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Showing posts with label severe. Show all posts
Showing posts with label severe. Show all posts

Monday, April 8, 2013

Bonding with Family Members on the Autism Spectrum


Not all parents are bonded to their children with disabilities.  I've always tried to understand why.  I have always been exceptionally bonded to my children.  But, when the bond is broken, for whatever reason, it really hurts. 

Some parents can not accept or cope with the disability of their children.  It is such a drain on one's life.  The government rules and restrictions often make it very difficult for the natural parent to get enough help.  This is a form of punishment on a parent, so one can give up. 

Many disabled people, who are placed, do not have family visits, or have negligible visits.  I think some parents need to cut off the tie in order for their lives to go on.  Everyone has different levels of emotional tolerance.

In my case, I take my disabled son home several months out of the year.  He needs total care, so it is hard, especially when there are so many behavioral issues.  But, he craves to be with his family and I have a tight bond with him, almost on an ESP (Extrasensory Perception) level.

I do know that these disabled people, no matter how severe they are, deep down they want their family.  I've seen some Disabled Clients call out for family members in times of medical emergencies, but, no family members were at their bedside.  I felt so bad for them.  You wish you could comfort them, but, no one can replace a parent or family member. 

Severe Autism is one of the worst disabilities because it often comes with Seizures, lack of Speech and Communication, and Severe Behavior problems.  No one seems to have the time or patience for these poor people who are often very intelligent and very aware of their problem, but can not cope themselves.  Often there is a sense of fear about them, which can cause the ritualistic behavior as a coping mechanism. 

It is not an easy life for the family and when things do not go right, it can be a big emotional blow that can be devastating.  It takes a long time to heal, but with people on the Autistic Spectrum, there can be many devastating events.

Tuesday, June 7, 2011

Placement Horrors for the Developmentally Disabled

Just when I thought I heard everything, I read this horrific news article:

http://www.nytimes.com/2011/06/06/nyregion/boys-death-highlights-crisis-in-homes-for-disabled.html?_r=2&pagewanted=all

I also have experienced similar nightmares with my own son who suffers from severe Autism and Crisis Behaviors, but, I was able to rescue my son from these "respite" places before it was too late.

This poor helpless population who suffer from the mental torture of Autism are put into placements where they are brutalized at the hands of ignorant, careless caretakers and former criminals. These poor victims can not even talk to express their plight.

I have witnessed this type of abuse and neglect of my own son in an out-of-state Institution and had to go through hell to pull him out after 3 horrific months of his deterioration.

This is a very extreme and complicated group of disabled people who can not control their emotions. People and Professionals do not understand Severe Autism or why they are this way. From what I have perceived of my own son with this extreme type of Autism is that they are "scared", "afraid to take one step". Their lives revolve around "perfection and order". If anything disrupts this "order", they "lose it".
They can not cope. Drugs often make them much worse.

You have to imagine what they feel. It is very complicated. All their senses are off. The way they hear, see, smell, taste and feel are distorted. They don't feel pain the way others do either. And, as they grow, they try very hard to figure out how to cope. But, almost every time, one bad habit broken turns into another bad habit...it doesn't go away.

So, how can anyone want to hurt someone suffering with the worst imaginable pain, the pain of "Severe Autism"?

Reading that so much money is put into these Institutions by the Billions and they wind up hiring anyone willing to take the job without background checks doesn't seem real. And, to stifle anyone witnessing atrocious abuse is beyond morality and ethics. This is happening in America, not a third world country.

Are we evolving backwards in time? That is what it seems. Our country is deteriorating. We are allowing the most helpless and most vulnerable population of our country to be exposed to abuse and neglect and forced to keep it quiet. The only thing we value is money and not human life. This is not the way it was meant to be.