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Sensory Processing Disorder and the DSM-V – Call to Action

by Tim on March 15, 2010

I’ve said in the past that Sensory Processing Disorder (SPD) – sometimes also referred to as Sensory Integration Disorder – had little or no chance of making it into the upcoming DSM-V. (DSM = Diagnostic and Statistical Manual of Mental Disorders; V = 5th Edition) Turns out, I’m wrong, and I’m not sure when I was last this pleased about being wrong. We have an opportunity we won’t get for almost another generation, so get ready to act.

In short, the DSM is where standard, accepted diagnoses for a huge range of conditions come from. It is the bible for most everything we deal with medically as parents of autistic children. The DSM is one place – and for autism the place – where those five-digit codes (aka ICD-9 codes, e.g., 123.45) you might see on medical forms and reports come from, and it’s the manual that governs our lives with autism more than any other in the health care system. More importantly, this is how things get billed to your insurance, recorded in all sorts of forms as your children are evaluated and treated, or otherwise processed in the realm of health care. Essentially, without one of these codes, it doesn’t exist.

Because SPD isn’t in the current DSM (4th Edition), for all intents and purposes, it doesn’t exist. Of course, all of us with sensory kids know better, but your insurance provider doesn’t care. If you’ve been getting sensory-oriented occupational therapy paid for by insurance in the U.S., your therapy provider has most likely been creatively coding it to get it paid for.

If you’re like us, it’s been billed as more general occupational therapy, of which we get 30 visits a year. Once that runs out, tough. Pull out your wallets. OT limits set by insurers often assume a temporary condition, which obviously does not apply to autism, sensory processing issues, or most anything else we deal with. This makes a 30-visit annual limit profane. And that’s why this is so important.

The SPD Foundation has done an amazing job getting everything organized so you can know exactly how to make your voice heard and how we can all work together to get SPD in the new DSM. The American Psychiatric Association (authors of the DSM) is now accepting public comments on SPD, so this is the time to act. The more data and stories they collect about children and families living with and trying to overcome the challenges of Sensory Processing Disorder, the more likely they will be to include SPD and do so in a way that will benefit our children and millions more.

Here are the links:

Please read these pages carefully before you go and submit your comment to the DSM publishers, particularly the tutorial on how to prepare your comments. For example, don’t talk about insurance benefits; even though that’s critical to us, the DSM authors are there to create standards for medical diagnosis and not wrestle with the nightmares of health insurance.

And remember, the public comment period allows everyone, not just parents, to submit something. Parents, adults and adolescents with SPD, physicians, psychologists, occupational therapists, teachers, researchers, and anyone else who works with or diagnoses persons with SPD can comment. So share this call to action with all those people you know.

The DSM is only revised about every 15 years. That’s not a typo. So we won’t get another chance at this until probably the late 2020s. This is a defining moment for autism and all children with Sensory Processing Disorder, whether they are autistic or not. Go tell your story, and let’s make this happen.

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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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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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It Takes a School Village to Make a Great IEP

by Tim on August 27, 2009

After all the stress, frustration, and general drama around last year’s IEP process (our first), this year’s was the complete polar opposite. It is beyond description to have a team of caring, creative, smart teachers and therapists who have the best interests of your child at heart working with you.

I’m not saying last year’s team – compiled by the county school system with no one on the team from the J-man’s current school – weren’t good people. Far from it. Some we liked quite well, but with a couple of people, we did have some adversarial relationships, and it was clear that it wasn’t exactly a cohesive unit of people used to working together. We got off on the wrong foot with our case manager – and never really got back on the right one – and we so totally distrusted the process at one point that we never really quite got over it.

The end result last year was that we completed the process knowing that without all the work we put into it and without all the pushing and standing firm we did, we very likely wouldn’t have gotten what was appropriate for where the J-man was then.

What we didn’t know back then was that we had gotten the IEP Powerball as an added bonus, almost by sheer luck (albeit with a system we admittedly gamed a bit). We got a school and a set of teachers and therapists beyond our wildest dreams.

To say this has been an amazing first year of preschool for the J-man would be a serious understatement. He continues to grow and thrive and learn and do things that astound us. He has worked so hard, and he has had the best teaching and support we could have ever dreamed of.

Around the table the other evening for IEP 2009 were Mary and I, his lead teacher, the teaching assistant, his speech therapist, his occupational therapist, and the school principal. We talked about the J-man’s many great accomplishments and the areas that still remain a challenge for him. In my mind, we were remembering and celebrating the great year he had and diving in with hope and enthusiasm to plan for the future.

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Be Our Vest, Be Our Vest! We Love Our Weighted Vests!

by Tim on July 6, 2009

[Personal note: I know I haven't blogged in eons. The chaos of work, the J-Man going on break from school, the serious need to work on some of his behavioral issues, illnesses, and the overall bedlam of baby-parenting have been exhausting. Just wanted to let people know we haven't died or something!]

The adjustment to life as the Flashlight Four has been a challenging one to say the least. Our primary concern has been how all these changes would affect the J-Man as – not surprisingly – even small variations in routine can be difficult for him, and a new baby in the house is decidedly not a small variation in anything.

Things were going along more or less OK, but then we started noticing some significant changes in his behaviors at home. Nothing aggressive or in any way what you might call ‘negative’. It’s that he was so completely overloaded that he would run around screeching, stimming like crazy, spinning in wild circles, and pretty much literally bouncing off the walls. He couldn’t sit still for more than about two seconds for anything, not even for his favorite shows (which is a sure sign something is amiss).

When his teachers said they were noticing similar changes at school and that it was really affecting him there, we knew we needed to concentrate our full attention on finding something to help him get through this.

His OT at school suggested trying out a weighted vest at school and at home. If you’ve never heard of this, it’s worth getting some background information as we’re now total converts to weighted vests as a tool that may help sensory-overwhelmed kids. (BTW – To use one at school here, it has to be ‘prescribed’ and supervised by the OT as otherwise it’s considered a restraint, which is not permitted. Don’t ask; I don’t understand that rule either.)

I found an article (“Weighted Vests for Children with Sensory Issues”) and some additional information on commercial sites at eSpecial Needs and WeightedVest.com. (Note: I’m not endorsing their products as I know nothing about them, nor about anything advertised on these sites. We made our own vests – more below.) Research on the broader effectiveness of weighted vests hasn’t really been conducted to any real degree, so your mileage may vary for sure. All I can say is that our recent experience has made believers out of us.

We tried a weighted vest about a year ago, but the J-Man just walked around like a drunken sailor with it on. His gross motor skills were much less developed then, and the overall experiment was more or less an interesting failure. I think the added year of development and the resulting additional body weight made a big difference toward the success of our recent work. The OT last year did say that before age 3 is early to be trying this out and expecting to see much benefit. We’re very glad we tried it again now.

We borrowed the vest the OT had (I think her mom had made it) and used it both at school and at home for a couple of weeks. He’d wear it for about 20-30 minutes at a time about every two hours. We always tried to do some heavy proprioceptive sensory work while he was wearing it.

(For those still struggling with autism terminology – ‘proprioception’ is basically the sense most of us take for granted that helps us be aware of where our bodies are and what the various parts of ourselves are doing. Example: I’m aware that I’m currently sitting in this chair and that my butt is firmly in contact with the seat of this chair. Now imagine the chair slowly fading out of existence such that you are still in a seated position but you feel it less and less until you don’t feel it at all. Bet you’d seriously flinch and jump to your feet. Know that sensation of falling you sometimes get when you’re in bed and half asleep? Imagine that your kid feels that way all the time, which they very well might.)

At school, they often have him carry heavy objects around (e.g., old encyclopedias) or jump up and down on the mini-trampoline. He loves our little mini-trampoline at home (more accurately, in the kitchen), so he climbs on it and jumps forever. His current record is 13 straight minutes… And he much prefers it if you sing “Supercalifragilisticexpialidocious” and hold his hands while he’s doing it.

The change has been really quite remarkable. One of the teachers said something to the effect of, “We’ve got our old J-Man back!” He really has seemed so much more like himself.

Since commercial weighted vests can be very expensive, we decided to make our own. Or more accurately, we decided to sweet talk Mary’s mom into making them. :-) The basic construction of it is fairly straightforward, but neither of us know how to sew worth anything. Essentially, we (more the ‘royal we’ where we = Mary’s mom) got some heavy denim fabric and some thinner, more decorative fabric to go on top of that, made it into a long vest, and then rolled up the bottom and sewed in pockets to put weights in. Velcro along the back helps fasten it around his body.

Here are some pictures of the J-Man modeling. I thought the chili peppers were an inspired choice.

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For the weights, we took the 1/2-pound inserts out of some adjustable ankle weights (like these) and put one in each pocket. We think these are still too bulky – they make the waist really poof out and hard to velcro closed – but they are still less bulky than the other things we tried such as BBs, sand, pennies, and sinkers (fishing weights). Next things we’re thinking about trying are dense modeling clay and buckshot. (FYI – a digital kitchen scale is a huge help in figuring out the weights and getting them balanced all around the vest, something that’s very important.)

Between the weights and the heavy fabric, the whole thing weighs about 2 1/2 pounds. I’ve heard varying recommendations on how much weight to use, but the consensus of what I’ve been told seems somewhere between 5-10% of the child’s body weight. We’re kind of on the lower end of that right now.

I’d be interested to hear the experiences others have had with weighted vests. If any of this has made you want to try this out, talk to your occupational therapist. You shouldn’t start putting weighted anythings on your child without the supervision of a trained OT who can tell you whether this is appropriate for your child and their needs and what sorts of ‘heavy work’ would be most helpful to them.

As with most things, so much of our learning comes through trial and error, but we definitely feel we have trial and success here!

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Interrupting the Loop

by Tim on June 17, 2009

For quite a while now, the J-Man has been a Lego-maniac. We see this as a very good thing as he wouldn’t touch building blocks of any kind for forever – we suspect for a variety of sensory – particularly tactile – fine motor, and other motor planning/spatial relating sorts of issues. Like many other things, one day it just clicked and now he’s a building machine.

Our building fun currently comes with one significant issue we need to keep an eye on. He’s doing better and better with structured building activities based on a picture (build the simple structure in this picture – like six blocks of alternating colors in one column) or a finite number of blocks (assemble the blocks in this box in whatever way you want, but when they are all together, you’re done).

However, in ‘free build’ mode (here’s a bucket full of blocks, have at it), things can get much more difficult for him. He will sit there and essentially build the same structure over and over again until you stop him. It’s usually an impossible-looking, very tall (20-25+ Duplo blocks high often), skyscraper-like thing that is asymmetrical, defies many laws of physics and building codes, but that generally looks very impressive considering getting him to put two Legos together even a few months ago was nearly unheard of.

But since – despite his best efforts of steadying it with hands and even feet – the structure becomes too unsteady to stay upright. So it falls, breaks into several pieces, and then he tries to reassemble it back to where it was, which continues on to the same collapse of the same building and the repeat of the cycle.

One facet of this I’m not sure whether to be concerned about or not is the constant moaning he does while he’s building. He does vocalize in that way in other contexts, but not to the droning length it goes to while he’s building. He only pauses to breathe. I’ll admit it does wear on my nerves with a crying baby often nearby to add to the chorus. But besides that, this is an instance where reading his vocalization cues is hard for us.

Since he loves blocks so much, I feared interrupting this the other day, but I had to. His structure had the moment before collapsed into about four long sections, so I just took the open blocks bucket and said, “Time to clean up!” No real initial resistance, though he seemed to be largely ignoring me at first save for a brief interruption in the moaning. I just kept talking. “You made some awesome buildings today, and now it’s time to clean up! Daddy will start!” So I took a few extra blocks that were around the floor (not part of the original big structure) and put them in the bucket.

Then I said, “Now J-Man’s turn! Put in!” And much to my surprise, he hurriedly put those sections that had just a minute ago been part of that building and put them right straight into the bucket as they were. He then took what was left of the bottom of the building apart in a couple of quick motions and took the three pieces that left him with and put them in the bucket too. He grabbed the nearby lid, laid it on top of the bucket, and asked for help (“heh” or sometimes the halting but very interactive “Iiiiii wahhhhh heh”- “I want help” for the uninitiated) I pushed down on the lid until it clicked – and this bucket is hard to seal. In barely 30 seconds, the giant bucket of Duplos was cleaned up, mostly by him. Never would have predicted that one.

He sat there in his “I feel relieved” posture – upright, shoulders relaxed, eyes looking thoughtfully at something nearby, no stimming, no more groaning, and in a place receptive to maybe using some words if he feels like it. If he’s in a place where he’s really stressed and bouncing off the walls (literally), if we get him to where he’s in the relieved posture (through a whole repertoire of calming activities), it’s like J-man’s way of saying ‘thank you’. If you sit near him then, you can feel a real tenderness in his spirit that is the essence of who the J-Man is, almost like the real him underneath the stimmy wildman exterior.

OK, so one of the morals of the story. If you find your kids perseverating on something in a way that it seems like they’re stuck in an infinite loop, they may very well be stuck. Find a transitional cue and activity to end their loop and bring them to whatever the next thing should be. You may get resistance or meltdowns, both of which have happened here. But you also may discover what it looks like when you need to ‘rescue’ your child from their infinite loop. They may not know the way out, and if so, you have to show them. These are the sorts of decisions and actions they may rely on us to take for them until they can hopefully begin to learn that skill for themselves.

To the issue of Legos, a new Lego Store just opened here and I’m dying to go. I heard they built an 8-foot-tall Yoda for the grand opening. Squee!

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When the Only Thing Routine is the Lack of Routine

June 2, 2009

It’s hard to comprehend that Little E is four weeks old today!?!? Time flies! Perhaps it particularly flies when you’re too tired to understand the concept of time anymore.
We do seem to be getting some aspects of the baby’s sleep to a better place, so we are starting to get a bit [...]

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Shining More and More! Quarterly IEP Report

March 31, 2009

In our last IEP goals recap from last quarter, the J-Man had a great nine weeks overall and showed great gains. This past quarter just ended last Thursday, and our little superstar continues to make great strides toward what we thought were some pretty ambitious goals for this year.
As a refresher for those curious about [...]

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