Autism thread

So I've been doing respite care for a couple of families for the past few months. Jumped through the hoops to get my fingerprint card-- which included going a couple rounds with a review board to get a misdemeanor marijuana possession charge still on my record from college overlooked-- and attended the training. I work from home on a couple of businesses, this gives me another revenue stream that also gets me out of the house and gives me a little bit of that sort of low-grade direct human contact that I used to get from going into an office, which is good for me, because with my lifestyle the way it is I can get to feeling isolated pretty easily.

Did it on the recommendation of a close friend who has two girls who qualify for respite. 9 and 12, cerebral palsy and autism respectively. They're both super high-functioning; they have their quirks, but nothing too far outside the range of what I'd consider "normal," at least on short acquaintance.

After spending a day a week with them for a couple months running, I'm starting to understand them a little better, though. The 9-year-old with CP, for example, is a little clumsy, always dropping stuff, but what the heck, kids are clumsy, right? It's only recently that I'm starting to fully appreciate that the amount of effort it takes her to JUST be "a little clumsy" is basically the equivalent of someone without CP doing world-class ballet every waking moment of their lives. Turns out that when she was born the doctors told her mom that she would likely never walk.

Her sister, the 12-year-old with autism, is rail-skinny because the sensation of chewing and swallowing bothers her, and looks closer to 9 than to 12, but other than that she's a pretty normal happy little kid. She doesn't naturally grok the concept of personal space or boundaries; the first time she met me she just walked up without a word and climbed up in my lap like a cat would.

Those two, 99% of the time I can treat them like I would any other kids and it works out fine; the trick is recognizing the other 1% and acting appropriately to their needs. I'm working on it, and I f*ck up sometimes; I'm only just starting to know how little I actually know. There's only so much a one-day workshop sipping cheap coffee at a place that smells like a DMV can actually teach you, and their mom has tried to fill me in, but you also can't completely impart 12 years of tacit knowledge about a child's needs over lunch.

The other family is a little different, they've got an adult son with Down's, and it's pretty severe. I guess a fair number of folks with Down's are able to live semi-independently and work paying jobs, and he doesn't seem like he'll ever be one of those. His folks tell me that he's got behavioral issues, tantrums, acting out, that kind of thing. He never does any of that stuff with me, but then, when he's with me I don't have any other priority than making sure he has a good time. When he's with his folks, they've got to try to live their lives, meaning that they can't always bend over backwards for him.

He doesn't like the word "slow," which I get, because it's a word that people use as a pejorative, but it's also a pretty descriptive word. He just plain lives his life at a slower pace than the rest of us. It takes a conscious mental shift for me to adjust my pace to his.

It's tough for me sometimes, because he reminds me a little of my brother. My brother didn't have Down's, he had Klinefelter's, which is pretty rare and affects people pretty differently. In my brother's case, he had very low testosterone, which led to lethargy, weight problems, and being more than a bit of a shut-in. He lived with my Mom until he died of sudden heart failure at the age of 27. My respite client with Down's is a lot farther from typical than my brother was, but he still reminds me of him, and that's tough sometimes, but probably good for me.

I hope everyone is doing ok during this lockdown. Without school I imagine it’s difficult for a lot of people.

It’s been pretty trying here. My son is roaming the house, yelling and getting into things all day. We just ceded our home office to him after we realized he can reach the shelves now and was pulling down papers and eating them. Kept banging on the computers too. Only a matter of time until the monitor or printer was destroyed. Now we’re cramming everything into the master bedroom. The office is just another playroom with toys scattered all over the floor.

His school considered the idea of online learning but gave up because it just wasn’t going to be feasible for the majority of kids- they really require hands on interaction.

They have set him up for teletherapy which insurance is covering at this time. My wife is meeting online with the therapist 3 times a week for an hour. I think she agreed to this in large part because she knows they need some revenue. Essentially the behavioral therapist is giving my wife therapy instructions and she’s carrying them out during the day, collecting data, etc. I don’t know if we’re alone, but wife and I have always found it emotionally difficult to do any kind of structured therapy with our own son.

Right now they’re talking about reopening in June, but I’d be surprised if that happens.

And a new problem has arisen, which is causing a great deal of stress and discouragement.

Our son is still in diapers at 9 years old, despite admittedly sporadic efforts at potty training for the past few years. At least he tended to have bowel movements fairly regularly, averaging once a day. Since about January, he now has an average of 5-15 tiny BM's per day instead of one large one. We feel like we're on constant watch for his next one so we can drag him into the changing closet immediately so he doesn't wind up with diaper rash.

We were hoping it was just a phase that would go away on its own, like some of his self-harming behaviors have. Doesn't seem like it though. If anything it's getting worse.

We are sure it's entirely behavioral- it's not really diarrhea. He seems to be withholding his stool instead of pushing it out. Increasing fiber intake and even miralax did not help. We'll talk to the pediatrician about it soon, but I'll be shocked if they have solutions. At this point, the only thing I can think of is giving him regularly scheduled suppositories. Don't know how safe that would be though.

He also destroyed the big screen TV in our living room. I'm actually surprised it's lasted as long as it has since he enjoys banging on it so much. Luckily, we had more or less stopped using it. Won't be buying a replacement. We're just going to keep the broken one there because I'm too lazy to remove it and patch up the wall behind it.

Holding it in seems to be common, dosing him with “looseners” will probably just mean more mess (I speak from some experience - fiber/prunes). The holding in won’t stop, but because it’s softer, there will be more “escaping”. Scheduling “poop-time” (if it’s something you can manage and pinpoint the right window) would probably work out more favourably.

You’re right. We have to do a behavioral approach. Gonna be quite frustrating for all involved trying to get him to stay on the toilet for more than a couple of minutes though.

Our son was much younger but we had to put him on the toilet every 15 minutes for a couple weeks to get him trained. Then it was like a few days every 30 minutes, 45, 60, etc. It was brutal but at least he complied most of the the time and finally he got it once we worked up to 90 minutes. Had to remove the pull-up to make it uncomfortable.

This would not work with his brother who will fight like his life depends on not sitting on the toilet for 2 minutes. He's still not 100% potty trained for #1 and we have to bribe him with candy. If he does have an accident making him clean it up (even if you have to do hand over hand with him) seems to work as a small deterrent.

Went to see pediatrician a week ago about son holding in his stool. Was hard having a conversation with my son constantly screaming and playing in the sink. As I predicted, it wasn't too helpful. Doctor just recommended large doses of miralax or milk of magnesia to clear him completely out, followed by a smaller daily dose to keep his stools soft.

OK, fine. Trouble is we've been through this cycle several times over the past few months. We need to somehow train him to push it out, not hold it in. I don't think he does it solely due to pain/constipation.

A few years ago we took our son to Emory University for a rigorous potty training course (for peeing). We did make some progress, but not as much as we would have liked, and we've backslid a bit in the subsequent years. It was a pretty torturous experience to be honest, and there's no way we could stay in a hotel with him now. Too much property destruction might occur and we'd likely be kicked out for noise.

Anyway, I strongly suspect they would implement a behavioral plan where we'd give him a suppository every day around the same time. Then make him sit on the toilet until he has a BM (which would effectively be a form of punishment since he would hate sitting). Then reward him and let him up when he has one, thus reinforcing the behavior. Not sure if I can emotionally handle it to be honest.

Well, been about a year now since we started having problems with my son holding in his bowel movements. Progress has been minimal and we’re relying heavily on miralax and suppositories just to keep him emptied out. At least he’s somewhat used to being physically dragged to the toilet now and only has a meltdown over it occasionally. Does try to get up a lot though.

I think probably we can accomplish this if we stick with it (not that we have a choice). I expect it will take years though. So draining and disheartening. I only hope my wife and I stay physically healthy and don’t throw out our backs or something because he’s getting huge. They weighed him at the doctor’s office and he’s only 5 lbs lighter than my wife. Also as tall as my mother-in-law (who’s admittedly very short). He hasn’t even turned 10 quite yet!