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Heather Miller KuhaneckSarah Yeaton
Deb Widman
Sarah Yeaton- Occupational Therapist at aprivate school in MA, Learning Prep School
Debra Widman Occupational Therapist inprivate practice, OT2Go
Heather Miller Kuhaneck- Clinical AssistantProfessor at Sacred Heart University in
Fairfield Our contact info is at the end
Describe the challenges faced by families and siblingsof children with an ASD.
Explore mechanisms of coping and resiliency thatallow families and siblings of children with an ASD tothrive.
Identify opportunities for evidence-based and familycentered occupational therapy intervention withfamilies with a child with an ASD.
Consider ways to implement local occupationaltherapy programs for families and siblings of childrenwith an ASD.
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people.uwec.edu
Frequent financialissuesLoss ofemploymentPaying forservices
Montes & Halterman, 2008
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I know I am not an expert at managing the
complex balancing act within our family. Ihope I am doing a decent job, but sometimesIm not so sure. Unfortunately, parents ofchildren with autism arent given any specialgraces to deal with these circumstances. Weare just ordinary people in very extraordinarysituations.-Parent of a child with ASD
Harris, & Glasberg, 2003 p. 123
Loneliness Isolated by peers Difficulty coping Behavior problems Depression Delays in social acquisition View of sibling with ASD as
burdensome Concern about the future Effect on parental relationship
Bagenholm & Gillberg, 1991; Goeke & Ritchey, 2011; Knott,1995; Opperman & Alant,
2003; Orsmond, 2009; Turnbull, 2006
We have gone through some hard timessince my daughter entered junior high school.She seems to be embarrassed by me, herfather and her brother Jack. She doesnt wantto be seen with Jack, whose behavior can bequite disruptive. My husband and I arethinking of some counseling for her.-Parent of a child with ASD
Harris & Glasberg,2003 p. 76
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Hes always awake at night. Sometimes he
comes into my room and wants to play; hejumps on my bed. I wake up and try to screamat him quietly so he doesnt wake up Mommy.And then I take him back to bed and tuck himin and tell him to shut up and not wake upagain. Sometimes I feel bad when I yell athim. -Nine year old girl with an older brother with autism
Strohm, K., 2005 p. 84
Importance of Sibling Relationships First socialization experience:
Sharing
Companionship
Rivalry
Development of a childs social world: Play
Help
Emotional support
Later care of the sibling as parents age and needhelp
; Furman & Buhrmester, 1985; Turnbull, 2006; Whiteman, Bernard, & Jensen, 2011
How do families manage?
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Bouncing Backfrom Adversity
They have social support balance the condition with family needs maintain family boundaries communicate well attribute positive meaning to situations are flexibility are committed t to family
use active coping strategies have collaborative relationships with professionals
(Patterson & Blum, 1994)
Have: Increased level of engagement with activities Independence Empathy Task orientation Problem solving skills Positive peer relationships
Werner (1989)
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Mothers of children with ASD cope using
Me time Planning
Sharing the load
Knowledge helps you to relieve stress . . .. because it givesyou knowledge to deal with the situations that come up.
Lifting the restraints of labels
Recognize joys
See Miller- Kuhaneck et al, 2010 and also http://www.hs-zigr.de/~wirsing/ASH%20Sozialmedizin09/AAErfasst/Qual%20Health%20Res-2010-Marshall-105-16.pdf
The way in which professionals interact withfamilies can either help or hinder coping andresiliency.
Family Centered Care is an important way topromote resilient families.
prostatecancer.ca-photohttp://www.neserve.org/maconsortium/pdf/Medical%20Home/Family_Centered_Care.pdf
Family-Centered Care assures thehealth and well-being of children andtheir families through a respectfulfamily-professional partnership. Ithonors the strengths, cultures,traditions and expertise that everyonebrings to this relationship. Family-Centered Care is the standard ofpractice which results in high qualityservices.
http://www.hs-zigr.de/~wirsing/ASH%20Sozialmedizin09/AAErfasst/Qual%20Health%20Res-2010-Marshall-105-16.pdfhttp://www.hs-zigr.de/~wirsing/ASH%20Sozialmedizin09/AAErfasst/Qual%20Health%20Res-2010-Marshall-105-16.pdfhttp://www.hs-zigr.de/~wirsing/ASH%20Sozialmedizin09/AAErfasst/Qual%20Health%20Res-2010-Marshall-105-16.pdfhttp://www.hs-zigr.de/~wirsing/ASH%20Sozialmedizin09/AAErfasst/Qual%20Health%20Res-2010-Marshall-105-16.pdfhttp://www.hs-zigr.de/~wirsing/ASH%20Sozialmedizin09/AAErfasst/Qual%20Health%20Res-2010-Marshall-105-16.pdfhttp://www.hs-zigr.de/~wirsing/ASH%20Sozialmedizin09/AAErfasst/Qual%20Health%20Res-2010-Marshall-105-16.pdfhttp://www.hs-zigr.de/~wirsing/ASH%20Sozialmedizin09/AAErfasst/Qual%20Health%20Res-2010-Marshall-105-16.pdfhttp://www.hs-zigr.de/~wirsing/ASH%20Sozialmedizin09/AAErfasst/Qual%20Health%20Res-2010-Marshall-105-16.pdfhttp://www.hs-zigr.de/~wirsing/ASH%20Sozialmedizin09/AAErfasst/Qual%20Health%20Res-2010-Marshall-105-16.pdfhttp://www.hs-zigr.de/~wirsing/ASH%20Sozialmedizin09/AAErfasst/Qual%20Health%20Res-2010-Marshall-105-16.pdfhttp://www.hs-zigr.de/~wirsing/ASH%20Sozialmedizin09/AAErfasst/Qual%20Health%20Res-2010-Marshall-105-16.pdfhttp://www.hs-zigr.de/~wirsing/ASH%20Sozialmedizin09/AAErfasst/Qual%20Health%20Res-2010-Marshall-105-16.pdfhttp://www.hs-zigr.de/~wirsing/ASH%20Sozialmedizin09/AAErfasst/Qual%20Health%20Res-2010-Marshall-105-16.pdfhttp://www.hs-zigr.de/~wirsing/ASH%20Sozialmedizin09/AAErfasst/Qual%20Health%20Res-2010-Marshall-105-16.pdf8/7/2019 a706_1
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Image safetybootsandcrochet.wordpress.com
Respect and
dignity
Sharing
Participation
Collaboration
Imagehttp://learn-wealth-creation.com/blog/
And also
image fineartamerica.com
Seehttp://www.neserve.org/maconsortium/pdf/Medical%20Home/Family_Centered_Care.pdf
http://learn-wealth-creation.com/blog/http://learn-wealth-creation.com/blog/http://www.neserve.org/maconsortium/pdf/Medical%20Home/Family_Centered_Care.pdfhttp://www.neserve.org/maconsortium/pdf/Medical%20Home/Family_Centered_Care.pdfhttp://learn-wealth-creation.com/blog/http://learn-wealth-creation.com/blog/http://learn-wealth-creation.com/blog/http://learn-wealth-creation.com/blog/http://learn-wealth-creation.com/blog/8/7/2019 a706_1
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Curiosity Friendly approachable and non judgmental
tone Active listening Gathering AND giving
(Dunst, et al, 2000; Dunst, Hamby, Brookfield 2007; Woods &Lindeman, 2008)
Image depts.washington.edu
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How many of you have seen OT reports (and
those from other professionals) that highlightand list all of the deficit areas
How can we tailor the way in which we do ourjob to be more family centered?
Can we confer with parents about theinformation they wish us to provide? Parentsreport they want a strength based approach(Klein, et al 2010)
OTs can help parents to take advantage ofnaturally occurring learning opportunities-use activity / task analysis and teach parentsto do the same
Dunst, et al, 2000
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In addition to perhaps altering our
communication, assessment methods, andspecific intervention approaches.we canalso help parents cope by expanding ourareas of intervention and developingprograms that address family needs
Providing resources Obtaining other services Discussion of spirituality, making meaning Obtaining respite care Creating family routines and habits Finding local family fun and community outings Assisting the family to participate in extended
family events and family celebrations Sibling play / siblings as part of intervention
Ferraiolo, Hansford, & Harris, 2010; Miller Kuhaneck,et al , 2010
Lets brainstorm out loud Think back to all of the stressors and issues
we mentioned in the families of children withASD..
What are some program ideas we could thinkof that might help families
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Sibling support groups
Sibling summer camps Sibling after school / before school care Sibling play assistance in the home Lunch bunch with SW or SLP with siblings Physical activities for families - soccer for ex. Friday night social activities for teens with ASD Parent coaching nights how to talk to sibs about
autism and deal with discipline
Funding Liability Location- space Based on service delivery location
School Setting
Public vs. Private
Agency based
Clinic & Hospital Setting
Grants (corporations / foundations) Collaborating with not for profit Small budget Fee for Service Fundraising, galas, private donations VOLUNTEERS Collaboration with other disciplines- SLP, SW Passion- choose something you REALLY want to
make happen!!!!
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(AOTA, 2010; Cohen, 1999; Gabovitch & Curtin, 2009; King et al, 2004)
Image getentrepreneurial.com
SoWHYdo it?
(Cohen, 1999; Dunst, Hamby, & Brookfield, 2007; Dunst, Trivette, & Hamby, 2007;Gabovitch & Curtin, 2009 ; King, et al 2004; King et al, 1999)
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Self reflection and program evaluation A self assessment for providers
http://www.familyvoices.org/pub/projects/fcca_ProviderTool.pdf The Family Centered Program Rating Scale (Murphy, et al, 1995)
Examining the perceptions of the families you work with The Measure of Processes of Care (King, Rosenbaum, &
King, 1996)http://www.canchild.ca/en/measures/mpoc56_mpoc20.asp
The Family-Centered Behavior Scale consists of 26 itemsdescribing family-centered behaviors that might beperformed by professional or paraprofessional staffmembers. Seehttp://tarc.aecf.org/initiatives/mc/mcid/resources_instrument.php?inst_id=199527
http://www.autism.ca/siblings.pdf http://www.autismspeaks.org/community/fa
mily_services/siblings.php http://www.childrensdisabilities.info/autism/i
nterview-harris.htm http://www.time.com/time/health/article/0,8
599,1698128,00.html
Parent/Family books At Home in the Land of Oz: Autism, My Sister, and Me by Anne
Clinard Barnhill
Voices from the Spectrum: Parents, Grandparents, Siblings, PeopleWith Autism, And Professionals Share Their Wisdom by Cindy N.
Ariel and Robert A. Naseef
Siblings of Children With Autism: A Guide for Families by Sandra L.Harris
Being the Other One: Growing Up with a Brother or Sister Who Has
Special Needs by Kate Strohm
Childrens books Rules by Cynthia Lord Siblings: The Autism Spectrum Through Our Eyes by Jane Johnson
and Anne Van Rensselaer
http://www.familyvoices.org/pub/projects/fcca_ProviderTool.pdfhttp://www.familyvoices.org/pub/projects/fcca_ProviderTool.pdfhttp://www.canchild.ca/en/measures/mpoc56_mpoc20.asphttp://www.canchild.ca/en/measures/mpoc56_mpoc20.asphttp://www.canchild.ca/en/measures/mpoc56_mpoc20.asphttp://tarc.aecf.org/initiatives/mc/mcid/resources_instrument.php?inst_id=199527http://tarc.aecf.org/initiatives/mc/mcid/resources_instrument.php?inst_id=199527http://tarc.aecf.org/initiatives/mc/mcid/resources_instrument.php?inst_id=199527http://tarc.aecf.org/initiatives/mc/mcid/resources_instrument.php?inst_id=199527http://tarc.aecf.org/initiatives/mc/mcid/resources_instrument.php?inst_id=199527http://tarc.aecf.org/initiatives/mc/mcid/resources_instrument.php?inst_id=199527http://www.autism.ca/siblings.pdfhttp://www.autismspeaks.org/community/family_services/siblings.phphttp://www.autismspeaks.org/community/family_services/siblings.phphttp://www.childrensdisabilities.info/autism/interview-harris.htmhttp://www.childrensdisabilities.info/autism/interview-harris.htmhttp://www.time.com/time/health/article/0,8599,1698128,00.htmlhttp://www.time.com/time/health/article/0,8599,1698128,00.htmlhttp://www.time.com/time/health/article/0,8599,1698128,00.htmlhttp://www.time.com/time/health/article/0,8599,1698128,00.htmlhttp://www.childrensdisabilities.info/autism/interview-harris.htmhttp://www.childrensdisabilities.info/autism/interview-harris.htmhttp://www.childrensdisabilities.info/autism/interview-harris.htmhttp://www.childrensdisabilities.info/autism/interview-harris.htmhttp://www.autismspeaks.org/community/family_services/siblings.phphttp://www.autismspeaks.org/community/family_services/siblings.phphttp://www.autism.ca/siblings.pdfhttp://tarc.aecf.org/initiatives/mc/mcid/resources_instrument.php?inst_id=199527http://tarc.aecf.org/initiatives/mc/mcid/resources_instrument.php?inst_id=199527http://tarc.aecf.org/initiatives/mc/mcid/resources_instrument.php?inst_id=199527http://www.canchild.ca/en/measures/mpoc56_mpoc20.asphttp://www.canchild.ca/en/measures/mpoc56_mpoc20.asphttp://www.familyvoices.org/pub/projects/fcca_ProviderTool.pdf8/7/2019 a706_1
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Web and Blogs Autism Siblings:www.autismsiblings.org Sibling Support Project: www.siblingsupport.org http://www.child-autism-parent-cafe.com/siblings-of-
children-with-autism.html
Support Groups
www.siblingsupport.org(Click: Sibshops)
Sarah [email protected]
Debra Widman
Heather Miller [email protected]
Email for list of references- put references inthe subject line
http://www.autismsiblings.org/http://www.autismsiblings.org/http://www.siblingsupport.org/http://www.child-autism-parent-cafe.com/siblings-of-children-with-autism.htmlhttp://www.child-autism-parent-cafe.com/siblings-of-children-with-autism.htmlhttp://www.siblingsupport.org/mailto:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]://www.siblingsupport.org/http://www.child-autism-parent-cafe.com/siblings-of-children-with-autism.htmlhttp://www.child-autism-parent-cafe.com/siblings-of-children-with-autism.htmlhttp://www.child-autism-parent-cafe.com/siblings-of-children-with-autism.htmlhttp://www.child-autism-parent-cafe.com/siblings-of-children-with-autism.htmlhttp://www.child-autism-parent-cafe.com/siblings-of-children-with-autism.htmlhttp://www.child-autism-parent-cafe.com/siblings-of-children-with-autism.htmlhttp://www.child-autism-parent-cafe.com/siblings-of-children-with-autism.htmlhttp://www.child-autism-parent-cafe.com/siblings-of-children-with-autism.htmlhttp://www.child-autism-parent-cafe.com/siblings-of-children-with-autism.htmlhttp://www.child-autism-parent-cafe.com/siblings-of-children-with-autism.htmlhttp://www.child-autism-parent-cafe.com/siblings-of-children-with-autism.htmlhttp://www.child-autism-parent-cafe.com/siblings-of-children-with-autism.htmlhttp://www.child-autism-parent-cafe.com/siblings-of-children-with-autism.htmlhttp://www.child-autism-parent-cafe.com/siblings-of-children-with-autism.htmlhttp://www.child-autism-parent-cafe.com/siblings-of-children-with-autism.htmlhttp://www.siblingsupport.org/http://www.autismsiblings.org/