Taciturn Tuesday - Biological Basis for Sensory Processing Disorder

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Taciturn Tuesday: SPD It's Not Just for Kids

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Using Unproven Therapies

image via: http://thegospelcoalition.org/blogs/tullian/2012/10/24/politics-is-not-a-cure-all/

The subject of using unproven therapies has come up at our home. Sensi has had some toileting regression this past month. Both with constipation and with soiling her pants. I talked with her Theraplay therapist about options. We can't use Mozart for Modulation as we have done in the past, since she is supposed to refrain from listening therapies after AIT.  We decided to try a two week brushing/joint compression trial.

image via: http://cafebonnie.blogspot.com/2009/10/what-is-wilbarger-protocol-or-brushing.html

I have looked and I have found no proven studies that brushing works. When it was suggested by her Occupational Therapist (OT) the first time, way back almost a year ago, I just ignored the suggestion. I figured we had other things to spend our time on, rather than trying to fit another therapeutic program in our schedule. Sensi's tutor and I have talked at length about unproven therapies and how many people still try them anyway. AIT and brushing are both unproven, but when I look at the idea behind the therapies they both made sense for Sensi at the time.

image via: http://www.especialneeds.com/sensory-motor-vibra-derm-massager-therapy-brush.html

I chose to try brushing since our choices are limited by the previous AIT and the trial is limited.  I figure it can't hurt and if it does help it is worth the time. I also know that there are very strict guidelines on using a brushing protocol for sensory defensiveness. We are not following those guidelines. We are doing what works for Sensi and our family. This entails twice daily brushing her body with a soft brush and then following that with joint compressions. I have both the deluxe brush and the cheap "nail" brush that is found at discount and dollar stores. Sensi has shown no preference for one over the other, but I do give her a choice of brushes before we start. That choice makes her more open to being brushed. I talked with her OT in school and they said that in the course of the school day the staff could fit in a daily brushing session too.

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The aim is to make Sensi more aware of her body so that she pays attention to the need to go and uses the bathroom promptly when this occurs. She has had a history of ignoring her body's needs to void and has been a variable eater. She has no set pattern to her toileting, like some other children. It has been very difficult to toilet train her mostly due to this inattention to her insides. This sensation of your internal organs and awareness of them is called interoception. Apparently, she has a lack in this area and we are trying to help her be more aware. 
We are a week into the two week trial, and I can say that there have been days that I missed a brushing session here and there. That being said, I have seen an improvement in her toileting. I will let you know if there are any huge breakthroughs. Although as you all may know, many of the gains our children make are small and slow. It is when you look back over a month or a year that you see the real progress being made.



resources:

Jessica Davich U of Wisc. Stout studies:
An Examination of Brushing Program for a Child with Sensory Sensitivity
A Comparison of Interventions for Children with Tactile Defensiveness


The_SPD_Companion-Wilbarger-Protocol.html
www.spdbloggernetwork.com/2011/05/18/the-poop-on-interoception/

Sensory Saturday: Our Latest

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These weird looking things are head massagers. They are kind of fun. It feels better if you do it to yourself than to have someone use it on you.  SensiGirl keeps it on her desk and uses it when she is reading. This is the latest we have tried in sensory gagets and tool. We also tried at the same time this:

The brush massager has turned into a noisemaker and a toy.  SensiGirl doesn't like it when I try to use it on her at home, so I let that one go.  It will probably be donated to the Occupational Therapists' office, she lets them use it with her there. I know that you can get just the all white brush attachment part from the dollar store as well as lots of other sensory toys.  It seems to me that the occupational therapist at school go shopping for supplies at the dollar store quite a bit.
Another thing to pick up at the dollar store is shaving cream. She gets to get all slimy and then smells clean afterwards too! This one is always a favorite of  my SensiGirl:

image from: http://totschool.shannons.org/wp-content/uploads/2011/01/Shaving-Cream-Marble-Paper-4.jpg

Sleepless - The Tide Is Out

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I think we can all agree that once you have children you almost never get enough sleep. Either they keep you up by being up themselves or keep you up with worry.  I thought I had a good handle on things lately, but short me some sleep and the tide goes out and all I can see is all the crap on the beach.

SensiGirl was at the speech therapist yesterday and I made the mistake of asking where SensiGirl stood age wise with the speech skills. I was told she is still at 2 years old. Her sticking point is "Wh" questions. A two year old should be able to answer those questions, SensiGirl doesn't very often. She can answer to "What season is that episode?" when she wants to watch something on Netflix, but she won't answer "wh" questions for the teachers or therapists who assess her. Her therapist did say SensiGirl has made some gains that aren't measurable, such as increased spontaneous speech and her vocabulary are stellar.

Also SensiGirl hasn't been sleeping regularly since she started the latest EASe listening CD. Last night she was having her own party at 4:30. I can't sleep when I hear her do that, so I was up until she fell back asleep at 6:30.  I wonder why she wakes up at night so often, although usually I am not worried because she is happy when she is awake in her room, singing and chatting to herself.

 While I was up listening to her, I was thinking about should we have her see an audiologist, how are we going to pay for therapeutic music therapy, should I  have her see a neurologist and get an EEG to test for seizures.  I know of a couple of kids who have been diagnosed with seizure disorder apart from their autism diagnosis. They seem to be doing much better; they are making great progress with speech and language processing.  I will broach the subject the SensiGirl's doctor the next time we go in, or call for a referral.  I think it is like the allergy tests we did when she kept breaking out in rashes when she was a baby.  We ruled out that it was anything she or I was eating, so we could drop the subject of diets and move on from there. If we get an EEG and it comes back normal, we will proceed as we have been.

There are a million things to worry about with a typical child, and a million and one with a neurodiverse child. I didn't post the other day because the tide was out and I had to just take care of myself and my family that day. Once I get some sleep I am sure that I will be back in the swim of things.

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Lice and Your Sensikid's Head

If you have a child with sensory issues you have a world of trouble when the note comes home from school. In our case, it wasn't even a note. Random Guy went with Grandma to get his haircut while SensiGirl and I were at occupational therapy. The stylist found a few nits and stopped cutting his hair. I found a few more and treated Random Guy with the generic pack of lice treatment.  I knew to do this from a friend who has been having the lice plague go round her school for two years. She recommends the double pack.  My friend also reported that lice infestations are down now that the school sends a note home for the WHOLE grade when a child is found to have lice. Before they did it just for the individual classes.

The next treatment was for SensiGirl.  We didn't know if she had any nits or not.  SensiGirl has light brown hair, it was almost an impossible to see the nits and to get her to sit still and keep track of where was combed and checked and where wasn't. I did my best and then treated her as directed with the Ladybugs prevention kit, and combed again. She is not a cooperative subject to say the least. She is very defensive about her hair being combed.
Of course there is all the cleaning and vacuuming. I had to accomplish most of that while they were at school, but some had to be done before they went back, (their beds.) There was a lot of screaming about the vacuum. I was on a mission, I had to do it.

I asked Random Guy's teacher to move his coat hook to the end of the row. Since SensiGirl doesn't let me really, really nit pick, I have to work the prevention angle as best I can.  I explained how our family would be a weak link if we didn't get on top of prevention since SensiGirl doesn't let me keep the treatments on for as long as I am supposed to. When the note came home from SensiGirl's school, the teachers told me they had checked her head. I checked it again, and ran the Robicomb and then did the Ladybugs treatment.
Terri Mauro at about.com has some extra tips:  http://specialchildren.about.com/sensoryintegration/headlice

Here are the items in my arsenal against lice:
Robicomb- This is good way to check if you can't see those tiny nits very well. Careful, it does have a little electric charge while it is running, so keep it angled as directed to avoid any twinges. If you zap your Sensikid, you won't get another chance to use it anytime soon. It's handy for checking yourself for nits too.
Cetaphil- This is the backup when you can't use the pesticide treatment within the recommended time frame. Here are the instructions for the treatment method.http://www.smsd.org/schools/belinder/cetaphiltx
Generic double pack lice treatment kit - It works just as well as the brand name stuff and you get two treatments, so you have one on hand for the next time it happens. (It will.)
Plastic hair clips - To keep the hair you have checked apart from the hair you haven't.
Plastic shower caps - To put on heads while the treatments are on, to keep chemicals from running into the kids eyes, and to keep down the smell.
Ladybugs prevention- This is what I do when the note comes home and I can't find any nits. I foam up the kids heads when it is bath time. (It is bath night whenever that note comes home.)  Then every morning before school I spray their hair before going to school. So far so good.  I suppose you could use some kind of peppermint essential oil or regular Listerine (as the nurse at our pediatrician says she did,) for prevention. Grandma was as freaked as I was, and bought the whole kit from the salon. So we have it on hand now. The kids don't mind being sprayed with the peppermint oil blend spray if they know it will keep me from nit picking them. http://www.ladibugsinc.com/

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If you seem like you are stuck in a cycle of infestation you can always call the professionals. In our area we have at least four service providers for lice removal. It is expensive, but you do what you have to do.
I hope what I wrote or links I gave can help you keep your Sensikid lice free, or help make the treatments easier.

Combat Stress

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This is what I feel like at the end of the day, and sometimes during the day when I am finally still and alone. If I am with my kids I have to be on alert,  apparently just like a combat soldier.  The times I have been off target didn't have the same dire results as someone in combat, but I did relearn why I can't relax unless I know the kids are off to school or asleep.  It doesn't feel like I am at war, and  I am not saying that I have to do anything close to what those in the military do in their daily lives.
 I do know I put myself last a lot of the time and it is hard to put yourself first when you have to stay a step ahead of what's going on.  It's not the same as post traumatic stress disorder, instead it is the daily running on alert over a long period of time that causes caretakers to have stress related health issues.
In a recent study they tested moms of adolescents and adult with autism.  They followed a group of moms who care for adolescents and adults with autism for eight days in a row. Moms were interviewed at the end of each day about their experiences and on four of the days researchers measured the moms' hormone levels to assess their stress.  They found that the hormone associated with stress was extremely low, consistent with people experiencing chronic stress such as soldiers in combat. These findings can be read here:

http://www.disabilityscoop.com/2009/11/10/autism-moms-stress/6121/

Just recently I let my guard down when I was sick, I nodded off on the sofa and awoke and realized what had happened; I found SensiGirl  upstairs using Random Guys scissors to cut off her hair.  There have been a few moments like that over the years.

image from: http://soyahair.com/images/istock_9555917xsmall_3_nbcd.jpg

I think the common factor caregivers have with the combat soldiers is not being able to let your guard down, not to let your attention to get too divided,  nor forget about what you are doing or what is going on in your surroundings .  If I don't keep track of SensiGirl's movements I will pay with a mess to clean up at the least, or a trip to the doctor at the worst. We've gone to the doctor for peas up her nose a couple of times. She doesn't do that anymore, as she grows up her messes grow developmentally with her.  I clean up slimy hand lotion messes off SensiGirl and her bedroom floor at least monthly. (I have really dry skin and if I don't keep the hand lotion  handy, well it doesn't get used and I am back at the doctor's office with cracked hands.)
I try to give her more sensory things to do, like helping make the pizza dough, sensory toys,  or Sensory Science Friday, but every time I relax and forget about things, there it is, one of her messes. Painting the kitchen in ketchup was memorable.

image from : http://0.tqn.com/d/chemistry/1/0/m/T/1/ketchup-prank.jpg

 The good that comes out of the the studies and the comparison it makes is caregivers and their doctors recognize the daily stress Moms' experience is real.It may make them take the effects of stress from care-giving a special needs kids seriously. The illnesses that come from constant daily stress are real. Take care of yourself. Now, I think I will go take a nap. (It's okay, they are at school.)

Sensory Strategies: Hidden Senses

We all recognize the five senses:  touch, smell, sight, hearing and taste (or tactile, olfactory, visual, auditory and gustatory.)  These are at the base of the developmental Pyramid of Learning.  Did you know there are two other senses?  They are vestibular and proprioception.  Those are the "hidden" senses.

from Taylor/Trott 1991, image from:http://home.comcast.net/~momtofive/Image13.gif

  The vestibular receptors are located in your inner ear. They give you your sense of movement, balance and gravity.  The proprioception receptors are located in your muscles, tendons and joints. They give you your sense of where your body is in space and what your body parts are doing. If you have a kid who is acting out physically, it may be to stimulate or calm these systems. Sometimes what looks like bad behavior is an involuntary reaction to what's going on with the sensory system.

image from: http://giantleapsot.com/files/RazorAKickScooterRed.jpg

Some activities to try to instill a sense of calm to the vestibular system are linear, like driving in a car or riding a scooter.  Rhythmic movements can be calming too, such as rocking in rocking chair.  Some alerting activities for the vestibular system are ones that involve a change of direction or are rotational, like jumping on a trampoline, swinging or riding a merry-go-round. (Good luck finding one around here.)

image from: http://dabbstrek.files.wordpress.com/2010/07/img_5720.jpg?w=450&h=337

Some activities calming to the proprioception system are heavy work: activities that involve deep pressure to muscles, joint compression, slow stretch, heavy resistance, and slowly alternating push/pull.  Put those bodies to work: remember push, pull, carry, lift.
Alerting movements include jerking movements, activities that are fast paced, with quick or unexpected changes. Climbing is alerting to the proprioception receptors.
Good alerting activities are jumping games, sports, rocking or rolling on a chair or on a ball. Using an exercise bike or a trampoline is fun, ours get bounced on while playing Wii or watching TV.  You can have the kids crash into pillows, or sandwich them between pillows or bean bags. Carrying heavy things like a weighted ball or groceries are great! Animal walks and wheel barrow walks also wake up the proprioception system.

image from:http://wellingtoncycleways.files.wordpress.com/2011/04/wheelbarrow-w-o-wheel.jpg

You don't have to be flush with cash to do most of these activities.  We have only invested in a limited amount of equipment for our house. We have a play set with swings, a slide and a climbing ladder in the backyard, scooters for both kids and two mini jogging type trampolines in the house. We have rolling chairs in the office that we use for rolling and for spinning. We have lots of pillows in our house and we use them to squish and squeeze. Playgrounds are one of the best things to do, and they're free.  I also have been having the kids bring in a bag or two of the groceries when we go shopping together, carry the tote bag from the library, or their backpacks from school.
Great books about things you can do with your child to help integrate their systems doing regular things are the The Out of Sync Child and the The Out of Sync Child Has Fun: Activities for Kids with Sensory Processing Disorder.

If you have sensory questions or hints to share, I am going to start Sensory Saturdays soon.

resources: http://www.theperfectplaygroundny.com/blog/
                SPPS Occupational Therapists
                Children's Theraplay MN

Be a Sensory Detective

Do any of these quirks seem familiar? You too can be a Sensory Sleuth!  My SensiGirl has 9 or 10 out of 17. I personally have 4 of these as a grown-up; the Mall of America can make me break out in a cold sweat.   Sensory Processing disorder can get in the way of a lot of learning. It's hard to pay attention in school when your body is sending you a bunch of these signals.

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image via: http://lostandtired.com/2011/07/22/sensory-interference/sensory-processing-disorder/

The above doesn't even take into account things that send normal kids into a funk. Cutting teeth, ear and sinus infections, getting a cold or the "flu" or a growth spurt can sap one's tolerance reserves. Sometimes it's even being overtired. SensiGirl was having the hardest time with our tutor on Tuesdays. Well, our tutor's schedule changed so she couldn't come Tuesdays anymore. SensiGirl isn't as cranky on Tuesdays and Wednesdays are a bit better too. It was just too much to go to school, occupational therapy and work with her tutor all in one day. She hit her limit.

Since I have sensory issues too, it has made it a bit easier for me to figure out what is bothering SensiGirl. I notice when things are loud and echo-y and it can bother me. Smells have been a problem since I was a kid and have gotten worse since I was pregnant for the first time.  Also, I swear, I was starting  to get all jumpy and was itching to take a crack  at the mom at speech therapy who was chomping her gum while we were in the waiting area.

It doesn't take much imagination, for me, when SensiGirl is having a meltdown to figure what the triggers might be. If you don't have sensory issues yourself it can be a bit harder to figure out what your kid's deal is. I make sure to warn both my kids when I turn on the blender or the vacuum.  My husband, the Atomic Punk forgets on a regular basis and much screaming ensues during the running of appliances. I will write more in depth about sensory strategies in another post.  It is a huge subject.

Since SensiGirl has been seeing Occupational Therapist now for a few years in school and additionally outside of school for a year, I am getting better at being a Sensory Detective.  I have professional resources to bounce the incidents around with, recommend remedies and to test out her progress in a safe way. We just started to explore the Veggie Tales mystery.
Look to the environment when you are getting an outrageous behavior, because sometimes it's not a behavior so much as an involuntary reaction to sensory overload. Also check and see if your child is physically okay, an undiagnosed illness can throw anyone for a loop.