Over the past month, self injury has ramped up for unknown reasons. He’s been randomly punching his chin and the sides of his face to the point that both cheeks are bruised pretty bad. It looks like he’s been in a fight and my wife is even worried someone will call DHR on us for abuse.
It’s never 100% certain, but I’m pretty sure it’s not a dental issue or ear infection. We think it’s probably fulfilling a sensory need. He’s also been yelling out more maybe?
Not really sure where to go from here. Of course I’ll do a bunch of online reading and posting in other forums probably (not that I’ve ever found one I like).
Wife bought him a wrestling helmet with the plan to put it on him when he’s really going at it. I don’t think that’s going to fly with him and honestly he’d need it every waking moment since he hits himself sporadically and suddenly without warning.
We started trying CBD since that worked really well for a former classmate he had. It tastes bitter though so it’s gonna be a struggle getting him to take it. Can’t tell a difference so far but I think he’s only had 2 doses so far.
Next step is to get another child psychiatrist maybe? The last one seemed kind of clueless about this kind of thing. I really don’t want to put him on and antipsychotic and worry about diabetes.
Can you put the CBD in something he likes? I used to go to this fancy bakery that would give you CBD oil infused into the meringue of French macarons. I imagine there are all kinds of things you could put it in.
Maybe. The volume is pretty low.
What we're kind of scared of is the taste may be bad enough that it turns him off of things he likes if we give it to him daily. I might have to do some taste tests myself. Wife says the gummies taste good initially but there's a bitter aftertaste.
After 4 days of CBD in his drink, the self-injury has subsided to baseline. He is still hitting his chin, but not punching the side of his face to the point of bruising. Is it because of the CBD? I kind of doubt it. My guess is it's just regression to the mean. It's not like there was a dramatic effect where he just seemed calmer and more content and stopped yelling and hitting himself altogether. Still, I'll take it.
I am really pissed off and feeling defeated about another situation though. His dentist thinks he needs an impacted tooth extracted by an oral surgeon. It's out of place and could possibly take out some of the other permanent teeth in the front of his mouth, he said. Unfortunately, even with sedation, my son can't cooperate with dental x-rays. After a great struggle we did manage to get some, but the quality was piss poor because he was moving.
Well, we saw the oral surgeon today. It was immediately clear their office was not set up for special needs kids. Cramped waiting room and we had to stand guard and physically redirect our son from grabbing all the instruments and stuff laid out in the exam room. Honestly, we're used to this. It's normal. Disheartening, but no big deal.
More frustratingly, the surgeon just seemed to have no idea what to do without having pristine high quality x-rays. I can understand; he doesn't want to be operating blind. So what's the next step? Are there any other options to get him the info he needs? Vague, unhelpful answers. It felt like he was already wanting to move to the next patient. It felt like he took one look at my son's behavior and the bad x-rays and immediately decided that he didn't want to do anything with him.
He said he's going to talk to the dentist and get back with us, but I don't really see that going anywhere. I honestly expect him to basically tell the dentist there's no point in referring people to him without having good x-rays and leave it at that. I don't think the discussion will be them collaborating to figure out the next step.
I'm not too hopeful about a second opinion either, but maybe we'll ask for one. Pretty sure we're ultimately just going to be waiting and hoping he doesn't lose some teeth that could have potentially been saved. The feeling we're having is a combination of anxiety, anger and a fear that we're failing our son somehow. This has been a common feeling when dealing with the medical system to be honest.
My respite client was off his meds the other week, I guess there was a problem with the pharmacy. His father and primary caregiver warned me that he might be extra aggressive and "hateful" (his word) and that I should just give him whatever he wanted.
I didn't really notice any extra aggression. He did seem a little more demanding than usual-- he wants what he wants when he wants it-- but mostly all he wanted was car rides, so I gave him a couple extra car rides over the course of the day. No big deal.
But mostly what I noticed was that he seemed more aware of his surroundings instead of off with his head in the clouds, more responsive to external stimuli, and maybe a little more verbal. It's had me mulling over the ethics of keeping a developmentally disabled person drugged up all the time so that he's easier for caretakers to handle. Ultimately it's not my decision in this case-- it's between his primary caregiver and his doctors, and I often have to remind myself that I only have him for ten hours one day a week, his family has him the other 158 hours-- but it's something that bears thinking about.
Something else I wanted to get opinions on from the thread, which has to do with verbiage. My training through the agency has been big on what they call "people first" language, which is to always lead with the person, not the disability or condition. "Person with autism" or "adult man with autism" as opposed to "autistic person," etc. Makes sense to me as far as it goes, and it's something I've been trying to make a habit of sticking to.
I understand that the terms "high-functioning" and "low-functioning" are falling out of vogue, and I can see why that would be, so I've been trying to avoid using them. The thing is, sometimes there are practical distinctions that need to be drawn. My current client requires 24/7 supervision. He has required it for his entire life and will continue to require it for the rest of his life. He is semi-verbal and cannot or will not communicate effectively with anyone who does not have experience with interpreting his particular modes of communication. He cannot or will not bath himself, feed himself, etc.
I had a previous client, the young daughter of a friend, who I didn't even know was on the spectrum until her mother told me. She does all the things that any other girl her age does. If there are some things that are different about her due to being on the spectrum, well, everyone's different. With a few exceptions-- she has texture issues with food that caused her severe nutritional problems until her mom got her a dedicated nutritional therapist to help her work past them some-- the way her mind works is sometimes different from a neurotypical person, but not "worse."
I just spent two long paragraphs describing the difference between these two people. A shorthand would be useful, if I can find one that doesn't become problematic. I've occasionally been saying "severe autism" and "mild autism" as an alternative to "high and low functioning," but is that actually better? Is there a better way of describing it? Is there anything about the long-form description I just gave that is actually horrible without me realizing it? I want to be sensitive and I want to use language that reflects that, but sometimes it feels like a game of "gotcha" where folks are just waiting for you to use the wrong word so they can jump in and correct you, and it gets a little exhausting.
Interested in hearing perspectives.
Something else I wanted to get opinions on from the thread, which has to do with verbiage. My training through the agency has been big on what they call "people first" language, which is to always lead with the person, not the disability or condition. "Person with autism" or "adult man with autism" as opposed to "autistic person," etc. Makes sense to me as far as it goes, and it's something I've been trying to make a habit of sticking to.
People first language has been around decades now and is deeply ingrained in the culture of professionals who work with disabled people, and broader society, for that matter. This movement probably represented a major improvement over previous terminology that would almost universally be considered offensive today.
The next shift is the push for using identity first language, which is led by many autistic self-advocates. The thinking is that autism is an integral part of their person, like race or sexual orientation, and verbally separating it out like that is a harmful rejection of their identity. Blind and deaf communities seem to feel the same way, as another example.
Here's a good discussion of it- from ASAN.
Language can be stubborn, but it definitely evolves. I think it would be best to follow the lead of the people most affected by this (autistic people). I suspect it's only a matter of time until using identity first language is universal outside the most ignorant of people. Then there will probably be some new shift that we can't even begin to predict.
I want to be sensitive and I want to use language that reflects that, but sometimes it feels like a game of "gotcha" where folks are just waiting for you to use the wrong word so they can jump in and correct you, and it gets a little exhausting.
Granted, it's often easier said than done, but try to listen and learn from what they're saying. Don't take it personally. They probably feel exhausted themselves.
On a personal note, I hope this kind of thing doesn't completely discourage you from continuing the path you're on. My greatest fear is that after I'm gone my son will ultimately languish somewhere, completely dependent, but without anyone who cares about him. It's obvious to me that you do care.
Interesting day with my respite client. I've spoken here before about his love of cups, and his family's unfortunate habit of leaving trash all around the yard which he treats as a scavenger hunt. At least once, he's found a fast-food cup in the yard and taken a swig of God knows what horrible sludge before I could stop him, so I got to deal with him throwing up for the rest of the day, which was exactly as much fun as it sounds.
I spoke to my agency supervisor about it at one point; it was getting to the point where I was very close to deciding that I couldn't continue to be responsible for this person if they were going to continue leaving such an obvious safety issue unaddressed, and it's also not my job to clean their entire yard for them every time I come over. She spoke to the father, and it must've gotten through a little bit, because he did seem to be making more of an effort for a while.
It's been slipping over time again, though, and today coming in from a car ride he discovered a foam Sonic cup with ants crawling all over it. This time, though, when I told him, "that's nasty, let's throw it in the trash," he listened to me. "Cup trash, cup trash, cup trash." He handed it to me and let me throw it in the trash. Any other time that I've tried something like that, he's become very agitated about the fact that someone is trying to take his new toy that he just found.
How awesome! A breakthrough!
Except of course that nothing's ever that simple, ha ha. Because now instead of wanting to go over the entire yard like an Easter egg hunt looking for "toys" and probably get sick or bitten by ants, he wanted to go searching for more things to throw into the trash. Including several things that were NOT trash and did NOT need to go in there. And then when I finally got him inside, he went to the sink where he spends most of his time and gathered up all his cups, which were clean and perfectly fine for him to play with, and threw them in the trash. And then wanted to make a circuit over the whole house and find anything that vaguely looked like a cup and throw it in the trash.
So while on the one hand it's certainly easier behavior to deal with than drinking ant-filled mystery sludge, and it's endearing that he's suddenly so eager to please, it's still not exactly ideal. Baby steps, I suppose. (-:
I really hope CPS isn't called on us next week when we take our son to the hospital for some dental work under general anesthesia. My son's been really abusing his face recently and the pattern of bruises all over his chin looks very bad. Very suspicious. We have a letter from the school attesting that he self-injures and his child psychiatrist doesn't think it will be a problem and is willing to speak to whoever, but I've read some horror stories online.
We've been trying various medications but nothing has helped so far. The only result we've noticed is they tend to make him super drowsy and he goes to bed really early, only to be up all night. Not good. Really reluctant to go down the route of antipsychotics, but they're the only medications backed up by research it seems. They can increase blood sugar and the thought of my son getting diabetes is terrifying though. It runs very heavily in wife's side of the family. So I don't know what to do.
Wife ordered a boxing helmet that covers the face, so I guess she's gonna try to get him to wear that. I can't imagine he'll keep it on for more than a few seconds.
IPost about the person he's helping
If clean paper cups were left out for him to throw away, would he still get pleasure from it? If that's worth trying, that might be a way to keep in supply of something that keeps him happy.
I wore a hat today when I went for my shift with my respite client, and he seemed very confused by it. He kept pointing to the parts of my hair that were visible under it and saying, "Man hair? Man hair right there?"
So I took off my hat and told him, "it's okay buddy, all my hair's still there."
And he buries his whole hand in my hair and says with finality, "man hair right there."
The last month has been pretty rough for my son and I'm struggling to figure out why. My best guess is it's related to puberty. Some things don't really add up though.
He's been in such a bad mood a lot more often, fussing and crying. Full-blown meltdowns and self-injury are up significantly. At one point he had two dark black bruises on each side of his chin- the worst it's ever been. They're healing up now but he's still hitting himself. Also pinching himself all over his torso, which also has caused bruising. None of this is new- just worse.
He's been sleeping like a log, which is unusual for him. He usually tries his best to stay up as late as he can, but right now, he can even take a big nap in the afternoon and still go to bed super early. After school he tends to crash around 4-5 pm. Unfortunately, this means he's been waking up for the day around 3 am, so it's a vicious cycle. Stupid time change made it worse. He doesn't appear drowsy when he's awake though.
His pediatrician warned us at his last checkup that he'd be getting more moody due to puberty. It wouldn't surprise me if this is how it might manifest in someone with profound autism who can't communicate-- meltdowns and self-injury. I'm pretty sure that sleeping more can be part of puberty as well.
But here's what I'm not sure about. His bowel habits have changed as well. He used to have chronic constipation and we had to give him miralax every day and sometimes suppositories. Now he has looser stools in the early AM without anything. No diet changes. He did have one day of diarrhea, but the behavioral changes started a few days before this. Still, could he have some kind of residual GI illness which is distressing him somehow? He hasn't had any other obvious symptoms suggesting illness though (no fever, coughing, etc) and giving him tylenol didn't help his mood.
Another thing that has me worried and perplexed is that he's suddenly stopped doing some of his favorite activities. He used to love for us to take him on stroller rides around the neighborhood or take him somewhere in the car. "Car" is one of the few words he knows and whenever we said it, he'd eagerly jump up and head to the garage. He'd also try to get in there spontaneously, hoping we'd take him somewhere. Now he is suddenly absolutely opposed to both and gets upset if we try to take him.
Getting him to school has been very difficult. If it were just the car I'd be suspicious that he was trying to avoid going to school maybe? But why would he not want to go in the stroller? At the same time, he also stopped going on his floor swing entirely. A couple of months ago he was spending up to an hour a day on that thing, spinning around- another one of his favorite activities. These issues seem linked to me.
Instead of the garage, he is now stubbornly determined to force his way into the kitchen, which is off limits for him due to the stove, knives, glassware, etc.
His self-injury and general misery had gotten severe enough that we recently started giving him the medication abilify, which is one of only two medications proven to help with irritability with autism. His self-injury has decreased and his mood does seem improved. It's still worse than it was a couple months ago though. I'm wondering if any improvement is a case of regression to the mean rather than any benefit from the medication. I'm also wondering if he's opposed to the stroller, car and his swing because the medication is causing physical restlessness and he wants to move around and not be constrained. It's so hard to tell if the medication is helping, hurting, both... or doing absolutely nothing.
To be honest, we never even got beyond a low dose. Right now we've decided to wean him off of it in case it's causing side effects that he can't communicate to us. Maybe we're doing him a disservice though. I guess if his self-injury takes off again, that implies it was helping and we'll resume. But it's hard to tell when these issues fluctuate on their own for reasons we can't determine. So frustrating.
Time for another long update, in case anyone's interested or has advice, but mainly because I feel the need to unload somewhere and I'm not on Reddit or wherever people post this kind of thing nowadays.
Our son's GI issues and restlessness are back to baseline. Our best guess is that he had a month of diarrhea as an after effect of COVID. We didn't put two and two together on that one since his initial COVID infection was very mild and the GI symptoms didn't start until a week or so later. A month of probiotics and medicine for gastritis may have helped.
The restlessness was probably a side effect of the antipsychotic medication we had him on, trying to reduce his self-injury. I think it just took him a while to want to go on car and stroller rides again, but he's definitely back into it. Sometimes he'll go to the garage door a few times a night and I'll dutifully drive him around because that’s one of the few things he knows how to request: garage door=car ride.
The self-injury, unfortunately, continues. He's got a huge bruise on his flank now from punching himself. His child psychiatrist thinks the way he always combines self-injury with vocalizations is most consistent with a tic disorder. I did a bunch of reading online and it turns out that complex tics like hitting oneself and pinching oneself are well documented. Sometimes the injury can be severe. There's often a fine line between tics, obsessive-compulsive behavior and sensory-seeking stimming behavior, and with him being unable to communicate, it might be impossible to really differentiate. But basically he might have Tourette's disorder along with the autism and intellectual disability.
He's on a medication for tics right now and it might be marginally effective. Hard to tell since they come and go. Unfortunately, the most proven medications for this are antipsychotics, so we may be trying another one of those soon. Besides the restlessness, I am terrified it will contribute to him developing diabetes.
And the final development. Our son goes to an autism school and has been receiving therapy there, which is mostly covered by insurance. They told us today that he needs more focus on adaptive skills training that they can't provide and insurance won't cover. That's things like feeding oneself, grooming, dressing, potty-training. They’re not kicking him out but cutting his time there dramatically. I know it's more nuanced, but it kinda feels like they're kicking him out.
I think our only option now is to get him into public school and see what they have to offer. Very terrified about the logistics of this. But this also triggered a lot of sadness with my wife and me. Logically or illogically, we're thinking things like they felt our son was too impaired to benefit from their program and insurance won't cover treatment because it's "a lost cause" and he'll never make progress, who's going to take care of him when we're gone, and no group home or facility is going to be able to handle him, etc. etc. Stuff that we try to avoid thinking about on the day to day or we'll get overwhelmed and depressed. Wife was crying earlier today and I’m not too proud to say I’ve gotten close a few times.
Spent a lot of time today trying to figure out how to find a safe place for my son to live when he's an adult and we're very old or dead. It feels really bleak. Lots of stories of extreme wait lists, underpaid, overworked and unqualified staff, abuse and neglect. No wonder I also saw a lot of stories of disabled adults living with their 70+ year old parents.
I can sense myself wanting to just go back into denial/procrastination mode for another year or so. He's 12, so there's still time before we really have to plan this out (I think). Nine years until he ages out of school at least. Wife and I will be 56 years old at that point. Sigh.
Hey gewy. You're not alone and are welcome to vent all you want. It's not easy for parents like us. I hope you and your wife are finding some time for your own self-care. I know that's a crazy thought, considering how busy and draining being a special needs parent is. We feel like we're "Always On" and never get a break and that no one around us "Gets It".
Have you made friends with other parents with special needs kiddos? We've found that to be our biggest help. Having someone physically nearby that you can share "what happened today" with has meant the world to us. Everyone has kiddos that are different and face different challenges.
The amazing doctor who diagnosed our daughter with autism gave us some pretty good advice. She said, "It's a hard journey you're all going on. You'll need people to relate to, ask advice from, and share with. Try and find these three people eventually:"
"1. Someone with a kiddo your age who is going through the same things you are right now. They're going to be your rock. Someone you can tell stories to, vent with, laugh, and cry with. You'll both be making mistakes, hitting road blocks, small successes, big successes, all of it."
"2. Someone with a kiddo five or more years older than yours. This is going to be your glimpse into the future. Someone who has seen the things you are going to come across. You can reach out to them on advice on how to do things as your kid reaches certain ages."
"3. Eventually, someone with a kiddo who is five or more years younger than yours. It's your turn to make a difference to another special needs parent. It's a great feeling when you can pass on experience and help someone that was in your shoes."
We've done this. And it has been more helpful than anything anyone has ever told us to do. The people don't have to share your exact circumstances. For example, one of our best friends that we now have, their awesome son is in a wheelchair and shares a lot of behavioral and developmental setbacks. That family has become some of our best and closest friends. We share calls, texts, facebook messages, playdates, adventures, and more with them. It means the world to us to have friends that "Get It".
If someone told me to go and do this, my first response would be, "I don't have the energy or time for that!" But you need to find time to care and treat yourself.
I don't know. I'm rambling as well. You're not alone dude.
I don't really have anything to contribute other than to simply mention that if you have to cry, then cry. And/or work space out with your wife where you can help each other cry if you need to.
That and we are here to listen.
Can you move? Just off the cuff, are there places with better care options for your family?
Thanks for the helpful suggestions and words of support.
Can you move? Just off the cuff, are there places with better care options for your family?
Yes, we can move. It wouldn’t be easy, but we could absolutely do it. And yes, there are almost certainly places with better care options. I just haven’t figured out where to find this info. It’s not like there’s a US News and World Report ranking of top group homes and living facilities, separated out by your specific needs. I’m just randomly looking at web pages and online comments and hoping to come up with some kind of promising lead. No luck so far.
It would be very helpful if we personally knew someone whose child was five years older, as astralplaydoh mentioned. The trouble is that the people we do know are in a similar boat but not the same one. Specifically, their children require much less support and supervision than ours, and often have siblings to oversee their care later in life. They have more options open to them.
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