Posted on Mar 06, 2019
A couple of years ago we were faced with what should’ve been a pleasant prospect: Not only did our three children’s spring breaks all line up, but my husband was able to get most of the same week off from his medical practice so we could go somewhere on a trip.
Great, right? A spring break vacation with the entire family!
Yes, yes it was great. But, as with any impending vacation opportunity in my family, it also became a source of worry and tension - would we all be able to go somewhere together? What place would accommodate all five of us and our unique needs? Would it be better to be a fractured family and have some of us go on a trip while the rest of us stayed home?
Our eldest son, now 18, is profoundly autistic and needs significant supports. His needs and challenges are great, and it factors into every single decision we make as a family - from can we try and get some ice cream after dinner to is it possible for us to vacation together over spring break?
Our plans revolve around all our children, but especially our son and his disabilities and needs. Although we have flown in the past, we haven’t been able to fly together anywhere in about eight years. Anywhere we want to go has to be a driveable distance. There are also very few places we can go where all of us can enjoy and be together. Amusement parks? Heck, no. Too much of a sensory overload. A different city for sightseeing? Too many people and opportunities for things to go wrong. Museums and shows, even movies? Forget it. He is more loud than not and always on the move. One of us needs to be totally devoted to helping him and making sure things don’t go awry in a public setting.
Nearly any option is a non-option for us due to the myriad of challenges and difficulties our son has with managing his behaviors, sensory input and emotions. He is nonverbal, but not non-communicative. And now that he is a young man, one of my biggest worries is him being out in the community and being targeted by someone or by law enforcement for his inability to understand social norms. Being a young, brown Muslim man in America these days is challenging enough. Add profound autism to that.
One tried-and-true option for us is the beach. Our son D and all our children love the beach, and we’ve gone several times over the years when we’ve planned a vacation as an entire family. Often though we’ve had to submit to fractured family syndrome, where my husband and our other two kids may take a trip somewhere, and I stay home with our son. Or vice versa. Next month for spring break that’s exactly what we are doing, with our younger two kids going on a trip with their dad while I stay home and hang out with D.
Even if we do go to the beach as a family, it takes a lot of planning. There are special diets to adhere to, medicines to pack, his weighted blanket to keep, sensory toys and a white noise machine that we need to bring. The list goes on and on and on. It’s a known fact in my family that a day or two before we actually leave to go somewhere together, my mood gets grumpy. I wonder - is this worth it? Will we all really enjoy this trip? Often enough D just wants to stay home and be in the routine of home and school. Sure, he enjoys the beach and ocean once we’re there, but the journey can be difficult for him and anxious for the rest of us.
Spring is often a time for renewal and rebirth, for cleansing and yes - for thinking about these types of vacations and what you may like to do with your family. For disability families, those prospects are often vastly different. Can we afford to go where we want? What about my child’s needs? Is it safe for him? Can he be included in the activities everyone else wants to do? Will he enjoy? Is it too difficult? Will the other children also be able to have fun? Whom is this vacation for?
I want D to enjoy. I also want his brother and sister and father to enjoy, too. That means sitting these trips out sometimes. Choosing to stay home. Or, if we do try to go somewhere new together -- like when we went to the Smoky Mountains that time all of the kids and their dad had the same week off, we say Bismillah, take some chances and try some new things.
We read the situation and figure out what will work for D and the rest of us, and what will not. The stakes can be high, but we trust in our ability to read the situation, to anticipate D’s triggers, to make sure we pay attention to our other children and trust in Allah.
I want to give shoutouts to all the restaurants that gave us private rooms, the horse-riding and zip-lining park in Tennessee that accommodated our younger two kids while D and I hung out being our glorious selves chasing chickens in the campground area, the vacationing families who smiled and said - don’t worry about it - when D swiped some french fries off their plates at the mini golf place when I wasn’t looking. The mom who brought me and D water when he was revving up for a meltdown and I wasn’t sure how to make it back to our car.
Spring break and any vacation planning always comes with an amount of stress, but what is important is to focus on the things that matter -- what is best for your family and the reason(s) you are trying to plan a vacation. Keeping these things in mind helps me and disability families like mine with the decision to plan a trip, go for an adventure or choose what may be a more peaceful staycation at home.
Small kindnesses and smiles are so appreciated in our kind of living, especially when we leave the comfort and safety of our home and try a spring break (or any type) of trip. There’s a reason the Prophet Muhammad (saw) said that smiling is sunnah. A kind, welcoming smile goes a long way.
Photos are of myself and my kids on different vacations and staycations over the years.