It's A Family Affair

Loughlin family of Auburn. "Tim is so comfortable and respectful around the kids," said Valle Dwight of Florence. Speaking about her oldest son and his recent volunteer efforts at a local therapeutic riding program, she added, "He makes an effort to look past disability."

Tim, 13, whose brother Aidan has Down Syndrome, is no stranger to assisting children with challenges. As captain of Aidan's unified* basketball team, Tim "played his heart out" at the Special Olympic Winter Games. Honored with a gold medal, he was recognized as the "player who more than anyone exemplified the spirit of Special Olympics," Dwight said.

Down to just four players at one point, Tim instinctively rallied his team to a different sort of victory that day. "We didn't win any games," his mother said. "But Timmy won a lot of hearts."

Throughout their lives, siblings of children with special needs will experience a myriad of complex emotions, struggles, rewards, and challenges. "In the special needs parenting adventure, siblings are real-life heroes," wrote author Judy Winter in Breakthrough Parenting for Children with Special Needs.

Aidan (age 10) and Tim (age 13) Referring to her "two very great brothers," both of whom have Autism Spectrum Disorder, Cara Loughlin, 12, said, "they (Brian and John) need more special help than other children."

Being the youngest child, Cara has dealt with the impact of the boys' diagnosis her entire life. "I never really thought about how I am affected by my brothers' special needs before," she said.

"From a parent perspective," said Mary Loughlin, mother of Cara, Brian, and John of Auburn, "the challenges are to avoid being so focused on the child with special needs that you do not have time with typical child(ren)."

Loughlin, Central Massachusetts Coordinator at the Federation for Children with Special Needs (FCSN), makes every effort to provide a typical life for her daughter, but admits that it "is not always possible."

Essential home and school programs, medical appointments, and therapies can put demands on families, which make balancing individual needs difficult.

"I try to make sure Cara has time alone with me," Loughlin said. "I let her choose when her siblings join in."

According to Tufts University Child and Family News, research shows that feelings of anger, guilt, embarrassment, and fear are normal reactions. Although siblings of children with special needs may become overachievers, they tend to be mature, altruistic, and sensitive to the needs of others.

When he was younger, Tim was often bothered by Aidan's natural exuberance, especially in public places. Dwight recalled a YMCA Family night a few years back, where "Aidan was the center of attention," causing Tim discomfort. Conscious of Tim's feelings, Dwight began to make a point to redirect Aidan's at future outings, for his brother's sake. Dwight was quick to add that the positive impact Aidan has on Tim far outweighs any struggles and challenges he's endured.

As would be expected, Cara sometimes grieves for the typical sibling relationship she'll never have with her brothers and expresses the unfairness about sacrifices she's had to make. In contrast to this sense of loss, however, she has a mature ability to look beyond single characteristics and is able to view people in broader terms.

"She sees herself as a positive force for good within the world," her mother said.

Loughlin stressed that typically developing siblings should form unique and individual personas.

"As (Cara) enters adolescence and questions who she is, I don't want her identity to be all about her siblings with special needs," Loughlin said. "I want her to see that her value, like her brothers,' lies inherently in who she is and not in what she can do."

In regards to educating children about a brother or sister's disabilities, parents are encouraged to include all family members in ongoing, age-appropriate discussions about causes, effects, and future implications. Donna Rubenoff, Educational Advocate and Family Support Coordinator for The ARC of Greater Boston, advises parents to keep lines of communication open and suggests using literature to support conversations.

Involving typical siblings in family decision making (asking questions such as "What do you think?") can help them express opinions and feel valued. "Kids themselves have a lot of insight," Rubenoff said.

In collaboration with Children's Hospital Boston, The ARC of Greater Boston conducts Sibshops, originally founded by Don Meyer. Based on Meyer's philosophy, The ARC is committed to the well-being of siblings who are likely to have the longest relationship with the person with special needs. Sibshops are safe havens where children can meet with peers and discuss the positives and negatives of having brothers or sisters with special needs, Rubenoff said. These highly successful networking programs are fun, yet purposeful, allowing for both laughter and tears. Information about Sibshops can be found through The Sibling Support Project at www.thearc.org/siblingsupport.

Though not the same as the relationship she shared with her siblings, Dwight has recently come to appreciate her sons' unique bond.

"Lately I see them actually playing...They've found ways to connect" through sports, such as basketball and wrestling. Dwight added, that like any typical little brother, "Aidan totally knows how to bug Timmy."

Ultimately, Dwight's goal is for Aidan to become as independent as possible. However, she realizes that he may require assistance in the years ahead. In reference to the future responsibility for Aidan's care resting upon Tim, she said, "I think Timmy will insist upon it..."

If Tim's resilience on the basketball court is any indication, his mother's confidence is certainly not unfounded.

*Special Olympics Unified Sports is an initiative that combines...Special Olympics athletes and athletes without intellectual disabilities (called Partners) on sports teams for training and competition. Age and ability matching of athletes and Partners is defined on a sport-bysport basis - Special Olympics (www.specialolympics. org)

Sue Lovejoy is a freelance writer from Holden.

Suggestions for Parents

 Prioritize one-on-one time with typically

developing children  Promote the sharing of feelings  Provide information appropriate to age  Provide opportunities to network with

peers in similar situations  Share future plans  Be a positive role model  Use family challenges, as ways to promote

problem-solving skills  Seek professional help, if necessary

Sources: Breakthrough Parenting for Children with Special Needs by Judy Winter

(Sibling Support Project - Donald Meyer) Resources & Literature

For Parents:  The Sibling Support Project of the ARC

of the United States

(www.thearc.org/siblingsupport)  Riding the Bus with My Sister: A True Life

Journey by Rachel Simon  Sibshops: Workshops for Siblings of

Children with Special Needs by

Donald Meyer  Special Siblings: Growing up with Someone

with a Disability by Mary McHugh  The Ride Together: A Brother and Sister's

Memoir of Autism in the Family by Paul

and Judy Karasik  Uncommon Fathers: Reflections on Raising

a Child with a Disability by Donald Meyer

For Children:  SibNet (for younger siblings)

www.chmc.org/departmt/sibsupp/sibnet.htm  SibKids (for older siblings)

www.chmc.org/departmt/sibsupp/sibkids1.htm  Ben, King of the River by David Gifaldi

Extraordinary Friends (Let's Talk About It)

by Fred Rogers  My Brother, Matthew by Mary Thompson  My Sister Annie by Bill Dodds  Views From Our Shoes - edited by

Donald Meyer  We'll Paint the Octopus Red by

Stephanie Stuve-Bodeen