Parenting Children with Special Needs asked Gwyn Meinhardt of Parkville, Mo., to weigh in on this topic. The dynamic is unique for every family, but often siblings face worries and responsibilities that other kids their age do not. Gwyn is 13 and attends middle school. Her older brother, Raef, will be 16 in February.
Raef has multiple medical and developmental challenges, including Neurofibromatosis Type I (NFI), cerebal palsy, and low vision. He had hundreds of seizures a day as an infant, but has been seizure-free since radical brain surgery (right hemispherectomy) when he was eight months old. As a result of NFI (a genetic condition that causes tumors to grow on the nerves), he developed an optic nerve tumor and went through 14 months of chemotherapy at age two. Despite his challenges, he is an active and happy high school sophomore. Gwyn is the younger sister who always adores, and occasionally tolerates and antagonizes him.
What’s something you love about Raef?
Gwyn: There are too many things to list.
What was the last thing you and Raef fought about?
Gwyn: Who got to sit up front in the truck. (Raef won, I lost. I just wanted the heated seat.)
How do you help each other?
Gwyn: I help him with walking sometimes, and he kind of just helps me with being happy and keeps me going through tough times. He helps me with many other things too.
Have you ever had to stand up for Raef, or help take care of him? What happened?
Gwyn: I don’t really remember a time I had to stand up for Raef, but I’m sure I have had to. A time I had to help take care of him was actually quite recently. He had leg surgery, and I got to visit him in the hospital when they made him stay the night. During the time he had his cast on I helped him walk and stuff. The cast made him really itchy, and so we found out if I would shake the cast then it kind of scratched his leg. Then when got the cast off and was getting used to walking again, I helped him with stuff.
I can also get my brother to do certain things that my mom and dad can’t get him to do. For example, he’s a really picky eater, and I’m the only one who can get him to try new foods sometimes.
What advice would you give other kids who have a sibling with special needs?
Gwyn: Just love them because God gave you a very special gift, and that’s your sibling. Some people ask you things like “how do they act?” or “do they have to have a lot of help doing things?” Sometimes I find that offensive or it makes me feel weird, but I realized that they don’t live the same life that I do and that’s just how they ask. So don’t take offense and just answer the questions normally because they are interested (if they aren’t trying to be mean).
Another piece of advice is don’t ever feel ashamed of your sibling(s) no matter how many people stare at your sibling or you; instead keep your head held high and be proud of it. I get kind of mad when people stare at me and my brother constantly, even after they see that I’ve realized they’re staring. I wish they would be more accepting, but I’ve never been ashamed.