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Wednesday, May 26, 2010
Wednesday, May 19, 2010
Autism Sucks
How soon we realize after one of our children receives a devastating medical diagnosis that the dreams we had for that child are only our dreams, and not necessarily what will become of his or her life. Throughout my pregnancy, I would hear commercials on the radio, read billboards or see entire television shows that discussed the rising rates of autism in the US. At 18 weeks pregnant, it was confirmed a boy was on the way, and I couldn't shake all that I had heard or seen and I worried constantly about my unborn child. I have a friend who worked with special education students who would remind me that I was healthy, that the odds were in my favor, etc.,but I often worried that something would turn out wrong with my baby boy.
Well, Carter made his debut on July 25th, 2006. He was a beautiful but fussy baby from the very beginning. I used to poo-poo people who talked about the mother-son bond, but as soon as I held that boy in my arms, I wanted to consume him, have be all mine, and not share him with the world. He was just so perfect, and I was in love. A love that I had never felt before, a love that was part rapture and part possessiveness of this small, perfect, beautiful boy.
Carter started losing language at around 20 months. He used to point to a family picture and just rattle off our names..Mama, Dada, Alice (he couldn't say Alex). Suddenly, when I showed him the picture, he wouldn't respond. The books he would have me read over and over again were of no interest to him anymore, and he would find enjoyment staring at a leaf or other non-appropriate toy. My family and friends all told me I worried about nothing, that he was fine. Boys talk later, they would say, or that their son didn't speak until age 5. But I was his mother, and I knew they were wrong. I knew my worst fear was unfolding before my very eyes, and the doubts of those around me only frustrated me more.
An actual diagnosis didn't come until he was age 3 years and 3 months. He speaks very little, still fixates on non-toys, and has terrible temper tantrums. He has typical GI symptoms and disrupted sleep patterns that awaken the entire house at an ungodly hour several times per week. He is in therapy and a special education classroom that has helped somewhat, but he has a long, difficult road to follow.
Is it wrong to say that I do not embrace this disease, that I cannot come to terms with what has happened to my beautiful boy, to be so angry at everyone who has "normal" children? Errands must be run very quickly when Carter is around, babysitters must be chosen very carefully, and a weekend away is a huge burden to ask of my parents, who help him as much, if not more so, than Chris and I. I hate autism. I hate it.
I know he could be a lot worse off. I know he is considered "high functioning" and I should be grateful for that. I'm not grateful though. I dread the last school bell of the day, because I know in one short hour I will have to endure the screaming nightmare of what used to be known as dinner. That going home means flying down the freeway to make sure my dad doesn't have to be with him alone for too long. What kind of mother dreads the end of the work day? What kind of mother am I who at one point couldn't bear to let anyone else even hold him, now can't wait to get away for a couple of days of peace and quiet?
Chris tells me not to give up on him and that we need to do is to keep hoping that he will continue to show progress, but he fails to see why I am struggling to accept what is happening. That I love my son more than anything on this planet, but I miss our lives before this happened to us. The weekends away, the fun trips to the beach with Alex, eating out instead of take out, a normal family dinner, dropping my kid off at the first day of preschool, hearing the words, I love you Mom, play dates, etc. Instead, I am changing size 7 diapers on a boy who might never be able to live alone, and sometimes all the love I have to give doesn't seem to be enough to make life okay.
Well, Carter made his debut on July 25th, 2006. He was a beautiful but fussy baby from the very beginning. I used to poo-poo people who talked about the mother-son bond, but as soon as I held that boy in my arms, I wanted to consume him, have be all mine, and not share him with the world. He was just so perfect, and I was in love. A love that I had never felt before, a love that was part rapture and part possessiveness of this small, perfect, beautiful boy.
Carter started losing language at around 20 months. He used to point to a family picture and just rattle off our names..Mama, Dada, Alice (he couldn't say Alex). Suddenly, when I showed him the picture, he wouldn't respond. The books he would have me read over and over again were of no interest to him anymore, and he would find enjoyment staring at a leaf or other non-appropriate toy. My family and friends all told me I worried about nothing, that he was fine. Boys talk later, they would say, or that their son didn't speak until age 5. But I was his mother, and I knew they were wrong. I knew my worst fear was unfolding before my very eyes, and the doubts of those around me only frustrated me more.
An actual diagnosis didn't come until he was age 3 years and 3 months. He speaks very little, still fixates on non-toys, and has terrible temper tantrums. He has typical GI symptoms and disrupted sleep patterns that awaken the entire house at an ungodly hour several times per week. He is in therapy and a special education classroom that has helped somewhat, but he has a long, difficult road to follow.
Is it wrong to say that I do not embrace this disease, that I cannot come to terms with what has happened to my beautiful boy, to be so angry at everyone who has "normal" children? Errands must be run very quickly when Carter is around, babysitters must be chosen very carefully, and a weekend away is a huge burden to ask of my parents, who help him as much, if not more so, than Chris and I. I hate autism. I hate it.
I know he could be a lot worse off. I know he is considered "high functioning" and I should be grateful for that. I'm not grateful though. I dread the last school bell of the day, because I know in one short hour I will have to endure the screaming nightmare of what used to be known as dinner. That going home means flying down the freeway to make sure my dad doesn't have to be with him alone for too long. What kind of mother dreads the end of the work day? What kind of mother am I who at one point couldn't bear to let anyone else even hold him, now can't wait to get away for a couple of days of peace and quiet?
Chris tells me not to give up on him and that we need to do is to keep hoping that he will continue to show progress, but he fails to see why I am struggling to accept what is happening. That I love my son more than anything on this planet, but I miss our lives before this happened to us. The weekends away, the fun trips to the beach with Alex, eating out instead of take out, a normal family dinner, dropping my kid off at the first day of preschool, hearing the words, I love you Mom, play dates, etc. Instead, I am changing size 7 diapers on a boy who might never be able to live alone, and sometimes all the love I have to give doesn't seem to be enough to make life okay.
Tuesday, May 18, 2010
And what are my student's doing while i am finally updating my blog?
Yes, that's right. I am updating my blog. It's been almost a year since I last put brain to keyboard and typed out something witty and clever to say. But, none the less, here i go. I have spent the last 9 months teaching, that's right, teaching! I am now a Marketing teacher at San Benito High School, and I have been fortunate to teach a great group of 12th graders , minus one or two I can't wait to never see again. We have only 12 days of school left as of today. Actually 12 days and 2 hours, but whose counting?
Personally, 2009 is a year I'd rather forget. First my dear, sweet, brave sister passed away from breast cancer on September 17th, 2010. It was so very hard to watch my once vibrant and active sister fight and finally succumb to this horrible disease. A few weeks later, a diagnosis I have known in my heart for a year prior, finally was put upon my beautiful son. He has autism. All along I had been praying it was a hearing loss, tonsils, ADHD, anything but what I knew to be true. I have had a long, hard road towards acceptance of this, and I won't lie and say that I deal with it gracefully everyday, but I do my best to carry one and hope that through early intervention, speech therapy and the grace of a higher being, he will get better. If it weren't for my parents and my husband, I would have driven myself and my loser cruier off the Port Isabel bridge a long time ago.
So, those are the reasons why I stopped blogging. Today, a sweet friend of mine started her own blog. She is almost married a year with a sweet baby boy on the way, and something about her youthful optimism got me back to the computer, and that is why my students are working on a research paper while I blog! (who am i kidding, i'm sure at least half of them are off task....)
I am also wrestling with a personal decision that is hard to make. Without going into detail, I want to do something for myself as kind of a fresh start, but monetarily it isn't the best time. But, then I think about my sister and wonder, if there ever will be a "right time" and that life is too short to always deny things for yourself that you truly want. So, decisions, decisions, decisions....
Personally, 2009 is a year I'd rather forget. First my dear, sweet, brave sister passed away from breast cancer on September 17th, 2010. It was so very hard to watch my once vibrant and active sister fight and finally succumb to this horrible disease. A few weeks later, a diagnosis I have known in my heart for a year prior, finally was put upon my beautiful son. He has autism. All along I had been praying it was a hearing loss, tonsils, ADHD, anything but what I knew to be true. I have had a long, hard road towards acceptance of this, and I won't lie and say that I deal with it gracefully everyday, but I do my best to carry one and hope that through early intervention, speech therapy and the grace of a higher being, he will get better. If it weren't for my parents and my husband, I would have driven myself and my loser cruier off the Port Isabel bridge a long time ago.
So, those are the reasons why I stopped blogging. Today, a sweet friend of mine started her own blog. She is almost married a year with a sweet baby boy on the way, and something about her youthful optimism got me back to the computer, and that is why my students are working on a research paper while I blog! (who am i kidding, i'm sure at least half of them are off task....)
I am also wrestling with a personal decision that is hard to make. Without going into detail, I want to do something for myself as kind of a fresh start, but monetarily it isn't the best time. But, then I think about my sister and wonder, if there ever will be a "right time" and that life is too short to always deny things for yourself that you truly want. So, decisions, decisions, decisions....
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