January 2012

1 in

by Tim on January 30, 2012

I will risk pissing some people off here because I think this has to be said.

The National Autism Association posted a PSA about autism a while back. Watch it and then continue below for more discussion.

Let me start by saying that, while I am tired of a great many things, after seeing that 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.]

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Goals for 2012

by Tim on January 22, 2012

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

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The War for Our Children’s Services

by Tim on January 5, 2012

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.

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Three Words for 2012

by Tim on January 1, 2012

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!

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