It’s a New Year and a time for resolutions. All parents and caregivers face some level of stress in managing their households. In addition to the “typical” family tasks, families with children (including adult children) with I/DD, have additional responsibilities. Researchers at Boston Children’s Hospital, Rand Corp., and University of Southern California released a report in late December stating that families with children with special health care needs provide 1.5 billion hours of care each year to their children with chronic illnesses or disabilities. (https://news.usc.edu/114518/caring-for-special-needs-children-at-home-brings-high-cost/) The study, which analyzed government-collected data (https://www.cdc.gov/nchs/slaits/cshcn.htm), determined that these hours of care would cost a total of $36 billion if performed by home health workers.
Stress can be caused by having too many tasks during the day, the inability to find support staff, or a lack of funding for respite. But stress can come from other factors such as seeing one’s child isolated or deprived of opportunities.
The challenge for each parent or caregiver is finding a way to strive for positive outcomes for themselves and their family without giving in to stress. I know of many parents who have shown the ability to juggle these responsibilities. They help their family member succeed while maintaining successful jobs and family lives. I see them on my Board of Directors, volunteers in Operation House Call, and other settings.
The traits that I see in these family members include passion, resolve, emotional intelligence, caring, and self-awareness. In addition, they have a willingness to take time to evaluate their lives and routines. This includes taking an inventory of how well each family member is doing and the various responsibilities that exist.
Families find ways to break through the stressful situations and develop better outcomes. These examples focus upon the individual with disability’s needs but changes may be needed in one’s position at work, attending classes so that a better position can be obtained, etc.
In the book Knowing Jesse: A Mother’s Story of Grief, Grace, and Everyday Bliss, Marianne Leone describes how her son would come home dejected after he began his inclusive class experience, something for which she had advocated. Jesse didn’t want to go to school and he would cry. After obtaining no assistance from the class personnel about this change in his personality, she sent her son’s nanny to “help” during the school day. The nanny discovered that both the teacher and the aide devalued Jesse, questioned the value of Marianne’s advocacy, and said negative things about Jesse, which he could hear. Because Jesse couldn’t verbally communicate, they assumed he wouldn’t understand the negative comments. Marianne didn’t give in to the stress and pain; she re-grouped and developed a plan. As a result, she was able to make changes that had a positive outcome for her son and her family.
Another family whose son was in his 20s, realized that his work and day program wasn’t going very well. Their son wasn’t receiving what he really needed. The parents took the time to identify specifics and asked the agency to work with them but to no avail. As a result they proceeded to explore other service providers, finding one that would meet his needs.
At each stage of life whether for a young child, adult or combination of older parent and sibling with a disability, there are demands and challenges that need to be met. We can give in to the stress and give up; or we can gain strength by stepping back and evaluating the situation.
Think about how you can make your life better regardless of the stress that challenges you.
- Take inventory. What are the areas you feel good about? What are areas that are bothering you?
- Talk it over with your partner, a friend, extended family member, and people having similar experiences.
- Be aware of life stages so you can plan ahead. Don’t assume things will take care of themselves as schools change or adult life begins for your loved one.
- Be in touch with your own changes as each year goes on. What was easy to do in your 40s may not be as easy when you get older!
- Most of all, remember although your experience may be different due to additional challenges, your family is as “typical” and as valued as any other.
Starting in mid-January we’ll have posts on Facebook on specific topics in this area. We encourage you to share your ideas and strategies, as well as what inspired you on your journey.