What is this workshop about?
I had a lot of questions when Giana was a baby. I looked for a book that would give me a perspective on this journey and could not find one. So, at the end, I wrote the book I wish I had had. I hope that parents new to this journey find insight, hope and answers by reading the book. By interviewing parents familiar with this journey I found the wisdom I was looking for.
What types of things were happening that made you think something may be wrong with your child?
I noticed symptoms, behaviors and inconsistencies that seemed so strange. She was fine one minute and sleeping the next in the middle of the day. Sometimes, her body would shake so hard that whoever was holding her worried that she could jump out of their arms. Other symptoms like appearing as if she was blind, the inability to ride in elevators, cars, shopping carts. Agitated when the TV was on, sounds or going into a department store, gym, … This in addition to speech and severe balance problems called ataxia. By age 4 she could walk… but only 4 or 5 steps and fall. Someone always walked behind her.
Why did you write this book?
I wanted to provide parents new to this journey a window to see how other parents, not so new, manage situations like this.
What surprised you while writing this book?
I was pleasantly surprised by all the excitement. I found that people wanted to share their stories and after, would ask if they could have others contact me to share their story too.
Now that the book is published, are there surprises about the book itself?
While I wrote this book for new parents of children with special needs, I find that it is actually a book for every parent. Everyone can gain an awareness and knowledge of themselves as individuals and parents. And everyone can benefit from understanding that the choices they make impact others.
As you interviewed parents and caregivers, what types of things did they say they learned about themselves?
Many talked about learning how to exercise their patients to a whole new level, how to deal with people outside of their situation who were helpful and some who were downright mean. They talked about how they learned how to pick their battles when deciding what is best for their child.
What do you do when someone is outright mean, rude to seems to ignore your child?
Well, first, I think there is a difference between someone who is outright mean and rude and someone who just does not know what to do, so they do nothing and their passiveness may look like they are ignoring our children. Fortunately, those who chose to be mean are a small percentage of people…maybe 10%, while the others are 90%. We have to make a sometimes quick decision about when to ignore comments and stay silent and when to step up and speak the truth. Some of the experiences parents have had with rude or mean people are unbelievable and difficult to hear. I could not include all of them in the first book, but plan to include them in the next.
How do couples in this situation successfully solve problems together, given the constant stress and sometimes, life-threatening decisions?
Solving problems successfully as a couple or with your life partner is all about the perspective of where you are, where the problem is and how, as a team, you handle the options and resources available to reach your goal. Like I write about in the book on several occasions, you are a team for a reason, and teams learn to stick together.
What have you learned from individuals with special needs?
I learned about living in the moment, about how people limit themselves in their own heads and how to actively listen. One thing I know is true from my own experiences and from the experiences of others is that sometimes, you have more LOVE for a child than you have answers. That’s a tough one to accept, but it’s a common reality on this journey.
What keeps you motivated to want to write more books and go out and speak about this topic?
Giana, my boys, and those family and friends who gravitate around her. Especially their friends who have no other connections with this journey. They may not know anyone in their family or immediate circle who has special needs, but still, they volunteer, spontaneously spend time with our kids and embrace our kids sincerely. I am amazed by the children and young adults who voluntarily embrace kids with special needs because they want to. They motivate me and give me energy. Also, they intrigue me and I want to learn more about what motivates them. I hope this is a topic of my next book.