Tagged with: advocate parent with a disability raising children
I recently attended a two and a half day retreat with my friend and colleague Aldea LaParr. Aldea works and volunteers in the disability field and we see each other approximately four times a year. Aldea is the mother of three teenage boys. She owns her own web design business. Aldea also has Cerebral Palsy.
When Aldea and I first met, I would silently watch her with a strong sense of admiration and respect. Aldea is a woman who adopts resourceful and creative approaches to meet the needs of her family. She launched her own web design business in part to stay at home with her sons.
I started to look at what issues exist for parents like Aldea and I asked her directly. According to existing research and information sources like: (www.disabled world.com), “Parents with disabilities are a growing population”. Existing statistics show, “In the United States alone, more than 8 million families include at least one parent that has a disability.”[i]
I asked Aldea for her thoughts on this subject and she said “I think it is actually a hidden population.”
According to Aldea, “My family is unique because there are two people with developmental disabilities in our household. I have Cerebral Palsy with no intellectual challenges while my husband Gary has Cerebral Palsy with intellectual challenges. We live in the community without paid supports. Our combined abilities to support one another allowed us to live independently.”
“When my children were younger, I could have used some assistance handling behavior problems, (e.g. acting out). As a parent with a physical disability, I was afraid of reaching out for assistance from an agency.”
According to existing research, “parents with disabilities are relatively similar to parents without disabilities, with some notable differences, particularly in employment and income.”[ii]
Aldea notes “I did not have paid supports. I received Social Security as an income source because of my disability. I have never been deemed eligible for State disability services. I had always been independent and never really thought about needing services until my children came along.”
The Importance of Natural Supports
Aldea has managed a successful household through her use of community and natural supports. That is, seeking support from a neighbor or a co-worker versus a paid staff person. Since her children were in school, Aldea has had a natural “in” with her sons’ teachers. She made specific attempts to connect with school staff and was successful.
“Sometimes I encounter people who automatically believe that I have trouble understanding things and that I am unfit to be a parent because I have Cerebral Palsy. I went through a time when my children were acting out. As the behavior challenges became more intense, school personnel guided me to the right people and provided me with the right links and referrals. With these, I started to build relationships and supports.”
Aldea was linked with a parent advocate. The advocate was a retired Middle school principal named John. John was able to see all the positive aspects about Aldea’s family.
According to Aldea, “The relationship with John and others helped give me the comfort and ability to be honest about needing help to deal with the behaviors that were happening. Parents may not know how to ask for what they need. In my experience, a lot of parents need to learn how to become strong advocates. This happens from talking with other parents and professionals and from making the right connection. From the connection I made with John, I learned that my sons were strong-willed and that they were being typical teenagers. I could call John when I was frustrated.”
Aldea notes, “There are simple ways to support parents with disabilities. It can be as easy as neighbors checking on neighbors and parents talking to parents.”
Internet Resources for Parents with Disabilities
Based upon her experiences, Aldea LaParr developed a website to assist parents with disabilities. (http://supportparentswithdd.com).
Parents with Disabilities Online!, provides information, support and resources to parents with disabilities. (http://www.disabledparents.net/)
The Technical Assistance Center on Social Emotional Intervention for Young Children provides a number of resources on Positive Behavior Supports. (http://www.challengingbehavior.org/explore/pbs/pbs.htm)
Kerry would like to extend special thanks to Aldea LaParr. Aldea and her family reside in Lowville New York.
[i] Olkin, R., Abrams, K., Preston, P., & Kirshbaum, M. (2006). Comparison of Parents with and without Disabilities Raising Teens: Information From the NHIS and Two National Surveys. Rehabilitation Psychology, 51(1), 43-49.
[ii] Olkin, R., Abrams, K., Preston, P., & Kirshbaum, M. (2006). Comparison of Parents with and without Disabilities Raising Teens: Information From the NHIS and Two National Surveys. Rehabilitation Psychology, 51(1), 43-49.