Anger

Diagnosis Day and a Tale of Two Marathons

by Tim on March 19, 2011

Today is what we call Diagnosis Day, the day on which our J-Man was diagnosed with autism three years ago. We have in the past struggled with how one might observe Diagnosis Day or whether it’s necessary to really do so. In our “Diagnosis Day – 2nd Anniversary Edition” last year, we thought about it like the equivalent of renewing your wedding vows. Over time I’ve come to think of it as an opportunity to look back at how far we’ve come as a family in the past year, to give thanks for all those who have helped us, and to renew our commitment as parents and advocates to our children’s growth and to the rights of all children. But as we wrote about on that first Diagnosis Day, the vivid memories of that day always stay with you.

That day three years ago, I felt an entire range of emotions. I was angry, fired up, in despair, filled with resolve, weighed down with fear and every other emotion you could imagine, but most of all overflowing with love for my beloved son. The diagnosis brought a sense not of finality, as no future is ever completely written, but more that we were in this for the long haul now.

These therapies we’d been doing for much of his life weren’t a temporary detour from some other existence. We wouldn’t be taking any exits off this road any time soon. And the best thing we could do was make our peace with that, grieve whatever we needed to, and prepare ourselves for the journey ahead and all the adventures it would bring. The image that came to my mind repeatedly was that now we were running a marathon, and we needed to learn how to run that kind of race from here on.

People often see marathons as a dour battle against suffering and pain. Running is regularly thought of as painful, hard, and even unnatural. Many who ponder just the concept of trying to complete a marathon do so in terms of survival. This is unfortunate as I’ve learned that distance running is so unlike this. It is as much about the journey as completing a distance. It is about learning to put one foot in front of the other and piecing those small steps together into a far grander whole.

Running a marathon seems ludicrous to most of us, but taking that one next step doesn’t. We can be so overwhelmed by the enormity of things in our lives that we can’t even see past that let alone know all the steps we have to take to get where we hope to go. But give us a single, next step, and often we can do that much. And that’s exactly how a marathon is run. I tend to think that I’m not running these seemingly crazy distances; I’m just putting steps together, one after another, over and over again until I get there. This is how our lives can work.

Divide a challenge into its smallest parts, and in doing so we discover a way to overcome it. It is about realizing that what we perceive as our limits really aren’t, that we are so much stronger and more capable than we think we are. It is about going after what is possible rather than focusing on what seems impossible. It is about believing that you can come to the start line, answer the call to go, and somehow achieve something you’ve never done before.

I used to think I would never do something like run a marathon. Eight months ago, I was struggling just to get up off the couch. But in working these five-and-a-half years with this remarkable boy, I’ve learned that so much is possible if you just take one small step at a time and believe that somehow it’ll all add up to something amazing. I see how far I’ve come since I got up off that couch and decided to make big changes in my life, and I am astonished. I have a long way to go, but that’s OK. I will always believe that I wouldn’t have known how to come this far without our J-Man’s example to guide me.

Now our not-so-little-anymore wunderkind Dale Jr. is showing us to see life from yet more perspectives. He seems amazed at so much of his world, regardless of whether it’s something great or small. He just looks so in love with the world. His exuberance infects me and energizes me. He is our adventurous child, rarely afraid of diving into something. He explores and experiments, he creatively figures things out, and he is undeterred by anything. He soaks it all in and misses nothing.

Our two sons are developing differently, but in doing so they offer us a far richer understanding of the world than we would ever have otherwise. If the J-Man first taught me the path to achieving something great in my life, perhaps Dale Jr’s adventurous and exuberant spirit has taught me how to just believe, dive in, and go for it.

This year, and honestly quite by accident, I’m doing something completely different for Diagnosis Day. The marathon I’m running tomorrow just happened to fall on March 20th. They didn’t schedule it just for my benefit, of course, and besides I didn’t even connect the two until about a week ago. I don’t know why I didn’t before then. I had a whole set of reasons to take on this challenge, and the race falling on the same weekend as Diagnosis Day added the exclamation point on the end of the sentence.

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.

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Diagnosis Day – 2nd Anniversary Edition

by Tim on March 19, 2010

Today is Diagnosis Day. Two years later, I can still remember so much about that day. And I’m glad that I do.

We have wondered in the past how to observe the anniversary of the J-Man’s autism diagnosis. It doesn’t much feel like the occasion to invite friends over for a party, make a cake, open presents, and have everyone sing a couple of songs, particularly since he doesn’t much care for crowds, songs outside his comfort zone, or cake.

Last year, we pondered – in a somewhat analytical way – “How Does One Observe ‘Diagnosis Day’?” and looked upon it as a time to remember that turning point in our lives and to be mindful of who we are and the community of people like you with whom we share our experiences.

When Diagnosis Day actually came last year, all of the memories of that day came rushing back. The post I wrote last year I think was the first time I had ever written down the story of that day and the raw emotions I felt. Going back and reading it again was like getting back in touch with the visceral core of our journey.

I was back in the doctor’s office again sitting on that couch, his words distorted in my ears as if I were underwater. I was there watching the J-Man circle that room again and again while the doctor spoke to us. I was there again standing in our back yard angry and hurt and crying. I was there again to feel my resolve harden like a great fist inside me. I was there again, rocking my beloved son in my arms saying over and over again that everything was going to be OK.

I’m glad I wrote our story down. I need to remember all of it.

I am surprised that I almost forgot about it this year. It snuck up on us so quickly. That in itself is perhaps symbolic of where we are these days. Autism is such a part of our every-minute lives that we can’t not observe it every day. What’s ultimately so much different about Diagnosis Day after you make it ways down the road?

Perhaps as much as remembering where it began, Diagnosis Day also should be the parenting equivalent of renewing your wedding vows.

I pledge to love you and be right there with you every step of our way together. No matter what comes, no matter what challenges we face, no matter how frustrated you get or how afraid or overwhelmed you become or how much or how little you say now or ever, I’ll do everything I can to see you through. And together we will discover what you love most and what you most love to do, and we will help you share every gift you have with the world.

I chose you. I chose Mama and your brother, and I have chosen perfectly each time. I chose you the day Mama and I formed you and forever before that. I chose to walk all of the days since I was born to find the path to you, to find you right where I’d hoped you’d be. I chose you the day you were born. I’ve chosen you every day since. And I will choose you every day for the rest of my life. You are our gift. You are the world’s gift. And there is not anything that could ever change that. I am so happy that you are you.

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Diagnosis Day

by Tim on March 19, 2009

One year ago, we spent that March 19th in shock and in tears, stunned and lost. I can picture every part of that small office and the way I kept gripping and releasing the arm rest of the faux leather couch. I can still see the doctor looking at us, eyes full of understanding, clipboard and notes in his lap. I still remember the calm and kindness in his voice, an even tone but direct and honest and spoken through a chorus of moanful sounds from the J-Man, though I remember few words other than ‘autism’.

My fingers still know how the fabric over Mary’s knee felt as I awkwardly patted her in an uncertain attempt to comfort both her and myself. She was bouncing him up and down trying to calm his overloaded, tired body as he whined, mentally and emotionally exhausted from the evaluation. I remember how I put my flat, left palm across his back – in those days big enough for me to span his entire back – pushing and rubbing in some gesture that lacked any clear purpose other than parental instinct.

I recall thinking, how many times has this doctor had to sit across from parents and tell them this same news? I don’t remember the exact first words out of my mouth after hearing the diagnosis, but I know the meaning behind my question – What do we do now? I wrote down everything he said as if my pen could save us, like maybe I could draw some road to a future we could no longer see.

I remember the plainness of the 70s-era office building and the trees hesitantly coming into bloom outside under a cloudy sky. I can re-feel the sting in my hand from banging my palm on the gear shifter in the car. I can see as much of the way home as the parking lot, but nothing about the drive itself. That road had disappeared too.

I wandered around for a while in our backyard, lost and angry and feeling sorry for myself, probably justifying my self-indulgence by saying over and over how unfair this was to him. I let dread and fear and despair and hopelessness crash through me like terrible waves. I could feel my arms flailing without purpose at everything and nothing, like a man desperately trying not to drown. I remember saying to myself that I was going to kick autism’s ass, not having any idea what that really meant; it was just the first thing that popped into my head.

Then at some point as the clouds yielded a little that afternoon, I could feel something -somewhere right under my sternum – harden like a fist. It didn’t feel like anger or hurt or some odd form of grace. I suppose it was pure, primal resolve. I remember the thought coming to me, He’s the same today as he was yesterday. He is our beloved son and we will do what it takes, even though I had no idea at all what that would mean either.

But on that day, that was enough for me. I went and held him and rocked him and kept saying, everything’s going to be OK, over and over again. It was a mantra at least as much for my benefit as for his, and I still say it often when it’s hard to find any other direction than down.

Things have changed a lot over this past year. My perspective has evolved and grown and in many ways been transformed. But I think I figured out what the point is of observing what I’ll call ‘Diagnosis Day’. We need to remember how we felt. All that hurt and sorrow and anger reminds us of where we started from and how far we’ve come. It helps us to see the same feelings in the eyes of other parents and know how to reach out and comfort them. This is what helps form the foundation of our compassion.

And then there’s remembering that on the morning after the diagnosis, the sun still came up and a new day began, as it has every day since. And he really was just as wonderful and beautiful and perfect as he was the day before, if not even more so, just as he continues to be every day. And the resolve at my core grows anew each day as grace slowly and continually seeps into each crack inside me, bringing with it the love and joy to fill and heal the places that were once raw with hurt and anger and grief.

This morning, I was frustrated and exhausted and stressed and frankly scared about all the challenges and changes that are to come. I’m slowly learning to be OK with this since it’s just part of who we are sometimes, but there are days like today where that’s not easy.

But as I look across the room at Mary smiling and rubbing her hand across her tummy over the new wonder growing inside her, and watching our son laugh and smile and spin and say with pride and conviction one of his newly-discovered words, they help me remember that everything really is going to be OK and that I truly am the luckiest man in the world.

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The 439 Stages of Grief

by Tim on January 6, 2009

[Note from me: This is another draft installment of that collection of essays and reflections that I hope to someday compile into a book. The first one I posted was "What if he never talks?", though I plan for other posts here to someday appear in that collection too. As always, comments are welcome.]

The 439 Stages of Grief

Pretty much every parent who has ‘gotten the diagnosis’ goes through grief, even if they expected to hear the word ‘autism’. We have in our minds from the moment our children are born ideas and images of how we see the story of their lives unfolding. Sitting in a chair and hearing that word used for the first time about our child wasn’t part of that.

Every parent’s story begins with imagining first smiles and first steps and first words. We saw ourselves playing catch with them in the yard. We watched them chase with the other kids in the neighborhood. We saw them going to their first day at school. We heard our cheers mixing with the other parents’ as our children ran down the sports fields after school.

They went to middle school; they started having crushes and eventually – God forbid – their first girlfriends or boyfriends. They kept growing into tweens and teens. They learned to drive and went to prom and graduated, in our dreams always with honors as the valedictorian.

They’d leave home, and already we felt sad even with that still two decades away. They went to a top college and earned their degree with distinction, of course. They went on for more school or got an important job and made a lot of money, striking out on their own in this great big world.

We hoped they would find someone perfect for them who loved them and whom they loved equally in return. If they so chose, we hoped they’d bring children – our grandchildren – into the world. And we watched the dreams and the stories continue with our next generation, as they have for millennia before us and as they will for all our days on this world.

Almost fundamental to being a parent is our desire for our children to be free of all barriers to their potential so that even the sky itself isn’t a limit. We want the fairy tale for them. When we heard the word ‘autism’, that sky, and the story, fell in a blinding flash of fire, leaving only a blank page set against an empty horizon.

But this isn’t how the story really ends; it’s how a new one begins. The blank page waits for us to choose how to write our true story. But those of us who got the diagnosis know that at the beginning you cannot conceive of a single word to write because you just watched the whole thing burn up in front of you. You’re still holding the ashes of everything you thought was going to happen.

This is grief, pure and simple. You will have to sit with these fistfuls of ashes and this book full of blank pages for as long as it takes to grieve. You will let everything fall to the ground and sit in these ashes and feel like the world may end. You will be angry at everything and nothing. You will look for people to blame; you will look for anything at all to blame; you will blame yourself. You will promise anything, do anything, bargain with anyone to find a way to get your child – and yourself – out of this. You will just sit motionless on the floor and cry yourself down into a bottomless lake.

And at some point, you will come to a place where you have to decide what you’re going to do. You will stare down endless, featureless paths and have to decide which to take without having any idea what’s down them. You can keep bargaining and railing against the world and giving yourself and your child completely over to the next person who says they can help without caring how crazy they might be. You can drive yourself mad with guilt.

Or you can willingly choose to turn yourself directly into the fury of the storm, grit your teeth, and take one, single, determined step forward. You can sweep your arm behind you, cradle your child behind your leg, and block the wind for this perfect little child you love more than anything in this world.

And this is the way it begins for all of us, with one, single, determined step.

[click to continue…]

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Gloom, Despair, and Agony On Me

by Mary on March 21, 2008

While I’m trying not to act like the above title (10 points if you know where it’s from. 20 if you sing it!), it’s a little glum around the ol’ Flashlight house these days. We’re still trying to work our way through the stages of grief everyone talks about – and I’m stuck in the anger/despair part.

Really, why does this have to be so hard? I, like all parents, want my child to have an easier life than I have had. I want him to have the good things from my life: to grow up loving to learn, go to college because it’s just what we do, find a wonderful partner like I have, and have beautiful children that I can spoil someday. It reminds me of that line from Steel Magnolias where Julia Roberts’s character says, “I want to sit on the front porch, covered in grandchildren, and say ‘No,’ and ‘Stop that.’” I want him to skip the bad things…

Instead, his life will be immeasurably harder than mine. He will have to work harder at EVERYTHING than I had to. Everything (ok, except peeing while standing up, which I still can’t do unless in the shower… it’s OK, I’m the one who cleans the bathroom).

This changes our lives for the long term. It changes our plans for ourselves (second baby? Moving to the mountains someday?) and our plans for him (doctor? Lawyer? POTUS!?).

Interestingly enough, it doesn’t change our lives for the short term. J-man will still have the same therapies he had before, since he was already in developmental, occupational, and speech therapies. He will still attend the special preschool. He will still pull us to the back door to go out and swing every day. He will still continue to delight us with his smiles and giggles and sense of mischief. He will still be the wonderful boy we know. He will not know the difference that 3 letters can make.

We will though.

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