If you have more than one child and one has special needs how can you explain these needs to the sibling(s)? Michele Gianetti’s beautiful children’s book titled Emily’s Sister: A Family’s Journey with Dyspraxia and Sensory Processing Disorder (SPD) helps siblings, classmates, friends, and family members understand the challenges faced by families and individuals with special needs.
Michele’s first book was published in 2012. I Believe in You: A Mother and Daughter’s Special Journey chronicles the first twelve years of Elizabeth’s life, her second child. In April of 2012, we posted our first interview with Michele and in this second interview we look forward to learning how Elizabeth is doing now and to learn more about her children’s book.
Links to our first interview, reviews of Michele’s two books and where to buy them are at the end of this post.
Lorna: Congratulations on your lovely children’s book, Emily’s Sister: A Family’s Journey with Dyspraxia and Sensory Processing Disorder (SPD). Many people have never heard of dyspraxia. Please explain in simple terms what it is and what were the red flags that prompted you to have Elizabeth tested.
<<Michele Gianetti: Dyspraxia is a motor planning disorder that affects fine motor skills like writing and coloring, gross motor skills, like riding a bike or catching a ball and oral motor, such a talking and making certain sounds. There are the outward signs of Dyspraxia but it is the unseen, inner signs that are the most difficult to work with. Dyspraxia also affects short term memory. As well as the person’s ability to organize the steps necessary to complete a task.
Dyspraxia is a complex disorder in that it can affect each person so differently. Some people are more affected than others, Elizabeth is globally affected. I think if I were to be honest, and trust me, so many things about Elizabeth as an infant made me feel that something was “not right” was when we had to train her to sit upright on the floor, we had to hold her upright a little more each day until she “got it” and could do it on her own. We never had to do this for our oldest child!!! This is what made me want to know what was going on with her and her body. Please go to www.dyspraxia.org to read about all the warning signs of the disorder
Lorna: Once Elizabeth had been diagnosed with dyspraxia and SPD what treatment/therapy did she need to have as a young child?
<<Michele Gianetti: Elizabeth had Occupational Therapy, with a focus on intergrating sensory input. She also had speech therapy since she was two years old. The focus of the speech therapy has changed as she has progressed. We did the Wilbarger protocol with Elizabeth (brushing). She uses Advanced Brain Technology’s TLP program, which is her therapy music. She has also had a tutor for all of her school years. It was always so wonderful to see the gains she made!
Lorna: Readers are encouraged to read Michele’s parenting book, “I Believe in You: A Mother and Daughter’s Special Journey” to learn more about Elizabeth’s childhood.
Teen years and high school are difficult for many; therefore, when a teen also has dyspraxia it should be much more difficult. What was high school like for Elizabeth?
<<Michele Gianetti: I think one of the hardest things for us to see is that Elizabeth really wants to do something and she struggles so hard with it. She says “I hate my Dyspraxia” We have encouraged her to talk about her feelings and emotions often and honestly. This gives us a chance to know what is going on inside her as she grows older. So related to high school, I think it has been fun for her. We have taught her self-advocacy, so she has a voice in all choices. The thing about children with dyspraxia is that they are developmentally three years or so behind their chronological age, so that has been a challenge in finding activities, but once you know your child, you can advocate for them and their needs, and once this is done, the proper supports can be put into place which leads to successes. It is so critical, in my opinion, to educate those working with your child, on how your child “works”, this brings everyone to the same page right away. This is always a good thing.
Lorna: One does not outgrow dyspraxia or SPD; therefore, do individuals take this in consideration when choosing a career? What could universities or employers do to accommodate students with various challenges?
<<Michele Gianetti: That is a really good question. I think they would most definitely have to take them into account. In our case, self- awareness allows Elizabeth to know what will or won’t create a stress with her system. The same self-awareness becomes a starting point for conversations about choices of schools or careers. So I think, in my opinion, having someone available to have these conversations with prospective students with these disorders or others would be amazing. Not just to have the conversations, but to help them problem solve and offer alternatives and supports. Because each child is different, and as such their needs are different.
Lorna: Often we hear that siblings of children with special needs find family life difficult because so much time is given to the child with special needs. What advice do you have for families so that all children feel they have their share of attention from their parents?
<<Michele Gianetti: One of the biggest things I can say is to make time to listen to your typical developing child. Really listen to their feelings and thoughts and let them talk. I know Emily, who is our oldest, has told John and I several times how grateful she was that we allowed her to say what she was feeling about her sister, life with her sister and all the emotions she felt along the way.
Truth is, I loved hearing Emily and I wanted her to know that we cared how she felt because she is on the journey too. Also, cheer as loudly as you can for each and every success from you special needs child, but do it also for your typical child. Let them know that it is okay, more that okay actually, to celebrate their happy moment. It is wonderful that the typically developing child achieved success, in my opinion, never subdue your celebration for your typical child so as not to hurt your special needs child. We shared all of Emily’s successes with Elizabeth and all of Elizabeth’s with Emily. They were happy for each other and if Elizabeth wanted to talk about her feelings we did. I guess talking and talking and more talking is what worked for us….wrapped up, of course in a lot of love.
Lorna: What motivated you to write your children’s book, Emily’s Sister: A Family’s Journey with Dyspraxia and Sensory Processing Disorder (SPD)? What comments have you received that has made all the work involved worthwhile?
<<Michele Gianetti: I look at Elizabeth’s little brother and how different it is to raise him with a special needs sister than when Emily was younger. Because we are equipped with a much greater deal of knowledge and experience, we can help Michael understand what is going on with Elizabeth or why she may react in a certain way. We are much better at helping Michael understand. I wanted to write the book to help the “Emily’s and Michael’s” of the world. To help the parents and caregivers have a starting point for conversation. To share our real life story to offer hope.
<< Michele Gianetti- I would love to write another children’s book, I have some ideas!
You have a very interesting and informative web site, “Michele Gianetti: life with SPD and dyspraxia”. Who are you trying to reach with your posts and what do you mostly write about?
<< Michele Gianetti- Thank you! I really am trying to be honest and open about life and its challenges with the disorders of Dyspraxia and SPD, as well as the challenges and successes with our beautiful Elizabeth. I mostly write about real life, sometimes I offer out past experiences to help others understand what I learned from them. And other times, I share a current story, complete with struggles and successes Because our life and Elizabeth’s needs are always changing, I want to share posts that are an honest look into what life is like. There is a lot of love, hope and laughter to share.
Thank you very much for taking the time for a “second” interview. All the best to your family!
<<Michele Gianetti: Thank you Lorna, for these great question, and the chance to share our newest story. I wish you the best as well.
Follow Michele Gianetti:
Info about Dyspraxia: http://www.dyspraxiausa.org/
Info about Sensory Processing Disorder: http://www.sensory-processing-disorder.com/
Buy Books by Michele Gianetti: