For parents John and Joan, life has thrown them numerous challenges but they’ve managed to focus on the good.
WORDS CHRISTEL GERALYN GOMES
What do you do when you realise your precious little one will never grow into a fully functioning adult? That she will always need your supervision and care, and that you are likely to never have the freedom that comes with your children leaving the nest? Such is the case for parents of 28-year-old Vanessa, who is severely autistic.
“There is a whole spectrum of autistic disorders, from very severe to highly functional. Our Vanessa has severe autism, so our experiences and challenges may be different from those whose children are more functional in life skills,” says John, Vanessa’s father.
“For us, it’s like having a three or four-year-old child who never grew beyond that age, mentally. We cannot leave her alone in the house and someone always has to be around to ensure she does not do anything to hurt herself or destroy the home. No empty nest or ‘retirement’ for us,” he adds.
Vanessa was three or four years old when she was diagnosed. John recalls life then; “We started with quite a positive attitude and started reading about what therapies, medication or diets would help. We actually thought autism was something that we could solve, like any other life or medical problem.”
The committed pair hoped that Vanessa would one day be able to go to a mainstream school but even engaging a Special Education teacher who would go to Vanessa’s class to help her communicate did not help.
Eventually, Joan left her job to home-school Vanessa; “It was frustrating
for me when I wasn’t making any headway. I then realised that
I had to change my expectations of her progress in learning.”
Soon, Joan found that certain teaching strategies were more effective than others. “Vanessa learnt to read with flash cards and homemade books.” From the book What to do about Your Brain Injured Child by Glenn Doman, Joan learned new, effective strategies in managing Vanessa’s condition. “She became less hyperactive and more focused through physical therapy, doing exercises like the leopard crawl and swinging on the monkey bar. The physical exercises seemed to help remove some of the autistic ‘tics’ such as the repetitive spinning and eye rolling which she once had.”
When Hope Began to Fade
“It was when she was about 10 years old, that we realised that she would need life-long care,” said John. This was a deeply low and depressing point in his life. “The realisation came as a process rather than a specific moment. We were quite worried that no one will be willing to take her in after we are gone,” he said.
Joan recalls vividly one of Vanessa’s hyperactive spurts, which spelt disaster. “On one occasion, Vanessa was so hyperactive that she could not focus enough to feel hungry. For a few days, she hardly ate anything, though she drank a lot of water. That night, when driving home after a walk in the park, I stopped by a supermarket. As soon as the car was parked, Vanessa got out and disappeared! I later found her next to the car, on the ground. Seeing Vanessa having seizures was so frightening and I didn’t know what to do! Fortunately, a doctor nearby us saw us and helped me call an ambulance.”
“Vanessa recovered that very night, but since that incident, we have been vigilant about ensuring that Vanessa consumes milk or isotonic drinks if she was not able to take anything else.”
Twenty-eight-year-old Vanessa today remains behaviourally unpredictable. “Sometimes she regresses into hyperactivity; she talks to herself almost non-stop throughout the day. Other times, she is more focused and enjoys activities such as baking, doing worksheets, reading, rollerblading and going for walks,” says Joan.
Life with Vanessa is filled with details that other parents don’t have to worry about. “Knowing her tendency to play with shampoo, soap powder and to tear books, we have to keep the kitchen cabinets, kitchen and bathroom locked. We also lock the books we treasure in cupboards,” explains Joan.
Despite the autism, Joan finds joys in motherhood. “We experience closeness with her,” she says. “Vanessa shows her need for wanting physical closeness with us. When we come home, she wants to be with us. She likes to be hugged and enjoys doing activities and going out together. She seeks us out when she is in discomfort: when she has mosquito bites, she asks for ‘Mopiko ointment’; when she’s uncomfortable, she says ‘I got stomachache’, or, ‘I got headache’.”
John adds, “Vanessa is a lovely girl. She is mild-mannered and is generally okay even if she does not get what she wants immediately. She is verbal but speaks only to communicate her physical needs, like when she is hungry, needs to use the toilet or wants to do an activity.” Joan is thankful that Vanessa is able to take ‘No’ for an answer. “If she asks for talcum powder while I am busy, I could tell her ‘later’ and she would be fine with this,” says Joan.
A Lack of Understanding
Among the many pains that the parents of a special needs child face, is the lack of understanding from people who don’t understand the condition. “When Vanessa was young, her behaviour was more accepted in public, but now that she is an adult, it appears odder. We often get stares from people who seem to find her behaviour strange. Parents with young children even move away from her, as if thinking that their kids will be traumatised seeing such behaviour, or perhaps thinking that Vanessa will harm them. On the other hand, I feel heartened when I meet more enlightened people – they smile and nod to me to show solidarity and support,” says Joan.
“If Vanessa were a guy, we would have more misgivings about bringing her into public areas. Other people always fascinate her, and she tends to touch other children’s hair, or she would pick specks of dust or hair off of a stranger’s T-shirt. This may give rise to protests of ‘molest’. As it is, I apologise and usually, this would be accepted.”
John and Joan have over the years worked to create awareness about autism, lobbying for a better future for Vanessa and children like her. When asked what they wish people who don't have an autistic child knew about them, John says: “That there is a beautiful soul trapped in a body that can’t cope with the noise, pollution and scorn. It would be nice if people can befriend them, or at least just understand that they exist and they need help.” Agreeing, Joan adds, “An autistic person is a child of God just like you and me and they deserve to be treated with dignity and respect as fellow human beings.”
Eventually, John and Joan will have to leave Vanessa behind in the world, and their hopes for her are simple: “My hope for Vanessa is to be independent, such that she’d be able to buy food or items for herself at a store or take public transport. I hope that she will not be subject to any physical abuse for the rest of her life,” says John.
Joan agrees, saying, “What society sees is just the superficial symptoms of bizarre behaviours. They are not due to bad parenting. The autistic individual is actually crying out for help. We must stop becoming ashamed of our children. It is not our fault and it is certainly not the children’s fault.”
John ends the interview saying what any parent with an autistic child can relate to: “Actually, in the end, Joan and I are the ones who worry. Vanessa is probably more happy and contented than anyone else in this ‘normal’ world of ours.”