ALL non-profit organisation need advocates. And every one of them could do with an advocate like Irene.

From the first day she and her son, Zi Ren, joined us at the practice session for participants of our inaugural Junior Leaders Programme, Irene’s been passing on the word to friends about the many ways Care2Run helps differently-abled young people. And she tells us she does it because parents of differently-abled children may not always know about all the programmes available for their kids.

Zi Ren too, forever with a large smile on his face, has done his part in raising awareness about Care2Run. In fact, one of the first things he did was to appear as the “face of Care2Run” in a poster promoting our collaboration with Yayasan Bursa last year for the 2018 Bursa Bull Charge. Since then, the young man has featured in more promos for us, while at the same time, growing in terms of physical development with the guidance of Care2Run’s mentors and coaches.

Here’s Irene to tell us more …

Hi Irene. We’ve wanted to chat with you for a long time. Can you tell us how you got involved with Care2Run?
Hi. Actually, Teacher Jessica from Kiwanis Down Syndrome Foundation (KDSF) was the one who told me about Care2Run. Care2Run was holding a session at KDSF-National Centre and she invited Zi Ren and me to come. After she invited me, I went on and invited Ne Fong’s mum and Khong Way’s mother to join as well. Later on, I told Rosalind ( May Yoong’s mother), Sheryll (Brian’s mother), Wai Kuan (Yen Yen’s mother) and others about the programmes. You know, after Zi Ren left school, I decided to set up a WhatsApp group for the parents I’d met. One of the reasons was because I felt that not everyone had access to information about how to handle problems that arise at the different developmental stages for differently-abled young persons, like for example with regard to independent living skills, social and physical developmental needs, vocational training or employment opportunities. I thought the WhatsApp group was a good way for all of us to share our knowledge. Now, those parents have introduced other parents, and it’s become a large group. I don’t think I know every one of them.

Can you share with us a little about Zi Ren’s developmental journey?
I registered Zi Ren in KDSF quite soon after he was born but he only joined them when he was about a year old, and he was there until age six. Following that, I enrolled him in Wisma Harapan at Jinjang North and only registered him at a government primary school two years later at age nine. Zi Ren eventually finished secondary school at age 19. At the moment, he works three days a week at a trading firm’s store, which is run by one of my friends. He does packaging and general work. Once a week, he volunteers half a day at charity organisation Tzu Chi’s cafeteria washing utensils and stacking sales products on the shelves.

Zi Ren seems to enjoy interacting with people. What else does he enjoy?
Oh, he really loves dancing. He may not be as good as his friend Ne Fong in terms of getting the rhythm, but he can do it and he does enjoy it. He enjoys the physical activities at Care2Run too.

That’s awesome. Was Zi Ren involved in things like sports and running before joining us at Care2Run?
Not really. He took part in some games when he was at school. But to be honest, even then his chances were limited. You know, in many schools, teachers tend to give opportunities in areas like sports and dance to kids who are slow learners rather than to kids with Down Syndrome or Autism. Despite the fact that I had told the teachers during his first year in secondary school that Zi Ren had had the experience of having danced and performed in front of many people with Persatuan Sistem Down Malaysia, he was still not given a single chance to dance during his five years there.

Did Zi Ren feel frustrated due to the lack of opportunities?
No, he doesn’t get frustrated about things like that. I was the one who was frustrated because I knew what he was capable of and he was simply not getting the opportunities. In 2015, about seven months after Zi Ren finished secondary school, he was involved in a two hour-plus sign language musical performance with Tzu Chi. It took place in Bukit Jalil with 3,000-plus Tzu Chi members participating. The stadium was filled with people from Malaysia as well as from overseas. The songs required a lot of coordination and many steps, but Zi Ren could remember all the steps and his parts. That proved to me that if kids like him are given the chance, they can shine.

How would you say Zi Ren has grown after finishing school?
My son has problems communicating and with concentration. But he has improved tremendously over the years. At Tzu Chi, for example, they encourage him to speak out more and he has learnt to do that, even though it is not always easy to understand what he is saying. He’s also learnt to be braver and more vocal. In terms of Care2Run, I would say that it has nurtured an interest in physical activity in him. You know, kids with Down Syndrome really need to stay physically active and I think that he has improved in that aspect since coming to Care2Run. Funnily enough, he only seems to like running things like that when he’s at Care2Run. When I take him to FRIM or someplace like that, he always complains. I guess it’s because the encouragement he gets from me while jogging or running is not the same as the encouragement he gets from everyone at Care2Run.

In your opinion, how do you feel Care2Run helps differently-abled young people like Zi Ren?
Children with Down Syndrome have a tendency to develop hypertension and diabetes. And many of them like food that is not necessarily healthy. That, together with a lack of exercise, increases the risk of them becoming obese and developing diseases. So I feel that what’s good about Care2Run is that it addresses this need in kids with DS. Besides that, there is the one-on-one mentoring attention, which is sometimes lacking in other organisations. But to me, perhaps the most important aspect of Care2Run, is that everyone involved seems to genuinely care. This is important because no matter how good a programme or system is, if the people involved do not have empathy, then it is pointless.

Having been with us for almost a year now, what are your aspirations for Care2Run?
I feel the concept of Care2Run is very good. But of course, like with other non-profit organisations, a lack of finances and human resources can be challenging. Without the money and the staff, it’s hard to train and develop a system that ensures it will last for a long time. We will all get old and tired, and we need people to carry on the good work. But how do we do that without the finances and people? These are real challenges. And I hope Care2Run manages to overcome them.