(song “Total Eclipse of the Heart” playing in the car stereo)
Mommy: (singing) … nothing I can do, a total eclipse of the heart…
Eric: Wow, this song is good.
Mommy: Yeah.
Eric: I like this song.
Mommy: (driving)
Eric: I know the total eclipse of the sun, and the total eclipse of the moon. I know two eclipses.
Mommy: ???
—

When did I started teaching signing to Ezra? Oh, yeah, that was in late May, wasn’t it? Since Joel is still with his ah-po and ah-kung in Sandakan, I’ve been signing with just Ezra.

I’ve been pretty consistent with the following signs: more, milk, drink, eat, finish/no more, enough/that’s all and bathe/bath. I’ve been doing it every day with Ezra, but I thought Ezra would never get it. Until a few days ago, that is. Last Friday, he did the eat sign, which made me jump up and rush to get him something to munch on, just to show him that I understood what he wanted. And then last night, after finishing off a pack of crackers, he signed to me that he wanted more! Exciting! He also has less meltdowns lately. I think he finally understands that he can use all those gestures I’ve been showing him, and that it works both ways. I also find that he’s talking more as well. Speech is definitely improving. I’m able to understand him more now. Phew!

The only thing I regretted not doing when he did signs was that I didn’t get excited enough. Showing excitement does encourage him to do things more. What can I say — I was too shocked when I saw it! I couldn’t react on anything but respond to what he wanted. I’ll make sure to give him more compliments the next time I see another baby sign.

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!

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.

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.