Special Sibs Jackie Mills-Fernald Director of Access Ministry, McLean Bible Church | AccessMinistryMBC.org facebook.com/accessministry | twitter.com/accessministry

The Upside 1.Patience 2.Kindness 3.Acceptance of difference 4.Compassion and helpfulness 5.Empathy for others 6.Dependability and loyalty standing up for their brother or sister

How do you explain disability to a child? Understanding children’s development of concepts (Piaget) – Pre-operational - Until about the age of 7. Ideas are formulated based on limited life experiences. – Concrete years of age; concepts grow out of direct experiences but are now aligned with logical thinking. – Formal Operational - Age 12 or so; engage in abstract reasoning.

Children’s understanding, or lack of understanding, very much ties in with developmental stage and age. Very young children believe their brother’s or sister’s autism is contagious or could happen to them. Young children know the word “autism” early on but do not understand what it means. Children need an explanation at their level; as they grow, more information should be provided. Lifelong need for information.

Questions Allow all questions to be asked; encourage them. Provide child with neutral, non judgmental responses. Allow for open conversation. Keep explanations simple. – 4-5 – Ask questions – 7 and older – Because

Importance of Information Siblings generally lack knowledge or are partially informed about disabilities. They have limited life experiences from which to make sense of it. Information should be shared by more than parents (helping professionals and educators). Information puts fear/anxiety into perspective.

Dealing with Emotions - Acknowledgment Fear Anger Jealousy Embarrassment Loss Isolation Guilt

Red Flags Changes in eating or sleeping Physical symptoms (headaches or stomachaches) Hopelessness Perfectionism Poor concentration Poor self-esteem Talk of hurting themselves Frequent crying or worrying Withdrawal

Ongoing Open Lines of Communication - Removal of Barriers Parents’ emotions - What to share, what not – The right place – Share feelings, but reassure love for child with disability. – Acceptance of child’s feelings – Set up regular family meetings.

Family Activities Entire family or not? One-on-one time Private space

Be a Role Model Self-care Physical and emotional health Invest in other relationships (marriage and family mentors) Strive for a balance in the season you are in

Other Equipping Skills Teach play skills by modeling Communication modes Schedule play time with siblings

Things to Watch Allow typical siblings to have a life outside of family Watch childcare role - As a family member, each has responsibilities, but siblings are not the main caregivers. Sibs should not be put in situation where they discipline. Protection of space and belongings

Adult Siblings Long-term care questions and responsibilities Legal and financial concerns What is the plan once parents are gone?

Creation of Sibling Programs Connect with peers Share related emotions Understand family dynamics Learn how to interact with siblings Build self-esteem and coping strategies

Sibling Suggestions (Powell and Ugle, 1984) Be open and honest. Limit caregiving responsibilities of sibling. Use respite. Schedule special time. Let siblings settle their own differences. Welcome other children and friends into the home. Praise all siblings. Listen to siblings. Recognize each child’s unique qualities and family contributions. Recognize sibling’s peak stress time, and plan to minimize negative effects. Use professionals to help siblings when needed. Teach siblings to be independent. Have the child with disability be as independent as possible.

Resources “Siblings of Children with Autism”, Harris and Glasberg “Special Siblings”, Mary McHugh “My Brother Kevin Has Autism”, Richard Carlson “We’ll Paint the Octopus Red”, Stephanie Stuve-Bodeen “Being the Other One – Growing Up with A Brother or Sister Who Has Special Needs”, Kate Strohm “French Fries”, Lilli Z. Mayerson “Living with A Brother or Sister with Special Needs – A Book for Sibs”, Donald Meyer and Patricia Vadasy “The Sibling Slam Book – What It’s Really Like to Have A Brother or Sister with Special Needs”, Don Meyer “Rules”, Cynthia Lord “Leo the Late Bloomer”, Robert Kraus “I’m Mad – Dealing with Feelings”, Elizabeth Cray SpecialSibs.org SiblingSupport.org