While I intend no disrespect for the meaning behind the Memorial Day holiday, the thought of any long, holiday weekend or break from our routine always gives me a bit of anxiety. Unlike most of the world, who likely use the bonus day off work to relax and unwind with friends and family, many autism households don’t often get to enjoy that much-needed rest. Instead, we spend those additional 24 hours entertaining our autistic child minute to minute, alone at home.
On several occasions, when my children were younger, we would receive invitations to cookouts and pool parties which sounded so wonderful that I often didn’t think twice about attending.
However, bringing Skyler to a private party or public event is not as easy as people assume. It honestly makes me chuckle when our well-intentioned friends say, “Skyler can’t hurt anything, don’t worry about it,” because they clearly haven’t seen our strong, efficient tornado in action!
Although my husband, Josh and I have a lot of energy (or had when we were younger and more spry!) and Skyler-management skills, the challenging part of any public outing is sensing that our family is on display. We constantly feel the emotion brought on by critical glances and unfair judgement from people who assume they know our situation just by watching.
In addition, we quickly learned that there is absolutely no way of effectively overseeing and handling unpredictable situations unless both parents are present.
To reduce the unwanted attention and to appear invested in conversations with the other guests, these moments require that Josh and I divide and conquer. One of us will stay close to Skyler, following him around every minute, ensuring he doesn’t break things, pull hair or hit. Meanwhile, the other parent tries to socialize. It is honestly miserable for all of us because we are so on edge that no one can relax and enjoy themselves.
Another frequent part of the ordeal that can be irritating is when people I don’t know tell me they had no idea Skyler had autism because he doesn’t “look disabled.” It is frustrating feeling like I must constantly explain the uniqueness of autism to each person we encounter.
Based on the stress of it all and the fact that Skyler has aged and grown, developing aggressive behaviors which are much harder to predict or manage, we came to the realization several years ago that it is just easier to stay home.
Taking our lead and essentially supporting our wishes, the invitations to large gatherings and celebrations have long since dried up. And therein lies the conundrum…. It is no fault of theirs, but again, we are isolated from friends and family.
While I don’t regret our conscious decision to escape the unnecessary stress, we can’t avoid feeling like we’ve sealed our fate and become permanent outcasts.
To be honest, that was the main reason we decided to put in a pool and create a little backyard oasis of our own – we figured as long as we are alone at home, we should enjoy ourselves with our own set of expectations.
There’s no judgment if Skyler has to be quickly rushed inside because of a bathroom emergency or his adult swim diaper needs adjusting; we can play Skyler’s favorite hip hop music or Elmo’s World on the outdoor television as loudly as we want without embarrassment; and we can assist Skyler with eating his meals and not feel badly with the mess we’ve made when the majority of the food is swiped to the ground.
Even with all of that weighing on my mind, I refuse to sit around feeling sorry for myself or our situation. I genuinely believe that life is what you make it and there’s always another perspective to consider. If you display positivity, that is exactly what you’ll generate in return.
I am confident there are plenty of parents who, like me, were doing their best to not lose their patience today and perhaps found a quiet moment to reflect and honor those who sacrificed their lives to provide us with the very freedoms we enjoy.
The best decision I’ve ever made was to not sit in my sadness on the sidelines. I was determined to find my ‘people’ and build a huge village of parents and supporters around me who could relate in one way or another to my experiences.
Although many miles separate us, befriending Kate (@findingcoopersvoice), Malinda (@autismmasterminds), Kristi & Brenda (@disorderlyblondes), Jess (@jessplusthemess) and Kelly (@growingupsteven) along with countless other parents, caregivers, siblings and self-advocates through social media has truly changed my life. My only regret is that I waited SO long to discover them all!
Know that we each have a story to share and each of our stories matter. Let’s not hide or feel like we have to navigate this bumpy autism journey alone. Let’s welcome each other into our respective lives and maybe, even in the thick of the difficult times like holiday breaks or God forbid another pandemic, we can identify ways to help others smile and once again feel included in daily life rather than isolated.
The journey through autism is not easy but know that you are never alone.
