Sunday, January 2, 2011

A Reason for Hope

It's so easy in blogdom to paint a picture of your life to make everything look wonderful. I've read so many blogs where it just seems like the person writing has everything together. Their husband is perfect. Their children are perfect. Their lives look perfect. Yet, I also know that nobody is perfect.

For the most part, I do post about the positive. I mean, who wants to read posts that are constantly whining and complaining? I try to be upbeat and not always share the not so good things.

However, today I wanted to keep it real for a bit. The reason I want to do that is so that others who are struggling with similar things will know that they are not alone. That there are others who are going through the same thing.

Autism.

It's something we have learned so much about the past few years. Unfortunately, because Nathan is high functioning, it took 18 years and a very traumatic experience caused by him to finally get him diagnosed. Over the years, the word "autism" would run through my mind, but I kept thinking that if that was the case a doctor would have picked it up.

Yet, we went to the doctors only for illnesses and well child visits. Nathan didn't have all the characteristics of many autistic children. Though, in hindsight, many of the markers were there - he couldn't talk, he didn't interact with other children, he wouldn't look at people when he talked to them, he obsessed about things, he would literally scream and shake at loud noises.

However, we never brought these things up at the doctor's office. To me, that was just part of who he was and nineteen years ago, autism wasn't in the news like it is now. So, I struggle with extreme guilt that if I had not been so consumed with working I would have gotten him the help he needed earlier. I feel guilty that we should have known something was wrong.

Dealing with him on a daily basis can be exhausting at times. I lose it every now and then. Many nights I wake up and worry about his future. There are days when I don't want to deal with it anymore.

It's hard on me when people roll their eyes at me when I'm trying to share some of the things he struggles with. I've had people tell me that he just needs to "get over it." That makes me feel very alone in the midst of a difficult struggle. They don't understand that there is not a switch in his brain that can shut autism off and on.

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Nathan obsesses about things and the fire department is all he thinks about. He fixates on the fact that he has to be at every single event or fire call. It doesn't matter if we are in the middle of a major family event or church or anything. That is all he thinks about.

Nathan parrots just about anything he hears. Because he struggles to fit in socially, he basically just repeats conversations he hears. Sometimes, it is inappropriate. Sometimes, it makes no sense to the topic of conversation. He cannot read social cues and doesn't pick up on when he is being annoying to others.

There is a self-centeredness that comes with autism. The world revolves around him and he does not empathize with others well. It would never occur to him that we may be tired or not feeling well or sad. It is not easy for him to put himself in another's shoes.

However, I don't want to share just the negative. There are many positives about this child. He is compliant. He will do whatever I ask him to do and do it fairly cheerfully. As long as it's not interfering with one of his obsessions. lol

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There is an innocence about Nathan that is endearing. He is still very childlike in his responses to things. The school psychologist put it well. She felt that he is emotionally fragile and sweet. He is eager to please. He really wants to do well and help others. His reasoning is just "off" at times.

He is friendly. For all his inability to socialize in an acceptable way, he enjoys people. He likes being around others. He just can't take them in large doses. The mall or places where there are masses of people make him extremely anxious. But one on one or in small groups, he loves people.

Nathan will be with us for a long time. He could live independently with support and that is the goal. There is an agency that deals with adults with disabilities and the school has started the process for them to begin working with him next year. However, we know that he will be with us longer than the average child.

So, I keep praying and asking the Lord for help. I pray for patience on a daily basis. I have been changed by having an autistic child. The Lord has been teaching me to look outside of myself and to lean on Him. I can't do this on my own strength and it's only through His help that I can get through.

There are days that I feel a sense of despair and it's usually after a blow-up, yet He continually reminds me that He has a plan for Nathan. God loves Nathan more than I ever could and that gives me hope!

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