"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.
Fast forward 10 or 15 years, and when I was planning a trip last month 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 actually had a printed walking map of DC, and on it I had marked where restrooms and affordable eating and quite places are. I'm boring. No more jetting off to California on a whim...now with a special needs 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, down time 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!
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 you will be frustrated and disappointed. What I mean is--just like you do every day, you make accommodations for your child with special needs. 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 some place. 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.
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 has gone to Disney World. They will tell you that many times, the children got tired, cranky, 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 special needs.You can try new, exotic foods and pretend you're Anthony Bourdain, 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 part of our recent trip to NY that backfired--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? Who knows. But 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 that 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...?"
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, freebies, discounts...whatever it is, use it if you got it! My child is annoyed by noise sometimes and wears sound-blocking headphones. Stare at him all you want. To me, 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 I 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, transitions...these are all things our kids usually need to work on.
Traveling with a child with special needs can be done and the entire family can have fun. But just like your child needs special accommodations to get through day-to-day life and school at home, they will need accommodations when traveling. The key is just to be prepared.