Meet Kennedy Rose

An Interview with her Mother, Alison

Kennedy Rose floats in and out of the dining room during a recent interview with her mother. Snacking, playing with toys, running to greet family members at the door, Kennedy strikes a visitor as behaving very much like the 5-year-old she is. It’s hard to imagine that only four years earlier, she was just beginning to walk at 23 months old and relied on a communication box to express her needs and wants.


At her 4-month-old pediatric checkup, Kennedy was observed to not be keeping pace with developmental milestones in relation to growth and gross motor development. The doctor recommended monitoring, and, at her next checkup two months later, recommended that her mother, Alison, get Kennedy a physical evaluation at ACCESS.


Alison remembers her evaluation day at ACCESS, recalling that the special educator and therapist observing Kennedy were “down in the floor with her, asking me lots of questions, and really looking at the whole picture and thinking globally about Kennedy’s development beyond the physical issues that spurred our visit.”


Around the same time, an analysis revealed that Kennedy has a chromosomal abnormality that affects her overall development. Faced with a condition so rare that, to date, she has found only one other family halfway around the world with a child with a similar condition, Alison wasn’t sure what to expect.


“We didn’t know what she would be able to do. Without published information on other identical chromosomal anomalies, it’s not easy to compare Kennedy’s progress to her peers and get a good idea of what her future looks like,” said Alison.


Kennedy was enrolled in therapy – first physical therapy to address her inability to sit up and avoidance of bearing weight on her legs, and later speech and occupational therapy to address a speech delay and sensory problems (she refused to have her hands touched, for example). At the time, Kennedy was also wearing a helmet to address plagiocephaly, a condition that flattened one side of her skull.


After more than a year in therapy, Kennedy was enrolled in ACCESS Preschool, starting in the infant program as an almost 2-year-old in Fall 2009. Using a baby walker and already measured and medically approved for an ankle brace, she wasn’t walking on her own at the time. Suddenly, Alison saw major changes in Kennedy’s progress. Kennedy was walking by Thanksgiving, and, having demonstrated progress in key areas, was moved into the toddler class in the spring. Although it was planned to have her repeat a year in the toddler class, she showed enough progress to be moved to the 2-year-old class, her chronological peer group, by Fall 2010.


Impressed with the team approach to therapy treatment and education, Alison reflected on the first years at ACCESS:

“The team at ACCESS, who spent hours with Kennedy each day, had a sense that she was capable of much more, and they pushed her. They encouraged me to do the same, and Kennedy responded in a big way,” Alison said.


Immersed in a multi-sensory curriculum, Kennedy’s speech “took off at 3 and a half – the result of ACCESS speech therapy. She went from very few words to using her words, super-fast,” Alison recalled.


Other improvements followed as Kennedy worked on skills of self-care, including expressing needs.


“So many staff members go great lengths to individualize care,”Alison said. “About a year and a half ago, Kennedy struggled to get ready in the morning. ACCESS speech language pathologist Ashley Powers made a manipulative picture symbol chart customized to Kennedy’s morning schedule at home. She even went so far as to ask me what the breakfast choices are and made a symbol for every one of those. Ashley taking the time to make that board made my life so much easier, and eventually, we didn’t have to use it anymore; it helped us establish a routine and the opportunity for Kennedy to take on the task of getting ready by herself.”


Citing her “graduation” from physical therapy about a year ago, Alison noted that Kennedy now runs, jumps, takes a dance class, swims, rides her scooter and jumps on her trampoline. She is learning to recognize letters and the sounds they make with the help of the ACCESS Preschool curriculum and participates in class.


“It’s amazing to her dad and me, along with the rest of the family, that she’s doing all the things she’s doing today,” Alison said. “Now we can’t think of anything that she won’t be able to do.”


Asked what advice she would have for other parents of children who are missing developmental milestones, Alison shared, “If you think there’s an issue, definitely talk to your health care provider. Be willing to listen, and be willing to speak up and tell your doctor what you think your child’s needs are as well. You have a right and responsibility to be an advocate and ask questions. Make sure you understand what’s going on medically and educationally. And, take care of yourself. Where siblings are concerned, be mindful that we all learn at our own pace, and we learn differently.”


Kennedy’s older sister, 12-year-old Jules Rose, offered up advice as well: “Kennedy is still working on skills in some areas, and it can be frustrating. Always try to be patient and understanding.”


Asked to sum up Kennedy’s experience so far, Alison expressed thanks.


“I’m glad we went to ACCESS when we did, [when Kennedy was six months old]. Otherwise, I’m not sure she would be where she is. I’m grateful my pediatrician sent us here.”


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