Reading materials for infants with Down syndrome now online

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:

I honestly love Downsed.org!

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I’m not sure what to say when they ask, part 2

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 ๐Ÿ™‚

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 ๐Ÿ™‚

I’m not sure what to say when they ask

“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.

Life is special with Down syndrome

I’ve been watching a Web docu-series called The Specials, about the lives of five people living together. They are so inspirational, and full of character! Sam’s the cheeky guy, Lewis is pointedly funny, Lucy’s the responsible one, Hilly is the romantic drama queen, and Megan is the quiet overachiever. Lewis has Williams syndrome, while Lucy, Megan, Hilly and Sam has Down syndrome.

The Specials – Season 1 Highlights from KADA Films on Vimeo.

You can watch the whole 10 episodes on YouTube, and it’s subtitled, for those of us who can’t understand their English accent. Honestly, I hope Edry doesn’t end up being like Sam. I hope none of my boys do! ARGH!

A new documentary will be made as well, chronicling the lives of Hilly’s parents, Carol and Dafydd Williams, on how they set up the group home in the first place. This is a topic near and dear to my heart — how to care for Edry once he’s grown up, and in case I’m not around long enough to be with my kids. Who knows… this may be my calling.

Eric is 9

Big brother Eric officially turned 9 yesterday. He wanted to celebrate it in Tuaran with our relatives, so I’m holding off buying the cake until tomorrow when he goes there (we planned to go today, but he misbehaved just now so he has to wait until tomorrow if he behaves well today). Yesterday was school day and it’s still in the fasting month, so he can’t bring a cake into class. I only took him to dinner at his favourite restaurant, Pizza Hut, after all of us returned home (by the way, I’m back at work after an almost-restful maternity leave, and why does Eric have to like Pizza Hut, the slowest fast food joint in the world with the worst service).

Don’t pity him, don’t pity me

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.