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In Drs. Steve Gutstein and Rachelle Sheely's book Under the Big Umbrella, The Underground Guide to the Pervasive Developmental Disorders, they list some actions that have proved helpful for parents and family members of a newly diagnosed person.

What to Do After the Initial Diagnosis

Don't panic and rush into things
Read selectively
Give yourself a chance to cry if you need to
Don't test your child to death
Make sure you have your emotional and respite support system in place
Stop talking to anyone who blames you
Find a Team Leader
Make a plan
Become the expert on your child
Don't feel like you have to do every type of treatment
Don't fight every battle at the same time
Development does not happen all at once and can't be forced
Develop some way of talking to well-meaning people about your child
Be hopeful about the future


These are words that all of us need to revisit from time to time (not just when our family members are first diagnosed).  Each and every time we come to a new path to choose from on our 'road of life' we need to consider this list, and make sure that the new path will accommodate these actions. Remember, be encouraged and know that you are not on your road alone.

 

 Refrigerator Mothers
A film by David E. Simpson, J.J. Hanley, and Gordon Quinn, Kartemquin Educational Films.  
Presented by the Independent Television Service.


The World Broadcast Premiere of Refrigerator Mothers will be on July 16, 2002.  From the 1950's through the 1970's, children with autism were widely thought to be victims of inadequate parenting.  Influenced by Psychologist Bruno Bettelheim, mental health and medical professionals claimed that autism was the product of mothers who were cold, distant, rejecting and unable to "bond properly".   They were labeled "refrigerator mothers". 
The film explores the stories of seven women, all but one of whom were told by psychologists or physicians that they were to blame for their child's autism.  The only exception, who is African-American, was told that her son could not be autistic because she did not fit the usual pattern: middle class, highly educated and white.  She was told, instead, that her son must be emotionally disturbed.  Yet these courageous and resilient women refused to be crushed by the burden of blame.  Today, they have strong, supportive relationships with their now adult sons and daughters and, in a variety of ways, have helped them to find their place in the world.
     The video features historic broadcast interviews with Bettelheim himself, as well as excerpts from both Hollywood features and mental health "training films" of the period.  Offering fascinating insights into the history of our understanding of mental illness and developmental disabilities, this fascinating and disturbing video raises questions that are of profound relevance today.    "Refrigerator Mothers" broadcast date: July 16, 2002 -check your local listings for the PBS station and time.

  On the Killing of Children Over Depression  & Poor Services Commentary  
by Dick Sobsey   From the SCHAFER AUTISM REPORT 
(formerly FEAT Daily Newsletter)  SUBSCRIPTIONS: SUBS@doitnow.com  
 [Below is an analysis written last year by Dick Sobsey, a professor at the University of Alberta who has published extensively on the issues surrounding abuse and disability. Sobsey wrote this at a time when several murders of people with disabilities were making the news. Thanks to Greg N. on the CAL-DD list.



      The murders of a young girl in Montreal and a man in Philadelphia [recently] compels me to write this. It came in the same week that I wrote a letter to a London Newspaper on the subject of depressed and underserved parents who kill their children with disabilities and the same week that in Vancouver, the report on the Katie Lynn Baker Homicide has focuses on how services let a family down and doesn't ask why no one has been charged with that homicide.


  There are several points that I feel are essential to make.
        1. Clinical depression is an illness that as far as we know is mostly biologically determined and in 
            many cases can be treated successfully. You do not "catch this" illness from having a disabled     
            child or from getting lousy services.
       2.  The primary service needed by parents who have this problem is not respite care or free diapers 
            or a more inclusive program for their child. They may need these things and deserve all those 
            things and more, but genuine clinical depression has a lot less to do with the circumstances people
            are in than  with internal factors. The primary service these people need is mental health care.
      3.  Reinforcing the notion that parents are driven to killing their children (and sometimes themselves) 
           by the lack of services is almost certain to do more harm than good. For people who are getting 
           close to the edge of doing violence to themselves and others, certifying their thinking as rational 
           and their behavior as justifiable increases the probability that they will go over the edge.
      4. Constructing suicide or homicide as justifiable by the circumstances also stops people in those
          circumstances, their families, and the people who provide services for them from getting the help
           they need.
      5. I am not saying that these people are necessarily bad people, most are not. I am saying that in 
          many cases they are sick and need treatment not pity that feeds their sickness.
      6. After studying hundreds of these killings, I am convinced that like people who are suicidal, displaced
          anger is often a factor in these cases. Parents who feel that they have been ignored by the system,
          their friends, their spouses, or whoever and cannot direct their anger at the real target displace that
          anger on to their children and sometimes themselves. The feeling of being hard done by may well be
          justified in many cases, but it would not justify the parent for shooting the school principal who bars a
         child from school, or the social worker who cuts their services. Neither can it provide any sense of
           justification for turning that anger against a vulnerable person.
      7.  When we as parents exploit these cases by saying it shows what crappy services can drive parents
           to do, we encourage this displaced anger. I am not recommending that we parents kill anyone but 
           I am recommending that we direct our anger into action to change the system.
      8. When we say, look what this poor parent was driven to do by the system and if things don't get better
           more of us parents may just do the same thing, we are holding our children hostages.  We are
          collectively threatening to harm them if society doesn't take a little better care of us. The biggest
          problem with this is that hostage taking always assumes that the person or people we are trying to
          influence are more about the hostage than we do.  In this case, society does not care more about our
          kids than we do. Threatening that more parents will hurt kids without better services will not improve
         services, but it may arouse enough guilt for society to tell us that they understand after parents start
          killing kids.
      9.     We need positive image for parents not negative ones. When we rationalize violence as 
          understandable considering the rough situations families face, we are not helping anyone build hope
          for the future. For every parent who faces "impossible' circumstances and goes to pieces, there are
          ten who face rougher situations with faith and hope.
    10. I love my kid. I realize that I am a lot luckier than a lot of people who have a lot on their plate but I 
          have good days and bad ones. Last week was a bad one. My back went out and I just couldn't move.
          Maybe this has something to do with carrying a 75-pound kid up seven flights of stairs to the water
          slide half or trying to lift him into the van when some jerk has parked 8 inches away and there is no
           room to lift properly.  Maybe it has to do with averaging 4 hours sleep a night for the last 10 years. 
           I don't really know. May be things will get tougher one day. May be we will lose the little supports we 
          depend on.  No matter how bad things get, I don't think that I will ever want to hurt my kid. If I ever did,
          it  would mean that there was something dreadfully wrong with me and I couldn't blame that on a 
          lack of supports. I don't think I'm unusual in this. I think it's pretty typical for parents of kids with or
           without disabilities.
      11. Murdered children with or without disabilities are typically killed by their parents. May be some
           parents are just plain monsters. Most of them are stressed, depressed, confused, and generally
          have mental health issues. A lot of them need help and some of the killings could have been
          prevented if we got help to people sooner.  If we are going to be compassionate to people who kill
         their children, lets be compassionate to all of them. If we are going to be punitive, let's be consistent
         with that, but let's stop pretending that killing children with disabilities is any different than killing any
         other child. If you want to share all or part of this with anyone else, you are more than welcomed to
         do so.
      - Dick Sobsey, ICAD Editior icadeds@pop.srv.ualberta.ca

 

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