1st visit to Kiwanis Down Syndrome Foundation (KDSF) Kota Kinabalu

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Yesterday, after sending Ezra to daycare, I figured I drop by the KDSF centre in Taman Milek 2, Jalan Lintas, Luyang, to continue my quest for more information on Down syndrome centres in Kota Kinabalu. It was fairly easy to find the place (well, easy since I already found the place via Google Map), and the sign board is large enough that you won’t fail to notice it.

The little ones were enjoying their tea break when I arrived at KDSF’s doorstep, so I had the pleasure of seeing those independent souls enjoying their food while Ms. Raneh, the centre administrator, answered my questions. Here’s what I basically found out about the centre:

  • The centre is one of only two places where Infant Stimulation Programme (ISP) is conducted. The other place is the state-run Community-Based Rehabilitation (CBR) center in Likas. KDSF conducts the ISP every Friday, from 9am-10am. Both child and parent/guardian must attend together. The way their ISP works is that you attend a weekly session for about a month or two, where they will teach you the right techniques to stimulate the physical development of your baby. Once you get the hang of it, the sessions will go down to about once or twice a month where they will help monitor your child’s progress. The CBR centre also works in a similar way to KDSF when it comes to ISP.
  • Some parents opt to go for ISPs offered by both KDSF and CBR because the programmes are offered on separate days. I may consider doing so, because 1) I’d like to learn the similarities/differences between those programmes, and 2) I may not be able to attend the ISP at KDSF in due to a meeting, or on medical leave or any other reason. Therefore, getting myself familiar with both programmes may be beneficial for me. I just hope I’m not stretching myself too thin.
  • Focus of ISP in KDSF for an infant’s first few months are on gross motor skills. Cognitive skills will come in the later months, even speech therapy. Hm. This would mean that I will have to make some DIY for oral stimulation, which hopefully can jumpstart his speech development and train him for solid feeding later.
  • KDSF offers daycare service for children between 2 to 7 years old. I think. I didn’t actually clarify this with Raneh. But for sure, they do not have any facility for infant care. I’m not worried about this anymore, though, because this morning I met with Sister Bernadine of Stella Maris Preschool (Taska Stella Maris) confirmed to me that I can send Edry to their place just as I have planned, yes!
  • What else, hm? Ah, yes, payment! I did specifically ask for the payment structure, but Raneh didn’t mention anything about it. She did tell me about the Welfare Dept allowance that Edry is eligible for, and she specifically said that it’s “for Edry’s use”, not mine. Okaayyy…? I wished she could just be straight forward and request that the money be used to pay (or “donate”) for the centre’s services instead of being cryptic about it. I mean, even if there’s no allowance, RM150 out of my own pocket money is reasonable if what I get in return is the ability for Edry to grow up at his most optimum. These organisations shouldn’t be afraid to charge the public if they require so to continue providing their services.

I believe that’s the gist of it. Edry and I will go to our first ISP session this Friday, and I hope his daddy will tag along. Hopefully I can dig up some more details, particularly on the payment!

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Learning about Down syndrome and disabilities

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Notice that I now have a new page called Down Syndrome in Sabah? Now that I have Edry, I have developed a passion to know more about Down syndrome and other forms of learning disabilities, to see what I need to and can do in order to prepare Edry for the best in his life. It’s not meant to be an extensive list, though I hope it is useful enough for other mothers in Kota Kinabalu who are new to this experience a place for them to start off their understanding of Down syndrome.

I initially wanted to create a new blog specifically for this research, because I didn’t want this blog to end up just being about Down syndrome. However, I thought that most of the entries I may end up blogging about would be as emotional as well as factual, and the tagline for this blog is “journeys of life…” so I decided to scrape the idea of making a new blog. It’s also a good thing, because having too many blogs would just be too much for my brain cells to keep up with.

I still have a lot of digging to do, in terms of the types of therapy necessary for Edry. I’ll tackle them one at a time, and hopefully have enough time and energy to blog them as they come.

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