Paving the transition path to help families find hope and practical advice

Jonathan Huggon

Often I hear the question directed to children, “So, what do you want to be when you grow up?” Most often the child’s response will indicate his or her greatest interests, hobbies and talents, better known as “dreams”. Children are encouraged to share their dreams and visions they have for their future. Even before a child is born parents begin dreaming and creating a vision for their baby. But when a parent is faced with raising a child with a disability or chronic illness, we can easily forget about those dreams or worse, believe that they are forever shattered.

My husband and I are the parents of three beautiful children. Our oldest son, at two weeks old, became ill with a virus. He has cerebral palsy, dependent for all his physical needs and uses a wheelchair for mobility. Jonathan can communicate in various ways. He vocalizes, uses eye gaze, body gestures answers yes or no questions and by choice selection. He also uses an augmentative communication device with the eye gaze control component.

Fourteen years ago I participated in a Massachusetts Families Organizing for Change (MFOFC) Family Leadership Series (FLS). The curriculum includes presentations on leadership, advocacy, vision and best practices. At the end of the first session, participants were asked to think about the question, “What vision do you have for your child for the next one to three years?” I went home and asked my husband the same question. We realized that our dreams for our son had been buried by the demands that came with caring for him. We soon learned that without a vision for our son’s future, there is no direction. Without direction we would never know what we were really advocating for. Considering Jonathan’s young age at the time, it was his personality and what made him happy that helped us to create a vision for him. In three years he would attend first grade in the general education classroom in his own school district.

It wasn’t until Jonathan was in the sixth grade that he finally attended a general education classroom. The advocacy has been hard work and many times wearisome, but along the journey there were experiences of victory. Jonathan has had numerous people come into his life who respect and value his abilities, most importantly, believe in his vision. Jonathan’s family continues to dream for him, but over the years the vision has become his own.

Jonathan is now eighteen years old and a senior at Taunton High School. He is learning to be more self-directed and responsible about making decisions pertaining to his own life. He uses his calendar in his communication device that has helped him learn the importance of overseeing his schedule and keeping it updated as he makes or changes plans. He wants to someday write his own music and work in the music and entertainment field. Establishing friendships and being involved in his community is important to Jonathan.

Planning for the future is supposed to be a part of every student’s education. Students who receive special education support tend to be excluded from this expectation. Prejudice and assumption of incompetence has robbed too many children from having a meaningful life. In a few years special education services for Jonathan will end. What lies ahead is uncertain. Policy for disability services needs to be developed in a way that allows individuals and their families to make choices based on the needs and interests of the individual.

When Jonathan transitions to adult services, will those services allow him to:

• make spontaneous plans for the day?
• live in his own home even if his living space is apart from his family’s main
living space?
• call his friends to make plans to get together?
• go on a vacation of his choice?
• join community groups and/or organizations?
• attend classes on composing music?
• go shopping to purchase his own clothing and/or household items?

The advocacy for my son will be a lifetime responsibility. He will always have his family to rally for him and we will continue to support his vision. His vision is something that cannot be negotiated or dismissed. The future can and will change for individuals with disabilities, but the voices of parents and caregivers need to be heard. My faith in God is where I get my strength and hope. It is my prayer that my story will act as a contribution to positive change with how services are provided to children and adults with a disability.

Dianne Huggon – August 14, 2011
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