had the opportunity recently to meet Simone Brenneman who is the author of two books about her children with autism, Her first book Effervescence A True – Life Tale of Autism and of Courage tells the story of her daughter Genevieve during her early years. In The Castle We Called Home, we learn about her son Hayden’s early years. Throughout their lives Simone has acted as a translator and guide both for and about her children by explaining the world to them, and explaining them to others. Her books offer us insight into the world of autism In addition to being a parent of 4 children, Simone is also a yoga and dance instructor, and works as a special education assistant in the Lower Mainland.
While her children were growing, she kept journals and diaries of her and their experiences as a way of relieving stress but also as a means of keeping the events straight in her mind. They became a means of looking for patterns in their behaviour. Her reasons for writing these books was not to write a how to book for parents with autism but rather a book of “paintings and illustrations” that will help others enter the mind and body of autism because although each child is unique there are many common threads that connect them. They are her tales of the courage and evoling of her children and herself. Through her books Simone has been able to portray the complex world that has been her home for a long time in a very illustrative, readable manner.
Simone describes experiencing unique differences in Genevieve very early on as her pregnancy was different than her two earlier pregnancies. She depicts Genevieve as being uniquely playful yet also like a person who couldn’t stay comfortable in her surroundings. As a baby Genevieve was very content to play on her own with her animal figurines. Simone describes how Genevieve would spend hours in front of the bathroom mirror lining up them up. Some of other of Genevieve’s behaviours were also puzzling to her family. She was slow to talk and when she did it was a whisper until one day she began to speak in full sentences. Her parents questioned her hearing as she frequently did not respond when they called her name. Simone relates how she and the older siblings sometimes forgot Genevieve during their play as she demanded little attention and preferred to play contentedly on her own in isolation. Simone describes how on one occasion she found Genevieve luxuriating rolling in the mud in the long flowing princess dresses she loved to wear. Many things were perplexing about Genevieve including her frequent and unpredictable temper tantrums that seemed to occur out of the blue and transformed her from a captivating calm happy child. As a result the family learned the art of walking on eggshells to avoid not setting her off.
When Genevieve was two and a half Simone had a revelation that they were losing her. She describes this as changing her world forever. She sensed that Genevieve wanted to be part of their world but didn’t know how Simone became more determined than ever that she needed to find a way to reach Genevieve. She proceeded to study her and turned to fantasy as a way of reaching Genevieve. She had always been fascinated by the way that Genevieve used toys in unique and unusual ways. Fantasy, movies, fairy tales and nursery rhymes were the bridge for the Genevieve. She attempted to step into her world in a variety of respectful ways. She began animating everything. Instead of telling Genevieve to get her shoes, she would say “Shoes where are you?” Genevieve responded to this approach which then allowed her to welcome other items into her life. Later she began to relate to what she saw on tv or in comics to her relationships with her siblings. Genevieve developed a strong bond with her mom as felt that she was trying to step into her world unobtrusively and respectfully. Simone put her creative skills to use is setting up a costume room and organizing parties with her children which allowed them to all work together. Genevieve’s love of fantasy and art continues today as she is making a career as an artist.
Simone commented that when she watched Genevieve and Hayden, documented and took their leads, she found it quite easy to get into their worlds as it came every instinctively to her. What was difficult was "getting out of their worlds" because living so deeply, a lot of their behaviours transferred on to her, such as making eye contact or becoming so incredibly accustomed to responding to settings or environments almost like someone with autism might, such as immediately surveying the sounds or people that they were confronted with. Also what was very difficult was that she literally had to reprogram herself to not scrutinize her children so deeply once things got better by not always taking notes or documenting.
Simone describes Genevieve and others with autism as having “social strings attached”. She believes they experience an ongoing struggle throughout their lives because on the one hand they are struggling to keep the world out but on the other hand are wanting to join in life. She sees that this has and will continue to be a struggle for Genevieve.
It was while Genevieve began attending preschool that a suggestion that Genevieve may have autism was first presented. An assessment and confirmation of the diagnosis began a long period of outside support from psychologists, behaviour support and in home support. This had both positive and negative impacts on their family lives. The help was needed and appreciated but there were also challenges with people coming and going from their lives. For Genevieve the introduction to an art therapist when she was ten gave her a new interest which she continues to engage in till now.
Simone and her family sensed differences Hayden from early on after birth. In his early years he was happiest when alone with him mom. He was diagnosed with autism and Cri du Chat disorder. In his early years at home and school he experienced much difficulty due to aggression. He was then home schooled until he was fifteen then began attending school for a period of time each day. Over the years, the aggressive tendencies have disappeared. Hayden has not shown any aggression for the past seven years. At the present time he enjoys his weekly recreation outings with his peer group. In their growing up years many struggles ensued between Hayden and Genevieve. Simone says that she often felt that Genevieve was losing out due to the attention and time spent in dealing with Hayden. At the present time both Genevieve and Hayden continue to live at home. Genevieve has a separate apartment and art studio in their home.
One of the highlights that occurred to Simone after Effervescence was published was a telephone call she received from Temple Grandin congratulating her on this book and telling her how much she enjoyed reading it.
Her advice to other parents is to start writing as it is therapeutic but also helps to have documentation ready for professionals, keep information straight in one’smind and allows one to see patterns of behaviour and what they might mean. She stresses the importance of finding out what motivates one’s child as she believes that is where the key to unlocking the door to understanding begins. Although she has lived and worked with individuals with autism for many years she feels that there is always something to learn and the journey is always fascinating.
Simone wrote in Effervescence that her driving desire and prevailing philosophy is to ask anyone who is connected to someone with autism to look beyond what is right in front of them and to stand back and watch and listen and feel them and their world. Live in their world and learn from them. She believes that she has learned as much as she has taught.
It was a pleasure talking with Simone and reading her books. Do you have a book to recommend written by a parent or individual with autism that you would like to share?