SPD Life Success Stories
Dan's Story
My (Temporary) Story
Ok, I understand many of you are wondering who I am, especially if you are not already a member of one of our recommended groups that I am a part of. Well, I don't have the life story I want to put up here written yet, but should have it soon. In the mean time, here is a look into my life with SPD.
My Life with SPD
I have all three types of modulation disorders (defensiveness, under-responsiveness, and seeking) that affect all five of my `far' senses, as well as the internal senses of vestibular, proprioceptive, and interoceptive. I also have Sensory Discrimination Disorder and every known Sensory Based Motor Disorder (both dyspraxia, and postural disorder). To my knowledge, I have no other disorders. No autism, no ADHD, just sensory issues.
A Dark, Troubled Start
My parents knew there was something different about me before I was born. Through a stressful pregnancy, prolonged labor, and three weeks of premature contractions, my mother had to also endure a C-section to give birth to me. From the moment I left the womb, my mom knew I was going to need a lot of extra support and help in life. She knew something was wrong, but had no idea what it was, and was determined to find out.
During the first year, my mom continued to observe my behavior. I couldn't handle public places well, couldn't be fed around my siblings, couldn't feel or control my mouth or jaw and was a very picky eater. I was very clingy but avoided being touched, and was distressed by loud sounds and appliance noises. I had very low muscle tone and would let things fall right out of my hand. Preferring to be left to play alone, I wasn't a natural explorer and had difficulty with changes and transitions. I had poor balance and posture and wouldn't catch myself when I fell down.
I loved to run and spin in circles (once I eventually learned to walk), and would watch the same movie over and over again, much to the agitation of my siblings. I would break everything I used (when I could actually keep my grip on it), and even obtained the nickname "Demolition Dan". I failed to hit most developmental milestones even though I appeared intellectually gifted. I could just keep going, but there's way too much to mention here.
An Answer?
A friend of my mother had been searching for years to find answers for her own son, who was four and had many 'unusual' behaviors. They came across an occupational therapist that told them about Sensory Integration Dysfunction (SID). Her son was diagnosed with SID and started treating him. After observing me, now at 14 months, she noticed that I acted a lot like her child had when he was that age. Having just found the answer for her son, there was no way she could keep it a secret. She had to tell my mom - and quick.
Scared but hopeful, my mom decided to take me to an OT in search of a diagnosis. She tried as hard as she could to get my evaluation insured, but the company wouldn't budge. She eventaully had to take me in for the evaluation anyway, and I was diagnosed with SID on my first visit to her office. It was 1989, and I was only 18 months old. For my mom, it was the answer she had needed. It came at a great time, as I was really beginning to suffer, and had just been diagnosed as Failure to Thrive.
OT in the Early Years
I received occupational therapy for the next 18 months, twice a week. My parents began to see improvements quickly. After a month or so, I was able to eat a lot better, and was able to gain badly needed weight. I loved OT. At first, it was terrifying to me, but over time, I began to grow to trust and love my therapist. I worked with her and continued to get better, bit by bit. I became happier and more confident, and even began to catch myself when I fell. Unfortunately, my therapy had to be cut short. My mom became pregnant again, and there was no way she could continue to take me. In the mean time, I was enrolled in several other programs recommended by my OT.
On her own to help me, my mother had few resources available. There were no books for her to read, no support groups for her to join, and this is way before Google. She was often unsure of what to do, and just relied on her instincts to figure out how to help me with my sensory issues. I still had to deal with many problems during this time. I had a very limited palate, able to eat so little I needed to be hospitalized once.
Eventually, I was able to return to OT in 1992, and I continued to go once each week until 1994. My SPD hadn't gone away, but things had gotten a bit more manageable. I had gotten to the point where I was comfortable enough to go over a friend's house to play. I was getting better, but eventually, and my parents couldn't afford any more sessions without insurance. A lot of chaos and issues arose in my family for the next several years, and with hardly any knowledge of my issues, everyone eventually forgot about my SID.
Early Years At School - Without OT
Knowing that my issues would likely lead to difficulty in the classroom, my mom had me evaluated to see if I could recieve some sort accomodation from the schools. I was seen by a multi-disciplinary team, who re-affirmed my diagnosis of SID, but they could see nothing else wrong, so because I had no other diagnosis and SID was definitely not considered legitimate, I was enrolled in school and received no special assistance from the school.