Living In My Skin

Interview By Allison Martin

Lori Hickman is a speech pathologist who has worked with children with communication disorders for over 17 years. In her book Living In My Skin parents of children with a variety of disabilities speak about their lives with searing honesty. They share their experiences on a variety of poignant issues - including finding out about their children's disabilities, difficulties in finding services and support, and heartfelt concerns for the future.

What inspired you to write Living in My Skin?

Lori Hickman: I attended an Angelman Syndrome Conference in Seattle several years ago. I had a little angel on my case load and was eager to find out all I could about treatment approaches, particularly in the area of communication. I anticipated that I would learn many good, clinical things. What I learned was beyond my expectations, and not simply in terms of clinical information. Many parents attended this conference with their angels of all ages. I was overwhelmed by the amazing wealth of knowledge and understanding of this disorder that I gained by visiting with these angel families. Before I left, I was invited to join the Angelman Syndrome listserv, an email discussion group that is comprised of those who live with and love angels.

I joined this listserv, and though I was mostly a lurker (a person who reads the posts to the list, but does not post herself), I quickly became convinced that, as a clinician, this was the most powerful and complete source of information I could have about Angelman syndrome. I then joined other listservs for special needs families, in order to tap into this resource for other areas of special need. At the height of my listserv adventures, I was getting more than 2,000 emails a day. This was great. I learned so much, felt so truly connected to the font of information that the families of children with special needs offered.

I wanted to find a way to tap into this resource that parents provided. I knew from past experience that communication between families of children with special needs and those in their support network (professionals, extended family, friends, the community) was not always positive. I believed that this resource that parents of children with special needs offered could allow those of us in their support network to meet their needs in more meaningful and successful ways. I developed an interview format to address the many areas of life with a child with special needs that parents could share, so that readers could get a sense of every aspect of the lives of these families. Over the next two years, I collected responses from hundreds of parents and caregivers of children with special needs. I found them to be the true experts.

Living in My Skin is the culmination of those two years of interviews with parents of children who have special needs. The parents that participated in this project repeatedly shared experiences that revealed that not only professionals, but family members, friends, communities and churches just "don't get it" and "haven't a clue" about the special needs that parents end up having as a result of parenting a child with special needs. As a result, these groups (the very groups that should be the primary supporters for families who have children with special needs) are unable to connect with families of children with special needs in supportive ways. Many times families become isolated and discouraged as a result.

In one of my interviews, Cherrie Ward, the parent of a 13 year old boy with attention deficit disorder, conduct disorder, and oppositional defiant disorder related to me "even my family and boyfriend do not fully comprehend my needs. They don't live in this skin…." She was expressing the loneliness and isolation that comes from experiencing a life-changing and intense parenting experience, one that no one in her support environment could understand. Many parents throughout this project expressed similar feelings.

I came to see that so little of what we can clinically offer to families has real relevance to their needs. I believe that this is because we do not understand the reality of parenting a child with special needs and the impact this has on the family. I also believe that our "professional demeanor" can result in miscommunication when we meet with families. Parents can only approach this exchange from a very personal, emotional perspective, yet we enter this exchange from a clinical perspective, no matter how empathetic we are. Unless we learn to "listen with our hearts" to these families, we will never truly hear what they are wanting and needing from us, as professionals.

The purpose of the book was to provide extended family, friends, professionals, and communities with the perspectives of parents who have a child with special needs. It is not meant to represent every perspective; indeed, each parent perspective is unique, based on the family system, supports, strengths, and needs of the parent and child. But it is my hope that this book will provide increased insights; more importantly, I hope that it will provide a catalyst for discussion, sharing and communication between these groups and the families of children with special needs.

Many of the parents who participated in the project expressed a desire to read the responses of other parents. My final wish is that this book will provide the validation, resources, strength and wisdom that come when shared experiences enhance these parents' ability to feel the powerful connection they share with other parents who have children with special needs.

What are the more difficult aspects for parents raising children with special needs?

Lori Hickman: I think one of the most difficult aspects can be the isolation and discouragement I described above. Parents do not often receive the level of support they need, and are not usually able to connect with others who are "going through the same thing". They spend much of their time learning about their child's special needs, advocating for their child, and grappling with issues about the future that those of us who do not have children with special needs do not have to face. But every family is different, so the challenges they find the hardest to deal with will also be different from any other family's.

What did you learn from writing "Living in My Skin"?

Lori Hickman: I learned how little I know. Fortunately, every parent and child I meet teaches me new things. I learned to listen with my heart.

Who do you think will find this book useful?

Lori Hickman: I have found that the people who really need to read the book are professionals: the physicians, speech-language pathologists, educators, physical therapists, administrators, and insurance companies, etc. Every person in those groups who has read the book has told me they were moved and changed by it.

The people who really want to read the book are parent of children with special needs. They tell me it is a real validation, a coming together of kindred spirits for them. They advocate for their child by sharing the book with the professionals and other people in their life as a means of helping them understand the realities of loving a child with special needs.

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