Lydia Abrams, LCSWTIKVAH Special Needs Program Coordinator

Tampa Jewish Family Serviceswww.tjfs.org

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.

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 IndividualEach Parents’ Experience is UniqueSome Families May Have Similarities but None are the Same

“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

“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

“Welcome To Holland” by Emily Perl Kingsley page 216

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

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

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

Feelings of Anger:At themselves

Toward their child/renToward the medical system

Toward their treatment teamToward their religious belief system

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?”

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

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

Fear and Worry:Child’s ProgressChild’s FutureEducational NeedsSocial SkillsAbility to live independently when olderSafety or possible deathOwn Mental HealthStable relationship with partnerNext “crisis”

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

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

“Roller Coaster Ride”Emotional High’s and Low’s

“Just when I think things are improving - something else goes wrong”

Constant state of crisis

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

Role Changes:Parents/Primary Caregivers can unexpectantly

become…NurseResearcherAdvocateCase ManagerTherapistNutritionistEducatorPlaymate…For their childCan forget they are the parent of their child first

“Survival” page 22

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:

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

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

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

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

Practice Forgiveness:Of oneselfOf partnerOf child/renOf doctors and/or other professionalsOf Higher Power

Letting Go:AngerControlResentmentWanting things to changeThinking of how “things should have been”Wishing the child was different

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

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

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

If parent’s emotional needs are met –

then they can better care for their children

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

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

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

“Form a Partnership” page 51

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.”

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

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

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

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

“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”.

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

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

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

“Dutch Boy” by Anna Perera page 203

“Stuff Happens, people do the best they can, and very often they grow and learn thereby”

-Louise Rachel, Mothering

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

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

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 The Elephant in the Playroom by Denise Brodey

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