One step further: graduation just a beginning for teen with Rett syndrome
June 12, 2013
FORT LEE, Va. (June 13, 2013) -- Chandra Spitzer said she was told by doctors that her daughter Samantha wouldn't live past 2 years of age.
When she reached 2, her life expectancy was changed to 5.
When she reached 5, it became "'She would never walk; she would never talk.'
"'She would never learn anything.'"
Now 18 years old, Samantha has survived the early-age setbacks of Rett syndrome, an incurable form of autism marked by slow development, decreased motor skills and problems walking.
With the help of her father, Sgt. 1st Class Robert Spitzer, Samantha walked across the stage of the Prince George High School gymnasium Saturday to receive a state of Virginia special diploma. Her mom melted at the image.
"I was overjoyed when I heard her name being called and proud that her father helped her walk across the stage to receive her diploma," said Chandra by email. "My mother was there to watch and cry with me with swirling emotions of pride, gratitude, thankfulness and just pure happiness. I couldn't hold back my tears."
Samantha, who her father said is so affectionate "that she has no qualms about giving total strangers a hug," has various disabilities related to her condition. She lacks motor skills, but she has learned to write her name. Her ability to walk is limited, but she was improved to the point of riding a bike with training wheels and walking a 5K. Her cognitive abilities are at the level of a young child, yet she has shown marked improvement in that area as well, said her mother.
Despite all of her progress, Samantha still needs care 24/7 and the support of her family members to live a meaningful life.
The journey to provide that life has been a challenging one for Samantha's parents and her five siblings. Spitzer, assigned to Headquarters and Headquarters Company, CASCOM, said his daughter's ability to learn hasn't been helped by the turbulence caused by a typical military career.
"Obviously, moving from post to post has been a struggle for her, because, given the nature of her condition, she doesn't like change," he said. "So when she gets comfortable with say a teacher or teacher's aide, she wants to keep things as they are."
The Spitzers have been assigned to other installations in Texas and Colorado and Samantha has attended at least seven different schools. With each change of station, each new house, new neighborhood, new school and new teachers, came the expectation that all she has learned at one location would be lost at another.
"In a sense, she takes a few steps back when she enrolls in a new school, and she has to kind of work her way up from there," said Spitzer.
Samantha has shown much improvement since being enrolled at PGHS three years ago. "I love her teachers," said Chandra. "They've really done wonders for her." Samantha knows her numbers and alphabet, said her mother, "and is talking a lot more."
She also uses an iPAD tablet, which has allowed her to explore more learning opportunities, said Chandra.
"From what I've been told, she's making complete sentences using pictures on the iPAD. It does wonders for her. I don't have to try to figure out what she wants. She tells me now, and she never used to do that."
The Spitzers have gained the perspective that their daughter can learn, and considering that not much is known about Rett syndrome, have refused to submit to the notion that her intellectual growth is finite. Spitzer said he is determined to continue Samantha's educational path, fueled by the progress she has made over the past few years and highlighted by small successes such as writing her name.
"They (the teachers at PGHS) worked so hard with her fine motor skills," said Spitzer, "so for her to be able to pick up a pen, even if it was hand-over-hand, and write letters, understanding what the letters are, understanding how to put them together and writing her name is just an unbelievable accomplishment given the level and pace at which she learns. When we saw it first with our own eyes, it was just mind-blowing."
The Spitzers now have plans to home-school Samantha.
"We will pick up where she left off (at PGHS)," said Spitzer, "and if we can manage to make things a little more complex just to see what she's capable of, then so be it. It's going to continue on. Even if we have to dedicate more years for her to intellectually grow, that's what we'll do."
The Spitzers haven't ignored the social aspect of Samantha's growth, either. Recently, she attended the school prom -- accompanied by two siblings on each arm, said Chandra. Samantha has also been enrolled in the Special Olympics program.
With the understanding that their daughter will not have a normal life, the Spitzers are working to ensure she has a meaningful one. Samantha's graduation from PGHS is symbolic of their efforts -- one small step toward the horizon of their daughter's future.
"She will never get married," Chandra said of her daughter. "She will never have kids.
"Her graduation is all my blessings rolled up into one."