Comments on: Autism Reshaping Grandparent Role, Survey Finds http://www.disabilityscoop.com/2010/02/19/grandparents-autism-survey/7054/ Developmental Disability News Sat, 11 Feb 2012 00:55:30 +0000 hourly 1 http://wordpress.org/?v= By: NumberOneDude http://www.disabilityscoop.com/2010/02/19/grandparents-autism-survey/7054/comment-page-1/#comment-1301 NumberOneDude Fri, 05 Mar 2010 17:57:20 +0000 http://www.disabilityscoop.com/?p=7054#comment-1301 As a Christian, I understand that there is a difference between "burdens" and "crosses." I was reminded of this difference as I read (and appreciated) David Wetherow's comments. Extra expenses, sacrifices, worry, stress are all reality factors which inherently have negative connotations. When applied to my wonderful eight-year old grandson, I consider them aspects of the cross that I bear. With love in my heart, intellectual understanding and compassion for her situation however, when applied to his mother, my daughter, they are burdens. Put simply, to spend twelve hundred dollars at one clip (which delays retirement by $1200 ++) is a cross which I bear, thankful that I have twelve hundred dollars. To have his mother not only NOT give him the extra cost supplements (because it is too difficult), and feed him junk food when I am not at home, can only be regarded as a burden. Luke's Grandmother As a Christian, I understand that there is a difference between “burdens” and “crosses.” I was reminded of this difference as I read (and appreciated) David Wetherow’s comments. Extra expenses, sacrifices, worry, stress are all reality factors which inherently have negative connotations. When applied to my wonderful eight-year old grandson, I consider them aspects of the cross that I bear. With love in my heart, intellectual understanding and compassion for her situation however, when applied to his mother, my daughter, they are burdens. Put simply, to spend twelve hundred dollars at one clip (which delays retirement by $1200 ++) is a cross which I bear, thankful that I have twelve hundred dollars. To have his mother not only NOT give him the extra cost supplements (because it is too difficult), and feed him junk food when I am not at home, can only be regarded as a burden.
Luke’s Grandmother

]]> By: bootsie http://www.disabilityscoop.com/2010/02/19/grandparents-autism-survey/7054/comment-page-1/#comment-1273 bootsie Sun, 28 Feb 2010 05:03:29 +0000 http://www.disabilityscoop.com/?p=7054#comment-1273 I find this topic very relevent as my grandparents are helping me raise my child with autism. It is a very hard decision to make as a parent but it is what is best right now for my child.Grandparents can love a child just as much as a mother can.It takes a village to raise a child with autism you cannot do it alone. thank you. I find this topic very relevent as my grandparents are helping me raise my child with autism. It is a very hard decision to make as a parent but it is what is best right now for my child.Grandparents can love a child just as much as a mother can.It takes a village to raise a child with autism you cannot do it alone. thank you.

]]> By: david.wetherow http://www.disabilityscoop.com/2010/02/19/grandparents-autism-survey/7054/comment-page-1/#comment-1272 david.wetherow Sun, 28 Feb 2010 00:40:25 +0000 http://www.disabilityscoop.com/?p=7054#comment-1272 The survey questions focus almost without exception on 'burden': care-giving / expense / sacrifice / going-without / giving-up / transportation / advocacy / worry / stress / denial / conflict / 'coping', etc. (follow the link in the article above to [collect survey responses], then [Take the Grandparents of Children with Autism Spectrum Disorder Survey] to get the picture). At its most benign, this is an example of a 'compound question', or 'loaded question' (see the Wikipedia entries on [loaded question]), which limits direct replies to be those that serve the questioner's agenda. Several years ago, I coined the term 'competitive misery' to describe the perverse incentives that families and disability advocates get drawn into as they compete for 'system' resources. The IAN survey reflects this direction, reinforcing a broad set of negative stereotypes and social roles that are attached to people with autism: burden, object of pity, object of charity, etc. Unfortunately, this negative imagery impacts the families themselves. Even if the family doesn't consciously embrace the 'burden' message, the portrayal of the child, his place in the family and community, and the roles played by the family and extended family members are always in a delicate balance. What would be the impact if instead of focusing on burden, a survey of grandparents were based on a set of questions that inquired about the role they play (or might play) in bringing other trustworthy connections into the child's life? In identifying and mobilizing the child's interests and capacities? In introducing the child into community places (workplaces, places of learning, community associations) in which the grandparent already has 'standing'? In following the threads of the child's interest in the direction of companionship, connection and contribution? One of the gifts of grandparents - in addition to wisdom and unconditional love - is that their relationship networks and connections to the larger community are likely to be extensive, mature, and still intact. A strategic and thoughtful inquiry could help to identify, strengthen and mobilize that gift. David Wetherow CommunityWorks Parksville, BC http://www.communityworks.info The survey questions focus almost without exception on ‘burden’: care-giving / expense / sacrifice / going-without / giving-up / transportation / advocacy / worry / stress / denial / conflict / ‘coping’, etc. (follow the link in the article above to [collect survey responses], then [Take the Grandparents of Children with Autism Spectrum Disorder Survey] to get the picture).

At its most benign, this is an example of a ‘compound question’, or ‘loaded question’ (see the Wikipedia entries on [loaded question]), which limits direct replies to be those that serve the questioner’s agenda.

Several years ago, I coined the term ‘competitive misery’ to describe the perverse incentives that families and disability advocates get drawn into as they compete for ‘system’ resources. The IAN survey reflects this direction, reinforcing a broad set of negative stereotypes and social roles that are attached to people with autism: burden, object of pity, object of charity, etc.

Unfortunately, this negative imagery impacts the families themselves. Even if the family doesn’t consciously embrace the ‘burden’ message, the portrayal of the child, his place in the family and community, and the roles played by the family and extended family members are always in a delicate balance.

What would be the impact if instead of focusing on burden, a survey of grandparents were based on a set of questions that inquired about the role they play (or might play) in bringing other trustworthy connections into the child’s life?

In identifying and mobilizing the child’s interests and capacities?

In introducing the child into community places (workplaces, places of learning, community associations) in which the grandparent already has ‘standing’?

In following the threads of the child’s interest in the direction of companionship, connection and contribution?

One of the gifts of grandparents – in addition to wisdom and unconditional love – is that their relationship networks and connections to the larger community are likely to be extensive, mature, and still intact. A strategic and thoughtful inquiry could help to identify, strengthen and mobilize that gift.

David Wetherow
CommunityWorks
Parksville, BC
http://www.communityworks.info

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