Special Sibs

1. Special Sibs Jackie Mills-Fernald Director of Access Ministry, McLean Bible Church 703-770-2942 | jackie.millsfernald@mcleanbible.org AccessMinistryMBC.org facebook.com/accessministry | twitter.com/accessministry

2. The Upside • Patience • Kindness • Acceptance of difference • Compassion and helpfulness • Empathy for others • Dependability and loyalty standing up for their brother or sister

3. 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 - 7-11 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.

4. 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.

5. 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

6. 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.

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

8. 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

9. 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.

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

11. 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

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

13. 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

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

15. 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

16. 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.

17. 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