GRANDPARENTS MATTER TOO

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GRANDPARENTS MATTER TOO

• Barb Juett and Julie Abgrall-Cowan

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• Grandparents appear to be regarded by many in
  the helping professions as outside family
  members, but they are not outside the confusion,
  sadness, anger, challenge and joy brought about
  by the birth and growth of a grandchild who has a
  disability. (Marsh, 1992 Seligman, 1991)

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Presentation Outline

• Review of the literature
• Rationale for offering the workshop
• Goals and format of the workshop
• Tips and strategies for grandparents
• Recommendations for future workshops

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Literature Review

• Despite closer geographic distance being a
  predictor of greater overall involvement, it did
  not automatically determine the quality of
  support being provided.
• Differences in perceived support from the
  mothers parents as opposed to the fathers
  parents. Support was also determined as being
  both instrumental (practical) and emotional.

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Literature Review

• Grandparent support was associated with families
  where there was an ongoing historical pattern of
  close and supportive relationships even before
  the child with the disability was born.
• Trute (2003) indicates that it is the emotional
  support from the fathers mother that is the most
  crucial for the adjustment of the father, and the
  emotional support that is available from the
  mothers mother that is the most crucial for the
  mother.

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Literature Review

• Ethnic and cultural issues perceptions of
  disability and expectations of support need to be
  contextualized within different ethnic belief
  systems and cultural practices
• It is consistent in the research (Findler
  Ben-Ari 2003 Mitchell 2007 Trute 2003) that
  grandparents of disabled children have additional
  disability specific needs such as information
  about the childs condition and support services
  available.

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So why did we offer Grandparent workshops?

• Grandparents are significant components of
  families of children with disabilities, whether
  they are providing direct or indirect support.
• The idea of Grandparent Workshops is not new.
• Grandparents are not always aware of how they can
  be of assistance.

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So why did we offer Grandparent workshops?

• Grandparents worry about their grandchild but
  they also have the added concerns for their own
  child.
• Many grandparents express that they do not always
  have an accurate understanding of their
  grandchilds diagnosis. Once the grandparent
  understands the nuts and bolts of their
  grandchilds disability, they see the childs
  potential instead of the childs limitations.
  (Meyer, 1986)

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Identified Needs from Grandparents

• Practical, hands on help how could they be
  involved with the grandchilds therapy goals?
  (i.e. speech, physical therapy) How much help is
  appropriate?
• How to be aware of the signs of stress on the
  childs parents.
• What can they expect for the future?

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Identified Needs from Grandparents

• Worry about how to spend enough time with the
  grandchildren without disabilities permission
  to have balance.
• How do they link to the resources in the
  community?
• To gain a better understanding of their
  grandchilds diagnosis, i.e. autism.
• To gain information on treatment

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GOALS OF WORKSHOP

• To meet other grandparents of children with
  special needs and discuss their common concerns.
• To learn about programs and services for children
  with special needs and their families.
• To discuss helpful strategies that enable
  grandparents to be supportive to their children
  and their families.

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Format of Workshop

• Introductions of facilitators
• Housekeeping guidelines
• Introduction of participants and reason for
  attending.
• Goals and overview of workshop
• Presentation Impact of diagnosis

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Format of Workshop

• Dyadic activity on pre and post diagnosis
• Debrief activity in round table discussion
• Lunch tour of OCTC
• Information about community resources
• Review of topics raised during introductions
• Strategies for grandparents
• Evaluations

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Pre Diagnosis

•  Positive
• Healthy Baby
• Happy Child
• Anticipation of a Healthy Child
• Listening
• Encouragement
• Grandparents and siblings pulling together even
  though they dont know whats wrong

• Negative
• Disbelief
• Not correct
• Blaming
• Shock
• Fears for the Future
• Peer Acceptance
• Impact on grandparents leisure time
• Anxiety
• Worry for the parents.

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Post Diagnosis

• Positive
• Small development and improvements.
• Now that we know the cause we are more
  understanding.
• Knowing has helped realize that other things are
  more important.

• Negative
• Stress on Parents/Marriage
• Stress on grandparents
• Loss of a grandchild to sit on my lap and spend
  time laughing and talking.
• Financial hardship
• Mourning
• Feeling of loss

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Post Diagnosis

• Positive
• Connections made. 
• Many small steps.
• Decision to treat him as normally as possible no
  poor little child
• Acceptance
• Must look on positive side

• Negative
• Blame Self
• Anger
• Blaming Others
• Blaming Parents
• Not believing in diagnosis
• Shock
• Denial

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TIPS FOR GRANDPARENTS

• Permit yourself time to go through the same
  grieving process as your child. Grandparents
  often grieve twice once for their child and once
  for their grandchild.
• Seek current and accurate information about the
  diagnosis. Reliable information eases some of
  the fears about the childs condition.
• Be a good listener for the childs parents.
  Remember not to minimize your childs concerns.

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TIPS FOR GRANDPARENTS

• Reassure the parents that you are available
  should they need you, then back off and allow
  them some time.
• Show equal concern for each of your grandchildren
  if you have more than one. Playing favourites
  hurts everyone.
• Communicate your feelings without trying to take
  over. If you are uncomfortable with your
  grandchild but want to help, ask the parents to
  think of other ways you can support the family

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TIPS FOR GRANDPARENTS

• Be honest if you are uncomfortable interacting
  with the child. Your grandchild may be stressful
  to supervise. Admit when emotions are frazzled.
• If possible, be a part of your grandchilds
  development. If you live nearby, offer to
  accompany the child to therapy and learn
  techniques that are a part of your grandchilds
  treatment.
• Remain involved as your grandchild matures.
  Discover that he/she has a unique personality
  beyond the diagnosis.

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TIPS FOR GRANDPARENTS

• Celebrate your grandchilds accomplishments and
  appreciate the changes, big or small.
• Remain involved as your grandchild matures.
  Discover that he/she has a unique personality
  beyond the diagnosis.
• (Unruh, 1995)

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CONCLUSION

• Grandparents came to the group for more
  instrumental reasons (how do I find resources,
  learn more about diagnosis) but came away with a
  better understanding of how their adjustment
  (grief and loss) impacts on their child and
  grandchild.

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CONCLUSION

• Grandparents should be regarded as a potential
  major support to parents at the crucial time of
  assessment and intervention. (Margetts, Couteur
  and Croom, 2006)
• Including grandparents from diverse backgrounds
  needs to be explored.

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CONCLUSION

• There is a desire on the part of the grandparents
  to have future workshops that address more
  specific treatment strategies and funding for the
  future needs of their grandchild. They also
  indicated a desire to meet grandparents of older
  children to have broader experience to draw upon.