This is the story of how I let my body fall apart. This isn’t quite yet the story of what I’m ultimately going to do about it, but that story is coming.

Today is also Diagnosis Day, the fifth anniversary of the day our J-Man was diagnosed as autistic. It’s often a day of many emotions for me. I look back at this autism journey we’ve been on. I see how far we have come on this road.

After spending the first couple of Diagnosis Days wondering how to celebrate it, the last two years I’ve celebrated this road by literally running marathons on it.

But then lately somebody planted a bunch of signs in the middle of my road. And I hit them. And it hurt. A lot.

I am writing this because the signs said, You are killing yourself. You are being stupid. You need to stop. Maybe you are seeing the same signs, and perhaps you can learn from my bad example.

I’ve been struggling for months with what I originally thought were ‘serious, chronic sinus headaches’ but which evolved into full-on, nuclear, apocalyptic migraines that have now lasted in some form 24 hours a day, 7 days a week, for almost the past two months. I have had less than 24 pain-free hours since January, all of which were thanks to strong narcotics.

After a long history of sinus and allergy issues, I figured these would eventually subside enough for me to start functioning OK again. It’s an ongoing cycle with me as the seasons change. I rationalized my way to various excuses. This turned out to be an epic mistake.

This wave of headaches that began in January didn’t go away; they just got worse and worse. The obvious solution was to make a doctor’s appointment, except I didn’t have a primary care doctor. The last two doctors I had were terrible, and I just gave up years ago trying to find a new one. Sorting through the available providers in the midst of headaches is not really the time to do that, but I finally did.

The earliest appointment I could get with someone recommended to me was three weeks after I finally made the call, a call I made at the kitchen table, sitting in the dark, in agony, while I was holding my head up with one hand and holding the telephone with the other. I hung up the phone and cried.

I made a lot of mistakes here, and as I approach my 40th birthday this year, I realize these are mistakes I can no longer afford to make.

A friend of mine was diagnosed with testicular cancer recently. He was smart enough to do the right things and catch it in time. A family member not that much older than us died of cancer recently. I have friends diagnosed in recent years with MS, strokes, and other possible life-threatening or life-altering conditions. Approximately 1-in-50 of my high school graduating class are now dead.

I am painfully aware of how important it is as an autism parent for us to be around for the long run. If something happens to one or both of us, I don’t know what would happen to our kids. Assuming we will be around, the quality of our physical lives is essential to being the kind of parents we want to be. There are many demands in our daily lives, and we want to do more than just survive. We want to be great parents.

Throughout this migraine disaster, Mary has had to be both parents most of the time. We both need to be somewhere in the vicinity of our best most of the time, but instead I’ve been nearly incapacitated.

I screwed up, badly. I didn’t have a plan in place to take care of myself. I ended up not waiting that three weeks and took myself to urgent care, got a CT scan (thankfully was clear), and was treated for a sinus infection (which I did have), but urgent cares aren’t designed for ongoing relationships of medical care. The headaches got a little better but then went downhill again. I finally limped into that appointment with my new doctor on the edge of physically falling apart. That was almost three weeks ago now. Today is about six weeks after I originally made that phone call.

I barely remember the last three weeks. It’s been a fog of medication, scans and labs (all normal, thankfully), numerous doctor visits, lots of time trying to find specialists, more trips to the pharmacy than I can count, lots of time bedridden or unable to get up out of the recliner, so much missed work that it’s a wonder I still have clients, and a trip to the emergency room when I just couldn’t take it anymore. And they still don’t know why I’m having crushing migraines.

I started writing this post weeks ago. My words have meandered and morphed and the point of this post has changed several times. I’m still hurting and my brain is clouded by the medications that are trying to make me better.

But here’s the cold, hard truth. And I accept it. If you absorb nothing else of what I say here, read this because you need to understand this for yourself.

This is my fault. I should have put things in place to take better care of myself and my health. I should have had a regular doctor. I should have gone to the doctor when I started having sinus and lesser headache issues last year. They could have done more to determine a baseline. It would have been much easier to look at prevention and lifestyle changes then. Now, I’m just surviving the day. And everyone around me is paying for it. I let Mary down. I let my kids down. I let the people I work with down.

I am not being hard on myself, so don’t even say it. It was my choice to not seek care for myself. It’s my responsibility and my choice. And it’s your choice. You don’t get to let yourself off the hook either.

I made many poor choices. I thought by exercising regularly and eating relatively well that I was exempt from all the other stuff. Wrong.

There are things you do to take care of yourself and to have the people in place you need to look after your health. There are things you do to take care of yourself and your health because you want to show respect to the people you love, to the people who love you. I didn’t do that. And my family is paying for that.

Learn from my mistakes. Take care of yourselves. Get a primary care doctor if you don’t have one. Get a yearly exam. Get your labs and scans done regularly and establish a baseline for you. Go to the doctor for chronic problems long before they get out of hand. It’s so much easier to prevent something or stop something early.

When this is over, I will have learned a very hard and painful lesson. I have lost most of 2013 already, and I will have many, many lifestyle changes to make.

One of the best ways you can say “I love you, too” to your spouse and child is to treat with respect the one they love – yourself. So, start doing that. Right now.

Image credits:
“Caution” –  ptufts via Compfight

“Soda and Pet Food City” –  Rusty Clark via Compfight

I am not a Catholic, but I decided to observe the election of Pope Francis and his surprise choice of papal name by reposting the Prayer of St. Francis for Autism I wrote a couple of years ago. St. Francis of Assisi is one whose example and words of compassion, strength, encouragement, resolve, and hope have spoken to me over the years, and it seemed fitting to me to post this here again today.

May we on this occasion recommit ourselves to serving and advocating for everyone in the human family until all are celebrated and loved.

A Prayer of St. Francis for Autism
by Tim Tucker

Lord, let thy peace fill me up until I overflow;
that where people cannot speak, I may be their advocate;
that where anyone is rejected, I may extend my arms in welcome;
that where parents are heavy burdened, I may offer a word of comfort;
that where our children struggle, I may lift them up and cheer;
that where some see disability, I may reveal to them extraordinary gifts;
that where others judge, I may share with them my deep gladness;
and that where any are overlooked, I may help the lights of all to shine.

O Giver of These Gifts,
grant that I may not so much seek to be reassured as to reassure;
to be praised, as to praise;
to be accepted, as to accept;
for it is in all our uncertainty that we are inspired to hope;
it is in great challenges that we discover our greatest joys,
and it is in our community of wanderers that we find the way home.

Amen.

The other day, Dale Jr. and I were driving away from the J-Man’s school to make the 15-minute trip to his preschool. Parenting a neurotypical three-year-old is proving to be a completely novel experience from moment to moment for me. I never quite know what insight he’s going to come up with next, and that trip between J’s school and his is when he often shares particularly creative insights into the world.

With no preamble at all, he begins, “Daddy?”

“Yes?”

“Do you remember that time [one of our autism parent friends] was crying and you gave her a hug and helped her with [child's name]?”

“Yes, I do,” as I remarked with some astonishment the fact that this had occurred many, many weeks earlier. “It’s good to give our friends hugs and help them when they are sad.”

“Yeah.” He paused thoughtfully for a long, few seconds. “The other day, I fell on the playground.”

“Yes, I remember. You scraped your hand.”

“Yeah, and I was really sad. And [classmate's name] came over and helped me up and gave me a hug and I felt better.”

“Yes. That was very nice of [name].”

“Next time when one of my friends falls down on the playground, I’m going to help them up and give them a hug and make them feel better.”

He got it. I felt such overwhelming pride in him.

We live in a world where help and comfort are so often handed out based on whether we think someone deserves it or has earned it. As families, we receive aid and support based on a formula in a budget. We are judged by passers-by in stores who don’t think we are adequate parents and that our kids would ‘behave better’ if we didn’t suck at parenting. If we do get help, it’s so often considered pity or charity by a society that simply does not get it.

Dear world – my son would like to tell you how it’s done. If someone is sad, comfort them. If someone falls down, help them up. If someone is struggling, give them a hug and help them feel better. That’s it. Don’t overthink this.

It’s a tough playground out there, y’all. Be good to each other.

Some friends of mine and I were trying to decide what one thing we would say to a parent whose child recently received an autism diagnosis. Not surprisingly, these autism parents with many miles under their belts had a number of great ideas. These conversations naturally weave themselves into pages of advice because there is just so much we have to say after all our collective years as autism parents. Someone asked me this same question in an interview a while back, and I think I responded with about seven paragraphs.

It seems impossible to shorten it all into one simple truth. What could possibly distill all the challenges, joys, high, and lows into a statement of hope? What can we say that doesn’t sound hollow or fake but yet points all of us toward a future of promise and possibility we can commit ourselves to?

I’ve thought a lot about this in recent weeks, and here is at least one fundamental truth in the simplest way I know how to put it. I’ve seen this bear itself out time and time again, and I know others have, too.

If you are reading this as a new autism parent, this is what many of us would like to say to you.

You are not alone.

When it sucks, you are not alone.

When you are terrified and exhausted, you are not alone.

When you want to celebrate your child’s achievements no matter how small, you are not alone.

When you want someone to tell you that you are not crazy, you are not alone.

When you are haunted by your own demons or battling your own addictions, you are not alone.

When you want to brag on your child for doing something they’ve never done before, you are not alone.

When you have to fight against immense odds to get what your child needs, you are not alone.

When you have absolutely no idea what to do next or where to turn, you are not alone.

When you don’t want to explain everything and just need someone who understands, you are not alone.

When you think you have to do all this by yourself and don’t think you can, you are not alone.

No matter what is happening to you, someone else has walked a similar path. You are not alone.

There are other autism parents who understand what you are going through, and you will find some who will walk with you no matter what.

Reach out. Find your tribe of support. Walk with them through every high and low.

We rise and we fall together. We are stronger together than we are alone.

And we are not alone.

I know I recently said that saying ‘no’ is an essential practice for autism parents, and that you can pretty much say ‘no’ to everything except your family and what is most essential to your well-being.

But I want you to say ‘yes’, too. Practice saying ‘yes’ to what matters most. Practice saying ‘yes’ to affirm who you are and who you seek to become.

Here are some yeses to get you started.

Yes, you are going to make it.

Yes, it’s OK to take care of yourself.

Yes, it’s OK to hide in the bathroom and cry.

Yes, you will get up off the floor and keep moving.

Yes, you can ignore all the people who are critical of you and your parenting – even if you are related to them – because they are full of it.

Yes, you are afraid, and that’s normal.

Yes, everyone around you is afraid, too.

Yes, you are often odd, quirky, and a little weird. Yes, that’s endearing, and it’s why good people like you.

Yes, you can have an extra cookie. The world will not end.

Yes, you are not alone.

Yes, there are people out there who will help you.

Yes, you are fine the way you are.

Yes, you are an autism parent, and you are awesome.

And, yes, you can do this.

What’s one rarely-discussed practice that can help autism parents every day?

Practice saying, “No.” A lot.

Then do it. A lot.

You are not being mean or unkind. You are prioritizing. You are aligning the energy and time you expend with what is most important to you. You are intentionally deciding what to spend that time and energy on rather than just giving it to the first people who ask.

You do not get bonus points or merit badges for wearing yourself out. All you get in return for all that effort is exhaustion. You don’t do anyone any good if you are a barely-functioning zombie.

Usually our first reaction when someone asks us for something is to say, “Yes.” I’m giving you permission to do something you may think is selfish, even though it’s not. I’m giving you permission to say “no” as often as you want, to whomever you want, if saying “yes” does not align with your priorities of taking care of your family and yourself.

If you say “yes” to most of the people who ask you for something, you often end up saying “no” to your children, your spouse, your health, sleep, time to eat a decent meal, work, everything on your to-do list that really does need to get done, and activities that would make your life better.

Practice saying “no” in front of a mirror if you have to. If you’d feel better giving people a reason, write one or two out and memorize it. Tell people you are overextended or overwhelmed and need to focus on things at home right now. That’s likely true anyway. I even give you permission to make up a reason if you need to.

Is it possible the person you are saying “no” to will feel hurt? Perhaps. There’s also a good chance they will understand. Regardless, your priorities are important, and protecting them is essential to the well-being of your children, your family, and yourself.

What if you’ve already committed yourself to activities that are taking you away from your priorities? It’s OK to quit them. Explain that you are overwhelmed, and you need to simplify your life in order to do what you need to for your family. Transition yourself out of whatever it is or just quit.

Feelings may be hurt, but life will move on. You are not doing this to be mean; you are doing this for your own sanity and the well-being of your family. Whatever it is will survive without you. If you didn’t really want to be doing those things in the first place, you’ll feel better soon after you quit. Trust me.

If after you’ve addressed the priorities in your life you have some time and energy left over, awesome. Say “yes” to something that helps others and aligns with your personal priorities. But start with the essentials of your life and move outward, not the other way around.

You may think I’m giving you permission to be a selfish jerk. While I wouldn’t use those words, call it what you want. What I’m suggesting you do is make choices based on what is most important to you. To do that, you have to say “no” a lot. And most of us, including me, seem to feel we need permission to do that.

So here’s your permission. The challenges and responsibilities you have on your plate right now as autism parents are enormous. You need to be able to focus on them as completely as you can. Either people will understand (yay!) or they won’t (you don’t need those people in your life anyway).

Will this solve all your problems? Not likely. But you’ll never get to a much better place in your life until you reach one where you have the time and energy you need to focus on what matters to you most. It’s a start, and a critical one. It’s ultimately how you start being able to say “yes” to everything that matters to you.

We put untold amounts of pressure on ourselves every day. We expect ourselves to be far beyond human. As part of your personal goals for 2013, practice letting this pressure go.

Our lives are often a blur. We get to the end of the day, and we typically have no idea what we actually accomplished. If we figured that out on a regular basis, we might surprise ourselves at what we manage to do even with all the stresses going on in our lives. And after doing so we might be able to allow ourselves to let some of that go and focus on what really matters.

Just for giggles, I decided to write down what I did today. I’ll spare you all the riveting detail, but basically the highlights involved starting the day a little earlier than we have been, consuming six cups of coffee, getting kids ready and out the door, spending 2.5 hours driving kids to and from school and camp, actually getting a couple of billable hours of work done, doing a few chores, and managing to give our J-Man a home haircut without an unreasonable amount of stress or injury. I guess writing this post counts, too.

I’m declaring victory on that alone.

This is a pretty low-key day for us comparatively. Nothing weird happened. Some things got done. Everybody got where they needed to be and back home again. Adequate food was consumed. No medical attention was required. All stresses were within what passes for normal limits. The kids had great days at camp and school. Many good things happened.

No one is going to write epic poetry about this day. No songs will be sung. No medals will be awarded. This is just the everyday stuff of life.

There will be days when much more is required of us. There will be days when the mountain threatens to collapse on you. There’s a season for everything.

Regardless of what your day looks like, here’s really all you have to do:

• Breathe
• Keep your children alive, and love them
• Put on some clothes (optional)

Cut yourself some slack. Anything beyond these items, declare victory. I’m doing that today. I’ve earned it, and so have you.

I suppose I’m a little late posting these, but I figure I’ll set an example that there’s really no need to stop thinking about your personal goals after January 1st.

At the beginning of each of the past few years, in lieu of resolutions, I’ve chosen three words to act as a vision statement for the year. If you want to read about my previous years, you can do so here: 2012, 2011, 2010.

I won’t beat my 2012 year-in-review to death, but my success was all over the place. For 2012, my words were Simplify, Liberate, and Ship. I completed another marathon, finished and released my first book I Am An Autism Parent, worked with some autism parent friends to create Autism Shines, and completed a few smaller projects, so I give myself an A+ for the Ship goal.

However, the other two proved to be much harder than I ever thought they would. I underestimated them greatly. The Decrapify My Life project was largely a bust, though I’m not at all giving up on it. Our house is still a cluttered mess, our debt is not really any better, and my business is still more on directionless auto-pilot than anything. I did try, and a lot of things did come up during the year, so I will show myself some grace on that front, but the personal work I need to do to achieve my goals here has proven much more extensive than I ever believed necessary. But living and learning is part of all this.

In many ways, 2012 got away from me. Lots of things happened, we had a variety of health issues in our family to contend with, and all of the sleep problems in the house led us to such a state of sleep deprivation that doing anything got very hard. I put too much pressure on myself goals-wise without really first doing the work of understanding how to achieve them. But I consider that insight to be an important one. So, that understanding is a big part of the direction I’m shifting in for this year.

So, with that said, here are my words for 2013. This year is brought to you by the letter ‘F’. (Just kinda worked out that way.)

Freedom – I’m going to look at my goals of getting out of family debt and doing work I love by focusing on the real, emotional point of it – freedom from those things that prevent us from being the people and family we want to be in our house. Remembering that my professional work is about helping people achieve their goals, enjoying what I do, and helping my family have a good income puts things in perspective. I see this as a freeing attitude, one that does involve a personal adjustment. Freedom is also about decluttering our home and lives, simplifying obligations, worrying less about things I cannot control, and attending to the people and work most important to me.

Focus – As someone with ADD, focusing on tasks can be very challenging. My goal is to continue learning a variety of techniques to help me better focus on what I choose to work on, and then intentionally use those skills to improve my home and work life. I’ll systematically take the steps needed to make progress on my goals and follow through to the completion of those tasks and projects.

This will require a wholesale change in habits as I believe my myriad bad habits are what made my goals for 2012 such a mess. Habits are the fundamentals, and those foundational changes will help me be able to make much bigger improvements in our lives. That said, I do think I made strong gains here in 2012. Releasing a 30,000-word book is no small feat of focus. But I have big aspirations and plans, and learning how best to focus on diligently progressing toward those goals will help me achieve them.

Fire – Here I’m thinking of ‘fire’ both as a noun and a verb. As a noun, ‘fire’ captures a passion, a personal drive to work on things I’m excited about, and letting that fuel me. I want to give more of my time and energy to things that fire me up. My hope is also that I’ll learn to find the fire in the everyday activities of life. As a verb, ‘fire’ can mean to take aim at a target or goal and launch something toward it. It’s not a shy word. For me it’s about taking my work, putting it out into the world, and seeing what happens, and not being afraid to do it or of failing at it sometimes.

As far as specific, measurable goals for the year, I’m not going to worry as much about that. This is my 40th year on this Earth, and the temptation is to overdo it with grand goals. My plan is to have no more than three main goals I’m focusing on at any given time (goals I can achieve in a month or less), and then focusing and working on them to completion. These small and medium wins will add up.

I also want to be able to adapt to opportunities as they arise during the year and adjust when things go awry as they always seem to. I’m building in both opportunity and room for grace. I also want to practice not worrying about things I can’t control and letting go of many goals for a while so I can really focus on doing specific ones well and finishing them.

No matter what you decide to do to meet your goals for 2013, when you find yourself ‘failing’ at your resolutions, join the club. We fall down; we get back up; we repeat. Remember that tomorrow morning starts a new day. No need to wait until 2014 to try again.

I wanted to start the year off on a positive note.

After weeks of struggling with sleep issues in our house, and then adding holiday stress and illnesses on top of that, December was not our finest month. And it’s not like any of these went away just because the new year started.

Like many of you, we also have carried a terrible sadness since the tragedy at Sandy Hook Elementary in Newtown, CT. Several people have asked me my response both as a parent and as one concerned about the link so many in the media have irresponsibly made between autism and Asperger’s and these murders.

I have been unable to find any coherent words to pierce the grief and terror of it all. I cannot even begin to imagine the pain of loss these parents feel. My heart goes out to them. This is every parent’s worst nightmare.

I had hoped the major media outlets would use their reach and influence to try to heal a broken community, nation, and world. However, entire blocs of the media have completely abdicated their responsibilities and have instead compounded this unspeakable violence by stating – either implicitly or explicitly – that these horrific acts are linked to the murderer’s supposed autism. Not only has no link ever been established between autism and planned violence, there’s no clarity on whether the murderer was on the spectrum to begin with. It’s all hearsay and conjecture, and the most irresponsible kind.

But enough of that. This has been covered at length by people more wise than me.

As angry as this made us, some autism parent friends of mine and I decided to try a different approach – tell a new story. Perhaps it’s not as much a new story as it is telling the world the one we already know.

We wanted to celebrate autism and the people we love through photos and positive messages. We wanted the world to see the faces of autism and to hear the stories we had to tell. We wanted to do something to change the world for the people we love, particularly because it felt more and more unsafe for them in the wake of this massacre and the media stories.

And that’s how Autism Shines was born, first with a Facebook page and now with the Autism Shines web site.

One of Autism Shines’s co-creator’s, Lexi Magnusson at Mostly True Stuff, gave some great background on how Autism Shines was created basically in the span of a single day. I don’t have much to add to her story except about the name itself.

Autism Shines came to me as a name years ago. It felt like an antidote to all the negative stories told about autism, but I never really knew quite what to do with it. I went ahead and registered the domain name just in case and have had the Facebook page set up but hidden and blank for a long time. I guess I was just waiting on the right project to come along to match the name.

So literally as I was sitting on the edge of my bed about to go to sleep, my friends were talking on Facebook about this idea and saying that all we really needed was a name to tie it all together. And the name I hadn’t thought much about in a couple of years popped into my head immediately. It instantly resonated with everyone. It was the perfect fit.

I made them admins of the Facebook page, set it to public, and went to bed. At that point, it had one ‘like’ – me. They started posting photos they’d already received, and Autism Shines took off overnight. In less than two weeks, people have submitted hundreds of photos, and thousands of people have visited the Facebook page and web site.

I am really proud to be a part of this project. The stories and pictures are beautiful. I look through them, and they bring me to happy, soul-filled tears. They are a celebration of life and the people we love. Through the photos people are sharing on Autism Shines, it has become one light born out of this tragic darkness. So many lives and their stories were lost that day in Newtown. Nothing can ever replace that loss. Perhaps by telling all of our stories in this way we can continue trying to bring more hope into the world.

Need a good way to begin your year? Go visit the Autism Shines web site and Facebook page. Bring a box of tissues. Look through all the photos and read the stories. Then feel free to submit your own photo, and join us in celebrating the people we love.

This is how we begin to change the world.

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.

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.

[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?

All 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.

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.

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.

A 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.

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.

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.

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 suburban highways or the moon phase when the child was conceived. (OK, I made that last one up, but it’s not any more bizarre than some I’ve read.)

People often ask me how on earth we’re supposed to make sense of all these studies and news articles when most of us have little or no scientific background? Very good question. It’s one I think I at last have a response I’m satisfied with. And it’s one I think a number of people won’t like. Here it is.

Stop reading them. All of them.

If you see a headline suggesting anything causes autism, run. If you see a headline suggesting some new treatment for autism, run. Do not click on it. Do not read any part of it. Try to pretend you didn’t even see the headline.

I’m not kidding.

If scientists discover something that actually holds up under exhaustive research and that would make a significant difference in our children’s lives, you will know. There would be no way to remain in the dark about such a momentous discovery. Anything else beyond a rigorously-tested conclusion verified over time by multiple studies is just a distraction to most of us.

You can find a study somewhere suggesting links between autism and literally a thousand different possible causes. They come out about every five minutes. Most of these studies are barely the beginning of the rigorous research required to draw any serious conclusions. And many of them are total crap.

To have any real validity, any findings have to endure the scrutiny of other scientists, be reviewed and tested again and again, and generally withstand the test of time. One small study and a press release do not constitute scientific fact. It is at best step one of a very long process. Many of them are plain worthless.

Reports of these studies get published in the news before their conclusions are barely even tested. You see them online as “Autism may be related to X” where X may be just about anything you could dream up. People pounce all over them if they support or disapprove their favored theories about autism. Many parents have no way to know whether the conclusions are remotely valid or not.

If it’s in the news, that gives it weight and credibility, even if the studies don’t deserve either. This is why I’m telling you to stop reading.

Many of these news articles are written by people with little scientific knowledge. They lack the expertise to question the studies’ authors. They just report whatever the researchers tell them, and believe it or not, often the news writers come to conclusions that even the researchers themselves did not.

When all many of these studies do is confuse us and take away energy we need to spend elsewhere, all for theories that are rarely more than conjecture anyway, I suggest that our best approach is to ignore them.

I’m not qualified to critique the intricacies of most research, particularly without access to the paper, the data, or much of anything else. And frankly, it’s quite likely neither are you.

Occasionally a quality study will rise up in the news. They are often the ones that come with little fanfare. The reality is that most research isn’t all that glamorous or earth-shattering. Discoveries are made slowly but surely through dedicated, meticulous effort, rigorous testing, and careful thought as to what it all means. They unfold over time through the dedication of scientists determined to find the truth. Most studies in the news have not even begun to approach this standard.

I am all for the expansion of knowledge, but think about it. When did any study last do anything but add confusion and stress to your life? How many wrong directions have you been steered in? When did you last learn anything you could use? Assuming you did, did it actually help? It’s more likely these articles left you feeling guilty, confused, misled, or all of the above.

You and I only have finite amounts of energy and time. We need every bit of it just to have a chance to do the essentials each day. I often tell people, “If it’s actually urgent, important, or essential, set it on fire and throw it at me. Otherwise, I’ll likely ignore it.”

Ignoring news reports about autism does not mean you’re shirking your responsibility to learn what you need to know about autism. You are prioritizing. This is triage.

What is most essential right now for you to help your child? I truly believe that 99.99999% of the time news about autism in the media doesn’t meet that standard. Focus on what does.

Give yourself permission to focus on what’s most important. I believe you’ll be glad you did.

Two years ago, I went through one of the worst periods of burnout in my life. It was so bad that I dubbed it The Great Burnout. Everything took enormous effort. I was doing everything badly, I was noticeably overweight, my health was going downhill, and I felt defeated. I sincerely believed I wasn’t strong enough to be a parent anymore.

My sister’s family kept the kids for a week while Mary and I went to a remote cabin to sleep and regroup. I did almost nothing except sleep for four straight days. I finally woke up enough to realize I couldn’t live like this anymore. If I wanted to be the parent our kids needed, it was up to me to get it together.

I came to understand one essential truth: Your child’s success is inextricably linked to your ability to take care of yourself and become a strong enough parent for what you’ll encounter.

We can write-up and follow the advice of “8 Steps To Doing This” and “7 Tips for Success at That” type posts every day and still not take care of a fundamental part of the equation – us.

Going from Burnout to a Better Life

We frantically run ourselves into the ground, calling it ‘sacrifice’. Sacrifice is laudable, but that’s not what we’re actually doing. Sacrificing is about selectively and carefully giving up something important to help someone else gain or succeed. Therein lies the key. It’s done thoughtfully, carefully, and to achieve a certain goal. Burning ourselves out isn’t thoughtful, careful, or anything else, and it certainly doesn’t help our children.

Ideally, we’d sleep eight hours a day, exercise 30 minutes most days, eat well-balanced meals, take time for ourselves, and all that, but we all know how hard that is. What I decided to do to change my life was much simpler.

I resolved to make small changes over time and let that build up toward a healthier lifestyle. I knew I was not helping my kids, my marriage, or myself with my old habits. I had to start changing a little at a time until I got to a better place.

I believed that in time I would create enough momentum to make lasting changes in my life, and these changes would then make me a better, more present, more engaged, and generally more capable parent. And I believe it has.

Small Steps to Get Started

Since I made this decision, I’ve run over 1,700 miles, completed two marathons, lost about 30 pounds, improved my health tremendously, gotten off most medications, and, most importantly, most days I feel more able to manage the ongoing needs of our children. I did all this by starting small, keeping at it little by little, and not quitting.

But here’s the hard truth that has become so apparently to me lately. The decision to take better care of yourself is one you have to make daily.

It has been very hard around here lately. This summer has been a real struggle. I’ve slipped in several of my habits, and it shows. I’ve put a few pounds back on, I’m not in quite the shape I was in, I haven’t been exercising much, and my diet leaves something to be desired. I’m slipping because I lost focus on why it’s important to take care of myself. So I’m posting this now as much to remind myself of why I need to do this and the approach of taking small steps to get there.

So here are some small steps I’ve tried over the past two years. Let’s all pick a couple and get started today.

• Do whatever you can to add 15-30 minutes of sleep to your night. Give up anything in your schedule that isn’t essential. Sleep makes everything else possible.
• Meditate, pray, or just breathe quietly and sit still for five minutes a day. It’s challenging at first, but as an ongoing practice it does wonders for your mood.
• Add some sort of physical exercise. Start with a few minutes a day. Keep it simple. Go up and down stairs, dance around your home to good music, lift gallon milk jugs or laundry detergent bottles, whatever works. I know you’re exhausted, but trust me. It won’t take much to start really improving your life.
• Gradually ditch one unhealthy item in your life. I gave up soft drinks over a period of three months, lost a bunch of weight, and felt way better.
• Turn off your TV, at least the news and advertisements. Ads exist solely to tell you how unworthy you are, a message we do not need, and news is full of things you honestly can’t do anything about. Focus on what you can change – your life.
• Do something for yourself each day. Read a book for a few minutes, drink your coffee slowly, listen to some music you like. Little acts of self-care can do wonders.
• Practice affirmations. We often think we’re clueless idiots. Affirmations counter that. Pick a few and commit them to memory. “I am a superhero parent”, “I kick ass”, whatever works for you. Read inspirational quotes each day. Keep a list of ones you love.
• Learn to say ‘no’, ruthlessly if you have to. Your job is to take care of your children and yourself. That’s it. The rest can be ditched. Start clearing anything out of your life that isn’t essential.

As parents of special needs children, we have numerous demands and responsibilities to manage. To help your child overcome their challenges, start overcoming your own and become the best parent you can. When you can be more present and engaged in your child’s daily needs, great things can happen.

I am very excited to announce the upcoming release of my first book, I Am An Autism Parent, this October! This is what I’ve been working on while I’ve been largely absent from here and the blogosphere these past few months.

I wrote I Am An Autism Parent primarily for parents who are either just receiving an autism diagnosis for their child or who are in the process of seeking one. However, our rollercoaster of autism parenting is an ongoing one no matter how long we’ve been on this road, so I think this book will have a lot to offer everyone.

It is a very different autism book from most anything I’ve seen, and it is certainly a departure from the how-to books many of us have read. It is about the emotional journey of going from diagnosis to embracing your identity as an autism parent, wherever you happen to be on that path.

I wrote it as an open letter to autism parents because I want you most of all to know, no matter how you feel right now, that you can do this. We face countless challenges, but from them arise so much beauty and wonder. Our kids are awesome, and they have so much to teach us. As we grow in skill and wisdom as parents, our ability to help them shine will grow as well. This book is about discovering how to get there.

There is a seemingly unending stream of negative and discouraging messages about autism, and I wanted to tell a different story. In part I wrote I Am An Autism Parent because I want to tell a story that is both honest and encouraging. I know as a new autism parent that I wanted someone to help me see things in a real and positive light, support me, help me know I’m not alone, believe in me, and tell me I can do this. I hope that this is what this book will accomplish.

I Am An Autism Parent is the culmination of what I’ve learned as an autism parent. It’s everything I want to tell a new autism parent. It’s a message I want to share with all of you with whom we share this journey.

And getting this message out to autism parents is so important to me that I will be sharing it with everyone for free.

You can read a short excerpt of it, which I have entitled The Autism Parents Vow, right now. In this excerpt is the vow I wrote to our J-Man and the promises I made to him early on in our journey together. I have read and re-read that vow many, many times, and I still cry every time I read it. The words mean more and more to me as time goes by.

You can get The Autism Parents Vow as a free PDF on my new I Am An Autism Parent web site. I must say that I am really proud of it. The feedback I have already received over the past day or two since the site went live has blown me away. I am so thankful to those people who have shared their responses with me.

The initial version of I Am An Autism Parent will be released in October as a free PDF designed specifically for your computer or tablet device. I’m releasing it first to everyone who signs up and says they are interested. When you sign up, you’ll also get a few missions – exercises you can do yourself – and future announcements about this book and other related resources. To sign up, go to the I Am An Autism Parent web site, and enter your e-mail address in the signup form. (It’s free. And don’t worry, I won’t share your e-mail with anyone. Spam is evil.)

Thank you to everyone who has helped me bring this dream to reality, and particularly those who encouraged me to write this book from its very beginnings. I’m excited for you to read it!

So head on over to the I Am An Autism Parent site, download The Autism Parents Vow, and while you’re there, consider signing up to get I Am An Autism Parent before its public release and some other good stuff.

Thank you all for being here, and thanks for being awesome.