By Ali Hoffman – guest blogger
I love this post from the Onion, Mom spends beach vacation assuming all household duties in closer proximity to the ocean (1.) This article rings true to many of us with smaller children. Long gone are the days of reading a few books the week of vacation as we are lucky to read a few pages. Bringing a chair to the sand may truly be a sign of optimism as building sandcastles, boogie boarding, and kicking the soccer ball around don’t allow sitting for the most part.
As a parent of a child with autism, I take this post a bit further. I would add assuming all household du-ties and the role of teacher, occupational therapist, speech therapist, nutritionist, and ABA provider as well. Parents in our situation probably smile at reading it but it’s true. As I packed the car for our week-long trip to the Jersey shore, I wondered why we don’t own a Suburban. I needed to pack all the extras to make sure I had everything I might need for Matthew while we were gone. The ever growing list includes: weighted blanket, music therapy pillow, assortment of reading materials for our proud pre-reader, favorite puzzles, a laminated schedule to help provide structure to the day, and an abundance of gluten free and casein free food. I am sure I will forget something. As I packed the car, my husband bet me I couldn’t make it fit but my years of experience with puzzles and Tetris allowed me to prevail and we were on our way.
I know many parents of kids with special needs who don’t vacation. For them, they’d need an RV to bring all the things they might to ensure their child being happy while away. They share that it’s too hard to take their child out of their known environment. The fear that it will be too hard outweighs the possible great that could come from a getaway. I totally get and respect it. What I’ll share is that in our experience, vacationing with a child with autism is fun, hard, emotional, and stressful which is the same as living with our amazing Matthew at home. In the past few years, we’ve increased our travel. We’ve traveled to Disneyworld, the beach, and recently to Boston, MA. What we’ve learned from our travel is that Matt doesn’t mind big crowds, loves big cities, enjoys rides big and small, and can walk for over 5 miles in a day. We wouldn’t have learned those things without traveling. His smile during these activities is amazing and I’m so grateful we push our comfort zone. I reflect often that if Matt was verbal, he might bound down the stairs on a weekly basis in the summer begging us to go to Six Flags for a coaster fix or to graduate to surf lessons from his favorite boogie board. The fact that Matt is minimally verbal forces us to try these activities without knowing if he wants to do them or not. You learn as you go. Sometimes it’s a great victory and other times it is not. It’s important to keep trying because you may discover new interests and fun along the way.
In the pursuit of fun, you will sometimes experience turbulence. These bumps in a trip or outing will test you. Our strategy is to try, be flexible, and pivot. We’ll change the day’s plan, add in a nap or iPad rest period, etc. This means that you might not get to see the fireworks at Disney, walk the beach under the stars, or eat dinner past 6:30 p.m. but it’s okay. If all those adjustments fail, you can always go then pull the emergency cord and go home. We left our beach trip a day early this year. Matt had done a great job but hit a wall. Despite packing everything, trying everything, he hit a wall and was hysterically crying. I paused in that moment. I watched him and realized that it was all out of his control. I saw the fear in his eyes that he was so unhappy and out of sorts but “wanted to stay at the beach.” I held him in my lap with a giant bear hug and after a long while, calmed him. I told him that we were going to go home and sleep in our own beds. I explained everyone was going home the next day so we were just getting a head start. I stressed to him that we would celebrate the next morning by getting our favorite donuts and have a pajama day. I got him calm and we went home. He fell asleep in the car within minutes. He never sleeps in the car.
On the drive home, Mike and I spoke softly to one another about how great the trip was despite the bumps. I told him that one or even several tough moments do not define a trip. We reflected on our June trip to Disney and that we had a great time despite the fact that Matt got so overheated we had to leave Magic Kingdom in a hurry. He bounced back the moment we got him to the hotel and into the pool. Our recent trip to Boston provided a challenge of fasting prior to a medical test. Matt embraced lemon sorbet and walked around Boston with a huge smile. For our family beach trip, he had the best time boogie boarding, spending time with family, eating pizza, and walking a little more than a mile into town. I list out the great moments because that’s how I choose to remember the experience. It’s rare that the bad outweighs the good in my opinion. Mike smiled at me and told me he loved that about me. He admired that I focus on the positive. I thanked him and shared that I developed my ability to embrace the pivot so I could move forward after Matt’s diagnosis. All that stress about how things should be turned into how things might be. My plans converted into guides. I go into all situations excited, nervous, organized knowing that if I need to we’ll regroup, pivot, and try something else. If that doesn’t work, we’ll pull the emergency cord and it will all be okay.
Matt slept in the following day and walked around our quiet house. He was calm, happy, and at peace. He brought us his favorite books and pictures. Mike and I equate it to when you are at a work meeting trying to be on your best behavior even when you truly want to let it all hang out. Matt tries so hard to keep it together, be around people, and join in sometimes. I think that’s amazing. But sometimes you need to let it all hang out and the place where Matt feels most comfortable doing so is at home.
For me, I’ll continue to pack up the scooters, legos, board games, weighted blankets and the most ex-pensive GFCF treats you can buy and realize that it’s not a guarantee that things will go without bumps. You can buy a ticket to fly somewhere knowing that you can survive a two hour flight in the worst of circumstances but realizing you may get lucky and have a smooth and happy flight. When you arrive at your destination, soak in your moments and if you want, write them down to remember into the future. I left Disney with many notes but my favorites were watching Matt enjoy viewing the giraffes from our balcony, roller coasters, water slide at our hotel, and Mike and I drinking wine during every sunset. I left our beach week with Matt enjoying his cousins and grandparents, boogie boarding at the beach, and kicking the soccer ball with us. For me, I read a book, enjoyed a great dinner with my sister and brother in law, and spent time with my niece and nephew. I’m grateful to have these memories and look forward to making more again soon.
Other blogs by Ali Hoffman
Editors note: thank you Matt’s mom for the great blog and volunteer efforts on behalf of families living with autism. I am honored to work with you for a common goal. I greatly appreciate your honestly and humor to educate and support. You always inspire and make me smile. ~ Lisa