Lily-Rose (or just Lily as she is called) is an eight-year-old girl born with Dandy-Walker Syndrome and cerebral palsy. She was orphaned shortly after birth when she was left abandoned in an open field in Orange Farm. Since age three months, she has been part of mom Carene Naubereit’s life.
Carene, a single mom, now a qualified occupational therapist, started volunteering at TLC children’s home as a teenager and was introduced to Lily in 2013. She soon fell in love with the baby girl and became her foster mom when Lily was three years old before legally adopting her in 2021.
Dandy-Walker Syndrome is a rare congenital brain malformation whereby the part joining the two hemispheres of the cerebellum (hindbrain) does not fully develop. This can lead to a developmental condition called cerebral palsy (CP), which affects a child’s muscle tone, movement, and coordination. It is usually the result of a brain injury early in life. The brain cannot properly send messages to muscles about how to move in a smooth, coordinated manner. Children with CP usually have difficulties in all areas of development, including feeding, playing, talking, walking and thinking.
Carene had noticed that baby Lily was not developing like the other babies her age, and that she had feeding difficulties. Lily was finally diagnosed at age 18 months at Chris Hani Baragwanath Hospital. Despite this, Carene never doubted that she wanted to be part of Lily’s life.
“It was a big responsibility, but it just felt right. Even though I’m a single mom, I have great family support,” Carene said when asked about adopting Lily.
Lily can be described as a child with special needs and a neurodevelopmental delay. You would quickly notice the difference if you had to compare her to a typically developing eight-year-old.
“I would say the most striking difference is her inability to move – to sit, stand, walk, crawl or even roll,” Carene explained.
“She is in a specialised wheelchair. She can eat or chew on very soft foods, but she predominantly eats a puree diet and needs to be fed. She can bring certain finger foods to her mouth. Lily understands most verbal language, but she can’t communicate it.”
However, recently, Lily has made some great progress in her ability to communicate her needs. With the help of an alternative and augmentative communication system (AAC), she can now say things like “I need the toilet” or “I have something to say”.
“She’s got an eye gaze system and a book that she uses when she is unable to use her eye gaze, then she also has buttons that she uses,” Carene said.
“Lily has two buttons on her wheelchair which she can press, and a pre-recorded phrase is played.”
Raising a child with special needs also comes with a large financial responsibility. Lily has a multidisciplinary team of experts that contribute to her care, including a paediatric neurologist, a general practitioner, a physiotherapist, a speech-language therapist and an orthotist/prosthetist. Luckily, mom Carene can also step in and be Lily’s occupational therapist while she encourages her to be as independent as possible.
Mom also has to foot the bill for special schooling, specialised assistive technology and equipment and chronic medications that Lily needs. A large percentage of this is not covered by medical aid, although Lily is lucky enough to be on her mom’s medical aid. Before that, she accessed the state hospital sector, which could only provide a limited service.
“If Lily did not have medical aid, it would be impossible to afford most of her care,” said Carene.
As Lily grows and develops, her needs change. She still requires full-time care at the age of eight and needs help with virtually all daily tasks.
“As she’s growing, that’s something that becomes harder…managing the transfers from her chair to the bed, from the car back to the wheelchair or from her bed to the toilet,” Carene said.
“Luckily, we’ve also got a caregiver at home helping out with Lily, which makes a big difference.”
An additional challenge is watching how other adults or children relate to a child with special needs. It can be painful for a parent to watch other parents ignore their child or children refusing to play with her as they are scared because she looks different.
However, Carene quickly points out what a blessing it has been to have Lily as part of her life.
“There are so many blessings! When you look at Lily, she is just pure joy…I wish I could see the world through her eyes just to see the good in life and smile and love,” said Carene.
“It is amazing to watch her grow and learn and achieve things that others thought were never possible.”
Tips on how to talk to your own kids about children with a disability:
Use matter of fact language
- Some people are born with disabilities. Explain simply to your child that sometimes babies are born with disabilities. But at other times, people develop disabilities later in life.
- People with disabilities aren’t sick. Explain that a child with, for example, cerebral palsy isn’t ill. You don’t want your child to think they might catch a disability.
- There’s nothing wrong with people with disabilities. Your child may ask questions like, “What’s wrong with that girl?” Explain that a child may have trouble talking or walking, but that does not mean there is something “wrong” with them.
Explain adaptive equipment
- Use practical examples of why, for example, a classmate uses a hearing aid
- Tell your child to refrain from playing with a classmate’s assistive device such as a wheelchair
Point out similarities
We are more the same than we are different
Teach kindness and sensitivity
- The golden rule still applies: do unto others as you would like to be done to you.
- Make sure you are a good role model.
Ask before helping
Your child should always first ask before jumping in and attempting to help someone with a disability. “Is there anything I can do to help you?”
Admit that you don’t have all the answers
- Sometimes, your child may ask a difficult question such as “why are there children born that can’t walk?”
- It is okay to say that you do not know the answer. You can always gently ask someone else who may know more about disability.
Adapted from https://www.verywellfamily.com/how-to-talk-to-kids-about-disabilities
