A Child's Story
Elizabeth has cerebral palsy as the result of an acquired brain injury which she received in the first few weeks of her life. This means she has delayed speech, poor balance and can’t walk or get in and out of the bath. When she was diagnosed she wasn’t expected to smile or walk.
“We had been asked to care for her older sister who was three years old at the time and we were told that there was also a baby who was not expected to survive the night. As a result of an acquired brain injury, this baby was blind and deaf with cerebral palsy. We were told that she was just ‘a take home and pass away bub’.
We brought her home, ignored the advice of professionals who told us ‘not to get attached, just set the alarm and feed her.” Because she was both blind and deaf, I put her in a sling and held her on my chest, so she could feel the contact. Then I remember, one day she looked up at me. And I knew she could see me. Her eyesight was coming back!"
The physiotherapist at Port Macquarie Hospital introduced Amanda and Elizabeth to TAD volunteers, Mayo Brumby, John Crimmings and John Wallace. Since then, they have made a number of items for Elizabeth: a special standing frame with leg wraps, a TAD Rawson Table and Chair set, a toilet surround frame and a body stocking to help her sit properly. Each item was built to meet Elizabeth’s exact height, weight and therapeutic needs. Each item was also made more appealing. A touch of pink painted here and there and even sequins and glitter to transform a body stocking into a special ‘mermaid’ suit.
“As a mother who had never had any experience with disability I was shocked at the price of commercial equipment. Also, all the standard disability equipment screams ‘disability’.
We don’t want Elizabeth to be defined by her disability. The TAD equipment is not only so much cheaper, the volunteers go to so much trouble to make it look pretty and attractive. Before the TAD table and chair set, Elizabeth could not sit up at all. Honestly, considering we had no funding back then, I don’t think she would have progressed without simply being able to sit up. It meant that she could interact with her peers socially, role play and do all the things children need to do to grow intellectually.
The TAD standing frame helped her build up the bone density in her legs and strengthen her muscles. It is hugely important to get the right equipment at the right time. We get funding support for the equipment we need. When you consider that we can get approval for $200 for a toilet surround stand set so much faster than approximately $4500 for the commercial equivalent, it means that Elizabeth can get the independence so much faster than if we have to wait until funding is approved for the more expensive commercial item.”
Today, Elizabeth is just one of Amanda’s seven children. Elizabeth does not quit. She never gives up and neither has her family.
“What do I hope for Elizabeth? You know what I really hope? I want her to lead a life like anyone else. I want her to be able to participate, to walk unaided, to twirl in ballet shoes and dance. I want her to one day fall in love, get married, have a family – do all the things that we take for granted.
What would I say to another parent of a child with a disability? I would say, don’t lower your expectations. Don’t let the disability define your child. If they can’t walk to get what they want, let them find another way.”
Read more about our Custom Designed Equipment Service provides a range of items such as modified cots, prams, change tables, supportive seating, bath seats and much more to enable people with disabilities and seniors to live more independently.