From The Outside Looking In – Next Installment of Sib Corner

By Anuska Ullal

Anuska and Rishi

Anuska and Rishi

Imagine you are in a room full of people who are talking, laughing, and having a great time. It looks like fun and you want to join in. You open your mouth to say something but can’t think of the right words. Nothing comes out. You’re stuck. You try again the next day with the same result. You can’t figure out how to participate so you sit back, watching and hoping that someone will acknowledge you. Day after day you walk through the world confused as to why you can’t do what everyone else does and you question why people treat you differently.

This is life for my older brother who lives with Autism. For 36 years he has lived in a bubble, one that he cannot get out of and none of us can get into. He loves to eat. He loves to swing outside on the swing set. He loves being around people. Yet he becomes withdrawn when he can’t join in the conversation, disappointment visible on his face when he walks away. He cannot read or write and has a very limited vocabulary that not everyone understands. He has feelings and his pain is palpable when he realizes he can’t do everything he wants to.

For 35 years I have lived on the outside of my brother’s bubble, not always able to understand his world. Looking back on our childhood I was selfish, very selfish. I wanted my mom to do things with me. I wanted my friends to come over to my house. I didn’t understand what Autism was and why he acted the way that he did. I wanted him to behave like all my friends’ siblings. The sadness and anger that grew within me were natural reactions to feeling left out and not getting the attention I wanted. I would later realize, when I was much older, my brother was and is experiencing the exact same feelings.

For a long time I felt like I didn’t have a brother because I couldn’t talk to him. I didn’t have a relationship with him like my peers have with their brothers. So I distanced myself and did my own thing. As I grew up I started to realize that he has a personality and in many ways we were like “normal” siblings. We would fight, take things from each other, and were very territorial. But we were also nice to each other and played with each other. We graduated high school together, took family trips together, and grew to understand each other.

Looking back over the last 17 years, I have some guilt. I went to college, got married, and started my own family, while he has stayed in the same developmental place. I wish he could experience what I have and find the happiness that I feel now. He has a good relationship with my husband and adores our daughter. But I can only imagine how he feels knowing that he won’t have a family of his own.

Most of the time people don’t give him enough credit. He understands more than he can say. He is very attentive and is aware when people are talking about him. He is also very curious and asks everyone what they did that day or what car they drive. It is clear he wants to learn and understand the people and world around him. It’s amazing how he remembers everyone; even people form our childhood that I have forgotten. Despite these great qualities he knows there is something different about him and he can’t express his feelings. It breaks my heart when he asks what is wrong with his brain. I wish I could explain to him that he is incredible the way he is and that he has influenced me in so many positive ways. Because of him, I grew up with a compassion for everyone and it would hurt to see people being picked on for their differences. Because of him, I believe everyone deserves the same opportunities in life. Because of him, I do what I do. So today, I volunteer and sit on the Board of Trustees at the Autism Society of Colorado, as well as the Sibling Leadership Network/Sibling Tree. I also am now a council member for the Colorado Developmental Disabilities Council.

My relationship with him is so special and although it’s been a struggle, I wouldn’t have it any other way. From the outside looking in to his bubble I can’t imagine what his world must be like but I want to thank him for who he is, because he has made me who I am. So I will continue to bring awareness, volunteer, and advocate for him, to ensure he’s happy and experiences life to the best of his ability.

3 thoughts on “From The Outside Looking In – Next Installment of Sib Corner

  1. Ur write up has left me in tears as Rishi is so adorable n the pain u feel for him says so much.Being part of the family I totally understand ur agony . GOD BLESS you BOTH . LOVE U

  2. Dear Anuska,

    Your beautiful heartfelt writing made me cry today. You are such a beautiful person inside trying to get in the bubble of your brother’s life. I have loved Rishi since the day I met him when we moved to Colorado in 1993. You have very loving parents and admire their courage and what they have sacrificed. Your mom is amazing person.

    Couple of years ago on your dad’s birthday I gave him a book which I had come across. The book is English translation of a book from Japan. It is about a boy suffering from autism trying to explain to his dad how much he loves him, but can not tell him. Your dad told me he did read that book when he was travelling abroad on one of his trips. Your dad is working with the best doctors on the “chip” to provide Rishi what he deserves. I prey continued success to him in his endeavor.

    I always think about Rishi and think about his bubble. He is a beautiful person. He remembers me every time we meet but I can’t have a conversation with him that hurts me.

    I understand what you are going through and wish the peace of mind and strength to enjoy your life with Rishi.

    Love,

    Datta Uncle
    10-23-2015 (11:45 AM Denver)

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