Ahhhh, Summer Vacation. A little R&R before the school year begins!
For many of us who have children on the autistic spectrum, long gone are the expectations of spending glorious temperate days lounging under a coconut palm in a tropical paradise while watching the kids effortlessly scoop sea critters into a bucket of brine. Understandably, some of us may decide to forego summer fun-in-the-sun getaways. Our experience has been that taking a family vacation is "just too difficult!" and these days, also too expensive. But with a little planning, family vacations need not be so stressful, and may even be joyful!
So what can we do to enjoy time together while on holiday?
First, it is important to consider where our children are in their ability to process and hold information, to evaluate their sensory needs, and to contemplate how well they are able to respond to stress (seemingly fun-filled environments can be completely overwhelming for our kids). Extensive preparation is key for all of these.
Tip #1: Focus on doing something that you know your child enjoys.
Soon after I adopted my son Neal from an orphanage in Russia, we joined my family reunion at a beach house in Delaware. When we get to the beach, it is clear that Neal is petrified of sand, of water, of anything to do with the beach. I write in my book, Now I See the Moon, that I make excuses to my family, "He doesn't know from the ocean. He comes from the Ural mountains in Siberia, for goodness' sake." Even as I defend him, I'm disappointed. I love the ocean, and I yearn to share the joy of the boundless sea with my son. Instead, we surrender, and end up spending our time on the patio of the beach house where there's a wading pool. We're joined by my mother, who was also raised in the mountains -- the Shenandoah Mountains in Virginia, and she doesn't like getting sandy.
Know what truly interests your child and plan your trip where you know he or she can be successful. Also, it is important to note that our children's ability to regulate their own emotional states is largely affected by our own. So if we are anxious, disappointed, frustrated or angry, guess who's going to feel even more so?
Tip #2: Prepare your child's sensory system. Anticipate, it makes sense!
If you decide to go somewhere you've never been with your child, or try new activities together, make the effort to really prepare (weeks before you take your trip, if possible). After the "failed" beach experience, one of my son's therapists, Shelley Cox, and I take Neal close to the ocean. Shelley takes a bucket of sand and actually brings the ocean to Neal. Slowly and compassionately we allow Neal to get acclimated. First Shelley puts sand on his feet, rubbing it gently on his skin. I then realize that the hot, scratchy sand must have been irritating to his sensitive tactile system, reflecting why he avoided walking on the sand, preferring to be carried to his beach blanket. I am even clearer that Neal's fierce preferences are not random. I better understand his world and anticipate his needs.
Today, Neal loves the surf and can't wait to jump in the waves!
Tip #3: Rehearsals for life: Practice, practice, practice!
Before we fly on an airplane with Neal, we role play everything you can imagine -- packing bags, waiting in lines, taking off his shoes and going through security lines, placing luggage under the seat, wearing a seat belt and sitting patiently. We use visuals -- we watch DVDs of airplanes, go online for pictures. We pretend play with toy airplanes, look through airplane magazines. We practice placing our hands over our ears during take-off/landing and we actually visit the airport.
If he is going to meet new people, we show him pictures and tell a story about them, letting him "meet" them first in the comfort of our home. If we are visiting family members whom he hasn't seen for a while, we show him photos of passed experiences and current photos so he can see what they look like now.
We use "social stories" to help make sense of new experiences. This provides Neal a sense of control, and diminishes his anxiety.
Tip #4: Expect the Unexpected. Go with the Flow (as if we had a choice!)
As well-prepared as Neal was for his flight, once he got to the airport, he was so excited he couldn't contain himself. At the airport, as we waited to board, Neal stared at the huge planes out the windows. I turned my head for a moment. I then heard the sound of an alarm. Neal had raced to the exit door and tried to open it so that he could go outside and be with the airplanes. He panics. People glared at him. Security raced over. "It's okay sweetheart," I told Neal, trying to comfort him. To the security guard and the concerned onlookers, what could I say? "He has autism! He just likes airplanes!"
I remember early on in our diagnosis becoming outraged at others for making what I thought were "stupid comments" about my child and his behavior. Too, I resented their judgment of how I handled unexpected situations based on Neal's reactions to circumstances. Now I understand that such reactions come from ignorance (just plain lack of knowledge). I now try to use every occasion as an opportunity to educate and sensitize others to the special needs of my very special child and others like him.
TACA (Talk About Curing Autism Now) has cards that you can present to strangers to help them understand autism.
Tip #5: Call the airline (cruise line or hotel) in advance and let them know you are traveling with a child who has special needs.
Our choice to go with the flow continued throughout the flight.
Once we boarded our flight, Neal did all that he had practiced -- but we hadn't practiced needing to go to the bathroom when there is a drink cart blocking the aisle. Neal tried to go in the first class bathroom, but his efforts are thwarted by an irate first class passenger and a "by the rules" stewardess. Neal starts to tantrum, the stewardess calls for security, and fortunately my so-calm husband steps in to ease the situation and help Neal wait until the aisle opens up.
Now I know to phone the airline in advance and tell them about my child's special needs and apprise the flight attendants, that if something unusual presents, they need not be afraid. When I call beforehand, they offer comforts including letting us board early, being kind, patient and attentive to Neal. The more we proudly travel with our children or go to movies, malls or neighbors' homes, the more they too will come to learn compassion, understanding and non-judgment, just as we have.
Tip #6: When traveling long distances prepare activities to keep your child engaged
For older children, this might include computer games, DVD's, magazines, etc. When Neal was younger, I wrapped up little "gifts" in aluminum foil and let him unwrap them periodically on the trip. I remember going to a party supply store and buying bags of favors, little match box cars, airplanes, bubbles on a string, animated characters, plastic pretend food, etc. Unwrapping each package took up to three minutes
Tip #7: Staycations: Same place, different experiences. Customize!
When I was a child we went on a family vacation every year, usually to the beach. One year, our finances were particularly low and we couldn't get away, so my Dad made a fun time of "Vacation at home!" My dad and mom set it up so that each child and parent got "their day," and the other family members went along. My dad's choice was fishing at a nearby lake, my Mom, "vegging" out at a local pool, my brother chose an amusement park, my sister a movie, and I chose going to an art museum. This special week stands out in my memory as one of the best vacations in my life.
Let your child be part of this planning process. Use a dry erase pad and write down possible ideas. Let your child circle or point to where they would like to go. For kids who are nonverbal there is a new app for the iPad called Proloquo 2Go that "provides a full-featured communication solution for people who have difficulty speaking." Find what communication system(s) work best for your child so that your child with ASD can have a voice in choosing where they wish to go. Let each child feel special. If possible, you can bring along a teen volunteer to help out. For Moms, maybe your special day can be going ALONE to a spa day, while the rest of the crew has a picnic. Refuel. It matters.
AMC theaters now offer Sensory Friendly films where our kids can walk up and down aisles, make noise, and just be themselves.
Tip #8: Get a special pass when you go to an amusement park (or other busy venues like concerts, plays, etc.).
Some children with ASD love amusement parks, some find them too stimulating or overwhelming. Again, preparation is the key to success. Before taking Neal to Disneyland, we showed him photos, went online and let him do a virtual tour. Once we arrived there, we had a pretty good idea of what he wanted to do. Remember too that your child's interests may seem odd but they are his or her interests. (Neal could go on Space Mountain 10 times!)
Most of the major amusement parks have a special disability pass where your child and family members do not have to stand in long lines. Don't be proud! Get this pass! In fact, Neal is one of the most popular kids on our block when it comes to going to Magic Mountain, his now favorite amusement park, since everyone in his party doesn't have to stand in line!
Tip # 9: Enjoy the great outdoors.
Neal loves to be outside. I have seen him the happiest when he can be out all day long. Go camping, to the beach, hiking, have picnics, do things where your child can feel boundless with few opportunities to have to say "No," or manage inappropriate behaviors. Today there are many outdoor programs that families with special needs can enjoy:
Leaps and Boundz
Autism on the Seas (look for the new Miracle Project on the Seas, next summer!)
Camp Surf in San Diego
Extreme Sports Camp
Tip #10: Be Here, Now (wherever "Here" is that day).
Give yourself the present of being Present. Enjoy this precious moment. I once attended a family surf camp where the dad had spent hours preparing his son for surfing: practicing standing on a surfboard, paddling in a pool, etc. However, once at the beach, his son was so excited about being in the ocean, that he just wanted to play and dance in the waves, he didn't want or need to surf as planned. The Dad moped on the beach, feeling this situation as one more failure. I suggested that he stop for a second and look at his child who was in complete joy. The father soon realized that it was his own need for his son to complete the task at hand, rather than enjoying the moments with his son. He realized as we all do from time to time, that the gift of the present is sharing time, experiences and engagement with each member of our family ... in their own special way, and in their own special time.
As I look back, even that first seemingly "failed" beach trip where my Mom and Neal spent time on the patio together, was actually a beautiful bonding time between grandchild and grandmother.
Enjoy the moments. Yesterday is gone, tomorrow is a mystery. Today is a gift that is why it is called the Present.