Successful Strategies for Caregiver Survival Dealing with Autism Spectrum Disorder

Transcription

1 Successful Strategies for Caregiver Survival Dealing with Autism Spectrum Disorder Phyllis J. Mesko, RN, CPN 29 th Annual Pediatric Nursing Conference July 12, 2013 Objectives: Define Pervasive Developmental Disorder/Autism Spectrum Disorders Discuss the 3 main areas of deficit and its impact on caregiver survival Discuss successful strategies and helpful resources the caregiver may use to survive the stress of working with or raising a child with Autism Spectrum Disorder 2 Terms and Definition: In 1980, the DSM-III categorized Pervasive Developmental Disorders (PDD) and Autism Spectrum Disorder (ASD) synonymously as diagnostic categories Both terms refer to neurodevelopmental disorders These result in impairments concerning socialization, communication and behavior Disorders Classified as PDDs or ASDs: Autistic disorder Asperger's disorder Rhett s disorder Childhood Disintegrative Disorder Pervasive Developmental Disorder- Not otherwise specified Autistic Disorder: Delays present before 3 years old, seen more with boys Lack of eye contact, facial expressions, gesturing, age-appropriate friends, imaginative play, peers interests MR common ranging from mild to profound Changes in daily routine increase behavior outbursts, rocking spinning, finger flapping. Communication deficits, non-verbal, lacking receptively, or fluent in speech Asperger s Disorder: Often not recognized until school age, difficulties with peers, more boys, poor coordination, clumsy Not usually socially withdrawn, wants to interact with others, only discussing their own interests Stereotype behavior without language or cognitive delay with occasional MR though not common Considered inappropriate relating to others 6

2 Rhett s Disorder: Almost exclusively females who begin to regress at 5-18 months old Loss of speech with severe expressive and receptive language Loss of hand use. Ataxia progressing to spasticity, scoliosis, and rigidity Loss of social skills Severe or profound MR-cognitive Seizures and sleep problems common Childhood Disintegrative Disorder: Regression begins after 2 years and before 10 years of age Loss of social skills Loss of receptive and expressive language skills Loss of motor skills and bowel and bladder control Severe MR Seizures and EEG abnormalities common 8 Pervasive Developmental Disorder: Not Otherwise Specified Social deficits are primary problem Verbal/nonverbal communication difficulties with abstracts: sarcasm, irony Delays begin within first few years Stereotyped behavior, activities, interests Not defined cognitive delays Do not meet support of diagnostic criteria Symptoms fewer, less severe than other disorders Medical Problems Associated with Autism Impacting Caregivers Care: GI symptoms-dietary Behavioral symptoms: adjustments if needed Obsessive- Dietary restrictions Compulsive Disorder Sleep disturbances ADD with hyperactivity Allergies Anxiety Immunologic Disturbances Epilepsy Three Main Areas of Deficit: Socialization Behavior Communication Area of Deficit: Socialization Process whereby a child learns to get along with and to behave similarly to other people in the group, largely through imitation as well as group pressure Deficits appear in ability to: play with others show interest in their interests use gestures eye contact entertain and be entertained enjoy a party meet people 11

3 Area of Deficit: Communication How we express our wants and needs. May have deficits associated with: inner receptive or expressive language. Methods of Communication: Verbally Digital Camera pictures Stick Figures Magazines and newspapers Sign Language Computer Programs Picture Communication Area of Deficit: Behavior Manner of acting or controlling yourself May be socially appropriate or inappropriate May show signs of aggression Hitting Biting Kicking Screaming Using inappropriate or foul language Possible Causes of Behavior Impacting the Caregiver: Unable to understand what is expected of them. Not familiar with environment Unable to communicate pain, fight or flight Menstrual cramps perceived as aggression and increased behavior Purposeful behavior perceived negatively Difficulties with emotions Separation Anxiety 16 Processing Problems That Make the Caregivers Job Difficult: Visual Most common method of processing information but slower for Autism Spectrum Disorder patients. Picture communication helps Auditory Difficulty processing and understanding the meanings of some words. May take longer to process what is being said. Problems blocking out outside stimulations Sensory May not tolerate hugs, stroking, types of clothing with snaps or labels. Blood Pressure cuffs, pulse oximeters, tape, airway masks are just a few of the instruments used in a medical setting As A Nurse and Mother Of 28-year Old Son With Autism I had to learn first hand the importance of caregiver survival and how it impacts me both professionally, personally and as a family member. 17

4 Strategies for Successful Care and Recommendations for Nurse Caregiver Success Successful Survival Strategies for the Nurse Caregiver: Educating the staff in the care of the patient Team work in caring for the child with Autism Spectrum Disorder Nurse satisfaction of care increases family satisfaction of care Opportunities for my Professional Self-Development: Nurse Scholar Care Ladder Publishing Presentations both oral/poster to share expertise and knowledge Participation on PI,Research and Pain Committee A Strategy to Improve Communication: Find the method of communication that works best in short simple commands without slang or double meaning Explain what is to be done and what behavior is expected of them Address these barriers to decrease anxiety and pain while promoting quality of care and parent and patient satisfaction Encourage Structure and Consistency: A child must continue his normal routine as much as possible, consistency in personnel routine since change is very hard Medications to be given on the same schedule as home with meds given to control behavior and compulsions to be given before surgery and procedures Praise: Extremely important for a job well done High five, food, computer time, TV time. Pat on the back, hug Eye contact with a smile and Good Job! Whatever works for the patient Discuss with family method of positive reinforcement Earning of special toy, DVD, book, magazine 24

5 Mother s of Children with Autism Highly stressed Report fair to poor mental health Found to have a close relationship with their child Maintain good coping skills with parenting Less angry with child's behaviors than their typical child Show remarkable strengths in maintaining stability in the household Warning Signs of Caregiver Stress: Frequent illness Bumping into things Forgetting things Anger, mood swings Dropping things, Weight gain/loss clumsy Neck/back pain, Cranky, withdrawn headaches Losing things, Clutter Overreacting, Accidents, traffic impulsive tickets Changing jobs often Sleep disorders, no Sadness, crying joy Physical Appearance Using alcohol or drugs Relationship issues Family Caregiver Support Parents Experience Living in a World of our Own state: Society lacks understanding of behaviors associated with Autism Missing a normal way of life Feeling disconnected from family and friends Unsupportive system Permanency of the disability disheartening Challenges Parents Face Put Them at Risk for Increased Stress Levels due to: Communication issues Difficult behaviors associated with Autism Social isolation Self-care difficulties Lack of community understanding How Parents Fight and Struggle to Decrease Child and Family Isolation: 1. Vigilant parenting Acting sooner rather than later Doing all you can Listening to your gut feeling 29 30

6 How Parents Fight and Struggle to Decrease Family and Child Isolation: 2. Sustain Self and Family Work toward a healthy balance of therapies and fun Cheer and cherish different milestones Let go of the things that can not be changed How Parents Fight and Struggle to Decrease Child and Family Isolation: 3. Fighting all the way Becoming more direct Learning all you can Educating others Family Involvement as the Caregiver: A vital support system for child and nurse providing a wealth of knowledge for what works best and triggers of negative behavior Present during procedures to decrease anxiety and provide comfort Coordinate team meetings with family for input Sibling and grandparent involvement Provisions in place for surviving hospitalization Families Need to Vent for Survival: Families live in a world of constant stress, anger, always planning next move What works one day may not work the next Uncertainty in their child s future Fear during any hospitalizations that there is still another problem to face Constantly advocating for their child Mourns loss of a normal child No way to prepare for devastation and loss after a diagnosis of Autism. Strain felt similar to pain felt in a emergency or trauma Activities fun for typical child not for atypical 33 Fears of Siblings: Afraid to catch Autism, but protective with peers, while fearing future care of sibling More responsibility at a younger age often the Caregiver Unable to attend events due to siblings behaviors Embarrassed with peers, feelings of guilt they are normal -selective of friends and mates Deep sense of loss as an adult due to lack of intimacy, support, help with aging parents with self. Misses normal sibling relationship 35 Mark & His Sisters 36

7 Survival Strategies for Siblings: Parents must find time for typical child to share their life Monitor amount of time sibling is Caregiver Time utilized when typical peer is socializing with friends minus the sibling with special needs Sibling given a chance to vent without consequences All children regardless of need, given a chance for pursuing their own hopes and dreams regardless of family responsibilities Successful Survival Strategies for the Family Caregiver: Physical outlets Exercise, Walking, Biking Working Emotional care Meditation, Yoga, Mental Health Days Personal Care Manicure/pedicure/massage/facial, etc. Spiritual Care Church involvement, spiritual advisor, prayer Successful Survival Strategies: Family Involvement and help Errands, transportation to appointments, babysitting Mindless activities Soap operas, Game Shows, Reality TV Social Networking Shopping, movies, out to eat, date night Hobbies Reading Photography Casino Travel-The Beach!!! 39 Successful Survival Strategies: School involvement IEP data collection, assessments, therapies Summer Programs Local Developmental Disability Agency involvement Funding Respite Care Plans for the Future IO/Residential Waiver Lists Counseling Family, couple, single 40 Transitioning to Adulthood and its Effects on the Caregiver Roadblocks Transitioning to Adulthood: Transition major challenge for young adult, family and society Each disorder under ASD have unique characteristics and needs for success Lack of support and services needed for most that were available as a child, are no longer resulting in increased frustration and behaviors returning Society expects typical behavior from an adult not possible with Autism. Structure and Consistency in school setting not found in work sites 41 42

8 Strategies for Success Impacting the Caregiver: Supports available to young adult utilized in work site, college or workshop for funding of services. Continued reassessment of needs Extensive planning for transitioning to live outside of family home. Major life change Continued support with communication, socialization and behavior management Job Coach training with team effort for success Consistency and structure maintained Get A Dog or Cat: Spyder Bella Roxie Happiness is.. About 50% of one s happiness seems to be based on genetics. In other words, you are probably born with a happiness set point, which you tend to return to regardless of your current circumstances. About 10% of your happiness is based on your present circumstances. The remaining 40% comes from intentional activitiesthat is, what you do to make a difference in your own life. My Strategies for Caregiver Survival Taken from: Akron Children s Helping Hands Summer, Caregiver Survey: Please fill out caregiver survey to share during question and answer time Questions? Questions 47 48

9 Thank You!!! Contact information: Phyllis J. Mesko RN, CPN ~~~~~ Feel free to contact me at: 50

10 Identify your methods of coping either personally or professionally as a Caregiver Emotionally: Psychologically: Physically: Spiritually: Things I am thankful for: Things that need to be changed: Things that make me happy: Things that make me sad: