I almost can’t talk about Liam — at church, anyway — without having someone try to soothe my feelings. (No matter how happy I am.)

About 3 weeks ago he developed stranger anxiety. Although not all babies ever start freaking when a stranger is near (or picks them up), it’s a sign that they are drawing distinctions, so it’s a developmental milestone. The next week I bragged on him at church to Mrs. X. She reassured me that it was a good thing!

Well, yes.

Or, there’s Mrs. Y. She told me that before long Liam would be doing some other developmental thing.

I said, “I don’t think he will.” (It was something that doesn’t fit his personality. I don’t remember what.)

She said, brightly, “Well then he won’t!”

I knew exactly what she meant: that I should take comfort about that he would do this thing; or if I wouldn’t take that, I should take comfort that it was OK that he wouldn’t.

Then there’s Miss Z, who apologized for saying Liam might be normal in some developmental way, because that implied he might not be completely normal, and who are we to say what is normal, and maybe him having Down syndrome was no worse than our usual little foibles or petty neuroses, and –

I’ll be kind and assume this is all well meant — and point out that it’s just not helpful. If you feel the need to comfort someone, you might first check whether that someone looks distraught. And even if he does…

Let him have his sadness. Even if he didn’t need to feel it — and I sure did, those first few weeks of knowing about Liam’s Down syndrome — you couldn’t stop him. If you don’t need to be around it, you can greet him later. If you don’t need to be protected from his sadness, then just be there with it.

If it’s there. So far, every time someone tries to reassure me that Liam will be just fine, it’s at a time when I’m not sad at all about him. For the very good reason that I’m almost never sad about him — unless I was just looking at a baby of similar age doing much more than he is. Or hearing my friend X-prime talk about how his girl of the same age is almost up to doing vector calculus. I exaggerate slightly.

Thing is, sadness doesn’t go away when you cover it up. If you succeeded in getting your friend to bottle it up, you’d be turning legitimate grief into long-term melancholy. Better to hope you’d fail!

Probably the best reaction I’ve gotten from anyone in this regard was in those first few weeks, when my colleague Glenn Buck mentioned to me an “early learning” center he’s involved with. I told him I wasn’t sure what Liam would need, because he was going to be riding the short bus. (Internationals among us: American school districts commonly have a miniature bus for taking mentally handicapped students to special classes. And, no, I don’t know that he can’t be put in regular classes. It was October 2008, and I was still a little dazed.)

Dr. Buck said, “That’s OK. We take students of different ability levels.”

That is, he didn’t try to fix me. He just showed me what he had to offer — that there might be ways to help Liam. I’d way rather have that than fluffy words.

Or Dr. DeClair. He spoke with gentleness, and offered to put me in touch with a colleague of his with a DS child. (If we hadn’t already known pretty well the parents of a one-year-old DS girl, I’d have been on the phone that night to his colleague.)

Or Mr. Minter. “God’s special children,” he called DS people, when I first told the Knights council. Not something I wanted to hear, exactly, because it tells me Liam’s different. But it also tells me that God cares. The bad and the good. I can live with that.

Is it a man thing? No man has tried to comfort me; only women. (No, that’s not true. One man did.) But I don’t think it’s a man thing anyway. I’ve seen women before react with annoyance when people tried to stop them from feeling what they felt.

In any case . . . maybe my best approach now is not to continue to squirm away from this advice, but to say, “It’s OK, really. I don’t need reassurance. Your good wishes are all we want — and it’s clear we have them. Thank you!”

And . . . the best reaction was the one we got from family (OK, not the this-isn’t-happening reaction, but the other), and from one of my high-school teachers, and from so many others:

“Oh, he’s so cute! Can I hold him?”

To which the reply now will probably be: We’ll have to consult him. Stranger anxiety’s kicking in. It’s a developmental thing. Liam, you want to go over and say hi? You lean forward when you want to go and turn away when you don’t. You’re developing communication, too.

Cool.

This post first appeared on my blog, Letters to Liam.

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We took Liam to First Fridays, a display of local art talent (complete with punch and snacks, of course).  I expected him to show no interest.

I was really surprised at his reliable reaction in one gallery, full of colorful expressionist urban landscapes and abstract paintings.  I’d put him up to one of those huge paintings, and he would laugh and flap his arms in a caper.   He was excited.

(The pictures here aren’t from that gallery; but they’re colorful and therefore similar.)

Then we took him to another with small photographs; and another with black-and-white spidery drawings of ferns (all over the floor, wall, furniture, fruit basket, fruit…).  He gave a different reaction:

We’ve got to get that baby some posters — garish ones.

In other news:  he’s supported himself sitting for about 10 seconds.  Do I hear 20?

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Good times could make boring reading . . . but maybe not boring pictures?

After a worrisome April, May and June, due to his infantile spasms, and a long time with no laughing, because of the medication . . . Liam has had a very happy week.  It’s been delightful.

(And in addition to all that smiling and giggling, he’s done these new things:

• passed toys from one hand to another
• put his hand down on the floor, when I had him sitting with support, to brace himself.  That’s said to be how they learn to sit
• found that he can put a cloth over his face and then take it off again, rather than putting it on and wailing because he can’t see!)

Now, Liam’s main activity for the week:

They say babies’ smiles are there to remind the parents, “I’m worth taking care of!”  I believe it!

(This post is also at Liam’s site, Letters to Liam.)

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(Hat tip: HotAir via Creative Minority Report)

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He’s discovered his lungs.

When he whimpers and cries over and over while Marisa is feeding him, taking the nipple out of his mouth so he can complain how hungry he is, crying in the car seat, crying when he’s being held, and, yes, screaming bloody murder when I’m changing him, because he wanted food to come first . . . it puts my nerves on edge and makes me crabby.

Marisa was worried about me, and I find that loving and sweet. She brought Liam in and said for him, “I love my Poppa. I just need to scream, too!”

But much as I wish he could find more joy in the world right now (so the rest of us can too), let’s think about it developmentally. He became more dissatisfied with the world after he became a lot more aware of it around mid-December, more alert, more energetic and involved. I’m glad he’s more involved! The flip side of his screaming is his smiling — which he did in church on December 14, dispelling our growing worries that he was hitting his first delay, and making me get teary-eyed. We love his smiles!

We love how much more attention he’s paying to the world — staring at me incessantly (which feeds my ego no end), laughing when Marisa sings the ABC song to him, watching us from across the room, talking and cooing . . . it’s all so normal, so delightful, so much what we needed to see so we could stop worrying about Down’s-related delays for a while!

And we love the way he sticks his lower lip out in an exaggerated caricature of a pout, and trembles it. Can you make your lip tremble? It’s a lost art!

When he screams something like, “This is worse than feeding me to alligators! This is like pulling my toes off! It has to stop NOW!” — and when he does it because I’ve pulled the bottle out of his mouth so it can refill with air (!) — is he showing anticipation, remembering what he wants to feel? Is there a sort of proto-deceit, in which he works himself up into a tantrum, because if a little crying gets him fed, a lot more will do it all the better? Even if it’s just Pavlovian learning (crying worked before, so I’ll do more of it), it shows he’s thinking more outside himself.

Yes, I’m serious: I’m actually happy that my boy may be showing the capability of deceit (self-deceit), because it’s development of a mental ability. If he didn’t have Down syndrome, maybe I’d roll my eyes and say, Yeesh, original sin sure does come early! But from me, even a tantrum is better than being unable to work up a tantrum. I’m proud of his initiative. Isn’t that bizarre?

And he’s so much more fun to play with now. I suppose it really is two sides of a coin: he’s much more present with his views. When he won’t stop wailing, I want to pull my hair out. But when he won’t stop playing and cooing . . . he’s got me hooked.

(The original of this post is at http://letterstoliam.com.)

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This Sunday Times article caused a sort of stir. It shows what radically different world views there are. This is a truism, but in this case, it’s a frightening one. Writer Minette Marrin argues that the quality of life of a Down’s adult, and the effect on society, is awful enough that abortion is a runaway best choice.

We could just dismiss the article for the basis of its argument: her mistaken belief that Down’s syndrome adults lead miserable lives. But I don’t want to just drop it, because it shows us so much about the way people think on the other side of a chasm of belief.

Marrin’s claim that Down’s adults are miserable is based partly on the higher incidence of diseases, but very prominent is her (mistaken) belief that Down’s adults never have sex. Better to die than be celibate? Actually, I kind of relate to this , but seriously, I can’t put forth a belief that a sexless life is not worth living. Marrin isn’t embarrassed to put it front and center in her argument. (She does not mention marriage.)

The article also shows a divide regarding language. For her, eugenics is an “ugly word” and should not be used to describe views that belong to her. But actually eugenics is a euphemism (it’s Greek for “well born”), for killing or sterilizing those that deemed unfit — that is, it’s a nice way of describing her recommendation for Down’s babies. But for her, the evil exists not in the act, but in the word.

Finally, figuring prominently in the article is that loving someone with Down syndrome costs time and money. She didn’t make it her main point, but: someone actually advanced government budget constraints as a reason that my wife and I should have killed our son. It wasn’t too crass to say.

Oddly enough it doesn’t get me angry. Anger is the emotion of protecting you and yours, and I don’t think anyone’s coming after Liam. Sadness is the emotion of loss, and I’m not feeling optimistic about the so-called culture war these days. The casualties are too high.

(The original of this post is at Letters to Liam.)

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