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What it's like to live with an autistic brother



I was 7 when Evan and Brendan were born. They were a handful, but I was so excited to have two baby brothers. Evan was talking before Brendan, and they both walked at about the same time. Right around their second birthday, though, things began to change. Evan was losing his language skills and eventually stopped saying anything at all. When he didn't respond to his name, my mom and dad got worried.

After months of trying to figure out what was wrong, our babysitter mentioned her nephew with autism and suggested Evan might have it. My parents researched the disorder, then took Evan to a doctor at Vanderbilt University. Evan was 3 when my parents received the diagnosis: He had moderate to severe autism. Basically, autism is a developmental disorder that affects brain functioning. Anything from social skills to communication skills are hindered by it. Most experts believe the symptoms of autism can be lessened, but there is no cure.

My parents immediately explained it to me, but I didn't quite understand. When I saw my grandfather cry, I got frightened. He's always so strong. Looking back, I think my family was grieving the loss of the dreams they had for Evan.

ALL EYES ON BABY BRO

Right away, my parents' full attention went to Evan. Brendan and I were given lots of love, but there was no way around the fact that a lot of care and energy had to go to Evan. Early intervention is extremely important with autism. You have to solve as many problems as you can while the child is still learning. Following his diagnosis, Evan began speech and occupational therapy. Brendan and I had to tag along to his sessions, which were four or five times a week, for a couple of years. That was a really tough time for the whole family.

My parents were wonderful, making sure we each had alone time with them. My dad took Brendan on outings every Saturday, and I had plenty of special times with my mom.

It became really hard for Brendan to sleep, since he and Evan shared a room. Evan was often so full of energy that he couldn't stay in bed for even a minute. Most kids can be calmed at bedtime, but there was nothing that could stop Evan. With autism, kids understand what you're saying in that moment, but they might not understand it 10 minutes later.

I kind of became a second mom to Evan. I liked helping out since my parents had so much to deal with. By the time I was 11, babysitting was a huge part of my life. It was fun, because I loved the twins so much, but I became resentful. I wanted to do stuff with my friends, but it was hard to find a sitter who could handle Evan. He wasn't potty-trained until he was 10, and you can't expect a regular sitter to change him all day long.

I think the toughest thing about dealing with an autistic kid is that he doesn't respond like other people. He's in his own world. Most autistic kids can't connect at all, but I've always felt really connected to Evan and so do many of his teachers.

He attends regular classes at school, which has helped his social development. The other kids are supportive and want to be friends with him. He's had very few problems with teasing. When it has happened, Brendan turns all "big brother" and is incredibly protective. As sweet as that is, it's also an issue because Brendan has had fights with other kids.

Between ages 5 and 8, things got very tough for Brendan. Since he couldn't possibly get as much attention as Evan, he sometimes acted out and became fairly destructive. If Evan hit Brendan for no reason, Brendan retaliated. He didn't understand that Evan has no control over those things.

Brendan has made comments like, "We always do stuff to make Evan happy. We never do what I want to do!" I thought Brendan was selfish, but I now realize it must be challenging to be overshadowed by his twin's needs.

FRUSTRATING, FUNNY!

There are definitely things that have driven me crazy. For instance, Evan can't handle loud noises. He cries and covers his ears, so my parents could never attend my choir concerts together. That was a bummer. Even certain restaurants I like are too loud for Evan.

But even worse is that Evan likes to tear stuff up. I've lost jewelry, headbands, papers, everything! He also loves to break glass. Countless times, I've walked into my bathroom and found everything smashed. After my initial anger, I realize he can't help himself. Evan does not know he's done wrong, but he gets sad when I'm upset. He has a look that says, "Why are you angry?"

Evan didn't talk again until he was 8. He'd repeat things he heard from movies and TV, but he couldn't put his thoughts into words. Now, he tells us a lot of things--what he wants to eat or if he feels sick--which is important to us.

One of his talents is that he can tell us who plays what role in any movie he's seen, because he memorizes the credits. Luckily, Evan understands us pretty well. He answers "yes" or "no," but he can't engage in basic conversation.

The hardest part is that Evan has no sense of fear or danger, so he gets into risky situations. He's attracted to water and will just jump in. We were at a museum with an outdoor fountain, and within minutes, Evan was splashing around. I had to go in after him.

When he was younger, we had to keep a really close eye on him, because he could bolt at any time. It's better now, but if he gets agitated (we call it a "melt-down"), there's no telling what he'll do.

Evans behavior can be a little embarrassing. In restaurants, he often yells or spills things. People give my parents a look that says, "You should control your child." It's horrible. Church is even worse. While everyone's quiet or praying, Evan might yell out a line from a movie. Once he hollered, "Kill the beast!" from Beauty and the Beast. It was embarrassing--but actually fairly funny.

GIFTS FROM EVAN

I'm proudest of Evan when he unexpectedly has the ability to use language. He sometimes surprises me with what he has to say. Evan has also taught me unconditional love, compassion and to accept other people's differences. I've learned not to care so much about what others think, and I'm less judgmental.

Evan also has motivated me. Since I tagged along to all those speech therapy sessions, I saw amazing people teaching my brother to talk. That's what I want to do. I plan to become a social worker and work with people who have autism.

We're hoping Evan can graduate high school, but it depends on how quickly he excels in language use and comprehension. If he continues to move along, we're hoping he'll be able to live a semi-independent life. My biggest wish is that he'll gain better communication skills. We want to know what's going on in that head of his. He's so smart and has a great personality. It's frustrating that I can't get to know him on a deeper level.

For Brendan, my wish is that he continues to become his own person and shake any resentment he might have. Years from now, Brendan surely will recognize that he's a more understanding person for having lived with Evan. All in all, though, I'd have to say both of my brothers are perfect just as they are.

 

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BY EMMA SHOUSE, 18, AS TOLD TO SANDY FERTMAN RYAN ON 3/30/2014 12:00:00 AM

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