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Living with Cerebral Palsy

Afidah Ayob aimed to be the head of department in her company before she turned 40, which was not an easy goal but she believed in her potential and was determined to reach the position.

Her world fell apart when her youngest child, Aiman was diagnosed with Cerebral Palsy, a condition with muscle disorders and which inhibits movement.

“I was a hardworking employee. After giving birth to Aiman, I was still working and my dedication paid off when I got promoted but then, it hit me. I realised I was no longer passionate about it,” said Afidah during a talk about dealing with kids with Cerebral Palsy organised by Institut Darul Ridzuan on Thursday, June 4. The talk was held at the institute’s office in Greentown Square, Ipoh.

Afidah quit her job although her employer rejected her resignation letter. She decided that it was time for her to focus not only on Aiman, but her two older daughters.

“I was disappointed with the education system in Malaysia. No schools, kindergartens, even schools for gifted children, wanted to take Aiman because of his condition. Although my son is not like normal kids, he deserves to get an education and that was when I decided to homeschool him myself,” said the mother of three.

Ummu Nadirah’s eldest daughter, Balqis, was diagnosed with Cerebral Palsy when she was three years old.

“We moved to United Kingdom because the facilities there were excellent. There is a school specifically for kids like Balqis and she gets to mingle and learn many things,” said Ummu to the audience.

Unfortunately, that was the first and the last time Balqis went to school. After moving back to Malaysia, Ummu hit rock bottom. She was upset because her daughter could not go to school since there is none in the country.

After four years of disappointment, Ummu, her husband and their six children moved to Miami, USA to get the best education for Balqis.

“Living in Miami cost us a bomb. Balqis’s treatment alone was about RM10,000 but we were lucky as it was borne by our insurance company.”

After staying in Miami, Ummu and her husband decided to move to Medina, Saudi Arabia. Although Miami was the best, they realised Balqis needed physical therapy.

“It was hard to leave Miami but I knew we’d made the right decision. Balqis seems happier and her therapy has been going well,” concluded Ummu.

The two strong-willed women hoped that there would be changes in Malaysia’s education system to help children with Cerebral Palsy. When asked about the advantages of having special kids like Aiman and Balqis, both mothers said that there were none.

“It teaches me to be patient, appreciate what God has given me and to embrace it,” said Afidah.

Both speakers had committed their experiences in dealing with children with physical challenges into writing. Their books entitled, ‘Lihat Langit Tinggi Menggapai Impian Aiman’ and ‘Balqis: Di Mata Kami, Di Sisi Nya’ are available online and at major bookshops.

Ili Aqilah

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