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:

1. 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.

2. 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.

3. 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.

4. 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.

5. 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.

6. 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.

7. 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.

8. 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.

9. 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.

10. 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

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