Coping

Shopping for Socks With Sensory Processing Disorder

STAR Admin — Thu, 11 Oct 2018 17:38:35 +0000

Shopping for Socks With Sensory Processing Disorder STAR Admin Thu, 10/11/2018 - 17:38

I have to tell you about my shopping trip but first I'll need to explain a few things. My 13-year-old son, Jackson, has Sensory Processing Disorder. His tactile sense tends to work against him more than in his favor most days especially when it relates to clothing. One of the hardest things to find for him is socks. Socks with pesky seams, elastic at the top, too high, too short, too rough, you name it. They just stink before they ever get on his feet. Those of you with tactile sensitive kids will understand my outburst of joy at Target regarding socks.

Several months ago while going over my packing list for our trip to Colorado, Jackson mentioned that he needed more socks. No worries. We had been buying the "perfect" socks at another store for the past several years. They always had them. Those socks were a staple item there. We hopped in the car and went to grab some and that's when the panic did set in. They were gone without a trace. No empty peg, no shelf tag with an empty space above it. They had vanished from the face of the earth. I quickly pulled up the company website and found they had been discontinued. I wasn't sure if I was about to break into an ugly cry or a fit of hideous laughter as once again the real world played a sensory joke on me the day before we left on vacation.

I assured him that we would find something else and we dashed off to Target. He checked out every pair of socks in the store and found some that were a similar style and even came in colors that he liked! Score! We grabbed a few pairs of the socks, went through the check out and the next day headed out for Denver and our mountains with happy feet.

Fast forward a month. Jackson had decided to go back to Target with me to grab a few things, again a rare occurrence since he's not fond of shopping. We passed by the men's department on the way to another part of the store and I mentioned that we should stop and get him a few more pairs of socks. I went straight to where they'd been on the end cap of the display. No socks. I ran around the side of the rack. No socks. No socks at the end of the isle either or on the other side. Panic started to creep back in. They can't do this to me (I mean him)! I happened to look on the back wall that said "Clearance". There were two pegs with about 8 pairs of his socks on each peg. One peg held crew socks for winter and the other had shorter ones for summer. He was just as excited as I was and reached up and removed a package of each. This is when I think he thought I'd lost it. I removed one entire peg from the wall and dumped it into our cart. Then I did it again with the entire peg of crew socks. His eyes got wide and he said, "What are you doing?" With a maniacal laugh I said that we were NOT going to have to worry about sock hunting anytime soon. This mom has been around the SPD tree too often. I know how to play this game!

As we finished our shopping I was on cloud nine to think that we'd found socks in what appeared to be the nick of time. At the register we piled the conveyor belt with socks. The cashier gave us an odd look and said, "These must be really good socks!" I just smiled and told her that she had no idea just how good they were. I'm certain she had never had a customer be so excited about socks before and might never see it again. All I know is my Jackson walks with happy feet because his socks feel so good. That's all that matters.

If you are looking for SPD treatment for yourself or your child fill out a child or adult intake form now to be treated at STAR Institute Treatment Center or search our Treatment Directory to find services in your area.

Please Support

Project 2.4 Billion

Help us make information about sensory processing challenges

available in 6 additional languages and accessible to 2.4 billion people.

Meggin has recently achieved a long term goal of founding a non-profit organization, Sensational Hope (www.sensationalhope.org), which provides community awareness about SPD in the Kansas City Metro Area. It connects families as well as assists children with SPD in the purchase of needed therapy equipment. Meggin resides in the Kansas City area with her husband of 15 years, Erich, her two sons, Bryce and Jackson, her two furry children (dogs) Chance and Sadie, two Rabbits (Max and Bailey), and last but not least, 10 fish. Meggin is honored to blog for the STAR Institute and is looking forward to connecting with other SPD families.

by Meggin

Making Sense of Your Sensory Onion

STAR Admin — Fri, 05 Oct 2018 17:22:17 +0000

Making Sense of Your Sensory Onion STAR Admin Fri, 10/05/2018 - 17:22

Here’s a moderately interesting piece of information: of all the adults I know of who’ve been diagnosed with Sensory Processing Disorder, I am the only one who was diagnosed as a child - in 1996, to be exact. In fact, it used to be called Sensory Integration Disorder. That’s right, there was no “P.”

This has left me in a unique position. I've had nearly 20 years to experience my life with SPD fully knowing that I had SPD. (In case you didn't know, this is not common for adults with SPD.)

Unfortunately for lots of people, they live many - difficult - years not knowing what on Earth is going on with them. They have confusing and embarrassing issues that nobody can explain. Often, other diagnoses are used to account for the wide range of problems, but those diagnoses don't fit right. It's like forcing a puzzle piece into the wrong space when you're desperate to finish the dang thing. You know that particular piece doesn't work in that spot, but it's the closest one, and you're getting tired of figuring out this puzzle. You’re left with a wonky-looking puzzle, and an overwhelming sense of exasperation.

That's what it's like to be a sensory person without knowing that you are one.

Instructions Unclear, Please Try Again

As SPD'ers, we tend to spend an outrageous amount of time attempting to make sense of ourselves and our place in a world that doesn't seem too perceptive regarding our comfort or functionality. We make charts. We make lists. We experiment. We talk and cry and share until we find some solution - any solution - on how to manage living with an atypical neurological makeup.

If only it was that easy! Unfortunately, we aren't gifted with a set of instructions for how to manage our sensory brains. We are left with the often daunting task of making sense of all that ourselves.

The ease of this task seems akin to climbing Mr. Everest on a cow.

The Sensory Onion

Understanding your sensory self comes in layers (yes, as Shrek said, like an onion). Once you discover one layer of yourself, it leads to things hidden underneath that you wouldn't have discovered if you hadn't peeled back that first layer initially.

For instance, you've always assumed that you despised getting your hair cut because you don't do well with small talk, but as it turns out, you're tactile defensive, and having your hair touched in any manner is distressing to you.

There's the first layer of the sensory onion. It makes sense that you can do well with small talk in other places, but at the salon or barber, your hair is being touched during conversation. The hair touching is the real problem, not the small talk. Yet, the small talk becomes more difficult because of the hair-touching distress, hence the confusion.

As it usually happens when dealing with onions, there will probably be a lot of tears when you start to peel back the layers.

The realization that your life-long struggles can be traced back to a singular disorder and it has a name and it's REAL - that's quite a moment. That's the kind of moment where Oprah pops out and starts dishing out Volkswagens like some kind of freaky Santa. It's also a moment where you want to fall to the floor hysterically crying. You are mourning the struggle you or your child has faced. It was long - too long - and you've probably developed additional health problems trying to figure out that you had sensory issues all along.

There were most likely too many times to count where thoughts in your head looked like this:

After realizing that your seemingly random issues can all be attributed to one source, it's liberating. Your perspective of yourself and your life is altered drastically, and when a situation arises, you know it's probably your SPD at the root of the problem. And once you know that, you can get access to the tools and techniques to solve the problem.

But, it's not all sunshine and caramel fudge brownies. Some days, you still won't make sense. But that's part of the sensory journey. Your sensory onion is gigantic, and you're still peeling away those layers. There will be sensory problems that you will continuously have to overcome, and there will be no easy solution. There will be days where nothing makes sense and then, days where everything makes sense, and you'll feel like you and Moo-lan really did make it to the top of Everest.

If there’s one thing I know for sure, it’s that despite my early diagnosis, I’ve still got a long way to go with peeling away the layers of my sensory onion. But with every layer I get through, the more I realize that all this sensory nonsense can and will make a whole lot of sense.

Please Support

Project 2.4 Billion

Help us make information about sensory processing

challenges available in 6 additional languages.

If you are looking for SPD treatment for yourself or your child fill out a child or adult intake form now to be treated at STAR Institute Treatment Center or search our Treatment Directory to find services in your area

Kelly Dillon is an adult with Sensory Processing Disorder, and the writer and illustrator of the blog Eating Off Plastic, where she humorously chronicles her life with SPD. She is a proud SPD advocate for children, teens, and adults. Kelly enjoys creature comforts, pacing in small rooms, and cupcakes. She has her Bachelor’s Degree in Psychology from SUNY New Paltz. Visit her website!

by Kelly Dillon

The Two Days That Renewed Me as an SPD Parent

STAR Admin — Fri, 18 May 2018 18:50:32 +0000

The Two Days That Renewed Me as an SPD Parent STAR Admin Fri, 05/18/2018 - 18:50

Last year I attended a two-day event that renewed my fighting spirit like no other. I felt as if I'd been bathed in waters that brought my spirit to life again. There are days in our individual communities when we have to fight such an uphill battle that we forget about our villages. I spent two days surrounded by "my village". Everyone there spoke my language, cried my same tears and celebrated my same victories. We were all fighting the same fight for Sensory Processing Disorder (SPD).

What was the event that inspired and renewed me?

It was STAR Institute’s International 3S Symposium that I attended last October on behalf of my non-profit, Sensational Hope.

My organization networks and helps families in the Kansas City area with Sensory Processing Disorder. I decided to attend STAR Institute’s symposium because I knew I would have the opportunity to network with other like-minded individuals. On top of that, let's just get real, who could pass up the opportunity to be in the company of Dr. Lucy Miller?

The symposium in Denver offered two tracks. One was more strategy focused for both parents and therapists and the other one was a research track. I opted to take the strategies track first hoping I could snag the research articles at a later time which I was able to do.

I hit the road early on Friday morning towards the conference venue, and I was giddy with excitement. I knew that I was about to see familiar faces and, most of all, I was going to be back in a room of hundreds where everyone was SPD-friendly. They get it!

Upon arriving, I checked out the exhibitors and found a ton of things that I "needed". There were so many companies there that support SPD and make life a little easier for our kids.

At the opening session my hero walked on stage, Dr. Lucy Miller. Her passion for SPD is endless, and she fights for individuals with SPD like nobody else. Yes, I cried when I saw her. She'll never know the number of lives she has touched and changed. But wait! Who's this new Virginia Spielmann? Jury's out I thought. She's not Dr. Miller (keep reading please because you'll find out that she actually is).

I attended multiple sessions over the next two days. Diana Henry always amazes me. Her depth of wisdom and years of experience in this field are priceless. A panel of STAR Institute Occupational Therapists led a discussion that was so beneficial to everyone. One OT shared her own personal journey that was incredibly touching. It was the first time she had shared it in public and it was moving to all of us there. The list goes on and on regarding the amount of information that was shared. The speakers were spot on.

One of my personal highlights occurred while waiting for a session to start. I was digging for a peppermint in the candy dish on the table when a woman sat down next to me. I looked up to say hello and holy cow, it was Carol Kranowitz! Good thing that mint wasn't in my mouth already because I would have inhaled it straight down my windpipe! It just got better when she remembered who I was, and we had some amazing conversations over the next few days. Those of you that have read The Out of Sync Child along with the rest of her library know what an amazing woman she is. Carol is another that has fought for individuals with SPD for years and never gives up on the battle. She's another hero of mine and one who will never know the impact she has had on the SPD world, our families and kids.

At the networking luncheons we had various conversations about adolescents and teens with SPD, service animals and SPD and a slew of other topics we could check out from table to table. It was so wonderful to chat with therapists of all types, fellow parents and others that were just there to learn more. I kept thinking that I wish every disorder that exists had the opportunity for this many brains and champions to sit down together and figure out how to make the world a better place for those affected by their disorders and diseases. The ideas that came out of those table discussions were invaluable.

I was truly honored when I got invited to attend the Speaker's Dinner on Friday night. I could barely eat as I sat in the company of people I'd only read about in books. My most embarrassing moment was speaking with a lovely lady for quite some time while we ate. I then apologized that I hadn't introduced myself and asked her name. She said it was Dr. Margaret Bauman. Again, thankfully I didn't have food in my mouth so I didn't choke. I was sitting next to the woman who established the Autism Research Foundation! This folks, was my equivalent of attending the Academy Awards. These are my stars and that was my Hollywood.

So, back to this Virginia Spielmann. Who was she?

She seemed nice with a really cool British accent, a great sense of humor, and it was obvious that she was an SPD genius. By the end of the conference I had been able to catch her here and there as she sprinted around overseeing this amazing conference. Virginia, my friends, is another Dr. Miller. She is here and she is fighting for us. She moved from Hong Kong to take the job at STAR Institute. She was handpicked by Dr. Lucy Jane Miller and we couldn't be in better hands. This had been a real fear of mine because I knew that Lucy would eventually want to retire. Who could possibly step in to replace her? Well, we’ve found her. Virginia and Dr. Miller together are a force to be reckoned with and we are very blessed.

To see the passion of the STAR Institute therapists and staff, OTs from around the globe, fellow parents, leading researchers and countless other individuals was awe inspiring to say the least.

Tears flowed as I pulled out of the parking garage that day. The same tears that I had cried as we left the intensive treatment program with my son at STAR Institute almost six years ago. Tears filled with thankfulness, joy and a little sadness to know I was going back home to continue the battle somewhat alone. Most of all though, my tears were filled with hope. Hope and reassurance that we are making progress with SPD. More and more people are hearing us and seeing our kids. So keep up the fight; help spread the awareness. Most of all know that you do have a really, really awesome village.

If you are looking for SPD treatment for yourself or your child fill out a child or adult intake form now to be treated at STAR Institute Treatment Center or search our Treatment Directory to find services in your area.

Registration for STAR Institute's 21st International 3S Symposium and Pre-Symposium Parent Workshop in Atlanta is NOW OPEN! Find out more information about these events and register here.

Can't attend in person? Register for the livestream of the Parent Workshop here!

Meggin has recently achieved a long term goal of founding a non-profit organization, Sensational Hope (www.sensationalhope.org), which provides community awareness about SPD in the Kansas City Metro Area. It connects families as well as assists children with SPD in the purchase of needed therapy equipment. Meggin resides in the Kansas City area with her husband of 15 years, Erich, her two sons, Bryce and Jackson, her two furry children (dogs) Chance and Sadie, two Rabbits (Max and Bailey), and last but not least, 10 fish. Meggin is honored to blog for the STAR Institute and is looking forward to connecting with other SPD families.

By Meggin

Do You Know What Your Child is Doing in Their OT Sessions?

STAR Admin — Thu, 10 May 2018 16:37:26 +0000

Do You Know What Your Child is Doing in Their OT Sessions? STAR Admin Thu, 05/10/2018 - 16:37

I'm going to write this with the knowledge that there will be rebuttals from parents and therapists alike. I just wanted to throw that out there. The topic? Parents involvement in their child's Occupational Therapy (OT) sessions or should I say lack of it. As a STAR Institute "trained" parent I'm passionate about this mostly because I know what a difference it made for us and our son Jackson regarding success with his therapy for Sensory Processing Disorder (SPD). I've also been on the other side (not involved in therapy) and have seen the harm it can do.

When Jackson first started therapy at the age of 4 we went to a local clinic. Our OT was amazing and we loved her. There were times at night when he was struggling after a bad day and he would ask for her. I would sit by his bed and cry with him and wonder why he was asking for his therapist and not me or my husband? What was she doing with him in therapy that had such an impact on him? I went back with him to every session. I watched every move that she made with him through a window. I'd go home and read books, scour the internet, anything to try to find information on how it was helping. When I would ask why she was putting him in the swing or having him play in shaving cream I'd get a generalized answer like, "It's helping to develop his sensory system." This wasn't much help at 9 p.m. at night when he was having a meltdown. I felt like we were hamsters on a wheel going nowhere. We were stuck in a rut, not going forward but definitely moving backward financially paying for therapy we didn't understand and seeing no improvement. After a few years of this, we quit. There just had to be something more out there other than me going to graduate school to become an OT to better understand it all.

We decided to go to STAR Institute, and when we arrived we were told that we were expected to attend and be a part of every single one of Jackson's OT sessions. This also included his older brother. During the sessions we were respectful and didn't interrupt his OT, but she was so amazing. She would explain things to Jackson during therapy so that while listening, I would learn, too. "Jackson, I can tell you LOVE the swing! Do you know why you like it so much? You love it because....." I have to admit that Jackson didn't care about the last part of her sentence but I hung onto her every word. It was like a fine diamond every time that she spoke and I had so many "ah ha" moments just by listening. I was finally being taught the how and why of sensory OT. When we returned home, it was life changing for Jackson and our family. There was no more of not knowing what to do or not knowing what calms him the best or what sets him off.

Because of my non-profit I frequently visit area OT clinics. It never fails that I walk in and the lobby is packed with parents. Some are asleep on the couches getting a nap in, some are on their phones, and others trying their best to listen or see what is going on with their child in the other room. I want to tell them to get back there with their child! I want to let them know that they're missing a golden opportunity! The OTs will say that there are privacy issues, not enough space, that the child will get too distracted with the parent back there. I get that. I can also tell you that as a STAR Institute "graduate" it is possible to work around all the negatives. As the parent you have to find ways to be less distracting. Don't ask questions or interrupt the session. As for the OT, explain as you go while the parent listens. Offer privacy forms for parents to sign to protect patient information if it is overheard in a shared area. Does it take a little more time on the therapist's part and take away some of that much needed downtime for the parent in the lobby? Absolutely! Is it essential for the success of the parent and child at home? Absolutely!

Without the parent education piece a platform is created for failure at home. Spending an hour a week at an OT session and not knowing what they are doing, why they are doing it, or by not being able to see in real time the child's reaction to the therapy activity doesn't teach the parent anything.

Parents, ask your OT to be included in the sessions. Be respectful while you're in there. Save your questions until the end or write them down and shoot the therapist an email later on. Observation is the best way to soak in what's going on. Remember the phrase, "Silence is golden" and apply it when observing a session.

Therapists, thank you for allowing us as parents to come into your space. We promise to behave and we thank you from the bottom of our hearts for sharing your knowledge and for loving our children. Please invite parents into your therapy sessions. I promise that it really is life changing for families when you do. We can all learn from each other. The winner in the end are our SPD kids and who can ask for more than that?

If you are looking for SPD treatment for yourself or your child fill out a child or adult intake form now to be treated at STAR Institute Treatment Center or search our Treatment Directory to find services in your area.

By Meggin

My SPD Diagnosis Helped Me Understand My Story

STAR Admin — Tue, 08 May 2018 16:55:40 +0000

My SPD Diagnosis Helped Me Understand My Story STAR Admin Tue, 05/08/2018 - 16:55

In September 2017, we came across an inspiring TED Talk by Jennifer Allison that made us instantaneous fans. Her ability to compose herself in a calm and organized manner while talking about sensory challenges, addiction, and joy struck us with awe. In her TED Talk, Jennifer shares her love for art and she is REALLY talented. About a week later, we had one of her prints hanging above the door of our shared office.

During that time, we reached out to Jennifer to see if she would like to collaborate. She agreed to go live on Facebook to talk with us about her story, her rambunctious childhood, and her sensory “superpowers.” Since we’ve started to share Sensory Processing Disorder (SPD) stories, we’ve realized that one of the many things a correct diagnosis can offer is new understanding and the opportunity for the individual to change their own inner story of themselves. We will let Jennifer elaborate through her own experience…

What inspired you to share your SPD story with others?

I know first-hand how challenging it can be to have SPD and the misunderstanding it can create in relationships. Decades of my life were marked with chaos and confusion because I struggled with everyday things that most other people don’t. However, I finally learned that I’m wired like this for a purpose...and there are PERKS to my perception! I share my story now to help others understand the struggle is real, but people who are wired differently can reach their full potential with the right support, and by being who they are meant to be.

How has learning about SPD changed the way you tell your story?

Most of my life I was told I was a difficult, strong-willed, ornery child. I often felt isolated, like I didn’t belong in this world. I believed that there was something wrong with me. As an adult I continued to struggle with the same issues, no matter how hard I tried. So when I FINALLY received my SPD diagnosis (in my forties) it COMPLETELY changed my life. The diagnosis gave me context to understand why I perceived the world so differently. It validated the unique experiences I had been having for decades. It helped me focus on the benefits of having a brain like mine. But most of all, the diagnosis played a big part in helping me restore many strained relationships in my life. Now my story has a happy ending!

What has happened in response to you sharing your story?

Sharing my story has connected me with thousands of other people who feel misunderstood or have similar struggles. I’m able to encourage them as well as receive support from them. I no longer feel like I’m alone in this world! Many people have thanked me through streams of tears for giving them better insight as to what their children or loved ones are going through too, which really motivates me. Sharing my story has given me hope and purpose, so all my struggles were not in vain.

What would be your advice to others who are thinking or planning on sharing their stories?

I would urge others be authentic. To always be yourself. Don’t aim for “normal” and stop trying so hard to fit into to a mold you were never meant to fit into. Instead, focus on learning how to use your special gifts in positive ways. Surround yourself with others who can support you. Find healthy coping mechanisms. Be honest and transparent about any special accommodations you need. Then embrace your gifts and share them with the world! It’s a win-win for everybody when we all do this.

We’re so grateful for the work that Jennifer continues to do for the SPD community. We look forward to sharing even more stories that we’re fans of in the future. Stay tuned!

If you are looking for SPD treatment for yourself or your child fill out a child or adult intake form now to be treated at STAR Institute Treatment Center or search our Treatment Directory to find services in your area.

Get the series now! Learn about five essential topics for adults and teens with Sensory Processing Disorder (SPD). This series is for individuals with SPD, parents, caregivers, and professionals working with the SPD population.

Presented by adult SPD specialists, Carrie Einck, MS, OTR/L and Sarah Norris, MS, OTR/L who have spearheaded STAR Institue's renowned adult and adolescent treatment program.

Sarah Norris, MS, OTR/L

Sarah is a licensed and registered occupational therapist with experience in inpatient and outpatient pediatric hospital, school-based, early intervention, summer camp, and private practice settings. She graduated with a Master’s degree in occupational therapy from the University of South Alabama and spent several years working in Tennessee and Georgia before coming to Colorado.

Sarah is committed to helping individuals with Sensory Processing Disorder and their families experience life to the fullest. Sarah is trained in DIR/Floortime, Integrated Listening Systems (iLs), Interactive Metronome, Handwriting Without Tears, Therapeutic Listening, Brain Gym, NeuroNet, ALERT program and SOS feeding interventions, among others. She has extensive knowledge and training in Sensory Processing Disorder treatment and evaluation through participation in the Level 1 Mentorship program with the STAR Institute. She loves to read and is always open to learning new ways to help the clients and families she works with. Sarah is married, has two young children, and she loves exploring all the adventures Colorado has to offer in her free time.

Carrie Einck OTR/L

Carrie graduated with her Master’s Degree in Occupational Therapy from the University of Wisconsin- La Crosse. She has extensive knowledge and training in Sensory Processing Disorder treatment and evaluation through participation in the Level 1 Mentorship program with the STAR Center and through participation in the SIPT Certification program. Carrie has also received training in iLs, Therapeutic Listening, SOS feeding approach and Handwriting Without Tears.

Before joining the STAR team, she worked in both the outpatient pediatric clinic setting and school settings in Chicago and volunteered abroad as an OT in order to further her understanding of occupational therapy from a global perspective. In Chicago, she also founded a community-based social skills group for kids of all ages and abilities that promote social skill building and motor development through a fun and motivating class taught on mini trampolines.

Jennifer Allison

At UPS, Jennifer Allison designs applications that allow customers to complete complex tasks that feel simple. Inspired by her personal experiences, she leads her UX team with a rare philosophy: designing solutions for disabled users will ultimately improve the experience for all customers. A user interface designer by day, by night, she is an artist. She is an avid painter, and has published several coloring books featuring her work. Jennifer graduated from the American College for the Applied Arts in Atlanta with a bachelor’s in commercial art. She is known by friends and fans online as “Rambunctious Kid.”

To hear more of my story about growing up with SPD, and how art helps me thrive, watch my TED Talk or visit my blog.

By Sarah Norris, Carrie Einck, Jennifer Allison

There Were Few Adults with SPD

STAR Admin — Tue, 08 May 2018 15:49:27 +0000

There Were Few Adults with SPD STAR Admin Tue, 05/08/2018 - 15:49

As STAR Institute therapists for the Adolescent and Adult Treatment Program, we’ve seen so many of our clients take their sensory processing challenges and use them as sensory “superpowers” and develop amazing abilities. These newly repurposed abilities have helped them succeed in work and parenting, become SPD advocates, and so on. Recently, we decided to share our own personal sensory stories. In that process, we learned just how difficult sharing personal life experiences can be and how helpful it is for the storyteller and the listener. We believe that there is power in community and that storytelling plays an important role in bringing people together.

This month, we’ve asked Rachel Schneider, author of Making Sense, to share her Sensory Processing Disorder (SPD) story with all of us. Like many present day adults with SPD, she was not diagnosed as a child and she found herself exploring an SPD diagnosis as an adult. We were immediate fans of her book upon its release and we were pleased to meet her at STAR Institute’s 3S Symposium in 2016. Rachel agreed to get on stage under the bright lights in front of hundreds of professionals and share her story. She did it gracefully and unfiltered, which made us even bigger fans on the spot. She’s an advocate in every way and always willing to share.

And this is what she shared with us…

What inspired you to share your SPD story with others?

When I started my blog, Coming to My Senses, in 2010, it was a way for me to reflect on my own experiences during evaluation and the early days of OT and help me make sense of the new things I was learning about myself. At the time, I hadn't come across more than one other adult with SPD, and I felt alone in my challenges, as I had my entire life, and assumed no one would ever find my blog or want to hear my story. When people started emailing me, telling me that they found my blog and were going through the same things, I was shocked but also excited. I love connecting with and helping people (my graduate degree is in Mental Health Counseling), and here was a new opportunity for me to help people who I understood so deeply because I was one of them. During the early days of my delayed diagnosis at age 27, I felt especially frustrated that there were so few resources for adults. People used to say to me, "isn't SPD a childhood disorder?" and I would say - "well, I'm an adult with it, so whether or not it impacts children, it impacts me in adulthood too." That frustration, along with my love of people, fueled my passion for being a leading voice of the adult SPD community. I wanted to scream: PAY ATTENTION TO US! WE ARE WORTHY OF YOUR CONSIDERATION! And I continued to do that through my blog, articles, social media posts, and eventually, books.

How has learning about SPD changed the way you tell your story?

It's not so much learning about SPD that changed how I share my story but accepting my diagnosis that changed the way I felt about SPD, and so how I tell my story changed as well. Sure, learning about SPD - especially the research that's been conducted - enables me to sound educated on the topic and it gives me a concrete, scientific basis for my experiences, but the more I share my story, the more I'm able to make sense of my past and present. It's like an ongoing therapeutic exercise. Each time I describe my particular sensory sensitivities, each time I revisit what I once deemed a traumatic moment of my past, each time someone else says, yes, I hear you, I understand you, it takes away the negative power that my then-unnamed condition had. Early on in my sensory education, I wove true tales about my life with a focus on the hurt and the drama. I was the victim in these stories, at the mercy of a nameless condition that altered the course of many moments of my childhood, adolescence, and early adulthood and impacted my self-worth. Through therapy and with the connections I continue to make in the SPD community, I've learned how to share my story from a position of strength. Here I am, I say. Here are what you may deem weaknesses, but I see them as respectable limitations and acceptable reactions to particular neurologically-based needs. I believe that telling stories and sharing our most personal hurts, especially with those who understand, give us the chance to restore our own power in the face of our differences.

What has happened in response to you sharing your story?

(Building on the last answer - some of these are intertwined), sharing my story has allowed me to become the heroine of my life. I once was the scared young woman who was at the mercy of some unnamed "thing" that impacted the way she comprehended the physical world around her and how she was able/unable to engage. Now I'm (mostly) at peace with what it's like to be me, and to love who I am exactly as I am. My theory still remains: this is my life and life is short. I have two choices. I can forfeit my time here, distraught and angry about my unique needs, and be miserable until the end, or I can celebrate, accept, and live peacefully with my differences and perceived limitations and be happy. Sharing my story has also allowed me to reach thousands of others like me. I like to think that my very public insistence that I'm okay and worthy in spite of my neurology (or even because of my neurology!) has helped encourage our field to look closer at adults, and I hope that I've given other adults with SPD the guts to stand up for themselves and share their own stories to make sense of their lives.

What would be your advice to others who are thinking or planning on sharing their stories?

Your story is important, it is valid, and it is beautiful. Do it. Don't deprive the world - or even yourself - of the deepest expression of who you really are. People may not like what you have to say, but that's their problem, not yours. You are worthy and deserve to make sense of the differences and special challenges you've had to face. Right now, someone out there with SPD is waiting to hear your story. They're drowning in an ocean of fear, doubt, and shame. It's a destination I used to haunt and it's one I know you're all too familiar with as well. Your story will be their life raft and your presence will be their rescue vessel. Quickly, go share!

We’re so grateful for the work that Rachel continues to do for the SPD community. We look forward to sharing even more stories that we’re fans of in the future. Stay tuned!

If you are looking for SPD treatment for yourself or your child fill out a child or adult intake form now to be treated at STAR Institute Treatment Center or search our Treatment Directory to find services in your area.

Presented by adult SPD specialists, Carrie Einck, MS, OTR/L and Sarah Norris, MS, OTR/L who have spearheaded STAR Institue's renowned adult and adolescent treatment program.

Sarah Norris, MS, OTR/L

Carrie Einck OTR/L

Rachel S. Schneider, M.A., MHC

With a Bachelor's in Psychology from Brandeis University, a Master's in Mental Health Counseling from the Ferkauf Graduate School of Psychology at Yeshiva University, and through my own experiences as an adult with SPD, I advocate on behalf of those like me who searched for years to find the explanation for their particular sensory challenges. I am passionate about SPD and how it affects adults. In common parlance, SPD is a childhood disorder, but this fails to recognize the innumerable adults who lacked a proper diagnosis in childhood, and now must learn to redefine themselves and their abilities in adulthood.

After my own diagnosis, I hungrily searched for material to support and validate my own experiences, but very little existed for delayed-diagnosis sensory adults. I began writing my blog, Coming to My Senses, to serve as an intimate picture of SPD diagnosis and treatment in adulthood.

By Sarah Norris, Carrie Einck, and Rachel Schneider

Impact of SPD on Childhood and Adolescence

SPD and Sexuality: An Interview

STAR Admin — Fri, 13 Apr 2018 14:11:56 +0000

SPD and Sexuality: An Interview STAR Admin Fri, 04/13/2018 - 14:11

Can Sensory Processing Disorder (SPD) and sexuality impact one another? If so, how does this look, especially in terms of relationship?

In the following interview, we explored one young man’s experience as a self-identified gay man and person with SPD.

Woody is a 24-year-old recent college graduate who became aware of his SPD and his sexuality at young ages. Woody agreed to talk to us about what those discoveries were like and how they have, or have not, impacted one another throughout his life, especially in the development of his meaningful relationships.

Sensory Processing Disorder or SPD is a neurological disorder in which the sensory information that the individual perceives results in abnormal responses.

Sensory processing refers to the way the nervous system receives messages from the senses and turns them into responses. For those with Sensory Processing Disorder, sensory information goes into the brain but does not get organized into appropriate responses. Those with SPD perceive and/or respond to sensory information differently than most other people. Unlike people who have impaired sight or hearing, those with Sensory Processing Disorder do detect the sensory information; however, the sensory information gets “mixed up” in their brain and therefore the responses are inappropriate in the context in which they find themselves.

Jump to different parts of the conversation by clicking the links below...

Self-Identification

SPD Self-Discovery

SPD and Relationships

Sexuality Self-Discovery

SPD and Sense of Self

Self-identification

Mim: How do you define your self-identity in terms of your sensory experiences?

Woody: As far as my SPD goes?

M: Do you say you have SPD?

W: I say I have SPD.

M: Believe it or not, there are other options

W: Really?

M: Some people prefer “sensory differences,” “sensory challenges.” They don’t use the term “disorder.” That doesn’t mean that’s wrong. It’s just however you identify.

W: I like to call it as the scientific consensus calls it because I’m a “sciency” person.

M: How do you self-identify your sexual identity?

W: Gay…. It’s pretty accurate.

SPD Self-Discovery

M: What is your first memory around your sensory experience as being different from those around you? Do you have a memory like this?

W: Honestly a lot comes from stories that my parents have told. I have the great luxury of being someone who went through treatment at a very young age. I started treatment… I remember actually doing the initial testing.

M: How old do you think you were?

W: I must have been... I think it was around second grade.

M: So, like 7 or 8 years old?

W: Yeah. I remember my mom saying to me, “Hey after school, I’m gonna take you out a little bit early and we’re gonna go see this girl Andrea” -- who was my first OT. A different Andrea [from one currently working at STAR Institute], she lives in England now - lovely human being. I don’t know that I always… The thing that I always tell people, with Sensory Processing Disorder is that you can’t… it’s never really visible to you. Right? That’s just who you are.

M: Can you describe how you experienced SPD in your childhood?

W: I have plenty of memories of being really sensitive to loud noises. The one that I always tell, I told it in a video a while ago. We went to see “The Iron Giant.”

M: I remember that movie.

W: And we were a little bit late and when we got into the theater, the giant was crashing into earth and it was really loud and from what my dad says, I was on the floor with my hands over my ears because it was too much. Yeah... and once I got in, it was fine and then… this is a story that I haven’t told as much but I’ve always wanted to. I’m a huge Disney fan and theme park freak.

M: I know about your Disney love.

W: A little bit ironic. I don’t know if you’ve ever heard of “Dinosaur” the ride?

M: Yes.

W: Yeah at Animal Kingdom. You’re going through and you’re driving past all of these dinosaurs. Cars are on hydraulics so they kinda do all this weird (moves around in seat)… But the audio on that, even the introductory audio where they do the “time travel commences in T-15 seconds” is unbelievably loud. And so, when I was a little kid, I would go on the ride and I would just have to sit there with my hands on my ears. It wasn’t necessarily that I was scared of the giant dinosaurs. It was just so loud that my fear reaction was fighting me on every turn.

M: It is incredible that your love of theme parks was so strong that you put yourself in those situations. You refused to let these strong reactions stop you from the overall experience.

W: I remember when YouTube first came out and people would post videos of the ride and I just got to the point where I would memorize the dialogue so that I knew exactly when to cover my ears. I could kinda hang in there for some of the lighter parts but there were just a few points where I had to (places hands over ears).

M: Wow. That’s intense. So, listening to what you’re saying, it sounds like you describe yourself as someone who has over-responsivity to sound.

W: To sound. I have cravings for compressions. I have a weight blanket. Honestly, it could be 200 pounds and it wouldn’t be heavy enough. This is probably the most subtle of them all but, weird textures and stuff on my hand. It’s just kind of (shakes hands)…

M: Over-responsive.

W: Yeah. And it’s never bad enough, thankfully, that I can’t tough it out but it’s like “I want this off of my body… now.”

M: So, I am hearing you describe over-responsivity to sound and touch and that you seek out body input or deep pressure.

W: Yeah.

Impact of SPD on Childhood and Adolescence

M: So now I want to get into your memories of your SPD and how it impacted your childhood and even your adolescence. And it sounds like remarkably, through your resiliency and intrinsic motivation, you found work arounds.

W: I found work arounds. And it took the internet existing... and all sorts of stuff. And admittedly, I got a really great skill set from that initial treatment so that I knew... Andrea always used the Winnie the Pooh metaphor—Sometimes you’re Tigger and sometimes you’re Eeyore but you want to be Pooh. You want to be right in the middle. So, it... I had… and especially, just knowing what the issue was, made such a big difference for me. If it hadn’t been for my treatment at STAR Institute, we never would have known. And it would have just been “well he’s a scaredy cat.”

M: Outside of the Disney World anecdote, can you think of a time in high school or maybe middle school where that knowledge and understanding of yourself and your needs…

W: Basketball!

M: Ok. Tell me about that.

W: I have never played sports in my life.

M: Why is that?

W: I don’t know. I have always been more of an intellectual person rather than a physical person. Even though I’m this big lumbering guy... I’ve always... I’ve never had the coordination to do well in sports. And it always kind of… not only did I not really want to do it in the first place but I was kinda… it was kind of a demotivation, knowing that I had struggles with it. When I started playing basketball, I was awful. I had to play my freshman year of high school. I ended up on the team… because it was a requirement.

M: I was going to say, it doesn’t sound like an intrinsically motivating thing. But if it was a requirement, then you had to do something sports-related for the school?

W: I had to do something. I actually started out with a basketball conditioning course which was awful. It involved running ladders on the soccer field and, over time, it almost became a vendetta. Like “this is happening, dammit!” and there was weird coach drama… I was never like the star player but I did end up playing varsity senior year. We were really bad but I did play varsity and I was not the worst.

M: That’s huge!

W: Yeah. There was sports and there was video games. That was another one. My (younger) brother is absurdly good at video games. So, whenever we would play anything, I would get my ass kicked because when we would play just us, he would be better by default and when we would play online, it would always match towards (his skill level). And so, I had a long time where I just didn’t like video games even though I love and appreciate them so much as a medium. And it kind of took me going off to college and playing some games on my own to be like “you know what, I can do this.”

M: Because, for your age group, “gaming” is a real common occupation. It’s a social avenue and a leisure avenue.

W: And I love anything computer related and it was really hard early on. What video games taught me more than anything was the value of persistence. Like with Disney, when I watched the (ride) videos for fun and not even consciously realizing that “hey, this is preparing me for something.”

M: It seems that we return again and again to these examples of strength and resiliency.

W: Intrinsic motivation.

M: Yes, (laughs). It’s more than that, though. People can be intrinsically motivated but you, you have a lot of strength. The fact that you persist is a major part of you.

W: One thing I have learned in this world is “get knocked down seven times, get up eight.” It isn’t about who gets it done first, it’s about getting it done.

M: Do you feel that has to do with your experience with SPD?

W: Yeah. You know that they use that horse (bolster swing) that is suspended from the ceiling (in the clinic)?

M: Yes.

W: I always say, never has the saying “get back on the horse” meant so much. I remember trying and trying and falling and falling.

M: All of these stories have this common thread of how you were thrown more obstacles than maybe your peer group was and yet you still, because of intrinsic desire or personal vendetta, pushed through what would be debilitating for a lot of people.

W: And it’s not that I didn’t give up—because I did several times. But you have to ask for help. I had a friend who would play with me and he was so good at these particular video games and he would tell me, “every time you die, figure out what happened and don’t do it again.” Whereas, in the past especially with my brother, it felt like… I mean, we were playing first person shooters which are twitch reactions and if you don’t know what’s going on instantaneously, you’re dead before you can change anything. It became this different sort of learning process. I actually ended up beating the second to last boss on my first try.

M: That also speaks to one of your other strengths. You have a lot of cognitive abilities. A lot of people with SPD have to use their cognition to override their coordination issues, or problem solving or they even try to override that “ahh” feeling (mimics Woody’s hand shake from earlier).

W: The way that I would describe it is when something was going wrong, my brain had a plan and it was going to do that plan no matter what. Even if that plan was no longer viable. And it was learning to kind of recognize the situation and not just keep doing the same thing over and over again.

SPD and Relationships

M: You made mention of a friend. I want to start bringing relationships into this discussion. Do you feel that your SPD affected your relationships? How you made relationships? Who you made relationships with? What kind of relationships you had?

W: I tend to be very “huggy.” I tend to be a very physical person. So that can be kind of off-putting to people if they don’t understand where its coming from. Some people are ok with it. One person came up to me and she was like “hey it’s so good to see you” (and hugged me) and I was thinking “oh I’m sick I shouldn’t be doing this” but I almost did it by default and ended up hover hugging (mimes hugging without strong contact).

M: Do you feel like when you were a kid that you were drawn to more physical kids, then? Or quieter kids since you were sensitive to sound?

W: I was always drawn to kids… like my friend Morgan and I would sit at the picnic table on the corner of the playground and we would pretend it was like a giant super computer. I was drawn to… the more imaginative side of things.

M: You were drawn to kids that could keep up with you in terms of imagination and maybe weren’t making motor demands?

W: I was a talker… I wasn’t a mover.

M: You wanted the kid that could play super computer but not the kid that said, “hey let’s go kick a ball around and play some soccer.”

W: Exactly… Soccer was… a disaster (laughs). I tried soccer once and… I do not remember it this way. I remember calmly walking up to my parents and saying “I don’t want to do this anymore.” But apparently, I ran over (to them) screaming.

Sexuality Self-Discovery

M: I want to talk about when you became aware of your own sexuality. Was that something... from your memory, when did that start occurring for you?

W: The first memory… I was always… I don’t want to say flamboyant but I… I will commit to anything 100%. There’s this video of my brother and me dressed as the Cat in the Hat and I was like “I’m the Cat in the Hat! Who’re you?” And Lucas was like “I’m... Lucas.” And I was like “WELL I’M THE CAT IN THE HAT!”

M: So, you had a flare for dramatic?

W: That is a good way of putting it. The first memory of the word “gay” popping into my head was when we were sitting at Chili’s and some girl… this was like in fifth grade… allegedly started a rumor that I was gay. Initially I brushed it off like “No, no of course not.” But in my head, I was like “Oh god. She’s right.” It took... I didn’t come out until I was two weeks into college. It eventually got to the point where it was like “I can’t keep this a secret anymore. I just don’t know how to deal with it.” I… I hadn’t… I wasn’t the typical gay kid. Some of this relates to my SPD. I dress like this (gestures to his t-shirt and sweat pants) on most occasions. I wear sweat pants and T-shirts and jeans. Because that’s what’s comfortable. I don’t… I’ve always been the kind of person... it’s not what you look like. It’s not how you dress. It’s not necessarily the first impression, it’s what can you bring to the table. And that’s always the way that I’ve thought. Sometimes I wish the world thought a little more like that. So, I didn’t have these really typical markers. And I wasn’t... I wasn’t into fashion. I was a writer. Because of my fine motor skills, I was never an artist. And acting was fun but… but I think almost as a defense mechanism I almost strayed away from it. Which… I don’t regret anything but it’s still… yeah whatever. You were just kinda doing what you wanted to do instead of what you felt like you had to do.

M: You’re talking about when you went to college and where you put your focus?

W: Not college. This was in middle and high school. That was a really weird time because I had these conflicting signals. I’m a nerd. I like video game and computers... and I didn’t explicitly like boys but there were some times (hind sight being 20/20) where you’re like “yeah, no you didn’t just think they were great athletes…” But I was just... I just had these conflicting signals. And anytime that you’re different, it isn’t necessarily a strike against you but it is something that you have to overcome if you want to be a happy person. You have to be okay with the fact… with your differences.

M: You have to accept yourself.

W: And I was... I was never like the other boys. Never. And especially when I got to high school, that started to hurt a little bit. Because… I went… I went to a very small school. My graduating class was 76 kids. So I found myself trying to fit into this mold of… being somebody... trying to fit the mold of the typical...

M: In the group.

W: Yeah. Fit into the group. I… it took so much… I wanted to not be the different one and it inevitably back fired and I was the… I was kinda the... I’m prone to these awkward social situations where I kind of… cross the line. And also, I have really bad anxiety and really, really bad social anxiety. I also have a fantastic memory so I remember every little weird mistake so it’s like… “OK. So, everyone hates me.” That’s the mental image that I’ve got right now. And… I can’t be mad about it because… did it suck at the time? Yes. But everyone has times in their lives where things aren’t perfect. It wasn’t like I was miserable. While I didn’t get along with the kids as much, I got along with the teachers and professors. Like I would stay after class. Ms. Myers, she taught physiology, and we would just talk about music and all sorts of things.

M: You found that was a better match.

W: Yeah. And that’s something that extends to me now. Like my partner is 27 years older than I am. He’s like retired army... and we’ve been together for four years now. And most of my friends... tend to be older. They tend to be more the 40’s-50’s side rather than the 20’s-30’s side. I haven’t always identified with kids like that. And I have a few exceptional friends that are my age now.

M: That’s who you gravitated towards.

W: That’s who I gravitated towards. And I don’t know… maybe because I’m a little more emotionally mature than kids my age. Maybe because I’ve been… I’ve had a set of experiences where I don’t necessarily get along with kids my age. Because, kids my age tend to have significantly different interests than me. They’re catching up a little bit now since I’m in my mid-20’s.

M: I think it’s very interesting, you talked about what you wear. I think you used the term “markers” around, at least what your perceptions of, what a gay man would dress as or be into. You didn’t feel that you were meeting that perception, and maybe that was part of the confusion?

W: Yeah. And it like… didn’t happen until right around 2012 where... for example… I don’t know if you ever saw the show “Happy Endings.” Well there was a character. A gay character that did not present as “typically gay.” It wasn’t, it didn’t have that sort of...

M: Parody?

W: Yeah parody aspect of it. Like when I was a kid, I grew up watching Family Guy and American Dad and those are just… not great shows for that kind of …

M: Yes. Those are inflammatory shows for a lot of things.

W: This might actually be a relevant experience to this. I… the way that my coming out happened… I was watching “It Gets Better” videos on YouTube and I came to the Google one because Google did one. And there was one guy in there who, he… he was wearing like a college T shirt and... he didn’t present in the typical…

M: He looked straight?
W: I don’t want to say that he looked straight because I don’t like that terminology but… it was different from the perception that I had. Umm... and I actually wrote a little comment saying “I wish I could thank this guy.” Right after that, I put my parents on a conference call and told them I was gay.

M: So in that video... it turns out that he’s gay?

W: Yeah. Everybody in that series was LGBT. The fun part about this story is that I checked my messages on YouTube and he had actually written me back.

M: Wow! What did he say?

W: He was just like, “I was scrolling through the comments.” It’s usually just a bunch of inflammatory crap because YouTube comments are awful. And he saw my comment and said “I’ll send you a T-shirt or whatever. I’m so glad that I could help you out.” He actually sent me... they had these little android guys and they were holding hands and one of them was holding a little pride flag up. I cannot find the shirt. I think it got lost in one of my moves but it was… that was such an impactful experience for me. It was one of those few moments… ‘cause I’ve always been on the internet. The internet is where I grew up. I spent all my time on forums, websites. When social media first began, I was one of the first people to jump on that.

SPD and Sense of Self

M: For you, do you think there are any tie-ins between SPD and who you are now? Not just your sexual identity, but all aspects of you.

W: The way that I’ve always thought about it is that SPD has always been a part of me whether I have been conscious of it or not. And in the myriad of little decisions that each of us make every day… looking back, I can see how the SPD has affected some of those decisions and affected the way that I have kind of put myself out in the world and how I live.

M: Can we discuss that a little bit about that? About how you put yourself out in the world? Like I’m thinking of… I don’t know about how you maybe met your partner or previous partners or anything like that. My guess is that as someone with SOR, you’re not going to go to bars or loud places. Like that might not necessarily be your scene.

W: Oh god. Yeah. I’ve been mistaken for straight at gay bars. I don’t know how… well I know how I do it. I just kind of stand in the corner shaking.

M: Because of the sound?

W: The sound and the social anxiety. Sound has been become one of those things… It’s almost like… you know the saying that “a frog won’t hop out of a pot if you raise the temperature slowly.”

M: Yeah, you can acclimate.

W: I actually acclimate to sounds very well. And if it’s a song that I know and I know when it’s going to start and what’s coming, I love it. I used to love… in junior and senior year, I was really into electronic music and I went to a lot of Red Rock concerts. Admittedly, it was a lot to process but it was also… it was an experience… I was fascinated by the light shows and how much work goes into them because they were big and elaborate. I’ve always been a very sensory person at least in some regards. I love experiencing things. I love… whether it’s going on YouTube, going to Disneyworld, or concerts, I love new information. I love pushing my own limits because if you don’t, you’re gonna be stuck in the same place for the rest of your life. Nobody wants that. I want to grow and expand as a person. There are still limits that my SPD poses and I know that I will never be a professional athlete, but I don’t want to be running scared. It’s almost embracing… I don’t want to say pain… but discomfort or challenge. Just being able to learn and expand and push my boundaries. I think that’s something that having SPD, and going through the treatment model, instilled in me. The desire to push things and conquer my fears.

M: That you were safe to do that.

W: Safe to do that, yeah. The one fear I will never conquer is my fear of taxidermy.

M: That’s normal! (laughs) Has the SPD impacted your living with a partner versus living with a parent?

W: I think a little bit easier. Like he is… Mike is very like… he was in the Army for 20 years. He fills an entire closet with his own clothes. He’s very much my opposite in a lot of ways so it can be frustrating when… I do things… like it took me forever to kind of calm down and say, “you know what? I can dress nice once in a while. It’s not going to kill me.”

M: That’s one of those challenge areas?

W: Yeah. It’s the restriction of the clothes. It just drives me crazy. So it’s learning how… I’ve had to learn where sensory issues cause challenges with my partner and address them a little bit. I’ve had to do that with my anxiety. I’ve had to do that with… just being a 24-year-old dating at 51-year-old. There are inherent challenges to being with another person and my challenges are sometimes different from what other people face.

M: I like what you’re saying: Has my SPD created challenges in my relationship? Yes. Everybody has challenges in relationships. Some of my challenges happen to be around my SPD but not all of them.

W: I’m sure that if we talked for another hour, I could come up with another dozen examples. Again, it’s so entrenched in your brain... it’s not always apparent what’s causing the issue.

M: Like what you said, “I don’t have a conscious memory of these. They’ve always been a part of me.” There are times where you aren’t going to be able to see it.

W: I think we mentioned this the last time we talked. Whenever I get overwhelmed, I turn into a bit of an asshole. I just… I become antagonistic. It’s just my sensory…

M: It’s overload.

W: And what I’ve kind of had to learn to do is recognize the moments and sequester myself because I don’t want to say anything to hurt anybody and I know that I will and I won’t really mean it.

M: No because, you’re having a physiological response and its coming out in a behavior… it’s being prompted from this over-arousal…

W: It’s like electricity… I can physically feel it.

M: Now that you know that, you can identify it.

W: I struggled with that for a long time because I was like “I can say some really horrible things.” And it never occurred to me that SPD could be a factor for that.

M: Isn’t that incredible? Thanks so much for taking the time to talk with me and sharing such personal parts of your life with us.

If you are looking for SPD treatment for yourself or your child fill out a child or adult intake form now to be treated at STAR Institute Treatment Center or search our Treatment Directory to find services in your area.

Mim Ochsenbein, MSW, OTR/L has been a practicing pediatric occupational therapist for over 20 years. She has received advanced training in sensory processing (STAR Institute Intensive Mentorships, SIPT certification), listening therapy (Therapeutic Listening), feeding therapy (SOS) and infant massage (CIMI). Mim received her MSW in 2012. Her work with children and youth has occurred in a variety of settings including early intervention, school based, clinic based, mental health and private practice. In her role as STAR Insitute’s Director of Education, Mim creates and teaches STAR Institute trainings, oversees SPD University, and provides educational programming and resources for clients and families.

by Mim Ochsenbein, MSW, OTR/L

Intervention

My Life Path with Sensory Processing

STAR Admin — Thu, 05 Apr 2018 20:54:54 +0000

My Life Path with Sensory Processing STAR Admin Thu, 04/05/2018 - 20:54

I’m Sarah Norris and you probably know me from the STAR Institute videos on Sensory Processing Disorder (SPD). Recently, we’ve been asking the adult SPD community to share their sensory stories with us so we can create more community and awareness for all. Today, I’m sharing my story of how I’ve chosen this career and how I address sensory challenges in my own life.... (BUT remember to read Carrie's story too!)

As an occupational therapist, I have gradually become aware of my own sensory processing challenges. As a kid, I was labeled a tomboy, and that pretty well captured my sensory profile. I hated “girly” clothes, loved to play in the dirt and mud, climbed trees, and even broke my collarbone playing rugby with the guys in sixth grade.

As a teen, I was labeled a geek, and that captured me pretty well, too. I loved reading, writing, math, science—everything except history. I was an athlete, musician, in drama, and always, always busy. I attended small private schools and did really well. I was able to explore all my interests with the level of intensity I craved.

Then, college happened. I made it through, but it was a big adjustment and so much harder than high school. The schools I went to for college were too big to know everyone. In fact, I knew almost no one, and didn’t know how to “put myself out there” to meet people very easily. The cafeteria was massive, loud, and always stinky. Assemblies and most of my lecture classes were overwhelming.

I shared a room for the first time since childhood (with a stranger, no less), and my go-to strategy of “escape to regulate” didn’t work. I no longer had a “sensory safe space.” It didn’t help that I really hated my roommate’s musical preferences. I poured myself into my studies, gave up on making friends, and just got through it. I holed up in my dorm room when my roommate was gone, then left for the library or my boyfriend’s apartment when she was around. During that period of time, I was diagnosed with depression, and looking back at that time, it’s no wonder I was depressed. I started counseling and taking medication, which helped me some.

Another layer to my story is that my mom was diagnosed with brain cancer when I was seven. She had a tumor in her frontal lobe that was the size of a man's fist. She underwent brain surgery followed by aggressive chemotherapy and radiation treatments. Doctors did not anticipate her living beyond six months, but she ended up living for more than 20 years after her surgery and subsequent treatments. She was the first survivor for the kind of brain cancer she had. While she was a medical miracle, she was forever changed by her disease. She never returned to "normal."

At the time, doctors had very little understanding about the long-term effects of her cancer and the treatments they used on her. They did not know what to tell my family to expect, nor did they know what supportive services she/we needed. No one really knew. As you can imagine, living with someone who has significant neurological damage had its challenges, not only for me, but for the rest of my family as well. My family and I were fortunate to have many wonderfully supportive people in our lives, but nothing could "fix" my mom or the vast disruption in normalcy her disease caused in our family.

I've done a lot of counseling and worked through a lot of big emotions around losing my mom; once at seven, and again, for good, at 29. The silver lining of all this has been the heart this experience has given me for all people with disabilities, especially those with neurological conditions. I believe growing up with a disabled parent is one of the biggest factors that led me to becoming an occupational therapist.

As an adult, I’ve really poured myself into my job, marriage, and kids, and I really love my life. But I have also experienced a lot of imbalance and have struggled to take care of myself along the way. I’ve done a lot of counseling, read a lot of self-help and therapy process books, and tried various medications. I’ve been diagnosed with fibromyalgia and an anxiety disorder. I’ve worked for years to understand myself and learn to take care of myself.

Being an adult is hard. Most days I cannot believe I am actually considered an adult. On my good days, I consider myself a “highly sensitive person.” On my “sensory” days (where I’m easily overwhelmed and triggered by my sensitivities), I fall more squarely in the Sensory Processing Disorder camp.

My sensory challenges (and those of my children) have honestly made it kind of hard for me to figure out what is normal and what is dysfunctional. Luckily, I work with some really amazing people who help me figure it out as I go. Because of my knowledge about sensory processing, I am pretty sensitive to my kids' sensory needs. They definitely inherited some sensory processing challenges from me. I’ve also noticed my knowledge of sensory processing differences has really helped me understand points of conflict and differences in opinions and preferences between myself and my friends and loved ones. I've found the knowledge of sensory processing (and neurological differences in general) has made me way more understanding and open to others' perspectives than I was before I knew about it.

Here is what I have figured out about my sensory profile so far: My biggest challenge is my over-responsiveness to sounds. The sounds my kids make (especially crying, whining, and screaming) and background conversations are especially challenging for me. I get visually over-stimulated by fluorescent lights and clutter, so grocery shopping is really challenging for me, especially in unfamiliar stores. I react strongly to smells, both positively and negatively. Certain smells really soothe me, but perfume can give me headaches. I am sensitive to light touch and can over-react to being touched unexpectedly, but I love deep pressure touch, fidgeting, and really hot showers. I hate crowds and almost always have a meltdown or migraine during/after professional conferences. I am under-responsive to my bodily sensations, including vestibular (movement), proprioceptive (position), and interoceptive (internal bodily sensation) signals. I have bad posture, need to move frequently to stay awake, keep from getting stiff and sore, and to recognize when I am hungry, thirsty, or need to use the bathroom. I have joint laxity/low tone and get injured easily, especially in my lower back, knees, and ankles. When I am still for too long, I don't pick up on my body signals until they're really strong (like "there's no way I'm making it to the bathroom" strong; pregnancy/birth has NOT helped this challenge).

One huge benefit of my job is that I have amassed a huge volume of information about sensory processing. I’ve found a lot of helpful strategies to overcome my sensory challenges. Some of them are more functional than others. For example, to manage my sound sensitivities, I constantly tell my kids to be quieter, use their inside voices, or that what they are doing is bothering my ears. I use noise-canceling headphones or earplugs often. I keep some high-fidelity earplugs in my purse because I need them anytime I'm shopping, in a busy restaurant, in movies, or at concerts. I've found music and auditory input really affects my energy level. I use brainwave music, guided meditations, or playlists of my favorite artists/songs to help wake me up in the morning, focus at work, drown out noise when I'm shopping or traveling, and calm me down so I can fall asleep in the evenings. My kids know if they want to listen to songs with lyrics in the car with me, they cannot also talk, or I turn the music off. I like background music during dinner, but it can't have any lyrics. I almost never have my phone ringer on and snooze my alarm immediately when it goes off (all 3-5 times). I prefer to read subtitles or transcripts for videos and almost never have the sound on for video games (or if I do, it's at the lowest possible volume). I cannot process very much auditory information without also fidgeting, taking notes, and/or seeing things in writing.

To manage my visual sensitivities, I have taped over everything in my bedroom that emits light with black electrical tape, do my best to conquer clutter in my house (it's SO HARD with kids), and try to get outside in nature at least once a day to soak in some natural lighting and nature scenes. I have an alarm clock with a daylight/sunrise function that turns on about 30 minutes before my sound alarm that helps me wake up in the morning (since I don't let my alarm go off long enough to wake me up). I keep three different kinds of tinted glasses in my purse; sunglasses, "computer" glasses that block blue light, and blue tinted glasses that make driving at night or being in a place with a lot of fluorescent lighting tolerable. My office mates and I never use the overhead fluorescent lights in our office and use lamp lighting instead (I am so fortunate their visual systems are similar to mine).

Things I have found that support my responses to smell are largely related to the environment I am in. In my office, no one wears perfume/cologne or uses strongly scented body products. I personally use unscented or naturally scented products for washing my clothes, cleaning, and bathing. I love essential oils and have a pretty big collection of scents that I use for a variety of purposes. When I am not in a supportive environment, I tend to breathe shallowly because it protects me from getting big whiffs of unpleasant smells.

As far as touch goes, I have always loved big, long, tight bear hugs. Weight, pressure, heat, and vibration are hugely calming for me. I have a 20-pound weighted blanket that really helps me relax and unwind. I have a cat who loves to lay on my chest and purr loudly - it's the best thing ever. I usually enjoy snuggling with my kids or husband, although sometimes I can't handle it. My husband has learned he cannot touch me without warning me and getting permission first, especially if I'm immersed in a task and don't see it coming (I may have hurt him and/or his feelings more than once). I take super-hot showers and constantly turn up the heat to cancel out the sensation of the water droplets on my skin. I tend to dress in layers and keep blankets handy because I do not like being cold or being touched by anything cold (another thing my husband has learned to put up with my over-reactions about).

As I mentioned before, I use sound, visual input, smells, and touch input to help me regulate. I also rely heavily on caffeine, chewing gum, and video games. I struggle with being motivated to get up and move, especially when I'm really focused on a task, but man, does it make a difference. I have a smart watch that reminds me to get up and move every hour if I haven't, which really helps me remember to at least get out of my chair and stretch, go to the bathroom, or get a drink of water. I am really lucky to work in a profession where swings and large exercise balls are readily accessible, because they are really helpful in bringing me out of an energy slump quickly. I also rarely get to stay in one place for long in my job, which is great for me. I really enjoy exercise when I get around to doing it (as long as I don't overdo it, which is another thing I struggle with). Running, swimming, yoga, pilates, and high intensity interval training work well for me. I've found that making a rule for myself to get out of the house every day on the weekends, at least once, makes a huge difference for me, too. I tend to be overly sedentary and it is not good for me for so many reasons. I have three different kinds of swings, two exercise balls, and a rocking chair at home that have helped me cope with a rough day more times than I can count.

Working at the STAR Institute for SPD has deepened my understanding of sensory processing and all the different ways it impacts all of us in all of our different states of functioning. I think the STAR Process is so effective because it recognizes the widespread reach that neurological differences have on a person's life, and that the impact spreads far beyond the individual. The STAR Process beautifully combines the scientific basis of how sensory integration works with addressing the relationships and mental health factors that surround and complicate SPD. It's a strengths-based model that focuses on what an individual CAN do, not on what they cannot do. The intensive model helps disrupt habits and behavior patterns that get in the way of clients making progress and identifies supports and strategies that can get them back on track with growing, improving, and feeling good. I've seen this approach not only give people hope, but empower and transform their lives. It's a beautiful thing.

If you are looking for SPD treatment for yourself or your child fill out a child or adult intake form now to be treated at STAR Institute Treatment Center or search our Treatment Directory to find services in your area.

Presented by adult SPD specialists, Carrie Einck, MS, OTR/L and Sarah Norris, MS, OTR/L who have spearheaded STAR Institue's renowned adult and adolescent treatment program.

Sarah Norris, MS, OTR/L

by Sarah Norris

The Self-Care Struggle for Special Needs Parents

STAR Admin — Fri, 02 Feb 2018 17:23:56 +0000

The Self-Care Struggle for Special Needs Parents STAR Admin Fri, 02/02/2018 - 17:23

It’s so easy to get wrapped up in the day to day stress of work, kids, house duties, errands, etc. It’s easy to forget about yourself, the parent. Add on to that list the responsibility of caring for a child with Sensory Processing Disorder (SPD), and you have the perfect storm for exhaustion. It’s overwhelming when you think about all the insurance phone calls, the therapy appointments, activities that are needed for sensory regulation at home, fighting through homework, fighting to get your friends and your child’s teachers to understand, all the while trying to maintain the high demands of parenting to begin with. It’s exhausting.

I recently encountered some health issues of my own. Nothing major, but a harsh reminder to myself that I have to make myself slow down, or my body will force me to. I’m not the only parent of an SPD child out there in the same boat. I talk to many SPD parents in our area on a regular basis. Some are new to the arena and some not so much. The unanimous consensus is that we’re tired. Often our phone conversations will start after the kids go to bed because that’s the only quiet time that we have. We have so much to talk about that it’s midnight before we know it. As crazy as that sounds, we so need the interaction with another parent who understands it all, and often times can just listen. We fall into bed everyday exhausted. Just when we think we can catch a few hours of sleep, our kids (thanks to SPD causing disrupted sleep patterns), come crawling into bed with us or are just ready to go for the day. Then it’s time once again to put our best feet forward and start it all over again the next day.

First, I want to challenge you with a question. What do you do to take care of yourself?

What activity is solely for your benefit, for your personal wellness? I’m not talking about your yearly physical at the doctor or those ten minutes you get in the car line at school while waiting for dismissal. I’m talking about soul food, meditation, time with your friends, time alone, date night with your spouse, quiet time to read a book, or do a hobby you love such as painting. Maybe you’re so wrapped up in day to day life you don’t even remember what these things are or what it was like to have time to do them.

Next comes the big challenge...

I want you to sit down for five minutes and make a list of those things that you miss and want to do. Find time to do one of them every week. Maybe you can only carve out fifteen minutes to start. Find the time. Do it with no distractions. My biggest pet peeve is when people say, “I don’t have time”. The answer I have to that is… you need help with prioritizing! You are the priority to your child. He or she needs you and they need you to be well, both physically and mentally. You can’t help others if you’re not in good shape yourself, in all departments.

So please, take the time. Just do it. I promise it will be the best gift you can give yourself. You deserve every minute of it because you my friend, are a superhero.

If you are looking for SPD treatment for yourself or your child fill out a child or adult intake form now to be treated at STAR Institute Treatment Center or search our Treatment Directory to find services in your area.

STAR Institute for SPD needs your help to support SPD awareness, treatment, research, and education.

Donate $25 today!

by Meggin