“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 Tim on December 9, 2009
This past weekend, we hit a pretty big low around here. We’d been having all sorts of problems – on top of the myriad other sensory problems – with the J-Man pulling off his sleeper (not unzipping it, but just plain shimmying out of it) and diaper every night within five minutes of going to bed, peeing in his bed, and then just lying there. We’d go in, reclothe him, change his sheets, fuss at him, and put him back to bed.
For a while, this was enough. One cycle of him stripping down and us coming in apparently was enough for him to then settle in for the night – clothed – and sleep. There was the other issue that he’d strip the second he woke up in the morning and do the same thing. If we weren’t in there fast enough, it was time to change sheets again and clean him up as part of everything else we do to get him ready in the morning.
Then about a week ago, things really went downhill. He wouldn’t keep anything on while he was in the bed. We tried fleece sleepers with feet, without feet, two-piece pajamas, etc. and nothing stayed on. We’d check on him a few minutes after changing him and the bed, and there he was naked as the day he was born with his clothes and diaper wadded up in the crib with him. Finally, we ran out of clean sheets. We started laundry, but quickly he fell asleep. So, we let him sleep au naturel.
Next morning, he was wet, of course, but we marched him to the shower, cleaned him up, and went on with the day. Next night, same ordeal, so we just gave up and let him sleep that way again. After the last ‘argument’ with him about it, once we let him be, he fell asleep quickly. Same morning, similar trip to the shower and on with the day.
We weren’t happy with this since obviously he doesn’t have enough control yet to not wet his bed, but short of restraints, we had no idea how to keep his clothes on him. He’s widely known for his Houdini skills and feats of flexibility, trust me. We decided to pick the less bad option and let him sleep that way.
This is where the concept of ‘less bad’ takes a hideous turn.
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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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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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