Over the years, family and friends has asked us many times “how do you do it?” What they really want to know is how my wife Kathy and I have been able to withstand the stress and strain of parenting a special needs child for two decades—while preserving our own intimate relationship.
Our secret is no secret at all. It’s called Respite Care. And we have incorporated it as part of our overall caregiving strategy. We care for Melissa … and we care for ourselves.
Respite is temporary care of a child or individual with a disability that allows a primary caregiver to get a break from their “duties”. Research has demonstrated that respite can have a significant positive impact in the lives of families who have disabled children. By using respite, non-affected family members can participate in social activities that then increase their social well-being. And those with a balanced social life have stronger family relations (Cowen & Reed, 2002).
Respite can come in many forms. When Melissa was very young, we were fortunate to have a live-in nanny who provided care while Kathy went back to work. Some parents might feel that they are abandoning their special needs child if they return to work, but we found this to be excellent respite for Kathy. She was able to leave Melissa in trusted capable hands, in the safe, familiar surroundings of our home, and refocus her mind and energy on her job for eight or nine hours per day. When she arrived home, her battery was re-charged and she resumed her primary role as Melissa’s mom.
Our marriage was able to sustain the stress and strain of special needs parenting because we integrated respite care into our relationship. Once per week we planned a “date night”. Our date could be as simple as dinner and a movie. Other times we might head over to a friend’s house to “hang out” away from the noise, confusion and stress of our daily routine. And sometimes we just will hop in the car and go for a quiet ride around town, stopping at our favorite drive-in for a sweet treat.
And going out as a couple wasn’t our only salvation. We also needed our own time. There was “girls night out” where Kathy spent quality time with her good friends. And I had the chance to go on golf outings or hang out with by buddies working on cars or watching a ball game.
Whether it was together or with good friends, the point was that we were able to “escape” the responsibilities of daily care-giving. We were able to retain our individuality while we strengthened our marriage bond. Having this time together we were able to open up to each other … and share our personal struggles and fears. During these dates, we planned for our own future as well as Melissa’s. It helped keep us grounded in reality and reinforced our “team” approach toward parenting. It helped to keep our love alive!
Yes, I know what you are thinking. Finding a respite-care provider is a challenge. And the more complex the care-giving, the more difficult it is to find someone. And there is the fear that the individual will not provide the same level of care that you do. To this I can only say … don’t give up!
Here in Minnesota, social services agencies provide respite care providers. Churches are another great place to find caring, competent people who are anxious to help. And we even turned to teachers and teacher-aides who knew Melissa from school and who wanted to make some extra money.
Over the years we have had MANY respite-care givers. Some were great, some not so much. When we found great ones, we went out of our way to nurture a relationship with them. Many of these people remain good friends to this day, even though it has been many years since they cared for Melissa. That’s because they have become an extension of our family.
If you don’t have respite care, make it your 2011 New Year’s Resolution to find a provider and put a “date night” on your schedule. You’ll be glad you did.
PEACE