Both Hands and a Flashlight

Good Babies

Mary — Thu, 25 Jun 2009 00:30:36 +0000

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.Similar Posts:

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Interrupting the Loop

Tim — Thu, 18 Jun 2009 02:40:35 +0000

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!Similar Posts:

Autism – Life in the Company of Not-So-Strangers

Tim — Tue, 16 Jun 2009 01:08:42 +0000

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.Similar Posts:

Social Smiles

Mary — Thu, 11 Jun 2009 00:05:44 +0000

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.Similar Posts:

We Get All a-Twitter

Tim — Tue, 09 Jun 2009 01:55:22 +0000

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.)

Similar Posts:

Do the “Whatever It Takes Pokey”

Tim — Mon, 08 Jun 2009 01:48:57 +0000

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

Tim — Wed, 03 Jun 2009 02:18:17 +0000

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 at night, and sometimes even in our own bed too. The nursing/recliner sleeping thing has certainly been rough on Mary. I think we’d both forgotten how much the sleep depravation babies bring with them can turn even the best of us into drooling, narcoleptic idiots.

The J-Man is struggling more than before in his adjustment to everything. Weekdays when he’s at school much of the day, he does fairly well overall. We haven’t seen any major, ongoing issues at school, which we think has been a real achievement for him. He certainly has been ‘off’, with his teacher and OT noticing what we have been at home – he’s hard to calm down and get to focus and generally keep still in one place for any length of time. It’s clear the lack of structure in our chaotic house right now is really causing him some stress.

A couple of hours after he gets home from school, he gets more and more into his “running rebel yell” mode, where he runs aimlessly around the downstairs hollering. He’s not upset or angry or anything – as a matter of fact, he’s generally smiling and even laughing while he’s doing it – but it’s like he’s turned into pure, nearly uncontrollable, kinetic energy. Eventually he can get so overloaded that he starts coming unraveled. This has been really bad over the weekends where he doesn’t get the structure of school and losing him to his frenetic running and hollering is almost a given.

We’re been doing some serious therapeutic brushing and joint compressions lately [a real basic overview here - just don't go doing it on your own without a trained OT], which do help, but when he’s heading toward full freak-out, the calming effects of them last little more than a few minutes. Even staying ahead of the freak-out, the brushing and compressions only seem to partially forestall the inevitable. Right now, we can’t really have much structure around the house, so it’s clear we need some more serious sensory intervention.

The OT at school is starting him on an experiment with a weighted vest. [a decent overview here] We tried this about a year ago. He was kinda young for it then, and even the little bit of extra weight threw his then more fragile gross motor skills and balance off so much that he couldn’t even walk in a straight line. Reports from Day 1 of this latest experiment with it was mixed and inconclusive, but it takes a few days to discern much about whether it’s helping or not.

On the personal side of things, to be honest, I’ve been having a very rough time of things the last several days. Prolonged lack of decent sleep is usually a one-way ticket to a bad place for me regardless of anything else. Most days, I’m a walking, finely-tuned chemistry set. With our daily – particularly nighttime – schedules being what they are right now and all the new and exciting and stressful and sometimes confusing changes in our lives, I haven’t found a way to rebalance that equation.

Physically, my body is feeling a lot older the past couple of weeks, too, to the point where it’s often hard to bend over to do much and even walking anything more than a couple of lengths of the house feels like running a couple of miles. I’ve seen more of my chiropractor than usual, and I’m going for more therapeutic work tomorrow to see whether she can get my back and knee to move. Even simple things like bending over to change a diaper or walking the baby around are getting harder.

Trying to coax a non-sleeping baby through the night and a stressed, unfocused, whirling dervish of an autistic toddler – along with his crying brother – through the day has some weekends felt like a bridge too far for me. I think it’s the need to divide time between them that’s been the hardest for me. I haven’t reached any sort of peace with that yet. I know it’ll come someday. Right now, it’s just hard.

I had forgotten how tiring and emotionally and physically challenging these first weeks with a new baby can be, even without all the other stuff in our lives. I just hope we soon get to the point where we get just enough sleep to restore just enough brain cells to really enjoy and appreciate how good things really are. It’s hard to keep perspective when your main objective is simply to make sure everyone is wearing the correct clothes and you don’t drool on yourself in public… at least not much. Similar Posts:

His Inscrutable Music Preferences – Don’t Stop! Edition

Tim — Thu, 28 May 2009 01:23:18 +0000

I usually try to dissect the curious events of our day for their meaning, deep or otherwise. But I just got nothin’ for you on this one.

The J-Man’s Preschool Class of Autistic Wonderment joined the older grades from the ‘regular’ classrooms for a school assembly of sorts where some cover band (who I assume cater to the elementary school crowd) did a cappella versions of familiar songs. Note, though, that this is the kind of a cappella group where many of the singers are acting as the instruments, which can be both loud and rather sensory-overloading.

Anyway, they did covers of Rihanna (I’m so uncool that I had to look up how to spell her name) and the Jonas Brothers (no comments on the strange irony of this from those of you with inside knowledge) to what I’m sure were the grating squeals of dozens of little girls, along with a bunch of other songs. The older kids sang along, but for nearly all the songs, the J-Man had his head buried in his teacher’s lap – a.k.a. the ostrich defense.

But for one, he perked right up and started having a great fun time. I really tried to find a way to cleverly lead into this, but to no avail. Just listen and see.

Get the Flash Player to see this player.

Like I said, I just got nothin’ for ya here.Similar Posts:

Legos as means of communicating emotion?

Tim — Sat, 23 May 2009 20:59:26 +0000

It continues to be barely-organized bedlam here at the Flashlight house. The J-Man has expressed scant opinion of his little brother, however, though in a gesture of uncertain motive, he did take the diaper changing mat off of the changing pad and dropped it over the baby while he was sleeping. It managed to land in an appropriate, blanket-like position, but it could just as easily have been a byproduct of the J-Man’s dislike of cloth/paper/similarly-thin items being anywhere but on the floor or in a container.

So we continue to attempt to discern his mood about Baby Brother with little luck. However, I did see him complete this fine piece of work as part of what has turned into his regular meditation through building blocks. I’ll let you ponder what I think it resembles.

OK, I’ll spare you the pondering. Is he giving us a big, two-foot-tall, multi-colored middle finger about life in general right now? We report, you decide. Similar Posts:

The VERY LONG birth story of E. Normous

Mary — Sat, 23 May 2009 00:45:26 +0000

10 lb 2.1 oz, 22 1/4 inches, 1:53 PM, May 5, 2009:

When I went to my appointment on Monday (40 weeks, 1 day), the doctor mentioned that they wanted to put me on the induction list for the next week if I didn’t have the baby during that week. OK, I’m cool with that. They said, “we don’t have any induction openings until at least next Tuesday” so I figured I would have the baby before then anyway. UNTIL… they did a size check, and estimated him to be 10lb 6oz. Boy howdy did the doctors/nurses start burning up the phone lines to the hospital then! They wanted me on the “cancellation list” NOW for an induction. We made it home after the appointment, and sat down to eat… and the phone rang telling me that we would go in the next morning for induction! The hospital was supposed to call between 6 and 8 AM. So, on Tuesday morning at 5:30 AM, our phone rang, and the hospital asked us to be there at 6:45 AM for induction. We had gone to bed at about 12:30…

My parents had come up the night before so they could be with the J-man during the day. They got him dressed and to school while we were at the hospital. They seemed OK with our incredibly specific instructions, although Grammy is often determined to do things the “Grammy way!”

So we got to the hospital, and our awesome doula Elly got there, and they started the saline bag… and we waited… and waited… and finally about 8 AM, the doctor came in and ordered the pitocin and the penicillin (GBS +). (This is the part where I had complained for an hour – I could have SLEPT LONGER!) They hooked up the 2 monitors on my belly, and they kept moving! All this technology, and nobody can come up with monitors better than these?

I started having reasonably painful contractions from the beginning, but they were about 15 minutes apart. They felt weird, though. Instead of coming from back to front, then going down into my pelvis, these were starting in the front, going to the back, and then going down my butt. It was SO WEIRD! When I was induced with the J-man (41 weeks, 2 days) the contractions really didn’t hurt for a couple hours, and even when they did hurt, changing my position to standing completely helped.

I mentioned this to the nurse, and she decided to check positioning – of course while I was having an unpleasant contraction. She looked concerned… (nurses: NEVER do the concerned look on a laboring woman!) and went to get the doctor. The doctor came in with the ultrasound machine… and E had shifted to completely transverse (sideways), from the day before when he was head down!

The doctor called everything right then… she said they simply couldn’t let me labor like that with very little chance of a good outcome. I was all, “Can we cut the pitocin right NOW then?!”

The doctor told Tim to RUN to the car to take all our labor stuff back, and to get my contacts case and glasses… that we would be in the OR at 10:30 AM. It was 9:45 then.

This… was untrue. Our doula stayed with us to the part where they took me to the OR. She talked me down from being so angry/unhappy with my body for not being able to have this baby “the old fashioned way.” I love her…

There were SEVERAL emergencies, and a couple of deliveries… and I finally made it to the OR at about 1:30 PM (more complaining about how I could have slept!). They were very busy, and when I came in, I heard someone say they had 2 more “add-ons” after me, one of which was twins, and everyone groaned.

The anesthesiologist came in and tried the spinal, but must have gotten it wrong because he had to re-poke me. (This will be important later.) They laid me back, and started the process, and I immediately got sick. Always fun to throw up flat on your back. Got some Zofran in my IV, and was OK. Tim came in and sat with me. After major pulling and tugging, they got E out. The doctor said that not only was he transverse, but the cord was wrapped around his neck, so I was the kind of patient that c-sections are really made for. I got to see E just barely as they went by to the anteroom for clean-up and weighing, and Tim went with him. About that time, I got REALLY sick and couldn’t stop throwing up. They gave me Reglan and finally got me stopped. During all this of course, the doctors were still putting me back together. Tim and E came back and we did a little cheek to cheek, then they took E to recovery.

E had low blood sugar (30!) and was given a bottle of formula in the nursery, but really soon after I got to my room from recovery, they brought him (and Tim) in. He was so adorable! And huge! They didn’t even bother with the Newborn sized diapers, and put him into a size 6 months shirt! It was surprising the difference in being on the actual maternity ward, and being in the “overflow patient tower” where we were when the J-man was born. In the OPT, the staff essentially figured we knew what we were doing (they were wrong), and left us alone unless we called… several times. In the maternity “pod” the nurses were always up on everything, and seriously babied us! Us, the parents! It was like they couldn’t do enough for us, and that’s not a bad thing when Mama can’t stand up.

We’re doing pretty well. The second day I ended up having an epidural blood patch because I had a “spinal headache” (because I had that extra hole in the derma mater). Those headaches are AWFUL. I mean, other than that I was recovering so well, but if I sat up, I was almost blinded with the pain. Luckily, the patch went well, and I felt better almost immediately.

My milk came in on that Thursday, and I was so engorged I was having to use a manual pump to be able to pull out my nipple so E could latch. This surprised the heck out of the nurses, who assumed the milk wouldn’t come in for several more days. Now, though, we seem to be in a good rhythm with the nursing. By that I mean, E eats constantly, and I make enough milk for that. The reason I’m pretty sure about that? At our doctor’s appointment on Tuesday for reflux (where E was 2 weeks old) his weight was actually 10lb 9oz!Similar Posts:

Time flies when you’re too tired to tell time

Tim — Wed, 20 May 2009 16:07:17 +0000

I just realized it’s been a week since we last posted. Yikes!

The last few days have felt rather like survival mode. Little E has awful reflux, so none of us are sleeping. We’re on our third medication now, which had to be compounded and the only compounding pharmacy is 30-40 minutes away. That doesn’t sound like much, but at rush hour and being so tired that I’m not even sure I’m driving in an actual lane, that was a real struggle. We just feel terrible that he’s having to suffer through this, and we also feel like less-than-great parents for not being able to fix it.

In the meantime, the J-Man has been showing some signs of realization that this whole brother thing is a permanent condition. He hasn’t had any negative behavior toward the baby at all. He is starting some attention-seeking stuff, which is completely understandable. It just makes me feel bad when I’m trying to soothe a miserable baby by walking him lap after lap around the house with the J-Man following behind me and looking sad like we’re all in this sort of ‘blah’ parade around the downstairs.

He had a unusually prolonged tantrum this morning about not getting his cookie (which he doesn’t eat, just carries it around until it’s mush) until he had breakfast. (”First breakfast, then cookie!” – didn’t work…) That was no fun on so little sleep. It’s rather odd that our traditionally poor sleeper is the only one in the house actually getting any sleep at night.

He’s also been doing more of the running back and forth and hollering thing, which is a bit like a cross between ‘I’m overloaded’ and his full-body, whirling dervish, stim-fest. I don’t think it’s at a worrisome level, just something we monitor to get a better sense of his overall mood. He continues to do great at school. If things deteriorated there, I’d start to worry that things were heading south on us. If he struggles within all that structure, that’s not a great sign.

Interestingly enough, all these changes seem to be bringing about improvements in his communication. It’s almost like he feels he needs to try harder to get his point across with the baby around. At one level, this makes me a little sad that perhaps he feels he’s being left out, but the communication itself is a positive thing. We’ve also been able to change a few other routines (like bath time) without much incident. So we’ve seen a lot of positives, even if perhaps they are born out of a lot of stress for him.

Of course, all it takes is for our kids to express one of their frequent moments of cuteness to soothe our tired selves and keep us going until one of these days we finally get some sleep and everything hopefully returns to some sort of equilibrium. Until then we have cute kids and coffee!Similar Posts:

“Who moved my seat?” or “When little things beget huge meltdowns”

Tim — Wed, 13 May 2009 20:52:08 +0000

Yesterday afternoon was bleak. We’ve begun the gradual process of car seat rearranging so the J-Man will end up behind the driver seat and Little E behind the passenger seat so the driver can better see him and stick a hand back there if need be.

We didn’t want the J-Man to think his little brother had suddenly displaced him, so we decided to move his seat before we installed E’s seat and went somewhere in the car together. The plan was to get J-Man comfortable on that side and then put them both in the car and go to the store or something.

So, Day 1 of moving the car seat? Complete and utter disaster.

Let’s put this on a scale. We measure meltdowns in Dentist Units – where 1.0 D.U. is the worst meltdown possible, which we can gauge from our visits to the dentist. Haircuts have historically peaked at about 0.9 D.U. Typical tantrums are about 0.1 – 0.2 D.U. I think electrocution or the sudden loss of three or more body parts would be about 1.1 D.U. to give you some idea.

This car seat debacle was up around 0.95 D.U. He went into a complete panic and fought like he was drowning, which may be what it felt like. I tried to remain as calm as possible, or as calm as one can be when you feel muscle pulling and maybe tearing in your shoulder. After some number of minutes of chaos, I finally got him in and we went home with no real issues.

The woman in the car next to us during all this (this was in the school parking lot) was kind and understanding since she has two autistic kids and has been through this all before. For about 0.2 seconds, I thought about what the other parents in the parking lot might be thinking, but beyond that, the only things in my brain primarily focused on just survival. But I do appreciate the kindness and understanding of others like that mom who’ve walked in these same shoes. They don’t really have to say anything, just nod and radiate their knowing and their compassion.

The good news – this morning was pretty much normal, and he got in his seat on the new side like it wasn’t a big deal. So I guess the moral of the story is, little changes can bring about incredible stresses and meltdowns in our kids, but they can prove more resilient than we give them credit for. Small steps, patience, understanding, and a lot of ice.

Speaking of which, I’m still icing my shoulder, but I think this is part of the lesson too. It’s difficult, it’s a physical and emotional challenge for everyone – autistic or not – but things will heal up and we’ll keep moving forward.Similar Posts:

In these days of a million adjustments…

Tim — Tue, 12 May 2009 02:58:19 +0000

Well, we’ve been home from the hospital since Friday afternoon, and as you might expect, things have been a wee bit chaotic around the Flashlight house. However, I think overall things are going pretty well.

For what they’re worth, here are some of my random observations of our first few days of Parenting x2.

* Things have gone pretty smoothly, relatively speaking of course. In the day-to-day chaos of our lives, anticipatory anxiety is mostly a waste of time. The hundred things that do happen are almost completely different than what you worried would happen. That appears to apply here too.

* We suspect that the J-Man thinks that the baby is just visiting and will go away at some point. I also suspect that this evening he started to get this sinking feeling that this is a permanent situation.

* So far, we haven’t seen any real regressive behaviors or any signs of abnormally high stress in the J-Man. Yay! We’ll take that as a huge positive. He was quite clingy this evening and needed some serious Daddy time, which is why I began to suspect that he’s clueing in to the permanence of this. All that said, though, he’s hanging with the routine pretty well and is probably coping as well as anybody.

* Getting to hang out in the recliner with a son on each side should be in the dictionary as one of the definitions of ‘perfect contentment’. You enjoy that minute before your wiggly toddler gets up and runs off as completely as you can while it lasts. It makes you feel like all this is going to turn out fine.

* I feel a lot less like my attention is divided between the two of them (which I feared) and more that I focus on making every minute with each of them count.

* Having the routine and structure of school has been a godsend for him and for us. It’s amazing how much better he handles life when he’s in school.

* When your baby is the least little bit of ‘a sleeper’, life goes a lot, lot easier. It really helps when he is largely uncaring about loud noises when you have the Stimmy Sound Machine running around the house.

* On a related note, you spend a lot of time comparing random things about what your older kid was like as a baby. The J-Man was never a sleeper, so that definitely not-so-random thing is a big topic of conversation. It’s not like Little E is a big night sleeper at this point, but getting sleep at all is still a relative improvement. He slept 4 1/2 hours straight the other night and we worried that he was dead. J-Man didn’t do that for months.

* I forgot about all the billion random, administrative tasks that have to be done when a child is born. I want to be spending time with my kids, not filling out some damn piece of paper again.

* I think most parents plan and obsess way less with their second child. I think those of us who simply don’t have time to plan anything do so even less. I didn’t even bother to relearn hardly any of the normal ‘what to do with a new baby’ instructions. Stuff does come back to you, though you do get this sense of dread when you realize that you should know something but don’t remember how – like swaddling or how to deal with crap exploding out at the speed of sound while you’re changing your baby’s diaper.

* Two things of major consequence have to happen when we have a baby. One must be weather related, the other must be house related, but neither must be related to each other. With the J-Man, it was Hurricane Katrina and an exploded sewer pipe in our yard. With Little E, it was a tornado warning all around us and a dead freezer full of food in our garage.

* When you have an autistic child, you can’t help but at least occasionally watch for signs of it in your baby. It’s way too early but – rational, fair, or not – it’s there in the back of your mind; might as well be honest about it. I think it’s just one way to try to be prepared for the future.

* Love really does expand so you can love two kids just as wholly and completely as you loved one. As a matter of fact, it both expands and multiplies. I accepted this as one of the truths of existence, but I never really got it at anything beyond a cerebral level until now.

* I’m married to the most awesome woman in the world (no offense to anyone in our audience) and I have two wonderful, beautiful, perfect sons. My God, how great is it to be me!Similar Posts:

Baby Pictures!

Tim — Thu, 07 May 2009 18:56:54 +0000

Here you go! We know he’s wonderful and adorable, but you can still feel free to tell us so!

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It’s Baby de Mayo!

Tim — Thu, 07 May 2009 02:34:47 +0000

We are overjoyed to announce the birth of the 4th member of the Flashlight clan! He arrived yesterday (Cinco de Mayo!) by c-section at 1:53PM. He was (neither of these are typos) 10 lbs 2 oz and 22 1/4 inches! He was born having outgrown whole bunches of clothes and diapers. He is, of course, wonderful and perfect in every way – just like Mama.

We’ve yet to come up with a blog name for him. (Of course, we do have a real name for him.) Mary suggested ‘E. Normous’ after meeting this big bundle of wonder, who her doctor called “the biggest 10-pound baby I’ve ever seen.” Whether it’ll be that or ‘Big E’ or something else E-related, we’ll ponder it when we’re more lucid.

It’s been a very frenetic couple of days, but beyond everyone being completely exhausted, we’re doing well. Mary already appears well enough to run laps. She’s awesome like that.

The baby is trying to eat everything in the hospital and generally being sweet. The J-Man is still very dubious about the whole thing, but I caught him sneaking some glances at the baby, so the first little steps toward brotherhood have been made. They will be tenuous steps to be sure.

And of course, in typical family drama, all this happened in the midst of tornado warnings and an apparent cutover to generator at the hospital yesterday evening at some point, but everyone is fine.

We can’t thank you enough for all your thoughts, prayers, well wishes,
and support! Pictures and more stories coming soon!Similar Posts:

The last day before everything changes – again

Tim — Tue, 05 May 2009 01:44:50 +0000

After Mary’s 40+ week ultrasound today that estimated the baby to be 10lbs 6oz (that’s not a typo), she’s been fast tracked for an induction, as in tomorrow morning. We did get a good laugh that it appears he’ll be a Cinco de Mayo baby. Photo possibilities galore!

For me, I’m having a lot of complex emotions tonight, but we’re running around so much that it’s hard to even begin to process them. I’ve probably talked before that I live in a 24-hour bubble – where I rarely give much thought to anything that happened more than 12 hours ago or that will happen more than 12 hours from now. We just live in the immediate; that’s how it goes. So thinking ahead about ‘delivery day’ has been hard for me to do because of this whole way we live. I figured we had a few more days yet, but given the ways of babies, it seems like a silly thing to figure on.

It was a lot more difficult to put the J-Man to bed tonight because there’s something about it being the last night of just us. What’s to come will be more amazing than I could possibly imagine, but today marks the day when we write the final words in this over 3 1/2-year, life-changing, unpredictable, emotion-filled, endlessly-amazing chapter. After I put him down, I went to finish putting up the ceiling fan in the nursery. Let me just say, it’s hard to assemble a ceiling fan with tears in your eyes. I guess I’d be foolish to not be overwhelmed by the enormity and the wonder of what’s about to happen.

The J-Man was 9lbs 4oz, 21 1/2″, and sunny side up, and Mary got him out the old-fashioned way, so if everything aligns, I have no doubt she can do it again. Hold Wonder Woman thoughts for her!

News, pictures, and more to come! See you soon!Similar Posts:

Apparently we can’t have babies without a national emergency

Tim — Fri, 01 May 2009 23:57:11 +0000

The J-Man was born during Hurricane Katrina, though we are many hundreds of miles away from New Orleans. However, our hospital politely but insistently urged us out the door to make room for the wave of Katrina moms heading our way. That was fine by us, though, as we didn’t want to be there any longer than necessary. 36 hours was plenty.

So, just in time for the impending arrival of The Bean, we have THE FLU FORMERLY KNOWN AS SWINE FLU PANIC! Ignoring the actual realities of whether this constitutes a real emergency, there are practical issues here to consider. The first place in a hospital they’re going to lock down in the event they go into some sort of quarantine mode – at about the same time as the ER – is the labor and delivery wing. The hospital we’re going to has a completely separate L&D unit with only one way in, which means they can completely barricade it if necessary. And just because it’s us, Lord knows they probably will by the time we get there.

I don’t want to make too much light of this, but in the grand scheme of things I need to worry about amidst the swarm of stuff trying to get on my list, flu that people here aren’t realizing they have until they’ve gotten over it ranks about 400th. I guess I have a different sense of what I need to panic about these days. If it gets worse, I’ll pay attention. If the hospital makes me wear a hazmat suit to the delivery room, whatever.

If they don’t let the J-Man see him on neutral turf before this wrinkly, screaming kid shows up at the house, we’re going to have a problem. If they cancel school, I’m reopening it myself. All the kids can wear Space Bags if they have to. Those bags aren’t useful for anything else.

But anyway, if you start wondering whether you need to worry about the Bacon Bug, go here and see. And remember, cough into your sleeve, but keep eating lots of bacon.
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The King and His Throne

Tim — Thu, 30 Apr 2009 02:33:52 +0000

Tonight, the J-Man achieved one of the most celebrated milestones in a person’s life. As with many of his grand accomplishments, he did it while he was completely distraught about something else. And honestly, we’re not sure what it was about other than he was probably completely exhausted, which is oddly enough another condition that sometimes brings about these mighty deeds. Regardless, today we celebrate!

He peed on a potty!!!!!!!

Woo hoo!!

Now, we aren’t actually potty training. (We’re waiting for a while after the baby is born.) This whole thing started because every night he would pee on his bath mat after he got out of the tub, and we were tired of washing towels and such every five minutes. So, we figured, what the heck? Why not pull out the toddler potty that was doing little else besides serving as a room ornament (and contemplating another life as a flower planter, perhaps) and sit him on it while we dried him off? Consider it part of the preliminary potty process (say that five times fast) and the rest laundry preservation.

After about four nights of sitting on it (which he did without much consternation surprisingly, though me humming the magic song helped a lot) and doing nothing, tonight after pretty much inconsolable tears throughout bath time, he stood up from his throne and bawled on my shoulder. Then Mary said, “He peed!”

So there we were cheering and practically crying with joy while the J-Man was crying apocalyptic tears of woe on my shoulder about some unknown evil that had nothing to do with the potty. But like with many things around here, we don’t care how it happens; we just celebrate when it does.

Yay, J-Man!Similar Posts:

We’re back! Kinda.

Tim — Tue, 28 Apr 2009 15:57:05 +0000

If you visited the site this morning (and probably late last night), you likely noticed that the whole site had imploded. We were moved to a new server, and in the process something broke. I still haven’t figured out what it was as in the midst of my own troubleshooting, it just started working again. I’d like to claim credit for that, but not sure I can.

Anyway, you may find that some things are borked around here today. Sorry about that. This affected some of my other sites too, so it’s been a fun morning…Similar Posts:

Happy Birthday, Samuel Morse!

Tim — Mon, 27 Apr 2009 21:19:18 +0000

[No, you silly people. We did not name our kid Samuel Morse, and no the baby hasn't arrived yet...]

I think the blogosphere should take a couple of minutes on April 27 and observe the birthday of Samuel Morse, creator of the telegraph system and Morse code – pretty much the Adam and Eve of blogging and Twitter and all that. Heck, Twitter is essentially an out-of-control virus of telegrams, but I digress.

What did the first telegram say 165 years ago?

“What hath God wrought”

Indeed this is something we’re still trying to figure out. But without all that, we would never have been able to have all you cool readers and our community of friends and supporters out there! So, thanks Sam!

But we’re still not naming our kid after you.

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