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.

Just Do Today

It’s been hard lately. Emotionally, mentally, and physically hard. The cumulative stresses – especially the trauma over our younger son’s cancer – and just plain burnout have caught up with us with a vengeance.

Our buckets are empty. And when current day-to-day stresses and challenges smash into an empty bucket, nothing good can happen.

We desperately need a vacation, and we have no idea when we’ll ever get one. We’re fried. And we’re not sure what to do about it after over two years of through-the-roof stress and trauma on top of years of challenges. In addition to that, now that our younger son is in remission, the adrenaline that kept us going has crashed.

I know we need to ramp up regular self-care practices, but when you’re this toasted, it’s hard for that to make a dent. You just don’t feel like doing anything.

I once came across a daily readings book from Narcotics Anonymous called “Just For Today”. There it’s more a rule to live by than a title. In this particular case, the lesson is that sobriety and a better life comes and is built one day and one step at a time. You take each day as it comes and just do the right thing for this day.

There’s a lot we can learn from that. Lately, I’ve been reminding myself, “Just do today.” There’s so much going on and so much burnout to recover from that I can’t comprehend it or even stand it if I think about its enormity.

But perhaps I can just do today. And perhaps time will be my greatest ally and healer. 

For now, I’ve learned that today I can ask for help. I recently sought out a new coach to talk things out with and learn some strategies for coping with everything. None of us can do all this by ourselves. We have to learn to ask for help for ourselves, every day if we need to, if we’re going to be the parents and people we want to be.

I also learned that accepting where I am – right now – is such a huge part of it. Right now, I can say to myself that things are really damn hard. Not only is there nothing gained by sugarcoating that, it would only make everything much worse.

Say to yourself what’s true for you today. If you’re tired, burned out, angry, sad, depressed, lonely, or whatever else, if you feel like giving up, like a failure, like things are never going to get better, just admit it. There’s no shame in it. 

Say it to yourself, and then decide you’re just going to do this day. Nothing more. Ask for help. Imagine tomorrow is forever away.

Today is the only day you can live. Just do today.

10 Reasons Why You’ll Be OK

1. It’s your beloved child we’re talking about here. You will do what it takes to help them overcome their challenges. The parenting instinct has gotten our species through a zillion generations. And I tend to think autism parent instincts are way stronger than the instincts of more typical parents.

2. You can do hard things. You will learn how to do even harder things. You are now a very capable, lifelong learner, and you will gain the experience and wisdom necessary to do what you need and want to do.

3. In addition to what you gain from knowing your child, there are countless autism parents, books, and online and local resources to help you. We live in an age where there has never been more information and resources about autism and parenting available to all of us. And we live in an era where endless connections to other parents through social media and e-mail are possible in a way unheard of even a few years ago.

4. We are an army of advocates working day in and day out to make the world a better place for our children, and we are on your side. We are preparing our children for the world and the world for our children. Parents, autistic adults, teachers, therapy professionals, family members, and allies are all working to change the world. We are a force who will not quit until we do.

5. We cheer for each other. We support each other. We know what it’s like. And we are ready to lend a shoulder and a listening ear when other autism parents need us. Some days you will be the one who needs help, others you will be the supporter and cheerleader, and many days you’ll be both. Together we are a team.

6. There are so many of us that there will always be people who completely understand what you’re going through, no matter if you think you’re the only person in the world with your challenge. (You never are, by the way.) Reach out, and you will find them. And together you will figure out how to overcome your difficulties.

7. Autism brings with it many gifts. Sometimes you will be overwhelmed by hurdles. You will have any number of difficult days. But you’re going to have plenty of grateful days where you realize how much your life is being transformed by your child and their unique personalities and gifts.

8. You can learn to cut yourself some slack. Being a perfect autism parent is neither required nor possible. You can give yourself an A rather than an F. You are not failing your child; you are doing the best you can. If you remember that, you will be kinder toward yourself and a better parent as a result.

9. Your child is more able than most anyone gives them credit for. Because of this, they will overcome so much of what right now seems almost impossible. Presume competence always, and demand others do the same. You will never run out of ways to be amazed by your child.

10. There is always hope. Hope isn’t a specific outcome. Hope is acceptance; acceptance is hope. Hope lives in what is here with you right now. And be clear that accepting autism is not giving up. Acceptance lets you focus on the essential. And then when you overcome great challenges or witness the smallest of wonderful things, hope reigns. Never stop looking for everything good and wonderful.

And know that love is always available, even here in the midst of every challenge and hurdle. Acceptance, love, and hope live together. And these will see you through.

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

Extend Kindness, Grace, and Compassion to Yourself

As autism parents, we are really hard on ourselves. There’s so much pressure from day to day and week to week, and we judge ourselves when we fail to meet and overcome these challenges.

Honestly, what grade would you give yourself as a parent right now? I would bet that even though just about everyone who really knows you would give you an A, you wouldn’t. Even on my best days, I see myself as maybe a C-plus parent. Typically, it’s hard to not think I’m a big F and failing our kids.

I admit it. I’m exhausted. The last two years have burned us out with all of our medical and personal struggles. Most evenings and weekends, we hardly feel like doing anything at all. I feel like the least-engaged parent in the world.

It can sneak up on you. You look around in your state of stunned exhaustion and think, how did I end up here? How did I let things get like this? And it’s not a far trip at all from those questions to, “I’m a failure at this” and “I am ashamed of myself.”

But think about the people most dear to you. When they make mistakes, fail, do things that disappoint you, or show their thousand flaws and foibles, what do you do? To them you try to extend kindness, compassion, and grace.

Extend this to yourself, too. Please.

Brené Brown says, “Shame works like the zoom lens on a camera. When we are feeling shame, the camera is zoomed in tight and all we see is our flawed selves, alone and struggling.”

But instead of this narrow view of ourselves where we withdraw from others and community, we can zoom out and see we’re all in this together. 

Not feeling good about yourself is one of the most common traits we share. This is why we talk this out with other autism parents. We learn that we’re not alone in how we feel. We get listeners who understand what we’re going through. And we get affirmation that we’re doing the best we can.

We all have the same goal: to do the best we can to help our children overcome their challenges. But we need each other to achieve that goal.

If you think you’re somehow ‘worse’ than other parents, if you think you’re a failure, you’re not. Yes, all this can be very hard, but know that you’re not alone.

As I’ve said before, reach out to other parents. Know that your success is tied to theirs.

We cheer for each other. We empathize with each other. Through thick and thin, we are a community. We can each be instruments of kindness, compassion, and grace to each other. Community makes us both a force to be reckoned with for our children and a source of comfort to each other.

Get on social media and blogs and reach out. If you don’t know where to start, ask me. Look for people you connect with and contact them.

Social media has given us the opportunity to find friends and allies unlike any other time in history. And every time I’ve connected with them, I’ve found people willing to extend grace and comfort to me in ways I struggle mightily to do for myself.

You’re doing your best. Give yourself an A. Most of all, extend kindness, compassion, and grace to yourself. 

It’s OK If You Don’t Today

We put such extreme pressure on ourselves as autism parents. We spend so much of our lives in that hyper-tense zone of lacking the energy to do anything, not having any idea how to help our children, and feeling like we are failing them.

We could give ourselves a break by reflecting on whether something is truly important.

I find it so easy to put as much emotional energy into paying bills these days as I do into our son’s regressions. And I so readily give something my energy just because someone says I should.

After all, if I feel like I’m failing at being an autism parent, those raw and wounded places inside me are like black holes sucking in what light there is around me. I get to where I can’t see what I should do.

I’m going to guess you’re like me in that so often I draw in all the worries and fears about the future into one super-concentrated bundle of terrible anxiety. I grab everything that may or could happen, even everything that most likely would never happen, and hold it as if that would allow me to control it.

At some point comes the terrible realization that such control is an illusion. I have no more control over most of the future as I do the weather. I could despair about this, and I have more often than I want to admit.

But our younger son’s cancer forced me to change. Worrying about the future simply became too terrible. It made so many of my old worries seem trivial. It cast the most unspeakable fears into a fire I didn’t dare touch.

I had to change. And I hope it doesn’t take cancer for you to do likewise.

I wanted to tell you one of the biggest changes this forced me to make. It’s saying to myself, “It’s OK if you don’t do this today.”

It’s OK if you don’t deal with this stack of paper today. It’s OK if you don’t worry about your upcoming IEP meeting today. It’s OK if you and your kids don’t eat a healthy meal today.

It’s OK if you aren’t the parent you want to be today. It’s OK if your house is a mess today. It’s OK if you don’t clean the bathroom or the living room today.

It’s OK if you don’t think your achievements in life are what they should be today. It’s OK if you don’t deal with other people’s criticisms today.

It’s OK if you don’t deal with other people today.

It’s OK if you don’t deal with the future today.

It’s OK not to do most everything today.

If you have a roof over your head and no one is in mortal danger, you’re likely OK for today.

Practice saying, “It’s OK if I don’t do this today.” Do this at least several times a day. Focus your life down to what is most important; put things aside to deal with later.

And say ‘yes’ to what matters most to you.

Do I Really Need to Care About This?

One of the biggest ways we burn up our mental, emotional, and physical energy during the day is by either spending too much of it on things that aren’t that important or by treating everything as if it has equal importance.

We see so many things as if they are on fire. They scream for our attention, and so often we give it to them. And when we chase after all of these fires, all we do is get burned.

Instead, try to look at each one as if you are an outside, distant observer. Be neutral toward them, even disinterested. Consider them like a scientist would a piece of data or a test subject.

Then ask yourself, “Do I really need to care about this?”

Often the answer is no, especially not right now. If letting it go makes you nervous, ask yourself, “Can I just note it and let it pass on by for now?” Most of the time you can. Make whatever it is earn your attention rather than giving your attention to it by default.

If you either decide you do care about it or if you just can’t let it go, then ask yourself, “Is there anything I can do about this right now?”

I’ve found myself constantly worrying about bills, work projects, all the things the kids have been dealing with, and a whole laundry list of other to-dos. One or another of these worries gets stuck in my brain, and I roll it around in there as if it were a marble between my fingers. I have often refused to stop and put it down.

Now I try to ask myself whether I can do anything about that worry at that moment. For example, I’m concerned about paying down our credit card debts this month. What can I do about that right now? Do I need to wait to get paid first? Do we need to cut back somewhere else for a couple of weeks to be able to afford the payment?

If I have to wait to get paid, there’s nothing I can do about our debt until that happens. So what’s the point in worrying about it? If we need to cut back for a couple of weeks, I can think about one or two areas we can trim and write those down. But worrying about that whole process of debt repayment isn’t something that’s going to solve it right now at this exact moment.

A better question for all of this, however, might be, “What’s the next doable thing that would actually help?”

It’s a proactive question. Instead of chasing fires and worries, take some control over all this. Try forgetting everything clamoring for your attention, just for even a brief moment. Then you get to ask and decide what you should care about and do next.

The point is to save yourself stress, fear, anxiety, and time and instead be freer to be intentional about what you think about and do. It won’t happen overnight, so practice and keep practicing.

You can’t do everything. You can’t fix everything. You can’t solve all your problems right now. But you can free up your mind and emotions and do the next thing you can do, and then the next, and so on until you see real change in how you feel about your day.

A Rallying Cry

This is your story and mine. This is who we are.

You know fear. No, you know pure terror.

You have discovered unimaginable joys.

You feel everything. Intensely. Completely. There are days your soul catches fire. No emotion is beyond you.

You will always be parenting without a net.

But it can be done. It is being done. Every day. 

We are doing it. 

We are angry at an unjust world. We get furious that no one else seems to understand or care. We pound the dirt and fling it at the heavens hoping that there is some benevolence out there who will listen.

We balance our lives on the edges of knives. We can pull life itself out of a meat grinder with our bare hands. We’d volunteer to have our arms ripped off if it would make our children’s lives better.

We walk out into traffic to save them. We die a thousand deaths every time they fall apart. We fight back like caged animals. We are parents protecting our young.

We celebrate achievements large and small with complete abandon. We cry at a single, new word. We rejoice upon a smile. We turn into a puddle with a warm touch. We cheer with the voice of a thousand stadiums. We wear our pride everywhere.

We are fighters. We do not quit. We do not forget. We are relentless. We may end up on the ground, but we get up. Every. Damn. Time. We will not yield. We will not compromise.

We will not surrender. Not ever. 

Our faith may be shaken, but it will be reborn, however often we have to. Our strength will come from somewhere. It always does. 

When we fall over and despair that we will never be able to stand again, we gather ourselves, we push against the ground with all our might, and we make it again to our feet. Getting knocked down isn’t the story. It’s the getting up somehow, no matter what, that matters most.

We believe. We believe in our children. We believe that their future is up to us. We are their champions.

We proclaim the wonders of our amazing children, and one by one we convert the world. We speak for our beloved children who cannot yet speak for themselves. Whenever we crumble into silence, the very stones of the earth will cry out on our and their behalf until we can speak again.

I want nothing more than to tell you how this story ends, but I cannot. None of that is written yet. The pages ahead of us are blank. But I do know one thing. We have one hell of a story to tell. 

Tell your story. Tell your child’s stories. Bear witness to all the beauty, pain, wonder, adversity, and possibility.

Tell them what it’s like to savor each word your child learns to speak aloud. Tell them of every hard-fought step it took to get there. Tell them of the days you are scared mute and you don’t know how you will make it to another sunrise.

Tell them what it feels like to rejoice when your child’s face bursts with light when they finally climb over their mountains of challenges and achieve the once impossible. Tell them about your child’s smile. Tell them of your pride.

Tell them everything. Speak of the wonders you have witnessed. Every. Last. One.