Looking back at 2019, I received dozens of questions on the topics I write about. And while I am not a medical professional, I’ve been dealing with my disorders, specifically sensory processing disorder (SPD), for a few decades, which has allowed me to understand all the complexities that having a neurological disorder brings.
So while you should always consult your team of experts when it comes to dealing with your own mental health, here are the top questions I received and my responses to them. In hopes that some of the conversations I’ve been blessed to have will help you or a loved one heal.
In order to summarize certain topics and to protect the privacy of the specific questions asked to me, I’ve paraphrased some questions and excluded names. I’ve also made some minor modifications for clarity.
You mentioned that perhaps when I get uncomfortable, or have sensory overload, I tend to disassociate with my body. It’s almost like my soul is not aligned with my body in the moment or something.
Response to #1:
Yes, in my experience, it is your body connecting to your soul, so you’re right about that! [I consider dissociation to be leaving your body.] For me medication never helped either (with the exception of medical marijuana which I use every day) and meditating alone didn’t help because it doesn’t have to do with the body.
I’ve learned that you have to be present in your body in order for your soul to connect to your body and the only way you can do that is to regulate your nervous system by: exercising, using a weighted blanket, smelling essential oils, listening to music, etc. Or what is known as a sensory diet.
There are literally thousands of things you can do throughout the day to help regulate your nervous system. That’s why I highly recommend that book [Too Loud, Too Bright, Too Fast, Too Tight by Sharon Heller, Ph.D.] because it will explain each part of your nervous system and how to help regulate your body. And if you can, start to see an occupational therapist. I’d read the book first, though, because then you can tell the occupational therapist the specific things you need to work on. Like any doctor, we usually have to tell them what’s going on, lol [no offense, doctors].
I know this is really hard, but your intuition brought you this far, so I have a feeling you will do great once you start to learn about how to regulate your nervous system. And keep meditating, because that’s part of it too.
How did you find a OT that works with adults? I have sensory processing disorder, OCD and ADD. I struggle so much to regulate myself.
I’m doing a lot better then I did before but I would love to hear how you found a OT and were able to afford it. Was it covered by your insurance?
Response to #2:
I am so sorry to hear that you share many of my struggles. Have you read Sharon Heller’s, Too Loud, Too Bright, Too Fast, Too Tight? That was my first step in learning to regulate myself. Dr. Heller also discusses how to create a sensory diet, which should be helpful before you find an OT to work with. In the meantime, don’t hesitate to ask me questions as they arise.
It took me a while to find an OT who would work with me as an adult, so I feel your frustration. I had to have an MD referral, so my first suggestion would be to go to your primary care doctor to see if he/she/they will refer you to an OT. If that doesn’t work, you may have to try a few different doctors. Or, if you see a psychiatrist or psychologist, maybe they know of someone who could refer you. My best advice is to just start asking around.
My OT uses, “disorder of the central nervous system, unspecified,” code G969, for insurance, and yes, my insurance covers it, so hopefully yours will too!
I wish you the best of luck, and I hope you feel better very soon.
I was very intrigued when, in your tips section, you talked about not having your back turned to others in a restaurant, but instead having a wall behind you. I literally cannot cope with sitting in a restaurant unless I am against a wall. How does this related to SPD?
Response to #3:
In regard to sitting with your back to people, for me, I think it has to do with a few things. First, I think it affects the proprioceptive sense, relating to where your body is in space. So if someone is behind you, you may sense the movement and be stimulated by it. If you are overwhelmed with all the noises and smells and movements in a public space, you could be experiencing sensory overload, which could be making you even more sensitive to movement. I also have PTSD, which is another reason having people behind me is triggering; because I’m in a constant fight-or-flight response, something or someone moving behind me feels life-threatening. I’m not sure if that would be true for you, but hopefully my feedback is helpful.
Feel free to email me if anything else comes up you wish to discuss. I know how hard this is, but it’s been a little over three years since I found out, and, through a having a sensory diet and seeing an occupational therapist, I feel the best I’ve ever felt, so know it is possible for you to feel better too 🙂
I hope you find many ways to help you and your nervous system feel better soon!
What job do you do? My office is a complete sensory overload…so I’m always curious [how] people who struggle to regulate [themselves] find careers.
I just read your new article [on neruodiversity and regulation] which I loved and made me hesitant to reach out to you again as I know it’s overwhelming — no need to respond I just wanted to tell you I watched your moth story video and I have never found someone who writes and speaks to my experience with processing issues so much. You have an amazing gift and have helped me feel less alone. I love your style in general. Most people who write about sensory processing disorder overwhelm me more lol but you are the only one who I read and it’s so clear and not overwhelming. God Bless you.
Response to #4:
Thank you so much for your kind words! I can’t tell you how much it means to me to hear I speak to your experiences — you really couldn’t have given me a more meaningful compliment. I know what it’s like to feel alone with all of the crazy things we go through, and I am so happy I helped you know that you’re not. I am confident that all of us who deal with sensory difficulties can help each other, and that no one knows better than us. Please let me know when you find new ways to help yourself and always know that I’m here rooting you on 🙂
I am happy to hear my suggestions about having a sensory diet helped! I know it can be overwhelming to start (and difficult to have a change in your current routine), but for me, everything changed for the better once I got into a routine with my sensory routine.
I left many jobs because of the sensory overload I would face, so I feel you on that. Have you inquired with your boss about working remotely a few days a week? That’s what always helped me cope. May I ask what field you’re in? I teach career preparation, so I may be able to offer a few suggestions if you’re looking for a career change.
I currently teach at a university, and I recently shared my struggles with my boss (as you saw in my Moth Story), so I am now teaching fully online. I find that being in my own environment the majority of the time is what helps me cope best.
Thank you again for reaching out and for all of your kind words. I hope you find a good sensory diet for yourself soon!
I just read your link about neurodiversity and fight-or-flight [response] and you described my daughter! She will be 8 in June and this is her everyday. I work with kids with special needs and I am very familiar with SPD. We have support of psych and an OT and her pediatrician is trying stimulant meds to see if it helps with her academics. [My questions are:]
- Did you struggle in school? (reading/writing?)
- Did you (do you) take meds?
- Did you see someone separate for cranio [craniosacral therapy]?
Our OT tried a sensory diet but my daughter went into flight-or-fight when we presented it. Now we just leave items accessible and she has to decide when to use them.
I became excited when I read your article as I know she will be a successful and happy person and you are proof! Some of the dark, rage moments make that hard to see. I would love to connect with you to learn more.
Response to #5:
Thank you for reading! I am happy to share my experiences in hopes they will help your daughter. I apologize it took me a few days to get back to you. I wanted to make sure I had time to provide adequate responses:
- Reading is difficult for me sometimes, especially if there are sensory distractions, and it got worse as I got older and had more complex things to read in school. Reading and writing (handwriting, not typing) are difficult for me if I’m unregulated, but moving beforehand helps, which is something last week’s blog addresses.
- I tried medication several times in my life, but it never worked for any extended period of time. And it always messed with my digestion, caused internal bleeding, etc. For the last few years, I’ve been using medical marijuana (which I realize is not suitable for a child), and I just started using CBD, which might be something worth talking to her doctor about. There’s an article on the benefits of CBD for the nervous system in this week’s The New York Times Magazine.
- My OT does craniosacral therapy with me.
I’m sorry to hear your daughter went into fight-or-flight when presented with a sensory diet. My guess is that it was because it’s change or that something about it was triggering for her. I’m sure you did this, but if you ask her what it was about it she didn’t like, that could help you modify it. Also, maybe try not using the term sensory diet, but incorporating it into something she already enjoys. For example, if she likes playing video games, maybe have her sit on an exercise ball while playing and show her some fun ways to bounce around. I jump on my mini trampoline while watching TV. Basically, if you can find ways to make it a game or rewarding and part of her routine, there might be a better chance she will try it.
Something else possibly worth trying could be making her sensory diet into an art project. I created a picture book when I first started my sensory diet. I drew pictures of drinking something hot or something cold, jumping on my trampoline, doing push-ups, etc. Once or twice an hour, I’d flip through and do whatever sensory task I landed on. You could also try making it into a game or having a reward system.
I find routine extremely important to adhering to my sensory needs: I get up, use my weighted blanket, drink something hot and something cold, eat, exercise, listen to music, etc. Doing the same things at the same time every day should also help her.
I’m happy to hear that reading my post helped you feel hopeful about your daughter! Please let her know that she is not alone and that her struggles are real. Help her to see her gifts and encourage her to do acts of self-care every day. Here is one of my blogs discussing self-care, which might help.
I hope my response helps! Good luck to both you and your daughter!
My niece is 13 and has SPD. She has no friends and sits alone at lunch. Other kids find her weird as she laughs too loudly and can’t gauge reactions very well. She is the most nervous I’ve ever seen her as she is about to start High School. She’s always been a happy kid, but this approaching milestone has her terrified. Is there any advice you can give her (and I can relay to her) for this? It’s a new school with all new kids. Thank you so much as I read your blog and do find it inspirational and it helps me relate to her better.
Response to #6:
In regard to your niece, there is so much to say. First, she is a sensory rock star, so anything you can point out to boost her self esteem will be helpful especially in regard to her senses. For example, I’m sure she takes in things from her environment that others don’t, which is partially why she’s overstimulated and has a difficult time regulating, but also what makes her awesome. Her sensory difficulties are her superpowers, so maybe knowing she has a superpower will help her feel confident and approach new kids to engage with. And since it’s a new school with all new kids (something I experienced too), she can be whomever she wants to be and doesn’t have to let any of the things that upset her follow her to this new school. I know this might sound cheesy, but maybe do a ceremony with her where she writes down all of the things that upset her at her old school and then rip them up — something that will signify for her that it’s over and she doesn’t have to carry the things that upset her into her new experience.
In high school, I would encourage her to get involved in groups and clubs that are associated with things she likes. She will meet people and build confidence that way. Also, her high school might even have support groups for kids with sensory difficulties or for kids who are neurodivergent, so looking into that before she even starts might be a good idea too. I used to eat lunch in one of my teacher’s classrooms, so I completely emphasize with her on that. Eating in front of others is still difficult for me, so maybe that has something to do with it for her too? In high school, I also started seeing the counselor so I had somewhere to go if my day got too hard. So that might be an option for her too.
At school, she could wear earplugs if noises overwhelm her, drink hot and cold beverages and eat crunchy snacks throughout the day. Also, if regulating her sense of smell is difficult, she could apply essential oils intermittently to help herself regulate. Seeing an occupational therapist to give her a sensory diet would be a good idea since I don’t want to suggest something that would counteract what she needs since each of us have such different sensory needs.
There are also things she can do before leaving for school each day and when she comes home to help regulate her senses. Like using a weighted blanket, eating enough protein and exercising/moving. Keeping a routine will help her stay regulated as she will know what to expect next as well as getting enough sleep and having enough downtime, specifically alone. She should have things at home that help her recharge when she gets home like a mini trampoline or something active she enjoys doing on her own. Also, consider encouraging her to keep a journal of all of the sensory triggers she experiences (as well as her thoughts connected to them). She might find that she can regulate herself better if she knows she is experiencing sensory issues before they overload her.
I would be happy to answer any questions at anytime, even if she wants to contact me directly. I went through some of the same things, and I’d be happy to talk to her. High school is already so hard, I feel for her.
I hope this wasn’t too much. Please let me know if there’s anything else I could help with, and thanks again for reaching out 🙂
So there are the best questions on sensory processing disorder I received in 2019! Thank you to all of you who read my writing. And to those of you who contact me to discuss the abundance that is sensory processing disorder.
Having lived with SPD for most of my life, I’ve always felt incredibly alone. Like no one understood me. Like I was too much for people to handle. Like I was a burden. Starting to write about my struggles and having people connect to me and share their experiences has opened up a world that I otherwise wouldn’t have known. It’s made me feel connected. Understood. And like I am no longer alone.
So thank you to those of you who read my writing. You have enhanced my life in ways that words cannot describe. I sincerely thank you. From the bottom of my soul.
May you and your loved ones find sensory regulation in 2020 and fully connect your mind, body and soul.
Light and Love,