“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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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.
by Mary on December 5, 2009
For the past few days, we have been schedule freaks. OK, everyone except Dale Jr. He does what he does, when he wants to do it! For everything else, we have pre-planned, pre-made where available, and pre-decided, all before the kids get out of bed in the morning, or after they go to sleep at night.
The J-man’s teacher (hi Mrs. Jennifer!) and his OT (hi Mrs. Jamie!) came over on Tuesday afternoon, and had some good, solid, concrete suggestions about his current sensory issues. The suggestion that we all thought would be the best was to use a picture schedule at home like they do at school. I mean, we already had what we thought of as “routines” but those routines seemed to leave a lot of downtime, and downtime is NOT what the J-man needs right now.
So, man, have we kept him on track! And it seems to have helped, to a certain extent. We’ve still had the “stop, drop, and flop” happen a few times but there has been less stimming and random screeching. WAY less putting hands over ears. I am, however, tired of Pinky Dinky Doo, since we can only have the TV on during the scheduled TV time now, and that’s all the J-man has wanted to watch. Thankfully, he asked for Rachel today. YAY for Signing Time!
We’ve added an enormous amount of brushing. It seems to calm the J-man immensely, and he really likes it. I think if he could request it, he would. In fact, sometimes when we’re done with the “brushing and squishing” routine, he hands the brush back to get whoever is doing it to start again – and so we do.
We’ve changed our eating style – we used to eat in the living room, on tray tables, watching the evening news. My mother will be pleased to know that we now eat at the table, together. This means I have absolutely no idea what’s going on in the world right now, since, as I mentioned, if the TV is on, it’s Pinky Dinky Doo. I don’t stay up late enough to watch the 11 PM news. Tim is up that late, but it’s because he’s working. With all of the hands-on parenting, he’s not really getting any work done during the evening the way he used to. Yeah, our schedule still has some kinks to work out (like, when to MAKE DINNER for the parents) but I’m hoping we figure something out soon because otherwise, Tim just doesn’t sleep, and that’s bad.
Last night, it all came together because Dale Jr took a nap right about the time I needed to put dinner in the oven. The J-man and Tim were outside, swinging, and I scurried around getting everything ready. Right before dinner was ready, Dale Jr woke up, so while I fed him, Tim got dinner out of the oven, then I finished everything off and we sat at the table. The J-man finished his nuggets and applesauce quickly, then asked for “sticks.” When I gave him the container of sticks, Dale Jr was starting to get fussy sitting in his high chair.
Tim and I have given up talking during dinner because we’re shoving food in so fast, but we weren’t anywhere near done at that point. The J-man calmly picked up his container of sticks, walked around the table, sat down at the chair beside Dale Jr’s high chair… and stayed there, looking at him while eating. Since Dale Jr ADORES his big brother, that was enough to make him happy, at least for long enough for us to finish eating. The J-man saw someone in trouble, thought through how he could make it better, and did so.
That action brightened our day. It was just a little light, a match struck, but it stayed lit long enough to light a candle. I look forward to many more candles burning brightly.
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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