Down Syndrome in Sabah

Click here to read my blog posts and experience on Down syndrome.

I created this page specifically for myself, as a centralized place for me to refer to all things Down Syndrome. There are so many resources out there on Down Syndrome, which I am grateful, but I needed a more focused references for where I live, which is in Kota Kinabalu, in the state of Sabah, Malaysia. Some of the resources and organisations may also be applicable for other forms of disabilities and special needs, not just Down syndrome.

One important note if you’re looking for help and assistance — be proactive! Start getting help as early as possible. Don’t wait for the doctor or welfare department to come to you — it is you who have to do all the work. If you have just given birth, get all the help you can from your family members or friends who are willing to help, but do it as soon as you can, preferably the same week as your birth.

The list below will grow, and I will continuously update this page as I learn more information about Down Syndrome. Feel free to bookmark this page for your reference, too. If you plan to use the information in this site, please take note of my disclaimer.

Centres I currently go to

  1. Community-Based Rehabilitation (CBR) Centre / Pusat Pemulihan Dalam Komuniti (PDK) (C13, Taman Likas Jaya, Lorong Burung Kenari 1, Likas) Phone: 088-255200:
    They operate from Monday to Thursday. Their Early Intervention Programme (EIP) is every Wednesday, between 9am and 10am, for an hour or so. Other than therapy, you can do you child’s Kad OKU here. Click on the address to view the map, or click here to view my posts on CBR Likas. If you’ve heard of a CBR in Tanjung Aru, this is the same center, but they have just moved to Likas in early 2009.
  2. PSDKK Learning Centre (No. 31, Lorong Orkid 2, Taman Orkid, Jalan Penampang, 88200 Kota Kinabalu) Phone 088-219809:
    I attend their Infant Stimulation Programme on Friday, between 9am and 10am. Click here to view my posts on KDSF KK. It offers daycare services for children ages 2 to 7 years old. Its EIP includes ISP, as well as Toddler Programme (TOD) and Special Education Programme (SEP). This centre accepts volunteers if you are interested in becoming one. You can ask Aunty J of her experience working as a volunteer in the centre.
  3. Taska Stella Maris (Jalan Kampung Tanjung Aru, Tanjung Aru) Phone: 088-241782:
    They offer daycare service for a limited number of special needs children. Edry goes there when I work. I love this place and the environment. The infant care area particularly are very clean and spacious. Thanks to Sister Bernadine and all the minders there, they are wonderful! My kids love them!

Other Down Syndrome Centres & GovernmentAgencies in Kota Kinabalu

  1. Social Welfare Department / Jabatan Kebajikan Masyarakat (Wisma Kebajikan, Lorong Gerunggung B, Sembulan): This is probably the first stop you should make once your doctor confirms your child’s diagnosis. You don’t need to wait for the blood test or anything — a doctor’s report will do. The Department will issue your child with a Kad OKU (Kad Orang Kurang Upaya), which allows you to obtain privileges given by the government and certain private sectors to ease your financial burden and give you extra resources to help with your child’s growth, education and development. Apply for the OKU Card early because it takes ages for it to be completed in Sabah!
  2. Public Welfare Services Department / Jabatan Perkhidmatan Kebajikan Am (Wisma Kebajikan, Sembulan): This State Government department runs hand-in-hand with the Federal Social Welfare Department. They can also help you with the registration of Kad OKU.
  3. Seri Mengasih Centre (PWD 75, Jalan Selangor, Tanjung Aru) Phone: 088-223221: This was one of the first places my pediatrician recommended to get more assistance on Down Syndrome training and resources. When CBR centre was located there, Seri Mengasih used to offer ISP and EIP for younger children, but they have stopped since CBR centre has moved to Likas in 2009. EIP is conducted for older children ages 6 and above. Vocational training is provided once students reach adulthood. Indeed, many of those who joined this centre have ended up with jobs or have become pretty self-sufficient. Click here to view my posts on Seri Mengasih Centre.
  4. CitaCita Learning Centre (No. 31, Lorong Austral 11, Taman Austral, Kota Kinabalu): Run by Persatuan CHILD, its programme looks to be almost as extensive as Seri Mengasih. Again, no real mention of daycare service, so I’ll need to call them as well.
  5. Taska Tuna Sari (No. 7-8, Lorong Pokok Palma, Dah Yeh Villa, Damai): My sister told me that this is one of the few daycare centres in Kota Kinabalu that cater to special needs children. I need to confirm this, perhaps with a phone call to that centre or to the Daycare Association. Looks like it’s located between Damai Specialist Centre and Tshung Tsin Secondary School. I found a blog post that talks about this place, though it doesn’t mention anything about special needs children.

Support Groups & NGOs in Kota Kinabalu and Online

  1. Down Syndrome Association Kota Kinabalu: DSAKK has just been formally registered on May 2011, and while we’re still babies, we have many passionate members who are eager to provide support and advice. I maintain the blog, but lately am unable to update it due to my health issues. Don’t let the sparse blog entries deceive you — they hold monthly meetings and come up with activities every four months or so. Contact us via e-mail if you need more info.

Reading and resources online

  1. Coming soon

Inspiration

These are mostly stories and web sites of those experienced with or has Down syndrome. One of these days, I want Edry’s to be a success story, just like Suj.

  1. Sujeet Desai, world-famous musician and traveller, and happens to have Down syndrome.
  2. Karen Gaffney, degree-holder and advocate, runs a non-profit organization, and has Down syndrome herself.
  3. The Specials, a group of five lively young people living independently in Brighton, England. If you ever wonder how your child could grow up to be in a typical life, wonder no more.

Would you like to get in touch with me? Use the contact form below. I’ll try to get back to you as soon as possible.

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