Autism Parent Commandments and Beliefs

The Commandments

Thou art enough.

Thou shalt assume competence in thy children and everyone else’s.

Thou shalt seek out other autism parents in person, on Facebook, or wherever for support and community.

Thou shalt giveth thyself a break and accept that thou art human.

Thou shalt laugh at thyself. It shalt make you feel better.

Thou shalt ask questions. There art stupid questions in this world, but autism parents doth not asketh them.

Thou mayest feel what thou feelest. There art no shame in that.

Thou shalt celebrate thy children’s hard-earned achievements, no matter how small. However, if it involves doing the Riverdance, thou mighst want to closeth thy curtains.

Thou shalt be an advocate for thy children whilst knowing that we haveth thy back.

Thou shalt never give up.

The Beliefs

There’s nothing ‘wrong’ with our child or yours. He or she may be struggling to overcome some or many things, but our children are perfect just as they are.

We are stronger together than we are alone. Let’s find each other, join up, and become even more unstoppable than we already are.

We will do what is necessary to help our child reach his or her full potential.

We know more about our child than anyone else. We will not blindly accept the judgments of others, no matter how ‘expert’ they may be.

We will, however, listen to advice given to us. We reserve the right to use it, adapt it to our needs, or ignore it and make fun of it.

We are perfectly fine with people asking us questions about our child and our experiences. We are all about raising awareness and being advocates.

We must learn from each other. There is a lot of information we can share, and we have a rich, diverse set of experiences. Learning this way is how we become better parents.

We will work to be OK with not being perfect. We will work to be OK with not being OK with not being perfect. Repeat.

People who stare at us in stores will get stared back at and judged.

You have our permission to say something sarcastic or be blatantly rude to anyone who makes an idiotic comment to you in public. Example: “No, I never thought about talking to my child more. We decided before we had children that we were all going to become mimes.”

Anyone who judges our children, says anything derogatory about them, or, God help them, makes fun of them will get their posterior kicked and their name taken. Once time travel is invented, we will go back in time and smack their parents, too. We are fiercely protective. Don’t mess with us. Seriously.

Parents who can affirm each other with all their flaws and foibles, and be supportive and understanding in the midst of all the emotions that come with this, are the best people we know. We love you!

52 Things I Want You To Know

This is from issue #52 of the weekly I Am An Autism Parent newsletter! One whole year! So here are 52 things I want you to know in celebration of the occasion.

  1. You are enough.
  2. You are a finite, flawed human being, and you are still enough.
  3. You are not crazy.
  4. Acceptance is hope; it’s not giving up.
  5. Always presume competence, in your child and in yourself.
  6. Don’t stand for it when anyone says your child is damaged, broken, or anything else derogatory. They are wonderful as they are.
  7. Celebrate every achievement great and small.
  8. Five of the best and bravest words you can learn are “I need help” and “Thank you.”
  9. Say ‘no’ to as many obligations and requests for your time as you possibly can.
  10. Get some more rest any way you can.
  11. Cut yourself some slack, even if it means your kid has to get through this evening with tortilla chips and an iPad.
  12. You’re not the only one who is afraid.
  13. Stop comparing your child to others.
  14. You don’t need to measure up either.
  15. Take a few minutes each day and breathe.
  16. Don’t hide at home. Get out in public, even if it means ‘raising a little autism awareness’ at the store.
  17. You can do hard things; you will learn how to do even harder things.
  18. It’s your beloved child we’re talking about here. You will do what it takes to help them overcome their challenges.
  19. You are not perfect, and you don’t have to be.
  20. You don’t have to be normal either, and it’s better if you aren’t.
  21. Surround yourself with people who celebrate your child and you.
  22. You don’t have to be ready; you just have to be willing.
  23. Do the next right thing and just do today. Try not to worry about all the things in the future you have to do or that could go wrong.
  24. You already are a hero.
  25. Choose love over fear.
  26. Don’t make decisions out of fear.
  27. You are going to be OK.
  28. You can learn to feel OK with not being OK right now.
  29. Love and hope are available even in the most difficult of situations.
  30. You are not alone.
  31. Reach out to other autism parents online, form relationships, and draw on the power of our community.
  32. None of us has it all together, and that’s OK.
  33. It’s hard to be not remotely good at something, but that’s OK, too, because it has to be.
  34. What if everything going wrong right now were OK?
  35. There are so many of us that there will always be people who understand what you are going through.
  36. Everyone is fighting a great battle. Be kind and reach out to help.
  37. We’ve all been through hard battles, but we are still standing.
  38. Anything worth doing is hard.
  39. We are stronger together as a community than we are on our own.
  40. Autism parents are relentless and unstoppable. God help those who stand in our way.
  41. Everything challenging is done one little step at a time.
  42. No battle we fight is in vain.
  43. Failure is an option; it’s how you learn.
  44. You have permission to stop feeling guilty, not explain yourself to anyone, and ignore any advice given to you.
  45. You also have permission to do absolutely nothing and not worry about the future right now.
  46. You don’t have to care about something just because someone says you are supposed to.
  47. Be who you are, without apology.
  48. Be willing to feel stupid because it’s the only way to begin to learn new things.
  49. Decide now that you will get up every time you get knocked down. Decide now that you will not quit, no matter what it takes.
  50. There is always hope.
  51. You will find a way.
  52. Our children look to us to make the world a place where their light can shine. Go make it happen.

Go Toward What You’re Scared Of

When our younger son was diagnosed with cancer last year, not surprisingly, I was terrified. I had no idea what to do or think or say. I was paralyzed.

That first night, I sat there and thought, What do I do now? I realized I didn’t really have any choice what to do. I had to go toward him and his diagnosis, just like I had to do when our older son was diagnosed with autism.

I learned in the process that going toward what scares us is the only way through it. If you think about it, we spend most of our lives avoiding things like this, and rarely does that work out very well for us. We just end up stuck in the same place we always are.

We’re afraid to brave the stores for fear of meltdowns. We’re afraid of trips and being away from home because of all sorts of reasons. We’re afraid of IEP meetings because we don’t know what fights await us. We’re afraid of anything that is unknown to us, which really is just about everything if you think about it.

We also may avoid people in pain. We shrink back from the struggles of others. We go numb to the anguish around us. We protect ourselves from the feelings that come when we share in others’ suffering. I learned about this in the pediatric oncology unit at the hospital. So much hardship, so much loss, so much heartache, so much pain. But also so much hope and strength I never understood before. So much they had to teach me.

We can spend most of our lives avoiding unknowns, and it seems like it doesn’t cost us much. A lot of the time we aren’t even aware we’re doing it.

But it does come with a cost. It comes with a sacrifice of growth and possibility. It comes with a loss of potential and opportunity. We won’t experience the same relationships and depth. We’ll never know what can be if we don’t go toward what we’re scared of.

Easier said than done, I know. But as with many things, what we’re doing right now isn’t working that well for us. Be honest. The better approach is to try something new, something bolder.

You’re an autism parent. You already know how to be bold. You didn’t have much choice but to learn how. Summon that one more time, then again, then again. Go toward something that scares you. Try.

It’ll be hard. Maybe this next time it’ll be a failure. Who cares? Maybe it won’t. It’s highly unlikely it will kill you. Maybe, just maybe, it will transform you. But I do know that doing nothing just keeps you right where you already are, scared and nowhere near where you want to be.

You already have courage. Reach down and get some of it. Then go toward something that scares you.

Worried About What You Could Be Doing

Probably a hundred times already today, and perhaps even just a second ago, you worried about what you could be doing.

You could be doing something on that to-do list that’s screaming at you. You could be making that call you need to make. You could be filling out that form that’s been sitting there for days. You could be doing more with your child. You could be doing that load of laundry or the dishes or any of a few dozen chores.

You could be eating better. You could be exercising. You could be more productive. You could be sleeping more. You could be more interesting. You could be doing as well as your friend who seems to have it all together.

You could spend less time on Facebook. You could spend less time keeping up with everyone else’s lives. You could be spending more time with the people you love. You could be worrying less.

You could forget, at least for a while, about all the things you have to do later. You could think less about the person you think you’re supposed to be. You could spend less time trying to be someone you’re not.

Or you could. just. stop.

Just stop and let this moment be enough.

There’s no perfect version of your life where you can or are doing all of these things. There never will be.

You’re finite. You’re flawed. You’re human. The reality is that you’re stuck with this. That’s just how it is.

But, much more importantly, you’re enough as you are, in spite of all this.

All these feelings of being finite, all these ‘flaws’, all this lack of perfection, all that is what makes you who you are. All your frustration at being this way is part of who you are, too.

You have plenty of practice judging yourself. And I’m sure that’s not working out too well for you. It’s sure not for me. We spend a lot of our moments giving our attention to what we could be or should be.

But the truth is, we just don’t have that many moments in this world. Things change quickly on us. Our kids grow up. Friends come and go. The people we love don’t live forever. Our moments are precious.

It’s unrealistic to think we can savor every one of them. Again, we aren’t perfect. Don’t try to be perfect at this either. But at least try sometimes to be attentive to a moment – one here, one there during your day – and let it be enough. They add up, and they matter.

You are enough. Let this moment be enough. If you forget, that’s fine. Be kind to yourself, then try to remember again.

The Hard Battles We Are Fighting

Everywhere I look, people are fighting. Sometimes that’s a good thing, a fighting for something, but that’s not what I’m talking about right now.

Usually, it’s a negative. We fight against people we’ve made our enemies. Sometimes it feels deserved, like when it’s a school system depriving our child of services. Oftentimes it’s ridiculous, like when we devolve into hours-long flame-fests about politics, as if that’s ever going to change anyone’s minds.

And then, of course, the autism community often fights like a dysfunctional family. Far too much.

The familiar quote with many variations (believed to belong to Ian MacLaren), “Be kind; everyone you meet is fighting a hard battle,” holds so true. The real battles of life shake the foundations of who we are. Perhaps, that, too, is also why we fight so much. Those soul-rending battles we each personally fight raise the stakes of everything else so high.

But this week I’ve been given perspective in a way I never wanted to learn. You discover the great and terrible battles some others face, and you are humbled. Or you should be. It puts the petty things in your life into perspective. And these kinds of battles are happening all over the place.

It got me to thinking, maybe against my own usual counsel, that perhaps I should just blow off people like those in the store who judge how my kid acts or my parenting skills. Maybe they had crappy parents and bad childhoods where they were held to impossibly high standards. Maybe their hard battle is that they hate who they are.

Perhaps the defensive and unhelpful teacher goes home and feels like she’s a terrible person and a fraud for even pretending to be a professional anything. Maybe when we talk to her, she hears her own parent’s voice. Maybe the school administrator giving us the runaround is avoiding tension because their home was full of violent conflict growing up.

Maybe I’m just completely full of it with all this. That’s always entirely possible.

Does that mean we shouldn’t fight for our children or fight for what is right? Of course not. Does that mean we shouldn’t hold beliefs and advocate for them? Absolutely not.

But could we do so more compassionately? I believe we can. I believe we have to. All the anger does is tear ourselves apart. We could all be more understanding and still be clear about what we want.

But 99% of the time, the essential stuff is not what we are angry about anyway. We get furious about petty crap that doesn’t really matter. We expend so much emotional energy on trivial nonsense. We drag emotional baggage around like 10-ton weights behind us.

Anne Lamott tells the story of her friend Pammy, who at the time was dying of cancer. Lamott was shopping for a dress, and she asked Pammy whether it was unflattering. And Pammy replied, “Annie, you just don’t have that kind of time.”

And you don’t. Your days, your energy, your life are too precious to spend on nonsense.

Don’t read the comments in just about anything on the Internet. Don’t engage in mean-spirited political debates. Don’t watch the news. Don’t watch commercials. Don’t share spiteful things on Facebook. Don’t fight about things that aren’t matters of earth-shattering importance. Don’t think twice about the jerk in the store.

But really I can’t tell you what to do with this. I don’t even know anyway. I just feel like I need to change.

Maybe start today looking at your own life and the lives of those around you differently. Reflect on what is most important to you. Remember your hard battles and those of others, and extend compassion in every direction, at least a little. Hold on to kindness, to yourself and those you encounter. Let this change you. See what happens.

I Feel Like an Amateur Around Here

We are a long way away from the end of summer break from school, and I feel like a complete amateur around here. We’ve lost any semblance of a normal schedule, and things are more than a little chaotic in the house. You would think after all these years of being autism parents, we’d know what to do.

But the state of your life is a lot like the state of your house. When you let it get out of hand, it takes a tremendous amount of energy to get it back under control. And the more of that energy you spend, the more worn down you get, which makes it harder to dig out. It’s a cycle that’s difficult to break out of.

Then as our kids get older, the behavioral goalposts keep moving. The fancy, technical term for this is ‘growing up’. We can’t expect to keep applying the same things that worked before and have them continue to work. That doesn’t work whether your kid is autistic or not. We have to grow and adapt as parents, too.

To put it mildly, this is all challenging to overcome when you’re weeks into summer break, out of a good routine, and frazzled from the ensuing chaos. This is our responsibility, though, and we feel like we have to somehow figure out what to do about it.

But as a good friend of mine often frames problems, what if it were OK to be frazzled and worn out right now? What if it were OK to feel like an amateur right now?

I mean it’s perfectly normal and understandable. We’re parents. We’re human. We’re not perfect. We’re not wired to be constantly on top of our game. We’re finite, mortal, imperfect creatures designed to just do the best we can for the ones we love. But that amounts to a lot, so don’t worry.

So maybe this week, pick something in the middle of the chaos you want to try to address, and work on that. Don’t judge yourself on anything else, or even on this for that matter. Just do the best you can toward one goal. Be easy on yourself in times like this.

Just remember, the most important thing is that you love your children. Everything else flows from that. Do small things in love, and so many good things will happen.