A positive side to having weeks of bed rest (three herniated discs and an annular tear) is that I have a tremendous amount of time to read. In just this past week I have explored spirituality, fiction, non-fiction, and a plethora of magazines. Today I cracked open a book loaned to me about autism. Typically I shy away from such books as so many of them want to ‘fix’ the autism and I just don’t have the energy to internally battle that. I trust the source that loaned me this book, so I snuggled onto the couch and settled in.
Within a just few pages, I felt that feeling…the one where the throat chokes up and the tears sting the eyes. The feeling of such familiarness and yet such awe. The pages turned quickly and I found myself lost in this mom’s story while the images of my own kept popping into my head.
The countless therapies and endless evaluations. The painful memories of preschool where she was fascinated with the swing hanging from the ceiling and the color black while all the other kids were compliant sitting in circle time. The looks from other moms waiting on the playground for school start when I had to stuff her into the classroom convincing her that I had to go because I had laundry to do. I later learned that she spent the days of elementary school repeating, “mom’s doing laundry, she will be back”. This was clearly a memory that I had forgotten or perhaps even suppressed. The looks, the wish to have a visible explanation, the embarrassment, and the subsequent guilt over that embarrassment. All this revealed in this beautiful book. Revealed was my own pain stuffed into a world of moving forward….easily cracked open by reading someone’s else frighteningly similar story.
And then the book began to share the dynamics of the family and the impact of autism. Unprepared for the words that were to come, I began to read what the younger brother experienced. I read with amazement as I recalled that I also heard people say that her brothers are going to be such better men….how even I have said that. And yet, in experiencing their sister, they also has great loss. I saw the similarities of the younger brother within my own family. I felt the pain in my heart when I realized that perhaps the reason my son rarely has friends over is because of the exhausted need to explain. I realized how hard it must be to explain to your 15-year-old guy friends why your 18-year-old sister carries around coloring books, doesn’t drive, and refuses to talk at the dinner table.
Tears filled my eyes as I realized how hard this must be for him. How confusing it must have been to realize he is the younger brother being the ‘big brother’. The hours spent in the car being schlepped around to therapies. The constant reminders to not push her buttons. The flexibility that he is asked to maintain in order to manage her inflexibility. Despite his gigantic compassionate heart and love for his sister, he too has felt the loss.
As he spends another weekend with his ‘other family’ my heart is heavy. The other family doesn’t have disability. The sister is the same age as my girl and here my boy gets to experience a typical sibling relationship. The family gets to be spontaneous and interactive. I am grateful that between this family and his own, he gets the best of all worlds.
I finished the last page with a triumphant feeling. I am inspired and I am hopeful. I am tender in my heart of the feelings that I have had and will continue to have. I am centered in knowing that what I have felt is okay.
My next read will not be about autism. I choose to keep those for rare moments. Today was that day and I am so glad. Although the memories are painful there is such beauty in knowing I am not alone and that others have felt the same way.
(The book I read was The Regular Guy-growing up with Autism, by Laura Shumaker)