I’m anxiously pacing down the hallway with Cailyn’s hand firmly grasping mine. Sometimes she’s excited, prancing beside me and giggling uncontrollably. She may also be upset and need comfort, begging me to hold her in my arms and pat her back. Cailyn’s mood, however, is as fragile as it is pronounced…and her mood for the rest of the day may be dictated by the next few moments. It’s a regular trip that I anticipate and often dread…the moment when I discover who will be watching my daughter.
Sometimes, we’re blessed with individuals who have a passion for Autism and Cailyn. These people (you know who you are) have impacted our lives and brought us joy, that we can never fully express. Other times (especially in new places) we’re met with confusion as we try to summarize the complexities of Cailyn’s particular spin on Autism, into a 2 minute conversation…all while a dozen other children are racing around playing in the background.
“Ok…are you planning on any loud sessions? If so, she’s going to freak out and need to be away from the others.”
“Here is a brief summary of words that you may not understand from her, but may be the difference in her being manageable or screaming and hitting herself the entire time…Snacks are in her backpack with the diapers. Did we mention she isn’t potty trained?”
“Here are some signs that she may be starting to melt down…If any of these begin, she might ask you to hold her. She uses closeness and touch to calm herself down. Are you by yourself, today?”
(Mouth now beginning to hang open)
“Please come get us if there are problems.”
It’s a “no win” situation. Cailyn naturally has a more difficult time with the unfamiliar. Unfamiliar kids, unfamiliar teacher, unfamiliar classroom, unfamiliar time…all can trigger extreme anxiety in her mind, which manifests itself in behavior that an unfamiliar teacher doesn’t often know how to manage in a five year old. It isn’t fair to any party in the transaction and the results are often very similar. I’ll walk back to the class and Cailyn will be in the corner all alone, while the other kids are engaged in activity with the teacher. She’ll already have her coat on (who knows for how long) and her diaper will be soaked almost through. She runs to me, wants to be held, and can only say a few words…
“Car Seat. Please. Bye Bye.”
We can’t maintain a lot of friendships. Most people grow tired of the overhead that comes with family time. We don’t do ANYTHING on a whim because the benefit of joy in any last-minute activity will be negated by the price we pay for a lack of preparation and forethought. Most houses aren’t Cailyn-proof, so going to other people’s homes can be a tedious exercise of head-swivel and saying “No. Don’t touch.” It’s just not worth it. Such is the life of a family with a young, special needs child. We’re separated from the norms of everyone else.
So, the next time we’re a little too quick to correct our children, it’s not that we’re “high strung.” When we don’t make an effort to get together, it’s not because we think we’re better than anyone else. If we get overwhelmed by the thought of last second plans and opt-out, it isn’t that we’re aloof or “no fun.” When we don’t go to events, whether private, charity, or church…it’s not a flippant decision to be separate. It’s a calculated sacrifice to hold onto the last beacon of sanity in our lives. What everyone else sees is nothing more than a fleeting glimpse into every moment of our new lives.
While you may be encouraged by gathering with others and singing a song, remember that I just dropped off a person I love (much, much more than myself) into the hands of people who don’t understand her; Into a place where she may be sad, scared, neglected, unwanted, and confused. Then, with that knowledge, I’m asked to stand, sing, and praise the God that permits it to be. Fellowship and community can be a supplement, but just as easily a barrier to faith.
I’m not targeting anyone, but speaking about our general state of mind and the existence of some families battling Autism. Over three years ago, our lives set out on an entirely different path. We’re no longer citizens of your land. We’ve embarked on a lifelong journey, the perils of which have no basis for explanation in your tongue. We wake under a different sky, fall asleep to a more ominous moon, and each moment in between somehow feels different because Autism can reach up and pull the rug out from any moment of serenity. In spite of this, we press forward because the love for our daughter overwhelmed our desire for normalcy. We set our sails ablaze…and here we will remain.