Understanding, Supporting & Empowering Siblings of Individuals with Angelman Syndrome
Presentations at the 1st World Conference IASO - Tampere, Finland, 4-8 July, 2000
Presented by: Julie Hyman, M.S.W. - AngelmanSyndrome@earthlink.net
Two Guiding Principals;
1. The Special Concerns and Unique Needs of Siblings are Universal
Siblings, regardless of the type of disability their brother or sister has, share similar experiences, have similar needs and tend to emphasize the same feelings and concerns.
2. Each Sibling is a Unique Individual
Although siblings have similar concerns, needs and experiences, the intensity and chronicity will vary from sibling to sibling. Since each sibling is a member of a unique family system, every sibling experiences life differently and must be respected as an individual.
The Role of Sibling Relationships in Human Development:
1. Psychological and Emotional Development:
The sibling relationship is often the first peer relationship a child experiences.
Sibling relationships allow children to gain experience in conflict resolution, competition and nurturing
2. Development of Relationships with Others:
Early sibling relationships lay the foundation for relationships with people outside the home.
3. Teaching and Learning
Siblings serve as counselors, mentors and confidants to one another.
Siblings experience bonding through the sharing of "generation specific" information.
Siblings can continue to support each other throughout their lifespan.
A Lifelong Relationship:
1. Early Childhood
Siblings provide a constant source of companionship for one another.
2. School Years
As they begin to establish new relationships outside the home, siblings put into use the social skills they have learned from one another.
3. Adolescence
Siblings appear ambivalent or resentful towards each other, yet rely on each other for support on issues surrounding friendship, peer pressure, sexuality, etc.
4. Adulthood
Sibling relationships take on new characteristics
As siblings begin their own families they can provide an extended family support network.
5. Old Age
The sibling relationship is typically the longest lasting relationship in the family.
Siblings provide companionship to each other in the final stages of life.
Opportunities and Benefits for Siblings:
Maturity
Self-Confidence
Insight
Appreciation for their Sibling's and their Own Abilities
Tolerance
Pride
Opportunities to Develop Advocacy Skills
Common Concerns of Siblings
The Child with a Disability
Their Parents
Themselves
Their Friends
Their Community and School
Adulthood
Concerns About the Child with a Disability
Cause of the Disability
The Child's Feelings
Prognosis
Needed Services
How to Help
Where the Child Lives
The Future
Concerns About Their Parents
Parental Expectations
Communicating with their Parents
Their Parents' Feelings
Their Parents' Time
Helping their Parents
Participation in Child Rearing
Concerns About Themselves
Their Feelings
Their Health
Their Relationship with their Sibling
Concerns About Their Friends
Informing their Friends
Teasing
Their Friends' Acceptance of their Sibling
Dating
Concerns About the Community
School
Community Acceptance
Community Participation
Community Living
Concerns About Adulthood
Guardianship & Financial Responsibility
Their Own Family
Continuing Involvement
Availability of Needed Services
How to Help
Where their Sibling Will Live
Making the Most of Community - Strategies, Services and Supports
1. Provide Siblings with Age Appropriate Information
Like their parents, siblings have a lifelong and ever changing need for information.
Parents, Service Providers and Educators should proactively provide siblings with age appropriate information on an ongoing basis.
2. Provide Opportunities to Meet Other Siblings
For parents, "going it alone" is unthinkable, yet this routinely happens to siblings. Groups such as "SibShops" or listservs such as "SibNet" or SibKids" offer siblings the same type of support parents routinely benefit from.
3. Encourage Good Communication with Siblings
Good communication is an essential learned skill
Communication does not have to be burdensome of "formal"; Utilize fun, age appropriate, interactive activities such as "Aunt Blabby", the "Snip" Profile and the "Halo Club".
Look for indirect communication from siblings; look at drawings, stories, and fantasy play for cues.
4. Encourage and Make Use of Set-Aside Time
Children need to know parents value and care about them as individuals.
Weekly dinners and activities with siblings sends the message that parents are available to support siblings and are interested in their activities, problems and accomplishments.
5. Educate Service Providers and Teachers About the Needs and Experiences of Siblings
Just as parents educate others about their Angelman child, the same must be done regarding the special needs of their typically developing children.
6. Planning and Discussion of the Future
Siblings often begin to worry early in life about obligations they will have in the future; Discuss and share plans for the future with siblings.
Give siblings permission to pursue their own dreams and plans.
Assure siblings that future involvement in the life of their sibling will be a choice not an obligation or expectation.
For Further Information:
Please address any questions about this presentation to Julie Hyman at: AngelmanSyndrome@earthlink.net
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