My husband just turned 40 years old, and as a birthday present to him, I threw a surprise party at a local family restaurant. My husband is not big on parties, or having attention drawn to himself, so I knew that I really had to keep the plans pretty low key. I only invited his very closest friends, and family members that we spend a lot of time with. He has many, many friends and co-workers, and his family is enormous, so planning the guest list was a challenge. Those who we visit with on a regular basis, those who we tailgate at football, or go to ball games, those who he golfs with, and those who we spend all our holidays with, they were invited. My husband, however, is a police officer, so he is very......shall we call it, nosy? Part of his ingrained personality is to know everything that is going on at all times, so pulling off a surprise was a tall order. The first rule I had to follow to make this happen was DONT TELL KATIE! Katie cannot keep a secret if all her Doritos depended on it.
I have tried, in the past, to entrust Katie with various secrets. Sometimes she finds things out on accident, and I have to beg her to not tell, like presents for her sisters or special vacation plans. When she knows something, however, her face will give her away. If the secret is about you, as soon as she sees you, she will start giggling. Then she will say, "I can't tell you something!", or "I have a secret!" Half the time just saying that gets suspictions arose enough to spoil the fun. Occasionally she will flat out blurt what she is supposed to be concealing. Just blurt it right out, and start cracking up. It would be hilarious if it wasn't so frustrating. I had to use a lot of stealth and secrets around her to make the plans more fun.
I enlisted the help of my oldest daughter to help me plan and execute the party. I asked her opinion on the cake, the location, and the decorations, and sent her with my parents to set up and greet the guests who arrived before us. My youngest daughter (who also didn't know about the party) and Katie were to go with my husband and I up to the restaurant, under the pretense of meeting my parents for dinner. I was so nervous all day, and I thought that my face or my nervous actions would give me away or make everyone suspicious. Everything was going smoothly until we were just about to leave for the party. Katie decided that she wanted to wear sweatpants! Katie always loves to dress up, and she comes up with the craziest outfits, usually involving skirts and flipflops. I therefore expected her to be excited about dressing up pretty. My parents are the type of people that dress up to go out to eat, so I tried telling Katie that they would be dressed up too. She told me, "grandma won't mind if I am wearing sweatpants." I finally talked her into dressing up, and we left for the party.
When we arrived, the waitress (who was in on the plan), led us to the back room. As the doors opened, and all of our family and friends yelled, "Surprise!", Katie was out of her mind. I could not have paid a million dollars for her reaction. She was laughing and jumping up and down and giggling. Then she turned to me and said, "MOM! You did this!" She kept pointing at me throughout the night, and saying I surprised her, I fooled her, I kept a secret. Later, after talking with all of our guests, the group consensus was that even though the party was for my husband, it was Katie's party. She went around the room, hugging everyone, talking to everyone, laughing with everyone. She loved the cake, loved the balloons, loved the food, loved the company, and especially loved the suprise.
We are a simple family. We like to spend Sundays together, we eat dinner at the kitchen table every night that we can. We say our prayers and call our grandmas and take vacations to Disney. We don't have a lot of money, but we are comfortable. We spend a lot of time laughing, and wrestling on the living room floor. I don't know if Autism made our family closer. I don't know if Autism made us appreciate the little things in life, like surprise parties and pajama Saturdays. I don't know if Autism made us love each other any more, or if it brought us closer together. I just know that any time I see that look on Katie's face, when she is giggling and out of her mind excited, I know that any time she says something funny, I can look over at my husband, and he will look at me. We don't even have to say anything, we both know. Our Adventures in Autism have brought us more laughter and giggles and secret smiles than I could ever begin to tell you about. I am glad that my husband shared his surprise party with Katie, because even though the party was about him, and for him, it was the highlight of Katie's life.
Monday, March 18, 2013
Monday, March 4, 2013
It's Not Fair
"It's not fair!" How many times a day do you hear this? It's not fair that I have to clean my room, it's not fair that I can't stay up late, it's not fair that I have to eat my vegetables. There are so many things that children find are not fair, and a million reasons why. Sometimes it's not fair because their friends can do it (or don't have to do it), or that their friends have it (or don't have to have it). Other times it is because their siblings are allowed but they are not. But, like most parents, I often hear that things are not fair when fairness isn't even part of the equation, it is just thrown in there for arguments sake.
I have 3 daughters and 2 are teenagers, so I get extra helping of "it's not fair". I will start with my oldest daughter. She is smack right in the middle of her teens, and loves to test the waters of arguing and complaining, trying to see just how far she can push. I know this is normal and expected and I have every intention of not taking it personally. But if I stop to look at her life, it really is not fair. It is not fair that she had to spend so much time as a small child being shuttled from one place to the next while we were having Katie tested, and then later spending endless amounts of time in various doctors offices. It isn't fair that Katie has no sense of boundries and will walk into her room at any point and get into all her things. It isn't fair that she will never share those teen moments with her sister, like giggling about boys, or shopping for clothes, or hanging out watching teen movies, reading magazines or riding their bikes to McDonalds for a french fry. It is not fair that already she has accepted the responsiblity of caring for Katie should something happen to me or my husband. She was never asked, never expected to, she just informed me that she would. It is not fair that at 7 years old she had to defend her sister from a friend who was making fun of Katie, then defend herself further when they said she was lying. It is not fair that many times she has to babysit Katie, when a 13 year old should be able to watch herself.
I don't know where to begin to list what is not fair for Katie. It is not fair that she will never drive a car. It is not fair that she will never be able to live on her own. It is not fair that she will never marry or have children. It is not fair that people who say that they are her friends make excuses to not spend time with her. It is not fair that people use her as a charity case, a poster child, or act like they are so involved with her life when they really have no idea what her life is about. It is not fair that, while she cares so very very much for some people, that they do not even simply acknowledge her, even on her birthday.
My youngest daughter has never known life before Autism, which is not fair. It is not fair that she has never had a single day in her life when Autism hasn't had some affect. It is not fair that she has to share her room with Katie, who talks to her "friends" for about 2 hours every night at bedtime. It is not fair that Katie is always at home when her friends come over, wanting to hang out with them, trying to fit in. It is not fair that she has to leave family parties, or playgrounds, or picnics because Katie was having a meltdown. It is not fair that she has to do more chores because Katie is physically unable to do them, and it's not fair that she has to go to bed so early. It is the most unfair that her friends have told her to tell Katie to leave them alone at a birthday party, when Katie was simply standing behind them, enjoying watching all the kids having fun. I think out of everyone affected by Katie, my youngest has been the most embarrassed by her, and that is not fair. I understand the embarrassment, and I do not fault her for feeling that way. It is a natural response, and I would probably feel the same way if I was her age. It is not fair that she has those conflicting emotions, because she loves Katie very much, and I am sure feels guilty about the embarrassment.
It is not fair to my husband and me that we will never have an empty nest. We will always have Katie at home with us, and always have to worry about her schooling, health, entertainment, and safety. Any plans that we make will have to factor her in. It is not fair that every time I see sisters sharing an intimate moment, I cry a little because I wish that my girls could have that kind of relationship. It is not fair that I have been writing this blog to help other people, and I have been writing this blog as an outlet for all the thoughts and feelings that Autism brings up, and people have read my blog and thrown it back in my face as attacking them or condeming them or judging them.
I think the thing that is the most unfair is that more people are not like Katie. Katie loves people for who they are inside, and she loves them for how they treat her. If you treat her right, she will fall in love with you immediately, and then she will love you forever. I have never seen her get mad at anyone, ever, other than her father and I, and that wasn't really "mad", but more like a temper tantrum. It is not fair that everyone doesn't have a child like Katie, who has taught me more about life, and priorities, and God, and faith, and laughter, and innocence, and fun. It is not fair that some people will read all this and judge me and think that I am complaining, or question my love and devotion. When I catch myself in that moment where I am picturing what life would be like without Autism, I have a hard time doing it. That life would not include Katie, so that is not a life that I want. But life isn't about what is fair and not fair. Everyone is not given the same opportunities, or challenges. All I can do is make sure that my daughters, my family, come through these Adventures in Autism as better people, loving each other, loving God, loving family, and loving life. That will be a fair trade off.
I have 3 daughters and 2 are teenagers, so I get extra helping of "it's not fair". I will start with my oldest daughter. She is smack right in the middle of her teens, and loves to test the waters of arguing and complaining, trying to see just how far she can push. I know this is normal and expected and I have every intention of not taking it personally. But if I stop to look at her life, it really is not fair. It is not fair that she had to spend so much time as a small child being shuttled from one place to the next while we were having Katie tested, and then later spending endless amounts of time in various doctors offices. It isn't fair that Katie has no sense of boundries and will walk into her room at any point and get into all her things. It isn't fair that she will never share those teen moments with her sister, like giggling about boys, or shopping for clothes, or hanging out watching teen movies, reading magazines or riding their bikes to McDonalds for a french fry. It is not fair that already she has accepted the responsiblity of caring for Katie should something happen to me or my husband. She was never asked, never expected to, she just informed me that she would. It is not fair that at 7 years old she had to defend her sister from a friend who was making fun of Katie, then defend herself further when they said she was lying. It is not fair that many times she has to babysit Katie, when a 13 year old should be able to watch herself.
I don't know where to begin to list what is not fair for Katie. It is not fair that she will never drive a car. It is not fair that she will never be able to live on her own. It is not fair that she will never marry or have children. It is not fair that people who say that they are her friends make excuses to not spend time with her. It is not fair that people use her as a charity case, a poster child, or act like they are so involved with her life when they really have no idea what her life is about. It is not fair that, while she cares so very very much for some people, that they do not even simply acknowledge her, even on her birthday.
My youngest daughter has never known life before Autism, which is not fair. It is not fair that she has never had a single day in her life when Autism hasn't had some affect. It is not fair that she has to share her room with Katie, who talks to her "friends" for about 2 hours every night at bedtime. It is not fair that Katie is always at home when her friends come over, wanting to hang out with them, trying to fit in. It is not fair that she has to leave family parties, or playgrounds, or picnics because Katie was having a meltdown. It is not fair that she has to do more chores because Katie is physically unable to do them, and it's not fair that she has to go to bed so early. It is the most unfair that her friends have told her to tell Katie to leave them alone at a birthday party, when Katie was simply standing behind them, enjoying watching all the kids having fun. I think out of everyone affected by Katie, my youngest has been the most embarrassed by her, and that is not fair. I understand the embarrassment, and I do not fault her for feeling that way. It is a natural response, and I would probably feel the same way if I was her age. It is not fair that she has those conflicting emotions, because she loves Katie very much, and I am sure feels guilty about the embarrassment.
It is not fair to my husband and me that we will never have an empty nest. We will always have Katie at home with us, and always have to worry about her schooling, health, entertainment, and safety. Any plans that we make will have to factor her in. It is not fair that every time I see sisters sharing an intimate moment, I cry a little because I wish that my girls could have that kind of relationship. It is not fair that I have been writing this blog to help other people, and I have been writing this blog as an outlet for all the thoughts and feelings that Autism brings up, and people have read my blog and thrown it back in my face as attacking them or condeming them or judging them.
I think the thing that is the most unfair is that more people are not like Katie. Katie loves people for who they are inside, and she loves them for how they treat her. If you treat her right, she will fall in love with you immediately, and then she will love you forever. I have never seen her get mad at anyone, ever, other than her father and I, and that wasn't really "mad", but more like a temper tantrum. It is not fair that everyone doesn't have a child like Katie, who has taught me more about life, and priorities, and God, and faith, and laughter, and innocence, and fun. It is not fair that some people will read all this and judge me and think that I am complaining, or question my love and devotion. When I catch myself in that moment where I am picturing what life would be like without Autism, I have a hard time doing it. That life would not include Katie, so that is not a life that I want. But life isn't about what is fair and not fair. Everyone is not given the same opportunities, or challenges. All I can do is make sure that my daughters, my family, come through these Adventures in Autism as better people, loving each other, loving God, loving family, and loving life. That will be a fair trade off.
Wednesday, February 27, 2013
The Longest Hour
We arrived at the doctors office an hour early. It was partly my fault, hoping that we could sneak in a few minutes before our appointment; and partly my fault for not realizing our doctor didn't even begin seeing patients until our scheduled time. Since I had assumed (and hoped) that we would "get in and get out", I did not properly plan. I did not bring snacks, I did not bring an I-Pod, and I did not bring anything for Katie to do. Nothing for her to do FOR AN HOUR. I am shuddering just thinking about the enormity of that mistake. That is like going to the desert without a bottle of water. Like packing two pair of shorts for a week long trip to Alaska. It is not only unwise, but it is uncomfortable. I have had Katie in my life for 13 years now, I should know better. I should always know to bring too much stuff, too much food, always, always, always. I have been burned by this before, you would think I would know better.
The foolishness of the situtation sunk in pretty quickly. Although the waiting room was spacious, that also helped to magnify Katie's voice. Katie has 2 volumes to her voice. Not talking, and LOUD. No matter how many times you ask her to lower her voice, use her inside voice or whisper, she always talks loudly. Now, if Katie has nothing to do, she is going to want to talk. And when she talks, there is no guarantee what she is going to say. In a loud ringing voice. She does not always have a filter for inappropriate conversation. And if I don't talk to her, she is going to start talking to her pretend friends. This day, however, she chose to talk to me. And ask me questions. Random questions. Question after question after question. It was a very long hour.
The next thing Katie decided to do was poke my face. First she started by staring at me. And telling me I had wrinkles. And a gray hair. And a bump on my forehead. Then she pulled on my ears to see if they were clean. Then she practically climbed on my lap to look in my eyes. "You have blue eyes, mom." That set off a whole 'nother round of questions and comments about my eye color, her eye color, her sisters' eye color, and her dad's eye color. After pulling my hair in a make-shift ponytail, she had to ask more questions about my hair. Was I going to let it grow long again, why was it a different color brown than hers, why did her sister have red hair, etc. I looked up at the clock, and about 5 minutes had past.
I bet there is a mom out there with a toddler that is reading this and thinking, "that sounds familiar". My problem is that Katie is not a toddler. She is as tall as I am, and almost weighs as much. So when she is jumping on my lap and pulling my face around to hers, it is a little different. It is also different because people in society expect that from a toddler, not from a grown teenager. Don't get me wrong, I don't care very much about what strangers in public think about Katie, but it does add to the tension and stress and anxiety level when they are shooting us looks.
I will be the first to admit, I am a freak about time. I hate to be late for anything, which usually means I am way too early. I am fine with this, I know this about myself. My whole point of going a little early to the doctors was because we had a jammed packed day, and I wasn't sure how I was going to squeeze everything in. It was not my fault that my schedule was so crazy, plans kept getting changed by others that I had no control over. To alleviate some of the stress, I thought we could get in a little early to see the doctor, but as time went on as we were waiting in the lobby, my anxiety grew and grew. My inner crazy was climbing the walls. But on top of all my own "time management crazy" stress, Katie acting like a toddler was only making it worse. When I am stressed out, the littlest things just grate on my nerves. Normally if Katie is poking and prodding at me, I will just laugh and play with her. But when I am stressing, it is like nails on a chalkboard. The only thing that kept me in that waiting room was the fact that if Katie didn't get seen by the doctor that day, she would't get her medicine prescription. And no one wants to see that!
I think that I have a lor of patience with Katie. I probably have more patience with her than anyone else does. I know how to handle her mood swings, how to calm her hysterics, how to talk her out of her tizzies. But there always comes a situation, from time to time, that just tries me. Makes me feel like a pressure cooker that has been steaming all day long, just ready to bust. My problem with the doctors office situation was that I had no out. No options, no relief that I had control over. I HAD to stay there. I HAD to wait for the doctor to arrive at the time that they chose to arrive. I HAD to remain calm and cool and not yell or get upset or frustrated, because that would only make matters worse. I HAD to entertain Katie because I didn't bring her anything else to do. This whole stituation could have been prevented. I could have arrived closer to my appointment time. I could have taken the time to pack a bag with snacks, and things to do, especially her I-Pod. I guess this is just one of those Adventures in Autism that I will never forget, for the lessons it taught me. Lessons that I should have already known and planned for. Life is never a sure thing. A plan is only a plan, never a done deal. Always over-pack, over-think, over-expect things to go wrong and know how you are going to handle them when they do. This was all my fault, and I feel bad for getting frustrated with Katie when she only acted exactly how I should have expected her to act when faced with this scenerio. That was just about the longest hour of my life.
The foolishness of the situtation sunk in pretty quickly. Although the waiting room was spacious, that also helped to magnify Katie's voice. Katie has 2 volumes to her voice. Not talking, and LOUD. No matter how many times you ask her to lower her voice, use her inside voice or whisper, she always talks loudly. Now, if Katie has nothing to do, she is going to want to talk. And when she talks, there is no guarantee what she is going to say. In a loud ringing voice. She does not always have a filter for inappropriate conversation. And if I don't talk to her, she is going to start talking to her pretend friends. This day, however, she chose to talk to me. And ask me questions. Random questions. Question after question after question. It was a very long hour.
The next thing Katie decided to do was poke my face. First she started by staring at me. And telling me I had wrinkles. And a gray hair. And a bump on my forehead. Then she pulled on my ears to see if they were clean. Then she practically climbed on my lap to look in my eyes. "You have blue eyes, mom." That set off a whole 'nother round of questions and comments about my eye color, her eye color, her sisters' eye color, and her dad's eye color. After pulling my hair in a make-shift ponytail, she had to ask more questions about my hair. Was I going to let it grow long again, why was it a different color brown than hers, why did her sister have red hair, etc. I looked up at the clock, and about 5 minutes had past.
I bet there is a mom out there with a toddler that is reading this and thinking, "that sounds familiar". My problem is that Katie is not a toddler. She is as tall as I am, and almost weighs as much. So when she is jumping on my lap and pulling my face around to hers, it is a little different. It is also different because people in society expect that from a toddler, not from a grown teenager. Don't get me wrong, I don't care very much about what strangers in public think about Katie, but it does add to the tension and stress and anxiety level when they are shooting us looks.
I will be the first to admit, I am a freak about time. I hate to be late for anything, which usually means I am way too early. I am fine with this, I know this about myself. My whole point of going a little early to the doctors was because we had a jammed packed day, and I wasn't sure how I was going to squeeze everything in. It was not my fault that my schedule was so crazy, plans kept getting changed by others that I had no control over. To alleviate some of the stress, I thought we could get in a little early to see the doctor, but as time went on as we were waiting in the lobby, my anxiety grew and grew. My inner crazy was climbing the walls. But on top of all my own "time management crazy" stress, Katie acting like a toddler was only making it worse. When I am stressed out, the littlest things just grate on my nerves. Normally if Katie is poking and prodding at me, I will just laugh and play with her. But when I am stressing, it is like nails on a chalkboard. The only thing that kept me in that waiting room was the fact that if Katie didn't get seen by the doctor that day, she would't get her medicine prescription. And no one wants to see that!
I think that I have a lor of patience with Katie. I probably have more patience with her than anyone else does. I know how to handle her mood swings, how to calm her hysterics, how to talk her out of her tizzies. But there always comes a situation, from time to time, that just tries me. Makes me feel like a pressure cooker that has been steaming all day long, just ready to bust. My problem with the doctors office situation was that I had no out. No options, no relief that I had control over. I HAD to stay there. I HAD to wait for the doctor to arrive at the time that they chose to arrive. I HAD to remain calm and cool and not yell or get upset or frustrated, because that would only make matters worse. I HAD to entertain Katie because I didn't bring her anything else to do. This whole stituation could have been prevented. I could have arrived closer to my appointment time. I could have taken the time to pack a bag with snacks, and things to do, especially her I-Pod. I guess this is just one of those Adventures in Autism that I will never forget, for the lessons it taught me. Lessons that I should have already known and planned for. Life is never a sure thing. A plan is only a plan, never a done deal. Always over-pack, over-think, over-expect things to go wrong and know how you are going to handle them when they do. This was all my fault, and I feel bad for getting frustrated with Katie when she only acted exactly how I should have expected her to act when faced with this scenerio. That was just about the longest hour of my life.
Monday, February 11, 2013
The New Normal
When you map out your life, your plans and your hopes and your dreams, you follow the path that will lead you where you want to go. Or you try to follow the path anyway. When life events interfere, for the good or for the bad, you obviously have to alter that path. Life events of all sorts can completely derail your train. Births, deaths, jobs, illness, whatever happens to come up, you deal with it and make the necessary adjustments to get back on track. Sometimes all it takes is a little tweak here and there, create a little wiggle room. Sometimes it is so enormous that your life will never be the same.
Life for me as a young adult was pretty simple. College, marriage, job, children. Visit the grandparents, church, special holidays, vacations. We lived a simple life, a happy life. When we had our first daughter, we made the changes we needed to make to create room for her, to incorporate her into our world. Parents do these things every day. Life gets a little more hectic, priorities shift, and then things settle down. Eventually you settle into a normal routine, a normal schedule, a normal family life. When we found out we were expecting another daughter, I figured we would just have to make a little more wiggle room, juggle a little bit more to make the adjustments. And then came Katie.
Katie, Katie, Katie. Katie was an easy baby, Katie was a happy baby. Our lives didn't get this complicated until we started having Katie evaluated for various reasons, and 6 months into the journey, a school assistant first said the word "Autism" to us. No one had ever mentioned it before. Katie did not have the "typical" Autistic habits or difficulties or quirks or mannerisms, or whatever you want to call the "things" that make people think your child is Autistic. But after having her tested and evaluted, she was given the label. The autistic "things" came later. But now here we were, handed the news that our 2 1/2 year old was Autistic. What do you do with that? How do you figure that into the path that you are following? How do you make that fit into your lifestyle? And, not to mention, at the time of Katie's diagnosis, I had another baby on the way.
Our normal life suddenly wasn't so normal anymore. Our "fairytale, highschool sweethearts grow up and get married and have kids and live happily ever after" story suddenly looked like it was going to have a very different ending. Not only a different ending, but a different middle too. The story started out the same, but suddenly it's going in a very different direction. The weird thing about it was that nothing with Katie had changed. She was the same beautiful, happy, sweet tempered girl from the one day before her diagnosis, that she was after we got the news. She wasn't different at all. But LIFE had changed in that instant. Our future, her future, was suddenly very very hard to see. What did this mean? What do we do? How is this going to play out? What is a normal life for us now?
Looking back on those early years, I am not really sure how we got through them. A lot of those times are foggy; not the life events, but what I was thinking or how I was coping. We had to create a "new normal". We had to make room for doctors visits, and testing, and occupational therapists, and social workers, and speech pathologists, and fighting with insurance, and trying to explain to everyone what is going on with Katie, and new fears, and new uncertainties, and now suddenly everyone is calling me because they know someone who has Autism and they want me to talk to them. That became our new normal. My youngest daughter never knew life before Autism came, because she was born into the midst of it. My oldest daughter probably doesn't remember what life was like before because she was only 5 when Katie was diagnosed. The life that they live now is the only normal they know. They know tantrums and imaginary friends and food obsessions and talking all night and speech difficulties and leaving places early and singing loudly in church and brutal honesty and unconditional love. That is the only normal that they know.
The "new normal" has to have a different middle, and a different ending to the story. It is not as easy to imagine how our lives will be end up now. It is so much harder to dream of how our stories will read. Katie is so different now than she was as a small girl, and a world different from how she was in elementary school. After her diagnosis, I tried to dream some new dreams for her, and she has already far surpassed them. I guess it sounds silly saying "my dreams" for Katie, but I cannot see my life without her being a daily part of it, so our dreams get tightly wrapped up together. Our Adventures in Autism will lead us down a new path, and we will find out what our "new normal" is, together.
Life for me as a young adult was pretty simple. College, marriage, job, children. Visit the grandparents, church, special holidays, vacations. We lived a simple life, a happy life. When we had our first daughter, we made the changes we needed to make to create room for her, to incorporate her into our world. Parents do these things every day. Life gets a little more hectic, priorities shift, and then things settle down. Eventually you settle into a normal routine, a normal schedule, a normal family life. When we found out we were expecting another daughter, I figured we would just have to make a little more wiggle room, juggle a little bit more to make the adjustments. And then came Katie.
Katie, Katie, Katie. Katie was an easy baby, Katie was a happy baby. Our lives didn't get this complicated until we started having Katie evaluated for various reasons, and 6 months into the journey, a school assistant first said the word "Autism" to us. No one had ever mentioned it before. Katie did not have the "typical" Autistic habits or difficulties or quirks or mannerisms, or whatever you want to call the "things" that make people think your child is Autistic. But after having her tested and evaluted, she was given the label. The autistic "things" came later. But now here we were, handed the news that our 2 1/2 year old was Autistic. What do you do with that? How do you figure that into the path that you are following? How do you make that fit into your lifestyle? And, not to mention, at the time of Katie's diagnosis, I had another baby on the way.
Our normal life suddenly wasn't so normal anymore. Our "fairytale, highschool sweethearts grow up and get married and have kids and live happily ever after" story suddenly looked like it was going to have a very different ending. Not only a different ending, but a different middle too. The story started out the same, but suddenly it's going in a very different direction. The weird thing about it was that nothing with Katie had changed. She was the same beautiful, happy, sweet tempered girl from the one day before her diagnosis, that she was after we got the news. She wasn't different at all. But LIFE had changed in that instant. Our future, her future, was suddenly very very hard to see. What did this mean? What do we do? How is this going to play out? What is a normal life for us now?
Looking back on those early years, I am not really sure how we got through them. A lot of those times are foggy; not the life events, but what I was thinking or how I was coping. We had to create a "new normal". We had to make room for doctors visits, and testing, and occupational therapists, and social workers, and speech pathologists, and fighting with insurance, and trying to explain to everyone what is going on with Katie, and new fears, and new uncertainties, and now suddenly everyone is calling me because they know someone who has Autism and they want me to talk to them. That became our new normal. My youngest daughter never knew life before Autism came, because she was born into the midst of it. My oldest daughter probably doesn't remember what life was like before because she was only 5 when Katie was diagnosed. The life that they live now is the only normal they know. They know tantrums and imaginary friends and food obsessions and talking all night and speech difficulties and leaving places early and singing loudly in church and brutal honesty and unconditional love. That is the only normal that they know.
The "new normal" has to have a different middle, and a different ending to the story. It is not as easy to imagine how our lives will be end up now. It is so much harder to dream of how our stories will read. Katie is so different now than she was as a small girl, and a world different from how she was in elementary school. After her diagnosis, I tried to dream some new dreams for her, and she has already far surpassed them. I guess it sounds silly saying "my dreams" for Katie, but I cannot see my life without her being a daily part of it, so our dreams get tightly wrapped up together. Our Adventures in Autism will lead us down a new path, and we will find out what our "new normal" is, together.
Friday, January 11, 2013
Parenthood
I am just going to come right out and say it. I am just going to lay it out there. Parents that do not have children with special needs have NO idea what "we" are going through. I don't say that to be mean or spitefull. I don't say that to be inclusive, or cliquey or to even mean that life is so much harder for us. Everyone, even those with regular kids, everyone has their cross to bear. Everyone is busy, everyone has problems, everyone has their bad days. But the day to day struggles, the constant agonizing worry, their uncertain futures, those things set us apart from the others.
From the time that Katie was diagnosed with Autism, I had people giving me advice. I got phone calls from all over with books and articles and TV specials and documentaries that I should watch. None of that reached me, none of that helped me at all. One time a news program was running a clip about Autism, and I turned to my husband and said, "The phone is going to start ringing, don't even answer it." Sure enough, it started. People mean well, they do. Family means well. But in the beginning, it was very hard for me to watch other people, or read about other people, that were going through the same struggles that I was. It was like reading about MY pain, and who wants to do that? It is easier now, but I still tend to shy away from these kind of things. So who is out there watching them if the parents of autistic children aren't? Grandparents, aunts, uncles, friends, siblings, teachers, and anyone else that has a special someone in their life affected by autism.
As I have said before (and ripped off from Hillary), it takes a village to raise a child with Autism, so we will call the special people in the children's lives "the villagers". I think it is very important, and very beneficial, for the villagers to watch the TV shows and read the articles. They see these children a little here and there, but to really get a good picture of what they are like day to day, or even what it is like "behind the scenes", it might help them to do a little research.
I was blown away when the TV show "Parenthood" came out 4 years ago. I was extremely skeptical when I heard that they were going to have a boy with Asbergers on it. I thought that I would be really disappointed in how they portrayed it, and I KNEW that they would just gloss over it, and not really capture the whole impact of the Autism spectrum. But, let me tell you, they NAILED it! I have never cried and laughed and related to something so well in my whole autism-mother career. They show the frustration, the love, the denial, the acceptance, the sibling implications, the extended family involvement, the friends issues, the social aspects, the sensory challenges, the dietary complications......I could go on and on. If you even come across a family that knows someone recently diagnosed, tell them to go get the first season of Parenthood on DVD. Then they will see the minute by minute, constant struggles that the Autism spectrum presents. I have learned so much from watching the show myself. It is now in it's fourth season, and I am not caught up on watching it, but I am starting over with my first season DVDs.
I don't know why I apologize so much, or try to over explain myself as to not offend anyone while writing my blogs. I suppose it is the "people pleaser" in me, the non-confrontational me that feels the need to smooth down the feathers I think I might be ruffling when I write about our Adventures in Autism. I guess when I stop to think about it, why would someone get upset with something I have to say about MY adventures and MY struggles and MY daughter and her issues? I am not claiming to know everything, or represent Autism exclusively, or act like Autism is the only disorder in the world, or the worse thing to ever happen to a child. But I know people, and people read into things, and make what I say directed at them. In an episode of Parenthood, the dad has to cancel on his nephew for playing baseball because his son with Asbergers is having a meltdown. The dad gets yelled at for ditching the nephew, who got his feelings hurt, as he is trying to deal with his own Asberger crisis. The look on his face in that moment says it all. The "are you kidding me" look. The "do you want to switch places with me and then decide that you are going to be mad at me" look. I know that look, I OWN that look. So no more apologizing from me. I am going to be the parent I need to be, for all my children. I am going to protect them, and cherish them, and love them, and then I am going to tell you all about it. And if you ever want a tiny glimpse into what our lives, our Adventures in Autism are really like, come join me on the couch for an episode of Parenthood. Bring your own tissues.
From the time that Katie was diagnosed with Autism, I had people giving me advice. I got phone calls from all over with books and articles and TV specials and documentaries that I should watch. None of that reached me, none of that helped me at all. One time a news program was running a clip about Autism, and I turned to my husband and said, "The phone is going to start ringing, don't even answer it." Sure enough, it started. People mean well, they do. Family means well. But in the beginning, it was very hard for me to watch other people, or read about other people, that were going through the same struggles that I was. It was like reading about MY pain, and who wants to do that? It is easier now, but I still tend to shy away from these kind of things. So who is out there watching them if the parents of autistic children aren't? Grandparents, aunts, uncles, friends, siblings, teachers, and anyone else that has a special someone in their life affected by autism.
As I have said before (and ripped off from Hillary), it takes a village to raise a child with Autism, so we will call the special people in the children's lives "the villagers". I think it is very important, and very beneficial, for the villagers to watch the TV shows and read the articles. They see these children a little here and there, but to really get a good picture of what they are like day to day, or even what it is like "behind the scenes", it might help them to do a little research.
I was blown away when the TV show "Parenthood" came out 4 years ago. I was extremely skeptical when I heard that they were going to have a boy with Asbergers on it. I thought that I would be really disappointed in how they portrayed it, and I KNEW that they would just gloss over it, and not really capture the whole impact of the Autism spectrum. But, let me tell you, they NAILED it! I have never cried and laughed and related to something so well in my whole autism-mother career. They show the frustration, the love, the denial, the acceptance, the sibling implications, the extended family involvement, the friends issues, the social aspects, the sensory challenges, the dietary complications......I could go on and on. If you even come across a family that knows someone recently diagnosed, tell them to go get the first season of Parenthood on DVD. Then they will see the minute by minute, constant struggles that the Autism spectrum presents. I have learned so much from watching the show myself. It is now in it's fourth season, and I am not caught up on watching it, but I am starting over with my first season DVDs.
I don't know why I apologize so much, or try to over explain myself as to not offend anyone while writing my blogs. I suppose it is the "people pleaser" in me, the non-confrontational me that feels the need to smooth down the feathers I think I might be ruffling when I write about our Adventures in Autism. I guess when I stop to think about it, why would someone get upset with something I have to say about MY adventures and MY struggles and MY daughter and her issues? I am not claiming to know everything, or represent Autism exclusively, or act like Autism is the only disorder in the world, or the worse thing to ever happen to a child. But I know people, and people read into things, and make what I say directed at them. In an episode of Parenthood, the dad has to cancel on his nephew for playing baseball because his son with Asbergers is having a meltdown. The dad gets yelled at for ditching the nephew, who got his feelings hurt, as he is trying to deal with his own Asberger crisis. The look on his face in that moment says it all. The "are you kidding me" look. The "do you want to switch places with me and then decide that you are going to be mad at me" look. I know that look, I OWN that look. So no more apologizing from me. I am going to be the parent I need to be, for all my children. I am going to protect them, and cherish them, and love them, and then I am going to tell you all about it. And if you ever want a tiny glimpse into what our lives, our Adventures in Autism are really like, come join me on the couch for an episode of Parenthood. Bring your own tissues.
Wednesday, December 26, 2012
My Bad Day
It can be a very normal day, a good day even. The sun can be shining, the birds can be singing. All may be right with the world, but when one little thing goes wrong, it becomes Katie's "Bad Day". The littlest, tiniest thing may get it started. Not getting to eat when she wants to, or being told that she spilled something on her clothes. It may be due to an argument she has with a sister, or if I tell her we can't go to Mc Donalds. If she is upset, angered, disappointed or embarrassed at all, she will well up with tears, hang down her head, and say, "This is my BAD DAY". It sounds kind of cute when you hear it in a story, but it is NOT cute at all when you hear it so often. My oldest daughter got so tired of hearing it that she exclaimed, "Every day is your Bad Day!"
When someone tells you that they are having a bad day, you want to reach out to them, to help them get through the hard times. You might feel sympathy, or treat them a little kinder or more delicately. You might give them a break on things, and even pick up the slack so that their burden isn't so great. But, like the boy crying wolf, Katie is loosing sympathy points at my house rather quickly. Don't get me wrong. If something is really bothering her, or if she is hurting or struggling, we are all there to support her in any way that we can. But after it was originally comical, and now rather tiresome, it is all we can do to just get her through her moment of heartache without getting frustrated with her. Because once the waterworks start, and the yelling follows, there is no talking her down off that cliff.
I am sure some degree of Katie's angst is stemming from the fact that she is a teenager. I am positive that parents of teens out there deal with similar situations on a regular basis. I have an older teen, so I know this well. But when you mix teen angst with Autism, it is a lethal combination. Now the doors are slamming, the feet are stomping away, the music is blaring, and the term, "It's not fair!" are common occurences. And you know how sometimes you can't figure out just WHY your teen is upset about something? Try that with an Autistic teen that not only doesn't understand the feelings they are going through, but also doesn't have the words to express those feelings. Or, in Katie's case, when she is so upset about something and crying, you can't understand a word she is saying! There is one phrase I do understand, "It's my bad day!"
This is how it all gets started. Katie will get off the bus from school, happy and laughing and looking for snacks. "Katie, how was your day?" "It was good Mom. We watched a movie and I had a student council meeting and my friend sat by me in lunch!" "Katie, do you have homework? Let's do that before you have a snack (or watch TV, or listen to music)." "No, Mom, I want to...(fill in the blank)." "No, Katie, you have to do your homework first." "TODAY IS MY BAD DAY!" stomp, stomp, stomp SLAM!
Sometimes it feels like I must have the patience of a saint to deal with Katie. But then sometimes, even more times, it feels like I am the worst monster of a mother for the frustration that I feel. I talk about Katie alot, because I love her so much, but also because it helps me to deal with my uncertainties and anxiety I face when I struggle with raising her. I also talk about her alot because so many people are interested in her daily adventures and triumphs and tribulations. I live my life with Katie like it is an open book, and I guess when you leave your book open, people tend to pick it up and read it. I have been told by friends and strangers and coworkers and family that my husband and I are strong and are doing a wonderful job with Katie and her sisters. I can't tell you how good that feels to hear, because it doesn't always feel like we are doing the right thing. It doesn't always feel like we know what we are doing at all. I know I share alot of Katie's success stories, but I have just as many stories that make me want to cry. But if I can turn "My Bad Day!" into a good night, then our Adventures in Autism will be a success.
When someone tells you that they are having a bad day, you want to reach out to them, to help them get through the hard times. You might feel sympathy, or treat them a little kinder or more delicately. You might give them a break on things, and even pick up the slack so that their burden isn't so great. But, like the boy crying wolf, Katie is loosing sympathy points at my house rather quickly. Don't get me wrong. If something is really bothering her, or if she is hurting or struggling, we are all there to support her in any way that we can. But after it was originally comical, and now rather tiresome, it is all we can do to just get her through her moment of heartache without getting frustrated with her. Because once the waterworks start, and the yelling follows, there is no talking her down off that cliff.
I am sure some degree of Katie's angst is stemming from the fact that she is a teenager. I am positive that parents of teens out there deal with similar situations on a regular basis. I have an older teen, so I know this well. But when you mix teen angst with Autism, it is a lethal combination. Now the doors are slamming, the feet are stomping away, the music is blaring, and the term, "It's not fair!" are common occurences. And you know how sometimes you can't figure out just WHY your teen is upset about something? Try that with an Autistic teen that not only doesn't understand the feelings they are going through, but also doesn't have the words to express those feelings. Or, in Katie's case, when she is so upset about something and crying, you can't understand a word she is saying! There is one phrase I do understand, "It's my bad day!"
This is how it all gets started. Katie will get off the bus from school, happy and laughing and looking for snacks. "Katie, how was your day?" "It was good Mom. We watched a movie and I had a student council meeting and my friend sat by me in lunch!" "Katie, do you have homework? Let's do that before you have a snack (or watch TV, or listen to music)." "No, Mom, I want to...(fill in the blank)." "No, Katie, you have to do your homework first." "TODAY IS MY BAD DAY!" stomp, stomp, stomp SLAM!
Sometimes it feels like I must have the patience of a saint to deal with Katie. But then sometimes, even more times, it feels like I am the worst monster of a mother for the frustration that I feel. I talk about Katie alot, because I love her so much, but also because it helps me to deal with my uncertainties and anxiety I face when I struggle with raising her. I also talk about her alot because so many people are interested in her daily adventures and triumphs and tribulations. I live my life with Katie like it is an open book, and I guess when you leave your book open, people tend to pick it up and read it. I have been told by friends and strangers and coworkers and family that my husband and I are strong and are doing a wonderful job with Katie and her sisters. I can't tell you how good that feels to hear, because it doesn't always feel like we are doing the right thing. It doesn't always feel like we know what we are doing at all. I know I share alot of Katie's success stories, but I have just as many stories that make me want to cry. But if I can turn "My Bad Day!" into a good night, then our Adventures in Autism will be a success.
Sunday, December 9, 2012
Saving The World
We were so proud when Katie was selected to become a member of the Honor Society. I thought that it was THE biggest deal, and nothing could make me prouder. Once again, I stand corrected by the daughter that I (unconsiously) underestimate over and over. Her projects for honor society began almost as soon as she was selected. At the end of the school year the group was cleaning out lockers. Then before school started they hosted the open house for new students. They have had meeting every other week, candy sales, bake sales, hosted the parent teacher conferences, ran "slipper day" at school, participated in "Rake and Run", and most recently went shopping for needy families at Target. That is a lot of projects for one group, and Katie has insisted on participating in ALL of them. She writes down all her events in my calendar, reminds me about her plans before hand, and enjoys every minute of the project. I am blown away by how involved she is in this group. I am blown away by how much she enjoys being a part of something bigger. I am also blown away by how the group excepts her for who she is, and includes her in everything.
On the way home from her latest project, Katie started to make her own plans. She decided that she wanted to help "all the children in the world"......"you know, the ones in Tennessee and Florida". First, she wanted to host a lemonaide stand. I told her I didn't think that would go over very well in Michigan, in December. So then she decided we should try a garage sale. Again, a bad winter weather choice. She started getting frustrated with me then, and said what she really wanted to do was earn money so she could take all the kids with cancer to Disney, and show them around. I then had to further disappoint her when I told her I didn't think that people would allow their kids to go to Disney with just a teenager as a chaperone. This had to be the cutest conversation we have ever had. She was so determined to do something to help, so determined to earn some money to finace her charity events.
I know quite a few girls Katie's age that are as interested as she is in helping others, girls and boys actually. A friend has a daughter who is just dying to ring the bell for the Salvation Army this Christmas. My other 2 daughters, and many of their friends, have donated 8 or more inches of their hair to children with hairloss. And of course there are all the classmates of Katie's on the Honor Society. But Katie is Autistic. Autistic kids generally aren't too concerned about other people and their feelings. There are exceptions to that, of course, because there isn't a single Autisic trait that is absolutely true for every single Autistic kid. But, having said that, Autistic kids have enough trouble figuring out their own needs and figuring out their own feelings, let alone worrying about what others are thinking or feeling or needing. Katie takes a whole class in school on social cues and holding conversations and interpreting the actions of others. It is not something that comes naturally to these kids. It is not that they don't care for others, or are selfish or self-centered, but it is just an element that is lacking in them. So for Katie, who by her diagnosis would be expected to not pick up on these things, for her to want to help others in need, that is just remarkable to me.
That brings to my mind the whole debate of nature vs. nurture. If Katie, by the "nature" of having Autism, is not expected to care about others, does that mean that the way she was raised and the examples that were shown to her helped her overcame this particular hardship? If that is the case, I have my parents to thank for that. From the time my children were little, my parents have brought them to all their Kiwanis events. My girls have done everything from food and clothing drives, to Kids Against Hunger, from ringing the Salvation Army bell to selling peanuts, from hosting the Angels giving tree at Christmas to walking in the Relay for Life. It is no wonder the Honor Society snapped Katie up with a resume like that! My parents instilled in my children the drive to help others, and to enjoy doing it. That these events they attend are fun, and the feeling you get from doing something for the community is just a big bonus. My parents "nurtured" in them the desire to make this world a better place for others, especially the children that need it most. I may be completely off my mark giving them all the credit, but doesn't that have a ring of truth to it? Doesn't that make a lot of sense?
Whether Katie's compassion was born with her, or taught to her, she has the biggest heart I have ever seen. I am so proud of her, not only for her day to day accomplishments, but especially for her strive to be kind and giving to others. As always, I can learn alot about life by just watching how she overcomes her hardships without being jaded by them. Not letting them hold her back. I don't even think she would list Autism as a disablity if you asked her. To her it is more like a personality trait. I have a harder time accepting it and rationalizing it and living with it and getting over it than she does. But I am trying to learn from her example. To learn how to give, learn how to love, learn how to serve. I just try to keep up with her, running all over the place while she is making life better for others. If you want to keep up with Katie's Adventures in Autism, go find her out saving the world.
On the way home from her latest project, Katie started to make her own plans. She decided that she wanted to help "all the children in the world"......"you know, the ones in Tennessee and Florida". First, she wanted to host a lemonaide stand. I told her I didn't think that would go over very well in Michigan, in December. So then she decided we should try a garage sale. Again, a bad winter weather choice. She started getting frustrated with me then, and said what she really wanted to do was earn money so she could take all the kids with cancer to Disney, and show them around. I then had to further disappoint her when I told her I didn't think that people would allow their kids to go to Disney with just a teenager as a chaperone. This had to be the cutest conversation we have ever had. She was so determined to do something to help, so determined to earn some money to finace her charity events.
I know quite a few girls Katie's age that are as interested as she is in helping others, girls and boys actually. A friend has a daughter who is just dying to ring the bell for the Salvation Army this Christmas. My other 2 daughters, and many of their friends, have donated 8 or more inches of their hair to children with hairloss. And of course there are all the classmates of Katie's on the Honor Society. But Katie is Autistic. Autistic kids generally aren't too concerned about other people and their feelings. There are exceptions to that, of course, because there isn't a single Autisic trait that is absolutely true for every single Autistic kid. But, having said that, Autistic kids have enough trouble figuring out their own needs and figuring out their own feelings, let alone worrying about what others are thinking or feeling or needing. Katie takes a whole class in school on social cues and holding conversations and interpreting the actions of others. It is not something that comes naturally to these kids. It is not that they don't care for others, or are selfish or self-centered, but it is just an element that is lacking in them. So for Katie, who by her diagnosis would be expected to not pick up on these things, for her to want to help others in need, that is just remarkable to me.
That brings to my mind the whole debate of nature vs. nurture. If Katie, by the "nature" of having Autism, is not expected to care about others, does that mean that the way she was raised and the examples that were shown to her helped her overcame this particular hardship? If that is the case, I have my parents to thank for that. From the time my children were little, my parents have brought them to all their Kiwanis events. My girls have done everything from food and clothing drives, to Kids Against Hunger, from ringing the Salvation Army bell to selling peanuts, from hosting the Angels giving tree at Christmas to walking in the Relay for Life. It is no wonder the Honor Society snapped Katie up with a resume like that! My parents instilled in my children the drive to help others, and to enjoy doing it. That these events they attend are fun, and the feeling you get from doing something for the community is just a big bonus. My parents "nurtured" in them the desire to make this world a better place for others, especially the children that need it most. I may be completely off my mark giving them all the credit, but doesn't that have a ring of truth to it? Doesn't that make a lot of sense?
Whether Katie's compassion was born with her, or taught to her, she has the biggest heart I have ever seen. I am so proud of her, not only for her day to day accomplishments, but especially for her strive to be kind and giving to others. As always, I can learn alot about life by just watching how she overcomes her hardships without being jaded by them. Not letting them hold her back. I don't even think she would list Autism as a disablity if you asked her. To her it is more like a personality trait. I have a harder time accepting it and rationalizing it and living with it and getting over it than she does. But I am trying to learn from her example. To learn how to give, learn how to love, learn how to serve. I just try to keep up with her, running all over the place while she is making life better for others. If you want to keep up with Katie's Adventures in Autism, go find her out saving the world.
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