Dan's Story - Part II
Continued from Part I.
My Life with SPD - The Road to Recovery
As soon as my search had landed me on a web page that indicated the most common symptoms and explained the basic idea behind the Sensory Processing Disorder diagnosis, I was simply blown away at how much the information I found there matched my story. I was finding there, right on the page, a list of things I had always wondered about, things I had been concerned about for so long. These were things that had affected me tremendously, and now I was finally getting the answers, finally finding these things listed somewhere. At last, I was not alone!
Now that I had seen this list and knew that I was on to something, I decided I was way too depressed, lonely, and desperate to let things go any further. I had nearly completely given up on my life; I needed to find a way out. 'This,' I thought, 'may just be my answer.' At that point, I figured I needed to press on, needed to go further. My life was worth it to me, and I had to recover from this and keep on moving.
Road to Recovery: Researching It
The first step to recovery was to learn about what it was I was actually recovering from, and just why I needed to recover in the first place. This meant one thing, and it was luckily about the only thing I wanted to do at this point, in my emotionally fragile state: research! I kept reading, and kept searching to learn as much as I could about Sensory Processing Disorder.
I pulled out a book from the library about SPD, "The Out-of-Sync Child" by Carol Kranowitz. It was an amazing read, and it helped me to understand myself in ways I never would have dreamed possible. I soon purchased the book, and pulled out another book, entitled "Too Loud Too Bright Too Fast Too Tight" by Sharon Heller, which was the only book available on the subject of adult SPD. The information I got from these books, as well as my later reads ("Sensational Kids" by Dr. Lucy Miller and "Raising a Sensory Smart Child" by Nancy Peske and Lindsey Biel), helped me to finally be able to figure out why I was the way that I had been all my life.
Without a strong understanding of what SPD was, there was no way I would be able to do what I did next - something that changed my life for good. I began to think differently about the way I was, to frame my difficulties in a whole new way. I began to reframe the whole way I saw myself, and my issues.
Road to Recovery: Reframing My Thinking
I am not a lazy, failure of a person. I am not too picky, too panicky, too afraid; I have Sensory Processing Disorder. It was an amazing shift in how i thought about myself to see that all these things that I thought were 'just me' and were character flaws were actually just symptoms of an underlying neurological condition. Suddenly, it was as though a massive weight had been lifted from my shoulders. Almost immediately, I came to figure why I was the way I was, and to accept myself, once and for all.
SPD is not a shortcoming. It is not a disease either. It is just a condition, a physiological condition. For me, it arguably started before I was born, meaning that my brain, in regards to my senses, maybe hasn't ever been developing quite normally. Wow, so this wasn't my fault! I wasn't a perpetrator, I was a victim. After years of seeing myself as the one that was the problem, understanding that I had a neurological condition, a literal reason to be the way that I was, allowed me to finally start to accept and even love myself.
My pickiness and fears were mostly explained by over-responsiveness, otherwise known as sensory defensiveness. My apparent laziness and my slow or confused responses were caused by things sensory under-responsiveness and sensory discrimination issues. My constant chewing on things and my inability to stay still were actually just sensory seeking. My clumsiness and my chronically poor posture weren't just me being out of shape or out of practice, it was me suffering from Sensory Based Motor Disorder. This is all SPD, all a part of what I was diagnosed with as a child. This wasn't just me, and it was by no fault of my own.
What's more, now that I knew why I did things the way I was doing them, I became able to learn how to make a positive change in my life. I now had answers, and with answers came suggestions for how to cope, and even directions for how to seek treatment through Occupational Therapy, which I soon started working on.
Road to Recovery: Grieving the Past
Learning about SPD was so amazingly beneficial to me, but with it came the resurgence of a great deal of pain. I became frustrated; I went through the five steps of grief: denial, anger, bargaining, depression, and acceptance.
Denial seemed to be over pretty quickly - I immediately knew that I had this disorder, and that this was the answer I had always been looking for... or was it? What I came to find out, is that I definitely did go through a denial stage. It wasn't that I didn't think I had SPD, it's that I questioned both how severly effected I was (could I go on without seeking assistance?) and that it was truly me who had it. A big part of me didn't want to be the one who was stuck in the first-hand perspective here. I really wanted not to believe it, though I knew it was true.
Anger came as well, as it was unavoidable. I'd suffered a good deal in my life, and yes, I wss irritated to know about it, and of all the times where people had been so hard on me. I was angry at many people, including my old friends who had left me, my family, the schools I had been to, and the health care system that has caused me a number of issues over the years. The hardest one to deal with was the anger that I felt toward my parents, for all the years they had told me to basically just 'deal with it' when I was really having a hard time and couldn't. I also realized though, that our life had been incredibly hectic, and that they truly did love me and were just unable to do what they wanted to do for me at that time.
Bargaining wasn't easily distinguished, either. I did do a little bit though. I really wished I didn't have to have SPD, that I could have some other struggle, or not have to deal with it at all. I felt as though I was a good person, and that I shouldn't have to have these problems. Of course, these problems happen to five percent of the population, so really, why not me? I'd even gotten pretty good at learning how to deal with a lot of stuff. I had become a bit of a pro, and now I could get even better at it.
Depression was the largest of the stages in my mind, the hardest one for me. I really went through all these stages together, so it was kind of a blur, but the overall effect left me in a sobbing heap on the floor a good number of times. I cried for hours on end many times. I felt horrible, gut clenching pain, almost unbearable. All the years, all the isolation, all the loneliness and hurt feelings came swarming back to me, and there was little defense. I ended up being diagnosed with major depression, and started treatment on anti-depressants.
Acceptance, well, that came with time as it always does. As soon as i first found SPD, I knew it fit me, and that I had it, but accepting it is something else entirely. Accepting that this was the way I would have to live my life, that I would have to work hard to overcome this and get the life that I wanted for myself was critical, and it took a long time to completely accept it and to work with it. When I finally did come to an acceptance over it though, it was amazingly beneficial, in deed.
Road to Recovery: Rewarding Myself
People are often confused what I mean when I say that people should 'reward themselves.' It tends to lead to a few misconceptions. When I first discovered SPD, I was finding a ton of parents writing stories about their children. Some were bleak sounding and they were in need of help, others, however, were written by parents much further along in their journey, and their stories were terrific and hopeful. I read stories about children who were now doing so amazing and fulfilling their dreams and succeeding, flourishing in spite of their SPD diagnosis. As thrilled as I was to see this, it was a tough thing to take.
I really had wanted to succeed in many ways, but I still saw myself as a complete failure. I had originally thought I woudl be a published writer with a book or two on my resume by the time I turned 18, that I would be going to a prestigious school and working toward an equally impressive degree. I had hoped to have friends, to have a girlfriend. Instead, I was a completely isolated 20 year old who had recently given up on his first opportunity to get published earlier in the year, and was going to a community college with little direction on where to go and little hope for the future. I was certainly, in my mind, failing to live up to my potential and my intellectual and social abilities. I was failing to thrive, essentially, something I had also been labeled with as a child. Again, the blame fell back onto me.
That's when I realized the error in my beliefs on this. What I was really doing was reading up on children who had been given the answers and the tools they needed from a much earlier stage in their life. They had a ton of benefits that I never got, and to continue to compare my success to theirs was to continue to be horribly unfair to myself. So, to me, rewarding myself meant that I was going to allow myself to get the full benefits of knowing about SPD and getting treatment now, and not focusing on the years I went with out. Rewarding myself was basically just removing the blame from myself, and not allowing myself to get so down about what really were amazing success stories that filled me with hope, myself.
In short, rewarding yourself just means one thing - make your life livable! Do what you need to do to keep your sanity, and if it's unhealthy, then work on finding a healthier substitute, but only when you are ready to make that switch.
Road to Recovery: Rewiring My Brain
As I was working through much of my emotional troubles, I was seeking out a good occupational therapist (OT), as I knew that was the recommended treatment for SPD. I went in to see my doctor, who refered me to the same place I had gone to OT when I was first diagnosed back in the '80s. When I went in there, they just told me my situation was too severe for their facilities, and they referred me to a private practice therapist who was better suited to handle my case. Yikes, and I had no idea it was so bad.
My first OT session was interesting, and was essentially a thorough evaluation for SPD. It certainly confirmed that I had it, and it came with a number of new ideas for me. I was able to impress my therapist with my knowledge on the topic (especially considering I had only known about it for a couple months at the time), and could even pinpoint what she was checking for in most of the tests, however, she was able to point out a few things I had never noticed before, things that aren't even necessarily written in the books, but that proved to be quite accurate.
After months of OT sessions, once a week, I began to see a number of improvements. I was keeping up a solid routine in my daily life to ensure that I kept a good balance of sensory input, known as following a sensory diet. I was given a number of protocols as well, including the Willbarger protocol for skin brushing and joint compressions, SAMONAS listening therapy, Interactive Metronome, Astronaut Training, and a large number of other protocols. Slowly but surely, I began to do better and better. My symptoms didn't go away completely, but they become much more manageable. Truly, OT was a major change in my life, and it continues to shape my nervous system and help me in my daily life today.
Road to Recovery: Returning to Life
The reason I was so focused on the emotional and psychological elements of discovery before getting to the part where I actually work on getting things better, is that I was an absolute emotional wreck when I first found out. I was in the middle of an emotional/psychological breakdown, and could barely control my own thoughts at that point. Now that I knew what I had to do to get better, and was in a better place to accept that challenge, I went for it. One thing was for sure though, I needed to get a life, one where I had friends and support; one where I had a direction and a path to follow.
In early 2008, I joined a small Yahoo group named SPD Adult SHARE. I lurked around, just reading for about a month before posting to the group. Quickly, I was getting responses from people, coming into contact with people online in a meaningful and supportive way. It was like another world to me, but I loved it! Shortly after becoming active there, I joined it's affiliated parenting site, SID-DSI AlllAboutKids. I was surprised, but they readily embraced me and accepted me, even though I was an adult and not one of the other parents on there.
It was about this time that a couple people (Erin and Bev) started messaging me and chatting with me privately. For the first time, I had literal friends, people who accepted me and were genuinely concerned for my wellbeing. It was amazing, and we soon grew to be quite close. As time went on, I joined several other Yahoo groups, and the three of us, in early August 2008, set up a Yahoo group together named SPD Life, and this organization came to existence for the first time.
In September of 2008, I came into contact with Michelle Morris from SPD Parent SHARE and SPD International, and was invited to become a host manager for the community, to volunteer and help support her with her online duties. I accepted, and soon became a moderator for most of her Yahoo groups. In late December 2008, I launched SPDLife.org, the first site dedicated to adults with SPD.
In the spring of 2009, I had my first article published in an issue of S.I. Focus, the only magazine dedicated to the SPD cause. I also ended up becoming Chief Administrator of online activities for SPD Parent SHARE in 2009, and added SPD Life to the SPD International umbrella. In November of 2009, I started up an outline for my first book on the SPD topic, and redesigned the SPDParentSHARE.com website the following month.
In January of 2010, I was hired to become a member of the writing center at the school I attend. After getting that, I quit my old job at the grocery store after three and a half years of pushing my sensory boundaries over there. I needed to make changes in my life, and continuing to force myself along with the routine at that place was in no way healthy for me. The writing center job, where I get to help people one on one and instruct people in a laid back environment, has been truly amazing for me.
In June of 2010, I launched a brand new forum site and chat room on SPDInternational.org, the home site of the organization. I also set up a blog, My SPD Life blog in late October that year. I am putting the finishing touches in on an Associate's Degree in Internet Professional as a web developer currently.
So, right now? I run several Yahoo groups, three websites, and a forum site with its chat room and host network. I am a published writer who works as a college writing tutor and is also involved in a number of additional projects, too many to list all of them here really. So, I have a direction, and a purpose now. More importantly though, I have friends! I don't have many in real life yet, but I have a whole list of friends online - people who genuinely care about me.
My life has changed tremendously, but I cannot forget where I came from. I will not. I am not dedicated to helping those who are where I was or worse, or better, if you really think you're doing a bit better. Honestly, SPD is never easy, and I am firm on my direction and path to help as many as I can who struggle with this invisible disability.
I thank you for reading my story so far. To find out more and get updates, swing by and set up a free account on SPD International or visit My SPD Life blog. I look forward to continuing my journey with my new friends in the community - all of you. Thank you.