A letter to my autistic brother on his 18th birthday | Ambitious about Autism
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A letter to my autistic brother on his 18th birthday

Dora Perera writes a letter to her brother with autism on his 18th birthday for International Day of Families.

Dora's brother Christos

Dear Chris,

I’m writing this on your 18th birthday because I know you will never read or understand it. Being loved, the way that you are loved, can be a burden. It can change people, it can make you self-conscious it can mess with your life. The way I love you, the way our family loves you is ferocious, it’s threatening and it’s dangerous. I fear that when it comes to you, reason is absent.
 
I remember wanting you, waiting for you.

When you were born I couldn’t stop staring at you. I’d look at you when you were in your cot in our parent’s room and tap your back or pull your ear so that you would wake up. When you were being bathed, fed, changed I watched and learned because I couldn’t wait to be your big sister.  Mum would line up all the pillows on the bed so that I could lie next to you and play. I remember your crooked smile, the one that was too big for your face, your huge brown eyes and your pointy ears. You were shiny, new and perfect and I remember thinking that life could never go wrong as long as you were there. You grew up and took your first steps in our living room. We had built a fort of couches and pillows and all three of us were sat on the floor just staring at you. We were so in love with you.

When you got a bit older you moved into my room, slept in my old crib and I was a bit jealous. Your silly, toothless laugh made sure I didn’t stay jealous too long. I loved the way our parents were with you. Then, you started sleeping through the night, walking around, falling off piano chairs and needing stitches but I remember you ignoring me when I called your name. You cried, a lot and all the time. You were so mad, so frustrated and we didn’t know why. So, when you broke everything but couldn’t tell us why our parents took control of the situation. Those years are such a blur. I remember them taking you to our GP and asking if you might be deaf, I remember brain scans in our house.

I remember realising that I would have to wait for you even longer.

When I think of you growing up after your diagnosis, I well up with pride. I grew up with a brother who was exceptional. I am so lucky you exist. The greatest thing I can say I’ve done in my life is that I was able to take part in your education, your development; by doing homework with you and teaching you how to speak, read, write along with our parents and your therapists. You turned our lives upside down but amidst the chaos you reached your milestones; like writing your name, saying your first word. You wrote a card for Mother’s day recently and the memories of you learning came rushing back. You were so excellent, incomparable and you accomplished so much at such a young age. You are inspiring.

I think back to 2004 when we were standing outside our house in Sri Lanka, while our parents packed up our stuff because we were running from the tsunami. The only thing I could think of was how to keep you safe. It’s funny what stupid things adrenaline can make you think of. You just wanted to get on with your day and your routine and all I did was hold you and wonder what was going to happen to us next. Once we were safe, I remember watching videos with you and mum of our holidays, trying to forget what we had just lived through. I think back to those years and how I threw basketballs at our cousins’ faces, and spat in another one’s face because they were young and naive and made fun of you. I think about those years, and how much I struggled with the overpowering love I felt for you, all the time. It was then that I realised I had to change things, mentalities, perceptions, I had to make this a place you could grow up in being yourself. I had to get my life together because running around and picking fights with people wouldn’t do you any good. I remember that despite wanting you and waiting for you I had to leave you.

The day I left you for university I cried and missed you. I spent 10 years waiting for you to say my name, ask me for water, tell me what you need and when you could I left. I remind myself every day that I have no other choice than to be the best I can be for you. When I’m done, when I want to quit, when I never want to see anyone again, I remind myself that I need to be someone you can be proud of. To do that, I have to be away – I need to be selfish so that I can give you more than you will ever need when it’s the two of us. I need to prepare a life that you can join and be happy to live. When I want to pack and come home to you I think of how we grew up just like any other sister and brother; our stupid fights, how much I annoy you when I am with you, how you always forgive me for singing in the car, how you always kiss me when I’m hurting and try to make me smile when I’m mad.

On your 18th birthday, I project to our future together. I think of all the things I want to change and I worry. I know that if I could tell you, you would make all the stress go away because in the last 2 years that I’ve been telling the world about you, you have inspired so many. Your story is one of greatness, trouble and triumph. I think of all the people I’ve met because of you, all the people you have touched. I’ve reached the point now, right before your birthday where I can see that  people’s attitude has changed towards you, but there’s still so much to do. Our future together will be rocky difficult. There will be times when we yell at each other and hate each other but I promise you I will always fight for you and I will always be your big sister. I will want you forever and I will wait for you for even longer.

I’ll go back to worrying tomorrow when you are 18. Your birthday is a celebration, it will be a tribute to all the obstacles you have faced and a break before you face the next. In 18 years you have taught me that there is not a single thing we cannot achieve if we work hard. Today you blow your candles on your own, after years of mum trying to show you how. Today you let your 30 guests hug you, kiss you, touch you, be around you after countless tantrums, attacks and years of shielding yourself from it.

Today, to everyone else, you are an adult. To me, you will forever be that kid that broke all my toys.

Happy Birthday Chris. There is no way a mind can comprehend and there are no words to articulate the way you are loved.

For longer than forever,

Dora

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