Down Syndrome Help!

WhatToDo · Mar 24, 2005

I may be comparing apples to oranges, but I worked with an 8 year old that had cerebral palsy for over a year. He never hit or pinched me, but he was often reluctant to do anything, therapy, swimming lessons, homework, etc. and he would throw huge fits whenever he didn't get his way. He still goes to the bathroom in his pants at least once a day and pees all over the outside of the toilet (despite putting up support bars around the toilet). I used to get so frusterated that I would lock myself in the bathroom for a few minutes to calm down.

The one thing I found that worked was implementing a "points system." Basically you just have some sort of dry erase chart and you put several behaviors on it (like not hitting or pinching, brushing teeth, using restroom alone, eating vegetables, whatever) and make them worth a certain amount of points, and then when the child reaches a certain amount of points they get some kind of reward. This worked great with this child, I had few problems with him after that.

I also left the room or ignored bad behavior until the screaming and crying subsides.

LydiaNN · Mar 27, 2005

I gather you live in Indianapolis since you refer to Riley (Riley CHildren's Hosp?). If that is true, I would suggest he get more of a referral to a child psychiatrist who deals with these issues. I'm unsure why there is home health? Is he manageable in the home? I know parents certainly wouldn't want to consider it, but there is a nursing home for kids in Shelbyville, IN a few miles outside of Indy. I did my ADN at Marian College and did some clinicals there. Good luck...personally, I would never tolerate being hurt at work, but that is just me. I think you are a saint to tolerate it.

Never mind... I thought there was only one page of responses, and missed the part where you said that you have had training. OTOH, I'd love to know what the person who told you that "98% of it is behavior" is talking about. Of course it is behavior, but it is behavior associated with impairments in cognitive and adaptive functioning. Those limitations are part and parcel of the disabilities. They need to be addressed, but it isn't realistic to hold these children to the same standards as typical children, especially when we aren't providing near the level of support that they need. These are not uncommon behaviors in children with these conditions. I

lady_shark44 · May 14, 2005

Autistic individuals may be laughing on the out side and actually crying on the inside. You can't judge their reaction to a situation by facial expression or laughing or crying.

Carlos Casteneda · May 14, 2005

Hello-
I didn't know whether to post this here or the HH Nursing..so I'll just see how it goes. I just started Home Health Nursing and I love it. My main case is a 9 year old boy with Down Syndrome and Autism. I love him to death but there is a little bit of a problem...behavior. He'svery mentally handicapped but still able to use sign language so I know he somewhat knows what's going on. He's constantly biting, scratching and pinching. He is INCREDIBLY strong for his size. I've left there with bruises that cover the width of my arm and scratches everywhere. We've tried putting him in "time out" but that's becoming ineffective. It all seems to be a big game to him. Another thing...he's his mother's baby...she babies him all the time. Time out is basically the only punishment he has...and then she tells him "good boy" whenever he gets out, which totally defeats the purpose. I will be honest..one time when he pinched me I smacked his hand..not hard or anything, I wasn't abusing him but more like self-defense. His eyes got big and he stopped for a while. So I questioned the mom asking if that was a technique that we could try and she said "Oh no, I don't like that...some people might not know what a light smack is." So basically all the nurses are between a rock and a hard place. He KNOWS what's going on...he laughs everytime he does it and laughs even more when I sign "that hurts!" I know I sound mean, but he honestly knows enough to know the difference between right and wrong. Discipline is the major part..so anyone have any similar experiences or have any suggestions? Any will do...I'm so frustrated...I look like I've been beaten. Some of the nurses have demanded raises for taking care of him, myself included. Any help...please?

its easier to suggest strategies than it is to deal with that sort of situation, sometimes rewarding good behaviour and ignoring bad helps but the mum has to be educated to be consistant otherwise its a waste of time sometimes confiscation as a punishment works where the items confiscated can be returned to reward good behaviour, as far as health and safety of yourselves is concerned, in uk people who have a history of violence towards staff are generally cared for on a two staff to one patient basis but it depends on where the funding is coming from good luck

jpennybaker · May 16, 2005

I have several years of experience in dealing with people with Down's. I also have several patients with Autism. I am glad you are trying to hire a behavior consultant. Because all behavior is learned; therefore all behavior can be unlearned. I also advocate for a neuro/psych doc if you can find one. The intricacies of brain function in the two disorders make it hard to differentiate what is behavior and what is not. Also people with Autism ARE quite unaware of how their behavior affects others.

It may be that this is not the kind of case you need to work on. Especially when you talk about tapping his hand. Believe it or not that can be construed as abuse. Simply not appropriate to strike a patient in any way. We are their caretakers not their judges or their parents. I think this challenge may not be a good fit for you. Anytime there is a power struggle no one wins. You are not going to be able to make him do anything. But, he sounds like my kind of challenge....wish I was there.

NicInNC, CNA · Jun 14, 2005

I may be comparing apples to oranges, but I worked with an 8 year old that had cerebral palsy for over a year. He never hit or pinched me, but he was often reluctant to do anything, therapy, swimming lessons, homework, etc. and he would throw huge fits whenever he didn't get his way. He still goes to the bathroom in his pants at least once a day and pees all over the outside of the toilet (despite putting up support bars around the toilet). I used to get so frusterated that I would lock myself in the bathroom for a few minutes to calm down.
The one thing I found that worked was implementing a "points system." Basically you just have some sort of dry erase chart and you put several behaviors on it (like not hitting or pinching, brushing teeth, using restroom alone, eating vegetables, whatever) and make them worth a certain amount of points, and then when the child reaches a certain amount of points they get some kind of reward. This worked great with this child, I had few problems with him after that.
I also left the room or ignored bad behavior until the screaming and crying subsides.

That's EXACTLY what I was going to suggest. My now 5 year old used to have THE worst behavioral problems. There's no health problem with her either...she was just MEAN! I tried spanking, time out, taking toys away, etc. NOTHING worked.

Finally, I started a token system with both of my kids. You can use poker chips, marbles (as long as the child knows not to put them in their mouth), etc. When my children brush their teeth without asking, clean up their rooms, clear off the dinner table without being asked, etc....they get a token. Bad behavior means they lose a token. If they are bad, they lose a token. If they argue, they lose a token. Good grades on their progress reports, EARN a token. And so on. Once they get 20 tokens, they get to pick out anything they want from the Dollar Tree. It took over a MONTH for my youngest to get 20 tokens!

The system has worked WONDERS. She is like a new kid. When she looses a token, it's like the end of the world to her. I would recommend ALL parents/caregivers try this system before giving up.

nurse_wannabe · Jun 14, 2005

Finally, I started a token system with both of my kids. You can use poker chips, marbles (as long as the child knows not to put them in their mouth), etc. When my children brush their teeth without asking, clean up their rooms, clear off the dinner table without being asked, etc....they get a token. Bad behavior means they lose a token. If they are bad, they lose a token. If they argue, they lose a token. Good grades on their progress reports, EARN a token. And so on. Once they get 20 tokens, they get to pick out anything they want from the Dollar Tree. It took over a MONTH for my youngest to get 20 tokens!
The system has worked WONDERS. She is like a new kid. When she looses a token, it's like the end of the world to her. I would recommend ALL parents/caregivers try this system before giving up.

Hey, that's a great idea! I had a dry-erase board stuck to the fridge with certain chores listed, and how many "stars" each was worth, but it never worked. I think it would be much better if there was an actual tangible token that could be given or taken away. My son is 7, has no medical problems, and is USUALLY pretty good, but lately his behavior and his schoolwork seems to be on a downward spiral. I'm definitely going to try it before he gets too out-of-hand!

And to the OP, I don't see you as a bad person or a child abuser at all. I probably would have had the same knee-jerk reaction, because there is nothing that I hate more than being pinched. Maybe I'm from the old school, but if any kids in my family bite or pinch they are going to get bitten or pinched back, and I guarantee you they will never do it again! I know that is probably going to generate a lot of nasty replies, but in my opinion it is better to show the child how it feels to be bitten or pinched and them stop than to have them going around causing injury to other kids, pets, and adults. Of course, I would never do this to a patient, just my own kids/nephews. I think the only way this situation will ever be remedied is if the mother steps up to the plate and finds some kind of punishment that works. If she refused to do that, I'd be outta there. Best of luck to you!

NicInNC, CNA · Jun 14, 2005

Hey, that's a great idea! I had a dry-erase board stuck to the fridge with certain chores listed, and how many "stars" each was worth, but it never worked. I think it would be much better if there was an actual tangible token that could be given or taken away. My son is 7, has no medical problems, and is USUALLY pretty good, but lately his behavior and his schoolwork seems to be on a downward spiral. I'm definitely going to try it before he gets too out-of-hand!
And to the OP, I don't see you as a bad person or a child abuser at all. I probably would have had the same knee-jerk reaction, because there is nothing that I hate more than being pinched. Maybe I'm from the old school, but if any kids in my family bite or pinch they are going to get bitten or pinched back, and I guarantee you they will never do it again! I know that is probably going to generate a lot of nasty replies, but in my opinion it is better to show the child how it feels to be bitten or pinched and them stop than to have them going around causing injury to other kids, pets, and adults. Of course, I would never do this to a patient, just my own kids/nephews. I think the only way this situation will ever be remedied is if the mother steps up to the plate and finds some kind of punishment that works. If she refused to do that, I'd be outta there. Best of luck to you!

Yeah, I used to have a chart, and that just didn't work. But her actually SEEING me take away a token or adding one works great. They each have a cup with their name on it that I put the tokens in. I also keep them on top of the fridge so they can't reach them and add to them when I'm not looking. Every couple of days, they ask if they can count how many tokens they have. The closer they get to 20, the better they behave.... :rotfl:

Once they hit 20 and go to the Dollar Tree (kids LOVE that store and best of all, it's CHEAP!), we start over.