Judith Thompson Heerlein
"I'm upset because...you won't let me do what I want to do."
Who would have guessed those words could have brought simultaneous grins and tears from veteran staff members, usually adept at maintaining a studied neutral demeanor?
Less than a year ago, 9-year-old "Rose" had entered our program exhibiting significant neurological and cognitive delays, her speech limited to a few idiosyncratic consonant-vowel combinations. When faced with what she considered unreasonable demands, Rose's response was to refuse, screech, jump, or, as a last resort, throw herself to the floor.
We initiated a trial with a dedicated device, with Rose quickly demonstrating many of the prerequisite skills necessary for success. Her fine motor skills were highlighted as she easily isolated icons and navigated between pages, thrilled as she saw the effect of attempts at appropriate communication on her environment.
With such positive results, we found and customized an assistive communication device for her. She became proficient at making requests, stating feelings, commenting, and questioning.
On that fateful day, we heard Rose rejecting her midday seizure medication with a high-pitched squeal. She showed equal displeasure at being reminded to "use your chat." Given her succinct response, we asked her what we could do to help. She responded immediately:
"This is what would make me happy...I need some time alone."
Agreeing to her terms was easy enough, but the nurse, patiently waiting, explained that Rose would first have to take her medicine. With tears in her eyes, our bright young student acquiesced with the caveat: "Can I have a hug?"
Watching the two of them embrace encapsulated how years of study, practice, programming, and intensive treatment can truly make a difference to a child and her caregivers.