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 tocause 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 specialneeds 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 ProgressChild’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

SpecializedEquipments

Case Worker

SpecializedPhysician(s)

Primary Pediatrian

Spouse

Other Children

Child/renWith

Special Needs

Parents/Primary

Caregivers

Gaining Acceptance/Coping SkillsBuild 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 focus 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 GoSome 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

familiesHigher 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