“When you remove the impossible, whatever remains, however improbable, must be the truth.” – Sherlock Holmes
Meltdowns – or perhaps we should call them ’strongly, vocally, and dramatically expressed opinions’ – have become an all-too-frequent occurrence around here lately. I’ve read many posts and heard many stories from parents of autistic children talking about their kids just falling apart in some situations and the frustration and anguish those parents feel in trying to figure out why and what they can do about it. Previously, I’ve listened more as an interested conversation partner, parent of an autistic child, and friend, and I’ve also been thankful that this issue hasn’t much been a part of our lives.
OK, you can welcome us to the club now.
I started writing a post days ago on the stories from this past week, but every day things kept changing. Writing about all this became like throwing a Lego and trying to hit a speeding bullet. So let me take one particular episode and describe it, particularly because it illustrates how we figured it out. And in this case, the remarkable thing to me is that the J-Man and I primarily are the ‘we’ here. We discovered the solution together, and I’m quite proud of that.
Everybody here has been sick at some point or another this week with terrible colds. My head feels like a basketball someone is pumping up with an industrial air compressor. The J-Man has had similar-sounding congestion and an ugly-sounding cough these past couple of days. Dale Jr. has a nose that runs like a fire hose, and he refuses to nap. Mary is the least symptomatic, but also probably more exhausted than everyone else combined. All that is to say that everyone already had plenty of reasons to feel like dirt and have whatever meltdown they wanted to.
The specific meltdown I wanted to write about came later this week during the bedtime routine. We’ve kept the same routine for a long time with nary a problem for months. All of the sudden, he started to completely freak out during teeth brushing. I’d try to brush some more but he just became more and more apoplectic. You could see the desperation dialing up in him.
As a rule, if we keep the same routines in certain situations, that gives us a fairly finite set of things we can check for potential meltdown-causing issues. Bedtime is pretty simple and unchanging in our house. He comes upstairs, goes into the big bathroom, I take his shirt off, give him his pill, and then give him his two liquid meds. He went through these just fine as he has for ages. Then I brush his teeth, first with his toddler toothbrush with non-flouride toothpaste and then I ‘rinse’ out his mouth using a wet washcloth that I run around in there with my finger. I barely got the brush in and one or two passes on some teeth before he became frantic.
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March 3, 2010 has been designated End the R-Word Day. We encourage everyone to go to R-Word.org, join the tens of thousands of people who have taken the pledge, and spread the word to end the word to everyone you know.
The r-word is derogatory and demeaning toward our children and to everyone with intellectual challenges. The words we use in our everyday speech matter. We hear and read all sorts of negative language about our kids. It’s time to change that. Both Hands and a Flashlight has taken the pledge to work to eliminate the r-word and set a new and positive tone. We hope you will too.
Many of us are not without sin in having used this word in the past. I confess to my shame that I once did so. It is time that we all resolve from this point forward to eradicate the word from our vocabulary. Let’s commit ourselves to a new r-word – respect.
Take the pledge today, and for more information and resources see the Spread the Word Toolkit.
by Tim on January 18, 2010
I humbly ask Dr. King’s forgiveness for borrowing from his eloquence and for the meager quality of my own words as I draw from his gift to us, one of the most transcendent speeches in our history. All generations after him will be asked to tell about their dreams for our world. Here are some of mine.
Our futures are inextricably bound together. We cannot walk alone. And as we walk, we must make the pledge that we shall always walk forward. We cannot turn back.
Whenever local, state, and federal governments and the schools within our communities give us and our children so little and then tell us to be satisfied that we even get that, let us say, “We are not satisfied, and we shall not be satisfied until every child has a fair chance to realize their potential and all prejudice is washed away by the tidal wave of our determination and love.”
Let us invest ourselves fully in our families, go into our communities, and do the hard work that has to be done and not wallow in the valley of despair.
Though we face the difficulties of yesterday, today, and tomorrow, I still have a dream.
I have a dream that our children will not be judged by what they can or cannot do but valued for who they are, just as they are.
I have a dream that whenever someone either cannot or is not allowed to speak up for themselves, the very stones in the ground shall cry out and we will all stand and proclaim the immeasurable worth of all.
I have a dream that all persons with disabilities will be treated as equals and afforded equal rights and access in every aspect of their lives.
I have a dream that all children will be treated with respect and provided the education and services they need to express their gifts to the fullest.
I have a dream that wherever injustice is committed against an innocent child that we will respond tenfold with unity, conviction, and action.
I have a dream that people will have access to the vocational training and assistance needed to work and live independently and follow the path they feel called to.
I have a dream that schools will not have to hold bake sales and raffles to pay the bills and that teachers won’t have to buy supplies from the money in their own pockets.
I have a dream that teachers and therapists will be valued and paid at a level nearer to all the miracles they perform everyday.
I have a dream that more money will be spent on services and support for both children and adults.
I have a dream that whenever any of us begins to fall there will always be another to help them back up again.
I have a dream that instead of judging we will take the time to understand.
I have a dream that what unites us will be stronger than what divides us.
I have a dream that we will always be thankful for those who started on this path before us so that we might have faith that we can walk the road that still lies ahead of us.
I have a dream that no one will ever again be forced to choose between getting care and services for their children or buying food.
I have a dream that everyone’s voice shall be heard, regardless of whether it comes out of their mouths, their hands, a computer, or a picture board.
I have a dream that where so many now see despair, damage, and burden that we can instead all discover and proclaim hope, beauty, and opportunity.
I have a dream today.
by Tim on January 8, 2010
I think I’ve finally settled on my three words for 2010. Luckily, ‘timeliness’ isn’t one of them.
Proclaim – This is about committing to writing in many forms, whether that involves my writing projects, blogging, other social media, articles, writing letters to Congress, or anything else where I can speak what’s true to me and advocate about what’s important to me, particularly autism and children. And this is not just putting words on paper or screen; proclaiming is writing emphatically and ramming the exclamation point down into the table.
Connect – To personally connect with more parents, educators, therapists, specialists, technologists, and others who have similar experiences to mine and foster the relationships I’ve already made; to help people connect with each other so they can learn and get the information and support they need; and to connect people with quality online resources that help them become better parents, carers, educators, or therapists. This includes actually responding to my e-mail and our blog comments in anything resembling a timely fashion – which I’ve clearly and epically failed at for a long while now – as well as participating on others’ blogs.
Bamboo – This one requires a bit more explanation. Bamboo is – among other things – an important symbol in Zen Buddhism. It is very strong, flexible, supple, and resilient. It will bend under tremendous weight but not break and still be able to snap back to upright when the weight is gone. It responds exactly as it needs to under pressure, bending neither too much nor too little. It is the opposite of tension and rigidity. It has a profound ability to flex and adapt even to vast changes.
I wanted to find a simple word that for me captured the foundations for physical health, emotional health, and attitude. I think in order to be like bamboo you have to find ways to bring yourself more into balance, take care of yourself so your body can respond to things in the right way, practice a lifestyle that fosters calm, flexibility, and ease in the midst of great challenge and adversity, be open to opportunities and gifts that come from being a parent, and nurture a positive attitude about life.
Of course, if I manage even a fraction of any of that, I may try to cure cancer while I’m at it. 
But by trying to be more like bamboo, I think I’ll be a better father, husband, and friend.
One of the activities that pondering bamboo has led me toward is something I discovered called a ‘gratitude journal’. I at first thought of it as incredibly cheesy, but after doing it for just a couple of days I felt a noticeable change in my perspective. Being the geek that I am, I do this on my iPod Touch using an app – not surprisingly – called Gratitude Journal. (Link opens the App Store in iTunes – it’s 99 cents) Just open an entry, type some things that happened that day that you’re grateful for (shows up basically as bullet points), and you’re done. If you feel like it, you can rate your day 1-5 stars and drop a photo into it, though neither are required. It takes maybe two minutes, but I’ve found it a great addition to my day.
Have you decided on your three words for 2010 yet? Would love to hear them if you want to share!
by Tim on November 29, 2009
These past weeks have been a serious reality check for us. All of us have been sick, hurt, or both at one point or another. Not surprisingly, this has weakened both our physical and emotional defenses. That’s a nice way of saying that we’ve turned into a bunch of grumpy, rundown, sick people who aren’t coping well.
I tend to process things best by writing about them. This has been one of those periods where every time I sit down to write, my brain just locks up like an overloaded computer. If nothing else, I guess it’s made me appreciate perhaps a little of what days are like for those of our kids whose brains are overwhelmed most of the day every day.
It recently became evident that we were losing control of most facets of our life. The J-Man was obviously experiencing some significant changes to his sensory system, and seemingly none of them for the good. He seems to shoot wildly between wide-open, screechy, running around, stimming overload to almost totally shut down. It’s hard for him to find a happy medium. That on top of all of our physical and emotional wear-and-tear and stress so thick you could cut it with a knife, we’ve been fast reaching an unsustainable place in life. And then last week it became really clear that it was worse than we thought. (More on that in a second.)
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by Tim on November 5, 2009
It’s that time again when they update us on the progress of how the clinical definitions of autism may be redefined in the next version of the Diagnostic and Statistical Manual of Mental Disorders, or DSM. (Read more about this in our The Clinical Definitions of Autism, Asperger’s, and PDD-NOS post from a while back.)
The Neurodevelopmental Disorders working group for the DSM-V (V = 5th Edition) has an interesting list of issues related to ASDs that they are trying to reach conclusions on before the 2012 target date. (Note this is an older version of the list, but it’s still a fascinating read.) To say that whatever is ultimately approved for inclusion in this manual will affect the lives of both parents of autistic children and autistic persons is a serious understatement.
There has already been a lot of commentary and some controversy about this process. It does seem, however, that the working group assigned to revise the DSM for autism have tried to be methodical. careful, and sensitive to all the issues involved. Honestly, I think they were given an almost impossible task here. We won’t really know how well they succeeded until we see the first draft.
This NY Times article describes the latest controversial issue in this process as well as some ongoing ones. This most recent one has already drawn a ton of reaction and might easily be among the most talked about when the draft is released.
The big question being discussed now is whether Asperger’s as a specific, separate diagnosis will be left out of the next DSM. ‘PDD-NOS’ may also be going away. Without the draft actually existing yet, it’s hard to really dig into the real-world meaning of this, but for whatever these are worth, here are my comments about this and some other points.
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