The Parenting Spectrum : The The Parenting Spectrum : The Challenges and Gifts of Raising a Challenges and Gifts of Raising a

Child with Autism Spectrum DisorderChild with Autism Spectrum Disorder

Sherry Mergner, MSW, LCSWSherry Mergner, MSW, LCSWUniversity of North Carolina at Chapel HillUniversity of North Carolina at Chapel Hill

Clinical Assistant Professor/AHEC Liaison, School of Social WorkClinical Assistant Professor/AHEC Liaison, School of Social WorkSocial Work Faculty, Leadership Education in Neurodevelopmental Social Work Faculty, Leadership Education in Neurodevelopmental

and Related Disabilites (LEND) Program, Carolina Institute for and Related Disabilites (LEND) Program, Carolina Institute for Developmental DisabilitiesDevelopmental Disabilities

Mother of 15 year old Noah with ASD and 13 year old NathanMother of 15 year old Noah with ASD and 13 year old Nathan

sherry.mergner@cidd.unc.edusherry.mergner@cidd.unc.edu(919) 962-6463(919) 962-6463

What We Were Seeing What We Were Seeing (Birth – 9 months)(Birth – 9 months)

1.1. Problems in social communication Problems in social communication and interaction across contexts and interaction across contexts

Aloof manner – impairments in facial Aloof manner – impairments in facial expression and body posture.expression and body posture.

Little or no eye contact.Little or no eye contact.

Non-responsive to verbal cues; acts deaf.Non-responsive to verbal cues; acts deaf.

What We Were Seeing What We Were Seeing (Birth – 9 months)(Birth – 9 months)

Difficulty expressing needs; uses Difficulty expressing needs; uses gestures instead of words.gestures instead of words.

Lake of spontaneous seeking to share Lake of spontaneous seeking to share enjoyment, interests or achievements enjoyment, interests or achievements with other people. with other people.

Difficulty mixing with other children; Difficulty mixing with other children; prefers to be alone – lack of social or prefers to be alone – lack of social or emotional reciprocity. emotional reciprocity.

What We Were Seeing What We Were Seeing (Birth – 9 months)(Birth – 9 months)

2.2. Hyper-or hypo-reactivity to sensory input or Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of unusual interest in sensory aspects of environmentenvironment

Such as sight, hearing, touch, balance, smell, taste, Such as sight, hearing, touch, balance, smell, taste, reaction to pain.reaction to pain.

Tantrums; displayed extreme distress for no Tantrums; displayed extreme distress for no apparent reason.apparent reason.

Sleep disturbances – needed to by held, rocked Sleep disturbances – needed to by held, rocked vigorously, bounced. Easily awakened by sounds. vigorously, bounced. Easily awakened by sounds.

What We Were SeeingWhat We Were Seeing(9+ months)(9+ months)

1.1. Continued Deficits in Social Communication Continued Deficits in Social Communication and Social Interactionand Social Interaction

Adequate speech (we saw no delays in speech).Adequate speech (we saw no delays in speech).

Marked impairment in the ability to initiate or Marked impairment in the ability to initiate or sustain a conversation with others.sustain a conversation with others.

What We Were SeeingWhat We Were Seeing(9+ months)(9+ months)

Stereotyped and repetitive use of language or Stereotyped and repetitive use of language or idiosyncratic language.idiosyncratic language.

Lack of varied, spontaneous make-believe play Lack of varied, spontaneous make-believe play or social or social ..

What We Were SeeingWhat We Were Seeing(9+ months(9+ months

2.2. Restricted, or repetitive patterns of Restricted, or repetitive patterns of behavior, interests and activities.behavior, interests and activities.

Stereotyped or repetitive speech, motor movements, or Stereotyped or repetitive speech, motor movements, or use of objectsuse of objects

Excessive adherence to routines, ritualized patterns of Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to verbal or nonverbal behavior, or excessive resistance to change.change.

Highly restricted, fixated interests that are abnormal in Highly restricted, fixated interests that are abnormal in intensity or focus.intensity or focus.

Continued sensory issues Continued sensory issues

Other SignsOther Signs9 months +9 months +

Noticeable physical over activityNoticeable physical over activity

Extreme sensory sensitivityExtreme sensory sensitivity

Continued sleep disturbanceContinued sleep disturbance

Delayed development of fine motor Delayed development of fine motor skillsskills

What We Were FeelingWhat We Were Feeling ConfusedConfused

Questioning ourselves as ParentsQuestioning ourselves as Parents

Frustrated/Embarrassed/Isolated/AloneFrustrated/Embarrassed/Isolated/Alone

Exhausted – emotionally and physicallyExhausted – emotionally and physically

Angry/Depressed/AfraidAngry/Depressed/Afraid

Trying to be HopefulTrying to be Hopeful

THE DIAGNOSIS

What We Were FeelingWhat We Were Feeling Intuition confirmed – RelievedIntuition confirmed – Relieved

Confused and OverwhelmedConfused and Overwhelmed

Can we please stay in denial? Can we please stay in denial?

AngerAnger

Fear – “What does the future hold?Fear – “What does the future hold?

What We Were FeelingWhat We Were Feeling PowerlessnessPowerlessness

Disappointment/GriefDisappointment/Grief

Guilt Guilt

Depressed/Sadness Depressed/Sadness

Gradual AcceptanceGradual Acceptance

THE FIERCE ADVOCATETHE FIERCE ADVOCATE

EvaluationsEvaluations

TreatmentTreatment

MedicationMedication

Respite/Support PeopleRespite/Support People

Friends/SocialFriends/Social

Belonging to a CommunityBelonging to a Community

THE IMPACTTHE IMPACT

Personal StressPersonal Stress No time to/for self No time to/for self

Emotionally and physically Emotionally and physically exhaustedexhausted

Mixed emotions about child and Mixed emotions about child and parentingparenting

Family of origin issues triggeredFamily of origin issues triggered

Personal StressPersonal Stress

Former spiritual concepts challenged

Grieving

Rewriting hopes and dreams

Concerns for future

Family StressFamily Stress

Limitations on where we can go, who we can go with and what we can do.

Extra preparation

Exit plan

Employ help

Marital StressMarital Stress

Financial StressEducation and Social NegotiationsNo Time/No EnergyDiffering Ideas on ParentingLack of SupportIsolation from Community

Sibling StressSibling Stress

Communication and play differences

Jealousy and rivalry for parents attention

Target of aggression

Trying to make up for deficits

Concern for parents’ stress and grief

Coming To Acceptance!Coming To Acceptance!What to Do and How to Cope?What to Do and How to Cope?

Seek Out Help for Yourself Seek Out Help for Yourself

& Family& Family

Trusted and knowledgeable professionalsTrusted and knowledgeable professionals

Other parents who have children with autismOther parents who have children with autism

Talk about your feelingTalk about your feeling

Rely on Positive Sources in Your LifeRely on Positive Sources in Your Life

Seek Out Help for Your Child Seek Out Help for Your Child

Begin Early Intervention & Treatment Begin Early Intervention & Treatment ImmediatelyImmediately

Begin Early Education of Peers ImmediatelyBegin Early Education of Peers Immediately

Keep Daily Routines as Normal as PossibleKeep Daily Routines as Normal as Possible

Be ConsistentBe Consistent

Reinforce Positive BehaviorReinforce Positive Behavior

Love Him/Her for Who They Are!Love Him/Her for Who They Are!

Things to RememberThings to Remember

Stay in the MomentStay in the Moment Remember Time is on Your SideRemember Time is on Your Side Don’t Make Any AssumptionsDon’t Make Any Assumptions Don’t Take Anything PersonallyDon’t Take Anything Personally Recognize That You Are Not AloneRecognize That You Are Not Alone Do Not Be Afraid to Show EmotionDo Not Be Afraid to Show Emotion Always Do Your BestAlways Do Your Best

Managing and HonoringManaging and Honoring Learn the Facts about Autism and Learn the Facts about Autism and

Intervention/Treatment ModalitiesIntervention/Treatment Modalities

Learn about the IEP Process/School Learn about the IEP Process/School SystemSystem

Learn to Advocate for Your Child – Learn to Advocate for Your Child – Educate Others (neighborhood, peers, Educate Others (neighborhood, peers, school, family)school, family)

Managing and HonoringManaging and Honoring

Teach Social Thinking and Social SkillsTeach Social Thinking and Social Skills

Guide their interests in ways that will Guide their interests in ways that will provide meaning and purpose to their livesprovide meaning and purpose to their lives

Give them permission to be themselves Give them permission to be themselves They are perfect just the way they are!They are perfect just the way they are!

Build Self-EsteemBuild Self-Esteem

THE BENEFITS OF THE THE BENEFITS OF THE JOURNEYJOURNEY

Learn how to both give and receive helpLearn how to both give and receive help

““Not Knowing is Not Failure!!”Not Knowing is Not Failure!!”

Find balance in self-care and caring for Find balance in self-care and caring for others others “There’s more to life than autism”“There’s more to life than autism”

Develop a deeper level of compassion Develop a deeper level of compassion and and empathyempathy

The Benefits of the Journey

The Benefits of the JourneyThe Benefits of the Journey

Develop deeper & more meaningful Develop deeper & more meaningful relationshipsrelationships

Increased appreciation for self, child, Increased appreciation for self, child, family and professionalsfamily and professionals

Deeper HumilityDeeper Humility

Become an Advocate!Become an Advocate!

The Benefits of the JourneyThe Benefits of the Journey

Move past our own “comfort zone” – Move past our own “comfort zone” – stretching our awareness and stretching our awareness and

perspective perspective

Deeper trust in Self/Deeper trust in Self/Increased FaithIncreased Faith

Shift in prioritiesShift in priorities

Rethinking the meaning of love and joyRethinking the meaning of love and joy

The Benefits of the Journey

Increased personal knowledge of “Divine Love” and Grace.

Remember the purpose of this Journey!

Rethinking it all!!

“Nobody signs up to have a child with special needs.

Then you realize that this is a gift, this child is the light.

And if you can nourish that light and let it shine, you have

an opportunity to get closer to God, and that is Grace.”

-John C. McGinley, actor and costar of the TV show Scrubs, on his son, Max, who has Down syndrome

sherry.mergner@cidd.unc.edu919-962-6463 919-962-6463