A Life Worth Living

As parents of special needs kids, we have a higher calling. Our responsibilities are life-long. The following is a statement of purpose for members of our organization. If you feel the same and share these values, please join us.

I will be an interpreter
I will listen with patience to ALL my child's communications, verbal or nonverbal, that give clues to his or her wants and needs. I will encourage others to do the same. I will not immediately pass judgment on negative behaviors, since behavior itself is an important form of communication for those without a voice. I will "decode" behaviors for employers, teachers and family so that my child is better understood and accepted by others.

I will be an ambassador to my child's world
In public, I will proudly provide a narration for my child, so that family and strangers alike will understand and tolerate unusual behaviors. My kind, patient words and actions will demonstrate to others that a person with Autism deserves society's kindness and respect.

I will be a strong and involved advocate
I will be actively involved in decisions about my child's living, social, education and health arrangements. I will not abdicate my most important role to anyone.

I will partner with – not battle – the caregivers in my child's life
Since Autism is a life-long disability, I recognize that long-term care is a partnership, not servitude. I will respect schedules and rules of our child's residence or day habilitation workers, and I will work together to solve behavioral issues to maximize our children's quality of life.

I will give my child a meaningful life
I will insist upon age-appropriate social activities for my child. I will lobby for dignified, productive employment or volunteer opportunities that allow my child to contribute to – and not depend upon – society.

I will not become a martyr to Autism
I will make intelligent, informed decisions about my child's adult life apart from my own. I will not hide my child from the world. I will not delay a painful decision about long-term care and living arrangements. I will plan, today, so that I can make the best choices for my son or daughter.

I will always and forever be a parent
Even though he or she is an adult, my child will ALWAYS be my primary and life-long responsibility. I will remain actively involved, and surround him or her with the gift of family, friends, meaningful work, spirituality or religion, and the right of unconditional love.

 

Draft 7-12-2011. Comments are welcome: info@ucpaa.org