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The Emotional Dynamics
 

The Emotional Dynamics

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Learn emotions that parents/caregivers experience while raising children with special needs; how they can move forward; and local community resources.

Learn emotions that parents/caregivers experience while raising children with special needs; how they can move forward; and local community resources.

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    The Emotional Dynamics The Emotional Dynamics Presentation Transcript

    • Raising Children with Special Needs Presenter: Lydia Abrams, LCSW Tikvah Special Needs Program Coordinator Tampa Jewish Family Services www.tjfs.org
      • 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.
      • For professionals to learn new ways to assist families.
      Learning Objectives:
    • 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.
    • Every Child is an Individual Each Parents’ Experience is Unique Some Families May Have Similarities but None are the Same
      • “ Special Needs ”
      • ADHD
      • Autism Spectrum Disorders
      • 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 Issues
      • Speech or Feeding Issues
      •  
      •  
      • “ Child with a Special Need or Disability ”
      • Person first, then 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
    • Family plans prior to birth of child:
      • An addition to the existing family
      • Dreams of a happy, healthy baby
      • Attempts at having a typical
      • pregnancy and birth
      • Plans for Parenting, Child Care,
      • Education, Career
      • Parental instincts to protect and
      • bond with future baby
      • Or:
      • Unplanned pregnancy
      • Limited support/resources
    •  
    •  
    • Upon initial diagnosis of a child with special needs, most families have begun a journey…. They will experience various emotions… And will hopefully learn how to cope with the unexpected changes in their lives.
    • Feelings of Grief/Loss:
      • Denial and/or Shock
      • Anger
      • Bargaining
      • Depression/Sadness
      • Acceptance/Coping
      • May experience process in different orders
      • Some stages take shorter or longer than others
      • Some never make it to acceptance
    • What are parents/caregivers grieving for? “ The day my child was born, was the day I lost my innocence.” - You Will Dream New Dreams
      • The “happy, healthy” child they were
      • anticipating
      • A “typical” sibling experience for their other
      • children
      • Plans and hopes for the future
      • The child that existed before the
      • special need was diagnosed
      • The life they had prior to the
      • child’s birth/diagnosis
      • Feeling that they were “robbed” of a typical
      • parenting experience
    • Feelings of Anger
      • At themselves
        • What did they do to cause the special need/disability?
        • Unable to protect child or to have prevented special needs
        • They are not able to cope effectively
        • Their partner should be reacting differently
      • Toward their child/ren
        • For having the special need/disability
        • For demanding so much attention
        • For siblings to be more understanding/cooperative
      • Toward the Medical System
        • For having made the diagnosis
        • For having missed the potential for a diagnosis
        • For being invasive/insensitive during diagnosis or treatment/prolonged treatment
      • Toward their Treatment Team
        • Expectations/Amount of treatment recommended
        • Labeling children
        • “ We know your child’s needs better than you do”
      • Toward their Religious Belief System
        • Why would their belief in a higher power/universe allow this to happen?
        • What did they do to “deserve” this?
    • Feelings of Guilt: Unable to protect child Child’s suffering “ What did I do to cause this?” “ How could I have prevented this?” Less attention toward other children Loss of intimacy with partner Less focus on personal needs
      • Feelings associated with Depression
      • Not wanting to interact with others (Having to explain condition and answer questions)
      • Resentment toward others with “typical children”
      • “ No one else understands”
      • Other people uncomfortable
      • around child
      • Financially unable to do activities
      • Difficulty meeting child’s special
      • needs outside of the home
      Feelings of Isolation:
    • Decreased Confidence:
      • Self-confidence as a parent can be diminished because society does not appear to value their child with special needs equally to other children
      • The “right parenting decisions” that work for children with out special needs do not always work for their child 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
    • Fear / Worry:
      • Child’s Progress
      • Child’s future 
      • Educational needs 
      • Social Skills
      • Ability to live independently when older 
      • Safety or possible death 
      • Stable relationship with partner 
      • Own mental health 
      • Next “crisis”
    • Feeling Overwhelmed:
      • May not have prior medical or advocacy experiences
      • Learning the details of child’s special needs and about related treatment
      • Managing appointments for various specialists
      • Dealing with insurance coverage
      • and financial concerns
      • Managing time to meet all of the
      • family’s needs
      • Uncertainty for the future
      • Constant battles for accommodations
      • As children get older, they are faced
      • with new, unexpected challenges
      • May be late or miss scheduled appointments
    • Feelings of Detachment:
      • “ Easier than facing challenges”
      • Over-involvement with work or other activities
      • Limited involvement in child’s treatment or care
      • Focus on things that can be controlled
      • Over-focus on child – detach from other areas
      • Despair: “There is nothing I can do to make it better”
      • Denial: “Nothing is wrong”
    • Feelings of Relief:
      • To have a diagnosis
      • To learn what treatment is indicated
      • To be educated on the services that are available to assist their child
      • To let go of feelings of fault or control
    • Other Stressors:
      • Lack of accommodations for child 
      • Child’s Individualized Education Plan (IEP) 
      • Attempting to meet needs of other family members 
      • Making choices regarding child’s treatment 
      • Dealing with other people’s reactions and opinions 
      • Decrease in support system
      • Own health concerns; sleep deprivation 
      • Lack of self-care
      • Symptoms of PTSD
      • Nurse
      • Researcher
      • Advocate
      • Case Manager
      Role Changes
      • Therapist
      • Nutritionist
      • Educator
      • Playmate
      Can forget that they are the parent of their child first Parents/primary caregivers can unexpectedly become… … For their child
    • “ Roller Coaster Ride”
      • Emotional high’s and low’s
      • Feeling Overwhelmed
      • “ Just when I think things are improving….
      • something else goes wrong”
      • Constant state of crisis
    • Extended Family Members Other Committ- ments Therapies Finances Careers Schools Medications Hospitals/ Clinics/ Labs Community Accomodations Insurance Companies Early Steps Or Related Programs Specialized Equipments Case Worker Specialized Physician(s) Primary Pediatrian Spouse Other Children Child/ren With Special Needs Parents/ Primary Caregivers
    • Gaining Acceptance/Coping Skills
      • Build a strong support system:
      • Meet and interact with other families of children with special needs (including those with different kinds of special needs)
      • Locate or start a support group 
      • Seek discussion boards on the internet 
      • Re-establish relationship with partner 
      • Locate a therapist to address feelings 
      • Surround self with nurturing people that are accepting of child and parenting choices 
      • Utilize a treatment team that is supportive and empowers parents/primary
      • caregivers to make choices
      • that are right for their family
    • Find Balance:
      • Exercise 
      • Find enjoyable social activities 
      • Work outside of home (Part-time or Volunteer)
      • Meditate/Relaxation Exercises 
      • Utilize a baby sitter/Respite programs
      • Fun activities as a family 
      • “ Alone time” with partner  
      • “ Alone time” with self
      Read:
      • Books by other families with
      • children with special needs
      • Leisure books/magazines
      • (even as short as 15 minutes
      • per day)
    • Acknowledge Positive Aspects of Child and Life:
      • Recognize child as a fighter 
      • See gains child has made 
      • Realize own wisdom and strength 
      • Involvement in other children’s lives
      Love Child for the Person He/She is:
      • Identify what child has instead of what
      • he/she does not have 
      • Acknowledge child as
      • an individual who may
      • have different life goals 
      • Learn ways to accept
      • child for who she/he is 
    • Other Ways to Gain Acceptance/Coping Skills:
      • Identify ways to increase confidence ( In parenting skills;
      • Understanding of conditions)
      • Change f ocus on things that can be controlled – not
      • on those that can’t be controlled
      • Focus on the present rather than on the future
      • Utilize religious/spiritual beliefs
      • Practice Assertiveness Skills
      • Feelings of crisis may have passed
      • Nurture oneself, meet own needs –
      • regain some “sense of self”
      • Life is about change: All parents are faced with
      • different challenges related to their children
    • Patience:
      • With oneself as information is sought and when changes occur
      • With child as she/he learns new therapies and copes with changes
      • With medical/therapy teams as treatment options are identified
      • With family members as they cope with changes
      • Be kind/gentle with
      • oneself
    • Forgiveness:
      • Of oneself
      • Of partner
      • Of Higher Power
      • Of child/ren
      • Of Doctors/Other Professionals
      • Anger
      • Resentment
      • Control
      • Wanting things to change/
      • be different
      • Thinking of how things “should have been”
      • Wishing the child were different
      Letting Go:
    • Writing as a form of Healing:
      • Journal Writing (Let it all out – no one
      • else will see it)
      • Blogging
      • Scrapbooking
      • Photo-journaling
      • Write letters
      • (to self; child; partner;
      • professionals; higher power)
      • Can choose whether or not to
      • send the letters
    • Feelings of Acceptance may Come and Go Some may never accept situation; but may learn to cope “ It is the journey that counts – not the destination.” - You Will Dream New Dreams
    • If the parents’ emotional needs are met – then they can better care for their children
    • Many Parents/Primary Caregivers Benefit From Professionals Who Practice:
      • Empathy
      • Compassion
      • Understanding
      • Patience
      • Hope
      • Listening
      • Inclusion
      Parents/Caregivers and Professionals are a team that are working toward the best interest of the child
    • Core Services That Can Assist Families:
      • Individual Counseling
      • Family Counseling
      • Resource Library
      • Information and Referral
      • Community Outreach
      • Networking with service providers
      • Professional Continuing Education
      • Respite Programs; Buddy Programs
      • Social Programs
      • Resource Fairs
      • Play Therapy for child and siblings
      • Parent Support Group Services
      • Sibling Support Group Services
    • Parental Counseling:
      • Strength and Empowerment-based
      • Solution-focused
      • Supportive and Informative
      • Work through grief process; feelings
      • Process expectations of self, child
      • Education on special needs, resources
      • Journal Writing
      • Scrap booking
      • Lists; Letters
      • Connecting with others
      • Coping Skills
    • “ Who Are The People In Your Neighborhood?”
      • The Children’s Board
      • Physical, Occupational, Speech Therapists
      • Pediatricians / Developmental Pediatricians
      • Alternative Medical Providers
      • Behavior Specialists
      • Early Intervention and School-Based Programs
      • Public, Private, and Charter School Systems
      • Other Special Needs Programs (i.e. UCP, FDLRS)
      • Hospitals (In- and Out-patient)
      • Psychologists and Psychiatrists
      • Early Childhood Council
      • County-based Programs
      • Center for Independent Living
      *Networking is vital for learning about resources in your community*
    • Tips For Professionals:
      • Ask the parents/guardians how they are doing
      • Allow them to tell “their story” (About experiences surrounding diagnosis, how child was before and after diagnosis, how they are coping)
      • Validate their feelings
      • Express hope for their future (when appropriate)
      • Praise them for their strengths
      • Encourage them to utilize a supportive treatment team that allows them to feel a part of the decision-making process
      • Empower them to advocate for their child and to make decisions for their child
      • Help them to feel that their opinions about child and treatment matter
    • More Tips:
      • See the “whole child”; see them as an individual
      • Avoid labels when possible
      • Connect them with community resources
      • Educate that there are options: various types of treatments, differing opinions of practitioners, assistive technology, I.E.P.
      • Acknowledge the steps that child has made
      • Connect clients with similar issues
      • Be flexible with homework (they have to juggle a lot of appointments/expectations )
      • Remember and remark on the progress the child has made
      • Encourage parents to identify solutions that work in their lives/family system
    • Helpful things for professionals
      • 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?”
      • “ What has worked for you in the past?”
      • “ You are capable of making the right decisions for your family.”
      • “ How is (it) working for you?”
      • “ What are your/your child’s strengths?”
      • “ Other families have found (this) helpful.”
      to say:
    • “ What if the shoe doesn’t fit?”
      • There is more than one way to conduct
      • treatment on the same child
      • Just as each specialist is an individual
      • with different approaches – every family of
      • children with special needs is unique – all
      • forms of treatment will not work for every
      • family
      • Flexibility and understanding
      • It is okay to refer out
      • (Counseling or a different provider)
    • When should parents/caregivers seek counseling?
      • Counseling benefits all parents/caregivers of children with special needs
      • Parents/caregivers may be experiencing emotions that they are not even aware of
      • Professionals 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/seek if they are:
        • Unable to function with day to day
        • activities
        • Emotional during most sessions
        • Express concerning thoughts
      “ Taking care of yourself is important to you….and your child” - specialparentsupport.com
    • Empowering Parents/Primary Caregivers Parents/caregivers are capable of making decisions that work for their families Higher self-confidence can lead to positive parenting “ Walk life’s path with gentle footsteps” -Flavia
    • “ Stuff happens, people do the best they can, and very often they learn and grow thereby.” - Louise Rachel, Mothering
    • Online Resources:
      • Children’s Board/Hillsborough County: http://www.childrensboard.org/calendar.aspx
      • Family Network on Disabilities of Florida: www.fndfl.org
      • The IEP Advocate:
      • TheIEPadvocate.com
      • Early Steps Program: www.doh.state.fl.us/alternatesites/cms-kids/EarlyStepsHome.htm
      • Sib Shop: www.siblingsupport.org
      • Bright Feats:
      • www.tampa.brightfeats.com
      • Center for Autism and Related Disabilities:
      • http://card- usf.fmhi.usf.edu /
    • More Online Resources:
      • The Family Center on Technology and Disability: www.fctd.info
      • The Families and Advocates Partnership for Education:
      • www.fape.org
      • TACA: Talk About Curing Autism: www.talkaboutcuringautism.org
      • Florida Alliance for Assistive Services and Technology: www.faast.org
      • Autism Society of America:
      • www.autism-society.org
      • www.specialparentsupport.com
      • Social Workers: Help Starts Here
      • www.helpstartshere.org
      • About.com - Special Needs Inspiration Notes
      • http://specialchildren.about.com/od/needinspiration/ig/Notes-of-Encouragement/
    • http://specialchildren.about.com/od/needinspiration/ig/Notes-of-Encouragement/
    • 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
    • Disclaimer:
      • The photographs used in this presentation were obtained from Google (Images)
      • Many thanks to the families that have bravely shared their stories and proudly posted their pictures on various websites