October 2011

What Does ‘Strong’ Mean to You?

by Tim on October 14, 2011

I’m going to ask the question in the title of this post again at the end, but I want to first bring up a few things I’ve thought about concerning what ‘strong’ means in our lives as parents of autistic and special needs children.

I’ve had a lot of conversations with people about how difficult some episode or part of parenting has been on them physically, emotionally, spiritually, mentally, or typically some combination of these. Let’s not sugarcoat things. We face a lot of challenges. Some of them wear us down. Some days all we can do is hold our heads in our hands. We are determined to overcome these challenges, but it sure would help if we had greater reservoirs of strength to draw from.

I realized that being ‘strong’ means different things to different people. In our patriarchal culture, it’s often equated with physical strength or political or economic power. Many movies and televised sports only add to the glorification of this. I think if you ask a dozen random people in public, most, or maybe all, of their responses would fall within this definition of ‘strong’.

What’s intriguing to me is that if you ask a collection of parents of special needs children, my experience has been that you’ll get a much broader array of answers. We are very aware of our limitations in areas essential to our families’ needs and at some level our own survival. Our role models are often other parents who we think are living in ways we want to ourselves, leaders in the autism and special needs community, and people who have overcome great obstacles and challenges to succeed and thrive. I’m not saying that others don’t hold people like this in esteem, but we may be a lot more likely to have heroes like Temple Grandin than we would, for example, Peyton Manning.

We do need a certain physical strength to get us through the day particularly when it comes to managing a panicked, growing, amazingly strong child in public, chasing after one running from us in a crowded parking lot, or simply having the physical endurance for everything required of us during the day. At least these are some of the reasons why I’ve been running and working out for over a year now. It gets to the point quickly where this becomes an essential part of our job description.

But we are very aware of the fact that we need a variety of emotional and related community supports from people who know what we’re going through. Those are areas in which we’d certainly like to be stronger. Fear, anxiety, anger, and despair are but a few of all the difficult emotions we wrestle with. They are understandable and natural. But I know we’d all like to manage them better. Having these emotions isn’t the issue; being ruled and even incapacitated by them is where many of us struggle the most. When we lose our grip on this, which is often, we feel weak and undone.

We feel alone in this struggle, though in reality we’re not. In fact, it’s one trait almost all of us share. We can draw strength from knowing we’re not alone. We can draw strength from knowing others understand us. We can draw strength from each other’s wisdom. And we are strong when we band together in the face of injustices that harm our children and say, “Enough!”

Whether it’s another’s insight, empathy, or just their quiet, understanding presence, these gifts make us stronger. And largely these are quiet, unheralded acts of strength. So much of this never happens in public view, but it forms the foundation of so much of our building strength.

In addition, we appreciate the strengths of those professionals who support us. Our teachers, therapists, local and state service supports, advocates, and so many others possess amazing gifts and talents and a willingness to share those with our children. No one is making them do this. They chose their vocations because this is what they love. They use their abilities and wisdom to help our children, and if this isn’t an example of strong, I don’t know what is.

We also have an added perspective of ‘strong’ from our own kids. They have many strengths, whether it be prodigious talents in certain areas or their ability and determination to progress bit by bit and enjoy success despite all the challenges they face. They teach us that strength doesn’t magically appear out of nowhere or come after a few minutes of bombastic music a la Rocky Balboa. It comes instead from piecing together small, daily acts of practice. Over time, amazing things arise from these seemingly small things. Like grains of sand, they build up and can stand against a great ocean.

Perhaps our vision of ‘strong’ is simply having whatever it is we need in order to be the kind of parent and person we want to be, or otherwise having the means to get it. We might not know what this specifically means for us right now, but we know we need something. In that case, our best bet is to begin identifying where we are struggling most and looking for ways to address that. This could be anything from developing skills and strengths within ourselves to seeking out community resources to help us. We don’t have to know exactly everything we need right now. ‘Strong’ sometimes is just knowing we need help then seeking it out and taking some control of the situation step by step.

Why did this pop into my head? I put on the last line of my Road ID bracelet I wear while running the words “You are strong enough!” I was out running yesterday and thought about them. These were the words I swear I heard in my grandmother’s voice while I was out jogging last year and felt like quitting, giving up on running and a lot of other things, because everything felt too hard for me. I was overwhelmed by everything, and I didn’t feel up to trying anymore. When I was out on the road that night, knees throbbing with every step, wanting to stop, I heard those words. They’ve stuck with me ever since as one of my most important mantras.

They are an affirmation that I can face whatever doubts I have now and whatever challenges will come next. I don’t have to be the strongest person in the world. I don’t have to be superhuman. I just have to be me, and that is and will be enough.

I know she wanted me to believe in myself and not quit because that’s what she always tried to teach me. She overcame all manner of incredible adversity. She refused to let obstacles determine the course of her life. I’ve often felt adrift without her these last two years.

In his eulogy to Steve Jobs, Seth Godin said, “It’s one thing to miss someone, to feel a void when they’re gone. It’s another to do something with their legacy, to honor them through your actions.” This is what I’ve been striving to do. I think of her brand of strong as ‘Mamaw strong’. This for me means strength of character, conviction, faithfulness to family, relentless determination, and sometimes just plain old stubbornness.

What am I getting at with all this? Here’s where we come back to the title of this post. What does ‘strong’ mean to you? When you look at your life, challenges, children, families, shortcomings, hopes, and dreams, where do you need to grow and become stronger in order to realize your vision for your family and your life? Be as specific as you can. The more specific you can be, the better you can act on this.

If you want to post your thoughts here in the comments, I know I and others would love to hear your perspective. If you don’t, I encourage you to spend some time reflecting on this. It’s helped me, and I hope it does the same for you.

And always remember what my ever-wise grandmother said, “You are strong enough!”

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There’s no nice way to say this. Our last trip to the dentist a couple months ago was traumatizing. I haven’t really wanted to talk much about it. It was that bad.

Let me preface the rest of this by saying that it had nothing to do with the dentist or the staff. Unlike our previous dentists’ office who we thought treated us poorly, we love our current dentists. There simply are some ordeals we and our autistic children have to go through that can’t be made good by anyone. Dental hygiene is hard enough for many of our children. But trips to any doctor’s office scare our J-Man into such a horrible place emotionally that I can’t describe it in words, though I imagine many of you know the kind of terror I speak of here.

If you want, you can go back and see our chronicles of dentistry in these past posts:

I dreaded this most recent visit for even more reasons than usual. Mary was recovering from her surgery and still on restrictions against lifting any weight, so doing anything with the J-Man at the dentist was completely out for her. It would be up to me, the dentist, and the staff.

In addition, they needed to pull one of his baby teeth. It was pretty loose already, but his permanent teeth were already completely in behind it, and all those teeth in one place doing different things had been bothering him for a couple of weeks. It needed to go ahead and come out. He’s already super-super-sensitive to anything even the slightest bit unusual with his mouth, and he had been even more reluctant to let us anywhere near his mouth during all this. Clearly all this added up to a formula for impending doom at the dentist.

Thrown into the mix was the obvious fact that he was several months older, bigger, and stronger than the previous visit where we were barely able to hold him in the chair. I’ve been working out consistently for well over a year now not only for my own health but for times like this when strength is essential. But there are limits to how effective this will be. There comes a point where the amount of strength we would have to exert to hold him would be impossible to apply without injuring him. I think we’re there now.

In past visits, we’ve treaded the line between surviving the dentist visit and a cataclysm. As you might expect, this was all a recipe for disaster.

One problem became obvious as soon as we tried to start. Not surprisingly, we were in the ‘special room’ where everything is toned down and kids can holler as much as necessary without upsetting the other children in the office. Whether or not the J-Man will ever care I don’t know, but it also affords him some privacy. The problem is that there is only so much space in one of those rooms. The most people we could fit on and around the J-Man was four. But it wasn’t enough, and we all knew it immediately. Holding him in the chair was one thing, but keeping him steady enough to not get jabbed by an instrument was something else entirely. Actually, it was impossible in those circumstances. His safety, and perhaps that of the dentist and hygienist as well, was at high risk.

So I gave them permission to do something I dreaded ever being faced with – putting him in the papoose board. (Link to a papoose board product page – click the Images tab for more pictures.) I felt like a horrible parent, and still do two months later. The look in his eyes all during the appointment was of complete terror. He made prolonged eye contact with me, which he never does, clearly imploring me with his eyes to make it stop. I sang to him. I put my head close to his. I did everything I could think of, though I knew it wouldn’t help. I can still hear him screaming over and over again. It makes my blood run cold to think about it.

I’m not sure I’ve ever felt as awful as a parent as I did then. I knew rationally that we had to get his dental work done, but that fact couldn’t possibly alleviate how horrible I felt subjecting him to all that. If someone had told me in that moment that if I’d allow someone to stab a knife through my hand then my son would feel OK again, I would have taken the knife and done it to myself.

Eventually, it was over and done. He was pouring sweat and smelled of raw fear. I got him in the car, and he fell asleep in his car seat. (or passed out, you pick) He sat in the recliner at home with me for a while, very quiet and withdrawn. Later in the day, he got back to normal. He is very, very resilient. I, however, was submerged in a guilt-ridden mood all day and night and into the next day. Writing this puts me back there again.

It was a horrible experience, but I’ve been trying to do the only thing I can with it at this point – learn from it. Having a couple of months to reflect on it, I think we have a better idea of what we need to do next time. Here are my ideas.

  • We need to talk to the dentist in advance of our next appointment and work out a strategy for a more successful visit. They have always been receptive to this, but it will clearly be more important next time.
  • We need to look into sedation and whether it’s a viable option for him.
  • We need to see whether there are other methods of restraint that don’t involve that papoose board but that don’t present a real danger of someone getting hurt by an instrument.
  • We should at least try social stories with him and well in advance talk about dentists via story books. It’s hard to imagine that anything will convince him that going to any doctor isn’t torture, but we have to try.
  • We need to talk to his teachers and OT to see if we can develop a broader strategy for easing his fears in medical situations. For example, they talk about medical things like doctors’ instruments in class using a toy doctor kit and a doll in pretend play.

Would love to hear your suggestions. I know this is something most all of us struggle with.

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Steve Jobs and What to Give a $@!+ About

by Tim on October 7, 2011

I hadn’t intended to note the passing of Steve Jobs here, however as I thought about it, there are a couple of things that I believe are worth noting for parents and caregivers of children with autism.

Jobs and the creatives at Apple – quite accidentally – gave us an amazing array of new tools to address many of the challenges that come with autism. Single-handedly, Jobs and Apple rendered most of the infinitely-overpriced, clunky communication devices obsolete in two fell swoops with the iPod Touch and the iPad. While many companies who shall remain nameless are still charging $8,000+ for communication devices – which not-so-coincidentally has something to do with the limit of what Medicaid will reimburse for them – they are quickly being sent off into the corner where they belong by iDevices that cost a tenth as much but do significantly more than most of these inferior, price-gouged devices. Apple created the technology that is ushering in the end of that profane nonsense. [end soapbox]

In addition, they have provided us with endlessly extensible, multi-sensory, portable tools for education that are improving the way our children learn. They have given technology to the people, the application developers have jumped at the opportunity, and that has opened up untold possibilities to change the lives of children and their families.

But there’s a more important and personal point I want to make here. So many want to understand why he was such a genius and then figure out how to emulate him. You could copy him right down to the black turtleneck and mannerisms and not succeed at this for reasons I hope should be obvious. You can’t be anyone else; you can only be you. And the goal is to be the best you possible, something Jobs understood from the beginning.

Of the myriad articles about him, a particular one caught my eye because of one sentence. John Gruber at Daring Fireball is one of the most insightful tech bloggers anywhere. In his post in which he shared a particular memory of Steve Jobs, Gruber zeroes in on a specific ability Jobs developed throughout his life that I hadn’t thought about before. He says, “One of Jobs’s many gifts was that he knew what to give a shit about.”

I want to be able to do that. This may be my new life ambition.

Jobs was able to devote himself utterly and completely to what was most important to him because he ignored everything else that wasn’t. He refused to be dragged into trivial things that didn’t advance the ideas and products he was passionate about.

He once said, “The only way to do great work is to love what you do. If you haven’t found it yet, keep looking. Don’t settle.” We may think we have to settle as parents because of the constraints we believe our lives and responsibilities have placed on us, but I refuse to believe that even though I often despair not knowing how to live differently. But it comes back to that phrase I first heard from a beloved mentor of mine many years ago: “Never settle. If you remember nothing else I’ve taught you, remember that.”

Jobs also said, “We’re here to put a dent in the universe. Otherwise why else even be here?” I know you and I feel like many – or most – days we’re just trying to survive the period of time between when we wake up and when we finally get to put our head on something soft again. The difference between my belief that we can somehow live out our vision for our lives and the hard reality of the everyday creates a painful tension we live with each day, but I refuse to surrender the hope that there’s a better way.

His mission statement for life included a combination of “do epic stuff”, “do what you love”, “never settle”, and “leave dents in the universe.” If something didn’t fit in with that, Jobs gave no time or attention to it.

For us as parents of autistic children, this is one of the lessons we most need to learn. Every day, we are crushed by endless little details. By the end of the day, we look back and realize we have no idea what we accomplished that day. And this happens day in and day out. Our lives are buried under massive debris piles of things we want to do but that remain untouched, undone, and deferred until some future we fear may never come. All this does is add to our frustration and depression.

We, too, want to do epic stuff and leave a dent in the universe. We want to do something to change the world – or at least the autistic parts of it – but if you’re like me, you feel like you spend most days just treading water or forestalling your ultimate drowning.

There has to be a better way. There have to be clues about how to change the way we pour ourselves into our daily lives such that we can make a lasting mark on the universe. We often think that if we could just push ourselves harder and do more that would solve the problem. When we are more rational, however, we know better. We’re already pushing ourselves to the brink. We are only given so much energy. We have to decide what we’re going to do with it, and we have to do so with great care.

And this is where I think Jobs’s genius comes in. It’s not like he had some unlimited store of energy. He was finite, and the number of years he had on this earth were less than most of us will have. He just refused to give his precious store of energy to crap that didn’t matter.

I spent half the morning yesterday giving emotional energy to a bureaucratic issue with some paperwork for the J-Man. The solution was simple: sign the damn thing, say whatever else needed to be said, and move on with the day. If other people felt the need to expend a lot of emotional whatever about it, fine. That didn’t need to be my problem, but I made it partly mine. I chewed on it like an old bone. None of that was necessary. I was stewing over it instead of trying to focus on doing something far greater with my life.

And we all do this, all day long. We need to be aware that we do it and then focus on taking steps to stop. Decide every day what the most important thing we want to do that day is, then do it. All this other trivial stuff be damned. If other people want to make some petty thing more than it is, let them. You can’t stop them from doing it, but you don’t have to participate. Jobs gave not a whit about convention, politics, politeness, or social niceties. Your work is to focus on what is most essential to who you are, then be ruthless about it.

Here’s something I’m going to try. List everything you’re stressed about. Then look at each one and ask, If I don’t deal with this right now or at least today, is anyone going to, 1) die, 2) take my house, or 3) suffer irreparable emotional or physical harm? Almost nothing reaches this threshold. Many of these things are simply items you and I need to act on in some way, but not in a way that gives them any more of our emotions or energy than they deserve. Do them as they need to be done, then move on.

Then list what’s most important to you. These can be personal values, goals, projects you want to work on, etc. If you’ve ever created a bucket list, then feel free to incorporate that. I’m thinking more of starting with a list of what’s most important to me in the immediate term, but you certainly will want to develop a longer-horizon view of what’s important, too. Choose some things on the list you really feel drawn to right now, then list a few specific actions you can take to get moving on them. Then start moving.

Stupid things that don’t deserve our stress suck up many times as much energy as is required to actually address them. Worrying about other people’s emotional debris as part of it multiplies the energy sucking manyfold. However, when we are working toward what’s closest to our hearts, our own energy multiplies. Do what we love and make a difference. This should be our ultimate aim in life.

Easier said than done, I know. Believe me, I am a master of not following my own words. This isn’t so much an end but a practice – a call to trying to live a better way – lining up one action after another until something amazing comes to life. Our kids do this every day, learning and developing inch by inch until they reveal something wonderful that was previously hidden from view. They already know how. Now it’s our turn to live it.

I think this will be one of Steve Jobs’s enduring legacies: To become the person we want to be we have to commit, act, devote ourselves to this every day, and never quit on our vision. If we fail on any given day, we fail. We get up, put it behind us, move on, and try again. Eventually, wonders will come to life.

What is your vision for your life? What are you going to do to make it happen? What are you going to do right this very second? Go.

“Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma – which is living with the results of other people’s thinking. Don’t let the noise of other’s opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.” – Steve Jobs (1955-2011)

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