There is a reason why I keep most of my blogs sounding strictly factual, focusing mostly on the goings-on of life. I hate being personal. It’s a rare occurence for me to blog about things that exposes my emotional well-being. I hate doing that. What I feel is none of anyone’s business but myself.

This isn’t to say that I don’t have the need to vent my feelings. I have plenty to write on that subject. But suffice to say, they are just too raw for me to share with anyone.

However, dealing with the diagnosis of Down syndrome has changed almost my entire outlook on life, more than I care to admit, and all in a matter of mere weeks. Things that I worried about or wished I had, now seem very petty. Even my professional focus in life is being shaken. “Ignorance” now has a whole new meaning to me.

So I need to vent this. Just once.

Like all other mothers with special needs children, I can’t help but ask, “why me?” Granted, each day gets easier for me, they really do. But there are moments when my anger and despair would seep through and I would get angry at myself, at God, and at everyone else around me, as if I’m facing this all alone. But I know this is actually just self-pity, and I’d just as quickly slap myself mentally out of it and continue on with life.

One thing I always thank God for is the Internet. I get so many uplifting and enlightening information from all the sites and resources out there to help me understand Down syndrome better. Reading the scriptures that were pointed out in God, Do You Care? gave me hope that Edry is meant for bigger things in life than I would ever fathom. Being a part of the DS community in the BabyCenter Forums has educated me about the real issues that parents with DS have and need to deal with daily.

But the earliest source that tugged at my heart was a short fictional story written by Erma Bombeck called God Chooses A Mom For A Disabled Child. It was as if I was being punched in the gut. Happy… impatient… feeling of self… independent… selfish. Those are words that describe me.

You see, after I had Ezra, I thought that that’s the end of it. Three kids are enough. Just as I have planned. And I was happy. I was working and well-paid, my children and my husband and I were healthier than ever, and we had almost everything we ever wanted. Just as I have planned.

And then Edry arrived. And my life turned upside down. Everything changed. Yet… everything is the same. It’s so hard to describe it.

Further down Bombeck’s story was even more self-revealing for me:

… “Yes, there is a woman I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word.’ She will never consider a ‘step’ ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

“I will permit her to see clearly the things I see — ignorance, cruelty, prejudice — and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

Those words spoke directly to me. As much as I hate to admit it, those are the exact kind of things I wish to experience in my life. And I’ll take it whichever way I can.

Thank you, God, for blessing me with Edry.

And thank you, Edry, for giving my life meaning.

So now that I’m done telling you my sappy story, I assure you that you won’t be reading anything like this ever again. Ever!

2 August, 2010 in Exclusively Edry, Life in General, MaPa & In-Between by Mommy (Lorna) Add A Comment
Tags: down syndrome, feelings, Human Interest, Literature, meaning, special needs children

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!

14 July, 2010 in Exclusively Edry, Life in General, MaPa & In-Between, Raising Kids by Mommy (Lorna) 5 Comments
Tags: CBR, Child development, cognitive skills, community based rehabilitation, Day care, down syndrome, gross motor skills, infant stimulation, isp, kdsf, KDSF centre, Kiwanis, Kiwanis Down Syndrome Foundation, kota kinabalu, Motor skill, sabah, speech therapy, Therapy

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.

9 July, 2010 in Exclusively Edry, Life in General, Raising Kids by Mommy (Lorna) Add A Comment
Tags: assessment, AVCD, baby, congenital, down syndrome, early intervention program, early intervention programs, EIPs, Hypotonia, low muscle tone, Non-profit organization, occupational therapist, occupational therapy, paediatrician, physiotherapist, playgroup, Rehabilitation medicine, seri mengasih, Seri Mengasih Centre, Therapy, understanding

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.

7 July, 2010 in Family Life, Life in General, Raising Kids by Mommy (Lorna) Add A Comment
Tags: down syndrome, kota kinabalu, Learning, learning disabilities, sabah, understanding

I was quite ecstatic to find out that Eric will soon be learning the Arabic language in school. I don’t know Arabic, but I know how to read and write in Jawi, hopefully that’s a jump start for me to help Eric with his studies. It’s always good to be able to learn a new language; many of my friends who can speak Arab are earning money like crazy. We shouldn’t underestimate our children’s intellect and the ability to learn especially when they’re young.

Which brings me to the topic about teaching Science and Math subjects in English in Malaysian schools. I’m not so clear about the current stance by the government, but it sure will be a sad day if and when the government decides change its policy to not teach them in English anymore. I don’t understand the hullabaloo that’s going on about this. The excuses I hear from people that wants English as a medium be stopped are irrational at the least.

The most popular and laughable excuse is that teaching Science and Math in English is not nationalistic. Is talking in Malay the only way we maintain our nationalist spirit? Does that mean we can’t use Chinese, or Indian or Kadazan language to learn these subjects, for fear that we are not nationalistic? It doesn’t make sense. Talking in English doesn’t make one any less of a Malaysian. People who use this excuse doesn’t understand the word nationalistic. Being less nationalistic is when someone uses the national anthem Negaraku to humiliate people of our country.

And then there’s this talk among “intelects” and “psychologists” that analyzes trends of the primary schools, saying that more students are being expeled because of the increasing failure rate of students as a result of the English medium in Science and Math. So… the decision to expel a kid is made by the English language, not the school itself. I see. Idiots. If the school notices a high failure rate, why not remedy it by giving extra tutorials and talking to the parents on how they can improve the child’s education? Believe it or not, I heard that many schools prefer expulsion because they didn’t want their passing % in the national school exams decrease. Shame on those schools.

Of course, there are those rural folks. Because they’re so rural, they don’t speak English well enough and therefore chances of failure are high. Understandable. This requires the creativity on the school’s side by making English learning more fun. Music always works. I’ve seen a few fellow friends of mine who’ve managed to combine English and Math for effective learning, and my engineer cousin-turned-teacher who did it for his Science subject. We have to prepare rural children to use English. We also talked about how the Internet could bridge the gap for rural community to learn more and faster about the world around us. However, without exposure to English, it will all be in futile.

I want teaching Math and Science in English to continue. Importantly, keep teaching the teachers so that they can improve on their language skills, or even better, draw more talented educators. Give this policy more time. 6 years is not enough. The more exposure, the better.

Teachers and parents, take note.

5 January, 2009 in Life in General by Mommy (Lorna) 1 Comment