Finding Wonderful Horizons: Improving Children’s Quality of Life
Improving Children’s Quality of Life
Everyone has the right to the best possible quality of life. Parents dream that their children will grow up to be happy, healthy, and fully engaged in life. When their children have disabilities and/or behavioral challenges, it may feel like opportunities are limited and it may even be necessary to settle for less. It is important, however, to stay focused on a positive vision and continually work in that direction. It is easy to lose sight of this vision when managing the day to day demands of parenting. This article will define quality of life, provide examples of wonderful experiences, and share suggestions to maximize outcomes.
What is Quality of Life?
It is important for parents to reflect on each of these areas, identifying strengths and areas in need of enhancement. The PBS Quality of Life Questionnaire was developed by the Florida APBS Network to help identify quality of life goals and specific skills that will make people need to achieve them.
Stories of Lifestyle Change
Maya. Maya wasn’t the average girl. Following a diagnosis of autism, her life took a sad but common course of events – friends wouldn’t return after one playdate, she became isolated at school, seemed depressed and withdrawn, and behavioral challenges emerged. One day, Maya made a friend named Charlotte at Horse Camp. Horses were Maya’s special interest.
As the weeks passed -after playdates, sleepovers and trips away were shared – Maya transformed so significantly that her family separated her life into BC & AC (Before Charlotte and After Charlotte). At night ‘BC’ if there was a noise, Maya was unhappy and would say, “Shhhh, it’s bed time and the rules say quiet”, but ‘AC’ she would giggle uproariously with Charlotte at fart jokes.
The fuller story of Maya and her friend Charlotte may be found in Horse of a Different Color in the This American Life podcast series. The story shows the transformational potential of a genuine, freely-given friendship on a person’s quality of life.
Callum. Callum’s first school principal said he’d never get a job. Callum recently left school and now is working five days a week. His mother, Cheryl, said that it has always been important to hold on to a picture of his quality of life. For Callum, who really needs to be occupied, this means work. The pride he takes in completing work can be seen in his smile.
Callum’s quality of life also means trusting relationships and welcoming community. His support workers recently took him to see Bohemian Rhapsody at the cinema and Callum loved singing along. ‘We never had considered taking him’ Cheryl said. It’s great that our team are willing to give things a go.’
Callum and his parents have had to work hard to overcome barriers to his quality of life. Sometimes this is the low expectations of others; on other occasions it has been learning to navigate the disability support system. The behavior specialist, other professionals, and our family go in as ‘Team Callum’ all with a shared idea of what is best for him.
Building Quality Lives
Helping children create their best quality of life requires planning, setting them up for success through teaching skills and arranging environments, and as with both Maya and Callum, a certain degree of risk taking.
“Beginning with the End in Mind” (Steven Covey). We cannot help children achieve their life goals if we do not know what they are. Achieving the best quality of life begins with exploring a child’s preferences and dreams. For example, we want to help the child consider these questions:
- What choices do I want to make in my life?
- With whom do I like to interact and in what ways?
- What activities do I enjoy and find to be rewarding?
- In what ways would I like to contribute to this world?
- What barriers might be preventing achievement of my goals?
If a child cannot clearly communicate their desires, we must create opportunities for them to experience different events and activities and see how they respond. We can then be their voice. Person-centered planning can be an excellent process for guiding children toward their north star. There are numerous approaches to planning like the visual below.
“Road to Success is Under Construction” (Lilly Tomlin). To help children participate in situations that will enhance their quality of life, we may need to orchestrate opportunities and arrange settings to promote success. For example, children may need help meeting people with similar interests, choosing community outings, arranging transportation, and/or accessing the needed resources. It may also be necessary to adapt aspects of circumstances to support their participation, considering questions such as: “What do we need to add (e.g., visual cues)?”, “What do we need to remove (e.g., excessive noise or commotion)”, or “What could we change (e.g., schedule of activities)?”
Don’t Just Give Them a Fish” (Chinese Proverb). Children with disabilities commonly need certain skills to participate fully and successfully in the activities they enjoy. Before just “throwing them in the deep end”, it is important to consider what skills are required in certain activities. A child may have some skills already, whereas others need to be taught. Skills may be taught by explaining, showing, practicing and providing feedback either before or during the activities.
“A Daring Adventure or Nothing” (Helen Keller). Building quality lives requires a certain level of risk taking. Exposing children to new places and people can be stressful, but is critical to helping them live full lives. It is important to provide the supports necessary for success and empower children with skills to control the process, communicate their needs and problem-solve. It is equally important for parents to be able to let go of control so they can learn from any mistakes they may make, but also succeed independently.
In the nitty gritty commotion of everyday life, it is easy to lose sight of what is most important for young people with disabilities. A healthy, happy, and productive lifestyle is a human right and should always guide person centered planning and decision making. It is important that young people are given ongoing control of this process as much as they are able and they know their team is working in their best interests. With persistence, we hope this will lead to young people finding their own wonderful horizons.
Meme Hieneman, has a Ph.D. in Special Education and is nationally certified as a behavior analyst. She has published a variety of articles, chapters, and books including “Parenting with Positive Behavior Support: A Practical Guide to Resolving Your Child’s Difficult Behavior.” In her professional career, Meme has worked with children with severe behavior problems for more than 20 years.