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.
[click to continue…]
by Tim on November 29, 2009
These past weeks have been a serious reality check for us. All of us have been sick, hurt, or both at one point or another. Not surprisingly, this has weakened both our physical and emotional defenses. That’s a nice way of saying that we’ve turned into a bunch of grumpy, rundown, sick people who aren’t coping well.
I tend to process things best by writing about them. This has been one of those periods where every time I sit down to write, my brain just locks up like an overloaded computer. If nothing else, I guess it’s made me appreciate perhaps a little of what days are like for those of our kids whose brains are overwhelmed most of the day every day.
It recently became evident that we were losing control of most facets of our life. The J-Man was obviously experiencing some significant changes to his sensory system, and seemingly none of them for the good. He seems to shoot wildly between wide-open, screechy, running around, stimming overload to almost totally shut down. It’s hard for him to find a happy medium. That on top of all of our physical and emotional wear-and-tear and stress so thick you could cut it with a knife, we’ve been fast reaching an unsustainable place in life. And then last week it became really clear that it was worse than we thought. (More on that in a second.)
[click to continue…]
by Mary on November 10, 2009
The Flashlight family had one of those weekends, and it has carried into this week. We went “big grocery shopping” on Saturday (good thing!) and Tim mentioned a couple of times that he felt funny. I assumed it was a Man Cold (YouTube link) but is seems to have been something much unfunnier. He has spent the last 2 days trying to keep down water. We’re up to watered-down Gatorade and bouillon for him. YUM!
Funny conversation Sunday night:
Mary: (grabbing the cup on the edge of the bathtub) You want some of this Gatorade?
Tim: (answering from somewhere down inside the bowl) I think the cat may have drank out of it. Do you think it’s still OK?
Mary: NO!
The boys both have colds – a newborn having a cold is just AWESOME, y’all! Plus, since we went to Dale Jr’s 6 month appointment last week (which is probably where we all picked up the germs), and were roundly scolded for not having him already on “3 meals, plus a snack,” of solid foods, we’ve been trying to shove more food into him. And that? Has resulted in unpleasant tummy. Screaming, crying, straining, unpleasant tummy. Today I tried adding prunes to the mix, and have decided we’ll have to work up to those 3 meals plus snack.
The J-man is constantly wiping his nose with his sleeve, which means that he has a sore spot underneath his nose, and some serious cheek chappage. I wish there was some way to teach him to blow his nose, but I can’t figure it out. It’s not like he’s going to mimic me doing it. He’ll also hand us a tissue and ask for “no z” but that just gets the tiny bit under his nose, and doesn’t really help because right after we use the tissue, he swipes with this sleeve again anyway. He’s been watching WAY too much Laurie Berkner and Signing Time, but that’s about how much I can handle while carrying around the other sick baby.
And then there’s me. I’ve been OK, except getting a cold, but am being worn down by the lack of sleep, and keeping up with 2 sick kids and 1 sick husband. I now sound as though I am a 55-year-old, 40 pack-a-day smoker.
Thank goodness for Pepaw who came over on Monday, and for my friend Elly who came over on Sunday night when I thought I might have to take Tim to the ER.
We’ll be back!
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.
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!
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.
