Raising Special Kids Fills the Compassion Gap

Not only does Michelle Dumay have a calming voice, she is able to candidly describe her complex family experiences with equal parts seriousness and humor.

In a recent conversation, she started by sharing the heartache of learning of her daughter’s prenatal diagnosis of a rare, life-limiting brain abnormality and her decision to continue her pregnancy even if it meant she would only have Fatima with her for the 60 days the doctors estimated. She continued by tenderly describing how she counted each day of caring for and loving her daughter once she was born. Then, after days 61, 62, 63 and more, she shared her epiphany that apparently, her daughter did not know how to count.

“For a long time, all the medical information I was given about my daughter fit into a ‘life-limiting/imminent-death’ picture frame. There might be some new information that changed the picture a bit, but it always fit in that frame.” It wasn’t until Fatima was almost three years old that Michelle first heard a specialist refer to her daughter as having cerebral palsy. “I kind of shocked the doctor with my response of Hallelujah!” It was the first time Michelle realized she could not only change the picture but also the frame. For the first time, the diagnosis was the focus, not the prognosis.

As Fatima grew, developed, started receiving services and attending school, Michelle began to perceive a gap. Services were being provided that met Fatima’s medical and educational needs but there was something missing. “This journey for parents includes emotional heartache and requires compassionate support from good friends and more.” While looking for resources to help bridge that compassion gap, Michelle found Raising Special Kids.

As the daughter of a special educator and mother of now 13-year-old Fatima, Michelle has fine-tuned her advocacy skills and uses her voice to speak for her daughter’s medical and educational needs. When she learned that one of the ways Raising Special Kids bridges the compassion gap is to engage parent leaders (volunteers) to share their stories with pre-service educators, she jumped at the chance. “You mean I have the chance to speak with teachers when they’re just starting out and have a chance to put something in their ear that may make a difference for students like my daughter? Sign me up!”

Not only does Michelle put something in their ear, she also puts something in their hands—literally. To illustrate the importance of their jobs for children with disabilities, she asks for a few volunteers from the audience to join her at the front of the room for a practice IEP conversation. Each person is given an identity (e.g., speech therapist, special educator, etc.) and then she hands them each a rock. A heavy rock. She then asks each to hold the rock away from their body and proceeds with the ‘meeting’. After a time, which has been described by some as ‘too long,’ Michelle allows the participants to put down their rocks and explains.

“Your job is important. Your job can be hard. So, I ask that you imagine that for that short amount of time, you’re holding the weight of my family in your hands. I also ask that you recognize I take all of these rocks home with me and hold every one of them all day, every day when you’re not there to help me.”

Raising Special Kids is fortunate to have parent leaders like Michelle who are helping to fill the compassion gap for others the way Raising Special Kids did for her by sharing and illustrating their experiences in such impactful ways.

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