I went shopping with Edry yesterday. Maybe it’s how small Edry looks, but a few people saw him and said, “Kesian,” which is Malay for the word pity. Is this a habit for some people when they see a small baby? I understand if they say, “Aw, how cute,” which I am SO sure is developed out of habit. I know that because I used to not do that at all when I see small babies. I didn’t even care about babies and small kids until I become a mom.

Anyway…

I hope people won’t pity me for having a child who has Down. Nor do I want people to pity Edry for having Down. I just want people to understand that we need support like any typical moms and kids do. I want people to understand that Edry might need to be educated the way other children who have a hard time learning do. We need empathy, not sympathy.

Because if you could just give us the chance, if you could just be patient with us, Edry and differently-abled children can grow up to become happy and fulfilled. They are educationally-driven, run their own businesses, and can even drive around doing their own errands. They can even bust criminals.

So, you know… I’m OK. He’s OK. Life’s OK.

Don’t say you pity us. Just understand us. And give us a smile. That’s always a great way to make our day.

16 August, 2010 in Exclusively Edry, Life in General by Mommy (Lorna) 2 Comments
Tags: down syndrome

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

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.

1 August, 2010 in Exclusively Edry by Mommy (Lorna) Add A Comment
Tags: CBR, CBR centre, community based rehabilitation, Community-Based Rehabilitation Centre, down syndrome, early intervention program, EIP, Hypotonia, infant stimulation, isp, kota kinabalu, pdk, pemulihan dalam komuniti, potty training

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.

25 July, 2010 in Exclusively Edry, Raising Kids by Mommy (Lorna) Add A Comment
Tags: baby, down syndrome, exercise, Human Interest, hypersensitivity, infant stimulation, isp, kdsf, Massage, massaging techniques, Motor skill, Musculoskeletal Disorders, Pelvic, protusion, Strengthening, tactile defensiveness

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