A little more about me...

I am writing this post because I want to offer you a little more background on my life and my disability journey. I would like to learn about you too, so please comment if you relate to my story, have any thoughts or questions, or just want to say hello!

This is me, at 3 years old... 

Yes, I am aware of the tiny mouse pointer in the picture. 

What can I say? My tech skills are enviable ;)  

It's all about the attitude! Feeling frustrated? Itchy tag on my shirt? I have no idea... but that look meant something! I joke, but seriously, I was a very happy toddler. It wasn't until maybe 5 years old that the dreaded "sock and underwear wars" (as my mom called them) began. I have little memory of that time, but my mom would tell you that putting socks and underwear on me was an epic battle! So I guess that was the start of my sensory issues.

As I grew older, I only became more sensitive to sensory input. My best friend, Nicole, knew I didn't like certain sensations, but it never bothered her much; she accommodated me when I asked her to chew more quietly or to not breathe (haha! What a request). She loved me and was always able to sort of laugh off, and also ease, my sensory challenges. I am grateful to have such a wonderful friend!! 

Here we are in our youth. Like most children, we took ourselves very seriously (note sarcasm)...   

That's me strapped into Nicole's suitcase! 

We knew how to have a good time!

But it wasn't all fun and games. I spent many hours, particularly in my pre-teen and teen years (when stress and hormones are already giving you enough trouble) curled up in a ball in the corner of my room, sobbing, covering my ears, trying to tune out all of the sensations that were bothering me. I remember sitting there wishing and praying for it all to stop. I would pull my hair, scratch at my arms, and cry and cry. These were very hard days, to say the least. To top it all off, I had other difficulties as well, such as dyslexia and other learning challenges that seriously affected my ability to do well in school. Between the ages of 10 and 18, I saw many therapists, worked with several tutors, unwillingly attended IEP meetings with my Mom, and had a disability counselor attend classes with me. I will write a post on my experience of having a counselor attend classes with me... not great. 

I had no clue that my inability to cope with certain sensations was due to a condition called Sensory Processing Disorder. Maybe it was the time (late 1980s to late 1990s), but none of the therapists I worked with ever mentioned sensory integration or SPD. That's not to say that they did not think my senses were involved (some even said that I had problems with vision, problems with coordinating the left and right sides of my brain and body, etc.) but they just never quite zeroed in on what the problem actually was. Nowadays, I see that more people are aware of sensory issues, autism, and other similar conditions; it's a relief to see that so many kids today are getting properly assessed and that they are receiving the help they need. The autism and SPD communities are amazing and I am honored to be a part of them! 

Fast forward to university. At Sonoma State University (Shout out to my SSU peeps!), I finally learned about SPD through a two semester course on autism. I majored in psychology and in the psych department, they had this AMAZING program called the Collaborative Autism Training and Support (CATS) program, developed and instructed by Dr. Lorna Catford. If you are in Sonoma County, California, this program is a wonderful resource for both families and students!! Click here to read a great blog post about the CATS program, written by Sonoma County Autism Resources. Of course, it wasn't long before I realized I had a lot in common with the kids I was working with! I started to seriously wonder if I had SPD too? I already identified as a person with disabilities due to my learning disability diagnosis and major issues with school, but I wondered, "could it be that some, if not many of my challenges, are actually related to SPD?" 

Fast forward to the next few of years:

• I learned about occupational therapy and about the profession's enormously important role with SPD
• I took a physiological psychology class from a great professor, Dr. Michael Debellis, who led me to the book "Sensory Integration and the Child" by A. Jean Ayers (occupational therapist) and I completely identified with it!
• I decided that occupational therapy was the career for me! 
• I began shadowing an incredible pediatric occupational therapist (OT) who helped me learn that I have SPD
• I got into grad school, started learning how to be an OT, and began advocating for those with SPD
• In grad school, I was introduced to the sensory profile, an assessment for sensory processing issues - I completed it and it uncovered many of my sensory issues  
• I graduated, passed the OT licensing exam, and I am now an OT!! Woohoo!!

This is me now!

I have to say that my hubby is amazing with my sensory challenges. He understands that I HAVE to sleep with headphones on with white-noise playing, that sometimes I can't eat in the same room as him due to his eating sounds, that yes, I may have to change my clothes 10 times before I leave the house because they feel painfully scratchy or just plain wrong, etc!! He is amazing and I am grateful to have him in my life!

My work involves getting people engaged in life in satisfying and meaningful ways by helping them manage their physical, cognitive and emotional challenges. Advocacy is a very important part of being an OT and I hope that I can continue to be a strong and effective advocate for the SPD community. OT is one amazing career! 

I hope to connect with a team of fellow health professionals who can provide me with a full assessment and help me learn more about my SPD life. Unfortunately, it is difficult to find teams that assess adults, as most teams are more familiar with assessing children. In fact, as I understand it, the only "real" diagnostic tool for SPD is designed for children. Regardless, I still think a team assessment would be helpful and I hope that once I find a group of people to work with, I can share the story here on Navigating the Chaos to provide information and guidance to other adults seeking assessment/diagnosis!

Please stay tuned for more stories; ideas; resources; Sticky, Itchy and Downright Icky Sensations; and much more!! 

Thank you for dropping by and for taking the time to read my SPD story; I know we are all very busy so I appreciate you fitting in time for a visit to my little corner of the internet. I invite you stay and share your own stories, ideas, questions, and thoughts as well! 

Best regards,
Paula

Sleepy Snail

Disclaimer: What I'm about to discuss may or may not be related to SPD alone; I believe that people with a variety of disabilities or different learning styles may relate to this story. I am very passionate about this topic and would love to hear your opinion too! Please comment to let me know if you relate to this story or if it reminds you of a little sleepy snail kiddo you have at home! I am speaking metaphorically, of course ;).   

I..... am.... a.... sleepy..... snail.....

Because of my disabilities and learning style, I think and learn slowly. It is just who I am. Snails are slow... I am slow, and thus, I am like a snail (a cute one, of course). 

BUT.... that being said, I am also an eager beaver! I love to work with others and to challenge myself to be the best I can be! I desperately want to keep up with the crowd! What I notice, however, is that the faster I try to think or learn, the sleepier I get, and the slower I actually go. It's quite frustrating! I become a SLEEPY SNAIL. 

 My mind sometimes says "Paula, I want you to complete that paper as fast as you can!" and I eagerly respond "OKAY!".... and I'm off! I've got this big, silly grin on my face, I picture myself like Rocky, racing up those stairs, but I am suddenly overcome with exhaustion. I begin to realize that my mind is moving slower... and slower.............. and slower. I look at the people around me.... they are flying past and they do not appear to be tired at all. I'm disheartened, but I still try because the eager beaver in me wants to succeed! I push and push until basically, I collapse. That is when I sleep for nearly two days straight. And I get crabby. So now I guess I am a sleepy, snaily, eager, beaver, crab....... man, I look good.

My point is, I've realized that pushing myself too hard and trying to be as fast as others is not helpful; in fact, it only slows me down. 

I want to clarify what I mean by "pushing myself too hard". "Pushing myself too hard" means trying to write a paper by the same deadline that students without disabilities are held to. I am referring to tasks that other people find easily manageable or just a little bit difficult, but that for me (with my learning style and disabilities) are incredibly challenging. In school, I was constantly in denial that I needed extra time to complete assignments. I would work incredibly hard to meet that deadline, but as it approached, I would always succumb to the fact that I just wasn't going to make it.  It hurt me to hear my classmates say things like "Man, we've got two whole weeks to write this paper; this is going to be easy!" As much as I tried not to internalize those statements, I must admit that I absorbed them and felt a little sting every time. I knew it would be hard for me. Pushing myself too hard to meet the same deadlines as other students ALWAYS ended with me in tears, my paper looking like a total mess, and with the sleepy snail in full force. I would crash........ sleep for two days. 

Perhaps you or your child experience this same thing? Many children (including those with developmental/learning disabilities) are influenced by their peers and want to achieve at least as much as their classmates. Just to add insult to injury, our society prizes those children who work fast and get a lot done! I remember reading the teen section in our newspaper growing up and how it only highlighted students who got straight As, while being the star of the basketball team, while volunteering on the weekends, while solving world hunger, etc., etc....... (I exaggerate). Never ONCE did the newspaper highlight a teen who moved a little slower, who was simply proud to have gotten himself to school that day, or who felt excited to have written some of his notes as fast as the teacher spoke that day. I want to argue that those kids are just as incredible as other children and that they have a lot to offer!

Personal benefits of going at our own pace:

• Seeing things others might not because we took the time to ponder and to look deeper
• Doing quality work! When I go slow and steady, I produce great work; work that I am proud of!
• Actually learning! When I go too fast, I do not learn; I think only of the next topic I need to get to. When I slow down and really think about what I'm doing, I learn!
• Going slow and steady may allow us to draw more connections to things we've learned in the past 
• Taking time to learn and to review information commits new learning to long term memory more efficiently than short, quick spurts of learning
• When we go at our own pace, it means that we are being true to who we are; we are treating ourselves with respect and kindness and that is something to be proud of!

Societal benefits of going at our own pace:

• Thinking through things a little longer may allow us to come up with novel solutions and/or ideas
• Because we require time to absorb information, we are often good listeners! Being an active listener will make us an asset to any team!
• People with disabilities are generally hard workers. Going at our own pace does not equal laziness; it means that we will have put in a lot of time and energy to produce GREAT work! 
• Those of us who move a little slower due to a disability often know our strengths and limitations really well. This can save a lot of time for management as we often evaluate ourselves and develop our own strategies to improve on areas of weakness
• Because we have faced challenges around our need for extra time, we can sympathize and/or empathize with other people's challenges and can offer support

What I have learned is that my goal should NEVER be to go faster! I work best when I go at my own pace. I WORK BEST WHEN I AM JUST A SNAIL... not a sleepy snail. Now, how to get society to truly recognize the greatness of us snails? That's a discussion for another day.

Are you, or is someone you know a snail? Do you become a sleepy snail in the face of societies need for speed? Or, like me, do you sometimes become...... a sleepy, snaily, eager, beaver, crab?!?!

Please share :) 

List of Leaders in SPD

Hello there! My intention with this post is to introduce you to a few big names in SPD research and education (if you are not already familiar with them). This is certainly not a comprehensive list; there are many more amazing people out there doing SPD research, educating others, and helping people with their daily sensory challenges. I just wanted to throw a few big names out there to get you started, if you are new to SPD. Feel free to add more names of SPD researches, educators, etc. in the comments! It would be great to have a list of names people can refer to when searching for information on SPD! 

A. Jean Ayers, Ph.D, OTR, FAOTA (1920-1989)

• The first to identify sensory integration dysfunction (now referred to as sensory processing disorder)
• She published books on sensory integration dysfunction, created assessments to identify sensory processing issues, and created the first treatment approach to sensory integration dysfunction
• Her book called Sensory Integration and the Child provides a comprehensive look at her theories on sensory integration and her interventions for sensory integration dysfunction
• Learn more about Dr. A. Jean Ayers by clicking this link

Winnie Dunn, Ph.D, OTR, FAOTA

• Professor and chair of the Department of Occupational Therapy Education at the University of Kansas Medical Center
• Her research focuses on how people respond to sensory experiences in their everyday lives
• She is the author of the "Sensory Profile", a widely used assessment tool that helps individuals (children, adolescents, and adults) determine how they process sensory information
• Dr. Dunn's book called Living Sensationally helps people understand their sensory challenges and helps them learn their sensory type (Seeker, Avoider, Bystander, or Sensor)
• Learn more about Dr. Winnie Dunn here
• Check out her Facebook page!

Lucy Jane Miller, Ph.D, OTR

• Founder of the SPD Foundation, a world leader in research, education, and advocacy for sensory processing disorder
• She has worked to gain widespread recognition of SPD and to have SPD included in diagnostic texts like the Diagnostic Manual for Infancy and Early Childhood
• Dr. Miller has created seven different nationally recognized tests that are used to assess and diagnose SPD and other developmental disabilities
• She is the author of Sensational Kids: Hope and Help for Children with Sensory Processing Disorder, which educates readers on the signs of SPD, the diagnosis and treatment of SPD, and strategies to help people with SPD thrive
• Learn more about Dr. Lucy Jane Miller here
• Check out her treatment and research center!

What is Sensory Processing Disorder (SPD)?

Well, this post proved difficult to write. Why? Because I've only been able to find a few good definitions of SPD. I guess this speaks to the fact that SPD is still a relatively unknown condition, that there's more to be discovered about SPD, and that it is a tricky condition to define! 

The Sensory Processing Disorder (SPD) Foundation provides this helpful description:

"Sensory processing... is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or "sensory integration."

SPD "...is a condition that exists when sensory signals do not get organized into appropriate responses. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other issues may arise if the disorder is not treated effectively."

SPD Foundation for more information

Here's how SPD feels to me:

It feels like the "wires" in my brain are crossed when it comes to certain things, like sights and sounds. For example, when I hear someone breathing, my brain thinks something is hurting me. Now... I know that can't be right, but my brain thinks it anyway! 

It's not just sounds; my brain has "the wrong idea" about sights, tastes, the way things feel, and all sorts of other things! For example, someone else might think a certain type of fabric feels nice and soft, but to me it feels scratchy and painful, so painful that it would bring me to tears when I was a child. 

It can be exhausting, frustrating, disheartening, and confusing. In my childhood years, when my brain was having an extra hard time trying to understand thing, I threw enormous temper tantrums as a way of coping; I always felt ashamed after a temper tantrum. Sometimes I could get through a day okay, but other times, it felt like it was all just too much for my brain and body to deal with. 

What does it feel like to you, to your child, or to someone else that you care about? I'd love to hear your thoughts! 

Everyone is bugged by something! So what's the difference?

When someone who is baffled by SPD inquires about it,  it sometimes goes a little something like this : "So what if you don't like the seams on your pants! I don't like the sound of nails on a chalkboard. Just because you don't like something does not mean you have a condition!" 

Other times, people ask a genuine question:  "A lot of people are bothered by sensory things, at what point is it a condition?"

It's true; nearly everyone is bugged by something. Lots of people do not like sounds, feelings, tastes, etc. Take the chalkboard example; how many people hate the sound of nails on a chalk board? The difference comes down to whether or not it affects their ability to function in daily life. Someone with SPD struggles SOOO much with sensations that they sometimes cannot get through the day! They may not do well in school; they may have a hard time being near people; they may have difficulty performing their work duties. This is all because their mind and body are fighting so hard to cope with sensations. People without SPD are usually still able to function, and possibly even ignore the sensations that bother them. 

I often say that, for me, the world is like an assault on my senses. This may be true for other people with SPD. It's difficult to ignore things in the world that feel like an assault on your body and brain. A young person you know with SPD may cry a lot, hold their ears, hit others, pull off their clothes, throw their body against the wall, scream, scratch till it hurts, grab at things constantly, etc. These are all examples of how a little body might try to expel the terrible feelings associated with SPD. 

Here's an example from my childhood:
I was about 5 years old and I was at a restaurant. I had to use the restroom so my mom took me. After doing my business, it was time to wipe. I remember wiping... and wiping.... and wiping... but I still just did not feel dry! I kept wiping and wiping. My mom, of course, asked me what was going on and I explained my dilemma of not being dry enough. She was supportive. She came in and tried to help me decide when I was dry. Pretty soon, however, my mom realized that other people had entered the restroom and that they were waiting for our stall. I could hear the tone in her voice change as she urged me to stop wiping. I could not stop. I NEEDED to feel dry. I felt desperate to be dry! I broke into sobs and my mom became more flustered. The wiping was starting to hurt.. I cried harder. But I still could not stop. It was as if the lingering feeling of wetness was crawling into my skin and seeping into my brain. It was like a burning, nagging pain; it was swallowing me whole. I wiped and wiped and wiped.... it hurt so much...I sobbed and sobbed... but I kept going. My mom was choking back tears. I could always tell that she wanted so badly to help me get rid of the sensations, but that she was also aware of our surroundings, the time, other people (the other important things in life that parents keep track of) so she knew she had to pull me away somehow... whether or not the sensation had been dealt with. She also knew that the longer she let me sit in a sensory storm, the worse it would get. As much as I screamed, kicked, and cried while she pulled me off the toilet, I needed it because I was never going to be dry enough. I never wanted these things to happen. I always felt guilty after a sensory storm. They often occurred while I was doing something fun or interesting that I did not want to stop doing, but once a bad sensation got a hold of me, it would not let me go. 

This example illustrates the difference; people with SPD struggle with sensations to such a great extent that it affects their ability to function. It may affect their relationships, their jobs, their schooling etc. It is not something that can just be "ignored" or "dealt" with. People with SPD need support, patience, a caring team, and lots of love. Love definitely helps :). 

Thoughts? Questions? Does this story sound familiar? 

Sticky, Itchy, and Downright Icky Sensations: Jeans

Time to write about my first Sticky, Itchy, and Downright Icky Sensation!!! YAY!

Jeans/Seams on Pants

As far as I can remember, it all started with jeans. Almost everything about jeans drove me crazy when I was a kiddo (beginning around age 5 maybe?). The seams were particularly uncomfortable (they felt like tiny razor blades cutting into the sides of my legs), but then there was also the waistband, the fabric, the feeling of one pant leg being tighter than the other, the crotch being too high or too low, and the edge of the seam at the end of the leg; all of these things were ugghh... terrible!! Absolutely unbearable! Impossibly displeasurable!... Nope, that last one doesn't work... thought I was on the verge of a broadway song there... sigh. Anyway, jeans were awful! So what is a parent to do with a child who won't wear jeans? Oh man, so many parents are going to relate to this one... You put your kid in sweatpants... all the time!!! Actually, for me, it was often a one piece bathing suit with sweatpants over it. I'd wear this outfit day after day, happy as a clam!! I didn't care what people thought! I could FUNCTION!! This was priceless and totally worth the fashion faux pas. Sound familiar parents? Have you put your kid in the same sweatpants day after day to avoid a sensory storm? It's okay. My parents understand :)  

I joke, but honestly, what worked best for my family was compromise. The truth was my parents were not going to magically fix my sensory issues with jeans. All we could do was compromise on outfits that I felt comfortable in and that my parents felt were still appropriate enough for school. I understand that nowadays, there are seamless jeans and things like that for kids with sensitive skin or SPD. I wish those had been around when I was a kiddo; they might have worked for me....... I might try them now!!! I did look up pajama jeans a few months ago and considered trying them for day use. Hey, whatever works! But anyway, I believe that compromise may be the best way to combat this issue and that if you can get your hands on some seamless pants, they may turn out to be a good solution! Have you tried them already? Thoughts?