Kol ami presentation 9.12.10.2
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Transcript of Kol ami presentation 9.12.10.2
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Lydia Abrams, LCSWTIKVAH Special Needs Program Coordinator
Tampa Jewish Family Serviceswww.tjfs.org
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Learning Objectives:To increase understanding of the emotional
impacts of raising children with special needs.For parents/caregivers to learn that they are “not
alone” and that their feelings are normal.To learn new resources and ways to assist
families.
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This presentation does not reflect the experiences of all parents/primary caregivers of children with special needs.
Each family unit and every family member experiences the impacts of raising a child with special needs in their own unique way.
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Every Child is an IndividualEach Parents’ Experience is UniqueSome Families May Have Similarities but None are the Same
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“Children First”“Child with a Special Need or Disability”Some families prefer the word “Disability”;
some prefer the words “Special Needs”; some prefer the individual’s diagnosis; some just prefer the child’s name
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“Special Needs”• ADHD• Autism Spectrum• Behavioral Concerns• Blind/Visually
Impaired• Cerebral Palsy• Deaf/Hearing
Impaired• Developmental Delays• Different Physical
Abilities
• Down Syndrome• Genetic Conditions• Health or Medical Issues• Learning Delays• Mental Health Issues• Premature Birth• Sensory Processing Issues• Speech or Feeding Issues
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“Welcome To Holland” by Emily Perl Kingsley page 216
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Family Plans Prior to Birth:An addition to the existing familyExpectation of a happy, healthy baby and typical birthFuture plans for parenting, childcare, education,
careerParental instincts to protect and bond with babyUnplanned PregnancyLimited support/resources
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Feelings of Grief/Loss:Denial and/or ShockAngerBargaining Depression/SadnessAcceptance/Coping
May experience process in different ordersSome stages take shorter or longer than othersSome never make it to acceptance
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What are parents/caregivers grieving for?
The “typical” child they were anticipatingThe “typical” sibling experience for other childPlans and hopes for the futureThe child that existed before the diagnosisThe life they had prior to the child/diagnosisFeeling they were “robbed” of a typical parenting experience
“The day my child was born was the day I lost my innocence.” You Will Dream New Dreams
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Feelings of Anger:At themselves
Toward their child/renToward the medical system
Toward their treatment teamToward their religious belief system
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Feelings of Guilt:Unable to protect child/child’s suffering
Less attention toward other childrenLess focus on personal needs
Less of a connection with partner“What did I do to cause this?”
“How could I have prevented this?”
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Feelings of Isolation:Some family members and friends not
as involved or supportiveOther people uncomfortable around childNot wanting to explain conditions and answer questions“No one else understands”Financially unable to do activitiesDifficulty meeting child’s special needs
outside the homeFeelings associated with Depression
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Decreased confidence in parenting skills:Society does not appear to value children with
special needs equally to “typical” childrenEffective parenting skills that work for
“typical” children do not always work for children with special needs
Families of children with special needs are seen by many professionals who assign various labels
Feelings of vulnerability when working with professionals
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Fear and Worry:Child’s ProgressChild’s FutureEducational NeedsSocial SkillsAbility to live independently when olderSafety or possible deathOwn Mental HealthStable relationship with partnerNext “crisis”
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Feeling Overwhelmed:May not have prior medical or advocacy experienceLearning details about child’s special needs and related
treatmentManaging appointments for various specialistsDealing with insurance coverage and financial
concernsManaging time to meet all of the family member’s
needsUncertainty for the futureEnsuring accommodations for childAs children get older – new, unexpected challenges emergeMay be late or miss scheduled appointments
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Feelings of Detachment:“Easier than facing challenges”Over-involvement with work or other activitiesLimited involvement in child’s treatment or careFocus on things that can be controlledHigh focus on child – detach from other areasDespair: “There is nothing I can do to make it
better”Denial: “There is nothing wrong”Symptoms of PTSDLack of self care/sleep, deteriorating health
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“Roller Coaster Ride”Emotional High’s and Low’s
“Just when I think things are improving - something else goes wrong”
Constant state of crisis
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Feelings of Relief:To have a diagnosis
To learn what treatment is indicatedTo be educated on services that are available
to assist childTo let go of feelings of fault or control
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Role Changes:Parents/Primary Caregivers can unexpectantly
become…NurseResearcherAdvocateCase ManagerTherapistNutritionistEducatorPlaymate…For their childCan forget they are the parent of their child first
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“Survival” page 22
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Most families of children with special needs are on a journey
They will experience various emotionsThey can learn how to cope with the unexpected
changes in their lives
Gaining Acceptance/Coping Skills:
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Build a Strong Support System:
Families of children with special needs (including those with different types of special needs)
Locate or start a support groupSurround self with nurturing people that are
accepting of child and parenting choicesUtilize a treatment team that is supportive
and empoweringRe-establish relationship with partnerDiscussion boards on the internet
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Find Balance:ExerciseEnjoyable social activitiesWork outside of home (volunteer or part-time
work)Meditate/Relaxation exercisesUtilize babysitter/Respite ProgramsFun activities as a family“Alone time” with partner/selfRead leisure books/magazines, books by other parents of children with special needsFind 15 minutes per day
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Acknowledge Positive Aspects of Child and Life:Recognize child as a fighterSee gains child has madeRealize own wisdom and strengthInvolvement in other children’s livesIdentify what the child has instead of what she/he
does not haveChild is his/her own individual with different life
goalsLearn ways to accept child for the person he/she is
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Patience:With oneself as information is sought and
when changes occurWith child as she/he learns new therapies
and copes with changesWith medical/therapy teams as treatment
options are identified and carried outWith family members as they cope with
changesBe kind and gentle with oneself
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Practice Forgiveness:Of oneselfOf partnerOf child/renOf doctors and/or other professionalsOf Higher Power
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Letting Go:AngerControlResentmentWanting things to changeThinking of how “things should have been”Wishing the child was different
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Writing as a tool for healing:Journal Writing (Let it all out – no one else
will see it)BloggingScrapbookingPhoto-journaling (see progress)Write letters (to self, child, partner, professionals, higher power)Can choose whether or not to send letters
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More coping skills:Change focus on things that can be controlled –
instead of things that can’t be controlledFocus on the present rather than the futurePractice Assertiveness skillsNurture oneself, meet own needs, regain “sense of self”Utilize religious/spiritual belief systemFeelings of crisis may have passed
Life is about change – all parents are faced with different types of challenges related to their
children
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Some may never accept the situation - but may learn to cope
“It is the journey that counts – not the destination”
-You Will Dream New Dreams
Feelings of Acceptance May Come and Go
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If parent’s emotional needs are met –
then they can better care for their children
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Many parents/caregivers benefit from professionals that practice:EmpathyCompassionUnderstandingPatience HopeListeningInclusion
Parents/Caregivers and professionals are a team that are working toward the best interest of the child
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Empathy:The capability to share and understand
another’s emotions and feelingsThe ability to “put oneself in another’s shoes”A person does not need to have had the same
experiences as the other person in order to practice empathy
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Empathy Exercise:Find a partnerBoth partners share an experience that you
have had with a parent/caregiver in which you practiced empathy to assist in meeting their emotional needs
Both partners list some helpful things that could be said to the parent/caregiver
Share with the group
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“Form a Partnership” page 51
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Helpful things for professionals to say:Just listen“You are not alone.”“How are you doing/feeling?”“What do you want from treatment?”“What does your instinct tell you?”“What type of support system do you have?”“How are you taking care of yourself?”“You are capable of making the right decisions for
your family.”“How is the treatment working for you and your
family?”“What are your child’s strengths?”“Other families have found (this) helpful.”
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Tips for Professionals:Ask Parents/Guardians how they are doingAllow them to “tell their story”Validate their feelingsExpress hope for the future (when appropriate)Praise them for their strengthsEncourage them to utilize a supportive
treatment teamEmpower them to advocate for their child and
make decisions for their childHelp them to feel that their opinions about child
and treatment matter
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More tips:See the “whole child”; See them as an individualAvoid labels when possibleConnect them with community resourcesEducate that there are options (treatments,
professionals, assistive devices, etc.)Acknowledge the steps the child has madeConnect clients with similar issuesBe flexible with homework (they have a lot to juggle)Encourage parents to find solutions that work for
themTake time from therapy to talk – it can make a world
of difference in future sessions
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Core Services that can assist families:Individual CounselingFamily CounselingInformation on Community ResourcesRespite Programs; Buddy ProgramsResource FairsPlay Therapy for child and siblingsParent support groupsSibling Support GroupsParent WorkshopsCommunity Outreach/Networking
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Who Are The People In Your Neighborhood?Physical, Occupational, Speech TherapistsPediatricians/Developmental PediatriciansAgencies serving families and individuals with Special Needs Psychologists, Psychiatrists, Social Workers, Therapists,
Case ManagersBehavior SpecialistsAlternative Medical ProvidersEarly Intervention and School Based-ProgramsChildren’s Board; Early Childhood CouncilPublic, Charter, Private School SystemsHospitals (In- and Out-patient)
Networking is vital to learning about resources in your community
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“What if the shoe doesn’t fit?”There is more than one way to conduct
treatment on the same child.Each specialist is an individual with different
approaches and every family of children with special needs is unique. Therefore, not all forms of treatment will work for every family.
Flexibility and understanding is key.It is okay to refer out/seek another professional who may be a better “fit”.
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When should parents/caregivers seek counseling?Counseling benefits all parents/caregivers of children
with special needsMay be experiencing emotions they are not aware ofProfessionals should ask questions if concerned:
“How are you feeling about everything?”“Do you have a support system?” If so, “Who?”“What do you do to take care of yourself?”
Important to refer to counseling if:Unable to function with day to day activitiesEmotional during most sessionsExpress concerning thoughts
Taking care of yourself is important to you…and your child
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Parental Counseling:Strength and Empowerment-basedSolution FocusedSupportive and InformativeWork through grief process; feelingsProcess expectations of self; child; family
membersEducation on special needs; resourcesJournal WritingScrapbookingLists; LettersConnecting with OthersCoping Skills
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Empowering Parents/CaregiversParents/Caregivers can move forward and can make
decisions that work best for their families
Higher self-confidence can lead to positive parenting
“Walk Life’s Path with Gentle Footsteps” -Flavia
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“Dutch Boy” by Anna Perera page 203
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“Stuff Happens, people do the best they can, and very often they grow and learn thereby”
-Louise Rachel, Mothering
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Online Resources:Children’s Board/Hillsborough County:
www.childrensboard.orgFamily Network on Disabilities of Florida: www.fndfl.orgThe IEP Advocate: www.TheIEPadvocate.comEarly Intervention Program: www.early-intervention.org Florida Diagnostic and Learning Resources System (FDLRS):
fdlrs.mysdhc.org/Sib Shop: www.siblingsupport.org Center for Autism and Related Disabilities: http://card-
usf.fmhi.usf.edu and www.centerforautism.comBright Feats: www.tampabrightfeats.com NICHCY-National Dissemination Center for Children
w/Disabilities: www.nichcy.orgYes! Of America, Inc.: www.yesunited.org
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More Online Resources:Respite Programs: www.cloudsofhope.org/updates/camp-
cheer/ and www.nathanielshope.org/pages/64.asp The Families and Advocates Partnership for Education: www.fape.org TACA: Talk About Curing Autism:
www.talkaboutcuringautism.org Autism Society of America: www.autism-society.org Social Workers: Help Starts Here:
www.helpstartshere.org Crisis Center of Tampa Bay/ 2-1-1 Tampa Bay:
www.211atyourfingertips.org or Call 211 About.com - Special Needs Inspiration Notes:
http://specialchildren.about.com/od/needinspiration/ig/Notes-of-Encouragement
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http://specialchildren.about.com/od/needinspiration/ig/Notes-of-Encouragement/
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Recommended Books: You Will Dream New Dreams: Inspiring Personal
Stories by Parents of Children with Disabilities by Stanley D. Klein, Ph.D. and Kim Schive
Changed by a Child: Companion Notes for Parents of a Child with a Disability by Barbara Gill
After the Tears: Parents Talk about Raising a Child with a Disability by Robin Simons
For the Love of Rachel by David Loewenstein The Elephant in the Playroom by Denise Brodey
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Disclaimer:The photographs used in this presentation
were obtained from Google (Images)
Many thanks to the families that have shared their stories and posted their
pictures on various websites