I am nervous. Katie is on her very first friend sleepover. This is a huge deal for her, and she feels so grown up. Her friend, who is 17 and also has a form of autism, is like Katie in many ways, but different in others. Her mother suggested having a sleepover a few months ago, since her daughter has never had a friend spend the night, and we thought this might be the perfect opportunity. Since she knows how Katie can be, and Katie won't be bothered by anything out of the ordinary that her daughter might do, we decided to try it. My oldest daughter also loves that family, so she was invited along too. That made me feel better that she could help Katie out with whatever she might need, and also be there for emergency purposes. Autistic children tend to create different emergencies that other people might not understand. Like dinner not being on time, or dogs barking, or drinking too much pop at nighttime.
Sleepovers are an intregal part of the growing up process. They foster independence, solidify friendships, create long-lasting memories, and produce endless pictures to remember them by. My rule for my children was that, unless it was family, they had to be in 4 th grade to have, or go on, sleepovers. My oldest has had endless friends over. They make cookies, walk up to the corner store, make movies, watch tv, plan their lives, and eat non- stop. My youngest just began the sleepover years, and could not wait to get started. We even framed a picture of her and her friend at the first sleepover. Katie, however, has never experienced the fun. One reason is that she talks herself to sleep every night for a few hours. What friend would put up with that? Another reason is that I don't know if the friend, or the family, would be able to handle the random issues that Katie creates. To see her for a few hours in school, or in sports, or at church is one thing. But Katie, 24 hours worth, is quite another.
I trust my friend. We have spend endless hours discussing our daughters and their issues. I have heard many stories about what she deals with, and she has heard mine. I know that whatever Katie might come up with, my friend has probably already seen and dealt with, with her own daughter. And if she hasn't seen this specific problem, at least she won't get rattled or spooked or horrified by it. So what exactly am I expecting Katie to do that is so horrible? I have no idea, but it is going to keep me up tonight. Because, even if I am confident in my friends ability to handle Katie, and even though my oldest daughter is with her, I am still terrified by the fact that she is spending the night at a friends house. Don't ask me to explain it, because I can't. People who know me understand this about me. It is just like the night before school starts. You know the school, you have met the teacher, you love the classmates, but you are still nervous for them. I was the same way before she went to her first middle school dance. She was excited, there were plenty of chaperones, her friends were there with her, and all I wanted to do was hide behind the door and peek in to watch.
It is a bittersweet moment for sure. Bitter because you just never know how she is going to act. Bitter because so many things could go wrong. Bitter because it is a step closer to growing up. Bitter because this is only her first sleepover and her little sister has already had 3. Bitter because she has never been invited by other friends, even if I wouldn't let her go. Bitter because, although her older sister is ther as a friend, I wouldn't have let her go without her big sister to watch over her. But sweet, so sweet. Sweet because there is a special, special family out there that we have so much in common with. Sweet because she has a friend that loves her for being Katie, and Katie loves her back. Sweet because my oldest daughter is there, watching her, protecting her, but also encouraging her to live her life big. Sweet because sleepovers are part of being a grown up girl, and she wants to be a grown up girl so very much. Sweet because my friend has been texting me constantly, so I know that Katie is having the time of her life.
Sometimes I stop and look at Katies life. It is no so different from other girls her age. She might not have a lot of friends, but the friends that she does have are very good to her. She might not talk on the phone all the time, but she does have girlfriends call to chat. She might not live on the computer, but she loves to send, and receive, emails. She is growing up in bits and pieces. Slower than some, faster than others, but just right for her. In about 3 inches she will be taller than me. She already can wear my clothes and most of my shoes. As scary as all of this is to me, I want her to become a teenager as easily as she can. I want her to do everything that she wants to do, be in whatever club or sport or event that she wants to try. I guarantee that she will find her niche in life and become comfortable in her own shoes, regardless of how scary her journey is for me. I love that she is on a sleepover right now. I love that my friend and her daughter welcomed her into their home unconditionally. I am not going to sleep tonight, because even though Katie's Adventures in Autism are thrilling to her, I white knuckle it all the way.
Wednesday, April 11, 2012
Monday, April 9, 2012
Innocence
The Easter Bunny was very good to Katie this year. He brought her a new Disney blanket, the Muppets movie, some toys from Disney "Cars", a bunch of candy, and some Pepsi. There were a few other small presents, and she was thrilled with all of her gifts. The Easter Bunny still comes to our house, and so does Santa and the Tooth Fairy. Obviously, my oldest daughter is in on the situation, but my youngest still believes, and so does Katie. I am hoping that she will always believe in the wonderful childhood stories that most kids grow out of way before they get to middle school. I can only imagine that sometime, in the next few years, someone either at school or somewhere will clue her in to the harsh reality of the world. But is it too much to wish that it never happens? Is it too much to hope that she will always stay innocent, and believe in fairies and gold at the end of the rainbow and Disney magic?
I don't want Katie to stay young forever. I don't want her to be naive about the world, I don't think that would do her any good. I certainly hope that she doesn't get hurt by her believing in fairy tale things, but there is just something special when your children get excited about the holidays and the fantasy characters that appear and bring them treats and presents. The whole world gets a little magical, and we can forget about our busy lives for awhile if we stop to focus on the special times that we share together. My father in law will tell you I never want my kids to grow up, and in some ways this might be true. I am looking forward to seeing what kind of adults that they will turn out to be, at the same time wishing they could slow down a little and enjoy the youth that they are quickly leaving behind.
Katie is in a different category, though, and I imagine no matter how old she gets, there will always be a certain innocence that will never go away. That can help her and hurt her at the same time. It can help her by always focusing on the good in people, and believing them to be kind and gracious to her. It can hurt her when all of the goodness turns out to be a lie, or worse, if there is no goodness at all. I think she will have a hard time understanding cruelty. I believe that it is out there, and she has been exposed to it, but I don't think she recognizes it for what it is. I can't be there for her all the time, protecting her. In fact, when she is in school, she is away from me more than she is with me. I have to trust that she is safe and happy, and make sure that when she comes home, I find out all about her day and whats worries or troubles her. If I think that there is something going on, I have to get to the bottom of the issue and make it right the best that I can.
I have a very happy child who genuinely enjoys her life. I am very fortunate in that, because sometimes Autism can manifest itself with anger or aggression, or sadness or anxiety. Katie has her issues, don't get me wrong, but I think I was given a very special gift in Katie's personality. Maybe one of the concessions I am receiving, in return for being a mother of an autistic child, is that she will always be innocent and always believe in all the fun things that childhood creates. If this is the case, imagine how much fun it will be when her sisters are older and have children. When they come over for Christmas, "Aunt Katie" will be right in there with them, sitting on Santa's lap, baking him cookies, writing him letters, and listening for the reindeer footsteps on the rooftops. Who wouldn't want an aunt like that? I am excited, and also terrified, to see what sort of adult Katie will turn out to be. Will our adventures in autism take us to Disney, watching for Tinker Bell flying through the sky, or will Katie loose her innocence like every one else?
I don't want Katie to stay young forever. I don't want her to be naive about the world, I don't think that would do her any good. I certainly hope that she doesn't get hurt by her believing in fairy tale things, but there is just something special when your children get excited about the holidays and the fantasy characters that appear and bring them treats and presents. The whole world gets a little magical, and we can forget about our busy lives for awhile if we stop to focus on the special times that we share together. My father in law will tell you I never want my kids to grow up, and in some ways this might be true. I am looking forward to seeing what kind of adults that they will turn out to be, at the same time wishing they could slow down a little and enjoy the youth that they are quickly leaving behind.
Katie is in a different category, though, and I imagine no matter how old she gets, there will always be a certain innocence that will never go away. That can help her and hurt her at the same time. It can help her by always focusing on the good in people, and believing them to be kind and gracious to her. It can hurt her when all of the goodness turns out to be a lie, or worse, if there is no goodness at all. I think she will have a hard time understanding cruelty. I believe that it is out there, and she has been exposed to it, but I don't think she recognizes it for what it is. I can't be there for her all the time, protecting her. In fact, when she is in school, she is away from me more than she is with me. I have to trust that she is safe and happy, and make sure that when she comes home, I find out all about her day and whats worries or troubles her. If I think that there is something going on, I have to get to the bottom of the issue and make it right the best that I can.
I have a very happy child who genuinely enjoys her life. I am very fortunate in that, because sometimes Autism can manifest itself with anger or aggression, or sadness or anxiety. Katie has her issues, don't get me wrong, but I think I was given a very special gift in Katie's personality. Maybe one of the concessions I am receiving, in return for being a mother of an autistic child, is that she will always be innocent and always believe in all the fun things that childhood creates. If this is the case, imagine how much fun it will be when her sisters are older and have children. When they come over for Christmas, "Aunt Katie" will be right in there with them, sitting on Santa's lap, baking him cookies, writing him letters, and listening for the reindeer footsteps on the rooftops. Who wouldn't want an aunt like that? I am excited, and also terrified, to see what sort of adult Katie will turn out to be. Will our adventures in autism take us to Disney, watching for Tinker Bell flying through the sky, or will Katie loose her innocence like every one else?
Wednesday, April 4, 2012
Light It Up Blue - Autism Awareness Month
April is Autism Awareness month, as I am sure you all know. It seems that autism is the "in" thing right now, and people everywhere are jumping on the bandwagon to support it. April 2nd was "light it up blue" night, and people nationwide put blue lightbulbs in their porchlights. Several well known buildings and structures also lit up blue. This month you will see people with their puzzle piece ribbons and pins, bracelets and necklaces. But how can YOU support autism awareness? How can YOU personally make a difference, show that you care?
There are quite a few autism charities and organizations that are in need of support. Autism Speaks, the Autism Society of America, and Jacks Place for Autism are just a few if you are looking for more of making a financial contribution. They do research, are advocates for the children, provide resources and information, and bring the families together.
But what if you personally know someone with autism? How can you help out? It all depends on how well you know the family. If you are close to the family, but not the child, you can do something nice for the whole family. When a child has autism, the entire family is affected, and sometimes it is nice to acknowledge that fact by recognizing how much they all do for the child. Sometimes just giving them some recognition goes a long way. Buying them dinner one night, or making them dinner. If you feel comfortable enough with the child, you can babysit for a few hours so the parents can go out for some alone time. Bring the parents a bottle of wine. Or a case of beer. Or a gift card out to dinner. Stay later when the kids are in bed and just let them talk. Let them vent, let them cry. Let them voice all their worries and fears that no one ever bothers to ask about. Let them be weak for a few minutes, since they have spent all day fighting to be strong. Tell them they are amazing parents. Tell them that you are there for them.
And don't forget the siblings! Sometimes they are in much need of some personal attention. Take them out for an ice cream, or play a game with them. Let them know how wonderful they are, and how much good that they do every day by being a sibling to the one with autism. Let me talk about it. Let them know you understand how hard it can be, and how unfair it might seem sometimes. But also let them talk about other things, things that are important to them. Give them your undivided attention, because that is something they probably don't get alot of. Ask them questions about their lives, sports, school, friends. Don't judge them for being selfish or mean if they get angry at autism. We all do sometimes, and it is nice to have a safe place to let it out.
As for the child with autism, what can you do for them personally? It all depends on the child, how well you know them, and what makes them tick (or go off like a time bomb). If you are close to them, spend some quality time with them. Connect with them on a personal level. Find out what interests them, and share that together. You have to be careful to follow their routines and rules and structure, however. You don't want to force yourself on them, thinking you are doing your good deed, but completely freaking them out in the process. Learn what their favorite music is, or movie, or book, or sport. Bring them something little that represents that, and see where that leads. Take it slow and follow their cues. You can do more harm than good if you are trying to bond with an autistic child and you are not paying attentions to what they need, or want, or like. You can freak them out in a second if you come on too strong. Watch their eyes, and their hands, and their face. Be careful of body contact. Some crave it, some are horrified by it. If you don't know, please ask first. If you are trying to connect with them and it doesn't seem to be working, don't get frustrated or mad. Stop and take a look at why it isn't working. Sometimes it takes them a while to warm up to you. Sometimes you might think you have made no impact at all, but later they will be talking all about you and everything you said and did. I have seen that happen so many times.
All of these things may seem so small, and they may not seem like important things to do for autism awareness month. But they are huge, and they get right to the heart of autism awareness. All of these things are YOU showing that you are aware of autism, and you want to help out and support those affected where they need it most. They need it in the day to day activities. They need to know that they are not alone. You can go to a big rally, or walk in a walk, or write a big check, but at the end of the day, autism is still there. Sometimes the little gestures mean so much more. And they are never forgotten. I remember every time someone has done something for me and Katie, and my family. I remember every conversation, every hug, every listening ear.
There are a few things that you do not want to do, or to say, to families affected by autism. You do not want to tell them they are lucky to have other children. You do not want to tell them, "But they look so normal!" Please do not tell them about every article and news story and internet link that deals with autism. Sometimes we do not want to read about it any more. Sometimes we do not want to see what others like us are going through. At some point we might want to reach out and see how others deal with autism, but I know in the early years, if I saw one more magazine clipping about autism, I would cry. I didn't want to watch it on TV because I lived it every day. It is easier now, but you never know what point the family might be at. Never assume someone is autistic just because of their behavior or speech. Don't ask their family if they are. If they want you to know, they will tell you. Sometimes the family is in denial, or sometimes there isn't anything wrong with them at all. You can't assume you know what autism looks like, and you might end up offending a lot of people that way. Don't force your good deeds upon families affected by autims. If you want to offer to babysit, or cook, or do whatever, please offer. But also know when to accept a "no, thank you" without being offended. Sometimes others good deeds just don't fit in with what the child needs or wants.
You don't have to spend a lot of money to support autism awareness. You don't have to spend any money at all. Your support, and your kindness, and your patience are the most important things you can give to help us all in our Adventures in Autism.
There are quite a few autism charities and organizations that are in need of support. Autism Speaks, the Autism Society of America, and Jacks Place for Autism are just a few if you are looking for more of making a financial contribution. They do research, are advocates for the children, provide resources and information, and bring the families together.
But what if you personally know someone with autism? How can you help out? It all depends on how well you know the family. If you are close to the family, but not the child, you can do something nice for the whole family. When a child has autism, the entire family is affected, and sometimes it is nice to acknowledge that fact by recognizing how much they all do for the child. Sometimes just giving them some recognition goes a long way. Buying them dinner one night, or making them dinner. If you feel comfortable enough with the child, you can babysit for a few hours so the parents can go out for some alone time. Bring the parents a bottle of wine. Or a case of beer. Or a gift card out to dinner. Stay later when the kids are in bed and just let them talk. Let them vent, let them cry. Let them voice all their worries and fears that no one ever bothers to ask about. Let them be weak for a few minutes, since they have spent all day fighting to be strong. Tell them they are amazing parents. Tell them that you are there for them.
And don't forget the siblings! Sometimes they are in much need of some personal attention. Take them out for an ice cream, or play a game with them. Let them know how wonderful they are, and how much good that they do every day by being a sibling to the one with autism. Let me talk about it. Let them know you understand how hard it can be, and how unfair it might seem sometimes. But also let them talk about other things, things that are important to them. Give them your undivided attention, because that is something they probably don't get alot of. Ask them questions about their lives, sports, school, friends. Don't judge them for being selfish or mean if they get angry at autism. We all do sometimes, and it is nice to have a safe place to let it out.
As for the child with autism, what can you do for them personally? It all depends on the child, how well you know them, and what makes them tick (or go off like a time bomb). If you are close to them, spend some quality time with them. Connect with them on a personal level. Find out what interests them, and share that together. You have to be careful to follow their routines and rules and structure, however. You don't want to force yourself on them, thinking you are doing your good deed, but completely freaking them out in the process. Learn what their favorite music is, or movie, or book, or sport. Bring them something little that represents that, and see where that leads. Take it slow and follow their cues. You can do more harm than good if you are trying to bond with an autistic child and you are not paying attentions to what they need, or want, or like. You can freak them out in a second if you come on too strong. Watch their eyes, and their hands, and their face. Be careful of body contact. Some crave it, some are horrified by it. If you don't know, please ask first. If you are trying to connect with them and it doesn't seem to be working, don't get frustrated or mad. Stop and take a look at why it isn't working. Sometimes it takes them a while to warm up to you. Sometimes you might think you have made no impact at all, but later they will be talking all about you and everything you said and did. I have seen that happen so many times.
All of these things may seem so small, and they may not seem like important things to do for autism awareness month. But they are huge, and they get right to the heart of autism awareness. All of these things are YOU showing that you are aware of autism, and you want to help out and support those affected where they need it most. They need it in the day to day activities. They need to know that they are not alone. You can go to a big rally, or walk in a walk, or write a big check, but at the end of the day, autism is still there. Sometimes the little gestures mean so much more. And they are never forgotten. I remember every time someone has done something for me and Katie, and my family. I remember every conversation, every hug, every listening ear.
There are a few things that you do not want to do, or to say, to families affected by autism. You do not want to tell them they are lucky to have other children. You do not want to tell them, "But they look so normal!" Please do not tell them about every article and news story and internet link that deals with autism. Sometimes we do not want to read about it any more. Sometimes we do not want to see what others like us are going through. At some point we might want to reach out and see how others deal with autism, but I know in the early years, if I saw one more magazine clipping about autism, I would cry. I didn't want to watch it on TV because I lived it every day. It is easier now, but you never know what point the family might be at. Never assume someone is autistic just because of their behavior or speech. Don't ask their family if they are. If they want you to know, they will tell you. Sometimes the family is in denial, or sometimes there isn't anything wrong with them at all. You can't assume you know what autism looks like, and you might end up offending a lot of people that way. Don't force your good deeds upon families affected by autims. If you want to offer to babysit, or cook, or do whatever, please offer. But also know when to accept a "no, thank you" without being offended. Sometimes others good deeds just don't fit in with what the child needs or wants.
You don't have to spend a lot of money to support autism awareness. You don't have to spend any money at all. Your support, and your kindness, and your patience are the most important things you can give to help us all in our Adventures in Autism.
Saturday, March 31, 2012
Take Me Out to the Ballgame
It's softball season once again. My oldest daughter loves to play softball and is on the high school team, and in the summer, a travel team. I love to watch her play. She really comes alive when she is out there on the field. Softball is probably the one thing that she is best at, that she is the most passionate about, and what she works the hardest for, year round. Unfortunately, softball games are very long, can be very boring if you aren't "into" it, and are always outside where you can encounter such environmental extremes from freezing to boiling hot. There is no in between. If by chance you get a beautiful day for a game, there is probaly going to be a whipping wind or a ton of mosquitoes. None of these things trouble a die hard softball mom, but all of these make it very hard on a softball sister, especially an autistic one.
I try everything to make going to the game easier on Katie. I pack a lunch or dinner. I pack extra snacks. I pack extra kool aid and juice boxes. I pack music, and magazines and coloring books. I pack sweatshirts and blankets. I pack fans and water squirt bottles. I look like a bag lady when I go to the games. I have so much stuff that my in laws bought me a big wagon to lug it all around in. You just never know what is going to come up, what problem you might encounter, or what mood Katie will be in.
Eating her lunch usually will take us through half of the first inning. Then she will want to walk around. Then she will get into the bag of things to do. If I am lucky, she will spend some time listening to music. If I am REALLY lucky, someone from the family will be there that she will want to talk to. That takes us into the 2 nd inning. During this time, I am trying to watch the game, take pictures, talk to the other parents, and keep track of what is going on. Usually that is hard to do because Katie is constantly asking for something, complaining about the weather, or fighting with her little sister.
At some point during the game, it will become too much for Katie. If I am really lucky that day, my husband will be there to help, but usually he is working. If he is there, one of us can take her home if we are close by, or take her to the car to sit. If I am by myself, I will have to miss most of the game, trying to get Katie to the car without making a total scene. She is usually crying by this point, what I call " going out in a blaze of glory". Everyone is staring, we are all embarrassed, and I will not be able to watch the rest of the game. This is the hardest part for me, because I feel like I have to choose between my children. I am used to doing this, because when you have 3 children, you inevitably have to choose from time to time. But with softball games, I always have to choose Katie in order to not create a huge scene. I regret having to miss the rest of the game, and I regret having to do it every single time. That is one of the reasons I try to do so much for my other two children. Chaperone dances and field trips, help out in their classrooms, pick them and their friends up from school or practices and being them snacks. I try to do more, because at some point I will have to leave them when they are doing their best. I will have to leave them when they are at the top of their game. Sometimes, my Adventures in Autism force me to take my ball and go home. I am not complaining. I do what I have to do in the moment that it is needed. I just wanted everyone to know why we leave in a blaze of glory.
I try everything to make going to the game easier on Katie. I pack a lunch or dinner. I pack extra snacks. I pack extra kool aid and juice boxes. I pack music, and magazines and coloring books. I pack sweatshirts and blankets. I pack fans and water squirt bottles. I look like a bag lady when I go to the games. I have so much stuff that my in laws bought me a big wagon to lug it all around in. You just never know what is going to come up, what problem you might encounter, or what mood Katie will be in.
Eating her lunch usually will take us through half of the first inning. Then she will want to walk around. Then she will get into the bag of things to do. If I am lucky, she will spend some time listening to music. If I am REALLY lucky, someone from the family will be there that she will want to talk to. That takes us into the 2 nd inning. During this time, I am trying to watch the game, take pictures, talk to the other parents, and keep track of what is going on. Usually that is hard to do because Katie is constantly asking for something, complaining about the weather, or fighting with her little sister.
At some point during the game, it will become too much for Katie. If I am really lucky that day, my husband will be there to help, but usually he is working. If he is there, one of us can take her home if we are close by, or take her to the car to sit. If I am by myself, I will have to miss most of the game, trying to get Katie to the car without making a total scene. She is usually crying by this point, what I call " going out in a blaze of glory". Everyone is staring, we are all embarrassed, and I will not be able to watch the rest of the game. This is the hardest part for me, because I feel like I have to choose between my children. I am used to doing this, because when you have 3 children, you inevitably have to choose from time to time. But with softball games, I always have to choose Katie in order to not create a huge scene. I regret having to miss the rest of the game, and I regret having to do it every single time. That is one of the reasons I try to do so much for my other two children. Chaperone dances and field trips, help out in their classrooms, pick them and their friends up from school or practices and being them snacks. I try to do more, because at some point I will have to leave them when they are doing their best. I will have to leave them when they are at the top of their game. Sometimes, my Adventures in Autism force me to take my ball and go home. I am not complaining. I do what I have to do in the moment that it is needed. I just wanted everyone to know why we leave in a blaze of glory.
Thursday, March 22, 2012
Going to the movies
To say Katie is easily distracted would be putting it mildly. If she is interested in something, I try not to distract her in any way, because when she looses that" connection", there is just no getting it back. She isn 't into books, doesn't like to watch too much TV, and doesn't really sit still to watch a movie. I have been taking her to the movies since she was small, and my mom and my aunt like to take her and all my girls, to watch a movie at the theater and have a nice day out. As you might imagine, taking an autistic child to the movies is a challenge. I am brave ( and a little stupid), but I also don't want any of my children to miss out on anything just because Katie has autism and the challenges that come with it. So off to the movies we go.
Many, many children with autism have sensory issues. For those of you who don't know what these are, think about a time when you have had a really REALLY bad headache. Everything bothers you, right? The lights are too bright, every sound is too loud, sometimes even smells can make you crazy. Not a headache sufferer? Think about when you are overtired or even hungover. A door slamming, a kid whining, all can put your senses on edge. This is what it is like for a lot of children with autism every day, every minute of their life. I don't know how they even function, to be honest. I went to a workshop on autism that a teacher put on, and she played a recording of distracting sounds while we were trying to listen to instructions. It was unreal, and that was just a few minutes example of what these children go through.
Now picture what it must be like for these children at the movies. The sound is really loud. There are other people there talking. They smell popcorn and candy ( some of which they might not be able to have for dietary issues). It is dark. The doors are closed. They are expected to sit still for 2 hours and not fidget and not talk or dance or sing along. The general public does not take kindly to interruptions at movies. My family was actually shushed by an older couple when they were laughing at a rated G Disney movie! Sometimes when you expect a place to be safe and accepting, it is not that way at all. Do you see the difficulties that might arise in a movie theater with an autistic child? Now imagine spending a lot of money on going to the movies, and having to leave half way through because your child is freaking out, or bothering someone, or can't sit still, or the movie is too loud, or they are scared of the dark. Big disappointment.
A few years ago my mother was looking to do a project for her Kiwanis club. The organization is based on helping children in their community, and as the president that year, she wanted to plan an activity for local autistic children. She had asked me what some ideas might be that these children might enjoy, and after a couple of suggestions, we came up with a movie day. What the club did was rent an entire movie theater, and invite all the local autistic children to come with their families for free. Then they arranged to make it more comfortable for autistic children by keeping the sound lower, leaving the lights on, and leaving the doors propped open. Since the movie was free, it eased the guilt a bit if the family had to leave early. Since all the families were familiar with autism, the children felt comfortable moving around the theater, singing or dancing if they wanted, talking and laughing. The club also made up goodie bags for all the children, and were there to greet the families and assist them in any way. This movie day was so successful that the club has made it an annual event.
If you are not familiar with a disability, sometimes you do not know the hardships that can occur because of it. A simple thing like going to the movies can seem so easy, but with autism, it can be a real nightmare. Katie has grown up a lot in the last few years, and we are more comfortable with seeing a regular movie now and then, but it is nice that the Kiwanis club makes movie going easier for those of us on our Adventures in Autism.
Many, many children with autism have sensory issues. For those of you who don't know what these are, think about a time when you have had a really REALLY bad headache. Everything bothers you, right? The lights are too bright, every sound is too loud, sometimes even smells can make you crazy. Not a headache sufferer? Think about when you are overtired or even hungover. A door slamming, a kid whining, all can put your senses on edge. This is what it is like for a lot of children with autism every day, every minute of their life. I don't know how they even function, to be honest. I went to a workshop on autism that a teacher put on, and she played a recording of distracting sounds while we were trying to listen to instructions. It was unreal, and that was just a few minutes example of what these children go through.
Now picture what it must be like for these children at the movies. The sound is really loud. There are other people there talking. They smell popcorn and candy ( some of which they might not be able to have for dietary issues). It is dark. The doors are closed. They are expected to sit still for 2 hours and not fidget and not talk or dance or sing along. The general public does not take kindly to interruptions at movies. My family was actually shushed by an older couple when they were laughing at a rated G Disney movie! Sometimes when you expect a place to be safe and accepting, it is not that way at all. Do you see the difficulties that might arise in a movie theater with an autistic child? Now imagine spending a lot of money on going to the movies, and having to leave half way through because your child is freaking out, or bothering someone, or can't sit still, or the movie is too loud, or they are scared of the dark. Big disappointment.
A few years ago my mother was looking to do a project for her Kiwanis club. The organization is based on helping children in their community, and as the president that year, she wanted to plan an activity for local autistic children. She had asked me what some ideas might be that these children might enjoy, and after a couple of suggestions, we came up with a movie day. What the club did was rent an entire movie theater, and invite all the local autistic children to come with their families for free. Then they arranged to make it more comfortable for autistic children by keeping the sound lower, leaving the lights on, and leaving the doors propped open. Since the movie was free, it eased the guilt a bit if the family had to leave early. Since all the families were familiar with autism, the children felt comfortable moving around the theater, singing or dancing if they wanted, talking and laughing. The club also made up goodie bags for all the children, and were there to greet the families and assist them in any way. This movie day was so successful that the club has made it an annual event.
If you are not familiar with a disability, sometimes you do not know the hardships that can occur because of it. A simple thing like going to the movies can seem so easy, but with autism, it can be a real nightmare. Katie has grown up a lot in the last few years, and we are more comfortable with seeing a regular movie now and then, but it is nice that the Kiwanis club makes movie going easier for those of us on our Adventures in Autism.
Monday, March 19, 2012
Inside Our World
When I started this blog before Christmas, I had no idea what I was getting myself into. I thought that I would just sit down and put my thoughts about Autism into words, and maybe a few people might read it, maybe a few people might enjoy learning a little more about how Autism plays itself out day to day. After all, you can read about Autism in the paper, see it on TV, you might know someone who has it, but to actually live it is a different story. I had no idea how many people would actually read my blog, and reach out to me and tell me what it has meant to them. It has been a very humbling experience, to say the least. I have had a few speed bumps along the way, of course. Some people have thought that I was lecturing them, or calling them out on their perceived wrongdoings, but hopefully I have cleared up any misconceptions about my intentions for my writings.
I never thought that there would ever be a silver lining to this very complicated diagnosis. I never imagined that I would gain so much, or grow so much, or learn so much from my daughter having Autism. I never knew that blogging about my experiences would connect me to other people in such a deep way. I have heard from old high school classmates, far away relatives, and "friends of friends" that all don't know me personally, or at least don't know me well, but still feel like they have a better understanding of our world because of the stories that I have written. I am not a professional author or journalist by trade. I did have a children's book on Autism published (that I have yet to break even on), but I am just a simple mom. I write about the simple tragedies and triumphs and tribulations that Katie encounters. I am honest and I am blunt, but I am very aware of the fact that other people are reading this, so I try to censor a bit of what I say. I try not to be bold or brass or cynical or egotistical, but sometimes when I read what I have written, I stop and question myself. "Does that sound like I am too proud of myself, does that sound like I am whining about my lot in life?" I hope that if you do not know me well, you do not leave my blog with those impressions, because I am my own hardest critic.
I also hope that I don't leave the impression that our lives are all doom and gloom. We have great lives. We have a lot of fun with our family and friends. Katie loves school, her friends, her sports activities both with her autistic friends and her other friends. She loves going to catechism and bible school, going on vacation and swimming in our pool. She loves her family more than anything, especially her cousins. As her mom, I also love my life. I have a wonderful job, fabulously understanding friends, a supportive family, and an amazing husband. I have 2 other beautiful daughters that keep me going crazy. Being Katie's mom is a full time activity, but I also do many things at my kid's schools and at church. Running my kids all over town keeps me busy and happy as well. Finding a balance between the good and the craziness of Autism has taken awhile, but I don't want to scare off any parents who children have been newly diagnosed with Autism. There is life after. There is a good life after, if you want to make it that way. You just have to find out what works for your child, what works for you, and take it day by day.
When I was younger, if I had painted a picture of what my life would become, it would look nothing like what it has turned out to be. The characters would be the same, but the lifestyle would be totally different. I would have had totally different friends, probably a different work schedule, and a completely different outlook on life. I know that I wouldn't have appreciated the little things in life that way I do now. I wouldn't know the depth of compassion and generosity that others have shown me. It is devastating to image that other picture, so I try not to think about it too much. How can I dwell on that picture, without eliminating all that is wonderful about my life right now? If you have a child that is close to you, that is affected by Autism, I hope that you can find in my writings something that helps you in your everyday adventures. I hope that you can see a little bit of your life, and know that you are not alone out there. That you can find some "normal" in the things that happen to your child, because our normal is a little different from everyone else's. If you don't know Autism personally, I hope that you read to learn more, to understand more. When you see Katie and me stumbling along, living our Adventures in Autism, I hope that you can stop and smile, and know that we will be just fine. Thank you for reading.
I never thought that there would ever be a silver lining to this very complicated diagnosis. I never imagined that I would gain so much, or grow so much, or learn so much from my daughter having Autism. I never knew that blogging about my experiences would connect me to other people in such a deep way. I have heard from old high school classmates, far away relatives, and "friends of friends" that all don't know me personally, or at least don't know me well, but still feel like they have a better understanding of our world because of the stories that I have written. I am not a professional author or journalist by trade. I did have a children's book on Autism published (that I have yet to break even on), but I am just a simple mom. I write about the simple tragedies and triumphs and tribulations that Katie encounters. I am honest and I am blunt, but I am very aware of the fact that other people are reading this, so I try to censor a bit of what I say. I try not to be bold or brass or cynical or egotistical, but sometimes when I read what I have written, I stop and question myself. "Does that sound like I am too proud of myself, does that sound like I am whining about my lot in life?" I hope that if you do not know me well, you do not leave my blog with those impressions, because I am my own hardest critic.
I also hope that I don't leave the impression that our lives are all doom and gloom. We have great lives. We have a lot of fun with our family and friends. Katie loves school, her friends, her sports activities both with her autistic friends and her other friends. She loves going to catechism and bible school, going on vacation and swimming in our pool. She loves her family more than anything, especially her cousins. As her mom, I also love my life. I have a wonderful job, fabulously understanding friends, a supportive family, and an amazing husband. I have 2 other beautiful daughters that keep me going crazy. Being Katie's mom is a full time activity, but I also do many things at my kid's schools and at church. Running my kids all over town keeps me busy and happy as well. Finding a balance between the good and the craziness of Autism has taken awhile, but I don't want to scare off any parents who children have been newly diagnosed with Autism. There is life after. There is a good life after, if you want to make it that way. You just have to find out what works for your child, what works for you, and take it day by day.
When I was younger, if I had painted a picture of what my life would become, it would look nothing like what it has turned out to be. The characters would be the same, but the lifestyle would be totally different. I would have had totally different friends, probably a different work schedule, and a completely different outlook on life. I know that I wouldn't have appreciated the little things in life that way I do now. I wouldn't know the depth of compassion and generosity that others have shown me. It is devastating to image that other picture, so I try not to think about it too much. How can I dwell on that picture, without eliminating all that is wonderful about my life right now? If you have a child that is close to you, that is affected by Autism, I hope that you can find in my writings something that helps you in your everyday adventures. I hope that you can see a little bit of your life, and know that you are not alone out there. That you can find some "normal" in the things that happen to your child, because our normal is a little different from everyone else's. If you don't know Autism personally, I hope that you read to learn more, to understand more. When you see Katie and me stumbling along, living our Adventures in Autism, I hope that you can stop and smile, and know that we will be just fine. Thank you for reading.
Wednesday, March 14, 2012
Gift Cards
Today is my husband's birthday. Like most men, he is extremely difficult to shop for. What he needs, he buys when he needs it. What he wants, he buys when he wants it. That doesn't leave us much to choose from when we want to celebrate him and shower him with presents. I have spent 22 years trying to figure out what to give to him, failing miserably. There was one bad Christmas that I bought him a black IOU sweater. Two problems with that; he hates black and he hates sweaters. I think the only success I have had was the Michigan leather jacket and .....I think that is it. Lately I have resorted to buying him a bag full of snacks. (The way to a man's heart is through his stomach, right?)
For his birthday, my husband received many cards in the mail, all of which contained gift cards to various restaurants. Not one of the gift cards were the same. These people have learned to do it the right way. Don't know what to buy him? Get him a gift card! He loves to eat, right? You don't just want to send him money, right? You want him to know that you are thinking about him and celebrate his birthday, right? Gift card!
So what does any of this have to do with my Adventures in Autism? When you have a child with a disability, the last thing you think about doing is going out and treating yourself. If you have had a hard parenting day, all you want to do is collapse on the coach and watch TV once they are in bed. You certainly hate to dump your difficult child on someone else to deal with so you can go out and enjoy yourself, especially when they are little and you can barely control them yourself. Babysitters ( i.e. Grandparents) are used for work purposes and emergency purposes only, maybe an occasional wedding. Other family members have offered, but there is only so much you really want to dump on them.
This is where gift cards come in to play. If you give my husband a gift card, you are sending a number of different messages. One, you think enough of him to give him a present. Two, you think that he not only deserves a present, but a night out on the town with his lovely wife. Three, you are giving him permission to relax, if even for a few hours, and enjoy himself and enjoy a good meal ( and enjoy the company of the aforementioned wife). This is just the excuse we are looking for. We feel obligated to use the gift card, we don't want them to go to waste, and we know that the giver really wants us to take advantage of the opportunity as well. It is like a " get out of jail free" card. You don't have to use it right away, you can save it for when you need it most. You can make plans to go out, but also know that if the plans fall through, the gift card is still there, reminding you that your night out is all gift wrapped and ready to go. Because believe me, plans fall through. People get sick, Autism rears it's ugly head, kids fight, work intervenes, family calls. But that gift card sits there, saying, " Hey, I am here waiting for you. I am a few hours of deep breaths and silly stories and making plans and reconnecting with the love of your life."
Autism is hard. Being a parent is hard. Parents put their children first, always. Autism makes itself first, always. And if you think about it, most people have their children grow up, become more responsible, become babysitters themselves. They have a 12 year window or so that they need to get babysitters for their children, that they need to have someone else step in if they "step out". With Autism it is different. For most of us who have Autistic children, we might never leave them alone. They might live with us forever, and might need constant supervision forever. There are other people that will help at times, but we are talking about a lifetime of needing a sitter. A lifetime of asking for favors from others, just so we can get a night out together. So keep sending the gift cards, because that is your way of saying, " We love you, we love Katie, and we know how much you need a night out". It also shows how much you support us as we take these Adventures in Autism as a family.
**** Side note: After reading this blog, my husband asked if I was "pulling a Katie", meaning asking people to feel sorry for us and send gift cards. I am NOT doing that, so please don't actually send us gift cards. It was just a point that I was making. Please don't take me literally, or my husband will not let me blog anymore. (I am also kidding about that, he couldn't stop me if he tried!)
For his birthday, my husband received many cards in the mail, all of which contained gift cards to various restaurants. Not one of the gift cards were the same. These people have learned to do it the right way. Don't know what to buy him? Get him a gift card! He loves to eat, right? You don't just want to send him money, right? You want him to know that you are thinking about him and celebrate his birthday, right? Gift card!
So what does any of this have to do with my Adventures in Autism? When you have a child with a disability, the last thing you think about doing is going out and treating yourself. If you have had a hard parenting day, all you want to do is collapse on the coach and watch TV once they are in bed. You certainly hate to dump your difficult child on someone else to deal with so you can go out and enjoy yourself, especially when they are little and you can barely control them yourself. Babysitters ( i.e. Grandparents) are used for work purposes and emergency purposes only, maybe an occasional wedding. Other family members have offered, but there is only so much you really want to dump on them.
This is where gift cards come in to play. If you give my husband a gift card, you are sending a number of different messages. One, you think enough of him to give him a present. Two, you think that he not only deserves a present, but a night out on the town with his lovely wife. Three, you are giving him permission to relax, if even for a few hours, and enjoy himself and enjoy a good meal ( and enjoy the company of the aforementioned wife). This is just the excuse we are looking for. We feel obligated to use the gift card, we don't want them to go to waste, and we know that the giver really wants us to take advantage of the opportunity as well. It is like a " get out of jail free" card. You don't have to use it right away, you can save it for when you need it most. You can make plans to go out, but also know that if the plans fall through, the gift card is still there, reminding you that your night out is all gift wrapped and ready to go. Because believe me, plans fall through. People get sick, Autism rears it's ugly head, kids fight, work intervenes, family calls. But that gift card sits there, saying, " Hey, I am here waiting for you. I am a few hours of deep breaths and silly stories and making plans and reconnecting with the love of your life."
Autism is hard. Being a parent is hard. Parents put their children first, always. Autism makes itself first, always. And if you think about it, most people have their children grow up, become more responsible, become babysitters themselves. They have a 12 year window or so that they need to get babysitters for their children, that they need to have someone else step in if they "step out". With Autism it is different. For most of us who have Autistic children, we might never leave them alone. They might live with us forever, and might need constant supervision forever. There are other people that will help at times, but we are talking about a lifetime of needing a sitter. A lifetime of asking for favors from others, just so we can get a night out together. So keep sending the gift cards, because that is your way of saying, " We love you, we love Katie, and we know how much you need a night out". It also shows how much you support us as we take these Adventures in Autism as a family.
**** Side note: After reading this blog, my husband asked if I was "pulling a Katie", meaning asking people to feel sorry for us and send gift cards. I am NOT doing that, so please don't actually send us gift cards. It was just a point that I was making. Please don't take me literally, or my husband will not let me blog anymore. (I am also kidding about that, he couldn't stop me if he tried!)
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