I have been working with developmentally disabled people for over 15 years, and over that time have found certain truths always seem to be self-evident. Among these are: residential workers seem to smoke more than the general public; there never seems to be enough hours in the day; and there are always going to be families or guardians that seem to want to make your professional life miserable. It is to this last point that I would like to make comment; both as a Human Services professional and as a parent.
I can’t recall the number of times that I sat around after an annual meeting, jawing with co-workers and complaining about how unrealistic, unyielding or just plain unreasonable a guardian was behaving. It was a topic we all had in common and, in an uncanny way, almost came off as being funny. Well, the circumstances of my life have forced me to re-look at how I view these people.
Our son Aaron was diagnosed with autism. I clearly remember my wife and I sitting at a conference table numbly listening to an expert trying to give us a glimpse of what the future might, or might not, hold for our little boy. From that point on, we were on a roller coaster of fear, trepidation, and pain. Furthermore, with all my so-called expertise in the field, we knew next to nothing about how to deal with his special needs on a twenty- four hour a day, seven-days-a week basis.
All of a sudden, our lives became inundated with reading material, appointments, IEP meetings and physical changes to our home. I feel safe in speaking for my wife that our situation would creep into virtually every thought, no matter what else we were doing.
Almost three years later, we have pretty well settled into, what seems to be, the routine of our family. We have our ups and downs, but one sure thing is that every six months we sit around a table and listen to, admittedly very nice and competent professionals map out our son’s life for the next six months. During the meeting, my thoughts still drift to things like will he ever drive a car, have a career, or find the happiness that I have in the comfort of a wife and family. All the while, I have to fight to bring myself back to the task at hand.
After one such meeting, I began thinking that I’ve been through this hundreds of times, but always with other people’s kids. I wonder what my son’s team was saying about us. Were we unrealistic or unreasonable? I don’t think so. We were just trying to be the best advocates possible for our son. For the most part, isn’t that what any parent or guardian wants for their child?
I guess the last inalienable truth I’ve found also seems to hold true. We really can’t judge another until we’ve walked in their shoes. When I think in those terms, I can’t help but wonder if all those “other” families that I talked about were really that unreasonable, or was it that, for all my sincerity and sympathy, I never truly realized what it was like to be in their shoes.