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Caroline: Rett Syndrome Doesn't Slow This Girl Down!

Posted Aug 15, 2018 - 3:29pm

"When she was eight months old, I had a nagging feeling something was off."

For Marta Conner, this was the first indication that something was happening with her daughter, Caroline.

Searching for a Diagnosis

"Our girls develop normally for the first year or so," she said, so while Caroline seemed to be hitting her development milestones, for Marta, there was still something not right.

"Caroline's verbal skills were slightly advanced, but she never crawled, stood by herself or walked," she noted. "I could tell she was trying, and she never stopped trying," but at 11 months Caroline was still not crawling or walking.

Their pediatrician recommended early intervention services for walking and/or crawling, and Caroline began working with therapists.

But around Easter 2011, when Caroline was 14 months old, Marta noticed something odd: Caroline was clapping – a lot.

"She'd clap her hands and stare at them, almost like it was involuntary, like she had not control over them. It's as if it was happening to her and she was confused by it."

In addition, Caroline would grab her toys to play, only to lose control of them. It's around this time when Marta's husband and their families started noticing, as well.

They took Caroline to her pediatrician, who performed a simple test: She gave Caroline her necklace…only for it to fall off her hands.

That's when the pediatrician first brought up the possibility of Rett Syndrome.

Understanding Rett Syndrome

Unfamiliar with RS, Marta began to do some research on the topic. What she discovered made it feel, to her, like "the worst possible scenario."

In the meantime, Caroline's muscular control progressed to the point that she couldn't feed herself anymore. By the end of May, she had lost her ability to speak, couldn't use her hands, became floppier and couldn't hold her toys.

In June, Marta and her husband consulted with a geneticist who noted that, based on what he was seeing, it was most likely Rett Syndrome; by the end of June the blood test confirmed the diagnosis.

Despite her initial fears for Caroline, Marta was determined to do everything within her ability to allow Caroline to express herself. Because earlier generations didn't have access to technology, they were assumed to not be as cognitively aware as other children. But Marta knew that Caroline was a bright little girl.

Right from the beginning, she said, "we would assume complete cognitive ability." She and her husband began looking at different systems to help Caroline communicate.

Finding the Right Communication Solution

With the help of Megan Aldrich at Washington Speech-Language Pathology Group and Teresa Dubovsky of Assistive Techworks, the family learned about PRC's Accent 1400 + NuEye eye gaze system. It didn't take long for them to realize that this would be the ideal solution for Caroline.

To help her prepare, Marta began practicing with Caroline by having her look at items.

"She began making choices with her eyes the same way she would with an eye gaze system," she said.

Their practice paid off. Once Caroline began using the Accent + NuEye, she took to it right away.

"Immediately Caroline got excited. It all just started clicking for her," said Marta.

Communication for Caroline

Since she's had the device, Caroline's communication at home and at school has continued to improve, reports her mom. In fact, she noted, her speech therapists, both private and at school, have observed major milestones in her ability to communicate. For example, in private therapy, Caroline has learned how delete words she selects by mistake, and “say” her sentence by looking at that top area on the screen.

"Caroline's ability to communicate has increased her self-esteem and level of happiness, which in turn brings a lot of joy to our family life," said Marta.

Even better, with the Accent + NuEye, Caroline can better advocate for herself, from expressing basic needs like thirst and pain to voicing her like or dislike of specific activities or circumstances.

At school, she will use her device to express basic needs (“don’t feel well” “want drink” “need bathroom”), as well as to participate in class (answer math problems, make comments relevant to the topic at hand, ask to be read to, let the teacher know when she doesn’t like something).

Or, said Marta…she just talks about her day.

Making Academic Progress

The Accent + NuEye has also given Caroline the tools to make significant progress at school.

"The device has helped Caroline reach her IEP goals around communication, socialization, writing/reading skills, and so much more," said Marta. "Caroline is also constantly surprising her teachers with her jokes and great comments in class. Even better, the system motivates her to express herself and communicate with her friends, such as letting them know to stop being so rowdy during circle time!

"If she's feeling healthy, she uses it constantly. It's given her a little more control over her world," said Marta proudly. "Something like this is really life changing. It's given her a whole lot of confidence.

"She's just doing great."

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