by Mary on December 5, 2009
For the past few days, we have been schedule freaks. OK, everyone except Dale Jr. He does what he does, when he wants to do it! For everything else, we have pre-planned, pre-made where available, and pre-decided, all before the kids get out of bed in the morning, or after they go to sleep at night.
The J-man’s teacher (hi Mrs. Jennifer!) and his OT (hi Mrs. Jamie!) came over on Tuesday afternoon, and had some good, solid, concrete suggestions about his current sensory issues. The suggestion that we all thought would be the best was to use a picture schedule at home like they do at school. I mean, we already had what we thought of as “routines” but those routines seemed to leave a lot of downtime, and downtime is NOT what the J-man needs right now.
So, man, have we kept him on track! And it seems to have helped, to a certain extent. We’ve still had the “stop, drop, and flop” happen a few times but there has been less stimming and random screeching. WAY less putting hands over ears. I am, however, tired of Pinky Dinky Doo, since we can only have the TV on during the scheduled TV time now, and that’s all the J-man has wanted to watch. Thankfully, he asked for Rachel today. YAY for Signing Time!
We’ve added an enormous amount of brushing. It seems to calm the J-man immensely, and he really likes it. I think if he could request it, he would. In fact, sometimes when we’re done with the “brushing and squishing” routine, he hands the brush back to get whoever is doing it to start again – and so we do.
We’ve changed our eating style – we used to eat in the living room, on tray tables, watching the evening news. My mother will be pleased to know that we now eat at the table, together. This means I have absolutely no idea what’s going on in the world right now, since, as I mentioned, if the TV is on, it’s Pinky Dinky Doo. I don’t stay up late enough to watch the 11 PM news. Tim is up that late, but it’s because he’s working. With all of the hands-on parenting, he’s not really getting any work done during the evening the way he used to. Yeah, our schedule still has some kinks to work out (like, when to MAKE DINNER for the parents) but I’m hoping we figure something out soon because otherwise, Tim just doesn’t sleep, and that’s bad.
Last night, it all came together because Dale Jr took a nap right about the time I needed to put dinner in the oven. The J-man and Tim were outside, swinging, and I scurried around getting everything ready. Right before dinner was ready, Dale Jr woke up, so while I fed him, Tim got dinner out of the oven, then I finished everything off and we sat at the table. The J-man finished his nuggets and applesauce quickly, then asked for “sticks.” When I gave him the container of sticks, Dale Jr was starting to get fussy sitting in his high chair.
Tim and I have given up talking during dinner because we’re shoving food in so fast, but we weren’t anywhere near done at that point. The J-man calmly picked up his container of sticks, walked around the table, sat down at the chair beside Dale Jr’s high chair… and stayed there, looking at him while eating. Since Dale Jr ADORES his big brother, that was enough to make him happy, at least for long enough for us to finish eating. The J-man saw someone in trouble, thought through how he could make it better, and did so.
That action brightened our day. It was just a little light, a match struck, but it stayed lit long enough to light a candle. I look forward to many more candles burning brightly.
by Tim on August 31, 2009
This has been an eventful week here in the Flashlight House to say the least. Late last week we celebrated the anniversary of Mary’s 29th birthday! And tomorrow the J-Man turns 4. I can’t believe it; time goes by so fast.
We don’t do much in the way of birthday presents or parties around here really. We’re a pretty low-key bunch. About all Mary and I do for each other is the one not having the birthday goes and picks up takeout, we try to spend some unhurried time together, and we each get some additional me time that typically involves one of us getting a couple of hours out of the house sometime around our actual birthday.
The J-Man seems like he really couldn’t care less about birthdays. Actually, birthday parties routinely upset him. We’ve gone to his friends’ parties, and – understatement warning – rarely does he enjoy himself much. Strange places, crowds, noise, lots of running kids, etc. just don’t do for him, which I can understand. We go because we feel like he needs some practice at social events, but we know when he’s had enough and adjust accordingly. I can’t remember any of his birthday parties where he didn’t just burrow into somebody’s shoulder most of the time.
The concept of presents to unwrap doesn’t seem to click with him either. His general lack of attachment to things doesn’t lend itself to being excited about gifts on his birthday, Christmas, or whenever. And in what seems endemic to autistic kids, he absolutely hates the Happy Birthday song. He covers his ears and retreats into himself. Somebody really needs to do a research study on this phenomenon.
So, we decided to forgo a birthday party for him this year and celebrate it more in his style rather than in the way I think people (and for a long time us, too) expect it should be. We bought him a new swing for the swing set outside, one with a high back and built almost like a small, plastic recliner. He can’t use kid swings because when he gets excited and stims out, he lets go of the swing and flies off. (Thank God for mulch…) Obviously he’s too big for a toddler bucket swing. This new one is rated up to at least 100 lbs and has a five-point harness.
The weather is supposed to be absolutely beautiful tomorrow afternoon when he gets home from school. (70s in early September?!) What will be our birthday party then? Swinging outside – just us and my dad. Simple gifts. But the kind he loves most of all.
These past few days have gone like that too – one small but unspeakably wonderful gift after another shining through even in the midst of the craziness of everyday life.
[click to continue…]
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.
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.
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.
