“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 Mary on January 15, 2010
When I was pregnant with Dale Jr, I started forcing the J-man to walk up and down the stairs by himself. I just couldn’t carry him. It took us a LONG (echo long, long, long) time to get him to go up the stairs, and coming down the stairs was even worse. Finally though, he did it. He held our hand, and walked up or down the stairs.
After Dale Jr was born, there was a point where everyone was sick. Everyone. And so we carried the J-man up and down stairs because he was that sick. He was pitiful – when we were downstairs, he would just lie on the floor and look sad. He had no sense of balance at all. And so, of course, he started to depend on us to carry him again. And, like idiots (or, you know, people who just wanted to get through the day!) we did.
I decided this week that the J-man was going to start going up and down stairs by himself again. The reason? Our incredible babysitter (Ms. Cindy) was over, and the J-man wanted to show me something while I was upstairs working. So while Ms. Cindy was occupied feeding the always hungry Dale Jr, the J-man just walked up the stairs. By himself. We were all shocked. But I figured, hey, if he could do it when he wanted, then we were dealing with a behavioral issue, and not a sensory one.
So we started. And it was AWFUL. He shrieked and cried and twisted and refused. I tried using Veggie Sticks as a reward. He didn’t care. I tried putting Legos on the steps. He would come up a step, pick up the Lego, and then go back down the step. He did that all the way to the top… and then went back down the steps because, Silly Mama, Legos don’t belong on the steps! But he refused to come off the steps into the second floor hallway.
I ended up picking him up, putting him on the steps, then closing the baby gate, so the only way he could go was UP. Oh, he tried to slither under that gate. He tried going through the spindles at the bottom of the stairs. But the only way to move was UP. The first time, it took us over an hour to go up the stairs. I went to the top and folded a load of laundry. I read some blogs. I purposely DIDN’T listen to the screaming. And it was hard. For everyone in the house.
Going downstairs was even harder, because I worried that he would fall. So I sat him down and showed him how to bump down on his bottom. He didn’t like that. I was so frustrated that I grabbed his feet and pulled him down each stair on his bottom, one at a time. He was SO upset by this that he tried to scramble back up the stairs! Tim had to do a lot of rocking in the mancliner to soothe.
We went two days like that. Diapers went a little longer than they should, because it was just so much work to go up and down the stairs. And then Wednesday morning, I put him on the stairs, and he walked down them. He freaked out at the bottom, but he calmed down pretty quickly. Same with going up.
Thursday, he walked down the stairs calmly when I walked with him. He walked up the stairs calmly when I walked with him.
Today, I guess he decided that it was time for a diaper change. He walked to the steps, walked up them by himself, and shook the gate until I opened it. I opened it, and he walked to his room for me to change his diaper. Then he walked back down the stairs. And we celebrated.
I know, a lot of people think, STAIRS? Really, you’re celebrating stairs?
Yes. Yes, we are.
by Mary on January 13, 2010
When we first heard about Signing Time [affiliate link], it was because I had read about teaching a baby to sign – that it reduced frustration for them to be able to communicate before they could speak. I ended up thinking that all of those children had to be BRILLIANT to be able to learn to sign, because even though the J-man loved watching Signing Time, he couldn’t (or wouldn’t) sign. He didn’t have the fine motor skills to pull off doing any sign that had finger movement or shaping.
The only sign the J-man ever used was “more” and I’m still not sure that he understood what he was asking for. The only time he ever used it was when we were playing a game where we carried him around and stopped suddenly, and he had to ask for “more” before we would move again. So he understood that we would start running again, but I think he just thought the sign meant something like “go.” Once the J-man was able to actually say the “g” sound (for GO!) he stopped with signing “more.”
In the span of something like 5 minutes, I just taught Dale Jr to sign “more.” He was sitting in his high chair eating (also something new this time around), and I asked if he wanted “more” or “all done” – signing each thing. (Our “all done” is like an umpire making the SAFE signal at home plate, because the other way to do “all done” looks too much like stimming for the J-man to ever differentiate.) Dale Jr would open his mouth like a baby bird in a nest, and I would pop in another Gerber Puff, each time signing “more!” before.
Suddenly, when I asked if he wanted “more” or “all done” he clapped his fists together. “MORE” I shouted, and gave him another puff. “More or all done?” Again, he clapped his fists together. “MORE!”
Then, before I could ask the question, Dale Jr looked at me pointedly, and clapped his fists together. “MORE!”
I called Tim downstairs to make sure I wasn’t reading more (heh) into the situation than it warranted, and Dale Jr showed Daddy that he could sign “more” with a bit of resignation – all, “I just want the dang Puff, people, so could you give it to me?”
And, we celebrated.
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 17, 2009
I wrote in “In Dreams Awake” about a dream I had that came true not long ago. Now I wish to write about another dream I had a few weeks back. It’s rare for me to remember dreams at all, and nearly unheard of for me to remember them in this much detail. So here is a dream that has not come true, at least not yet.
To unpathed waters, undreamed shores. – William Shakespeare
Dreams are illustrations… from the book your soul is writing about you. – Marsha Norman
I dreamed Mary and I were sitting in folding metal chairs – the gray and somewhat wobbly kind you see by the hundreds in church fellowship halls and outdoor events everywhere. We looked down and grass began to appear under us. The grass became mottled by dirt – bare places in the expanding grass – and was made uneven by tree roots slowly emerging from the ground.
Around us, buildings slowly began to reveal themselves, forming the boundaries of what became an enormous quad, a great lawn also ringed and permeated by oaks and magnolias. Then a sea of chairs coalesced all throughout the quad. Soon they were filled with people – an endless variety of families it seemed – from every generation and from every walk of life you could imagine, but none of whom we knew. They formed fully into being, sitting in perfect geometric arcs around the quad like a great parabola with a stage as its focal point.
A large, square formation of neat rows of chairs filled the space between the arcs and the stage, filled with students in their navy gowns, mortarboards, and tassels. Graduation? But for whom? I realized the ceremony was already well underway. Some students were lined up on the lawn to the right of the stage, waiting for their turn to cross the stage. One student was walking away from the stairs on the left side of the stage, holding her diploma in her hand, waving it triumphantly to her family. I could finally see the stage clearly, and it was filled with the usual dignitaries – principal, administration, teachers.
I still didn’t know for what person we were there. We have numerous nieces and nephews, friends working on higher degrees, or was this the past? I didn’t have a clue.
Then I noticed something very odd. No more names were being read. The ceremony had just stopped. The middle-aged man at the podium did not call out the next name. It was like everyone was holding their breath. Instead of impatience, I could feel anticipation swelling through the formation of students. You could see heads turning throughout the crowd. Many of them craned their necks up and around; some stood up to get a better look. The crowd knew something important was about to happen – everyone, apparently, except us.
For the longest time, nothing seemed to happen. But everywhere we looked, every single person was smiling. Many had tears in their eyes. All of them radiated happiness, drinking all this in like people savoring history. Then I realized that all of those jubilant faces were now looking at us.
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by Tim on October 2, 2009
My health has just been for crap lately, so crawling out from under my self-pity and general groaning – which I’m not good at in general – has required some serious conscious effort on my part.
Thankfully, the J-Man has his ways of snapping me out of it with yet more astonishing new things he’s achieved lately. His last two weeks at school this quarter – which ended a week ago – were like a quantum leap forward for him. His progress at school has been extraordinary, and it seems like every day at home yet another new beam of light comes shining out from him.
As I noted one of today’s great achievements, I got to thinking about all his recent accomplishments and newly-developed skills. I decided to start trying to write them down so I could both celebrate them and snap myself out of my self-indulgent funk. So, here are a handful.
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