3/28/2011

Heather Miller Kuhaneck

Sarah Yeaton
Deb Widman

 Sarah Yeaton- Occupational Therapist at a

private school in MA, Learning Prep School
 Debra Widman –Occupational Therapist in
private practice, OT2Go
 Heather Miller Kuhaneck- Clinical Assistant
Professor at Sacred Heart University in
Fairfield
 Our contact info is at the end

 Describe the challenges faced by families and siblings

of children with an ASD.
 Explore mechanisms of coping and resiliency that
allow families and siblings of children with an ASD to
thrive.
 Identify opportunities for evidence-based and family
centered occupational therapy intervention with
families with a child with an ASD.
 Consider ways to implement local occupational
therapy programs for families and siblings of children
with an ASD.

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people.uwec.edu

Frequent financial
issues
•Loss of
employment
•Paying for
services

Montes & Halterman, 2008

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 “I know I am not an expert at managing the

complex balancing act within our family. I
hope I am doing a decent job, but sometimes
I’m not so sure. Unfortunately, parents of
children with autism aren’t given any special
graces to deal with these circumstances. We
are just ordinary people in very extraordinary
situations.”-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 times

since my daughter entered junior high school.
She seems to be embarrassed by me, her
father and her brother Jack. She doesn’t want
to be seen with Jack, whose behavior can be
quite disruptive. My husband and I are
thinking of some counseling for her.”
-Parent of a child with ASD

Harris & Glasberg,2003 p. 76

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 “He’s always awake at night. Sometimes he

comes into my room and wants to play; he
jumps on my bed. I wake up and try to scream
at him quietly so he doesn’t wake up Mommy.
And then I take him back to bed and tuck him
in and tell him to shut up and not wake up
again. Sometimes I feel bad when I yell at
him.” -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 child’s social world:
 Play
 Help
 Emotional support
 Later care of the sibling as parents age and need
help
; Furman & Buhrmester, 1985; Turnbull, 2006; Whiteman, Bernard, & Jensen, 2011

 How do families manage?

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Bouncing Back
from 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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 Mother’s of children with ASD cope using

 “Me time”
 Planning
 Sharing the load
 Knowledge “helps you to relieve stress . . .. because it gives
you 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 with

families can either help or hinder coping and
resiliency.
 Family Centered Care is an important way to
promote resilient families.

Family-Centered Care assures the

“

health and well-being of children and

their families through a respectful
family-professional partnership. It
honors the strengths, cultures,
traditions and expertise that everyone
brings to this relationship. Family-
Centered Care is the standard of
practice which results in high quality
services.”
prostatecancer.ca- photo
http://www.neserve.org/maconsortium/pdf/Medical%20Home/Family_Centered_Care.pdf

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•Respect and
dignity
•Sharing
•Participation
•Collaboration

Image safetybootsandcrochet.wordpress.com

And also……

Image http://learn-wealth-creation.com/blog/

image fineartamerica.com
See
http://www.neserve.org/maconsortium/pdf/Medical%20Home/Family_Centered_Care.pdf

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“ When the subject is a particular child, as

opposed to autism in general, its not you, but
those who spend the most time working
directly with the child, his parents and aides,
who are the experts. Assume, unless you see
evidence to the contrary, that they are doing
the right thing. Notice the good things that
parents are doing, and validate them.”
Beales, 2003 p. 38

(Beatson, 2008; Bruder, 2010; Dunst, 2002; 2007; Gabovitch & Curtin, 2009; Lawlor
& mattingly, 1998; Murray & Mandell, 2006)

 There has been a call for more FCC in elementary

education as well, that has largely gone unheard
(Dunst, 2002)
 Parents of elementary age children with disabilities
want FCC (McWilliam, Maxwell, & Sloper, 1999)
 How?
 Provision in IDEA 2004 for parent training and
counseling as a related service!!!!!
 See
http://www.wrightslaw.com/advoc/articles/support.ba
rdet.htm for example

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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 highlight
and list all of the deficit areas
 How can we tailor the way in which we do our
job to be more family centered?
 Can we confer with parents about the
information they wish us to provide? Parents
report they want a strength based approach
(Klein, et al 2010)

 OTs can help parents to take advantage of

naturally occurring learning opportunities-
use activity / task analysis and teach parents
to do the same

 Dunst, et al, 2000

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 In addition to perhaps altering our

communication, assessment methods, and
specific intervention approaches….we can
also help parents cope by expanding our
areas of intervention and developing
programs 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 with
ASD…..
 What are some program ideas we could think
of 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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So
WHY
do it?

(AOTA, 2010; Cohen, 1999; Gabovitch & Curtin, 2009; King et al, 2004)
Image getentrepreneurial.com

(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.as
p
 The Family-Centered Behavior Scale consists of 26 items
describing family-centered behaviors that might be
performed by professional or paraprofessional staff
members. See
http://tarc.aecf.org/initiatives/mc/mcid/resources_instrum
ent.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, People
With 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
 Children’s books
 Rules by Cynthia Lord
 Siblings: The Autism Spectrum Through Our Eyes by Jane Johnson
and Anne Van Rensselaer

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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 Yeaton
sarah.yeaton@gmail.com
 Debra Widman
deb@ot2go.com
 Heather Miller Kuhaneck
kuhaneckh@sacredheart.edu

 Email for list of references- put “references” in

the subject line

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