Tales of Liam

Peers

2011-03-26T19:17:00.000-07:00

I was reluctant for it to happen -- but it's not like it's something I can control.

Liam's visiting teacher suggested we get a clear canister, put something Liam may want in it, and get him to hand it to one of us as a way of communicating, "I want help with this." Not an easy task: if he doesn't want it, he won't do it, and if he wants it too much, he'll shake it, see it doesn't come out, get angry, throw it, and want nothing more to do with it.

Marisa was able to move it with his hands toward her, open it, and with just that he was able to get: I hand it to Mommy and she'll take the ball out. (It turned out to be more interesting to put the ball in, put the lid on, have us screw the lid tight, then hand it over for release, take the ball out, and restart the process, than to actually have the ball.)

We left the ball in, and Charles found it, cried, and when I went over, handed it to me. "Get this out for me!"

The teacher and occupational therapist had a toy guitar for Liam at a recent visit. Would he figure out pushing the buttons? While he looked it over, Charles came over and pushed them. I had to take Charles out in a recent teacher visit; he kept getting between the wait-and-see Liam and the toy and taking over.

Charles is looking over books and saying "woof" (or at least "ff!") when he sees a drawing of a dog. Liam recently followed through a reading of an animal book and made at noises of the animals: neigh, baa, whoo, and of course moo.

I've been feeling sadness when I see Charles catch up. But now it's pretty close to a reality: Charles is trying to run while Liam's still (competently) walking. Charles doesn't have as many words as Liam yet ("hi" and "woof" to Liam's "hi," "no," "toes," "down," "off," "pop"), but he's approaching fast. Liam can put gears on the gear toy; Charles is close. Liam can stack rings; so can Charles. Charles hasn't mastered that whole "feet first when coming off the couch" thing, but he can hand us toys and now points to things he wants (incessantly).

Maybe it's partly personality: Liam is cautious; Charles says, "So what if I face-plant into the door frame? I'll worry about that if it happens!." Maybe it's partly birth order. Maybe it's interest: Charles wants to manipulate things more; Liam's more into music. (Know any Down syndrome rock stars? opera singers? Me neither.) Though Charles is now getting the point in dancing and Liam's of course trying to get control of his hands, when he isn't too pissed off at the possibility of failure to try.

But of course a big part of it is that no-expletive-is-bad-enough Down syndrome.

Yet, while I have teared up a little, I guess I'm adjusting.

Maybe now that Liam is no longer clearly in charge, disdaining his little brother in a stereotypical way, maybe he'll pick up some things from Charles. Maybe his one time of repeating animal sounds out of a book was because Charles was getting it. (Or maybe not. It was different animal sounds.)

Or maybe I'm just telling myself that. One thing seems clear: Liam learns when he's ready to. Sometimes I think all this therapy has no long-term benefit. But I'm sure it has short-term benefit, in that if he didn't have it, he wouldn't be using a spoon or, say, asking Marisa to take a ball out of a canister. We shall see.

Keep your distance!

2011-03-11T07:42:00.001-08:00

I got way too much enjoyment from this. A lady at church came up, gushed over Liam (and that's not a crime, is it?), touched his cheek, and said, "How's Liam today?"

I said, "Sick. And contagious."

She whipped that hand back and said, "Why didn't you put a sign on him?" I didn't have a comeback.

I don't want people I don't know putting their hands on me, and Liam likes it less than I do. He pulls away, pushes their hands away, and . . . they just keep coming. While I step backward and turn him away from them and they step forward and walk around me.

Liam's got a personal space thing with me, too. He pushes my hand away sometimes when it's on his tray (feeding him) or even when its around him keeping him from falling on the floor.

Is it a terrible two thing?

Have I transmitted it somehow -- genetically (I don't know), by example (don't think he's that observant), or by being too invasive of his personal space?

Or maybe it's DS (Dang Stubbornness). Or maybe it's being two.

Whatever it was, I find it inconvenient when I'm trying to put a shirt on him, and I secretly think: you go, boy. Assert yourself.

You are so full of it

2010-12-19T18:23:00.000-08:00

I've mentioned before my brother-in-law's principle that you can tell an involved father from an uninvolved one by saying "five-wipe diaper," and seeing if he says, "What's that?"

I thought: you are so wasteful. Use one side, fold it over, use one side of that, fold it over, keep going till it's the size of your big toe, and you won't need more than two. Maybe three.

That was before Monday night.

I was doing something at the church and the nursery worker came to get me. She said Liam was wet and his bag had no diapers in it. True, but the nursery had some Dora the Explorer diapers, which I am not posting a picture of because Liam's manliness might never recover. But by time I was there he was more than wet.

It made it outside the cloth diaper, outside the diaper cover, outside the onesie, and onto his pants. It was from his ankles to his midriff. It got onto the changing table cover. Everything he was wearing was tainted with brown. As I washed out the diaper, I counted 6 baby wipes I'd used. I was very relieved the babysitter had come to get me. She might have run away and never come back.

Both boys have both been really full of it for a week. (How do you get it not just around the edges at the legs, but all the way around the front of the diaper? Maybe he took off the cover and rubbed it around with his hands, then surreptitiously washed his hands. I wonder how he reached the faucet.) Sometimes Liam's taken a bath because we couldn't get it all gone otherwise. So when his godmother Kim asked about his cranky mood one evening -- "Is he pooping OK?" -- I said, If there's a correlation between poopiness and happiness, these boys would have reached higher levels of consciousness by now.

And since we're keeping the diaper pail outside in snowy conditions -- to keep the house from smelling toxic -- it's kind of interesting to take it inside, break up the frozen diapers, and put them in a hot-water rinse in the washing machine.

(Any prospective parents out there: cloth diapers really aren't a problem most of the time. And paper's been blowing out too. Maybe they'll start marketing: Disposable diapers with 1-cup volume control pocket! For babies who are absolutely full of it. And need 6 or more wipes per event. Wipes sold separately.)

This side of beriberi

2010-12-17T14:56:00.001-08:00

I'm inspired by a recent conversation with experienced parents about the travails of getting children to eat their vegetables -- complete with negotiations, hidden evidence, malingering ("my tummy hurts") and enlisting secret help from the dog -- to a resolution:

Tthere is no way, after hearing their struggles, that I'm going to struggle to cajole, argue, order, or force food into Liam's unwelcoming gullet. (Although I'm not above trickery. Lima beans in the grilled cheese. Is that wrong?)

Why do parents do all this?

I understand it now that Liam has developed allergies. Allergies to lima beans, brussel sprouts, green beans, winter squash, summer squash, fruit, melons, and in fact anything that isn't meat or starch. If he could I think he'd declare himself allergic to everything that you can't find at Mickey D's or a pizza joint. It's so . . . stereotypical. Except that he won't eat ice cream either. He looks at it and says, "What are you trying to pull?"

(And Charles says, "Don't worry about it. Just give it to me!")

Still, I think the effect of micromanaging someone's eating is worse than the effect of eating too many chicken fingers and not enough cauliflower. Few children I know have developed pellagra or kwashiorkor, but many suffer from power struggles at the table. I remember my old friend "Dan," who could only eat about twelve foods without gagging. To be sure, that level of mental distress resulted from abuse at the table that rose to the level of criminal.

But those I know who had loving parents -- but still had regular mealtime dramas over what they had to have -- also often have limited lists of things they'll eat.* Thing is, those limited lists don't seem to include green stuff! Forcing vegetables into children has the effect you might expect: they come to hate them more than they did before.

And as boring as vegetables inherently are, that's a shame. You really should eat your vegetables.

*Unlike me. My parents didn't care what I ate. And now I'll eat anything from steak tartare to sushi to fried okra. But not boiled okra. That's just gross.

Charles pulls to stand for the first time!

2010-11-05T20:06:00.000-07:00

Look how proud he is of himself!

Down syndrome adults

2010-10-31T18:49:00.000-07:00

Almost every time I run into a Down syndrome adult, I get discouraged.

We ran into one at Logan's today -- or, rather, into his parents. Sure, he was present, but we talked around him, while he looked at his parents. He could answer simple, direct questions put to him, and his mother kept telling him to talk to us not just to them. He was having trouble with his shoes -- crammed his foot into and and crushed the heel. "Tell them where you work," his mother said.

"Bakery," he said.

"What do you do there?" Marisa asked.

"Work," he said.

He's thirty.

His mother also had an explanation for his trouble focusing on who he was talking with. "They lose skills sometimes, and then they come back -- it comes and goes."

Now, we saw a more functional Down syndrome woman downtown last year. She was at an art show, and sometimes her art was in the show. She could hold a conversation. I'd rather Liam focus on something other than being a starving artist, but if he can do as well as she, my hopes will have been realized.

But usually those hopes take a beating when we see a DS adult. Which to me shows that my image of what Liam will be is, well, not the average. God help him. I want him to be able to advocate for himself. He certainly seems to have an interest in self-advocacy! "Don't change my diaper -- I'm busy playing! Nooooo don't put me in bed! Pick me up! How could you do this to me -- feeding me green beans!" Skills are another matter. And . . . are Down syndrome adults as compliant as they seem because they're trained to be by those with power over them? because it works better? The topic is frightening.

Being noncompliant could be worse, and maybe they're terrors at home. I have the image of them as being compliant, but in some blog recently I read of this exchange:

Friend of mother's: "Down syndrome people certainly do seem to be good at loving and caring."

Mother: "I'll remember that the next time she tries to put the cat in the dryer."

One thing's for sure. I'm ready to see some more functional DS adults. Or have reason to believe things are better with modern technology and Liam will have a stronger future. But I sense something (realism?) creeping up behind me, and I don't like it.

He imitates!

2010-10-30T11:33:00.001-07:00

Liam slapped his hands on the platform at the playground. Marisa put her hands on it and made polishing moves; he did the same. She patted it; he did the same. "I wish I could think of something else I could do here," she said.

I tapped my thumb on the platform, because he does that sometimes; he imitated it!

Then Marisa slapped the bars; he did the same.

She grabbed them and shook them (like a monster grabbing the bars to his cage); he did the same. Repeatedly.

This changes everything. Now we can teach him things by modeling them, at least sometimes.

Marisa would point out that he's already done some of this. Liam often plays with his toys "inappropriately," his teachers say, meaning not that he's being sued for harassment (!) but that he is using the toy in a simpler way than it's intended. (The reason this matters is that he already knows how to enjoy shaking something or banging it, but he needs to know cause and effect, and how to be the cause himself.)For example, he sometimes licks the wires in the toy on the right rather than moving the blocks along them. But last week Grandma modeled correct play, and later on Marisa noticed him doing it himself.

He's grabbing the cords on the baby swing to hold himself steady.

And this morning at breakfast he signed "more!" when Marisa asked verbally, without her modeling the sign.

"He's going to be OK," I said to her this afternoon. Of such things hope is made.

Brothers, but Lordy, how different

2010-10-15T07:30:00.000-07:00

Now that we have two babies, it's easier to see what's personality and what's just being a baby. Personality is a lot. Here's how theirs differ.

The first time eating solid food

Liam needed it now. When he first got it, he seemed to say, "What are you doing? What is this? Well, don't stop!"

Charles: "Is this really necessary? I was perfectly fine with just Mommy."

Trying new foods

Liam: we took him through the pediatrician-approved sequence: 3 or 4 days on rice powder. Then 3 or 4 more on oatmeal. Then add another food every few days, so if he's allergic, you know what to. He said, "Whatever. Just feed me." (He's picky now.)

Charles got this strained look on his face when we fed him powdered cereal or pureed vegetables, as if he were too polite to say anything but couldn't keep the distaste off his face. We saved out some butternut squash, a baby-food staple everywhere, from the curry, and he said, "That was (ack) interesting. Please don't do it again." So we gave up and gave him curry, red pepper and all. He said, "That's what I'm talking about!"

Self-feeding

Liam: "This is outrageous, and you are cruel, cruel parents to expect me to touch my food!" Then he'd sweep his tray and throw it all on the floor and cry.

Charles: "Get out of the way and let me eat!"

Toys

Liam: "That toy is evil. That one's scary. Stop telling me what to pick up. I'm going to go play with something familiar."

Charles: "Give it to me."

People

Liam: "I love Mommy and I love Poppa and I think Meg is totally cool. But so are my toys. I'll just play with them now, alone."

Charles: "Is there a reason we can't just live in a party all the time?"

OMG

2010-10-10T17:52:00.000-07:00

Friday before last we went out to eat, just the four of us. (Because the two babysitters who called us back either aren't available weekends or can't arrive till roughly Liam's bedtime. I'm posting a new ad tomorrow.)

After Liam had fallen apart twice -- crying unconsolably, mouth wailing and wide so you could see what was left of the breadsticks -- and Marisa took him out twice . . . I strapped Charles into his car seat (causing him to cry -- he hates that thing), got to-go boxes, and we took them out. To the Putt-Putt next door, so Liam could crawl around a little.

Since that time, we've pretty much resolved that if we go out, it will be to Mickey D's or another place with a Playland. We've violated that once: the college cafeteria. Pretty disastrous there, too, both in terms of Liam's mood (mad as could be) and the rain of dropped Cheerios and flung food on the floor.

Meanwhile, Charles has entered a phase (It's just a phase. It's just a phase.) in which being more than 18" away from Marisa causes him to wail. He often wails anyway. This afternoon we gave up and put him in his crib; he cried for over an hour. (He's not sick: he smiles as soon as she's holding him again.)

In vain have we pointed out to him that human beings are not marsupials.

Marisa's getting very stressed, to the point of forgetfulness ("What was I saying?") and I'm trying to be home more, and that's not working too well; this is the busiest semester I have ever had in some 18 years teaching and more than that on the other end, and would be even if Charles and Liam were being totally cared for by a fairy godmother.

I don't mean to describe life as hellish. We're still having fun. But the stress level's in the red.

Night before last both of them slept through the entire night for the first time since Charles came.

And last night, Charles was up ever hour or so crying.

Purposeful communication

2010-10-10T17:47:00.000-07:00

No pictures this time. We are run ragged and it would take some trivial effort to put pictures up so forget it. (Topic of another post.)

But: I had to post Liam's latest accomplishment.

Not standing free, which he's been doing for some three weeks. Yay!

Not taking a couple of steps, still unsupported -- if I'm close enough he thinks he needn't sit down and far enough he can't just grab my trousers. He can step! Yay!

But tonight we followed our visiting teacher's suggestion: I blow bubbles, and Marisa tells him to say "More," making the sign. Sometimes moving his hands, sometimes modeling it or moving Charles's hands to model it -- I think moving his hands was the only thing that really did it -- and the teacher says, they'll often move your hands to make the sign.

But he got it. He's waggling his hands back and forth -- OK, close enough -- and looking to make sure I blow more bubbles!

This is his first purposeful communication. He does it with annoyance -- why should I have to say what I want? You already know! Do it! -- but he does it. And then he gets to see the bubbles, and smiles.

How to help this boy: emotions and learning

2010-08-23T19:05:00.001-07:00

Liam's keep interfering.

OK, they also help. He loves his push-mower toy. Until it comes up on the edge of a rug. It doesn't stop or turn over, but it bumps, so he gives up, sits down, and fusses.

His learning to feed himself, as I noted in the last post, is inhibited by his demand that everything work perfectly the first time. (Yes, I do see echoes of myself in this.)

How did I end up with a perfectionist baby? Isn't that kind of like having a dog that's an intellectual snob? And of course a Down syndrome child with perfectionism is an even greater stretch.

If only we could reverse Charles's and Liam's birth order! Because Charles acts like you'd expect a little brother to act: he watches Liam and thinks, I'm going to do that. Thus we end up with Charles wanting to eat Cheerios just like Liam, wanting to play at the music table just like Liam, and (I think) wanting to crawl just like Liam. (And Liam acts just like you'd expect an older brother to act: turning away as if Charles is beneath his notice. After taking whatever toy he's playing with.)

So Charles's emotions motivate him, and Liam's inhibit him. If Liam were the younger brother, his admiration would lead him to do more, I think.

And (per our book on Gross Motor Skills for Down Syndrome Children), Liam is a watcher, not a doer -- meaning he needs to watch and make sure something's safe, rather than diving in. That is, he's like me and Marisa.

Ah, well. Their birth order is what it is. (Although eventually their developmental order will change; but here's hoping that time will be delayed by Liam continuing to progress.)

I welcome advice from other parents of disabled children. What's worked? I wonder if the answer might be what I always thought would work for other children -- and adults -- find something you love, and do it. Like Liam here, when we each took an end of a cord and waved it like a jump rope.

So I guess I'd better get that damned rug out of the way so Liam can hit no bumps on the path with his push-mower toy.

How to help this boy: incremental learning

2010-08-22T18:50:00.000-07:00

I'll be writing some blog posts now about the issue of how to help Liam learn. (I don't think anybody thinks "Leave him alone and he'll be fine" works for DS children. Or other children, for that matter, past a certain age.)

Liam's been eating from a spoon for a while, if you count touching a spoon I pick up for him, pulling it to his mouth, then letting go before it makes contact. That is, he participates, but without me... I tried yesterday morning letting him have it. He put it in his mouth, let go, and looked hilarious with a spoon sticking out of his mouth. (No pics; it's too short-lived.) But he doesn't think it's funny. He then shakes his hands the way he does when he's frustrated, grabs the spoon and flings it across the room (taking the cereal with it, alas), and cries.

I've been able to overcome some things by guiding him, or doing something partially. When he got his haircut (from me), he was so upset he didn't really get over it all evening. His next haircut took three days. I'd go around him with scissors when he was in his high chair, and try to get snips when he was busy with food. Usually he'd turn to look. Then he'd start getting angry, and I'd stop. Eventually he decided that it wasn't actually torture, although he still resists.

We haven't been able to get him to flip light switches by guiding his hand. He resists. He's a stubborn cuss, and he says, these are MY hands -- do NOT presume to tell me where to put them!

This spoon thing . . . I don't know how to make it gradual. I did alternate unguided with guided and me just feeding him, so it wouldn't be as upsetting. (Didn't work. The next day he remembered as soon as the spoon touched his lips, and threw it.) But if I give him some guidance, that means either I pull the spoon out of his mouth (using his hand to do it), or I don't, in which case it stays there and he gets angry. He absolutely will not keep his hand on the spoon once it's made contact with the mouth. He always pulls his fingers away as though it's icky.

Our PT said one of our big tricks will be to get him to want to do what we want him to do. More on that next time. In the meantime . . . anybody got some good ideas?

Crazy little thing called "sleep"

2010-08-18T22:49:00.000-07:00

Someone gave us a framed photo of the Holy Family. To me it shows a sort of humor: Joseph is taking care of that Baby because Mary is totally wiped out.

Trouble is, with one baby that wakes up because he's hungry and won't go back to sleep because of his Constitutional right to be held at all times . . . and with another (Liam) that has been

waking up over the last few nights wailing unconsolably . . . something in my brain tells me, there's no point in going to sleep. You're a jerk if you go to sleep. Marisa needs you to be awake. Marisa strongly disagrees. Because in the morning I am useless.

I don't know what's wrong with Liam. I think it's respiratory, and that it's light enough it doesn't bother him when he's not trying to sleep. When he wakes up fully, he gets over it. Then we put him back to bed, and after a while he wakes up wailing again. Poor guy! The stuff we got for him (a Sudafed clone, plus something else I can't remember) helps some. Not completely.

But maybe it'll be enough. I'll try going to sleep again. Everyone else seems to have.

Rules of the house

2010-08-17T20:08:00.000-07:00

1. Other people's tongues are not for touching.

2. Your brother's head is not for climbing on.

3. Splashing is fun, but not in the toilet. (If we hadn't been in such a hurry to stop it, we'd have pictures.)

4. Your milk bottle doesn't like being on the floor.

5. Whatever it is, you don't have to eat it or throw it on the walls.

And several more in an essay called "Lamentations of the Father," way funnier than these.

The Mozart Effect

2010-08-12T12:22:00.001-07:00

I happened on this book in the library about how attention and intuition work. (I won't give the title till the end of the post, because you may first want to test yourself on the video here first.)

That was just for fun. But the book also contained two things related to therapies we might consider with Liam.

One: the whole MMR controversy. Does the MMR vaccine cause autism? It's administered shortly before the age that autism is usually diagnosed. When people started fearing it, the information came out in the UK, which showed a decline in vaccination rates; but autism rates stayed consistent with the US rates, where vaccination was continuing as before. Later studies showed that omitting the vaccination had no effect on the likelihood of diagnosing autism.

Yet people still fear the vaccine, because of stories: "I had my baby vaccinated, and in a couple of months she showed signs of autism." Would you want to take the chance?

The same thing with things like TNI (Targeted Nutritional Intervention). "After adding TNI, my child learned things he'd never had before." (As children of that age tend to.) Maybe there's something to it. The only study I could find online showed no benefit to DS infants from TNI; but it's hard to measure things with infants. Maybe they should have tried with children further along.

And... the Mozart effect.

Ruascher et al, in October 1993 Nature, revealed results of an experiment showing that college students did better on IQ tests after listening to Mozart.

Thus we have Baby Mozart, Baby Einstein (since shown actually to correlate with poorer infant performance in tests, for whatever reason), and . . . nobody else has been able to duplicate the original results. Trials by someone named Steele led to a press release: 'Mozart Effect' De-Bunked; quickly changed to 'Mozart Effect' Challenged, after one of the original authors threatened a lawsuit. So much for the pristine reliability of peer review.

But research continued, showing teens did better on tests after listening to pop music, rather than Mozart. I wouldn't put too much in that. The next test may show they do better after watching South Park. But if Mozart makes you smarter, why can't we consistently measure it?

And while studies on teens and adults debunked the idea, Mozart for babies was taking off.

It feels right. Mozart is highbrow. It makes me feel oh so cultured to listen to it. We hear it as background music for documentaries about history and art and culture, but rarely for body-count movies. We've trained ourselves to associate it with smarts just as we've trained ourselves to associate the Linus and Lucy theme with Peanuts.

So the Mozart Effect will live on, even if it has no effect on intelligence.

And we'll do Sudoku to ward off Alzheimer's (it really annoys me that nobody's been able to show a link for that either). Does this impact the therapies we do for DS children?

It does seem that Sudoku doesn't help you remember people's names and crosswords don't help you solve Sudoku. (Sudoku does help you solve Sudoku-like problems like Kakuro, though.) If we want Liam to learn his ABC's, we'll have to teach him his ABC's. If we want him to read, he'll need books. If we want him to walk, that shopping-cart-like toy we have for him does seem wise; because he's walking, just with support.

My hope for Liam is that he will learn to spend a lot of time doing the things that are good for his development. If he wants to listen to Mozart at the same time, fine by me . . . but I won't expect Mozart to help him learn to count. Just to help him learn to appreciate music.

The book is The Invisible Gorilla, and Other Ways Our Intuitions Deceive Us.

To sleep, perchance...

2010-08-12T12:21:00.000-07:00

Why do babies need so much sleep? (Ours excepted.)

Because if they didn't, their parents would die.

Outburst

2010-08-08T19:31:00.000-07:00

CAN I ONE DAY TALK TO SOMEONE ABOUT WHAT LIAM'S LEARNING WITHOUT THAT ONE REASSURING ME IT'S GOING TO BE ALL RIGHT?

His learning is interesting. I would like to be able to discuss it without having someone manage my feelings about it for me.

/rant

Milestones continue

2010-08-02T22:16:00.001-07:00

About 5 seconds? of free standing, spontaneous today.

We played with a toy phone, and Liam said "Hi" into it. (Marisa points out it only sort of sounds like "Hi," but I'll go with it -- although we never say "Hi" into a phone. I think maybe it's his attempt to say "Hello." In any case, his vowel vocabulary now includes the I sound.)

And Charles struggled (futilely) toward a toy he wanted. Which I think is great for 4 months.

We now have Miss Donna, a helper who knows her way around children with disabilities, helping twice a week around lunch. Here's hoping she can get that boy to stop deliberately dropping his milk bottle on the floor:

and to communicate his lunch preferences without throwing food. This is his "I'm too cute to have to feed myself" look.

Dreams

2010-07-26T07:33:00.000-07:00

Up until now all the blog posts have been Will's. But last week, I felt the need to write my feelings and so I made my first ever blog post.

I had a dream last night. In the dream Liam was in our bed playing with us - as he likes to do. He jumped off the bed and started marching around the room; holding a stick - like a baton- in his hand. He was taking his first steps and loving it. We even had the camera right there and were able to take a picture of him (I should have known it was a dream at that point). I was so excited… then I woke up. It seemed so real to me.

I am so anxious for him to walk. I want him to walk by his second birthday. Maybe because it is just a recognizable milestone, but probably because the average age for walking for a down syndrome child is 24 months, and I don’t want him to be behind even down syndrome children.

It had been a tough day. We had a meeting with the school system to determine his eligibility for school next year. Over the past two months we have had many evaluations… physical therapy, medical, psychological, social/cultural, speech therapy, and an evaluation from a teacher. In this meeting we got the results of all the tests. He scored very low on all the tests; basically between 5 months and 15 months developmental age. It probably averaged about 11-12 months. We knew this, even before going to the meeting, but it is still hard. I am not sure I believe the 5 months. That would be like Charles (he turned 4 months old this week). I cannot think of anything that Charles is doing or about to do that Liam doesn't do already..

I am not sure what Liam should be doing at this point. Should he be dressing himself? That was one of the testing areas. I have 5 Facebook friends/family that have children within about two - three months older or younger than Liam. I get to see a little in their posts what the "typical" two year old is doing. Sometimes it makes me sad. People say don't worry he will do those things - he will walk. I know that. However, I am anxious for it to happen (not only so I won't always have to carry two children everywhere.) Also, I know that it will get to a point that he will not go further. When will that happen? I don't know. What developmental age will he be stuck at - 10? Younger? Older? I don't know.

Toooooooooeeeeeeees...

2010-07-23T23:52:00.001-07:00

Liam actually has done some significant new things lately.

The biggest one is so... weird. His first word is

"Tooooooooooeeeeeeeeeeees...."

We have heard him late at night, after everyones in bed, saying

"Tooooooooooeeeeeeeeeeees..."

It sounds like he's evoking a spiritual principle: softly, reverently, contemplating... toes.

We were happy enough about that. Since that time our friend Meg introduced him to "vroom!" for toys with wheels; and "moo" for a toy cow. (The cow has gender identity confusion, but that's neither here nor there.) Meg, you rock.

Liam also can go buh-buh-buh with fingers on lips (or without), and imitates when we do.

His sounds are mostly consonants (except "toooees"). "Moo" is "mm," and "vroom" is "vv" (or sometimes a sort of spitty bluster). These are good, and recommended by the speech therapist; he needs to learn these sounds.

His moods range from "Cool! We're playing with a ball!" (for which he can sometimes say "buh") to Nay nay nay I didn't have a nap so stop it! stop it!

Meanwhile, Charles is auditioning for an anime role.

Treasure each moment? Yeah, right OR Feeling blue, Part I

2010-06-16T07:55:00.001-07:00

We just went on vacation to visit family several states away.

It was exhausting. OK, this is hardly news, that traveling with babies is tiring. But I started feeling blue, because...

I didn't spend much time focusing on the people I was visiting. In particular, I started one conversation with Jonathan that wasn't in passing, and that one was promptly interrupted by Charles crying. Didn't spend that much time talking with others, either. Maybe an hour and a half with my aunt and uncle. Not much with Mandy. We spent our time taking care of babies. This, too, shall pass -- but I don't want our family relationships to also pass, based on my increasing focus on my own house, which seems to likely, given the distances. Waah.

I also recognized that these moments with Charles and Liam will not last forever. And I can't treasure every moment: as Marisa pointed out, that's something parents say after their babies are no longer crying every waking hour. That's not much of an exaggeration for Charles last week. (Colic, and it's better now.) I defy anyone to enjoy hearing a baby scream. Anyone who doesn't need serious therapy, anyway.

But those other moments... I have to focus on other things, too, like, oh, working for a living. So I miss some. And I miss others from other obligations. And I will forget the ones I experience. I can't remember a year later, sometimes, whether I went to a party or what someone important to me said; of course I'll forget baby smiles, or when Charles or Liam first did this or that milestone.

And that's very sad.

I intend to make more video. But I may not realize that intention. When the camera comes out, Liam stops what he's doing to stare at the camera. And we don't have a lot of beach pictures; I would rather play with Liam in the waves than stand back, refuse to pick him up, and get pictures of him feeling frustrated and scared because Poppa won't take care of him. Of course.

And I don't always give him my full attention when I can. I think of it. I realize he is more important. Then he comes up, clingy, interrupting what I'm doing, and I turn away to finish it. It's easier to say, "In a minute," than to remember that I could instead say "In a minute" to whatever stupid thing I was doing.

And (I told you I was feeling blue) one day I will die. Then the hanging out will be over. (I find nothing in the Bible to suggest that in the afterlife we get to hang with our buds. We have "many mansions" and a new Jerusalem and be with our Savior, but regarding earthly spouses we shall be "like the angels" instead of married, and I can't find any mention of meeting up with old friends or family, however close.)

Best I can think of now is to make those videos, somehow, and watch them again with Liam and Charles when they're older, to relive a memory I still have with the person the memory is about; the time won't be gone, then, and each boy can get that he was and is loved.

Guys' night out

2010-06-14T02:32:00.003-07:00

Since Marisa was at Ladies' Night (ladies only, but Charles got a pass), Liam and I went out for Chinese.

He can pick up his own food pretty well now. The occasional misfire is not usually enough to aggravate him. The spoon's tougher. As the speech therapist said: you have to move your wrist correctly or you dump the food out. It's not a huge problem if the food is sticky and you aren't a perfectionist (like Liam); more of a problem is the way he wants to drop the spoon as soon as it touches his tongue.

(And speaking of tongues -- his sticks out and makes a solid wall whenever a green bean goes near that mouth. It looks hilarious.)

And people kept staring and smiling indulgently. Sure, he's a cute baby, and some people just go gaga over Down syndrome children. (Which I find to be weird, but OK.) And one guy was just smiling at him because he was staring at the guy. But I think it was: oh, look, Daddy's baby-sitting. Isn't that sweet?

Self-feeding

2010-05-20T07:25:00.001-07:00

This week, I had it planned. I was going to insist Liam feed himself.

He has the idea that it's inappropriate and evil for us to expect him to touch his food. That's our job!

People kept telling us, "Just put food in front of him in his tray. When he's hungry he'll eat it." That baby would have starved to death before he did that. It would have been like telling him, "You can have your food when you solve these differential equations. I can wait."

And now I know what the barrier was. When it was clear he was going to have to pick up that spoon, he would try to take it, bang the food out by accident, say "Neh neh neh!" (means something like "NOOOOOOOOOOO!") and push the spoon away. That is, he was frustrated and angry. He did the same thing when he dropped food as it was going into his mouth. Liam, the Perfectionist Baby. "If I can't do it right," he said, "then I won't do it at all!"

I guide it to his mouth and don't let him drop it. He hasn't got it yet that you have to hold the spoon even when it's touching your mouth. If I didn't help, he'd drop it, or leave it sticking out of his mouth like a lollipop stick.

For finger food, I pick it up and wait for him to take it, and make sure he doesn't drop it before it's in.

He tried dodges. Trying to get his mouth close enough to the tray that he could take it out of my hand. He'd grab my or Marisa's hand with the finger-food and pull it and leave us the responsibility of stuffing it in. (I put it so my hand was out of reach but the food wasn't.) Marisa also reported him smiling and leaning his head to one side. "I'm too cute to have to feed myself!"

"Nobody's that cute," I said. He laughed.

In case you're wondering, no, he doesn't get distressed from the feel of icky food on his hands. I learned that about a year ago: I mashed up banana and shoved it onto his palms. He looked at me -- "What was that about?" -- and went back to waiting for me to put food in his mouth. So it's not a sensitivity thing.

A former priest of our parish, visiting, told Liam -- and us -- the secret of the good life: "pizza, and chocolate." So today I cut pizza into strips, moved it so he couldn't use my hand as a remote, and waited for him to grab it.

By the end of lunch he was carrying it the whole way, and when it wouldn't quite fit in, he'd follow my modeling of using his hand, not mine, to stuff it in. He wasn't good at it, but he did take at least one bite unaided except for the initial hand-off.

I wonder what it's like when other babies learn this?

Might have been easier if we'd taught him this before he learned pouting, which was sometime last week. (A PT told us, yes, that's a developmental skill.)

Meanwhile, Charles has smiled (3 days ago), and has decided to bat at a dangly toy. Lord, look at that face.

Separated at birth?

2010-04-27T12:42:00.001-07:00

Charles and Liam, in concert

2010-04-18T13:39:00.001-07:00

There's nothing left...

2010-04-17T17:18:00.001-07:00

Charles is waking up regularly at night (as he should -- newborns need to eat), and he does have a thing about being unwilling to sleep in a bed unless it's ours, but...

...Liam cries when I put him on the floor. If I can reassure him it's OK and he'll agree to play for a while, he cries when I leave the room. He needs to be picked up all the time. In a way, it's reassuring: it shows that he does get that something's different, and he's feeling needy, so it means he's aware of the world. OK. But I can't do anything that can't be done one-handed! Marisa deals with this more than me, of course, but he's especially needy for me, I think.

Earlier I thought, so he wants me. Do I really have something better to do than love this boy? But today, I reached my limit, and just let him whimper. (While standing at his table, while playing with his music toys, while sitting on the kitchen floor; he can do it anywhere.) He wailed to end his nap, then he wailed for about an hour when he went to bed tonight, and...

I went in later to put on the night light; sometimes he'll be calmer if he can see to play with his toys. He was so miserable. I picked him up, and he quieted, but still gave an occasional gasp of a cry. But when he had to go down again... you can't cry forever. Thank God.

I know it will get better. When Charles is physically ready to sleep through the night (and if he's not emotionally ready, I think he's just going to have to adjust!) we'll have more energy in the day. I had heard that the stress of having two wasn't twice the stress of having just one; having just one still stops you from deciding to go mountain climbing or bungee jumping or performing the opera or whatever the heck people do when they aren't parents. Wrong, in spades. It's more than double.

But they're still cute. And the bigger one knows it.

2010-03-22T06:21:00.001-07:00

Liam welcomes his new brother

2010-03-20T09:09:00.001-07:00

Actually, the pictures shows it well: Liam pretty much completely ignored Charles, who returned the compliment. Neither is big enough to find the other interesting.

Charles and Marisa are doing fine, and Liam doesn't seem to have been distressed at all to spend his time with Grandma and Grandpa instead of me and Marisa. Although he was happy to see us.

Charles is named after a great-great-uncle (actually, we just like the name) and his great-grandmother Josephine, who shares his birthday.

Alternative treatments

2010-03-17T02:44:00.001-07:00

When we knew Liam had Down syndrome, I had to check out alternative treatment, or even alternative opinions on medicine, to see if there was anything we could do to help. How do you know what's valid?

Consider these two scenarios.

Scenario one: baby gets the MMR vaccine, and a few weeks later is diagnosed with autism.

Some have come to believe that this vaccination causes autism. There was a study (since refuted and retracted) that claimed it was. I think that's when vaccination rates dropped in the UK; but the fear didn't make it to the US yet, and autism rates remained the same between the two countries despite the differences in vaccination. Increases in autism rates don't correlate to vaccination rates. And yet the fear continues. Why?

Because autism is usually diagnosed at the age shortly after the MMR vaccine would be given. So it's natural to draw a conclusion: A precedes B, so A caused B. When something seems to come at us at random, like autism, we look for a pattern.

Second scenario: Mommy gives Baby Dr. Feelgood's Magic Intelligence Drops, and shortly after that Baby learns a skill he'd never done before, and seems much more alert and into the world.

Thing is, babies learn new skills they've never done before all the time. They'd better! And at least in Liam's case, every few months he seems more alert and aware. An informal survey of one father (that's science for you) shows that this may not be true for ordinary children; he thought they were pretty alert all along. But it sure was with Liam -- and he didn't get any Magic Intelligence Drops. So I think such testimonials are useless. It's like saying that tomatoes kill you, because everybody who eats a tomato dies eventually.

But blanket disbelief isn't the way to go either. Sometimes drugs do work, and sometimes your doctor doesn't know everything. We have already decided against gingko, at least for now, because nobody recommends it for babies his age, and it has a risky side effect. But recently I read about DHA, a fatty acid. Does it help? I don't know. Don't know if the pediatrician will know. It's part of normal brain development, but that doesn't mean consuming more orally will have a positive effect. Internet searches turn up enthusiastic testimonials from vendors, and from people whose children prospered on oral supplements (and may have prospered anyway).

So I suppose it's time for more research. With us so far, it's orthodox medicine (for infantile spasms) 1, alternative 0. But that could change, when the evidence comes in.

Second word

2010-03-15T14:03:00.001-07:00

...and not long after. "Ba" (ball). He takes turns, with us rolling it back and forth, and he gets the activity of hitting it to make it go toward me. He's said "ba" several times associated with this, and never otherwise.

Rockin'.

He's also taking turns banging an inverted laundry basket like a drum. Turn taking, speech therapist says, is an important speech skill, because we alternate talking with listening.

His first word!

2010-03-10T04:11:00.001-08:00

Neh-neh-neh-neh-neh-neh-neh-neh-neh!

Meaning, "Stop wiping my nose! Stop offering me mashed potatoes when I want milk! Stop offering me milk when I want mashed potatoes! I don't like it!"

We saw the developmental pediatrician last week. She says he's tracking at 8-11 months in development (he's between 17 and 18 months). So it's not so bad. I have the non-expert impression that at this age DS children are usually about half as far along as ordinary babies (since they take on average twice as long to learn to walk).

Flying baby

2010-03-02T08:38:00.001-08:00

Milestones, Part Whatever

2010-02-23T18:59:00.001-08:00

It's been a while since I've posted something titled "milestones." He's been slow, ever since last year, when he had the infantile spasms. There was a spurt of development in July when he went of the Prednisone, and then he sat lump-like on the development chart till November at least. And then he began to creep. (Literally and figuratively.)

He's been doing better. Some of it I've reported. He can pull to stand; he can drink from a straw (an accomplishment for any child of 17 months, DS or not!); he can babble. We saw a couple of twin girls the other night, 8 months old. They were almost at his level; not as comfortable standing as he.

But...

Today, he

stepped away from his play table and stood in midair. OK, he didn't stand, he just fell, but he didn't mind falling into my arms; he was willing to risk it. Then he did it with Marisa.

stepped around that play table, around a corner. That's an important step in development: after pulling to stand, being willing to "cruise" (sidle) along the supporting surface.

let go of his support and sat down (boom!) on his butt. Apparently that's the way babies start when they're learning to come out of a standing position. He's done it several times, Marisa said.

opened and closed a stove drawer (someone else's house), fascinated.

climbed up on a "stair" made of sofa cushions onto the sofa, with minimal support. (This was set up; the others were things he chose to do.)

His babbling is more consonant-filled these days.

At this rate, I expect him to be reading simple words by the end of April!

OK, that rate can't continue. But it sure is nice to see him accomplishing more! And as I look at the relevant chapter in our Gross Motor Skills for Down Syndrome Children book, instead of him being stuck between two sections as always before (he can do this one well, he can't do the next at all), he's doing everything in one chapter and part of the next, not well enough, so he's got a lot to learn right now.

And he's got the energy to do it. He's been a very lazy baby! Put a toy five feet away so he'll crawl for it, and he looks at it and cries. Not any more. He says, that toy is mine now!

Our PT assignment for now is to interfere when he wants to stand, or crawl, with his legs wide apart. It probably feels secure, but he needs his feet directly under him to walk, and at some point PT becomes less about learning to do new things than learning to do them right. (So I hear.) He is still stubborn. I push his feet together, he picks one up and tries to put it back down further apart!

God the Father, or just the father?

2010-02-07T12:15:00.001-08:00

You've probably heard before a topic I heard at church last night: that the way you think of God the Father has a lot to do with the way you think of your earthly father. Was your father neglectful? Then, until you learn better, you may think of God as distant. Did he rage? Was he violent? Then you may fear God's wrath and fail to grasp his mercy. Etc.

As I heard this, I watched my baby boy Liam, and wondered what he would say if he were in a conversation about this, years from now.

For one thing, I need to be careful about him hearing me yell. Last night, driving with just him and me, I made a loud noise -- not at him, and he was in the back, but still, he went from being fussy about being in the back by himself into his hah-hah-hah I'm-so-upset-I-can't-wait-to-take-a-breath wail. He didn't used to react much to things outside himself; now he does -- progress, but it means I have to watch out for (for example) sneezing, shouting, or other things that are too loud.

For another, I've already decided, when I go by the living room and he smiles and wants me to come in, I must come in for a moment at least. I don't want him to feel unloved. And I recognize that that's how I felt; I must not pass it on.

And this morning, I did play with him just before leaving, and kissed Marisa and left, and he cried. What's up with that, me not waving and saying "bye-bye"? I thought he'd cry less if he didn't notice. He thought he'd cry less if I said goodbye. He's getting more aware. How could I be so dismissive?

When they were talking last night about this principle (thinking of God the way you thought about your father), I tried not to laugh out loud. Because all I could think was, in 20 years, Liam will be having this conversation, and will say, "It's the strangest thing -- but sometimes I can almost hear God speaking to me. And He's saying, 'Are you one of those poopy babies?'"

You think you're stubborn?

2010-01-31T12:24:00.001-08:00

I'm not. At least, I started out compliant and credulous and utterly malleable, and developed stubborness (as much as I could manage) in an environment of abuse.

Marisa never learned to be stubborn, and may God grant she never has to.

Liam more than makes up for it. We want him to learn to feed himself. (He's got a deadline of March, or whenever #2 gets here. I do not want to be dealing with a newborn and having to put each bite into Liam's mouth.) But his response has been, when we put a spoon in his hand, to push his arm out wide, lock his elbow, turn his face the other way, and scream!

For finger food, he has the same reaction. Pull the hand back, reject the food, object to the whole process.

So Saturday, we took a tip from Miss Donna (the helper who at one meal wouldn't put his cup into his mouth till he touched it -- and now he always reaches for it), and decided to make him eat some of his meal with both finger food in his fingers, and him holding his spoon. I prepared for a weekend battle.

I got one.

...except that(on the spoon issue) it only lasted one day. Now, you put that spoon in his hand and he pulls it into his mouth, and says, do it faster! faster! faster! As you might expect, it's a horrific mess: rice all over the table and floor at lunch; plate thrown on the floor at dinner... well, the speech therapist said he needs to learn to play with his food! We knew it was coming.

But what I wasn't prepared for was it working so quickly! Now we have to get him to use the spoon to pick up the food. He doesn't get that yet -- because we didn't show him.

When we try -- maybe tomorrow -- he'll say, That's offensive! No! What are you doing? Help!

And then, we hope, he'll learn to do that too. Wish us luck.

Babywatching

2010-01-24T13:15:00.001-08:00

...we had a sighting of the red-spotted squealy-baby.

Seriously, he had a fever last week up to some 101F (since subsided), and then this pattern of red spots all over his body. Best guess is that the live virus in the MMR (measles, mumps, rubella) caused it: the Internet tells us some 15% have a fever about 1-2 weeks after, and of those, about a third end up with spots. Not contagious, and nothing to worry about. He doesn't feel bad. He's a little off his feed.

The alternative explanation, our pediatrician's office said, is that he got a virus, and they sometimes get a rash as they recover. Again, no biggie.

But it sure does look weird.

Involved, or not

2010-01-13T00:07:00.001-08:00

My brother-in-law says you can tell which fathers are involved in their infants' lives by referring to a "5-wipe diaper," and seeing who says, "What's that?"

I recently read a blog post on Catholic Dads that showed advice (IMHO) to the uninvolved set. In particular, it said, let your wife make all the decisions about child care; it's her show; babies need nurturing, not discipline; your expertise won't be needed until he's old enough to throw a tantrum and have you "play the heavy."

With all respect to the author, who is trying to comfort a female friend whose husband is perhaps essentially absent from both baby and mother: what a sad, sad view, I thought: that my primary relationship to my son should be as a disciplinarian! that I'm a fifth wheel until it's time to scare or force him into toeing the line! What a starved, barren view of how fathers can relate to children.

I recall a time when I asked my own father, "Why weren't you more involved with me, when I was young?" His reply was, "Well, you seemed wise enough, I didn't think you needed me to tell you what to do."

I take it from this that this was the old way of fathering: the primary, and almost only, thing a father can do, is to give orders.

It would make me kind of useless to someone too young to understand orders. (I'm also possibly too laissez-faire. We have a helper who was telling him, no, you can't have milk unless you're willing to touch the sippy-cup. This is as a prelude to getting him to hold his own cup. We're going to follow her lead -- but I wouldn't have thought of it.)

No way would I limit myself so. I will change, feed, hold, rock, comfort, play with, giggle with, be played on, support, challenge (to do his PT), show off, and protect from overeager admirers who forgot to wash their hands after wiping their noses. (That last one's mostly at church.) I don't think this is remarkable or even unusual, although it may once have been.

I do understand two barriers to this.

One is worry of doing something wrong. I felt like this holding our fragile bundle-of-joy on Day #1. I was over it on Day #2.

Another is having women dismiss you as genetically incapable. But my wife isn't dismissive, and no one else matters.

I recently encountered another, probably unusual, issue: someone who backed me into a corner and put her hands on me uninvited, while I was holding him.* In that case, it would have been better if Marisa'd been holding Liam, so I could defend the family; I can hardly expect Marisa to do that kind of defending!

But usually people go after him, not me (something about the cuteness, I'd suppose), and in those cases I prefer to be holding him, because I can play the heavy with them more than she would: pulling him back, twisting so they can't put touch his hands, which of course go straight into his mouth. (This is no longer so much of an issue, since he's older now and has a stronger immune system.)

So in that case, I'm not sure which is best: traditional, or otherwise.

But my hope for uninvolved fathers is: don't support your wife in being the sole adult in their lives. Instead, support her -- and them -- by make her no longer alone in that role. They need your attention. Give it to them.

*Georgia Vinton, a nurse at the hospital where Liam had his ear-tube surgery. She either thought I needed to be handled, or thought I was cute. Whatever her reasons, it was creepy.

Finding things out by breaking the routine

2010-01-08T11:29:00.001-08:00

Whoo-hoo!!!! Liam's made another milestone. He looked at Marisa eating (on the sofa), and whined and cried to get something. Empathy: the principle of understanding what someone's going through (and wanting it for yourself!).

I think this happened because of a disruption in our routine. We went out for our anniversary Wednesday night at one of those cook-in-front-of-you Japanese places, and came down with food poisoning. It was horrible. He had to eat, of course, but we didn't really feel like being in the same room with food. Marisa braved it through lunch, and a friend came over and fed him supper.

We're better today, but I'm still not eating, so Marisa just baked a knish after feeding Liam (a very fussy supper, for whatever reason), and in this unusual eating situation, he showed us that he knows when we eat, it's like when he eats. Marisa will have to heat up something else: he ate half.

In addition, we see a few other things that seem to be true: when we say "milk" and make the sign, he looks at the cup; when we show him our family picture (which he thinks is great fun), and say "Mommy" or "Poppa" he waves his hand over the appropriate part. I don't know how we make connections, but he seems to have these.

When will he learn?

2010-01-03T16:49:00.001-08:00

When I put him to bed, it tears at me.

He cries; he doesn't want the day to be over. That's not the problem. It's that every night, I sing the goodnight song to him several times, and I take him around the house, in the cradling position, turning out lights, all the while with him staring into my eyes peacefully. He doesn't get that it's bedtime until I'm lowering him into the crib. Then he cries.

Liam's winter weekend

2009-12-19T15:27:00.001-08:00

[caption id="attachment_787" align="aligncenter" width="244" caption="He can pull himself up to standing, sometimes. I made this table from modular shelving, cable ties, and a big river rock so he can't pull it over."][/caption]

[caption id="attachment_788" align="aligncenter" width="300" caption="Stocking up for the coming blizzard. Liam loved the winter-squash curry."][/caption]

[caption id="attachment_796" align="aligncenter" width="300" caption="This is interesting..."][/caption]

[caption id="attachment_797" align="aligncenter" width="300" caption="I'm not sure about this"][/caption]

[caption id="attachment_791" align="aligncenter" width="300" caption="Take me inside!"][/caption]

[caption id="attachment_792" align="aligncenter" width="300" caption="Much better!"][/caption]

OK, I'm disappointed he didn't like the snow. But it was cold, even for Human Hot Water Bottle Liam.

Bloody murder

2009-12-18T14:50:00.001-08:00

The Ferber method seems to mostly be working. Down from 1 hour+ of crying to 30 seconds.

But he really didn't like going to bed tonight. He's still in there wailing.

A friend said she saw Marisa tearing up when Liam was crying about something. She said, "Marisa, you've got to get used to this! It's part of the deal!"

Yes, but doesn't it say a lot about Marisa that she does that?

I'm not crying, but it sure is hard to listen to.

Maybe I'll go shovel some snow outside.

Mr. Mom for 3 whole days

2009-12-17T07:00:00.001-08:00

Once again, I have a tension between seeing how much I can get done while caring for Liam, and just hoping I can survive till Marisa's back from her trip!

It's not gone so bad, so far. I have done minor cleanup, taken him to be weighed, bought a lot of baby food makings, and intend to cook them up this afternoon. But he does need a lot. Specifically, he gets sadder and more complainy if I am not right there with him in physical contact. (But when I am, he's mostly ready to laugh and be delighted.)

We'll see. I don't think I'll get to any major home improvement projects. Except the one that's asleep in his crib right now.

Ferber method

2009-12-10T16:17:00.001-08:00

That is, once he's in that crib, crying won't get him out. (Unless there's actually something wrong, like a wet diaper, or a fever.)

Marisa doesn't like it. She isn't sure about it. (It makes her feel horrible to hear him cry and not fix it. Not that anything stops him yelling this week when he's sleepy. Who knew sleep was such an offensive concept?) But it would be a shame if we both died of exhaustion because he won't go to bed. Then who would take care of him?

Reassurance

2009-12-07T01:48:00.001-08:00

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 started reassuring 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 --

[snarkiness]Do I have "soothe me" tattooed on my face?[/snarkiness]

But of course I don't -- nor do I send out vibes. Of that sort, anyway. Quite the contrary.

But since I just did the closing snarkiness tag, I'll be kind again, 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?" (Just innocent delight.)

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.

New sleep schedule

2009-12-02T21:30:00.001-08:00

At 3 a.m., these days, it's playtime. He will yell and yell until he gets us to play with him (and sometimes after, if we didn't please him more quickly). Which is why I'm blogging at 5:30 a.m.

He's so much more alert these days! Especially in the wee hours.

#2, sonogram

2009-11-17T08:35:00.001-08:00

"No abnormalities detected." WOOOOOHOOOOO!!!!!

And regarding the other question...

#2

2009-11-15T12:52:00.001-08:00

It's an open secret, so let's make it not secret at all: baby #2 is on the way.

We had no idea it would happen so quickly!

Unhappy images

We were getting worried during the last month and the start of this one. We were in the "you should feel the baby kick" period, getting toward the end -- but that period is for new mothers. Once she's felt it before, she should notice it more quickly. Looking around on the Internet, and talking to others, everybody's feeling baby kick early. But the doc said, no, it's not a problem: come in if you want, but you don't need to.

(Then, weekend before last, Marisa said she felt something like an irregular heartbeat that wasn't her pulse. This weekend, a definite kick.)

But before that happened . . . you must know what I was thinking. What condition do I know in infants that causes low muscle tone?

The risk is under 1% of a recurrence. But I couldn't stop obsessing on it. That risk is assessed before you have a baby that's not kicking perceptibly.

So 99% wasn't good enough for me to feel peaceful. But after days of wavering from obsession to sadness to not thinking about it, I got this: God wants me to trust Him 100%, not the numbers 99% -- that He will grant me exceedingly abundantly above anything I could ask or think; and I can be happy with what He gives.

This worry is all in my mind. But as it happens, someone made a suggestion to me last Tuesday night: consult your dreams. He's sort of New Agey and I'm not, but I said to God, "If you want to tell me something through my dreams, I'll listen!"

Happier images

That night I had two dreams.

In the first, it was about 2 years in the future, and Liam and a perfectly healthy baby #2 were crawling all over me and saying, "Pappa! Pappa!"

In the second, baby #2 was just born, and was a perfectly formed, perfectly healthy little girl with big eyes, and Marisa had the name for her "Grace Ramsey." (I looked up "Grace Ramsey" on Google the next day to see if it was somebody I should have heard of; no.) I tried to think of other middle names that were a little less unfeminine.

What beautiful images to have in my mind, replacing the scary ones. Thanks, God.

...and a big week

The big sonogram is Tuesday. Pray for us, and for Miss or Master Ramsey.

And for Liam's tubes-in-the-ears surgery the day after that.

Tubes in the ears

2009-11-11T13:10:00.001-08:00

Marisa took Liam to the EENT today, and this is the word: "Bilateral myringotomy with tube placement." Or as they say, tubes in the ears. It's a tube through the eardrum (I hate the sound of that, but they say it will seal later -- 95% likely) into the middle ear. It doesn't open the Eustachian tubes, but is a way around the problem.

It almost seems to be in style these days. I keep hearing about it, for children in general. There are some places, the doc said, where they routinely put tubes in the ears of DS babies. That's too much.

Anyway, I was happy to hear they found the fluid in the left ear, and intend to fix it, because I'm hopeful that this will be the fix for his hearing issue. (And for his speech delay.) The right ear, they didn't find anything, and he failed in both ears. After he's recovered, he gets another hearing test.

Meanwhile, he continues to be mostly playful and happy. But Marisa's talking to her mother right now on the phone, saying: he got sick around Oct 1. Then she got sick. Then me. Then him again. Then she twisted her ankle. Then she spilled hot water on her foot. It's about time for things to go right!

He failed the hearing test

2009-11-01T13:20:00.001-08:00

When he was a newborn, he failed in one ear repeatedly, then passed. I thought it was the test. It seems very finicky. Can't do it now; he's snoring. (Yes, he's supposed to be asleep when they do it. They measured brain activity.) He's breathing rough. Something else.

This time, he failed, and they also did a "tympanogram," which is apparently what it sounds like. It seemed like no sound was getting through one eardrum. This suggests fluid. That's better than nerve damage!

And I keep wondering how I could overlook things. I speak to him and he doesn't turn to me. But I knew he could hear -- despite that evidence -- because he could earlier. But of course such things can change! Especially when you've had congestion for a month. (I think the failure to hear started earlier.)

He has a doctor's appointment Wednesday to see if they can find fluid. If so... I think this is easily fixed.

No wonder he's delayed on speech-related things. Although there's surely more to it than that. Damn it -- why didn't I wonder about this?

In other news, check out these pictures:

He's able to raise up on all fours now. Yes!

Another new behavior: going to the wastebasket, turning it over, and getting all those political flyers out to play with. I don't know how most parents feel about this sort of thing, but I call it "purposeful" and "capable," and I'm delighted.

He loves to stick his tongue out -- another new trick.

I am sure that sometimes he does this in imitation -- which makes another milestone! Other times if he sees your tongue he just giggles. Like this!

Trading off

2009-10-25T12:39:00.001-07:00

About three weeks ago, Liam had a fever. Congestion would wake him up. We weren't worried, but it's always sad to have a sick baby.

Cresting one week later was Marisa's version of the same thing. She was really miserable. I was Mr. Mom, or it would've been hell for her.

And in one more week I was in bed, thinking, if Liam had it this bad, he'd have been crying all night long. And I'm the only one in the house allowed to take things like decongestants! At least we weren't sick at the same time, and could trade off.

Early this morning Marisa woke me up by crying. "I just can't take it any more," she sobbed. Couldn't take what? Another wee-hours hour of nursing a baby that would cry the moment she put him down. Ordinarily I'd have gotten up and taken him downstairs were he could holler as much as he wanted and she couldn't hear. I couldn't make myself. We lay in bed while he yelled from his crib, until she was calmer. Then she got up again.

I felt better today, but still not good, so when we found that the book I wanted on speech therapy for DS children was at our library, she agreed to go get it. In 3 minutes I had a call. "Will," she said, "could you come outside right now?"

She didn't sound alarmed, but I bounded up the stairs and out the front. Why are you sitting on the road? I didn't ask.

Because she'd twisted her ankle stepping off the curb.

So I helped her in and got her an ice pack, Tylenol, and a cane. The pain wasn't tremendous, apparently.

"It's a good thing you were feeling a little better today," she said.

"If I didn't," I said, "we really would be pitiful."

"Honey," she said, "we are pitiful!"

Three to six months?

2009-10-19T14:37:00.001-07:00

Marisa took Liam for his initial speech therapy visit today. (We'd been trying to get an appointment for weeks. But when we got one, it was for almost immediately.) They said he's tracking at three to six months old in his language-related abilities, with a few behaviors from up to twelve months.

Three to six?

Liam doesn't do anything that is clearly communicative. He does vocalize to express emotion, but it's not clear it's to say "I want!" (although over the past five days this may have changed*). He has over the past week started leaning toward someone he wants to be with, but I don't think he's doing it to communicate yet, but is instead trying to make it happen with his own body. (The physical therapist, but not the speech therapist, should be pleased.)

He does not understand "no," "mamma" or "poppa," or any other words. He does not point for something he wants; he just tries to get it.

I'm worried again. Not that it will do any good. His next appointment is, well, who knows. They say they have to do paperwork before deciding. Meanwhile, we have reading to do.

Mr. Mom

2009-10-13T10:02:00.001-07:00

Marisa was sick this weekend (and much of the previous week, but it got worse). She gets a cold and it goes into her chest.

So while she lay in bed and groaned, I took care of baby boy.

It wasn't like last time. He was pretty good the whole time, so I was able to do quite a bit with minimal wear and tear on the nerves.

We spent time sitting up at the play piano, and the real one. He's gotten quite good at stability.

...and some time standing up at this table. He caught himself as he lost balance, which is new.

So I guess Marisa is right: he's not doing much in the way of new behaviors, but he is slowly getting better at the ones he already does.

And I was pretty good at feeding the baby, cooking each meal and washing the dishes and cleaning the kitchen, changing the baby, treating the butt rash, washing the diapers and the towels that got wet on, and kissing the baby's cheek to make him laugh.

This post would be way cooler with pictures, especially of him laughing. He's been a very happy baby recently. Today he was able to sit for a while without bracing himself -- and brace himself when he needed, sometimes even recovering when he fell too far to the side. Poor guy. Short arms.

But there'll be no pictures on this, because after Liam had it and got over it, and Marisa had it and mostly got over it . . . now I have it. So I'll be watching brainless video and eating comfort food tonight. Marisa said the rule was clear: I was not allowed to get sick! So I'll try to keep it to a minimum. Wish me luck.

"He's gettin' so big!"

2009-10-04T14:02:00.001-07:00

We hear it all the time. I try to interpet this as "Time flies," because if you don't live with him, a year goes by and you think it's a few months.

But he's not getting big. He gained 4 ounces over the past month. And, of course, being a Down's baby, he is shorter and smaller and presumably always will be. He's less than 5th percentile in weight, height, and head circumference as compared to normal babies. Don't tell me he's big.

Nobody's concerned but me. He's been losing weight since June, which is a very good thing, because he was a porker (that Prednisone lump immediately below) and now he's back to looking fairly normal, as in the pic below that (normal except the 'do, which is so great I'd put mousse in his hair to get it back if it lay down!).

Doc says a month w/o weight gain is OK. She said that after a month of no significant gain. Is two months OK?

As for now... he eats more than Marisa does. He's active, but he's no non-stop wiggle machine. Where the heck does he put it? Maybe it just goes right through. If you know what I mean.

Addendum: Marisa had him weighed Friday; he'd gained, oh, half a pound. I thought this was great news, but on reflection I don't know what this means, because when you eat as much as he does at one sitting, it may just have meant he'd just had lunch! But it was great to hear. Anyway, he's got a fever this weekend -- not too high, but it's put him off his feed a little. So once that's done, we'll continue to monitor.

Liam's drinking problem

2009-09-26T15:58:00.001-07:00

During Liam's Prednisone days in June, we stopped giving him a bottle, because he was already eating enough to make him look like Winston Churchill. He got nursing, and solid food.

Now, he's forgotten bottles. Bottles, sippy cups* (conventional and with the big rubbery nipples), travel mugs . . . they're all instruments of torture as far has he's concerned. It's impossible to swallow while screaming -- this much I'm sure of.

Here's what we've tried so far:

giving it to him when he's hungry (screams result) and when he's not (he doesn't scream, but he doesn't suck, either)

letting him play with it as a toy. He does put it in his mouth like he would any other toy, but he doesn't suck

changing the action on the nipple, to make it give milk easily, or with more stinginess

putting syrup on the nipple. He thought the taste was interesting, but he didn't suck

putting apple juice instead of milk; breast milk instead of cow's milk; sweetening the milk

putting oatmeal powder in the milk, so it's thicker and may be easier not to choke on

a little tube from a syringe with milk -- the way we fed him when he was newborn

We haven't tried denying him nursing until he accepts the bottle, but babies aren't always rational; he might get dehydrated before he'd take the sippy cup.

The reason it's an issue is twofold: he's not getting enough from Marisa (by pediatrician's guidelines, at least); and she needs him to get less -- his lower teeth have erupted, and he bites.

Does anybody know how to get him to drink?

*DS babies aren't supposed to have sippy cups; their nipples push the mouth in a way that could inhibit learning speech. But our pediatricians says, it wouldn't hurt to have him on it for a short time, just to get him used to drinking from a cup at all; then shift to a straw or a travel cup.

Update: tonight Marisa tried giving him milk from a straw (dripping it into his mouth, her finger on the top) -- and he took it. And fussed when he couldn't get more. I'm not sure how to translate this into something practical, but -- how weird!

Paper

2009-09-22T13:25:00.001-07:00

Liam's birthday, as you might imagine, had presents, and those presents often came in bags with bright colored paper.

Forget the presents: Liam wanted the paper. It was bright, and easy to wave, and made lots of noise. He rolled all over the floor waving it and ripping it and leaving a trail of blue strands.

When I picked him up, he kept on waving it. His expression said, "Poppa, help! I can't stop!"

And he couldn't.

We've let him play with paper a lot since. (For one thing, it's safer than cords, which he'd go for in a heartbeat if we let him.)

On the other hand, we have one toy that was so great it even beat out paper.

Seriously, this was a smart idea: a ball that's all holes, so it's almost hard not to grab it if you touch it. It's called an "Oball." Our PT says she gives one to every 1-year-old she knows, whether they need PT or not.

Thus we head off the ugly prospect of an intervention: "Liam, this is how your paper use has affected my life: look at the picture on the right.

"And if you don't ease up on the paper, I'm going to post a video on YouTube so everyone can see what it's like when you get happy and excited."

1 year ago today, something big happened

2009-09-15T03:05:00.001-07:00

And here's the result.

1000 words

2009-09-08T03:19:00.001-07:00

Art critic

2009-09-07T01:54:00.001-07:00

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. (Like in the YouTube video here, taken at his happiest time of the day: getting up). He was excited.

(The pictures above 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.

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

Weight loss, without that one simple rule

2009-09-02T06:30:00.001-07:00

I was alarmed last week. Last Sunday someone asked how much Liam weighed, and I weighed him on the bathroom scale (me with him, me without, find the difference). It looked like he hadn't gained weight in a long time, but you know how accurate those bathroom scales.

I wanted a more accurate weight, and thought Marisa would get that at "Best Start" (that's our local New Age breastfeed-or-die baby center), but Wednesday I took him to the Y, where I could get a somewhat accurate reading. He'd gained no weight since early May (10 days into Prednisone).

Before, and after, leaving Prednisone behind

We took him to the doctor, and she said she was cautiously not worried, provided he gains weight over the next week. Understand: he had a lot of Prednisone fat on him in between, so he was supposed to lose an appreciable amount. But at the doc's he was slightly below the growth curve he'd been on (5th percentile of babies general, about halfway for Down's babies).

So we're fattening him up. We're slow to change, and he just got meat today (not counting what we fed him when we were out). But we piled on the carbs.

The result is a 5-ounce weight gain since last Thursday. (Today's Wednesday.) This is excellent; normal, as Marisa recalls, is 4-8 ounces per week. Maybe the meat will crank it up further. [Later edit: no, I heard that wrong. It's about a pound a month, so this is a little above normal. But he's little.]

Meanwhile, here's what else he's been doing:

his first crawl. It's a commando crawl, and he just does one half-move, but it's a crawl. (We got so sick of the books on how to get a baby to do some motion -- "tempt him with his favorite toy." Yeesh. What if he doesn't give a rip about toys? But now he likes them. If they're noisy!)

spontaneous raising of his upper body onto straight arms -- like a half push-up. Both of these are good landmarks.

telling us in no uncertain terms, "I will not take a sippy cup. I will not take a bottle. I know what you're trying to pull! That's not a booby!"

grinning and pulling me close by the short hairs. Hard. It hurts, but it's so cute I endure it.

Smile week

2009-08-24T02:58:00.001-07:00

I warned you that good times could make boring reading . . . but maybe not boring pictures?

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!

Milestones (Part V); and comparisons

2009-08-16T18:00:00.001-07:00

Now he's

learned how to control an electronic toy, that is, that if you push a button you get music. He's had it for months and never showed any interest in doing anything to it. But he spent 30 minutes poking it -- he gets it! We could have danced, even without the silly electronic music

pulled himself up to sit with my hands. OK, I initiate this and make sure he doesn't let go, but he is doing some pulling

But he keeps doing the same thing with his hands: just holding them out and waving them; or picking something up and waving it. It is delightful to watch him splashing. But what's next?

And tonight we went to another baby's birthday party. He's one month older than Liam. He's walking. Liam seemed more on par with a six-month-old.

There were babies all over. Every single one of them healthy, and I just wallowed in sadness for about half an hour before I could shake it off and do something else.

Milestones (Part IV)

2009-08-09T13:38:00.001-07:00

One thing I haven't been doing is recording Liam's new developments. I may wish later I had -- but, fortunately, they've been coming fast! Over the past 7 weeks he has

started raising his feet when he's on his back

grabbed things intentionally (that weren't dangling over him from his "gym")

decided that being bounced is funny; so's holding my foot when I wiggle my toes

learned the "b" and "d" sounds. He uses them to explain to the world how awful the world is. It sounds like it's just so terrible he's stumbling over the words to get it out

got this new behavior of shaking his arms and legs in a sort of caper, when he's on his back. It may mean excitement; I'm not sure. I am sure it's good exercise

learned to blow raspberries

learned to smack his mouth open and closed, for the noise.

[caption id="attachment_633" align="alignright" width="187" caption="No more food for me! Got it?"][/caption]

No, it's not a signal for food; he just does it

learned to refuse food. (Back when the Prednisone Monster was kicking his butt, that would have been unthinkable, but...) He does this by keeping his mouth firmly closed.

been calmed merely by looking at us, rather than only when we're touching him. That speaks to me of greater awareness

made some forward progress, without help, in his attempt to crawl

stared in wonder at his right hand. (OK, maybe he did that before. But it's weird)

taken an interest in this stupid-looking toy: you push one plastic thing down and another arises. He did it himself, too, several times, although he didn't look at it when he did. What does that mean? But it's the first toy he's done anything with that did anything back

passed something from one hand to another. I haven't seen it repeated yet, but that's just today

I'm so very impatient for what the PT says are our next big goals: sitting, crawling. And whatever his speech therapist would say is next if he had a speech therapist.

And I was feeling very blue over it today. But Marisa pointed out that our Gross Motor Skills for DS book says rolling back-to-front is around 7 months for DS, and sitting is 11 months; Liam did his first rolling back to front right around 7 months, then shut down 2 1/2 months for his infantile spasms. So, except for that delay, he may be around average for DS children. So I'm trying to take comfort from that.

Progress, such as it is

2009-08-03T04:24:00.001-07:00

How I feel about Liam's progress depends on one thing.

If I notice that he's doing about two new things a week (last week it was babbling -- "a da da da da ba ba," which translates as "I'm being treated so horribly I just can't express it all!"; and blowing raspberries, which he just does because it's interesting), then I'm happy.

When I notice the same things are being done by somebody's 5- or 6-month-old who doesn't have Down syndrome, then I'm blue.We can get him to lean on his hands sometimes. I made this little table for him to sit at, from a decorative shelf we got at a yard sale (for that purpose.) If not supported on the back, he flops over backwards.

We also have this table for him to stand at. He loves standing up; sitting, not so much.

We also have the job of putting our hands behind his feet when he gets the urge to crawl, to give him something to push against. I'm not going to do this any more. He always cries. It's supposed to be fun, or he won't do it.

I'm considering building him a little baby-skateboard to go under him, to get him used to the all-fours position, and encourage him. The PT wanted us to do this with our hands, but I'm just not getting how to do it effectively.

...so it's maddening. He does things on his own schedule. Given that that schedule was interrupted by 2 1/2 months of infantile spasms and Prednisone torture, I want him to do some fast progress now. But he has to want to. It's sort of like teaching college!

I'm no longer going to (necessarily) try to do a blog post each week. My hope is that there won't be much to put on here but glowing reports of progress and cute baby pictures. I know that agonizing and struggle make a much more interesting story, so I can hope to have a life too dull to write about, at least regularly. We shall see. Thanks for your attention, and I'll be posting again soon -- just not necessarily on Sundays.

Domesticated dad, or wild-boy son?

2009-07-26T18:15:00.001-07:00

Now that I'm a father of an infant, I'm domesticated. That means that instead of thinking (at the beach), "Cool, let's go bodysurfing," I think, "Is the water too rough for a baby? Might be better if it looked like a big pond. We absolutely covered him with sunscreen, didn't we? Do we have a hat for him?" And have awful mental pictures of losing him in the water, that would have led me to keep him high and dry if there had been any significant waves.

But it paid off. As the picture shows, he was fascinated with splashing his hand in the water. If I hadn't held that float he'd have flipped over forward.

And when there were waves -- small, by adult standards -- he didn't cry when they slapped into him and got salty water on his face; he was still fascinated. Maybe that means he will be "Daddy's Tough Guy," as the onesie he wears says. I tended to think it's ironic, because how can someone who cries because his food isn't lukewarm be considered tough; whose primary concern is his own comfort?

I'll tell the truth: one of the powerful reasons I wanted a boy to begin with is to teach him to be, if not a tough guy, at least a guy.

And, yes, I know you have to start more basic -- like Liam is, with rolling over and grabbing things and watching his hands.

But I do look forward to those days when he'll say, "Let's go to the woods!" or "Let's swim!"; or, let's go do things with tools or ride in the Jeep or something. And I'm hopeful that Down syndrome won't affect this; that he'll be ready to be all boy rather than a hothouse flower. Maybe that'll serve him in good stead, more than anything else we can do besides loving him: to be happy that he wants to do and risk, so that he'll be capable as an adult of being adult. Time will tell, but his interest in facing the waves for the fascinating things they did rather than crying because they put salt water in his face . . . that's in the right direction!

Liam discovers the difference in his face and mine

2009-07-12T13:38:00.001-07:00

(And, no, I don't think he was really doing a comparison. He was exploring my face and going back to his reflexive or comforting behavior of rubbing his own.)

...and he's learned to laugh again!

No blog entry next week. See you the week after...

The sleep gurus

2009-07-05T16:12:00.001-07:00

When Liam was a Prednisone baby, he was cranky 24/7, ravenously hungry, and woke up every 2-3 hours to eat, as if he were a newborn.

Now that he's going off it (yes!), he still may want a snack at night, but to a great degree it seemed to be that he just wasn't sleepy. The pediatrician said, "You tell him the kitchen is closed at night, and it's time for sleep." Yeah, right, we thought.

There seem to be two main ways of thinking about how to get a saucer-eyed baby to close those lids at the right time:

William Sears's method, "attachment parenting." It could be caricatured as "let the baby get what he wants all the time including at 3 a.m., until both parents die from exhaustion." But until I read his book I won't know if that's just a caricature. We're going to the library tomorrow. Still, his web site has a writeup, and it doesn't seem at all clear how to get the baby to sleep. Maybe that's because his method requires a lot of studying one's baby, finding what he likes and needs. When I stayed up and studied Liam, I found that he needed to be awake midnight to 5 a.m.

Richard Ferber's method is to keep that baby in the crib (once you're sure he's not hungry, wet, or otherwise has a need beyond needing to stay up). You go in every once in a while to reassure him you didn't move in the middle of the night without telling him, at progressively longer intervals.

We may not be knowledgeable enough for Sears's method yet, but we've been trying Ferber's over the past week, and he's gone from 5 hours up in the middle of the night at the start to (last night) only one wakeup time, to have some booby, and then back to bed without complaint. Some of that may be the reduction in Prednisone.

But I'm up tonight, and Liam's in his crib complaining. Marisa hasn't the stomach for it, and is leaving being a mean old poppa to me, which to my mind is better than her being stressed out and miserable. And it's not easy: even while writing this paragraph, he let out a wail that made me go in to tell him we still love him. And that he's staying in that crib.

PT

2009-06-29T07:50:00.001-07:00

Physical therapy is da bomb.

(And isn't it a delight to talk about something other than terrifying neurological disorders!)

Liam's current assignment, whether he knows it or not, is to sit. Here are some of the things we do with him to help him get strong enough.

Tummy time. Every parent of a Down syndrome child must know how important this is. It builds up the neck muscles so he can hold his head up when he sits. Also, the physical therapist (PT) is trying to get not just his elbows but his hands under his shoulders, so he can get strength pushing up that way. It's like pushups.

Sometimes he complains, but he often complains less if his tummy time is on someone. (He's become much more social, breaking into tears if you leave the room, if he's not distracted.)

Practice sitting with support. We could have gotten this from Gross Motor Skills for Children with Down Syndrome, which we're also looking through. Problem is that like most books, it often suggests you tempt the child with a favorite toy. Liam couldn't care less. He'll play with a burpie cloth if you give it to him, but he's sure as hell not going after it.

...and it's paying off. In church Sunday I held him around the waist (you start holding him under the armpits, but as he gets better at control, the help can go lower until it finally disappears), and if I leaned him back 45° he could pull himself back up straight, and he did, several times.

To make him turn his head the right way (which is straight forward), we're supposed to position directly ahead of him something he wants to look at -- usually us, although he's gotten so he'll track things making interesting noises pretty well (our friend Meg kept him engrossed for half an hour Saturday jingling her keys)

Playing with toes. He has to learn, the PT says, so he'll start working those abdominal muscles -- it's like doing sit-up crunches, in preparation for actually sitting up. The bangle on his leg is in hopes he'll find it interesting. So far, he couldn't care less.

Who knew that playing with your feet was a developmental skill?

Should the rest of us be doing this?

In addition to working on sitting up, Liam has done two more things:

Grabbing things. This started oh, about a week ago, when the Prednisone monster started easing up on him. Mostly he likes cloth, because it's easy to grab. He also waves his right hand up and down, playing with the cloth. Sometimes he goes for other things:

and he's kneaded and combed my beard very well.

Rolling over. We still don't know how the PT tricked him into rolling back to front -- but we were there; it really was all him.

Word

2009-06-22T10:54:00.001-07:00

Doc: "No evidence of hypsarrhythmia."

We are happy. So's Liam, at those moments when he is not having cravings. No points for guessing what he craves!

Scary

2009-06-19T03:45:00.001-07:00

We saw another *waking* jerk yesterday. Although it didn't match his earlier infantile spasms, it does match the general description: head jerk down, arms in instead of out like before. However, it wasn't shortly after waking, and it didn't come in sequence with others, and it looks just like the going-to-sleep spasms two docs have told us not to worry about.

So I don't know. I left a message with the neurologist's office.

Meanwhile -- I was totally fried all of yesterday, because the night before, Marisa came to bed saying she couldn't take it any more, almost crying, so I took the 3 am to 6:50 am shift, during which time he slept a total of 10 minutes.

I posted that mostly because I think the picture is funny. We slept last night. I feel human again. And I don't care about feeling human or not compared to whether that Thing yesterday was something to worry over.

Sleep, where art thou?

2009-06-17T19:29:00.001-07:00

(Say a prayer for Liam right now, OK? Tomorrow we take him for an EEG. We really want a normal one. Failing that, an abnormal one that is normal enough!)

I'm up with Liam because Marisa was on the verge of tears. He won't sleep.

It may still be Prednisone, or it may be that his sleep schedule is thrown off. But he sleeps when he wants to. He can't be induced to by the nursing he constantly wants, or by it being dark, or by quiet. He may drop off, but you can't put him down if he does.

So I'm not even trying. He's in his play area, and he's complaining, and he'll get to do that for a while. No herding cats for me.

We miss each other. (Marisa and me.) Until he stopped sleeping through the night, I never felt like this, not even when he was newborn and had to eat every 2 1/2 hours.

Smiles

2009-06-15T18:45:00.001-07:00

He isn't just smiling now: he's smiling without being touched or tickled, just because Mommy is laughing with him. It's making us giddy with delight!

But, also, there's a reason I'm posting this at 2:17 am. He hasn't gotten back into sleeping. After hearing him talk about his experience of nursing (and kick, too), I finally gave up on being in bed. The past couple of nights Marisa's taken care of his midnight cravings, and I was going to relieve her tonight, but I don't, ah, have what it takes. So they get the bed -- Marisa actually can sleep through this, when she's sufficiently exhausted -- and I'm curling up somewhere where nobody kicks me and complains that there's not enough milk!

Tomorrow, tomorrow, I love you, tomorrow, you're only a few hours away and we're going to be the walking dead when you get here!

Breaking news

2009-06-14T09:30:00.001-07:00

...as of one minute ago, we got two bona fide smiles. The first ones in about two months!!!

Non-support, and support

2009-06-12T18:31:00.001-07:00

I had an angry post written, proving in detail how wrong-headed some of the professionals involved with us are.

Then I just did something really boneheaded with a home construction project (no, I won't say what, not on Internet), and it made me a little more tolerant.

I'll still say some things that have been not useful; and that have been.

Early Intervention. Our main Early Intervention person has never answered a question I put to her about Liam.

I ask, "So what are you doing with him, right now?"

She says, "I'm leaning him over." Well, yes.

I say, "Sure, but why? Would it be a good thing for us to do later?"

She says, "It could be."

I say, "What I'm trying to find out is if you're doing it just to test him now, or whether it would be therapeutic for us to do with him later."

She says, "Sure! Why not?"

At first, I thought it was a cultural thing: I'm an engineer and want good-enough answers; someone in education thinks differently. Then I thought about what people in education -- teachers -- are all about: providing information. And I couldn't squeeze a drop out of this one. That's not what teachers are all about!

Neurologist.

Fair's fair: the treatment worked, and I believe it was done in the right order. But that office lost half the messages we left. The doc told us to call, report, and get instructions. Their office uses voice mail and states on its machine that they do not answer calls from patients. You can leave a message ("please do not leave multiple messages" -- so it isn't just us). When we tried to find out what we should do if we did not get a call back, the doctor was apologetic, but would not answer the question (didn't understand it?), and became defensive when I insisted on an answer.

And everyone I talk to says, "You go, Will. You've got to push these people. If the two of you don't advocate for Liam, who will?" True. But shouldn't they be on our side? It's like we have to trick or shame them into telling us what to do for him.

Now for the happier topic: support.

Early Intervention. The lady in charge of paperwork seems to know her stuff, and she's come to different appointments (including physical therapy) with us, and... she seems like a real advocate. We don't know what will happen in July: her agency loses the contract from the government, but no other agency is available to take it (!), so -- who knows?

Neurologist. Although initially we were able to get an appointment at UVA for Liam in late October (at which point the damage would certainly have been severe), somebody else pulled in a favor for us (thank you, Dr. Brennan!) and we got in two weeks ago.

This guy called us two weeks ago to tell us how to ramp down the Prednisone. He saw us on his lunch break.

We haven't called him yet, and I don't want to, because I don't want to be disillusioned! But we have a number that goes to his staff (of two people). It sounds like we'll get what we need.

Pediatrician. She can't always cut through the difficulties specialists provide, but she tries, and it often works. She thinks about what's the right thing to do. (When he was newborn and jaundiced, she said, "We might give him a light blanket later" -- then came back in 10 minutes and said, "If we wait a day, we'll just be waiting a day and doing it anyway. I'll prescribe one now.")

When we first noticed Liam's seizures, we called her practice and got one of her colleagues. I described what was happening to him.

"I've never heard of symptoms like that," he said flatly.

"And? What should we do? Should we bring him in?"

"I suppose you could," he said. Which was undoubtedly true.

"Should we?"

"I don't see how anybody will be able to tell what's happening unless he does a seizure during the examination."

We took Liam in the next morning, and our pediatrician looked him over. She'd never heard of symptoms like that either, but she called and got us an EEG that afternoon. When she doesn't know something, she finds out.

I think the moral of all this is clear: if it feels like something isn't right, it isn't, and we should look elsewhere. That's what people on the DS forum and the Infant Spasms forum kept telling us!

More on non-professional support -- which has been a great source of peace of mind -- in a later post.

Community support

2009-06-12T18:28:00.001-07:00

The local DS community.

...has not been involved with us much (they're small enough that sometimes they go dormant for a year or two it seems), but Saturday we went to a picnic with them, and it was great to see these happy families with one DS child each. (Great that they were happy, and great that the younger siblings didn't have DS. One mother whose second (of 4) has DS said, "It's like the lottery.")

Ages ranged from Liam to a 38-year-old man who was hard to converse with. His state was a little disturbing, but he had other things go wrong with him beyond DS.

There was also a winsome 13-year-old girl -- no, she was in her early 20's; DS people often look quite young -- a boy looking around 10 who was fascinated with sticks; an apparent 8-year-old who had to be convinced that much as she wanted to play with Liam, there were limits.

Family.

When we started with Liam, and read books, they all told us how to educate, or at least avoid, family members who didn't get it and would ignore or mistreat Liam because of his Down syndrome. Good thing to have in books, but nobody on either side has had anything but love for Liam.

Each other.

He's coming back

2009-06-08T16:02:00.001-07:00

Although he's still mostly a cranky old hog...

...he spent part of this evening playing with a bib, that is, grabbing it, rather than wishing it would get out of his way so he can go back to clasped hands. He'd pick it up and pull on it. A new behavior.

...for several days, he's been crying if you put him down; which means he notices, and anticipates. We think he may be developing crocodile tears: crying for effect, then giving up if it doesn't work.

...and Marisa said he gave her a half-smile today, like he did before he learned to smile, when he was happy.

We're beginning to see him peek at us from around the Prednisone monster. Without the seizure monster shutting him down.

New consult, good news

2009-06-03T09:43:00.001-07:00

We just got back from the consult with a new doctor.

The infant spasms are, for now, over. Hooray!

This doctor told us a lot more. He says the issue is not the spasms but the hypsarrythmia that causes them; the EEG shows this is way down. It's not totally normal, but still wonderful news.

...and the new spasms he's showing? If you're prone to one kind of spasm, you might later develop another. But the jerks he has when he's drifting off aren't indicative of brain-damaging electrical activity. Liam should avoid driving or operating heavy machinery for the next six months.

So the plan for now is to start tapering him off Prednisone soon, and watch: if they come back, he'll have to go back on it. But (we know this from our earlier online investigation) they often don't.

He'll also have an EEG next week and an MRI sometime soon.

Liam's eating habits: a visual guide

2009-06-01T07:39:00.001-07:00

[caption id="attachment_546" align="aligncenter" width="300" caption="How much Liam tells the world we let him eat in a single day"][/caption]

[caption id="attachment_547" align="aligncenter" width="300" caption="How much Liam actually gets three times a day, not counting nursing"][/caption]

[caption id="attachment_548" align="aligncenter" width="300" caption="How much Liam would eat in a single meal if we let him"][/caption]

He's driving me insane

2009-05-31T18:37:00.001-07:00

The seizures are way down and have been for a while: from some 60 per day ("classic" infant spasm) to a few, not clustered, and while he's eating or drifting off. Doc thinks these are nothing to fear. We get an EEG Tuesday to see.

Another nice thing: a couple of days ago he became more alert -- started grabbing dangly toys again like he did months ago; wiggling to the point of going from flat-on-the-back to on the side; seemed to be much more aware of us. He fussed when I was in the room trying to calm him, but cried outright when I left. He cried when Marisa took the empty bowl away from his high chair, thus showing he knows what it meant: dinner is over.

So we're happy overall. But. The drug (Prednisone) makes him hungry 24/7, and he complains most of his waking hours. He used to sleep through the night, but now he wakes up starving. He'd eat till he exploded if he could.

I'll hear, through a haze of sleep, Marisa softly saying to him, "Please go to sleep..." and it breaks my heart. So I get up, take him downstairs where she won't hear him crying, and try to calm him. He says, "You know how to calm me. Food. Now! And none of that diluted formula, either. I know when I'm being conned!"

I'm a little under the weather today (sore throat), and Marisa took not just most but almost all of baby-duty last night while I slept. He was up from 12:30-4:30. Wanting to nurse. Lordy. We're wiped out. No prospect of sleep tonight either, for at least one of us.

Stereotyping

2009-05-25T04:15:00.001-07:00

Let me ramble a little about stereotyping.

I often hear that we must not make assumptions -- a peculiar assumption, because we can't function without making assumptions. We mustn't stereotype -- which is also peculiar, because everyone does it, and can't function without it; it's simply a matter of being conscious of it, or pretending one never does.

(From a writing class I took: consider this statement. "Fred's taking Sue to the dance. [Wink] You know why he's taking her!" So why's he taking her? She's easy. It could be something else -- but if you couldn't leap to the most probable conclusion, every conversation with you would take a lot of explanations!

"Sue's going with Fred to the dance. [Wink] You know why she's going with him!" Why? This is tougher now. But 50 years ago, it would have been a nice car or a fat wallet.)

When (some) people see me, a man, they assume that I am not that into infant care, and therefore probably suck at it, because the men they have known in the past aren't. And part of it's even true of me: before Liam I had in my life changed one diaper, ever. I had no interest in babies. And I felt like Liam was a china doll the first day or two, and picked him up with reluctance.

It's reasonable to assume that men are inept at this kind of thing, because many are, and when a baby shows up and the adults crowd around saying "Aww!" the crowd will likely be overwhelmingly female.

My conclusion: stereotyping works. But you have to be aware of it, so you can discard it when it doesn't fit. Our society's revulsion at stereotyping does make us realize how awful it can be, and that's good, but it also leads people to imagine that if it's that bad they would never do it, so they can't reverse it when they do. And of course everyone does.

Which leads me to an issue that's more serious than whether someone indulgently tells me how much I must suck at taking care of a baby: how people will perceive Liam.

When people meet Liam in the future, they will immediately assume he's not superintelligent, because of his Down's features. This is not evil; it helps them understand how to relate to him. (I hope that if he is of near-average intelligence, they'll be flexible enough to revise their assumptions.) When people meet Liam, now, for that matter, they assume that he won't walk and talk and say Mamma, because he's too little. Stereotyping? Sure. And perfectly accurate.

I have a fantasy of telling Liam, "You have to be patient with people. They don't realize you can think for yourself, live independently, drive; they don't know you have a college degree." Wouldn't that be nice, if he can make it true?

Or not. http://kids.nationalgeographic.com/Stories/PeoplePlaces/Downsyndrome

Monsters

2009-05-17T14:57:00.001-07:00

We have monsters in this house. Didn't you know?

Here they are:

The kissy monster. (Stole this from my brother-in-law.) Liam's not impressed. Maybe one day he'll giggle again.

The squealy monster. He's the cause of squealiness: the foul spirit that bites you on the butt and makes you squeal. He now has a new name: "Prednisone."

The monster that need not speak his name. He makes his presence known with a sound, or more likely a smell, and all through the day we've been going, "Whew! Liam! How did you produce that?"

If it's the turkey we gave him (he became a carnivorous baby about a week ago), we'd have a new rule, rendered firmer by each new toot: "Liam, you can never have turkey again. Ever."

He may have to sleep outside tonight.

And, finally, the seizure monster. He bit Liam 5 times today -- way down from the 60 per day of about a month ago. He's the monster that still has to go. Now.

Liam's public relations

2009-05-10T16:59:00.001-07:00

(I'm going to talk about something other than infant spasms today, because I'm sick of worrying. I will say that they are reduced by the 'roids but not eliminated.)

We keep hearing:

"He's gotten so big!"

I understand what this really means, even if the speaker doesn't: when you see a baby about once a month, every time, he looks noticeably bigger. Because Liam isn't big. He's at about 5th percentile for his age (10th to 15th after adjusting for his being a premie). He's a little baby. (He is rather chubby, though.) When I hear the "so big" comment, I try to translate it as "Time flies, doesn't it?"

(Marisa points out, well, you've got to say something. "Look how big" is much nicer than "He sure does look scrawny. Don't you feed him?" And as Miss Manners points out, the reason polite things are worn and cliched is that they work.)

This weekend at a church social we heard a delightful thing: "Can I hold him?" It's not just nice that Marisa and I got to eat despite Liam's fussiness. It's nice that we had such obviously sincere expressions of delight at how cute our baby is -- and offers of baby-sitting from people we know.

One other comment: we've had several people come up to us and say, "Oh, I just love these children with Down syndrome!" It's a little creepy. Is that like loving children with ketchup?

As Rikki's Mom points out in a recent post (see her blog about her and her teenager with DS), Rikki isn't "these children with Down syndrome"; Rikki is Rikki. See her for herself -- and Liam for himself. Or for his primary identity, which is " baby." (Marisa says: "eating machine"! She said that while Liam was tasting her shirt.)

But I think there's a positive spin we can put on this too. Once you've known someone with DS, it gives you a link, I imagine. (Not me. But I may be a little standoffish.) I can imagine caring for someone because he reminds you of you or someone else that you love.

So overall, I'll just be happy to have all these offers to hold a squealy baby, especially now that infant spasms and 'roids have turned our giggly baby into one with a serious everlasting gripe against the world. Lord, I want the playfulness and the smiles back. So, I am sure, does he.

Tenterhooks

2009-05-04T06:33:00.001-07:00

The good news is that the seizures have dropped since our baby boy went on 'roids.

The bad news is that they were down more 2 days ago than they were yesterday. (Marisa was almost ready to cry.) I don't know how long before we know whether this drug is the thing. Marisa's supposed to call the doc Thursday.

To be fair, we're counting more things as seizures: to start with, we'd only count them if they were in series, and over the past 2 days, they've largely been isolated. But he had those all along; we just didn't count them, because we weren't sure. Now we're sure.

One of the side effects is increased hunger. Boy, has he got it! He woke up in the middle of the night giving emphatic aargh! sounds -- not his usual wail of despair but an assertive "I want something so go get it right now!" ...so after he nursed he got most of a bottle and 2 tablespoons of yams.

I'm not convinced it's the drug. I think he's ready for the next level of growth, because his crankiness is so much like what he showed immediately before we put him on solid food. It's time for more, more, more!

...and after a week of no smiles, he actually gave a giggle. But he's still mostly cranky. (Another side effect, they say.)

...the doc is cautiously hopeful that Liam has not yet suffered brain damage, because he doesn't seem to have lost any abilities. In fact over the past 2 weeks while this was happening he's picked up a new one: he can now roll over back to front whenever he wants. No tummy time for me! he says. But we still make him have some, because he needs it.

Keep the prayers going. He's not done yet.

Another drug

2009-04-30T08:08:00.001-07:00

They're giving up on Keppra and whatever the heck that other one is, and putting Liam on Prednisone (I think I have that right), which the doc described as "more aggressive." And about time.

May God grant that this be the wonder drug that works wonders.

I went to the grotto of St. Joseph today (a little place in the woods nearby, next to a retreat center that used to be a convent), to ask God to have mercy and grant Liam good health. You ask too, OK? We've got lots of people praying for him, and we're grateful to all of you.

No major changes, still

2009-04-27T07:29:00.001-07:00

His seizures are pretty constant: 50-60 per day. I don't know when this second drug is supposed to show some change.

I have been sad and despairing. He's hardly smiled for three weeks. When we took him two weeks ago for a portrait, every picture of him had a look of a sad, lost waif.

...and as I was thinking of this blog post Sunday, he decided to do a caper and a giggle. He's still in there. He's not a lump. But we don't see much of his happy side.

...or mine, until this thing works.

New drug

2009-04-21T03:59:00.001-07:00

I can't remember what it is, but it has to work. There aren't many drugs that apply to this apparently.

At least the colic's gone.

He has his Early Intervention visit today.

Improvement -- please?

2009-04-19T17:53:00.001-07:00

I don't want to say the things that I'm thinking, as if that will make them true. Superstition. I'll say them anyway.

A few weeks ago Liam became a lot more giggly, doing a little caper with a laugh because he was interacting with us. Then colic hit him. (The colic's gone, thanks, I think, to Donnital. Costs less than $2 for a bottle; good deal.) Then the seizures came. Now he's a lump, just watching the world, a little fussy, but not doing much. He's still working a little with his lower part (legs and rump) on crawling, and Marisa thinks he's leaning forward more as if he's trying to sit up. But mostly he just watches things with no emotion but a sort of wistful unhappiness.

We were supposed to call Friday to report on his progress (which is: none), and get instructions. We called at 9:10 a.m. When I got back home at 4:40 p.m. they still had not returned our call. We called again. "If you're a doctor, press 9. If you're a patient, we've gone home; stop bothering us. You can call back after the damage you're suffering is rendered permanent by our inattention." I paraphrase only slightly. Why do they do things like that to their patients? I'm afraid the answer is obvious: they just don't care.

We finally got a sort-of answer from an on-call doctor through our pediatrician the next day. They keep upping the dosage, and it keeps having no effect. Maybe this new level will be enough to make some change.

We're horribly worried about what will happen if the medication does not bring it under control. And I miss Liam. I want him back. I don't think he's dazed or zoned out; I like to think he's just not feeling good, and wants to do the baby equivalent of lying around the house, reading a book, and speaking in monosyllables until it feels better. May it happen real soon.

Update late Sunday: we counted 8 seizures today. That's way better than 60. Of course, we have our priest, Marisa's friends, some Knights of Columbus, grandparents, aunts, and cousins, one grandmother's Bible study, a local Church of God, and about 6 churches in Georgia praying for him. (No reason you can't join the crew too, right now!) Are we seeing an answer?

Another set of 20 seizures in a row this morning, so we just don't know.

He takes another hit

2009-04-14T08:55:00.001-07:00

The neurologist used the term "infantile spasms." An Internet search on this gave us our first fright. He didn't use the term "West syndrome," but the Internet seems to use them interchangeably.

The prognosis for children with West syndrome generally (not just those with Down syndrome) is horrible. For Down syndrome children, Wikipedia thinks things are better:

On average, West syndrome appears in 1 to 5 per 100 children with Down's syndrome as babies. Whereas this form of epilepsy is relatively difficult to treat in children who do not have the chromosomal differences involved in Down's syndrome, the syndrome often affects those who do far more mildly and they often react better to medication. The German Down Syndrom InfoCenter noted in 2003 that what was normally a serious epilepsy was in such cases often a relatively benign one.

EEG records for children with Down's syndrome are often more symmetrical with fewer unusual findings. Although not all children can become entirely free from attacks with medication, children with Down's syndrome are less likely to go on to develop Lennox-Gastaut syndrome or other forms of epilepsy than those without additional hereditary material on the 21st chromosome. The reason why it is easier to treat children with Down's syndrome is not known.

If, however, seizures are difficult to control, children with Down's Syndrome are at risk to develop an autistic spectrum disorder.

...but I can't confirm this elsewhere. I can find more bad news, however.

A savage attack on my optimism

2009-04-12T18:21:00.001-07:00

Two things happened over the past week that tried my optimism.

I'll start with the minor one: colic. Liam has cried unconsolably every night for the past 8 days. It used to annoy me when he cried. Now he's so obviously in sincere distress and it's so conventional (babies get colic; I knew that) that I can listen to him and it doesn't stress me at all. It only makes me a little sad that he's cried himself to sleep every night for over a week. My father is mailing me a stethoscope (!) so I can listen to his tummy and report.

But the main reason it's only making me blue rather than seriously distressed is the other thing that happened. Monday night I saw him making a jerking motion forward with his head that didn't look right. Tuesday night he did it again, and I got alarmed.

We looked up "infant hunch neck" and then "infant spasm" on Internet, and my alarm turned into terror. The two causes we found were West syndrome, which correlates with Down syndrome, and tuberous sclerosis. Each was associated with serious brain damage and mental retardation. The YouTube video on tuberous sclerosis emphasized how devastating it is to have the diagnosis and how appropriate despair is. (They were asking for donations.)

The pediatrician on call said, "I've never heard of symptoms like this before," and wouldn't even advise us on whether to take him in the next day. (We'll be careful never to get stuck with him!) But our regular pediatrician ordered an EEG.  Liam had it that afternoon, with me chomping at the bits because it took so long to get the wires on him we went through a set of these episodes and didn't get EEG of any of it. But apparently they can get enough info anyway.

During this time...Marisa wasn't as worried as I was. (This changed as the pediatrician started sounding more concerned.) I think I know why. She's been low-grade worried all along: saying he's not noticing the world much, he's uninterested in his toys, and doesn't care much who talks to him, or if, although he does like to be held.

"The Early Intervention teacher says he's on target," I say.

"Yes," she says, "but I don't believe her!"

I don't either, now, as I see him retreat from how he was the week before -- from a sort of giggly squealiness to cranky just-getting-by. (That could just be the colic, though.)  And I've been talking around tears for the past few days, because the only two explanations I could find on Internet that didn't seem stupidly wrong were devastating. Marisa was scared, but not as much as me, at first.

After two days of the neurologist saying, "What EEG? I didn't see any EEG," we got our (tentative) answer. If the EEG's right, he said, this isn't "infant spasm," but "myoclonic" something, which means . . . well, Dad says "myo" means "muscle" and "clonic" means "spasm," so it's not exactly a diagnosis, but it does mean that the expert thinks it isn't the horrible things that Internet presented. (The Internet really sucks sometimes.) As of this morning Liam's on something to control the episodes, and I don't think he's had one all day -- certainly not a string of twenty or more. Does it really work that fast? He's been fussy, but not clearly different, so maybe we aren't seeing side effects.

And the pediatrician did tell us right off that the episodes weren't causing him damage, so I didn't need to be concerned that we must fix it all, right now. We'll be at the neurologist's next week.

It's been a rough week. As the frequency and duration of the episodes increased, I was faced with my helplessness over the issue in a way that I wasn't even when we first got the diagnosis of Down's. I started believing we might lose him. But the medicine, or something, seems to be working, and our current diagnosis suggests this is an annoyance rather than evidence of impending doom.

And you know what?  The worst is a real possibility. And it always was, for Liam and every baby. There's no guarantees. We just pretend there are, to keep us calm. Usually it works. But as one friend said, "If you have a baby, every six months something will terrify you like this." That's one down.

Levels of optimism

2009-04-06T06:41:00.001-07:00

I get happy when Liam does something new, and sad when he hasn't for a while.

Liam's Early Intervention teacher gave him the assignment of either crawling or sitting up this month. I don't see either happening by her next visit, but he does put those knees under him and struggle, and he can move backwards and rotate.

About a week ago he started being way more active, too. He smiled a lot more, and when he eats, he's all business: open mouth for that spoon, rather than staring into la-la land. On the other hand, he's also taken to a nightly screaming session starting around 8pm. I think the fix is to be held. We'll see.

So after he started doing all these things, I asked Marisa if she felt better about him now. She didn't. She thinks he should be noticing more. Maybe it's the stereotypical mother role. Maybe not.

OK, possibly he's behind. But if so, not by much! (Is this denial? If so, I'll embrace it!)

I also feel better if I know I'm doing what I'm supposed to. Early Intervention teacher gave us things to do and we're doing them. He's tried a variety of foods and is doing fine on them. (So far, he's one of those rice-powder, sweet-potato, green-bean, carrot, oatmeal, applesauce, banana, and strained-peas babies.)

Gratuitous baby pictures

2009-03-29T18:37:00.001-07:00

Nothing gut-wrenching this week, and isn't that fine? Instead, Liam has started sticking his rear up in the air in an attempt to crawl. When he was with Marisa, he moved about a foot and a half backward, which I hear is the way they get started crawling. I've seen him struggle himself around 180 degrees.

Actually, let me say that differently. It's not just that nothing's gut-wrenching: it's delightful. He's doing wonderfully, and I'm happy.

[caption id="attachment_451" align="alignleft" width="300" caption="That's what he thinks, for sure."][/caption]

[caption id="attachment_453" align="alignleft" width="225" caption="He loves his mobile."][/caption]

[caption id="attachment_455" align="alignright" width="300" caption="About yay big?"][/caption]

[caption id="attachment_456" align="alignright" width="225" caption="Looks like a rough day, with consolation."][/caption]

Poppa in charge

2009-03-22T18:48:00.001-07:00

Today I've got baby boy to myself, since Marisa is doing volunteer work with a club. She's out around 9 to 3.

She left me in bed with a kiss and a baby. After a while trying to squeeze out a few more ounces of sleep, I got up and made plans.

I would clean up the living room, bedroom, kitchen, and dining room, do the laundry, wash the dishes, maybe light a fire in the fireplace, play music for baby boy to listen to, play with him, feed him, keep him from crying too much, and do some programming for my research at work. (OK, you already know how that was going to turn out, and so did I once I thought about it. But bear with me.)

There was a sneaky, mean component to this. I wanted to show Marisa that there was just no reason to leave the house a mess when you're home with a baby. Look -- I can do it in one morning!

Yech.

There was a competing thought of: he's going to cry and cry and cry and I'm going to be pulling my hair out by 3pm, begging her to take him so I can go somewhere peaceful for, oh, about a week.

Here's how it worked out.

9:00: me out of bed. I empty the trash cans, put on a load of diapers, did the morning ablutions, and did some picking up.

9:30: he makes noise, so I come and get him. I put him up with the Boppi around him, so he can sit and lean forward on his hands; the Early Intervention teacher suggests that, to get him used to using his hands for support.

We do some tummy time, and he rolled over 3 times! I put on music. I think he needs more of that for brain development. He showed no particular interest, but I thinked he liked me singing to him.

Then he got some time in his play area, and I got a bottle out. Better than wait till he's screaming for it.

Eventually he got some time watching his mobile, and I did laundry, reorganized his diaper bag because I can never find anything in it without dumping it out, and put away his clothes.

At 10:45 he'd had enough. We did the bottle thing. Then I remembered: it's almost his usual solid-food lunch time. So, while he fretted, I went to get his containers and spoon, and found they'd got solid dried food on them because I'd been too busy with him to clean them the night before, and then forgot. So much for being prepared. I soaked them and washed them and microwaved 2 ice-cube tray cubes of sweet potatoes and one of green beans, mixed up some rice cereal with expressed milk, and got him practically naked so I wouldn't have food on his clothes. He fretted some during the meal, his way of saying, can I please have something to wash this down with? But he doesn't do well with the bottle when he's completely vertical.

He got a little more play-area time, either talking or fretting, and I watered the plants and cleaned the bathroom. Then I put outdoor clothes on him; we went out and planted a blackberry vine someone gave me the night before, and went for a drive.

12:15: We're back. He's zonked in his car seat. For God's sake, let him sleep. I can do something productive.

12:25: I realize that if I'm going to eat lunch, it's best if it's while he's asleep.

12:35: While I'm putting leftovers in the microwave and wondering how we missed that pie remnant (I cooked the pie on Feb 26), Liam wakes up.

12:40: It's on the table, and so is he! He's quiet if I'm in the room. He lets me eat.

12:50: Liam says, It's my turn now! He can't reliably hold the bottle right now, so there'll be no dishwashing.

1:00: Tummy time, then I put him in his play area so I can wash dishes. He's still fussing. I give him a bottle. He's a bottomless pit! But he can hold his bottle, right? Nope.

1:20 He stops being fretful when he's on my lap. He wants to be social. I get a few wisps of smile by tickling him. I also make funny noises and faces, and maybe his smile is in response to that. If so, it'll be his first reaction to another's emotional content.

My mind is two places: "I love him so much. Isn't it great I can do this today?" and "If he'd go to sleep, I could do more work."

1:30: Maybe the reason he keeps putting his hands on his face and rubbing his eyes is that 15-minute nap wasn't enough! I put him in bed. As I do, his eyes get big and he gives me a big smile. Is he wakeful again? Time will tell.

1:45 Great -- phone call. It was a telemarketer: the warranty robo-calls everyone seems to get. I actually got to a real person. She was beyond hostile. If I'm lucky, I'll get that address from the phone company's trace, and there can be prosecution going on. I'll be everyone's hero if that happens, fer sure.

1:55 Dishes are clean. I think baby boy's asleep.

...

2:10 While I'm arranging the flowers I just cut, he wakes up. OK; so I put him in that chair on the table so I can finish arranging. Not good enough. He's wailing.

I put him in his crib so I can finish, frustrated.

He needs bottle, and gets it.

2:30: Marisa gets home. After some more squealing while he eats, he's done, and starts giving out big smiles.

Upshot: lots of play, and I see the appeal of staying home with him, trying new things, playing. I'd get frustrated never getting anything else done, though.

And as for my ambitions...well, for some reason Marisa didn't walk in and say, "You picked up! It looks so nice!" But she did like the flowers.

Milestones (Part III)

2009-03-15T18:50:00.001-07:00

Around the first of December, Liam started grabbing things intentionally.

About a week later, he laughed for the first time, when his mother tickled him. Now he's going strong.

Soon after he took a toy, grabbed it, and threw it.

Rockin'.

More recently, he's done a few new things. He became so squealy about 3 weeks ago; we thought he was hungry, so we put him on solid food. (Rice powder mixed with milk.) He reacted very seriously, with wiggling and excitement, saying, "This is a big deal! I don't know if I like it, but...it's major!"

It still wasn't enough. So this week he became a sweet-potato baby. We might have to hold an intervention: "Liam, this is how your sweet-potato addiction is affecting me, and this is what I'll do if you don't get help." To which he'll reply, "I already have help. It's not like I'm feeding myself!"

He's now up to pureed green beans. Yuck. He seems to think the same thing, making a face when he starts, but hey, it's food.

He found himself in the mirror, and stared for about 15 minutes.

He can hold his own bottle, which our Early Intervention teacher says is a skill beyond his age.

But at the same time...

He still doesn't seem to have empathy. That is, he might smile and laugh at you, but not because you're smiling. He doesn't react to being "flirted" with.

He shows an interest in a few toys, but many of the exercises you're supposed to do to help him learn sitting up, rolling over, etc., are done by tempting him with a toy. He's perfectly content to just sit and watch that toy. (This may be a personality thing; some of the books refer to babies as being "lookers" or "grabbers" when it comes to new experiences, and Liam's a looker so far.)

I say to Marisa, "Every time our Early Intervention teacher comes by, she says he's on target." But is she right? We've never raised a baby before, so we don't know.

We have another Early Intervention visit next week. I hope for reassurance.

Or, more to the point, I hope Liam will repeat his pattern of waiting till the last minute and then doing what he's supposed to -- like a student cramming for an exam!

How not to talk to a parent of a baby with a problem: keep bringing up abortion

2009-03-08T21:37:00.001-07:00

Abortion keeps rearing its ugly head in conversations about Liam -- which, it should be obvious, is hardly a compliment to him. No matter what you think about the political issue, that's horribly offensive.

One friend told me his experience with his own Down's son, and gave me some kindly advice: see to the state of your now-strained marriage (!), and be sure and do an amnio next time so you won't have any more like Liam.

Over lunch another wanted to talk to me about the same thing -- while I kept interrupting to say "we do not need to talk about this," and wondering how soon I could get the check.

I know these men to some degree. They like me; they were trying to be kind. What world do we live in, in which it qualifies as "kind" to tell a father he should consider torturing to death some future children -- for being too much like the son he already has and loves?

What could I say: "Yes, I wish your children were dead, too"?

This is not (I hope) a left-right issue. (The left-right issue surely matters more, but it's still separate.) There are some things you can't bring up civilly to anyone who didn't ask: your view that his marriage was a mistake, even if you think it was; what's wrong with his mother, even if the answer is "everything"; and whether his childrens' deaths might be all for the best.

This post comes down before Liam learns to read. I don't want him to know until way later that people who aren't axe murderers talk like that.

Solid food

2009-03-01T17:15:00.001-08:00

About one week ago, he started fretting all through the day. I thought he was just hungry. So we went for the next step: the rice cereal babies start on. He was unsure how he felt about it, but he didn't say no!

...and after four days of this new regimen, I think I can definitively say: yes, that was it. He was hungry, and he needed more food, right now. He's also changed his sleeping pattern: rather than staying fretful, he takes a late afternoon nap.

He's a fat baby. But I feel a little bad that we didn't know what he needed was solid food, now. (Down's children are more likely to be too fat, but what our pediatrician says is, give him all he wants. Fat's what you make brain cells out of!) He's 5 1/2 months old, 4 1/2 months developmentally, and they say start around 6 months. What they should say is, start when he's just got to have it. Which, according to him, is right now!

It's also not quite true that the first few feedings are just lessons. He still doesn't know how to eat (he pushes it out with sucking motions), but it's getting into him anyway.

Wish we'd known these things earlier.

Nip it in the bud, Andy

2009-02-22T18:45:00.001-08:00

There are schools of thought on how to deal with the demanding nature of a baby: the way he must have it now now now, and if he isn't sure what "it" is, he can scream all the more!

Power struggle. This one comes from a couple I knew in grad school. Their daughter of less than six months was playing them for supremacy, her father told me. They let her cry to show her who was boss. "She knows!" dad said. "She knows!" I don't know what she supposedly knew, but I know what she really did know at that age: that she was in distress, and afraid, and no one would help her.

I try not to pick fights with people who can't even pick up their own heads yet. Winning would be a booby prize.

Giving up. We have a bib (given to us) that says, I may be small but I'm the boss! Liam will never see it. At least not after he learns to read.

Nip it in the bud, Andy. This seems at first blush a little more scientific: it's based on the behaviorist notion that if you reward the behavior, you'll get more of it.

And I think that is happening right now with Liam. He gets food when he cries for it. So naturally he'll cry more, to get more satisfaction, right? And his patience is getting thinner and thinner. I've timed him at half a second between having the nipple taken out of his mouth (so the bottle can refill with air) and screaming like he's having surgery without anaesthetic.

But...how else can he communicate what he needs? If he stopped crying, it would be a disaster, because he wouldn't get what he needed when he needed it.

Barney Fife would be right about, oh, cocaine use, or bullying, but not about crying. We don't need to nip that in the bud.

Give him what he needs. Think about what an ideal leader would do: he would make decisions, and he would make them for the benefit of his followers, not of himself.

If I make a decision about what Liam gets, should I do it primarily based on what's convenient for me, or on what he needs? His needs take precedence. (Note that I said his needs, not his wants. He may want to never take another bath, or to stay up and play as he gets crankier and crankier from needing sleep.)

And how do I find out his needs? I can get some sense of them, but ultimately he's the one who knows if he's hungry, and the first to know if he's wet.

So we make our best guess, guided by his demands. And so far we find that usually there's a reason he was wailing; it just took us a while to figure it out. (It shouldn't be so hard. It's almost always either hunger, a wet butt, or a desire to be held. But when it isn't, Marisa has a wearying day, that's for sure.)

I refuse this silly viewpoint that if he gets what he needs, we lose. If he gets what he needs, we win, because we love him and want him to get what he needs. Somebody has to be the adult here. Why not the adults in the house?

So here are the things that calm him down, from most likely to least.

Foooooooood!

Diaper change

Being picked up

Watching his mobile. Oh, my God, he loves this thing. I'll never know why

His "Little Bo Peep" music box. And if plays while the mobile is playing, no problem

His swing

Tickling

If all else fails...the baby burrito, mentioned earlier. Wrap him tight, hold him facing out and slightly down, rock him, and shhhhhhhh into his ear. It works! (And it, plus the swing, was the only way we could induce him to sleep rather than yell, yesterday)

...and once in a blue moon, he'll suck on a pacifier. But this isn't his thing. It's as if he's seen through the hype and realized there's no food in it, so why would he bother? You're not fooling anybody with that! he says

Breastfeeding for dads

2009-02-15T16:20:00.001-08:00

When my wife wanted me to go with her to the breastfeeding class at the hospital, I was more than dubious. "It doesn't matter how much I learn," I protested. "I'm never going to be any good at it!"

I went anyway. I can't remember what we covered. (It is going to be so hard to avoid puns, so I won't even try.)

But I do know that when Liam got here, he was sooo tired, almost too tired to eat at all, and way too tired to suck hard. (A common problem for Down's babies, apparently, and for premies.) He'd zonk as soon as he got started. We had to feed him from a syringe with a tube. He much preferred that method: almost no work on his part. He'd shake his head back and forth with excitement when he felt that finger, and for a while he thought fingers, not breasts, were the source of milk. I know they didn't teach us that in the breastfeeding class.

Our "lactation consultant" told us to think of these not as meals but as "breastfeeding lessons," Good advice: it was weeks before he could get a meal that way. No big deal: the pediatrician told us, "Breast milk is a wonderful thing, but all the benefits you get, you get with some -- it doesn't have to be 100%."

So now I'm going to tell you what we bought that was useful, and what wasn't, in the quest to get a weak feeder to turn into the hungry monster we have today. Do take into account that he still isn't subsisting on Marisa -- he gets more formula than her in a day, presumably because he doesn't work her hard enough to stimulate more production. Maybe we're missing something.

The "Maserati of breast pumps," they called it (the yellow thing to the right). You're really going to want to rent it, they said, to make sure you get them stimulated to make as much as they can, when he's not able to work them hard enough. It has a two-phase pumping system, internal power supply, and V6 fuel-injected engine, or something like that.Marisa couldn't tell any useful difference between that and the, I'd suppose, Ford Pinto of breast pumps she borrowed from a friend (right).

This device on the left has to be the most 3vil thing ever invented, and I am saying that while writing on a Microsoft Vista computer. This "supplemental nursing system" is an inverted bottle for milk, with tubes dangling out. You're supposed to tape the tubes near the nipple (sorry if this is embarrassing, but I don't know how else to say it) so they're actually in his mouth, and he gets a lot more reward for the same amount of suction.The tape loses its stickiness when it gets wet, which of course happens immediately, so you have to hold them in place with your fingers. The tubes can be stopped from dribbling, but it's not trivial. We could never see that he got any milk into him, as opposed to on his face or down his chin, from them. (It's sort of preparation for when he starts eating solid food, right?) We've had one other mother comment on this, and she felt the same way: it's simply a way of pouring breast milk on the mother's clothes.

Also ineffective: any sort of lactation-enhancing teas Marisa tried.

So what did work?

The syringe and tube assembly pictured above, with Liam sucking on Marisa's finger. We got it at the hospital.

Periodontal syringes like the one on the right. They get that milk in there fast. I think they're designed for one use, for whatever dentists do with them, so do expect them to come apart eventually; but they're cheap. Got this at the lactation consultant's office.

Bottles with nipples shaped like a breast, from Wal-Mart, Target, wherever.

One more note: our pediatrician told us, "Absolutely, don't worry about him getting fat." (She said this when he looked like Buddha.) "Fat's what brain cells are made of." She did tell us to try to make him take bigger meals, and wait longer between them; but he can have all he wants. Life sure is easier that way!

New visitors to the site this week...

2009-02-12T23:05:00.001-08:00

...may be dropping by because of a link from the article in Art of Manliness.

Welcome!

For this blog to make any sense, it's best to read it in order: first the Introduction, then the posts from October, best read in chronological order (bottom of the page to the top).

Liam is currently doing quite well. At least, he thinks so:

A film, and Liam as an adult

2009-02-08T16:42:00.001-08:00

Shower (Xi Zao, 1999), *****.

Yes, this actually is relevant. (It's also full of spoilers. Seriously, go see the film and then come back and read this post.)

Now that you're back...

The film is a story about Daming (on the left), but I'm going to concentrate on his retarded brother Herming (on the right; Dad's in the middle). Herming helps his father run the bathhouse business. His life is just about perfect. He knows exactly what to do every single day, and he loves doing it: mopping, laying out towels, greeting all his friends, and smiling at everyone.

But Dad's getting old, and dies in the middle of the film.

Just to make sure the viewer knows there's no way to restore Herming's happy life...the Chinese government intends to raze the entire neighborhood. Can they go someplace and set up the same community elsewhere? But people are going their separate ways, and in these new apartments they've got private hot water heaters so they can bathe at home and won't need this anachronistic bathhouse thing any more. Herming's only option will be to go live with his brother Daming: the one who left the community, rarely came back, and didn't even tell his wife he had a mentally retarded brother. The one who tried to resolve the problem (temporarily to be sure) by forcing Herming into an institution very much against his will. Yes -- that brother.

You might say this is just a dramatic way of making the plot twist a knife in you, but if you think about it, it's realistic. Everything changes, and if you're the sort that needs stability, then in the long term, you're screwed.

I'm an old poppa; I got started late. Fortunately, Down's people now live into at least early old age; Liam will probably outlive me. (I hope so!) I keep having nice visions of him being able to do college-level work, living on his own, finding people who aren't me and Marisa to love him, and -- what I'm really picturing is him having Down syndrome have no effect on his life past making him sterile and keeping him from getting a PhD. This is not realistic.

Even before I knew Herming's world was in trouble, I'd start to tear up when I saw how happy he was. I totally got that this is Liam's best likely future: being happy, and not being his own man; having others' decisions determine his situation. "God's special children," such people are sometimes called. But I don't want Liam to remain a child forever.

When Herming finally accepted (since he had no choice) that his ideal life was over; his father was gone; his community was gone; and he had to be in a world that wasn't really right for him...he said goodbye to the bathhouse (already being dismantled) by belting out the favorite song of one of the patrons: "O Sole Mio," leading me to tear up again.

Then the film stopped. Why so sudden? But then I knew: there was nothing else to say.

And I guess it really was his story, after all.

How to talk to a new parent of a baby with a problem

2009-02-01T17:21:00.001-08:00

Something you're bound to wonder if you aren't such a parent.

Strangely enough, the answer that feels best at my end is Miss Manners's simple advice for all sorts of life events: go with the classics. For weddings, "Congratulations!" (No need to add "I hope it all works out"!) For a death in the family, "I'm so sorry." (Adding "But you should be happy because he's in a better place" is not the best idea.) For the birth of a child, "Congratulations" is still the way to go. Our friend Sheila said it was a week before anybody congratulated her on the birth of her (Down's) daughter.* What a shame!

The classic answers are classic for a reason: they're exactly the right thing to say. A new baby is a wonderful gift. His illnesses aren't, if he has any, but the first thing to recognize is the delight of the new baby.

The classic answers aren't interesting, but your job in such a case isn't to be interesting, it's to be kind. The other good thing for you is it's so simple to remember -- "Congrats" for blessed events, and "I'm sorry" for negative ones. (Even sick babies and unwise marriages are blessed events, by definition. All brides are lovely and all babies are cute. It's the law.)

I had another experience later that illustrates the converse: support your friends in their parental pride, but let them have their upset, too.

A friend commented that Liam looked perfectly normal to her. I think the mothers over at DownSyn Forum might bristle, but I didn't even notice. But she was upset and regretful, and when she found me to apologize profusely, I said, "It's OK. We know he has this problem of Down syndrome. Saying it doesn't make it any more real!"

She said, "Oh, but who doesn't have problems?"

I said, "It's a biggie to us! It's OK to recognize it. It doesn't mean he's any less."

"Well, everybody's different!" she said. "Maybe he's better off with what he has than if he had my issues, or yours."

That is, she wanted to make the bad side go away by not recognizing it.

So I let her. But by that point we'd been living with Down's scary prospect for nearly 4 months, and I could handle it. Earlier I might have been frustrated with this.

My thoughts: the baby merits "Congratulations!" but the Down's really does merit "I'm sorry." Let the new parents have their delight (and some comments about how cute he is wouldn't hurt!), but let them have their sadness, too. For the moment, it's about them.

*My wife remembers this differently: that everyone in Sheila's family was supportive. Maybe Sheila meant non-family members. I do know that her family adores their new addition, as our family adores ours.

People, and things

2009-01-25T19:47:00.001-08:00

(Note: I'm going to cut back on posting to once a week until I have more to talk about. Things are going great with Liam, which gives me less to talk about, but more to be happy about. So it's good news!)

So I end up talking to a colleague who has a college-age son with either Aspberger's or autism -- it's sort of borderline. Their first clue was that he didn't talk till he was four. Four. I'd be freaking out. Which made me wonder...

Autism is diagnosed later, two to four, I think. It's characterized by detachment from people and emotional content, thinking more about things than people, finding faces confusing and mechanisms interesting. (Far as I know, anyway.)

How can they not know something's up, when the baby's 4 months old, like Liam? (Crotalus might know. Crotalus?) Liam stares at faces continually. It's like he's drinking you in: just sitting there, sucking a bottle, whatever, he's got an adult in his sights. (Especially me and Marisa!) There's no way he's not getting faces.

And at the same time we get a little worried (possibly prematurely) because he's not showing more interest in things: toys, things he can grab, things he can manipulate. He'll watch a noisy toy sometimes as it goes by (even when he was 2 months old), and he'll sometimes grab something (intentionally? not sure), but he clearly prefers faces to things. (I have since read that this is typical for Down's infants: right on time with socializing, delayed with manipulating objects.)

OK: I know almost nothing about autism. But I do know something about being an engineer, and it seems that Aspberger's is an extreme version of being an engineer: very, very thing-oriented. There's a lot to be said for being thing-oriented. It keeps the machines going.

But Liam will probably be better served by being people-oriented, and based on what we see so far (and I know it's just age-appropriate), he's doing fine. (I will not be superstitious and erase this post for fear of a jinx!) Keep him in your prayers, that he'll stay on track.

(Addendum: we went to the "developmental pediatrician" today. They tested him in ways we've come to expect: dangling a toy in front of him to see if he'd follow it with his eyes (he did), or if he'd grab it (he didn't); seeing if he turns to look when we speak (he does) or if they ring a bell (he was otherwise occupied). He's mostly on target. They say the clasping of hands (like he's begging or praying) is a precursor to being a grabber, so he's not far off, although we'd love to see him grab for things with more intent.

Marisa put a sort of mobile on his car seat, and he did seem to repeatedly attempt to grab some things. Not much success yet, but if he tries, he'll win!

Once again...people, versus things, and people are winning. It's not such a bad thing.)