar set by the complete lack of success we have ever had with our Resolutions. This is the time when I like to review the year and look ahead to the next. But I have very ambitious plans for 2012, and I’d like you to be a part of them.

To give you some idea what this has been about, in 2010, my words were: proclaim, connect, and bamboo. (See more explanation here.) It turned out 2010 was the year of The Great Burnout. The first half was pretty awful; the second half began a personal revolution. It was definitely a tale of two years.

In 2011, my words were: renew, simplify, finish. I feel like I hit 2 for 3 this year. ‘Renew’ was about continuing my work on my personal health and fitness that started after The Great Burnout in Summer 2010. I see this as having been a great success this year. By the time 2011 is over, I will have run close to 900 miles! I’ve maintained my 25-30 pound weight loss, I’m wearing clothes 2-4 sizes smaller than when I started. I feel much better. So, I win!

‘Finish’ has been a mixed bag, but I’m going to give myself the benefit of the doubt and call it a victory because I rocked some first-time, big-time goals this year. I finished my first marathon in March, a lifelong dream and Herculean project considering where I started just eight months before that (i.e., with my fat ass on the couch). I also participated in a collective writing challenge in November in which I wrote 50,394 words in 30 days. (Some of those appeared on this blog. Others will appear later. Even more others are for books I’m working on.) So on these two achievements alone, I’m calling it a success. And I’ve had other, smaller successes along the way. I had wanted to do more, but I’m giving myself credit for some things well done.

Simplify, on the other hand, was a pretty big failure. We had a lot of rough patches this year. The energy required to simplify our lives got swallowed up by health crises and lots of personal things. But this has turned out OK. I am ending this year with a much better idea of what is needed to complete my simplify goal. So, I am carrying that over to 2012.

I made some big changes in my life these past 18 months. I did it by focusing intently on a small number of ambitious goals, committing myself to working on them consistently, and taking things one step at a time. Now I’m really going to up the ante in 2012.

I haven’t decided on my official three words for 2012 yet – I still have two weeks! – but I know it will incorporate ‘simplify’ in with my other goals. I’m still working on how to express all this in the three-words paradigm, but regardless, I am saying that 2012 will be the year we get our crap together.

And I am inviting you to join me in that quest. A radical life change is something a lot of us desperately need.

If there is one barrier standing between us as parents of autistic kids and a sense of being successful at parenting and managing the rest of our lives well, it’s the chaos we experience every day and our present inability to cope with it. We don’t have enough time or money, we are incredibly stressed all the time, we are scalp-deep in fear, our health is terrible, our to-do lists are miles long, our homes are an absolute mess, and we simply don’t think we can survive all the demands on us. Many of us think it’s just not going to get any better. We are already going all out, we are exhausted, and we can’t give any more than we are right now.

The equation we usually operate within seemingly only allows us one variable we can control – the amount of effort we pour into our daily lives. But we hit that point where we either can’t put any more effort in or we reach the conclusion that no matter how much energy we expend, it won’t really make that much difference. And we’re pretty much right. So there’s really only one way to proceed. (Hint: giving up ain’t it.)

Throw the equation out entirely and start over with a whole new way of doing things.

It’s obvious we do have several constraints. Some of this chaos comes from things we cannot really control. However, a lot of it is within our grasp to do something about. The question is, how?

I don’t exactly know yet, but I am challenging the prevailing idea that a life of feeling overloaded and overwhelmed is just how it has to be for us as parents of special needs children.

I’m going to state something I now believe, and I’m going to state it without any proof whatsoever. As a matter of fact, pretty much all logic says it’s likely wrong.

I believe we can triumph over the chaos, be great parents to our kids, and live the kinds of lives that make a difference for our families, our communities, and our world.

And I want to prove this is possible. Like I said, I don’t yet know how to do this. As a matter of fact, I don’t yet know much about how to do it. But I’m going to find out. We’re going to discover the way to achieve this as we go along.

And I want as many of you who want to participate in this experiment to join me. I want us to show the world it can be done.

I’ll post more details about how I plan to set all this up in the very near future along with my initial ideas. One major component of this is that I’m going to blog it all out. I’m going to do this publicly and be held accountable to my goals and progress. I’m going to document what we do in our house and what others participating discover along the way so that at the end we’ll understand what worked and what didn’t so we can all do it year after year. We’re going to learn together and make real, lasting, positive changes in our lives.

This will be a community effort – no membership fees or anything like that. All you’ll need is the commitment to see it through. If you are interested to joining me in The Year of Getting Our Crap Together and making some big life changes next year, e-mail me at tim@bothhandsandaflashlight.com.

Hope everyone’s holidays are going well! More soon.Similar Posts:

• Three Words for 2012
• Goals for 2012
• What I’ve Learned So Far About Decrapifying Our Lives
• My Three Words for 2011
• A Journey of a Thousand Miles
• Why Do I Run?
• Lessons from the Road – One Year Later

In five minutes, you can make a difference in the lives of a lot of families.

Go to the A Diary of a Mom blog, read her post, and act. All you have to do is click and send a message to your Representative in Congress. It’s that simple, but it will make a huge impact.

Military families should have access to autism-related therapies as part of their health care. Imagine being deployed somewhere across the planet and worrying about your child getting the care they need. I get upset just being at the grocery store for an hour worrying about my kids. Now imagine being 10,000 miles away for a year or more. Imagine being moved from place to place every couple of years. I can’t imagine how hard all this is.

But you can do something about it. I’ve already contacted my Representative. It took me five minutes. Take five minutes and join us in this effort.Similar Posts:

• Sensory Processing Disorder and the DSM-V – Call to Action
• Sensory Processing Disorder and the DSM-V – Call to Action (Urgent Update!)
• Action Alert x 2! The Stimulus Package and Funding for Disabilities Services
• Action Alert! Stimulus Package and Disabilities Funding
• And Now We Will Hold You To It
• President Obama and Autism
• URGENT ACTION ALERT! Special Education and Disabilities Funding on the Chopping Block (Updated)

This is your story and mine. This is who we are.

You know fear. No, you know pure terror.

You have discovered unimaginable joys.

You feel everything. Intensely. Completely. There are days your soul catches fire. No emotion is beyond you.

You will always be parenting without a net.

But it can be done. It is being done. Every day.

We are doing it.

We are angry at an unjust world. We get furious that no one else seems to understand or care. We pound the dirt and fling it at the heavens hoping that there is some benevolence out there who will listen.

We balance our lives on the edges of knives. We can pull life itself out of meat grinder with our bare hands. We’d volunteer to have our arms ripped off if it would make our children’s lives better. We walk out into traffic to save them. We die a thousand deaths every time they fall apart. We fight back like caged animals. We are parents protecting our young.

We celebrate achievements large and small with complete abandon. We cry at a single, new word. We rejoice upon a smile. We turn into a puddle with a warm touch. We cheer with the voice of a thousand stadiums. We wear our pride everywhere.

We are fighters. We do not quit. We do not forget. We are relentless. We may end up on the ground, but we get up. Every. Damn. Time. We will not yield. We will not compromise. We will not surrender. Not ever.

Our faith may be shaken, but it will be reborn, however often we have to. Our strength will come from somewhere. It always does.

When we fall over and despair that we will never be able to stand again, we gather ourselves, we push against the ground with all our might, and we make it again to our feet. Getting knocked down isn’t the story. It’s the getting up somehow, no matter what, that matters most.

We believe. We believe in our children. We believe that their future is up to us. We are their champions. We proclaim the wonders of our amazing children, and one by one we convert the world. We speak for our beloved children who cannot yet speak for themselves. Whenever we crumble into silence, the very stones of the earth will cry out on our and their behalf until we can speak again.

I want nothing more than to tell you how this story ends, but I cannot. None of that is written yet. The pages ahead of us are blank. But I do know one thing. We have one hell of a story to tell.

Tell your story. Tell your child’s stories. Bear witness to all the beauty, pain, wonder, adversity, and possibility. Tell them what it’s like to savor each word your child learns to speak aloud. Tell them of every hard-fought step it took to get there. Tell them of the days you are scared mute and you don’t know how you will make it to another sunrise. Tell them what it feels like to rejoice when your child’s face bursts with light when they finally climb over their mountains of challenges and achieve the once impossible. Tell them about your child’s smile. Tell them of your pride.

Tell them everything. Speak of the wonders you have witnessed. Every. Last. One.Similar Posts:

• Letter to a Struggling Parent
• A Journey of a Thousand Miles
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• 1 in

“A journey of a thousand miles begins with a single step.” – Lao-Tzu

Today I achieved something momentous, and I almost missed it. I completed my 1,000th mile since I decided to start running again and taking control of my health in August 2010. I’ve run well over 800 of those miles in 2011, including a marathon in March. Just to give you some idea, a thousand miles is approximately the distance from New York City to Daytona Beach, Florida, and farther than the distance between New York City and St. Louis, Missouri. To which I thought to myself, Holy crap! I can’t believe I did that!

A thousand is certainly a nice round number, but in light of Lao-Tzu’s quote, it means something more to me. Today I completed a circle, and now I get to start a new one.

With over a year’s worth of perspective, I better comprehend what a deep mess I was in last year. You can read all about The Great Burnout, but the short of it is that I was physically and emotionally exhausted and in trouble. It was a real low point in my life. It was either do something or fall apart. I am obviously glad of the choice I made. Little did I know where it all would lead.

I remember very well that August day last year, a couple of days before our wedding anniversary as a matter of fact. I laced up a clunky pair of running shoes, strapped on my iPod, and headed out the door for Week 1, Day 1 of the Couch-to-5K program. It primarily involved a walking warm up, alternating 60 seconds of running with 90 seconds of walking for 20 minutes, a walking cool down, and beaching myself on the couch after the effort. I felt like I weighed every bit of the almost 235 pounds I was then. I plodded along slowly and completed the workout in one piece. It was a manageable effort, and I felt satisfied. I had started, and that, it turns out, was the first step on an amazing journey.

The workouts got much harder. All I wanted to do was complete the 5K autism run that October with a goal of finishing in under 30 minutes. My knees started killing me. I fell back into a despair. But I knew I couldn’t quit. Much more than a 5K was on the line. I was on the line. I told my body I was taking a few days off, but then it was on, regardless of the pain. I don’t normally recommend running in that much pain, but my situation called for desperate action. I pushed through it, completed my training, and eventually finished that 5K in 28:52, with a knee that looked rather like a large grapefruit. I didn’t care. I felt like I was coming back for good.

One thing led to another. My runs got longer. Then one day while on a long run, in a fit of pique, inspiration, or sheer insanity – or all of the above – I decided to set the biggest goal I’d ever thought about going after. I decided to complete a marathon three months from that day. This past March, eight-and-a-half months after I started running again, I crossed the finish line and completed my first marathon.

It is true what they say. The finish line of your first marathon is a transition line for your entire life. You cross over, and your life is never the same again. And it hasn’t been. It showed me that if you keep taking one step after another, anything is possible.

That’s what the J-Man first taught me. His life and growth are a series of steps – some small, some enormous leaps – each hard-won. No particular one may be all that glamourous or noteworthy all by itself, but when slowly but surely added together, they create magic. This is one of the wows of autism. And for me personally, I’ve discovered this is one of the wows of life itself.

I have tried to apply what our J-Man has taught me to my health and fitness, to my work, and to my life. It’s working. I think I get it now. I may be a slow learner, but I have an excellent teacher.

I feel more confident in adding new and harder running goals, working to get our lives in better order, and growing my work and hopefully my income, too. I feel like I have some idea what the heck I’m doing now. Our J-Man showed me the way to believe again.

There’s no magic plan here for you to follow. There’s no checklist to fill out and work through. It’s not quick or easy. You can’t make an infomercial out of it. You most likely won’t get results any time soon, but you will get them. You just decide what your heart wants most, and you go get it. You go outside your proverbial or literal front door, you take a step, then another, and you don’t quit until you get there. There will be setbacks and detours, you will often doubt whether you can do it, but if you keep your eyes on the goal and never quit, you will get there.

I made that journey of a thousand miles. It taught me enough lessons to fill a book. And now I get to begin another journey. Where it will take me next will be beyond anything I can yet imagine. I know it. So today I take that next, single step.

So go take your step. Don’t wait for anything. Right now. Go.Similar Posts:

• Diagnosis Day and a Tale of Two Marathons
• Lessons from the Road – One Year Later
• Today I Was Strong Enough
• Why Do I Run?
• My Three Words for 2011
• What I’ve Learned So Far About Decrapifying Our Lives
• Diagnosis Day

Speak your mind — even if your voice shakes. – Maggie Kuhn

Our J-Man is starting to string syllables together. Not many, but he’s doing it. He’s slowly but surely doing it without prompting. It rarely exceeds three or four halting words, but he’s doing it.

This feels like our version of the moon landing.

After so long doubting that he would ever really talk, as I was pulling into the driveway the other morning, for the first time something struck me. I started crying in the car. I believe it now. I really believe it. He’s going to talk, and he’s going to tell us about wonders we never imagined possible.

Even if he never did talk, would it change how dear he is to me, how much I love him, how much I will cheer for him, how much I will fight for him, how awesome he is and will be? Not one bit.

But I see how hard he works at trying to communicate verbally. I see him get so frustrated and upset at being unable to get his point across. I want to know how he feels, what he thinks about, how he sees the world. I want desperately to find some way to unlock his voice. I don’t care if that’s via his voice box, an iPad, or something else. But I feel him trying to show us how much he wants to figure out how to use his own voice. The more Dale Jr. talks, the more amazing things I realize he has to say. And I feel more like a failure as a parent that I haven’t found a way to help our J-Man do the same.

Recently he has been scripting some. He’s stringing together sounds, syllables, and approximations to repeat things he hears, often from kids’ shows he likes such as the “Here’s the Mail” song in Blue’s Clues and the intro song to Pinky Dinky Doo. These are motivators for him, and we are all about those especially since so little historically has been a strong motivator for him. They are familiar, they give him something to focus on, he can use them to practice sounds, and most of all, they make him happy.

I know we all have kids spanning the entire communication spectrum, so to be clear, he’s not suddenly uttering these crystal clear sentences. Some words are shortened – some to the point they sound like rapid, breathless speech. Some of his syllables vary greatly in length and use stresses you aren’t used to hearing. His inflections at the end of words may be all over the place, though they sound almost melodic. But you know, it doesn’t matter how he does it because there’s no one ‘right’ way. This is the purest music to us.

We were talking with his speech therapist recently, and we were all rejoicing that he’s started experimenting with these inflections and different intonations. He’s trying to close off words and say all the sounds in the word, not just the first syllable or two. He works so hard to get it all out, and now he’s staying with it longer and trying to finish the words he starts. He’s known for his clipped, monotone syllables when he does speak. He’s creating his own verse now with rhythm, tone, and meter all his own, and he continues to experiment and improvise.

What he’s doing now sounds like jazz. No, it is jazz.

He experiments with the notes. He is unbound by the stress and unstress of our so-called speaking. He is finding his own way. He is making it up and discovering it as he goes along. We can’t make his mouth, tongue, throat, and lungs make the sounds. He is the musician here. We can try everything we can think of, but so much of this is his journey of discovery. And he’s doing it.

His syllables sway and dance haltingly like middle schoolers at their first dance. He takes verbal steps slowly, carefully, daringly like a toddler, but he keeps at it, laying out one syllable after another. He lines them up like whirling dervishes, dreamy sloths, or slippery snakes, not going where he wants them to yet, but indeed they are going somewhere exciting.

And like a crossword, enough clues are now filling in that it seems bit by bit to be getting easier for him. Eventually there’s a tipping point where the momentum shifts in your favor. Maybe, just maybe, we’re finally there. Slowly but inexorably, it’s happening.

He sees everything around him, feels entire constellations of emotions, has wants and needs, has opinions and ideas, and has untold riches to share with the world. He may experience some or all of these things very differently than most of the rest of us, but that’s what so wonderful about it. What he sees and feels and thinks is unique in all the universe. I want him to be able to share that with whomever he wishes to.

And now these little rays of sunshine are poking through. It’s going to happen.

I see his face beam when he does get the words out. The light bursts forth from every pore in his face. I see his whole body rejoice when he is heard and understood. If there is anything that makes my heart sing more than seeing this in one of our children, I don’t know what it is.

And most of all I see it in his eyes. He now believes it, too. It’s going to happen.

I want this as much as anything. I want him to believe in himself. I want him to know that he can find a way to do whatever he seeks to do, no matter how long it takes. Forget however long it takes anybody else. I want him to know that doesn’t matter. This is his journey of exploration and discovery. He may have to take paths less travelled, or ones not travelled at all. He can blaze his own trail through sheer force of will. There’s magic out there to be found.

I remember all the days trying to get more than ‘kuh’ out of him (the sound that once meant anything and everything). It took months of work day in and day out to get just one new sound. I remember having no idea how he’d ever find ways to communicate and how we’d ever be able to help him tell us what he wants, needs, and thinks.

But slowly and surely over these years, it’s happened. One syllable at a time, he has pulled himself up this Super Everest. I’m still not sure how all this will turn out, but he’s made a believer out of me. He has that effect on everyone.

After so long, I believe it now. And we get to spend the rest of our lives discovering everything he has to say. How amazing is that?Similar Posts:

• One Syllable At a Time
• Many Ways to Say ‘I Love You’
• A Tale of Two Speeches
• Word-filled day! (No April Fools’!)
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• My Name is (WHAT?)
• “What if he never talks?”

I was asked by Help! S-O-S for Parents to be part of a team to review Pajaggle, a new game for ages 3 up. To access all reviews, please visit Pajaggle: A Blogger Review. My review follows below.

Their web site describes it as “Pajaggle™ (pa-jag-gul). The game that thinks it’s a puzzle.” And at one level, that’s essentially all it is. But really it’s a lot more than that, and I thought it was a blast. I was asked to consider particularly whether I thought Pajaggle was appropriate for autistic children. On that point, I’d say “it depends”, with some explanation below. But first, let me answer “What the heck is Pajaggle?” in my own words, especially since it will help me explain how I think it would work with autistic children.

Pajaggle has 61 pieces that you place into their respective slots on the Pajaggle board. That’s really it in a nutshell. But it’s deceptively challenging. Many of the pieces look similar to each other, and the variations between them can be very subtle. The spaces on the board for the pieces to slot into are an exact fit. And I really mean ‘exact’. In many cases, you’ll think you found the correct piece, but you didn’t. It’s not unusual to try to stick a piece into a slot, figure out it’s the wrong one, and then it gets stuck (or ‘Pajiggled’ in game lingo). Thankfully, they provide a separate doohickey that serves to pop pieces out of slots with little fuss (not surprisingly called a ‘Pajiggler’).

Here’s where they kick the complexity up another notch. Some of the pieces have slots within them for another piece to fit into. So some pieces just by themselves don’t actually fit into any slot on the board. They fit within another piece, which then fits into a particular space on the Pajaggle board. When I told my wife that as we were filling in the board together the first time, she said, “Oh, [expletive deleted]. Seriously?” We both laughed.

If you want to time yourself, Pajaggle comes with a digital timer. The first couple of times I solved the board, it took me forever. I was glad I didn’t time myself as I didn’t need that mark against me that day. But you know you’re going to use the timer eventually because you can’t resist, and it’s essential to the competitive, multiplayer games.

Admittedly the sample size of autistic children I considered in thinking about this review is pretty small, but I did talk with a couple of teachers along with some parents and we couldn’t think of any autistic kids we knew under age 7 who would be able or willing to sit and solve an entire Pajaggle board on their own or even with help. That said, if you gave them a partially filled in board and had them fill in the rest, that would be an option for some of them.

Our J-Man (who is 6, by the way), would mostly just stare at the board not really knowing what he’s supposed to do with it, or he might just line up or spin the pieces. We’d need to figure out how to structure it, which is hard to do with that many pieces.

So, its 61 pieces seem like too many for most younger kids. Perhaps if there were versions of the board with half that many pieces, and those pieces differed from each other a bit more than they do now, I think they’d be on to something for the younger kids.

If I could sum up in one sentence which kids I do think would respond well to Pajaggle, it’d be this. If your child enjoys puzzles and has a good attention span for them, has strong recognitions of shapes, can detect subtle differences between similar objects, and can do puzzles of two or three dozen pieces or more, then Pajaggle seems like an obvious choice to me.

This is one of those games that both parents and kids can enjoy, too. I thought it was a blast. If you dislike visual puzzles, then you might not care for Pajaggle, but otherwise I think most people would find it fun. It’s quick enough to do – somewhere between a few and somewhat more than a few minutes – versus spending hours or days working a jigsaw puzzle. Think of it like a quick brain pick-me-up if you play on your own. The possibilities for fast-paced multiplayer games are plentiful. Not surprisingly, we’re not party people, but I can see this being a great game for get togethers.

If you know of a child who likes puzzles (especially if their parents do too!), then I think Pajaggle would make a great gift. At $30, it might be a little spendy for some, but it’s fun and the variety of games and activities you can do with it to me make it a good value. You can purchase Pajaggle on their web site at http://www.pajaggle.com.

Disclosure: I received this game for free for purposes of this review. Similar Posts:

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To my friend and fellow wanderer in this wilderness,

I wanted to write you this letter because I know you’ve been clinging to the end of your rope, digging your fingernails into jagged holds until they break and bleed, desperate to not fall. I know you’re so damn tired you can hardly stand anymore. I can’t imagine how scared you are every time you leave the house wondering whether this is the time he gets away and never comes back.

I know the bills wash up like tsunami waves against your doors and sometimes all you have until you get another paycheck is the change lying around your house and what little room is left on your credit cards. I know what you once had but gave up because that’s what you knew had to be done to be the parent he needs you to be. I know the heartache and hurt seeps up out of the ground nearly every day threatening to drown you and all you love.

The fact that you are still here is a testament to your strength. You are relentless even when you are on the ground exhausted. The ragged marks where you clawed the ground, the tracks where your knees dragged, they proclaim the tenacity in your heart. When everything screams at you to quit, you don’t. Every time you thought you couldn’t take any more, you bore down and kept fighting. You are the lion protecting her young. You are kind and generous, sometimes to the point of giving away too much of yourself. Yet when the odds pile up against you, you know how to rip the f&$#ing heart out of life and stomp on it.

You inspire me. I wanted you to know that.

I know that doesn’t help you all eat or pay bills. I know nothing I have said or could say will change much. But I wanted you to know that you are enough, just like you are right now. And you will be enough for whatever lies ahead.

I know you likely don’t believe this, but we believe in you. You inspire many. Many of them – the ones who know the goodness and strength of your heart – would walk to the very edge of doom and beyond with you.

I am not saying all this to blow sunshine up your shorts. That’s not my way, nor is it yours. I can’t take any of this heartache and struggle away from you. I can’t say when or if it will ever stop. We can stand with you no matter what, but no one can stand in your place. This is your cross to bear and ours. There are many steps in this journey we each have to make on our own. For that I am sorry. I would fix it if I could.

I want with all my heart to tell you all of this will turn out OK. I wish I could tell you all this wandering in the wilderness will end someday and we’ll arrive in some land – promised or something else – where we can stop being afraid all the time. We know the only promise is the one we’ve made and strive to make again every day to our children, our families, and ourselves, and somehow this has to be enough.

I know you don’t believe this either, but you kick ass. That’s your gift. You have plenty of others, but every wonderful talent you have feeds off that. You’ve stared down hell and walked on. You’ve picked yourself up a thousand times. I know you will keep doing it as often as it takes. And every time you do, your generosity never wavers. On determination, guts, and compassion alone, you will make it.

I know you have to face all this while dragging the accumulated burdens of the years behind you. But know that you are a survivor. No matter how many times that challenges and circumstances have knocked you to the ground, you have been and will always be a survivor who stands, fights, and kicks butt.

Regardless of what it takes, you are enough. And we are forever your friends in the journey.Similar Posts:

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• Learning How Not to Say “I’m Sorry.”