I will risk pissing some people off here because I think this has to be said.

The National Autism Association posted a PSA about autism a while back. Watch it and then continue below for more discussion.

Let me start by saying that, while I am tired of a great many things, after seeing that PSA I realized that I am particularly tired of two things in the world of autism right now: doom-filled ads and statistics, the former I’ve seen referred to recently as “autism doom porn.” I realize that both of these are intended as instruments for awareness raising with a public that knows little about autism. I still think they only serve to bring us all down.

1 in 110 is eye-opening. The progression from 1 in many thousand drags you into the downward spiral toward doom. 1 in 70 feels like a cataclysm.

Statistics suck. They can make the same thing seem wonderful or awful.

109 in 110 seems like a typo. 69 out of 70 sounds like great odds. Neither would do much more than leave you a little confused and scratching your head about what the big deal was. But that in itself isn’t my point.

Statistics seek to classify, group, and analyze things as objects. Those savvy to autism know what the first set of statistics above refers to. I could, however, just as easily have been referring to oranges or pretzels. Regardless, these numbers aggregate, classify, and simplify. We believe autism is much easier to understand when you sort it out like this. Of course, in the process you flatten all the diversity out of it and erase the personalities of every one of our children.

Some think this makes good TV and fundraising ad copy. At best I find that very, very debatable.

So on to my version of autism statistics. There are only two statistics that matter to me right now. I’m going to be obnoxious enough to say they should be the only two that matter right now period.

1 in 1.

1 in infinity.

If you’ve met one autistic person, you’ve met one autistic person. You haven’t met some 1 in 70 or 1 in 110. You’ve met 1 in 1.

They have a name. They have a personality. They aren’t a number. They have potential. They have feelings. They are wonderfully made. They are.

They are unique in all the universe. There has never been anyone else like them, and there never will be. They are the most precious gift of all. They are irreplaceable. They are 1 in infinity.

The other statistics may help raise money and supposedly make for compelling awareness campaigns, but they set a dangerous tone. We get caught up in this specter of doom, and that rarely does us any good. In fact, I think it’s destructive. We don’t need this in our lives. We know life can get really hard. We don’t anyone to tell us that. We need a different perspective. We need a spirit of hope and a way toward transformation.

I think these doom-filled ads work against the very changes we ultimately seek. The public have become numb to a generalized, widespread sense of impending doom. We get it from everywhere. People don’t get excited about causes where they are fighting some vague, nameless, statistical doom either.

Why do Heifer International, Save the Children, and Kiva – to name but a few – raise so much money and bring about such transformation in the world? Because you are buying a goat for a village, supporting a specific child, or helping fund a specific entrepreneur. You aren’t donating money to combat hunger or some vague, evil force in the world. You are doing something specific for one person or one village. You become involved in individual stories of transformation and hope. You become invested in their future.

When we raise awareness, we often want people to be as passionately involved in autism as we are. That’s rarely going to happen. We certainly can’t scare people there. We want everyone to join and fix the grave injustices we and our kids face. We’re asking for too deep and too vague an investment. We are the ones with all our skin in the game. The general population will never have as much at stake here as we do.

What do I think the answer is? Tell your story. Proclaim both your challenges and your pride and everything else. Speak of every joy and lament. Describe what it feels like when your child is finally able to do something that seemed impossible before. Become like the wandering storytellers of old. Share the whole, rich landscape of your lives together.

Tell your story to educate and inspire. Ask the person you tell it to for one thing, one thought, one action, one small something. Don’t ask for the world; just ask for one small step. At worst, we get one helpful act of kindness, one seed of good planted. At best, maybe we gain a committed ally and advocate. While none of us on our own can accomplish a task like “save the planet” or “fully fund disability services in every state”, perhaps all the people around us can achieve something like “the next time you see a child throwing what you think is a spoiled temper tantrum in the store, consider the child may have needs you aren’t aware of, and share a kind word or a helping hand with that parent.”

And that is how change begins, takes root, and grows. No one’s statistics will ever do that.

We need to see the 1 in 1. We need to see the 1 in infinity. We need to start there. Make a difference to one child. Celebrate the achievements of one child. Rejoice that we have been given the impossibly rare gift of each one of them. That’s how the world changes, not with this statistical doom porn.

Because each of our children is the only one like them. They only get one shot at life. We only get the gift of them in this world once. Let’s go act like that’s true.Similar Posts:

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The Decrapify Your Life project is underway. (It now has a pseudo-official name!) Clearly the need is there since it’s taken me 22 days into the new year to post this! But I have been working on my goals anyway at least.

Several of us have banded together to make some changes in our lives in 2012. You’re still welcome to join us. Just let me know (tim -at- bothhandsandaflashlight.com). We’re starting to make our way together on Facebook and by e-mail. Yeah, we’re feeling our way around in the dark trying to figure it out, but that’s how a project like this has to start.

In looking at goals for the upcoming year, one principle I’ve become enamored with is having as few goals as possible. Instead of having a bunch, not doing any of them well or at all, and then just getting mad at myself and frustrated with the cosmos, I’m going to try the approach of having as few goals as possible but making sure I do all of them. If you have too many, your attention gets scattered and overwhelmed. Choose a few, then focus like crazy on them. And by ‘few’ I’ve settled on five total for the whole year, and I am wondering whether that’s too many.

Here’s what I’ve tried to do with them. I’m patterning my goals after IEP goals – specific and measurable. But just like as parents we want to set challenging goals for our kids and assume they are capable of great things, I’m also setting the bar high for my goals for the coming year. And I made them congruous with my three words for 2012, so I really have a clear sense of my mission for the year.

However, with big goals you have to be somewhat careful or you can easily get overwhelmed. When I ran a marathon this past spring, I really tried to never think about the gravity of running 26.2 miles until the actual day of the race, and even then I tried not to think about it any more than was necessary while actually running it. I divided up training into specific miles for each run and then did them on their appointed day. Within each run, I divided those miles into steps and smaller goals. (Just run to the next light pole!) And because I focused so much energy and attention on it – by committing more fully to fewer goals – it worked. I spent most of my 37 years dreaming about that finish line. This is how I finally did it.

It is pretty crazy to think about running 26.2 miles at one time, but when people ask me how I did it I seriously say, You just show up regularly to train and take the steps over a period of many months until you get there. The process isn’t magic or mystical. You can’t run anywhere until you run the next step. That’s the key. So, I know I’ll need to break my big goals down into tasks, intermediate goals, and bite-sized chunks.

So if you want to participate at home with us, that’s my first suggestion. Create specific, measurable goals for 2012, and create as few as possible. I’d say no more than five, and the fewer the better. If you complete your few goals early, awesome. You can start on another batch then! Who cares if you’re reading this in January or later in the year. Just go ahead and do it. There’s nothing special about beginning first thing when the year starts.

I’ve mentioned this before on Facebook, but I’ve become an avid reader of Zen Habits. He’s shaping the way I look at simplifying life. I’m the staggering village idiot compared to his mastery of things, but he started out not knowing how to do this either. So I’d give him a read when you have the chance.

This is going to be quite an adventure. We’ll screw up a lot of things, learn even more, and eventually find our way. I really believe that all we need to do is commit to the goal of decrapifying our lives and then taking all the steps – one at a time! – needed to reach the places we want to end up. That combined with the support of other people with similar challenges doing it with us is a recipe for finally making some real changes in our lives.

What this will ultimately look like will vary from person to person. It has to be the right outcome for you and your family. I’m still refining the specifics of mine a bit, but here are my goals.

• Eliminate our revolving debt. By Dec. 31, 2012, all credit card debt will be 0. I won’t announce our current debt amount publicly because that seems rather risky given unscrupulous people out there, but let’s just say it’s a lot.
• Get serious about my freelance business, expand my work, increase revenue two-fold over 2011 (the measurable part), and do projects I enjoy.
• Complete and self-publish an e-book about autism.
• Donate, recycle, or throw out 800 cubic feet of stuff. (Measuring that should be a hoot.)
• Run 1,000 miles in 2012 and complete at least one marathon, and if I can find one nearby an ultra-marathon (something greater than 26.2 miles).

How in the hell am I going to do this? One step at a time equals unstoppable forward progress. You can zig, zag, stumble, go backwards a while, and stagger like a drunk along the way and still make forward progress. It doesn’t have to be pretty. No one is handing out style points. This is your life. Make it happen in any and whatever way works for you.

And I’m going to blog it out. I’m going to do this publicly and be held accountable. I’m going to document it so that at the end we’ll understand what worked and what didn’t so we can all do it year after year. We’re going to learn together and make real, lasting, positive changes in our lives.

I invite you to join me in this year-long project. I’m working on setting up a separate part of our blog for this in hopes of keeping things a little better organized. This will be part me blogging out loud how I’m doing, what I’m learning, and generally being accountable to my goals. I’d like other people to join in that process of checking in, sharing insights, and mutual accountability. I was part of a private Facebook writing group in November that did wonders for everyone in staying focused, getting encouragement, and making sure we all reached our goals. So I’ve set that up on Facebook for any of you who want to join me in the Decrapify Your Life project. Just let me know.

I’m really excited about this. There will be plenty of steps forwards and backwards along the way. We’ll screw some things up and enjoy many successes. We’ll feel like we’re failing and then discover we actually do kinda know what we’re doing.

We’re heading into uncharted territory. We’re going to have to pave the road as we go along. But where we end up at is going to be awesome. I believe it.

”Roads? Where we’re going, we don’t need roads.” – Dr. Emmett Brown, Back to the Future

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Unbeknownst to us, the following things were happening in December. It looks like Scrooge was working in shadows this year.

On December 1, a rule passed by our county that no one seemed to actually know about went into effect dictating that any family who made over 300% of some income limit (which we think is the poverty line, but no one actually seems to know this even now) would no longer be provided disability-related services for their children. Apparently this included us, though we still have no idea 300% of what.

Under these services, J has received 7 hours of developmental therapy per week. He has made enormous progress with his developmental therapist, who we think should be fast-tracked to sainthood. Originally he got 10 hours, and we found out later he should have gotten 12, but in September this was reduced to 7. We also have gotten case management services, which among a few other things essentially processes the paperwork and monitors the availability of CAP/Medicaid Waiver slots. Admittedly the latter is a tragic joke right now because the wait list is measured in several years at this point. There’s a growing dread among many of us that these slots may NEVER become available.

On December 21 – yes, three weeks after the rules went into effect – our case manager got a list of kids eligible for services, and J was no longer on it. No explanation, no warning, no nothing. This went into effect December 30. To make it worse, no one at our case management agency told us until December 28. So, the first time we knew of any of the above was 48 hours before we would lose all services. Oh, and pretty much everyone was on vacation for the holidays.

Ponder all that for a moment.

We were then told our only recourse was to file a financial hardship appeal. So here we are during the holidays, my best friend who I basically see twice a year is in town visiting, and there we are scrambling trying to fill out these forms and gather a pile of supporting documentation for our appeal. These included last year’s tax forms, proof of all our 2011 medical expenses, our health insurance info, copies of proof of residency documentation, and for good measure J’s 27-page IEP. I thought about pricking my finger and running it across one of the pages in case they needed some DNA.

We had no real optimism that this would work, but you have to do it. Obviously nothing was going to happen until January 3 when everyone went back to work. So we waited and started desperately trying to figure out what any plausible options might be. I looked at stuff around the house we could sell.

We were shocked to find out on the 3rd that we were granted a six-month reprieve. Our appeal was accepted at least until June 30th. After that, who knows. I guess our $12,000+ of medical expenses in 2011 were in some way persuasive. I suppose I should be thankful, but after all that groveling I’m feeling a bit short on dignity.

In the warped reality we live in, probably the only way we’ll get to keep services beyond that is either for the rule to be rescinded or temporarily lifted by legal order, or for one or more of us to get really sick and pile up a bunch more medical bills.

Yes we won what amounts to a proverbial stay of execution. Our future odds are pretty long, however. There are some questions as to whether our county is acting legally here, but that’s something we haven’t had a chance to explore much with anyone yet.

But there’s a much greater problem that frames the enormity and horror of this war over services and supports that affects every last one of us. Many states – ours included – are pillaging disability services budgets and cutting them into oblivion. There may be no more wait lists for things like CAP/Medicaid Waiver slots because there may no longer be anything to wait on.

These are bleak times, but we only have one choice – accept the challenge and fight. If we roll over, our children’s futures are in danger. Services lost may never be restored. I know we’re all tired, and it’s just one more damn battle to fight. We can take a little while, bemoan it, get depressed over it, stare at the wall, eat a dozen boxes of donuts, yell and be angry about it, and curse everyone we can think of.

Get it out of your system as best you can. Then get up off the floor, grit your teeth, set your jaw, and say two important words.

Game. On.Similar Posts:

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As I’ve mentioned in the past, instead of New Year’s Resolutions I do Three Words. These three words will act as both a sort of mission statement and a set of guiding principles that will focus my efforts and goals for the year. (See my words for 2011 and 2010.)

So I’ve selected my three for 2012.

Simplify – This one is making a return appearance from 2011. I didn’t do very well with it last year, but I know this is an essential part of what I need to focus on in 2012 to make a lasting difference personally and for our family. It will also be a fundamental part of Project Get Our Crap Together, which I’ll talk more about soon.

My major focus here is to get rid of as much clutter and possessions we don’t need as possible. We’ll either donate it, sell it, recycle it, or trash it. Our house looks perpetually like a tornado-ravaged landfill, and it really affects our ability to do all sorts of things. Plus, we just have a whole lot of things we don’t need, and I know there are people out there who could make use of them rather than us just warehousing it here in this storage building we call our house.

I also want to simplify my commitments. I want to be able to invest myself as fully as possible in family, health, and work (particularly work I love) and those related goals that are most important to me. I will need to learn to say ‘no’ almost to the point of ruthlessness. This will not be easy, but it is necessary.

Life has been very challenging in large part because it has been so overwhelming to me. I think ‘simplify’ is the focus that will help turn that around.

Liberate – I thought a lot about this word before I wrote it down. It has numerous layers, each of which serve a vital purpose in our family. As important as ‘simplify’ is, ‘liberate’ may be even more so.

Our recent debacle of our county taking away all of J’s non-school services and our case management services (see our Facebook page or stay tuned for a future post) was the sewage icing on top of what is driving the need for ‘liberate’. I am sick and tired of others having so much power over us and our kids’ futures. So I want to spend 2012 reclaiming as much of that as humanly possible.

But this spans much more than just J’s services. It covers many facets of our lives. We are in too much debt, and I want to liberate us from that debt and the power banks have over us. We can’t provide the kids with what all they need (e.g., preschool options for Dale Jr., therapy services for the J-Man, etc.) and there are numerous things we need to do on our house, so I want to liberate us from insufficient income.

I am often directionless – to put it mildly – in the way I spend my time and have yet to learn the best ways of getting things accomplished in the midst of chaos. I refuse to believe this is just the way it is and that I can’t do anything about it. I want to learn how I can liberate my time so I can get work done, make enough money, and still have the time I want to be a good dad and husband and be fully present to the kids and Mary.

I have for too long given my power over to other entities, none of whom ever have our best interests at heart. This needs to be the year we start reclaiming that power. Much of this will involve focusing on my freelance business and my first serious effort to concentrate on becoming an entrepreneur rather than someone who just dabbles in freelancing on the side. I have a lot to learn, but I have already started making plans and progress on this. And Lord knows I have tons of motivation now. I don’t think frugality is going to gain us anywhere near enough to help us with the ‘liberate’ project. The obvious, and I think much more effective, alternative is to increase income any way we can.

Ship – This is a lot like ‘finish’ was last year, but it’s more specific. I do plan to finish another marathon this spring and hopefully an ultra (greater than 26.2 miles) later in the year. But ‘ship’ is geared toward finishing some writing projects I’ve had in the pipeline forever in addition to actually spending some real time concentrating on this blog. My primary focus early in the year is to do a redesign of this blog and to finish a short e-book in time for World Autism Awareness Day in April. The word ‘ship’ implies not just finishing something but releasing it out into the world. It’s one thing to have eleventybillion words stashed on my computer (plus or minus a few billion), but I don’t think that makes any real difference in the world until I assemble them and let them loose.

So there you have it. If you already have your three words for 2012 and want to share, I’d love to hear them. If you haven’t, it’s never too late to choose them. The year just got started, and there’s a lot of 2012 left to work with. This is a great year to take control of some things in your life and make lasting changes. Take your time, pick three words that will make a real difference for you and your family, and go for it!

P.S. – And consider joining us for our new Project Get Our Crap Together! We’re building up quite a team to make some big, positive changes in our lives this year! Similar Posts:

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Most of our days are filled with a variety of challenges, which often come with a mix of gifts, frustrations, and everything in between. Then there are the rare days when everything coalesces into this unending day of goodness.

Friday turned into this kind of day. It started out with a string of good happenings. Mary made me cookies. I got the stitches in my back out. (Dermatologist… again.) Pathology report was clear this time (previously was very abnormal but thankfully no melanoma). I received – and immediately deposited – a nice-sized check from a client, which will go straight toward Project Pay Off the Credit Cards when it clears. We got a startling amount of holiday and regular life stuff done. I said on Facebook after that, “It’s all gravy from here.”

So it turned out there was a lot more gravy to come.

That evening, out of the blue Santa showed up at the house in the back of a pickup truck. (I kid you not! It’s the South after all.) ‘Mrs. Claus’ and a band of assorted elvish relatives had come to the door with candy. I was getting ready to go for a run, and Mary took Dale Jr. outside to see. The J-Man at first wanted nothing to do with all this, but then I saw him peek out the window and smile at Santa. I knew he wouldn’t walk out there on his own, so I carried him out to the truck to see.

He looked at Santa, then looked at me (In the eyes! Joint attention!) and said, “Santa Claus” and “Ho, ho, ho!” He would alternate between smiling ear to ear and flapping his arms, a clear sign he’s very happy. I even coaxed him into the back of the truck, and he sat sort of next to Santa on the tool box in the truck bed. Mrs. Claus said she’d arrange to get us copies of the pictures of this since we told her we hadn’t been able to get the J-Man to see Santa (the mall = the center of Hell for him).

What they perhaps saw as a simple act of Christmas family fun going door-to-door in our neighborhood really made our day. We only vaguely know them – they live down the street from us somewhere – and they have no knowledge of our kids or our family circumstances. They were simply practicing a not-so-random act of cheer and joy, and in doing so they gave us a wonderful gift. One thing autism has taught me is that goodness and kindness often come burbling up out of the ground when you least expect it.

After they left, I got a great five-mile run in under a crystal clear, star-filled sky in perfect temperatures. I was filled with visions of the J-Man’s face lighting up and his own voice telling me about Santa. (Dale Jr. is still at that age of being rather frightened of him.) I ran without effort. I even found myself laughing.

I’ve been missing my grandmother a lot – she loved Christmas and I loved spending it with her – but I always feel close to her running under the stars. I spent the evening decorating our little “Grandmothers Memorial Tree” on the mantle, listening to Sarah McLachlan, and eating from the mountain of goodies Mary made. I thought of all the Christmases of the years gone by and this wonderful day where people who were essentially strangers brought us joy, a joy our son can now give his own words to.

I understand more each year why my grandmother loved Christmas so much. It’s a time for expecting something magical to happen. It was on Christmas Day in 2004 we told her that we’d be having our first child, and I remember how overjoyed she was for us. I always felt safe, loved, and renewed at her house, especially at Christmas. Now we continue adding on to all these memories.

As time for bed on Christmas Eve approached, Mary read ‘Twas the Night Before Christmas. By the end of the second reading, Dale Jr. had fallen asleep in the living room floor under his blanket. The J-Man was sitting in my lap and drifting off himself.

This is our Christmas present this year, and what wonderful gifts they are.

To all of you – I hope that, however you celebrate them, these days bring kindness, joy, and lasting memories to you and your family.Similar Posts:

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The J-Man would like to extend a variety of holiday wishes to you!

We’ve received a gift eleventy billion times better than anything from a store – him talking a little more each day. And what a wonderful gift it has been to hear his voice!

(Click the click to continue link to open the page with the video.)Similar Posts:

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The last couple of years I’ve done Three Words instead of New Year’s Resolutions. I’ve found this to be enormously useful, especially when compared to the incredibly low bar set by the complete lack of success we have ever had with our Resolutions. This is the time when I like to review the year and look ahead to the next. But I have very ambitious plans for 2012, and I’d like you to be a part of them.

To give you some idea what this has been about, in 2010, my words were: proclaim, connect, and bamboo. (See more explanation here.) It turned out 2010 was the year of The Great Burnout. The first half was pretty awful; the second half began a personal revolution. It was definitely a tale of two years.

In 2011, my words were: renew, simplify, finish. I feel like I hit 2 for 3 this year. ‘Renew’ was about continuing my work on my personal health and fitness that started after The Great Burnout in Summer 2010. I see this as having been a great success this year. By the time 2011 is over, I will have run close to 900 miles! I’ve maintained my 25-30 pound weight loss, I’m wearing clothes 2-4 sizes smaller than when I started. I feel much better. So, I win!

‘Finish’ has been a mixed bag, but I’m going to give myself the benefit of the doubt and call it a victory because I rocked some first-time, big-time goals this year. I finished my first marathon in March, a lifelong dream and Herculean project considering where I started just eight months before that (i.e., with my fat ass on the couch). I also participated in a collective writing challenge in November in which I wrote 50,394 words in 30 days. (Some of those appeared on this blog. Others will appear later. Even more others are for books I’m working on.) So on these two achievements alone, I’m calling it a success. And I’ve had other, smaller successes along the way. I had wanted to do more, but I’m giving myself credit for some things well done.

Simplify, on the other hand, was a pretty big failure. We had a lot of rough patches this year. The energy required to simplify our lives got swallowed up by health crises and lots of personal things. But this has turned out OK. I am ending this year with a much better idea of what is needed to complete my simplify goal. So, I am carrying that over to 2012.

I made some big changes in my life these past 18 months. I did it by focusing intently on a small number of ambitious goals, committing myself to working on them consistently, and taking things one step at a time. Now I’m really going to up the ante in 2012.

I haven’t decided on my official three words for 2012 yet – I still have two weeks! – but I know it will incorporate ‘simplify’ in with my other goals. I’m still working on how to express all this in the three-words paradigm, but regardless, I am saying that 2012 will be the year we get our crap together.

And I am inviting you to join me in that quest. A radical life change is something a lot of us desperately need.

If there is one barrier standing between us as parents of autistic kids and a sense of being successful at parenting and managing the rest of our lives well, it’s the chaos we experience every day and our present inability to cope with it. We don’t have enough time or money, we are incredibly stressed all the time, we are scalp-deep in fear, our health is terrible, our to-do lists are miles long, our homes are an absolute mess, and we simply don’t think we can survive all the demands on us. Many of us think it’s just not going to get any better. We are already going all out, we are exhausted, and we can’t give any more than we are right now.

The equation we usually operate within seemingly only allows us one variable we can control – the amount of effort we pour into our daily lives. But we hit that point where we either can’t put any more effort in or we reach the conclusion that no matter how much energy we expend, it won’t really make that much difference. And we’re pretty much right. So there’s really only one way to proceed. (Hint: giving up ain’t it.)

Throw the equation out entirely and start over with a whole new way of doing things.

It’s obvious we do have several constraints. Some of this chaos comes from things we cannot really control. However, a lot of it is within our grasp to do something about. The question is, how?

I don’t exactly know yet, but I am challenging the prevailing idea that a life of feeling overloaded and overwhelmed is just how it has to be for us as parents of special needs children.

I’m going to state something I now believe, and I’m going to state it without any proof whatsoever. As a matter of fact, pretty much all logic says it’s likely wrong.

I believe we can triumph over the chaos, be great parents to our kids, and live the kinds of lives that make a difference for our families, our communities, and our world.

And I want to prove this is possible. Like I said, I don’t yet know how to do this. As a matter of fact, I don’t yet know much about how to do it. But I’m going to find out. We’re going to discover the way to achieve this as we go along.

And I want as many of you who want to participate in this experiment to join me. I want us to show the world it can be done.

I’ll post more details about how I plan to set all this up in the very near future along with my initial ideas. One major component of this is that I’m going to blog it all out. I’m going to do this publicly and be held accountable to my goals and progress. I’m going to document what we do in our house and what others participating discover along the way so that at the end we’ll understand what worked and what didn’t so we can all do it year after year. We’re going to learn together and make real, lasting, positive changes in our lives.

This will be a community effort – no membership fees or anything like that. All you’ll need is the commitment to see it through. If you are interested to joining me in The Year of Getting Our Crap Together and making some big life changes next year, e-mail me at tim@bothhandsandaflashlight.com.

Hope everyone’s holidays are going well! More soon.Similar Posts:

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• Lessons from the Road – One Year Later
• Burnout

In five minutes, you can make a difference in the lives of a lot of families.

Go to the A Diary of a Mom blog, read her post, and act. All you have to do is click and send a message to your Representative in Congress. It’s that simple, but it will make a huge impact.

Military families should have access to autism-related therapies as part of their health care. Imagine being deployed somewhere across the planet and worrying about your child getting the care they need. I get upset just being at the grocery store for an hour worrying about my kids. Now imagine being 10,000 miles away for a year or more. Imagine being moved from place to place every couple of years. I can’t imagine how hard all this is.

But you can do something about it. I’ve already contacted my Representative. It took me five minutes. Take five minutes and join us in this effort.Similar Posts:

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• Sensory Processing Disorder and the DSM-V – Call to Action (Urgent Update!)
• Action Alert x 2! The Stimulus Package and Funding for Disabilities Services
• Action Alert! Stimulus Package and Disabilities Funding
• And Now We Will Hold You To It
• President Obama and Autism
• URGENT ACTION ALERT! Special Education and Disabilities Funding on the Chopping Block (Updated)

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 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.Similar Posts:

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“A journey of a thousand miles begins with a single step.” – Lao-Tzu

Today I achieved something momentous, and I almost missed it. I completed my 1,000th mile since I decided to start running again and taking control of my health in August 2010. I’ve run well over 800 of those miles in 2011, including a marathon in March. Just to give you some idea, a thousand miles is approximately the distance from New York City to Daytona Beach, Florida, and farther than the distance between New York City and St. Louis, Missouri. To which I thought to myself, Holy crap! I can’t believe I did that!

A thousand is certainly a nice round number, but in light of Lao-Tzu’s quote, it means something more to me. Today I completed a circle, and now I get to start a new one.

With over a year’s worth of perspective, I better comprehend what a deep mess I was in last year. You can read all about The Great Burnout, but the short of it is that I was physically and emotionally exhausted and in trouble. It was a real low point in my life. It was either do something or fall apart. I am obviously glad of the choice I made. Little did I know where it all would lead.

I remember very well that August day last year, a couple of days before our wedding anniversary as a matter of fact. I laced up a clunky pair of running shoes, strapped on my iPod, and headed out the door for Week 1, Day 1 of the Couch-to-5K program. It primarily involved a walking warm up, alternating 60 seconds of running with 90 seconds of walking for 20 minutes, a walking cool down, and beaching myself on the couch after the effort. I felt like I weighed every bit of the almost 235 pounds I was then. I plodded along slowly and completed the workout in one piece. It was a manageable effort, and I felt satisfied. I had started, and that, it turns out, was the first step on an amazing journey.

The workouts got much harder. All I wanted to do was complete the 5K autism run that October with a goal of finishing in under 30 minutes. My knees started killing me. I fell back into a despair. But I knew I couldn’t quit. Much more than a 5K was on the line. I was on the line. I told my body I was taking a few days off, but then it was on, regardless of the pain. I don’t normally recommend running in that much pain, but my situation called for desperate action. I pushed through it, completed my training, and eventually finished that 5K in 28:52, with a knee that looked rather like a large grapefruit. I didn’t care. I felt like I was coming back for good.

One thing led to another. My runs got longer. Then one day while on a long run, in a fit of pique, inspiration, or sheer insanity – or all of the above – I decided to set the biggest goal I’d ever thought about going after. I decided to complete a marathon three months from that day. This past March, eight-and-a-half months after I started running again, I crossed the finish line and completed my first marathon.

It is true what they say. The finish line of your first marathon is a transition line for your entire life. You cross over, and your life is never the same again. And it hasn’t been. It showed me that if you keep taking one step after another, anything is possible.

That’s what the J-Man first taught me. His life and growth are a series of steps – some small, some enormous leaps – each hard-won. No particular one may be all that glamourous or noteworthy all by itself, but when slowly but surely added together, they create magic. This is one of the wows of autism. And for me personally, I’ve discovered this is one of the wows of life itself.

I have tried to apply what our J-Man has taught me to my health and fitness, to my work, and to my life. It’s working. I think I get it now. I may be a slow learner, but I have an excellent teacher.

I feel more confident in adding new and harder running goals, working to get our lives in better order, and growing my work and hopefully my income, too. I feel like I have some idea what the heck I’m doing now. Our J-Man showed me the way to believe again.

There’s no magic plan here for you to follow. There’s no checklist to fill out and work through. It’s not quick or easy. You can’t make an infomercial out of it. You most likely won’t get results any time soon, but you will get them. You just decide what your heart wants most, and you go get it. You go outside your proverbial or literal front door, you take a step, then another, and you don’t quit until you get there. There will be setbacks and detours, you will often doubt whether you can do it, but if you keep your eyes on the goal and never quit, you will get there.

I made that journey of a thousand miles. It taught me enough lessons to fill a book. And now I get to begin another journey. Where it will take me next will be beyond anything I can yet imagine. I know it. So today I take that next, single step.

So go take your step. Don’t wait for anything. Right now. Go.Similar Posts:

• Diagnosis Day and a Tale of Two Marathons
• Lessons from the Road – One Year Later
• Today I Was Strong Enough
• My Three Words for 2011
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• 2012 – An Invitation to the Year of Getting Your Crap Together
• Goals for 2012

Speak your mind — even if your voice shakes. – Maggie Kuhn

Our J-Man is starting to string syllables together. Not many, but he’s doing it. He’s slowly but surely doing it without prompting. It rarely exceeds three or four halting words, but he’s doing it.

This feels like our version of the moon landing.

After so long doubting that he would ever really talk, as I was pulling into the driveway the other morning, for the first time something struck me. I started crying in the car. I believe it now. I really believe it. He’s going to talk, and he’s going to tell us about wonders we never imagined possible.

Even if he never did talk, would it change how dear he is to me, how much I love him, how much I will cheer for him, how much I will fight for him, how awesome he is and will be? Not one bit.

But I see how hard he works at trying to communicate verbally. I see him get so frustrated and upset at being unable to get his point across. I want to know how he feels, what he thinks about, how he sees the world. I want desperately to find some way to unlock his voice. I don’t care if that’s via his voice box, an iPad, or something else. But I feel him trying to show us how much he wants to figure out how to use his own voice. The more Dale Jr. talks, the more amazing things I realize he has to say. And I feel more like a failure as a parent that I haven’t found a way to help our J-Man do the same.

Recently he has been scripting some. He’s stringing together sounds, syllables, and approximations to repeat things he hears, often from kids’ shows he likes such as the “Here’s the Mail” song in Blue’s Clues and the intro song to Pinky Dinky Doo. These are motivators for him, and we are all about those especially since so little historically has been a strong motivator for him. They are familiar, they give him something to focus on, he can use them to practice sounds, and most of all, they make him happy.

I know we all have kids spanning the entire communication spectrum, so to be clear, he’s not suddenly uttering these crystal clear sentences. Some words are shortened – some to the point they sound like rapid, breathless speech. Some of his syllables vary greatly in length and use stresses you aren’t used to hearing. His inflections at the end of words may be all over the place, though they sound almost melodic. But you know, it doesn’t matter how he does it because there’s no one ‘right’ way. This is the purest music to us.

We were talking with his speech therapist recently, and we were all rejoicing that he’s started experimenting with these inflections and different intonations. He’s trying to close off words and say all the sounds in the word, not just the first syllable or two. He works so hard to get it all out, and now he’s staying with it longer and trying to finish the words he starts. He’s known for his clipped, monotone syllables when he does speak. He’s creating his own verse now with rhythm, tone, and meter all his own, and he continues to experiment and improvise.

What he’s doing now sounds like jazz. No, it is jazz.

He experiments with the notes. He is unbound by the stress and unstress of our so-called speaking. He is finding his own way. He is making it up and discovering it as he goes along. We can’t make his mouth, tongue, throat, and lungs make the sounds. He is the musician here. We can try everything we can think of, but so much of this is his journey of discovery. And he’s doing it.

His syllables sway and dance haltingly like middle schoolers at their first dance. He takes verbal steps slowly, carefully, daringly like a toddler, but he keeps at it, laying out one syllable after another. He lines them up like whirling dervishes, dreamy sloths, or slippery snakes, not going where he wants them to yet, but indeed they are going somewhere exciting.

And like a crossword, enough clues are now filling in that it seems bit by bit to be getting easier for him. Eventually there’s a tipping point where the momentum shifts in your favor. Maybe, just maybe, we’re finally there. Slowly but inexorably, it’s happening.

He sees everything around him, feels entire constellations of emotions, has wants and needs, has opinions and ideas, and has untold riches to share with the world. He may experience some or all of these things very differently than most of the rest of us, but that’s what so wonderful about it. What he sees and feels and thinks is unique in all the universe. I want him to be able to share that with whomever he wishes to.

And now these little rays of sunshine are poking through. It’s going to happen.

I see his face beam when he does get the words out. The light bursts forth from every pore in his face. I see his whole body rejoice when he is heard and understood. If there is anything that makes my heart sing more than seeing this in one of our children, I don’t know what it is.

And most of all I see it in his eyes. He now believes it, too. It’s going to happen.

I want this as much as anything. I want him to believe in himself. I want him to know that he can find a way to do whatever he seeks to do, no matter how long it takes. Forget however long it takes anybody else. I want him to know that doesn’t matter. This is his journey of exploration and discovery. He may have to take paths less travelled, or ones not travelled at all. He can blaze his own trail through sheer force of will. There’s magic out there to be found.

I remember all the days trying to get more than ‘kuh’ out of him (the sound that once meant anything and everything). It took months of work day in and day out to get just one new sound. I remember having no idea how he’d ever find ways to communicate and how we’d ever be able to help him tell us what he wants, needs, and thinks.

But slowly and surely over these years, it’s happened. One syllable at a time, he has pulled himself up this Super Everest. I’m still not sure how all this will turn out, but he’s made a believer out of me. He has that effect on everyone.

After so long, I believe it now. And we get to spend the rest of our lives discovering everything he has to say. How amazing is that?Similar Posts:

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• Many Ways to Say ‘I Love You’
• A Tale of Two Speeches
• Word-filled day! (No April Fools’!)
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• My Name is (WHAT?)
• And colors too?!

I was asked by Help! S-O-S for Parents to be part of a team to review Pajaggle, a new game for ages 3 up. To access all reviews, please visit Pajaggle: A Blogger Review. My review follows below.

Their web site describes it as “Pajaggle™ (pa-jag-gul). The game that thinks it’s a puzzle.” And at one level, that’s essentially all it is. But really it’s a lot more than that, and I thought it was a blast. I was asked to consider particularly whether I thought Pajaggle was appropriate for autistic children. On that point, I’d say “it depends”, with some explanation below. But first, let me answer “What the heck is Pajaggle?” in my own words, especially since it will help me explain how I think it would work with autistic children.

Pajaggle has 61 pieces that you place into their respective slots on the Pajaggle board. That’s really it in a nutshell. But it’s deceptively challenging. Many of the pieces look similar to each other, and the variations between them can be very subtle. The spaces on the board for the pieces to slot into are an exact fit. And I really mean ‘exact’. In many cases, you’ll think you found the correct piece, but you didn’t. It’s not unusual to try to stick a piece into a slot, figure out it’s the wrong one, and then it gets stuck (or ‘Pajiggled’ in game lingo). Thankfully, they provide a separate doohickey that serves to pop pieces out of slots with little fuss (not surprisingly called a ‘Pajiggler’).

Here’s where they kick the complexity up another notch. Some of the pieces have slots within them for another piece to fit into. So some pieces just by themselves don’t actually fit into any slot on the board. They fit within another piece, which then fits into a particular space on the Pajaggle board. When I told my wife that as we were filling in the board together the first time, she said, “Oh, [expletive deleted]. Seriously?” We both laughed.

If you want to time yourself, Pajaggle comes with a digital timer. The first couple of times I solved the board, it took me forever. I was glad I didn’t time myself as I didn’t need that mark against me that day. But you know you’re going to use the timer eventually because you can’t resist, and it’s essential to the competitive, multiplayer games.

Admittedly the sample size of autistic children I considered in thinking about this review is pretty small, but I did talk with a couple of teachers along with some parents and we couldn’t think of any autistic kids we knew under age 7 who would be able or willing to sit and solve an entire Pajaggle board on their own or even with help. That said, if you gave them a partially filled in board and had them fill in the rest, that would be an option for some of them.

Our J-Man (who is 6, by the way), would mostly just stare at the board not really knowing what he’s supposed to do with it, or he might just line up or spin the pieces. We’d need to figure out how to structure it, which is hard to do with that many pieces.

So, its 61 pieces seem like too many for most younger kids. Perhaps if there were versions of the board with half that many pieces, and those pieces differed from each other a bit more than they do now, I think they’d be on to something for the younger kids.

If I could sum up in one sentence which kids I do think would respond well to Pajaggle, it’d be this. If your child enjoys puzzles and has a good attention span for them, has strong recognitions of shapes, can detect subtle differences between similar objects, and can do puzzles of two or three dozen pieces or more, then Pajaggle seems like an obvious choice to me.

This is one of those games that both parents and kids can enjoy, too. I thought it was a blast. If you dislike visual puzzles, then you might not care for Pajaggle, but otherwise I think most people would find it fun. It’s quick enough to do – somewhere between a few and somewhat more than a few minutes – versus spending hours or days working a jigsaw puzzle. Think of it like a quick brain pick-me-up if you play on your own. The possibilities for fast-paced multiplayer games are plentiful. Not surprisingly, we’re not party people, but I can see this being a great game for get togethers.

If you know of a child who likes puzzles (especially if their parents do too!), then I think Pajaggle would make a great gift. At $30, it might be a little spendy for some, but it’s fun and the variety of games and activities you can do with it to me make it a good value. You can purchase Pajaggle on their web site at http://www.pajaggle.com.

Disclosure: I received this game for free for purposes of this review. Similar Posts:

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• Review and Giveaway – Love You to Pieces

To my friend and fellow wanderer in this wilderness,

I wanted to write you this letter because I know you’ve been clinging to the end of your rope, digging your fingernails into jagged holds until they break and bleed, desperate to not fall. I know you’re so damn tired you can hardly stand anymore. I can’t imagine how scared you are every time you leave the house wondering whether this is the time he gets away and never comes back.

I know the bills wash up like tsunami waves against your doors and sometimes all you have until you get another paycheck is the change lying around your house and what little room is left on your credit cards. I know what you once had but gave up because that’s what you knew had to be done to be the parent he needs you to be. I know the heartache and hurt seeps up out of the ground nearly every day threatening to drown you and all you love.

The fact that you are still here is a testament to your strength. You are relentless even when you are on the ground exhausted. The ragged marks where you clawed the ground, the tracks where your knees dragged, they proclaim the tenacity in your heart. When everything screams at you to quit, you don’t. Every time you thought you couldn’t take any more, you bore down and kept fighting. You are the lion protecting her young. You are kind and generous, sometimes to the point of giving away too much of yourself. Yet when the odds pile up against you, you know how to rip the f&$#ing heart out of life and stomp on it.

You inspire me. I wanted you to know that.

I know that doesn’t help you all eat or pay bills. I know nothing I have said or could say will change much. But I wanted you to know that you are enough, just like you are right now. And you will be enough for whatever lies ahead.

I know you likely don’t believe this, but we believe in you. You inspire many. Many of them – the ones who know the goodness and strength of your heart – would walk to the very edge of doom and beyond with you.

I am not saying all this to blow sunshine up your shorts. That’s not my way, nor is it yours. I can’t take any of this heartache and struggle away from you. I can’t say when or if it will ever stop. We can stand with you no matter what, but no one can stand in your place. This is your cross to bear and ours. There are many steps in this journey we each have to make on our own. For that I am sorry. I would fix it if I could.

I want with all my heart to tell you all of this will turn out OK. I wish I could tell you all this wandering in the wilderness will end someday and we’ll arrive in some land – promised or something else – where we can stop being afraid all the time. We know the only promise is the one we’ve made and strive to make again every day to our children, our families, and ourselves, and somehow this has to be enough.

I know you don’t believe this either, but you kick ass. That’s your gift. You have plenty of others, but every wonderful talent you have feeds off that. You’ve stared down hell and walked on. You’ve picked yourself up a thousand times. I know you will keep doing it as often as it takes. And every time you do, your generosity never wavers. On determination, guts, and compassion alone, you will make it.

I know you have to face all this while dragging the accumulated burdens of the years behind you. But know that you are a survivor. No matter how many times that challenges and circumstances have knocked you to the ground, you have been and will always be a survivor who stands, fights, and kicks butt.

Regardless of what it takes, you are enough. And we are forever your friends in the journey.Similar Posts:

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A while back, we were at a crisis point with our J-Man’s sleep. It would take him 2-3 hours to go to sleep at night, which usually resulted in him going to sleep between 10-11PM. He was completely unable to calm himself down at night. We’d look on the video monitor, and he was essentially doing the equivalent of breakdancing in his bed, bouncing off the sides of the bed and up and down on the mattress. He was hollering, squealing, and screeching a lot, typically the sounds of being overstimulated and too overloaded to relax at all. Eventually he’d pass out from exhaustion and sleep. This was affecting everything from school to life at home.

He never has been a great sleeper, to put it mildly. He didn’t sleep through the night until he was 18 months old, and even then we endured long stretches where he’d get up at least once or twice a night or get up really early. There were countless nights where he wouldn’t go to sleep unless we were in the room holding him. We went through long periods of it taking herculean efforts just to get him dressed and ready for bed, let alone get him to sleep.

It started getting better, and we got to where with some confidence that we could expect him to make it through most of a decent night. Then we hit that patch a while back where he was just completely unable to put himself to sleep until he passed out from exhaustion. He was doing poorly at school and at home, he was unable to regulate himself much at all during the day because he was too tired to cope, and of course we were all on the edge of insanity. It was a really grim time around here.

We knew we had to do something and soon. If you aren’t getting sleep, everything else will go to hell. Sooner or later, you will break. We didn’t know what we should do, but we were ready to consider just about anything at that point.

One of the things you won’t see me do much is talk about or advocate supplements. I personally take a typical assortment of things (e.g., multivitamin, fish oil, probiotics), but I take the supplements market with a lot of skepticism. The rigors of testing and science in general are regularly missing when it comes to these largely unregulated products. We give our J-Man much the same kind of things: multivitamin, probiotics, calcium (since he eats almost nothing dairy or anything else with calcium in it), and a green superfood powder that is about the best we can do right now for vegetables since he refuses to eat them. It’s not the same as real food, but it’s the best way we can improvise at the moment.

All sorts of people gave us advice about pills, supplements, and medications, many of which I found rather dubious. So that’s the perspective we brought with us when looking at our J-Man’s sleep difficulties. Bottom line is that we knew we had to do something or we were all going to go crazy. Sleep is the foundation for everything in daily life, and no one was doing well without it.

I’m not really spoiling the plot to jump ahead and say that we settled on using melatonin, which has worked well for us. Before we entertained trying something like melatonin or something in prescription form like a sedating-type mood stabilizer, we tried everything else we could think of. We aren’t opposed to medications by any means, but since our J-Man is minimally-verbal, it’s really hard to know what effects medications (or much of anything we do) specifically have.

I don’t like experimenting without some means of understanding the effects of what we do. I’m a pretty analytical type. I like knowing how things work and why. I bring this sort of process to bear when we attack problems like sleep.

Here are non-supplement/non-medication things we tried over the years that worked to varying degrees. I do think it’s worth experimenting with these and similar techniques before giving your kids any supplements or medications.

• Structure your nighttime routine. Do the same thing every night when getting ready for bed as predictability itself is often calming.
• Institute a standard time for bed. This is true for most kids and adults whether they’re on the spectrum or not.
• If your child likes water, try a nighttime bath. A nice, warm bath can be very relaxing.
• Look in your child’s bedroom for sensory violations, and don’t forget the fabrics they wear to bed. If anything seems bothersome to your child, eliminate it and see what happens.
• Try a white noise machine if any sudden noises wake your child or keep them from going to sleep. Many find white noise machines calming regardless.
• Look at diet, particularly in the afternoon and evening. Are they eating things that could keep them awake (e.g., spicy food, high in fat), eating a lot before bed, or drinking things that inhibit sleep (sugar or caffeine)? Are they allergic or sensitive to foods or drinks that would then upset their sleep? Are they experiencing silent reflux?

Be prepared for these changes to be a battle at first, but stick with it. One or more of them may pay off. Also don’t forget that if your child gets out of bed if they can’t sleep, make their room safe. Sleep deprivation can be very agitating.

If all this fails or if it stops working, consider these medication type interventions. We started with melatonin, which is an over-the-counter sleep supplement rather than what I’d consider medication. It has proven sufficient for us right now. It may not remain so, and we know that. When or if the time comes for us to adjust what we do, we will attack the problem then.

The first few days didn’t go too well, but that did pass. This isn’t unusual. At first, he’d wake up in the middle of the night, and it was really unpredictable about what would happen after that. He might go back to sleep after a while, or he might have just stayed up for good. We had this sense “Oh, crap” feeling about it when all this happened. We worried that we were trading off him taking forever going to sleep for him going to sleep quickly but waking up at 3AM – essentially the same amount of total sleep shifted backwards three hours. Thankfully after a week or so, things stabilized. He was going to bed pretty quickly and getting up within reason of a normal hour. (6:30-7:00 AM plus or minus)

Some parents we know have reported undesirable side effects that don’t go away, though. One reported that their child had night terrors upon taking it that went away when they stopped. Others have said the problem of time shifting their kids’ sleep (going to bed earlier and getting up earlier) rather than getting more sleep didn’t go away. Some parents found their child got more and more resistant to the effects of melatonin as time went on. Our J-Man seems to have had a more unusual side effect. His bowel movements changed for quite a long time, though now they are getting closer to normal. I can’t say for sure if it’s from the melatonin or why it happened, but it seems likely they’re somehow related. This hasn’t proved a big deal for us, though.

This past week, he has been getting up very early again – about 5AM. We can attribute a lot of this to the time change, which is always the bane of our existence. We have started to wonder whether the current dose of melatonin isn’t working as well, but we’re taking a wait and see approach about that.

Most everyone starts with the 3mg dose. Melatonin is available at most big box and drug stores and is very inexpensive. I know some have bumped up to 5-6mg and/or have ended up supplementing it with a prescription medication. The 3mg remains pretty effective for us. I’ve heard mixed reactions to time release melatonin, some saying it works out that the dose is never strong enough to get or keep them asleep.

Melatonin is definitely one of those “your mileage may vary” products. It is generally considered very low-risk, so as experiments go this should be one you can do with less anxiety. However, for children under age 5, I’d suggest being more cautious and going over this carefully with your pediatrician, which really you should do regardless. I don’t know what the minimum age is – or if anyone knows – but as a rule, the younger the child the more careful you should be.

[Edit: 11/14/11 - The day after I posted this, I saw this article "Genetic studies probe sleep hormone’s role in autism" about a study finding much lower concentrations of melatonin and the enzyme that produces it in their autism group vs. their control group. Very interesting!]

If you try melatonin and it doesn’t work, you may want to consider prescription medication. I know many families who have gone this route to varying degrees of success. Many meds that normally aren’t used for sleep disorders do work for autistic children for reasons no one quite understands. While off-label use of prescription meds is rather common among autistic children, it’s still pretty confusing to parents and medical professionals, too. There indeed are meds primarily for mood disorders that are traditionally used for calming and sleep in neurotypical people that also work for autistic children. You should be very careful with these in my opinion and not use them without caution and close supervision of a qualified medical professional, particularly a child psychiatrist who specializes in autism.

I personally from experience would not recommend using psychiatric type meds under the direction of a pediatrician or general practitioner. I think it’s critical to find a specialist in both autism and pharmacological interventions. These are not meds to screw around with, and it’s rare that pediatricians have the specialized knowledge required to manage medications with autistic children, particularly when many specialists don’t yet understand how or why many medications work with our kids either.

Standard disclaimer that you should always use supplements and medications under the direction of a qualified medical professional. Melatonin is one of the safest and natural options available for helping your child sleep. I wouldn’t say it’s been a ‘wonder drug’ like some make it out to be, but it definitely has given our son a number of improvements to his sleep that have made life easier on everyone. We certainly give it a thumbs up.

[Thanks again to Danette at S-O-S Research for including this post in this month’s Best of the Best series on ”Medications and Their Use with Special Needs Kids” edition. Starting November 15, you can see the entire collection of posts via that link.]Similar Posts:

• The Fish Oil We Use
• Seasonal Affective Disorder and Autism?
• Omega-3 Watch – Day 1, Take 3
• Omega-3 Watch – Day 7
• Fish Oil and Omega-3s – The Sort of Final Verdict for Now
• Are You Smarter Than a Four-Year-Old?
• When the Only Thing Routine is the Lack of Routine

Dear Friends,

Last year, many of you wonderful, amazing friends donated to help fund our local YMCA’s Camp G.R.A.C.E. (Growth, Recognition, Achievement, Character, Encouragement), a summer camp program for autistic youth. And as an added bonus, you helped turn me orange to celebrate our fundraising accomplishments!

This year, the fundraising needs for the camp are as great as ever. However, I can’t offer hair dyeing or anything else like that as an incentive for you to give this year. I’m hoping you’ll still give even without the hair coloring. As many of you know, we’ve had a chaotic few months at our house. Mary had a very difficult year health-wise including major, emergency surgery and several weeks of recovery. Life is beginning to return to what passes as normal here, but a lot of catching up to do and a number of urgent priorities mean we have less time to raise money for Camp G.R.A.C.E. than I had hoped. The deadline is November 9th!

Our J-Man had an amazing time at camp this past summer! (See pictures below!) We weren’t sure how he would react given that it had been a full year since he was last there, but from the first day we could tell that he remembered what a great time he had as he just walked right in! Those of you who know him know that this is no easy feat for him!

Not only were we so proud of his accomplishments and success at camp, Camp G.R.A.C.E. also proved a godsend to us as Mary’s hospitalization started right in the middle of camp. They bent over backwards to give our J-Man a good, affirming, positive two weeks in the midst of all the chaos going on at home. He flourished there this year, and we have the awesome counselors and staff of Camp G.R.A.C.E. to thank for that!

But all the supports, equipment, and staff necessary for the camp cost money. Camp G.R.A.C.E. provides extra assistance and accommodations to our children because of their many complex needs, with an average of one counselor for every two children. Even after so many generously volunteer their time and resources, it takes significant funding to create and staff a camp with trained counselors to address these needs. Camp G.R.A.C.E. does everything possible to keep costs down for families. From there, they rely on generous donors like you.

During this year’s YMCA We Build People campaign, Camp G.R.A.C.E. needs to raise $20,000 to meet its goal for 2012. Your support toward that goal will mean that dozens of autistic children and their families will be able to afford a camp experience next summer like our J-Man had.

For many of these families, medical and therapy bills and the shaky economy leave little, if any, money available to go toward positive experiences like Camp G.R.A.C.E. And this is heartbreaking. Simply put, your gifts make sending our children to camp possible. Because of you, these awesome kids can have the same opportunity to go to camp and have the same memorable experiences as other children.

100% of your donation goes directly to our youth programs and provides discounts and scholarships for autistic children to come to camp. So you can donate knowing that every penny is going to help kids have a great time at camp next year with amazing counselors who love and care for them so much.

There are two ways you can donate.

1. You can donate online. I put up a separate page on where to go and how to complete the online form here. If you donate online, make sure you e-mail me that you did. This makes it easier to track our fundraising totals and thank you properly!
2. You can donate by check or pledge. I can fill out a card with your information on it and turn it in to the YMCA. Just e-mail me at tim@bothhandsandaflashlight.com if you want to do any of the following. To send a check, let me know and I’ll give you instructions and my address. The pledge card also gives you the option to be billed later for your gift or to divide your donation into a pledge of four credit card payments. I’m more than happy to fill the card out for you!

But our fundraiser ends November 9th, so please donate soon! Every dollar makes a difference!

Yours in cheering our kids and helping them feel special,
Tim

They got him to sit on a horse!! And enjoy it, too!!

Having a blast in the water!

Our awesome Camp Director, Brooke!

Counselor extraordinaire Neela with our J-Man! Shhhhh. We think he’s her favorite.

Similar Posts:

• Operation Orange Fund Drive – Send Autistic Children to Camp, Freak Out My Hair
• Operation Orange – Time is Running Out
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• Who’s Gonna Ride Your Wild Horses?
• How We Finally Got Through a Trip to the Store
• Operation Orange – Pictures!

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!”Similar Posts:

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• Be Aware – For Parents
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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:

• Boy vs. Dentist – The Next Chapter
• Autism Meets the Dentist – To Restrain or Not Restrain
• Our Trip to the Dentist
• Time For Our Semi-Annual D-Day
• You Kinda Get Used to Weeks Like This
• Survived the dentist!
• Dreading the dentist…

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.Similar Posts:

• Autism Meets the Dentist – To Restrain or Not Restrain
• Boy vs. Dentist – The Next Chapter
• Our Trip to the Dentist
• Dreading the dentist…
• Time For Our Semi-Annual D-Day
• Survived the dentist!
• You Kinda Get Used to Weeks Like This

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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• 1 in

I don’t know what percentage of our day is concerned with managing our J-Man’s sensory challenges, but I’m sure it’s a lot. Just about every autistic child I know struggles with one or more of their major senses even under ‘normal’ conditions. Of course, this can make already stressful situations when they occur even more unbearable.

If you’ve been on the autism road for a while as a parent, you know that managing and helping calm these sensory challenges can mean all the difference between successfully accomplishing something and your child coming undone. I don’t think I’m overstating things when I say that these sensory issues are the knife edge so much of their lives is balanced upon, and it doesn’t take much to knock them over that edge.

One of the things that parents new to autism in their families need to make sure they understand is that these sensory issues are very real and may be very painful to your child. It can be difficult to understand why something bothers your child so much as it sometimes doesn’t seem logical to us. Why would a fabric, for example, that most of us wear every day cause a child to be in agonizing pain? Sensory challenges are particularly hard to appreciate and figure out for people who don’t really have them. In time, you will figure out more and more about what bothers your child even if you don’t get the why behind it.

However, there will be many people in your family and circle of friends who will continue to think your child is overreacting and that you are coddling them by catering to their sensory needs. In what I think is a mantra you should hang on your wall, “It doesn’t matter a microscopic damn what they think.”

So when things come undone for your child – whether it’s in a store, a family gathering, a supposedly low-key night at home, or anywhere else – there is frequently a strong sensory component to it. When you call upon your arsenal of calming techniques – which you should always be adding to and refining – these sensory issues will often be the first thing you address.

Like with pain management for any of us, it’s important to stay ahead of the pain by proactively managing it. Once it gets away from you, it can spiral down in a hurry. So your best calming technique is to watch for the early warning signs and head things off before your child loses their ability to cope with a situation. It’s much, much harder to help bring them back than it is to try to manage it from the beginning.

However, that’s easier said that done. Even with our best efforts, things are going to fall apart. Expecting our kids to manage the sensory bombardment they face every day is like expecting them to climb Mt. Everest. So then what?

Every child is different, so there’s no right formula for how to do this. It comes with experience and a healthy dose of analysis. Make notes of situations in which your child really struggles. Think about things in the environment where the problems occurred and look for commonalities. Some may be obvious (e.g., public places that are crowded and noisy) others may be much less so (e.g., stores that contain a lot of the color red).

Start by thinking about what you can do to help calm – even a little – the things that cause your child distress before things spiral into a big problem for them. For example, can you go shopping at a less crowded time of the day, such as mid-morning? If so, can you use that time to practice shopping trips? You could structure the trip to the store, say you’re going to get three things and visually present that to your child, get them, check out, and leave – little trial trips to the store to help your child hopefully grow in comfort.

I’ll tackle a sense that has always been an issue for us, and one that can present challenges for both child and parent in numerous contexts – proprioception. Then I’ll say something about how various techniques have helped us help our J-Man in stressful situations.

But you might need a definition for proprioception first, especially since it’s a sense many of us take for granted. Proprioception is essentially your body awareness sense. It helps you know where you are in space. To give some simple examples, if you’re standing up, it helps you know you’re standing, where your body is, and that your feet are on the ground. If you’re sitting, it helps you know your body is in the seated position and in contact with your chair. Sounds trivial, but if you’ve ever had this sense of falling when you’re in bed at night, you might have some idea of what it feels like when your sense of being horizontal and in contact with your bed goes away. It startles and scares you. Now imagine life being like that for long periods of time, all the time, and not just for a split second right before you go to sleep.

One of the best ways to deal with an underdeveloped proprioceptive sense is to help your child feel more aware of their bodies. This can be wonderfully calming both in everyday situations as well as stressful ones. Our J-Man responds to deep body pressure and ‘heavy work’, lifting or moving heavy objects around. A lot of autistic children I know benefit from techniques in both of these areas. If you think about it, this makes perfect sense. If you’re standing up in a room and then someone hands you 50 pounds of sand to hold, you’re going to be a lot more aware of your body and how much more you’re pushing against the floor. Obviously some children will hate it, and it’ll be the exact opposite of what they need. As with everything, you have to tailor a plan specific to the needs of your child.

Deep pressure involves a wide variety of activities that apply some sort of additional force to the child’s body. Our J-Man responds to firm pressure applied to a large portion of his body. Some examples of things we do or have done in the past:

* Full body hugs and squeezes
* Carrying him upright in your arms like you would hold a baby to your shoulder
* ‘Squishes’ where he essentially lays down on the floor, couch, or chair and we lean our body weight on him
* ‘Burrowing’ which he usually initiates by crawling in behind you while you’re sitting on a couch or chair
* Piling blankets and pillows on him, sometimes while leaning on him and the pile
* Joint compressions (with or without brushing) – See here for a basic explanation.
* His car seat – he likes the coziness of his car seat, which is still a five-point harness in a seat that wraps around him more than a lot of kids’ seats
* Pea Pod – something that looks like a kid-sized inflatable boat that he can sit or burrow in
* Wrapping him in something like a blanket

Obviously this list isn’t comprehensive. You could also try a compression vest or compression clothing. For those of you who’ve watched the Temple Grandin movie, the squeeze machine is based on this whole concept of deep pressure.

And here are some examples of heavy work. These are more pre-emptive calming techniques that we could use to try to head off potential meltdowns, but they can work well when things start getting stressful.

* Letting him pull on something heavy that will be hard (or even impossible) to move – pulling a wagon filled with books, for example
* Letting him carry heavy objects like encyclopedias and phone books
* Letting him rearrange furniture
* Wearing heavy, cloppy shoes – he wears these heavy, all-terrain, Stride Rite shoes, which add weight and give him a lot of feedback through his feet. I know plenty of kids who wear heavy shoes and work boots.
* Weighted vest – Simply a vest with weights built into it to apply some uniform, downward weight to your child that they wear around for a while. We don’t use one now, but we did for a while. Note: You should only use this under the supervision of an occupational therapist.

These are just some ideas that have been great sensory calming aids for us. As always, your mileage may vary. Your friendly, neighborhood occupational therapist should have a wealth of information about sensory challenges and sensory defensiveness, proprioception and all the other senses, and the huge variety of things you can try to help your child in difficult situations.

Luckily for us, our J-Man is resilient. Once removed from a stressful situation (extreme example – the dentist), he recovers quickly, but he has to get out of there first. If he can get to a ‘safe space’ when things are bad for him, he can regroup admirably. Last dentist trip, once we got back into the car and got him in his car seat, he started to relax. Eventually he just shut down (went to sleep, but mostly just shut off) for about 15 minutes before we pulled in our driveway. It’s amazing how much he’s learned about helping himself through tough situations. Our kids can teach us a lot about what they need!

There’s a lot of trial and error involved in finding the right formulas to help your child in various situations, and what might work in one context may not in another. I doubt this is a news flash to many of you, though. There’s never a straight path from Point A to Point B! But start by identifying the senses that your child has the most difficulty managing, look for how those senses are negatively triggered in various situations, and then try everything you can think of to address them. In time, you’ll develop your ‘go to’ list of things to try in familiar and new situations.

If you stay totally centered on your child and learning what’s hard on them and what helps them feel better, you will figure a lot of things out. Remember, it’s not about whether you really understand (though it does help) why something upsets them or helps them, it’s that it does. Bounce ideas off therapists, teachers, and other parents. They can help you see some things you might have missed. In the end, you want to be able to head things off before they get bad, and if you can’t, then have ways to bring things back when they start spiraling down. It’s a challenge, but we’re used to that!

[Thanks to Danette Schott for including this on her September "Best of the Best" posts about calming techniques with special needs kids. Lots of great wisdom from some fantastic bloggers there, so go check it out!]Similar Posts:

• Be Our Vest, Be Our Vest! We Love Our Weighted Vests!
• Sensory Coping Techniques
• Interrupting the Loop
• Heavy Work
• Shoes, glorious shoes!
• When the Only Thing Routine is the Lack of Routine
• How We Finally Got Through a Trip to the Store

You may have guessed this, but in case you didn’t know, Tim and I are introverts. We can handle being social in very small doses, with only a few people at a time – where we can do some serious talking – but then we need a good amount of time to recover! Big parties where I don’t know anyone are by definition terrible for me. Tim has learned a bit more about being social in a crowd, but usually I’m fine if people don’t talk to me because I’m bad at small talk.

All this to say that actually, we have absolutely NO trouble talking to other people about autism, and our lives as parents of an autistic boy. AND, we want other parents to talk to us! The parents who do drop-off and pick-up for the AU classes at the J-man’s school tend to stand around and talk to each other during the wait times, EXCEPT for the new parents. It seems like this year, the parents of the kids in Pre-K (and therefore, new to the school in general) don’t want to talk. They stay in their cars, watch closely for the kids to come out, grab their kid, and GO.

I wish they would stay and talk.

We had a family night at the school last week, and I saw one of the new families there. I went up to talk to them, because I remember what it’s like to be new. The mom talked to me a little, and then mentioned that everything about autism was new to her. She had all these questions, and didn’t know who to ask. I started introducing her to the other parents in the room, because we can answer lots of those questions!

New Mom: well, we were a little late because I had to make more chicken nuggets. (In an aside) I swear I make nuggets 50 times a day. I feel like all he eats are nuggets.
Me: Let me talk to you about the Sacred Six foods that the J-man eats. Really. Yes. Only 6 foods.
New Mom: Oh gosh! I thought we were the only ones who had food issues! (tears in her eyes)
Me: No, I can introduce you to a lot of people whose kids have food issues!

New Mom: I feel like sometimes my son has some sort of odd feelings about touching things.
Me: Yes, the J-man does too.
New Mom: It’s almost like it HURTS him to touch soft, goopy things.
Me: Yep, sensory issues are VERY common with autism. The J-man has had a LOT of therapy to help with that issue, but there are still some things that he shrinks from, or actually gags when he sees.
New Mom: My family has told me I’m just “spoiling him.”
Me: No, for some autistic people, it seems that sensory input is much higher than for others. It’s almost like nails on a chalkboard type of feeling. Let me introduce you to others whose kids are working through some of those issues.

New Mom: is autism something he will grow out of? I’ve only ever seen 3-5 year olds with it at this point.
Me: well, autistic kids do keep developing and changing and learning – it’s just often at a different pace. Let me introduce you to some people who have older autistic kids.

And so on.

I just wanted to hug that woman so much! I wanted her to know that she’s not alone. I wanted her to know that the parents in that room, and the parents she sees during drop-off and pick-up are NOT judging her. I wanted her to know that talking to other parents can help, if not with specific tips, then at least with empathy, because we live it too.

I wanted her to talk to me.Similar Posts:

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