PARENTING:
Find a Sitter, Catch a Break

by Kimberely Sullivan

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 Live

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.

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”.)

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

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.

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.

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.

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); 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.

PARENTING:
Keeping Teens Busy
in the Summer

by Donna G. Albrecht

The summer before our daughter Abby’s senior year in high school, my husband and I saw to it that she had all the appropriate activities: We visited colleges, caught up on medical appointments and made sure she prepared for her SATs. Interesting, but not exactly fun. .

For fun, there was Katherine. She was the first — and only — respite worker who arrived on a motorcycle, wearing a short leather skirt, with hair of a color not known in nature. Oh, and her other job was as a DJ in a Marine bar. She was only a few years older than Abby, who has spinal muscular atrophy. They became friends and took my old van out for adventures.

Having a college-age caregiver in the summer months can be a real treat for a teen with a neuromuscular disease. Kirsten Pollick, a neuropsychologist in Springfield, Mo., specializing in working with children and teens, understands this need both as a professional and as a former teen who was different from her peers.

Pollick, who has limb-girdle muscular dystrophy, adds that of course the caregiver “must be responsible enough to understand this is a serious job.”

How do you judge responsibility in a wild-haired motorcycle chick? For one, Katherine was sent by a licensed respite care agency, which presumably had done some checking. We also saw her driver’s license and insurance card. We took time to get to know her before letting her and Abby take off. (It also helped that our van had a distinctive paint job and if they did anything stupid, someone would probably call me!)

Summers are a special time for teens, and teens with neuromuscular disease are no different. However, parents of teens with disabilities have many concerns to address to ensure both a fun and safe summer.

Camp Crazy

When Pollick was a teen, she loved going to a Russian-language camp in the summer. Depending on your child’s abilities and interests, there are likely to be special-interest camps that offer new experiences with new friends and enhance independence skills.

Of course, going to MDA summer camp is a great getaway. Beth McPheron of Louisville, Ky., raves that her son Drew, 14, who has Duchenne muscular dystrophy, “loves MDA camp — hanging out with guys his own age and guy counselors, and hanging with kids who don’t ask questions about his chair.”

Check out other camps too, such as church/synagogue camps, Scout camps — even special-interest day camps offered through community recreation departments or local schools. Investigate the camp thoroughly to ensure your child can function there and that counselors can handle any physical needs.

For a list of camps across the country that cater to kids with disabilities, check out www.kidscamps.com/special_needs/physical_disability.html.

Do Some Work

Sounds a bit crazy, doesn’t it? But there are a surprising number of things that even a teen with a substantial disability can do to gain experience or even make money. (Tip: Make sure additional earnings won’t endanger any income-based assistance your family receives.)

Talk with your high school teen about the kind of work he or she would like to do, and consider any special interests they could explore through a job, a summer internship or volunteer work.

Animal lovers should check with the local animal shelter for volunteer opportunities. A teen who loves history or acting could become a docent at a historical site or museum. A voracious reader might check with the local library about offering a regular story hour for children.

Many communities have volunteer centers that match willing workers with fascinating opportunities. And often, opportunities become available simply by asking at the place where you’d like to work.

Learn Something

Don’t let summers slip away without some academic or intellectual accomplishments.

Use summer time to learn something interesting or work on mastering new technology.

Last summer, McPheron and her son made a contract of academic work Drew was expected to do every week. It wasn’t time-consuming — just two hours a week of educational software, two hours of reading and one hour of training his computer for Dragon Naturally Speaking, which he uses to dictate his assignments.

While it may not sound like a lot, Beth proudly states, “Drew is the only kid in the county who is successfully using the Dragon Naturally Speaking software!”

Home Alone

What teen doesn’t love privacy? At some point, many teens bring up the idea of being left home by themselves. For those who are ready, summer can be a great time to develop these independence skills.

Pollick says parents must approach this idea on an individual basis. How comfortable do you feel with your teen’s ability to take care of the basics, including toileting, answering the phone, getting food and responding to an emergency?

If you believe that with the proper supports your teen sometimes could stay home alone, start slowly. The first few times, simply go outside to garden. Next, try a quick run to the grocery store.

Each step should build on the one before. If your teen doesn’t handle a step well, back up and practice it more before moving forward. Be sure your child always can reach you immediately and can access 911.

Besides the physical elements, a general guideline for staying home alone is whether children can handle “RULES.”
.

R:

Your RULES are for your child’s safety. Teens must understand and abide by house rules about friends, chores, computer use, etc.

Finding young adult caregivers closer to your teen’s age makes activities more lively.

U:

They must be UNAFRAID. A little nervousness is OK, but if they’re truly afraid, it can be very traumatic.

L:

LEARN telephone- and door-answering techniques to avoid unsafe situations. Practice role-playing games until this is second nature.

E:

EMERGENCY responses must be automatic and appropriate. Your teen needs to be able to keep calm, know whom to call, have more than one way out of the building, and give directions to your home.

S:

SELF-CARE is important. Can your teen behave in a way that shows care for his or her physical and emotional well-being? For example, eating all the ice cream in the house or checking porn sites on the Web are out.

Remember, the things your teen does this summer will make memories that last a lifetime — so don’t waste a moment of this precious time!

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