Maine Vaccine Exemption Removal Bill Moves Forward
New Jersey preschoolers have highest autism rates ever in the nation

Physician, Father and Caretaker of 29 Year Old Autistic Man Found Brutally Murdered

Weep"One family member said Derek “can be violent and has attacked Rex in the past,” court documents stated. The family member also said Derek’s mother had died years ago and Rex was taking care of him alone."

This grisly story offers another side to the shiny, happy portrayal of autism during the month of April. A Spokane, Washington widowed physician, age 61, was found brutally murdered and his 29 year old, preverbal autistic son living amid squalor. It appears that the son is at least, a suspect. If not, he is also a victim, left alone in the home without life skills.  Either version is a far cry from what we're spoon fed about autism. This kind of tragic story is going to repeat itself over and over, like the stories of autistic children wandering and drowning. Parents will age. Strong adult men (and women) with autism will rage. The future may be bleak and harsh. Meanwhile, we're told we are "allowed" to seek awareness, but not cure or even true treatment. Our loved ones must suffer a lifetime of... autism.  God bless Dr. Rex Porter and his son Derek.

###

Detectives are investigating the death of a retired Spokane anesthesiologist whose body was found dismembered and burned in the backyard of his Dishman Hills area home.

The victim, Dr. Rex C. Porter, 61, previously worked for Providence Sacred Heart Medical Center. He was the caretaker of his son, Derek C. Porter, 29, who is autistic and nonverbal, according to court documents. They lived on an 11-acre property in the 2800 block of South Park Lane near the Iller Creek Conservation Area.

On Saturday, a neighbor called 911 to report that Porter’s car had been sitting in the driveway for two days with a door open. A garage door had been left open, too.

Spokane County Sheriff’s deputies responded Sunday to the house for a welfare check, according to a search warrant filed Tuesday in Spokane County Superior Court.

Deputies reported seeing the house in disarray as they looked through the windows, including broken glass on the floor. Attempts to call Rex Porter were unsuccessful, prompting deputies to enter the house. They smelled a strong odor they believed to be animal feces, according to court documents.

Deputies continued their search downstairs to the basement and found more glass, along with blood and damaged items. They opened a door and “suddenly an adult male was standing in front of them with only shorts and a T-shirt,” according to court documents.

Deputies detained the individual, believing he was squatting in the house, according to court records.

In the bathroom, the toilet was full of feces and the sink held what deputies thought was the remains of a dead animal, court records stated....  Read more at Spokesman.com

Comments

Grace Green

Mr. Dead Weight,
You're dead right about social services - when I had a home-help I caught her cleaning the toilet from the dish-washing bowl! Of course she denied it, along with all the other threatening things she'd done, but after a complaint I got a new home-help. Yes, I live independently, but I have my son with me, who looks after me, provides financially from a part-time self-employed business, and I look after the home. But it's a struggle. What does one have to do to let Them know how bad things are? Well, I've tried refusing to co-operate in any way with the authorities, as has my son, and refusing to pay eg. council tax. There are those here who have said we'll have the bailiffs calling, but it hasn't happened because They know what I will say in court, and They are now terrified of us! So my answer is, when you have absolutely nothing left to lose, as seems to be your situation now, then They have lost. Go on the attack.

Dead Weight

Let me be clear: this situation with my son will be much better when he moves out. As mentioned previously, "my passion, sense of humor, hope for the future and sanity will return. And maybe all the frustration, anxiety and guilt will leave, too" when he moves out. (Or one of us dies; just sayin'.)

So when the Powers That Be do not deign me with the gift of group home residency for my son, what actions would get them to see the seriousness of the situation here?

Jeanne J

Dear Dead Weight,
I am the mother of a 23 year old young man with autism. He is largely non-verbal. Although he has self-care skills (thank you Lord), he is not cognitively able to care for himself. For example, he has to be prompted each time we walk across the street to look up and watch for cars, which is why we never allow him to cross alone. I am a retired occupational therapist, and worked for 36 years in special education working with elementary aged students with autism, on the more severe end (my son once attended my school). I just wanted to let you know, I can fully empathize with your pain. I don't know all of what you have tried, so forgive me if my suggestions aren't helpful. Your son should qualify for SSI, which is not based on anyone's income, but his own. The social security office will often not tell you, but if you say you are charging him rent, you usually are able to qualify for the highest amount that they give. Next, if you are retired and qualify for social security benefits, he, as a disable adult, should be able to receive up to half of your social security benefits. This is SSDI. All you need is a copy of his birth certificate for him to qualify under you. If your deceased wife qualified for social security, he should be able to receive benefits under what she put into the system under SSDI. Same birth certificate only needed. It is not a lot of money, but it is a monthly source of income, none the less. You are in my prayers.

Dead Weight

@ Beleaguered Autism Mom:

"I learned the golden rule as a child - do unto others, as you would have done to you. If roles were reversed and I was the child with brain damage instead of the parent, I would expect love and the understanding that I didn't choose to be uncommunicative and unemployable. If you can't cope, seek help now. Do not wait."

Wise counsel; thanks.

Dead Weight

I am glad to hear from others who have similar and even not-so-similar situations (Angus Files and Grace Green, most recently). These return comments remind me that I have much for which to be thankful (although it's not so easy to see them every day). And I am thankful for much of what I have...and for much of what I don't have.

To Angus Files:

"Dead Weight if you were to say not on here but what area you are in and Im` sure someone would be able to find a bit of support for you within AOA."

There's a long story behind my real response to what you've said...too long for here. Truth be told, I'm not averse to getting help, but I am averse to having someone other than family and friends provide that help.

Now, I suppose that sounds rather foolish. And maybe it is. But how is it that my own family, and those who I once considered friends, are nowhere to be found? I mean, there's the saying "blood is thicker than water." This has historically meant that family will be there for you...wherever, whenever and whatever. So, yeah...where are they? And friends? They're friends...because...we can depend on them to be there for us, right? So where are they?

My point? I'm holding out hope that at least one person from either group will step forward. I should say, "was holding out hope...." But, I ran out of money, was on the verge (and still am) of losing the house, having electricity cut off and being unable to pay various bills. So what remains, right?

TAXPAYERS. They're like the best friend forever, right? There ought to be a motto...something like: "Taxpayers: for when your friends and family are just another group of strangers."

"Were in the same fix as you,but fortunately I still have my wife.Goodness knows what will happen when one of us goes because hes too much for one to manage.We tried that, with one of us holding down a career.The other one left at home.The one at home ended up on anti-depressants."

I hear ya. I’ve read that the divorce rate for couples having at least one disabled child is like 70% or something. Someone should start a list for deaths of couples having at least one disabled child.

“My son has no care plan we look after him 24/7 with nil support mostly our old family and friends gone apart from our true friends and real family.Even then we dont ask for any help but its good to get a phone call or a visit just to make us feel were still normal.”

I would be hesitant to ask anyone to help with my son, even under the best of conditions (clean, fresh diaper, fed...etc.). And I feel the same way about “trained personnel.” Truth is, I have found a lot of untrustworthy, unscrupulous and unprofessional people in my area. If I were to have someone here, I’d truly be nervous that they’d steal something or otherwise snoop around where they don’t belong.

“Last year we were told to try and have a support carer and all that goes with it employment law,contracts, etc etc .We soon found out that with a support carer we were looking out for even more people and the paperwork quadrupled,we were far worse off and running on empty whereas the way we are we can sustain the drain.”

What I don’t want, especially from someone that’s been hired by an outside entity (government, etc.) is them reporting me for doing something that they disagree with, or something about which they are unsure. So, what do they do? They go and report you for . Nope. Not going to do that. I have enough challenges without having to go through what that all would likely entail.

(I had to go through that 2 years ago when Social Services came to my house to look in on a “vulnerable adult.” That “vulnerable adult” was my dying mother, who I had moved in with me and was caring for as best I could. I was single at that time too, so I was trying to locate a female who could come in to tend to my mom’s personal hygiene. Well, I couldn’t get anyone to commit. So, I ended up having to do some of that myself. (Not pleasant on several levels.) After I did get an agency to come in and help, I got a visit from Social Services. I suspect it was the agency. But it was oxymoronic, because I had been trying to find someone (and did, eventually: them). The agency stopped working with me, saying that it was an unsafe environment. Meanwhile I told the Social Services woman to get off my property. (I did not let her into the house.) Later, after my mother passed away, I called that Social Services woman and told her pretty much to take a flying leap, and, oh...by the way, my mother is dead. So, yeah...I’m not interested AT ALL in having anyone coming here, snooping around and trying to make trouble or whatever.)

“We went for an expensive family meal two years ago the first in 13 years that was my sons 21st and we enjoyed it-just like old times.”

Man, that sounds nice.

“One of my friends whose wife left him with the autistic child and her other normal son -she just walked on valentines day.He was left leaving his job that he had been in for 25 years to look after his son.He looked after him alone for 6 years.”

It is not easy for couples. She was probably at home with the boy while he’s out trying to earn money to pay bills. She’s stressed to the max, and then he comes home and tries to de-stress her, and then they both end up stressed. A vicious cycle, I think.

“Glad to say he met a lady at an autistic meeting that he managed to attend and he ended up marrying her.He has a very low functioning autistic boy/adult and the lady he married had a daughter of similar ability.I would not have thought it possible but never give up as you dont know whats just around the corner.”

I think that if I were in a position to marry again, my son would have to be out of the home. I don’t know that for certain, but I think so.

Interesting side note: I remarried a little over a year after my first wife passed away. I told this woman that my son was disabled – she even met him once – and that my intention was to bring him home to live full-time with me/us. She was on board with that, at least I thought she was. Long story short, about one year later I had her move out, and six months later we were divorced. So, yeah...have strong doubts about a marriage working with even one severely autistic kid in the mix. I hope it works for your friend, but I’m thinking...not for me.

“eople dont get going to the loo and having your autistic within hearing distance or visible of course after checking all locks are in place-we do on here.”

I get it. I definitely get it.

Thanks for the comments and encouragement.

To Grace Green:

“I am myself autistic and that has caused a lifelong struggle for me. I've been totally unable to obtain any services or support (here in the UK) so much so that in other threads many here have been unable to believe me.”

Are you living independently?

“Hence my different tone of reply to you compared to Hera's!”

I appreciated the comments from both of you.

“Also, as the psychologist Uta Frith wrote, autistic people do not have the self awareness to suffer from mental illness.”

Very interesting. I had not heard that. Sounds like a corollary to that Garfield cartoon I referenced prevously. Maybe Garfield was kinda right.

“...autistic people do not have the self awareness to suffer from mental illness. That is the case for me, so I'm unable to understand it, and particularly to understand why people get help when they have a mental illness, but not if they are suffering all the deprivation you are without becoming mentally ill.

In my case, I did my best to avoid adding to the U.S. National Debt. (Yes, given that the national debt is upwards of $45,000,000,000,000 (TRILLION), $500,000 is a drop in the bucket. Still, I’m trying to do my part.) So that’s partly why I made reference to that $500,000 earlier.

But beyond that, here in the States the federal government has no Constitutional authority to be doling out taxpayers’ money for medical care, social services...well, it’d take me less time to tell you all the things they ARE allowed to do (10th Amendment). The States, however, have no such rules from the national Constitution. Anyway, my issues with how things are done here are many; not part of this conversation.

Bottom line is this: if the federal government isn’t already funding it, it probably soon will be. (However, the late Margaret Thatcher once lamented, “Socialism works really well until you run out of other peoples’ money,” bringing a small dose of reality to a government and their people, both of whom want the Feds to be “Our Father, who Art in Washington, D.C….”)

“So maybe I'm not the best person to advise you….”

Maybe not. But, on the other hand, maybe.

“...but I do think the issues you have raised deserve much serious consideration by society.”

Thanks.

“I do hope you get things sorted out soon,...”

Appreciate that.

“...and please do, when you can, comment here again.”

Delivery made. :)

Sorry for the dreadfully long post(s). If some would desire it, we could move the conversation to either e-mail or chat. I’m on MeWe, Diaspora and Unseen (not Facebook).

P.S. Earlier I stated the following: “His room here stinks of urine and feces, and that's WITH a high-quality HEPA air filter running most of the time -- once I get in there I usually turn on the air freshner;” I want to clarify that. Not being funded by taxpayers or someone generous wealthy person, I don’t change his diaper every time he poops or pees. I try to get the maximum use out a diaper, so that’s the deal there. Also, I don’t bother with the ring in the bathtub. It’s rather like the TP holder and the faucet: why bother when it’ll be back to “normal” in a day or two?

Beleaguered Autism Mom

Dear Dead Weight, https://www.larcheusa.org/
I learned the golden rule as a child - do unto others, as you would have done to you. If roles were reversed and I was the child with brain damage instead of the parent, I would expect love and the understanding that I didn't choose to be uncommunicative and unemployable. If you can't cope, seek help now. Do not wait.

Angus Files

Dead Weight if you were to say not on here but what area you are in and Im` sure someone would be able to find a bit of support for you within AOA.Were in the same fix as you,but fortunately I still have my wife.Goodness knows what will happen when one of us goes because hes too much for one to manage.We tried that, with one of us holding down a career.The other one left at home.The one at home ended up on anti-depressants.My son has no care plan we look after him 24/7 with nil support mostly our old family and friends gone apart from our true friends and real family.Even then we dont ask for any help but its good to get a phone call or a visit just to make us feel were still normal.Last year we were told to try and have a support carer and all that goes with it employment law,contracts, etc etc .We soon found out that with a support carer we were looking out for even more people and the paperwork quadrupled,we were far worse off and running on empty whereas the way we are we can sustain the drain..So back to just us.We dont have a plan or go out for meals or hardly anything with self in it.We went for an expensive family meal two years ago the first in 13 years that was my sons 21st and we enjoyed it-just like old times.One of my friends whose wife left him with the autistic child and her other normal son -she just walked on valentines day.He was left leaving his job that he had been in for 25 years to look after his son.He looked after him alone for 6 years. Glad to say he met a lady at an autistic meeting that he managed to attend and he ended up marrying her.He has a very low functioning autistic boy/adult and the lady he married had a daughter of similar ability.I would not have thought it possible but never give up as you dont know whats just around the corner.If there are any groups for adults with autistic s where the parents attend with there children it will be a big haul for you but sometimes just a chat and a talk with others helps a lot.I know it keeps us sane a bit attending the various groups not that we have been able to maintain going but picked up info chatted etc..As you have seen on here were mostly all walking the walk with our autistic`s who we love to bits as you do your son.People dont get going to the loo and having your autistic within hearing distance or visible of course after checking all locks are in place-we do on here.

God Bless

Pharma For Prison

MMR RIP


Grace Green

Mr. Dead Weight,
Thank you for taking the time to reply to my comments. Yes, I do agree with you, and I agree with what you have replied to others also. I have a problem which others here may not have. I am myself autistic and that has caused a lifelong struggle for me. I've been totally unable to obtain any services or support (here in the UK) so much so that in other threads many here have been unable to believe me. Hence my different tone of reply to you compared to Hera's! I assume that no help is ever given. Also, as the psychologist Uta Frith wrote, autistic people do not have the self awareness to suffer from mental illness. That is the case for me, so I'm unable to understand it, and particularly to understand why people get help when they have a mental illness, but not if they are suffering all the deprivation you are without becoming mentally ill. This is the way autistic people think. So maybe I'm not the best person to advise you, but I do think the issues you have raised deserve much serious consideration by society. I do hope you get things sorted out soon, and please do, when you can, comment here again.

Dead Weight

@Hera:

I don't want you or anyone else here to feel or really believe that I am in any way, shape or form attacking or otherwise annoyed with them. I am very appreciative to those who not only feel some of what I feel, but do that and find themselves in a position to engage me.

Anyway, it has been written that just because someone doesn't love you the way you want to be loved, doesn't mean they don't love you with all they have. "Love" takes many forms, some of which may admittedly not really be love at all.

Still....

I tell him that dying would be the greatest gift this life has to offer him. I tell him this because I believe that's true...for him and me. Not everyone agrees, of course, but they're entitled.

I tell him other things, too. But part of the problem is that he and I don't really have a relationship. We're related but we do not have what I consider a relationship. I feel like I'm more of a zookeeper: I feed him, clean up both his messes and him, maintain his dwelling, make sure he's protected from the elements, etc.

Now, my pets and I have a relationship. But not me and my son. Does that make him less valuable on this planet? To some, "no." To others, "yes." Does that make him less valuable to God? I think not.

I dare suggest that to those who do not have to bear the full brunt of his care it is relatively easy to say "Oh, he's so important!" They're entitled. But it's hard to take serious the thoughts and comments of someone who, as you stated, "hasn't lived it."

Some of what I claim to have said to my son has no doubt struck some people as being heartless? Unthinkable? Gut-wrenching? Pick an adjective. I know. I hear myself say it and think to myself "How can you feel this way about your own son, and then verbalize those things to his face?! You don't love him." And then I think "But what I want for him is to be free of me, of his body, and of this life, and to be with his mother and Jesus, both of whom love him more than I ever could. I do love him."

Does he understand me? I am counting on it, because he deserves better.

"If I was right there, I 'd be coming over today just to give you a break to go get a coffee or walk outside for an hour."

You know, it's rather funny actually. I think I give people the impression that I'm just running 24/7 because of him, either directly or indirectly. The truth is that I have a LOT of time on my hands. There's plenty to do around here, especially now that the warm weather has arrived, so I manage to keep busy.

What I want/need is him gone, with me having the option to visit HIM at HIS place.

His room here stinks of urine and feces, and that's WITH a high-quality HEPA air filter running most of the time -- once I get in there I usually turn on the air freshner; the bathtub has a ring/stain made of his excrement that wafts in the bathtub; I can hear him having seizures (yep; he has epilepsy, too); there are holes in the walls from him; there is the constant wondering what I'll discover when I go into his room (dead, alive, on the floor, in his bed, hand covered in feces because he's picked at his diaper again...); there's the bathtub faucet that I won't try and fix again while he's here because he'll probably just break it again (same thing goes for the TP holder); and then there is the daily reminder that I have failed him, and that maybe I should’ve left him where he was for the rest of his life, and just moved on with mine.

Through the years our family would take vacations, and rarely was he with us. Photos from places we visited and he was rarely in them. Christmas: he’d come over and his mother would try to involve him, but he “wasn’t there.” I always hated that he wasn’t with us. I wanted to rectify that as best I could. I would tell his siblings that he is no less a member of this family than any of us.

As I think of it, I once asked one of his siblings what they thought about their brother. My other child said “He’s just someone who lives with us.”

And that’s all he is: just someone who lives with us. A brother, but not really. Just some random guy who eats our food, poops and pees in the countless diapers we’ve bought for him and basically doesn’t do a thing for himself.

All I wanted to do was try and make him better. But every day I see him here I am reminded of how that didn’t work so well. I made the effort, at my own expense (saving taxpayers roughly $500,000 in the process (and I’m not exaggerating)).

And what do I have to show for my “investment” in a “black hole”? Well, what are black holes and what do they do? Quote: “A black hole is a region of spacetime exhibiting such strong gravitational effects that nothing—not even particles and electromagnetic radiation such as light—can escape from inside it.” (http://tinyurl.com/7n7h3r4)

So, have I made a good investment? Could I have done better? Should I have even made the investment to begin with? What if I can’t unload my investment? What if I’m stuck with this human black hole for the rest of my life? Will that have been enough of a sacrifice for the sake of society?

Hera

Hi Dead Weight,
Sorry; you misunderstand; I am not explaining things well.I have the deepest compassion for what you are going through. You have done everything you could, in a situation that no one could handle long term without breaks. You are burned out. You have done what you can in every possible way, and now you need to find different carers for your son. It is okay for your son to be in a loving group home, and for you to provide the care for yourself that you need. Anyone who judges that, to be blunt, hasn't lived it.
Yes, you need to take care of yourself, because you are a human being with limits who deserves love and compassion and happiness.
Normally, I try and steer clear of the religious discussions; but you asked ,so here is my opinion; the only question in terms of human value is does God love them. It's not even can they worship Him in a church. And imo he loves your son. And he loves you. What either of you can contribute, whether you need help or can give help ( and many of us go between both these things at different times) I believe he still loves us.
Your son has value even if he is unable to contribute to society , and you, needing help and support right now, burned out, also have value. You are not a robot, you are not an energizer bunny; its ok to need healing yourself.
And yes, when your life is better and you visit your son in a group home and bring him some treat he likes and he smiles at you, you will indeed most likely see many things differently.
You have lived something many haven't, and for the rest of your life, going forward, you will have a unique perspective on care giving, on burn out, and you will understand and have compassion for others in a similar situation.
If I was right there, I 'd be coming over today just to give you a break to go get a coffee or walk outside for an hour. Can't do that over the internet, so all I can pray is that you use the resources all the folk her have told you about and find the help and support you need. You have written a cry for help,and lots of us here are hearing it.

Dead Weight

@Grace Green

"Mr. Dead Weight,
I have read your comment and heard your cry. I'm sure others have too, many of whom will not even have time to write a response, or perhaps feel the futility of doing so. I can offer nothing except to say you are not alone in your situation. The cry of all the suffering goes out into the universe. One day it will be answered."

Thank you for your kind and gentle words.

But I have to ask: why am I "not alone in situation"? Why, if I understand you correctly, are there others (maybe many?) who suffer alone? What is going on?

During the years that the health of my first wife declined precipitously, so many would ask how SHE was. Of course this was a legitimate and appropriate question. But I can recall one...maybe two...who asked how I was doing. Me, the primary caretaker.

Is it so difficult for people to perceive that the caretaker is a human being as well? And that being a caretaker involves, at least for the vast majority of us, no formal training or education? (It also may involve impacts on career, children, and the familial relationship itself.) And that caretakers are often, in my opinion, overwhelmed with family ("Why are you (not) doing this or that?"), the medical community (You must (not) do this or that!") and "friends" ("My did (not) do this or that!?").

All of them may be well-meaning, but seriously....

How about coming along side and being a helper...a team member...a confidant...a voice...a partner...a consoler...a huge ear...a force for sanity, clarity, peace...all the things that support that person in this entirely overwhelming task.

Why is it that caregivers are "disposable"? That they're less human than those for whom they care? That they can burn the candle at both ends (and more ends if a candle had them) for as long and as brightly as they can?

We all have decisions we make, probably daily, that require us to make an assessment. To place value on any given exercise.

We have to quantify whatever investments we make.

I give up something to gain something else. Or, I give up something for someone else to gain something. But what if that for whom I am giving up something gains only life? Life that will require 24/7 care or supervision? Expensive care, as in millions of dollars over their lifetime? And what of quality of their life? Are we really, as outsiders, the best judge of their "quality of life"? In whose hands does that decision rest?

I certainly don't have all of the answers, but I will tell you that as having been a caregiver for a dying wife, and now a caregiver for my "dead" son, these are questions that both the caregivers themselves and the rest of our society need to ask...and answer.

Dead Weight

@Beleaguered Autism Mom

"Dear Mr. Dead Weight, What state are you in? http://noahhomes.org/"

Thank you.

Dead Weight

@Aimee Doyle

"Whenever I read something like this - I become angry at the neurodiversity movement - which has done NOTHING to help those who are severely impaired or their families. I'm talking hands-on, practical help. Haven't seen it. Despite all their talk about caring for all people with autism."

I agree, but don't get me started....

Dead Weight

@ Hera:

"I would be prouder of a child or friend who spent their life caring for another, than say ,an executive of a pharmaceutical company who spent their life knowing their products were injuring people, but tried to hide the effects to keep their company stocks up."

Respectfully, those aren't the only comparison options available, but certainly they illustrate the paradox you are trying to portray.

"...almost all religions value people, not because of the contributions they can or cannot make to society, but because they are innately worthy of love and kindness."

Indeed. But did not God design us to love and worship Him? If so, and I believe that this is the case, what does that look like? Can my son do that? Am I demonstrating those traits by doing what I'm doing, and feeling the way I feel? Perhaps it's simply my response to this entire situation? Maybe it's all my fault? Could be, right?

"And plenty of atheists have a great deal of compassion for all humans."

Having "compassion" is both easier and vastly less demanding than full-time care. And it's certainly a whole lot less expensive in every way possible. But what of the "compassion" for the caregiver? How does that factor in to the equation? How much should a caregiver be expected to give, and to give up? If the caregiver becomes "disabled," shall we say (for lack of a better word/phrase), well, what then? The caregiver is now no longer able to provide that care, and may very well need their own caregiver. All because they burned out themselves for another? How compassionate is that?

"You may well find your perspective changes a great deal when you don't feel so overwhelmed and aren't in so much pain."

I remember very clearly how I felt and what I told people before I quit my job, relocated and brought my son home full-time to care for him. I would say "I have to rescue him." I had hopes, good intentions and a plan.

Now, however, my only hopes, intentions and plans are to get him into a home so that I can, among other things, keep my house, maybe start dating (who wants to date, much less marry, a guy who is broke, and getting broker by the day, who lives in a smelly, stinky house and is attached at the hip to a fully-disabled person?), start attending church again, and FINALLY go bury my Mom's ashes (some two years later)...oh...and see if my passion, sense of humor, hope for the future and sanity will return. And maybe all the frustration, anxiety and guilt will leave, too.

(Come to think of it, maybe I'm more disabled than my son. All that's left is the physical, and how long will that hold out?)

Hera

Hi Dead Weight,
I would like to respectfully disagree with almost everything you are saying. Firstly, imo, care taking is , to use an old fashioned term, a noble profession. I would be prouder of a child or friend who spent their life caring for another, than say ,an executive of a pharmaceutical company who spent their life knowing their products were injuring people, but tried to hide the effects to keep their company stocks up. Morally, there is no comparison.
I don't know if you have religious beliefs, but almost all religions value people, not because of the contributions they can or cannot make to society, but because they are innately worthy of love and kindness.
From a Christian perspective, Jesus was pretty definite about helping the helpless.

".The King will reply, 'Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.'"
And plenty of atheists have a great deal of compassion for all humans. In fact, part of how I judge people is how by how kind they are to our disabled son. It says a lot about who they are as people.
It is obvious you are in a great deal of pain, seriously burned out, and need help right now. You may well find your perspective changes a great deal when you don't feel so overwhelmed and aren't in so much pain.
Sending kind thoughts to both you and your son tonight.

Dead Weight

I had rather intended to not re-visit this post, simply because I didn't want to risk getting slammed for what I said, which reflects, sadly, how I feel.

Thanks to those who refrained from taking me to the virtual woodshed. I do that enough on my own (believe it or not).

For obvious reasons, my anonymity is paramount. Without it I wouldn't be able to be free to express myself. So I will respectfully decline any effort to reveal more about myself and my son.

I must apologize for my rant. This story hit hard for me (and, I am sure, for others) and I felt "free" to dump, because, although my son has never evidenced any malevolent intent towards me, I can sympathize what things might have been like in this now-deceased man's household. It breaks my heart to think about his private, personal nightmare that played out day after day...after month...after year. And I absolutely wonder where were his family and friends? Did he push them away? Did he beg for help but was rejected?

Such torment should be the domain of no single individual.

    Where was his family, and where were his friends?

I don't know, and really am in no position to judge one way or the other.

But what I can say is I doubt that his son's life is worth more than his was. Dead or alive, that man had value. And dare I say that his life was more valuable than his son's. And I think that it is this disparity that just grates me.

One "whole" person gives up their life for someone who never has and never will be a contributor of any sort. All that person will do is drain resources.

Mother is dead. I have no idea the circumstances around that. Maybe it had something to do with the son; maybe not.

Now the father is dead. I have no idea if his death is attributable to his son. On the one hand it would explain quite a bit, but on the other hand it raises some interesting questions.

But if their deaths can, in one way or another, be laid at the feet of their son, how do we justify those deaths? What do we tell ourselves about the "Why" and "Wherefore" of their deaths? Do we say something like "Well, they died caring for their son"? Is that the totality of our consolation? Is this the best that can be said of this mother and this father, that they gave their lives for their son? And that of a son who will do nothing but consume for the rest of his life.

And how do quantify their "investment" in their son? I mean, their both dead. Meanwhile, the son lives on, to (possibly) wreak havoc in others' lives...to consume the resources of others. And for what? What will whomever cares for him have to show for their devotion? And then, can he be "happy," in his diapers and inability to manage a shred of life on his own?

I mean, at least Stephen Hawking, a Godless man by all accounts, had a brain that could produce rational thought...that could learn, teach others and be an example of how physical limitations can, in some cases, be overcome or otherwise be counted as relatively unimportant.

But that's NOT what we have here.

All of this reminds me of a "Garfield" cartoon I once saw.

In the first cel, Garfield is reciting Descartes' famous line from his Discourse of the Method: I think, therefore I am.

In the second cel, Odie bounces by Garfield; not a word is spoken.

In the last cel, Garfield says "Poor Odie; he doesn't even know he doesn't exist."

That's how I feel about my son. He's there, but...yeah...not really. And I can and do feel the same way about this Dr.'s son.

So how do we define "happiness" or "better off" or "value" for him/them? Do we do what we do for them because it's actually useful to them, or because it makes us feel better? Maybe we just want to keep the unemployment numbers down for Social Services agencies. Maybe politicians can stay in power longer by giving us all this money and stuff, that really isn't theirs to give.

Well, I suppose each of us has to decide all of that for themselves. But we're all footing the bill, how ever it is we feel about it all.

For me, I would rather my son had died those first days he was in ICU. I could've lived the rest of my life mourning, blissfully unaware of what our future would've been like had he lived.

Does that make me an unloving, uncaring, heartless SOB-of-a-Dad? I suppose each of us has to decide that for ourselves.

Thank you.

Aimee Doyle

@Dead Weight

Your pain hit hard. I am so sorry. One thing I would suggest would be talking to a Legal Aid attorney in your state to see what the options are for getting an emergency placement. Your adult child should qualify under the Legal Aid income guidelines (even if you don't). I don't know why you haven't been able to get an emergency residential placement, but you should be able to get on the short list for that. Until then, what sorts of day program placements are available in your state? You should also be eligible for some kind of respite. A social worker may be able to help.

Hera's suggestion about the hospital is good. Also, call 911 if you have to - your situation is desperate - and perhaps that will get some attention.

There's also the National Council for Severe Autism. I don't know if they have a resource list by state - but it's worth checking. You'll read stories about people who face situations like yours.

Don't try to carry this burden alone any longer. I hope you post again and let this community know how you are doing. I care...and I'm sure many others do as well.

Whenever I read something like this - I become angry at the neurodiversity movement - which has done NOTHING to help those who are severely impaired or their families. I'm talking hands-on, practical help. Haven't seen it. Despite all their talk about caring for all people with autism.

Beleaguered Autism Mom

Dear Mr. Dead Weight, What state are you in? http://noahhomes.org/

Grace Green

Mr. Dead Weight,
I have read your comment and heard your cry. I'm sure others have too, many of whom will not even have time to write a response, or perhaps feel the futility of doing so. I can offer nothing except to say you are not alone in your situation. The cry of all the suffering goes out into the universe. One day it will be answered.

Hera

Hi Dead Weight,
You sound like you are in a very bad spot, and need help immediately.
Can you go to the doctor and tell them how bad you feel? Like now, today. Bring your son with you. Dirty diapers and all. Ask for a mental health check for you, right now.Tell them what is going on,and what you are thinking and saying to your son. . You sound depressed, and you also sound like maybe your son's life may be at risk. Also, ask them to get you an appointment with a social worker to help with respite care/his bills, and placement.
You know the reality is your son can have a good life after you die; maybe a better one than he is having right now, being told that he is a burden, or that he will die a horrible death after you die. People, even non verbal people sometimes understand more than you think. I was a nurse once, ( left the profession a long time ago now) and caring for someone non verbal ( with proper breaks, , support and a life outside work ), can be very rewarding for the right person in the right situation, and getting a smile from a non verbal person is a reward of its own. So your son may in fact be just fine after your death.
If things get really bad and you think about harming your son or yourself, go straight to the nearest emergency room. Tell them you are losing it, tell them you can't stop thinking about harming your son or yourself. Don't let them talk you into saying you feel better. Insist you are a risk of harm to you or your son. Legally if you make a fuss and say you still want to harm yourself or someone else, they have to keep you and assess you at a mental health facility. 48 hours of a break, right? And they have to take care of your son, because he is right there. It may even bump you further up on the group home placement .
If you are not at that stage, you can also call a suicide hotline and talk. A kind voice on the other end of the line can help, and that is what they are there for. People who are feeling overwhelmed and need some human contact to help them get through stuff.
And please take care of yourself right now today, with some kind of treat. Favorite chocolate, Favorite tv show. Rent a movie to watch. Take a long bath. Whatever you can do to bring a little more joy into your life. And maybe do the same for your son. Favorite food, perhaps?

You mention medicare, so I am guessing you are in the U.S. Which state are you in?
It might help people to give better suggestions.
Please everyone, can you help with ideas and thoughts here?


Dead Weight

I find the timing of me coming upon this story to be very ironic.

As a widower whose wife passed away some years back, and who is now approaching my fifth year of caring by myself for my adult son with autism, I am waiting to hear that my son can be moved into a group home. It is unpleasant to consider that he won't be moving out.

I've often told him that if something happens to me, he might as well be dead, too. The best scenario is that he dies first, by whatever means. But if I die first, there is no hope for him. He'll live for days, resting in his diaper, with the urine and feces eating into his skin.

Should my son not be moving out, I think it will be because the group of people that made that decision think that I am like so many others who make such requests...people who want to keep their two/three cars, their boat, their vacation home, their careers...their lifestyle. People who haven't really given up much at all to care for their child.

People who have wanted to have their cake and eat it, too.

But for us, it's a matter of survival.

The mortgage company has given me a six-months deferment on payments. After that six months, the mortgage will have been in arrears for 9 months, and I have little idea how that will get paid, along with the regular monthly payments.

For the entire time that my son has lived with me -- almost four years now -- I've paid all of the bills out of my pocket. I didn't realize he had insurance. My savings, proceeds from the sale of my house (we moved), my retirement from work (which I left to care for my son)...it's all gone.

SSA cut off all benefits some months back when I wanted to have his Medicare insurance cancelled so that I could take the money from the premium to pay for electricity, food and other more-immediate bills. Over the proceeding months we were able to get things back to normal, with an added benefit. So for now, we're able to make ends meet.

But what of those people who will get "The Prize" of group home placement? What have they given up to care for their child? Why should they be selected over me?

I think of that UK woman some time back who, with her autistic child, walked to a bridge, and jumped. I don't know for sure why she did it, but I know why I'd do it.

Where is "family"? Where are "friends"?

I've been at this 47 months, alone, with not one day off. Really. Not one day.

Every day it's me: cooking, cleaning, bathing, wiping his ass, enduring the near-constant smell of urine and feces, taking much-needed money and "investing" it in someone who does nothing and will never be more than nothing.

Well, there ARE two things I can say about my son:

1) There is no need for astronomers to look into the vast openness of space to find a black hole. My son is the epitome of a black hole: he sucks in everything around him, leaving them with nothing: no passion, no vibrancy, no hope, no money...nothing;

2) He could easily be the poster child for abortion.

Now, of course people will criticize me for some of what I have said. I myself hate how I feel around him, and what I think and say about him. But I will say this: he has value to others only because they have never...and will never...have to bear the full weight of caring for him. For them it's a job. He's their employer.

Not for me. I have taken it all on...for four, long and lonely years.

No more.

(Sorry to bitch and whine, and to put the focus on my situation when there is much grief to be had for this father. My condolences to his family and friends (presuming he had some).)

Lisa

I live in Spokane and have been following this story. I have no personal history with Autism, but this story intrigued me. The Mother died 2 years ago and was this boys/mans main caretaker. She wrote a book about living with Autism, which I bought and read. Its called "Break on Through" by Constance Porter. According to the book the child/man sounded very aggressive. Now I am curious as to how the mother died. Such a sad story all around.

Benedetta

Beleaguered Autism Mom, I too wondered?
Not only that but burn a body. A fire is not an easy thing, I know; I just got done burning a big huge brush pile, myself?

Gayle

Another tragic story about a family with autism. We have heard so many tragic stories of families with autism that we can not even comprehend could happen. We have also heard so many tragic stories of people with autism living in group homes and state institutions.
As Bob Moffit said, "God bless both dad and son...their lives of "quiet desperation" could apply to all of us."

Beleaguered Autism Mom

So a non-verbal guy found wearing little clothing and does not flush the toilet is capable of dismembering a body?

Mom 4 Truth

A horrible, tragic story. May I ask why the term "pre-verbal" is used? It seems to imply the 29-year-old autistic man will become verbal which only adds to the overly optimistic portrayal of autism that this post strives to refute.

Angus Files

Horror story come to life.A normal family and this is what happens...of course nothing to do with vaccines and autism that and only that,the Political class are sure of.

Pharma For Prison

MMR RIP

Bob Moffit

Heart breaking tragedy for this father and the apparently beloved 29 year old son that dad has been lovingly caring for his entire life.

Don't know what happened .. but .. I find it hard to believe the son was mentally capable of "dismembering and burning" the body … in an obvious .. some would say cunning .. attempt to destroy evidence of what happened?

God bless both dad and his son .. their lives of "quiet desperation" could apply to all of us.

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