November 2010

Like This

by Tim on November 22, 2010

Another discovery from my writing file.

When they ask, “How do you keep up with everything?”
show them pictures of him smiling with his therapists and teachers,
show them everything he could not do three months ago, and say,
“Like this.”

When they ask, “How does all this sensory stuff work?”
take their hands and stroke a purring kitten,
wrap them in an embrace, dance with a symphony,
bring them out into the sun and let it warm their faces, and say,
“Like this.”

When they ask, “How does your son being different affect your life?”
draw them a picture of a large dairy farm with endless herds
and one remarkable, dancing, purple, polka-dotted cow
whom everyone marvels and smiles at, and say,
“Like this.”

When they ask, “How do you make sense of his need for order?”
point to the heavens and the procession of constellations
and the orbiting planets and the traveling moon, and say,
“Like this.”

When they ask, “How can repeating the same thing over and over help him?”
show them the waves as they roll on to the shore,
recede back to the great ocean, and then return once more;
show them the rain falling to nourish the fields, and the water rising back up to the sky, and say,
“Like this.”

When they ask, “How does he communicate with pictures?”
show them the trees and the sky and the lilies of the field,
bring out photos of the Pieta, distant galaxies, and the helices of DNA, and say,
“Like this.”

When they ask, “How does it feel to speak to someone all day every day and have him never really talk back?”
Face the open air, kneel, and pray, and say,
“Like this.”

When they ask, “How will you deal with the future?”
show them the depth of his great blue eyes,
hum his favorite song and let them see his head fall to your shoulder,
and kiss him gently on his cheek, and say,
“Like this.”

And when they ask, “How do you parent a child with autism?”
Stand with your arms open, your chest out, and your head high, and say,
“Like this.”

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Operation Orange – Pictures!

by Tim on November 14, 2010

If you’re new here and are asking, “What the heck is Operation Orange?” you can read about it here.

Well, I survived the 10K. I wouldn’t call it triumphant, I missed my goal time by almost 3 minutes, and I felt like I was lugging seven people on my back for half the race, but I had some badass hair and multiple, garish shades of orange to go with it. And why I did it was by far the most important thing. So it’s all good.

You asked for them, so on with the pictures!

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My favorite picture

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Closer up. It’s like mood hair; it looked different depending on where I was.

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At its most egregious orange

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Struggling to the finish, but finishing nonetheless!

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Again, thank you so much to everyone who donated! You are awesome!

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Our purpose in life is…

by Tim on November 13, 2010

I think I figured out the meaning of life, but let me at least tell you how I got there.

Thursday night we had our victory celebration at the YMCA. My Operation Orange wrapped up along with all the other fundraising efforts of the 180 volunteers at the Y. Our goal between those of us who were on Team Camp GRACE was to raise $18,000. We had no idea how much we had raised until the last minute. They handed us the total near the end of the event.

It was over $32,000!!

I am so grateful to everyone who donated that I don’t know what to say. A lot of awesome, autistic kids are going to have a great time at camp next year and have opportunities they otherwise would not have had.

Maybe one thanks I can offer is to share a revelation I had on the way home from the celebration Thursday night. It seems so simple; perhaps it’s only revelatory to me. But it was the first time I’d ever seen it this clearly.

At the kick-off event for the fundraiser some weeks ago, they told the story of a girl at one of the YMCA camps. This was a camp where many of the kids come from circumstances where they don’t often get to participate in fun, community activities, do things they dream about, or feel valued and special. One day they had a talent show. They asked this particular young lady what she wanted to do. She said, I want to walk like a model.

So they set up a runaway, surprised her with red carpet and high-energy music, and she walked up and down that carpet like she was queen of the universe. And in that moment, that’s who she transformed into. People stomped, clapped, and cheered for her. You could see it in the picture; she felt cheered for and she felt special.

To me the best surprise at the victory party was not really that we blew away our fundraising goal, as fantastic as that was. It was that they invited that young lady to be there to help announce the final fundraising total for the entire Y ($507,000!!).

They had put down red carpet in the gym where we were having our celebration. They invited her to take her encore for having inspired us over these past few weeks. Music thundered, and we stomped, clapped, and cheered for her. Her joyful spirit filled the room. She nearly blew the roof off the building.

She was everyone we work for, every child we value, every young person we celebrate.

And on the way home, I ran that scene back through my mind several times – the look on her face, the pride in her walk, every part of her held high. And then I got it. I thought, This is the purpose of life.

To cheer for people and help them feel special.

It may not be the only purpose in life, but if it were, I think that would be quite enough. The best of what we seek to do in life – supporting, advocacy, teaching, promoting justice, empathy, learning, organizing, volunteering, writing, blogging, speaking, consoling, exhorting, building community, everything – arises naturally from it.

It’s one of the most basic things we all want. It’s a fundamental part of our humanity. Often all we need is for someone to cheer us on and tell us and show us that we are special. From there, each of us can do wonders.

So let’s go practice this. Check everything we do against this idea. Go seek ways to live this out.

Thank you to everyone who supported Camp GRACE! Because of you, we’ll be cheering for a lot of amazing kids next year who are special beyond words.

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1001 Tips for the Parents of Autistic Boys.jpg[Disclosures: I have several tips in this book, and I received complimentary copies of it.]

Note: If you donate $15 or more to my Operation Orange fundraiser for our local camp for autistic kids by midnight (Eastern Standard Time, U.S.) tonight (November 10th), I’ll put your name in a hat, and the name I pull out will get a free copy of 1,001 Tips for the Parents of Autistic Boys.

The books 1,001 Tips for the Parents of Autistic Boys and the similar, companion volume for girls were just released, and I got a chance over the last few days to read the one for boys. I only have a copy of that version, so any references to specific sections below may not be the same in the girls version.

1,001 Tips for the Parents of Autistic Boys ambitiously attempts to provide helpful suggestions and ideas across the entire constellation of issues we face as parents. The result is a 480-page guide that for the most part succeeds in providing a wealth of useful information and plenty of ‘aha’ moments from me of ideas I’d never thought about. It’s not without its weakness, and certainly some tips are far better than others, but one of the strengths of this format is that you can take what works for you, maybe learn from some others, and ignore the rest.

In the Author’s Note, Ken Siri states that the book is organized by autism chronology based on how long your child has had an autism diagnosis. I found that the book functioned differently for me, and perhaps this is a positive, if maybe unintended, consequence of the book’s format. I found insights in most every corner of the book, and jumping around the pages seemed as good a way to read it as any. If the author hadn’t mentioned anything about a chronology, I doubt I would have thought about it. For many of us who have a few years with autism under our belts, 1,001 Tips is a brisk skim where we can mark the tips we want to think about later and cruise by the ones we don’t. The strength in this book is that it gives you a load of ideas that I think function very well as jumpstarters that can lead to you getting several new ideas of your own that may help you figure out a problem you’ve been stuck on.

The downside to this format is that there is very little space to expound or build on the ideas provided. However, many of the tips do come with references to their original sources, many of which are freely available online, so you can read more about those if you want to. In a number of cases, I did want additional information or just some clarification that wasn’t available. I see this more, though, as a limitation to this style of book rather than a problem with the way this particular book is written. (Bonus tip: If you want a great online resource that covers individual topics more in depth in essay format, visit The Thinking Person’s Guide to Autism.)

While the following caution is echoed in the book’s introduction, I think it merits repeating. There’s a lot in this book. Some of the suggestions contradict other tips in the book. In general, I think this is OK personally as this is just how the world of autism works right now. But you really do need to read this book with this in mind. No one tip or set of tips should be considered gospel. If you read it with this perspective and your ability to think critically – and this is true for any book about autism – you’ll get much more out of it.

I believe this is especially important to parents whose children just recently got an autism diagnosis. It’s easy to get horribly confused and overwhelmed by all the information that bombards you during this time. The rapid-fire nature of how the tips are presented in this book could make you easily feel like you’re on the business end of a fire hose. Know this is a normal reaction, read a few, put it down, then come back later. And always remember, these are ideas, not verses out of an autism gospel.

So if I had to add any tips to the book, I think I would have voted to start the book with the following:

1. When it comes to autism, don’t believe everything you read.

2. Develop a healthy skepticism to advice, particularly relating to treatments.

3. There’s so much we don’t know about autism that when someone begins a statement with “We know that…” and then proceeds to suggest a treatment or course of action based on what “we know”, there’s a good chance you should be skeptical.

For those of you looking for an introductory text to autism, I think 1,001 Tips is likely going to be a daunting read. Honestly, it wouldn’t be my first choice if you’re just getting your bearings in the wide world of autism. Looking back at our family’s first days with a diagnosis, I think that’s a time when people just need support, an understanding listener, affirmation that their child is perfect and wonderful, and reassurance that they as parents aren’t crazy. After you get that and get your bearings a bit, then start swimming in the information pool.

I personally found the sections on Supporting the Family Unit, Daily Life, and Productive Approaches to Parenting to be treasure troves of good ideas. I noticed I was marking one idea after another there. Not surprisingly, these sections address many of the issues we’re struggling with right now. When you have 1,001 tips, there’s something for everybody in here. (In case you’re wondering, you’ll find me back in the Safety section sharing some tips I learned from an expert and autism mom on our local police force.)

I do have one significant issue with this book. I personally found the section Medical and Nutritional Treatment disappointing. While there is broad coverage in the book of much of what is currently offered, the information presented is often rather technical with not enough background or references to allow parents to do their own research and determine whether these approaches are appropriate for their kids. Given what felt like an excessive number of tips in this section, room could have been made for these perspectives.

In many instances, the information provided comes from tips submitted by those who provide the therapies described, which also applies to the Therapy Implementation section preceding it. This alone doesn’t make their ideas wrong, but professionals who provide certain services will always paint them in the best light. While the purpose of this book isn’t to make value judgments on how good or how ineffective a treatment or therapy might be, they all come across as having a magical quality to them that daily reality regularly doesn’t bear out. All that is to say, just know there’s more to it in many cases.

Much of the information, for example, about biomedical treatments and statements related to ‘toxicity’ issues is limited in perspective to a particular viewpoint. I did not see any tips or commentary from the numerous parents who have tried these therapies, spent tens of thousands of dollars on them, and seen no real improvement from them. Also, there isn’t any discussion from medical professionals who refute the assumptions behind some of the biomedical therapies. I’m not casting a wide blanket over the whole range of these treatments, but I think their portrayal in these sections in many cases oversells their claims while glossing over how many parents and professionals view them.

I’m not going to play doctor here and try to argue for or against particular treatments. There are other places for that. But I do think not including the perspectives of numerous parents and professionals who do not recommend at least some of these therapies and disagree with the assumptions behind them is the one glaring omission of this book. These strong disagreements exist in the autism community, and any survey of autism should acknowledge this. Those of us who have been at this a while already know about all this. It’s those who have just recently received a diagnosis that I address this to. You need to do all your homework, familiarize yourself with the disagreements and controversies, study the research, consult with properly trained professionals, and make up your mind what you think is best for your kids.

While I do realize that the author sought a comprehensive survey of autism topics, a few just really didn’t need to be here at all. Frankly I was shocked by the title of the chapter “Preventing Autism”. We barely have an inkling of what causes autism, and the chapter title presupposes that we do and here’s how to prevent it. However, if you’re reading this book you probably already have an autistic child, so the chapter just comes across as a judgment on your poor, pre-pregnancy and pregnancy, parenting choices. What’s frustrating about this is that the tips in the chapter for the most part are good suggestions in the general sense for pregnancy and when you’re trying to conceive, though some are in various degrees of left field. Putting the “Preventing Autism” label on it, however, projects all of these tips through a lens of assumptions many of which are shaky at best, disproven at worst, and most likely just to make parents feel unnecessarily guilt-ridden.

The previous ranting aside, I do applaud Ken Siri for including several topics that parents aren’t particularly comfortable even thinking about. The sections on puberty, physical maturation, and sexuality were essential inclusions in the book and ones that I thought were handled well. There’s a lot more complexity to these topics than could possibly be discussed in the confines of this book, but it gets you thinking about the issues and so does its job well.

Overall, there are a multitude of helpful tips and ideas in this book, even for ‘veterans’ who have a few years of parenting an autistic kid under their belts. I think those of us who have been at this a while may be the best audience for this book as we perhaps have a more developed sense of which ideas have a good chance of working for our kids and which don’t. I think if I had read this book three or four years ago, it would have been a lot more challenging to process.

While there are some chapters and individual tips in this book I either disagree with or would suggest removing entirely, for the most part 1,001 Tips for the Parents of Autistic Boys contains a variety of ideas and starting points to address the needs of most any parent.

You can get some introductory chapters on their website at www.1001autismtips.com.

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Operation Orange – Time is Running Out

by Tim on November 9, 2010

We’re in the last 36 hours of Operation Orange, my fundraising drive to raise money for Camp G.R.A.C.E., a local YMCA camp for autistic youth in my town. Thank you to everyone who has donated so far!

I’m throwing in a giveaway now, too! I’ll put the name of everyone who donates $15 or more into a hat, and the name I draw will get a free copy of the new book “1,001 Tips for the Parents of Autistic Boys” by Ken Siri. I’ll also be posting a review of it tomorrow. Yours truly has a few tips in the book! (There is a different edition of this book for girls, but if you have an autistic girl, most of the tips in this book apply to both girls and boys.) Note: You’ll have to e-mail me your donation receipt because I don’t get a record of your donation otherwise. Everyone who has already done so is already in the hat.

Camp G.R.A.C.E. needs to raise $18,000 to meet its goal for 2011, and I have about $1,000 to go in 36 hours to reach my goal. Your support toward that goal will mean that 37 autistic children and their families will be able to afford a camp experience next summer like our J-Man had. 100% of your donation goes directly to their youth programs and provides discounts and scholarships for autistic children to come to camp.

If we meet our goal, I will dye my hair orange and wear an orange running outfit at a huge 10K road race in my city next Sunday (the 14th). They are forecasting a couple thousand runners and lots of spectators! And yes I will post pictures.

To read more about why orange, the camp itself, and why it’s important to us, see my original Operation Orange fundraising post. Or you can skip straight to the donation instructions.

Remember, we’re all done at midnight tomorrow night (the 10th), so please donate now! Thank you!

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11/13/10 – Update! The members of Team Camp GRACE together raised $32,000!! Thank you so much to everyone who donated! 2011 will be an awesome year for these amazing kids!

This is the first time I’ve done this on our blog, but I want to do something, shall we say, ‘colorful’ to help autistic children in my city. We’ve got a week to do it in, and I can’t do it without you.

Let me explain. This past summer was the J-Man’s first camp experience at Camp G.R.A.C.E. (Growth, Recognition, Achievement, Character, Encouragement), a camp for autistic children at our local YMCA. Neither we nor our J-Man knew what to expect. He and I went together to the front door both nervous, but they greeted him like an old, dear friend. They went out of their way to make him feel comfortable and calm, no easy feat given how anxious and fearful he can be of new situations. They showed him respect and patience and helped him work through that uncertainty for as long as it took.

Going to camp is a rite of passage for so many children. Camp G.R.A.C.E. gives our children with special needs an opportunity to build social skills and confidence and have many of the same camp experiences other children do, an opportunity they wouldn’t otherwise have if the YMCA and those amazing counselors weren’t there.

I knew the J-Man had found a new home there the first morning of the second week when he walked right in on his own after having spent the first week working up the courage to do so. He came home that afternoon with the Camper of the Day award for having such an awesome day at camp. He may be unable to tell us with words how he feels, but he still finds ways to share that with us.

On the final day of camp, Mary and I came to the awards day. Each group at Camp G.R.A.C.E. stood up, and the counselors for that group gave a special award to each camper. They did that day what the best people who work with our kids do – they see the amazing gifts our kids have, and they celebrate them. They honored our J-Man with the Pint-Size Picasso Award for exemplary artistic skills during camp, particularly his lavish use of the color orange. These are folks who get it.

Oh, and remember the color orange. You’ll see why in a minute.

But providing the supports and staff necessary for the camp costs money. Camp G.R.A.C.E. provides extra assistance and accommodations to our children because of their needs, and even after so many generously volunteer their time and resources, it takes funding to create and staff a camp with highly-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.

As part of the YMCA’s We Build People campaign, Camp G.R.A.C.E. needs to raise $18,000 to meet its goal for 2011. Your support toward that goal will mean that 37 autistic children and their families will be able to afford a camp experience next summer like our J-Man had. 100% of your donation goes directly to their youth programs and provides discounts and scholarships for autistic children to come to camp.

For many of these families, medical and therapy bills leave little, if any, money available to go toward positive experiences like Camp G.R.A.C.E. Without these scholarships, they simply can’t afford for their children to go. And this is heartbreaking.

I know right now that money is tight for everyone, but I really believe in Camp G.R.A.C.E. And I’ll do what it takes for the camp to reach its fundraising goal. My goal is to raise $2,500, and I have one week to do it in.

I’m prepared to do something I’ve never done before to get your support for Camp G.R.A.C.E., and I’ll do it in public in front of a few thousand people.

On November 14, right after the YMCA’s We Build People campaign ends, is the 27th Annual Old Reliable Run in my city, one of the oldest and most popular 10K road races in the country. This year it’s also the Southern Regional 10K Championship, which means there will be a lot of people there.

If you help me reach my fundraising goal of $2,500, in honor of the J-Man’s Pint-Size Picasso award, I will dye my hair bright orange, get an orange running outfit, and run the 10K in front of God and my city and anyone else. I’ve never done anything like that before, but I’ll do it for something, and someone, I believe in.

And yes, there will be pictures.

Now it’s your turn. I’m asking for your help in providing these amazing children with a camp experience they’ll enjoy and remember with kind and skilled counselors who value and love them, who accept and celebrate them. Every dollar makes a difference!

Time is short, and my hair is only getting grayer. Please go here for the link to make your online donation via the YMCA and to read a couple of instructions on how to get your donation credited properly. November 10th is coming fast, so please donate soon!

Yours in celebrating awesome kids everywhere,
Tim

P.S. Don’t forget to e-mail me and let me know how much you donated so I can record your donation toward the goal of $2,500! If you would rather donate by check, send me a message and I’ll give you instructions.

(P.S.)^2 – Running is also a very important part of this story. After you donate, I invite you to read my post “Today I Was Strong Enough” about the recent Autism Run 5K.

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