The document provides an overview of the emotional impacts and challenges faced by parents and caregivers of children with special needs, emphasizing that each family's experience is unique. It discusses the range of feelings such as grief, anger, and isolation, while offering coping strategies, resources, and the importance of support systems. Ultimately, it highlights the necessity for empathy from both professionals and caregivers to foster understanding and empowerment in navigating the complexities of raising a child with special needs.

1. Lydia Abrams, LCSW TIKVAH Special Needs Program Coordinator Tampa Jewish Family Services www.tjfs.org

2. 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.

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. “ 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

6. “ 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

7. “ Welcome To Holland” by Emily Perl Kingsley page 216

8. Family Plans Prior to Birth: An addition to the existing family Expectation of a happy, healthy baby and typical birth Future plans for parenting, childcare, education, career Parental instincts to protect and bond with baby Unplanned Pregnancy Limited support/resources

11. 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

12. What are parents/caregivers grieving for? The “typical” child they were anticipating The “typical” sibling experience for other child Plans and hopes for the future The child that existed before the diagnosis The life they had prior to the child/diagnosis Feeling 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

13. Feelings of Anger: At themselves Toward their child/ren Toward the medical system Toward their treatment team Toward their religious belief system

14. Feelings of Guilt: Unable to protect child/child’s suffering Less attention toward other children Less focus on personal needs Less of a connection with partner “ What did I do to cause this?” “ How could I have prevented this?”

15. Feelings of Isolation: Some family members and friends not as involved or supportive Other people uncomfortable around child Not wanting to explain conditions and answer questions “ No one else understands” Financially unable to do activities Difficulty meeting child’s special needs outside the home Feelings associated with Depression

16. Decreased confidence in parenting skills: Society does not appear to value children with special needs equally to “typical” children Effective 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

17. Fear and Worry: Child’s Progress Child’s Future Educational Needs Social Skills Ability to live independently when older Safety or possible death Own Mental Health Stable relationship with partner Next “crisis”

18. Feeling Overwhelmed: May not have prior medical or advocacy experience Learning details about child’s special needs and related treatment Managing appointments for various specialists Dealing with insurance coverage and financial concerns Managing time to meet all of the family member’s needs Uncertainty for the future Ensuring accommodations for child As children get older – new, unexpected challenges emerge May be late or miss scheduled appointments

19. 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 High focus on child – detach from other areas Despair: “There is nothing I can do to make it better” Denial: “There is nothing wrong” Symptoms of PTSD Lack of self care/sleep, deteriorating health

20. “ Roller Coaster Ride” Emotional High’s and Low’s “ Just when I think things are improving - something else goes wrong” Constant state of crisis

21. Feelings of Relief: To have a diagnosis To learn what treatment is indicated To be educated on services that are available to assist child To let go of feelings of fault or control

22. Role Changes: Parents/Primary Caregivers can unexpectantly become… Nurse Researcher Advocate Case Manager Therapist Nutritionist Educator Playmate … For their child Can forget they are the parent of their child first

24. “ Survival” page 22

25. Most families of children with special needs are on a journey They will experience various emotions They can learn how to cope with the unexpected changes in their lives Gaining Acceptance/Coping Skills:

26. Build a Strong Support System: Families of children with special needs (including those with different types of special needs) Locate or start a support group Surround self with nurturing people that are accepting of child and parenting choices Utilize a treatment team that is supportive and empowering Re-establish relationship with partner Discussion boards on the internet

27. Find Balance: Exercise Enjoyable social activities Work outside of home (volunteer or part-time work) Meditate/Relaxation exercises Utilize babysitter/Respite Programs Fun activities as a family “ Alone time” with partner/self Read leisure books/magazines, books by other parents of children with special needs Find 15 minutes per day

28. 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 Identify what the child has instead of what she/he does not have Child is his/her own individual with different life goals Learn ways to accept child for the person he/she is

29. 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 and carried out With family members as they cope with changes Be kind and gentle with oneself

30. Practice Forgiveness: Of oneself Of partner Of child/ren Of doctors and/or other professionals Of Higher Power

31. Letting Go: Anger Control Resentment Wanting things to change Thinking of how “things should have been” Wishing the child was different

32. Writing as a tool for healing: Journal Writing (Let it all out – no one else will see it) Blogging Scrapbooking Photo-journaling (see progress) Write letters (to self, child, partner, professionals, higher power) Can choose whether or not to send letters

33. More coping skills: Change focus on things that can be controlled – instead of things that can’t be controlled Focus on the present rather than the future Practice Assertiveness skills Nurture oneself, meet own needs, regain “sense of self” Utilize religious/spiritual belief system Feelings of crisis may have passed Life is about change – all parents are faced with different types of challenges related to their children

34. 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

35. If parent’s emotional needs are met – then they can better care for their children

36. Many parents/caregivers benefit from professionals that 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. Empathy: The capability to share and understand another’s emotions and feelings The 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

38. Empathy Exercise: Find a partner 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 Both partners list some helpful things that could be said to the parent/caregiver Share with the group

39. “ Form a Partnership” page 51

40. 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.”

41. Tips for Professionals: Ask Parents/Guardians how they are doing Allow them to “tell their story” Validate their feelings Express hope for the future (when appropriate) Praise them for their strengths Encourage them to utilize a supportive treatment team Empower them to advocate for their child and make decisions for their child Help them to feel that their opinions about child and treatment matter

42. 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 (treatments, professionals, assistive devices, etc.) Acknowledge the steps the child has made Connect clients with similar issues Be flexible with homework (they have a lot to juggle) Encourage parents to find solutions that work for them Take time from therapy to talk – it can make a world of difference in future sessions

43. Core Services that can assist families: Individual Counseling Family Counseling Information on Community Resources Respite Programs; Buddy Programs Resource Fairs Play Therapy for child and siblings Parent support groups Sibling Support Groups Parent Workshops Community Outreach/Networking

44. Who Are The People In Your Neighborhood? Physical, Occupational, Speech Therapists Pediatricians/Developmental Pediatricians Agencies serving families and individuals with Special Needs Psychologists, Psychiatrists, Social Workers, Therapists, Case Managers Behavior Specialists Alternative Medical Providers Early Intervention and School Based-Programs Children’s Board; Early Childhood Council Public, Charter, Private School Systems Hospitals (In- and Out-patient) Networking is vital to learning about resources in your community

45. “ 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”.

46. When should parents/caregivers seek counseling? Counseling benefits all parents/caregivers of children with special needs May be experiencing emotions they are not 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 to counseling if: 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

47. Parental Counseling: Strength and Empowerment-based Solution Focused Supportive and Informative Work through grief process; feelings Process expectations of self; child; family members Education on special needs; resources Journal Writing Scrapbooking Lists; Letters Connecting with Others Coping Skills

48. Empowering Parents/Caregivers Parents/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

49. “ Dutch Boy” by Anna Perera page 203

50. “ Stuff Happens, people do the best they can, and very often they grow and learn thereby” -Louise Rachel, Mothering

51. Online Resources: Children’s Board/Hillsborough County: www.childrensboard.org Family Network on Disabilities of Florida: www.fndfl.org The IEP Advocate: www. TheIEPadvocate.com Early 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.com Bright Feats: www.tampabrightfeats.com NICHCY-National Dissemination Center for Children w/Disabilities: www.nichcy.org Yes! Of America, Inc.: www.yesunited.org

52. 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

53. http://specialchildren.about.com/od/needinspiration/ig/Notes-of-Encouragement/

54. 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

55. 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