You will make blunders. No matter how long you have been in this game, you can never predict everything that will go wrong. You may even be the one to set things up to be terrible. For instance on Day Six, I asked Brian if he wanted to wear his new zoo t-shirt. That turned into him thinking we were going to the zoo again. And that’s all he wanted for the rest of the day.
You can’t over pack. Not with kids like Brian. It is important to have every item possible that they use for comfort- be it certain foods, headphones, movies, favorite pajamas, etc. Whatever you can do to make the trip feel as familiar to them as you can, do it.
Such a classic picture of Brian’s type of wandering. Just ready to go see what he wants to go see, regardless if we are following or not.
Remember safety. I used a trick from Pinterest for this trip, as our new temporary tattoos didn’t get here in time. Use a permanent marker to write information on your child (Ours read: “I have autism. If lost, please call (207) xxx-xxxx”) and then cover it with liquid band-aid. It really works, and it didn’t bother Brian at all. Later that evening we were able to just use a warm washcloth to take it off. The marker just comes off with the liquid band-aid. Consider tracking devices, ID tags, and always carry an updated picture of your child. We were lucky, we didn’t have a single bolting experience (definitely some wandering attempts), but regardless you must plan for the chance of elopement.
There will be amazing moments and there will be terrible moments. There will be moments, or even whole days, where autism doesn’t really play a huge part. There will be moments, or even whole days, where autism takes center stage and you are just dealing with one meltdown after another.
Don’t try to do it alone. It can take a lot of energy on those terrible days. There were evenings when the fire pit was going and the boys were roasting marshmallows, that I just climbed into the bedroom in the RV and hid there for just five minutes to myself. I wouldn’t have been able to do that if Colin wasn’t there. Also, when your ten year old is lying down in the middle of the National Mall having a meltdown and you are sitting there applying deep pressure and modeling deep breaths and using a quiet voice to remind him of the schedule and you are thinking that you just want to cry and are feeling like a failure….all it takes sometimes to turn that around is for your husband to whisper in your ear, “You are superwoman. Your patience is amazing, you are just such a natural at this”.
At the free outdoor concert where we all just let out a collective sigh of relief.
Be flexible. Our plans changed a lot on this vacation. We scrapped both a whale watch and a tour of the Capitol building due to moods and realizing what Brian could or couldn’t handle. But we also had one of our best memories when Brian followed music he heard while we were passing through the National Sculpture Garden to get back to the train. He had found a free outdoor concert by a pool where we could dip our toes. It was just what we needed after an unsuccessful day to the Smithsonian Museums.
Taking a break after a few meltdowns. No better place to self-regulate then at the Washington Monument.
You will feel emotions you are embarrassed to admit to. When you attempt a big family vacation with a child who has autism or significant needs you are setting yourself up to be amidst families who are typical. When you’re in the Museum of Natural History and you stumble mistakenly into the dinosuar room (because believe me, we were trying to avoid it after our trip to Field Station: Dinosaurs) and your 10 year old immediately starts screaming and trying to bolt and your 11 year old is almost in tears because he’s angry that he can’t see the exhibit you will feel anger. You will feel resentment. You will hate those other “normal” families. It will pass. It always does. But those moments happen, and I’m admitting that here for all to hear.
The RV is the one of the best things that ever happened to our family. I know I already wrote about this, but I can’t say it enough. There is no other mode of transportation or lodging that would’ve provided the comfort of “home” to Brian like the RV does. Each evening he was so easily able to unwind, no matter how difficult the day may have been. So go out and buy one.
Balance your days. We always tried to make sure that we were balancing our days between seeing the sights and just having downtime at our campground where the boys could swim in the pool, play on the playground, or just chill out in the RV.
Just give it a go. You’ll never know if you don’t try. Yes, we had our downs. But we had amazing days. One day we spent seven, yes SEVEN, hours at the National Zoo. Not one meltdown. Not one complaint. Just an amazing day exploring. laughing, and enjoying every moment. Even with the hard points mixed in throughout the vacation, we can look back on the whole trip, just a couple days after being home, and smile. It was an amazing week and we would do it again in a heartbeat.Check out more pictures from our Epic RV Adventure on The A-Word’s Facebook page!
Heather resides in Rockland where she is busy juggling life as a newlywed, a mom to two boys (one of which who has autism), a part time job in direct sales, and a full-time job as a pediatric occupational therapy assistant. She has a love for live music, karaoke, and cheering on the underdogs.