Interview: Life with a Superhero!

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I am interviewing Kathryn U. Hulings, the author of the wonderful book about Michael, the Superhero! 

“Most of the books about parenting a child who has Down syndrome are concerned with
only the first few years of life and are based in biological births. Life with a Superhero is
fresh and new in that it engages the reader with the parenting journey all the way into
young adulthood and it also involves the spectrum of adoption. “

1. Can you tell us about the first moment you met Michael; and your story in a nutshell?

My family and I first met Michael at Stapleton Airport (the predecessor to DIA) on March 24, 1991, after he arrived by airplane in Colorado. That was the first day I held him in my arms, and when his brothers, sisters grandparents, aunts, cousins, and a couple of friends first kissed him and played with his feet.

At that moment, I could not have known that Michael, his siblings, and my husband, Jim, would save my life when I became gravely ill and was left forever physically compromised. Michael’s life and mine are both marked by difference and challenge, but we are forever intertwined in celebration and laughter.

This literary memoir wraps itself around the raucous joy of Michael’s existence with his four older siblings who play hard and love big; how my husband, Jim, and I utilize unconventional techniques in raising kids; the romance between Michael and his fiancée, Casey; the power of dance in Michael’s life as an equalizing and enthralling force; the staggering potential and creativity of those who are differently-abled; and the mind blowing politics of how I navigated school systems and societal attitudes that at times fought to keep Michael excluded from the lives of kids deemed “normal.”

The story itself was both a joy to write and very complicated to write. It was joyful because it is about my favorite people in the world—my children and my husband—and how they are the center of my life. It was complicated because I had to revisit some ideas and times that were full of sorrow or remained intricate in how they were unresolved or in some sort of limbo.

As such, I did worry about sharing aspects of this book with the world. For instance, my husband, Jim, and I knew that sharing the circumstances of Michael’s adoption with the readership of this book would be the catalyst for finally sharing that info with him. The book took over five years to write, and had its genesis over twenty years ago, so we had discussed it at great length, finally deciding that Michael was ready to know. In the end, it is a great and beautiful part of Michael’s life that provides special context for his singular story. It needed to be included. When we told Michael, he was somewhat nonplussed. He is exceptionally secure in how much he is loved and cherished.

I also hesitated when writing about issues of sexuality. But sexuality is an imperative, exciting part of life! Its importance is no different for Michael, but the context has been. I had considered myself to have been open about sex with all my kids, but Michael made me realize that I really hadn’t had a completely honest conversation about sex with anyone. Michael behaved in certain ways, asked certain questions and shared certain information, all without an iota of shame and little inhibition, that left me no choice but to explain issues of sex and the body very carefully, thoroughly, and repetitively. To have not written about it would have been to overlook a very large part of existence.

At first, I also did not want to write about my personal experiences with illness and the resulting physical issues I face. Again, after much soul searching and late night talks with Jim, I decided that leaving it out would be dishonest. It happened, and it has affected my life. Every day I remind myself that even though I face some unique challenges, I am so very blessed to be here, to be alive and to be the mother of five wonderful children and the partner of a remarkable man. Every day I vow to live my life to the fullest and to celebrate even the most difficult of days. I knew that not telling this part of the story would also take away the chance to offer hope for people experiencing their own pain.

I also needed to be honest about my own actions and behaviors that were not exactly positive, to say the least, which gave me pause. Again, I needed to be honest because at times, we all stutter and stumble and act ridiculous, especially when it comes to our children. I try to show that in some situations, I would have done anything to keep Michael safe and included. That doesn’t mean everything I did was beyond reproach. What I see now in hindsight as bad behavior, really seemed necessary in some of the challenging moments that occurred. If I wanted to connect to other families, I knew that leaving this out would make me seem unapproachable and unreal.

In the genre of creative nonfiction, it is imperative to write that which is true. Still, the genre is subjective, as the truth being told is from the writer’s perspective. This was also a concern I had. There is always the risk of a character in a creative nonfiction story being offended or hurt about what is written. I tried to protect identifies as much as I could where this might occur and follow the best ethical writing practices I could.

2. Why did you decide to start writing his story?

I just knew that I needed to chronicle what was unfolding before me in my family’s experiences. I sensed that having an adopted child who has a disability and then becoming disabled myself was not an exclusive experience, even though at times it felt quite solitary. I figured that maybe I could share my family’s journey and help other families in the same boat feel not so alone and maybe giggle along the way.

Likewise, my tales of living with Michael and all his siblings do show that sometimes we do very creative things to help our children that might look a bit nutty, and I hope this might also provide some sense of normalcy for other families.

I hope that readers will walk away with a new found appreciation for the potential we all have in life, regardless of our genetics. I also hope that readers will walk away smiling and maybe feeling a bit more normal in their own strange and wonderful existences.

Finally, so many of our other kids’ friends and their parents have shared with us that knowing Michael has changed their outlooks on disability and provided opportunities within their own families to talk about acceptance, kindness, and their own roles in making the world an inclusive place. I hope that feeling can be expanded with this book.

3. What was the hardest/best part in raising a child with Down-syndrome?

My major concern was when Michael started school. I wondered if he would have friends, that he would be included, and that he would learn how to think in meaningful ways. This was my major concern for all of my children in their educational milieus!

I admit, though, that I experienced a bit more maternal angst with Michael. I was concerned about large class sizes, the possibility of contained classrooms where Michael would not benefit from inclusion, and the potential for cruelty.

My family is fortunate in that we live in a district with a progressive school system that values inclusion. Still, our game plan was based on always being involved and in the forefront of decisions that were made regarding Michael. We made sure to be immediately and continually connected with Michael’s special education teachers, general education teachers, school counselor, principals, doctors, friends, and other parents in order to not only always participate in Michael’s Individual Education Plan meetings (IEPs), but to formulate and present our dreams and Michael’s dreams as a big part of the discussion and planning.

I believe that in general, ideological progress is being made in the United States toward communities banding together to address many of the concerns, including educational issues for children with special needs, especially with such things as Rosa’s Law, Spread the Word to End the Word, and continued adherence to IDEA and ADA laws. I still think, however, that there is much practical work to be done in terms of training educators how to create a meaningful, inclusive classrooms; assuring funding for that to happen; and educating businesses on the wonderful perks of hiring people with special needs to be part of their workforce.

It may not be optimal, but continuing a lot of this work will have to be spearheaded and done by families.

4. What are your pieces of advice to parents with special needs?

Most significantly, I would suggest that parents seek out communities of support! Find parents in similar situations and meet informally as friends who support one another.

Within their communities, I also suggest that parents form what are commonly known as “circles of friends” for their children who have special needs. There are many wonderful people in the world who would love for their “typical” children to be able to form meaningful relationships with children who have special needs.

Beyond support, I suggest parents access recreational and educational community resources for their children. Join playgroups, enroll in pre-schools, and participate in Special Olympics and Best buddies! Go out into the world, and enjoy all that is there with your children! Play. Have fun. Love. Celebrate.

I strongly suggest that parents create and foster positive relationships with the medical community, the therapeutic community, and the educational community. These are the folks we need for professional guidance and who help us through some of the more difficult obstacles we may face.

Finally, I would suggest to other parents to not hesitate to advocate for their children. Ask questions! Speak out! Form partnerships and communities that can create change where change is needed!

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I am so thankful to Kathryn for her answers and for sharing her story and life with me, with us!
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