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!

Arise, thread!

I've taken on another respite client, a mid-forties guy with severe autism. He's mostly non-verbal, just single words and very simple sentences e.g. "want Coke" or "want water." I guess part of his deal is that he has a constant sensation of thirst whether he actually needs to drink or not, so they've got the water in his house turned down to the point where a faucet will only drip. He'll sit there at the kitchen sink with a big 32-oz McDonald's cup and watch it fill, little by little, for about twenty minutes, then knock it back and start over again.

About an hour after his dad left us for our first shift alone together, he decided he urgently needed to be outside and was out the front door before I could do anything about it. He got to his dad's truck, repeating something that sounded like "went away, went away, went away." When he found the door locked he let me coax him back inside. So that was exciting.

I'm cognizant of the fact that the clients I've been working with so far-- the two little girls with CP and autism, the twenties guy with Down's-- have all been playing on easy mode. It's taken years of specialized medical and educational care to get the girls to being 99% ordinary little girls, but that's what they were by the time I met them. And for the Down's guy I worked with, his Saturdays with me were the highlight of his week, especially during lockdown when he didn't have his day program any more. So he was always sweet and loving and on his best behavior with me, and his condition is such that he's not much different to deal with than a little kid, just bigger.

I've found it rewarding work, and I'm considering getting my special ed teaching certificate and making a career out of it instead of a side gig. But before I commit to something like that, I need to know that I can handle it, and not just with Easy Mode clients. So I specifically requested this more challenging one. He's sitting across from me watching TV while I type this.

That must be very aggravating for him- being thirsty all the time. At least he seems pretty patient about getting his water.

I have seen a few people wind up in intensive care due to excessive water consumption. Sometimes it happens with schizophrenia for some reason. It can cause the brain to swell which might result in permanent brain damage or death. Not something you would intuitively think from drinking water, but if he had free access to it, he could potentially kill himself.

So all my new charge wanted all day yesterday was to go to McDonald's. Which was pretty much what I figured, but I wasn't about to try to take him out of the house on my first day alone with him, too many things could have gone wrong.

He was trying to communicate with me all day long, and I could tell he was feeling frustrated and sad and probably scared because so little was getting through to me. His Dad and other care workers had told me some of his usual phrases, so I could get him water or a Coke or a sandwich, but there was a lot more that I just plain couldn't parse. You can't impart years of tacit knowledge about someone like this in a couple of conversations, it's just something I'll have to learn as I go.

Finally his Dad got home and showed me how to handle getting him into the car. He kept saying "[something] car" like it was a question, he seemed very interested in this new vehicle. I said, "yeah, this is my car." He repeated, "my car?" I switched to third person and pointed to myself. "Ben's car." He repeated, "Ben car."

When we got to the intersection and it became clear that it was McDonald's we were going to, he kept trying to give me a hug while we were driving. I could just about have cried.

His Dad had told me the routine for these trips by then, so I got him through the drive-through and got his preferred order and then took him to the little town graveyard where his mother and some other older relatives are buried. That was all he wanted, to get a dollar hamburger and visit his departed family.

He'd been talking about birthdays all day. "Timmy birthday" and "October 5th" (which is his birthday) and "birthday party". Repeating those phrases over and over.

I think, to him, this is what a birthday party is. A day when you get to do whatever you want to do. And all he wanted was a trip to McDonald's and the graveyard. There's something so sweet and sad about that.

Yesterday a neighbor’s seven year old autistic daughter climbed their fence and disappeared into the neighborhood. She’s minimally verbal and can’t really ask for help. Luckily they were able to mobilize a bunch of people and find her between some random fences a while later, but it was quite stressful. I could hear the terror in the guy’s voice. It’s one of my biggest fears and I really felt for the guy as a parent. She was perfectly OK.

Goodness. This is a huge fear of ours as well. So glad they were able to find her. We've been thinking about alarms or a GPS of some sort.

There's a plethora of GPS watches now. We used to have a Gizmopal for our eldest, but that's way out of production now with nicer watches available. They usually come with voice calls, GPS and sometimes talk to text texting. Adding a device like that to an existing Verizon account was $5/month.

gewy wrote:

Yesterday a neighbor’s seven year old autistic daughter climbed their fence and disappeared into the neighborhood. She’s minimally verbal and can’t really ask for help. Luckily they were able to mobilize a bunch of people and find her between some random fences a while later, but it was quite stressful. I could hear the terror in the guy’s voice. It’s one of my biggest fears and I really felt for the guy as a parent. She was perfectly OK.

About four years ago when we were still trying "standard" school with assistance for my eldest, he walked out of the school, evading the adults' supervision. Just walked out into the street. It's a big city. His father was coming to pick him up and just ran into him on the sidewalk. Kinda scary, even though we technically didn't have time to stress out. It's something we worry about. My eldest also isn't super verbal.

Coming to understand a little more about my latest respite charge. He's carrying some trauma on top of his disability. I guess he spent a number of years in a group home in the 90s. They showed us footage of those old group homes in training. Seriously horrifying sh*t. The kind of thing that would turn your stomach if it was happening in a third-world country, let alone a couple miles down the road not too terribly long ago.

He doesn't have much in the way of impulse control. If he wants something, he goes to it by the straightest line possible, and everything between him and it is an obstacle. The exception is food. His dad keeps all his favorite foods just sitting on the counter, and he'll look at it, and sometimes vocalize to indicate that he wants it, but he never takes it. Apparently this is something that he's still carrying from his time in that group home: he is never to take food, he may only be given it. It must have taken something close to literal torture to impress that on him such that it's still with him this strongly, decades later.

His mother was his primary caretaker; she died about a month and a half ago, which is why they brought me on to pick up some of the slack. The agency told me he seems to be adjusting to her absence okay, which from their perspective he is. He's not acting out any more than usual, he's not self-harming or refusing to eat.

But that's because it hasn't sunk in yet. He has the concept of death. Some of the phrases he'll repeat are "Nana heaven" (referring to his grandmother), "Tata heaven" (his grandfather), "Blackie heaven" (a neighbor's dog that he loved to visit with).

He doesn't connect "heaven" with his mother. When he talks about his mother, it's "mama come home," over and over and over. He's still expecting her to come through the front door any time.

He had scratches on his neck the last time I went over. Apparently he got into an altercation with his brother, who is also a respite provider for him. The brother shut off the faucet in the sink where he spends most of his time playing with the tiny trickle of water, and the client attacked him. The brother seems like kind of an idiot. I imagine there's more to the story if the client could tell his side of it.

I tell people that working with the three clients I've had so far have been easy mode. This case is not easy mode. But I think I'm doing well? He talks to me. He takes me by the hand and brings me to something he needs my help with. He has so few tools to use to communicate his wants and needs to others, but I try to listen very hard to the ones he has.

The world has failed this poor guy so thoroughly. I want to be part of the world doing better for him, and for folks like him, from now on.

I’m glad you’re helping him and seem to care. It does make me feel a bit better.

Because as scary as the thought of my son running off and disappearing is, my greatest fear by far is that he’ll wind up in a poorly run group home where no one cares and he’s neglected or abused. He could potentially outlive my wife and me by 30-40 years. He has no siblings or other family to look after him, and unless something dramatic occurs, he’ll be completely unable to advocate for himself. This keeps me up at night and I have no idea what I can do right now to prevent it.