Carter and Camp Twinkletoes
Carter is almost seven years old and has a common type of JIA, oligoarthritis, in both knees and his wrist. One day when he was four, his parents watched him climb out of a swimming pool and noticed that one knee was the size of a large grapefruit.
“Within three weeks his movement and gait had complete changed and he was very uncomfortable,” said Carter’s mother Beth.
“Before he was diagnosed we thought he was lazy. For example, he would ask me to push him in the pram to walk 500 m to pick up his older brother from school. But now we know he wasn’t lazy, he was in pain and by the afternoon that 500 m looked like a marathon to him.”
Beth is proud of the way Carter overcomes his condition by adapting his play to his abilities. “If he’s having a bad day and his friends are running a race, he’ll become the coach or time keeper. He does karate a few times a week and if his wrist is hurting he’ll try a one-handed push up.”
Carter’s Kindy classmates all know about his condition and Beth said that his school is very supportive to his needs. “I provided children’s books on JIA to the school which the teacher has read to his class, pointing out that everyone is different and wouldn’t life be boring if we were all the same. They even included some of the books in their reading corner,” she said. “If Carter is having a bad day at school they are happy for him to just lie down in the story area and listen to what’s going on so he doesn’t miss out. Carter wants to go to school no matter how tired or sore he is.”
“During his last flare up when he could only straighten his legs to 60 degrees, I would take him to school in a pram and he would drag himself around at school as long as he could before I would come and get him.”
Sometimes Carter needs extra time to get going in the morning and he’ll sit in front of the heater to relax his muscles and mobilise his limbs. “We give him hugs and encouragement, and on bad nights his monkey heat pack is always on hand,” Beth said.
Carter realised that he wasn’t alone in having arthritis and that it’s OK. He makes new friends at the camp and doesn’t have to hide or feel worried about his condition.
Carter’s family have attended Camp Twinkletoes for the past two years and Beth is amazed with the support it offers her family. “Firstly, Carter realised that he wasn’t alone in having arthritis and that it’s ok. He makes new friends at the camp and doesn’t have to hide or feel worried about his condition. He has an awesome time. Camp Twinkletoes also shows him what he can learn from his condition such as inclusion, empathy and self-care. Secondly, it’s great to be around other parents who get it so I don’t have to explain everything. When we attended early this year, I loved that I wasn’t the new mum to this disease and I could encourage the new parents and give them advice. Some were in shock from learning their child’s diagnosis and the love and support everyone gave each other was amazing. The speakers are top notch and I always feel so uplifted and equipped after Camp Twinkletoes.”
Carter’s nine-year-old brother Tyler also thinks Camp Twinkletoes is a blast. “As soon as it’s over Tyler and Carter ask me if they can go again next year. Tyler is not looking forward to the day that Carter is old enough to go to Camp Footloose because he won’t be able to go with him. Camp Twinkletoes is a total hoot for the whole family, the arthritis crew just make it so special for all of us,” she said.
Camp Twinkletoes is an annual event run by Arthritis & Osteoporosis NSW, the peak body in the State for people living arthritis and other musculoskeletal conditions. Camp Twinkletoes is designed to help families caring for young children with juvenile arthritis. The program has four essential elements:
- Education for parents, presented by leading health professionals such as Paediatric Rheumatologists, Occupational Therapists, Physiotherapists and Psychologists.
- Fun for children with juvenile arthritis
- Much-needed attention for siblings
- Experience-sharing between families
For a family with a newly diagnosed child, the future is unclear. Camp Twinkletoes supports families to adapt to this uncertainty and build the mental strength to care for their children in the most positive way possible.
Applications are now open for Camp Twinkletoes 2018!
When: From 6:00pm Friday, 13 April to 10:00am Sunday April
Where: Drummond House Accommodation, Royal Far West, 19/21 South Steyne, Manly NSW