A snippet from my Interview with Christy Birmingham-Reyes from When Women Inspire
Christy Birmingham-Reyes from When Women Inspire is a wonderful advocate for Women and you can read the whole article on our “News & Views” tab.
Christy: Let’s talk about the sensory-soothing CozyThrow💤 & CozyCo💤 blankets! What is Sensory Processing Disorder (SPD)?
Liz: Well, first, I would like to emphasize that my whole Cozy💤 line (always WITH the “💤”) is for anyone that struggles with getting & staying warm. I intentionally decided that this first line should be for a much broader audience than just people with SPD. My larger vision for my company is to “shine a light on Sensory Processing Disorder (SPD).”
SPD is a complex neurological disorder that is on the Autism spectrum [my brief layman’s explanation]. Each person’s triggers for any given sense combined with how that sense is triggered and experienced makes SPD difficult to diagnose and more so to treat. Combine that specific nuance with what combination of senses are being triggered makes it even more complex. Literally no two people have the exact same triggers. That said, there are plenty of similar experiences as we each try to tackle solutions for any individual “sense”.
For me, if I get hit hard by a sensory overload in ONE sense, the other senses can domino — meaning that the other senses become even more likely to be affected. Then, if I’m in an environment that I can’t get to solutions and/or there’s a lack of compassion, then sometimes panic can set in, which can also send me into a really bad state of pain! All of that is a simple example of what can happen that’s specific to me. Each person’s triggers/combinations/specific reactions are unique to them.
I have learned and can easily imagine that no two people with SPD are alike. However, there is plenty of “crossover experiences” that can help individuals find solutions. If you have a narrow range of comfort with temperature, for example then we can share our specific solutions for that trigger. For me, temperature is a big one, but it’s also only 1 of 10-15 other sensory triggers. The ONLY way I have been able to come up with solutions is to take one at a time. I call that “untangling the mess”!
How can CozyThrow💤 and CozyCo💤 help those who have sensory issues?
Liz: While they are for ANYONE who wants to stay warm. The micro-adjustments are key! Temperature regulation is very important to MY SPD. Not everyone with SPD will have the same triggers as I mentioned.
Since our mission is to Shine a Light on SPD, I like to give people a little exercise to understand using their own experiences. Imagine, for simplicity purposes, we have five senses (there are more, but we’ll start here). Within those senses are nuances experiences. For example, my “touch/tactile sense” requires several individual solutions:
- Anything that touches my skin HAS to be soft. I literally shop by touch — IF it is soft enough, then I decide if I like it.
- I cannot stand tags on my clothing. When I buy something, ALL tags have to go!
- I only take baths, showers hurt. Every place I have ever lived, a bathtub is a requirement.
- For temperature, I have a very narrow range of comfort. If I don’t warm my extremities, then I simply will not get warm. But if I let any part of my body (especially my feet) get too warm, they will start to burn. If I don’t stop that immediately (preferably before), too hot can be worse than too cold
These are just a fraction of what I struggle with in my SPD. I have learned that if I tune into the “sensory experience” before it gets bad, then I can exist fairly well. But as soon as ANY sensory experience goes too far, I now have to “recover,” which can be much more difficult and takes quite a bit longer. Beyond that, if ignored with the “just pretend it’s not affecting me” technique, the other senses become even more susceptible and can domino quickly! Not only do the other senses become hyper-anxious, but this domino effect can completely debilitate me. Recovery from this can be very difficult.
While we are talking about sensory struggles, I think it’s important to note that emotional and mental states affect our nervous system too! More than anything, we want people to NOTICE their nervous systems. What makes you feel very amped? How to you recover from that? If our products can help people CHOOSE to seek out the feeling of having their nervous system relaxed, that would be so amazing!
Most people have never even thought about their nervous system. Even for those that can evaluate that their nervous system, most don't feel like they have a CHOICE — it is what it is. But what if we developed tools that helped settle an amped nervous system? Wouldn't that be a good thing? This is what I invite people to connect with in their own nervous system with loving honesty. I mention the “loving” part to remind us that it’s truly good to tune into this, even if it sounds scary. Maybe because if we are honest with ourselves, sometimes it may require changing things up in our lives, which can be scary. For me this is one of the “gifts” of my SPD — that I HAVE to notice these things, if I don’t, I can get into trouble really fast. NOTICING what happens when I experience any and all the individual aspects that trigger me is the ONLY way to be able to function. Of course, just noticing isn't enough, but it IS where we have to start.
For me, once I have identified the trigger, I try to give myself the opposite of what triggered me — as the place to start.
- Too much light in my eyes? Darkness helps.
- “Wrong” things touching my skin? Go to extreme soft/good things. Plus dry brushing helps me get better faster.
- Toxic smell? This one was so hard for so long, because I could still smell it even after it wasn’t in the air anymore. But I discovered a few herbs that I keep around in little mesh pouches.
- Temperature? I have to see what specifically it too hot or too cold. Rarely is it 100% one or the other. Is it my hands or feet too hot or cold? I have to look very specifically because, if my feet are cold, but rest rest is fine, if I warm my whole body, soon I'm way too hot. (This is why I designed CozyThrow💤 to be able to micro-adjust to just right!)
- Difficult sounds? Ear plugs work to some degree, but I just have to get away from them as quickly as possible.
- Taste? I am VERY picky here and cannot eat many foods. Beyond that even if I LIKE the food, if I'm not “in the mood” for that food, I will not eat the whole portion. I can usually solve these things by making my own food, but sometimes I find it soooo annoying!
Personally, my CozyThrow💤 really helps with calming mental/emotional stresses as well as my temperature sensory triggers. I can’t promise it will do the same for all, but the first step to healing, growing, and understanding oneself, is to be aware of what happens in your body/mind/emotional state when you are triggered. This is where we have to start. What is causing the distress? Usually, it has multiple levels of response and I find that emotional & mental triggers have deep effects to my nervous system as well. When I’m in that “I've been hit hard” state, I try to identify all the parts that are being triggered? First, what happened that caused this? Second, what can I do to counteract the current situation — this is the RECOVERY stage. What are the things that HELP when you have been knocked down? For me, I have a couple consistent things that help regardless of this particular trigger are:
- Cuddling with my animals, pretty much always helps at least a little. My service dog, Rigby, always can help to center me. My kitty, Sadie, helps too, but much more on her terms — but when she does offer help there is something wonderful about feeling her purr. I find that also if I want her to “stay with me” I have to shift my energy to be compatible with her. When I can consciously do that, it takes me closer and closer to center.
- Submerging myself in water. Not a shower, which actually hurts me, but fully submerged in water consistently helps me. My whole life, every place I've lived, if a place didn't have a bathtub, it was a dealbreaker.
Having tools to recover faster – whatever they may be. Through my whole life before I “knew” anything about SPD, I have either made or adapted products that might help… so many DIY products! I have found that the more pain I'm in, the best creative ideas happen. Though actually making the products usually requires being in a better place, where I can function. I find, the more we tune in to the very specific experience(s) especially when we are hit hard by a sensory overload, the more we can “claim” that this is REAL. And the more we can sort it out, this includes communicating with loved ones as well as finding solutions to the very REAL things that you go through. That is vitally important to the journey of learning to live in these super sensitive bodies! One of my first backers on Kickstarter wrote sharing her best friend and her SPD struggles and they call it “fragile girl syndrome”.
I like the emphasis on warming the hands and feet. I’m curious, is there a cure for Sensory Processing Disorder?
Liz: No, sadly, there is not a cure and no meds. When I was first diagnosed in 2015, I only found ONE book for adults with SPD – Too Loud, Too Bright, Too Fast, Too Tight, by Sharon Heller, Ph.D. This book was incredibly helpful, but my doctor and therapist were absolutely necessary too! At that time, all the rest of the resources I could find were for children.
Fortunately, my therapist fully understood SPD, and she helped me understand my triggers and really helped me “CLAIM MY LIFE”! Now eight years later, there still aren’t many resources for Adults with SPD. This is why my team and I scoured the internet to find the best resources for Adults that are thinking, ‘I think this might be ME!’ My tab on my website, What is SPD? Is a pretty comprehensive resource for Adult with SPD.
Thankfully now you can find support sessions through a few resources for adults that might have a subject like “tactile” or “smells” where all the participants with struggle that specific issue, come together to share their troubles and find solutions that have worked for them. There are a pair of occupational therapist, Carrie Sardina and Sarah Norris that have these kinds of session. They call themselves the “Sensory Nerds”. They also have individual coaching services.
Until that period of my life, trauma and extremely unsupportive people was all I knew. I have found that when I have met other adults with SPD, this pattern is fairly common — this deep history of trauma to accompany their sensory triggers.
I have so many vivid memories where I tried to communicate (as a child) that I was struggling and the extreme lack of support for any of it. Plus, even though I do so many things to try to catch triggers before they happen, I can feel how some of my senses are progressively getting worse through the decades!
It took a lot of deep work to get to where I am today, but it’s not to say that I don’t struggle every single day. Just knowing how my body/nervous system works and being willing to accept myself as I am, is much better than things just happening to me that lead to not being able to function!
Christy: True! Why do you think a lot of people still don’t know about SPD?
Liz: I think that whole pattern of “just get over it” is so common! Lack of compassion compounds struggles. When people feel so judged, it’s hard to even admit it to yourself, let alone a loved one or doctor.
With my 45-year history of headaches, I had been to every doctor and practitioner of healing that you can imagine! I told them about the struggles with headache every time, not that light, touch, smell, sounds tastes were very difficult. They tried to help with that, but not SPD, because I honestly thought I was just flawed in so many ways, even embarrassed to tell them, even if I could find the words.
Fending off the sensory overwhelm helps the headaches not get worse, but even this diagnosis, and the hundred little things I do to get ahead of it DAILY, I’m still in pain every single day. The people that I have connected with that have also have severe SPD have a very similar experience of feeling embarrassed by their struggles.
This is why it IS good that they are learning about it for children so they can live their lives and grow up knowing that this is how their body works. This is also why my bigger vision for my company is to SHINE A LIGHT ON SPD — especially for other adults like me that have struggled their whole life!
I want ALL people can learn about themselves and start with checking in with their nervous systems. In that space, I think loved ones have a better chance of being kind and supportive! A supportive environment is critical to be able to make necessary changes to feel better and LIVE BETTER!
Christy: What is your hope for those who use the calming blankets?
Liz: I just want everyone to wrap themselves up and NOTICE how their nervous system FEELS (before, during, and after). If your CozyThrow💤 works for you (beyond warmth), use it to find your center.
I believe that in these past few years, the world has gone a bit crazier. Between COVID, climate change, racial unrest, crazy extreme politics, who doesn’t NEED to have a place or method to feel safe, warm, and centered?
Recently someone called it an “Adult Swaddle” (and of course a Toddler Swaddle too, even for them, it’s been some time since they had that safe sensation!) I absolutely LOVE this! But it’s a swaddle that you have complete choice about. For me, I have fears of being tightly constrained, unable to move. The ability to get out in 3 seconds, alleviates that fear and allows me to feel safe all bundled up. Once people feel the difference in their nervous system, then we have choice! In that space, there’s room to grow and be better — to each other and to ourselves!
For more insights to Adults with SPD, check out our "What is SPD" tab on my website. For more about my journey finding ways to live in this challenging body, your can find that on the "Liz's Story" tab.