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Living with Autism


March 18, 2012

Realities of Parenting Severely-Autistic Children

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Sunday, ice cold and rainy. This makes a difficult day for my autistic son, Jamey, his nurse and the entire family. Wind and hail cancel plans to go anywhere. We’re stuck inside. You can only walk so much in the limited space of a home. Be great to have a giant indoor gym. Or spacious covered, enclosed patio. I consider the Mall, but that’s a no go, since we’re dealing with a leaky roof. Seems a new leak appears every few hours. I divide my time between gathering buckets and responding to Jamey’s needs. To prevent self-injurious behavior, the day becomes a steady stream of acute interventions. I help the nurse massage Jamey’s legs, arms and feet with apricot oil infused with lavender and orange. I assist in giving 2-3 warm Epsom salt baths, every 5 hours.

Around 3pm, because Jamey is exhibiting repetitive loud vocalizations, I crack open a capsule of L-Tryosine and pour it into his mouth. Within an hour, this reduces disruptive vocalizations. Thank you God!

The nurse on duty is a lifesaver. After we had won more nursing hours, I recruited him from a nursing training program.  Just a well-rounded, hard working person, who is also a great father, so I know when he’s with Jamey, he treats him as a father would treat his own son.

After another bath, Jamey shivers and stamps his feet. He’s in a hurry to get back to bed and bounce. He loves to bounce. The nurse offers Jamey his hand held vibration tube. Jamey holds it against his cheek and smiles. Then he starts hitting his neck with it. The nurse re-directs him to hold vibration tube on his chest. He thumps the tube on chest. He’s laughing as he does this, so we know it is behaviorally driven. He’s not in pain or anything else that could explain this. Just as he’s about to thump tube on lip, I grab it.

It begins to hail. On his bed, staring out the window, Jamey watches tiny lumps of falling ice. He’s always watching the weather. The nurse straightens the room and does some charting.

Jamey has a few myoclonic jerks. I pour two tablespoons of Blackberry Swirl Barlean’s Fish oil in his water, hand it to the nurse. “Just give it to him whenever he’s ready to drink,” I suggest. Jamey is funny this way. Even when you know he’s thirsty, he may refuse a drink up to 5 xs, before he finally decides he wants it and gulps the entire amount. Perseverance pays off.

Around 7pm, Jamey will eat dinner and be given evening medications. Topamax. Keppra. Mirtazapine. Clonazepam. These are hard on a young liver. That’s why I buy and supply Jamey with Milk Thistle and N-acetylcysteine. Both are potent liver protectors.

No matter how many cups of tea today, I feel fuzzy. Every brain has its ups and downs. I wouldn’t be surprised if my brain is sapped of serotonin and dopamine. It’s been years of acute and chronic stress. “Are you okay,” asks my teen son. “You look terrible.” I appreciate such honesty. It’s true. I’m sporting pajamas splashed with Ensure. Hair matted with oatmeal, as if there’s still an infant in the home. Eyes smudged with yesterday’s kohl eyeliner. And frankly, I don’t give a damn.

Tomorrow, Jamey goes to his day program. He’ll be back on routine. I’ll get dressed. Put on some fresh make-up. Condition my hair. Enjoy thinking without constant interruptions. Work on knee rehab exercises (a few months ago a horse fell on my knee and I recently had surgery).

Wait a second. Can you imagine if I had no help with Jamey after knee surgery? Little or no help is the reality for many parents with severely-autistic children. The only reason I have help is because I fought like a caged and wounded animal to get it. I worry again. Damn it, I’m always worrying.

What if the relief and support we have now is, when we least expect it, is challenged? Unlikely, but never be too sure. Never be too confident.  Stay guarded. What if some bureaucrat, trying to cut costs, arises and presents with the casual cruelty of a person who has never lived with severe autism? And tries to bully us into some bull? These are realities. I play these scenarios in my head. I gather endless evidence to protect my son— just in case. Evidence of when he was left alone in his room at a group home to beat himself so badly he needed ear surgery to repair the damage. Evidence of officials paid to provide supports who denied us support in times of greatest need. Evidence of other severely-autistic persons killed in out of home placements. Murdered and ignored. Evidence of cost of care of severely-autistics in state institutions vs. cost effective care provided at home. Evidence of dead parents and dead autistic children heard of only after their bodies are carried away and buried in the earth.

Maybe there’s part of me that knows because I have gotten the support my son needs, I must help others find the support they need. How do I help? I haven’t met the barricaded bureaucrats invading their lives with nonsensical excuses to deny help.

The emotional toll of always fighting for your child is both invigorating and debilitating. I secretly ache for families I fear may not make it. Who may end up another tragic headline in tomorrow’s news. I worry about myself. Even in my strength, there is still a piece of me that is fragile, fearful and feral. God has to constantly humble and teach me. I can be stubborn.

Will time heal these worries? Or will they open each time another incident occurs? Or do spontaneous remissions or bad news make me stronger? Spur me to regroup, rethink and act? Do I realize these worries and threats may always be here, but it’s how I react and handle them that will shape and hold our lives?

“You’re obsessing again,” I was told during battles to get more help. Can you imagine if I hadn’t been obsessing? I’d be trapped in my home, going nuts. My son would have little support. You don’t get through life with a severely-autistic child without being a little obsessive. Perhaps a bit of obsession gives parents of autistic children an advantage. Don’t give up. Stay focused. As is true of ice cold, rainy days, there is always tomorrow.

Speak up for those who can't speak for themselves, for the rights of all who need an advocate.” Proverbs 31:8  (Complete Jewish Bible).

March 10, 2012

Practical Gifts for Severely-Autistic Individuals

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                               Practical Gifts for Severely-Autistic Individuals

A lot of people don’t know what gifts to give a severely-autistic person for special occasions, such as Christmas or Birthdays. Here are a few practical ideas.

For Autistic Individuals with Epilepsy:

  1. Fish Oils. A good brand is Carlson. Other brands are good too, but here’s Carlson link. Carlson Labs. ...
    fully potent and free of detrimental levels of mercury, cadmium, lead, PCB's:

  2. L-Taurine.  
     Research shows L-Taurine is a safe, effective adjunct to conventional medications in most people with epilepsy. You can find this in any health food store. The dose is supposed to be 3 capsules a day, in divided doses, total of 1500 mg. Source:
  3. Protective Helmet or Headgear. This may seem an odd gift, but when an autistic person has increased seizure activity, it’s a great thing to have at home, school or Day Programs. Do Internet search under: Protective Head Gear and look under “IMAGES” in search to see what styles and colors are available. Remember, you can buy headgear from martial arts stores and even sport’s stores, so long as they are what will assist in the protection and safety of the autistic person in mind.
  4. Floor Mats. For kids: Do Internet search under: “Alphabet and Number Floor Mat.” For Teens or Adults look for something more sturdy. Do Internet Search under: “Folding Gym Mat” or “Tumbling Mats.” Look under “Images” so you can SEE what they look like. *
 * I place padded floor mat on wall of my autistic son’s bed, tucked behind bed, pushed up against wall. It acts as a noise buffer and protective cover in event he had a seizure or was self-abusing, he won’t hit hard wall. It’s also good to have mats inside bathrooms, to avoid falls on hard flooring or tile. I bought mats at Garden Area of Home Depot and put 3 of them in bathroom. They’re waterproof and provide protection in event of fall.
5. Music. Buy a Mozart CD or tape. Listening to Mozart’s piano concertos for eight minutes a day can reduce the frequency of seizures in young epilepsy patients by 30 percent, showed a study by Kaohsiung Medical University (KMU). www.sciencedirect.com/science/article/pii/S1525505011002800

For Autistic Individuals with Self-Injurious Behavior or other Behavioral Challenges:

  1. Protective gear. See above. Also, boxing helmets that cover ears. ALSO consider protective gear for arms, legs, hands. You can find this stuff at any sport’s store or ON-LINE by searching and analyzing different types of protective gear available. Martial art’s stores seem to have a lot of excellent choices.

  1. Arm Compression sleeves. Many autistics with self-injurious behavior are tactically defensive. Arm compression sleeves may help. http://tulane.edu/asvpr/upload/Barrett-LL.pdf. You can find more information about this: www.abledata.com/abledata.cfm?pageid=113582&orgid=109562. You can FIND arm compression sleeves at sport’s stores or ON-LINE by searching under “arm compression sleeves.” I have used this and it does seem to help calm our son during times of increased self-abusive behaviors. Best applied the second the behavior starts to increase, as once it starts, it may become rapid, obsessive-compulsive behavior and it can be hard to get on sleeves at this point. It does NOT restrict movement, but offers sensory support. Mitigating sensory dysfunction is one key element in reducing self-injury in autistic person.  TEMPLE GRANDIN, Ph.D. ... deep pressure applied by foam-padded splints[or some type of compression] on arms reduced self-injurious behavior and self-stimulation in an autistic child.

  1. Leg Compression sleeves. Same therapeutic reasons as noted above. Great for autistics who walk a lot and may have pain or soreness in legs. Any discomfort, soreness or pain is a known trigger to self-injurious behaviors in autism.

  1. Cooling Vests/Cold Therapy. Here’s what one occupational therapist says about cooling vest for special needs persons with self-injurious or aggressive behaviors: Kool Max cooling vest has helped reduce frequency and intensity of self injurious and aggressive behaviors in adults with developmental disabilities I serve. The cooling vest has helped prevent people from escalating into 'Fight or Flight' mode in the adults with developmental disabilities... The cooling vest makes bus rides to work in the summer much more bearable and has cut down on self injurious and aggressive behaviors in the adults with developmental disabilities I serve." Source: http://www.polarsoftice.com/testimonials.html.  You can find products to buy here: http://www.polarsoftice.com/bodycoolingsystems.html. What I like about cooling vests is they may double as a weighted vest, which provides additional sensory support to autistic individual. Polar Products seems a reliable, good place to buy quality product. Drug stores also carry cold packs, but don’t always have ones you need. Also consider:  Many autistic individuals with behavioral challenges tighten their muscles. So theoretically, neck or cervical spine can become tight and painful.
     Providing cold therapy seems safe and effective. A great practical gift.
  2. Weighted Blankets.  Research shows weighted blankets provide sensory support for children and adults with autism. We have two weighted blankets that do HELP calm our autistic son if he begins to punch self. Please note you NEVER, EVER cover a child’s head with a weighted blanket. It’s meant to go up to shoulders. I seldom see warnings about this on any site selling these blankets.  To find the same durable, colorful blanket we use: http://www.mansionathletics.com/vinyl-weighted-blanket-w41177-sensory-integration-weighted-blankets.html?channelid=Google%20Products

6.    First Aid Kit.  A basic first aid kit is helpful to have around for minor cuts. Over the years, I have noticed my son, along with other severely-autistic children and adults have frequent cuts and abrasions on their legs, arms and hands. This is because they may fall to knees on the ground during a meltdown, bite self or scrape into things. A basic first aid kit, which includes many Band-Aids and Anti-biotic Ointment, is a thoughtful, practical gift. Find them on-line by searching under “basic first aid kits.” Drugs stores also carry kits.

  1. Therapeutic Swing. Of course, you wouldn’t give this gift to the autistic individual who likes to throw things or turn things upside down. Or maybe it would help. Just things to consider. Every autistic has his or her own personality traits. Search under: “cuddle swings autism” or “swings for autism.” Occupational Therapist sites can give ideas, as well, as they use swings for vestibular therapy.

Other Gifts to Consider

1.      Offer to baby-sit or provide respite care night out for parents.
2.    Provide gift card so school, program or the parents can purchase what they need for autistic individual.
3.    Clothing. Pick out stylish, quality, comfortable clothing. Put together an outfit. Search under: natural, tagless, seamless clothing. Also GAP, Hanes and other major brand stores offer this type of clothing.

March 7, 2012

Warning Signs of bad caregiver or nurse

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                          8 Signs of a BAD Caregiver or Nurse:

  1. Can’t get off phone or computer. This type of caregiver/nurse is always on the cell phone. Constantly speaking or texting on phone while getting PAID to care for vulnerable patients. A few months ago, in a hospital, I saw an RN sitting down at what appeared to be her charting computer, actually ordering stuff off Amazon while a patient was screaming for help. This behavior is disrespectful and unprofessional. There are exceptions.  For instance,  say you work home health. It's a night shift. Patient is sleeping. However, since each patient needs to be monitored even when they are asleep, if the nurse is on a phone or computer, it should be while facing the sleeping patient. Not with backed turned, oblivious to respiratory status, voiding or seizure activity. Use common sense! Another exception could be during a day shift with an autistic patient, like my son, who walks up to 5 to 13 plus miles a day.  During the marathon walking, some nurses play music on their cell phone for my son...awesome! Nothing wrong with that, but again, don't be texting your buddies or checking the news when you need to be mindful of your patient! If a nurse is out in community, chat on a hands free cell phone.  Your hands need to be FREE to keep your autistic patient safe. Or, again, if it's night shift and your patient is sleeping, fine, text away, so long as you are keeping your EYES and EARS on the patient, to monitor him for seizure or SIB activity, which can happen while he's ASLEEP. (A few years ago, on a day shift, I once witnessed my son pick up leaves off ground and stuff them in his mouth, and the nurse didn’t even notice, since her eyes were glued to texting!)

2. The Lazy Caregiver/Nurse: You all know this type. This one comes in as they just fell outta bed. They've got 6 books they're gonna read on shift, cup of coffee in each hand, 12 donuts in their bag. And as soon as their behind hits the chair, the eye lids start closing, as if their on vacation, not on a job. Need I say more? 

3.    Can’t shut-up caregiver. We've only had ONE LVN like this and he was totally NUTS and is the son of the eye gouging RN caught on tape. This won't shut the F up caregiver shows up to work and the first thing isn’t to ask how the patient is doing, but to launch into a rapid flow of chit-chat about a variety of irrelevant subjects other than patient status, needs and care. This particular mental case, (whose father was later caught on camera abusing Jamey), would plop down and begin talking about personal problems. Mainly about his wife. And their sexual problems. It's terribly confusing for a parent to be in the presence of a home health nurse like this when you are exhausted and desperate for help in a system that leaves you with little choices and support. This same nurse, which I tell you about so you can compare if you have a similar nut job in your midst, would then waste 25 minutes going on about what happened in his life. The more his mouth moved the more I felt orthostatic hypotension. This nut ball used to tell me how he wished his wife would do more kinky things...yeah, I know, disgusting, as if this is what you fight for home health respite care for. FML. So beware of the can't STFU home health nurse. To them, working home health is as if they’ve just arrived to a mental health meeting. And you, the parent, are their therapist. 

To them, they are not on a job that they're being PAID to do. It’s unknown what the etiology of the can't STFU nurse is. It could be Bi-Polar or ADHD. Or just bat shit crazy. The bottom line is: A GOOD caregiver comes to work and asks how patient is doing, what meds were given, what patient health and behavioral status is. There is always time for a little get to know you talk or ice-breaking comedy after a week of hell, which is fine, and nice, so long as it isn’t burdening family members or delaying other nurses coming off shift. A GOOD caregiver or nurse is focused on patient care. Not burdening the family with their personal problems. 
Of course there are exceptions, for instance if a nurse has worked with you for several years and you become like family and the nurse is generally mentally stable and kind and is a great nurse....then, well, okay, then it's okay to sometimes listen to their problems out of respect and kindness for all the hard work they've put into helping your loved one. 

4.    Always late. This nurse always has an excuse. Either it's the weather, the traffic, the alarm clock didn't go off, they were up late at a special party for a special occasion, the line at McDonald's was too long, whatever. 
 I'm NOT talking about occasional lateness, which happens to the best of us. I'm talking about the type of nurse who is ALWAYS late. I’m talking 15-30 minutes late. You know the type. NO shame. And there is always a ridiculous, dramatic excuse, as if they’ve got an excuse list they play off until it's so worn down they have to create a new portfolio. A GOOD caregiver or nurse is nearly always on time. Ironically, the same nurse that will ALWAYS be late for their job, will always be ON TIME to send in their work hours or ask for more shifts. Oh yeah, you know the type. 

5.     Always asking for something or snooping around your house.   Can I borrow this or that from your house? Hey that's a nice tool, that's a nice pie dish, that's a nice CD, hey I like that movie and oh, what are you cooking for dinner????...These are usually nurses you will find working for a NURSING AGENCY because the agencies don't pay crap and attract the bottom of the barrel nurses.  You need to remind this type of nurse that this isn't a hospital or skilled nursing facility.  This is your PRIVATE home. They need to respect it. At some point you may catch them sitting on your couch, reading your husband's firefighter magazine, while your autistic child is sitting in a chair across the damn room. And yes, this actually happened. It was the same nurse who was always late. No longer here thank God. 
Then there's the nurse who asks can I get off early? Can I come in later? Can I pick up another shift, and well, yeah I know I'm always late and claim extra hours but I need the money and I know if you complain then the state will think there's something wrong with the parent instead of me... oh, and BTW, I forgot my lunch, do you mind if I eat some of your food? I noticed you made a pie and I already took a bite...and 

I'm going on a date after I get off, can I take a shower here? Do you mind if I bring along my friend next shift? My wife? My kids? Can I bring my Christmas presents to wrap? Can I use your air compressor, I have a flat tire? Can you drive to the nearest hardware store and pick me up some jumper cables, my battery is dead. Hey, I like that juice you bough can you pick me up some next time you go to Trader Joes? Gosh, I wish I had a home like this, you’re so lucky, wow, nice pool, wish I could go swimming.  

YES: These are actually things some past caregivers and nurses have said and done in the past. So weird. And drives you nuts. Thank God for the good caregivers/nurses. They are such a blessing. 

  1. Got no skills nurse. This caregiver or nurse is a puzzling presentation. The caregiver may have 13 years experience and a degree from a nursing school, but they don’t know how to give oxygen, don’t understand what a seizure is, can't brush hair, don't know how to properly brush a patient's teeth, don’t understand how to give medications (i.e.. they plop whole pills onto a spoon of peanut butter and stuff in patient’s mouth, with the peanut butter stuck on palate, patient gagging, and they keep stuffing more peanut butter in—just clueless). Don’t bathe or clean patient properly. Leave poop hanging off the buttocks. Then wipe it with the clean towel you just hung on the rack two hours ago. This caregiver is also the type that thinks a proper bath is a 5-minute shower where water falls off the body in the absence of soap, leaves the patient dripping wet and then sprinkles the body with powder. This type seldom knows how to change a diaper. Diaper is always half on, too loose or too tight. Or backwards. They also can’t write proper nursing notes. Don’t understand ambulation therapy (walking) with a patient. Don’t know how to assist a patient in and out bed, bath or cars. Don’t understand how to monitor side effects of medications. A GOOD caregiver or nurse has got GOOD skills. 

  1. Bad Attitude. Easily offended. Constantly depressed. Constantly complains. No sense of humor. Negative. Families who fight for in home nursing respite care are living with a disabled or elderly relative who requires constant care. We are often tired, cynical and depressed enough. We don’t need someone paid to help, entering the home and tripling the stress. Any caregiver or nurse that views the patient in a negative light or says negative things about the patient’s health status--should be terminated. Also, nurses who judge or gossip about patient or family are bad people to have around.  A nurse should be loyal to the family, especially the patient. Nurses and caregivers are expected to protect the privacy of both patient and family.  Recall HIPPA. A GOOD caregiver or nurse is positive and displays a helpful, supportive personality. Above all, a good caregiver/nurse is always the patient’s cheerleader. Cheering for hope, healing, comfort and happiness.
  2. Resents correction. Can't take the slightest criticism, even when caught doing goofy things. Looks away from you while you're confronting their goofy behavior. Twists things around. Look for this too: I caught a nurse once calling my autistic son "a bad boy." I immediately confronted him. As I tell him that his words weren't professional, he looks at me and says in  SING SONG VOICE, "Are you feeling OK today, Kim? You don't look well." It doesn't take a psychologist to see this kind of manipulative freak. He tried to flip the script, so that I would be so offended or shocked that we would no longer discuss his inappropriate words to my son. He's long gone, no worries. 

Finally, remember if you are getting nurses from a home health agency there is supposed to be a Director of Nursing (DON) who is in charge of these nurses who come to your home. Make sure you get her or his contact number in case you have any concerns. If you live in California, and get independent nurse contractors from the San Diego Regional Center, the Regional Center doesn't provide RN supervision over these LVNs, nor is their a nursing care plan in place. For some reason the San Diego Regional Center has flown under the radar with this for many years, which is interesting, because if a nurse agency sent LVNs they must have an RN supervising them and have a plan of care in place for the LVNs to follow. And if you placed your loved one in a skilled nursing facility or other residential placements, there is oversight of nurses. Not so with the California Regional Centers. They don't provide an RN to supervise their independently vendored LVNs or write a nursing plan of care. Funny how that works. 

All in all, let's remember there are more GOOD caregivers and nurses than BAD ones. It’s equally important to remember BAD ones can seriously harm or neglect your loved one when they feel they don't have to answer to a registered nurse. That's why it's important to have a Registered Nurse as a supervisor and point of contact for Licensed Vocational Nurses when they are in your home. 

On that note: A GOOD caregiver or nurse is a blessing. Treat them well. Hopefully, this list will provide insight into identifying GOOD caregivers for your precious loved one.
Kim Oakley

March 3, 2012

No Justice for Severely-Autistic Adult in California

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To understand this case see the Feb 24th, 2012 story: “Basic Police Work Ignored in Autistic Patient’s Suspicious Death”, written by Ryan Gabrielson of California Watch. Or watch video titled, “Manner of Death Undetermined” on You Tube.

If you’ve ever wondered what happens to severely-autistic people as they age, in the absence of adequate care and support, this is an eye-opener. The following excerpts are based on true, factual events, with a few speculations woven in.

Van Ingraham is a severely- autistic man who had his neck broken in 2006, while living at Fairview Hospital, one of California’s Developmental Center’s that serves the forgotten population of adults with severe autism and behavioral issues.

Johannes Sotingco is a caregiver on duty the morning Van’s neck is broken.

Supervisor—if you can stomach calling her a supervisor— Florens Limbong, is also on duty.

Sotingco’s shift began at 10:30 pm that night.  He works an 8hr shift, so it ends at 6:30am.

At around 1:00 am, that June 6th, 2006, Limbong recalls Van is up from bed, pants wet. It is unclear who changes him. Either Sontingco or another caregiver named Tan.

For the next 2 ½ hours, Van is reportedly up again, up and down the hallways, banging on nurse’s windows, making noises, pulling down pants, etc…His normal antics, by no fault of his own. He’s severely-autistic, remember.

Cargiver Sotingco has to “re-direct” Van several times during this 2 ½ hr period. It must have been mentally and physically exhausting. Had Sotingco been sleep deprived? Nobody in charge of investigating this case at Fairview probably has ever asked.

About 3:30am, Van is reportedly back in bed. Sontingco can finally get a break. So he thinks.  It won’t be long before Van is up again.

Around 4:20 am, Sotingco is told he needs to clean up another client’s “smeared feces” in another room.  Surely the thought of cleaning up someone else’s fecal matter, added to the internal stress saturating Sotingco’s evening.

Around the same time, Van pops up again, apparently having again urinated in his pants. Sotingco must’ve been fuming. My life is nothing but shit and piss. He starts to look at Van and the man with feces on his hands as sub-human. He is growing fed up with this job. He’s been doing it a long time. Surely, he is better than this. Screw these retards, he’s thinking (please note I say this based on media reports and years of listening to people who care for the severely-disabled. They say things like this). I’m sick of them all. Tired of the piss and shit, dressing, feeding; cutting toe nails. 

Back in Van’s room again, when nobody is looking, Sotingco orders Van to pull up his pants. He thinks about the “smeared feces” waiting for him in the other room. Damn it. I’m so sick of this. Just pull up your damn pants you idiot! He gives Van a final warning. “Get your pants on!” Van, terrified by Sontingco’s tone, freezes in fear, does not comply. Sotingco can no longer take it. Sontingco SNAPS.

Sotingco moving behind Van, grabs Van with one arm,  yanks Van by the back of his hair, with opposite arm, pushes on his back, hyperextending Van’s neck, then thrusts Van  forward, in an awkward position, forcing Van to face the ground to see where his pants are by his ankles.  “See your pants at your ankles!” Sotingco quietly yells into Van’s ear. “Pull up your pants.”  Van still doesn’t comply. Sontingco, Van’s hair clenched in his fist, begins to violently shake Van’s head back and forth. Van screams.

Sotingco takes him to ground (he uses an approved technique with a new twist), trying to quiet him.Shut up!” he tells Van. A blind man, nearby, hears the entire scenario go down. Van stops screaming. Sontingco settles into a calm, charming and covertly cruel demeanor, as if this isn’t the first time he’s had to show one of these idiots who the heck is in charge. After all, he’s not paid enough for this kind of work. It’s not his fault these imbeciles are so screwed up. It’s what life dealt them. Why can’t they do as they’re told! Sontingco is a classic abuser type. Finds work with vulnerable people. Has a dual personality. Charming, but covertly cruel. He will NEVER acknowledge the damage he does, did or will do. Not even when he’s caught and thrown into a cell for the rest of his life.

Fact: Johannes Sotingco has previously been investigated four times for his work as a caregiver at Metropolitan State Hospital.  But Fairview hired him anyway. Probably because each time, he had evaded charges of abusing disabled clients.  Sotingco appears an amazing con man who finds places to hide and SURROUNDS himself with submissive, sub-intellectual appointed and hired co-workers, who don’t know how to spot a guy like Sontingco or bring this piece of work to justice.

So when VAN SCREAMS. Limbong had run in. She finds Sotingco standing over Van. She doesn’t think much of it, because she’s not the thinking type. She blows it off, probably goes back to texting, chatting, checking her Facebook, or answering personal emails.
A little bit later, Sotingco, pretty sure he’s really hurt Van now, reports Van fell and--LATER--will pretend that's how he broke neck.  Sotingco blames (abusers always blame) Van’s alleged fall on his behavior of wetting self and running around, though there is no evidence of urine on floor, and NO EXTERNAL INJURIES showing a fall likely occurred the morning of neck being broken.

Despite the fact Van can’t move his neck isn’t drinking or walking, which is way off Van’s baseline behavior, Sotingco tries to cover his ass and phones in Van’s injury as “injury of unknown origin”. Limbong doesn’t dispute this. She’s submissive type, in a world of her own, waiting for the next paycheck to roll in, as the next patient rolls out, in a body bag.  The kind of person the Sotingco's of the world rely on so things are largely ignored.

Van in a state nobody can deny at this point, is taken to hospital where neck X-rays show he has suffered an injury unlikely caused by a fall. So what happened then?
MRI of cervical spine shows: “dislocation of C5 on C6 with bilateral --facet block, severe central stenosis and cord compressions through C4 through C6, disruption of ligamentum nuchae in C6-C7, prevertebral and epidural hematoma underlying congenital spinal stenosis.”

A doctor says this TYPE of injury occurs when the head is pushed forward and the body was pushed back with a force great enough to dislocate the vertebrae. Dr. Dobkin said it was not likely that the injury was caused by a fall or self inflicted due to the severity of the dislocation.

There is also NO evidence of congenital force or osteoporosis, which could explain a fall causing such injury to neck.

There IS however types of fracture dislocations seen on Van’s tests that are usually caused when the head is bent forward and the back is compressed. “Put on your pants Van!” “See them at your ankles.”  Those kinds of things usually occur when someone is hit.

The lead investigator on Fairview’s side, was a woman named Theresa DePue, a registered nurse, who has never previously investigated a suspicious death.

Sotingco and Limbong insist Van must have fallen. Blame. Blame. Blame. Anything but ourselves.

Investigators from Fairview, those brilliant minds, didn’t swab anything for fingerprints or for any DNA evidence. They did no basic police work on the scene.

Three medical experts said the 50-year-old autistic patient, Van Ingraham, likely had
been killed.

NO arrests have been made, though the state paid Van Ingraham’s brother $800,000 in a wrongful death suit. 

Johannes Sotingco has FOUR prior suspected abuse of client reports filed against him. Johannes Sotingco acknowledged that he was with Van at the time when Van screamed; he acknowledged altering records within 48 hours of the injury. Still, he's never been arrested.

WHERE IS THE JUSTICE?  Arrest Sotingco.

Meanwhile, FORGET stupid privacy laws. If my autistic son were in a state institution or group home, I would WANT (or install) hidden surveillance in every room he was in. In fact, I submit that should be a NEW law on the books. MANDATORY 24 -hour survilleance cameras in every room of every state institution where vulnerable disabled persons are. The videos would be carefully protected, so they don't fall into hands of people who don't need to see them. They should be there for cases like this, when nobody was there to protect Van Ingraham. God bless Larry Ingraham, a retired San Diego Police Officer. What a great man. What an incredible, loving brother. What an inspirational advocate for severely-autistic adults.

May God restore all the years the locusts have eaten, wash away all the tears that flow from a heart so broken. May God bless and prosper Larry Ingraham and his family and bring to justice those who have harmed his sweet brother.

Kim Oakley, mother of severely-autistic  son.

Here's latest fiasco. Someone should be INVESTIGATING the employees at Ca. Dept. of Health who are too lazy, incompetent and unfit for their fancy titled positions, to solve crimes committed against vulnerable disabled adults hidden away in institutions. This is a NATIONAL DISGRACE. CALIFORNIA has failed the disabled population over and over and over again. The etiology of this is BAD people in key positions that aren't doing their F%^$#@#job. 

Historical Background of how some caregivers actually BRAG on line about how they "beat retards"...A Disabled Boy's Death, and a System in Disarray - New York Times
Jun 5, 2011 ... By DANNY HAKIM ... June 9, 2011) ... abuse of residents within a span of two and a half months;  another employee bragged on Facebook about “beating retards.” ...
Always Check the Facebooks of people hired to work with disabled.