Focus on Friendship: Respite Care…Making Friends and Keeping Friends

by Mary Ann E. McGuirk

Parents often consider respite as a time to run errands and get chores done. But while household tasks and errands need to be completed, spending time with friends and family is important too. Parents who maintain a support network are more inclined to enjoy a healthy lifestyle. In a previous newsletter written by Mindy Payne, she listed results from Search Institute (www.search-institute.org/families) which indicate that while parents may not often turn to others for help or advice, there are many reasons why seeking support from others is beneficial:

• Parents who have access to and seek the support of others tend to be warm and affectionate toward their children.
• Parents with large social networks tend to be more involved in their children’s education, which results in better school performance among their children.
• Parents who have large social networks tend to have children with larger social networks.
• Likewise, parents who report feeling lonely tend to have children who are also lonely.

Respite time has different meanings for caregivers and parents. For one parent, it may be used to spend quality time with another child in the family. For another, it might be a trip to a favorite coffee shop to relax and read the newspaper. Read on to learn how four local mothers make the most of respite care for their children.

Robbie: We use respite a lot to get together with friends and family. If there is a large family gathering, we sometimes will have a respite provider come and get Hannah halfway through the family event and take her out to a movie or to the mall (something more quiet and just for her). I will also get respite providers if I have a meeting to attend in the evenings. We have also used respite for weekends away to visit family in Maryland. This usually requires a lot of coordination. I get 2 and/or sometimes 3 people to cover the entire weekend.

I also like to get respite providers to involve our daughter in the community. She enjoys activities such as bowling, movies, hiking and going to the museum. It makes a special day for her and I can get some personal things done for myself.

Kelly: There are many things in my life to be thankful for: my family, my friends, my health, fleece pajamas, an extra large latte, a second extra large latte…the list is quite long! I am humbled by so many blessings and I would be remiss if I didn't mention one of the biggest: respite care.

A couple of years ago, we were contacted by the Watson Carebreak Program. (I can't remember the day that they called, but I'm pretty sure I was probably still in sweatpants, unshowered, with dishes in the sink, children bickering in the background, and a dog wandering the neighborhood.) All I remember was that I was so overwhelmingly thankful that help was on the way.

Fast forward to today! Our current volunteer is a local college student who comes almost every Friday night, and as far as I'm concerned, she might as well be Mary Poppins. Our three boys adore her! She watches movies, plays games, does art projects, and even bakes with them. Most importantly, her presence and interaction with my kids give ME the peace of mind and freedom to leave the house. We make sure they're happily stocked with pizza, videos…. whatever it takes…… then their Dad and me ……. WE GO OUT!

Everyone uses respite in whatever way meets their family's needs best. My husband and I had kids pretty young. Three boys all in a row. I was so busy with diaper-changing and midnight feedings that I honestly can't even remember my 20's. Now that our guys are a little older, I have come to realize that sometimes what I really NEED is to be a GROWN-UP. I need that mental downtime to read books, enjoy a night out with the girls once in a while, and to finish one stinkin' sentence in my own head without being interrupted by a scripted scene from Spongebob that I have heard one thousand times!

In addition to "me time," I need time with my husband. We all know the stresses that having a child with special needs put on a marriage. Heck, we all know the stresses marriage itself puts on a marriage!!! Having the ability to go out on a regular basis, catch up with each other, have some fun….. it's so valuable to us….. and in the end, it's valuable to our kids too.

Our date nights vary from week to week. We go out to eat, browse book stores, sit and chat over coffee, and sometimes catch a movie. Other times we run errands, get some shopping done, or roam the mall. And on a few occasions we have been able to orchestrate a double date with friends, which is soooo much fun! No matter what we choose to do, I eagerly look forward to Friday nights with my man!

Infinite thanks to our dear volunteer, Kara, who means the world to us. Truly. And thanks to Mary Jo and the staff at the Carebreak Program who allow us this privilege every week!

Carol: Respite time…I use it for different reasons, which can include spending time with my other children, outings with friends or spouse, reading, exercising, medical appointments and of course the biggie, travel.

Parents of kids with disabilities must spend time on themselves as well, not just catching up with life. I meet with a group, Mom’s Night Out, to connect, commiserate, network and just have fun. Last month, we enjoyed the services of a masseuse and manicurist, shared some wine and learned some tips for preparing sushi!

My son’s caregiver has been with us for a long time. The first few years she was with us, I used to say that if she didn’t work for me, we would have been best friends. I really like her. However, I feel that you need to draw a line between employee and employer. We are not co-workers. In the work environment, I think you can be casual and close as well as respectful of each other’s positions. I am especially careful to be respectful of her and what she does for me, my family, and my son. I always make a point of saying thank you, especially after all these years.

Outside of the work environment, I think you can blur these lines and then it gets difficult to return to the work environment. Yes…we do get together outside of work (for a birthday party, etc.) but I think it is sometimes uncomfortable when we are together. She cannot complain about her job to me and I can’t complain about my life. Isn’t that what friends do when they get together? She needs respite from me and I from her. I do, however, often invite my caregivers’ children to go swimming, or attend an event such as the circus, concert or theatre with my son. The more the merrier and it is important for their children to know what the parent does and make them aware early on that all people are not the same.

Mary Ann: As a mom of a daughter with a disability, I know that I should take care of myself, spend time with my husband and stay connected with friends and my other children. There are times when I feel this may seem selfish, but if attention is not spent on other relationships and leisure activities, what good am I if my focus is always on our child with a disability? Life will never be easy, but it helps that we have a strong network of family, friends and caregivers who are willing and happy to help out.

Recently, when I was gathering photos for our daughter’s picture board to be displayed at her high school graduation party, I not only wanted the photos to represent the important milestones in her life, but I wanted to highlight those individuals who encouraged her along the way. Of course, family and friends were her strongest supporters. There were also three compassionate women, Mary, Cindy and Heidi, who have been excellent respite providers, and at times…psychologists, comedians, and confidantes.

When we were looking for people to provide respite services, it was important to not only find trustworthy people to work with our daughter, but at the same time, know something about her disability and work on her goals, both at home and in the community. I thought a teacher would be the perfect choice, so I called the local universities and school districts to see if they knew of anyone who might want to work in the summer or on weekends and some evenings. That is how our family initially connected with Mary, Cindy and Heidi. Caregivers usually come and go, but when that caregiver becomes a life-long friend, it is truly something special. Our friendship does not take a lot of work, just a lot of care and respect for the roles we both play. As parents, it is important to get support, but it is also important to our happiness that we give support to Nicole’s caregivers.

As parents of children with disabilities, we may feel “consumed” by the disability. Asking for assistance can be difficult and humbling, but it lets others know they are needed and valued.