Saving Autistic Adults from Institutionalization Part One

[kassandramd]

I have a 9 year old with severe autism, but his behavior is MUCH worse than this kid. Plus I was a single mom w no family, so after years of depression I developed panic disorder from the stress and later a nervous breakdown so I sent him to the state. I'm not allowed to see him as I had to relinquish parental rights. He's in a world renowned boarding school for autism so he will be fine...

[kassandramd]

The states cannot afford to provide more in-home care. If he is over 18 and didn't have family, hed likely end up homeless and accidentally run over by car. Sad reality but that's life.

[kgaccount]

@kassandramd I'm sorry you had to place your 9 yr old autistic son after you had a nervous breakdown. It must have been hard being a single mom dealing with all this, but as for your second comment, the states CAN afford to provide more in home care. Do NOT buy the BS that we're in a budget crisis. We have a crisis of mismanagement of funds, as in they aren't going to the programs that need need them. They're going to Michelle Obama's next vacation lol

[codename7000]

I am glad they have a place to stay though and not just throw them out on the streets.

[boom3rang]

As someone who just this week dented the wall of my local psych ER with his head, I can tell you that institutions are not set up to deal with people with autism or tactile defensiveness disorders and the like. Thanks for sharing your video.

[kgaccount]

@boom3rang So true. Sorry about your bad experience.

[step11OT]

My state (TX) provides free augmentative communication devices (Dynovox) from funding the phone company collects from residents. A picture schedule or possibly PECS may could help Jamey express himself or request the items he desires to limit the SIB. I don't have the opportunity to know your son or see the joy he does bring to your life but I do hope you find support for your family. Keep working at what you know is right!!

[step11OT]

Mom.To reply to your statement- Severly Autistic Children are placed in institutions because they don't have parents and advocates like you... I haven't had the opportunity to read comments or view most of your videos so excuse me if I sound redundant. Have you had the opportunity to try weighted vests and blankets, seen snoezelen room, or possibly have therapy (Speech or Occupational Therapy, etc )schools nearby who could offer you support or free services.

[kgaccount]

@step11OT Yes, I bought two weighted blankets. He LOVES them.

[beatz470]

Hi. It would be good to see you happily managing your son. My love goes out to you'

[sharonlife58]

Yeap, they are institutions that hire people who are not trained, can not find other jobs, even might have prison recorders, that will not give the best care for your love one. I do not trust there judgement for my daughter care. Mom you are doing a excellent job with your son. I go through the same thing, it truly is a job within itself. You make my job seem simple, I pray for you young woman.

[sharonlife58]

Yeap, they are institutions that hire people who can not find other jobs, that will not give the best care for your love one. I do not trust there judgement for my daughter care. Mom you are doing a excellent job with your son. I go through the same thing, it truly is a job within itself.

[Alphonse0410]

JUdge Rotenberg Center treats people with Autism.Really works

[Thomasnolaniscool]

I like how theres a dog like WTF these humans dumb they wouldnt keep an autistic dog...FUCKERS

[WESTMIDLANDSGIRL2K11]

@Thomasnolaniscool aww, ever so funny aren't you *being sarcastic*

[anthony66363]

Nice Clip

[shipcritic]

What is wrong with a developmental center? Are they treated badly there?

[kgaccount]

@shipcritic Like any government run situation: It sucks.

[CancorseTV1]

@shipcritic in "help places" for disorders its always like the "professionals" are looking down on the people with the disorders. They always underestimate them theyre a lot smarter and know a lot more than you could ever imagine, I worked at with a in school program for kids with autism, down syndrome etc and the people just treated the kids like 2 year olds. Man giving those kids some independence makes such a difference in their behaviour

[Counterbrilliance]

In Canada the government mandates children and adults with severe Autism to be thrown in an institution.

[DarkQuietWyattON]

@Counterbrilliance Yeah that is what socialized medicine does for you. I live in a "residential school" (I am blind and have autism but not as severe as Jamie) and I think it sucks most of the time and I have a one on one aid 18 hours a day and there is a staff member present for several of us when I am sleeping. I would LOVE to live at home. My younger brother lives at home but I don't seem to get that luxury. I think this mom ROCKS!!!!

[DarkQuietWyattON]

@Counterbrilliance -@Counterbrilliance Yeah that is what socialized medicine does for you. I live in a "residential school" (I am blind and have autism but not as severe as Jamie) and I think it sucks most of the time and I have a one on one aid 18 hours a day and there is a staff member present for several of us when I am sleeping. I would LOVE to live at home. My younger brother lives at home but I don't seem to get that luxury. I think this mom ROCKS!!!!

[Shoes454]

How often do you have to redirect James?

[kgaccount]

@Shoes454 Pretty much all day long to keep him occupied, happy, safe and doing things that will promote good health and happiness.

[blacsouljah]

Thanks. Praying for you and Jamey.

[lbplayer177]

Thank you for posting this, and good luck to you and Jamey

[MrSunshineinthesky]

they told me i should institutionalize my little boy who was born with cerebral palsy and developed epelipsy. i refused. he is completly normal and is 6. he walks fine with his braces and a crutch a was recently placed in a class for "gifted" children. as i was told of this i thought how they wanted me to lock him up. you can't always go by what "profesionals" say may God be with you, your family, and your precious son

[rainforestangel]

excuse me but do you treat jamey as a person or as a problem?

[kgaccount]

@rainforestangel We treat Jamey as a PERSON and his slamming his fists into his head as a PROBLEM that must be treated for his health and safety.

[TheSophist2007]

@kgaccount What kind of a life does he have?

Is he happy in his own way?

In what way is he different as a 'person'?

[stargaze2081]

I don't know why the state places severely autistic adults in institutions, but they do, often. They get placed in state mental hospitals with severely mentally ill and psychotic people. Many times these institution campuses have "civil" and "forensic" hospitals, forensic meaning the "criminally insane". My cousin David is severely autistic, has epilepsy and SIB and has been in a state mental hospital for the past 12 years. He is neither a criminal, nor psychotic. This is not appropriate care.

[kgaccount]

@stargaze2081 The state system workers serving disabled here in California once told me, "our system isn't set up for severely autistic people who punch themselves and have seizures." Well, my answer was: then f....g get set up for it, where the hell is all the money you get for disabled going? The problem is that group homes either deal with all behavioral issues or just medical issues. If the autistic person has BOTH seizure and behavioral issues, the homes are trained to handle both.

[queenfan45]

My theory of SIB is this: they injure themselves because they want to try and break out of the prison that is there body and mind.  It's like a shell and they want to get out. Just a theory. I don't think we'll ever know the answers.

[dclark12553]

What do you do if you, say, ...... You have to take Jamey to the doctors for a checkup?

I wonder how difficult it can be when taking Jamey on a trip to the doctors by yourself?

Has Jamey been on long trips in a vehicle before?

[kgaccount]

@dclark12553 It can be very difficult. I've had to pull off road, jump out and stop him from punching self in head and face, if nobody was able to come with me. I try to predict and judge if he's prone to a sib meltdown, and I'm pretty good at it, but sometimes, you can't avoid one, let's say if a loud honk or screech sound comes from environment you can't control when you're outside. That's why 2:1 is best

[KSitz77]

To the mom" I can tell having this kid gives you a real sense of purpose. I've watched enough videos of this now to know you are a great caregiver to him and no one could ever do it better than you.

[kaylinsvlog]

shame on the state for not giving jamie the proper care he needs for his complex disabilities!! have you thought of filing anything agianst them?

[hollyleenogales]

we are experiencing recent SIB with my autistic 27 year old son. He is non verbal so guessing what is wrong is a challenge. Your videos were very inspiring if you can do this 24/7 maybe I can manage. (my only problem is my son is 6'2" and 200 lbs) His SIB occurs about every 2 to 3 weeks lasts maybe 10 to 15 minutes but they can be very violent. sometimes resulting in lacerations that need stitches swollen lips etc...I don't know what I would do If this was a daily occurrence. .

[anirre]

you are heroes doing this i can tell you give your life for him but all i am thinking is your other son.What about his life and needs? cope with autism every single day of your life...so amazing but still i am thinking of the other son ..

[kgaccount]

@anirre I make it top priority to spend time with other kids, and let them know they are just as important as Jamey. Getting more in home supports will also help free me up to spend more time with my other children. I take them on hikes, shopping, movies,etc..can't do this most time with Jamey, unless we have nursing coverage

[qtpa2tee97]

i read about nate. tht is horrible. tht child was adjusted to living at home with his parents. dnt they kno changing routines with an autistic person is very disturbing to them? and the parents NEED to have the right to choose wht their child was taking for medication. i rly hope nate is doing better now. nd i HOPE to god this NEVER happens to jamey. ur a great mother. keep doing wht ur doing. ur son is perfect the way he is.

[ckcarlson1]

My heart goes out to you. How have you been able to raise your other children? They seem like good kids, very sensitive and connected to family needs.

[Skymaker69]

Part II: Are you sure that there would not be any place suitable for him? He needs a lot more than what a family alone can give. He needs love and all the care a family can bring, but he needs more than this still. And at times, it is important to not be too affected emotionally because one does not see the situation for what it is. I don't mean of course love is not needed. I'd build a home for my son if I had to, but I know it will also come the time when I cannot provide for his needs fully.

[kgaccount]

@Skymaker69 NO, there is definately not a more suitable place than home. We've tried. It's too dangerous. People can't protect him. Too many miscommunications, short staffings, lack of funding, zero quality controls. Home care is safer, with the right supports. I don't judge others for placing their child...it's their choice. This is my job. To protect my son. For life.

[kgaccount]

@Skymaker69 Also, it's not hard for me to meet Jamey's needs. I just need breaks to rejuvenate. I've been doing this so long, it's easy. I've got a nice system at home, but it gets draining if I don't get to get away for a few hours a day and go work out, talk to others, etc....that's really the only challenge. Just like families who hire nannies, cooks, etc...there's no reason I can't have help for Jamey at home, especially when these agencies get BILLIONS to help families like ours.

[Skymaker69]

@kgaccount I understand, but what will happen when parents pass away? Are you hoping Jamey's siblings will take over? Have you read the book, the Child who never grew from Pearl Buck? It talks a lot about all the issues of transition. One day there will be a transition and personally I prefer to see it from my own eyes rather than hope people will take over. All these issues are very well talked about in this book, but also Pearl set up what her daughter needed. I think I'll do the same for mine

[Skymaker69]

Part I: Just an observation: there seems to be a gradation in Jamey's SIB- Slapping on side when he wants a cracker or is moved to another place is not really SIB, it is more like his mode of communication and I doubt slapping on side hurts him. It may escalate to serious SIB, if his needs are not met, but that would suggest that it is indeed communication. I understand the situation is draining but I would think it is not beneficial to be annoyed with this slapping and his vocalizations.

[kgaccount]

@Skymaker69 The problem is I'm told by behavioral specialists NOT to give him anything, if he's slapping or engaging in any type of SIB. Then, there's the mother side of me that wants to give him whatever he wants, so he's happy, and stops hitting self....People at school go through same problem. They want him to stop hitting, and so they give him what he wants. It's hard for people to not give him when a person begins to punch themselves in head.

[Skymaker69]

@kgaccount I think this advice might not be totally correct, I would really focus on the severe SIB first of all, as they propose, and find ways to redirect his more gentle slapping on side to progressively clearer communication mean, e.g. he slaps his sides when he is moved to another room, get him to slap in your hands, slap, slap, slap, yes we are moving to another room. Then a high five or touch a picture for crackers when he wants this.

[kgaccount]

@Skymaker69 That is good advice. I agree. I do that, but sometimes it doesn't work, but I agree, the more severe SIB is what to stop and sometimes U have to "roll" with the lighter ones and do all you can to re-direct, which is pretty much an all day event, some days. Today, he's been really good. NO SIB!

[Skymaker69]

@kgaccount As for the more sever SIB, if there is pain behind, the only way to address it is to find the source of pain and treat it. Behaviour analysts rarely consider pain. They think their understanding of behaviour and methods to control it is an ultimate law, but they ignore the biology, which they don't know of. You need both approaches for certain, even the answers are not yet there, fundamentally, both approaches are required.

[akitaakita2]

My guess is to remove the parents control. So they can provide the minimum necessary care, without you knowing whats going on. In my son's recent class room there is a small disabled child who is propped up on pillows by himself, I do not know what disability is, but I have been in 2 hour long meeting where not a single person interacted with the child. They prop him up like a decoration and then go about there business. This is a school classroom.

[sexiilicous1]

whats this song at end ?

[FreeMystery]

good question about why the state pushes for institutions,