Meet BRIANNA
“I was so afraid to send her to school,” says Brianna’s mom Heather. “What if something went wrong with her feeding tube? What if she gets hurt?” Heather has valid reason to be concerned about her youngest daughter. Diagnosed at 10 months of age with SLOS (Smith-Lenli-Opitz Syndrome), Brianna’s body lacks the ability to make or metabolize cholesterol. As a result, Brianna’s growth and cognitive development have been significantly delayed. Brianna began seeing Allison Bryan, a speech therapist at Racker Centers, at 18 months of age weighing only 9 pounds. “I remember vividly that first meeting,” recalls Allison. “Brianna was so tiny and would fall asleep mid-session or before I could even start!” Heather laughs and agrees, “There were so many times when I called Allison when she was on her way to our house and said, ‘Turn around, she’s asleep’.” Just exerting the energy to hold up her head exhausted Brianna. She was extremely sensitive to anything near her face, crying out if touched. Loud noises made her scream and hide. She did not walk or stand or interact with others. Rather, she would sit with her weight balanced on her outer wrists and watch others as they played with toys, pushing items away if they were introduced.
Over the next few years, Brianna made great strides beginning to trust and form bonds with others. She began using sign language and developed an increased awareness to cause and effect when playing with toys and completing activities. “In the last few years I have seen Brianna begin to identify pictures by pointing them out,” says Allison. “She also will imitate sounds and motions.” Brianna’s physical therapist at Racker Centers, Nancy Bruce, reports that Brianna’s range of motion and reflexes have improved greatly. “Initially she did not move much and did not do well when I would try to touch her,” says Nancy. “Eventually she progressed to sitting, then scooting, and weight bearing, pulling herself to standing and finally cruising (using pieces of furniture to move around).”
In September of 2010, Brianna began attending Racker Centers Cortland Special Education Preschool Program. Since then she has truly blossomed. “Initially she would want me to be within eyesight of her when at school,” says Heather, “but now I am able to drop her at class and leave and she is fine.” Indeed Brianna is thriving in her current classroom environment. “She is part of a busy classroom with other children and a wealth of stimuli and doing great,” says Nancy. Brianna, now five years old, is now walking with the support of a one-hand assist. The swing she used to dislike during physical therapy sessions is now one of her favorites. She can specify the toys she wants, shakes her head and is using more and more sounds to communicate. Her strength and speed have improved and her one-on-one aide Rita Dains says that her old tactic of bringing in musical toys from home is no longer necessary. “Now I just touch her hand to reassure her,” says Rita. Brianna has developed friendships with her classmates who now ask “Where’s Brianna?” if she is absent. Heather is anxious about her daughter’s transition to public school next year saying, “If I had it my way, she would stay at Racker until she is an adult!” However, she is also very excited that Brianna has made such strides and knows she will continue to have success, “She’s such a different child than she was a few years ago; it is amazing how far she has come.”
Photo of Brianna and her Mom Heather at the Cortland
Special Education Preschool
(Photography by Sheryl Sinkow www.SinkowPhotography.com)
(Story written by Dawn Bricen LaMorte www.sunrisestudiosdesign.com)
