1. 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 Faculty, Leadership Education in Neurodevelopmental and Related Disabilites (LEND) Program, Carolina Institute for Developmental Disabilities Mother of 15 year old Noah with ASD and 13 year old Nathan sherry.mergner@cidd.unc.edu (919) 962-6463

2. What We Were Seeing (Birth – 9 months) 1. Problems in social communication and interaction across contexts Aloof manner – impairments in facial expression and body posture. Aloof manner – impairments in facial 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.

3. What We Were Seeing (Birth – 9 months) Difficulty expressing needs; uses gestures instead of words. Difficulty expressing needs; uses gestures instead of words. Lake of spontaneous seeking to share enjoyment, interests or achievements with other people. 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. Difficulty mixing with other children; prefers to be alone – lack of social or emotional reciprocity.

4. What We Were Seeing (Birth – 9 months) 2. 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. Such as sight, hearing, touch, balance, smell, taste, reaction to pain. Tantrums; displayed extreme distress for no apparent reason. Tantrums; displayed extreme distress for no apparent reason. Sleep disturbances – needed to by held, rocked vigorously, bounced. Easily awakened by sounds. Sleep disturbances – needed to by held, rocked vigorously, bounced. Easily awakened by sounds.

5. What We Were Seeing (9+ months) 1. Continued Deficits in Social Communication and 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 sustain a conversation with others. Marked impairment in the ability to initiate or sustain a conversation with others.

6. What We Were Seeing (9+ months) Stereotyped and repetitive use of language or idiosyncratic language. Stereotyped and repetitive use of language or idiosyncratic language. Lack of varied, spontaneous make-believe play or social. Lack of varied, spontaneous make-believe play or social.

7. What We Were Seeing (9+ months 2. Restricted, or repetitive patterns of behavior, interests and activities. Stereotyped or repetitive speech, motor movements, or use of objects 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. 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. Highly restricted, fixated interests that are abnormal in intensity or focus. Continued sensory issues Continued sensory issues

8. Other Signs 9 months + Noticeable physical over activity Noticeable physical over activity Extreme sensory sensitivity Extreme sensory sensitivity Continued sleep disturbance Continued sleep disturbance Delayed development of fine motor skills Delayed development of fine motor skills

9. What We Were Feeling Confused Confused Questioning ourselves as Parents Questioning ourselves as Parents Frustrated/Embarrassed/Isolated/Alone Frustrated/Embarrassed/Isolated/Alone Exhausted – emotionally and physically Exhausted – emotionally and physically Angry/Depressed/Afraid Angry/Depressed/Afraid Trying to be Hopeful Trying to be Hopeful

10. THE DIAGNOSIS

11. What We Were Feeling Intuition confirmed – Relieved Intuition confirmed – Relieved Confused and Overwhelmed Confused and Overwhelmed Can we please stay in denial? Can we please stay in denial? Anger Anger Fear – “What does the future hold? Fear – “What does the future hold?

12. What We Were Feeling Powerlessness Powerlessness Disappointment/Grief Disappointment/Grief Guilt Guilt Depressed/Sadness Depressed/Sadness Gradual Acceptance Gradual Acceptance

13. THE FIERCE ADVOCATE EvaluationsTreatmentMedication Respite/Support People Friends/Social Belonging to a Community

14. THE IMPACT

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

16. Personal Stress  Former spiritual concepts challenged  Grieving  Rewriting hopes and dreams  Concerns for future

17. Family Stress  Limitations on where we can go, who we can go with and what we can do.  Extra preparation  Exit plan  Employ help

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

19. 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

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

21. Seek Out Help for Yourself & Family Trusted and knowledgeable professionals Trusted and knowledgeable professionals Other parents who have children with autism Other parents who have children with autism Talk about your feeling Talk about your feeling Rely on Positive Sources in Your Life Rely on Positive Sources in Your Life

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

23. Things to Remember Stay in the Moment Stay in the Moment Remember Time is on Your Side Remember Time is on Your Side Don’t Make Any Assumptions Don’t Make Any Assumptions Don’t Take Anything Personally Don’t Take Anything Personally Recognize That You Are Not Alone Recognize That You Are Not Alone Do Not Be Afraid to Show Emotion Do Not Be Afraid to Show Emotion Always Do Your Best Always Do Your Best

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

25. 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

26. THE BENEFITS OF THE JOURNEY

27. Learn how to both give and receive help Learn how to both give and receive help “Not Knowing is Not Failure!!” Find balance in self-care and caring for others “There’s more to life than autism” Find balance in self-care and caring for others “There’s more to life than autism” Develop a deeper level of compassion and empathy Develop a deeper level of compassion and empathy The Benefits of the Journey

28. Develop deeper & more meaningful relationships Develop deeper & more meaningful relationships Increased appreciation for self, child, family and professionals Increased appreciation for self, child, family and professionals Deeper Humility Deeper Humility Become an Advocate! Become an Advocate!

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

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

31. “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

32. sherry.mergner@cidd.unc.edu 919-962-6463 sherry.mergner@cidd.unc.edu 919-962-6463 sherry.mergner@cidd.unc.edu