Saturday, February 28, 2009

Enforcing Rule #1

Please see the earlier post for the details on rule #1

Sensory Mommy does not tolerate nakedness. So there are two choices:
1) A knock down drag out fight every day
2) Modifications to the daily routine to give Crash a sense of predictability and control.

I went with the second option (Although I have to admit we spent quite a bit of time on option one. The results were not pretty and we quite tiresome for all).

So, what did we do.

1. We made Crash a visual schedule using pictures of all the events that had to be completed as part of his morning routine and were very specific. We used characters from the movie Cars as well on the visual schedule to make it more appealing and motivating for him.

Items included on this schedule included:
eat breakfast
Take off PJ's
put on underwear
put on pants
put on shirt
get surprise

The rationale:
The order of the schedule was very specific. Having breakfast first gives him time to wake up. He did not experience a sensory overload right away because he was still in his comfy pj's from last night. We put the brushing protocol in to help alert/excite the tactile receptors in his skin. "Our skin is our largest sensory organ, followed closely by our muscles and skeleton, connected by our nervous system and governed by our brain. The sensory systems feed information from our environment, through sense receptors, and neural impulses via our nervous system, directly to the brain. The brain then organizes it, sends it back through the nervous system for use as understanding, adaptation, learning, and skill development." Wilbarger Brushing Protocol
From experience, we know that Crash's shirt is the most challenging item, so we placed two easier items before it and a surprise after it. He still states that he won't put on his shirt before we begin. I point to the other items and say don't worry about your shirt, your schedule says underwear first. By the time we get to the shirt, it is the schedule enforcing the routine and not me. Our surprises vary day to day and I never tell him what it is. Some days he can watch a special TV show and other days he gets a piece of string cheese. He is happy with whatever he gets. I can't say that this schedule works 100% of the time, but it prevents 99% of our knock down drag out arguments.

Rule #1

Humans wear clothing.

For most people this is a no brainer. We wake up in the morning, look in our closet, take a couple seconds to consider the weather and the events of the day and then get dressed.

The Police Officer finds his pile of clothes and attempts to independently get dressed each morning. There may be some complaining about how a particular item is too tricky to put on or items that end up backwards or on the wrong foot, but all in all a pretty low key event.

Crash on the other hand is very threatened by clothing and would prefer to run around the house naked (even when it is 30 below zero). When strictly applying Rule #1 all hell can break loose and screaming tantrums occur. This simple rule now turns into:
Rule #1: No bumpy clothes.
Rule #2: No tags on clothes
Rule #3: No jeans.
Rule #4: No khakis.
Rule #5: No sweaters.
Rule #6: No new clothes.
Rule #7: No clothing that has been washed too many times.
Rule #8: No seams in unusual places.
Rule #9: No squishy items.
Rule #10: No scary items (at any given point any item may be deemed scary)

Well what does that leave;
sweat pants, long sleeve soft tagless t-shirt, and seamless socks

However even when presented with items that follow all of the "rules" getting dressed can still be quite a production.

Book Review-Out of Sync Child

The Out-of Sync Child by Carol Stock Kranowitz

Do you know a child who plays too rough, is uncoordinated, hates being touched, is ultra-sensitive (or unusually insensitive) to noise or sensations of heat and cold? Many pediatricians and other experts are beginning to recognize a link between some of these apparently unrelated behavior patterns. Children with perfectly normal "far senses" (such as sight and hearing) may have, because of a poorly integrated nervous system, serious problems with their "near senses," including touch, balance, and internal muscle sensation. It's called Sensory Integration Dysfunction, or SI. The announcement of yet another new syndrome is bound to raise skeptical eyebrows--and with good reason. (How do we know which child really has SI, and which one just happens to share some of the same symptoms?) Author Carol Stock Kranowitz argues convincingly, however, that for some children SI is a real disorder, and that it is devastating partly because it so often looks like nothing so much as "being difficult." And, whatever the scientific status of SI, Kranowitz carefully details many routines and remedies that will help children--and the parents of children--who exhibit the behaviors described. This book is a must-read for all doctors, pediatricians, and (perhaps especially) childcare workers. --Richard Farr

Out of Sync Child- Introduction

I found this book to be very informative. It broke down all the sensory areas and then describes what it looks like to be over or under responsive in each area. There are checklists at then end of the chapter to help determine if your child falls into one or more of these areas. There are many anecdotal experiences for the reader to help in the understanding of the different areas. This is fast and easy read that I would recommend to anyone wanting to learn about sensory processing. My only criticism is it breaks everything down into nice neat categories. Nothing in life is nice and neat. My child fell in several different areas depending on the time of day. I later came to find out that that was typical. I appreciated the clear cut distinctions however when I was first learning about this area.

Maintaining the peace

Every police officer strives to maintain peace and harmony in his community. This is no different with our Police Officer. He has come to recognize some of the characteristics of "disregulation" in Crash and attempts to help him to restore the peace in our house. Take this conversation for example:

Police Officer: Crash, do you want me to brush you?
Crash: Yeah.
Police Officer: Do you want your arm or leg first?
(Police Officer completes the Brushing protocol)

Police Officer: Crash do you want squishes?
Crash: Yeah.

Click here to find out more about the brushing protocol

I find it very interesting that in this instant this 4 year -old identified when his brother would benefit from a specific technique and implement it from beginning to end in a very respectful and appropriate manner. He knows to ask before touching his brother and to give him choices so he feels in control of the situation. Way to go my little Police Officer. I will omit the all out brawl that happened a few minutes later over some favorite toy and bask in the glow of the moment.

The Cast

The 3 Year Old
I will call him Crash. He is a sweet loving and smart child who is working to successfully deal with the everyday challenges of living with sensory processing difficulties. He loves the Police Officer and often tries to be just like him (much to the Police Officer's dismay).

The Big Brother
I will call him the Police Officer. He is 4 yrs. old. He is also very smart and loving. He is his brother's best friend and worst enemy. He is is very accepting and flexible. He is his brother's protector and advocate. He strives to maintain law and order.

The Mom
I will call her the External Regulator, or Sensory Mommy for short.. She is constantly predicting what will happen and how that will affect Crash in order to help him learn to regulate his body.

Friday, February 27, 2009

About Us

This blog documents the every-day challenges of a family learning the "rules" of successfully living with a preschooler with sensory processing challenges. I chose the word rules, because his life is a series of rules that he has to follow in order to make sense of the world. Unfortunately for the "External Regulator" these "rules" are very difficult to decipher and fluctuate seemingly as the wind blows.

These "rules" make it possible for him to be very successful in some situations and very "disabled" in other situations. Are these rules good, or bad? Do they help or hinder? Should we push beyond the rules or stay within their safe confines? These are daily questions in our house and we are answering them differently on a minute by minute basis.

I hope this blog provides insight for others unfamiliar sensory processing issues and encouragement for other families learning how challenging it can be to cope and eventually overcome daily setbacks.

Our Story
We had an uphill battle to get to where we are today. Three years ago, I did not even begin to comprehend the scope of a sensory processing disorder. Sure, I'd heard of it, but I never understood how it impacts EVERY aspect of a child's life. I had to look at life through through a new set of eyes.

From day one we knew something wasn't quite right about Crash. His body was so stiff all the time and he screamed constantly. He was diagnosed with reflux at two months of age, and medicine helped a bit, but it didn't elevate all of our concerns. By 12 months, he wasn't saying any words. He wasn't even babbling, just screaming. Although he was walking, he was more like a walking disaster. You never knew what he was going to trip on or fall over. Even carpet to tile transitions were tricky for him.

Because of my work as a Speech Therapist, I had tools to help him communicate. I started using the Picture Exchange Communication System with Crash, and he made immediate improvement. I was relieved, but thought, "Most children do not need a picture system to communicate. What's going on here?" I talked with the pediatrician and he ran some tests to check Crash's hearing (everything came out normal). So if he can hear, why isn't he talking?

Banging Against Walls

I looked for help everywhere, but kept running into walls. Some experts said he was fine. Others said I could help him myself because I was a speech therapist. Some said he'd grow out of it. One said that unless he was autistic, there was nothing they could do. One offered speech therapy, but only on a limited basis. Crash hated it, and made no progress.

About the same time, more and more sensory concerns were beginning to eat away at me. Changing a diaper was cause for a Crash meltdown, and changing clothes was not much better. He wouldn't touch any of his food and was choking on anything that had to be chewed.

Finally, we had two breakthroughs. I found a local University with a Communicative Disorders Department. The clinic coordinator was WONDERFUL. She listened to my concerns and put together a team of students to evaluate Crash. I cannot speak highly enough of the services that this university offered. They respected the sensory concerns, identified areas for improvement as well as areas of strength, and developed individualized therapy sessions to help Crash attain his goals. Every session was packed pull of motivating activities to push him in all areas of his language development. He loved it, and made real progress.

About the same time, I discovered an Occupational Therapist who specialized in sensory processing disorders. Her resources helped us identify Crash's sensory concerns and develop ways to provide the type of sensory input he needs. This therapist helped us turn our basement into a mini gym complete with a jumping pit, swings, slides and crash pit.

Crash's language went through a huge explosion. I loved working at home with him in the sensory gym in the basement. The more swinging and jumping and crashing we did, the more his language developed. These professionals and their therapy experiences in combination with countless books, internet articles, and sensory integration/sensory processing conferences and workshops have gotten us to the point we are at today.

Looking Ahead
I am also learning that I can't do this alone. No matter how hard I work, I can't control the environment all the time. He will have to go to school and interact with others and I cannot be there to help him regulate. I am still reaching out for help, but I've learned I have to be an advocate for my son or no one else will. It's been quite a ride. We will see where the journey takes us, and we'll keep you posted along the way.