There were so many things happening between the nine and 12 weeks period, that I didn’t know what to blog about first! So let me start with this video, taken by Eric (who decided to make an appearance a couple of time).

I added a few annotations corresponding to the infant stimulation techniques I’ve been using since my last visit to Kiwanis Down Syndrome Foundation (KDSF):

1. 0:10 – An open seating position, where Edry is leaning on me while I support his legs, can help with visual stimulation and be more aware of his surrounding. (Note: my hand position isn’t that accurate, maybe I’ll be showing a better way of holding Edry in my next shoot). This is a good position, because it supports his back, and you have more control of his legs and keep them closer together. This position is better than having Edry carried facing me, because not only would they tend to be more huggy-clingy towards you when they grow up, but your baby’s legs tend to be placed wide apart. Not good for kids with hypotonia, particularly when they reach the learning stages of walking.
2. 0:40 – This is actually the back neck massage that I blogged about before this. This helps with strengthening the neck so he can lift his head (which he now can, BTW). I’ve been doing this since Edry was 4 weeks old. This massage also helps, somewhat, in preventing the small hump that might show behind his neck, a physical feature typical in kids with Ds. There’s suppose to be a name for that, but I forgot. My therapist mentioned that I should look out for that, just in case.
3. 1:05 – Another neck massage, this time to help Edry prepare for his swallowing once he’s ready for solids. It’s best to stimulate them early.

More progress report in my next post.

Argh! I thought I had this settled already, but apparently of the 4 sets of application forms required for me to submit, they only needed ONE copy, and returned the rest to me. That ONE copy is to be sent to the Kuala Lumpur office for them to process the OKU Kad. I have to send the rest of the forms myself to the rest of the places like the Welfare Department (yes, the Welfare Department where I applied for Kad OKU is *different* from the other Welfare Department of… sheesh, whatever) and the Education Department.

So here’s my understanding on how the application procedure works here:

1. I fill in the form in 4 copies (with the doctor’s report written in), and include relevant supporting documents such as his birth certificate and parents MyKad copies.
2. I send the whole 4 copies to the *Federal* Welfare Department, 1st Floor, Block B, Wisma MUIS, Kota Kinabalu for their verification.
3. They take one copy of the form for processing to obtain Edry’s Kad OKU, and return the rest of the copies back to me.
4. I go over to the *State* Welfare Department, Jalan Kebajikan (the map can be found in my Down Syndrome in Sabah page), and give them one copy of the form for their record.
5. I go over to the Education Department, Wisma Bandaraya, and give them the other copy of the form for their record. The department uses it for placement later in the special eds school/kindergarten.
6. The last copy is mine to keep.

I keep forgetting to do steps 4 and 5 even though I already have the copies of the form more than a week now. I’ve been too busy, busy, busy. And frustrated. The instructions for the application only stated that copies are for those departments, but they didn’t actually TELL you that you NEED TO GO to those places YOURSELF! And, heck, state AND federal departments? Aren’t these government procedures suppose to be integrated?

It’s just ridiculous. Goes to show that the Sabah government is still very much backwards in terms of adopting new technologies to make their jobs more efficient. Instead of helping, this just adds more stress to us families who’s already struggling to get assistance.

Let’s look at the positive side. I’ve applied for the OKU Kad for Edry. At least that’s one step closer to getting the whole deal done. I only need to find what little time I have in this hectic life to do the rest of them.

I recently found out that a couple of books that I was planning to buy are actually available online for free! These are highly recommended by parents in the Ds support groups I joined.

The materials cater for all age group, but as for me, I’m going to focus on reading the ones that fit Edry’s age group:

• An overview of the development of infants with Down syndrome (0-5 years)
• Speech and language development for infants with Down syndrome (0-5 years)
• Reading and writing for infants with Down syndrome (0-5 years)
• Number skills development for infants with Down syndrome (0-5 years)
• Motor skills development for individuals with Down syndrome – An overview
• Social development for individuals with Down syndrome – An overview
• Issues for families with children with Down syndrome
• Education for individuals with Down syndrome – An overview

I honestly love Downsed.org!

I received a couple of e-mails soon after I blogged my previous post, asking me if I was OK.

Yes, I am fine. Am I angry? Nope. Just tired, I suppose. I just want people to stop telling me that Edry doesn’t look like he has Down syndrome, or that he is special, or that he “brings good luck” (“bawa tuah” as you would say it in Malay), or that I am strong, or things like that which I’m lately prone to categorize as prejudiced crap.

Down syndrome has nothing to do with looks. That’s not what us parents are concerned with. It’s the health risks associated with having Down syndrome is what worries us.

Why does having Down syndrome make him special? What about his other brothers? Each and every one of my sons is special.

What’s with this “bawa tuah” anyway? If you’re saying that Edry is fortunate to be healthy, then yeah. Otherwise, isn’t this undermining his older brothers? Are Eric, Joel and Ezra going to bring me trouble? In any case, I don’t believe in luck.

Me, strong? Forget it. That’s undermining other parents, too, you know.

I’m laughing inside now. You might think that anything you say to me would insult me

You know what things I don’t mind talking about? You can ask me what Down syndrome is, if you don’t know. You can ask me how it felt when I first found out about Edry’s diagnosis. You can ask about Edry’s health. You can ask me how I’m coping. You can ask how you can help get involved with assisting people with special needs. You can ask me about how I’m addressing Edry’s needs and where to get help.

Life is different, yet it remains the same. I’m not in denial of his abilities, but the fact is, he’s just like my other kids I have to take care of. Really. It’s not easy, but it’s not hard, either. It’s as challenging as raising Eric, Joel, and Ezra, you know?

It’s the uncertainty that scares me, not living it.

So if you’re not sure what to say to me, just smile. Or ask me how Edry’s doing (to which my standard response would be, “He’s healthy, thank you,” with a dash of smile… unless he is sick, of course). Or ask me about the weather for all I care. If you’re really curious, tell me that you are, and I’ll do the rest of the talking

“How did he get it? Was it something you did during pregnancy?”
I want to say: Maybe when I reincarnate as a scientist in my next life, I’ll let you know, OK?

“He looks normal, doesn’t look like he’s sick.”
I want to say: Sure, like if you get Alzheimer’s one day, you’ll stop being normal.

“How bad is his Down syndrome?”
I want to say: Hm, I don’t know… do you know how bad your stupidity is?

It’s a dangerous thing, being ignorant.

You don’t “get” Down syndrome, it’s not contagious and you either have it or you don’t.

And what is normal, anyway? If you are mobile enough that you can travel anywhere you want, are you considered normal? When you get old and your eyesight gets weak and you still can travel anywhere, are you considered normal? When you have mastectomy (breast removal) due to cancer, and you still can travel anywhere, are you considered normal? If your legs got amputated, are you abnormal or disabled? How about this — if you get assistive tools like wheelchairs and artificial legs and can travel anywhere, are you considered normal? I have near-sightedness and I need assistive tools (eyeglasses / contact lenses) to see better… does that make me normal/abnormal?

And about how “bad” Down syndrome is? I wish I have the words for that, except, maybe, just giving them “that” look would just be enough.

Words can be a self-fulfilling prophesy. This is why parents whose children have a disability are very sensitive about how the person and the disability is addressed. My child is not a Down syndrome child, he is with Down syndrome. Would you call you child a fever child, if your child has fever? And, the 6-letter “R” word, mostly used in a negative term, is insulting, too (in Malay it’s called terencat, which is equally negative). It’s as bad as the 6-letter “N” word that people used to address the African-American community.

So choose your words carefully. Stop being afraid of these differences. Start learning about them.

I have more to say. Don’t worry.