Monday, October 20, 2008

Living with SPD--Erin's Story

This is a guest post from Erin, who is an adult sufferer of SPD. She was gracious enough to tell us her story and how treatment has helped her. Thank you, Erin!

Going back into early childhood I always knew there was something different about me, but I never could put my finger on exactly what it was. As a child I was completely content to spend two or three hours in the pool bobbing up and down, up one end of the pool and back. I didn’t know anybody else who felt compelled to eat erasers, and long past when everyone had learned to sit in their seats I was still tipping mine back. I will never forget the time I took it too far in third grade and there I lay, sprawled on the floor in my chair with the desk and the contents of the desk digging into my stomach looking up at my teacher who was looking down at me with her hands on her hips shaking her finger and saying “I told you that would happen one day Erin and I hope you have learned.” I was mortified, but not enough to quell the urge to tip back my desk, and the next week I tipped it again.

I felt compelled to do these things and though I hated the chastisement and knew that I should be listening to what I was told, I couldn’t stop myself. I was labeled as a behavior problem and treated with disdain. This was a major contributing factor to my low self-esteem and depression starting in 3rd grade when I was around 9 years old.

I was diagnosed with Attention Deficit Hyperactivity Disorder in 3rd grade, and while I still carry the diagnosis, and take medication for it daily, my ADHD is a co morbid disorder my SPD, and only a piece to the puzzle. The difference between ADHD and SPD is when an SPD child gets the input they crave, they feel more modulated and quit seeking it. In ADHD it is more about impulse control and these children tend to do it because they don’t have the restraint to stop. I have pieces of both; lack of impulse control and sensory seeking.

Finally when I was 22 and still hadn’t outgrown completely many of the concerning behaviors someone noticed that there was more going on than the ADHD alone, and I was diagnosed by an OT with SPD. I received 6 weeks of OT with a therapist who had no clue about the nuances in the differences in treating an adult versus a child. Since SPD is considered primarily a childhood disorder many of the OT’s trained for Sensory Integration Therapy do not have the training to adjust the therapy to meet the different neurological systems, sensory needs and preferences of adults. I was dissatisfied because I learned very little about myself or how to deal with SPD, made very little progress in establishing a baseline, and virtually no progress in making and reaching therapy goals. In fact I didn’t even know what my goals should be. I was quite discouraged and disgusted with my treatment and resigned myself to the fact that “this is as good as it gets.”

Then when I was 24 I decided to take a plunge which would change my entire sensory related future. I entered college with the goal of attaining my Bachelor’s as a Registered Nurse. I quickly realized that to be as successful as I had the potential for I would have to seek more treatment for my sensory symptoms in the classroom. With the fluorescent lights, the ticking clocks and my need to keep moving, I could barely focus on what was going on with my instructors. I was in the beginning of school taking some very easy introduction courses. There was no way I was going to make it through some of my specialized classes if I didn’t do something.

I began calling around to OT’s in my area to find some meaningful therapy that could make a difference in my life and allow me to be successful in school. After calling around to many local clinics and hospitals I finally reached a receptionist who informed me that the hospital might have an OT who would be willing to treat an adult with SPD. I waited for a call back from a woman named Denise and wondered if it was to be another dead end. It was a long wait. But she did call back, and what’s more, she told me she was comfortable treating an adult! I was in!
I showed up for my first appointment on a Monday afternoon in February. I was one and half hours early, even though the hospital is only about 10 minutes from where I lived at the time. I knew that I got lost easily, couldn’t really read a map, and I wanted a chance to feel out the place before I threw myself in (all common adult sensory symptoms). After sitting in the horrible waiting room for 1 ½ hours I was already feeling “fried” (my Pre-OT word for dismodulated or overstimulated), and I was a bit anxious not knowing what to expect of and from my first appointment with Denise.

My intake was awful. I had no tools to deal with the overstimulation that I was experiencing, or even a clue that it was not normal to feel the need to burst into tears or go to sleep. I had only a vague understanding of what SPD did to my body at the time.

At the end of the intake she told me that I qualified for services. I was now scheduled to start therapy on Mondays at one every week. It was very difficult for me in the beginning. I began most sessions on the swing and then moved onto my Sensory Diet. I left almost every session with a sense of peace and calm that I had never felt before despite how hard I had worked in my session. I remember wondering at one point if the peace and calm were what it felt like to live without SPD.

Progress came quickly and in leaps in bounds. The first difference that I really noticed was when I was horseback riding. One day I realized that I felt secure in the saddle and not like I was going to fall off the horse at any given moment. I gained confidence, and as I rode harder I was able to get more sensory input riding as well. Then I noticed that I was sleeping better, and I felt rested when I woke up. My horrible nightmares had slowed down and I was rarely waking up in a complete panic unable to function. I was falling asleep in 10-15 minutes instead of 3-4 hours and sleeping through the night. I had more energy and I was more focused and organized in my life. School was becoming easier to handle by the day, and I was really enjoying some of my more difficult classes, and making it through 4 hour classes! I was gaining core muscle strength and had moved up to 5 lb weights for my arms. I was walking around 5 miles a day with weights on my ankles and wrists and I was enjoying the input. I followed my sensory schedule, and I spent a lot of personal time accentuating what I had learned to add to my repertoire of skills.

I am now enjoying my days again. I spend much of my day working on my Sensory Diet, but the time put into it doesn’t seem to hinder my progress in other areas of my life. I am going to school full time and I am very involved in the online SPD community. I am moderating on two different forums for others out there seeking information and treatment for SPD. I have time for my family and friends and I enjoy and anticipate time spent with them. My horseback riding is going well, and I have been told several times what an “amazing rider” I am.

It sure feels amazing… all of it.


William said...

Wow. Thank you Erin for your story. It gives me a lot to consider about my own son's perspective...he definitely is much happier at times when we are more consistent with OT Therapy, and very unhappy when we are not so consistent.

The difference is truly night and day, and we love to help him be happy. His exhuberance and happiness is infectious, and among the most genuine I've ever seen.

Take Care!

Jaimie said...

Thank you for that post Erin :) Not only does it give me a kick in the pants to hurry up and type my whole deal up...but it's interesting to see other individual's experiences.

Shellie said...

Thanks, Erin! That is really an amazing story and insightful on what it feels like for the kids.