We just came home from a wonderful week-long family vacation, I jumped online to check e-mails and noticed that Aidan has been assigned a kindergarten teacher. I went to her website and started printing out forms for the year and was shocked to see what they expect him to do this year. He is nowhere near ANY of the items on the list.
He's supposed to read a book weekly and either write a sentence or draw a picture about the book? (He is still holding a marker with an immature grasp and it is like pulling teeth to get him to make a mark on the page).
He's supposed to learn sight words, start math concepts, do a daily classroom chore (calender, weather), zoophonics, and centers, etc.. It just makes me realize that this is just beginning. His whole school experience. The teasing, frustration, the realization that he is not 'normal' and that he never will be.
I know what you are going to say - you are going to say what is 'normal?', that he is a beautiful person who is a joy. But you well know that elementary, middle and high school kids are mean, and they just don't get it.
Why did he have to have Dup15q? Why does he have to have autism? I hate the fact that he is going to have such a hard life. HAS HAD a hard life. I don't want to do this anymore...
Saturday, July 23, 2011
Monday, February 21, 2011
Running scared
Tonight, just before I left for work I read a story on the 9news website. It was about a 3 year-old little boy who got away from his grandmother (who was his legal guardian) and drowned in a pond behind their house. It turns out this little boy had autism. While I read this, I could feel my head starting to spin and the color drain out of my face.
This is my worst nightmare. This could have been Aidan.
Aidan is so fascinated with water that when we were in Vail last June, when the rivers were running so fast and so high with spring runoff that the kayakers were banned from going in the river during the Teva games, he was trying to climb over the guard rail to get in the water. I had a grip on him so tight that I'm sure I left marks, and yet he was fighting me tooth and nail to get in.
He has no sense of danger and has no fear. A deadly combination that scared the hell out of me last spring, and made it so I couldn't sleep tonight. Which is why I am sitting here typing this at 2am...
I am thinking about all of the known dangers (like running into a raging river, or stepping off of a roof), but also of all of the unknown danger as well. I know we can't protect our kids from everything in the world, but what about the kids who don't know any better?
What about the kids who get talked into things - dangerous things - by other kids who think it is funny? What about losing sight of him for that second, and he is gone forever?
It's just another facet in this hand we were dealt with. Just another issue on the table. But God, please watch over our precious boy and protect him from the things that he doesn't know can hurt him.
This is my worst nightmare. This could have been Aidan.
Aidan is so fascinated with water that when we were in Vail last June, when the rivers were running so fast and so high with spring runoff that the kayakers were banned from going in the river during the Teva games, he was trying to climb over the guard rail to get in the water. I had a grip on him so tight that I'm sure I left marks, and yet he was fighting me tooth and nail to get in.
He has no sense of danger and has no fear. A deadly combination that scared the hell out of me last spring, and made it so I couldn't sleep tonight. Which is why I am sitting here typing this at 2am...
I am thinking about all of the known dangers (like running into a raging river, or stepping off of a roof), but also of all of the unknown danger as well. I know we can't protect our kids from everything in the world, but what about the kids who don't know any better?
What about the kids who get talked into things - dangerous things - by other kids who think it is funny? What about losing sight of him for that second, and he is gone forever?
It's just another facet in this hand we were dealt with. Just another issue on the table. But God, please watch over our precious boy and protect him from the things that he doesn't know can hurt him.
Monday, January 3, 2011
Opposites
I said that I was going to use this space to get it all out, the ups and downs, ins and outs. I haven't done that - so get ready, because here it comes...
I feel like I am living in a body with two different people. One optimistic and grateful and the other hopelessly depressed and pessimistic.
On one side I love my sweet little boy who is so mild mannered and sweet; who has the face of an angel. He has come so far from where we began - running, "singing", trying so desperately to make his words understood. One who realizes he has power by taking our hand and showing us what he wants. This little boy who we thought would never walk is now jumping independently on his new trampoline. The trampoline that made him squeal with delight on Christmas morning. He is able to feed himself (with supervision) and can now turn on the faucet and grab a dixie cup and get himself a drink. He is the little boy who is so proud of himself for being able to walk up and down the stairs on his own - secretly while we are not paying attention.
I also have a great paying job at a time where many don't have a job at all. A job where a lot of the time is spent talking with my co-workers, doing crossword puzzles, or keeping up with the news on the web.
I have a beautiful house (which may need a little work) that we have made into our home. The basement therapy room where Aidan has done so much work is now perfect. The yard with the flowers and deck for enjoying the seasons. Away from the bustle of the city.
I have the most amazing husband, whose sense of humor makes me laugh more than I thought and longer than I thought (18+ years) I ever could. I love him with all of my heart and am so lucky to have him.
I have a supportive family, who may not always know how to help, but is always there when I ask.
So what the hell is my problem????
I have this other person inside of me. The dark one who never lets me forget what I am missing, what I will never have.
My beautiful son, who is now upstairs sleeping so peacefully, is living in a world I try desperately to understand, but will never know. As I write, my face, hands, and neck are scratched raw and bleeding from his quick and violent pinches. Even as he was asleep, he reached out and grabbed my face for one more. He seems to know that if he moves his fingers in such a way, he can inflict more damage and get my attention. If he doesn't get the reaction he wants, he tries again. And again.
Our Christmas was a little more normal, but is still light years from what it should be. Well meaning co-workers as the perfunctory question "How was your Christmas?" and I have to take a deep breath an say "Great!". I listen to the stories of how their children put together lists of things they want. Does Aidan even want things? Does he even know that things are out there to want? We are considering not doing the Santa thing at all since people with autism have a hard time with abstract things. Damn you autism! I would have been great at Christmas, the Easter Bunny, the Tooth Fairy...
It has taken the joy out of the holidays. I mean, what is the point?
My job is a job, nothing more. I occasionally think about going back to veterinary medicine to give me some sense of usefulness. But there still isn't any way I can fathom dealing with that world and the world I am currently living in. Overloaded just thinking about it. Plus, I am making more money now than I ever would starting over as a tech. I have also given up on the idea of going back to school and getting my biology degree and doing the GIS thing. Nuts. I would have been great at that too.
We are in so much debt it's almost laughable. Almost. We have 1 1/2 more years of being on the autism waiver and we are going to try to make a dent in it so we have some credit left to spend for when it ends. If we don't, we are in serious trouble.
I still love Robert. We are doing the best we can, but are both still a little checked out. It is hard, having a child who is there and yet who is not. It affects every moment and every thought, of every day.
I feel I could be doing so much more. I sit on the computer more than I should. I should be downstairs doing Son-Rise, going out and getting more volunteers, so Aidan is engaged as much as possible. I don't know if I am scared to try as hard as possible and still fail...
It's that dark side of me that whispers, "No matter what, it is and always will be your fault. Your son always was, and always will be autistic."
I am so scared for what the future holds for him. I watched a ABC show on autistic adults. Ones who have a job, who live in a group home. It was so depressing, to see these people who are considered successes on the autism scale. I wanted so much more for my son.
I have been depressed most of my life. I have always wondered why we have to live such painful lives. Now I have to live with the guilt of bringing in another life, just to suffer, just to die.
I told you this wouldn't be pretty. But this is my life. This is what is going on day in and day out.
I feel so lonely and yet I want to run away and live in seclusion, away from everything.
But that sweet little boy, upstairs sleeping, needs me (at least I like to think he does)...
I feel like I am living in a body with two different people. One optimistic and grateful and the other hopelessly depressed and pessimistic.
On one side I love my sweet little boy who is so mild mannered and sweet; who has the face of an angel. He has come so far from where we began - running, "singing", trying so desperately to make his words understood. One who realizes he has power by taking our hand and showing us what he wants. This little boy who we thought would never walk is now jumping independently on his new trampoline. The trampoline that made him squeal with delight on Christmas morning. He is able to feed himself (with supervision) and can now turn on the faucet and grab a dixie cup and get himself a drink. He is the little boy who is so proud of himself for being able to walk up and down the stairs on his own - secretly while we are not paying attention.
I also have a great paying job at a time where many don't have a job at all. A job where a lot of the time is spent talking with my co-workers, doing crossword puzzles, or keeping up with the news on the web.
I have a beautiful house (which may need a little work) that we have made into our home. The basement therapy room where Aidan has done so much work is now perfect. The yard with the flowers and deck for enjoying the seasons. Away from the bustle of the city.
I have the most amazing husband, whose sense of humor makes me laugh more than I thought and longer than I thought (18+ years) I ever could. I love him with all of my heart and am so lucky to have him.
I have a supportive family, who may not always know how to help, but is always there when I ask.
So what the hell is my problem????
I have this other person inside of me. The dark one who never lets me forget what I am missing, what I will never have.
My beautiful son, who is now upstairs sleeping so peacefully, is living in a world I try desperately to understand, but will never know. As I write, my face, hands, and neck are scratched raw and bleeding from his quick and violent pinches. Even as he was asleep, he reached out and grabbed my face for one more. He seems to know that if he moves his fingers in such a way, he can inflict more damage and get my attention. If he doesn't get the reaction he wants, he tries again. And again.
Our Christmas was a little more normal, but is still light years from what it should be. Well meaning co-workers as the perfunctory question "How was your Christmas?" and I have to take a deep breath an say "Great!". I listen to the stories of how their children put together lists of things they want. Does Aidan even want things? Does he even know that things are out there to want? We are considering not doing the Santa thing at all since people with autism have a hard time with abstract things. Damn you autism! I would have been great at Christmas, the Easter Bunny, the Tooth Fairy...
It has taken the joy out of the holidays. I mean, what is the point?
My job is a job, nothing more. I occasionally think about going back to veterinary medicine to give me some sense of usefulness. But there still isn't any way I can fathom dealing with that world and the world I am currently living in. Overloaded just thinking about it. Plus, I am making more money now than I ever would starting over as a tech. I have also given up on the idea of going back to school and getting my biology degree and doing the GIS thing. Nuts. I would have been great at that too.
We are in so much debt it's almost laughable. Almost. We have 1 1/2 more years of being on the autism waiver and we are going to try to make a dent in it so we have some credit left to spend for when it ends. If we don't, we are in serious trouble.
I still love Robert. We are doing the best we can, but are both still a little checked out. It is hard, having a child who is there and yet who is not. It affects every moment and every thought, of every day.
I feel I could be doing so much more. I sit on the computer more than I should. I should be downstairs doing Son-Rise, going out and getting more volunteers, so Aidan is engaged as much as possible. I don't know if I am scared to try as hard as possible and still fail...
It's that dark side of me that whispers, "No matter what, it is and always will be your fault. Your son always was, and always will be autistic."
I am so scared for what the future holds for him. I watched a ABC show on autistic adults. Ones who have a job, who live in a group home. It was so depressing, to see these people who are considered successes on the autism scale. I wanted so much more for my son.
I have been depressed most of my life. I have always wondered why we have to live such painful lives. Now I have to live with the guilt of bringing in another life, just to suffer, just to die.
I told you this wouldn't be pretty. But this is my life. This is what is going on day in and day out.
I feel so lonely and yet I want to run away and live in seclusion, away from everything.
But that sweet little boy, upstairs sleeping, needs me (at least I like to think he does)...
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