OT

Proprioception and Calming Techniques

by Tim on September 14, 2011

I don’t know what percentage of our day is concerned with managing our J-Man’s sensory challenges, but I’m sure it’s a lot. Just about every autistic child I know struggles with one or more of their major senses even under ‘normal’ conditions. Of course, this can make already stressful situations when they occur even more unbearable.

If you’ve been on the autism road for a while as a parent, you know that managing and helping calm these sensory challenges can mean all the difference between successfully accomplishing something and your child coming undone. I don’t think I’m overstating things when I say that these sensory issues are the knife edge so much of their lives is balanced upon, and it doesn’t take much to knock them over that edge.

One of the things that parents new to autism in their families need to make sure they understand is that these sensory issues are very real and may be very painful to your child. It can be difficult to understand why something bothers your child so much as it sometimes doesn’t seem logical to us. Why would a fabric, for example, that most of us wear every day cause a child to be in agonizing pain? Sensory challenges are particularly hard to appreciate and figure out for people who don’t really have them. In time, you will figure out more and more about what bothers your child even if you don’t get the why behind it.

However, there will be many people in your family and circle of friends who will continue to think your child is overreacting and that you are coddling them by catering to their sensory needs. In what I think is a mantra you should hang on your wall, “It doesn’t matter a microscopic damn what they think.”

So when things come undone for your child – whether it’s in a store, a family gathering, a supposedly low-key night at home, or anywhere else – there is frequently a strong sensory component to it. When you call upon your arsenal of calming techniques – which you should always be adding to and refining – these sensory issues will often be the first thing you address.

Like with pain management for any of us, it’s important to stay ahead of the pain by proactively managing it. Once it gets away from you, it can spiral down in a hurry. So your best calming technique is to watch for the early warning signs and head things off before your child loses their ability to cope with a situation. It’s much, much harder to help bring them back than it is to try to manage it from the beginning.

However, that’s easier said that done. Even with our best efforts, things are going to fall apart. Expecting our kids to manage the sensory bombardment they face every day is like expecting them to climb Mt. Everest. So then what?

Every child is different, so there’s no right formula for how to do this. It comes with experience and a healthy dose of analysis. Make notes of situations in which your child really struggles. Think about things in the environment where the problems occurred and look for commonalities. Some may be obvious (e.g., public places that are crowded and noisy) others may be much less so (e.g., stores that contain a lot of the color red).

Start by thinking about what you can do to help calm – even a little – the things that cause your child distress before things spiral into a big problem for them. For example, can you go shopping at a less crowded time of the day, such as mid-morning? If so, can you use that time to practice shopping trips? You could structure the trip to the store, say you’re going to get three things and visually present that to your child, get them, check out, and leave – little trial trips to the store to help your child hopefully grow in comfort.

I’ll tackle a sense that has always been an issue for us, and one that can present challenges for both child and parent in numerous contexts – proprioception. Then I’ll say something about how various techniques have helped us help our J-Man in stressful situations.

But you might need a definition for proprioception first, especially since it’s a sense many of us take for granted. Proprioception is essentially your body awareness sense. It helps you know where you are in space. To give some simple examples, if you’re standing up, it helps you know you’re standing, where your body is, and that your feet are on the ground. If you’re sitting, it helps you know your body is in the seated position and in contact with your chair. Sounds trivial, but if you’ve ever had this sense of falling when you’re in bed at night, you might have some idea of what it feels like when your sense of being horizontal and in contact with your bed goes away. It startles and scares you. Now imagine life being like that for long periods of time, all the time, and not just for a split second right before you go to sleep.

One of the best ways to deal with an underdeveloped proprioceptive sense is to help your child feel more aware of their bodies. This can be wonderfully calming both in everyday situations as well as stressful ones. Our J-Man responds to deep body pressure and ‘heavy work’, lifting or moving heavy objects around. A lot of autistic children I know benefit from techniques in both of these areas. If you think about it, this makes perfect sense. If you’re standing up in a room and then someone hands you 50 pounds of sand to hold, you’re going to be a lot more aware of your body and how much more you’re pushing against the floor. Obviously some children will hate it, and it’ll be the exact opposite of what they need. As with everything, you have to tailor a plan specific to the needs of your child.

Deep pressure involves a wide variety of activities that apply some sort of additional force to the child’s body. Our J-Man responds to firm pressure applied to a large portion of his body. Some examples of things we do or have done in the past:

* Full body hugs and squeezes
* Carrying him upright in your arms like you would hold a baby to your shoulder
* ‘Squishes’ where he essentially lays down on the floor, couch, or chair and we lean our body weight on him
* ‘Burrowing’ which he usually initiates by crawling in behind you while you’re sitting on a couch or chair
* Piling blankets and pillows on him, sometimes while leaning on him and the pile
* Joint compressions (with or without brushing) – Click for YouTube video. This is similar to what we’ve done with a few variations.
* His car seat – he likes the coziness of his car seat, which is still a five-point harness in a seat that wraps around him more than a lot of kids’ seats
* Pea Pod – something that looks like a kid-sized inflatable boat that he can sit or burrow in
* Wrapping him in something like a blanket

Obviously this list isn’t comprehensive. You could also try a compression vest or compression clothing. For those of you who’ve watched the Temple Grandin movie, the squeeze machine is based on this whole concept of deep pressure.

And here are some examples of heavy work. These are more pre-emptive calming techniques that we could use to try to head off potential meltdowns, but they can work well when things start getting stressful.

* Letting him pull on something heavy that will be hard (or even impossible) to move – pulling a wagon filled with books, for example
* Letting him carry heavy objects like encyclopedias and phone books
* Letting him rearrange furniture
* Wearing heavy, cloppy shoes – he wears these heavy, all-terrain, Stride Rite shoes, which add weight and give him a lot of feedback through his feet. I know plenty of kids who wear heavy shoes and work boots.
* Weighted vest – Simply a vest with weights built into it to apply some uniform, downward weight to your child that they wear around for a while. We don’t use one now, but we did for a while. Note: You should only use this under the supervision of an occupational therapist.

These are just some ideas that have been great sensory calming aids for us. As always, your mileage may vary. Your friendly, neighborhood occupational therapist should have a wealth of information about sensory challenges and sensory defensiveness, proprioception and all the other senses, and the huge variety of things you can try to help your child in difficult situations.

Luckily for us, our J-Man is resilient. Once removed from a stressful situation (extreme example – the dentist), he recovers quickly, but he has to get out of there first. If he can get to a ‘safe space’ when things are bad for him, he can regroup admirably. Last dentist trip, once we got back into the car and got him in his car seat, he started to relax. Eventually he just shut down (went to sleep, but mostly just shut off) for about 15 minutes before we pulled in our driveway. It’s amazing how much he’s learned about helping himself through tough situations. Our kids can teach us a lot about what they need!

There’s a lot of trial and error involved in finding the right formulas to help your child in various situations, and what might work in one context may not in another. I doubt this is a news flash to many of you, though. There’s never a straight path from Point A to Point B! But start by identifying the senses that your child has the most difficulty managing, look for how those senses are negatively triggered in various situations, and then try everything you can think of to address them. In time, you’ll develop your ‘go to’ list of things to try in familiar and new situations.

If you stay totally centered on your child and learning what’s hard on them and what helps them feel better, you will figure a lot of things out. Remember, it’s not about whether you really understand (though it does help) why something upsets them or helps them, it’s that it does. Bounce ideas off therapists, teachers, and other parents. They can help you see some things you might have missed. In the end, you want to be able to head things off before they get bad, and if you can’t, then have ways to bring things back when they start spiraling down. It’s a challenge, but we’re used to that!

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One Inch Closer

by Tim on August 26, 2010

The journey of a thousand miles begins with one step. – Lao Tzu

We recently had our annual IEP meeting, which we are thankful beyond words is actually a fun experience for us. We feel like we completely lucked out in getting great teachers, therapists, parents, students, and administrators!

While the J-Man had several very rough patches over the last school year – precipitated by becoming a big brother and realizing this little person in the house was actually staying – he did make great strides in some areas. And we are so happy and proud of him that he’s starting off this new school year with a bang.

We brainstorm his educational goals for the coming year with his teacher during the couple of weeks prior to the IEP. We don’t officially write anything until it’s time for the actual IEP meeting, of course. Brainstorming beforehand speeds up the meeting. We just start out with whatever array of goals we have for the coming year and then look at which ones are appropriate for the IEP. Examples: “We’d like for him to eat some new foods” isn’t really an educational goal let alone a measurable one, but it’s an informal goal we know we’ll work on together at home and in the classroom. “The J-Man will imitate up to 8 motions in familiar songs/fingerplays with minimal prompting 50% of the time” is one of his actual goals for the next school year.

Not surprisingly, those educational goals for the IEP are for areas in which he is ‘behind’. As we’ve said numerous times in the past, we have no idea what a ‘typical’ five-year-old is doing at this age to have some benchmark to work from in creating those goals. So we just list everything in our brainstorming and figure that part out later.

We already knew his reading skills have been above, if not well above, age level for some time. With him being only minimally verbal, it’s hard to know with much precision. As a result, we’ve not had any reading goals in his IEPs. Over the last year, he’s been able with decreasing assistance to write a couple of letters, particularly ‘E’ and ‘F’, and he’s working on some more. (The school uses the Handwriting Without Tears method, which has worked brilliantly for him and the class.) So a goal Mary and I put on one of our lists was to expand his writing skills to additional letters. What we didn’t realize initially is that the J-Man’s writing skills are pretty much at age level right now! Woo hoo! That’s news you love to hear! Of course we’ll be working on those additional letters, but we can cross that off the formal, IEP, educational goals for now.

There was a specific achievement we were particularly proud of him for. He’s graduated from his fine motor skills work with the occupational therapist! He’s able to do the various ‘age-appropriate’ tasks asked of him! He’s even renowned for his wild finger dexterity because he’s been known to hold a bunch of snacks in his hands and manipulate other objects at the same time. To think that we started years ago where he refused to even hold anything and then struggled to learn every new task because of all the fine motor planning and sensory revulsion involved. This really is a momentous achievement for him. We are so proud!

Sure there are a lot of areas in which he still struggles, but that’s OK. We’re getting there, and he’s bravely working to overcome all the obstacles still in front of him. It’s important for each of us to celebrate every achievement our kids make no matter how seemingly small those may be. To our kids they can be like winning the Super Bowl. And we should jump up and down and run around in the confetti with them.

Every great milestone they reach comes from the seemingly unending line of inchstones our kids have strung together, one hard-fought step after another. One more second of eye contact today may be one inch closer to more comfortable social interactions as they get older. Just getting the J-Man to put his lips together as one of a number of things that have to happen to form the ‘p’ sound is one inch closer to better communication. A bite of a different food, sleeping 30 minutes longer, a rare embrace, a beaming smile, a calmer trip to the store, and any of a multitude of other victories bring us one inch closer to our kids being able to express their wonderful selves as completely as they can.

This is an ultra-marathon we’re all running, but if today or tomorrow or whenever we get even one inch farther down the road, someday we’ll get to points like we just had when we look up and realize we just tripped over a landmark. We can look back in the direction we came and see how far we’ve come. And then we can face forward again out into that unknown and say like the explorers of old, Well, we made it this far and we’re still in one piece. Let’s keep going and see what’s next.

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[Urgent Update! The deadline to submit comments about Sensory Processing Disorder (SPD) for the DSM-V is Tuesday, April 20, 2010. If you haven’t yet done so, please send your comments very soon! This is not only critically important for autistic children and adults but for all people who struggle with sensory challenges. Make this part of how you observe Autism Awareness Month. See below for the background information I posted last month on this issue and how you can submit your comments to the right place.]

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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{ 2 comments }

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

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 […]

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

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 […]

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