March 12, 2015

by: Guest Contributor

A Brother’s Perspective

This week’s blog post was written by Aaron Crow, the brother of Emily, who is a client served by UCP of Greater Cleveland. For Developmental Disability Awareness Month, we asked Aaron to share his unique perspective about growing up with a sibling who has a disability.

Throughout my academic experience, I have read articles, written papers, given presentations, and spun about every assignment you could think into a topic with special needs. (Click here to read a paper Aaron wrote when he was in the fifth grade.) I have answered questions for years about special needs, (some less tactful than others) but all came from a desire to know more. I have participated in the Team UCP at the Cleveland Triathlon which helps fund schooling/therapy to countless people who have special needs. But this is the first time I was approached to write an article about special needs. You may be wondering, “What is this guy’s obsession with a topic that affects such a small minority of the population?” I hope I can answer that question, and more throughout this article as I discuss how incredibly blessed I am to have my sister Emily in my life.

To give a little background, Emily was born on May 7th, 2000, and immediately the doctors knew something was wrong. She was whisked away into intensive care where she would spend the first four weeks of her life in and out of appointments. My family has called her specialists the “A-Team” because her condition is so rare it generally requires the best care possible. That’s one of the reasons I knew Emily would be in good hands at UCP, because she always receives the best care possible. Throughout this article, you learn some of my struggles having a special needs sister, but most importantly some of the joys. I’d like to thank UCP for giving me the chance to write this article to shed more light on what being a sibling to a special needs person is like. But most importantly, I’d like to thank UCP for truly providing Emily “A-Team” care she needs.

To put it in perspective, the odds of having a sister like Emily are like winning the Mega Millions twice in a row. I’ll spare you the calculation… that’s 1:108 billion (the amount of people who have lived on the Earth). Yes you heard that right, Emily is one of a kind. Her condition is called a 7Q Chromosome Deletion: she is the only known person missing a very specific piece of her 7th chromosome which is what caused her special needs. An abbreviated list of her limitations caused by the deletion are: developmental and cognitive delays, cardiomyopathy, atrial septal defect, low-sensory, scoliosis, lordosis, lazy eye, disproportional physical features, and cortical vision impairment to name a few. But when I see her, I don’t see all these defects, I just see my sister who I am so lucky to have in my life. Here is my story about how having a sister with special needs has been for me.

I don’t have many memories about Emily from when I was young, but I remember my parents sitting me down and doing the best they could to explain to a six year old that his sister would be very different than other kids her age and would need a lot of special care. I had never been an older brother before, so honestly I didn’t know anything different. I just knew that I loved her, and that she needed me to help her. As we both grew older, I was able to take more responsibility for her care, even though the majority fell onto my mom and dad. I was homeschooled until 4th grade, so I spent a lot of time doing schoolwork in the car, or at her therapy appointments that I went to. I never felt slighted though; it just became a part of our family. This is one of the first lessons she taught me: selflessness.

If you asked anyone in my family about who runs the household, they would definitely say Emily. It’s hard to think about yourself when you have someone that needs your care constantly. But my parents set an example for me, and I never saw them complain about having to take care of Emily. I naturally followed their lead, and even though I am not at all perfect or completely selfless, my sister has taught me the importance of putting others first in life.

Another lesson Emily has taught me is patience. The older she gets, the more patience she requires. The difference between the patience required when she was young and now, is that instead of not knowing what she was doing, Emily is now more willful. Emily is very good at getting what she wants regardless of whether she should have it not. It’s often hard to communicate with her about what she can and cannot have. Whenever I am around her, it’s almost like I have to step into the role of a parent. There is not a second of the day that someone in the house does not know what Emily is up to, and that will never end because she needs that constant care.

My mom taught me that one of the most important things about parenting is remaining consistent; this can be quite difficult with Emily, because when someone has had the mental capacity of a 4 year old for most of their life, they have naturally been wanting the same things they shouldn’t have for 11 years. Giving her Goldfish Crackers and cheese every meal would be easier, but obviously not the best thing for her. Being consistent is hard with Emily because when she fixates on something she wants, asking 10 times in a row is not uncommon for her. This also takes a great deal of patience: something my mom and dad seem to have limitless amounts of. Daily activities with Emily also take a lot of patience; try getting a 100 lb. teenager to move down a grocery isle when every muscle in their body is refusing…yeah, it’s as hard as it sounds. But the constant asking/refusing to go somewhere, and the need for consistency, have developed me for life outside of Emily. I feel I am better prepared for a family of my own, because when most guys my age cringe at that repeated pitch of cry only a baby is capable of, it doesn’t seem to bother me because I’m already accustomed to repeated requests.

After reading that last part, I’m not sure you would be jumping at the chance to have a special needs family member so let me make it clear…I love it. There are challenges like walking into a room to see your sister squeezing a bottle of shampoo onto the carpet that make me want to scream and hug her at the same time. Or when you hear that odd silence (you know that sound) and you see what used to be a roll of toilet paper that is now just a trail to the scene. Good thing I already know how to deal with the situation because I dealt with the same situation three times…. in the last week. But when a friend of mine messes something up, it’s so much easier to just accept them and move on because Emily has taught me not much is worth getting upset about.

But overall, the most important thing Emily has taught me is how to see the best in everyone. I’ve had a lot of people ask me if it’s hard to see someone who progresses so slowly, and honestly I don’t think about it much. There are times when I will think about my colleague’s siblings who are the same age, but what I think about is everything I appreciate about Emily. I have learned to love every single one of her accomplishments, and overlook any deficiencies she has based on society’s standards. This lesson has taught me that everyone I meet has positive qualities, and how important appreciating the best qualities is instead of focusing on areas they may fall short. In my family, we say that “normal” is just a setting on the dishwasher; in other words, everyone has unique qualities which make up who they are. Regardless of whether you are related to someone with special needs, know someone with special needs, or have no first-hand experience with special needs, I challenge you to find the best qualities in the next person you meet regardless of how “normal” they are.

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