by Tim on December 9, 2009
This past weekend, we hit a pretty big low around here. We’d been having all sorts of problems – on top of the myriad other sensory problems – with the J-Man pulling off his sleeper (not unzipping it, but just plain shimmying out of it) and diaper every night within five minutes of going to bed, peeing in his bed, and then just lying there. We’d go in, reclothe him, change his sheets, fuss at him, and put him back to bed.
For a while, this was enough. One cycle of him stripping down and us coming in apparently was enough for him to then settle in for the night – clothed – and sleep. There was the other issue that he’d strip the second he woke up in the morning and do the same thing. If we weren’t in there fast enough, it was time to change sheets again and clean him up as part of everything else we do to get him ready in the morning.
Then about a week ago, things really went downhill. He wouldn’t keep anything on while he was in the bed. We tried fleece sleepers with feet, without feet, two-piece pajamas, etc. and nothing stayed on. We’d check on him a few minutes after changing him and the bed, and there he was naked as the day he was born with his clothes and diaper wadded up in the crib with him. Finally, we ran out of clean sheets. We started laundry, but quickly he fell asleep. So, we let him sleep au naturel.
Next morning, he was wet, of course, but we marched him to the shower, cleaned him up, and went on with the day. Next night, same ordeal, so we just gave up and let him sleep that way again. After the last ‘argument’ with him about it, once we let him be, he fell asleep quickly. Same morning, similar trip to the shower and on with the day.
We weren’t happy with this since obviously he doesn’t have enough control yet to not wet his bed, but short of restraints, we had no idea how to keep his clothes on him. He’s widely known for his Houdini skills and feats of flexibility, trust me. We decided to pick the less bad option and let him sleep that way.
This is where the concept of ‘less bad’ takes a hideous turn.
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by Mary on August 19, 2009
[In case you're wondering about the whole 'Dale Jr.' thing, for you non-Southerners, the son of Dale Earnhardt - a stock car racer of Biblical proportions - is often referred to as Dale Jr., but originally his nickname was Little E. So it looks like our Little E is now Dale Jr.! If that made no sense, just go with it.]
It may have been the best of times. It may have been the worst of times. I really can’t tell you. I remember very little of the J-man’s first year. It was really a blur. I was SO TIRED all the time then that now, when Dale Jr does something, I ask Tim if the J-man did that too… because I truly can’t remember. So, for your reading pleasure, a comparison of the two so far:
Sleep:
J-man: what’s that? Why would you think I needed to sleep? I have to be up to eat every 2 hours anyway, so why would you force me to try to nap (for 25 minutes initially, although we did get that number up to FORTY WHOLE MINUTES)? I sometimes will only sleep while in a carseat with the car moving, so Daddy perfected “driving naps on 540.” Also, putting me down “drowsy but awake?” HA HA HA HA HA. Seriously, just nurse me to sleep, then hold me for at least another 30-40 minutes to make sure I’m really asleep, then carefully, carefully, carefully put me down, leaning your whole upper body into the crib so we are touching until the very end. Plan to be back soon! If I make a noise, or shift slightly, go ahead and get up, because I will be. I was still waking every 2 hours at 7 months, and didn’t sleep through the night until I was 18 months old.
Dale Jr: obviously read those “sleep books.” I love this. I love my crib. Is my thumb there? Then we’re good. I started sleeping 10-12 hours straight per night at 2 months old. I am the poster child for “put me down drowsy but awake” which Mama figured out only because she really had to go to the bathroom, so put me down in my crib for just long enough to do that… and I was out when she came back. I enjoy napping, and have been able to self-soothe from the beginning pretty much. Mama and Daddy spent several nights waking up to make sure I was still alive because they couldn’t believe a baby could sleep that long.
Eating:
J-man: I will nurse and nurse and nurse and nurse and nurse. And hate the bottle. And nurse and nurse and nurse and nurse and never let go even while sleeping. PS: and nurse.
Dale Jr: I nurse when I’m hungry, and then I’m done. I don’t especially like to go to sleep nursing. I have taken a bottle a few times, and seem to be OK with it. I DO nurse about every hour during the day (when I’m not sleeping) but since I don’t nurse at all during the night, Mama is perfectly happy with that.
Size:
J-man: I am HUGE and outgrew some clothes before I ever got to wear them.
Dale Jr: I am HUGER and outgrew a LOT of clothes before I ever got to wear them. Also, I’m out of sync with brother’s clothes sizes, so the hand-me-downs aren’t helping at all. Also, I’m growing out of the 9 month summer clothes that Mama bought when I was 2 months old because I outgrew the 6 month clothes she bought when I was 1 month old.
How Mama’s work is going:
J-man: I occasionally made Daddy drive me to Mama’s office because I would go on bottle strikes and refuse to eat. I ate enough during the day to not starve to death, and then nursed until I could not nurse more at night which made Mama tired. People in Mama’s office got very angry when she went to pump every 3 hours. Mama is surprised she didn’t wreck driving to work everyday in a daze state from lack of sleep.
Dale Jr: Mama’s work people have heard me on conference calls because sometimes I need to eat, and are perfectly fine with that. They also realize Mama gets way more work done now that she’s home.
How Daddy’s work is going:
J-man: Daddy doesn’t get to work during the day. Ever.
Dale Jr: Daddy can work while I nap. Sometimes.
Maybe now is the best of times. It’s not the worst of times. It is a good time.
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.
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.
And welcome finally to Part 3! This is the continuation of our series “What’s Your Autistic Toddler Like Now?”, a journey through what’s happening these days in the life of our autistic 3 1/2-year-old son and sequel to our very popular original article, “What’s Your Autistic Toddler Like?”. I meant to write this sooner, but illness has swept through the Flashlight household and rendered us all pretty useless this week.
If you haven’t already, go back and read Part 1 and Part 2.
I’m calling this group “Moderately Present” as these things are generally more common than not around here, but not as prevalent as the “Significantly Present” group from before. As with the previous posts, some of these are challenges for us and others are just things that are part of our day-to-day life. None of these are meant to be value judgments, just information about what one autistic toddler is like so you can perhaps see similarities in your own children or learn more about how these things are part of another family’s life.
I’ll be dividing this group into two parts. So we’ll finish this up in Part 4 soon.
Note: Wherever you see “DSM-IV” below, this means that attribute is part of the diagnostic criteria for autism spectrum disorders in the Diagnostic and Statistical Manual of Mental Disorders – Fourth Edition or DSM-IV. In medical terms, a specific combination of those DSM-IV criteria is what brings about a diagnosis of autism.
Same obvious disclaimer as before: We are not advising you on how to evaluate your child. Go get them evaluated by professionals with extensive experience with autism. Don’t just rely on some random people on the Internet – namely, people like us.
And here we go!
Characteristics That Are Moderately Present
Fixation or attachment to a particular object or parts of objects (DSM-IV; hard one to nail down for us) – For some, this manifests itself as obsessive-looking hoarding and organizing of objects. You might also see this as what seems like excessive fascination about a particular object (looking at a particular train for a long time or staring at a ceiling fan) or part of an object (a spinning wheel on a car).
The J-Man is all over the map on this one. It has gotten more noticeable over time, but I wouldn’t call anything he does here a major issue. The object(s)-of-the-day rotate regularly through an array of toys. For the longest time it was wooden blocks. Then it went to pieces of his farm animals puzzle, and then on to flash cards, and then wooden numbers, and then stuffed animals (which was cause for much rejoicing actually!), and then plastic food, and then randomly back through the order, occasionally mixing in some other things.
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by Tim on February 9, 2009
One of the bazillion transitions we have to think about on the road to Baby #2 is what to do about the fact that the J-Man is still sleeping in the crib we planned to use for the new baby.
The original idea was to convert his crib into a toddler bed (we have the convertible kind) and then move him into a separate, plain-old toddler bed. At that point, we’d convert the original bed back into its crib state and put the new baby in it. Sounds dynamite on paper. Well, not really, come to think about it, especially when part of this deal is that at some point when the baby moves out of our room, the J-Man may get the room at the end of the hall (i.e., not his current room).
The obvious flaw in the argument is that this is a lot of change to ask an autistic toddler to deal with. The implementation of this plan admittedly had us overwhelmed too. He sleeps very well for the most part, and woe unto anyone who says anything to put that at risk. He didn’t sleep through the night until 16 months old, and even then it took a while after that to get into something like a normal pattern. For most of the first part of his life, he woke up every two hours, every day.
I went in there tonight and watched him sleeping. He’s crammed into a corner of the crib – as he is every night – because it makes him feel safe and relaxed. This is the place where he’s slept for 3 1/2 years. He’s figured out how to find rest here.
I see how peaceful he looks. I think about how hard many days are for him. I think about all the challenges he has to face in his life. And the conclusion seems obvious as I write this.
Buy another crib.
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