Evelyn

Rocky Bay Physiotherapist and Program Coordinator of Rocky Bay’s ESIP, Ty Kowalski, says that Evelyn is making solid gains toward her goals.  

“When Evelyn first started in the program, she couldn’t sit by herself. Now she is sitting upright and maintaining her position whilst displacing her weight to reach for items, like toys,” says Ty.  

“She is also working toward crawling and getting stronger physically. Her grasping is developing, and she is making more sounds and forming more words.” 

Evelyn’s team sets new goals for her to reach every six months. After smashing her initial goals, Evelyn’s new goals to reach include being able to achieve a crawl position and maintain her weight independently; to work toward expanding her vocabulary to include 45 words; and when it comes to bedtime, will require her parents to lay on the bed to fall asleep fifty percent of the time, otherwise be in her room. 

“The goals we set are really specific to the individual,” says Ty.

“They are a component of their function that is a little above where the child is. For Evelyn, it was initially to sit by herself, then it was to go from lying to sitting. Now her physiotherapy goal is to crawl. 

“When she eventually transitions out of the program and into the National Disability Insurance Scheme (NDIS), it carries across and they can add more goals for her to reach.” 

Consistency is important when it comes to therapy – particularly with early intervention as participants need to feel comfortable and safe. Rocky Bay’s program sees therapists provide intervention in the home, so a child feels comfortable in their environment, and the family are afforded flexibility in appointments. Seeing the same therapists consistently also helps develop a bond between child and therapist, creating excitement around therapy. 

“I honestly wouldn’t of expected this much assistance before we started,” says Emily.

“Not only have we seen massive progression in Evelyn, but also friendships form between Evelyn and her therapists…When Ty went on holidays for a week, Evelyn was so excited to see him when he walked in for the next session. 

“As a family we understand what requirements need to be met for Evelyn’s age and future goals. The team look at all aspects of Evelyn’s needs and work together to create an enriched developmental program for her.  

“Not only have they changed her life, but ours as well.” 

After experiencing the journey of a diagnosis, and seeking support for her development through various avenues, Emily’s advice for other families is to play advocate and ask questions. 

“When we first received Evelyn’s diagnosis, we began to research it ourselves. We had lots of questions, so we got a pen and paper and wrote down everything we wanted answered, and that’s when we went back into PCH to ask our neurologist those additional questions. 

“There’s also an Australian group on Facebook for people with MD and that’s how we connected with other families in similar situations.” 

Emily says Evelyn has adapted well to her condition without even knowing it. Getting the intervention from such an early age has meant that Evelyn can continue to develop at her own pace and not miss out on enjoying the experiences of day-to-day life with her family.  

“Her neurologist said given her condition, she is in the best position possible. Although we still don’t know much about how her condition will progress in future…we are hopeful.” 

Evelyn will continue to be set specific goals throughout the program, so that once she transitions to the NDIS she will have had the best start possible. 

“Evelyn doesn’t miss out,” says Emily. “She goes everywhere with her sister…they love to play and be silly together. We don’t want to deprive her of the ‘every day’.