We can't forget about the siblings. What do they have to say about their brother or sister with a disability? How do they feel? Below you will find stories and resources to help your child understand their feelings and know that they are not alone.

Brothers and Sisters

We know from the experiences of families and the findings of research that having a child with a disability powerfully affects everyone in the family. This includes that child’s brothers and sisters. Many authors and researchers have written with eloquence about how the presence of a disability affects each sibling individually, as well as the relationships between siblings.

The impact, according to the siblings themselves, varies considerably from person to person. Yet there are common threads that run through their stories.(1) For many, the experience is a positive, enriching one that teaches them to accept other people as they are. Some become deeply involved in helping parents care for the child with a disability. It is not uncommon for siblings to become ardent protectors and supporters of their brother or sister with special needs or to experience feelings of great joy in watching him or her achieve even the smallest gain in learning or development. Megan, age 17, says of her life with her brother who has Down syndrome:

Every day Andy teaches me to never give up. He knows he is different, but he doesn’t focus on that. He doesn’t give up, and every time I see him having a hard time, I make myself work that much harder...I don’t know what I would do without Andy. He changed my life...If I had not grown up with him, I would have less understanding, patience, and compassion for people. He shows us that anyone can do anything.(2)

In contrast, many siblings experience feelings of bitterness and resentment towards their parents or the brother or sister with a disability. They may feel jealous, neglected, or rejected as they watch most of their parents’ energy, attention, money, and psychological support flow to the child with special needs.(3) As Angela, age 8, puts it, “[T]here are times when I sit down and think, ‘It’s not fair!’”(4)

And many, many siblings swing back and forth between positive and negative emotions. Helen, age 10, whose sister has severe cognitive impairments and seizures, begins by saying that she’s glad to have a sister with special needs. “It has opened my eyes to a world of people I never would have known about.”(5) But she also says, “Sometimes I wish I had special needs. I think that a lot when Martha gets ooohed and aahed over and nobody even thinks about me.”(6) And then in the next breath, Helen says, “Another thing is that it really makes me mad when kids slap their chest with their hands and go, ‘I’m a retard!’ It made me so mad!”(7)

The reaction and adjustment of siblings to a brother or sister with a disability may also vary depending upon their ages and developmental levels. The younger the nondisabled sibling is, the more difficult it may be for him or her to understand the situation and to interpret events realistically. Younger children may be confused about the nature of the disability, including what caused it. They may feel that they themselves are to blame or may worry about “catching” the disability. As siblings mature, their understanding of the disability matures as well, but new concerns may emerge. They may worry about the future of their brother or sister, about how their peers will react to their sibling, or about whether or not they themselves can pass the disability along to their own children.(8)

Clearly, it is important for you to take time to talk openly about your child’s disability with your other children, explaining it as best you can in terms that are appropriate to each child’s developmental level. As Robert Naseef remarks, “Just as parents need information, so do siblings, on their level.”(9)

If you’re concerned about sibling issues, let NICHCY put you in touch with resources that can help you open up the lines of communication and address the needs of your nondisabled children. You may also find there is a support group available to your children, which can provide an “excellent outlet” for siblings to share their feelings with others in a similar situation.(10). The Internet also offers the possibility of connection and sharing. Visit the area of NICHCY’s Web site called Zigawhat! to identify disability-related Web sites that all your children can enjoy or appreciate.

References

1.      McHugh, M. (2002). Special siblings: Growing up with someone with a disability. Baltimore: Paul H. Brookes.

2.      Meyer, D. (1997). Views from our shoes: Growing up with a brother or sister with special needs (p. 89). Bethesda, MD: Woodbine House.

3.      Lavin, J.L. (2001). Special kids need special parents: A resource for parents of children with special needs. New York: Berkley Books.

4.      Meyer, D. (1997). Views from our shoes: Growing up with a brother or sister with special needs (p. 21). Bethesda, MD: Woodbine House.

5.      Ibid, p. 41.

6.      Ibid.

7.      Ibid, pp. 41-42.

8.      Lavin, J.L. (2001). Special kids need special parents: A resource for parents of children with special needs. New York: Berkley Books.

9.      Naseef, R.A. (1997). Special children, challenged parents: The struggles and rewards of raising a child with a disability (p. 144). Seacaucus, NJ: Birch Lane Press. (A revised edition of this book was published in 2001 and is available from Paul H. Brookes.)

10.  See references 10 and 12 above.