Return to: Georgia Sensory Assistance Project | On-line Newsletter | Revised 04/29/2004

Growing Up With a Sibling With a Disability by Jennifer Tumlin

Growing up with a sibling with a disability has its challenges but also has its rewards. Sometimes, it's tough feeling like you don't get enough attention, having to do extra work, and always having to explain your sibling's disability, actions, and behavior. It is scary thinking about the future and what's going to happen to your sib. Throughout our lives, though, the positive has outweighed the negative. Here is our story about how our sister's disability brought our family together, and us stronger, and made us better people. 

We found out that our sister Natalie had cerebral palsy when she was six months old. I was 31/2 and Tracy was 1 11/2 when Natalie was born. We knew that something was not right because there were complications during Natalie's delivery. The doctors weren't able to diagnose her immediately. Finding out about Natalie's disability was hard on our parents. They were sad, scared, and unsure about what it meant for the future. So they went out and learned all they could about cerebral palsy and enrolled Natalie in therapy and programs that could help her.

Some of those activities were fun for Tracy and me. Every week when Natalie would go to physical therapy and occupational therapy, we would get to write on the chalkboard or play on the therapy balls. Therapy was kind of far away, so every week on the way home, we got to stop for ice cream. When Natalie took horseback riding lessons, Tracy and I got to lead the horses and help feed them. My mom started a parent support group and started the United Cerebral Palsy in Augusta. We got to be on television for helping with the UCP Telethons. There were lots of different things that we HAD to do because of Natalie, but our mom tried to find something fun for us to do in each of those activities.

We would go on family vacations. Sometimes it was tough to get Nat places because of  her wheelchair, but that didn't stop us. There was always a way to include her; sometimes we just had to be creative. For example, when we went to the beach, we'd carry her down to swim, build sand castles, and we'd dig a hole in the sand for her to sit in. At times it got very tiring trying to include her in everything because it took a lot of extra effort. But most of the time it was worth it because she loved being included in everything going on, and we felt better too. In all the years that my family went on vacation, there was only one time that Natalie wasn't able to go, and it was hard being without her. She was pretty mad that she couldn't go on that trip, with good reason.

Natalie never went to the same school as Tracy and me. We worried that people wouldn't accept Natalie or that they would make fun of her. She has severe cerebral palsy and needed help with everything. We had to feed her and help her get out of her wheelchair by lifting her. When she was young, she could put some weight on her legs, and we'd hold her up so she could "run" around the house. A lot of the time, it was hard to find a way to include her, but we felt guilty leaving her out. The other thing that was tough was that Natalie got more attention than Tracy and me. We knew that she needed it. My mom and dad were worried about "sibling rivalry" but it was tough because Natalie needed the attention. That is something that we will always have to deal with. We still spend a lot of time together as a family, and we are aware of her needs, like giving her extra time to eat and facilitating conversations for her participation. When Natalie is given the opportunity to share in conversations, her personality and humor really comes out and makes our time together more fun.

There were a number of things that my parents did to try to make things easier on us. They expected us to include Natalie and to baby sit some of the time. They expected that as much as any other parent would expect it. Even though they had expectations, they were never demanding, and they paid us to baby sit. They lived a very normal life and traveled without us and had time to themselves. Both my mom and my dad made time for us individually too. They encouraged us to get involved and play sports, musical instruments, and get involved in social and school activities. They encouraged that we get involved and do things that we enjoyed for ourselves.

There were many things that helped us continue to include Natalie. We knew that her quality of life would be better and that she would be happier the more active she was. That drove me to do things that we normally wouldn't have done. It could be a very simple thing, like cooking dinner. Natalie would say, "No me" which meant that she wanted to help or do something. She loved to help cook, and even if she just held on to my wrist when I was stirring the tea, she was happy to help. She loved to call her friends, and she had a hard time talking, we got her a speaker phone and helped facilitate conversations with her friends. We would take Natalie to social activities such as bowling, Special Olympics, or conferences and support her in her environment. We also expected that Natalie would support me in my activities, like coming to my soccer games, piano recitals, and horse shows.

One of the most frustrating things is knowing that you can do things that your sib can't do. With that, sometimes you're frustrated because you can do things that they can't and you feel guilty. What they need from you is acceptance, love, and inclusion. So find the things that you can do that you can include them in. There are lots of things that they can participate in with you even if they aren't doing it just like you. Including your sibling and letting them share in your fun experiences will make you feel better and bring you closer, even though it's a lot of work. Having a sib with a disability opens up a part of you that most people will never have the opportunity to experience, and has enriched our lives tremendously.