Infant stimulation techniques: 4 weeks old

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

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!

See you in September

My parents-in-law were kind enough to help out during my first few weeks after giving birth, by babysitting Joel and Ezra for a couple of weeks. To help us adjust to our newest addition, they offered to care for Joel for another couple of months. The catch? Joel will have to follow them to Sandakan for the whole duration. That’s hundreds of miles away!

P1030400 It wasn’t easy for me to decide, but it wasn’t so hard, either. It reminded me of my economics class, specifically on opportunity cost, i.e. the cost of sacrificing one need in order to satisfy another need (or at least that’s what I remember it loosely defined as). I know that I will miss Joel like crazy as in weeping daily thinking about adorable little jovial him. I also realize, though, that I needed the time and energy to recuperate from all those physical, emotional and mental roller coaster after delivery. I would also save on daycare expenses while he’s on vacation, which is good in a way 🙂

Gratefully, yet heavy-heartedly, I agreed, while mentioning to my in laws that I am going to miss Joel dearly until he returns. They understood. The last I heard from Joel, he was jumping up and down at his uncle Jason’s house en route to Sandakan. Didn’t bother him one bit that he wasn’t at home with mommy and daddy. I’m OK with it.

Joel and his ah-kung (grandpa) and ah-po (grandma) will come back around September, just in time for the Aidilfitri (Eid) holidays. I can’t wait to see him again.

See you soon, dearest Joel! Mommy and Daddy and Eric miss you!

Healthy baby and more DS understanding

Edry had his follow-up check with our paediatrician (PD) this morning, and he passed with flying colours! The doc noted that his jaundice is looking better, which means that Edry’s liver functions are getting better (yay!). His lungs, heart and everything else checks OK too. I only need to put some lotion on him since his skin is a little dry. Dang that phototherapy lights! He also reconfirmed with me that Edry doesn’t have any congenital issues (health problems present at birth). I asked him about the possibility of Edry getting atrioventricular canal defect (AVCD), a common problem among Down syndrome children, and he said if it’s not congenitally detected, then he won’t have it even when he grows up. What a relief! PD mentions that I only need to be on the lookout for ear infection due to his low muscle tone.

The doc and I went on to talk about other things, specifically the early intervention programs (EIPs). He handed me a leaflet of Seri Mengasih Centre, so I thought I’d share it here.

Early Intervention Program

For babies, toddlers and young children from 0-12 years old with:

  • Cerebral Palsy
  • Intellectual Disability
  • Motor Coordination and Sensory Impairments

Day: Every Wednesday
Time: 2:30pm for assessment, 3:30pm for playgroup

Program follows a multi-disciplinary approach involving:

  • Physiotherapy
  • Occupational Therapy
  • Sensory Integration
  • Counseling / Assessment

Conducted by:

  • May Vivien Lim, Physiotherapist, B.Sc. (Physiotherapy), Australia
  • Jasminah Ali Umer Kutty, B.Sc. (Physiotherapy), Australia
  • Florence Lajangang, Occupational Therapist, B.Sc. (Occupational Therapy), United Kingdom

Fee structure:

  • Annual membership fee payable to Seri Mengasih Centre (including free access to the Resource Library): RM50
  • Payable to the therapists:-
  • Preliminary Assessment (45 mins, one-off): RM50
  • 3-sessions per month (1 session is 45 mins with all therapists): RM75
  • Extra one-to-one therapist session: RM50

This is a really good start for me. I got tons of information and more understanding of the types of services and therapy I can get from non-profit organisations as well as government centres. I think I’ll just do a different post for that later. For now, I’m taking a little time to be grateful to the Lord concerning Edry’s health check.

Learning about Down syndrome and disabilities

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.

Welcome to our world, Edry!

Eric and Edry Edry has been safely delivered two minutes shy of midnight on 19 June.

I know that all my babies are special. But Edry is by far the most unexpected surprise for me. Everything about him is a surprise. Starting with the unexpected news that I was almost 10 weeks pregnant with him when I found out. I didn’t plan on having anymore children, but God gave me another. I suppose He thinks I can handle another 🙂

Next comes the unexpected labour. Edry was suppose to be due in 23 more days, but he had other ideas.

And then, the biggest surprise of all. Edry has Down syndrome.

I didn’t know how to handle the news at first. I was told about his condition by my OB-GYN 20 minutes after giving birth. My reaction was, “It’s OK, he’s still my son.”

I went to my room to rest, and waited until my mom, sister, and sons left the room, leaving only my husband and I. I told him about Edry. After that, I didn’t want to think about the issue, I was getting my tubal ligation in 8 hours’ time. I needed to rest.

When I recovered from my anesthetics the next evening, the pediatrician has told my husband everything. Edry’s condition still hasn’t sunk in. So I started reading a little about Down syndrome. And my eyes got watery. 50 percent chance of heart and gut complications while he’s growing up. Brain complications, hearing problems, breathing issues. The pediatrician echoed all those things I’ve read on the Web that next morning. I was terrified. How am I going to raise him with all these health issues?? I was terrified for him, for my boys, for my husband. I suddenly felt inadequate. I don’t deserve to be Edry’s mom. I’m not strong enough.

It has been 15 days since we first welcome Edry into our world. I accept him for who he is, I think I always have since the second he existed within me. But I’m still learning. So many things left unknown. He’s currently a healthy baby. I pray to God he continues to be healthy.

In the mean time, this blog will not only be the voice of my kids, but also of me, and my journey with four very special boys and the most supporting and loving husband one could ever hope for.

Clearly, our lives have transformed. The Blog of Rugrats is on a new chapter. Join the ride, will you?