All siblings have a right to:
1. Communicate with your children.
Be open and honest. Explain issues related to Down syndrome as early as possible. Brothers and sisters often prefer to participate in a continuing dialogue rather than a single “big” conversation. If children avoid the topic, parents can help by periodically providing information and letting children know that it is normal to have questions.
2. Allow siblings to express all feelings, both positive and negative.
Like siblings of any child, brothers and sisters of children with Down syndrome will experience frustrations and negative emotions; parents should know these feelings are generally temporary, and they should allow children the space for expression.
3. Celebrate strengths.
It is important for a child with disabilities to have goals and to develop feelings of self-worth and self-trust. It is equally important for siblings to develop these qualities.
4. Recognize that each child in the family is unique and special.
Brothers and sisters of children with Down syndrome are quick to point out that they also need attention and that they want their accomplishments to be acknowledged. Encourage children to reach their full potential without feeling the need to “compensate” for a sibling with Down syndrome.
5. Offer time and attention to each child.
A child with disabilities requires much of a parent’s time. Be sure to make an effort to spend time with each of your children on a regular basis. Each child is unique, so don’t worry about dividing your time equally. Instead, focus on what is important to each individual child and dedicate time to those things that would make him/her feel loved or special. Remind your children that all members of your family are special in their own way.
6. Remember the principles of guidance for all of your children.
All children sometimes misbehave, get angry, and fight with their siblings. When challenging or inappropriate behaviors occur, try to understand the child’s intensions (i.e., what he/she is trying to communicate). Acknowledge those intensions; then provide the other perspective or rule. Finally, offer a different more appropriate alternative to replace the original behavior.
7. Recognize that siblings may experience difficult moments.
Parents can help prepare siblings to handle embarrassing or upsetting situations such as instances in which people may stare at or make fun of their sibling. Parents should honor their child’s need to establish distance from a sibling with a disability when in public. This especially comes into play during the preteen years when the need to “fit in” peaks.
8. Limit caregiving responsibilities.
While assigned duties make siblings feel helpful and capable, most siblings want those responsibilities to be limited. Remember that siblings are children first; limit the caregiving responsibilities of siblings and allow them to experience childhood. Be especially aware of the caregiving responsibilities falling on the shoulders of the oldest sister.
9. Take advantage of supports for siblings.
Brothers and sisters of children with Down syndrome often are relieved to talk to peers with whom they can share their experiences and to voice both positive and negative feelings. There are also many books for children and teens about sibling and disability issues. Just like adults, children may find their support in a variety of ways and settings.
10. Be aware of teasing or bullying.
It is a real possibility that siblings may have to deal with some teasing or bullying related to their sibling with a disability. Parents can help by being proactive and teaching the sibling how to deal with these situations.
11. Diminish isolation.
For siblings, isolation can occur when typical activities are neglected because of ramifications of the child’s disability. Isolation can also come from feeling like no one else understands or has the same situation.
12. Recognize that parents need support too.
During workshops, many siblings comment that their parents should talk with other parents of children with Down syndrome and learn to “relax more and worry less.” When parents cope effectively, their children benefit too.
References and Resources
Down Syndrome Association of Central Kentucky http://dsack.org/groups/sibling-group/
National Down Syndrome Society http://www.ndss.org/Resources/Caring-for-Your-Family/
Sibling Support Project http://www.siblingsupport.org/publications/what-siblings-would-like-parents-and-service-providers-to-know
The Children’s Hospital of Philadelphia
http://www.chop.edu/service/child-life-education-and-creative-arts-therapy/siblings-needs/childrens-books-address-sibling-issues-listed-by-topic-and-illness.html
Minnesota Technical Assistance for Family Support
http://www.claycountycollaborative.org/committees/MNTAFS%20training/mntafs/siblings_01.pdf
- Experience a safe environment
- Feel valued and respected
- Be children
1. Communicate with your children.
Be open and honest. Explain issues related to Down syndrome as early as possible. Brothers and sisters often prefer to participate in a continuing dialogue rather than a single “big” conversation. If children avoid the topic, parents can help by periodically providing information and letting children know that it is normal to have questions.
- Talk! No matter what age your child is, encourage open communication about his/her sibling’s disability.
- Be open and honest. Share personal feelings to the degree that it is age appropriate.
- Take time to ask about feelings related to having a sibling with a disability.
- Allow siblings to express their anxiety and concerns and validate them.
- Listen to siblings.
2. Allow siblings to express all feelings, both positive and negative.
Like siblings of any child, brothers and sisters of children with Down syndrome will experience frustrations and negative emotions; parents should know these feelings are generally temporary, and they should allow children the space for expression.
- Encourage siblings to see a brother or sister as a person with similarities and differences.
- Make it clear that it is all right to be angry sometimes. Strong feelings are part of any close relationship.
- Acknowledge all emotions – both positive and negative.
- Teach siblings what to do with anger and strong feelings by giving options and setting limits and boundaries.
- Emphasize that no one is to blame for a brother's or sister's difficulties.
3. Celebrate strengths.
It is important for a child with disabilities to have goals and to develop feelings of self-worth and self-trust. It is equally important for siblings to develop these qualities.
- Remember that each child has his/her own strengths to share. Capitalize on these.
- Encourage children to use their strengths. Comment on what your child is doing to help him/her develop an intrinsic appreciation for his/her successes.
- Set clear and high goals for all children in the family. Be supportive of both successes and challenges.
- Offer unconditional support to all children in the family.
4. Recognize that each child in the family is unique and special.
Brothers and sisters of children with Down syndrome are quick to point out that they also need attention and that they want their accomplishments to be acknowledged. Encourage children to reach their full potential without feeling the need to “compensate” for a sibling with Down syndrome.
5. Offer time and attention to each child.
A child with disabilities requires much of a parent’s time. Be sure to make an effort to spend time with each of your children on a regular basis. Each child is unique, so don’t worry about dividing your time equally. Instead, focus on what is important to each individual child and dedicate time to those things that would make him/her feel loved or special. Remind your children that all members of your family are special in their own way.
- Protect certain times to spend with siblings (e.g., bedtime, movies once a month).
- Find short-term care for special events that are important to the sibling (e.g., concerts, programs, plays, sporting events).
- Occasionally put the needs of the sibling first and do what they need or want.
6. Remember the principles of guidance for all of your children.
All children sometimes misbehave, get angry, and fight with their siblings. When challenging or inappropriate behaviors occur, try to understand the child’s intensions (i.e., what he/she is trying to communicate). Acknowledge those intensions; then provide the other perspective or rule. Finally, offer a different more appropriate alternative to replace the original behavior.
- Provide appropriate guidance.
- Teach siblings how to interact and how to express their thoughts and feelings effectively and appropriately.
7. Recognize that siblings may experience difficult moments.
Parents can help prepare siblings to handle embarrassing or upsetting situations such as instances in which people may stare at or make fun of their sibling. Parents should honor their child’s need to establish distance from a sibling with a disability when in public. This especially comes into play during the preteen years when the need to “fit in” peaks.
- Talk over and practice how to explain a brother’s or sister’s disability to friends.
- Welcome other children into the home.
- Don’t always expect siblings to include the child with a disability in their play or activities.
- Help siblings realize that family members without a disability can be embarrassing also, especially parents.
- Find social situations in which the child with a disability is accepted. This sets a good example for siblings to see.
8. Limit caregiving responsibilities.
While assigned duties make siblings feel helpful and capable, most siblings want those responsibilities to be limited. Remember that siblings are children first; limit the caregiving responsibilities of siblings and allow them to experience childhood. Be especially aware of the caregiving responsibilities falling on the shoulders of the oldest sister.
- Use respite care, homecare, and other supportive services.
- Encourage all family members to share caregiving responsibilities.
- Ease the emotional burden of caregiving by accessing support groups, parent mentors, on-line connections, and other networking opportunities.
9. Take advantage of supports for siblings.
Brothers and sisters of children with Down syndrome often are relieved to talk to peers with whom they can share their experiences and to voice both positive and negative feelings. There are also many books for children and teens about sibling and disability issues. Just like adults, children may find their support in a variety of ways and settings.
- Meet other families who have a child with a similar condition, perhaps through a support organization.
- Join sibling related organizations.
- Make opportunities to meet peers.
- Find professional help for siblings when it is indicated.
- Look for sibling groups, Sibshops, support groups, etc.
- Be a catalyst to get support and activities started in the sibling’s community and school.
10. Be aware of teasing or bullying.
It is a real possibility that siblings may have to deal with some teasing or bullying related to their sibling with a disability. Parents can help by being proactive and teaching the sibling how to deal with these situations.
- Watch for signs of distress such as sleeplessness, isolation, aggression, etc.
- Talk to the school staff about encouraging and working on positive attitudes towards people with disabilities.
- Practice with the child how to handle unpleasant remarks.
11. Diminish isolation.
For siblings, isolation can occur when typical activities are neglected because of ramifications of the child’s disability. Isolation can also come from feeling like no one else understands or has the same situation.
- Make sure the sibling’s friends are welcome in the home.
- Offer to explain to a sibling’s friends about a brother’s or sister’s disability or help the sibling with the words to do so themselves.
- Make the household setting as comfortable as possible when the sibling does have friends over.
- Continue family outings and social activities.
- Provide other adults to accompany the sibling to activities.
- Provide the child with stories and articles written by other siblings.
12. Recognize that parents need support too.
During workshops, many siblings comment that their parents should talk with other parents of children with Down syndrome and learn to “relax more and worry less.” When parents cope effectively, their children benefit too.
References and Resources
Down Syndrome Association of Central Kentucky http://dsack.org/groups/sibling-group/
National Down Syndrome Society http://www.ndss.org/Resources/Caring-for-Your-Family/
Sibling Support Project http://www.siblingsupport.org/publications/what-siblings-would-like-parents-and-service-providers-to-know
The Children’s Hospital of Philadelphia
http://www.chop.edu/service/child-life-education-and-creative-arts-therapy/siblings-needs/childrens-books-address-sibling-issues-listed-by-topic-and-illness.html
Minnesota Technical Assistance for Family Support
http://www.claycountycollaborative.org/committees/MNTAFS%20training/mntafs/siblings_01.pdf
- Distributed by the National Dissemination Center for Children with Disabilities (NICHCY)
- Book available through www.woodbinehouse.com
- Additional books available written specifically for parents, siblings, and peers of children with Down syndrome: http://www.woodbinehouse.com/Down-Syndrome.29.0.0.2.htm
- Video available at https://www.youtube.com/watch?v=IEB2bk29AMQ
- Teacher’s guide available at http://www.woodbinehouse.com/my_friend_isabelle_teachers_guide.pdf
- You may be able to adapt some of these ideas to use during play dates or parties.