ASD

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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There Are No Shortcuts – Ideas For Making Better Therapy Decisions

by Tim on August 14, 2011

This is a post about how we can make good decisions about therapies for our children. But first, I need to set the scene a bit.

The details of your story and ours may vary, but the emotions from which most all parents make decisions about therapies are very similar. I believe you’ll make better choices about therapies for your child if you grasp where you are emotionally with all this. Once you do, you’ll be able to decide from a position of strength and know what warning signs to look for, a list of which I include later in this post.

Our earliest days in therapy with our J-Man – starting with feeding therapy around nine months old – had one consistent theme.

We figured that at some point it would end. He’d learn what he needed to learn, and we’d move on. Therapy was merely a detour in his childhood development. He’d figure out how to eat and overcome his sensory issues, and we’d get back on the road with life.

Almost everything at that point sounded so foreign to us, as it does to everyone when they first get on this road. If it didn’t seem invasive or completely hokey, we at least considered it. We got him the various array of standard therapies for issues with names I’d never heard of, which was admittedly about everything at that point.

You always start out in near total ignorance. We did plenty of research and learned that a surprising percentage of people – kids and adults alike, including Mary and me – struggle with feeding issues, sensory overload, motor planning challenges, and the like. For a while, it was all very interesting, like some research project. The various things we read said he’d likely either grow out of his sensory and eating issues or retain some level of them, but with therapy and some effort he’d be able to adjust well. Sounded OK to us.

But we sorta skipped over the parts that said that other issues may be going on along with the sensory challenges. He was a loving child who’d been late on a few milestones – OK, so a lot of milestones – but no big deal, we thought. He was just having a lot of sensitivities and difficulty figuring out the world. A lot of us do. In hindsight, it’s easy to see everything we missed – or that we refused to see – back then.

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The Many Flavors of Autism Awareness

by Tim on April 2, 2011

I don’t know why, but honestly I’m having a hard time getting fired up for World Autism Awareness Day. I suppose it’s that we’re aware of autism every day, and we often aren’t quite sure how to speak in coherent sentences one day a year to the large populace who has little to no frame of reference about our children and our families.

I know this day really isn’t about us so much as it is for the rest of the world who doesn’t walk this path each day. It is a wonderful opportunity to reach people who are more likely to be paying attention. I suppose sometimes our awareness-raising efforts the other 364 days of the year leave me a bit weary.

Last year, I wrote a three-part “Be Aware” series that pretty much listed everything I thought people should be aware of. There’s Be Aware – For Parents, Be Aware – For Family and Friends, and Be Aware – For Everyone. Hopefully you’ll find them worth taking a look at.

We try to give our friends and family glimpses into our lives throughout the year. We usually aren’t dramatic about it, at least we try not to be, but we do try to give a realistic depiction of our lives with all its ups and downs. We celebrate and complain. We advocate and we lament. We cycle through the range of emotions from joy to fear and frustration and celebration frequently, often many times a day.

We look for opportunities for awareness all during the year. We tell our story to others when the chance arises whether it’s to educators, therapists, and doctors, co-workers, various people we run into at some function or another, or just random passers-by. We mostly do that to share that yes it is challenging but also that yes there’s much joy in our journey, we’re fairly normal people, and we get to discover wonders others don’t. I got to wear my Celebrate Autism shirt at the marathon, which got several compliments. I suspect at least some people saw it and gave it some thought, or at least I hope they did. I’ll even bite someone’s head off if they are being mean to a child. Not all awareness raising is gentle after all.

One bit of awareness in my life that I need to improve comes from the fact that often we are so aware of our own lives that we don’t pause to think about other parents like us and the unique challenges they face. Every family has a different story, and there is much insight and comfort we can offer each other. Raising our own awareness of this gives us opportunities to learn, feel understood, and grow in our solidarity with each other. Lord knows we need each other.

But that said, we often lack awareness of how we treat our own selves like dirt. We abuse our bodies by eating junk and letting our physical selves waste away. I became painfully aware last summer that if I didn’t stop doing that, I was in deep trouble. We keep pushing all of the fires and urgent things in our lives ahead of taking at least some basic level of care of ourselves. Often that is necessary, but at some point your body is just going to stop letting you run up that debt against yourself.

Some awareness-raisings are months and years-long projects like state-by-state efforts to mandate that health insurers cover autism. Not only do we have to raise the level of awareness among legislators as to why this is so important, we have to dispel the myths that stand in the way, such as how mandating coverage will jack up premiums, that is unless one really thinks that an increase equivalent to a Snickers bar is somehow jacking up.

Locally, we’ve spent much of this year (one of the projects that occupied me for several weeks) raising awareness in our school system regarding why increasing Pre-K special ed class sizes without adding teachers was awful. If nothing else, we raised awareness that people shouldn’t mess with our kids’ futures, we have really long memories, and we will not give up. That said, I think our work did make a positive impact on our school system, and several people gained some much needed insights.

We’re particularly aware that budget cuts are causing devastating impacts on local and state disability services. We have heard that they do not expect there to be any slots for these services for our J-Man or the hundreds of other people on the wait list at least for the rest of this year and maybe not for the next three. The usual 2-5 year wait list for services may go up even more.

Sometimes we can just practice random acts of awareness. Like today, Dale Jr. and I went to Stride Rite to shop for shoes for him. The extremely nice woman who was so patient and kind to our J-Man when we took him there a while back was working today. Dale Jr. had a blast today trying on shoes, playing, and running amok in the store. The J-Man however had a full blown panic attack the entire time when he was last there. She didn’t blink. She just patiently and calmly got us all through it. You know we’re all aware when someone at a business treats you and your child with kindness and respect. Make those companies aware that you are thankful for them and those individual employees.

Other times we have to grind it out with the systems and bureaucracies of the world. Often we have no idea what difference our actions make. We plant seeds and hope for the best. But I think no well-intended step we take is ever pointless. Collectively everything we do accumulates, building on each other’s efforts until something wonderful happens. Maybe it’s quick; maybe it takes a generation or more. So much of that is out of our hands.

Maybe what we can do today and every day is simply ask, what one thing can I do today? Can I make a difference to another family? Can I teach someone about autism? Can I spread a positive message? Can I just randomly act in kindness toward a complete stranger? Can I kick down a door that’s blocking the way of progress? Can I share a word of thanks to someone who has helped us? Can I be a little kinder to myself? This applies whether you have an autistic child, you’re a family member, you work with children, or you just want to be a kind citizen of the world.

Ultimately, if we act in kindness with an intention to make a positive difference for our children, our families, our communities, and our world, I believe that whatever we can do will matter. We might not know how and we may get precious little evidence that it did, but I think we can trust that good things do somehow come.

Today, maybe if what we just say is, Let me tell you about my wonderful child and how I want to make a difference in the lives of all children, that has all the makings of a beautiful day. And that’s how we build a future.

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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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Two Be or Not Two Be?

by Tim on March 13, 2011

[This is a post written in two different eras of our lives. It's about the question we wrestled with for so long regarding whether to have a second child, which I thought of as "Two Be or Not Two Be?" The first part contains some thoughts I wrote in 2009 about three weeks before Dale Jr. was born. The second is reflections of where we are now.]

April 17, 2009

One of the most complicated and difficult decisions Mary and I have made together is whether and when to have a second child after our J-Man. We knew from before we got married that we wanted two kids. We understand ourselves well and accepted that our ability to provide the kind of attention we wanted to our children would drop exponentially after two, so that would definitely be our limit. It also felt like a nice, round number to us since, at least in theory, it meant that each of us could give one-on-one attention to our kids at any given time. Theory and practice often diverge someplace, but there is still value to us in the idea.

That sounds dynamite in theory until you add having a child with autism into the mix. It’s oddly common among parents I know that they have two children with their youngest child being autistic. It’s not much of a sample size for sure, and I’m not advancing any sort of theory here. For whatever reason, that just seems to be how it happens with parents around us. We have until now been the exception, and one that more people than just us have noticed.

One even more common trait that parents don’t really like to discuss is that for many of them their last child – no matter how many they have – is autistic. It’s not a dirty secret; it’s just something you quietly nod your head about and accept as an understandable decision. The time you invest in your children’s growth and well-being is immense. But it’s this particular issue that has piqued the curiosities of parents – with or without autistic kids – with regard to our decision to have another child after the J-Man.

Thankfully no one, at least to our faces, has questioned our judgment, though I imagine a few may have amongst themselves. But as with many things, we acknowledge the opinions of others and just move on with our lives. They had nothing to do with our decision.

I don’t recall us ever seriously considering not ever having a second child. There were a number of times we uttered, “I don’t know whether we can do this again” during the five-therapies-a-week periods. I know in deciding the timing of when to have a second child, there were plenty of days, weeks, and months where we quietly acknowledged that it wasn’t time yet.

Then there’s the thought no one is really proud of but every parent of an autistic child considering having another kid thinks about. Might as well be honest about it.

What if we have ‘another one’?

Obviously, parenting an autistic child is not some sort of disqualifier in having more kids. Plenty do. But you do have a huge decision to make with so many variables that it becomes an almost unsolvable equation. Studies are indicating that if you have an autistic child, you have somewhere between a 1-in-10 and 1-in-20 chance of having another. How do you feel about this? Will you be able to keep the level of attention going that your autistic child needs? Are you concerned about your ability to devote enough attention to each of your children? Can you afford care for each of your children? How will our child react to a new baby in the house? The list of questions can go on and on. You can paralyze yourself with them. And there are no clear answers. And I hate to disappoint you, but there never will be.

For us, I think it became a statement of faith in our relationship. Little did we realize how almost prophetic our wedding vows would become.

We shall keep together what share of trouble and sorrow our lives may lay upon us, and we shall hold together our store of goodness and plenty and love. When our way becomes difficult, I promise to stand by you and uplift you, so that through our union we can accomplish more than we could alone. I promise to honor and care for you, to speak the truth to you in love, and to cherish and encourage your own fulfillment through all the changes of our lives. I will stand beside you in joy or in sorrow, in ease and in conflict, putting the commitment we make today above any obstacle that we may face. This is my solemn vow.

We declared that day that we believe we can meet any challenge, and we realize now that our belief in that is stronger still. We have become pretty good parents when faced with a huge challenge. We’ve overcome and even thrived because we’ve discovered the frequent joy in these challenges. Most importantly, we’ve discovered that our J-Man is perfect the way he is and so full of love that it amazes us that his little body can hold it all in. And we believe our love for him can transcend those challenges and help us regardless of what comes next.

We did decide to have an amnio this time around. I was a little hesitant about this because while I know the risk to the baby in an amnio is very low, I’m not one who fully appreciates those kinds of statistical nuances. It was quick and fairly easy and we had the preliminary results in a couple of days – negative for all the quick and obvious stuff. We received the full report a few days after that, negative for everything they can test for. I must say that I liked having the amnio done more than I liked the idea of doing it beforehand.

We know there’s no test for autism, nor are there tests for a host of other health issues that might be part of his life. Life has few guarantees, and waiting on them will just do you in. It is nice to know certain things, however, even though nothing the report could have said would have affected us having the baby. Our rationale was that if something came back positive, we’d have time to prepare. Given how most of our lives are shaped by autism and the J-Man’s many needs, if the arc of our lives was going to have to bend toward another direction, we needed to know.

I am certainly not saying everyone in this situation should decide to have another child. This is simply how we arrived at our decision. We are nervous and excited, but most of all, we are deep-down at peace with our decision and can’t wait until we get to welcome our new little wonder into the world.

March 13, 2011

Dale Jr. is almost two now, and we have long since passed the point where we remember much about life without him. So much of what we worried about then seems like a distant memory now.

We got off to a sometimes rocky start, and our J-Man did regress pretty significantly for most of a semester at school. But we were determined to get us all out the other side, and we did that with the support of so many wonderful people. That’s as much a testament to the J-Man’s courage and determination as anything.

Is life with two challenging? You bet, but whoever said ‘challenging’ is by default a negative we should all avoid may not understand the concept very well. Great challenges often produce even greater joys.

Dale Jr. is pretty easy-going, has a wonderful sense of humor, is kind and loving, and is adored by everyone who meets him – just like they should! Many days feel like we have to relearn parenting, but that’s to be expected. Both our kids grow and change quickly. Every day brings a new discovery.

Life is often far more chaotic than I would prefer, but that’s largely about me and my still developing skills at coping with unpredictability and time management (such as that ever can be managed). But we’ve learned that we can fly pretty well by the seat of our pants and figure out much of what we need as we go. It calls forth the best of who we are and can be, and that is a wonderful thing.

We made the right decision for us at the time in which it was right for us. It’s important to keep both those things in mind as you think about having more children. This is true whether your children have autism, something else, or are considered ‘typically-developing’. I believe we do have a responsibility to our children to make decisions that are right for them. I definitely don’t think it should matter one bit to you what we’re doing or what anyone else decided to do. You have to look at your own relationship to each other as spouses and to your children as parents, your children and where they are in their lives, and the time and circumstances of life you are in right now, and then make the best decision you can based on that.

This is likely not the straight answer you were hoping for, but there’s never going to be an easy answer. If I have any guidance from there it’s to say, acknowledge those feelings of discouragement, uncertainty, overwhelm, and fear and patiently look for those more quiet moments where reflection is possible. I know in our chaotic lives that those can be very rare, but even a few seconds here and there can be enough. In time, you can gather up enough of these bits and pieces of reflections out of which the insight you’re looking for will arise.

Trust that you will make the right decision for your family, and I believe that will put you in a frame of mind where you will.

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Routines, Predictability, and Just Getting to School in the First Place

by Tim on February 14, 2011

[Thanks to Danette Schott at Help! S-O-S for Parents for including this as part of her February "Best of the Best" feature on school issues as they relate to invisible special needs! Go read all the great posts she's collected this month from some top notch bloggers, and while you're there check out the previous editions of "Best of the Best".]

Getting to and from school has often been quite the adventure for us over the last three years. We’ve enjoyed mornings that are smooth as still water, and we’ve survived mornings that have involved broken objects, personal injuries, shot nerves, and crying from adult and child alike.

The uninformed masses have been known to ask what a ‘normal’ morning looks like for us. After I pick myself up off the floor from laughter, I might offer the response, “Normal is a dryer setting, and ours still leaves the clothes damp. But I can tell you what gets us out of the house in one piece more often than not though.”

Children like ours often find comfort and stability in routines, so try to keep things as predictable as you can in the mornings. Don’t overdo it, though, as you want your child to continue learning and practicing adaptability. However, always start from a place of trying to be understanding of their needs. What may seem trivial and annoying to us may mean the world to them. Consider all sides of the equation as you develop and adapt your routine.

If you currently don’t have much of a regular morning routine but you think this is even remotely possible for your family, work on developing one. (If y’all have newborn triplets, for example, you may be on your own.) Just remember that even a change from chaos is still change for our kids, so whatever you do, introduce a schedule at a pace that moves your family toward your goal without pushing too hard. It’ll be challenging enough at first, and your kids might react strongly, but stick with it. In the end, it’ll get better, and you’ll be glad you did it.
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I Still Have a Dream for Autism

January 17, 2011

This is a repost of something I wrote for Martin Luther King Day last year. I hope you find it meaningful. I humbly ask Dr. King’s forgiveness for borrowing from his eloquence and for the meager quality of my own words as I draw from his gift to us, one of the most transcendent speeches [...]

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Let Me Out of Here!

January 5, 2011

Yesterday we took the J-man over to do the last part of a research study we’ve been participating in. This was the big part – the in-person evaluation. Sometimes the J-man does OK with formal evaluations, but usually they can be kind of a mess. I think part of the reason is the transitions – [...]

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