by Neven Simpson, Staff Writer
This quarter’s Discussion Series topic, “What About Healthy Siblings?” turned attention to the siblings of children with special health and developmental needs. The interactive panel discussion was held Sunday, May 18, 2011 from 6:30 to 8:30 p.m at Covenant Presbyterian Church in North Austin. The discussion helped parents gain a better understanding of the struggles siblings face and gave practical suggestions for effectively supporting these siblings.
The panel was facilitated by Laura Romero, Hand to Hold sibling support navigator and mother of two children including one with special needs. The panelists included speakers from a variety of backgrounds with different perspectives on what healthy siblings need. They were: Khris Ford, LPC of My Healing Place; Anne Claire Hickman, Child Life Specialist and Vanessa O’Dell, social worker, both from Dell Children’s Medical Center; Emily McElmurry, a children’s art therapist and teacher; and Joan Richburg, an adult sibling and physical therapist. This diverse group helped parents gain a better understanding for their child’s needs, giving them tips for pinpointing issues and preventing problems early. The panelists took time to answer parents’ questions and address their concerns. Common concerns included learning how to balance time between children, worrying about whether or not their kids would “fit in,” planning for uncertain futures, and simply not knowing what to expect as their children grow up. Panelists recognized that many parents worry that the amount of time with their special needs children comes at a cost to the other siblings in the family.
Sibling rivalry and discipline are big issues in most families, but especially in families of children where one or more of the children have special needs. Siblings often complain that their brother or sister is treated differently and not disciplined in the same way. This often leads to protests that things are “not fair.” Panelists shared that parents need to explain what fair means. Fair means getting what you need, not necessarily getting what is the same. Parent Laura Romero uses the phrase, “Life is fair, it is just not always equal,” when explaining this concept to her seven-year-old, typically-developing son.
Early on the panelists reminded parents that siblings often have the same or very similar concerns as their parents when it came to their siblings with special needs. The panelists urged that simply listening to our kids is the key to identifying their stressors. One common misconception about siblings is that they do not grieve. Children of all ages experience grief but it looks different depending on the stage of development. For example, when a child is going through grief they can experience a regression of certain skills such as becoming unable to learn new tasks or not being able to master new things.
Another thing parents need to recognize is that children are fundamentally ego-centric this means that they interpret what’s going round them as being a direct result of their actions. Therefore, it’s important that parents communicate to their children that their sibling’s condition is not their fault. Siblings need to know that they did not cause their siblings to have specific needs. Also, siblings often get the misconception that they can “catch” what their sibling has. The best way to alleviate both of these concerns is to always be honest and use clear, direct language with their children and to speak of things factually. For example, it is clearer to talk about “death” and “dying” than “passing away.” Khris Ford shared her own personal experience with what can happen when clear language isn’t used. For 30 years, she believed the death of her sibling was her fault because no one openly talked about the death. If communication between parent and child does not exist, children will create their own explanations.
The panelists offered practical suggestions for what parents can do to provide effective support for the siblings. Kids process emotion very differently than adults and every child needs an outlet. Some of the suggested activities included journaling, play dates with other siblings who have similar life experiences, therapeutic art and music. It’s a good idea to set aside times for special one-on-one parent and child activities. Taking photographs and making miniature scrapbooks of the time spent with each child can serve as a constant reminder of all the time you do get to spend with your child one-on-one. These are suggestions can go a long way in addressing your child’s needs while alleviating your guilt stemming from having to parent children with very different needs.
Panelists reminded parents that it is important to realize that siblings are just kids and that their behaviors are not always directly linked to being the sibling of a child with a disability. Keeping this in mind, parents were advised to worry less about trying to figure out if problems that arise are related to a “sibling” issue and actually focus on dealing with the symptoms or problem behaviors directly. A final reminder was that all kids need support and every child needs an outlet so by keeping the lines of communication open and honest you can adapt to be just the resource they need.