March 2012

The CDC has released its updated statistics for number of children diagnosed with autism, revising them to 1 in 88 (up from 1 in 110), with 1 in 54 boys being diagnosed. There will be the usual firestorm of reactions to this from all sides. So let me suggest that everyone just take a deep breath.

I wrote some reflections on autism statistics and what they mean to me in a post a couple of months ago called “1 in”. It’s about remembering what and, most importantly, who we are fighting for.

My reaction to the CDC’s report is probably an uncommon one. I think there’s quite a bit of good news in it.

* More kids who need to be diagnosed are getting diagnosed and are now on the path toward getting the services they need.

* All of our awareness-raising efforts are working. As awareness increases, so does everyone’s understanding of what the characteristics of autism are and what they can do to help children meet those challenges. As a result, more parents and family members are armed with the information they need to ask for evaluations and get the diagnosis their child may need. Medical professionals know much more now about what to look for. I believe we can take these new data as a sign that our efforts are working.

* African-American and Hispanic children have seen the most significant diagnosis rate increases. This is also a good thing. These are – not shockingly – populations who traditionally have not had anywhere near adequate access to medical, diagnostic, and therapy-related services. I take this increase in diagnoses here to mean that African-Americans and Hispanics are seeing improvements in getting this critical access to help. Obviously, we have a *long* way to go in improving this access, however. Way too many kids still are falling through the gaps.

* These data (hopefully) will help us get more funding for services, at least in the future, by showing the vast and increasing scope of need out there. I’m not naive. This will take a while, but these data will help.

There are, however, a lot of things these data do not tell us. One essential concept to keep in mind here is that these statistics reflect the number of kids *diagnosed* with autism. They may have been previously undiagnosed but still had autism. These may reflect actual increases in the total number of autistic children. No one knows for sure.

But are these new diagnosis rates solely the result of improved diagnostic tools, greater awareness, better access to professionals, etc.? The simple truth is we don’t know. I think it’s clear that a significant number of these ‘new’ diagnoses are the result of this, but all? Again, no one knows.

I freely admit that I can’t remotely define what ‘significant number’ really means. It’s just my sense that the systems in place are indeed doing a better job in making sure more and more kids who need services are being identified and served. As that continues to improve, I imagine these numbers will change again.

For me, the actual bad news here is that more families will be fighting for the same vastly-underfunded pie of services. Our own family is already losing critical supports from our county at the end of June because of budget cuts. It’ll get worse for all of us before it even thinks about getting better. Our mission now is to take these statistics and arm ourselves for the next battles to come.

You’re going to see endless new theories about what has brought about these new data and strong defenses of many of the arguments we’ve heard over and over again. Everyone will have a theory, including me obviously. Let’s make sure of one thing, though. Let’s not be a-holes to each other as we struggle with these numbers.

We’re all working toward one common purpose – making sure our kids, adults, and families get the services and supports they need. Don’t lose sight of this. We have a LOT of work to do. Let’s get back to it.

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Sherpa

by Mary on March 23, 2012

Sherpa: a member of a people of Tibetan stock living in the Nepalese Himalayas, who often server as porters on mountain-climbing expeditions.

When Tim runs a marathon, I am there as a “support person” – only I call myself a “Sherpa” instead. Last year, Tim would go for his long runs on the weekends, because I was available to take care of the kids. Those long runs would take about 6 hours, because of having to drive to and from a trailhead. Last year I took care of the kids during the evenings when he went on shorter runs, only lasting a couple of hours, but those couple of hours were during “the witching hours” and I was already pretty tired from work. Last year, I lugged 2 backpacks to the Start line at 0-dark-thirty, only to realize that he wouldn’t actually NEED anything in the backpacks until later in the race. I drove to different points in the race, where I could hand him Gatorade or gels or just give him a kiss and encouragement. I am incredibly directionally challenged, and it takes me forever to read a map, but I did it. I met him at the Finish line, helped him to the car, got him food and drink, helped him back up from the ground, and drove us home. I made a lot of sacrifices so he could do something he had always dreamed of doing.

This year, because we had childcare for Dale Jr, Tim did his long runs during the week. Heck, he did his 2-3 hour runs during the week. It completely changed the way I felt about his training. (Well, not completely. It still kind of sucks when he’s gone for a long time…) When we went to the race, I carried a camera to the Start line. I still met him at different points during the race (more points this time), and the maps and directions he carefully printed out and labeled for me were not helpful, because the race people closed off different roads than they did last year. I still made it to the meet-up-points, but there was a lot of driving around my ass to get to my elbow to get there. I really can’t explain how stressful that is for me. I met him at the Finish line, walked with him to get food and drink, and drove us home. (See, he did better this year – he was able to get his own food and drink, walk by himself, speak in complete sentences, and he didn’t lie down in the parking lot!)

Nobody except Tim, and other support people, has ever had anything to say about what I did. It was expected. I was a Sherpa. Sherpas don’t get the glory when those guys climb Everest, but oh my god how important they are. The famous guys could never have made the journey without the Sherpas. The Sherpas carry the loads of equipment, break the path, do all the scut work, without the glory.

I feel like I’m a Sherpa in real life. I do so much in the background, so much that other people don’t see, but because Tim is the “at home parent” and because he does drop-off and pick-up and takes care of most of the paperwork (OMG at the paperwork), he gets the credit. It doesn’t hurt that he stands out being one of the only dads doing those things. It’s just that I do the cooking, laundry, most of the cleaning, grocery list and shopping, childcare every evening while cooking dinner; you know, the daily slog that people expect the “at home parent” does. I also work full time. Without me, there would be no dinner, no clean and folded clothes, no clean bathrooms, umm no mortgage… And it’s expected. It’s my job. I’m the Sherpa. I don’t even feel like I’m a good Sherpa, because our house is a wreck.

Every once in awhile, I’d like to be the Mountain Climber; the one with the Finisher’s Medal; the one who actually fulfilled her own big dream. Except, I don’t have big dreams anymore. I have small dreams, like sleeping for 8 whole hours. Like living like I did before I had my colon removed and didn’t have to be near a damn bathroom every hour. Like losing the gazillion pounds I’ve regained since my surgery, since I can’t eat the way I did before. I started running (and I suuuuuck at it) and it just feels like one more way I’m failing now. I doubt this is something that Autism parents alone feel, but I feel like we have fewer breaks. A date with my husband where we aren’t rushing to be back by 8 to put the J-man to bed because he will freak out otherwise? It doesn’t happen. Being able to call a regular baby-sitter and do something spur-of-the-moment? It doesn’t happen. Going out in public as a family without the constant dread that we will have to (literally) pick up and run? It doesn’t happen. I need a dream. I need a break.

Instead, today begins 3 weeks of track-out from school. I, like every other parent, dread track-out. I hate the lack of structure; I hate waiting to see WHEN (not if) the J-man will absolutely lose it; I hate the person I become from frustration and sheer exhaustion. Tim and I joke about needing a “sister wife” especially during track-out. Maybe we’ll start using the term “Sherpa” for that instead.

Today, take time out to thank your Sherpa. And if you ARE the Sherpa, I would like to say a heartfelt THANK YOU to you as well.

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It’s not uncommon for people to look at me like I’m a bit unstable when I tell them I’m running another marathon. It’s quite likely I am a bit unstable but probably for other reasons. It has been tiring to say the least trying to manage all the training for this weekend’s marathon and the everyday demands of family, home, and work. Obviously from my lack of posting here you can see that available time is almost nonexistent. So why do another marathon?

A couple of days from now, we’ll observe our fourth Diagnosis Day, the day on which we received our J-Man’s autism diagnosis. This has, not surprisingly, been a day filled with a variety of emotions over the years.

And not coincidentally, this Sunday is my second marathon. Why? My reflections in “Diagnosis Day and a Tale of Two Marathons” last year still sum it up nicely. These are some of the words I wrote on Diagnosis Day last year, the day before my first marathon.

So tomorrow I will celebrate everything I’ve learned from my kids and from my life. I will proclaim that even with all these challenges we face and all the effort they require, I am stronger than ever for it. I have come back from a difficult place in my life. When some people assume that parents of special needs children are doomed to an existence of unending struggle and despair, maybe now I can show them it is possible to be that parent and do some pretty kick-ass stuff. And tomorrow I’ll think a lot about my grandmother because I think that’s the kind of attitude she would appreciate and want me to follow in life.

Four or five hours after this weekend’s marathon begins, it will end. The marathon of our lives will continue on. But now I know how to run marathons. I know how to train for them. I know how to get up off the ground on the most difficult days and keep putting one step in front of another until my feet are solid under me again. And I know all this and more because of these courageous, adventurous, determined little boys who taught me to believe that what seems impossible never is.

But why do it again? Didn’t I prove my point by doing it once? I’ve had plenty of hours on the open road these past months to ponder that question. And this is the best conclusion I’ve come up with.

Perhaps one of the best lessons we can teach ourselves as parents is to pursue and value whatever consistency we can muster over the long haul. It’s not ever going to be enough for us to do something once. We have to wake up every day and be as ready as we can be for the challenges that lie before us. There is never going to be any one-and-done for us. This has turned into my way of training for real life more than any marathon.

At its most basic level, I simply love to run and am enjoying its many health benefits. It’s made me a better and healthier parent. Beyond that, running a marathon has become in no small part an act of defiance, that I won’t let the challenges that often pile up around us to keep me down. I’ve learned that I can overcome a great challenge, then do it again, and keep on doing it as often as I choose to if I am determined enough.

As wonderful as I make it sound, there’s really nothing glamourous or mystical about doing it, though. I show up and do my training. I log my miles in the same way that I try to show up and do my work, attend to the needs of my family, and meet the various other responsibilities in my life. I don’t necessarily do any of this well – far, far, far from it – but I do try my best, and most of all, I show up. I truly think that showing up is 80% of just about everything.

Not surprisingly, running a marathon is hard. It’s the hardest physical thing I’ve ever done. I started hallucinating in the final miles last year. I couldn’t feel my feet toward the end. I turned into a brain with legs running on instinct. It’s reminded me of a lot of days here at home trying to figure out what we’re doing and find a way to overcome the mounting challenges we face. Many days it’s so hard you just go on instinct.

But when I crossed that finish line last year, my life changed forever.

To paraphrase the marathon saying: At mile 23, I thought I was going to die. At mile 26.2, I discovered that I was too tough to kill.

I discovered that I could do it. That discovery has meant more to me than I can express. I finished in the slowest 20% of runners that day, and it didn’t matter. When I thought about that, an affirmation came to mind.

I am not fast, but I can endure.

That has come to mean a lot to me as an autism parent. I’m not Super Dad, but that isn’t the point. I do my best each day – which some days amounts to little more than breathing and getting my pants on – and I keep moving forward with every ounce of strength I have. When we put one foot in front of the other, we can and will get there.

We are all marathoners, and we can do it.

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