April 2011

Book Giveaway Reminders

by Tim on April 26, 2011

Life got a bit crazy around here so I’m rather late in posting this, but you have several opportunities to win some great books over these last few days of Autism Awareness Month.

We’re giving away two on our blog: 1,001 Tips for the Parents of Autistic Boys (which actually is quite similar to the version for girls) and Love You to Pieces. All you have to do is go to those posts, read the reviews if you want, and follow the instructions about leaving a comment. Deadline is Saturday, April 30th, so enter soon!

Our giveaway is part of a larger one sponsored by the S-O-S Research blog. The Best of the Best Giveaway Bonanza includes $1,100 of giveaways offered by a bunch of different bloggers along with reviews of what you can win.

So go check it out!

Best of the Best Giveaway Bonanza

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Some of you know where we live, but most of you probably don’t. You may have seen pictures of all the tornado damage in North Carolina, particularly in the Raleigh area, from this past Saturday. Well, that’s us, or at least just barely almost us. That tornado that carved a huge gash in our city passed within about 500 yards of our house.

Before I talk about anything else, let me say that we’re OK. By whatever freak variables and factors that go into how a tornado moves, the damage path appears to have sideswiped the edge of our subdivision and nothing more. Trees are down in a few places along the edge of our neighborhood, but amazingly, we were unscathed.

Not far down the road, it’s a much, much different story. Some of the worst damage from the storm occurred about a mile to a mile-and-a-half north of our house. The damage path traces the same road I drive the J-Man on to and from school.

The day after the storm, Mary and I drove toward the school to see what it looked like and to check on a friend of hers we hadn’t been able to reach by phone. At the mobile home park we pass each morning, most of the trailers were damaged or destroyed. The Buddhist temple nearby had trees down everywhere. Then we came around the corner just before you get to the school and saw nothing but carnage. Some houses had the siding peeled away like an orange all the way down to the plywood. Some of those had giant holes ripped in the sheathing like some monster had punched them.

The damage kept getting worse the more we looked. Some houses were sheared off at the roof line. Some houses were picked up and thrown 15 feet away from their foundations. Others looked like several feet of the house were just hacked off with an axe. Some were caved in. And there were some houses that were simply gone.

We saw sheet metal wrapped several times around telephone poles. We saw baseball cards and CDs jammed into the cracks of siding. There was even a CD embedded in a tree trunk. We saw pieces of several houses mingled together in the road like some terrible flotsam. It looked like something out of an apocalyptic movie.

And then there are the stories of parents who lost children in the storm. These are too painful to be discussed. We had our two scared kids crammed in with us in our small downstairs bathroom. And ever since, one thought has been running through my mind.

It could easily have been us.

Thankfully the TV meteorologists did a great job keeping us informed and prepared. We had about 15 minutes to get ready. We already had a decent idea in our minds what we wanted to do in case of such an emergency. Now we’ve had a real life run through it. We learned some things, and some of them are perhaps particular to helping your autistic child get through the crisis as best you can.

Start with the basic tips you can find in a variety of places. Here are some tornado and general storm safety preparedness guidelines (courtesy of my alma mater). Don’t wait until it happens in your neighborhood. Being prepared saved a lot of lives here.

Here are some additional things I thought of based on our recent experience. Some are general ideas while others are somewhat autism-specific.

  • Determine your ‘safe place’ ahead of time. If you have a large family, you may need more than one. Ours is the small downstairs bathroom in our house. The backup is the tiny coat closet next to it. The smallest room you all can fit in that’s in the interior and lowest level of your dwelling (one with no windows and no load-bearing walls) is going to give you the best chance of survival.
  • Create a checklist of essentials you need in your safe place and have it ready long before you need to use it. Try this out ahead of time to make sure your supplies and your family will fit in that room. Some things we thought important: pillows and blankets (protects against debris and stuff falling on you), socks and shoes (walking on glass and debris will be bad), diapers and wipes, raincoats, radio with fresh batteries, flashlights (LED ones are great because they will run forever – having at least one lantern-sized light source will make a huge difference particularly if your child is scared of the dark), cell phones, friends’ phone numbers, wallets and keys, your ID and your child’s medical alert bracelet if you have one, medications for everybody, food – especially snacks for the kids – water or favored drink, a pair of work gloves (will make it easier to dig out if you need to), and plastic grocery bags. Throw as much of this as you can into backpacks or duffle bags as it’ll make it easier to keep track off and carry if you need to.
  • Make sure your autistic child’s favored toys or books are in there, obviously the smaller the better. Things of high distraction value are especially good. The iPod helped distract the J-Man who was getting more and more frantic.
  • In some places, you can subscribe to a service that will call you if warnings are issued and your address is in the warning area. We pay $8 a year for this and it paid for itself a hundred times over last weekend. This can be more effective than a weather radio since the service will only call you if your address is located in the warning area.
  • Mobile devices with 3G are very useful as we found those still worked throughout, albeit slowly. We could still get radar updates and additional info even though power was out for miles around.
  • Make sure you cover anything in your safe place that could injure your child if he or she panics. We realized while we were in the bathroom that the protruding toilet paper holder was a potential hazard. The edge of the sink was too. If your child tends toward self-injurious behaviors or simply a lot of frantic movement when panicked, you’ll need to be careful in a confined space.
  • Disable the door knob, lock it, stand in front of it, guard it with your life. The last thing you want is your child getting out of your safe place. We put the child safety knob cover on the inside of the door, which mostly thwarted the kids trying to escape. You might need to resort to something more drastic like a latch or a bolt-type lock.
  • Put your valuable papers, your child’s medical records, and stuff you absolutely need to preserve into a heavy fire safe and etch your name and address into the outside of it. There’s a good chance a locked fire safe will survive a storm, and having your contact info will help it get back to you. Obviously do this well in advance.
  • Ideally, store your essential electronic files far away from your house. We’ve accumulated tons of paperwork for the J-Man, which we’ve scanned and stored on an online backup service. I’ve also backed it up to an external hard drive, which a family member in a different city keeps for me. Losing all that would be disastrous.

If you do suffer damage to your house, obviously the orderliness of your child’s life will be in complete upheaval, whether your child is autistic or neurotypical. I wouldn’t even begin to know how best to deal with this. Our school system published a useful resource about helping primarily neurotypical kids deal with the aftermath of a tornado. The National Child Traumatic Stress Network also has great information.

Not being directly impacted by the tornado but being witness to a lot of things since has allowed me some opportunities to learn some important lessons.

Our school has been one of the community focal points for gathering disaster relief supplies and distributing them to families in need. This week we went through the kids’ old clothes, which got me thinking about all sorts of things. I thought about our two wonderful boys and that we’ve decided to not have any more kids. I’m very sentimental, and so many of their clothes have so many memories or me. I hate boxing up clothes when they outgrow them. It’s pure grief really. Long ago I wrote about how our J-Man growing up and boxing up the things he’d outgrown was hard for me to deal with. Packing up their old toys is at least as hard for me if not worse. We saved a lot of the J-Man’s clothes for Dale Jr. Now we’re saving them either to remember or to donate. And there’s so much need around us right now.

Sorting through these clothes was just one tearful feeling after another for me. I saw the sleeper the J-Man wore to feeding therapy all those months, how it was covered in every type of puree ever invented, and that it was bleached so much it should just unravel itself. I picked out a few more clothes – many being sleepers for some reason – some clothes they had pictures taken in, and a few that I just remember. I tried to keep that pile small. The need is so great. I put the rest in the donation boxes and left the room. I couldn’t do anymore. I felt no small amount of shame about this. I’m grieving my kids growing up while others’ lives have been largely reduced to rubble.

Life seems very intense right now, at least to me. I think that’s what makes me react like this. I’ve been on some raw, emotional edge for a while now. I’ve been incredibly tired these last few weeks, and my coping skills are rather shaky right now. In reality, our daily lives aren’t that much more or less chaotic than they usually are, and certainly infinitely less so than all those affected by the storm. Breaks from school are exhausting as structure spirals and decays to near zero. We’re nearing the end of his 26-day break from school. The emotional stresses of the year have frayed me more than I realized. I vowed to not let myself get burned out again, and I’m not doing a very good job of it.

Some of the worst damage in our city is right across the street from the school. I see that and realize just how close our lives were to crashing down. I hear all the stories of those whose lives were turned upside down by the tornado, and I can’t even begin to imagine our family in that awful story. Some of those affected by the tornado have children around the same ages as ours. They lost so much from their very home to all the precious, irreplaceable things I value so much in our lives. And too awful for words, some families lost their children. There just are no words for that.

I’ve also seen so many acts of kindness this week, far too numerous to describe. People from near and far are generously helping people in need they’ve never met. Relief supplies are showing up from all over the place. You can see damaged and destroyed houses, blue tarps covering the gaping wounds in people’s homes, and endless downed trees from the sidewalk in front of the school gym.

I was over there this morning to drop off some more supplies. I helped unload some things that had come in while I was there. I looked across to all the devastation and around me at all the symbols of generosity and kindness, and I thought, there is goodness all over the place every day if I just decide to look for it. I don’t know why bad things happen, and I don’t know why some people do hurtful things to others, our kids, or to anyone for that matter. But I know our collective capacity for goodness is greater than anything else. It is what we are made for. And knowing that we are able to live that out gives me great hope.

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For Autism Awareness Month, we’re giving away one paperback copy of this book! Read on to the end for more info.

Love You to Pieces is a collection of literary writings from parents who are struggling with the various issues that come with parenting a child with special needs. Parents of children with autism are the most represented in this book, but the writings here cover a sweeping range of challenges from cerebral palsy, muscular dystrophy, Down Syndrome, deafness, communication issues, and much more to rarer conditions such as Angelman’s syndrome.

In here you will find both the expression of our common challenges as parents and the unique voices of families and their children. The stories and poems are arranged mostly in order by chronological age of the children in the writings, the early ones being about birth and infancy and the later about the path to adulthood. In doing so, the editor – Suzanne Kamata – has woven these individual stories into a grand whole that will stay with you long after you finish the book.

I almost without fail love this type of book. When parents and families tell their stories, I listen. I feel inspired, wiser, more educated, and less alone when I do. Of the books in this genre, I think Love You to Pieces is among the best.

Whereas books of the Chicken Soup or Cup of Comfort series lean heavily toward inspiration and triumph, Love You to Pieces unflinchingly drives straight for the emotional core of what it means to be a parent of a child with special needs. This isn’t a how-to book or a manual of tips and tricks. This is a roller-coaster you won’t forget.

The quality of the writing is superb. The writers do an astounding job drawing you into their stories and emotionally involving you in their lives. And it’s not a glossed-over version of events either. The rose-colored glasses are nowhere to be found. There is pure, unfiltered truth at every turn. Truth can lead to triumph, joy, desperation, hopelessness, and everything in between, and these stories take you to all of them and through every hard-fought step along the way.

They regularly left me with shortened breath, quickened pulse, and in some cases gripped by an all-to-familiar fear. Many of their emotions have been mine at one point, and for some others it’s a close enough walk from my experience to theirs that imagining what they must feel like isn’t hard to do. In those cases where I don’t have that frame of reference, the writers expertly drew me in and gave me enough glimpses into their lives to blow me away.

There are more than two dozen entries in this book, but to mention a few by name, “Coming to Samsara” is a perfectly written story of a mother who gave birth to severely premature twins at 23 weeks. It’s an emotionally wrenching journey full of sadness and beauty and coming to terms with all in life that is beyond our control.

In a book filled with gut-level honesty, “Magic Affinities” may be the most unflinching of them all. To give any of it away might reduce its impact, but I will say that it is a story that will stay with you forever. (A bit of warning – if your child engages in self-injurious behaviors, you may want to be careful with this one and read it on a calmer day.)

“Lives of the Saints” elevates everyday challenges and conflicts to the level of spiritual journey – not the ethereal, pie-in-the-sky, sweet-by-and-by kind, but one much more rooted in real life. Comprised of a series of snapshots into their family’s life, conflict and tension build without resolution. Its ending may feel unsatisfying at first, but you come to realize that there simply are no clean beginnings, endings, or resolutions on this path we’re on.

The poems are masterful as well. “Form and Void” for me captures the beauty-filled moments we have had blowing bubbles with our son. This poem finds magic and perfection in this simple act. “‘Severe Language Delay’: In the Kitchen with My Three-Year-Old” reads like a poetic transcript of my brain sometimes and should resonate with all of us who desperately try to understand what our children are trying to communicate to us. And for all of us who worry about what our children’s lives will be like as adults, pieces like the poem “Victoria’s Wedding” stand for the grieving visions of our children’s futures we are reluctant to admit we sometimes have.

If you only recently received a diagnosis for your child, this may not be the book for you yet. It’s hard to bring the raw emotions of those early days into contact with similarly visceral stories and not be overwhelmed. However I do think at some point or another that Love You to Pieces should be required reading for parents. But the goal of these stories and poems is not to drag us into uncomfortable places simply for the sake of doing so. These authors encourage us to acknowledge the emotions and thoughts we deem too awful or painful to speak aloud because so often they are common to all of us on this journey. They lead us deeper into ourselves to reveal the truths inside us, whatever those may be. And only when we shine light on them do we free ourselves to be the parents we want to be.

Want to win a copy? To enter your name in the drawing for the book, please share the title of a book you like that contains stories or poems from parents of special needs children, a parent’s memoir, or a link to a personal story written by a parent that you found particularly powerful and that is available online.

But no affiliate links! We’ll hold the drawing on April 30th.

While this is optional, we like to know where people are from, so if you don’t mind, please considering including what state (if in the U.S., or province in Canada) or country you’re from. Make sure the e-mail address you fill in works so I can notify you if your name is chosen. Thanks!

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1001 Tips for the Parents of Autistic Boys.jpgI originally posted this review last November. I have one more copy to give away for Autism Awareness Month, so I’m reposting this. Read on to the end for more info! Disclosures: I have several tips in this book, and I received complimentary copies of it.

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 weaknesses, 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.

Want to win a copy? To enter your name in the drawing for the book, please share a tip of your own in the comments section about parenting an autistic child. We’ll hold the drawing on April 30th.

Because we generally endeavor not to give medical advice around here, please focus more on tips outside medical interventions and related therapies. We reserve the right to moderate or disqualify comments that pitch therapies or products in which the commenter has some financial stake, so to those people – don’t spam. And use your own judgment about whether any tips offered here are appropriate for your child, insert standard disclaimer of liability here, etc.

While this is optional, we like to know where people are from, so if you don’t mind, please consider also including what state (if in the U.S., or province in Canada) or country you’re from. Make sure the e-mail address you fill in works so I can notify you if your name is chosen. Thanks!

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The Many Flavors of Autism Awareness

by Tim on April 2, 2011

I don’t know why, but honestly I’m having a hard time getting fired up for World Autism Awareness Day. I suppose it’s that we’re aware of autism every day, and we often aren’t quite sure how to speak in coherent sentences one day a year to the large populace who has little to no frame of reference about our children and our families.

I know this day really isn’t about us so much as it is for the rest of the world who doesn’t walk this path each day. It is a wonderful opportunity to reach people who are more likely to be paying attention. I suppose sometimes our awareness-raising efforts the other 364 days of the year leave me a bit weary.

Last year, I wrote a three-part “Be Aware” series that pretty much listed everything I thought people should be aware of. There’s Be Aware – For Parents, Be Aware – For Family and Friends, and Be Aware – For Everyone. Hopefully you’ll find them worth taking a look at.

We try to give our friends and family glimpses into our lives throughout the year. We usually aren’t dramatic about it, at least we try not to be, but we do try to give a realistic depiction of our lives with all its ups and downs. We celebrate and complain. We advocate and we lament. We cycle through the range of emotions from joy to fear and frustration and celebration frequently, often many times a day.

We look for opportunities for awareness all during the year. We tell our story to others when the chance arises whether it’s to educators, therapists, and doctors, co-workers, various people we run into at some function or another, or just random passers-by. We mostly do that to share that yes it is challenging but also that yes there’s much joy in our journey, we’re fairly normal people, and we get to discover wonders others don’t. I got to wear my Celebrate Autism shirt at the marathon, which got several compliments. I suspect at least some people saw it and gave it some thought, or at least I hope they did. I’ll even bite someone’s head off if they are being mean to a child. Not all awareness raising is gentle after all.

One bit of awareness in my life that I need to improve comes from the fact that often we are so aware of our own lives that we don’t pause to think about other parents like us and the unique challenges they face. Every family has a different story, and there is much insight and comfort we can offer each other. Raising our own awareness of this gives us opportunities to learn, feel understood, and grow in our solidarity with each other. Lord knows we need each other.

But that said, we often lack awareness of how we treat our own selves like dirt. We abuse our bodies by eating junk and letting our physical selves waste away. I became painfully aware last summer that if I didn’t stop doing that, I was in deep trouble. We keep pushing all of the fires and urgent things in our lives ahead of taking at least some basic level of care of ourselves. Often that is necessary, but at some point your body is just going to stop letting you run up that debt against yourself.

Some awareness-raisings are months and years-long projects like state-by-state efforts to mandate that health insurers cover autism. Not only do we have to raise the level of awareness among legislators as to why this is so important, we have to dispel the myths that stand in the way, such as how mandating coverage will jack up premiums, that is unless one really thinks that an increase equivalent to a Snickers bar is somehow jacking up.

Locally, we’ve spent much of this year (one of the projects that occupied me for several weeks) raising awareness in our school system regarding why increasing Pre-K special ed class sizes without adding teachers was awful. If nothing else, we raised awareness that people shouldn’t mess with our kids’ futures, we have really long memories, and we will not give up. That said, I think our work did make a positive impact on our school system, and several people gained some much needed insights.

We’re particularly aware that budget cuts are causing devastating impacts on local and state disability services. We have heard that they do not expect there to be any slots for these services for our J-Man or the hundreds of other people on the wait list at least for the rest of this year and maybe not for the next three. The usual 2-5 year wait list for services may go up even more.

Sometimes we can just practice random acts of awareness. Like today, Dale Jr. and I went to Stride Rite to shop for shoes for him. The extremely nice woman who was so patient and kind to our J-Man when we took him there a while back was working today. Dale Jr. had a blast today trying on shoes, playing, and running amok in the store. The J-Man however had a full blown panic attack the entire time when he was last there. She didn’t blink. She just patiently and calmly got us all through it. You know we’re all aware when someone at a business treats you and your child with kindness and respect. Make those companies aware that you are thankful for them and those individual employees.

Other times we have to grind it out with the systems and bureaucracies of the world. Often we have no idea what difference our actions make. We plant seeds and hope for the best. But I think no well-intended step we take is ever pointless. Collectively everything we do accumulates, building on each other’s efforts until something wonderful happens. Maybe it’s quick; maybe it takes a generation or more. So much of that is out of our hands.

Maybe what we can do today and every day is simply ask, what one thing can I do today? Can I make a difference to another family? Can I teach someone about autism? Can I spread a positive message? Can I just randomly act in kindness toward a complete stranger? Can I kick down a door that’s blocking the way of progress? Can I share a word of thanks to someone who has helped us? Can I be a little kinder to myself? This applies whether you have an autistic child, you’re a family member, you work with children, or you just want to be a kind citizen of the world.

Ultimately, if we act in kindness with an intention to make a positive difference for our children, our families, our communities, and our world, I believe that whatever we can do will matter. We might not know how and we may get precious little evidence that it did, but I think we can trust that good things do somehow come.

Today, maybe if what we just say is, Let me tell you about my wonderful child and how I want to make a difference in the lives of all children, that has all the makings of a beautiful day. And that’s how we build a future.

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