My name is Michele Gianetti and I am a mom to three wonderful children, gifts from God is what we call them. But our second child Elizabeth is the one who changed our world the most. She has special needs…specifically Sensory Processing Disorder (SPD) and dyspraxia. Our family has been on quite the journey since her birth in 1997. She has made amazing gains in life, I wanted to share our story, advice and thoughts and help others so I wrote a book about her life titled: I Believe In You: A Mother and Daughter’s Special Journey. The book’s title are the very words I have said to her everyday of her life since she was one year old. Please visit my website to read more about her life: www.michelegianetti.com I am excited and thankful to be able to write a blog each month for TalkTools. I hope you like them.
So many times we plan out our lives, we think we will do this on Thursday, and that on Saturday. We think into the future, planning our vacation way ahead of time to make sure we get good ticket and hotel prices. We plan with the hope of being able to control our lives or at least some part of them. But sometimes in life you learn that no matter how hard you plan or schedule or work, you may find yourself somewhere you never wanted to be and facing obstacles you never planned to face. Even wishing for the things you never thought you wanted and realizing that some things you thought were important are simply not.
Those feelings are not new to me, as we have been on our journey with our daughter and her special needs since birth 16 years ago. Her path in life was not one we planned for, prepared for or thought we would ever be on. But it has brought us many gifts, those you cannot wrap in a box, it made us stronger, better and has changed us completely.
My second daughter’s name is Elizabeth, she is beautiful, loving, funny, complex, caring, kind. She has a great laugh, a great smile and gives one of the best hugs you can find anywhere. Those things I just mentioned are ones we treasure more than the biggest gift in a box. You see Elizabeth was born with Sensory Processing Disorder or SPD and dyspraxia. Both disorders showed themselves shortly after birth and have affected her life each and everyday.
SPD is a disorder that affects how her nervous system takes in sensory information and turns it into the appropriate motor response. All sensations felt wrong or offensive to her and as a result she avoided them. She did not like the feel of shoes or grass, she did not like baths or the bright lights in a store, food had to be a certain texture, she refused food that was not thick enough and on and on. Occupational therapy has become a mainstay in her life.
Dyspraxia is a motor planning disorder that affects one’s ability to plan the steps needed to perform a task and/or the ability to perform the sequence of steps necessary to complete the task. It can affect thinking, and processing of information as well. These motor skills that can be affected include: gross motor skills like running and jumping. Fine motor skills like writing or cutting and oral motor skills like swallowing and talking. Elizabeth’s dyspraxia is global meaning it affects all of these areas. Her dyspraxia made it hard for her to swallow…she spit up an ounce at least during each feeding, to chew, to move her lips and tongue and to talk. Speech therapy, and the use of equipment found at Talktools helped us to hear her first real words at five years old.
So much to tell, so much to share….I hope you will enjoy reading our journey in the blogs each month.