January 2013

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.

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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.

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There is some debate about using the term ‘autistic child’ vs. ‘child with autism’, the latter being an example of what is typically referred to as ‘person-first language’. As you may have noticed, I typically use ‘autistic’. There are plenty of strong opinions about either form, not surprisingly. I have been asked many times about this, and it’s a fair question.

Person-first language means that you refer to the person first and then their ‘condition’ – such as ‘child with autism’ or ‘person with heart disease’ – rather than using their ‘condition’ as an adjective like ‘brain-injured man’ or ‘breast cancer patient’. In many medical, social services, and educational contexts this is established as an institutional policy. In a number of those settings, it’s considered a grievous offense to not use it in every instance, without exception.

However, I come at this from a different direction. Primarily, I use ‘autistic’ because it is usually the preference of those bloggers who are autistic. Many of them use the terms ‘autistic’ or ‘autistics’ as nouns, too. This to me in itself is enough reason to use the term in this way.

In the case of ‘autistic’, it is primarily used as an adjective. We use adjectives to describe each other all the time in our society, and most of the time there’s no assumption that a particular adjective completely defines someone. Just because I’m a white person or a male person doesn’t mean that’s all I am. Sure those are fundamental to who I am, and there are a variety of things that are very likely true about me as a result (e.g., society is sadly still very tilted in favor of both whiteness and maleness). So those define something essential about me, but I am more than those words.

The reality is that autism does define something essential about who our J-Man is and who we are as a family. It is the fundamental lens through which he takes in the world and processes everything. And there is absolutely nothing wrong with this. I think to relegate autism simply to the level of a ‘condition’ is to not fully appreciate autism’s place in the diversity of what it means to be human. But perhaps that is a reflection for another day.

Both ‘autistic’ and ‘has autism’ may arise from a different set of perspectives, but I think most everyone means well regardless of which they use. The expressed preference of autistic persons I have met in person or online has been the primary reason I use ‘autistic’ as I do. In cases where you can ask someone what they prefer, their preference trumps any other rule in my opinion.

My perspective is merely one among a diversity of opinions. Over time many people have asked me about this or raised this issue with me. Given its importance, I wanted to take a moment and give an account of why I make the choice of words I do.

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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.

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Three Words for 2013

by Tim on January 3, 2013

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.

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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.

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