Below is the full transcript of my interview with Ms. Valery Koh, a mass communication student from INTI College for her university project.
I decided to share this interview as the interview questions captured most of the updates on ORKIDS and a bit of Arif’s progress and how do we go along with his progress.
Hopefully someone can benefit from this interview : )
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How did you come about to getting started with this project? What was the main inspiration & purpose?
Project P7 started off when a group of parents which were serving as Kiwanis Down Syndrome Foundation – National Centre (KDSF-NC) Parents Support Group committee members were discussing about their children’s future once they have graduated from KDSF-NC. At that time there were not much of an option for learning disability education for children aged 7 and above and the education offered by the government schools running special education classes are found wanting.
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Can you briefly go through the journey of making this project a success?
I wouldn’t want to declare that Project 7 is a success. It’s for the rest of the parents who have the faith in sending their children to ORKIDS to decide whether the project is a success. But at least for me, I would see the effort taken by committee members, teachers, other parents and those who have been supporting us all these while by collaborating and putting our children’s interest above everything else to be able to provide an alternative for our children is already considered a success. Seeing the glow of enthusiasm of these children as they are being greeted by their ORKIDS teachers in the mornings for me, is a sign of success!
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As far as obstacles and challenges goes, what were the major ones you faced in the formation of this project?
Running an NGO school, with all committee members being volunteers with their own careers and families (with special children) to take care for is a daily juggle for all of us. I wish more parents can chip in and take turns to bear the responsibilities together, as ORKIDS is a good platform for social empowerment amongst parents with special children. There are a lot of ideas and opportunities out there, it’s just that we are short of people to implement and make it a reality.
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Are you satisfied with the outcome and achievement of this project currently? Are there any plans in hand?
I think that P7 has reached its objective in providing education to special children aged 7-12 years under the learning disability spectrum. However, the centre is skewed to only having Down syndrome students, as opposed to other learning disabilities; such as ADHD, autism, slow learner etc., perhaps due to our background of coming out from a Down syndrome learning centre.
Another dream of mine is to kick-start Project 13, which is going to cater for students with learning disabilities aged 13 and above. This will be really interesting, as we are looking into vocational trainings that would train our children specific skills for them to make their own living.
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It was a rather challenging journey to arrive to this stage, what was the motivation that held you on all this while?
Personally, I draw strength from my religion. In the Holy Qur’an, there is a verse (Al-Baqarah, verse 286) which states:
“Allah does not charge a soul except [with that within] its capacity. It will have [the consequence of] what [good] it has gained, and it will bear [the consequence of] what [evil] it has earned. “Our Lord, do not impose blame upon us if we have forgotten or erred. Our Lord, and lay not upon us a burden like that which You laid upon those before us. Our Lord, and burden us not with that which we have no ability to bear. And pardon us; and forgive us; and have mercy upon us. You are our protector, so give us victory over the disbelieving people.”
I have a belief that, nothing happens without a reason. For me to be working with these great parents to form a school for our own children and for others to benefit as well is a blessing.
Surely, it is not an easy journey for all of us, but if God has selected you to lead and champion this cause, He would not have entrusted you if He has no confidence in you to bear the responsibility.
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How does the project operate? Where do you get the funding to do what you do?
Orkids is a registered society under the name of ‘Persatuan Kebajikan Anak-anak Istimewa Selangor’. The office bearers (committee members) consists of parents with special children (so far, but we don’t restrict the committee members to only parents of Orkids). The committee members will meet once a month to discuss any issues or agendas for the month and we will hold an AGM once a year for all ORKIDS members.
We also have a management team, which consist of the Centre coordinator who basically is responsible for the school’s administration and a Head Teacher who takes care of the teachers, develop curriculum and plan the lessons/activities for the year.
We get funding from school fees, fundraising activities which we try to organize from time to time and also donations from public and corporate sector.
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Personally, what have you gained through the journey of formation of this project?
I learned to be patience. I have also learned to be more humble and compassionate. I have also learned a lot from other parents, who has various backgrounds to support and give sound advice whenever we face difficulties along the journey.
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Further down the line, what do you anticipate from this project? (Facilities, student/teacher numbers, programs etc.)
Of course, down the line I would foresee a need for a better facility to house the school. With better facilities, the teachers can plan more interesting lesson plan and we can also make use the facility for various activities, ranging from extending the services to cater bigger student enrolment, venue for vocational training, meeting place for parents, provide other services such as physiotherapy or speech therapy sessions, and lots more!
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Upon completion of the classes in P7, are there any other following plans for the students?
We have lots of plans (or dreams) for the students. One of the example is to have Project 13 as described above. However, we need more volunteers to push this agenda through and support from the public.
10. Your son attends the class, has it affected him in anyway?
Arif attends Orkids twice a week, apart from going to Sekolah Kebangsaan Taman Maluri (aliran khas) and an Islamic kindergarten. Each of the avenues provides him with different set of skills (academic and living skills). In ORKIDS, he is guided by the teachers to hone his academic skills and the teachers are doing a fantastic job by coaching him and developing him at his own pace. In Sekolah Kebangsaan, he is exposed to a different environment with non-DS and normal kids in the same compound, which will enhance his social and living skills. While we expose him to Islamic kindergarten to let him pick-up his religion lessons as much as possible.
Slowly but surely, I am confident that he will be able to function well to the best of his ability.
11. What advice would you give to others who aspire to build a project like yours?
Go for it! And enjoy the journey!
12. Over the years, is the public more informed&educated about Down Syndrome? Are they being open minded towards these kids?
Yes, I believe so. But there is so much to be improved in order for us to better the living conditions of Down syndrome individuals. The government and its agencies has to be enablers, not stumbling blocks. The same goes for the public, we cannot bury our heads in the sand, pretending that everything is OK for our disabled community.
13. Based on your observation, what are the main needs of a Down Syndrome child?
A Down syndrome child needs a strong support from his or her parents first, then their close family and friends. Then only community and government.
The parents need to settle any of the medical conditions (as much as possible) before even starting any lessons.
Then only the child can concentrate better without any medical issues to hinder his or her development.
14. How would you explain Down Syndrome to the people who don’t have any knowledge on this subject?
Down syndrome is not a disease. It is just a genetic disorder which causes them to have a certain physical features such as flatter face and upward slanting eyes, and having trouble learning and slower to be able to talk and take care of themselves. The perception of Down syndrome individuals are retarded is wrong.
15. Till this day there are still parents with their first Down Syndrome child, feeling completely lost and unsure of what to do or how to appropriately raise them. What is your take on this matter?
Nowadays, almost all hospitals have counselors for the parents to talk to when they get to know their child has Down Syndrome. They can also go to established organizations such as Persatuan Sindrom Down Malaysia (PSDM) or Kiwanis Down Syndrome Foundation-National Centre for help. In ORKIDS, we can also help out.
What is more important is that the parents have to quickly get proper advice and plan for their children’s development, either medical, self-help skills or academic. Being in denial is not going to help the child.
16. What impact have your son given to you and your family’s life?
On the hindsight, having Arif Uthmani is a gift for me and my family. He made us realize how precious life is and to enjoy every single second. Every simple achievement is celebrated and appreciated. Of course, there are challenges along the way, but these challenges make us stronger as a family.
17. Are there any future plans you have for your son?
We pray for his health and success in the future. Only time will tell where his journey will bring him; but we will be there to guide and celebrate together as a family.
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More information on ORKIDS, please go to: https://www.facebook.com/Orkids.P7
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