The Emotional Dynamics ES
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TJFS/TIKVAH Presentation given at Easter Seals parent support group

TJFS/TIKVAH Presentation given at Easter Seals parent support group

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The Emotional Dynamics ES Presentation Transcript

  • 1. Raising Children with Special Needs Presenter: Lydia Abrams, LCSW Tikvah Special Needs Program Coordinator Tampa Jewish Family Services www.tjfs.org
  • 2.
    • 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.
    Learning Objectives:
  • 3. 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.
  • 4. Every Child is an Individual Each Parents’ Experience is Unique Some Families May Have Similarities but None are the Same
  • 5.
    • “ 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
  • 6. 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
  • 7.  
  • 8.  
  • 9. 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.
  • 10. 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
  • 11. 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
  • 12. 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?
  • 13. 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
  • 14.
    • 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:
  • 15. 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
  • 16. 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”
  • 17. 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
  • 18. 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”
  • 19. 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
  • 20. 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
  • 21.
    • 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
  • 22. “ 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
  • 23. 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
  • 24. 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
  • 25. 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)
  • 26. 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 
  • 27. 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
  • 28. 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
  • 29. Forgiveness:
    • Of oneself
    • Of partner
    • Of Higher Power
    • Of child/ren
    • Of Doctors/Other Professionals
  • 30.
    • Anger
    • Resentment
    • Control
    • Wanting things to change/
    • be different
    • Thinking of how things “should have been”
    • Wishing the child were different
    Letting Go:
  • 31. 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
  • 32. 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
  • 33. If the parents’ emotional needs are met – then they can better care for their children
  • 34. “ 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*
  • 35. 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
  • 36. 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
  • 37. 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:
  • 38. 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
  • 39. 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
  • 40. “ 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)
  • 41. 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
  • 42. “ Stuff happens, people do the best they can, and very often they learn and grow thereby.” - Louise Rachel, Mothering
  • 43. 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 Intervention Program
    • www.early-intervention.org
    • 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/
  • 44. 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/
  • 45. http://specialchildren.about.com/od/needinspiration/ig/Notes-of-Encouragement/
  • 46. 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
  • 47. 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