Life with a Sister with Special Needs

I debated as to whether or not this was something I wanted to share on my blog, but I’ve decided that as a lifestyle blogger, I’m devoted to staying true to what that means. Lifestyle: my life, my story, and anything else that happens along the way. Since today is International Women’s Day, I decided it was the perfect opportunity to share a little more about the strongest woman I know, my sister, Emily.

My sister is a big part of my story. My lifestyle would be completely different if I had a typical sibling, but I don’t, and that’s perfectly fine by me. I have never been ashamed or embarrassed to talk about my sister, and I have never tried to conceal the fact that my sister is different.

I feel that acceptance of people with special needs starts with their siblings and friends stepping out and sharing their stories and publicly expressing their love and support for these individuals. You post pictures with your best friends for the world to see, don’t these people deserve the same kind of acknowledgment? The answer is yes.

I have already introduced her a little bit here, but that was back in October, so today, I’m going to tell you a little more about my sister, Emily, what it’s like to live with a person with special needs, what special needs are in general, and you how you can be more accepting.

Another reason I decided now would be the perfect time to share more about her with you all is because it is Disability Awareness Month in Indiana, which is Emily and I’s home.

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Em and I cheesin’ on my seventeenth birthday.

For those of you who don’t know, special needs is another way of describing someone with disabilities. My sister has Down Syndrome and Autism; Those are her disabilities. She is not a typical person, but that’s okay because she’s an extraordinary person.

First things first, she is NOT stupid. She may be a little slower with some things, but she is extremely intelligent (more than she likes to let on) and incompetent should be the adjective farthest from your mind when describing her. She can do several things on her own, but many things like tying her shoes and brushing her teeth, she can’t do by herself.

In many ways though, she is very much like you and me. She is twenty years old, she loves listening, singing, and dancing to music, she enjoys watching TV in her free time, and she loves food (especially bread and french fries, I mean, who can’t relate?). She also has the most beautiful smile in the world and an extremely contagious laugh.

Now that you understand her personality a bit, we need to address what makes her different. These are things that people just need to understand. Down Syndrome is a genetic disorder, also known as Trisomy 21. She has an extra chromosome that you and I don’t have, which means that person can have mental and physical struggles that typical people don’t have. She was born this way and there is no cure, it’s just who she is and there is absolutely nothing wrong with having Down Syndrome.

However, my sister was not born with Autism, but most people aren’t. My sister was diagnosed with Autism when she was three years old, right around the time I was born. My parents took her to the doctor when they started noticing some things. Up until my sister turned three, she was a typical kid with Downs. She played with her toys as toys are supposed to be played with, she would count to ten and sing her ABC’s, make eye contact with people, carry on small conversations, and address people by their names. The most important thing about all those things was that she talked.

One day my sister slowly stopped making eye contact and started shaking her toys instead of playing with them like other kids do. Most toys she lost interest in. She was no longer as responsive and had a harder time making eye contact. The worst part of her diagnosis was that she dropped speech altogether. She is now what we call nonverbal. I am now seventeen years old and I have never heard my sister talk.

Autism has a wide range of symptoms and common traits. For example, shaking toys instead of playing with them is one, and so is lack of eye contact. My sister gets upset sometimes. She gets frustrated and we don’t really know why. We can assume, but most of the time there is really no way for us to know because she can’t tell us.

We’ve tried every method of communication under the sun, but she’s never really connected with one specific method of communication. When she was little she used to sign, the used PECS (picture exchange card system), and we even tried the iPad apps when she was older. She still uses PECS from time to time, but she just hasn’t connected with any of those methods.

It’s not hopeless by any means. She still vocalizes and has other ways to communicate her needs to us. There is actually medically speaking no reason why one day she won’t just all of a sudden be able to talk, she just has to continue learning, practicing and fighting. She is unbelievably strong, but it’s not an easy fight.

When she gets upset, she takes it out on herself. She’ll tug at her hair and use her nails to dig into her own skin, which is called Dermatillomania. I know it sounds bad, but it really is nothing too severe. It’s just so devastating for us to watch her hurt herself because she can’t express to us what she wants.

But I get it, because can you imagine not knowing how to express your needs to someone? Not being able to tell your family you love them? Not being able to speak up when someone treats you badly? You would be trapped in your own head just because there is some unstoppable force that keeps you silent. It takes a hell of a lot of strength for Emily to get up every day knowing that.

Now, I know your immediate reaction after reading all this might be to pity my sister and my family, but that is actually the last thing that I want you to do. What I ask of you is to try to understand, or at least be willing to hear me out and get the full story.

Emmy and I being photogenic outside Kilwin’s Ice Cream in St. Joe

This is not a sap story. Emily is a beautiful and brilliant girl who is extremely happy and content with her life. Words cannot express how blessed we are that she is a part of our family. She is the greatest sister I could’ve ever asked for. Although she can’t communicate and do many things on her own, she is still living every day to the fullest because she is surrounded by love. She has had the greatest of impacts on my life.

My sister and I are very close. We chill out, listen to music, and dance together. We’ll watch TV together sometimes too, it just depends on how Em’s feeling. I understand things about her that not even my parents always see, and this is part of why I’ll always look out for her. I also know that she’ll always look out for me, as a big sister should, even though she can’t say so, I know so. And I’m telling you with absolute confidence that someday, she will tell me. I swear to it. Every day she gets a little closer to getting those words to roll right off her tongue.

Things can be hard and we can have rough days, but we consistently have more good days than bad ones. I have a completely different outlook on life because of her and her strength. She continues to live and be happy regardless of what she can’t do, and that takes a lot out of a person. I will forever admire her.

Thank you for allowing me to share more of Emily and I’s story with you. Hopefully, you got some insight from it and are now able to think of people like my sister in a more positive way.

Please always understand that people with special needs are people FIRST, so please don’t underestimate the difference you could make in their life because just saying hi, introducing yourself, and giving them the acknowledgment all human beings desire has the ability to make their entire day.

Inclusion is everything. The littlest things can make the biggest difference, so always have an open mind and heart. ♥️

Thanks for stopping by,

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