1st session at the Community-Based Rehabilitation (CBR) Centre Kota Kinabalu

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So much to blog, so little time. Hey, when you have a newborn to care for, housework to do, and sleep to catch up on, menial stuff like blogging have to go on the back burner.

I visited the Community-Based Rehabilitation Centre (CBR; known in Malay as Pusat Pemulihan Dalam Komuniti or PDK) in Likas finally, last Monday. I was driven specifically by a text message sent to my better half by his colleague’s friend’s friend, who happened to gave birth to her child 2 months ago and was diagnosed with Down syndrome.

I followed up with Edry’s first early intervention program (EIP) session on Wednesday with the caretakers there, and I also met students from UMS who, if I remembered correctly what was been told, were doing their practicals. The children participating in the session consisted of older kids diagnosed with autism, who I assumed are around the ages of 3 and above, so it clearly seemed that the session wasn’t actually geared specifically towards infant stimulation program (ISP).

A few minutes into the session, though, Edry and I were taken to a separate room where one of the teachers, Rindah, did Edry’s evaluation. She was quite satisfied with Edry’s condition, particularly because his hypotonia wasn’t as serious as she expected. Edry wasn’t floppy and had satisfactory neck control. He even surprised me when he held up his head for a few seconds longer than I had thought he’d be able to do.

I was advised to go for EIP at the CBR centre at least twice a month, which means that it’ll be a total of three therapies a month including the one session a month at KDSF. Before I left, Rindah gave me three things to do as a bit of homework that I can use with Edry while we’re at home. The first one is the method of pulling Edry up in a sideway motion that would stretch his neck muscles for strengthening. Ah, it’s a bit difficult to explain it, but I can tell you that the technique disarmed me a bit (a little pun there, if only I could show you the technique), maybe if I have the time, I’ll show you a clip of it. The second homework is to spend more time holding Edry in an upright and open position, rather than the usual cradle position. The open position involves propping him in any way possible as long as he’s facing away from your body. This technique is suppose to help expose Edry to more stimuli. The third homework is — get this — potty training! Oh-am-gee! I know! At six weeks?!, I exclaimed. Rindah’s advice is that if I can determined the approximate period of time when Edry passes motion, then it would be the best time to take him off his diaper and prop him on a small potty. At those times, it would help to also make some sound effects to help him pee (by doing the hushing sound) or pass motion (by grunting).

Wow, I don’t know about the third one, but I’ll try as soon as I can find a small potty that’s just the right size for Edry.

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Infant stimulation techniques: 4 weeks old

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Our ISP session at KDSF KK two Fridays ago was brief, but it was worth it in my opinion, mainly because I have learned a few techniques I can easily do at home which would help exercise Edry’s motor skills. I decided to create a short clip showing these techniques, realizing how difficult it is to find therapies online that specifically focuses on children with DS and a detailed explanation on how to go about doing them.

Refer to the video above, which contains annotations describing each of the following exercises in detail:

  1. 0:08 Addressing tongue protusion
  2. 0:48 Strengthening of the jaw
  3. 1:45 Pelvic and leg joint toning
  4. 2:20 Shoulder and arm toning #1
  5. 2:40 Shoulder and arm toning #2

One technique I didn’t manage to capture in the video was the neck massaging technique. The way to do that is to rub the back of his neck, from the base of the head to the base of the neck in a downward motion, and repeat 5 times.

Eric did a great job recording them with our simple digicam; you’ll see the cameraman making a brief appearance. Little Ezra helped, too, by adding some “background sounds” on top of the sound of Playhouse Disney channel already playing on TV — that is, if he wasn’t climbing and pushing me while I was in action.

I hope the video helps to show not only the massaging techniques, but also the realistic environment or condition in which your baby is in. He ain’t gonna like it, and you’ll get all sorts of reaction from your little one, from the constant movements like what you see in the video, to crying and resisting which was what happened when I first did it on Edry. The therapist mentioned that such resistance is normal in an infant due to their tactile-defensiveness, but will subside with frequent stimulation to lessen their hypersensitivity.

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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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