Everyday after school, I ask my eight-year old brother, Aaron, how his day went. Sometimes he tells me he had a good day and got a red stamp as a reward. Other days, he tells me he sat in the principal’s office for lunch and was sent home early.
Whether Aaron has had a great day or an awful day, I am always sure that it was an adventure.
My brother Aaron is a little different from most children. He has Down Syndrome, meaning he is mentally-challenged.
When I was seven-years old, my parents sat me down and told me that they were going to have another child. I already had a younger sister who was three and I did not understand why they wanted another baby. But I did not have much say in the matter, as the child was already on the way.
Two days after Aaron was born, I became worried that something bad had happened. My parents cried a lot and a couple of people that I did not know had been coming over to our house.
My parents proceeded to tell me that my newborn brother had Down Syndrome. I became confused when they explained to me that Aaron had a trisomy 21 (extra genetic material on the 21st chromosome). They then explained that my brother was mentally challenged; I now had a ‘retarded’ brother.
Little did I know this tiny, minute piece of a cell would cause so much frustration, joy, love and passion.
Many children with Down Syndrome never get the chance to shed their light on the world. Joni Eareckson Tada, the founder and CEO of Joni and Friends International Disability Center, said, “over 90% of pregnant women who are given a Down Syndrome diagnosis choose to have an abortion.”
This statistic breaks my heart. While children with Down Syndrome do require extra time of the parents, the payoff is well worth it. Society sometimes tells us “a person is better off dead than disabled,” Eareckson said. As Aaron?s big sister, I beg to differ.
Activities create closeness
Aaron brings me joy on a daily basis. I enjoy wrestling with him and playing ‘tickle time,’ as well as helping him with his homework and watching him participate in taekwondo.
In each activity he does, he has friends, despite his disability. I am quite sure we are all better off knowing Aaron.
Last month, Aaron received a time-out from his teacher at school. His teacher asked him to please sit down on the two pieces of tape she had marked out for him in an ‘x’. However, Aaron refused to take the time-out.
When asked why, Aaron said, “Jesus died on the cross for my sins, with nails in his hands. I don’t want to sit there.” The pieces of tape had been arranged in an ‘x,’ but to Aaron it looked like the cross where Jesus was crucified. He thus refused to sit on the ‘cross.’
Aaron impacts decisions outside of home
Because of my brother I have become a much more compassionate person. Children with Down Syndrome have a special place in my heart.
If I see a disabled person at an event, I try to help them in a simple way. Whether offering to tie a shoe, or help find a parent, I know I am making a small difference in the person’s life for the better.
Sometimes the people around me mock those with special needs. This I find hurtful, since my brother could very well be the person they make fun of one day.
Occasionally my brother will have a major outburst or throw a temper tantrum. Then other parents stand, looking down their nose at my family as if we were the scum of the earth.
My parents certainly have no problem disciplining my brother. Can these other parents not see that?
Rather than trying to help, they seem to assume my parents simply let their child run around and yell because they just do not care, which is not true. My parents do everything they can to help Aaron have better behavior, but it does not always work right away.
On an upbeat note, Aaron has a truly great personality. He cares deeply about his family and friends and is passionate.
Aaron enjoys making ‘friends’ with television characters. His favorite movies are Toy Story 1 and 2, and he believes that Buzz and Woody are real. In addition, they are his ?friends,? since he has the action figures.
Aaron is so ‘close’ with Woody that he decided he wanted to have a birthday party for him one year. He invited over five of his friends while my parents ordered pizza and baked a cake all for Woody’s Birthday.
Sometimes Woody loses his hat and Aaron becomes extremely distressed. He cannot sleep at night until Woody’s hat is found.
My brother creates so much joy in my life. When I am feeling as low as I can get, I know that I have to keep going because my brother Aaron is watching me.
Our family adores him as well. My 11-year-old sister Lauren and I sometimes argue over who gets to spend time with Aaron. My parents have meetings often on behalf of Aaron, usually with his school. They plan how he will get care.
I once asked my mom if she ever got frustrated at how much time she had to take out of her work schedule because of the little guy.
“Never, ever,” she said.
Tolerance and an elevator
Two years ago, my family was at church, which has a multi-level kid’s center. Aaron enjoys riding the elevator, which he is sometimes allowed to do as a treat for acting well in class.
On this morning, Aaron decided to take off his shoes. When he came back down the elevator, my mother asked him where his orthotics went, but he said he did not know.
When the next person who tried to use the elevator was stuck inside, we knew that Aaron had pulled something. Eventually we figured out he had broken the elevator by jamming his orthotics inside the shaft. The elevator was soon fixed and we got his orthotics back.
Many people would get frustrated if they had to live with Aaron everyday. However, for me, I have never known it to be anything but a blessing. Sometimes it does not feel like a blessing, like when Aaron broke the elevator, but that does not change or stop my love for my brother.
Not everyone can or should have a special needs child in their family, but everyone should be tolerant and polite to the ones they meet. These people mean the world to their family and friends. There is no need to bring them down or hurt their feelings.
