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MINDFUL PARENTING Invisible Disabilities and Parenting Common Invisible Disabilities In Children • Autism Spectrum Disorder • Attention Deficit Hyperactivity Disorder In Adults • Chronic Illness (i.e. fibromyalgia, diabetes, cancer) • Mental Illness • Learning Disabilities • Post-Traumatic Stress Disorder • Sensory Processing Disorders • Traumatic Brain Injury • Mental Illness • Chronic Pain But you LOOK good! People often judge others by what they see and often conclude a person can or cannot do something by the way they look. When outsiders can’t see symptoms, they may believe the symptoms aren't real or are exaggerated. WELCOME TO HOLLAND Welcome to Holland Questions for Discussion: 1. What did listening to “Welcome to Holland” bring up for you? 2. How has the presence of invisible disabilities changed how you thought parenting would be? 3. What are some pleasant surprises that result from the presence of invisible disability in the family? HOW DISABILITIES EFFECT FAMILIES Parents of Children with Disabilities • Chronic sadness/grief/sense of loss that ebbs and crests • The challenges of parenting cause parents to neglect their own wellbeing • Running out of physical and psychological energy • Finding adequate child care for children with special needs • Managing complex medical and developmental demands (for example, doctor appointments, therapies, treatments • Developing and managing special education plans for child • Giving enough time and attention to manage other relationships, including spouse/partner, other children, friendships • Feeling misunderstood/judged by professionals, teachers, friends and family members • Confusion about how much to expect/push achievement for child • Sorting out developmental and parenting issues from issues related to disability When Parent Has A Disability • Children may become isolated/excluded: (“don’t want to worry them;” “web of silence”) • When parents are upset and irritable themselves, they can find it difficult to be patient • Difficulty putting information about parent’s disability into language that children can understand, and is not alarming to children • Potential for less interactions among family members • Children may be jealous because they feel deprived of parental time and attention • Children may become caretakers of parent and/or siblings • ‘Protecting’ child and concealing severity of condition can intensify feelings of loneliness and anxiety Child With Disability • Child may feel isolated, different, impacts self-esteem • Struggles making friendships • School difficulties • Difficulty meeting expectations of home life, including completing chores, following rules, maintaining relationships • Child’s ability to cope waxes and wanes, which others may read as lack of effort • Children may lack understanding of their own disability and how to manage it • Increased stress level with less ability to cope with stress • Physical and psychological demands of coping with disability can be exhausting Siblings of Children with Disabilities • • • • • • • • • Being left to care for self while family is focused on child with disability Feeling anxious about sibling Isolation from family and peers because attention is focused on child with disability Feelings of inferiority (perceives parents as caring more about child with disability) Lack of information Adjustment/behavior problems Feelings of envy, anger, and guilt Becoming more preoccupied with their own health May experience health changes such as sleep disturbance, enuresis, appetite problems, headaches, stomach pain STRATEGIES FOR FAMILIES WITH DISABILITIES Child With Disability • Make sure child understands their disability in a developmentally appropriate way • Emphasize the value of diversity, how everyone has strengths and weaknesses, being strengths focused • Create an “island of competence” for your child. Find an area where they shine and make that a family priority • Assist child in making friendships via play dates, social skills training, even finding an older child or adult to befriend child • Seek out other children with similar disabilities for child to interact with. Making friends with the parents of these kids is a bonus! • Gear family expectations to maximize child’s strengths. For example, if carrying heavy things is calming for child, s/he can carry laundry, trash, move furniture, etc. • Teach child personalized self-regulation and calming strategies • Help child learn to monitor their energy and ability level and plan accordingly Parents Of Children With Disabilities • Accept grief and loss, don’t deny it • Prioritize self-care • Monitor physical and psychological well-being and adjust schedule accordingly • Talk with child care provider about possible child care issues and make sure they will support your child’s special needs • Have back-up childcare plans (Plan B, Plan C, Plan D) • Organize, prioritize and schedule treatment for child. May mean delaying some treatment • Use special education advocate and set up ongoing communication plan with school • Build in dedicated time for relationships that support caregiver • Seek out other parents of children with similar disabilities (online is good source) • Research current information about your child’s disability Parent With Disability • Communicate openly with child in a developmentally appropriate manner about disability • Accept limitations of disability and accommodate/modify schedule, tasks, expectations to fit abilities • Seek out support and accept offers of help • Provide quality time for each child every day, even if it’s just a few minutes. Set up routines and rituals that support your relationships • Allow children to help in a developmentally appropriate way • Be honest with children about the severity of your condition, listening and watching for their anxieties and feelings • Self care is extremely important and family life should be structured to allow for selfcare Sibling Of Child With Disability • Communicate about the disability with the sibling on a developmentally appropriate level • Set aside specific quality time for sibling • Divide and conquer: if 2 parent family, one parent take each child for special attention time • See somatic symptoms as unexplored feelings, explore feelings with child in a non-judging and accepting manner • Acknowledge and appreciate the sacrifices the sibling has to make • Express love and appreciation for sibling • Have family meetings to discuss, plan and set priorities, letting everyone have a say in what family prioritizes • Make sure child knows illness/disability is not contagious and not caused by anything they did • Reassure child of their importance in the family • This child needs an “island of competence”, too MINDFULNESS AND DISABILITIES Mindful parenting strategies • Model acceptance of diversity and individual differences for your children • Communicate openly within the family about the disability • Use family meetings to adjust/modify family norms and expectations effected by the disability • Focus on building a support base for the family • Decide as a family (in a developmentally appropriate manner) what to prioritize (sports and lessons vs. home-cooked meals, TV vs. quality times) • Self-care for parents built into lifestyle • Avoid comparing siblings or typically vs. non-typically developing children Coping Strategies Problem Focused Coping • Targets the causes of stress in practical ways in order to tackles the problem or situation causing stress. Problem focused strategies • Aim to remove or reduce the cause of the stressor • Examples: Routines, Problem-solving, Time-management Emotion Focused Coping: • techniques focus on changing one's emotional reaction to a stressful or upsetting situation Mindful strategies are emotion-focused and aim to increase self-regulation by encouraging being present in the moment by engaging in calming activities Teach children to identify their personal warning signs and triggers: • • • What body signals do they feel? (i.e. racing heart, tears, stomachache) What words or phrases do they think? (i.e. No Fair! You cheated!) What is their body telling them to do? (i.e. scream, push) Encourage self-regulation and self-control through sensory strategies and experiences • • • Create a ‘Calm Down’ kit for each child Establish choices that are always OK for children to self-initiate when they need to calm down (i.e. wrap up in a blanket, swings, take a shower) If space allows, create a low stimulation space in your home The Spoons Theory https://youtu.be/7Dt7QgfQYOE Questions for Discussion 1. What are some ways you could respond to this scenario using the 7 Attitudes of Mindfulness? • • • • • • • Non-judging Patience Beginner’s Mind Trust Non-Striving Acceptance Letting Go 2. What are some ways you could respond to this scenario using the P.A.C.E Parenting Method? • Playfulness • Acceptance • Curiosity • Empathy Wellness HOMEWORK