“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.
[click to continue…]
by Tim on February 25, 2010
Not surprisingly, we’ve had a rough go of things lately. So I was thrilled to get our child care person in for about four hours yesterday. We know we can hand the reins of the house and whatever else to her for a few hours and do whatever we need to do. We’ve found a variety of ways to reduce the amount of money we spend on various things during the month, and we’ve used some of that savings to pay for occasional in-home child care, which lets us have a few opportunities to get some things done and generally get a break.
Yesterday for me was the truest form of respite care. I’ve been so tired lately that I feel delirious much of the time. All the lack of sleep that went into all of us traveling to my grandmother’s funeral and all the extra emotional exhaustion that went with it has just about done me in. Having her come over is always a godsend, but yesterday felt close to a miracle.
She got here about 12:30, I did a couple of quick chores, and then fell into bed, piled on the blankets, and tried to sleep. It took me a while to unwind enough to rest, but finally I could feel myself sinking into something close to unconsciousness. I slept until about 5:00. I barely even knew who I was when Mary nudged me and told me it was time to eat dinner. I probably could have slept another 24 hours.
I imagine that most of us develop a pretty high tolerance for lack of sleep, mental and physical exhaustion, and all sorts of stress. We build up the equivalent of Kevlar armor like our own brand of callouses. If we don’t, we fall apart. I’ve drunk enough coffee lately to keep half of Central America in business and eaten enough donuts and sweets to stone an elephant. It’s another coping mechanism. But I’m realizing that this is like charging all that energy we put out on a credit card; eventually you have to pay it back somehow.
One of my words for the year is ‘bamboo’, but I’ve been more like a gnarled, old tree lately. While I have been giving myself some latitude within the understanding that this is so much about grief, I can’t keep this up. Life doesn’t wait around for us. It’s not like I can tell the kids to take a couple of weeks off from being themselves while Daddy regroups. Finding ways to grieve and rebuild myself at the same time is just something I have to start figuring out.
Mamaw frequently gave me a piece of advice that I often didn’t care to follow. Don’t dwell on the past, acknowledge it, move on and move forward. She tried to have this attitude about everything. I don’t think I got this at all until after the J-Man was diagnosed. I guess I liked holding on to all the psychological debris of my life as if not to would be to deny who I am. But I think what she was getting at is that holding on to all that stuff requires us to pay a steep toll, and paying it costs us and our families too much.
I invested a lot of time and energy doing what I needed to do for her obituary and funeral because I wanted everything to be perfect for her and to honor her in the best way I could. I am content with how things turned out. I feel like right now she would be gracious and thankful to us for that celebration of her life, and with her next breath she’d kick us in the behinds and tell us to get moving on with life because our families need us in the here and now.
I finally understood today that we honor her not with how much sleep we can get by without or how much coffee and donuts we can consume, but by the way we build up our families, do good for others, spread some laughter, and keep trying to leave the world a little better each day. She left us the blueprints for a well-lived life. It’s about more than survival and getting through the day; it’s about living a life that others will want to honor and celebrate, just like we did hers.
by Tim on February 6, 2010
My grandmother is still with us, but her health continues to worsen. She’s had some OK days, but the last couple of days have brought a more significant decline. I’m starting to expect the phone to ring any minute. I’ve constructed ways to detach myself from that inevitable moment. I realize I’m pretty good at walling things off. When I drop those defenses, I start to lose it. I guess I’m the kind of person who has to grieve a bit at a time.
Between scrambling to finish work projects that have about sent me over the edge to dealing with snow and snow days (and the resulting craziness that comes from everyone being off schedule), I’ve had plenty of opportunities to wrap myself in other things. Even when life is really busy, I normally still try to write or read something or reflect about life or do something that grounds me. Now all I want to do is zone out and forget about the clouds hanging over us.
I’ve assumed the responsibility of writing my grandmother’s obituary and funeral bulletin. Writing usually comes easy to me. This feels more like climbing Mount Everest. I stare at the blank screen and feel paralyzed, but I know if I wait until after, I won’t be able to do it at all. I try to do the less emotional parts like listing surviving relatives just to make some progress. When I get into more complicated details like colors and pictures and design, my brain just shuts down. It’s taken me days just to be able to sit down and write a blog post.
The most important part to me is that I don’t want to write some dry account of her life. It’s not like we get to publish a small novel in the paper, but it needs to say something worthy of her. In addition to the factual details that go into obituaries and funeral bulletins, you do get room for a paragraph or two to summarize someone’s life. But this is not just any someone; this is the someone who has kept all the mismatched parts of our lives woven together since the day we were born.
A year or two ago, somebody turned the idea of six-word stories into a popular phenomenon. The idea is to try to tell an entire story in six words. It sounds impossible, but I’ve read some fantastic ones. (Samples here via Wired and here at the Six Word Stories site) Then came the natural extension of that – six-word memoirs. (the Smith Magazine project and illustrated ones at NPR) The suggestion I read: write the six-word story of the person’s life and let that guide how you write their obituary.
This certainly isn’t easy either, but there is something more focused and less daunting about it. You can’t encapsulate an entire life this way, of course, especially not one full of rich stories that touches countless people. It does, though, let you capture one particular theme or characteristic or truth about someone that can speak to the whole of their lives. In a world full of words and noise, perhaps this is the path to speaking simply and clearly to what’s most essential and fundamental about someone and what they stood for.
So while I sit down this evening to reflect on that for my grandmother, I encourage you to try it out for yourself and your kids. Thinking about your life, what would your six-word story be? What would it be for your kids? What about just something that happened today? What about six words about autism?
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 Mary on January 4, 2010
Thank goodness. We can say goodbye to the Aughties. Except for me. I’m trying my best to say goodbye to the Oughties instead. Good riddance Oughties!
You know – the Oughties. He ought to be able to do this by now. He ought to be speaking in sentences. He ought to be able to say entire words and not just word beginnings. He ought to eat more than the same 6 foods he’s been eating forever. He ought to be able to get his hair/nails cut without freaking out.
I don’t actually watch the show “Desperate Housewives.” I DO, however, turn the TV to channel 211 every night before I come upstairs, because that means the DVR lets me rewind Good Morning America to the beginning to watch while I’m eating oatmeal the next morning. Last night though, I turned it, and watched about half of Desperate Housewives because I got sucked in. Remember though, I didn’t see the beginning of the show, and I don’t know the characters. Here, I’ll go to imdb.com to look up the characters because otherwise I’ll be talking about “some mom” and you won’t know, because I didn’t know. Hold on…
OK, I’m back.
So, when I turned it on, for some reason Gabrielle’s husband is trying to sneak their daughter off to camp. Something about getting her away from auditions. Blah, blah, lots of crap where mom wants daughter to be something she’s not… and eventually Gabrielle realizes that her daughter doesn’t have to do anything special to be special… she just is. Nice. I liked that.
This next part though? I literally sobbed.
So Lynette is in the hospital because something is going on with her pregnancy. She dreams about what would happen if the doctors came in and told her that the baby was going to be handicapped. How would she make it? She dreamed three separate vignettes – the first about making the baby do painful physical therapy, and I started crying then. She was upset because the baby wasn’t meeting milestones, and the therapist said something I’ve heard a bazillion times. “Don’t think about what he OUGHT to be doing. Don’t compare him to other children. You’ll drive yourself crazy doing that. Focus on HIM, and what he IS doing.” Lynette had to walk away, and her husband followed her. He told her to think about the future… to think about how she would feel if she knew she hadn’t done everything she could to help this child. Lynette walked back out to the living room, and took over again from the therapist. “I can do this,” she said.
Yeah, this is me sobbing. So teary even now that I can barely type.
The next vignette was of her son, about 10-12, who comes into the kitchen and demands a sandwich. Lynette is busy, washing dishes, and asks him to wait. Kid gets belligerent (as a pre-teen will), and eventually she tells him he can make his own sandwich. Kid has the curled hands and crutch associated with Cerebral Palsy, so I’m going with that being the disability. Lynette refuses to help him, and he does make a sandwich… with much drama (being a pre-teen) but also, with much difficulty because of his physical limitations. She stands there, gripping that sink until her knuckles are white, refusing to turn around… and he succeeds. It’s so incredibly hard for her to force him to do something difficult. We all want to make things easier for our kids.
I’ve been that mom. Both of those types of vignettes. I’ve been there. I hope I handled it that gracefully.
The last vignette is of her son graduating from law school. He thanks his mom, because she refused to give up on him.
That’s something we hope can happen someday with the J-man. Not necessarily that he go to law school… but that he understands why we push him the way we do. But that is still a long way away.
But he will succeed in his own time, and in his own way. I ought to remember that.
