In the past 3 months some pretty unexpected and life-altering events have occurred within our family's inner cirlce. There was a marriage after almost two decades of widowhood (big change!). There was a sudden separation and subsequent divorce in what seemed to be an idyllic marriage between two best friends. Then there were the horrible double bombings at the Boston Marathon, which rocked our community to its core. My husband and sister both work walking distance from the sites of the bombings. THANK GOD neither of them was at their office that day-- a first time "Marathon Monday" occurrence for both workaholics! In the days following the attacks it was impossible to shake the constant uneasiness each time they both headed back to work.
Even after these three major events had passed, it was just SO hard to move forward. A sense of loneliness and sadness just lingered. There was no escaping it. In our family we were dealing with no longer having our usual regular family childcare support, having new temporary house guests and needing to help our loved ones who needed some extra TLC. In our community: one of the casualties of the bombings, Krystle Campbell, was from the suburban city where we live. Her funeral was walking distance from our house. Now I can't help but think of her and her family each time I run to the neighborhood market just to pick up some milk. Something that seemed so mundane now has a whole new meaning... In my professional life: one morning as I drove into work going the same route I have traveled for over 15 years I was unexpectedly redirected. My entire usual route to work was closed for the memorial of the fallen MIT police officer, Sean Collier. Now every morning on my way to work I think about the senseless loss. I just can't get away from any of it!
In my attempt to cope I changed many of my habits: I readjusted my schedule to spend more time with my loved ones, reaching out to those whose lives had been altered to make sure they were OK. Our family had been thrown off to such a degree that I wanted to offset it with love and bring it back into balance. I also made it a point to learn as many of the names of the victims, to pray for them daily by name, and to make it my priority each day to follow up on their progress. Each day I searched for news of their journeys from intensive care to acute care, then from rehab to going home. I have followed and prayed. The images of the carnage were so horrific that I needed to know those who could would be OK. I could do something... and I would feel better!
In the midst and aftermath of these three enormous events, one thing has become so apparent and that is the phenomenal ability for human beings to adapt: reconciling with your "new normal" when life as you knew it has shifted so off-kilter that you can't see straight. Nowhere has this become more evident than in the lives of the many individuals injured at the marathon, particularly those who've lost limbs or basic body functions. As an OT who started out in rehab, I can attest to not just the physical but emotional mountains to climb as you relearn to sit, eat, dress yourself, walk and return to the "real world" when the last time you were there you faced the most horrific event of your life.
"Adaptation" is a basic human ability, necessary for survival. It can involve the physical and emotional realms. It's what in OT school we are taught to help others with and why I love my profession. So, where does that leave our loved ones with ASD whose neurological and social-emotional make up makes it nearly impossible to accomplish such a basic but essential human skill? As my little man prepares to leave the familiarity and comfort of the preschool class in which he's been since turning three I wonder: How will he adapt? How long will it take for him to acclimate and get used to his "new normal" in kindergarten: new building, new teacher(s), new children, new (and greater) expectations? We've started visiting the playground at his new school, we're writing social stories, we're going to meet his teachers/children at a "meet and greet," and we're visiting his new classroom... we're doing all we can!
But what about the unforeseen changes? A change in the schedule? An absent teacher? A surprise fire drill? A game that doesn't go quite as planned? A rule being broken? These are the things that too frequently keep our loved ones with ASD from "fitting into" this world! As I pondered upon this concept, it made me think of the words of Jesus as he prayed for His disciples in John 17:14-16:
"I have given them your word and the world has hated them, for they are not of the world any more than I am of the world. My prayer is not that you take them out of the world but that you protect them from the evil one. They are not of the world, even as I am not of it." (NIV)
My loved ones dealing with major life changes and loss didn't get the privilege of a dry-run or a social story. Each of the victims of the marathon attacks couldn't have possibly prepared for what was to come! Yet, here they are, facing a new future that they did not plan for. BUT...a new marriage will eventually feel like an old marriage and grow into a familiar and comfortable way of life... a newly single person will rediscover their strength/resilience/independence to conquer life's new adventures... a loss of a limb will lead to new advances in prosthetics and the open and welcoming arms of a whole new community who's already been there and is ready to offer support, wisdom and guidance... and a new school for kindergarten will eventually become a second home and preschool will be a memory of the past.
Unlike "neurotypical" individuals who are able to move on when faced with even the most unthinkable challenges, our loved ones with ASD are just NOT adept at adapting! But just as all human beings, our loved ones with ASD must face and overcome change! As hard as I know this can be for them, I find comfort in knowing that just as Jesus interceded for His disciples, He is on our loved ones' side. I choose to believe that my son and all your loved ones with ASD are watched over and protected, just as Jesus said in John 17:15. He will send His angels in forms of teachers, aides, therapists and even other children to help them navigate this strange and seemingly foreign world... Just as He has sent the Holy Spirit to guide us as we travel through this world as pilgrims on our way to the next... and just as He sent those amazing first responders, doctors, nurses, therapists and specialists into the lives of the victims of the marathon who now face whole new lives with unforeseen changes and challenges.
Change makes you grow and learn... ASD won't and shouldn't keep you or anyone from that very essence of being human!