In celebration of Occupational Therapy Month, we asked a parent of one of our clients if she would be willing to share her family’s Occupational Therapy story. She agreed. This is her story…
I had no idea when I made the call, that I was changing the trajectory of our lives. I don’t even remember what I said. I do remember that I was exhausted. My husband was exhausted. And we had no idea what to do next.
It wasn’t as if the concept that something was “different” with my daughter was new to me. I could feel it deep in my being and we were the ones living it. I let the second guessing and lack of experience that sometimes comes as a first time mother overshadow my instinct.
Times too numerous to note, people offered friendly advice. It’s colic, they said. We treated for colic. It didn’t help. It’s just a phase, they said. Trust me, it wasn’t. You have a spirited girl, they said. We smiled because in the grand scheme of things, having a spirited child is a blessing, right? Some even suggested we were spoiling her by giving in to her will. I’ll admit, when times were good, we did everything we could to keep things good because it’s sheer torture to watch your baby in pain, struggling in a world that is just beyond reach. I know now, we were not spoiling her we just do things differently.
Somehow we made it through the first two years. Our daughter didn’t like restrictive clothing – at all. We found a formula that worked. A dress and leggings for the day and a gown for nights. All cotton. Any other fabric, any other style would send her into meltdowns. She didn’t nap well. She abhorred loud noises. She was in constant motion. She climbed. She fell. She crashed. All to the extreme. In fact, it seemed that she had a high tolerance for pain. And when the world was tilted for her, she screamed. For hours. Nothing calmed her. It was like our sweet, loving daughter would disappear. Shopping with my baby was impossible. Inside a store with the lights and sounds and people (I didn’t connect those things to my girls’ trouble with shopping until much later), my daughter would come undone. There were countless sleepless nights as my daughter would go to a world I knew little about and get lost there, crying and screaming for hours. My soothing touch only made it worse. My calm, loving, empathetic voice only added to her pain. When she was in the car seat, clearly out of her mind and body in pain, I would sing and sign (American Sign Language) the alphabet song. Only singing, or only signing didn’t work. It had to be the two together. We missed many important events in our friends and families lives because we simply could not travel more than 15 minutes at a time.
As I read through this, I realize that there is no way these few words could ever accurately describe for you the fullness of our experience.
We found our way to a preschool with incredible, knowledgeable teachers. Teachers who understand children. After caring for our girl for a few months, they lovingly suggested we have our daughter evaluated by a pediatric Occupational Therapist. We waited, not really sure how to wrap our heads around that idea. It’s a heavy load to hear and we needed time. Even extra time to process because we were exhausted. We were emotionally, spiritually, physically spent. They gently suggested again. They offered examples of what they were seeing. We could not deny their observations. We knew we had to try again to get an answer for our girl and help for our family. We finally made the call to Connect the Dots Pediatric Therapy.
Prior to our appointment, we were given a sensory profile questionnaire to fill out about our daughter. Things started to feel less lonely immediately. The mere fact that “someone” understood our lives enough to pose these kinds of questions filled us with hope.
Once the evaluation was completed, we had a way to describe our experience. Our daughter has sensory processing issues (even today, I refuse to use the medical terminology – Sensory Processing Disorder – because I deeply believe this experience we are living is not a Disorder.) Her nervous system interprets sensory information atypically.
We began weekly Occupational Therapy (OT) sessions. Our lives slowly but surely improved. We did a wide variety of therapeutic protocols. Life kept improving. OT gave us the tools and skills we needed to parent our daughter and Connect the Dots gave us a place to feel understood.
Looking back now, some of the most important things I learned came early on during our OT sessions. I learned that there is a difference between a tantrum and a meltdown. A tantrum is a behavioral outburst. A meltdown, which is what we were experiencing daily, is a nervous system breakdown. Many people misinterpret meltdowns as tantrums (and thus led them to advise us to stop spoiling our daughter). I learned we weren’t alone. I learned about the nervous system and the eight, yes EIGHT sensory systems. I learned that Sensory Processing issues manifest for people in many different ways. Some people are sensory seekers, some avoiders, some are both. We learned that without intervention, Sensory Processing issues can lead to social issues. Most importantly, we learned through first hand experience that OT can make a difference for people with sensory processing issues.
Occasionally, I think back to the time before OT and play the “what if” game. What if we had never made the call? Our life is so different now, so much better. We are on a different path of possibility now than we would have been had we not made the call. We are past hoping, well into knowing, that with the help of OT we have made a massive difference in the trajectory of our daughter’s life. For that, we are filled to the brim with gratitude.
– Thea, a grateful mom to a sensory kid that has so much to contribute to our world.