Sibling Group

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Letter from a sibling…

I am 8 years old. When I was 7 I found out my baby brother John had Down Syndrome. At first I wondered what Down Syndrome was. Then I learned that it’s when you get an extra chromosome in every cell in your body. I was amazed. I love going to DSACK. It really is a blessing to our family that he has Down Syndrome. We’ve made so many friends from DSACK. I hope you feel the same way I do. We love John and he loves us. I love to read to my brother. He is a talker. His favorite word is up. John is the happiest person I know. Sometimes I forget he has Down Syndrome then I remember. Just remember your brother or sister is unique and special. So are you!

Karina

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I’m 6 years old.  Having a baby brother like John is not that hard to handle.  He is a joy to our family.  When I found out that John had Down Syndrome I felt like my whole life would change.   I like to laugh with John.  When I feel sad he feels sorry for me and smiles and he makes me feel happy.  In the morning me and John dance.  He loves dogs.  We have an aunt that has a dog.  When she comes over John is excited.  I’m sure your baby brother or sister is going to be a joy to your family.

KATHERINE

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Resources for Siblings

Strategies to Promote Healthy Family Relationships
Be open and honest - explain issues related to Down syndrome as early as possible. Brothers and sisters often prefer to avoid a single “big” conversation and instead have a continuing dialogue as new questions and concerns emerge. If children shy away from bringing up the topic, parents can help by periodically asking them if they have any questions.

Allow siblings to express negative feelings.
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 allow children the space for expression.

Recognize that siblings may experience difficult moments.
Parents can help prepare siblings to handle embarrassing or upsetting situations, such as scenarios during which people stare at or make fun of their sibling. They should honor a child’s need to establish distance from a sibling with a disability when out in public. This especially comes into play during the preteen years when the need to “fit in” peaks.

Limit caregiving responsibilities.
While assigned duties make siblings feel helpful and capable, most siblings want those responsibilities to be limited. Siblings often say they don’t always want to be available for babysitting, for example. Nurses should remind parents that siblings are children first, not substitute parents. Limit responsibilities to help avoid feelings of pressure, resentment, and guilt.

Recognize that each child in the family is unique.
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.

Be fair.
Children often say parents allow children with Down syndrome to “get away with more.” They want to see their parents consistently set and enforce limits for acceptable behavior. Parents also should allow brothers and sisters to have their own friends and interests and to do so without guilt.

Take advantage of support 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 many books for children and teens about sibling and disability issues. Below, we have listed some resources that may help your family.
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.

Source: Children’s Hospital Boston

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Fasten Your Seatbeat: A Crash Course on Down Syndrome for Brothers and Sisters by Brian Skotko and Susan P. Levine (Paperback – Mar 9, 2009)

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Sib-Shops for Siblings:

DSACK is looking for participants and volunteers to be involved.  If you are interested in joining the Sibling Support Group for DSACK siblings ages 8-12, please email DSACK sibling.group@dsack.org or call (859) 494-7809