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My brother


IrmaJean
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My autistic brother's situation just keeps getting worse and worse. It started last December when he had several teeth removed and ended up with dry sockets. Since then he has been in and out of the emergency room dozens of times from SIB and aggressive behavior. He lived at home all while I was growing up. He only showed SIB when he was in great pain and never once in the 20 years I lived with him did he ever show any aggression. He was completely non-medicated. A major handful, but healthy and happy...

This past year they have been treating him repeatedly with anti-psychotic medications, almost all of which there have been severe side effects from. Seizures, itchy skin, fevers etc. He's just been kicked out of the group home he's been in for 15 years since my mother passed away. We are powerless to stop this now. They are sending him to a more institutionalized type of setting where a young boy died several years ago. Big news story around here...My other brother has been trying to obtain legal guardianship for just about a year now. The latest piece of bad news is that the state will take over and we will lose our rights to make decisions about his care. They apparently don't like that my brother questions them so much about drug usage. But it's hard when it seems they are only treating him for the symptoms without treating the actual cause. All of his nurses at the group home insist this is pain related. And usually, once he's at the hospital, they do what they want anyhow. We've said no before and then found out he was on Zyprexa and Librium anyway. We all just want what is best for him. It's just a difficult situation right now. Next week we're going to visit this new place. I plan on making unannounced visits to be sure he's okay.

Obviously no one can ever replace a mother...

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This is heartbreaking to me. I hope one of your brothers can get gaurdionship for your autistc brother. I am not a fan of medication large amounts and high doses of major tranqulizers for people who are autistic.

It could be medical, his teeth are feeling weird to him , he is not in pain from the dental work? If this is what is causing his behaviors to intensify, then he needs to go back to the dentist, make sure he has no infection , and at least they can perscribe something that will take the pain away, if that is what the issue.

I am sorry for the death of your mother, looks to me she was the one who took all the care and resonsibility for your disabled brother. I just hate to think that he is or could end up in a insitution. WIsh he could stay at the group home ! I'd fight this tooth and nail. Autistics hate change, this is going to be tough on your brother , taking him out of the group home.

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Guest GingerSnap

IrmaJean: Call your state congressmen, all of them or email them - you would be surprised how much they can help you if they want to. Also, in our state there is a publicly funded thing called something to the effect of Disability Law Center of (My State) and they take on cases at no cost if they have the funding and decide it is worthy. I have an adult son with DS so trust me on contacting the state congressmen. If you don't get some action, post again and I'll do some research. If you pm with your state, I'll try to see if I can find something state specific but contact those congress people! I have done nothing but fight for rights and services that my son was entitled to for 23 years.

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Hi irmajean.....

I hear your frustration and worry and I understand completely what you are saying. I work in this system.

Am I understanding that he currently doesn't have a guardian? Who's making those medical decisions for him? In my experience in my state as a court visitor, the judges I've been in front of take serious consideration to the wishes of the individual and the family. And the "best interests of the individual" carries a lot of weight.

Does your state have an advocacy system for individuals for disabilities. Obtaining an advocate could help too.

My hope for your brother is that, while medication may help, they are also exploring everything else too. Medication is one of many tools that can be used to help your brother but shouldn't be used in exclusion of checking everything out. Has he ever had a sensory evaluation? Sensory difficulties are very common in people with ASD and, although not evidence based at this point, (bug every OT you know to get some research done!!) the anecdotal evidence that it works is overwhelming. I have seen many individuals with autism who self injure overcome it to the point it is almost non-existent or at least much less severe by following a "sensory diet." A qualified OT specializing in sensory disorders can help with them. It actually really does make sense!! Most of us can regulate our sensory systems on our own. We job; We lift weights; We get massages. People on the spectrum often have difficulty with this. I equate it to being on a roller coaster. It's really fun for a few minutes but they we are ready to get off. People on the spectrum often feel they are never off that coaster. But what the sensory diet can do is help them get the sensory input that they can't always get on their own. Especially hard work activities. (meaning lifting, pushing, pulling)

Also, like mscat said, make sure everything is checked out medically. Pain should be ruled out as should any other medical issues.

Hope this helps. If you want to "talk" more, feel free to PM. We could even brainstorm some questions you could ask if you would like.

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It's definitely breaking all of our hearts to see this happening with him. He doesn't speak at all so it's so hard to know what is wrong. The hospital often straps him down when these episodes happen and it is heartwrenching to watch. He seems to be going through these bad cycles over and over again and no one knows what to do. But because of all of the medications he's being put on and taken off, it becomes difficult to determine what reaction is coming from where. My father is technically still his guardian, but has had a stroke and really isn't all that capable of making decisions. They have been allowing my brother to make the decisions of late, but the guardianship process has not been finalized. Last week a lawyer called me...before I even knew we could actually lose guardianship...and asked me all kinds of open-ended questions. My verbal skills aren't the best, so I'm not sure how well I did.

N is pretty much on the move all the time so it's hard for me to imagine him being locked in a room at this new place. He likes to swing and go for walks and listen to music. I know he won't like the change. I'm just hoping this place isn't as bad as my mind has imagined it...

It's just frustrating because he was such a happy guy all while I was growing up. Not to mention that this was my mother's worst fear while she was sick.

Thanks for the thoughts and support. I'm hoping we get some answers soon as to what has been causing his difficulties. I'm also hoping this new place isn't too terrible...

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Guest FourAnchors

My heart aches for what your Brother and family are going through.

I'd like to see the doctors and nurses take a nice dose of zyprexa (sp?) and see how well they are able to function. :/

I'm sorry but Iam triggered often to see people suffer from the cookie cutter methods of treatment.

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I'm sorry for the trigger.:P Certainly didn't mean that...

that lost me :confused: I did not see anything triggereing in your post . IrmaJean, is your brother getting any type of support services throught the Regional Center? Are you in the U.S.? Because if u are he is intitled to support from the regional center. They work with families and tough decisions all the time. They want the best for the disabeld person and are wonder adovcates. They also can help with making the right plans for your brother , and offer many services.

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Guest FourAnchors
I'm sorry for the trigger.:P Certainly didn't mean that...

Oh my goodness no, you didn't trigger me!! Don't apologize!

Maybe I worded it wrong..I guess a better way of saying it

would just be that I get upset when I read stories like these where

people are treated sometimes as if they weren't human.

Zyprexa is a strong medication (IMO) and one the can make some who doesn't need it, feel completely psychotic. ;)

I just can't imagine someone like your brother who may already feel

completely helpless trying deal with side affects from medications

especially if he doesn't understand what's going on.

I'm so sorry for your situation.

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Guest ASchwartz

Hi Everyone,

Wow, we just had an excellent example of just how human communication is difficult. Four Anchors used the word "trigger" in a certain way and others responded with great concern. I understood Four Anchors but others did not, and that is just fine. It simply illustrates how we humans, try as hard as we might, have a difficult time, sometimes, making ourselves understood. It is no one's fault, it is just human. This has happened to me many, many times (and still does) as it happens to everyone.

I just wanted to point that out. People have arguments (I am not referring to this) and sometimes those arguements stem only from misunderstanding the intent of the other person.

In any case, the situation is certainly a mess and awful (going back to Irma Jean's brother) and I wonder if the family is being misunderstood by state officials?

IrmaJean, what does SIB mean?

Allan

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Allen , I am not Irmajean, however do know what SIB means.

It is "Self Injurious Behaviors"

My own son , has had some SIB , too. when it happens it is such a sinking , awful feeling, watching your own child hit himself, or bite himself. It is not uncommon behavior with people on the autistic spectrum , especially when the individual has limited speech. And struggles with controlling emotions of anger.

Developmenally Delayed individuals can also have SIB behaviors .

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Hi Allan,

SIB- Self-Injurous Behavior

He hits himself in the head. :(

I know I was likely misunderstood by the lawyer whom I spoke with on the telephone. So often when I'm verbal, things just don't come out the way I want them to. Or I could answer the questions much more adeptly if given a lot more time than is typical for normal conversations. I don't do well under pressure. I know I flubbed up that call. I was trying to explain how my brother needs someone to advocate for him... and that we would like to work collaberatively with all of the doctors involved in order to make the best choice for my brother. As opposed to just blindly saying "yes" to every drug, we would like to explore the options and understand the drugs purpose in helping the situation. It came out wrong, but there isn't much I can do about that now.

I guess I was just really hoping that anything I'd written about hadn't upset FourAnchors. I'm glad to know that it didn't.

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Four Anchors said he/she (don't know?) was triggered...

Regional Center? We're in NY in the USA. It's good to know there are places who might be able to offer us assistance with this.

Yes, the Regional center. In every county their is one. They are the ones wo work with individuals, and families who are developmentally disabled, they have services , and each client has a case manager. Autism, mental retardation, anything of this nature.

They support all ages , and it makes a huge difference to have them involved .

I highly suggest that you find yours in the county you live in and call them. They can assist you further, give the support that you need, and the family member. They will know how to handle these issues , and are strong advocates for disabled individuals, in all areas of life, & making certain that the disabled individual is getting the support services, + needs met .

Best wishes ,

mscat

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My brother and I went to the meeting concerning my brother with autism earlier this week. We met with about a dozen people about how to best help him and make this move to the new place go as smoothly as possible. In listening to his caregivers from the group home he is currently in and psychologists and administrators, it becomes very clear just how complex and sad this situation is. Everyone seems very nice and wants to help him, but doesn't know exactly how. I was encouraged to learn that this new place is considered a temporary place for him to go for the purpose of better understanding and managing the crisis he has been in. My verbal skills being slow (as usual), several hours after leaving many thoughts came to my mind.

What exactly is the problem right now with N? SIB behavior. I'm thinking now that he has adapted this way of managing both outside and inside stressors. It probably started with pain, but has become a compulsion of sorts to cope with just about anything which is unpleasant to him. I think one really has to get down on his level to better understand. According to evaluations, his mental capacity is only that of a 28 month old. So maybe a thought pops in his head which is disturbing (possibly remembering what has happened to him over the past year)and he self-injures to combat it. Once the SIB started very suddenly in the middle of the night, so perhaps there is PTS involved as well. Something triggers him, reminds him of something unpleasant, and he begins the SIB once again. It is a vicious cycle. I think maybe I would like to ask his caretakers if he seems to get any relief from the SIB or does it just escalate out of control. So now he has conditioned himself to respond in this manner and maybe needs to relearn how to manage stressors in a different way. Just thinking out loud. I think I'm going to try speaking with his doctors again.

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If your brother is nonverbal, SIB , is a way to release unexpressed anger , and frustration. He has no other way to do this, other then to SI. I strongly urge you to get into contact with your local regional center. They can provide direct services , including, behavirol intervention .

I have seen many kids/children with different levels of autism. My son, being on the ASD too. He is higher functioning, but they say he has cognitive delays. Even he has hit himself in the face before! Now, he is quick to anger, and kicks, or pounds on walls. He is a big 16yr old boy too.

I don't want to have to medicate him. However, it has been suggested to do so. It sucks to even have to think about it! I do not want him lashing out, or one day even on me. That is my biggest fear!

I hope your able to contact the Regional Center, and get more support through their services too. Looks like their is a team already handeling your brothers care.

However, I know for a fact that the regional center specializes in autism, and it does not matter how old the person is.

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  • 2 weeks later...
  • 3 months later...

I wanted to update on the situation with my brother. He has been moved into a new facility and seems to be thriving there. :) The doctors there tried giving him narcotics when he began to self-injure and it has apparently worked. This is something which we suggested long ago at the group home he had been previously living in, but they refused to even try it. So, as all of us in the family thought all along, the source of his aggressive behaviors was pain. They are thinking from the procedures with his teeth. But anyway he is doing great and is back to his old self. Very welcome news.

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This is wonderful news, Irmajean :) I am so glad your brother has settled down at his new place, and the people are taking good care of him.

Now that your other brother has legal gaurdionship he has family to oversee his needs and to make sure he is doing well.

my son is 16yrs old and autistic, he has cognitive delays, but is higher functioning, he's verbal. In anther 2 yrs i will have to establish legal resonsibilty over him as well . I am planning on keeping him with me, and placing him in a day program where he will be busy .

I already know I will have to move to a bigger city, Fresno , so he can have the services he needs. He can stay in school until 21 through the Special School for people with disabilites , however, I may move sooner than that.

My son is a big kid, and one of my biggest worries is if their will come a time where I won't be able to control him anymore. In that case he would have to go to a group home or something for adults.

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