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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.


God can do anything, you know—far more than you could ever imagine or guess or request in your wildest dreams! He does it not by pushing us around but by working within us, his Spirit deeply and gently within us.” Ephesians 3:20 (MSG)

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).


“Those who sow in tears will reap a harvest of joy; for though they may weep while going forth to plant their seed, if they persevere, they will undoubtedly return rejoicing—bringing their sheaves with them.” Psalms 126



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:

    www.carlsonlabs.com/p-70-very-finest-fish-oil-lemon-flavor.aspx
  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:
    http://www.drlera.com/epilepsy.htm
  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.
    www.grandin.com/inc/squeeze.html

  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

Seven signs of a bad caregiver or nurse

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                          7 Signs of a BAD Caregiver or Nurse:


  1. Can’t get off phone. This type of caregiver is always on the cell phone. Constantly speaking on phone while getting PAID to protect and monitor elderly or disabled patients is disrespectful and unprofessional. There are rare exceptions.  For instance, my severely-autistic son is obsessed with walking. If a day shift nurse is walking 5-plus hours outside with my son, I don’t mind if nurse chats on a hands free cell phone, because it helps break the monotony.  However, if I observe a nurse arguing on phone, or otherwise distracted from my son’s needs—as in one case when I witnessed my son pick up leaves off ground and stuff them in his mouth, and the nurse didn’t even notice, no more hands free cell, it’s over. A GOOD caregiver or nurse doesn’t use their cell phone during a shift, unless it’s a necessary and urgent communication. Or a special circumstance as noted above.

2.    Can’t stop texting: This caregiver is always texting. This is WORSE than talking on cell phone. Why? Because caregiver’s hands aren’t ready to react quickly, in the event a patient, let’s say, like my autistic son, suddenly hits self, bolts into street, eats foreign objects, or touches something hot. Texting takes the person’s hands, eyes and focus OFF client or patient. The can’t stop texting caregiver is pre-occupied with his or her own issues, instead of doing the job they are PAID for, which is to be involved in the patient’s issues. The can’t- stop-texting caregiver is better suited to work as a Text Chat Operator.  A GOOD caregiver or nurse does not constantly text while on duty.


3.    Can’t shut-up. This 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 subjects other than patient status, needs and care. Or they sit down and begin talking about personal problems. “My day was so awful,” they might say. And then waste 25 minutes going on about what happened. They may also ramble about who they saw, what they ate, or how they did something. There is no end to the talking. To them, it’s as if they’ve just arrived to a social support group. It’s unknown what the etiology of the can’t-shut-up personality is. It could be Bi-Polar or ADHD. 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 talk later, 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 and doesn’t burden others with non-stop talking.


4.    Always late. Not occasional lateness. This type is ALWAYS late. I’m talking 15-30 minutes late. You know the type. And there is always a ridiculous, dramatic excuse, as if they’ve got an excuse list they play off. A GOOD caregiver or nurse is nearly always on time.

5.     Always asking for something. NOT occasional asking. ALWAYS asking. Can I have my check early? Can I borrow this or that from your house? (I worry about this type because now you’re wondering if they’re scoping out personal stuff in the home). Can I get off early? Can I come in later? I forgot my lunch, do you mind if I eat some of your food? Do you mind if I take a shower here? Do you mind if I bring along my friend? 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. Gosh, I wish I had a home like this, you’re so lucky (coveting the home or things of a patient is a major RED FLAG). These are actually things bad caregivers and nurses have said in the past. Nurses that no longer work with our autistic son. If I can spare ONE family the misery, I’m happy. A GOOD caregiver or nurse never BURDENS or BADGERS family with constant requests, personal wants or repeatedly asks for special favors.

  1. Got no skills. 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 and don’t understand how to give medications with food (i.e.. they plop whole pills onto a spoon with 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. This type of caregiver’s idea of a bath is a 5-minute shower where water falls off the body and then it’s out, towel dry, and on goes a sprinkle of powder. They don’t know how to change a diaper. Diaper is always half on, too loose or too tight. They 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. Skills like health monitoring, personal care, patient safety, wound care, nutritional knowledge, medication management and patient assistance. Skills they practice; take pride in and improve on.

  1. Bad Attitude. Easily offended. Constantly depressed. Constantly complains. No sense of humor. Negative. Families living with a disabled or elderly relative who requires constant care are often tired, cynical and depressed enough. They 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.  You can’t trust them. They aren’t loyal. Nurses and caregivers are expected to protect the privacy of both patient and family.  A GOOD caregiver or nurse is always positive and displays a helpful, supportive personality. Above all, a good caregiver is always the patient’s cheerleader. Cheering for hope, healing, comfort and happiness. Indeed, a positive, uplifting attitude about patient is so critical, I’d tolerate a can’t-shut-up or always late nurse, as long as they were good in every other way, with my son. That’s how much I value a positive, uplifting attitude.

Finally, remember there are more GOOD caregivers and nurses than BAD ones. It’s equally important to remember BAD ones can seriously harm or kill your loved one. So don’t be too cynical or too naïve. A family should honor and respect good caregivers and nurses. Little things matter. I keep a candy jar in my son’s room for nurses. I thank nurses for good things done with my son. A GOOD caregiver or nurse is a blessing. Treat them well. Hopefully, this list will provide insight into securing GOOD caregivers for your precious loved one.

March 6, 2012

To Catch A Bad Caregiver: A Reality Show Idea

Award Winning Non-Fiction Blogs - BlogCatalog Blog DirectoryHow Long Will the USA Tolerate Senseless Abuse and Neglect of Disabled Persons Residing in State and Federally- Funded, Out of Home Placements?

Man accused of beating autistic adult with metal spoon ... Plowden was a worker at a group home run by the May Center for Autism Spectrum ...Jan 3, 2012
claytodayonline.com/.../250-man-accused-of-beating-autistic-adult-with-metal-spoon

Aug 4, 2011... the December death of an agitated 27-year-old autistic man under his ...
shows culmination of a pattern of abuse and neglect. www.silive.com/eastshore/.../kin_cite_abuse_and_neglect_in.html -


Time and again, when Bucks County investigators asked how a helpless, autistic
man had been left to die last month in a sweltering, parked ...nobody could answer why.
articles.philly.com/.../24971118_1_heat-death-autistic-man-care-dependent-person


Feb 2, 2012 ... Local woman denies locking autistic man in basement ... Marcia Morris, 64, is
charged with reckless abuse, neglect or abandonment of a ...www.wyomingnews.com/articles/2012/02/02/.../19local_02-02-12.txt -



Aug 3, 2010 ... The Woods Services is a treatment home for those who have autism and other
disabilities . A 20 year old man died because he was left in a hot car ...

Caregiver Charged With Hitting Autistic Woman ... May 11, 2001: Man Charged
With Abusing Autistic Woman; May 11, 2001: Arrest Made In Autistic Abuse Case ...
www.thebostonchannel.com/news/769426/detail.html -


KentuckyFormer caregiver pleads guilty to abusing autistic teen .... July 26, 2011

Nov 11, 2008 ... Voiceless and abused. Woman allegedly raped by caregiver may have ....
assault for allegedly attacking an autistic teenager at another facility.
o.seattlepi.com/local/387252_rape11.html


Jun 14, 2011 ... Disabled Children Abused and Beaten in State Institutions · Caregiver Charged
in Death of Autistic Man Was [pre-occupied] with Using Her Cell Phone


The caretaker of an autistic patient has been charged after a videotape showed
him hitting the man with a plastic hammer. ... By Pearce Adams; Anderson
Independent Mail; Posted July 31, 2008


Jul 30, 2008 ... Man Accused Of Abusing Autistic Client ...   Parents Use Camera To Catch Caregiver Abusing Son ...
www.wyff4.com/news/17041320/detail.html -


 

Washington Post, March 14, 1999; "Elroy lives here. Tiny, half-blind, mentally retarded, 39-year-old Elroy. To find him, go past the counselor flirting on the phone. Past the broken chairs, the roach-dappled kitchen and the housemates whose neglect in this group home has been chronicled for a decade in the files of city agencies. Head upstairs to Elroy's single bed”.
Source: By Katherine Boo Washington Post 3/14/1999. Staff Writer Sunday, Page A01  



ENOUGH is ENOUGH.

Here's an idea for an American Reality TV show: It could be called, "TO Catch a Dangerous caregiver."  The reason I say dangerous and not bad, is because a caregiver can be bad, just lazy, etc..and not be a threat to patient health and safety. A dangerous caregiver however, is someone who fails to perform duties necessary to preserve life and health. Ie...NOT giving medications, but lists in nursing/caregiving notes, that they gave meds. Or, Lists that they put lotion on patient or turned patient, but they didn't. and patient ends up getting bed sores that lead to sepsis infection that leads to death. Or a dangerious caregiver is someone who doesn't monitor patients respirations, but says in chart they do. Or they steal patient's medications or medical supplies. These people are hard to catch. You have to KNOW what to look for and what's expected for these people in their line of work.
 
1.                      Mar 12, 2011 ... A group home in Hudson Falls, N.Y., where a worker was said to have sexually
assaulted a ... A Case History: Roger Macomber ... over the past year has found
widespread problems in the more than 2000 state-run homes. www.nytimes.com/2011/03/13/nyregion/13homes.html


Here’s how it could go down.  Okay, I’m no expert in this, but it seems a reasonable place to start brainstorming.

  1. Put out ad for caregivers for non-verbal, severely-disabled or elderly patients on-line and in newspaper ads.


  1. Caregivers are interviewed on phone by actors posing as family members of patient.

  1. At no time are caregivers persuaded or coerced in any manner to do job. They are given an opportunity to work. If they choose to later commit a crime, it’s because they are willing and able to commit crime, given the right setting, and choose to do so.

  1. Caregiver is invited to home, for a trial patient care shift.  Job is a private-duty job. (Caregiver is not working for an agency. They are hired directly by family, a common practice throughout USA).


  1.  Actor/actresses pose as fragile elderly or severely-disabled patients.  

  1. An hour after caregiver arrives for shift, they are told will be left alone with patient, while family goes shopping for the day. Will be back much later.  Or you could tell them before they arrive, they will be there alone.

  1. Prior to family leaving, caregivers are again reminded of SPECIFIC, strict instructions as to what their job is when they are there. Hence, there’s no confusion of what they are expected to do.

  1. Medications (fake) are expected to be given. Special foods, etc...Making Medication errors and stealing meds from patients is not uncommon in bad caregivers.

  1. Family takes off. Patient’s room is filled with nice things.

  1. Cameras are all over house. Watching caregiver’s every move.  

Sure, this stuff isn’t as exciting as Dancing with Stars, but let me remind you, every single person reading this, either knows or will know of someone who needs respite care, at some point in life. It could be your grandma, father or auntie.

How many caregivers could be caught BEFORE they seriously harm or kill severely-disabled or elderly persons? And we have to read about it in news.

How many sting operations have been done to address the epidemic of abuse and neglect of disabled and elderly in home health and out of home placement settings? We find sting operations busting prostitutes and drug dealers, but we aren’t going after people who abuse and neglect disabled and elderly? What the hell is wrong with this picture? It’s easier to bust prostitutes. It takes more to catch a bad caregiver.

A reality show like this is way over due. For years, we have read countless news stories illuminating senseless abuse and neglect of disabled and elderly in this country. For years, not much has changed. This will not change, and in fact will become worse, if we do not expose and catch dangerous caregivers. A reality show is a great place to start catching.

I recall an investigative news piece about chickens being abused. Are we concerned about abuse and neglect of humans in this country? I’m so sick of watching news and reading reports of abuse and neglect of autistic and other vulnerable populations. Nothing is changing. People want to see change.  One reason it’s not changing is because people aren’t sure how to handle this. Or do a sting operation. You’ve got privacy laws, nursing agency involvement, etc...

Abuse and neglect of disabled occurs across settings. However, because of the isolated setting of home health care, caregivers most likely to abuse will seek out positions where there is little, if any monitoring. That’s where private duty care comes up. Private duty care is where a nurse isn’t working through a nursing agency, though abusive caregivers can and do work inside nursing agencies, group homes, nursing homes, state hospitals and Developmental Centers.

Sting operation involving caregivers working Private Duty Care positions is therefore, least likely to become a legal nightmare for a network.

A reality show like this wouldn’t be looking for MINOR things, by the way. Nobody is mad when a caregiver is picking their nose, eating 4 candy bars they brought for themselves or answering an occasional text.

The show would be honing in on caregiver behavior that is an imminent and exigent circumstance, a clear threat to patient safety. It could be the caregiver is specifically told the patient could “aspirate.” Or has subtle seizures that must be monitored. If then, let’s say, during sting you observe this caregiver glued to a computer screen the entire shift, not once checking on patient, they’re showing patient neglect. Or you observe caregiver stealing controlled substances like Valium or pain medications (all fake on show, of course to reduce liability).

So that’s it. That’s my pitch. I don’t see any other way to reduce the mindless abuse and neglect of autistic and other vulnerable populations.  

See You Tube video: “Bad Caregiver of Autistic Young Adult Caught on Tape” to get a small sample of what you may find when observing caregivers in a home health setting. CATCHING THE dangerous employees who work with vulnerable citizens is what is needed BEFORE we read more headlines on the neverending abuse and neglect.

Current laws protecting disabled aren't working. Obviously. Hence, the idea of submitting a bill to congress that would force state and federally funded homes serving this population to have cameras installed for PROTECTING this vulnerable population supercedes idiotic privacy laws that stop the use of cameras. When you walk into a bank or a 7-11 you're on camera, but somehow it's a violation of privacy to protect disabled people who can't speak for themselves inside state run group homes and hospitals/ Oh please.

1.                            

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 young adult son.


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.” ...
Lesson:
Always Check the Facebooks of people hired to work with disabled.
www.nytimes.com/.../boys-death-highlights-crisis-in-homes-for-disabled.html

March 2, 2012

Over-vaccinated Animals, Autism and SIDS

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Over-vaccinated Animals, Autism and SIDS.

This is not an anti-vaccine article. It's information that anyone can cross check to verify. It's interesting. Things to consider, not to ignore.
“In veterinary medicine, evidence implicating vaccines triggering immune-mediated and other chronic disorders is compelling,” said Dr. Jean Dodds, a Doctor of Veterinarian Medicine (DVM).   

Ironically, whenever parents, health advocates or other professionals provide evidence about vaccinations triggering immune-mediated or OTHER chronic [autism spectrum] disorders, it’s not so compelling.

In regards to vaccines and animals, Dr. Dodd goes on to say, “The onset of adverse reactions to conventional vaccinations...can be an immediate hypersensitivity or anaphylactic reaction...which can occur acutely (24-48 hours afterwards), or later on (10-30 days) or in a delayed type immune response usually caused by immune-complex formation.”  

So, if my dog has a bad reaction to a vaccine, I could see this reaction anywhere from immediately to 30 days later.

Are vaccines given to humans as risky as vaccines given to animals? While dogs don’t get the identical vaccines as humans, they do receive vaccines with SIMILAR ingredients found in human vaccines (i.e...aluminum, thiomersal [organomercuric compound], formaldehyde, hexavalent chromium, and lead, paraffin oil, polymers, acrylic).

Haven’t drug manufacturers removed mercury from vaccines?

“Although it is now claimed that most dog vaccines do not contain mercury, it is sadly true that most actual doses do contain mercury.” Source: http://www.alternativevet.org/FAQ_vaccination.htm. I wouldn’t be surprised if human vaccines are still plugged with mercury, as it’s a cheap preservative. But it’s not just mercury that is of concern here.

While the question whether mercury in vaccines triggers autism is said to have ended, the question of Delayed onset vaccine-associated anaphylaxis, is just beginning.

Well, I’ve never heard of a delayed onset vaccine-associated anaphylaxis.

Just because you haven’t heard it, doesn’t mean it doesn’t exist.

According to forensic research,Anaphylaxis shows immediately or in few minutes after the [vaccine] exposition; in most of cases by 15-20 minutes. Reactions after 60 minutes from the exposition [also exist]...More rarely death [following the vaccine] occurs by 24 hours.” http://www.intechopen.com/download/pdf/pdfs_id/19162.

Theoretically, it’s possible if a baby gets vaccinated at 2pm on a Monday afternoon, they could present with delayed onset anaphylaxis at 2am that night, and be declared dead due to SIDS within 24 hours.

How many paramedics, police investigators, doctors or coroners doing a post-mortem examination, consider vaccine associated anaphylaxis in SIDS?

Forensic Case Example: “A fatal case of a 3-month-old female infant, who died within 24 hrs of vaccination with hexavalent vaccine is presented. Clinical data, post-mortem findings (acute pulmonary edema, acute pulmonary emphysema), quali-quantitative data collected from immunohistochemical staining (degranulating mast cells) and laboratory analysis with a high level of beta-tryptase in serum, 43.3 microg/l, allows us to conclude that acute respiratory failure likely due to post hexavalent immunization-related shock was the cause of death.”

SOURCE: Forensic Science International (2008)
Volume: 179, Issue: 2-3, Pages: e25-e29 PubMed 18538957 OR http://www.fsijournal.org/article/S0379-0738(08)00180-1/abstract

Naturally, Centers for Disease Control downplays the SID and Vaccine connection.
“From 2 to 4 months old, babies begin their primary course of vaccinations. This is also the peak age for sudden infant death syndrome (SIDS). The timing of these two events has led some people to believe they might be related. However, studies have concluded that vaccinations are not a risk factor for SIDS.”  http://www.cdc.gov/vaccinesafety/Concerns/sids_faq.html.

Naturally, National Institute of Child Health and Human Development downplay AUTISM and Vaccine connection:

 “Because the symptoms of autism begin to occur around the same time as the child’s MMR vaccination, parents and families see the vaccine as the cause of the autism. http://www.nichd.nih.gov/publications/pubs/upload/autismMMR.pdf.


Dr. Sanjay Gupta, Chief Medical Correspondent to CNN, plays it safe and neutral—though he’s a professional expected to evaluate a health issue—as he cites others who downplay autism vaccine connection in a story posted in 2008 on his blog:

Within 48 hours after receiving her vaccinations, Hannah, then 19 months old and by all accounts a normal little girl, developed a high fever, inconsolable crying and some signs of regression, including difficulty walking and speaking... Gupta is quick to add: “The Centers for Diseases Control, American Academy of Pediatrics, Institute of Medicine and other prestigious medical organizations maintain there is no link between vaccines and autism.”

Back to animals: “An in-depth study found adequate titers against canine distemper virus in 83% of a very large group of dogs vaccinated more than 4 years beforehand.” That means the dogs didn’t need more shots. “It’s crucial to monitor serum antibody levels for assessing immune memory response.” 

If titer tests are indicated for puppies and dogs, why aren’t titer tests indicated for human children and adults? Why give or receive more vaccines if a body already has enough from prior vaccines? This would lead to over-vaccination and probably quadruple risk of adverse reactions.

Concerning acute, delayed or chronic adverse vaccine relayed reactions, how would a non-verbal baby, non-verbal elderly person, or non-verbal autistic individual communicate they’re having an adverse or delayed reaction


They can’t. 


SO, they suffer in silence, unless someone is vigilantly watching. The “someone” watching is often told “don’t worry, vaccines are safe.” After a vaccine, they don’t even think about it. How many caregivers, doctors or nurses working in rest homes, group homes, schools and state-institutions for developmentally disabled or home health settings are told to monitor for adverse reactions after vaccinations?

Protecting anybody from over-vaccination is critical, especially more vulnerable populations.

During major self-abusive meltdowns that have landed my severely-autistic son in hospital for treatment and evaluation, I’ve had, on occasion, nurses immediately start pushing vaccines. 


Though I explain how dangerous it is for my severely-autistic son to have ANY foreign substances added to his already vulnerable mind and body, some still push vaccines. 
I appreciate doctors and nurses who respect me, as a parent, having the right to protect my son. And who actually read a wide variety of research and don’t blindly accept abstract information or convoluted media sketches available to them. 


Look, vaccines aren't bad, but for some children and adults they can do much harm. That is the reality that must be considered. 

Take a look at this muddled media presentation on autism and vaccinations:
A new study published in the January 2008 issue of Archives of General Psychiatry found the prevalence of autism cases in California children continued to rise after most vaccine manufacturers started to remove the mercury-based preservative thimerosal in 1999, suggesting that the chemical was not a primary cause of the disorder.




An article in the March 10, 2006 issue of the Journal of American Physicians and Surgeons shows that since mercury was removed from childhood vaccines the alarming increase in reported rates of autism and other neurological disorders in children not only stopped, but actually dropped sharply - by as much as 35%.


Health-damaging re-actions from vaccines can no doubt be insidious. Research reminds us reactions may appear up to 30 days AFTER being vaccinated. Clearly, in certain populations, a titer lab test could prevent adverse reactions.

According to Medline Plus, Trusted Health Information for You:

“Antibody TITER is a laboratory test that measures the presence and amount of antibodies in blood. The antibody level in the blood is a reflection of past exposure to an antigen or to something that the body does not recognize as belonging to itself.”

In some situations, your health care provider may check your antibody TITER to see if you had an infection in the past (for example, chickenpox) or to decide which immunizations you need.” 


Ask your doctor if you’re autistic child or anyone else you are concerned about, is medically exempt. Epilepsy, severe allergies, and siblings' previous adverse reactions are a few conditions in child or family history which may increase the chances of an adverse reaction, and thus qualify for a medical exemption
              

Additional sources:
  1.  
    www.whole-dog-journal.com/.../Annual-Pet-Vaccinations_20036-1.html
  2. Many veterinarians believe the practice of annual vaccinations is an unnecessary
    evil, responsible for such diseases as allergy, seizures, anemia, even cancer. www.healthyhappydogs.com/Vaccinations -