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It’s easy to see how difficult and frustrating a vacation could be when
it also includes providing care for a special needs child or adult.
During our regional Muscular Dystrophy and diabetes camps, I had
opportunities to speak to parents, siblings, and spouses of those with
disabilities and chronic illnesses. They were always grateful for the
vacation away from their busy caregiver lives as a result of our camp
based care. They knew we provided a safe and fun experience during the
week long camp, but a lot of them returned anxious instead of relaxed,
as they reassumed caregiver roles.
Sometimes I heard them express feelings of guilt for not taking their
special kids along on the family vacation. It’s really hard to imagine
providing 24-7 care for a disabled person, if you have never done so,
and believe me, these families deserved whatever away time they could
get. Regardless of their deserving status, some still felt guilt. They
often explained not taking everyone on the family trip made them feel as
if they were deserting the one who need them the most. As they departed,
I reminded them that every parent felt similar emotions when leaving
their kids at summer camp. I also reminded them that sometimes our
campers needed a rest from their caregivers.
Once returning fresh from vacation, most of these families related
their desire to take their special one on a second vacation at a later
date. Quite a few of the parents shared suggestions on just how to do
so. Over the years I’ve collected all I could remember and now I offered
them as suggestions on how to have great vacations with special needs
persons. Here are a few of those valuable common sense tips:
- Plan at least one month in advance by making reservations at
hotels, campgrounds, restaurants, amusement parks, airlines, and car
rental agencies. By explaining your special needs this far in
advance, most companies will do everything they can to help improve
your trip experience. You may be able to book first floor rooms next
to wheelchair ramps, have walk-in shower access in handicapped
rooms, and get access to refrigerators and microwaves. When
traveling by air, bus, or train, special seating may be available.
If you need oxygen, the airline will make arrangements for a fee.
- Buy a grip type bag or backpack to keep stocked with essential
spare medical supplies and medications. This makes it easy to grab
on the run, carry separately in the car, on a bus, train or airplane
and helps avoid the panic that occurs when supplies are not readily
available. Of course, you should keep your regular supplies in
luggage or durable containers. Since our children are diabetic, we
found that fishing tackle boxes work well for syringes, lancets, and
insulin supplies. These make good carry on items for airplanes,
trains, and buses.
- Consider “Hiring” a babysitting person to go on trips with you.
Most 16 to 18 year olds would be willing to learn how to help with
special needs care, just to get to go to the beach with you. You
could offer them a little spending money along with their room and
meals in return for their help. Of course allow for them to have
some free designated fun time.
- Contact the local chapter of your special needs association in
advance and see if they offer services in your vacation area. You
may be surprised at the support systems in place in major resort
areas like Orlando, Myrtle Beach, Los Angeles, Las Vegas, Atlanta,
and Dallas.
- Since most special care persons are anxious when away from home,
you should plan ways to decrease their stress. This may mean taking
along toys, pillows, blankets, clothing or other objects that
provide security. The mother of one of our cerebral palsy patients
carries his Buzz Lightyear sheets and pillowcases with them on all
trips.
- Plan for rest periods in advance. Special needs persons seem to
travel better with scheduled rest stops and are able to tolerate
longer away from home stays when they get adequate rest. If they
take a nap at home between 2 and 3 in the afternoon, then you should
try to keep that routine.
- Arrange to rent or borrow a van or larger vehicle so that you
have more space for seating and luggage. Special needs persons tire
more rapidly when riding in cramped spaces. They will travel easier
with headphones playing their favorite music or another distraction
that helps pass time without constant attendance from you.
- Call ahead to restaurants and grocery stores for special foods,
so that upset stomachs are kept to a minimum. Plan to have some
eat-in nights so that foods served will be consistent with those at
home and hopefully prevent gastric or bowel distress.
- Check with your doctor to get names of doctors and pharmacies in
your vacation area that may be of help in times of emergency. When
you need an enema or incontinence supplies at two AM, it’s not the
time to be hunting for an all night store. Don’t forget the
sunscreen, wide brimmed hats, and heat rash cream.
- Plan to have fun. So many things must be done to go on this type
of vacation that a lot of families forget to have fun once there. If
you don’t have fun, then you’ll dread doing it again in the future
and your special needs person will dread it worse of all.
Taking a special person on a family vacation requires good planning
and a little creativity, but the joys of having a fun family vacation
should outweigh the effort.
If you have suggestions, please share them with us. Hope you have a
great vacation experience!
Dr. Frank |
