Real Moms Share: Michele Gianetti
Michele Gianetti contributed to this issue’s “Real Moms Share” section of the magazine. We asked her to give us an insight into herself, as well as into her life raising her daughter, Elizabeth who has dyspraxia and Sensory Processing Disorder (SPD). We asked her a series of questions; some serious and some “just for fun”. Here is what she said….
PARENTING SPECIAL NEEDS: Tell us a little bit about yourself and family.
MICHELE GIANETTI: We are a family of 5 people, who are very close to each other. We spend a lot of time together as a family and love each other very much. My husband and I have stressed the value of love and kindness to each other, to enjoy all the little things in life… not possessions. Elizabeth is our middle child and has both dyspraxia and SPD. She was diagnosed at 2 years of age. Life with Elizabeth has been a journey for us all.
PSN: Tell us a little bit more about Elizabeth’s multiple diagonses (explain briefly) and her personality etc.
MG: Elizabeth has dyspraxia and SPD. Dyspraxia is a disorder that involves motor planning. Motor planning is what we need to perform tasks. Dyspraxia can affect fine motor skills (coloring, writing, using scissors), gross motor skills (running, riding a bike) and oral motor skills (making sounds and then words). In Elizabeth’s case, it affects all areas…her dyspraxia is global. Dyspraxia also can affect a person’s thinking, they can have difficulty planning a series of movements to do a task and can have difficulty executing those movements. Dyspraxia is very complex and can show itself differently in each person.
The second disorder she has is Sensory Processing Disorder, or SPD. This is a disorder that affects the way the nervous system takes in sensory information and turns it into the appropriate behavioral response. In Elizabeth’s case, all sensations felt wrong or offensive to her. She was always in a state of anxiety and cried so very much for the first 2 years of her life. SPD also has other forms and, again, each child can show the disorder differently.
We began therapy for Elizabeth at the age of 2. The therapy was so difficult and she cried throughout them all at first.
We began the brushing protocol for Elizabeth as well as adding the joint compressions. This was a big turning point for us. Her system was calmed by the protocol and allowed sensory information, that otherwise was offensive, to be processed. We started making gains and noticed she was calmer and happier. The path for working with her dyspraxia involved teaching all tasks; step by step, over and over again until she had learned the steps. All skills have been taught to Elizabeth. The process is long and it is a lot of work, but progress and successes can be made. My daughter has made wonderful, amazing gains in life through therapy and the follow-up therapies at home.
PSN: What moment or event happened that motivated you to take action with regards to writing your book?
MG: As Elizabeth got older, we were advocating for her more and more, and as we did, so many of those people (teachers etc…) who had just met her would ask about her history. As I would explain it to them, they would look at her and remark that they could not believe what we were saying because they were seeing her now. So then I had a thought; that telling our story would be such a wonderful way to let everyone who would be working with Elizabeth in the future to know her and to “get” her right away. Elizabeth, back then, said to me many, many times (3 years ago) “Nobody understands me, Mom” and I thought, “with this book, everyone will understand you”. It is a tribute to not only Elizabeth, but to her story, struggles and journey. It is my hope that by telling our story we can reach others who may be alone, or on their own similar journey, and to let them know there is HOPE and that you can make a difference in your child’s life. Raising awareness for the disorders through the book and our story will help others.
PSN: How did you decide on the title of your book?
MG: The title of the book comes from the words that I have said to Elizabeth every day of her life, and whispered to her before she fell asleep every night since she was one. Long before we even knew what she had, I just knew there was so much more in this child and I wanted her to know how I felt about her.
PSN: You share about the values your family has as a result of Elizabeth, please explain.
MG: Our family has been, as I mentioned before, one that values the little things in life. Things like a nice walk, a family football game, or playing in the snow. We have raised our children to love those things the very moment you get to be together. But, what Elizabeth has added to our values is that we all rejoice in the little successes of life. We can be so happy to see her do something that others would take for granted and it’s those little successes that can mean so much.
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