October 2012

I Am An Autism Parent - CoverA while back, I announced that I was releasing my first book, I Am An Autism Parent. Well, it’s finally here! I’ve spent much of the last year working on this book, and I’m happy to finally get to share it with you.

It’s available now on the I Am An Autism Parent web site or via the signup form at the bottom of this post. It’s free; all you have to do is sign up to get it. (For those of you with quick trigger fingers, if the site still says the book is coming soon, just ignore it.)

The obvious question is why spend that much of your life writing a book? My answer is pretty straightforward.

I’ve seen a lot of fear in the eyes of so many autism parents, including my own. I believe with all my heart that we are stronger than those fears and the challenges we each face, but I know convincing ourselves of that is another story.

We build our strength by claiming both our identity as autism parents and this journey we are on. I Am An Autism Parent is in many ways a statement of faith, the story of the parent I am trying to become.

To tell you the truth, I’m tired of all the negative language about autism. It would be dishonest to say that this journey isn’t challenging, but it’s also a pathway to discovering joy, beauty, wonder, and just how awesome your child is. I set out to write I Am An Autism Parent as a way of helping us all find renewal and open our eyes to all this possibility.

This book also is at one level an experiment. I’ve been searching for the last year for some way to respond to all the fear, shaky hope, exhaustion, and loneliness that is part of the lives of so many autism parents. Our children are certainly not at any fault here, and neither is autism itself. We struggle because often we are ill-equipped and ill-prepared for the challenges we face on this journey. We struggle because the stakes are infinitely high. These are our children after all.

When your child receives an autism diagnosis, we don’t get a manual. We make it up as we go along. We give it everything we have because this is about our beloved children. We don’t want to fail them, but we often feel like that’s exactly what we’re doing. We feel like we’re never able to do enough, like we’ll never be enough.

I wrote this book as a way of supporting and encouraging other autism parents and to help you discover the strength that already lives within you. We don’t need to sugarcoat our lives, but we simply can’t survive drowning in all the negativity we easily find around us. We have to be honest about the challenges, but we can become stronger than the challenges are hard, and we can be open to all the possibilities our futures have in store for us.

So, why am I giving I Am An Autism Parent away? Three main reasons:

  • I believe in what I’ve written. If the feedback I’ve received so far is any indication, this book will make a difference to autism parents. Because of that, I want as many parents as possible to have access to it.
  • I focused much of my work on parents whose children have recently received a diagnosis. I know how terrified I was then, and I want to reach out and support those parents. This is the best way I know to do that.
  • Like I said, this is an experiment. My foremost goal is to help other autism parents discover how to bring forth the best within themselves. This is how we’ll overcome the variety of challenges we each face and grow to be the kind of parent we want to be for our children.

Our mission as autism parents is to help our children grow into the fullest expressions of themselves. To do that, we need to bring the very best of who we are to this journey. If I Am An Autism Parent helps even a few parents achieve this, then I will be grateful for the opportunity I’ve had this year to write it.

As I said, I Am An Autism Parent is available as a free, downloadable PDF at http://www.IAmAnAutismParent.com or via the signup form below. You should be able to read it on a number of tablet devices and your computer. It’s probably a bit long to be printed out, but you are welcome to do so. And, of course, by all means share it with other parents!

I’d love your feedback on it. Just e-mail me at tim@iamanautismparent.com. I may not be able to respond, but I do read every message that comes in.

Thank you to everyone who has supported me on this project. You are each gifts to me. May the words in the book encourage others as you have done for me.

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I think I can handle most anything if I get some minimum, viable amount of sleep. I’m not sure what ‘minimum’ or ‘viable’ means in actual numbers, but I know it’s more than I’m getting now. Regardless, when you have a child who either regularly gets up early or gets up in the middle of the night and stays up, sleep is very hard to come by. Autism parenting and sleep are rarely friends.

So recently I once again found myself falling down into the hole of burnout. The accumulation of tiredness got bad. It wasn’t yet as bad as The Great Burnout, but it was getting there rapidly. We held on until we got a sleep-cation last week, courtesy of Mary’s parents. They kept the kids for about a week, and we mostly slept – a lot.

Even after a week of rest, we still felt tired. We got a few things done around the house, but not as much as we had hoped. But we did refuel the sleep tanks enough to hopefully last a while. We were certainly thankful to shut down for a few days.

At the end of the week, I was left with one of those simple, visceral statements of desperate faith.

There has to be a better way.

After our J-Man woke up a couple of nights ago at 3AM, it became abundantly clear that we can’t keep going through this cycle.

J’s sleep will – hopefully – settle down a bit once he gets acclimated to being at home again after his time away, but it’s not like rest is going to magically become part of our lives. We can try to schedule a more lengthy respite two or three times a year, but binge sleeping after a long period of deprivation really isn’t the most healthy approach.

I refuse to accept that we are doomed to this pattern, though. I really do believe there has to be a better way.

There is so much at stake. We have to find a way to become as strong and healthy as we can be in order to have the energy and focus we need to address some absolutely critical needs.

We all have the obvious personal concerns such as getting our children through the day, helping them grow and learn, managing therapies and medications, dealing with school, IEPs, and all those potential issues, fighting with our local, county, and state government agencies to get services, and so much more, on top of one or both parents needing to work in order to have a chance to make ends meet. Oh, and there’s that little thing about our own personal health and mental survival, too.

But there’s a whole lot more we want to do but often lack the energy for. Government entities are regularly trying to change the laws and rules, rarely in a way that helps our children. Policies change or become even more incomprehensible. Budgets get slashed. Our children are discriminated against in places both public and private. Many of us want to write, blog, and advocate. We want to raise awareness about our children’s challenges and make the world a better and more accessible place for them. We want to teach, learn, and grow as parents and adults.

In other words, we want to do more than just survive. We want to thrive, grow, and make the world a better place for our children and all children. We want to fight back against anyone who stands in our children’s way.

Here’s a blinding flash of the obvious. This is hard.

Here’s what I would like to become. I would like to become stronger than the challenges are hard.

We talk about autism being hard and all that, and there is some truth to this. Autism obviously does create a variety of challenges for those who are autistic and those of us who care about and for them. But when I say, “This is hard,” there is no blame to assign either to autism or autistic people here.

Autism has no will of its own. It simply is. And it’s certainly not my son’s fault that I feel challenged by so many things. I am the puzzled one, not him. And I think the sooner I completely claim that as my own issue, the better off I’ll be.

Beyond everything we want to do for our own children and families, most of us want something else, too. We want to create something that reaches beyond the four walls of our home. We want to leave our mark on the world, to leave a positive legacy that changes the world for the better and that will endure after we’re gone.

At least for me, this is where a part of me always feels more than a little empty. Maybe it is one of the hidden causes of burnout, at least for me. We want to do more than just get through the day. We dream of making a difference in the world, and when we can’t, we feel the loss of something essential in our lives.

But this is where I am trying to show grace to myself. Perhaps I’m not in a place to achieve the kinds of things I want to right now, but that doesn’t mean I will never be able to. With time and effort, I’ll learn and grow and hopefully get more of my crap together. The most important thing is to commit to the journey of getting there. And I hope you’ll do the same.

I know I’m getting better at this as time goes on. I am learning new things every day. I am getting wiser. I am figuring myself out. I am growing into my own skin. I am slowly but surely becoming the kind of parent I want to be. And I have two really good little teachers running around the house to help me.

I am often not the parent I want to be, and I am trying to accept this as just where I am right now. I am often not as present to my kids as I wish I was. I’m sometimes not a particularly good husband or friend, either. The dissonance between what I want to be as a parent and as a person and where I am now grates on me like an orchestra of out-of-tune instruments.

All I can do is learn from today and try to do a little better tomorrow. In the midst of everything going on, it’s hard to realize that this alone is quite significant. That commitment is absolutely essential, along with the belief that this – that I – will somehow be enough.

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In early September, on his birthday no less, our J-Man broke his right forearm – both bones. This is one of those injuries I’ve seen in my nightmares for years.

As if your child’s broken bones aren’t heart-rending enough for a parent, I honestly had no idea how we could keep a cast on him for several weeks or handle anything else for that matter. Like many autistic children, he’s already sensitive to even the most minute of deviations from his routine, and having his arm immobilized by some strange thing for several weeks, being unable to do a lot of his normal activities, and basically the life-altering changes that come with an injury like that were incomprehensible to me.

He broke it at one of those big, inflatable, bouncy houses while landing at the bottom of the slide. I was going down the slide with him, and some combination of him landing awkwardly and me running into him did it. And we were having such a good time up until then, too. He was as comfortable as I’ve even seen him there and was really enjoying himself. Let’s not even talk about all the parental guilt here.

We ended up at our local children’s emergency room. Between the ER and the urgent care we started at, I had to carry him and walk around with him in my arms for the best part of three hours. He refused to be put down, nor would he sit down with me except for a couple of minutes here and there. Usually when we tried, he went into a full panic.

How much of a panic? (Graphic description warning) He broke both his forearm bones so completely that his arm at one point was bent almost 90 degrees at the center of his forearm. I can’t imagine what kind of pain this is. But he was so panicked that he was trying to push away and fight people off with that broken arm. Not only could he have injured it worse, he could have done significant nerve damage. So, I carried him and his 55 pounds as long as was necessary.

I nearly fell apart when at least six of us were trying to hold him on a table in order to get an IV and sedation into him so they could set and splint his arm. The ER doctor, who may have been the kindest doctor I’ve ever met, kept talking to him softly as I hummed his comfort songs in his ear. She kept saying, “It’ll be over soon. It’ll be over soon,” to him. After a while, our minimally-verbal child who never asks questions screamed in agony, “When? When?”

My heart shattered all over that ER room floor. It still hurts and my eyes tear up even now as I write this. I started crying, draped across his chest, holding him down. I would have volunteered to have them saw my own arm off at that point if it would have stopped his pain. That same doctor started patting me on the back. The nurses worked as fast as they could. Finally, his little body went slack as the sedation took hold. I would have fallen to the floor if my muscles hadn’t all locked up.

As awful as all this sounds, and indeed was, I learned a couple of essential truths about us.

Our J-man is a lot stronger and more resilient than we give him credit for. After some pretty unhappy moments the day after, he settled into what would become his new routine without that much complaint. He never would wear a sleeve over his arm to keep it dry, so we gave him washcloth baths for 35 days. He couldn’t go out to the playground at school or outside at home, play in the dirt, water, or sensory table, or do some of the other things he typically does. He already ate left-handed and learned to switch most everything else to his left hand as best he could. We even noticed his handwriting is a little better left-handed! The main thing is that he adjusted, an amazing achievement all things considered.

We are stronger than we give ourselves credit for. I answered the question, How long can I carry a panicked, incredibly strong, 7-year-old, 55-pound child? As long as I had to. We had to make a lot of adjustments. September was very stressful. We were already close to burnout, and this obviously didn’t help. But we made it. We figured out what we had to.

I would like to say that we triumphantly made it through this ordeal, but it was, not surprisingly, more like limping and crawling to the finish line. We were thrilled when the cast came off and we could declare all this finally behind us. His skin has now mostly healed, and we’re moving on to the next thing.

But a victory here, as with many things, is in just getting through it. No one gives us style points or penalizes us if we don’t transcend our ordeal and become enlightened or whatever. We got him and ourselves through it. That is enough.

Remember that next time you are faced with a painful experience. Don’t undervalue the accomplishment of just getting to the other side of it. His arm is healed and within a couple more weeks he should be as good as new. In the end, it doesn’t matter if we fell off the balance beam a few hundred times and landed flat on our faces over and over again.

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