Just What We Want

 

Write about vaccines, get lotsa comments; a few accusations that I'm somehow, albeit secretly (so secretly that I don't even know about it myself) employed by Merck or "Big Pharma Inc."; statements that we and other families with children with disabilities "just want to know the cause" and are daily overwhelmed by the mystery of what our children have and of what to do for them.

I aim, some might say, a bit lower. 

The main thing I'd like to know is how to keep making it possible for Charlie and us to have such good days as we've been having. With each passing day that Jim and I are fortunate to share with Charlie, we can see, more and more, why Charlie is as he is; why he struggles with anxiety and obsessions and compulsions, why he can be hyper-attentive about some things at some times and quite unable to stay focused about other things at other times. 

Charlie is like us. Sometimes it seems that a lot of things from both sides of our family---things that people often don't want to talk about, like depression, psychiatric conditions, OCD, and a host of other things "not otherwise specified---have all come together in Charlie. I don't know why that had to happen for our boy but I am glad that Jim and I are Charlie's parents, as I think, due to some of the things we've ourselves had to contend with, we're a bit more fortified to help him. 

Last week (after the, well, agony of snow days + President's Day = days off from school) was four fine days, mostly thanks to the return of Charlie's preferred "school then home" routine. (Yes, I am already feeling some trepidation when he has Spring Break in April.) Saturday turned out to be another fine day. Charlie woke up around 8.30, went into the bathroom, and then went back to bed. 

No big deal----yes big deal. In the not too long ago "not always good ol' days," it was not unusual for me to start the day with a total changing of the sheets, pillows, and blankets on Charlie's bed. Certain connections between the body (needing to perform a certain basic function) and the mind (telling other parts of the body, get out of this bed and into the bathroom pronto) just did not seem to happen for Charlie. There are devices one can buy and programs and protocols to follow to address this, ah, soggy situation, but Jim and I felt it more important that Charlie slept through the night (especially after some years when he had a lot of sleep problems); I always prefer piles of laundry to an unhappy boy. Though, it is true, it's not a very happy circumstance to wake up in a cold, damp bed.

So it seems that body-mind connection is getting made for Charlie. Too, I think he used to think, "once I get up I can't go back to bed even if I really want to." Seems he's gotten more flexible about this (and therefore, more happy: who doesn't welcome the prospect of a few more minutes in bed?).

Saturday passed in walks; a trip to the grocery store during which (gasp) Charlie wanted to buy neither sushi nor any sweet items (except for watermelon; I think he knew that we had plenty of cavity-inducing items in our cabinets already); a mid-day rest for both dad and son (so I did some work on my too-often-put-aside translation); dinner at a friend's house.

Charlie actually spent most of that dinner in the white car, by his choice. He'd visited these friends two summers ago and, over the course of a few hours, made his way onto the porch, into the living room, into the back yard. Last night, he ventured in on his own after a bit, said "hi's" and "no's" and then went back out (the white car has become quite the refuge). And then, "see ya next time" to our (very kindly and wonderful) hosts who'd come out to say good-bye.

While I suspect Charlie meant pretty much "bye" with that "see ya next time," I'm going to take him, and keep him, to his word. I think he might well have hung out in the back and front yards, and on the porch, if it had been warmer (and these friends are so kind and wonderful that I'm quite sure we'll be visiting again).

Once home, and after I'd gone back out to the car with a flashlight to retrieve some miscellaneous blue items Charlie likes to have near by (found one on the snow), Charlie took off his shoes and socks and fixed his gaze on us before saying:

"Bedtime."

To which we had no objections.

Comments

[Regina]

"Saturday turned out to be another fine day. Charlie woke up around 8.30, went into the bathroom, and then went back to bed."

Nice.

Sounds like a mellow day. I hope today is as well.

Take care.

[Emily]

Just read this and the previous post. We have huge episodes of nocturnal enuresis, and I expect to see those continuing on for quite awhile. Our solution is a pullup with extra reinforcement from an o/n insert (for adults). Even so, we still have an almost-daily overflow issue to deal with. We, too, prefer to just let him have a good night's sleep.

We're working with TH on showering, but it's going to take some time...we use similar techniques, and as you observe too, it's not quite as we would do it.

In good time.

Do you think with the new echoing that he's having another developmental spurt of some sort? I think about how much things changed even for me from preteen to teen--how much seemed to become clearer (and some things muddier).

[Regina]

I hesitate to say this, but we did not just let our daughter just sleep through and I did not want her to get used to sleeping in a wet bed. I looked at, but never bought one of those sensors (Based on how those work and the quirks of our child, it just seeme like it was not a bad idea, but might introduce some issues that would complicate things. I also wasn't all that keen on the circuit being activated by already starting urination in the bed). However, I do know a couple of people who bought those and they can work.

It took some relatively sleep-deprived nights for me, but basically we kept a lot of data on bedtime, drinks, amounts, and my husband and I played tag-team checking every hour to see if the bed was wet or dry. If it was dry, cool, sleep on. If not, we did get up, strip the bed and remake it. Being able to bracket out some "witching hours", I observed more closely and noticed that she would sort of wake up but not make it out of the bed. (We were also able to make some predictive correlation with certain drinks and bedtimes.) So when I saw that "warning" behavior, I would quietly motor her out of the bed and into the bathroom without a lot of talk or fuss until business got taken care of and then reversed the process to back to bed. Within 2 weeks I was able to fade to a shoulder tap, which would get her up to go through the process, and shortly thereafter to simply observing her going through the process on her own. After a week of that, I felt fairly confident that I could go back to my own sleep routine.

I'm very glad that this is resolving on its own for Charlie, but it was not for our daughter, and even taking into account potential liabilities of sleepiness (on both our parts), I don't regret doing it, since the instruction took care of something that bothered both of us - she did not like wetting the bed and I did not like the extra washing. YMMV.

[Kristina Chew]

@Regina,
For Charlie, once he was up there was no going back to sleep, hence my hesitation. We did not use pull-ups etc., mostly because he wouldn't wear them. I did note that he tended to wet the bed around 6 or 7 am, so right as he was waking up. But he was so groggy (perhaps also from his meds, and from the melatonin) that we could only have gotten him out of bed and up by carrying and then tugging at him, and _that_ was sure to lead to "drama."

Meanwhile, knocking on wood that Charlie continues to wake himself to use the bathroom. We have pretty much ceased reminding him to go---he takes himself into the bathroom now and seems to have a lot more 'control.'

@Emily,
Am going real slow on the showering. I do think it's a positive that Charlie is wary of being touched (too much and at all) especially in certain places.... I try to be as minimal as possible.

I do think he's having some developmental spurts, maybe 'catching up' with all the growing he did. I sort of feel at times that it's now occurring to Charlie that he can say so many more things...why not try them out?

More clarity opening more avenues for muddying the waters......

[Regina]

@Kristina,
Thanks. I can see the complication. As usual, it does depend on the specifics and details. I hope it keeps going for him, too (and knock on some wood for us as well (smile)).

Sending good wishes.