It's that time of year once again. It's the end of another school year for all students, and time to look ahead at what is coming in the fall. For many parents it is a time of relief. No more packing lunches, no more early mornings, no more fighting to get homework done. For others, it is bittersweet. A realization that our children are growing up way too quickly. And most parents know that all too soon, we will be wishing that school was back in session, when we hear that the kids are bored, or they are fighting. But, when your child is Autistic, or has any special needs for that matter, spring is usually the time of year for the annual IEP.
Oh, the IEP. A parent's worst nightmare. For those of you not familiar, an IEP is an indivudualized education program. So what does that mean? Basically, it is a blueprint of what your child needs for their schooling to be successfull. It covers the basic classes, but also occupational therapy, speech therapy, physical therapy, socialization, emotional needs, transportation issues; you name it, your kid needs it, and it is covered in the IEP. It is a contract between you as a parent, and the school district providing the services for your child. The teachers and providers list the specific number of hours that they will be working with your child. They list the specific resources and technology that they will be utilizing. They even list your child's strengths and weaknesses. It is a 20+ page document that has to be reviewed, discussed and signed by the parent and multiple representatives from the school system.
That doesn't sound so bad to you? That sounds pretty reasonable, that makes sense? Well, I just painted a very broad picture of what it involves, but I did not hint to what that means to a parent. We all know that they are coming up. The IEP is an annual event, so we know that they are right around the corner. Then the notice comes in the mail. The few days prior, we start to get nervous. The night before, sometimes we can't sleep. And the day of, we are guaranteed to sweat through whatever type of shirt we are wearing. It doesn't matter if your child is doing well in school, or meeting all their goals. With Autism, there are no guarantees in life, no certainty that we know what is up around the bend. Just because your child has been successfull at their present level, does not mean it will translate to the next. And teachers change, para-pros change, classmates change, your child will change. So trying to plan for the next year is terrifying. Do they have to change classrooms? Do they have to change schools? Will their teacher change? If so, how will the new teacher and your child get along? Will the services provided thus far continue? Are there life changes expected that might impact their schooling?
On top of all these questions is the fact that sometimes you have to fight for what you think is best for your child. You will not always see eye to eye with the people in the IEP. You might have an entirely different vision of your child's future. I have cried in IEPs. I have physically felt ill. I have seen red and I have felt like I was having a stroke. I have felt misunderstood, and I have felt my child has been misunderstood. We have been fortunate the last several years, in that we have been pleased with the outcome of our IEP. But now the hard part is looking further and further in the future. At some point, every parent has to have the dreaded conversation, "Where do I see my child ending up?" "How far will they go in their schooling?" "What are they capable of?" These are very hard questions to ask yourself, because you don't know the answers. And sooner or later you have to make decisions, based on these questions. What if you make the wrong decision? What if you short-change your child and stunt their capablities? Or, on the other hand, what if you push them too hard, and they fail? And what do you consider failure? That they don't meet the expectation that you set for them? That is not fair to anyone.
As you can see, there is the side of Autism that the public can see, and there is the side they hopefully they never will. To see my daughter at school, she is happy, friendly, outgoing, and engaging. She has a very dynamic personality that draws people of all ages to her. At home, she is all those things, but also more. She gets frustrated easily, she obsesses over things on a nightmarish level. She is very, very loud. She talks to her "pretend friends" constantly. She plays the same music over and over again. She can become hysterical in an instant for the smallest reason. When she is upset, she talks so fast and so loud that no one can understand her. The same dicotomy applies to her schooling. You can see her as an excellent student, on the honor role and honor society, student council and track team. But open up her folder and you won't be able to read a single thing she has written. She tends to rush through her assignments, and has no sense of responsibility with her homework or school supplies. She is intelligent, but also is below her grade level. So what will happen if I push her harder?
Katie will be starting a new school in the fall, but continuing on in the same program. She will be rejoining friends and classmates, and a few of the staff will be the same. I am confident that the program she is enrolled in will continue to benefit her, and educate her to the best of her ability. But that doesn't mean I'm not up nights worrying about it. That doesn't mean that the first day of the new school year won't give me an ulcer. And that doesn't mean that I am now friends with the IEP. Sometimes, our Adventures in Autism lead us down a path that we cannot see the end of, that may seem never ending. And an IEP is always an adventure!
Saturday, June 8, 2013
Tuesday, May 14, 2013
The Lucky One
I have heard it all, or just about, in my day. The things that people say to me, in regards to Katie and her Autism, would just blow your mind. Some people are ignorant, some people are cruel, some people are just plain uninformed. I have learned over the years, to take everything I hear with a grain of salt, and not listen too closely to the hurtful remarks. I try to give people the benefit of the doubt, that they are not intentionally trying to hurt her, or me, by what they say. But I have to say that people don't always think before they speak. They don't realize exactly what their comments mean to us. I do believe the very worst part is when it comes from another parent whose child has struggles of their own.
Everyone has their cross to bear, everyone has their burden to carry. It is not a competition to see who is the most troubled. Who would win that anyway? The person with the lightest load, or the person with the heaviest? The one most troubled would invoke the most sympathy, so would that make them the winner? Is there a hierarchy in all of this? A pecking order? If you have more issues, do you therefore get to complain more, do you get the microphone longer? Should I feel that I don't have room to complain (or even voice my concerns) because they are less than yours?
I was having a conversation with another parent, by no means the first of it's kind, and we were sharing our latest forays in the Autism world. Now, Katie has had her share of success stories this past year. I am extremely proud of her, and very vocal and open about how well she has been doing. She has also had some bumps in the road as well, but I don't necessarily shout about them all the time. During this conversation, I was listening to all the hardships and trials and disasters that had been encountered this week by a child with Autism. I was familiar with the child, the parent, and the issues were not new to me either. But I patiently listened and lent my support, when she decided to tell me that I was "lucky" that Katie wasn't like her child.
I am many things in life, but "lucky" is not one of them. I have worked very hard, along with my husband, to help Katie become the girl she is today. She has worked very hard to find her way in life. We started therapies and play groups and doctors when she was first diagnosed at age 2. We had her in sensory integration therapy at age 5, and I literally got the crap beat out of me by her while we were doing that. How many different schools, IEP's, medications, reward systems, teachers, tantrums, and prayers, prayers, prayers have we gone through up to this point? I will not argue that some people have it worse off than us, than Katie. There are more severely Autistic kids out there for sure. There are physically handicapped children, and mentally challenged children that have horrors and challenges I could never begin to mention. But I don't consider myself "lucky" that Katie isn't like them. I think that seriously undermines the fact that everyone's life is different, and we have to learn how to take what we are given and make it work for us. If Katie was born differently, more severely affected, and we worked hard for her to make a success out of the life she was born with, would we still be "lucky"?
To me, "lucky" implies that we were given something for free, that we did not earn. You are "lucky" when you win a prize, or find a dollar lying on the ground. The past 12 years of our lives have been the most challenging ones we will probably ever face. We came out of them battered and bruised, but with the knowledge that all the hard work we did was for Katie, and we are in awe and wonder at the teen that she is today. We feel blessed to have her, blessed that she is such a kind hearted and loving girl. We feel blessed that she has been able to rise above her struggles. But blessed and "lucky" are two different things.
If you are thinking that I took one small statement and blew it out of proportion, that is not the case. It was not an off-handed remark made once. It was repeated again and again, and brought up in numerous conversations. It was said in a bitter way, like a poor sport that looses a race. Our children are not in a race, they are not competing to be the best behaved Autistic child, or the Autistic child with the least amount of trouble at school. And, as parents of Autistic children, we should be on the same team, always. We should be supportive of each other and of all the children. We should delight in all of their success, and work together through their troubles. Isn't it hard enough without attacking each other? We, of all people, know what each other go through. We know the ups and downs, the highs and lows. We can go to each other and understand exactly what is going on, with only a few simple words.
I don't expect anyone to walk on eggshells around me. I don't expect them to choose their words carefully, lest they offend me. I will not call anyone out, or shout at them, or lecture them, if they say something that is less than polite. For the most part, people are very gracious. But, there are things out there that will be said that may hurt my feelings. I am a big girl, I can take it. Katie is also a big girl, and might not even know that she should be offended. If something is said, I just grit my teeth and move on, knowing that most people aren't intentional in their rudeness. If they are obviously obnoxious I might make a statement, but otherwise, I just move on. But, if you truly care about me, you will not call me "lucky". Among those living their own Adventures in Autism, there are no "lucky" ones.
Everyone has their cross to bear, everyone has their burden to carry. It is not a competition to see who is the most troubled. Who would win that anyway? The person with the lightest load, or the person with the heaviest? The one most troubled would invoke the most sympathy, so would that make them the winner? Is there a hierarchy in all of this? A pecking order? If you have more issues, do you therefore get to complain more, do you get the microphone longer? Should I feel that I don't have room to complain (or even voice my concerns) because they are less than yours?
I was having a conversation with another parent, by no means the first of it's kind, and we were sharing our latest forays in the Autism world. Now, Katie has had her share of success stories this past year. I am extremely proud of her, and very vocal and open about how well she has been doing. She has also had some bumps in the road as well, but I don't necessarily shout about them all the time. During this conversation, I was listening to all the hardships and trials and disasters that had been encountered this week by a child with Autism. I was familiar with the child, the parent, and the issues were not new to me either. But I patiently listened and lent my support, when she decided to tell me that I was "lucky" that Katie wasn't like her child.
I am many things in life, but "lucky" is not one of them. I have worked very hard, along with my husband, to help Katie become the girl she is today. She has worked very hard to find her way in life. We started therapies and play groups and doctors when she was first diagnosed at age 2. We had her in sensory integration therapy at age 5, and I literally got the crap beat out of me by her while we were doing that. How many different schools, IEP's, medications, reward systems, teachers, tantrums, and prayers, prayers, prayers have we gone through up to this point? I will not argue that some people have it worse off than us, than Katie. There are more severely Autistic kids out there for sure. There are physically handicapped children, and mentally challenged children that have horrors and challenges I could never begin to mention. But I don't consider myself "lucky" that Katie isn't like them. I think that seriously undermines the fact that everyone's life is different, and we have to learn how to take what we are given and make it work for us. If Katie was born differently, more severely affected, and we worked hard for her to make a success out of the life she was born with, would we still be "lucky"?
To me, "lucky" implies that we were given something for free, that we did not earn. You are "lucky" when you win a prize, or find a dollar lying on the ground. The past 12 years of our lives have been the most challenging ones we will probably ever face. We came out of them battered and bruised, but with the knowledge that all the hard work we did was for Katie, and we are in awe and wonder at the teen that she is today. We feel blessed to have her, blessed that she is such a kind hearted and loving girl. We feel blessed that she has been able to rise above her struggles. But blessed and "lucky" are two different things.
If you are thinking that I took one small statement and blew it out of proportion, that is not the case. It was not an off-handed remark made once. It was repeated again and again, and brought up in numerous conversations. It was said in a bitter way, like a poor sport that looses a race. Our children are not in a race, they are not competing to be the best behaved Autistic child, or the Autistic child with the least amount of trouble at school. And, as parents of Autistic children, we should be on the same team, always. We should be supportive of each other and of all the children. We should delight in all of their success, and work together through their troubles. Isn't it hard enough without attacking each other? We, of all people, know what each other go through. We know the ups and downs, the highs and lows. We can go to each other and understand exactly what is going on, with only a few simple words.
I don't expect anyone to walk on eggshells around me. I don't expect them to choose their words carefully, lest they offend me. I will not call anyone out, or shout at them, or lecture them, if they say something that is less than polite. For the most part, people are very gracious. But, there are things out there that will be said that may hurt my feelings. I am a big girl, I can take it. Katie is also a big girl, and might not even know that she should be offended. If something is said, I just grit my teeth and move on, knowing that most people aren't intentional in their rudeness. If they are obviously obnoxious I might make a statement, but otherwise, I just move on. But, if you truly care about me, you will not call me "lucky". Among those living their own Adventures in Autism, there are no "lucky" ones.
Tuesday, April 9, 2013
And She Was Runnning....
Of all the activities in the world, of all the sports offered at school, I would have never guessed that Katie would pick track and field. Katie is the opposite of athletic. I am not saying this to be mean or condescending, but it is an obvious observation. Katie doesn't have control over her body like other kids do. She doesn't hold herself the same, her motions are not the same. To make a broad description, she is like the proverbial "bull in a china shop". Not to mention the fact that she is not fast, and probably does not run straight at all. Needless to say, I was surprised when she came home from school, declaring that she wanted to join the track team.
I obviously had some concerns about her starting this new endevor. I wasn't sure how the team was run, or who was coaching, or where to send her or when. I wasn't sure if she would know anyone, or if she would even make it past the first practice. But I had to let her try. So the first thing I did was talk to her teacher in school. I asked her if she thought this was a good idea, and if she knew anyone else going to run track, and for any more information that she could give me. Her teacher was beyond thrilled, and very eager to help us out with whatever we needed to get her settled. Next I emailed the track coach, to give him a "heads up" about Katie. I felt that I should describe her briefly, just to let him know what to expect, and to ask him what we should expect as well. He was very gracious, welcoming her and describing not only the season, but himself and his qualifications as well. He told me where to send her and when, and when I went to pick her up the first day, introduced himself to me.
Now that all the legistics were taken care of, it was down to Katie. I didn't know if she would even like to run. I didn't know if she would have the stamina to make it past the first few days of practice. She has never had a sport or activity that she has done on a consistent basis that was this physically demanding. When she played soccer with her VIP league, it was only an hour, twice a week, most of which was spent in snack time. Her bowling league was not physically challenging. Her latest activity, cheering for our church basketball team, was just for one practice a week, and a game every other week. I was anxious to see if she was going to stick it out. I was also hesitant to buy her track t-shirt and hoodie, let alone pay the "pay to play" fee, if she was going to just drop out after a few days. So I sat her down and told her that she could try it for a week. There was a parents meeting scheduled at the beginning of the second week. I said if she still liked it by the parents meeting, then I would order her "uniform", and pay her fee.
Anxious to see how she was doing, I snuck into practice to pick her up and watch her. It was cold outside, so they were indoors, running the hallways. Before I knew it, here came Katie, flying down the hallway. I had packed her sweats and a hoodie, along with her shorts and t-shirt, in case they went outside. She had all of it on, long hair flying behind her, with the biggest grin on her face. I was worried that she would stand out, being uncoordinated and on the slower side. After watching all 80 girls run past, however, she was not the goofiest, nor the slowest, nor the least coordinated girl there. I don't say that to be mean, I say that to illustrate that all the girls, regardless of their abilities or talents, were welcome to participate. I breathed a huge sigh of relief, and my heart swelled with pride and happiness. Here is my daughter, whom I have worried about and fretted over for a million different reasons, here she is just living her life. Living her life up big, not letting anything hold her back. She doesn't care how fast or slow she is. She just loves being included, being part of something.
After that first week of practice, she was so tired. The whole weekend, she was just dragging all over. I thought that she would want to quit. I thought she would associate track with working too hard, and being tired. But she committed to the team, and she is a die hard member. Over spring break, they held practice for anyone who was in town. I actually tried to talk Katie out of going because it was so cold, but she insisted on going. Now it is 3 weeks into the season, and their first track meet is today. Yesterday, they passed out the track t-shirts that we had ordered. Since they were only $5, I ordered her 2 of them. I figured if she had meets close together, or I could wear one to a meet. I knew she would love those t-shirts, and want to wear them all the time. I told her I was going to wear one, and she said that they were her t-shirts, and she wanted to wear one to bed.
I cannot wait to see her at her track meet. I can just picture it. Katie, sitting with all her track friends. Some girls she knew from elementary school, some from classes at middle school. Some friends from church or catechism, or cheerleading. She will be right in the middle of them all, listening to all them, laughing with them, cheering them on. And when it comes time for her to run, I know she is going to be so proud of herself. She is going to have the biggest smile on her face, and she is going to run for the pure joy of being part of a team. Sometimes her Adventures in Autism have nothing to do with Autism at all. Sometimes they have everything to do with just being a regular kid.
I obviously had some concerns about her starting this new endevor. I wasn't sure how the team was run, or who was coaching, or where to send her or when. I wasn't sure if she would know anyone, or if she would even make it past the first practice. But I had to let her try. So the first thing I did was talk to her teacher in school. I asked her if she thought this was a good idea, and if she knew anyone else going to run track, and for any more information that she could give me. Her teacher was beyond thrilled, and very eager to help us out with whatever we needed to get her settled. Next I emailed the track coach, to give him a "heads up" about Katie. I felt that I should describe her briefly, just to let him know what to expect, and to ask him what we should expect as well. He was very gracious, welcoming her and describing not only the season, but himself and his qualifications as well. He told me where to send her and when, and when I went to pick her up the first day, introduced himself to me.
Now that all the legistics were taken care of, it was down to Katie. I didn't know if she would even like to run. I didn't know if she would have the stamina to make it past the first few days of practice. She has never had a sport or activity that she has done on a consistent basis that was this physically demanding. When she played soccer with her VIP league, it was only an hour, twice a week, most of which was spent in snack time. Her bowling league was not physically challenging. Her latest activity, cheering for our church basketball team, was just for one practice a week, and a game every other week. I was anxious to see if she was going to stick it out. I was also hesitant to buy her track t-shirt and hoodie, let alone pay the "pay to play" fee, if she was going to just drop out after a few days. So I sat her down and told her that she could try it for a week. There was a parents meeting scheduled at the beginning of the second week. I said if she still liked it by the parents meeting, then I would order her "uniform", and pay her fee.
Anxious to see how she was doing, I snuck into practice to pick her up and watch her. It was cold outside, so they were indoors, running the hallways. Before I knew it, here came Katie, flying down the hallway. I had packed her sweats and a hoodie, along with her shorts and t-shirt, in case they went outside. She had all of it on, long hair flying behind her, with the biggest grin on her face. I was worried that she would stand out, being uncoordinated and on the slower side. After watching all 80 girls run past, however, she was not the goofiest, nor the slowest, nor the least coordinated girl there. I don't say that to be mean, I say that to illustrate that all the girls, regardless of their abilities or talents, were welcome to participate. I breathed a huge sigh of relief, and my heart swelled with pride and happiness. Here is my daughter, whom I have worried about and fretted over for a million different reasons, here she is just living her life. Living her life up big, not letting anything hold her back. She doesn't care how fast or slow she is. She just loves being included, being part of something.
After that first week of practice, she was so tired. The whole weekend, she was just dragging all over. I thought that she would want to quit. I thought she would associate track with working too hard, and being tired. But she committed to the team, and she is a die hard member. Over spring break, they held practice for anyone who was in town. I actually tried to talk Katie out of going because it was so cold, but she insisted on going. Now it is 3 weeks into the season, and their first track meet is today. Yesterday, they passed out the track t-shirts that we had ordered. Since they were only $5, I ordered her 2 of them. I figured if she had meets close together, or I could wear one to a meet. I knew she would love those t-shirts, and want to wear them all the time. I told her I was going to wear one, and she said that they were her t-shirts, and she wanted to wear one to bed.
I cannot wait to see her at her track meet. I can just picture it. Katie, sitting with all her track friends. Some girls she knew from elementary school, some from classes at middle school. Some friends from church or catechism, or cheerleading. She will be right in the middle of them all, listening to all them, laughing with them, cheering them on. And when it comes time for her to run, I know she is going to be so proud of herself. She is going to have the biggest smile on her face, and she is going to run for the pure joy of being part of a team. Sometimes her Adventures in Autism have nothing to do with Autism at all. Sometimes they have everything to do with just being a regular kid.
Monday, March 18, 2013
Surprise Party!
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.
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 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.
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