A mother’s search for a way to communicate with her son who has autism and is non-verbal has led to her publishing two children’s books and raising awareness about his journey with scoliosis and spinal bifida.
When Judith Abercrombie (30y) and Adrian Prins (30y) first heard their son Yadah’s (5y) prenatal Scoliosis and Spinal Bifida Prenatal diagnosis, they were thrown for a loop.
“I was told he wouldn’t have a normal life. He might not even be able to walk, he would live with constant pain and will need multiple surgeries as he continues to grow. So I had to decide if I want to continue with the pregnancy or terminate,” says Judith who has made it her mission to learn as much as possible about her son’s condition.
“Scoliosis is where the spine twists and curves to the side in an S or C shape. He had uneven shoulders, waist and hips. His rib cages were at different heights and one side didn’t develop completely. His entire body leaned to one side,” she explains.
His diagnosis did not end there, with the addition of spinal bifida and the possibility of developmental delays.
“Spinal Bifida is a neuro tube defect. They explained that the backbone that protects the spinal cord doesn’t form as it should. This often results in damage to the spinal cord and nerves and we were warned that spinal bifida might cause physical and intellectual disabilities,” says Judith adding that he was then diagnosed with autism at the age of three.
“Writing a children’s book was never something I thought I would actually do,” she says, adding that the last five years have been filled with things she never thought she would do.
Judith, a Jeffries Bay-based business owner, originally from Kariega has made it her mission to support her son and raise awareness for his cause. From fundraisers to awareness campaigns and events, she has been working tirelessly to be the voice for her non-verbal baby boy.
“The idea for the book started when I had to prepare my 3-year-old non-verbal Autistic boy for what was about to happen to him, in such a way that he would understand. So I started looking for children’s books online regarding his situation but I couldn’t find any,” she says.
Judith says that she found books about different types of disabilities but nothing she felt they could relate to.
“The day before a surgery he was scheduled for we were laying on the couch and as he looked at me holding my face and I decided to ask him; ‘Baba do you know why we are here, do you know what’s happening tomorrow?’
“As he continued to stare at me listening to my every word I said. ‘You know how much pain you always have and fall over when you run or jump. Well, tomorrow the doctor is going to fix your back, make it straight and make the pain go away. But don’t worry he will put you to sleep and you will dream sweet dreams you won’t feel a thing. And Jesus will be there with you to protect you and to guide the doctor. And when you wake up you will be able to run faster, jump higher and play all day with your back all straight and no more pain’ This is how the idea of the books came about,” she said
Pain Pain Go Away… Is about scoliosis awareness and our pre-op conversation in preparation for the surgery and On Your Tippy Toes… Is about autism awareness. It’s written in a poem form about the lil things that he does which are also early signs of autism in toddlers.
Judith says that her journey has taught her patience, understanding, acceptance, to be kind, to be resilient like Yadah and has drawn her closer to God.
Judith has gone on to write a third book, Scoliosis, Autism and Me.
“Scoliosis and Autism awareness is important to me cause of my son. This book has been written to educate and create awareness about diversity. To promote an attitude of tolerance, acceptance and inclusiveness among our children. As Parents, Carers, Guardians and Teachers it’s our responsibility to educate our children about “special needs” and neurodiversity. To equip them with the knowledge and confidence. To love and be kind.”
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