“You should go!”
I was on the phone with a friend, because there was no texting or Facebook. She was saying how some of our friends were spending a long weekend out in the wine country of Sonoma.
“Go!” she said.
So we did. In a matter of a few weeks’ time, we found a place to stay, got plane tickets, boarded the dogs, and off we went. One of the best trips we ever had. Notice, I didn’t mention kids, because we didn’t have any yet.
Special Needs Travel
Fast forward 10 or 15 years, and when I was planning a trip to DC with my friend Blake, she said to me, “I love your Type A Personality. You can plan all my trips.” What prompted that comment was that I had a printed walking map of DC, and on it, I had marked where restrooms and affordable eating and quiet places are.
With a disabled child, I plan ahead and know where all the bathrooms are. But, you know what? No regrets. Travel is different, but we still travel.
I know I’ve told this anecdote several times, but when we first got Kevin’s diagnosis, one bit of advice that our geneticist gave us was to try to live as normal life as possible. Specifically, she said not to give up vacations and recreation time for fear of our child missing therapies and maybe not progressing.
I actually majored in Recreation (no, really) in college so I do know the value of recreation, downtime, and fun and how necessary it is for personal growth.
And, I can also say with confidence is that I don’t have one regret, one ‘terrible’ memory, or one thought of “Jeez, that is a trip we should have skipped!” And I am so glad that he is a part of all the special memories we have.
So what have been some of the keys to our success? I’ll share!
- Local hospitals or medical centers-We have traveled to some very remote areas. There’s not even a CVS for hundreds of miles (so much for the Minute Clinics!). But if there is an emergency, where will you go? Do your research online ahead of time and know where to go. Find out if they take your insurance.
- Have plenty of medications-Or the availability of refills. Many insurance companies only allow you to refill prescriptions every 30 or 90 days. Double-check when yours will run out and make sure you have enough to get you through the vacation.
- Consider travel insurance-If your child is medically fragile or medically complex, you should consider travel insurance. If you have planned a very expensive vacation, probably with non-refundable plane tickets, what will you do if your child gets sick and cannot go? Travel insurance will protect you if that happens. Sure, if you don’t need it, it seems like a waste of money. But generally, it’s a small percentage of the cost of the trip. And you’d be surprised at the number of families I know who have benefited from it, including my own!
- Call your medical insurance company-Imagine this, something happens and you find yourself at the doctor or ER while on vacation. Even worse, you’re in the middle of a stressful moment, trying to get it resolved, only to be told by the receptionist that you’ve been declined because you are out of network. Ask your insurance company what the policy is, and what the procedure is should something happen while you are away. Ask them to put a note in your file where you will be and the dates. Find out if they will require referrals.
- Call your child’s pediatrician-Let them know where you will be, and ask what the procedure is if you need a referral in a hurry.
- Be strategic in choosing your lodging– I look at hotel restaurants and their menus. I check if there will be a mini-market or like a CVS or Walgreens nearby. If your child has food allergies or other issues (you need Ensure, something like that) you want to make sure you know where to get it.
- Bring what you need-Social stories, toys, devices, fidgets, or comfort items. Bring plenty!
- Adjust your expectations to realistic. I hate putting this one down because automatically everyone thinks I mean “lower” your expectations. I don’t mean that. But you do have to be realistic or everyone will be frustrated and disappointed. What I mean is this. Just like you do every day, you make accommodations for your child. For example, if you know that your child cannot ride in a car for 12 hours, don’t force them to. Break the drive up into two days and stay overnight someplace. If that means your overall stay at your destination is one day shorter, so be it. To me, having a happy child that is adjusting well to the changes is better than one extra day at a location, with a child who is having tantrums and stressing out all the other family members. Set realistic goals.
- Remember that your child is exhibiting typical and age-appropriate behavior too. Talk to any family that does not have children with special needs that have gone to Disney World. They will tell you that their kids got tired and cranky. And that the parents pushed them past their limits and it was a disaster. Typical children have meltdowns and tantrums when they are pushed too far. So don’t expect any less from your child with disabilities. You can try new, exotic foods and pretend you’re Andrew Zimmern, just don’t expect your child to if they don’t try new things at home.
- Keep the daily routine as much as possible. This may require research beforehand but is worth it. Sleeping, eating, all that stuff. Keep it to your normal routine. One trip to NY that backfired was trying to get Kevin to stay up and watch the fireworks. I don’t know why I ever thought (see Tip #1) that keeping him up until 9:30 or 10:00 at night would work. He’s never been awake that late HIS ENTIRE LIFE. Why did I think that this particular day would be different? Of course, he had a meltdown and I ended up taking him back to our hotel room. If your child needs comfortable, casual clothing, bring that. Don’t all of a sudden bring nice, dressy things because you want the pictures to be nice. All you end up with is a bunch of photos with your sensory kid grimacing because he hates the way the clothes feel on him. Bowel movements can be huge issues with our kids. Many of them have GI disorders. Hey, if you have to be in your hotel room at a certain time of day, so be it.
- Predict, prepare and prevent. Do as much research you can ahead of time. Find out what the food is going to be like, what is the noise level like, what are the crowds like, wait times for attractions, and so on. Search online, call ahead, do whatever you can. Ask about what accommodations you’ll need and if they have them available. Bring whatever you need to bring as far as food. Pay the extra to have a larger room with a kitchenette or microwave. Prepare your child. Talk about where you’re going, show pictures, movies, or whatever else you can find. Allow them to have input as appropriate, for things they want to do and see. Think back to other disasters you’ve had while traveling or in public, and think about what the precipitating events were. Chances are, many of them can be prevented. I know when it happens to us, I think “I really knew that…why didn’t I…?” Think of what could possibly happen that would put a damper on your trip. Plan ahead. Food, medications, special clothing, special items. Plan ahead for smooth sailing. Call your hotel, arrange for food, quiet, whatever it takes.
- Use whatever is available to you and ignore the stares. Sometimes easier said than done. I’ve gotten that “look” sometimes as I park in the handicapped spot; that look that I “don’t look handicapped.” Yeah, whatever. Anytime you want to tag along with me for a day, you can. Whether it be preferred parking, preferred admission, beach wheelchairs, freebies, or discounts. Whatever it is, use it if you got it! Noise annoys Kevin. So he wears sound-blocking headphones. Stare at him all you want. That’s a better alternative than him melting down on me because he can’t take any more noise. Does your teen or adult child with special needs carry a doll or other comfort item that may not be age-appropriate? Well, you can try to change it, but for me, I’d rather have my kid just be comfortable in a new place, even if people are staring.
- Travel in the off-season or less crowded times. I now regularly pull my kids out of school to travel and have no intentions of stopping any time soon. When other kids are in school, vacation spots are less crowded, and we need that. Kevin doesn’t do well with big crowds and waiting in line, this is an accommodation he needs. I have done several posts on finding the therapeutic value in recreational and travel activities because there is value. Even if the skill they are working on is “applying previously learned skills across all environments,” that is a very important skill. Having new experiences, adjusting to new places, and transitions. These are all things our kids usually need to work on.
- Look for Disability Friendly Spots. Thankfully, accessible travel has improved quite a bit in the past few years. Some places like Letchworth State Park in NY even have autism friendly trails. Autism Friendly amusement parks like Sesame Place are popping up everywhere. So, do your research online when picking a spot.
- Relax and enjoy! Know that you have prepared for the worst and expect the best. You’ve done all you can, so relax and enjoy your vacation, knowing that you are prepared.
Traveling with a child with disabilities can be done and the entire family can have fun.
But just like your child may need accommodations to get through day-to-day life and school at home, they may need accommodations when traveling.
The key is just to be prepared.