Sibling's Story

My name is Yolanda.I am 35 years old and have 2 sons. JD aged 5 and Niclas aged 3.I also have an Autistic brother, Dugan, aged 12 who was born 22 years after me. 

When Dugan was born, I was married and living my own life. Because of the age difference, I never really saw him as my brother but just as my mother’s baby.

I spent some time with him when he was a baby. He was “normal” then and I treated him just like I would any baby.He started walking and playing, carrying chickens around the yard, riding his tricycle, laughed a lot, playing with the hosepipe and squirting water everywhere. 

He was saying some words and in general he was a happy and contented boy.He loved it when I tickled him, hugged and kissed him and chased him around. 

Then suddenly it stopped.He went missing somehow. He hid in a world of his own.Everyone was devastated because we could not find out what had happened to him.My mother stressed all the time, read books, frantically searched for answers.She was sent from one doctor to another, no one could tell her what was wrong with my brother.

Where he previously spoke, he was now quiet, and afraid of everything.He did not want to play or allow me to tickle him anymore.  He refused to eat and we bought and tried all types of food, trying to entice him to eat.Eventually we fed him fish with mayonnaise and water, whenever he was hungry.

My mother went to all the doctors and specialists.She was told that he should be institutionalized.  My mother refused.She read to him for hours while he ignored her, even while she was doing the dishes she would sit him in his chair and  explain to him what she was doing.

Things improved when we found out what was wrong.We now knew what to search for and what we had to do to help Dugan.

My mother prayed for him constantly.We all prayed constantly.If he would just start speaking again, we all lamented, he was nearly 4 years old and still no spoken word!

One morning he woke up and smiled for the first time in many months.Soon after he started saying his first words………….  My mom believed and prayed, and it got better as the days passed.Our motto became: “some response is better than no response”

It was very difficult in the beginning.He had a constant way of shaking his arms or keeping them locked behind his back, while he kept walking in circles.He slapped himself frequently and sat in his rocking chair for hours.I guess if that was all he did it would have been alright, but it wasn’t. 

I think the hardest part of getting used to Dugan was the noises he made when he started talking again.It was very high pitched, always following the same pattern and he kept at it until he fell asleep.He never kept quite.The only way that anyone had peace was when they left the house.  Even closing the door and sitting in another room didn’t help much.  He was loud enough that you could hear him right through the door.

It took a while, but I got used to it.I could actually sit in the next room (door closed off course) and read.My brain started filtering out his noise. 

It all changed when you got in the same room with him again.He kept talking at the top of his voice, mimicking advertisements on TV and mimicking movies that he saw. He repeated everything we said.  You could only stand it for a while before you made excuses and disappeared.  In retrospect, I think it was his way to communicate with me.

Later on, I could actually be in the same room for longer spells without wanting to flee.I think that was the worst of it, the noise.I never minded going into town with him or having other people see me with him.It did cause problems because he looks like any other “normal” child but he doesn’t act “normal”.He is a big boy and people in general expect more of him than what he is capable of. 

I promised myself right from the start that no matter what people said about my brother, it would be their problem, not my problem. Dugan has always been a part of my life and will stay a part of my life. I visit often and see him two, three times a week and I am amazed at the progress that he has made.I am truly proud of my brother.  He has guts.

I miss the affection that we had when he was small.He does not remember his affection for me, but there is something special, a bond between us.He will never kiss me out of his own free will.  I have to always beg him for a kiss and then accept a very fast and forced kiss on the cheek.  But, he does call me Lalla, greets me and even shares his day with me if I ask.

He will climb into my car and go places with me if I invite him, and I think that only means he trusts me.That would also mean that I have been part of his life for long enough that he has accepted me and feels as comfortable with me as he can be. 

Dugan is Dugan and I have often wished for him not to be Autistic, but he is.I do accept him as he is.To me he is just a 12 year old boy with his own likes and dislikes.  He’s stubborn and headstrong, but he can, like any other child, be bribed with sweets or cajoled into a kiss if you promise him something. If my mother died, I would take him with open arms and care for him as though he was one of my sons.

While I have been writing this, I started wondering (and I have never before) how Dugan would be if he was normal?I guess if he suddenly turned “normal” now, it would take a lot of getting use to.

My youngest, Nicolas, is a very busy little boy.He is constantly climbing things, creating havoc in the household and teasing his brother mercilessly.But that’s Nikolas.Change him and he wouldn’t be who he is.When I get into bed at night I think of all the things he’s done today and I wouldn’t change him for the world. 

Dugan can’t change.He is who he is.I only wish him a good life where people can understand him better, acknowledge him for who he is and not see him as something that must be fixed.  My children are at the age where they have imaginary friends, they make up stories and tell things that might be fibs but are the truth to them.I know I must have been the same as a child, but I have lost that as an adult. 

Dugan, I guess, is much like them.He has his own way of thinking and doing things.He lives in his world where everything is the way it should be.Just as we see him as being different, he looks at us and we are alien to him.

I can’t and do not want to change my brother, he is just fine the way he is.He will always need someone to watch over him.He will always be a little anti-social and difficult to understand, but he is Dugan, he is my brother and I love him.

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