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.
|Finding young adult caregivers closer to your teen’s age makes activities more lively.|
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.
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.
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!”
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.”
|Your RULES are for your child’s safety. Teens must understand and abide by house rules about friends, chores, computer use, etc.|
|They must be UNAFRAID. A little nervousness is OK, but if they’re truly afraid, it can be very traumatic.|
|LEARN telephone- and door-answering techniques to avoid unsafe situations. Practice role-playing games until this is second nature.|
|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.|
|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!
For another parent's perspective, see "From Where I Sit: A Perpetual Balancing Act."