The Parenting Spectrum : The Challenges and Gifts of Raising a Child with Autism Spectrum Disorder Sherry Mergner, MSW, LCSW University of North Carolina at Chapel Hill Clinical Assistant Professor/AHEC Liaison, School of Social Work Social Work

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The Parenting Spectrum The Challenges
and Gifts of Raising a Child with Autism Spectrum
DisorderSherry Mergner, MSW, LCSWUniversity of
North Carolina at Chapel HillClinical Assistant
Professor/AHEC Liaison, School of Social
WorkSocial Work Faculty, Leadership Education in
Neurodevelopmental and Related Disabilites (LEND)
Program, Carolina Institute for Developmental
DisabilitiesMother of 15 year old Noah with ASD
and 13 year old Nathansherry.mergner_at_cidd.unc.e
du(919) 962-6463
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What We Were Seeing (Birth 9 months)

• Problems in social communication and interaction
  across contexts
• Aloof manner impairments in facial expression
  and body posture.
• Little or no eye contact.
• Non-responsive to verbal cues acts deaf.

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What We Were Seeing (Birth 9 months)

• Difficulty expressing needs uses gestures
  instead of words.
• Lake of spontaneous seeking to share enjoyment,
  interests or achievements with other people.
• Difficulty mixing with other children prefers to
  be alone lack of social or emotional
  reciprocity.

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What We Were Seeing (Birth 9 months)

• Hyper-or hypo-reactivity to sensory input or
  unusual interest in sensory aspects of
  environment
• Such as sight, hearing, touch, balance, smell,
  taste, reaction to pain.
• Tantrums displayed extreme distress for no
  apparent reason.
• Sleep disturbances needed to by held, rocked
  vigorously, bounced. Easily awakened by sounds.

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What We Were Seeing(9 months)

• Continued Deficits in Social Communication and
  Social Interaction
• Adequate speech (we saw no delays in speech).
• Marked impairment in the ability to initiate or
  sustain a conversation with others.

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What We Were Seeing(9 months)

• Stereotyped and repetitive use of language or
  idiosyncratic language.
• Lack of varied, spontaneous make-believe play or
  social .

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What We Were Seeing(9 months

• Restricted, or repetitive patterns of behavior,
  interests and activities.
• Stereotyped or repetitive speech, motor
  movements, or use of objects
• Excessive adherence to routines, ritualized
  patterns of verbal or nonverbal behavior, or
  excessive resistance to change.
• Highly restricted, fixated interests that are
  abnormal in intensity or focus.
• Continued sensory issues

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Other Signs9 months

• Noticeable physical over activity
• Extreme sensory sensitivity
• Continued sleep disturbance
• Delayed development of fine motor skills

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What We Were Feeling

• Confused
• Questioning ourselves as Parents
• Frustrated/Embarrassed/Isolated/Alone
• Exhausted emotionally and physically
• Angry/Depressed/Afraid
• Trying to be Hopeful

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THE DIAGNOSIS
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What We Were Feeling

• Intuition confirmed Relieved
• Confused and Overwhelmed
• Can we please stay in denial?
• Anger
• Fear What does the future hold?

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What We Were Feeling

• Powerlessness
• Disappointment/Grief
• Guilt
• Depressed/Sadness
• Gradual Acceptance

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THE FIERCE ADVOCATE

• Evaluations
• Treatment
• Medication
• Respite/Support People
• Friends/Social
• Belonging to a Community

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THE IMPACT
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Personal Stress

• No time to/for self
• Emotionally and physically exhausted
• Mixed emotions about child and parenting
• Family of origin issues triggered

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Personal Stress

• Former spiritual concepts challenged
• Grieving
• Rewriting hopes and dreams
• Concerns for future

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Family Stress

• Limitations on where we can go, who we can go
  with and what we can do.
• Extra preparation
• Exit plan
• Employ help

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Marital Stress

• Financial Stress
• Education and Social Negotiations
• No Time/No Energy
• Differing Ideas on Parenting
• Lack of Support
• Isolation from Community

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Sibling 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

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Coming To Acceptance!What to Do and How to Cope?
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• Seek Out Help for Yourself
• Family
• Trusted and knowledgeable professionals
• Other parents who have children with autism
• Talk about your feeling
• Rely on Positive Sources in Your Life

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• Seek Out Help for Your Child
• Begin Early Intervention Treatment Immediately
• Begin Early Education of Peers Immediately
• Keep Daily Routines as Normal as Possible
• Be Consistent
• Reinforce Positive Behavior
• Love Him/Her for Who They Are!

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Things to Remember

• Stay in the Moment
• Remember Time is on Your Side
• Dont Make Any Assumptions
• Dont Take Anything Personally
• Recognize That You Are Not Alone
• Do Not Be Afraid to Show Emotion
• Always Do Your Best

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Managing and Honoring

• Learn the Facts about Autism and
  Intervention/Treatment Modalities
• Learn about the IEP Process/School System
• Learn to Advocate for Your Child Educate Others
  (neighborhood, peers, school, family)

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Managing and Honoring

• Teach Social Thinking and Social Skills
• Guide their interests in ways that will provide
  meaning and purpose to their lives
• Give them permission to be themselves They are
  perfect just the way they are!
• Build Self-Esteem

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THE BENEFITS OF THE JOURNEY
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• Learn how to both give and receive help
• Not Knowing is Not Failure!!
• Find balance in self-care and caring for others
  Theres more to life than autism
• Develop a deeper level of compassion and empathy

The Benefits of the Journey
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• The Benefits of the Journey
• Develop deeper more meaningful relationships
• Increased appreciation for self, child, family
  and professionals
• Deeper Humility
• Become an Advocate!

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• The Benefits of the Journey
• Move past our own comfort zone stretching
  our awareness and perspective
• Deeper trust in Self/Increased Faith
• Shift in priorities
• Rethinking the meaning of love and joy

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• The Benefits of the Journey
• Increased personal knowledge of Divine Love
  and Grace.
• Remember the purpose of this Journey!
• Rethinking it all!!

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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 havean
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

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sherry.mergner_at_cidd.unc.edu919-962-6463