Fear

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.

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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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Who We Are

by Tim on December 1, 2011

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.

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A Journey of a Thousand Miles

by Tim on November 29, 2011

“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.

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Letter to a Struggling Parent

by Tim on November 15, 2011

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.

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What Does ‘Strong’ Mean to You?

by Tim on October 14, 2011

I’m going to ask the question in the title of this post again at the end, but I want to first bring up a few things I’ve thought about concerning what ‘strong’ means in our lives as parents of autistic and special needs children.

I’ve had a lot of conversations with people about how difficult some episode or part of parenting has been on them physically, emotionally, spiritually, mentally, or typically some combination of these. Let’s not sugarcoat things. We face a lot of challenges. Some of them wear us down. Some days all we can do is hold our heads in our hands. We are determined to overcome these challenges, but it sure would help if we had greater reservoirs of strength to draw from.

I realized that being ‘strong’ means different things to different people. In our patriarchal culture, it’s often equated with physical strength or political or economic power. Many movies and televised sports only add to the glorification of this. I think if you ask a dozen random people in public, most, or maybe all, of their responses would fall within this definition of ‘strong’.

What’s intriguing to me is that if you ask a collection of parents of special needs children, my experience has been that you’ll get a much broader array of answers. We are very aware of our limitations in areas essential to our families’ needs and at some level our own survival. Our role models are often other parents who we think are living in ways we want to ourselves, leaders in the autism and special needs community, and people who have overcome great obstacles and challenges to succeed and thrive. I’m not saying that others don’t hold people like this in esteem, but we may be a lot more likely to have heroes like Temple Grandin than we would, for example, Peyton Manning.

We do need a certain physical strength to get us through the day particularly when it comes to managing a panicked, growing, amazingly strong child in public, chasing after one running from us in a crowded parking lot, or simply having the physical endurance for everything required of us during the day. At least these are some of the reasons why I’ve been running and working out for over a year now. It gets to the point quickly where this becomes an essential part of our job description.

But we are very aware of the fact that we need a variety of emotional and related community supports from people who know what we’re going through. Those are areas in which we’d certainly like to be stronger. Fear, anxiety, anger, and despair are but a few of all the difficult emotions we wrestle with. They are understandable and natural. But I know we’d all like to manage them better. Having these emotions isn’t the issue; being ruled and even incapacitated by them is where many of us struggle the most. When we lose our grip on this, which is often, we feel weak and undone.

We feel alone in this struggle, though in reality we’re not. In fact, it’s one trait almost all of us share. We can draw strength from knowing we’re not alone. We can draw strength from knowing others understand us. We can draw strength from each other’s wisdom. And we are strong when we band together in the face of injustices that harm our children and say, “Enough!”

Whether it’s another’s insight, empathy, or just their quiet, understanding presence, these gifts make us stronger. And largely these are quiet, unheralded acts of strength. So much of this never happens in public view, but it forms the foundation of so much of our building strength.

In addition, we appreciate the strengths of those professionals who support us. Our teachers, therapists, local and state service supports, advocates, and so many others possess amazing gifts and talents and a willingness to share those with our children. No one is making them do this. They chose their vocations because this is what they love. They use their abilities and wisdom to help our children, and if this isn’t an example of strong, I don’t know what is.

We also have an added perspective of ‘strong’ from our own kids. They have many strengths, whether it be prodigious talents in certain areas or their ability and determination to progress bit by bit and enjoy success despite all the challenges they face. They teach us that strength doesn’t magically appear out of nowhere or come after a few minutes of bombastic music a la Rocky Balboa. It comes instead from piecing together small, daily acts of practice. Over time, amazing things arise from these seemingly small things. Like grains of sand, they build up and can stand against a great ocean.

Perhaps our vision of ‘strong’ is simply having whatever it is we need in order to be the kind of parent and person we want to be, or otherwise having the means to get it. We might not know what this specifically means for us right now, but we know we need something. In that case, our best bet is to begin identifying where we are struggling most and looking for ways to address that. This could be anything from developing skills and strengths within ourselves to seeking out community resources to help us. We don’t have to know exactly everything we need right now. ‘Strong’ sometimes is just knowing we need help then seeking it out and taking some control of the situation step by step.

Why did this pop into my head? I put on the last line of my Road ID bracelet I wear while running the words “You are strong enough!” I was out running yesterday and thought about them. These were the words I swear I heard in my grandmother’s voice while I was out jogging last year and felt like quitting, giving up on running and a lot of other things, because everything felt too hard for me. I was overwhelmed by everything, and I didn’t feel up to trying anymore. When I was out on the road that night, knees throbbing with every step, wanting to stop, I heard those words. They’ve stuck with me ever since as one of my most important mantras.

They are an affirmation that I can face whatever doubts I have now and whatever challenges will come next. I don’t have to be the strongest person in the world. I don’t have to be superhuman. I just have to be me, and that is and will be enough.

I know she wanted me to believe in myself and not quit because that’s what she always tried to teach me. She overcame all manner of incredible adversity. She refused to let obstacles determine the course of her life. I’ve often felt adrift without her these last two years.

In his eulogy to Steve Jobs, Seth Godin said, “It’s one thing to miss someone, to feel a void when they’re gone. It’s another to do something with their legacy, to honor them through your actions.” This is what I’ve been striving to do. I think of her brand of strong as ‘Mamaw strong’. This for me means strength of character, conviction, faithfulness to family, relentless determination, and sometimes just plain old stubbornness.

What am I getting at with all this? Here’s where we come back to the title of this post. What does ‘strong’ mean to you? When you look at your life, challenges, children, families, shortcomings, hopes, and dreams, where do you need to grow and become stronger in order to realize your vision for your family and your life? Be as specific as you can. The more specific you can be, the better you can act on this.

If you want to post your thoughts here in the comments, I know I and others would love to hear your perspective. If you don’t, I encourage you to spend some time reflecting on this. It’s helped me, and I hope it does the same for you.

And always remember what my ever-wise grandmother said, “You are strong enough!”

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Our Last Trip to the Dentist – or That Thing I Haven’t Wanted to Talk About

October 10, 2011

There’s no nice way to say this. Our last trip to the dentist a couple months ago was traumatizing. I haven’t really wanted to talk much about it. It was that bad. Let me preface the rest of this by saying that it had nothing to do with the dentist or the staff. Unlike our [...]

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Talk to Me

September 1, 2011

You may have guessed this, but in case you didn’t know, Tim and I are introverts. We can handle being social in very small doses, with only a few people at a time – where we can do some serious talking – but then we need a good amount of time to recover! Big parties [...]

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