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.
PSN: Your oldest daughter, Emily, is the perfect sister for Elizabeth. Can you share about the important role she has played?
MG: Emily is an amazing, loving big sister. She has always wanted Elizabeth to be her friend and to do things with her that other friends could do with their sisters. Unfortunately, with Elizabeth’s disorders, this was not really possible until years into therapy. Through it all, though, Emily has been there for her sister to rejoice in her successes and to help pick her up from a defeat. Emily could reach her when no one else could. Emily loves her sister and Elizabeth loves and adores Emily. And now they are friends…they talk, share things, and they go places together. Emily waited a long while for this friend. We are constantly thankful for this beautiful “Elizabeth- whisperer”.
PSN: Do you have a proud moment you would like to share about?
MG: I think if I had to think of a proud moment it is when she brought home a great report card. She worked hard for it and for me to see the joy and happiness in her eyes, well, SHE WAS PROUD OF HERSELF. It is times like that when I know she gets how great she is…those are the moments I am proud of. She is doing it for herself.
PSN: What have been some of your biggest obstacles/challenges raising your child?
MG: I think some of the biggest challenges we faced were in trying to get people to understand her and understand her disorders. With dyspraxia, there are outward signs, but sometimes getting people to understand how the thinking part of dyspraxia can affect her each and every day, well, that was hard. To be her advocate is a job that takes many twists and turns. But, I think getting someone who will be working with her, to truly understand her, is the first and biggest step. Then, instead of having to worry, you can work together and achieve gains.
PSN: I have to admit, I was a little jealous about the Blessing of a great team you were able to assemble to help guide you in raising your daughter. What a gift to continue to have a confidante and consult like your “Mary MA/CCC/SLP”. Can you share only one tip, or piece of advice, that you learned from Mary?
MG: I said it in the book (and I actually just said it to Mary herself just the other day)…she is a gift to us. I cannot say it enough or thank her enough for the guidance and care. I have learned so much from her in these years, but something she said to me many years ago still stands out to me: More is not always better. I was, at the time, trying to fit in as much as possible into Elizabeth’s days in order to help her catch up. I was noticing stress in Elizabeth and could not figure out why. It was a freeing comment and one I fall back on even today. All things happen for a reason. And, when they do happen, to know that I do not have to “do it all right now” is a gift.
PSN: You mention in the book that through raising Elizabeth, you were left with your own battle scars? Can you explain what you mean?
MG: Wow, good question. I know that when I look at a picture of myself before I had Elizabeth, I almost do not recognize the face of that person. We will never be those carefree people again. We have lived, and done, so much since Elizabeth arrived. I think being with a child in public who has Elizabeth’s disorders now is so stressful and anxiety provoking. I have read so many posts on my book’s facebook page from other mothers who hate the stares and comments. This is in a time when her disorders are more recognized. Imagine 13-14 years ago, to be in public with a child who was crying or upset all the time! People just did not know about these things, so the looks, stares and comments do take a toll. Going into a public place went from being a quick trip to a severely nerve wracking experience. My battle scars stem from those times when I could not control the place, the lights or the long lines and all I wanted to do is get out. It was tough and it does stay with you.
PSN: You also share about many academic ideas, therapies and strategies you have tried. Can you share about one thing you’ve learned that has made a big difference in your life and that you would like to share with other parents?
MG: To set up a daily communication with the teacher, or school personnel, your child will be with each day. Arrange for them to send a paper home each day. Let them know that nothing is too small for them to tell you, no success is too small for you to know about. Keep the communication flowing….then everyone will be on the same page to help your child succeed to the best of their ability.
PSN: What advice would you give to new parents raising a child with similar special needs?
MG: To read as much as you can! Reach out to a support group just to have a place to share feelings and to find out how the disorder(s) affect your child. Then you can find out how best to treat them and how to make adaptations in your home and life to help them succeed. Once you know this, you can advocate so much better for your child and can tell others all the information they need to know about your child. This is assuming of course, that your child has been seen by their pediatrician or had another professionals evaluate them to actually get the diagnosis.
PSN: Are there any special resources you have found that have helped you on your journey (local or web)?
MG: I think when we were initially on our journey not much was out there to read or use as resources, so, I chose to talk (and talk) to our therapists. I found that they can be a wonderful wealth of information. I can offer to those reading this to talk to and use ideas the therapists offer. In this day and age, people can take the idea from the therapist and look up more information on-line. But, therapists make wonderful friends.
PSN: In conclusion, you compare raising a special needs child to playing a game of chess, would you care to elaborate?
MG: As it is in chess, if you take your hands off the piece you have to count that as your move. So, before you “make a move”, you have to think of what could happen, or NOT happen, if you pick one move (decision) over another move. What are you going to do if what you think happens, does happen, or what to do if what you think will happen doesn’t. I feel that each move we make has to be the next best one for Elizabeth. We have to weigh each move and outcome and be ready for what takes place.
PSN: Anything else you would like to share?
MG: I have to offer out, at this point, some of the resources I have found that can be so helpful to those on their own journey. For information about dyspraxia and some great links to get support, please visit www.dyspraxiausa.org. The founder of dyspraxia USA is Warren Fried, and he is extremely nice and always willing to talk and help. To see the list of signs and symptoms of SPD, please go to www.sensoryhealth.org/. Dr. Lucy Miller is affiliated with this foundation and well known for her work with this disorder. She was kind enough to write the introduction to my book. Additionally, www.talktools.com is a great site for help with oral-motor needs. The site offers many of the tools we used to help Elizabeth learn to talk. For information about The Listening Program or TLP, please go to www.advancedbrain.com. This is the music we have been using to help with Elizabeth’s auditory processing disorder, as well as comprehension and attention. It is amazing all the benefits this music brings.
Michele Gianetti, R.N. is the author of “I Believe In You” As the veil of denial is slowly lifted, Michele faces up to the fact that something is terribly wrong with her beautiful baby Elizabeth. Join her in I Believe In You as she travels a road unfamiliar to most parents, into Elizabeth’s world, the world of dyspraxia and sensory processing disorder, and meet the wonderful group of individuals, both therapists and friends who help her on her journey. Her devotion to Elizabeth proves there are some things that withstand even the greatest challenged: a mother’s love and the words “I believe in you.”
Read More: Real Moms Share
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This post originally appeared on our March/April 2013 Magazine