Wednesday, August 08, 2007

MOTHERS STRIVE TO SUPPORT CHILDREN WITH CP




Peni Kusumawati didn't think that her first child would be anything other than a healthy baby. When the estimated due date came, she didn't feel any symptoms of labor, nor was she severely ill, so her doctor advised that Peni wait a little longer.

"But my (uterine) membrane had ruptured before I delivered my baby girl, Yasmin Azzahra Rahman. Later it was found out that the amniotic fluid was contaminated by my daughter's feces. She was overdue," Peni told The Jakarta Post.

Yasmin was diagnosed with athetoid cerebral palsy (CP), which results in involuntary, uncontrolled and uncoordinated movements of the muscles. All limbs are affected with jerky movements, and the child might also stumble when walking due to poor coordination.

For years and almost daily, Yasmin has undergone intensive physio- and occupational therapy, mostly at Pela 9 rehabilitation center in South Jakarta. She has also been prescribed at-home rehabilitation exercises.

Neurologist Dr. Dwi Putro of Bintaro International Hospital said that Yasmin had the potential to walk, although she would not walk as normally as other children.

Recently, the 7-year-old took her first steps with a walker.

Yasmin, who has two healthy, normal younger brothers, just began school at SDN 04 Cipete Selatan State Elementary School in Cipete, South Jakarta.

The school is an ordinary one, but it accepts children with special needs under the government's sekolah inklusi (inclusive school) program.

Although government support is still limited, Peni is upbeat. "I am ready to cooperate with the school to provide more necessary support for my daughter," she said as she accompanied Yasmin to her first day at school.

With an IQ of 119, Yasmin has difficulty writing because of athetoid CP, but she is able to read and is considered able enough to compete among other students who have no physical disabilities.

That a child with CP can succeed academically is evident in the example of wheelchair-bound Susanne Ongkowidjaja, who recently graduated from the English Department of the Education Faculty at Pelita Harapan University.

Susanne has both quadriplegic and hemiplegic CP -- her four limbs are all affected, but the right side of her body is more severely affected.

Her mother, German-born Traute Ongkowidjaja, also had a ruptured uterine membrane prior to delivering Susanne, her first child. She was unaware that Susanne had cerebral palsy until her daughter was a year old.

"I gave my daughter therapy by myself," Traute said during an interview held at The Jakarta Post.

The treatment Traute administered comprised of Voita and Bobath. In Voita, she pressed certain spots of Susanne's body to stimulate the cells, while under the Bobath Concept she assisted Susanne in physical games and exercises to improve posture and reduce muscular stiffness.

Susanne, whose two younger sisters are health and without disabilities, attended SDN 09 Kayu Putih Siemens State Elementary School in Pulomas, East Jakarta. From the first to fourth grades, Susanne was accompanied and assisted by an aide studying at a teacher's college, who would lift up her body when she played.

"And I sat by the door of the class to help write the lesson," recalled Traute.

After undergoing an operation in Germany to fix her hip in 1993, Susanne attended the internationally oriented Cita Buana school in South Jakarta until she graduated high school in 2002.

"I had a difficult time as my (peers) seemed reluctant to approach and play with me, but my teachers were marvelous, as they treated me as if my wheelchair did not exist," the self-confident Susanne said in fluent English.

She finally earned her peers' respect during a fund-raising event at the Wisma Subud residential compound in 1999, when she succeeded in collecting a significant amount of money using a custom-designed tricycle.

Traute pushed her daughter to continue studying, and surveyed several universities in Jakarta -- only to find that they had too many stairs, which can be troublesome for her daughter. She said she then had a dream that "instructed" her to take Susanne somewhere in Karawaci.

So she enrolled Susanne at Pelita Harapan University, which had facilities that were more comfortable and suitable for her daughter.

"But I was bit shocked and sad during the first days at the university, because the lecturers always left the class immediately after lecturing," said Susanne, who turned 25 in March.

At university, Susanne regularly posted her essays on a "wall magazine" until people became aware of her potential.

She aspires to become an editor or translator, and added that she intended to submit some pieces to the Post.

She also participated in religious activities at Pelita Harapan.

"That is why Susanne has become very forgiving, particularly of her mother who has made a lot of mistakes...," smiled Traute, followed by Susanne's chuckling.

2 comments:

Anonymous said...

Mas Alpha,
I really glad and appreciate your posting. This is very useful information especially on Cita Buana school, that could accommodate children with special needs.
Jerry

Anonymous said...

Inspiring article!! It heartens anyone experiencing such a fortune to be more optimistic, keeping his enthusiasm to live in this beautiful world. It also reminds us to think that every single human being has potential and limit. What we (family, educator, society, and government) need to do is to provide a first-rate social, educational, economic and political scheme by and through which everyone could have achieved a better quality of life.
Salam. Hilman