Through Amy’s Eyes: The Power of Social Stories
Theirs was a love affair to remember. She was the center of his universe, and he was hers. Jessie and my father, “Papa Mike,” lived for each other. On days when she knew he would be visiting, Jessie sat by the window for hours until his car pulled up. And, similarly, he eagerly awaited her arrival home from school so they could have their daily FaceTime call. I got such a kick out of watching their relationship deepen over the 15 years they had together.
My dad, who was always the family baby whisperer, had his need to be needed fulfilled hundreds of times over with Jessie’s arrival. When his 3 pound 12 ounce granddaughter arrived, his life changed in ways none of us could have imagined. He would come up to my house and babysit when she was an infant and never put her down. “Papa” was the third word she ever verbalized, made even more beautiful by the fact that we had to wait over three years for her to say it.
Literally, the only time in my life when my father didn’t come running to take care of me was the day we received alarming news from Jessie’s neurologist. Whether he refused to believe the doctor’s message or he was in too much pain to let me see, I’ll never know.
He found his resolve, though, and really never left Jessie’s side, even though he lived an hour away down the Garden State Parkway. He spent weeks with Jessie sitting on his lap teaching her how to unscrew a bottle cap; he would hide in our basement when the Early Intervention occupational therapist came over because he couldn’t stand to hear Jessie cry. He never missed a school concert of hers and, fortunately, was sitting next to me when Jessie surprised us on stage and sang a solo in “Jingle Bells.” Despite Jessie’s expressive language challenges, she managed to convey her love of this man to everyone. As a result, my dad was famous. Her teachers, her therapists, even the wait staff at our local diner knew all about him. He would often be greeted at Jessie’s school by someone exclaiming, “YOU must be Papa!”
And so, when my father was diagnosed with a terminal illness, I was paralyzed with
worry about how my little girl was going to handle the loss. When a child is profoundly apraxic, it can be difficult to ascertain how intact the receptive language is. I wondered if Jessie would understand his passing and be completely devastated. Or would she not comprehend what happened and ask for Papa every day? I was convinced there was no good outcome to be had.
Enter: the social story.
As was often the case, my fear turned to action. I reached out to Jessie’s school psychologist, looking for a partner in this journey. For a year, they read a book Jessie could access about a little girl saying goodbye to a special friend. Admittedly, I was skeptical; but I was too despondent over my own impending loss to question it. When he finally passed, after his funeral, I was ready to face the day I was dreading more than the day he died. Jessie and I sat together in the school psychologist’s office. The psychologist took out the social story she had put together, aptly titled, “Saying Goodbye to Papa.” As they turned each page, full of photos of Jessie and my dad together, Jessie learned that my father had died. And what happened next felt like a miracle.
Jessie cried.
It seems counterintuitive, but her tears were a balm for my aching heart. She totally got it. Thankfully, I wasn’t going to have to explain his absence every day for the foreseeable future. I was simply going to have to manage her pain just as I was doing for her brother.
It was the most neurotypical event of her life.
Social stories explain social situations to children and help them learn ways of behaving in these situations. After I accepted the position here at Gillen Brewer, I attended my first school event – The Benefit. After hearing parent/trustee, Brigid Hutchinson, emotionally share how grateful she was to the staff here; highlighting how they offered to prepare a social story for her son to help him manage his fear of the dentist, I knew I was in the right place. Requests or suggestions for social stories often populate our Gillen Brewer staff email list. “Does anyone have a social story for bathrooming?” “Does anyone have a social story for picture day?” These tools are an integral part of the Gillen Brewer education. Coincidentally, this week, a teacher was telling me how she received a call from a parent over summer break thanking her for the social story she had prepared about the family’s upcoming trip abroad. The mom noted that her Gillen Brewer child was better prepared for the trip than his siblings!
As a special needs mother, I welcome moments of awe. I am in awe of the care our teachers and therapists provide for the Gillen Brewer students. And I am in awe of the way Jessie managed the loss of her true love and how she has never forgotten how incredibly important he was.