WE CARE

Reaching out

School offers special care for those in need

Story by ARUSA PISUTHIPAN and Photos by YINGYONG UN-ANONGRAK

At Rong Rien Ban Mae Nok, parents can share their experiences about what they have been through.

It was the one and only night Soavapa Toesangaun allowed herself to be buried in grief when she learned that her six-month-old son, the greatest gift she ever received, was suffering from severe congenital cerebral palsy.

"I held my son tightly in my arms the entire night. I cried and cried," recalled Soavapa, 36.

Sippakorn Toesangaun, or Nong Lookhin, Soavapa's first and only child, was born with severe cerebral palsy - a neurological disorder that permanently affects the body movement and muscle co-ordination of a sufferer.

Athough cerebral palsy does not always lead to the development of disabilities, a severe case like Nong Lookhin's complicates physical and mental development in children and can hinder their ability to walk.

Since birth, Nong Lookhin has had developmental problems. Although he has regularly taken medication and undergone physical therapy, the eight-year-old boy shows no improvement. After much suffering and frustration, Soavapa knows only now that there is no cure for her son's condition.

"The worst news came from my doctor, who suggested that I have a new baby because he said there was no chance Nong Lookhin would get better."

With rehabilitation and therapy, children with cerebral palsy can improve their motor skills.

Though overwhelmed with despair, the strong mother told herself that she would cry for only one night and that the next morning there would be no time for tears because she would do everything to fight for a better life for her son.

Soavapa started by seeking consultation from the Foundation for Children with Disabilities which, she said, provided her with much support. However, due to the skyrocketing number of children with disabilities waiting for support at the foundation, Soavapa decided to use her own house to establish Rong Rien Ban Mae Nok or Ban Mae Nok Home School, in 2005, as she wished to extend her help to children with cerebral palsy further.

With support from the Faculty of Medicine at Ramathibodi Hospital, Rong Rien Ban Mae Nok aims primarily to provide knowledge, emotional support and in some cases financial support for parents whose children fall victim to cerebral palsy.

"The first thing parents [of children with cerebral palsy] have to be aware of is that this condition can't be cured," Soavapa noted. "But with treatment and therapy, their lives can be improved. They will be able to progress their motor skills and the ability to communicate with the outside world."

Every Thursday and Friday, six or seven mothers bring their sick children to the school for therapy. They include, for example, an art session which involves mothers stimulating their children's perception by playing with toxic-free water colour paint.

At the school, mothers are also instructed how to enhance children's physical sensation by means of therapeutic massage.

According to Soavapa, the school's main focus is to play a responsive role. Soavapa, the school founder, first listens to every question and demand from the mothers of children with cerebral palsy. She then responds with advice appropriate for each child's individual needs.

If there is a group of mothers who want to know how to cope with stress or how to deal with children's seizure, for example, Soavapa will research the topic in order to answer those questions. She often invites specialists from medical institutes to lecture on topics that mothers are curious about.

This year Soavapa set up a training session of Dohsa-hou, a Japanese psychological rehabilitation method widely used for children with mental retardation, cerebral palsy and autism in order to improve their bodily movement and posture. This activity, Soavapa remarked, received incredibly good feedback and has generated much interest among the mothers.

"No equipment is needed to practice Dohsa-hou," explained the school founder. "Mothers just need to express their love towards their children through the sense of touch. With regular practice, children gradually learn to walk using their own technique."

"The most important thing is that we, as mothers, must not expect fast improvement."

Nong Karn and Nong Kit are twins who both suffer from cerebral palsy as the result of premature delivery. The boys' mother first visited Rong Rien Ban Mae Nok when the twins were only four months old. From the cute little babies having an excessive degree of muscle spasticity, the now one-year-olds show noticeable physical improvement.

"At birth, Nong Karn had internal bleeding in the right side of his brain which brought about irregular muscular contraction on the left side of his body. Nong Kit's condition was worse as both sides of his brain suffered internal bleeding which results in him experiencing severe spasms all over his body," explained Soipachara Emsuwan, 28, the twins' mother.

"After attending therapy sessions here regularly, both of them improved their physical and emotional health. Nong Karn has even learned how to say 'mum'," she said, beaming.

Apart from schooling children with cerebral palsy, Rong Rien Ban Mae Nok also functions as a platform for discussion, where parents can share their experiences and turn their suffering into knowledgeable insight which others can learn from.

"When mothers meet other parents who share the same experience, they become unyielding. Parents who feel they are at a dead end have a good opportunity to talk to others which prompts them to fight. It is as if they speak the same language," said Lagsamee Sunhom, a volunteer mother who helps lead activity sessions.

When it comes to taking care of children with cerebral palsy, patience is key, commented the school founder. Though mourning is a common reaction to the trauma, parents should not spend too much time on it because the sooner they stop crying, the more time they have to look for the most effective approach to ease their children's suffering.

Napaporn Juekred, 37, has spent the past eight years nursing her only daughter Nong Choompoo, who suffers cerebral palsy due to premature delivery following toxaemia of pregnancy. Napaporn conceded that she often feels so exhausted and discouraged that she wants to let go of everything. However, the other mothers kept telling her to be strong for the sake of her own daughter.

"Many times I lose hope. But if I stop doing this, who is going to take care of my daughter? So I have to be strong so that one day my daughter will be strong, too," she said.

Apart from focusing on physical and emotional rehabilitation, Soavapa said, the school also conducts academic-based activities. Nonetheless, her concept of "academic" is completely different from that used in normal schools.

"Our learning activities do not focus on writing and reading skill development. But we expect that our students should know what a watermelon looks like or what colours are, so that they understand more about the world around them," Soavapa explained.

Soavapa now has a concrete plan to form a group of volunteer staff who will be able to pass on the knowledge regarding how to take care of children with cerebral palsy to people on a larger scale. And she wishes that her plan will eventually grow into a respite centre, a shelter with a safe, homely environment where children with cerebral palsy will be well taken care of notwithstanding an absence of family members or carers.

"In the future, in case I won't be with my son, I want to make sure there is someone to take good care of him. This is the reason why I want to set up a respite service centre. In the future other children with cerebral palsy, even without parents, will be well looked after.

"Our children will be able to survive if we first learn to accept the truth. Our children will be able to be strong if we first learn to be strong. And our children will be able to develop if we first learn to develop," she said.

And she said that family love is, in fact, the best relief for the disorder.

"If family members love and understand each other, the love will be transformed into strength that enables the conquering of all difficulties on the road ahead."

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