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!

How Do You Eat an Elephant?

When confronted with an enormous project at work, we used to ask ourselves this question. It reminded us how to tackle any project, regardless of size.

So, how do you eat an elephant?

One bite at a time.

I’ve thought about that a lot lately given the countless hurdles and mountains that have appeared before us in recent weeks. We did the usual feeling sorry for ourselves for a while. I think you have to always give yourself space to do that.

But the reality is that we’ve had some problems that we actually have to deal with. We were already considering some major changes in our routines when some health crises and a long string of bad news struck. We had to decide which of the paths that were still options to us that we would take.

A few we had no choice over. With Mary being on disability for the foreseeable future, she has to take care of her physical needs and fill out endless piles of paperwork, the latter being a full-time job unto itself it seems. It’s not really fair to expect a struggling person to run that gauntlet, but it leaves you with two questions.

What do you do about it? And, how do you eat this elephant of paperwork?

One bite at a time.

Our house needs a lot of work, there’s the daunting challenge of out-of-school summer routines with an autistic child, I’m looking at some new career options, and so much more on top of our most pressing hurdles. I spent several days recently just being overwhelmed by all this.

But then I remembered the elephant.

I don’t have to solve all these problems today. I don’t have to fill out all these forms today or apply for all these things today. I don’t have to fix everything today. I just have to take one bite out of the pile.

When I finish that bite, I can take another. Then another.

It’s not lightning in a bottle. It’s not going to magically make everything better in a day. But that’s the point of it really. It’s a slow, steady, even relentless forward progress. That’s how everything from stacks of paper to entire social movements gets done.

There are never shortcuts. That’s the secret.

There’s a peace in knowing you don’t have to do it all today. If you need a number, pick three bites you’re going to take today. That’s not a big meal or anything. Then go do that. You might finish before the morning is done, and anything else that day is gravy on top.

Just remember not to try to accomplish things by binging. You can’t eat the whole elephant at once without getting sick. Binge working is a recipe for disaster. Take a bite – for example, clean off a surface or do some paperwork over the course of 10 minutes, or however long works for you – then take a little break. Repeat. You’ll be pleasantly surprised by what you get accomplished.

This can work for things from forms and stacks of bills to enormous life and family changes. Simply ask, what can I do right now? Then just take those bites today.

Just for today, you can do these little tidbits, even under the weight of incredible stresses and burdens. Give yourself permission to not look beyond this. This is key. You don’t have to live all the stresses of tomorrow yet.

Just do today. One bite at a time. And you’ll get there.

I Have Permission To…

So often we think we need to do things a certain way to measure up to some standard we believe the world has for us. We feel the eyes on us when we’re out in public.

We hear the words about how we and our children get more benefits than we ‘deserve’ through special education and government assistance, such as those are. Yet we know there is so much we must do to keep those meager benefits from being taken away.

And we sense the judgments within our own families about our parenting skills and practices.

It’s easy to give power to those voices and opinions. But they don’t have authority over us as parents. We have the power to direct our own lives. We have the power to say, “I have permission to…” for a lot of things.

Here are some.

I have permission to:

  • Not be perfect.
     
  • Say no.
     
  • Fail.
     
  • Succeed.
     
  • Screw up everything today and start again tomorrow.
     
  • Stop feeling guilty.
     
  • Not explain myself to anyone.
     
  • Ask for help.
     
  • Say it’s not my fault.
     
  • Turn down requests.
     
  • Cry when I need to.
     
  • Be scared.
     
  • Take several consecutive minutes to do something to take care of myself.
     
  • Go to the bathroom by myself.
     
  • Use TV or whatever to calm my child while I do something to stay sane.
     
  • Not worry about the future right now.
     
  • Take respite time when I’m offered it and ask someone to give it to me.
     
  • Read something that’s not about autism.
     
  • Not give a damn about autism today.
     
  • Seek counseling or support for myself.
     
  • Spend a little money on myself.
     
  • Tell people staring at us in stores to go to hell.
     
  • Ignore advice.
     
  • Ask for an appropriate education for my child and never take ‘no’ for an answer.
     
  • Reach out to other parents and ask for help.
     
  • Reach out to anyone and ask for help.
     
  • Not take crap from anyone.
     
  • Do nothing whatsoever right now if that’s what I need.
     
  • Ignore every standard in the world that anyone tries to impose on my child or me.
     
  • Fight for a world that accepts my child for who they are.
     
  • Put that off until tomorrow.
     
  • Be who I am, without apology.
     

You Are Not Alone

I would be hard-pressed to think of four more important words than these. And lately, these words have meant the world to me.

Last week was a disaster. One bomb of medical and financial bad news after another hit us in rapid succession. On Friday, it was such a relentless onslaught that I became almost numb. We were powerless over it.

When things go to pieces, I try to be grateful for something – anything. I try to find some anchor to the ground when everything else around me is chaos.

This week I was grateful for the words, You are not alone. I have people I can lean on. I have people who understand or will simply lend a listening ear. I have people I can ask for help.

I am not alone. And neither are you.

I can’t sit here and tell you it gets better. It is whatever it is. What is constant, though, is that you are not alone. We are a legion of autism parents and advocates. We have each other’s backs. We are out there. We are ready to help. All you have to do is seek and ask.

We all struggle. That’s one sure constant in life. And there’s something strangely comforting in that. We are all in this together.

And when disasters strike, the one thing I know to do is to ask for help and be willing to receive it. Then I go find at least one person I can help in turn. Joining in that circle of help and comfort can make all the difference in the midst of uncontrollable chaos.

There are myriad crises we have to figure out now. I don’t know what to do about most of them yet. I’m still dazed and more than a little numb. We’ll just take them one at a time.

But at least I know I don’t have to face my struggles alone. And neither do you.

We Can Do Hard Things – Over Time, With Help

As autism parents, we can do hard things. It’s just that on many days, we have such tough, high hurdles to get over. Even though we are able, it doesn’t mean that it’s at all easy.

We have our personal struggles, too. Maybe we suffer from depression or mood disorders. Maybe our bodies hurt from chronic aches and pains, or we’re seriously out of shape, eat terribly, and our health is a mess. Perhaps it’s crushing financial debt and job worries that are getting us.

As highly-motivated parents, we are wired to want to solve problems quickly, but the challenges of life, parenting, and autism defy this. This is the source of untold and unending frustration for all of us. I don’t know how to be patient a lot of the time, and I imagine you don’t either.

But here’s something worth keeping in mind. Your child can’t overcome challenges with the snap of their fingers, in a single day, or sometimes over a long time, and neither can you.

And your child can’t overcome their challenges alone, and neither can you.

You weren’t born knowing how to do this. You grow into it. If you expect yourself to have it already figured out without time, effort, or help, you’ll be miserable.

If you think you should already know how to do this, you’re on the road to doom. Shoulds have no place in autism parenting. They’ll just lead you down a terrible path. That doesn’t mean we don’t have them anyway, countless times a day, every day.

Thankfully, it’s not about figuring it all out. It’s about growing into your competence. It’s about learning and allowing the journey of discovery to unfold. It’s the art of the only kind of patience I know how to achieve – taking deep breaths, loving your child, staying faithful to the journey, and asking for help every step of the way.

Our society often places value on not needing others, of succeeding on your own without the help of many. This may be the most dangerous principle imaginable for autism parents. Knowing you’re lost and asking for help is half of what you need for success.

We desperately need each other, and by reaching out to each other and building connections and relationships, we strengthen ourselves and our families and give our children vastly better access to the resources and support they need. When we share the load, we make our whole structure stronger.

You are capable of so much. You can do really hard things. And you don’t have to do them alone. You have time to learn and grow. You have people to call on when you need help.

You got this. Just breathe. Be steadfast. Believe in yourself; believe that help is available. Believe that so much is still possible.