“Rae is charming, happy and social. She definitely has a sense of humour and loves to perform.” – Chris and Sarah, Rae’s parents.
Mischievous and mirthful, five-year-old Rae easily becomes the centre of attention whenever she enters a room, finding ways to make her captive audience laugh at her entertaining antics. When it comes to music, however, Rae prefers to listen, rather than perform. Although, she is quick to get up and start dancing. Rae loves motion, and is perfectly happy when she’s on the swings. She is all movement and play, despite the challenges she has had to face.
Rae is missing a small piece of one of her chromosomes. This means that she’s missing certain genes, such as a gene involved in suppressing tumors, which is associated with a condition known as Neurofibromatosis 1 (NF1). NF1 can present in a wide variety of ways. Those with NF1 may develop a few or many small bumps on their skin or may struggle with these and more complicated internal tumors. It’s unclear how NF1 will affect Rae.
The complicating factor is that Rae is missing other genes, which has resulted in global development delay. This affects her gross and fine motor skills, speech and cognitive growth. Rae develops at a slower rate than typically developing children. At five, she talks like a child learning to talk. This cognitive delay is compounded by her low muscle tone that affects her physical abilities including the complex set of muscle movements required to form verbal language.
Rae got off to a great start when she attended Holland Bloorview Nursery School – High Park site, just before turning two. The consultative therapy team included support services from physiotherapists, occupational therapists, speech language pathologists, and communicative disorders assistants. This multidisciplinary team supports both teachers and families in the analysis of each child’s needs.
“This program was life changing for us,” says Chris, Rae’s dad. “Before Holland Bloorview, we were receiving completely separated programs, good in their own right but nothing consolidated into one place like Holland Bloorview. Everyone there talks to each other and shares information, focusing on the right things.”
One staff person was able to recommend Holland Bloorview’s music program for Rae, knowing that she would flourish given her personality. The music program not only helped foster Rae’s love of music, it taught her to take turns and listen while someone else is playing or talking. It also helped her oral skills, as she loves to sing along.
Rae, who loved school from the get go, was accepted into Bloorview School Authority when she was four. The school covers Kindergarten and grade one and applies the same integrated approach as the pre-school program. However, because the school is located at Holland Bloorview Kids Rehabilitation Hospital, it offers greater access to the therapeutic programs, such as speech.
Speech is Rae’s biggest challenge, but thanks to the dedicated attention of a speech therapist at Bloorview School Authority, Rae has made big improvements. When she once used single words, she can now put together more complex phrases, using more than three or four words together. She’s also learned the alphabet, numbers, colours and other kindergarten curriculum and has improved her gross motor skills by learning to ride a bike. Her social skills have also improved. With the school’s strong encouragement, Rae now approaches other kids to instigate a conversation or to play.
“With Holland Bloorview, we feel that we’re in good hands,” says Chris. “There is a much stronger feeling that we’re doing the right thing and we’re doing all that we can for Rae.”
For Rae’s parents, Chris and Sarah, Holland Bloorview provides them with a place where they don’t feel so alone with the daunting challenge of caring for a child with a disability.
“Being a parent is such a huge responsibility,” says Sarah, Rae’s mom. “Imagine the added fear and challenge of having a child with special needs. Finding a place like Holland Bloorview, where they understand what we’re going through, has been so refreshing and relieving.”
Chris and Sarah may not know what the future holds for Rae, but the advancements that Rae has made as a result of her therapy and schooling at Holland Bloorview is helping her to realize her unlimited potential.
