Monday, December 14, 2009

Enforcing Rule #7

Please read the earlier post for details on rule #7

Can life continue as normal when you never push the walls of the box? I have to argue No. In fact, I would say if you never push the walls of the box,life would cease to exist. But, can life continue as normal when you are always pushing the walls of the box?? Again I would have to answer NO.
There is a careful dance preformed every day with Crash. A give and take if you would. In the back of my mind I am aware of the decisions that are made throughout the day and if they seem to be limiting or expanding the box. I have to "give" if I want to "take." Crash can choose the pants, and I choose the shirt for example. I have to be aware of the shirts that have been worn that week and be willing to capitalize on the opportunity to expand the walls of the box by choosing a non preferred shirt. But, I have to acknowledge his resistance to the shirt, let him verbalize why he doesn't like the shirt and then come up with a solution. Something like, I understand that the shirt is scratchy and you do not like it. Please keep the shirt on for 5 minutes and if it is still scratchy we will change it.
Crash needs to learn to verbalize his feelings so he doesn't act out. I also feel he needs to have his feelings legitimized (even though I can not understand the feeling he is going through, it is real to him and therefore accepted by me as a feeling). I want him to one day be able to say I don't think I will like that shirt but I will try it. I am sure there will be bottom lines that he will not cross, but there again I hope he will be able to verbalize and explain. I just can not wear that it makes my skin feel like bugs are crawling all over it. That's a pretty clear picture to me about how awful that is and I would not push an issue like that. I just want to push to continue to expand the possibilities in life. At 3 years old, it is just to young to begin to limit everything.
I have noticed lately emotional outbursts when events do not occur as "planned" as well. Maybe he is just three, but he has a hard time if a friend decides to go play in a different room and will burst into tears. The unpredictability of the event to Crash was not manageable. He has a hard time decoding some of the social cues that most people aren't even aware they are following. By taking through situations that happen with Crash we are hoping to help him begin to understand some of these cues. Your friend wasn't trying to make you mad, he just wanted to play with the toys that are in the other room. Each person can decide the toys they want to play with and friends do not always play with the same toys together.

Rule #7



Rule #7: Life occurs outside a box

Life is never predictable. Just when you create a plan for the day something happens and the plan (or at least part of the plan) goes out the window. It happens so frequently that the little changes in ones life don't even affect us, we just adapt and continue. Take for example getting dressed in the morning. One of two things usually happens
1. I have already pre-decided what to wear.
2. I walk into my closet and look over the wide assortment of
clothes and pick something appropriate.
If something that I wanted to wear happened to be in the wash or the weather had changed and was no longer appropriate I quickly move on to another option. Life continues even though my plan changes. I adapt and my world continues. I may choose to go out for coffee later that afternoon with one of my friends. As I pull into the parking lot, I get a call that she has to cancel. One of two things usually happens
1. I go ahead and order coffee for myself
2. I continue on with my errands for the rest of the day and
reschedule coffee.
Again my plans had changed. I may be a little disappointed I can not get together with one of my friends, but again I adapted with little to no effort. My life is easily lived "outside" the box.

Crash on the other hand would prefer to live "inside' the box. It is quite all right with him to only have a small handful of acceptable outfits to wear, and even more acceptable to sit naked in front of the washing machine as one of THE outfits gets washed so he can wear it for the day. It would even be ok with him if this happened every day and he only had one outfit (as long as it was THE right outfit). If Crash were to have a preplanned activity canceled or changed at the last minute it would result in hysterical crying. After the recovery it would be quite all right with him NEVER to schedule a similar activity again.

Notice the walls of the box closing in??

Monday, November 30, 2009

Enforcing Rule #6

Please read the earlier post on details on rule #6

In our house we try very hard not to create situations in which Crash learns a contradictory rule to a rule that has been established. He is so smart. It only takes one time and the old rule goes out the window and the "new" rule takes over. So that eliminates choices one and two. It's pretty clear I will NOT accommodate the demands of a three year old, so that leaves choice 4. We will brush our teeth. I had a few options.

1. I could sit on top of him force his mouth open and do it my self. Personally that seems like a lot of hassle and child services probably wouldn't look to kindly on it not to mention the embarrassment if he told his school teacher how mommy brushed his teeth.
2. I could wait him out. You are not leaving this bathroom until you brush your teeth. Hummmm I think Crash is just as stubborn as I am so we would probably still be there.
3. I could take a tip from Super Nanny and put him in time-out. I told him to brush his teeth, he disobeyed, he has a consequence...Again I think we would still be in time out. Crash wasn't trying to be disobedient in my opinion. His long established routine had been changed without any warning. It doesn't matter how silly or small that change was it still occurred and his body went into it's automatic response of fight/ flight.
4. Luckily I saw this coming (in the moment). Although it is had and seems completely opposite to a natural reaction, I remained calm. I placed one hand on his back and one on his abdomen ( a technique that helps encourage deeper breathing. When he started to calm down we talked through the situation. He was able to verbalize the problem! Then we talked about the toothpaste. I put a drop on my finger and said look, its the same color as the tooth paste at home. He agreed. Then we talked about what his toothpaste at home tasted like. We looked at the NEW toothpaste and talked about what that might taste like. I tasted the toothpaste and told him he was right. after 5 min I asked him if he would like to taste a small taste. Wouldn't you know it...the toothpaste didn't kill him. He was able to brush his teeth and I was able to keep our tooth brushing rules in place.

Rule #6


Rule #6: You have to brush your teeth with whatever toothpaste is in the house.

No one wants to smell. Bad breath is a huge turn off no matter what your age. Tooth brushing in our house in not negotiable. Luckily we crossed this bridge ages ago and found a couple tricks like using an electric toothbrush to make this job easier. In this simple activity that occurs a couple times every day, I hadn't realized an inflexible routine had been established. It has been well documented that Crash has great difficulty with changes in routine. We try had to shake things up to keep him on his toes (at least until the changes in his routine begin to drive us crazy). So it was here in the middle of the tooth brushing routine that the "Crest vs. Colgate" war developed.
Crash loves the movie Cars, to motivate him to brush his teeth, I have purchased Cars toothpaste. I didn't think anything of it. Well, we got to grandmas's the other day and it was time to brush teeth and much to Crash's surprise was...CREST toothpaste. Uh oh...you would have thought the world was coming to an end. We have already established that it is not an option, you have to brush your teeth, so what is one to do...

1. Give in (it's grandma's house maybe Crash won't generalize the new rule that you don't have to brush your teeth)
2. Brush Without toothpaste (again hoping he doesn't generalize this new rule)
3. Go to the store and buy the RIGHT toothpaste (A 3 year old can't win)
4. Use the NEW toothpaste.

Getting Kids in Sync



Although this conference is now closed, I highly recommend it to any parent or therapist. Principles of sensory processing and clearly explained in terms untrained individuals can understand. There are a variety of techniques and strategies as well as pages of resources on sensory processing.

"A Sensory Processing Approach to Challenges Associated with Autism, ADHD, Learning and Behavioral Disorders This fun, informative and interactive seminar is designed for parents, therapists and other professionals. You will gain understanding of the basics of sensory processing and learn "ready-to-use" strategies to support learning, attention, social and emotional relationships and behavior in children. Genevieve Jereb, OTR, is an Australian-born pediatric occupational therapist who has lectured on sensory processing disorders, both nationally and internationally. She is also recognized as a childrens’ singer and songwriter, Genevieve uses the principles of sensory processing theory to create music, songs and rhythmic activities for children with attention, motor and regulation difficulties."

Tuesday, August 18, 2009

Specialists

The journey to specialists can be a long and frustrating journey with hopes of discovering additional information or alternative ways of doing things from highly trained and well respected individuals. This summer we were on this journey...
We waited and waited and waited and finally had our appointment with a developmental pediatrician and child psychologist. I had hopes of discovering more information about sensory processing and strategies to help Crash as he enters school. I came in armed with his IEP, school evaluations, IFSPs and reports from other facilities. I explained my concerns and after 10 minutes received a diagnosis of an anxiety disorder that would most likely require medication to control. How many years of school did it take to reach this diagnosis?? Of course Crash has ANXIETY! He doesn't process the world like a typical person. Things are always too loud, too squishy, too scratchy. He will tell you straight up things are too scary. Of course he has anxiety then about his shoes, or shirt, or messy food etc...He knows before touching things or experiencing things that it will not be pleasant.

The specialists say, this is a typical generalized anxiety disorder that he was born with and that you can not change. Medication can control the symptoms since it involves a chemical imbalance in the brain. Occupational Therapy doesn't hurt anything but isn't necessary. So...if I understand this right, Crash is fearful or anxious of tags, socks, snow pants, boots, shoes, coats, sweaters, sticky things...hummm interesting. Well, I thanked them for their opinion. I do understand that the medical communities views on sensory processing disorder is swaying more towards anxiety at this point in time and that their views seem to always be shifting.

I will concede the anxiety. I will not go as far as to call that the root of the problem or accept medication as my solution. I have seen changes (huge changes) with therapy, and am very happy to continue down this road.

Melatonin


One of the biggest changes this summer for Crash was SLEEP! When summer started Crash went to bed at 6 pm but didn't fall asleep until 9-11 pm. He was up several times a night and was terrified of the dark, his bedroom, his bed, etc... We would find him sleeping in the hallway on the floor, on the floor of our room, basicly any where but his bed in his bedroom. With one sleep deprived child in the house, you can imagine the snowball effect that can happen and how it can wreck havoc on an entire family. We were all a little on edge. Crash was already seeing an Occupational Therapist, but it really seemed as though we needed more help (or hard core drugs for everyone).

After bringing this up to Crash's Occupational therapist, she suggested trying melatonin (a dietary supplement). After consulting with Crash's pediatrician, we determined how much and when to take each dose. Melatonin is a
"neurohormone" that is produced in humans in the pineal
gland. It governs the body's circadian rhythms helping the
body ease into a restful sleep."

In other words...it takes a child who is typically high energy full steam ahead and allows them to slow the engines down and begin to relax. This occurs naturally in more people, but is very difficult for Crash.

Crash takes the liquid sublingual form (finding this gluten free was challenging and had to be ordered online) and after 20 minutes he is rubbing his eyes and ready for bed. He is becoming more flexible on his bedtime routine, stays in bed, sleeps on his mattress, and sleeps all night, and sleeps in the dark! (Granted he still sleeps in the hallway...but we will take that for now). A well rested family is a much happier family.

We're Back...

Ok Summer vacation is over time to get back to work...

Sunday, May 3, 2009

Rule # 5

Rule # 5: Life has order.

Most people plan ahead. They have a general picture in their mind about how their day is going to go and the things that they need to get done. At three years old, Crash has already figured this out. Unfortunately, for the rest of the family, Crash's "order" is THE only order. Or at least that is what Crash would like us to believe.
You see, Crash is a creature of habit. If Crash does something a couple times, it becomes ingrained in his mind that this is the ONLY way he is going to do it. These "habits" are very easy to establish and very difficult to change.
The worst part for Crash is when unexpected changes happen without any type of warning. for example, we were at church the other day and I left him and The Police Officer with some parents to go check on something. While I was gone, someone came to get all the kids for an activity in another room. Crash was operating under the rule that mom would be right back and he would wait with his brother until then. This unexpected change threw him into a state of chaos that he was unable to deal with. He ended up kicking, crying, and screaming on the floor completely throwing everyone in the room for a loop. No one could comfort him or calm him down. He was hysterical. Lucky for Crash his External Regular was quick to arrive and help him make sense of the world. He is very rigid in his thinking and finds it very difficult to adjust quickly to change.

So what are some rules has Crash created to maintain order in his life:
1. Breakfast must be eaten as soon as you wake up.
2. Baths only occur at night.
3. You must sing the good night song from the doorway.
4. Do not turn off the bedroom light until all covers are on.
5. The Police Officer MUST be tucked in first.
6. Crash's seat is on the right hand side of the table.
7. Crash's car seat MUST be behind the passenger side.
8. Milk must be served in a blue cup.
9. You eat yogurt with a serving spoon.
10. When driving home, you can not go down the hill.
11. You must get a movie first before finding books at the library.
12. You take the elevator up and the stairs down at the Y.

What's going on:
Crash needs predictability in his life. It helps him to organize and make sense of the world. When he feels organized he is better able to function. Because ordinary sensations to most individuals can be very unpleasant and disorganizing for Crash, he seeks out "rules" to help him cope. He uses these "rules" as his safety net to get through the day. Challenges with sensory processing are very difficult, because sensations do not always remain consistent. Sometimes a particular sensation may be acceptable and other times it may be over stimulating. Not only is Crash trying to make sense of this, but he also lacks the refined thinking skills to understand that just because dinner was a pleasant experience sitting in a particular chair or using a particular utensil doesn't mean that is the ONLY way it will be pleasant. He really is trying very hard to establish some sort of order to life, and although I do not always agree with it, or abide by it, I do acknowledge and respect it.

Sunday, April 26, 2009

The Gluten Connection???

Do I believe in the gluten free diet for kids with sensory processing disorder? This is a loaded question. So I will preface it by saying, I believe in the gluten free diet for Crash. I know families who have tried the diet and swear by it, and I know families who have tried the diet and think it is a HUGE waste of time. I think every family is different as is every child and their isn't one "right" thing out there that will work for everyone.

This being said, We saw a tremendous change in Crash after we began the diet. I can not solely attribute these changes to the diet alone because he was also participating in an intensive speech and language program as well as receiving private Occupational Therapy Services and had an intensive "Sensory diet" home program. We also noticed that his body may be reacting to gluten (frequent diarrhea, bright red cheeks). The pediatrician did some allergy testing and a minor wheat intolerance was diagnosed. The pediatrician was supportive of our interest in pursuing a gluten free diet, and encouraged us to research the connection between gluten and sensory processing as well. Within a couple months, Crash went from nonverbal to speaking in words and his behavior did become more manageable. I am not an expert in any of this, and certainly not able to draw a scientific conclusion, but it was enough proof for us to continue on with the diet. Of more significance to our family is the changes we see in Crash when he does on occasion ingest a small amount of gluten. On the rare occasions when this happens, his behavior becomes much more challenging and out of control. His cheeks again turn bright red and we are all well aware that he ate something.

So how did we do it?

Our entire family went gluten free. I did not feel it was fair for Crash to eat the cardboard bread and grainy cookies by himself. And so began our quest for "good tasting gluten free food." It wasn't easy in the beginning. We tried and eliminated several brands of cereal, bread, crackers, pretzels and every kind of pre-packaged item we could find. I came to the conclusion that I would have to make most of these items from scratch, however, we continued to try new items that came on the market as well. We also found gluten -free substitutes for common cooking items. Although it can be a daunting task, with a little perseverance and some good cook books gluten free cooking has become second nature and the food is actually turning out rather well.

Recommended pre-made items:
Glutino pretzels
Glutino flax seed bread
Glutino 4 cheese pizza
Glutino apple cinnamon cereal
Rice Chex cereal
Pamelas baking and Pancake Mix
Nature Path Home style Gluten free waffles
Bionature organic gluten free pasta
Quinoa
Rice crackers

Recommended cookbooks
Nearly Normal Cooking for Gluten Free Eating (I absolutely love the combination of flours that are used in this recipe book. There is only one combination and it works in every recipe.
The Gluten free vegetarian kitchen
The Gluten free Gourmet Bakes Bread
There are several different flour combination depending of the recipe in this cook book. There are plenty of recipes for bread machines as well as loaf pans.
The Gluten Free Gourmet Cooks Comfort Foods
I enjoy this cook book. Again there are several different flour combination depending of the recipe.

I have also found many vegan recipes to be gluten free or easily adapted. A favorite blog is the Fat Free Vegan Kitchen. Here the recipes are tagged if they are gluten free. Another blog I frequent is Karina's Kitchen-Recipes from a Gluten Free Goddess.

I would love anyone's ideas on products or recipes to try or interesting blogs or websites. I would also recommend that IF you are going to try this "diet" speak with your pediatrician first. Then, stick with the diet. You will not see changes in a day, and most likely not even a week. Give it a good 6 weeks or more of a strict gluten-free experience before forming any conclusions. Finally, try the food yourself. If you think it tastes awful, so will your child. Just because a brand may be called enjoy life doesn't necessarily mean it is enjoyable. Sort these things out before beginning the "diet" so you know what you are cooking and have options for everyone to eat.

Sunday, April 5, 2009

Book Review-Sensational Kids



Sensational Kids Hope and Help for Children with Sensory Processing Disorder (SPD) by Lucy Jane Miller, PhD, OTR

Sensational Kids is written by Lucy Jane Miller and occupational therapist. She describes sensory processing using language that is easy for everyone to understand not just therapists and other professionals working in the field. She provides a great deal of information on symptoms and warning signs and even provides checklists to easily organize the information. The author goes on to elaborate upon assessment an diagnosis. She stresses the importance of early intervention and goes on to discuss utilizing your local school district and the benefits of a comprehensive evaluation and the important role parents play. The next chapter is on intervention. She outlines some key principles and explains how important it is for parents to understand their goals for themselves as well as for their child in a family-centered treatment approach. A families priorities will literally become therapy goals. She ends this chapter by explaining A SECRET...a way to given children ultimately a way to learn how to modify situations as needed to help them function more successfully. A SECRET is an acronym that stands for:

A Attention
S Sensation
E Emotional regulation
C Culture
R Relationships
E Environment
T Tasks

This combination of internal and external influences can be manipulated by parents and eventually by children to address sensory issues and behavioral problems whenever they occur.

Although Lucy Jane Miller includes anecdotal accounts through out her book, the second section is dedicated to daily experiences of five children with different types of sensory processing. It allows the reader to take a look and begin to understand the every day challenges children with sensory processing disorder experience and how it affects the family relationships.
The final section of this book builds on the knowledge the reader has acquired in the first two sections and explains things more in depth and tries to sort out some frequent questions readers may have.
I enjoyed reading this book. It was easy to read and it contained checklist charts and tables to make the information easier to understand.




But don't just take my word for it. Check out this review

Sunday, March 29, 2009

Enforcing Rule #4

Please read the earlier post for details on Rule #4

No shoes. No shirt. No service.

That pretty much sums up life. It is not an option to go barefoot for your entire life. And we have already concluded that preschoolers grow while shoe sizes remain constant. Therefore setting up the demand for new shoes. Once shoes become "acceptable" to Crash he has very few problems keeping them on (I can save these issues for another post at another time).

So, how have we gone about helping Crash to accept his new shoes...

1. Way in advance (especially when there is a good sale) we take Crash shopping for new shoes. We expect him to get his foot measured, but tell him straight up he can choose if he wants to try on the shoes at the store.

We ask his input on color and markings and usually let him choose between 2 different pairs. Most of the time he refuses to make a choice and may end up kicking or pushing the shoes away (which is also unacceptable and lands him quickly into time out). We are trying to give him some control over the situation and offering opportunities for him to push beyond his comfort zone.

2. We leave the shoes in a visible spot and make no reference to their impending doom. Crash knows they belong to him and he most certainly knows what shoes are for. I do not make a big deal out of this.

3. We start talking about how old his shoes are getting. We try a couple times to glue or repair broke areas (of course we don't "repair" them to the best of our abilities insuring another much needed repair will have to occur shortly. When Crash can understand logically a need for something to occur (even if that something is viewed by him as uncomfortable) he is more likely to accept the change or discomfort (of course he still puts up a good fight).

4. His old shoes disappear. We tell Crash that his shoes got too old and worn out and they are gone. End of discussion.

5. His new shoes are placed by the door and a "fun" outing is planned (trip to the library, park, grocery store...preschoolers think just about anything is "fun".

6. Crash is given a choice. Put on the new shoes, or stay home.
Crash wants desperately to go. He can even tell you why he has to have new shoes. After many tears and numerous rounds of the "mom puts one shoe on, Crash kicks ones shoe off" game, the shoes are on, and the tears are flowing. By the time he is buckled, the shoes are off.

But, he wore them to the car. I celebrate the minor victory and prepare for the next battle. Each battle is shorter and my victories are longer. By the next day he says "Mommy, my shoes aren't scary any more." Battle Over!
...or so I thought We still have minor issues for the next week or two. More verbal protests than anything else. Now all we have left to do is find a good sale on the next size up to start this all over again.

Rule # 4



Rule # 4: New shoes are inevitable

I have yet to hear of a pair of shoes lasting a lifetime. Although this is not saying that I would not be interested in an expand as you grow indestructible shoe. I just have not found it yet.
Unfortunately a preschooler is constantly growing which means every few months it's time for a trip to the local shoe store. Sounds pretty painless and even fun to pick out a brand new pair of shoes. The Police Officer will compare designs and try on all kinds of shoes to find the "fastest" ones. Wouldn't it be awful to have slow sneakers? Crash will happily accompany everyone on this trip. As long that is as the shoes are NOT for him. If I were to ask Crash to try on new shoes we would have a complete screaming crying meltdown in the middle of the store. I am quite certain even the speediest and most experienced sales clerk would not be fast enough to get new sneakers on flailing feet.
He will however consent to having his feet measured. Good enough for me. I will buy a size bigger than what he measures. A little room to grow and plenty of time to let him get used to the idea of new shoes.

Crash's rules about shoes:
#1 Shoes should be a constant never changing predictable entity.
#2 New shoes are scary.
#3 New shoes are squishy.
#4 New shoes are not the same.

What's going on:
Crash enjoys predictability and control. Shoes that are perceived as comfortable help him remain regulated and in control. Changing this routine is very challenging and forces him to give up some of this control. He doesn't realize that the new shoes may also be comfortable and is so busy fighting the change he is unable to process this new information. Add to this some of his tactile defensiveness and new shoes become quite a trying experience. Everyone knows you have to break in new shoes before the become comfortable. This break-in period for Crash can be all most unbearable because to him his shoes really do seem too squishy and scary. Add to this he is a preschooler and his thought process isn't quite mature enough to understand.

Monday, March 16, 2009

Book Review-Sensory Tools for Tots

This is a fantastic resource for parents, preschool teachers, early childhood educators, therapists, or anyone interested in learning more about sensory processing. This book was written by Diana A. Henry, MS, OTR/L, Maureen Kane-Wineland, PhD, OT/L and Susan Swindeman, OTR/L, BCP and it offers everyday solutions to help young children and their families learn to deal appropriately with every day challenges of living with a sensory processing disorder. This book touches on routine activities of every day life such as eatting, bathing, brushing teething, going to bed and provides strategies to help children engage in and complete these activities. This is a short book with an easy to follow format offering checklists and lists that make it easy to share with everyone invoved in the child's life.

Click here for Sample pages

Henry Occupational Services

Monday, March 9, 2009

What is a visual schedule?

A visual schedule can be used for any activity or sequence of events to tell the individual what activities will occur and in what sequence.

Because the schedule is in picture format most everyone will be able to understand the events on the schedule. We use this with Crash to lessen the anxiety he feels during the dressing routine to decrease his screaming tantrums that typically occur when getting dressed. This provides predictability and clearly lays out the expectations. At the end we placed a treasure chest to indicate a "surprise" that would happen if he completed his schedule. This surprise might be to watch a little of a favorite movie, or a bite of a apple , or a piece of cheese. We never defined the surprise so we could make it fit into any situation.

We also have a morning routine schedule and a schedule for getting ready to go outside.

Additional information about visual schedules

How to make a visual schedule:

We chose to incorporate some of Crash's favorite characters to increase his motivation to complete the visual schedule, but this is optional. We also made his schedule portable so it can go to grandma's house or the YMCA or where ever we may need it to go. Finally, we placed a strip of velcro on the back of the schedule for Crash to put the pictures after he completed each step.

1. Define your schedule: Is it for a specific procedure (getting dressed) or a routine of events that will happen in sequential order .

2. List the specific steps

3. Using Google images search for a specific image to represent each step. Images should be concrete and self explanatory.

4. Cut each picture into a small square.

5. Use clear contact paper (found most retail stores with the shelf liners) or a laminator to seal the pictures to prevent them from getting ripped or torn.

6. Use sticky back velcro and place one side of the velcro on the picture and th other on the schedule board.

Saturday, March 7, 2009

Enforcing Rule #3

Please read the earlier post for details on Rule #3

Causing harm or placing others in harms way is not acceptable even if it is the result of faulty neurology. We had to find a way for Crash to get this type of input in a safe and controlled manner. We also have to teach him to recognize symptoms that mean his body requires this type of input and how to APPROPRIATELY seek it out.

But Crash is 3. This would be like taming the "Tasmanian Devil"?

It is POSSIBLE. Here is what we did...

1. We give Crash opportunities for appropriate jumping and crashing throughout his day. We have a huge bean bag chair in our living room that is very comfortable to sit in, but purchased for the specific purpose of running into and crashing.

2. We have a jumping pit in the basement. Crash can go down there at any time and jump until his heart is content.

3. We have been increasing Crash's awareness of his body and teaching him to request "deep pressure". This actually happened naturally and we later turned it into a technique for Crash. When we saw him out of control as a toddler we would go over to him and give him a huge long hug. His body would relax during the hug and he would be more in control afterward. Crash now comes to us throughout the day and asks for hugs. It is important to note that these hugs last 30-60 second and I hug his entire body with one arm squeezing his legs and another arm providing pressure around his shoulders and back. Little hugs do not work.

4. We have tried several ideas from an Occupational therapist as well including
--weighted vest
This is a simple vest with 1-2 lbs of weights sewn into it. It provides a calming effect for the short period of time that it is worn. Crash enjoyed this vest last year. These can be very expensive to purchase. If you know anyone that can sew, they are pretty simple to make.
--neoprene vest
This is made out of wetsuit material and provides a constant squeeze. It works wonders with Crash, but can be very challenging to get on because of some of his tactile concerns.
--weighted blanket
This is similar to the weighted vest. Crash will sleep with it or keep it on his legs while watching a movie.

Rule #3

Rule #3: Bowl with your buddies

Sounds like a very common practice in the bowling alley, but what about in your house with Crash playing the role of the human bowling ball?
This isn't necessarily a huge problem in our house since the Police Officer is bigger than Crash and it is quite hard to get a "strike" (however, it is possible). While visiting relatives, this is another story (especially when visiting the littlest ones).

Crash quite frequently bowls "strikes" when visiting his little cousin. He truly loves this little guy and enjoys playing with him, but has been told countless times that little cousins can "break" and we have to be very careful with our body (hands, arms, legs, etc...) so little cousins don't fall over.

From an outsider prospective, Crash appears to blatantly disregard this rule. He is frequently be talked to or timed out for violations. And to make matters worse he is laughing while he is committing the offense. Does he really not care that he is hurting others?

Without a doubt, he does not want to hurt anyone. He is NOT laughing because he is causing pain or in glee for disregarding rules.

So what's going on...

Everyone is familiar with the 5 senses (see, hear, smell, taste, touch), but there are a few more. One is the PROPRIOCEPTIVE sense which involves "sensory input and feedback that tells us about movement and body position. It's "receptors" are located within our muscles, joints, ligaments, tendons, and connective tissues. It is one of the "deep senses" and could be considered the "position sense" (www.sensory-processing-disorder.com)

Therefore the sensory receptors inside Crash's muscles, joints, and tendons receive "faulty" messages about how he is moving and where his body is in space. Crash is in constant movement to help his body know where it is. Crashing into people or other objects helps provide this awareness and it helps him feel secure in his environment.

Check out this interesting article about sensory processing:

Sensory Processing: Through the Eyes of Dysfunction

Sunday, March 1, 2009

Enforcing Rule #2

Please read the earlier post for details on Rule 2
We live in the mid-west and hibernation is NOT an option. So what did we do?

First, we took a closer look at the situation to see if we could define "scary" and "squishy." When working with a three-year-old, this can be a challenging task. But we found out that typical "ski jackets" are very noisy. As you put your arm into the sleeve there is a swishing sound. Every time you move there is a swishing sound. When you sit down the coat rubs the "swishy" fabric on your neck. Could these things be the culprit? After much trial and error we found a cloth jacket with no neck. This coat was much more acceptable to Crash, but it certainly did not solve all the problems. In order to get the coat on we went back to the visual schedule we used for dressing and made more picture symbols for outside clothing items and added another surprise at the end.

Next, we found some very light weight cloth mittens (without tags). We also found a hat that tightly squeezed his head. Crash is a fan of deep pressure and finds it calming. My thought was maybe the hat could provide a little of this deep pressure to help him organize his body to tolerate these winter experiences. Well, it was a good thought, but winter experiences are still challenging.

So how does Crash make it through each day? Sensory Mommy picks and chooses her battles. Does he really need to wear his boots if there isn't a foot of snow on the ground? Will his fingers fall off by the time he gets from the house to the car? Is it really cold enough for snow pants? When the answer to any of these questions is yes, we use our visual schedule and a very motivating surprise, and the phrase, "You can take them off as soon as _____." We let Crash decide what items to put on in what order and then follow our schedule. We encourage him to talk about his dislike for items of clothing and we acknowledge how he feels while reinforcing the importance of wearing the specific items. Does it work all the time? No. Is it ever his choice? Not really. But it allows him to feel as though he has a tiny bit of control over something that is so obviously painful for him.

Rule # 2

Rule # 2: Only bears can hibernate during the winter.

As nice and idealistic as it sounds to only go outside when the weather is above freezing, it just isn't practical living in the mid-west. Winter happens and there is nothing anybody can do about it except hope for an early spring. Very few people look forward to bundling up, but life goes on or they move south.

Our family enjoys sledding outings, building snowmen, and usually spend hours shoveling each winter. The Police Officer thinks it is his sole responsibility to move all the snow that has been shoveled off the side walk back onto the sidewalk. He asks to go outside all the time and hurries to get all the layers of clothing on to be the first one to make footprints in the fresh snowfall.

Crash has never asked to go outside in the winter. In fact he has only played in the snow twice this year and that was under protest. He would be happy if rule # 2 was: Humans hibernate during the winter. Because this is not the case, here are Crash's rules about winter clothing:
Rule #1: Coats are scary
Rule #2: Coats are squishy
Rule #3: Snowpants are too squishy and too noisy
Rule #4: Mittens are too noisy (the waterproof material makes a swishing sound when you rub your hands together)
Rule #5: Boots are to squishy
Rule #6: Snow is too wet

I suppose I could go on, but I bet you get the idea. When asked if he wants to go outside to play he simply says no. When asked why he says it is too scary. He will watch from the window or happily read a book relieved that he isn't being made to endure the torture of these winter items.

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
Brushing
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.

Breakthrough!
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.