Living with Autism is a Daily Struggle but Every Moment is Worth It

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Autism and Being Told No

Living with autism is a daily struggle; however, there are good aspects to the life my family has had to adjust to. My autistic son, Jimmy, will be 14 years old next month. Because his 16 year old brother is driving, Jimmy has developed an interest in this potentially dangerous activity. I’m sure that Jimmy will eventually be able to drive; however, I’m not sure that he will be able to go anywhere on his own as his brother does. Jimmy is such a good child that telling him he can’t do something because of his autism is frustrating for both his father and me. We want to give him all we can, but sometimes he just doesn’t realize the difference and becomes bitter over things that he can’t do.

Jimmy is in the 8th grade but is reading and doing math at an early elementary school level. He constantly says, “I can’t read,” but with a little assistance, he can read very basic words and sentences. He gets frustrated with reading so we focus on teaching him words that he will need to live as normal a life as possible. Reading will be one of the roadblocks to getting a license because he probably will not be able to pass the written exam. He has no plans for college or, for that matter, any education beyond what is required. That’s okay.

Living with Autism: The Future

He was once afraid to turn 18 because he thought that he would have to move out on his own and he often talked about suicide. Once his father and I convinced him that we would always help him as long as we were able and that he could live with or near us, he got over that fear. So, I’m okay with him not looking toward college as long as he is looking forward to being an adult.

One of his doctors has suggested that we look into adult living centers where he could get help with his meals. Because a doctor who has a son with autism recommended this, my husband and I thought it was the right thing to do. So, we started looking into centers and Jimmy got scared. Leaving our home simply terrifies him. Therefore, we stopped our search and assured him that he could stay with us as long as he wanted. However, if ever a time came that he wanted to move out on his own, we would help him with his choices. He calmed back down and relaxed about his future once again.

Jimmy works hard with his hands. In High School, he is going to take woodworking classes so that he can run a small shop to make some money for himself. We live on a farm so this is a possibility for him to do from home. He is also in Boy Scouts and is progressing sufficiently through the ranks toward Eagle. He may never reach that highest rank; however, he is well on his way and has progressed further and faster than we ever thought he would. He is tied in 2nd place for the 2nd highest rank in his troop. His older brother has the highest.

Autism and Danger

Jimmy doesn’t understand the dangers of people who want to harm others. Therefore, I can’t let him out of my sight when we are out in public. His brother helps a lot when taking Jimmy to a public restroom, but I rarely let him go alone. Although he is 5’8” and weighs 170 lbs., he could easily be tricked by a predator. He has a great deal of respect for adults and would mind any adult no matter what they told him so we have to take extra precautions to keep him out of unhealthy situations.

Jimmy and I rarely go out alone, and until recently, I made him go into the Women’s restroom with me when we did. He is so big now that people look at him like he is a predator so he will no longer do this. When he must go into a public restroom alone, I stand beside the Men’s room door and stare at everyone who goes in. I also time how long they are in there with Jimmy and if Jimmy ever doesn’t come out in an appropriate amount of time, I have no problem going in to check on him. I have to have this attitude with the world we have today. I must take my time to protect my child as much as I can while I am teaching him how to make it on his own.

Autism and the Autistic Child

Living with autism has been a struggle for Jimmy as well. He spent ten years in speech and language therapy. Although he has improved a great deal, communicating with those outside of his tight circle is still a struggle.

Jimmy has many sensory issues that he must deal with. He only wears blue jeans and basketball shorts because he can’t stand how other clothes feel against his legs. Tags rubbing his neck are another problem for him. We use to have to cut all the tags out of his shirts but now there are a few that he can tolerate. He has trouble distinguishing between levels of pain. If his brother barely hits him, Jimmy cries out; however, if he gets a bad burn from the stove he doesn’t even seem to feel it. Therefore, he is not allowed to use the kitchen appliances without supervision. He even needs help with the microwave. I let him use it on his own but only if he tells me before hand so I can watch the clock to make sure he doesn’t put something in for ten minutes when he should have only put it in for one minute.

Jimmy has been a blessing in my family’s life and we enjoy every minute we have with him. However, we worry about his struggles with daily situations and about what will happen to him when his father and I are no longer able to care for him. He has a good brother and several close cousins who are his age. They insist that they will take care of Jimmy when his father and I no longer can, but that still leaves us to wonder what will actually happen to Jimmy once we are gone. Having said that, I wouldn’t trade Jimmy for anyone else in the world. He is a good mannered and well adjusted child who loves his life and, although we wish things were easier for him, we wouldn’t want to change anything about him.