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April 25, 2014

Preventing suicide and murder in autism community?

Award Winning Non-Fiction Blogs - BlogCatalog Blog Directoryhttp://globalnews.ca/news/1292787/b-c-s-advocate-for-children-blasts-government-following-mother-son-murder-suicide/
                   



                          On April 2nd, 2014, (Autism Awareness Day), Angie Robinson, 40, and her 16-year old                              
severely-autistic son, Robert, were found dead in their British Columbia home. Police say it was a

                              murder-suicide. Apparently, at her wits end over inadequate services and the stress of caring for her severely-autistic son, she chose to check out.

Has anyone ever done a study to investigate what were the antecedents to this mother's behavior that led her to think the ONLY way out was to KILL herself and her autistic son? Has there ever been a study looking at HOW MANY parents have been pushed to brink of insanity that they felt this was the ONLY way out of such a confusing and hopeless situation? The answer to this question is NO.

                              It appears in Angie's case, after hearing no residential placements were available for her son, And after hearing that the only option she was given was to keep giving her son ATIVAN and herself ATIVAN, Angie decided murdering her son and killing herself was the only way out of the senseless pain she felt for her son and herself. It didn't have to end like this. There should have been supports and services in place to help her and her son live a life that would give someone hope that at least, during all this stress, there would be direct support and care to help her and her son get through these tough times.

                       Some ask, "Why did she kill her son?" How selfish! She could've dumped him off at the hospital, right? She could've given him up to social services, right? Before you judge her, consider it's possible she planned on only killing herself. And what would the hospital do? Drug him again with ativan? Use four point restraints? What would social services do? A severely autistic person is way out of their scope of expertise. No foster home could handle this level of autism. And advocates for the disabled have insisted closing down institutions, but have not yet created enough community homes for the severely-autistic.

Perhaps the torment of knowing how her son was neglected by agencies funded to help her and her son, and the broken record in her head playing the song, "There are no residential placements for your son...." may have tormented her. Where would he go? There is no home for him. Hospitals can't help him. Social services aren't helping. Nobody had any answers, even those paid to have answers. They were all useless. With their esteemed degrees, titles and awards. 

All these people. And NOT ONE  social worker stood up for Angie and her son>  NOT ONE demanded better care and treatment? Really? 

We have been fortunate enough to have at least ONE social worker at a hospital that went toe to toe with ER doctors to advocate for our son to get the medical testing he needed. And we have some really good regular doctors that treat our son and do try to help. 

Why do so many people who KNOW what is going on these cases play so stupid after the damage is already done? For so long those who pretend to help sit silent, afraid to confront their supervisors.....And so  we see cases where parents like ANGIE aren't getting the help they needed for their autistic children, despite years and years of crying out for help and reach a breaking point where they driven to madness....and despair beyond anything you could imagine...

Do I sound angry? Yes, I am.  Being nice doesn't save lives when you're dealing with apathetic and ruthless people. This system serving disabled is NOT NICE. It's not on your side. It's not their to help your child if your autistic child's level of care is something they don't want to provide. It's about being "cost effective" to the extent of costing people's lives. 

IT"S a BRUTAL arena. I've learned the hard way. I went into it thinking, great, finally people to help, and received a rude awakening. CRUEL. BENIGN NEGLECT. There are people working in the system serving disabled that abuse their power, are secretly sadistic and actually hate and resent the disabled. They work in these positions because they want to feel powerful and important and show the world how wonderful they are, but inside they are bullies. They know the population they are supposed to serve, but can swiftly deny services to, can't fight back, nor really speak up. And God help you if you're a parent who takes them on. They will hate you even more. 

It's NOT the autistic person's fault they need help.  It's NOT. They can't help it. THEY NEED EXTRA HELP. IF ANGIE would've had 24/7 1:1 support to HELP with her son, she and her son would NOT BE DEAD TODAY. WAKE THE F--- UP. Angie's case was not like other cases where the mom was mentally ill or some selfish rich woman and just couldn't take a 5 year boy screaming all day. This middle class hard working petite little gal toughed it out for a very long time with a very big boy autistic son. She did her best and cried out over and over again. And not one social worker saw her crisis and advocated for her son to get the extra help he needed. 

This mother was exhausted. She was tired of hearing nobody knew what to do, when they were being paid to do a job that was supposed to be helping people like Angie and her vulnerable autistic son. 

And then so many ask, why did she kill herself and her son? Well, think about it. This mom knew nobody did, was or would help him. And that inept people who would take over his care in a group home would only cover up caring for him properly, isolate, drug and shackle him. One can only imagine the confusion, distress and chronic emotional pain this mother and her son was in. Hopeless, exhausted and frustrated. Unless you have lived in this type of insane situation you wouldn't know. And don't blame it on the autism. The higher the level of care provided, the lower the behavioral issues become.

Autistic children and adults are NOT the problem. They deserve help. Parents need support. Better services. We need more advancements in medical treatment for autistic people in crisis. Not more f----ativan.

If you don't understand my rage right now at another senseless death in the autism community, it's because you don't understand the complex etiologies involved in this mom's tragic and desperate decision. While you sit calmly in front of the computer, feeling relaxed and focused, there are mothers who are on the floor right now, restraining their screaming autistic children, to prevent them from smashing their heads into the floor. There are others who have not slept sound for months because they're constantly interrupted with a behavioral or medical crisis. There are others who can't trust people to care for their autistic children because some people result to abusing them instead of helping them. There is nothing like autism. Mothers of severely-autistic children experience the same stress as combat soldiers, according to one research study.  I believe this is true because you are in a constant battle, from all sides, at all times, against unknown and known enemies and you never know what's coming around the corner. You never feel safe. You never feel fully supported or that your "buddy" or in this case, "autistic child" is fully protected. You never feel you can let your guard down. You lack sleep. You're constantly interrupted by loud sounds. Your arms and body hurt from having to physically restrain your child from self-harm. Meanwhile, the generals in charge sit safely and calmly sipping  a Cafe Mocha in meetings  to "discuss" a strategic plan, while you remain in the trenches.


                           
                             If only to reverse time. Give Angie and every parent who has killed themselves or/and their autistic child a hug. Tell her, "No, Angie. Killing yourself and your child is not the answer. That's what these sadistic freaks of nature would hope you would do.

                             Keep fighting!  There is light at the end of this battle. Don't give up! Stay strong!"

Look, I may be a Republican who is soon to turn Democrat...but I must agree with Hillary Clinton's statement it takes a village...yes it does and nowhere do we see this more evident in the severely autistic community....where the needs are so great and the care is so critical that it DOES take a village......

                             Would that have been enough? Who failed this woman and her autistic son? Who was getting paid, who was getting funds, who was not doing their damn job? Who was in charge of neglecting to provide this woman's autistic son the help he so desperately needed? What cubicle dwelling dipshit sat on their ass for years, reading their Facebook page and chatting with co-workers, while this woman and her son were suffering in ways that none of these idiots addressed?

                           Why wasn't Angie getting respite or behavioral support for her son? Who was her son's social worker? Did they help?  Did they even notice? Or were they too busy filling out forms. Pretending they were doing something.
                            Was the mom sleep deprived? Severely-depressed? Isolated? How many times had she begged for help?

                           Why wasn't there a residential treatment home available?  How much

                            funding was in place for autistic teens like Robert? How long did she cry out to the people she believed were there to help, but only heard,

                            "Sorry, no help for your son is available." Not even the medical professionals at the hospital did much, Here try some Ativan.....A lot of Ativan. Take some for yourself. Give some to your kid. Take care now, bye bye, sign here please. 

                         
                           There were signs things were going down hill fast......
                           In March of this year, Angie's son, Robert, smashed his head through the window of Angie's truck.

                          Imagine how seeing your son do this would fracture your heart and mind. Your child                           just bashed his own head through your car window. You are all alone in the car. There is no behavioral support person on board. No caregiver to help. You've got to keep your hands on the wheel, while he's bashing his head on the window.....shit, is there a place to pull over, I'm on the damn freeway....yep, those are scenarios that happen daily in the lives of some people raising severely autistic teens and adults, but you won't hear about it, until it's too late, because the people in charge of documenting these serious incidents, cover it all up, so they don't have to do anything. 
                          There is no end to this madness. 
                          How DESPERATE for adequate help would you be at this point? How hard would

                         you try and get help? Angie asked for help. And asked again. She didn't get it. 

                         Angie tried again. Robert spent time in the hospital. Hospitalized and tranquilized. Ativan,

                        to be specific. WTF? Ativan is the WRONG medication to treat challenging behaviors in autism.

                        Ativan is toxic to the autistic brain during a behavioral crisis. It has a paradoxical effect.

                        In treating aberrant autistic behavior.  Ativan is a RESCUE medication for SEIZURES only.
               
                        You do NOT use Ativan to treat the autistic person having a behavioral meltdown. You would only give ATIVAN if the person had one of the rarer types of epilepsy that triggered behaviors. Usually, behavioral outbursts are rooted in frontal lobe seizure activity, but it's complicated, because different seizures can also make the autistic person calmer. Only comprehensive neurological testing can determine which types of seizures are involved, and this is almost never done unless you fight for it, like you have to fight for everything when you have a severely autistic child.


                       Apparently, Robert was given a copious amount of Ativan at the hospital. Perhaps if the Canadian agencies had had the PROPER SUPPORT for ROBERT, the hospital wouldn't have had to dope him up with so much Ativan.


Upon release, his

                       mother given tons of Ativan to control Robert at home. The mom was also prescribed ATIVAN. So ativan was supposed to make it all better.....Recall Mom did NOT have adequate support at HOME to help her with her son. No wonder she chose ATIVAN. It didn't help. She lost hope.

                      While I'm not a fan of anti-psychotics, given my autistic son had bad reactions to many

                      (an oculogyric crisis and torticollis), you can give an anti-psychotic if you piggy-

                      back it with Cogentin. And don't overuse it. Use as a rescue medication only, if possible.

                      Seroquel, Risperdal with galantamine (4mg BID) are much better alternatives for an autistic behavioral crisis. You must stabilize the brain, not the body. Heal the acute crisis in the brain= reduce the behavior. Likewise, rule out UNDERLYING, UNDETECTED

                      medical issues. Was Robert in pain? Surely, smashing your head through a truck window

                     would warrant at least a CT scan of the head. Was it done? How about an fMRI?

                     I mean, if Robert was already loaded up with Ativan, you'd think at this point, what

                     the heck, he's already in the hospital. Let's do some flipping tests. Were tests done? Or was he

                     simply given, like so many autistic people in crisis, a quick fix chemical lobotomy, so he could be discharged and sent away to be someone else's burden? So much for carry the burden of others....


                    It's a win/win situation when an autistic person with challenging self-abusive

                    behaviors receives adequate behavioral, medical and social services.

                    Ignoring their complex needs is negligent. Ignoring the parent's cries for help is cruel.

                    Pretending there is a budget crisis is a con job.
       
                   Having Autism Awareness Month in the absence of awaken awareness is ridiculous.
             
               

                  Families raising severely-autistic children, teens and adults need relief. Trusted, trained

                  caregivers. Safe group homes. An UPDATED global medical standard of care for autistic patients with severe behavioral issues. And yes, we need effective, safe pharmaceutical drugs to target specific brain

                 receptors involved in autism and self-injurious behavior. Improved ABA for autistic adults.

                And so we have......

                At 11:56 pm, on April 2nd, 2014, Angie Robinson wrote her last Facebook post, "More, more, more needs to be done for our teens with special needs, they are neglected. Canada needs more residential and respite care for families hoping to keep their children at home."
                 
Raising a severely-autistic son, I can tell you supportive services DO HELP. I have fought and fought for years for adequate services.  It has not been easy. And there are a lot of other crazy issues, like retaliation from the very agency we thought was there to help our son.... we've had to face, but overall, adequate services save lives. We got doctors to write letter's of support. Thank God for doctors who GET it.

We collected evidence to support our son's level of care. Though the agencies controlling the funding for services continue to downplay our son's needs. You must keep fighting. This is a spiritual war as much as it is a physical one, which may sound strange to those who don't understand this, but if you don't, then think of your "fantasy movies" where good vs evil is always in play. Autistic people are special people, no matter how many issues they have. They are here to TEACH us love, tolerance and patience. They are here to teach us to HELP others and go beyond thinking only of our own goals, dreams and visions. Jesus sacrificed Himself for the whole world, the least we can do is sacrifice some of our own selfish needs to help those who are in pain and crisis.....if these agencies getting funds to help the disabled aren't willing to do this, and are going to continue making excuses, blaming the fake, manufactured budget crisis, etc...then they should find another profession. Quit lying to the world about what you are doing for the disabled, when we all see, every year, more and more families struggling to get the services they need for their severely autistic children.


                Rest in peace Angie and Robert, in your new home, may your lives never be                                 forgotten..............may the angels of

               heaven carry your souls to the throne of God and wipe away every tear.......






Sources: Erika Tucker, Global News
http://globalnews.ca/news/1292113/mother-son-murder-suicide-highlights-lack-of-autism-funding-in-canada/
             

             

               


             


               
               


             


                 

               


               
                   


                   


                       


                           

4 comments:

VMGillen said...

Amen.

M Davis said...

Hi Kim,

I've only just come across you blog and youtube videos but I think what you do is amazing. I have a close family member who is very similar to James and I know how much of a roller coaster life can be. It would be great to get in touch sometime.

M Davis said...

Hi Kim,

I've only just come across you blog and youtube videos but I think what you do is amazing. I have a close family member who is very similar to James and I know how much of a roller coaster life can be. It would be great to get in touch sometime.

M Davis said...
This comment has been removed by a blog administrator.
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