Updated: Jun 12
We used to call it our family vacation but when I think of a vacation, I have images of putting my feet up at the pool with a fancy drink in my hand, a good book and slipping in and out of sleep. Let me be clear, our family vacation could not be any further from that vision. Summer travel is a lot of work but also a lot of fun and worth every minute we spend planning but we always want to set ourselves up for what we are getting ourselves into.
I will touch on our pre-travel family plan, tips for the airport or a road trip, accommodations at a hotel, airbnb or if you’re staying with family, activities and last but not least, food! I’ll mention that I have Glenn, my husband, for a travel partner, but if you are traveling alone or are a single parent or grandparent, much of what I share is still relevant.
Our Family Plan
For us, this plan is a game changer. Luke gets anxious when we travel and by anxious I mean my 5 foot, 87 lb son develops super human strength and he pinches, hits and/or bites anyone he can reach. He loses all words and just physically reacts. He is completely dysregulated. This happens when he has to wait in line, is in crowds, during transitions, when we’re having a conversation that he does not feel part of or when he picks up on any tension from us or people around him. And you’re asking why we travel, right? Because we love visiting our family and we love experiencing new places and trying new adventures.
So we front load him with photos and real life social stories, decide who is in charge of what and we make sure we review and use our secret family code word each day!
Photos/Real Life Social Stories We start a week or so before we travel by showing him pictures of years past of us at the airport, going through airport security, sitting in his seat with his Ipad and headphones and photos from past trips. Disclaimer-we make sure to show him only the photos where he’s smiling:) Luke responds better to real life photos and yes it is a pain to take photos when you are going through the airport but trust me, it’s worth it for the next trip. I’ll talk about TSA Cares in a bit, it’s a must! Driving is the same, take photos of the packed car and last year's road trip.
Who’s Doing What-We wake Luke up at 6:30 each morning so that we don’t “miss it”! No one wants to start the day out with a blow out and Luke is not toilet trained. We sit him on the toilet and as long as his diet is regular, he usually takes care of business. Glenn and I take turns with the 6:30am wake up call and we know before we leave which days we are on and which days we can sleep in. Who will do the grocery shopping when we arrive, who will do the bath and put Luke to bed each night. We divide and conquer each day and Luke doesn’t join in all activities, especially when they are physical, so we plan who is doing what each day.
Secret Family Code Word-this is the magic that often saves the day. Our word is “butterfly” and we use it when one of us is changing, dressing, feeding or doing something with Luke and he is starting to feel anxious which happens often when we are away from home. When any one of us hears ”butterfly”, we know to stop talking. I mean no one says a word. We may even stop breathing for a second or 2. It's that serious. Whoever is with Luke can focus on him and only him to calm him down. When we stop talking, Luke almost instantly relaxes. We can finish up with Luke, get him to preferred activity, usually his Ipad or t.v. and move on. When we travel, we drop the “butterfly” bomb a few times each day. And it works! Without our favorite word, we’ve been in a situation where Luke has hit one of us, which leads to more stress at Luke and at each other, he picks up on it, and the situation deteriorates. So when emotions get high….Butterfly.
Airports or Road Trips
TSA Cares! If you are flying, fill out a TSA Cares Assistance Form or call if within 72 hours to receive support during the screening process. This is different than requesting a wheelchair or pre board but if needed, do those too! For us, TSA Cares look different depending on the airport but reach out at least a week before to communicate exactly what is difficult with your family member and what support would be best. For example, Luke did great when a TSA Cares worker met us as we entered the airport, greeted Luke (she even held his hand), skipped the screening line and talked him through the wand and what the TSA agents were doing. He had fun and was not at all stressed.
Again, the best way to have that experience is to call or email at least a week in advance. Make sure to request a wheelchair, any assistance you will need at the airport, check in to preboard and scope out food options ahead of time. For road trips, plan out your route, pit stops, food stops, etc ahead of time. You can also print out a map with your route to show your child and track your trip and any special stops along the way. It would be fun to map out the trip and google fun places to stop or visit based on your interests along the way. This allows your child to have a voice and some choice with the planning.
Where You Rest Your Head-Hotel, Airbnb or with Family
Whether you're staying with a family member, at a hotel or an Airbnb, (and we’ve stayed at them all) there are a few things to consider. What needs to be child-proofed? What valuables/breakables need to be put away? Consider sleeping arrangements, access to a bathroom. Some hotels will accommodate needs such as a first floor request, as far away from an elevator as possible, a fridge, room service or restaurant (check out the menu), 2 beds vs 1 king, or bathroom accommodations such as a walk-in shower. Call ahead to make your request. Be kind and patient but know that not all hotels can or will fulfill your requests. We make sure an Airbnb has cloth couches vs leather as Luke scratches the arms of chairs/couches when he is on his ipad and has caused great damage to leather furniture. We make sure there are extra blankets and pillows because sometimes we have to make Luke his own bed on the floor for safety reasons. We always move furniture around so there are no tables or lamps near Luke that he can pull down in the middle of the night and he always sleeps in the same room as Glenn and I. The one time we vacationed with family and stayed in an Airbnb with a private pool we bought a “portable door alarm for travel”-google that on Amazon for options. The alarm goes off anytime a door opens unless a button placed too high for a child to reach is pushed and it has helped me sleep at night. Lastly, we always pack our own mattress pad which we use on Luke’s bed and on the airplane.
Food and Dietary Needs
Let's talk about food! If we are road tripping, a lot of snacks and essentials can be bought ahead of time. Whether we drive or fly, we have the closest grocery store to where we are staying mapped out with their hours ahead of time. If you arrive late, you will need to pick up at least a few breakfast items and water before you hit the hay. We have to make sure the store is large enough so that it carries almond yogurt, almond milk, vegan cheese and Luke’s favorite lactose free snacks. And of course, wine! Map it out so you know where to go when you arrive! If you're staying in a hotel, call ahead of time to make food requests such as mac-n-cheese or chicken nuggets at every meal or other allergy or preferred food requests. Some hotels and restaurants are better than others, but if they cannot accommodate your request, at least you know what you have to pick up at the grocery store. Plan your meals as well and call ahead of time for reservations and view menus online. We make reservations early, sometimes 4:30 for dinner, because it is less crowded and less of a chance we will have to wait for a table or too long for our food. Plus the other early birds are often very nice, not in a rush and friendly toward Luke.
We have our week planned out well in advance. What days are we doing hikes, bikes or any type of activity? Is it a fit for our whole family or will we divide and conquer? What local activities are good for Luke? We do a lot of reaching out to friends or friends of friends who know the area and we do a lot of googling. Even if Luke can’t mountain bike down the mountain, what fun, new activity can he enjoy? Luke has enjoyed riding a gondola, visiting a nearby lake or finding a local petting zoo/farm. Like anything else, call ahead, be transparent about your needs and once you talk with them you’ll know if it is a fit. You can check out autismtravel.com for museums, organizations, restaurants, etc that are Autism Certified which means at least 80% of their staff has been trained and certified in the field of autism. Luke’s is not autistic, but does have some of the same challenges, so I check it out before we travel. They continue to add new destinations. One other suggestion is to reach out to your contacts to see if anyone has a referral for child care when you are away. We haven’t done this ourselves, but I have friends who have and it’s allowed for an afternoon or dinner out without children.
There are many other tips and suggestions and I look forward to hearing what has worked for your family! Let’s share our resources and information! And let’s get out there and travel!