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Discussion Starter · #1 ·
For those of you who were so kind when I was venting about my son who is autistic and had been having some behavior problems at his group home, I just wanted to let you know that the lady who helps him communicate with a keyboard is back from vacation and we went over to the house a couple of days ago. As we had surmised, the behavior is of course coming from the fact that he does not communicate verbally and the staff at the home just don't really understand him. Part of what he typed was "I am damn (damn seems to be his new favorite word) tired of being tread like I'm stupid." He apparently is unhappy that they don't allow the residents (at least the non-verbal) to have any input in the running of the house. He said/typed "I need to do shopping, I must create my damn list for shopping, I must create my own lunch menu one day. The staff do all the shopping." Toward the end of the session he typed "I am tired being treated like I am smart. I am autistic, not retarded. Autistics are smart people. Darn hard not being understood in your home. Saying words makes people treat you good, but being silent makes people think you are stupid."

At this point he was tired and didn't type any more. Facilitated communication is a very time consuming, tiring process for him. It's a controversial method that some people discredit, but that many autistic people and people with other disabilities use.

I just wanted to let you all know that I am working on trying to improve things for him but it isn't easy because the staff at group homes seem to have a set mentality that they are more or less just babysitting the residents even though the residents, like my son, are grown people (he is 46). It's hard to get through to them that these residents are actual people, not just people who need to be warehoused.

Thanks again for all your concern.
 

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I would think that these so called " babysitters", as they think of themselves , would have training in this area. I worked in a nursing home for over 30 years. We had to go to in services all the time. Everyone is an individual and has different needs. They should be taught this. This really bothers me that they get away with this.
Hope it works out for you and your son. Is it possible to move him to a more caring facilities? A place that gets the proper training.
 

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I do not know where you live but different States have different policies for the Care in group homes.
I am a retired Nurse on the Human Rights Committee (volunteer as a medical person is required) for a local group who manages group homes and work related programs. I see so much done to enable these Individuals to function at their maximum level. There is a lot of education for Staff and there are well qualified Supervisors. Each of us has to visit so many homes and work sites. They have a plan for each individual that is followed and changed as needed.
In Massachusetts this type of care is not unusual. I also Volunteer for our Health Department at the Flu Clinics and one day we give Vaccines to Individuals at a work site sponsered by yet another group and the same things are going on.
Please call the Department of Public Health in your state. Your Son is lucky to have parents that are on top of things.
 

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I am so sorry for your son. I just retired from a company that houses group homes and singles homes for physically and mentally disabled people. Yes some or most of the employees treat these people in a rude manner. Even though there are in service classes you take once a year it doesn't help. My company is run by community mental health and he would hire people in and throw you in a program with no training. Just instruction what to do. They would bring someone in that is trained to pass the meds until these employees were certified to pass the meds. I had seen young people come in that was fresh out of high school or summer job until school went back in in the fall thinking this was a cinch of a job and could sit on their behinds doing nothing. Their way of dress was very revealing for that type of job and we did have men that loved those shifts when they came in. I wish I lived closer to you and I could work with your son. Sounds like there is no compassion where he is at. Give him a ((((((hug))))) for me please.
 

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Joanne Hyde said:
I do not know where you live but different States have different policies for the Care in group homes.
I am a retired Nurse on the Human Rights Committee (volunteer as a medical person is required) for a local group who manages group homes and work related programs. I see so much done to enable these Individuals to function at their maximum level. There is a lot of education for Staff and there are well qualified Supervisors. Each of us has to visit so many homes and work sites. They have a plan for each individual that is followed and changed as needed.
In Massachusetts this type of care is not unusual. I also Volunteer for our Health Department at the Flu Clinics and one day we give Vaccines to Individuals at a work site sponsered by yet another group and the same things are going on.
Please call the Department of Public Health in your state. Your Son is lucky to have parents that are on top of things.
That's how the company I worked for is suppose to be run. Bit these programs have inadequate staff. Excuses are made when a pop visit from community mental health pops in. The whole thing is disfunctional.
 

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I surely feel for you. It's really tough when our loved ones are treated poorly. I've had no experience with anything like this but surely there is a state agency who oversees this type of home. I'd certainly talk to them about the situation your son is in. Perhaps they can either provide more and better training for the personnel already there. Or if the current personnel is not open to better training then replace them. It's not fair to you or your son to go through this.
 

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My heart goes out to both you and your son. It is definitely faster and easier for the staff to treat him as if he had no communication skills. How sad for your son.
I know very little about his condition, but by chance, would there be an organization or appeals board you could approach for advice. It is not at all fair that he is treated this way.
Please keep us up to date, I am very interested, also because this is all harts of human rights
 

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Discussion Starter · #10 ·
Sagarika said:
PLEASE consult somebody, who has specialised in dealing with autistic people.Your son is BRIGHT, but unable to communicate. With special help, he can function very well.
I'm sorry to sound a little angry at you Sagarika, but do you think that in the 46 years of his lifetime I/we haven't consulted everyone imaginable about him? I can't tell you how many specialists, clinics, hospitals, mental health agencies etc., etc. I have seen and the amount of money that has been spent on tests, therapies, special programs, none of which were paid for by insurance when he was young. If he were a child now, things would probably turn out differently but when he was in school there was not even the attempt to teach him to read, although he does read, but is self-taught. Believe me, I know how bright he is. I am not in a position for him to live with me now and the services in Virginia are quite poor for disabled adults like him. If I move to another state I would have to start the process of getting funding all over again. It took me five years to get him on a Medicaid Waiver here, it would take that long again and I'm not getting any younger. When he was 7 and first diagnosed we were told by three doctors to find an institution for him and walk away. Needless to say, we did not do that, but it has been a long hard struggle. If he were a young child now things would probably turn out differently, there are many more services than there were back then but still inadequate services for the adults.
 

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sam0767 said:
That's how the company I worked for is suppose to be run. Bit these programs have inadequate staff. Excuses are made when a pop visit from community mental health pops in. The whole thing is disfunctional.
Agree with you here....a different country, a different situation but it sounds soooo familiar. My situation is that mother is in a nursing home, she has Alzheimers to the extent of being completely unable to do anything for herself....just lies in a wheel chair all day. She can't speak, communicate, sit up, eat regular food - essentially she's like a newborn infant in a 96 year old body. I often see how the staff just rush through her care because of her non-verbal situation and can't make any requests. It would be worse if I didn't visit mother 3- 4 days weekly and befriend the staff....from the lady who washes floors to the staff nurse. Shouldn't be this way but sadly, it is.
 

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Thats disgraceful and has made me so angry.
I think I would be inclined to involve the local tv company, see if I could get them to do a documentary on the place and make sure they see the letter your son typed. I would also make sure the homes management and whoever they get their funding from see it too.
 

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Your sons letter reads with honesty and true frustration. And Tove is right about befriending the staff. Shouldn't be that way but it is.
Few people apply for those jobs that really want a career in that arena, that sometimes includes hospital workers too. Unfortunately nurturing starts at the knee and some employees have not a clue. What does help is role playing. Tape someones mouth shut for the day and see what happens, add in low self esteem and shyness and see what becomes to that individual.
Work towards a camera in the house, nothing like being caught on tape being abusive, and ignoring him is abusive, or not doing the mandated job. Employers just do not have a wide scope to chose from and a warm body constitutes meeting minimal staff requirements. But they do respond to fines, their pocket book or the threat of losing their license often dictates change.
Remember when Gray Power came into being and the elderly problems brought to public attention, things started towards the good for programs for seniors. And what is scary to me is this is the new generation that will be responsible for our care in those situations in 20 or less years. We must be proactive in all phases and all conditions. Use the Public Health system and your Congressman/woman. Heraldo Rivera exposed nursing home horrors years back, it was so disturbing to me I could not sleep for many nights. Our biggest solution is to live in a smaller community and be proactive within some designated organizations. Not all can do this so it is imperative to research options ahead of need.
Unfortunately the need is greater than the system is able to accommodate economically or prepare for in a timely matter.
 

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flhusker said:
I surely feel for you. It's really tough when our loved ones are treated poorly. I've had no experience with anything like this but surely there is a state agency who oversees this type of home. I'd certainly talk to them about the situation your son is in. Perhaps they can either provide more and better training for the personnel already there. Or if the current personnel is not open to better training then replace them. It's not fair to you or your son to go through this.
In my state there are less state workers than programs. With the company I worked for unless the owner of the company got a bad name or one of the workers caused a problem for the company the owner could care less. I was falsely accused of something and the boss got on me so bad I almost quit on the spot. In our case the consumer has rights. But in this instance with your son his rights it seems has not been met. You can report this to his caseworker or state agency. In a round about way this can be considered mental abuse or neglect.
 

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I just read an article in the September issue of Good Housekeeping Magazine starting on page 165 about a father finding help for his autistic son through Minecraft. I know your son is grown and the boy in the article is now 10 years old, but it might be something that can help an adult, too. In the article, the father explains how Minecraft is a bright, nonthreatening world full of animals and silly things to do. Its digital universe helped his son to navigate his scary real one. He said that Minecraft is a lot like playing Legos on screen. It allows the user to build, mine for gold or explore hills and valleys as the sun rises and dips in the clear blue sky. It is quiet and it allows you to create very exact and interesting things and then blow them up. His son was instantly hooked. Minecraft was a game seemingly designed for his needs. He was in total control. He said that it was beautiful to see his son who was usually so guarded, careful and anxious, being loose and creative, an attitude that began to edge over into real life. Even though he played only an hour or so every other day, he made progress quickly. After a few weeks, his son started drawing more and made up stories about the game and his vocabulary widened. What this man learned with his son is that games can offer a form of freedom for kids who find the world difficult and confusing.
 
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