Kol ami presentation


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Tampa Jewish Family Services presents the emotional dynamics that parents/caregivers of children with special needs experience. Coping Skills, Tips for Professionals, and online resources included.

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Kol ami presentation

  1. 1. Lydia Abrams, LCSW TIKVAH Special Needs Program Coordinator Tampa Jewish Family Services www.tjfs.org
  2. 2. Learning Objectives: <ul><li>To increase understanding of the emotional impacts of raising children with special needs. </li></ul><ul><li>For parents/caregivers to learn that they are “not alone” and that their feelings are normal. </li></ul><ul><li>To learn new resources and ways to assist families. </li></ul>
  3. 3. <ul><li>This presentation does not reflect the experiences of all parents/primary caregivers of children with special needs. </li></ul><ul><li>Each family unit and every family member experiences the impacts of raising a child with special needs in their own unique way. </li></ul>
  4. 4. <ul><li>Every Child is an Individual </li></ul><ul><li>Each Parents’ Experience is Unique </li></ul><ul><li>Some Families May Have Similarities but </li></ul><ul><li>None are the Same </li></ul>
  5. 5. “ Children First” <ul><li>“ Child with a Special Need or Disability” </li></ul><ul><li>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 </li></ul>
  6. 6. “ Special Needs” <ul><li>ADHD </li></ul><ul><li>Autism Spectrum </li></ul><ul><li>Behavioral Concerns </li></ul><ul><li>Blind/Visually Impaired </li></ul><ul><li>Cerebral Palsy </li></ul><ul><li>Deaf/Hearing Impaired </li></ul><ul><li>Developmental Delays </li></ul><ul><li>Different Physical Abilities </li></ul><ul><li>Down Syndrome </li></ul><ul><li>Genetic Conditions </li></ul><ul><li>Health or Medical Issues </li></ul><ul><li>Learning Delays </li></ul><ul><li>Mental Health Issues </li></ul><ul><li>Premature Birth </li></ul><ul><li>Sensory Processing Issues </li></ul><ul><li>Speech or Feeding Issues </li></ul>
  7. 7. “ Welcome To Holland” by Emily Perl Kingsley page 216
  8. 8. Family Plans Prior to Birth: <ul><li>An addition to the existing family </li></ul><ul><li>Expectation of a happy, healthy baby and typical birth </li></ul><ul><li>Future plans for parenting, childcare, education, career </li></ul><ul><li>Parental instincts to protect and bond with baby </li></ul><ul><li>Unplanned Pregnancy </li></ul><ul><li>Limited support/resources </li></ul>
  9. 11. Feelings of Grief/Loss: <ul><li>Denial and/or Shock </li></ul><ul><li>Anger </li></ul><ul><li>Bargaining </li></ul><ul><li>Depression/Sadness </li></ul><ul><li>Acceptance/Coping </li></ul><ul><li>May experience process in different orders </li></ul><ul><li>Some stages take shorter or longer than others </li></ul><ul><li>Some never make it to acceptance </li></ul>
  10. 12. What are parents/caregivers grieving for? <ul><li>The “typical” child they were anticipating </li></ul><ul><li>The “typical” sibling experience for other child </li></ul><ul><li>Plans and hopes for the future </li></ul><ul><li>The child that existed before the diagnosis </li></ul><ul><li>The life they had prior to the child/diagnosis </li></ul><ul><li>Feeling they were “robbed” of a typical </li></ul><ul><li>parenting experience </li></ul><ul><li>“ The day my child was born was the day I lost my </li></ul><ul><li>innocence.” You Will Dream New Dreams </li></ul>
  11. 13. Feelings of Anger: <ul><li>At themselves </li></ul><ul><li>Toward their child/ren </li></ul><ul><li>Toward the medical system </li></ul><ul><li>Toward their treatment team </li></ul><ul><li>Toward their religious belief system </li></ul>
  12. 14. Feelings of Guilt: <ul><li>Unable to protect child/child’s suffering </li></ul><ul><li>Less attention toward other children </li></ul><ul><li>Less focus on personal needs </li></ul><ul><li>Less of a connection with partner </li></ul><ul><li>“ What did I do to cause this?” </li></ul><ul><li>“ How could I have prevented this?” </li></ul>
  13. 15. Feelings of Isolation: <ul><li>Some family members and friends not </li></ul><ul><li>as involved or supportive </li></ul><ul><li>Other people uncomfortable around child </li></ul><ul><li>Not wanting to explain conditions and </li></ul><ul><li>answer questions </li></ul><ul><li>“ No one else understands” </li></ul><ul><li>Financially unable to do activities </li></ul><ul><li>Difficulty meeting child’s special needs outside the home </li></ul><ul><li>Feelings associated with Depression </li></ul>
  14. 16. Decreased confidence in parenting skills: <ul><li>Society does not appear to value children with special needs equally to “typical” children </li></ul><ul><li>Effective parenting skills that work for “typical” children do not always work for children with special needs </li></ul><ul><li>Families of children with special needs are seen by many professionals who assign various labels </li></ul><ul><li>Feelings of vulnerability when working with professionals </li></ul>
  15. 17. Fear and Worry: <ul><li>Child’s Progress </li></ul><ul><li>Child’s Future </li></ul><ul><li>Educational Needs </li></ul><ul><li>Social Skills </li></ul><ul><li>Ability to live independently when older </li></ul><ul><li>Safety or possible death </li></ul><ul><li>Own Mental Health </li></ul><ul><li>Stable relationship with partner </li></ul><ul><li>Next “crisis” </li></ul>
  16. 18. Feeling Overwhelmed: <ul><li>May not have prior medical or advocacy experience </li></ul><ul><li>Learning details about child’s special needs and related treatment </li></ul><ul><li>Managing appointments for various specialists </li></ul><ul><li>Dealing with insurance coverage and financial concerns </li></ul><ul><li>Managing time to meet all of the family member’s needs </li></ul><ul><li>Uncertainty for the future </li></ul><ul><li>Ensuring accommodations for child </li></ul><ul><li>As children get older – new, </li></ul><ul><li>unexpected challenges emerge </li></ul><ul><li>May be late or miss scheduled appointments </li></ul>
  17. 19. Feelings of Detachment: <ul><li>“ Easier than facing challenges” </li></ul><ul><li>Over-involvement with work or other activities </li></ul><ul><li>Limited involvement in child’s treatment or care </li></ul><ul><li>Focus on things that can be controlled </li></ul><ul><li>High focus on child – detach from other areas </li></ul><ul><li>Despair: “There is nothing I can do to make it better” </li></ul><ul><li>Denial: “There is nothing wrong” </li></ul><ul><li>Symptoms of PTSD </li></ul><ul><li>Lack of self care/sleep, deteriorating </li></ul><ul><li>health </li></ul>
  18. 20. “ Roller Coaster Ride” <ul><li>Emotional High’s and Low’s </li></ul><ul><li>“ Just when I think things are improving - </li></ul><ul><li>something else goes wrong” </li></ul><ul><li>Constant state of crisis </li></ul>
  19. 21. Feelings of Relief: <ul><li>To have a diagnosis </li></ul><ul><li>To learn what treatment is indicated </li></ul><ul><li>To be educated on services that are available to assist child </li></ul><ul><li>To let go of feelings of fault or control </li></ul>
  20. 22. Role Changes: <ul><li>Parents/Primary Caregivers can unexpectantly become… </li></ul><ul><li>Nurse </li></ul><ul><li>Researcher </li></ul><ul><li>Advocate </li></ul><ul><li>Case Manager </li></ul><ul><li>Therapist </li></ul><ul><li>Nutritionist </li></ul><ul><li>Educator </li></ul><ul><li>Playmate </li></ul><ul><li>… For their child </li></ul><ul><li>Can forget they are the parent of their child first </li></ul>
  21. 24. “ Survival” page 22
  22. 25. <ul><li>Most families of children with special needs are on a journey </li></ul><ul><li>They will experience various emotions </li></ul><ul><li>They can learn how to cope with the unexpected changes in their lives </li></ul>Gaining Acceptance/Coping Skills:
  23. 26. Build a Strong Support System: <ul><li>Families of children with special needs (including those with different types of special needs) </li></ul><ul><li>Locate or start a support group </li></ul><ul><li>Surround self with nurturing people that are accepting of child and parenting choices </li></ul><ul><li>Utilize a treatment team that is supportive and empowering </li></ul><ul><li>Re-establish relationship with partner </li></ul><ul><li>Discussion boards on the internet </li></ul>
  24. 27. Find Balance: <ul><li>Exercise </li></ul><ul><li>Enjoyable social activities </li></ul><ul><li>Work outside of home (volunteer or part-time work) </li></ul><ul><li>Meditate/Relaxation exercises </li></ul><ul><li>Utilize babysitter/Respite Programs </li></ul><ul><li>Fun activities as a family </li></ul><ul><li>“ Alone time” with partner/self </li></ul><ul><li>Read leisure books/magazines, books by </li></ul><ul><li>other parents of children with special needs </li></ul><ul><li>Find 15 minutes per day </li></ul>
  25. 28. Acknowledge Positive Aspects of Child and Life: <ul><li>Recognize child as a fighter </li></ul><ul><li>See gains child has made </li></ul><ul><li>Realize own wisdom and strength </li></ul><ul><li>Involvement in other children’s lives </li></ul><ul><li>Identify what the child has instead of what she/he does not have </li></ul><ul><li>Child is his/her own individual with different life goals </li></ul><ul><li>Learn ways to accept child for the person he/she is </li></ul>
  26. 29. Patience: <ul><li>With oneself as information is sought and when changes occur </li></ul><ul><li>With child as she/he learns new therapies and copes with changes </li></ul><ul><li>With medical/therapy teams as treatment options are identified and carried out </li></ul><ul><li>With family members as they cope with changes </li></ul><ul><li>Be kind and gentle with oneself </li></ul>
  27. 30. Practice Forgiveness: <ul><li>Of oneself </li></ul><ul><li>Of partner </li></ul><ul><li>Of child/ren </li></ul><ul><li>Of doctors and/or other professionals </li></ul><ul><li>Of Higher Power </li></ul>
  28. 31. Letting Go: <ul><li>Anger </li></ul><ul><li>Control </li></ul><ul><li>Resentment </li></ul><ul><li>Wanting things to change </li></ul><ul><li>Thinking of how “things should have been” </li></ul><ul><li>Wishing the child was different </li></ul>
  29. 32. Writing as a tool for healing: <ul><li>Journal Writing (Let it all out – no one else will see it) </li></ul><ul><li>Blogging </li></ul><ul><li>Scrapbooking </li></ul><ul><li>Photo-journaling (see progress) </li></ul><ul><li>Write letters (to self, child, partner, </li></ul><ul><li>professionals, higher power) </li></ul><ul><li>Can choose whether or not to </li></ul><ul><li>send letters </li></ul>
  30. 33. More coping skills: <ul><li>Change focus on things that can be controlled – instead of things that can’t be controlled </li></ul><ul><li>Focus on the present rather than the future </li></ul><ul><li>Practice Assertiveness skills </li></ul><ul><li>Nurture oneself, meet own needs, </li></ul><ul><li>regain “sense of self” </li></ul><ul><li>Utilize religious/spiritual </li></ul><ul><li>belief system </li></ul><ul><li>Feelings of crisis may have passed </li></ul><ul><li>Life is about change – all parents are faced with different types of challenges related to their children </li></ul>
  31. 34. <ul><li>Some may never accept the situation - but may learn to cope </li></ul><ul><li>“ It is the journey that counts – not the destination” </li></ul><ul><li>- You Will Dream New Dreams </li></ul>Feelings of Acceptance May Come and Go
  32. 35. If parent’s emotional needs are met – then they can better care for their children
  33. 36. Many parents/caregivers benefit from professionals that practice: <ul><li>Empathy </li></ul><ul><li>Compassion </li></ul><ul><li>Understanding </li></ul><ul><li>Patience </li></ul><ul><li>Hope </li></ul><ul><li>Listening </li></ul><ul><li>Inclusion </li></ul><ul><li>Parents/Caregivers and professionals are a team that are working toward the best interest of the child </li></ul>
  34. 37. Empathy: <ul><li>The capability to share and understand another’s emotions and feelings </li></ul><ul><li>The ability to “put oneself in another’s shoes” </li></ul><ul><li>A person does not need to have had the same experiences as the other person in order to practice empathy </li></ul>
  35. 38. Empathy Exercise: <ul><li>Find a partner </li></ul><ul><li>Both partners share an experience that you have had with a parent/caregiver in which you practiced empathy to assist in meeting their emotional needs </li></ul><ul><li>Both partners list some helpful things that could be said to the parent/caregiver </li></ul><ul><li>Share with the group </li></ul>
  36. 39. “ Form a Partnership” page 51
  37. 40. Helpful things for professionals to say: <ul><li>Just listen </li></ul><ul><li>“ You are not alone.” </li></ul><ul><li>“ How are you doing/feeling?” </li></ul><ul><li>“ What do you want from treatment?” </li></ul><ul><li>“ What does your instinct tell you?” </li></ul><ul><li>“ What type of support system do you have?” </li></ul><ul><li>“ How are you taking care of yourself?” </li></ul><ul><li>“ You are capable of making the right decisions for your family.” </li></ul><ul><li>“ How is the treatment working for you and your family?” </li></ul><ul><li>“ What are your child’s strengths?” </li></ul><ul><li>“ Other families have found (this) helpful.” </li></ul>
  38. 41. Tips for Professionals: <ul><li>Ask Parents/Guardians how they are </li></ul><ul><li>doing </li></ul><ul><li>Allow them to “tell their story” </li></ul><ul><li>Validate their feelings </li></ul><ul><li>Express hope for the future (when appropriate) </li></ul><ul><li>Praise them for their strengths </li></ul><ul><li>Encourage them to utilize a supportive treatment team </li></ul><ul><li>Empower them to advocate for their child and make decisions for their child </li></ul><ul><li>Help them to feel that their opinions about child and treatment matter </li></ul>
  39. 42. More tips: <ul><li>See the “whole child”; </li></ul><ul><li>See them as an individual </li></ul><ul><li>Avoid labels when possible </li></ul><ul><li>Connect them with community resources </li></ul><ul><li>Educate that there are options (treatments, professionals, assistive devices, etc.) </li></ul><ul><li>Acknowledge the steps the child has made </li></ul><ul><li>Connect clients with similar issues </li></ul><ul><li>Be flexible with homework (they have a lot to juggle) </li></ul><ul><li>Encourage parents to find solutions that work for them </li></ul><ul><li>Take time from therapy to talk – it can make a world of difference in future sessions </li></ul>
  40. 43. Core Services that can assist families: <ul><li>Individual Counseling </li></ul><ul><li>Family Counseling </li></ul><ul><li>Information on Community Resources </li></ul><ul><li>Respite Programs; Buddy Programs </li></ul><ul><li>Resource Fairs </li></ul><ul><li>Play Therapy for child and siblings </li></ul><ul><li>Parent support groups </li></ul><ul><li>Sibling Support Groups </li></ul><ul><li>Parent Workshops </li></ul><ul><li>Community Outreach/Networking </li></ul>
  41. 44. Who Are The People In Your Neighborhood? <ul><li>Physical, Occupational, Speech Therapists </li></ul><ul><li>Pediatricians/Developmental Pediatricians </li></ul><ul><li>Agencies serving families and individuals with Special Needs </li></ul><ul><li>Psychologists, Psychiatrists, Social Workers, Therapists, Case Managers </li></ul><ul><li>Behavior Specialists </li></ul><ul><li>Alternative Medical Providers </li></ul><ul><li>Early Intervention and School Based-Programs </li></ul><ul><li>Children’s Board; Early Childhood Council </li></ul><ul><li>Public, Charter, Private School Systems </li></ul><ul><li>Hospitals (In- and Out-patient) </li></ul><ul><li>Networking is vital to learning about resources in </li></ul><ul><li>your community </li></ul>
  42. 45. “ What if the shoe doesn’t fit?” <ul><li>There is more than one way to conduct treatment on the same child. </li></ul><ul><li>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. </li></ul><ul><li>Flexibility and understanding is key. </li></ul><ul><li>It is okay to refer out/seek another </li></ul><ul><li>professional who may be a better “fit”. </li></ul>
  43. 46. When should parents/caregivers seek counseling? <ul><li>Counseling benefits all parents/caregivers of children with special needs </li></ul><ul><li>May be experiencing emotions they are not aware of </li></ul><ul><li>Professionals should ask questions if concerned: </li></ul><ul><ul><li>“ How are you feeling about everything?” </li></ul></ul><ul><ul><li>“ Do you have a support system?” If so, “Who?” </li></ul></ul><ul><ul><li>“ What do you do to take care of yourself?” </li></ul></ul><ul><li>Important to refer to counseling if: </li></ul><ul><ul><li>Unable to function with day to day activities </li></ul></ul><ul><ul><li>Emotional during most sessions </li></ul></ul><ul><ul><li>Express concerning thoughts </li></ul></ul><ul><li>Taking care of yourself is important to you…and your child </li></ul>
  44. 47. Parental Counseling: <ul><li>Strength and Empowerment-based </li></ul><ul><li>Solution Focused </li></ul><ul><li>Supportive and Informative </li></ul><ul><li>Work through grief process; feelings </li></ul><ul><li>Process expectations of self; child; family members </li></ul><ul><li>Education on special needs; resources </li></ul><ul><li>Journal Writing </li></ul><ul><li>Scrapbooking </li></ul><ul><li>Lists; Letters </li></ul><ul><li>Connecting with Others </li></ul><ul><li>Coping Skills </li></ul>
  45. 48. Empowering Parents/Caregivers <ul><li>Parents/Caregivers can move forward and can make decisions that work best for their families </li></ul><ul><li>Higher self-confidence can lead to positive parenting </li></ul>“ Walk Life’s Path with Gentle Footsteps” -Flavia
  46. 49. “ Dutch Boy” by Anna Perera page 203
  47. 50. <ul><li>“ Stuff Happens, people do the best they can, and very often they grow and learn thereby” </li></ul><ul><li> -Louise Rachel, Mothering </li></ul>
  48. 51. Online Resources: <ul><li>Children’s Board/Hillsborough County: www.childrensboard.org </li></ul><ul><li>Family Network on Disabilities of Florida: www.fndfl.org </li></ul><ul><li>The IEP Advocate: www. TheIEPadvocate.com </li></ul><ul><li>Early Intervention Program: www.early-intervention.org </li></ul><ul><li>Florida Diagnostic and Learning Resources System (FDLRS): fdlrs.mysdhc.org/ </li></ul><ul><li>Sib Shop: www.siblingsupport.org </li></ul><ul><li>Center for Autism and Related Disabilities: http://card-usf.fmhi.usf.edu and www.centerforautism.com </li></ul><ul><li>Bright Feats: www.tampabrightfeats.com </li></ul><ul><li>NICHCY-National Dissemination Center for Children w/Disabilities: www.nichcy.org </li></ul><ul><li>Yes! Of America, Inc.: www.yesunited.org </li></ul>
  49. 52. More Online Resources: <ul><li>Respite Programs: www.cloudsofhope.org/updates/camp-cheer/ </li></ul><ul><li>and www.nathanielshope.org/pages/64.asp </li></ul><ul><li>The Families and Advocates Partnership for </li></ul><ul><li>Education: www.fape.org </li></ul><ul><li>TACA: Talk About Curing Autism: www.talkaboutcuringautism.org </li></ul><ul><li>Autism Society of America: www.autism-society.org </li></ul><ul><li>Social Workers: Help Starts Here: www.helpstartshere.org </li></ul><ul><li>Crisis Center of Tampa Bay/ 2-1-1 Tampa Bay: www.211atyourfingertips.org or Call 211  </li></ul><ul><li>About.com - Special Needs Inspiration Notes: http://specialchildren.about.com/od/needinspiration/ig/Notes-of-Encouragement </li></ul>
  50. 53. http://specialchildren.about.com/od/needinspiration/ig/Notes-of-Encouragement/
  51. 54. Recommended Books: <ul><li>You Will Dream New Dreams: Inspiring Personal Stories by Parents of Children with Disabilities by Stanley D. Klein, Ph.D. and Kim Schive </li></ul><ul><li>Changed by a Child: Companion Notes for Parents of a Child with a Disability by Barbara Gill </li></ul><ul><li>After the Tears: Parents Talk about Raising a Child with a Disability by Robin Simons </li></ul><ul><li>For the Love of Rachel </li></ul><ul><li>by David Loewenstein </li></ul><ul><li>The Elephant in the Playroom </li></ul><ul><li>by Denise Brodey </li></ul>
  52. 55. Disclaimer: <ul><li>The photographs used in this presentation were obtained from Google (Images) </li></ul><ul><li>Many thanks to the families that have shared their stories and posted their pictures on various websites </li></ul>