What is your life’s purpose?
My life’s purpose is two-fold: to be the best advocate I can be for my special-needs and to share our story to raise awareness.
How are you living your purpose?
I am living my purpose by advocating for my daughter, Elizabeth, now 20 years old. She has Sensory Processing Disorder (SPD) and Global Dyspraxia. These disorders affect her life each and every day.
SPD is a disorder that affects how the neurological system takes in information from the senses and turns it into the appropriate behavioral or motor response. SPD can have many forms, but in Elizabeth’s case, termed over-responsive, her system found all input offensive or wrong and she cried.
Dyspraxia is a disorder that affects motor planning. Each and every task or skill has to be broken down into steps and repeated to help Elizabeth do them herself. Dyspraxia can affect fine motor skills like writing, gross motor skills like riding a bike, as well as talking. It also affects short term memory, as well as the ability to organize the steps necessary to complete a task as well as initiating those steps to do the task. Dyspraxia can affect each person to a varying degree. Elizabeth is globally affected.
Strong, positive advocacy helps Elizabeth because teaching those who work with her how she works is. I talk for Elizabeth when her disorders make it difficult for her to get all her thoughts and words out. I support her in her dreams by believing in her each day.
I also raise awareness for SPD and Global Dyspraxia through my writing—books and blogs-social media, and presentations. I hope to reach as many people as possible and help them understand how these disorders can affect individuals.
How did you find your purpose?
I found my purpose when I was not looking. I am a nurse, a school nurse actually. I became a stay-at-home mom with the birth of our first child, but it was our second child, Elizabeth, who made us feel that something was not right. I found myself looking for any information about what we were observing. She would cry all the time, wouldn’t touch things or try foods-cried in the bath or when her feet touched grass. I could never leave her line of vision and had to hold her constantly. She couldn’t sit up or walk well. There were so many signs. We got our first non- official diagnosis by an occupational therapist, followed by another one by our pediatrician.
I began learning, reading and educating myself on how to help her grow, live, and learn. Then as she got older, I saw how much I need to teach the teacher, and help those who work with her-teachers, support staff, aides, and administrators-to understand her disorders and to understand how she works. The more people who know this, the better chance Elizabeth will achieve success in life.
Elizabeth kept achieving and growing and I kept advocating and then she said the words to me that really impacted my heart, “Nobody understands me.” It was then I realized that this was still so true, even after all our work. In that moment, I decided to write my first book, I Believe in You: A Mother & Daughter’s Special Journey, to let everyone know all that Elizabeth has done in her life, to raise awareness for SPD and Global Dyspraxia, and to help others struggling with these disorders. I wanted to offer hope.
What advice do you have for purpose seekers?
Allow yourself to follow where your true heart leads you. This is your purpose-even though you may not recognize it right away. I know I did not see life taking the shape that it has, but it did and it is my purpose. I am a firm believer in listening to your heart.
What resources do you recommend for those who’d like to learn more about SPD and Global Dyspraxia, or about raising a child with special needs?
Dyspraxia Foundation USA
Star Institute for Sensory Processing Disorder
Special Needs Essentials
Michele Gianetti is a registered nurse, who previously worked as a school nurse before becoming a stay-at-home mom and eventually an advocate for her second child, who has special needs. She is the proud mom of three beautiful children. She loves spending time with her children and her husband. Just being together and being allowed to share life together is her joy. Michele loves to read, write, and exercise, with running being a very big favorite of hers. Who doesn’t need the stress relief a good run brings? Raising awareness for the disorders that her daughter has is a big passion of Michele’s, she has watched so many people work with and encounter her daughter who just did not “get” how her daughter works. Teaching and raising awareness of Elizabeth’s dyspraxia and sensory processing disorders through her writings and her book is one of Michele’s main focuses.