Author Michele Gianetti is not only a pediatric nurse, she has also written a memoir about her experiences being a mom to a child with SPD and severe dyspraxia. As in our story, she felt that her daughter, Elizabeth's story would not only help others understand her better but also let other 'sensational' families know they are not alone on their journey. There are many of us out here and we are all in this together.
So please join me in welcoming Michele as she talks about her book, her journey and a few of her pearls of wisdom for other families.
MICHELE: Well, I graduated from nursing school, magna cum laude, with a bachelor's in nursing, became a school nurse and worked for a number of years before I became a stay-at-home mom. I have been married to my first love for 24 years. We have three beautiful children, our middle child has SPD and dyspraxia. I love to read, run, workout. And, above all, spend time with my family.
CHYNNA: Wonderful! One thing I greatly admire about you is that you are a nurse. Was that something you always wanted to do? What area did you specialize in?
MICHELE: I did not always want to be a nurse. My family has a strong medical background, so I was always influenced by that. I remember that one time my beloved grandmother got ill. I stayed over her house and took care of her and love it. It was then I knew I wanted to become a nurse. I specialized in pediatrics, as I became a certified school nurse working in a school system with only one of me and 1500 children.
CHYNNA: WOW! That must have been overwhelming at times. And I love the story of how you decided to become a nurse. Very sweet. Now, you’ve written a beautiful book called, ‘I Believe In You’. Let’s start with you telling us what this book is about and what inspired you to write it.
MICHELE: First off thank you for the kind introduction to this question. I am glad you like the book. It is about my daughter who has special needs. She is currently fifteen but the book is the story of her life and our journey with SPD and dyspraxia from her birth until she was age eleven.
Our book tells our story, offers suggestions, websites to visit, it tells of our successes and our failures, and it gives an honest view of life with a special needs child. Most of all it offers hope that you can make a difference in your child's life.
I was inspired to write the book by the words of Elizabeth, when she told me many times that, “…no one understands me.” I thought with this book, “Now everyone will understand you.” I just hoped that our story would reach out to those on their own journeys and offer support and hope.
CHYNNA: I think it’s fantastic that you wrote a book about your experiences and shared them with others. You will help many families. As you know, we have very similar experiences in what we went through in getting help for each of our daughters. The first step, of course, is realizing there is a problem and that we truly aren’t being ‘Worry Mommies’. Please share the initial stages of your journey with your daughter to where you realized, “Yes. I can’t deny it. Something is very wrong here.”
MICHELE: That is such a good question, and may I say such a tough one, as it invokes lots of feelings. But I think the moment for us came when, and I write about it in the book, Elizabeth would not get into the pool we had filled for the girls in our yard. Emily, her older sister was in it and happy as could be, but Elizabeth screamed and screamed, she just could not touch that water. I put her down on the grass to watch and she screamed, I put a towel down on the cement and thought she could be nice and warm and she screamed. She just kept crying and crying. I thought she was tired (easy excuse) and put her upstairs in her crib. When I went up to check her, she was quiet but not sleeping. She was just sitting in the quiet darkness, content to be away from any input...just sitting there. That was the moment when it hit us like a brick. There was a very big and very frightening problem. Now what?
CHYNNA: Oh, I had many, many days like that with Jaimie. I completely empathize and understand. In our situation, we had no clue what sensory issues were, or knew about the SPD Foundation or any other resources caregivers have today. How did you know where to go to get her the help she needed? Did your background as a nurse help you with your search for resources?
MICHELE: The question before almost naturally leads to this one, huh? No, we had absolutely no idea what was wrong with our child. Like you, there was no real support and surfing the web just was not the option then. Our real turning point to finding help was when a dear friend who had worked at Easter Seals had seen a child like Elizabeth with some of the same signs of the disorder called Sensory Integration Dysfunction (now called SPD or Sensory Processing Disorder).
We looked it up, saw it described out daughter perfectly and then I started making some phone calls to occupational therapy places. We found a therapist in our area who specialized in SPD (or SID then), and we were off. My background in nursing, even school nursing, did not in any way prepare me. I had had no experience with a child like Elizabeth. My husband, a physician, and I lived in a state of denial for quite some time.
MICHELE: Elizabeth's dyspraxia is global. It affects the fine motor skills, like writing, or coloring, the gross motor, like running, jumping, and the oral motor. She did not talk until she was five years old. She has had to be taught each and every skill in life step-by-step, and repeated many, many times, until she ‘got’it. Her dyspraxia, like so many, affects her thinking. She needs help to plan a sequence of steps and to perform them, to problem solve and to organize.
Yes her life is hard work each day, but she is amazing and has come so, so far.
CHYNNA: Thank you for explaining that with us. It is very difficult to understand these different areas. Please describe your daughter’s specific form of SPD and what tools/strategies you put in place to help her cope with her daily sensory struggles? Was she officially diagnosed?
MICHELE: For Elizabeth, her SPD is when all things feel offensive or wrong to her system, she cried for a bath, shoes and on and on. She cried each day mostly all day for the first 2 years of her life. If I even left her line of vision, she panicked and cried.
We began with a wonderful, life-changing therapist, who began us on the brushing, joint compression therapy and a sensory diet. We began therapy when she was two and we did serious follow through at home. Currently she has no sensory diet, she brushes herself when she is very stressed or does some weight lifting or a workout for good sensory input, and continues on her music therapy by Advanced Brain Technologies (or ABT). That has made a world of difference for her and her auditory processing disorder.
We cannot take her into a Home Depot or an Office Max, as they are too big and bright for her. She literally freezes in the doorway. One time we were walking in, all was well. I grabbed a cart then looked to see a line of people behind her waiting for her to cross the threshold of the store. Her sensory issues can flair and like we know, then never go away. But at least we know how to handle those flairs.
We have met so many wonderful therapists on our road. Our first one confirmed what we thought saying that Elizabeth had the most severe case of SPD and its co-morbid dyspraxia that she had seen. As we continued on our journey, each of the therapists was in agreement with the initial diagnosis. I think at the time we were beginning our journey, there were not the options of places to go and have evaluations for this type of disorder done. But when you see the positive changes—the growth, the skills learned, the happiness and peace in your child's eyes—you know you are on the right path.
CHYNNA: Jaimie cried through most of her days as well. How heart-breaking is it to know something is wrong with your child but not understand what she needs to calm? I had many similar days. But it is fantastic to see that she has progressed so well through therapy. How is Elizabeth doing today?
MICHELE: Elizabeth is fifteen years old and is doing quite well. She has an interest in cooking and volunteers at a church two times a month with the preschoolers. She has a wonderfully kind personality and is well liked by everyone. She works hard each day at school. She has an aide at school in a one-to-five ratio and we have adaptations in place. Things have to be reviewed many times before she succeeds in committing them to memory.
She has made great strides in her physical skills she can do a standing jump for forty inches, and jump up and over a pole that is knee high for her. This is the same child who never wanted her feet to leave mother earth. All these good things happened with play therapy. Our work continues and evolves. As does Elizabeth
CHYNNA: Aw, that is so wonderful Michele. What a relief it must be to see how far she has come from where she started. Isn’t that a great feeling? Can you give us the most important things, based on your own learning experiences, that caregivers of ‘sensational’ children at the beginning of their journey need to know?
MICHELE: That what these kids feel is real to them. It may not make sense to us, or we maybe can't imagine why they feel it but they do and it is real. Also, read, read, read about the disorder and its co-morbidity dyspraxia. Learn how your child works, and tell those who will be working with your child, so everyone can be on the same page. Tell family what your child has, so they can support you and be a safe haven for your child. And above all, believe in your child. The words in the title of my book are the very same I have said to Elizabeth each day from the time she was one year old. Therapy works and you can make a difference in your child's life.
CHYNNA: Thank you so much for those valuable suggestions. Before we let you go today, we have one more question to ask. You are a very spiritual person as well, which I also am. I think it truly helped get me through the toughest times (and there were many!). I would love for you to leave us with your pearls of wisdom for our readers.
MICHELE: I think one of the biggest pearls of wisdom I have is that all things happen at the time they are supposed to. I know I have tried to make things work one time or another with no success, but I turn around some time later and all has worked out with virtually no effort.
A therapist returns a call out of the blue, or I have a feeling to call this place or that place. Yes, we are guided. And I believe all that has happened, has been guided for us.
Thank you for this chance to share...
CHYNNA: Thank you, Michele for taking the time to chat with us today. You are doing great things out there for our SPD community through your valuable insight as a ‘sensational’ caregiver. I hope everyone takes the time to check out your website, Facebook page and book. Good luck with getting it out further, and please come back any time.
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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 and her husband, an Internal Medicine physician, make their home in Ohio. They are also parents to a 16-year-old daughter and a 4-year-old son.
Michele is the author of the book “I Believe In You: A Mother and Daughter’s Special Journey,” about her daughter who has SPD and Dyspraxia.
Please visit Michele’s blog on her website at www.michelegianetti.com.
2 comments:
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Thank you for writing about your experience in this matter.I was born with are rare genetic condition and trying to find information from people in my situation. Since parents have a hard time dealing with it this makes it harder on the kids. I know you will help many people.
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