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Debbie Lillo, Joni and Friends

Photo courtesy of Debbie Lillo, Joni and Friends

 

Part III in the Four-Part Sibling Panel series

In the first post, we shared our adult Sib Panel’s personal insights at growing up with a special needs sibling.  Earnestly and honestly, they shared their struggles as well as blessings gained.

In the second post, we highlighted practical recommendations how parents and families can help support Sibs.

In this third post, we share research and link to a detailed Resource List that families and churches can use to optimally embrace and support special needs siblings.

 

Debbie Lillo – Joni and Friends

Debbie serves as the Church Relations Manager for the San Francisco Bay Area office of Joni and Friends.  Her role is to support families affected by disability, and to encourage and equip churches to intentionally welcome and disciple families affected by disabilities.   Additionally, she leads the special needs ministry, Bridge Builders, at Saratoga Federated Church.

Through her work with the churches, JAF Family Retreats and respite events, Debbie has developed a strong heart for special needs siblings.  She has done extensive research on the ways siblings might be affected by their brother or sister with disabilities, and designs programs to support those siblings in the church.

Before Debbie introduced the Sib Panel, she provided a summary of the Sib workshop she presents annually at BASS and at the Joni and Friends Disability Summit.  For our last post, Debbie has graciously agreed to share her presentation notes, below:

 

Embracing Siblings of Children Affected By Disability

 

God’s Call – A Biblical Perspective

Understanding Families in Crisis

  • 85% of marriages affected by severe disability may end in divorce.
  • 10-15% of families affected by disability are actively involved in church (10-15% of churches have some form of special needs ministry)
  • Families affected by disability are uniquely stressed and overwhelmed:  Exhaustion, isolation, grief, faith crisis, marital stress, etc.

A Sibling’s Response to Disability Often Reflects the Parental Response

  • A sibling’s grief often mirrors that of his/her parents
  • The sibling’s reaction often reflects family dynamics
  • The sibling is often the only person who spends as much time with the child with special needs as the parent(s)

Parenting a Family Affected by Disability

  • Time-Consuming Challenges
  • Altered Expectations:  Dashed Expectations (grief)

Understanding the Grief Process

  • Loss of an expectation results in a true grief process
  • Stages of grief do not necessarily go in traditional order and can re-occur throughout a lifetime
  • Each family member will respond to grief uniquely
  • Stressed couples don’t generally have the time or emotional energy to work on their differences

 

Potential Sib Issues and Struggles

 

Anger or Resentment

  • Frustration because anger is difficult to express appropriately
  • Frustration because there is nowhere to direct anger when it comes
  • Feeling it is somehow shameful to have a family affected by disability
  • Sources of Anger
    • At sibling for being the way they are
    • At the community for staring and not understanding
    • At parents for not having time to give needed attention

Fear and Worry

  • Lack of understanding
  • Having somehow caused their sibling’s disability
  • They might acquire their sibling’s disability
  • Failure, of letting down their parents further or adding to the burden

Extreme Sense of Responsibility

  • Pressure to be the “good one” (important to help them develop safe relationships in the church that allow honesty)
  • Many Siblings are asked to care for their siblings more extensively than a typical child
  • Many Siblings become their brother or sister’s primary translator

Embarrassment and Its Sources

  • Wanting to fit in with peers
  • Peers uncomfortable around sibling
  • Peers who tease or don’t want to associate with individuals who have disabilities
  • Peers who don’t have the patience to communicate with or understand their sibling
  • Public scenes, dealing with stares and insensitive comments
  • Atypical behaviors, loud noises or unusual speech
  • Toileting issues with children typically old enough to be independent
  • Thinking people will assume the whole family has cognitive delays

Isolation

  • Yearning for:
    • Typical sibling experiences
    • Family outings and outside activities
    • Participation in extracurricular activities of interest
  • Feeling:
    • No one understands
    • Isolated from parents’ attention
    • Isolated from information about the disability or treatment

Guilt

  • Guilt over conflicting loyalties between family and friends
  • Wanting to fit in with peers
  • Wanting time to spend with peers
  • Survivor guilt
  • Guilt over abilities or health
  • Guilt over typical sibling conflicts
  • Guilt over personal needs
  • Finances

Attention for accomplishments

  • Desire to have parental support for outside activities

Sense of Unfairness

  • Life that seems to revolve around the sibling with special needs
  • Desiring individualized attention
  • Not understanding the parent’s exhaustion and distraction
  • Wanting to be celebrated or consoled

Worry About the Future

  • Worrying their sibling might die
  • Worrying about parents dying
  • Worrying if their future spouse would accept responsibility toward the sibling
  • Worrying their own children might have similar disabilities

 

Common Positive Results of Being a Sib

 

Maturity

  • Life experiences are a large factor in how quickly individuals mature
  • If care is taken, Sibs are often more mature than their peers
  • Sibs are used to making the best of challenging situations, often growing up better equipped to handle life obstacles

Appreciation for the Innate Value of the Individual

  • Sibs have been loved well by a child who is often discounted by others
  • Ability to understand what it means to look for what’s inside a person rather than what’s on the outside
  • Having learned to communicate with their sibling beyond words

Compassion

  • Have experienced the difference between compassion and pity
  • Often become successful in helping professions, because of the skills learned through family life

Protectiveness

“I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.” Matthew 25:40

  • Naturally learn to care for the “least of these”
  • Helping others accept their brother or sister
  • Wonderful encouragers
  • Larn to watch out for situations that might not be safe for their brother or sister

Helpfulness

  • Are asked to help more often than a typical sibling
  • Often develop skills of natural helpfulness

Pride in Accomplishments

  • Quickly learn to celebrate every accomplishment their sibling makes
  • Often the best teachers and the best cheerleaders
  • Learn to measure “success” in much more meaningful ways

  

Keep in Mind When Considering Siblings

Sibs Have Unique, Special Needs, Too

  • No two siblings will respond the same way
  • Difficulties in one stage of life may become strengths of character in later stages
  • Unresolved issues can resurface in serious ways during adolescence and adulthood
  • There are many ways the church can embrace siblings
  • There are many situations that should be handled by a professional counselor, not by a well-meaning church-worker

 

How Birth Order Might Affect Sibs

Sib as Older:

  • More likely to worry about whether they somehow caused the disability
  • More likely to have given up things he/she loved
  • Knows life without the child with disability
  • Often feels more responsibility to “be the good one”

Sib as Younger:

  • Fearful pregnancies
  • Over-protectiveness
  • Younger children caring for their older siblings (“reversed” birth order/responsibilities)
  • Child has never known the family without disability and may not notice the difference for many years

 

How Parents Can Support Sibs

 

What All Children Want

  • Time with parents
  • Safety and security
  • Acceptance
  • Life values
  • Focus on his/her own needs/activities
  • A quality relationship with siblings

 

What Sibs Desire Most

  • Time with parents
  • Acceptance from parents and their peers
  • Better understanding of their sibling’s disability
  • Affirmations/Celebrations of their own successes and failures
  • Minimal embarrassment
  • Other siblings of kids with disabilities to share stories with
  • Quality relationship with the sibling with disabilities

 

How Churches Can Support Sibs

  

Counseling Opportunities for Sibs

  • —Many issues described earlier are best handled by a competent professional
  • Christian counselors are best equipped to help the child see value in finding fellowship and support in the church
  • Christian counselors are also best equipped to recognize that God created the child with special needs with value and purpose 

Activities for Whole Families

  • Extend intentional, personal invitations to these families to all church events:  Plan potluck dinners or other socials.
  • Provide extra help or childcare that allows parents to attend men’s/women’s ministry events and couples retreats
  • Provide educational/training opportunities for the parents:  Workshops on sibling issues, Bible Studies/Encouragement from Scriptures.
  • Support group facilitation

Activities for Children Affected by Disability and Sibs Together

  • Respite events
  • Children’s choirs
  • Special events and holiday parties
  • Joni and Friends Family Retreats

Activities that Focus Specifically on the Sibs 

  • Lots of fun and a bit of “spoiling”
  • Hands-on snacks and crafts
  • Opportunity to talk about the good things and the bad things about their unique families
  • Opportunity to talk about and define the specific disabilities found in the group
  • Opportunity to hear God’s Word and be encouraged

Opportunities for Sibs to Interact with Other Sibs (Church-based Sib activities)

  • Reminds the church that these kids have unique needs
  • Gives Sibs the chance to receive special attention from their church family
  • Allows Sibs opportunity to hear a biblical perspective on disability
  • Enables Sibs to begin honest, nurturing relationships within the church

 A Word about Community-based “Sib Shops”

  • Sib shops have existed for more than 20 years and are an extremely valuable resource
  • Participants share fun activities, prepare a meal together, do fun crafts, are educated on disabilities, and talk about sibling issues
  • Church-based activities are not meant to replace Sib shops, but add a faith component for siblings the church embraces

 

 

Additional Sib Resources

 

 

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