Written by Feryaal Tahir
Shiny floors, the sweet, spicy smell of cinnamon pretzels, and greasy, fresh French fries combined with the chatter of families with grins from ear to ear, rushing into the varieties of shops, all to participate in some great New Year’s sales. I was only able to take in about three and a half minutes of it as my family and I literally ran in and out of the outlet mall. The enjoyable outing that most “normal” families partake in, of course, was not going to work for mine. My sixteen year old sister, Mehreen, who is on the Autism Spectrum, still perceives the mall as a pit of piercing noises and a tunnel of never ending light with too many stimulating sights to take in. The intense sensory processing causes Mehreen to have a tantrum every time we even go near the mall, so we’ve stopped trying altogether.
Throughout my life, I am, always have been, and always will be the voice my sister doesn’t have. Mehreen, who is only 13 months younger than me, is my absolute best friend. She’s great at basketball, a common hobby we share, and she’s a whiz at the computer. We love to laugh together, share moments together, and, most importantly, be there to support each other no matter what. Our relationship is a little different than most sisters have it, though. Mehreen’s autism makes it hard for her to communicate because she has very little speaking capability, so socializing like other teenagers her age isn’t really possible, but that doesn’t mean she doesn’t understand everything going on around her.
..It’s hard for people who don’t live with it to understand.
Although this can be viewed by others as my test from God, I feel like I have a one-up on life because I have a sister with autism. Yes, you read that right. She’s my biggest blessing. That may sound strange considering all the challenges we face, but I truly do feel blessed. For one, being so close in age, my sister and I have an unexplained and different kind of special bond. Even though she can’t always say it, we both know how much we love each other and love being together. We laugh so much, sometimes we don’t even know why. We have inside jokes that literally nobody in the world would ever understand. And if I ever need someone to rant to, I will always talk to Mehreen because she is the best listener. Even though she can’t reply to what I’m saying or give advice, I know she’s listening because if I cry, she cries, and if I laugh, she laughs. Talking with her always ends up helping me see the bigger picture in life, forget all my problems, and feel a lot better.
Another blessing that comes from having a sister with Autism is the closeness of my family. I hear of many families that do not spend time together because of busy lives or just being unappreciative of each other, but for my family, it’s the opposite. We spend a lot of time together, celebrate everyone’s accomplishments, and always help each other out when going through a hard time. My parents are always so proud of us and grateful when they see us help Mehreen by babysitting, changing, cleaning up after, or even just giving things up for her. Having Mehreen in our life has given us the opportunity to pause, try not to make life too busy, and appreciate what really matters.
I wouldn’t be telling the whole truth if I said having a sibling with a disability was easy. There are many challenges that make my life extremely different from everyone else I know, and honestly, it’s hard for people who don’t live with it to understand. This affects every aspect of our daily life as a family because a lot of times, we are unable to attend parties, masjid events, and do “normal” family activities all together—like going to the mall. We can’t simply go to public places without extreme planning or one person staying home with my sister because we fear a meltdown or an uncomfortable situation. It’s rough when people don’t understand why we can’t always attend parties they have or go to events when we’re invited. It’s our reality, which I admit, makes me feel angry at my sister, sometimes, for acting in ways that stop us from doing things as a family or letting us do what we want all the time when we have to give in to her fits. And there’s also the pressure and guilt I feel as I worry about her future because there is the possibility that one day, I will become responsible for her care and creating a loving and happy life for her within my own.
Growing up, there have always been challenges and restrictions to my life with my sister, but my fear of the future is one that I don’t think anyone else can truly understand. As I approach the end of high school, everyone’s first question is often, “Where are you going to college?” or “What do you plan on studying?” Unfortunately, someone like my sister will not have the opportunity to go to college or study towards a degree in a field of her choice. My fear includes what will happen in two years when she finishes Neuqua Valley High School with the rest of the class of 2018. Sure, she will move on to the IPSD STEPS program for a couple of years, but how will she gain her independence or get a job with an income to support herself? As my parents get older and prepare to retire soon, how will we be able to live with the peace of mind that she will be forever taken care of? The loss of hope in the government to support us is an understatement. The State of Illinois has already cut a lot of funding for people with disabilities, and the fact that the new President of the United States has made fun of and dare to imitate a person with a disability and his Secretary of Education is very ignorant towards the matter of Special Education is beyond scary. If the only possibilities for an occupation for my sister to choose from resemble the mall and if she is unable to work, who will support her?
…If I cry, she cries, and if I laugh, she laughs.
I have to go on with my life, though. Right? But how can I go to college, get a job, start a family of my own, essentially, creating an entirely new life, without feeling the least bit guilty that my sister can’t have the same? I worry about who will take care of her when my parents reach their old age, their limit, and they have endured all they can. Of course, I will always be there for Mehreen, and take her in, but I am also afraid of not being able to keep her happy and make sure she gets all she will ever need. The nerves run down my spine as I think about finding a husband and raising a family that will love my sister the way she deserves to be loved—without judgment, resentment, or ignorance. The process of letting others into my life has been and will continue to be a meticulous one, as I feel the need to be protective and take my entire family into consideration when I do so.
Having a sister with special needs has definitely shaped me into a more patient, understanding, respectful, and nonjudgmental person. I have learned to be grateful and appreciate the small blessings in life. It’s through experiences like these that I’ve learned that although my family is different, and it takes a lot of consideration before we can do “normal” things, it shouldn’t hold us back from trying time and time again. If we stop trying, we only hold ourselves back from all the things we could possibly enjoy together.
My hope for others is that they do more to reach out, be helpful, and be a friend to anyone with special needs as well as their families. It can be hard to carry the load of this fear I carry with me constantly. My sister’s fear of the mall is comparable to my fear of the future. To people on the outside, it may seem ridiculous, but in our lives, it’s the tragic reality of the daily confusion and worry about what to do next. We maintain the balance of knowing that what the future holds is completely out of our control by remaining hopeful and that has eased the pain and worry for the time being. My faith in Allah has made all challenges seem a lot easier. I truly believe that God will not test me in any more of a way than He (SWT) knows I can handle and that through dua (supplication), Allah will help me through all of my problems. We remember that everything will pan out for a reason and there will always be people who can relate and will support us, and these are the main things that have gotten me through life thus far.
Hopefully, as time goes on, there will be more awareness and support for people going through the same thing as my family. My hope for my own future is not only to be able to help my own sister, but many others just like her. I am a special needs activist for life, which influences the types of people I meet and the activities I take part in, and I know it will have a large impact on my future. I didn’t choose this life, but it’s a part of me that I will never lose. And I hope I will always be grateful for it. But right now, we focus on the little things, like getting into the mall.