“Those who wander are never really lost” – J.R.R. Tolkien. (Life without a GPS…)
The sudden feeling of being lost is both uncomfortable and undesirable. You are struggling to get somewhere yet you find yourself in the middle of nowhere because you took the wrong turn or missed a stop. I am sure many of you have experienced this while driving to a new or rarely frequented destination. The verbal arguments that occur in the car between you and your spouse in hindsight can be rather comical (often long after it is over). But in the moment, the fact that your husband will rarely ask someone for directions can be downright infuriating. However, with the advent of the GPS, I would imagine these situations rarely occur anymore. If and when they do, although some may not admit to it, you find yourself yelling at the computer voice of the GPS and blame it for your wrong turn. The GPS has been a very valuable invention and has managed to alleviate much stress in our lives when attempting to travel someplace new. It is a shame there is no GPS to guide your way through life, particularly life with a special needs child.
Being thrown into a life with special needs with no map or pre-printed directions is basically like being left without a GPS and it is a daily struggle to find your way. No amount of standard education can prepare one for this life. I am simply learning as I go and I have very little or no directional control or special needs compass to guide my way. I guess I feel more lost than I have ever cared to acknowledge or at least that is what I have recently discovered from two recurring dreams.
It is fascinating that dreams rarely, if ever, misrepresent how you truly feel about a situation. In one of my dreams, I am simply unable to get where I want to be. Something always seems to be standing in my way and manages to come between where I am and where I need to go. The people, places, and time always change but the main idea remains the same. The dream that stands out most in my mind is the one where my mode of transportation, which is usually a car or bus, has broken down and I can’t get home. No one is willing to stop and help me find my way back and no matter which direction I walk I always end up further away. Another dream is that I am back in College. It is the week of finals and I have tests and term papers due and I look back at my notes to begin to study only to find that I never attended a single class and don’t have a single note available for review. I find myself in a state of panic trying to find someone to give me all the notes from the entire semester. It does not take Freud to realize that these are feelings of misdirection and anxiety that I experience during my unconscious hours.
This year has brought with it significant questions regarding Sydney’s education, her challenging behaviors, and the accommodations that our family is being forced to make. Ironically, in these last two areas we have, in fact, experienced some growth yet it appears that no matter how far we get we never reach our destination (not quite sure where and what that is yet…). I never quite feel a sense of forward progress because with each accomplishment comes new and different obstacles which turn us away from our projected path.
As Sydney began Kindergarten, a big transition for any child, I have been working hard to figure out the right classroom environment. The big question remains, what exactly is the appropriate environment and where do I find it. SMS is rare and her entire public school team is unfamiliar with it so the burden falls on me to determine whether what they offer is adequate or even progressive. I have evaluated all the school options in my area and not a single one is familiar with the educational challenges and pitfalls of a child with SMS. I ask myself how can I ever be sure we are doing the right thing for her? There have been countless meetings with the school and numerous hours spent on the development of a schedule/curriculum that not only addresses her need for a small classroom environment but also fosters her academic growth. I am left to trust in those around me to come up with the right direction to go, yet I yearn for a computerized voice to show me the way.
For any child with SMS managing emotional behavior is a lifelong process. What makes SMS different from other syndromes are the complicated, primitive, and rather disturbing behaviors that are exhibited by these children. Without going into too much detail and without compromising Sydney’s dignity, I can assure you these behaviors have stumped even the most accomplished and experienced behaviorists. There is no quick fix and certainly no simple solution. These behaviors force those that work with her to forget everything they knew to be true about behavior modification and accept a whole new approach to the process. I can confidently and proudly say that we have come a long way in this area. The right behaviorist (the closest thing yet to a GPS for SMS) has allowed us to make many accommodations to Sydney’s environment, accept her limitations, and educate those that work with her on a daily basis and we are now in a FAR better place than we were nearly a year ago. That being said, no matter how far we get there is always a new turn or new direction needed because of a new behavior and we remain on our endless journey and often feel lost.
I have given my dreams a great deal of thought and have really listened to what they are trying to tell me. I suddenly realized that I always awoke before I would find my way home or before I had to take the final exam. My dreams never really got me lost and I never actually failed anything but what they did do is highlight a very complex journey and illustrated that there are many paths that may lead to the same destination. Although it may appear that I am not moving anywhere, in fact, I believe I am.
Instead of feeling that dreaded sense of being lost, I prefer to think of myself as a wanderer. I will always be searching for a new direction for Sydney or a new approach to conquer her maladaptive behaviors but I ask you…if you are always searching can you ever really be lost?