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.
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.
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. (-:
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."
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?