2012

Will Bring Us Goodness and Light

by Tim on December 11, 2012

This past weekend, we went with friends and families from school to see a Christmas lights tour at a local farm. The owners had converted the dirt roads around their farm into a holiday hayride trail decorated with Christmas displays, and they take visitors on a 30-minute, slow, peaceful ride through the woods on a flatbed trailer.

The owners thoughtfully let us come about a half-hour early to avoid the lines. An unusually pleasant December breeze blew in and around us as we waited for the ride to start. They also turned down the loud holiday music for our trailer full of sensory-anxious riders. The J-Man was distressed before we started to move. He didn’t want to sit down. Then we pulled away from the barn, and the motion and vibration instantly calmed him.

It’s dark out there in the country, which made the light displays that much more vibrant. Dale Jr. was beside himself with glee as each set of lights burst into every Christmas shape, figure, and character you could imagine. The J-Man sat there, body still and close to my arm, eyes looking around, taking it all in. The two of them sat between Mary and me, the four of us soaking in this holiday moment together.

Dale Jr. narrated each amazing thing he saw, which was everything. Each new moment was a revelation to him. I felt the J-Man’s body relax into the right side of mine. His passive, inscrutable face began to brighten. That twinkle we know and love as much as life itself appeared in his eyes. His mouth went from grin to smile, that perfect smile that makes him look like Mary’s little twin.

We rode on through the night surrounded by thousands of lights, our children’s faces filled each with their own unique wonder. Mary and I met each other’s eyes and knew without ever saying a word. That moment was pure magic, a moment you wait and hope for. The four of us together awash in the joy and peace that truly represent what the holidays are all about.

We are surrounded by friends – children and families from the autism program at our school. Everybody has their own needs and challenges, but there we were together, out in the wilderness, literally encircled by light. And I think, there is no more perfect symbol for our lives than this.

I thought about how challenging public outings have been for us over the years, sometimes completely impossible. Going out as a family has been painfully hard at times with two kids with very different personalities and needs. I thought about how much we’ve practiced all the skills and strategies. To the unknowing observer, we looked like any other family enjoying the lights and each other. Deep down we knew that this Christmas gift was years in the making, coming through faithfully working and waiting, attending to what is important, and believing in all the goodness that comes into our world just because of who we are together.

Family pic with santa 2012 sm The hayride ended, we got off, and we went in search of Santa. We hadn’t had a successful, formal Santa picture in years. We honestly stopped trying. We’ve seen no need to stress our J-Man out at our mall over a picture. But a very understanding Santa was there in a large sleigh (no crowding or needing to be too close). J-Man cautiously climbed in at Santa’s right, Dale Jr. nervously to his left and completely in awe of the mythical figure. Mary and I stood on either side of the sleigh, and the photographer snapped our picture. This would be our first family portrait in over two years.

While we waited on the photo to print, we all sat outside together at a picnic table next to a roaring fire. For a minute, no one made a sound, not even the normally chatty Dale Jr. We just stared into the fire as its light danced and flickered up to the heavens.

Before we left, the J-Man and I walked over to a light display.

“Did you like the lights?”

Grinning he says affirmatively, “Yites!”

I see a sign, point to it, and say, “Do you know what that says?”

“Meh-errrrr-eeee-kiss-mas!”

And so much more. One we will always remember, this time of peace and joy and light.

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[This is a section from my book, I Am An Autism Parent, that I wanted to share with you here. You can download it for free by signing up at the bottom of this post or by going to the I Am An Autism Parent web site and signing up there. Thanks!]

“Dum spiro, spero.– While I breathe, I hope.” – Cicero

I have been asked numerous times by parents just receiving a diagnosis for their child whether there is hope, hope for something specific in their child’s future.

Is there hope she will grow with enough therapy and school to be considered no longer on the autism spectrum? Is there hope he will be in a classroom with his peers when he gets older? Will she be able to live on her own when she gets older? Will he go to college and someday have a job, get married, and have a family?

I Am An Autism Parent - CoverAll of these questions are so poignant. I remember well the frightened place they peek out from behind. It’s almost impossible when your child is this young to have any perspective on the future at all. At age 2 or 3 or at any time really, you don’t know what they’ll be doing a week from now let alone years down the road.

But you want to know. You desperately want to know. You want anyone to tell you it will be OK. You don’t care if they are lying to you. You want your child to have a bright future, but you can’t yet conceive of what that might look like with autism. So you despair.

To be honest, a part of us always remains there. Our questions about hope do change, our perspectives evolve about what hope is, but our commitment to helping our children grow into the fullest expressions of themselves never changes.

We are ingrained with all the traditional stories of growing from childhood to adulthood. There are endless stories about ‘normal’ childhood filled with all the typical things kids do. But there are hardly any stories about our kids, and that scares us. We feel like we’re flying blind into the unknown.

The stories we do hear about autism are all the dramatic ones in the news, features, and documentaries. After all, documentaries are only done about people who fall well outside what has been declared ‘the norm’. No one does a film about Saturday afternoon t-ball games or a trip to the store.

We live in a sort of ongoing documentary. We are real reality. No one has or can write the story that will come next.

But this is the hope we think we want. We want to know how this story is going to turn out. We want to know that our kids will get the happy ending. It’s what all parents want, it’s just that most parents are making their way through well-charted waters. We’re just making it up as we go along.

All that unknowing, absence of direction, worry, fear, and complete lack of predictability feels like the opposite of hope. We simply want to know that even if we have to bust our asses to get there, if we do the right things, it will all work out in the end.

But here’s the thing I learned that is now saving me a lot of grief and pain.

Hope isn’t a specific outcome. Hope lives in what is here with you right now.

When hope is no longer tied to a destination, it’s free to become a way of being. It doesn’t have to live in some future you can’t predict or control. It can live right here, right now. It can live in your home and in your family.

What has happened is done. What will happen is as yet unrevealed. Spending too much time and energy worrying about either will not get you anywhere. Trust me.

The future will take care of itself somehow. Who knows whether it’ll be the future you originally wanted or dreamed of. Well, I take that back. It won’t be. It never is, regardless of whether your child is autistic or not. But I have discovered that the future has turned out far deeper, richer, and more meaningful than I could have ever imagined possible.

Focus on loving your child, your pride in them, and what you can do today to help them overcome the challenges in front of them right now. Enjoy your child and how they grow and learn and experience the world.

Believe in your child. Believe in the right now. Believe in your family. Believe in the talented people working with your child. Believe in yourself.

This is where hope lives.

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Thankful for the Gift of Words

by Tim on November 20, 2012

Our J-Man has started typing. It is a marvel.

It’s like he’s engaging in the Herculean task of trying to figure out the entire English language on his iPad keyboard, one letter and word at a time. We try to help him spell new words, but he is nothing if not independent and stubborn. He wants to figure it out, so we give him some freedom to explore language as he sees fit.

For instance, I have watched him in recent days try to figure out the word ‘pillow’. His first attempt – at least to an outsider – would have appeared to be rather a mess. If he doesn’t know a word or isn’t sure of it, he tries to first spell things phonetically. Completely logical, of course, but by ‘phonetically’ I mean spelling it the way it sounds when he tries to say it, which when you are seven years old and have been diagnosed as minimally-verbal with the speech of a 2 1/2-year-old, then the spelling can get rather interesting.

His first attempt at ‘pillow’ on the iPad (aka, his ‘talker’) a few days ago was something like ‘pelero’ or ‘peleow’. Not bad, I thought, considering I’m not sure how many times he’s seen the word and the way in which he was trying to sound it out.

I took him to an actual pillow, typed ‘pillow’ on my iPod, and showed him the word. He considered it thoughtfully for a long moment, then pulled my head down onto the pillow next to his, which was all he wanted in the first place rather than a spelling lesson. However, it seemed to sink into his awareness somehow in as much as you can tell these things with him.

Yesterday, he wanted all four of us to snuggle together on the floor on pillows, one of his favorite sensory activities. So he pulled me over to his talker, and he typed ‘pollow’. My heart turned into a big puddle.

After so long pointing at pictures and trying to use word buttons on devices, this feels like a miracle. I can’t believe how far he has come in his communication this year. We live in marvelous times.

So I am thankful for peleros, peleows, pollows, and pillows. This world and this little boy’s heart and courage are big enough for all of them.

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My Post-Election Message to Autism Parents

by Tim on November 7, 2012

For our readers in the U.S., here’s the deal.

Either your candidate won, or your candidate lost. Either you are overjoyed in your celebration of victory or you are depressed in defeat, or you’re just tired of it all and you’re relieved it’s over.

This election has driven everyone absolutely crazy. Profane amounts of money have been spent to win votes and the power that comes with getting more of them than anyone else. Elections turn people against each other. In the end, it’s debatable what ‘winning’ actually means.

No matter who we voted for, we are still autism parents. We have a ton of work to do to help prepare the world for our children and to help them grow into all the wonders they are destined for.

So, take a day, and do whatever you feel like you need to do. Celebrate or sulk, drink in sweet victory or cringe at the bitter taste of defeat, cheer or curse, whatever it is you feel is necessary. Get it out of your system.

Then, get ready and move on.

We have an enormous task ahead of us regardless of who won or lost. Refocus on what we must do next for our children. Remember we must do this together, united in support of the one treasure that is most important – our children.

No one is coming to do this for us. It’s up to us. Let’s get going.

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[Edit 9/12/2014 – NOTE: I Am An Autism Parent is now available via Amazon for Kindle and any device that has the free Kindle app on it. As a result, the book is no longer available for download via the I Am An Autism Parent web site due to Amazon restrictions about such things. Click here to go to the Amazon Kindle book page.]

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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The Saga of Our Son’s Broken Arm and What We Discovered

October 14, 2012

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 […]

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Stop Reading About Autism in the News

September 14, 2012

It seems like every other day a new article is posted about some new study or theory about what causes autism. Some of them sound at least somewhat medical, like autism relating to the age of the parents, changes in a gene sequence, or exposure to some chemical. Others are completely kooky like living near […]

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