I know the single most defining moment of my life was when I comprehended how significant Ashley’s special needs are. It was in that moment that my life completely and permanently changed. I was forced to let go of the dreams and hopes I had not only for Ashley’s life, but also for my life, and the rest of our family’s life. Some of them are little moments like we will never go get our nails done together, and others are major moments like barring a miracle she will never get married, have children, or simply converse with her voice. During those first few months after her diagnosis, I talked to several moms that had children with autism. I tried to get an idea of what I should be doing for Ashley. Through these conversations, I learned a lot about what I should do, but one thing seemed to stand out as disturbing to me. All of these mother’s lives had become autism. When I asked them questions about friends that didn’t have children with autism or interests they had. I was told by every mother that they let all of that go. They as a rule were only friends with other parents, who also had children with autism. They didn’t have interests and hobbies that weren’t related to autism. This concerned me. Autism had taken enough; my life was already permanently altered. Children with special needs are hard. Life is stressful, and I’m certain the difficulty of it all is taking years from my life. Over the years, I have decided there are some things I won’t let autism have.
Autism cannot have my marriage. Yes, we have to make allowances because of it. There are times one of us has to stay home with Ashley, while the other goes some place. Going out for date nights are rare. But we spend a lot of time together. We watch movies or play games at home. And even if we have to stay up until 3 in the morning to get time together, that is what we do. If I can stay up all night taking care of Ashley’s needs, surely I can sacrifice some sleep to spend time with my husband. And when we are together, we aren’t even talking about kids or special needs – usually. We are not going to sleep in separate beds because one of us is always with Ashley. We are not going to lead separate lives because we have made Ashley and autism the center of our existence.
Autism cannot have my friendships. It is hard to be friends with people that don’t get it, or accept our kids. But the real friends, the friendships that matter are there regardless. And most of them don’t even have children with special needs. I’m certain the time I spend laughing with them is replacing some of the years on my life that the stress of autism is taking. I am very blessed to have a close friend, who has a son with special needs. I know she is going to get things that most others don’t, however, special needs does not define our friendship. We have many other things in common, and most of the time we spend together has nothing to do with special needs.
Autism cannot have ALL my time. It does take a great portion of my time. But it is okay to read a magazine, have fun with my kids, spend time with my family and friends, or do nothing at all. It is okay to take time away from research, therapy, etc. and just not even think about autism.
Autism cannot have ALL my money. Yes, again, it takes a lot of my money. But it is fine to go spend our money on something else. It is okay to take a family vacation, go to a movie, or get my nails done. There is always going to be something that could benefit Ashley, but life goes on and the rest of us exist as well.
Autism cannot have my faith. I believed in God before I had children, and just because my child has special needs does not make God any less loving. I can’t imagine going through this experience and the stress, and holding anger and resentment towards God. God loves me and my family, but he never guaranteed us perfection here on earth.
Autism cannot have my hope. I have to have hope that tomorrow will be better, and that there is a promise of a better future.
Autism cannot have my family. We have 3 children; all of them have been impacted in some way by autism. But they still get to be kids, and to experience everything that entails. They get to have fun and participate in activities. They also get to have present and available parents. I will not miss my children growing up because I am too focused on autism, therapies, and treatments.
Autism cannot have my joy. My joy is in the Lord, not in the circumstances of today or the trials of this life. If I am walking around angry and bitter, then I let it take all of these things from me.
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Originally posted February 2012
Saturday, August 10, 2013
Autism Cannot Have...
I know the single most defining moment of my life was when I comprehended how significant Ashley’s special needs are. It was in that moment that my life completely and permanently changed. I was forced to let go of the dreams and hopes I had not only for Ashley’s life, but also for my life, and the rest of our family’s life. Some of them are little moments like we will never go get our nails done together, and others are major moments like barring a miracle she will never get married, have children, or simply converse with her voice. During those first few months after her diagnosis, I talked to several moms that had children with autism. I tried to get an idea of what I should be doing for Ashley. Through these conversations, I learned a lot about what I should do, but one thing seemed to stand out as disturbing to me. All of these mother’s lives had become autism. When I asked them questions about friends that didn’t have children with autism or interests they had. I was told by every mother that they let all of that go. They as a rule were only friends with other parents, who also had children with autism. They didn’t have interests and hobbies that weren’t related to autism. This concerned me. Autism had taken enough; my life was already permanently altered. Children with special needs are hard. Life is stressful, and I’m certain the difficulty of it all is taking years from my life. Over the years, I have decided there are some things I won’t let autism have.
Autism cannot have my marriage. Yes, we have to make allowances because of it. There are times one of us has to stay home with Ashley, while the other goes some place. Going out for date nights are rare. But we spend a lot of time together. We watch movies or play games at home. And even if we have to stay up until 3 in the morning to get time together, that is what we do. If I can stay up all night taking care of Ashley’s needs, surely I can sacrifice some sleep to spend time with my husband. And when we are together, we aren’t even talking about kids or special needs – usually. We are not going to sleep in separate beds because one of us is always with Ashley. We are not going to lead separate lives because we have made Ashley and autism the center of our existence.
Autism cannot have my friendships. It is hard to be friends with people that don’t get it, or accept our kids. But the real friends, the friendships that matter are there regardless. And most of them don’t even have children with special needs. I’m certain the time I spend laughing with them is replacing some of the years on my life that the stress of autism is taking. I am very blessed to have a close friend, who has a son with special needs. I know she is going to get things that most others don’t, however, special needs does not define our friendship. We have many other things in common, and most of the time we spend together has nothing to do with special needs.
Autism cannot have ALL my time. It does take a great portion of my time. But it is okay to read a magazine, have fun with my kids, spend time with my family and friends, or do nothing at all. It is okay to take time away from research, therapy, etc. and just not even think about autism.
Autism cannot have ALL my money. Yes, again, it takes a lot of my money. But it is fine to go spend our money on something else. It is okay to take a family vacation, go to a movie, or get my nails done. There is always going to be something that could benefit Ashley, but life goes on and the rest of us exist as well.
Autism cannot have my faith. I believed in God before I had children, and just because my child has special needs does not make God any less loving. I can’t imagine going through this experience and the stress, and holding anger and resentment towards God. God loves me and my family, but he never guaranteed us perfection here on earth.
Autism cannot have my hope. I have to have hope that tomorrow will be better, and that there is a promise of a better future.
Autism cannot have my family. We have 3 children; all of them have been impacted in some way by autism. But they still get to be kids, and to experience everything that entails. They get to have fun and participate in activities. They also get to have present and available parents. I will not miss my children growing up because I am too focused on autism, therapies, and treatments.
Autism cannot have my joy. My joy is in the Lord, not in the circumstances of today or the trials of this life. If I am walking around angry and bitter, then I let it take all of these things from me.
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Originally posted February 2012
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