Caring for Your Family

One of the best ways to find an answer to this question is by speaking to family members of individuals with Down syndrome. In addition, there are many books and articles written by family members about their personal experiences. A message from families that is echoed again and again is that the positive impacts of having a member with Down syndrome far outweigh any difficulties or challenges that may come up. The majority of families share that they are stronger and closer as a result of the experience of dealing with a disability, and that they are more focused on the things that really matter in life. There have also been many research studies that explore how having a child with Down syndrome affects families. These have shown that while these families do experience additional challenges, their levels of well-being are comparable to families who do not have a child with Down syndrome. Researchers say that what seems to determine if families are resilient and able to thrive is their ability to access individual, family, and community resources.

While having a sibling with Down syndrome may present unique challenges, it also provides many opportunities for children’s positive growth and character development. Studies have shown that children who have a brother or sister with Down syndrome can benefit in many ways. For example, these children often exhibit a level of maturity above that of their peers and tend to have more highly-developed communication and social skills. The experience and knowledge gained by having a sibling with Down syndrome also seems to make children more accepting and appreciative of differences. They tend to be more aware of the difficulties others might be going through, and often surprise parents and others with their wisdom, insight, and empathy. Brothers and sisters of an individual with Down syndrome are also very much aware of their sibling’s challenges and thus, often take a tremendous amount of pride in his or her accomplishments. In addition, parents often report that no matter what issues siblings may have with their brother or sister with Down syndrome at home, outside the home they are typically very loyal to their sibling and do their best to defend and protect him or her.

Your children may be doing an excellent job of helping with their brother or sister with Down syndrome, but you want to make sure you are doing all you can to meet their needs as well.

TIPS FOR CARING FOR SIBLINGS

•  Be sure to acknowledge all emotions, not just the positive ones. If your children know that it is ok to express any feelings they may be having about their sibling with Down syndrome, negative emotions are less likely to turn up in other ways, such as behavior problems.
• While it can be beneficial for your other children to feel that they can play an important role in caring for their sibling, don’t give them too many responsibilities in this area.
• Although your responsibilities may pull you in many different directions, pay attention to your children and any changes in their moods. If you notice symptoms of anxiety or depression, get your child the help he or she needs as early as possible.
• 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’s important to an individual child, and dedicate time to those things that would make him or her feel loved or special. Remind your children that all members of your family are special in their own way.

There are many things you can do to keep your relationship strong amidst the added stresses that may come with raising a child with a disability. Two key strategies often mentioned by parents are maintaining good communication and spending time alone together. So take a few minutes every day to talk with your partner. Plan a regular “date night.” Or, take a vacation together. Even if you can’t get away as often as you might like, make an effort to keep your romance alive. Don’t let anniversaries or other special occasions go uncelebrated, and do little things to show your partner that you care and appreciate all of his or her hard work. A loving relationship is one of the best sources of strength and support for dealing with any challenges that come your way.

• Adapting Your Home for a Child With Down Syndrome