Macy: Rett Syndrome, AAC and Being Heard

Posted Oct 12, 2018 - 10:14am

“It really opened my heart.”

For Samantha Brant, her daughter Macy has been one surprise after another, beginning with finding out she was pregnant.

“Little did I think I would have any more children,” she laughed.

Sam, a hardworking, busy executive for a major retailer, was already the mother of a teenage daughter and just assumed she was done having children.

She assumed wrong, and approximately 3-1/2 years ago Macy made her appearance.

The Diagnosis: Rett Syndrome

Throughout her pregnancy, everything was normal, said Sam, including birth and Macy’s early months.

Macy and mom and dad

She eventually returned to work, and Macy went to daycare.

But when Macy was nine months old, Sam noticed that she wasn’t sitting up like she should.

Sam and her husband took Macy to physical therapy right away. However, noting her low muscle tone, the therapist recommended a neurologist – something the couple weren’t expecting.

“It was our first clue that it may be something serious,” she said. “We weren’t prepared.”

Despite a battery of tests, the family wasn’t receiving any answers. Macy continued to progress; however, her progress was extremely slow.

By the time their little girl was 15-16 months old, frustrated by the lack of answers, the family went through genetic testing.

When Macy was 17 months old, they finally received the answer: Rett Syndrome.

For Sam, the call from the genetic counselor was devastating.

“In my eyes, that was the worst of the worst possible diagnosis,” she said.

Sam’s New Mission

The family quickly learned that Macy’s genetic variant of Rett Syndrome was atypical. Unlike other Rett girls, Macy hadn’t gained skills only to lose them – she had never gained the skills to begin with, making the diagnosis that much harder to obtain.

The news was devastating to Sam. It took her approximately a year to come to grips with the diagnosis and all that it entailed.

“How is she going to be able to tell me anything?” she remembered thinking, worrying for Macy’s future. And so in order to help her daughter, Sam set out to learn as much as possible about Rett Syndrome.

With the help of her SLP, Sam was first introduced to AAC, which in turn inspired her to action.

“Here’s my new mission,” she determined. “Here’s my new battle.”

Macy, Rett Syndrome and AAC

In early 2017, Sam and Macy traveled to Topeka to have an AAC evaluation done.

After trying out different device and eye gaze systems, Macy took to the Accent + NuEye right away.

Accent device screen with mom awesome displayed

“She just blew me away,” said Sam, describing Macy’s reaction to the device. “We have loved it ever since.”

And so does Macy. “She can’t stop talking with her device,” said Sam. “Right now her favorite word is ‘Read.’ She loves to have the device read a story to her.”

Additionally, the device has helped Macy progress from 28 buttons on the screen to 36, and this fall she will be moving to the 45 – at only 3-1/2 years of age, marvels Sam.

“I feel like Macy is really learning,” she said.

It’s not all hard work, however! Macy, notes her mom, loves to play games on her device. In fact, she’s already mastered the available games and will be giving the Timocco-on-Accent games a try.

At school, Macy’s teachers have incorporated her device into their teaching, whether it’s creating a page with all her classmates’ photos for easy identification, or using the device in music class to call out instruments she would like to play.

Despite her initial fears, with her Accent + NuEye Sam is more confident that Macy will be able to express herself…and be heard, whether at home, or at school.

“The device gives her so much inclusion in the classroom and with the other kids,” she said.



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