It is challenging for children and families when education is mostly considered in terms of 'the typical child,' and is merely 'modified' for any child who does not fit this norm, (and approached again using a 'typical modification' approach). Many children today are living with rare and poorly understood medical conditions and disabilities. For best practice, this necessitates ongoing education on the part of service providers, and creative approaches to meeting the overall education needs of these children and their families. Also, services are sometimes very compartmentalized, with specialists within systems (and especially across systems) not being fully aware of, or in tune with, the overall experiences and unique needs or preferences of individual children and families. Even the best providers within a discipline-specific field can improve services for a child and family through collaboration with other disciplines and service systems, and especially through collaboration and communication with the family.

Q - In your own mind, is special education working in this country?  What are we doing right - and wrong?

Without being political, I would say that the current situation of special education in this country is a bit foreboding. Most special educators are well-trained and highly-motivated to be resourceful and creative and wonderful providers for children with disabilities. However, too many policies and regulations and guidelines intended to improve test results in our nation and 'leave no child behind' actually serve as educational barriers for too many children with disabilities.

	Mattie and Jennifer Stepanek with Rosalynn Carter and friends. (courtesy Rosalynn Carter Institute)

Q - Your son Mattie was such an inspiration and hero to many. How can you take what he gave to us in courage, strength and love,  and translate that into something others can embrace?

My son, Mattie, taught me that not all worthy things come from the dreams we consider, or plan, or tend to, or train for, or seek. Our dreams are really part of some bigger picture, that hopefully leads to something that matters long after any given moment, and long after each 'here and now.' No matter what we 'want to be' when we grow up, our dreams should ultimately reflect a journey that touches humanity with a gentle strength and goodness. We should always strive to make a difference in life as we touch the world with our knowledge based on academic training, and also with our wisdom and our understanding based on personal experience. Mattie taught me that in each moment of life we have the gift of choice, and therefore hope. He said that whether a given moment feels like a blessing or burden, we always have the choice of attitude, and that hope can be the attitude we choose that moves through and beyond that moment, and into each next moment.

Q - What was it about attending Maryland that made a difference for you?

Through word and action, my advisor, Dr. Paula Beckman, has consistently demonstrated her belief that 'disability' and 'education' are not conflicting realities, and that parenting children with disabilities or personally living with a disability simply necessitates creativity and perseverance and a collaborative team effort. Back in the late 1980s, I withdrew from my first doctoral program in clinical psychology at another university believing that it was not possible to successfully pursue such a rigorous academic goal, and also meet the emotional and medical needs of my children who had progressive and life-threatening disabilities.

Dr. Beckman supported me in tending to both professional and personal goals in life, and that is true of all the faculty and staff and other students in my department. It was really a balance, where we each did whateaver we needed to do in each semester. When my son was not in a medical crisis, I took classes and participated in research endeavors and demonstrated my high academic dedication and standards through quality work and performance.

When my son was in a medical crisis, my need to focus on his life and mortality was completely respected by everyone in the Department of Special Education here at the University of Maryland. I was never judged, or limited in my goals as a doctoral student or as a parent. As a result, I not only have a doctoral degree in Early Childhood Special Education, but I also have the fondest memories of my son growing up here on campus with a wonderful extended family in this department.

Q - Now that you have finished your "formal education" what are your plans for the future?

To be honest, due to the ongoing progression of my disability, I do not have set plans for my future --- but I pray on this every day. I am sure that there is a part-time job out there with my name on it, but I do not yet know what it looks like yet. Ideally, someone will soon be needing an effective motivational speaker and disability advocate in the field of education or healthcare, who does quality research and who is a skilled writer and lobbyist, but who also happens to be limited in daily on-site presence due to disability. And when that job is advertised, I will be first in the application line with my resume in hand! Until then, I am working on two books (one about the final four years of Mattie's life, and the other based on one of my most popular research-oriented speeches that addresses working with children who have life-threatening conditions), and I will continue traveling and giving speeches to any audience interested in a message of hope and peace and other things 'that really matter' in life.

University of Maryland College of Education
Department of Special Education

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