Finding a sitter to care for the complex needs of a child with neuromuscular disease can be daunting.
There are so many things to consider. Can the sitter lift my child? Perform important functions such as suctioning? What if something happens to the wheelchair? These and hundreds more “what ifs” can make getting a sitter seem too overwhelming to attempt.
Everyone needs time to escape the pressures of parenting. Parents of disabled children need time away even more than most parents. Parents who are tired, worn out and overstressed are setting themselves up for caregiver burnout if they don’t get away on a regular basis.
Learning to leave
As the mother of a 12-year-old child with spinal muscular atrophy, I know all about caregiver burnout. In the past, other than when Adam was at MDA summer camp, my husband and I rarely went out alone together. I complained I wanted to go on a date, but honestly I didn’t think anyone else could care for Adam as well as I could. I worried he’d be lifted improperly and hurt. To me, going out was out of the question.
All this changed when Adam joined our church’s youth group, Elevate, which held events like sleepovers and picnics. The first time the group leader, Grady Root, asked if Adam could attend a sleepover in the basement of a boy’s home, I almost said no. Adam begged to go, but there was no possible way to get his power chair down the stairs and he doesn’t have a manual chair.
Grady promised to keep Adam supported and comfortable, and to take care of his needs. Our church does extensive background checks on staff and volunteers who work with children, so I felt confident letting Grady care for Adam. I demonstrated the proper way to lift and help in the bathroom, and cautioned against hurting Adam’s sensitive feet and legs. Other than those details, Adam was similar to every child there.
That first overnight, my husband, David, and I were able to get our first good night’s sleep in a very long time. The next morning, we went to pick up Adam and, miracle of miracles, he was still in one piece. No broken bones, no bruises. He’d had a great time and begged to attend again. Adam needed time away from us as much as we needed time away from him.
From that point on, I realized that I could indeed go out and enjoy some quality time with my husband.
A teen solution
Now that I was ready, how would I find a sitter “good enough” for my son? The obvious answer was a family member. Grandparents, uncles and aunts can be great for giving breaks. My husband and I felt confident that our parents could care for Adam, but there was one huge problem — they live two to three hours away.
|Youth group activities with supportive counselors offer parents and kids a break from each other. Grady Root (left) leads Elevate, a church group attended by Adam Sullivan. Photos by Kimberly Sullivan|
The next best option was to find a close friend or neighbor we trusted who felt comfortable providing care. Unfortunately, no one fit that description. But this changed when two families with teenage boys moved into our neighborhood.
Adam looked up to the teens and enjoyed “hanging out.” He spent most of the summer outside with Dan, Steve, Shersha and Heckma, as the teens played street hockey, baseball and football, and did tricks on their bicycles. They always tried to include Adam in their games.
Gradually, I let Adam stay with the boys while I ran quick errands. One afternoon Shersha even stayed with Adam while I took Shersha’s sister to the doctor. I showed Shersha the proper lifting and toileting techniques, and helped Adam go to the bathroom before I left.
Now Shersha and Heckma often watch Adam when I’m no more than a few minutes away. They never ask to be paid; they’re coming over to hang out with their friend. They also know they can come to me for help with schoolwork at any time.
Other sitter sources
What if there aren’t any suitable family members, friends or neighbors nearby?
One option in many states is respite care. Respite (which means “a short time of rest or relief”) is provided by various agencies and some churches, and often is free to qualifying families. Respite workers receive special screening and training. (See “Obtaining Respite Care.”)
Unfortunately, in some places respite waiting lists are years long. In addition, arranging for respite takes planning and paperwork, and the respite worker may not agree to care for your other children. So it’s important to have other options available.
|Hanging out with teens is a blast for younger kids. Heckma and Shersha Safi are Adam's neighbors and friends who sometimes fill in as short-term caregivers.|
Check with the agencies and professionals who work with your child to see if they maintain lists of reliable sitters, suggests Kathy Brinker, the Illinois 2004 Adaptive Physical Education Teacher of the Year, and mother of two special-needs children. Even if they don’t have official lists, specialists and teachers who know your child may know someone qualified to provide care.
Debbie King, MDA health care service coordinator for the St. Louis region, suggests contacting local colleges offering courses in physical therapy, occupational therapy, nursing, medical assisting or special education. These students enjoy working with people and have some training in caring for medical needs.
Screen and train
Carefully check out each applicant. Set up an interview and ask for references. Look for someone mature, with the physical ability to lift your child and, most important, a good rapport with your child. You want your child to look forward to having the sitter come
On-the-job training is the best, King suggests. Demonstrate how to use medical devices, lifting/transfer techniques and the care of equipment such as power chairs. Then observe while the prospective sitter tries it.
It’s also critical that the sitter understand your child’s diagnosis. For example, many muscle diseases cause respiratory complications, so cleanliness and avoiding germs is essential.
Prepare a packet of information that includes: an MDA “Facts About” booklet on your child’s diagnosis (check with your local MDA office or www.mda.org/publications); guidelines for transfer techniques; emergency procedures; contact information for you and a neighbor; the rules of your house; and your expectations for the sitter.
Go for it
Then the only thing left for you to do will be to enjoy some quality time away from your child. Once you’ve developed a relationship with a trusted sitter, you’re off to many wonderful relaxing adventures.
Services are available from national and local organizations, government-funded agencies, churches, schools and licensed nonprofit groups. Some provide in-home services; others have day programs at their own sites. Sometimes families are able to get neighbors, friends or family members certified for payment as respite providers.
Some programs are publicly funded; others are private or voluntary. Depending on the funding available, respite providers may be free, charge a flat rate, or charge a sliding scale fee based on the family’s income.
In almost all state-funded programs, eligibility is based on the child’s age, disabilities and, often, family income. Some programs provide services only to families of people in certain age groups or with specific types of disabilities.
An excellent resource is the ARCH National Respite Locator Service, a free service that searches for providers by city and state, as well as by the age and disabilities served. Visit the Web site or contact the Chapel Hill Outreach-Training Project at (919) 490-5577.
Other possibilities include contacting your state’s planning council on developmental disabilities, community mental health/mental retardation center, local chapter of MDA or The Arc, local independent living center, or Information and Referral Service.
For another parent's perspective, see "From Where I Sit: A Perpetual Balancing Act."