This week was a hard week for me. Last year my father passed away after suffering for a period of time with lung cancer. It was hard watching a man who was so big in my eyes dwindle down to a frail image of his old self. Throughout the year we have been dealing with lots of firsts. Dates like mom and dad’s anniversary, my nieces graduation, his birthday, a new family member added and Christmas were all strong reminders to my family about just how missed he was this year. So this week when the anniversary of his passing came about it was once again a strong reminder about our loss.
I do not write this for your sympathy, because death is a part of the human experience and most, if not all of you, have been down this same road. Why I share it is because of the thought that occurred to me while I went through this experience. I had many friends reach out to me on January 21 who knew the day would be a struggle with this particular anniversary. My co-workers showed me amazing concern and love as we spent time working this week. Again, I do not share now to show how grateful I am to have so many amazing people in my life.
I share all of this to point out that often, individuals with disabilities do not have lots of human connections outside of care workers and families. So when a person with disabilities losses a family member they typically would not have the same care and comfort that I received this week. They would hit the anniversary dates, many times without out the ability to communicate to others the depths of their sadness. This sadness then comes out as behavior that may be questionable, odd or even aggressive.
I think sometimes we fail to allow people with disabilities the same time frames of mourning. We fail to think about the seasons of loss. Not only the loss of loved ones but times of the year that someone may have moved out of a family home into a facility. Grieving a loss is such a part of the human experience and so common. Throughout this year I have grieved in my way, my siblings in their way and our children in still their own way.
At times my 8 year old this year has brought up dad with an out of the blue statement about “grandpa”. Though he cannot state that he misses grandpa because of communication issues around fragile X, he obviously has memories of grandpa. My thought this week was when I pass away, hopefully many years from now, and Tyler is an adult, how would he be supported in grieving the “firsts”. When I am gone and Tyler is dealing with my one-year anniversary of not being around, how will he be supported? Would he be lucky enough to have amazing friends to send him messages of comfort? Will he have co-workers surround him with love? Or, will he “act out” and get marks in a behavior chart? In the Mandt system we teach to ‘look behind the behavior’, I pray he has the human connections to not only support him in the good times, but also in the bad.
Tim Geels – Senior Vice President of Organizational Development