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Sensory Issues

Autism, Meltdowns, and Sherlock Holmes

by Tim on March 7, 2010

“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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Are You Smarter Than a Four-Year-Old?

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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Like a candle

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.

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Trying to Get Perspective

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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Is “Asperger’s” on the way out?

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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Who’s Gonna Ride Your Wild Horses?

by Tim on September 29, 2009

For a long time, I’ve been excited about trying hippotherapy with the J-Man, particularly since the horse farm field trip that originally got my hopes up was canceled due to weather last spring. After many months of waiting, our class was going again! Just our luck, it rained the morning of our field trip, which brought forth a long string of flowery language from me as I watched the weather report. But when the teacher told us at school that this farm has a covered riding area, I was all like, It’s on!

I was born in Kentucky, where you grow up at least in the vicinity of horses regardless of where you live or what you do. I’ve been on a horse like once, but I’ve found just being around horses to be calming. Not something I can easily explain. But with all the wonderful experiences I’ve read about or heard people having with therapeutic horseback riding, I have been looking forward to seeing how the J-Man would feel about it.

I confess that a lot of what I brought to this field trip was my own desire to find something the J-Man really loves, which brings with it a certain amount of selfish emotional baggage. I couldn’t help but have in my mind how I wanted his first adventure on a horse to go. It’s really not fair to him to hope for some revelatory experience every time we go do something new together, but I think it’s a natural part of our psyches as parents to feel like that. In a life filled with challenges, we want to help them discover what they love most and then go for it.

I’d call our first horse adventure a pretty good one – not revelatory – and one that we plan to do again. The farm has a good and caring vibe to it, and you can’t help but appreciate what all they do for special needs kids. They have a free event one Saturday a month where families with special needs kids – and siblings too – can come and ride horses and enjoy the farm. The horses almost seem to exude calm from every muscle, or at least that’s what it felt like to me.

The covered riding area was perfect for the rainy, gloomy day outside. Each of the kids took turns riding the horses – with varying degrees of excitement about it. I took the J-Man over to look at the horse he’d be riding (a beautiful, brown and black horse named Max) so he could get used to him while still in my arms. He was noticeably calm while we did this, even petting the horse – with a little nudging from me – without any noise or complaint or any real hesitation. His touch on the horse was slow, caring, and gentle. I would have given anything to know what he was feeling as he did that.

Max is not a very tall horse, which came in very handy. I didn’t measure him, but I’d guess maybe 5 feet and a bit. We chose him both for his calm and his smaller stature because we knew we’d be walking alongside the horse and holding the J-Man up there. He wouldn’t have anything to do with the helmet, so we just flanked him with arms and people.

When it came his turn to get on, he fought it some and protested, but I’ve certainly seen him fight things a whole lot more than that. The first lap around was primarily us trying to reassure him, help him calm down, and for us to not get stepped on by the horse. Just to throw in some humor of his own, Max deftly avoided a pile of manure by changing lanes and nearly pulling me into said pile while I was trying to sing the ‘Calm Down Song’ to the J-Man. (Thanks, Max.)

The second lap was a much different story. We felt his body begin to relax later in that first lap. All the good sensory gifts that horses can give were working their magic. On the second time around, the protests stopped, his face became thoughtful and serene, his back started to ease down into the saddle, and he held on to the pommel of the saddle instead of my arm. One by one, I could feel his little muscles unwind. Meanwhile, my heart was about to jump out of my chest with happiness.

You could tell he was ready to get off by the end of his two times around, and I took him down and gave him the biggest hug I could. And all the parents cheered for him because they know new and unknown things are so hard for him.

We tempted fate again by putting him on Max one more time a few minutes later. I think we didn’t allow the J-Man the necessary decompression time after a big sensory event as he was pretty upset the whole lap around. (We just did one lap this second time.) In hindsight, that was a lot to ask him to do in that time span, but there’s no way to know unless you try.

But, he did it. He stayed on the horse. He began to overcome those fears. He tried something very new and different. Getting on an animal that’s many, many times bigger than you – calm or not – is something I know a lot of neurotypical kids and parents would be too frightened to do themselves. And for that one lap around, he found something that right now only he really knows. But whatever it was, it was clear enough to us to know that we need to return and give it another go.

We plan to go again next month when they have their special Saturday event. Usually with him, the first time of anything stressful is always very difficult, but each successive time gets better. Given the meltdowns we can get just from moving his car seat to a different car, the fact that he didn’t have anywhere near that kind of reaction to the horse I think means something. What it means, though, only time and experience will tell.

For those of us whose kids can’t easily communicate what they love and what they don’t like, how they feel in new situations, or how they experience an event like this, this is largely what we have to do. We look for experiences that are geared to be affirming to our children and their needs, we go give it a try, and we see what happens.

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Blast Off!

September 23, 2009

During the last 2 weeks, the J-man has shifted into high gear. Suddenly, he can do some of the movements to the morning song at school. They’ve been singing this SAME SONG since, well, forever, and something just clicked. Now he is starting to follow along some of the movements with a slight physical cue [...]

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One Really Good Day

September 1, 2009

Our low-key approach to his birthday was a good move on our part. He seemed to enjoy this as much as any ‘observance of his birthday’ ever. (Definitely not a party animal.)
The weather was just achingly beautiful today. It never got above 76 degrees, was sunny all day, and felt like pure magic in the [...]

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