June 2009

Good Babies

by Mary on June 24, 2009

People at work have started asking me (since I went back last week) if E is a “good” baby.

Me: “Actually, he’s already working on getting his second tattoo, and we’re not sure if his teeth are going to come in at all thanks to all that meth he’s cooking up and using.”

I hate and despise the term “good baby.” I know what those people mean: does he sleep; does he cry a lot; does he ever allow Mommy or Daddy to put him down? But that has nothing to do with being “good.” He’s a baby! How can he be BAD?

The reason I hate the term? Because by that meaning, the J-man wasn’t a “good” baby. He didn’t sleep pretty much ever, and he cried if you put him down (thanks undetected silent reflux!). But we still thought he was a WONDERFUL baby. Because he’s ours.

We got some serious assvice on things to do to make the J-man into a “good baby” – just let him cry, eventually he’ll go to sleep! Let him go hungry, eventually he’ll eat. Why would you do physical therapy? Force him to let go of your hand and he’ll walk!

We, uh, didn’t follow any of that assvice. And we still thought the J-man was a wonderful baby, and we think he’s a wonderful boy now.

I know, sometimes it gets to the point where you want to throw something, when you’re out of bed for the 5th time that night, and then the baby barfs on you… but I can’t imagine calling my baby anything but good. Or better. Or best. Or even BESTEST BABY EVER.

And E and J are quite different babies, even though the mini-naps we called Snaps seem to come and go for E (meaning sometimes he sleeps longer), while they were a constant for the J-man. But neither is/was being “bad” for not napping, or for napping. It’s what babies do. We didn’t think the J-man was “bad” for not eating. We didn’t think he was “bad” for not walking on schedule. We got him some help with those things.

I worry that there are people out there who DO think their baby is bad, defective in some way, because they don’t meet the milestones that are only general guidelines anyway. We didn’t think the J-man was defective… we thought he needed help. Those are two VERY different mindsets.

“Bad” people get punished in our society, sometimes by the very people who should love them the most. Babies who don’t meet the “good baby” criteria are judged, and so are their parents… and given a label that shouldn’t ever be applied to babies, and that can lead to that child NOT getting the help they need and deserve.

Every baby, no matter what characteristics that baby has, is a good baby.

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Interrupting the Loop

by Tim on June 17, 2009

For quite a while now, the J-Man has been a Lego-maniac. We see this as a very good thing as he wouldn’t touch building blocks of any kind for forever – we suspect for a variety of sensory – particularly tactile – fine motor, and other motor planning/spatial relating sorts of issues. Like many other things, one day it just clicked and now he’s a building machine.

Our building fun currently comes with one significant issue we need to keep an eye on. He’s doing better and better with structured building activities based on a picture (build the simple structure in this picture – like six blocks of alternating colors in one column) or a finite number of blocks (assemble the blocks in this box in whatever way you want, but when they are all together, you’re done).

However, in ‘free build’ mode (here’s a bucket full of blocks, have at it), things can get much more difficult for him. He will sit there and essentially build the same structure over and over again until you stop him. It’s usually an impossible-looking, very tall (20-25+ Duplo blocks high often), skyscraper-like thing that is asymmetrical, defies many laws of physics and building codes, but that generally looks very impressive considering getting him to put two Legos together even a few months ago was nearly unheard of.

But since – despite his best efforts of steadying it with hands and even feet – the structure becomes too unsteady to stay upright. So it falls, breaks into several pieces, and then he tries to reassemble it back to where it was, which continues on to the same collapse of the same building and the repeat of the cycle.

One facet of this I’m not sure whether to be concerned about or not is the constant moaning he does while he’s building. He does vocalize in that way in other contexts, but not to the droning length it goes to while he’s building. He only pauses to breathe. I’ll admit it does wear on my nerves with a crying baby often nearby to add to the chorus. But besides that, this is an instance where reading his vocalization cues is hard for us.

Since he loves blocks so much, I feared interrupting this the other day, but I had to. His structure had the moment before collapsed into about four long sections, so I just took the open blocks bucket and said, “Time to clean up!” No real initial resistance, though he seemed to be largely ignoring me at first save for a brief interruption in the moaning. I just kept talking. “You made some awesome buildings today, and now it’s time to clean up! Daddy will start!” So I took a few extra blocks that were around the floor (not part of the original big structure) and put them in the bucket.

Then I said, “Now J-Man’s turn! Put in!” And much to my surprise, he hurriedly put those sections that had just a minute ago been part of that building and put them right straight into the bucket as they were. He then took what was left of the bottom of the building apart in a couple of quick motions and took the three pieces that left him with and put them in the bucket too. He grabbed the nearby lid, laid it on top of the bucket, and asked for help (“heh” or sometimes the halting but very interactive “Iiiiii wahhhhh heh”- “I want help” for the uninitiated) I pushed down on the lid until it clicked – and this bucket is hard to seal. In barely 30 seconds, the giant bucket of Duplos was cleaned up, mostly by him. Never would have predicted that one.

He sat there in his “I feel relieved” posture – upright, shoulders relaxed, eyes looking thoughtfully at something nearby, no stimming, no more groaning, and in a place receptive to maybe using some words if he feels like it. If he’s in a place where he’s really stressed and bouncing off the walls (literally), if we get him to where he’s in the relieved posture (through a whole repertoire of calming activities), it’s like J-man’s way of saying ‘thank you’. If you sit near him then, you can feel a real tenderness in his spirit that is the essence of who the J-Man is, almost like the real him underneath the stimmy wildman exterior.

OK, so one of the morals of the story. If you find your kids perseverating on something in a way that it seems like they’re stuck in an infinite loop, they may very well be stuck. Find a transitional cue and activity to end their loop and bring them to whatever the next thing should be. You may get resistance or meltdowns, both of which have happened here. But you also may discover what it looks like when you need to ‘rescue’ your child from their infinite loop. They may not know the way out, and if so, you have to show them. These are the sorts of decisions and actions they may rely on us to take for them until they can hopefully begin to learn that skill for themselves.

To the issue of Legos, a new Lego Store just opened here and I’m dying to go. I heard they built an 8-foot-tall Yoda for the grand opening. Squee!

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Today in our chiropractor’s office, there probably weren’t 10 total people in the room – including the chiropractor, his office manager, and us – but an interesting convergence of experiences made itself known. It’s still noteworthy to me, but I’ve found – much to my pleasant surprise – that things like this really aren’t that uncommon.

During the short time we were there, we shared a nice conversation with this wonderful older woman whose 50-year-old son is autistic. Her voice rose from a deep well of experience and wisdom, and came with a reassurance to us autism newbies that everything will turn out in wonderful ways we can’t yet imagine.

We already knew the office manager’s teenage daughter is autistic, and it’s been a joy to talk to her and swap all sorts of great stories. Talking to other parents with our shared experience is just so much less work than talking to anyone else. We can be ourselves and finally have real conversation. The fact that her daughter is much older than the J-Man also allows us to learn from someone else who has been down the path we’re still new to.

Then we met a man who I guess is roughly 50. He gave us the name of a woman very experienced with autistic people who he highly recommended if we needed someone more expert than a regular child care provider during the J-Man’s school breaks.

I find it noteworthy in general when I meet someone who strikes me as kind, thoughtful, caring, and completely without pretense. I sensed all of that in him before he got around to saying anything about himself. Then when he said he was higher-functioning autistic, it filled me with a warmth I needed today. I thought about the J-Man offering generous help like that to another family 50 years from now. Clear and caring words from a good heart. It gave me the sort of long-range perspective I need sometimes.

I know they say you only really become aware of something when it’s important to you – like when you notice lots of blue Honda Civics everywhere as soon as you want to buy one. I know these particular people and many, many more like them were out there before we started along this path and surround us in varying degrees of anonymity each day. Regardless, today reminded me that whether your child is autistic or you are autistic yourself, you are never alone.

We are indeed surrounded by so great a cloud of witnesses. We may think ourselves strange, but we are never strangers to each other.

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Social Smiles

by Mary on June 10, 2009

I remember the J-man’s babyhood as a blur of sleep deprivation and just making it through the day. Of course, we were so incredibly clueless about anything to do with babies then. The J-man was about 7 months old when he stopped nursing every 2 hours, round the clock. (At 7 months, he started ONLY getting up three times per night.) I was an AMAZINGLY tired woman. The fact that I drove back and forth to work without wrecking is miraculous.

Tim did a lot of “driving naps” because the J-man would only nap either lying on someone, or in the car while the car was moving. If Tim wanted to eat, he did it in the car while I was at work. Sometimes the J-man would refuse bottles of pumped milk (for days at a time), and Tim would end up driving to my office so I could nurse instead of pumping. We would sit out in the parking lot for 20 minutes, then they would leave. Tim would pick up lunch for himself and me, so he would eat while I was nursing, and then I ate a cold lunch. I learned that Bojangles chicken is good at any temperature!

This time around, there are many differences. For one thing, there are times when E will actually nap… in the pack-and-play, or in the crib. Granted, he, like many babies, would rather sleep on us than in a bed, but since the J-man refused to nap ANYWHERE except on us or in the car, we take this as the blessing it is. Also, when I go back to work (next week! stupid TCTSNBN and their new rule that c-section moms still only get 6 weeks even though we’re recovering from major surgery and NOT getting to rest in bed during that time) I’ll be working from home, so at least will be able to sleep a little later in the morning, and shouldn’t have the “reverse cycling” issue we had with the J-man. We hope. Pepaw seems so much more comfortable handling a newborn this time, so he comes over occasionally, and can hold E to get his fix… and then play with the J-man to get that fix. Yes, our kids are in fact illegal drugs.

Today was the first day that I’ve truly seen a social smile from E. He had woken from a nap, was clean and had nursed, and I propped him up on my lap and just talked and played and beeped his nose. He smiled… BIG smiles. It was incredible. I teared up (hey, those post-partum hormones hadn’t had a chance to come out before now) and called Tim down to get him to see. He held the little guy, and played with him, and got some smiles of his own.

I told E last night when he wouldn’t go to sleep that it was a good thing he is so cute because otherwise I might have to throw something. If he smiles at me tonight when I say that, I’ll have to wonder if he has inherited Tim’s sarcastic sense of humor. Or mine.

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We Get All a-Twitter

by Tim on June 8, 2009

OK, I’ve pretty much been a ‘what the heck is the point of Twitter?’ person for a long time. I think I’ve finally found a useful purpose for it. Many friends and family keep up with the daily goings-on at our house via my Facebook statuses (statii?), which 99% of you would never see, however. It’s a whole lot easier for me to post a couple of random lines there than to write a blog post in the chaotic days we’re in around our house right now.

So, I got to wondering whether it would be helpful to anyone out there to get a Twitter-style glimpse into the lives of parents with an autistic toddler. Assuming we are anywhere near what passes for ‘average’ for that kind of parent, you might get a representative sample of the ups, downs, struggles, celebrations, frustrations, etc. we experience – a couple of sentences at a time. If nothing else, I promise you’ll see a lot more of our daily roller coaster that doesn’t make it up to the blog, sorta like Both Hands and a Flashlight Unplugged.

This is a total experiment, and it may involve me tweeting to myself. (OK, that sounds bad. Moving on…) But I have a Twitter update app on my iPrecious that lets me update the Twitter page in about 30 seconds from just about anywhere (i.e., I don’t have to be sitting here at my computer concurrent to being free of screaming children), so it’s a fairly easy experiment.

Anyway, you can see the most recent handful of tweets on the right-hand column of this page. (Yeah, I know the text formatting currently sucks; I’ll fix it sometime soon.)

To visit our Twitter page, go to http://www.twitter.com/autismparents. Not surprisingly, we (it’s listed under me, but we are a we around here) are ‘autismparents’ on Twitter, so follow us or do an @autismparents and tweet us!

(Still sounds a little personal to me, but that’s what being in your mid-30s does to you.)

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Do the “Whatever It Takes Pokey”

by Tim on June 7, 2009

Things have been ten kinds of rough around here recently. Surviving the day has been our goal of late. I admit that I don’t much like the person I’ve let myself become lately. I’m grouchy, snippy, frayed at the edges, and generally unable to cope with much. Anybody screaming sends me over the edge, which both kids do well these days. But I’m a firm believer that nobody makes you feel anything; that’s your crap and you have to deal with it. Unfortunately, I’m not dealing with it well – or even minimally well – and I know it.

So, I’ve been grasping at anything that will make any part of our frazzled ‘routine’ easier. The J-Man has been a basket case at night, sometimes fussing not just with variations in the routine, but about parts of our nighttime ritual that are exactly the way they normally are, like I’m skipping a step except I don’t know what he thinks I’m skipping. Sometimes it’s like he’s trying to tell me verbally, but I have no idea what he’s saying, which just escalates both of our frustrations.

Getting his nighttime clothes on was turning into some variant of mixed martial arts, usually with me on the receiving end of the injuries… One night after he completely melted down half-dressed in the floor, I was past feeling desperate. The next night, without any pre-planning or understanding of where this idea even came from – other than perhaps the fact that the J-Man loves music – I just started narrating the process of getting him dressed to song. I tend to narrate half the day anyway, so why not.

And for whatever reason, the tune that came out was “The Hokey Pokey”.

Go figure. It worked.

It sounds completely ridiculous, and the ‘stanzas’ – such as they are – vary between some and a lot every time we go through the routine. But hey, it works – botched meter and rhyme or not.

“We put your left arm in,
we put your left arm in the sleeve,
we get your left arm in,
and your left hand stickin’ out,
your left arm is in, and your left hand’s stickin’ out,
that’s what it’s all about!”

Repeat as often as necessary with whatever words are necessary until kid is clothed. Sigh with relief, and give thanks that all your bodily digits are still attached.

This works for diaper changes too, by the way, though we can often get through those without much in the way of theatrics. But it works in a pinch.

Give thanks for little bits of inspiration.

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When the Only Thing Routine is the Lack of Routine

June 2, 2009

It’s hard to comprehend that Little E is four weeks old today!?!? Time flies! Perhaps it particularly flies when you’re too tired to understand the concept of time anymore. We do seem to be getting some aspects of the baby’s sleep to a better place, so we are starting to get a bit more sleep […]

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