Parent experience

ADHD

Sensations: Too Much, Too Confusing, or Not Enough?

STAR Admin — Mon, 01 Apr 2019 19:57:21 +0000

Sensations: Too Much, Too Confusing, or Not Enough? STAR Admin Mon, 04/01/2019 - 19:57

Sensory processing challenges appear in a variety of ways...

What is the matter with Mary Jane?

She’s crying with all her might and main,

And she won’t eat her dinner—rice pudding again—

What is the matter with Mary Jane?

A.A. Milne’s poem about miserable Mary Jane used to mystify me. As a child, I knew that not everyone loves rice pudding, but I wondered why she was having a tantrum. Couldn’t she say, “No, thank you,” and then just get over it?

Now that my older eyes are open, I’m more sympathetic. Evidently, Mary Jane can’t communicate to her grownups that she hates rice pudding. Maybe she’s two, so she behaves like a two-year-old. Maybe she is full. Or—what is now my go-to answer—maybe she has Sensory Processing Disorder (SPD), which makes “just getting over it,” all by herself, difficult or even impossible.

Like Mary Jane, some children withdraw not only from grainy or odd-textured food, but also from physical contact. They may refuse to participate in experiences that other kids enjoy, communicate ineffectively, and respond in unusual ways to ordinary sensations of touch, movement, sight, sound, smell, and taste. These kids may have SPD, so they don't behave as we expect—not because they won’t, but because they can’t.

SPD is real—and it’s common, affecting about 17 percent of children and adults. SPD begins as a physical condition but may later develop into a psychological condition; if underlying sensory issues are ignored, a little kid often begins to feel shame, low confidence, rage, and loneliness.

Sensory processing is what everyone does, all day. Sensory messages come in through receptors near the surface of, and deep within, the body—the skin, eyes, nose, mouth, outer ear, inner ear, muscles and joints, and internal organs.

For a typical person, the central nervous system efficiently processes the incoming sensory information so she can use it to yank her hand from a scorching frying pan, pull the right boot onto the right foot, or catch herself before she trips.

But for an atypical, “out-of-sync” person with SPD, an inefficient central nervous system garbles sensory messages—meaning that he can’t use them to function smoothly in daily life. He burns his hand on the pan handle; he mismatches his boots and feet; he stumbles and falls.

The most common and easily observed SPD issue is over-responsivity. Over-responsive kids may be provoked by an unexpected touch, lumpy sock, speed bump, siren, fluorescent light, scented crayon, rice pudding, and so forth.

But though this is SPD’s most common outward presentation, not everyone with the condition has over-responsivity. In fact, children or adults with SPD may not be bothered by sensations at all and may seek more, not less stimulation. Many of these individuals have less obvious types of SPD—these can look like ADHD, Oppositional Defiant Disorder, or other psychological issues in the DSM-V.

What is the matter with Mary Jane? SPD may be—or it may be exacerbating—the main problem. Put on imaginary “sensory spectacles” to examine the situation and ask yourself, "What sensations are too much, or too confusing, or not enough?"

Here are possible reasons for Mary Jane’s behavior:

Sensory over-responsivity. Sensations threaten her. She sees and smells the dessert and anticipates how disgusting it will feel and taste in her mouth. Her sensory systems say, “If you eat it, you’ll die.”

Poor sensory discrimination. Sensations confuse her. She may be unable to discern textural differences between grainy rice and smooth pudding in her mouth. Even if she likes the flavor, rice pudding may make her gag.

Sensory craving. Ordinary sensations are insufficient. She needs constant, intense sensory input. Pudding is not the problem; inactivity is. Today, she hasn’t played outdoors enough, and her body yearns for sensory-motor activity. She may feel as though she cannot sit still a minute longer.

What helps? If, through your sensory spectacles, you see that Mary Jane is overwhelmed, then lower the sensory load. Replace the offending food with one she likes so she will stay peacefully at the table. Or, if you see that she is fidgety and craves movement, then raise the sensory load. Let her go jump rope, stretch an exercise band, dance to music, or hang from a chin-up bar.

If Mary Jane’s behavior is frequently out-of-sync at school, at home, and out and about, it may be necessary to have an occupational therapist who uses a sensory integration approach evaluate the child. Insisting that she eat rice pudding will never work; addressing her sensory processing challenges with understanding and appropriate treatment will.

*Original article featured on Psychology Today

Carol Stock Kranowitz is an internationally-recognized expert on sensory processing disorder (SPD). She is the author of the “Sync” series, which began with the acclaimed The Out-of-Sync-Child.

As a music, movement, and drama teacher for 25 years, Carol observed many out-of-sync preschoolers. To help them become more competent in their work and play, she began to study sensory processing and sensory integration (“SI”) theory. She learned to help identify her young students’ needs and to steer them into early intervention. In her writings and workshops, she explains to parents, educators, and other early childhood professionals how sensory issues play out—and provides enjoyable sensory-motor techniques for addressing them at home and school.

by Carol Stock Kranowitz, M.A.

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.

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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

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 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.

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.

by Sarah Norris

Adults and SPD

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

It Takes a Village

STAR Admin — Mon, 09 Oct 2017 15:32:16 +0000

It Takes a Village STAR Admin Mon, 10/09/2017 - 15:32

"It takes a village to raise a child." I can't tell you how true this phrase has been for my family because of my 12-year-old son, Jackson, who has Sensory Processing Disorder (SPD). As we've traveled along our SPD journey, I'm not sure what we would have done at times without our village. As I type this blog I'm sitting inside a barn watching Jackson clean out a goat pen (more to come on that in a bit). It's easy to forget about the amazing people that surround us when we get caught up in day to day life.

For most of us our village starts with our child's birth and is usually confined to immediate family. As the baby grows we begin to navigate the world socially and add to that group. As an SPD parent, this village began growing sooner than most for me. Soon after Jackson was born it became more and more apparent that something was "off" and so I began networking.

The first additions to the village were physicians as we began trying to narrow down the root of his problems. As in life, we let some of them go right back out the same door that they had entered. We finally found that one amazing doctor that said the magic words: "I don't know what's wrong either, but you're the mom and if you think something is wrong then it is and we'll figure this out together." She is still a big part of my village.

The next addition were therapists. Over the next few years we would add three occupational therapists, one physical therapist and a speech therapist. Each one brought a new view and a new light. Their talents and insight helped fill the buffet table that we were creating for Jackson. Even the therapists that he didn't click with and had to move on still contributed to the knowledge that we were accumulating.

Some of the greatest additions have been our friends. Sure, we lost friends along the way; friends that didn't know how to help or what to say or do and slowly faded into the background. The friends that we've met along the SPD path, though, are so precious and vital to us. They listen and offer help. Some are living with SPD kids themselves or have a special needs child. Others have no direct relationship to SPD or special needs but still offer that much needed unconditional support and love.

It's here that I'm going back to the goat pen. It was through our local taekwondo studio that we met an amazing family. Rob, Jaime and their son have no connection to SPD at all but over the past several years they have become close friends. They became aware of how much Jackson was struggling with many areas of life even as he was refusing to continue with therapy. Rob has a deep love for animals and has a small farm with two pygmy goats, Hank and Charlie. One day I received a message from Rob asking if Jackson would be interested in coming to help him on the farm once a week. There would be various things to do such as caring for the animals, cleaning out the barn, building furniture and mending fences. As he was talking all I heard was "outdoors, heavy work, dirt," along with so many other components that are occupational therapy based. Jackson was super excited about it and has been working with Rob for the past six months. From the beginning, Rob made it clear that he had no clue how best to help Jackson or what the goals were but said that if I would help guide him with projects that would benefit Jackson then he was excited to learn. Jackson loves it. Rob pushes Jackson out of his comfort zone and has infinite patience. People like this are an integral part of our village and no words can repay them for the unconditional love and friendship that they bring.

The hardest part for me has been learning to lean on this village around me. I'm beyond stubborn and have a hard time admitting that I could use help. I'm the one who takes care of everyone, not the other way around. Slowly but surely, (and honestly out of bare necessity for survival at times), I began to lean on these people who were so willing to help. What I found was that I was met with smiles. I was met with hugs. I was met with listening hearts. I was met with a village that is such a gift that there are no words to describe it.

Don't forget your village. Even if you don't think that you have one, you do. It's okay to lean on them on occasion. We all know that being an SPD parent isn't easy. In closing, I guess this blog is a love letter to those very special people who have surrounded my family with a net of love, friendship and support. It's a letter of deep gratitude and thankfulness. You know who you are.

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 raise $30,000 in the month of October.

Donations go to SPD awareness, treatment, and research.

Donate $50 today!

by Meggin

A New Conversation

STAR Admin — Tue, 03 Oct 2017 17:30:26 +0000

A New Conversation STAR Admin Tue, 10/03/2017 - 17:30

Yesterday we launched our Sensory Awareness Month campaign with the central hashtag #itsnotautism. Our intention was to challenge people to start differentiating between individual differences in every expression of humanity; however our intentions were not clear enough and this hashtag offended many readers.

Firstly, we want to simply say Autism is not a dirty word.
Secondly, we want to say that we hear you. Without context, this hashtag came across as stigmatizing rather than embracing neurodiversity.
Thirdly, we want to say thank you, thank you so much for talking to us about this, for taking the time to make your points, and for answering our messages when we reached out to you.

We do not want to shut this conversation down because even though it is difficult, it is important, and it must continue if things are ever going to change. So, while we have taken the meme down out of respect and a desire to cause no further offense, we also want to provide a platform for your voices on this topic. So please, keep messaging us and keep sharing with us. We are listening.

Kieran Rose, an adult on the autism spectrum and a blogger, wrote in and gave us this great advice:

“Rule of thumb with all neurodiverse communities: speak to us, speak through us, but don't speak for us. We need to be empowered and enabled.”

So, let’s discuss the first point. Autism is not a dirty word. We were challenged by some readers who were concerned that we were feeding into the ‘I hope it’s not autism’ concerns of many parents. We were challenged by others that singling out autism communicated underlying negativity regarding the diagnosis. So, we want to be clear on this point. Autism is a neurological variation, an expression of human diversity, and not something to be stigmatized or shamed. An accurate Autism diagnosis brings freedom and understanding for many. Mario Cirrus, one adult on the autism spectrum who talked to us about his difficulty with our hashtag, describes this beautifully in his blog post An Analogy to Explain Autism.

Correct diagnosis should be freeing and enabling, and autism and the autistic identity is beautiful and needed. A world dominated by neurotypicals would be sadly homogenous and lacking in such important variety and color.

Many people did comment positively with regards to this campaign. Debbie Venters-Scott, from Scotland, has found that her daughter's sensory processing difficulties have been constantly dismissed as simply ‘part of her autism’, with no attempts ever made to assess, support or provide treatment for what exactly her needs might be. Many of you have experienced this kind of dismissal of your sensory processing challenges. So that’s where we are moving to now, with the #UnderstandSPD emphasis. Enabling, empowering, and advocating, and hopefully this time we will be clear in our message.

Another autistic blogger who wrote in about this said:

“Funnily enough, I think this hashtag that has been perceived as 'not great' is possibly a really good starting point for discussion. It might give you guys an audience to contribute to that bigger conversation that needs to be had.” - Point Hacks and Autism Friendly Family Travel

We are committing now to continuing to listen, to continuing to have this conversation and we will do everything that we can to do it respectfully and reciprocally.

We want to end with some feedback that really resonated with us as important:

“It is important to be non-divisive in a community that really REALLY needs to support one another.” - Faith, Rantings of an ADHD Mom

So say we all.

by STAR Institute for SPD

Toileting and Interoception – How to Help Struggling Children

STAR Admin — Tue, 25 Jul 2017 15:05:42 +0000

Toileting and Interoception – How to Help Struggling Children STAR Admin Tue, 07/25/2017 - 15:05

This is a follow up article to the blog post titled This Hidden Sense Affects Potty Training and Toilet Accidents in Older Kids.

Helping children who are struggling with toileting should be approached as more of a marathon than a sprint. A child with toileting issues may actually be struggling with a little known sensory system called interoception.

Interoception refers to your ability to perceive and understand your internal sensations, like hunger, thirst, the need to use the bathroom, feeling hot or cold, and fatigue. If you understand what you are feeling, you can act to meet your need effectively. Many professionals, including doctors and occupational therapists, do not know about this 8^th sensory system, and consequently children can struggle with toileting throughout their youth. Obviously, this can stifle self-esteem and social relationships.

Working with your child from a view of long term gains rather than quick fixes will help you stay patient as your child begins to learn about their own body in a way that they have previously been unaware of.

Before you begin any program focused on Interoception Intervention, all parents need to talk to their physician to make sure there are no other physiological issues that could be causing the problem, such as infections or issues related to hormones that release at night that help prevent night wetting). This should always be the first step. After that, if it is determined that this is an interoception issue, there are things that can be done to address the immediate need and to work on the overall issue.

There are 5 Steps of Interoception Intervention (adapted from Kelly Mahler):

1) Educate

2) Implement adaptions for reduced interoceptive awareness

3) Notice sensations

4) Give sensations meaning

5) Use interoception awareness to build related skills

1 - Educate

Parents: Learn as much as you can about interoception. Knowledge is power. Being better able to understand your child’s experience, an experience of the world that is different than most people’s, will mean you can help find more solutions while having more empathy.

Read up on interoception on the Your 8 Senses page (free)
Download Interoception: The Hidden Sense (free)
Check out these interoception resources from Kelly Mahler including a Facebook group (free)

2 - Implementing Adaptions

Often a child with interoceptive deficits will present with toileting needs requiring immediate attention while they work on interventions to improve their overall interoceptive awareness. Your child may need a few adaptations to what is currently being implemented. Here are some suggestions that can make a big difference. For adaptations geared more towards your child’s specific needs, please contact your Occupational Therapist.

Visual supports: Make a visual schedule of bathroom breaks (example: picture of bathroom sign related to child’s identified gender with “Bathroom Breaks: 9:00, 11:00, 1:00, 3:00” underneath)
Memorized rules: Always go to the bathroom 1 hour after drinking water; or always using the bathroom before leaving a place and when you arrive somewhere
Write and read social narratives: In story form or as a memo write out the process of when to use the bathroom as it pertains to that child’s daily schedule
Use Technology and Wearables:
- Cell Phone alarms and apps
- Watchminder: vibrating reminder watch (www.watchminder.com)

3 - Notice Sensations

4 - Give Sensations Meaning

5 - Use Interoceptive Awareness to Build Related Skills

These remaining three steps (steps 3-5) for Interoception Intervention are all areas that a family/individual should work on with a trained Occupational Therapist. It requires assessment of interoception and developing interventions designed for that individual. Specific interventions should be designed by and implemented with an Occupational Therapist trained in sensory processing. To work with a STAR Institute for SPD Occupational Therapist, please fill out the Child Intake Form or find a therapist in your area by using the Treatment Directory.

If you are looking for Sensory Processing 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.

Mim Ochsenbein, MSW, OTR/L

Intervention