Real Moms Share: Janice Fialka Shares about Her Thoughts on a “Dance That Matters”
Janice Fialka is a well renowned author and speaker who contributed to this issue’s “Real Moms Share” section. We asked her to give us an insight into herself, as well as into her life raising her son, Micah, who has a cognitive impairment. We asked her a series of questions; some serious and some “just for fun”. See what she said….
PARENTING SPECIAL NEEDS: Tell us a little bit about yourself and family.
JANICE FIALKA: My husband and I have 2 children; our son, Micah, is 29 years old and has an intellectual disability. Our other child, Emma, is 25 years old. We have been a family that has taken on the opportunity to, in some ways, really rediscover what it means to be human.
JF: Micah was full a term delivery; very colicky, crying a lot, no one believed how much he cried until they stayed at our house. He was not a very happy baby. Now, however, he is very social. Folks who follow him on Facebook know he is “so happy in life right now”. He is very outgoing and emotionally attune with himself. In terms of his diagnosis, he is what used to be called “neurologically impaired/mentally retarded”. Now, we say he has an “intellectual disability”. Micah requires support in order to read, write, and do math. He does this through the use of modifications and accommodations such as: Screen Reader, Power Point, and a voice-to-text program called Dragon Point and Speak which enhance his independence to learn and communicate. Micah even has a poem listing all of the disabilities he has. Micah was “fully included” in elementary, middle and high school. Initially, he was segregated in elementary school until he told me that he wanted to go “through the same door as all of my other friends”…..which started our movement into getting Micah fully included.
PSN: * It should be noted to our readers that “Through the same Door: Inclusion includes College” is also the title of an award winning short film that documents the new movement of fully inclusive education by exploring Micah’s desire for a life without boundaries. Essentially, this is a film about a young adult with cognitive disabilities going to college.
PSN: Share with us something YOU, personally, had to overcome by being a mother to a special needs child?
JF: In the early years, I was pretty terrified and to be honest, angry. I think the anger had a lot to do about being scared. It’s not what I wanted or expected, but, with time and support, I gained a sense of tolerance, and taught myself that we have to reimagine our life in a story. Initially, my story was “Oh my, my son has a disability. Life is gonna be really tough and I imagine my new life isn’t gonna be so good”. With time and with meeting other parents (and hearing other stories), you begin to retell your story and say, “our family has this opportunity to enter into a new world with new people and really rethink how we imagine what will happen for Micah, and our family as well”. I don’t know if the issue is really about “overcoming”. I learned a lot about that term in the disability world. I learned that overcoming isn’t necessarily what we do…it’s learning to integrate what his difference can do to transform us. It really is about “owning” our child for who he/she is. This is really the journey we take….a journey where you never really “arrive”. I had to find people who would allow me to have the range of feelings that I had so that I could not bury them and move on and realize that I needed time to deal with the grief, the loss, the anger and the tears. As I did that, and as I learned to build a new community, I then fell in love with my child and my life.
PSN: What kind of life do you envision for your child’s future?
JF: The life Micah is currently living is the life I envisioned for him. He goes to college; he is currently a teacher’s aid at a college, he is involved in an internship, and continues to amaze us by all the hard work he is doing. Micah is living what some might very well say is “an enviable life”. He lives, with support, in a completely different city, in another state. He has created circles of friends and circles of support. He lives with Interdependency…he is very happy…they “get him” there.
PSN: What was your impetus/catalyst/spark/motivation with regards to writing your book (what was the moment that made you decide to take action)?
JF: Very early on (partly because I was a social worker) before Micah was born, I had some understanding of the importance of connecting partnerships between parents and professionals as well as clients and professionals. But, then when I was on the other side of that dance (as I like to refer to it), I didn’t always feel understood and, in some ways, valued by the professional. So, I knew that having a child with a disability was going to be challenging, but, I didn’t know quite how challenging. I also didn’t know how challenging it would be with the professionals either. Sometimes it is even more challenging than having a child with a disability. So I really had this quest to understand why it was that when people come together at a big table for a meeting…and basically are good folks who care about making the world a better place…why, then, is it that often times they end up “slamming on each others toes”. That was what most bothered and baffled me about being a mother and a social worker. That happened very early when Micah was young. A lot of people didn’t allow me my feelings….that motivated me. It made me want to share my story. Drop the “parent to professional” labels…we are all people. Otherwise, we won’t be as effective in our collaborations.
PSN: How did you come up with the title for the book: Parents and Professionals Partnering for Children with Disabilities: A Dance That Matters
JF: The original title of this book was “Do you Hear what I Hear?” it came out in 1999. I think that title really said it all, but in 2012 a Revised Edition was coming out and after I met with the publisher he said that when you typed it into the search engines, it was too vague and wouldn’t come up. Also, the parents and professionals wouldn’t get it. So they wanted it to be more specific. So that’s why we have a longer (and now more specific) title.
PSN: There is a strong metaphor of Dance used throughout the book, what is your connection to dance and why did you choose it?
JF: Many years ago, in Michigan, I was asked to be a keynote speaker at a Part C (Early Intervention) Ball and was asked to speak about the Parent/Professional Partnership. I was very nervous about this, so, before the speech I searched the word “partner” and the third definition that came up was “one or two people dancing together”. So, I thought “this is like a dance; we’re with different partners and how they dance together”. That’s where I realized this is like a dance; we are doing this together and we’re stepping on people’s toes, we don’t often hear the same music, or we’re afraid of how we will be judged while we are dancing and so on and so forth. Also, the fact that my mom and dad are beautiful dancers inspired me. Whenever they heard a song they liked, they would stop what they were doing and just start dancing. So, naturally, there was also a deep association for me with dancing being like love. In addition, nowadays, the dancing metaphor is more in the public perspective with shows like Dancing With The Stars.
PSN: What is the takeaway you want readers to get from reading your book?
JF: The importance of reflection; taking time to step back and think about what you’re doing and your own “dance”. Reflecting on that as well as what the people sitting at the table would be going through as well. This is also what other people would call The Power of Pause. Often times, as the parent of a child, you have all of this emotional energy and you want to make it “all right for your child” so the importance of reflection is so crucial. Secondly, the book is about kindness. We need to be kind to ourselves as well as to others. Lastly, you can’t always dance with everyone gracefully. But, if you can find one person who you can partner with each year that values you, isn’t afraid of your strong emotions, asks you for more ideas and who “gets you”, then it allows you to then focus your energy on that relationship. It can change how you support your child.
PSN: Do you have a proud moment you would like to share with us?
JF: I can remember when Micah first learned how to suck out of a straw! That’s not what you’re talking about really. But, one of our proudest moments is when Micah wanted to live in the dorms at the college he was at. He had to go to the board and had to self-advocate for himself…he actually had to file a suit for his rights. It was hard and they said “no”, but, he kept pushing for his rights. It was very humbling for us to see. They interviewed/deposed Micah for five hours; they gave hypothetical situations that made Micah appear to be incompetent to live in a dorm; they put a video camera in front of him for 5 hours; they put the Vice President of Student Affairs in front of him for five hours. Here comes the Proud Moment: at the end, when it was all over, I picked him up in my car and asked how it went? He said to me, “I was good mom, I did good”. He told me the last question he answered was “do you think the vice president discriminated against you” and Micah said “yes”. Then he turned to me and said “do you think I hurt her feelings?” I was SO MOVED that he could have that emotional connection that he didn’t really want to hurt her feelings but he knew that he had to fight. It was stunning. I have a more simple Proud Moment I would like to also share; Micah was speaking at a conference and he called home and said “mom, this mother came up to me and said that I gave her hope and that now she is going to go back to her home and fight for her 8 year old daughter that has Down Syndrome”. It was a beautiful gift that this mother gave to Micah.
PSN: Janice, thank you so much for your book and for sharing with us your experiences and the lessons you have learned raising Micah.
Parents and Professionals Partnering for Children with Disabilities: A Dance That Matters Nominated for the Distinguished Achievement Award from the Association of Educational Publishers! Written from both the parent’s and the professional’s points-of-view, this book is rich with stories, examples, and practical suggestions. Using dance as a metaphor, the authors provide a developmental approach to understanding and forging positive adult relationships while showing concrete ways to advocate for and with children.
Photos Courtesy Janice Fialka