Posts Tagged ‘sensory processing disorder’

From frustration to acceptance

The experience of being me is challenging sometimes.

It’s challenging after spending a weekend reeling from sensory input and having to slow way down.

It’s experiencing intense overwhelm and heaviness after trying a healing technique — one that others are praising and saying how good they feel afterwards and how much it benefits them.  I try it, and it feels like so much. Too much?

It’s my thoughts that “other people aren’t experiencing this,” and “Why is this happening again?”

And perhaps many people are not, maybe not specifically sensory processing issues or other sensitivities, but, as my Aikido/Tai Chi instructor reminded me on Tuesday night, everyone has limitations of some sort that they have to honor, and also reach their “too much” point at times. He said that being at the edge often means learning, and going over can lead to burnout or injuries.

I sometimes really want things to be easier, simpler, more relaxing for me. Not to get exhausted, even from doing things that I want to do. Not finding it challenging to be in my body at times and stay anywhere close to grounded.

And then, there’s returning to acceptance. There’s softening towards myself. There’s having a vulnerable moment after Aikido that opens up a conversation and other people sharing vulnerabilities.

 I realize that often when I feel overloaded and scattered, I often interpret it as I’ve done something “wrong.” And maybe whatever I did was too much for my system at that particular moment, but it may not need that strong of a label. My nervous system is giving me a signal that I need to slow down, back off. That requires honoring myself, pausing, and resting. It does not require a label or a value judgment. Once in a more grounded place, I can have more perspective about that experience and think about what to consider in the future regarding that activity. Experimenting and finding that that activity was too much at that moment doesn’t require chastising myself for wanting to see what it would be like. It may be an opportunity to give myself space and to learn from that experience.

I have done so much work the past few years around creating a life that more fully honors my sensitivities and limitations. I have so much more respect for myself and what I need. I still have moments where I get frustrated, where I want to do more, be more, and where I want to push through.  I also have more moments of acceptance, of giving myself space to be how, where, and who I am. I’m taking this moment to honor and acknowledge all of this.

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Marching in spirit

womens-march-on-washington

I love that there are going to be women’s marches all over the country (and world!) this  Saturday, January 21. I definitely believe in the issues they are be marching for. I stand in solidarity with them.

And…I’m also choosing not to go to the one in my city. This isn’t a political decision, it’s a personal one. The probable sensory and energetic cost of going to an event like this is higher than the rewards of going. These kinds of events tend to highly-stimulating: There are many people going, it may be challenging to leave, there may be unexpected situations, noises, etc.

There is part of me that is wistful: I would like to go.

There is part of me that says I should go, should be doing more in terms of activism in general. However, a lot of this”more” includes things that may stress out my nervous system and throw me out of whack for an unknown amount of time. Yes, I am being cautious and discerning. I am also trying to be realistic and compassionate with myself.

I’m brainstorming other ways that I can help: donate a small amount to an organization I support, look for a volunteer opportunities, keep my eyes out for activities that may be more supportive. While I sign online petitions on a regular basis, I don’t know how much impact that has; I also acknowledge that it is something.

For those of you out there who are marching this Saturday, I am marching with you in spirit.

The past 2+ years: what I’ve gained

I came back to my hometown in June 2014. Now, October 2016, I am preparing to move to a new city and state to join my love. I wanted to take some time to acknowledge what I’ve gained over the past two years.

DBT (Dialectical Behavioral Therapy)

Then: When I came back to my hometown, I was convinced that I had no options and my life was over. I had heard of DBT because a close friend had gone through a program, but I had never considered it for myself. As my mom and I were packing for me to leave San Diego, she put in a call to a DBT program, and I got put on a waiting list. I was extremely nervous about starting with a new therapist, hesitant to trust, and felt like my connection to life and wanting to live was shaky. I started therapy in August, and group in October.

Now:  I had my final session with my therapist last Thursday. I felt a sense of completion, of accomplishment. I don’t think I need therapy, at least for the time being. I have skills, resources, and a strong support system. I have faith in my life and myself and hope for the future. I went through fourteen months of skills group, and two years of individual therapy. I also gained friends from group, women who I connect with and love. We’re different in many ways, and we’ve bonded over our shared experiences. Sometimes, I find myself using DBT skills automatically. The skills help me navigate every day, through interpersonal situations, regulating my emotions, with self-acceptance, and more. I am so grateful that I landed here and did the program – it was a huge commitment, and I worked hard and have come so far.

Nia

Then:  One of my dad’s friends told him about Nia and thought I might enjoy classes. I’d heard of it, and was curious. I took my first class while I was visiting my dad in June of 2014, and absolutely loved it. When I decided to return, I knew that Nia classes would become an essential part of my weekly routine. In a time where my depression made it challenging to get up and go in the morning, I got up three times a week and took myself there. There, I found laughter and joy and freedom of movement. The sense of heaviness that pervaded so much of my life lifted for a few hours afterward. That thread of joy and relief from anxiety helped me slowly tap into those experiences in other areas of my life.

Now:  My Nia practice has extended beyond my three times a week at the local studio, and I now practice routines at home. I have a White Belt, and have been teaching Nia for roughly six months (subbing, then consistently for two months). I’ve met some wonderful people through Nia and have gained a community. I truly love dancing, and teaching is a joy. And I will continue – on my own, and with other teachers. My hope is to start teaching a regular class by the new year. Nia has challenged me to grow, to become more in touch with my body, to integrate music and memory and movement to create an incredible whole. It’s also a great tool for sensory integration and emotional regulation. When I do Nia, I feel like I’m at home – with myself, in my body, and with those around me.

Occupational Therapy

Then: My DBT therapist suspected I had sensory issues, and referred me to an occupational therapist. At first, I was stubborn and didn’t take up her suggestion – I was concerned that doing sensory integration work would make me less sensitive overall.  Finally, I agreed to at least go for an assessment. I filled out the intake/assessment form with trepidation, wondering what my answers might mean. The woman who would become my regular OT looked over my answers and explained: I was, at the very least, tactile defensive. As we talked, more details came out, how exhausted I could get, how overwhelmed I got in busy and crowded situations. “Do you think you could help me?” I asked. “I think I can,” she replied. Through my first months of occupational therapy, I was amazed – and a bit horrified – as I became more and more aware of how strongly sensory stimuli affected me. It explained so much, from my energy crashes to times when I would shut or melt down. And slowly, the regular exercises – from the sensory diet to the regular brushing – she gave me to do began to help.

Now:  I have learned so much in the past year and a half. I have found a sensory adult community online, and I know I am not alone in being an adult with a delayed diagnosis of sensory processing disorder. I am generally less tactile defensive, except when I’m under a lot of stress – and then it’s good for me to resume brushing regularly. I’ve completed two rounds of the sensory motor iLS listening program. While I’m still sensitive to loud sounds/noises, I’m a little less so, I can filter better when there are multiple conversations going on around me.  I’ve learned about neonatal reflexes and am doing regular movement exercises to help integrate them; as a result, I startle less easily. I have so much more knowledge and awareness of my sensory issues, and I approach my life differently and respect my limits much more. I am much more understanding and accommodating with myself, and I have much more self-acceptance. Regarding my sensitivity: While I am less reactive overall, I believe that doing sensory integration work has actually enhanced my sensitivity. Things are less overwhelming overall, and I’m able to better focus on one thing at a time and sense in. Initially, I was afraid that doing sensory integration work would numb my senses, but instead I would say that it has made how I perceive things more accurate and more nuanced.

Vision Therapy

Then:  Around September of last year, after several months of occupational therapy, I was describing my visual experiences with driving at night, how the lights seemed overpoweringly bright. My OT, who also does vision therapy, decided to try a visual exercise with me, one that left me disoriented and dizzy. She referred me to the developmental optometrist for an evaluation for binocular vision – how well my eyes work together. It turned out that not only did my eyes not work together well, but I also had poor depth perception. The news unhinged me a bit, and it explained so much – why learning to drive and driving in general had been so challenging and overwhelming for me, why crowded situations and fluorescent lights bothered me so much, and much more. I got on the waitlist for vision therapy with my occupational therapist, and started in January 2016.

Now:  I completed my vision therapy last week, and had another evaluation with the developmental optometrist on Monday. I now have greatly improved depth perception, and it’s now almost relaxing to see things around me in so much detail and dimension. Driving at night is so much easier; the lights no longer seem so bright and everything seems so much clearer and well-defined. I have a greater sense of how my eyes are moving, and my eyes generally feel more relaxed and less strained. I’m still having difficulty with divergence – comfortably bringing both eyes out to see at a distance – and I maintenence exercises that I’ll do several times a week for the next while. My OT and optometrist say that vision generally keeps improving post-program as everything continues to integrate. I’ll have another followup appointment during my next visit (likely in the spring or late winter) to see where I’m at.

Community

Then: I felt betrayed by the community that I had been part of, the community I left when I decided to leave San Diego. It was a community where I had once felt such great love and belonging, and now felt out of place and didn’t think anyone understood what was going on with me. When I came back to my hometown, I was distrustful, and I was hesitant to get involved in community-oriented activities, especially ones that resembled ones in my past. But I started to realize: I felt so welcome in my Nia classes, and I started to connect with the other people there. I looked forward to my weekly DBT group and seeing everyone there. It may not have looked like it had in the past, but I was making new friends and being in community. When I took my Nia White Belt in July of last year, I had a moment where I started to laugh and cry at the same time, “I am self-healing from an acutely painful experience in community,” I told the group that morning. “And I feel so welcome here.”

Now:  I’m going to miss all the people I’ve grown to know and love, and miss seeing them regularly. I will keep in touch as best as I can and know that I have community here. I still am connected to a few people in the community I left. I am connected to the local and greater Nia community. I love and value the people in my life. I am open to creating and building community elsewhere, too – in my own way, and in my own time.

Wedding countdown: Hair and makeup trial

hair-flowers

Sample flowers for my wedding hair trial appointment: white roses, baby’s breath, and delphinium

My wedding hair trial involves a lot of pulling, pinning, some curling. My hair stylist tells me to wash my hair the day before my wedding, because second day hair holds styles better. My curls straighten out and she uses the iron to convince them back in. I giggle, quite a bit – I’ve never had this done before. I didn’t think I’d want my hair in an updo for my wedding until I tried on my dress; the dress, with its ornate embroidery along the neckline, dictated the hairstyle. My stylist parts my hair to the side, braids strands, and then adds the flowers,  creating something similar to an image I’d found on Pinterest. For awhile, it looks odd, and I have difficulty not pushing my hair back behind my ear, as it’s hanging down and tickling the side of my face. In the end, though, she pins that piece back, and the look falls into place. It’s asymmetrical, it’s beautiful, and it suits me.

She asks if she can clean up my eyebrows, just a little in the center and underneath. Although I rarely do this, and I agree. She waxes them; the process stings and I cringe and wince. I know my pain threshold is low, and that my reaction is strong.

We run out of time, and have to postpone the makeup part. I won’t have the full picture until my wedding day. I keep my hair up for the rest of the day, and run errands at Walgreen’s and a hardware store. There’s something exciting about doing daily activities with my hair in an updo with flowers.

My make-up trial is more touch-based than the hair; there’s so much direct contact with my skin.

“You have sensory issues, right?” she asks. I had mentioned that I was tactile defensive during my hair trial, but I hadn’t used those terms. It turns out her nephew has Sensory Processing Disorder and her eldest son has Asperger’s. She also has other clients (mostly children) with sensory issues. I’ve been going to her for haircuts for two years and didn’t know this, although I had the sense she was excellent at reading body language. Since my initial process of choosing her was based on the creative name of the salon and reading her short bio on a website, I’m so glad that I ended up with her.

She explains everything she’s doing, and tells me to give her feedback – if something feels uncomfortable, if I need a break. Firmer touches feel better than softer or lighter ones, I tell her. I’m grateful I don’t go through the hair and makeup process regularly, even if I like the end result. It is such a tactile experience. “I’m bringing my weighted lap pad next time,” I tell her. I might even bring my weighted blanket, just in case.

After the appointment, I look at myself in the mirror. I’m still in there, just more accented, styled, glamorous. I love how my eyes stand out. I play with toning some of it down until I find the right balance.

Now, I close my eyes and imagine everything together: my hair up, makeup done, wearing my dress, bouquet in hand. Ready for my entrance.

An ideal sensory-friendly community

Someone asked recently on the Facebook SPD Adult Support Group: What would be your ideal sensory-friendly community?

My response:

My sensory friendly community would be a quiet place in the mountains. There would be hammocks in the trees and several outdoor trampolines. There would be a sensory tools gym that includes trampolines, cushions, various toys, and also space to move. There would be private rooms in the gym for people who wanted space to move by themselves or in a small group. There would be a large pool and several hot tubs. There would be a community garden, set off to the side, that would have flowers, herbs, and vegetables, and next to it, a fruit tree orchard. Any requests for quiet would be honored, there would be specific spaces for music to be played or heard at a reasonable volume (and would be sound-proofed so the sound wouldn’t carry beyond the room), and otherwise people would wear headphones. There would be a quiet coffeehouse, too. And a grocery store nearby with decent, non-fluorescent lighting.

I could definitely continue to elaborate with this description. What would your ideal community be like, sensory-friendly or otherwise?

On coping and compensating.

Coping mechanisms and ways of compensating are tricky.

On one hand, they are protective.  For me, they have helped me manage my life, get through school, overcome obstacles, etc.

On the other hand, coping mechanisns can become shaky in the face of mental and physical health issues, stress, and aging.  They can also hide the truth of what’s going on – from me and from others.

In vision therapy, I’m discovering that I have a lot of ways of compensating.  If I lose focus or my place, I can find it again.  I help myself while driving at night by talking myself through it.  My brain prevents me from seeing double.  However, that doesn’t change the fact my eyes don’t work together well. My sensory and vision issues likely contributed to an overall sense of fatigue.
In the midst of my sensory processing issues, I worked really hard, harder than I knew at the time.  I learned to adapt – or at least make it look like I adapted (in which case, I even had myself fooled).
 I’ve realized that as a kid and young adult, I would come home at the end of the days and have meltdowns in front of my loved ones.  I once thought they were tantrums (fortunately, my parents didn’t see them that way).  Many things were likely overwhelming throughout the day but it’s like I put my responses on pause and reacted later.  So many people in the public sphere thought I was doing/feeling better than I really was.  I pushed through a lot of challenges, and sometimes went past my own limits.   At times, I managed my energy, picking and choosing what activities I did. In a lot of ways, I was like a full storage unit:  I sometimes created more space through recharging; at other times, I couldn’t manage the amount and it overflowed.
So, I am grateful for my former coping mechanisms.  I don’t know what I would have done or where I would be without them. They kept me moving and living.  I’m realizing now how much their protective layer hid from me.  And perhaps I wasn’t ready to deal with those aspects of myself yet.
I am also grateful for losing some of my ability to cope and compensate because it allowed me to see more of what was actually happening.  Yes, I felt disoriented and vulnerable, sometimes desperate and erratic.  Yes, I went through an incredibly challenging time – which included major surgery, depression, and transitions – to get to where I am now. But would I take back knowing about my SPD?  No way. Also, going through the DBT program helped me learn how to regulate my emotions and be more accepting of where I am at, and that has been incredibly valuable in doing sensory integration work.  I’m able to be like, “I feel disregulated,” and sometimes that acknowledgement is the best thing I can do in the moment.
Lately, I’ve often asked myself the question:  “Are things getting worse, or am I just more aware of them?”  I think it’s the latter.  Overall, I have fewer meltdowns.  I know what’s happening when I become overstimulated and can making decisions and act accordingly.  I am doing things I love in the midst of a lot of changes. I am making improvements, and I am more aware.  I have learned new ways of coping that help me stay more present.  I definitely like that better.

Friday link roundup 1/29

Study of Holocaust survivors indicates that trauma can be passed on genetically.

Anne Frank’s stepsister talks about the current refugee crisis.

From last year:  a mother’s letter to her transgender son, Jacob, on his 5th birthday.

On dance and neuroplasticity.

A family incorporates movement into all aspects of their lives by removing or modifying  furniture, setting up a jungle gym in the living room, and more.

An 11 year old girl from New Jersey decided she was sick of reading stories about “white boys and dogs.”  She is now holding a book drive to get 1000 books with black female protagonists by February 1.

Lego creates a toy figure in a wheelchair.

Michael Moore’s letter on ways to help the people of Flint, Michigan.

I definitely would have appreciated this as a teenager:  the first ever BroadwayCon.

A documentary film about an eagle huntress from Mongolia is making waves at the Sundance Film Festival.

New research study finds brain’s wiring is connected to Sensory Processing Disorder.

An excellent article on what “neurotypical” means – and what it doesn’t.