"Jack, I'm not going to tell you again to stop unrolling the toilet paper roll all over the back seat of the car."
"Buttt... The werewolves are fighting in the mountain, and there's Dr. Phil with a mask on because we need ropes and bandages. Get it together, Dad! And I'm not talking about this."
Did you see what he just did? Mythical creatures, some misinformation (Dr. Phil was added for the element of confusion), and a lot of 5 year old rage means it's impossible to argue any further. Game over. Child: 1; Parents: left stammering and gesturing. You can't reason with the unreasonable.
Unfortunately, this was just a moment in our day. This kind of dialog seems to be the norm for the Everett family for the foreseeable future as we can't get the kid to make any kind of sense. Ever. There are dragons that keep him from taking his clothes to the laundry, tiny bones in his ears that make his brain hurt so bad that he can't hear me say that I want him to eat his chicken and pirates pop up in the strangest places to entice him to hit his brother for no discern-able reason. My favorite is when he tells us that Miss Uta (his teacher) told him to tell us that it's okay for him to have ice cream and popcorn for dinner and Optimus Prime decided that we are supposed to let him play Angry Birds on our phones until the battery dies. Why am I never included in these major decisions? Why aren't the parents invited to sit in on the council meeting that holds a vote on what he wears, eats, plays and does? I'll tell you why. Because we haven't got it together, that's why. We are un-hip, not cool and totally lame. We are completely mainstream people who are trying to raise little people who are the exact opposite of mainstream. We eat chicken and fish while he craves green eggs and ham.
Jordan and I are walking a fine line between letting him have a little room to explore the worlds that are possible to only him and losing ourselves in his crazy. I heard my husband ask Jack for some condiments to go with the order of delusions that Jack was feeding him and realized that we are both sometimes very close to falling off the CLIFFS OF INSANITY! Is there an eventual end to the madness of trying to find new and inventive ways to exclude a diaper box named Whisper Dan from family activities without hurting Jack's feelings? Or am I going to have to make room for WD at next year's Thanksgiving table? Is this why my mom is slightly fuzzy? Because it's a vicious cycle that repeats itself with every child/parent relationship? If that is the case, I whole-heartedly apologize to you, Mom. I'm thankful that after raising four of us to adulthood you are still able to even tie your shoes without drooling on the floor. Something that I wasn't even capable of this morning. How long can I tread water in a 5 year olds subconscious before I go under forever? I need to get away from the tiny John Nash for a little bit each week before I stop thinking like me, and start thinking like him. I need to get a hobby that isn't kid related. Maybe macrame. In the meantime... "Put a little mustard on mine, Captain Crazy!"
Wednesday, April 24, 2013
Monday, April 8, 2013
Light it up, people!
Having children with autism can be challenging. And terrifying... overwhelming, lonely, heartbreaking, frustrating, stressful and maddening. I've never really talked to anyone about how autism has affected our family because it's really hard sometimes to not just fall apart in the telling. I lose sleep with worrying about my boys, but especially about little Mitch.
Everything that I've read about children who grow up having autism describes lonely people who never had any friends, not because they didn't want them- but because they didn't know how to reach out and make them. Or because they were so hard to communicate with that people didn't make the effort to get to know them. Is this what my son has to look forward to? The thought has me crying quietly into my pillow some nights. I see him try in his own way to make a connection with other kids, and I watch the kids look at him funny because they can't figure out what he's doing. Then they go on with their own games, leaving Mitch alone to mimic their movements from the sidelines. I know he thinks he is now playing with them, because he's doing what they are doing, but he won't be fooled for much longer. He's growing up, and soon he will begin to realize that he is so different, the other kids won't play with him. I have no ill feelings towards these other children, they aren't doing anything deliberately hurtful. They are just normal children immersed in play. They aren't behaving meanly or in a bullying manner, they just don't see what I see. A little boy who wants a friend. How do I protect my child from this hurt that I see on his horizon? How do I provide a way for him to be fulfilled with meaningful relationships?
Other worries include things like: Will he be able to hold down a job after he's grown, or do I need to be putting money aside now in order to make sure he's provided for in his later years? Can he go to a regular public school, or will he get kicked out as so many kids with autism are? How do I make sure he doesn't take that as another rejection of his not being good enough for society's standards? How do I know how much he comprehends when he keeps everything so bottled up? I'm scared that he will be hurt by something one of us does and we won't ever know to fix it so he lives in grief forever.
Along with all of this heartache and worry, there are moments of such incredible sweetness and joy that it drives away every doubt I have about my own ability to raise these children accordingly. In the midst of the chaos and destruction that is everyday life at our house, Mitch will astound us with the sweet sound of his untried voice saying my name for the first time in his 4 years of life. I was beginning the process of coming to terms with the possibility of never hearing it when he finally looked right at me and called it out in a squeaky mumble that moved me to tears.
He's making great strides in the language development area in the last few weeks. He's been working so hard every day to get farther along in his communication. Yesterday I was showing him different facial expressions and teaching him the word for each. His favorite was "happy" and he said "I'm happy" all afternoon. When I tucked him into bed a few hours later I told him to have happy dreams and as he tried to repeat it back to me, his little face was so frightened because he realized he had lost the word happy. I can't begin to describe the pride I felt as I watched him gather his courage to start from the beginning, slowly repeating it again and again until he remembered it. The look of relief on his face when he realized he could still say the word was something to see. A few minutes after I had shut the door to the boys' room, Jordan and I could hear a sound on the baby monitor. Our little guy was laying in the dark while the other boys were sleeping, softly practicing "happy dreams" over and over again.
Living where we do, it's hard to feel like we aren't alone in our struggles. I think it's hard for even a normal family to feel like they aren't alone here, let alone a family that needs special services. I read about support groups in big cities where parents of children with autism can get together and brainstorm, get/give advice or just chat. Every time I hear of something like this, I can't help feeling a bit jealous. I personally do not know anyone else with a child diagnosed with autism. I have no one to bounce ideas off of other than my husband, and basically we are just winging it. We read books and articles, and through a lot of trial and error we somehow make it through each day.
The reason I wrote all of this down wasn't to complain or make anyone feel sorry for us. That's the last thing I want. What I wanted was to give you an idea of how much of a difference it has made for us to see the world's support of what we do on a daily basis and to thank you. All of you. Everyone out there who has been lighting things up blue for Autism Awareness Month, you just got a great big cyber kiss on the cheek from the Everett family. It has meant so much to my husband and me to see all the blue out there in the world in support of people like Mitch. It gives us hope that not everyone will look at him differently, that someday he will have a best friend, and that he will be accepted into society with open arms. From the Eiffel Tower to the church down the street with a blue ribbon tied around the tree, each and every sighting is a gift; a visible prayer, hug and pat on the back all rolled into one. Every time I see another picture of a building lit up with blue lights in some place in Hungary or get a text saying that the tree trunks in Seattle have been painted blue, my heart grins and I feel encouraged and loved. What's more important, is that I feel like Mitch is loved too. That's an amazing feeling for someone who was feeling so alone just a few days ago, so keep it up, people! Bring on the BLUE!
Everything that I've read about children who grow up having autism describes lonely people who never had any friends, not because they didn't want them- but because they didn't know how to reach out and make them. Or because they were so hard to communicate with that people didn't make the effort to get to know them. Is this what my son has to look forward to? The thought has me crying quietly into my pillow some nights. I see him try in his own way to make a connection with other kids, and I watch the kids look at him funny because they can't figure out what he's doing. Then they go on with their own games, leaving Mitch alone to mimic their movements from the sidelines. I know he thinks he is now playing with them, because he's doing what they are doing, but he won't be fooled for much longer. He's growing up, and soon he will begin to realize that he is so different, the other kids won't play with him. I have no ill feelings towards these other children, they aren't doing anything deliberately hurtful. They are just normal children immersed in play. They aren't behaving meanly or in a bullying manner, they just don't see what I see. A little boy who wants a friend. How do I protect my child from this hurt that I see on his horizon? How do I provide a way for him to be fulfilled with meaningful relationships?
Other worries include things like: Will he be able to hold down a job after he's grown, or do I need to be putting money aside now in order to make sure he's provided for in his later years? Can he go to a regular public school, or will he get kicked out as so many kids with autism are? How do I make sure he doesn't take that as another rejection of his not being good enough for society's standards? How do I know how much he comprehends when he keeps everything so bottled up? I'm scared that he will be hurt by something one of us does and we won't ever know to fix it so he lives in grief forever.
Along with all of this heartache and worry, there are moments of such incredible sweetness and joy that it drives away every doubt I have about my own ability to raise these children accordingly. In the midst of the chaos and destruction that is everyday life at our house, Mitch will astound us with the sweet sound of his untried voice saying my name for the first time in his 4 years of life. I was beginning the process of coming to terms with the possibility of never hearing it when he finally looked right at me and called it out in a squeaky mumble that moved me to tears.
He's making great strides in the language development area in the last few weeks. He's been working so hard every day to get farther along in his communication. Yesterday I was showing him different facial expressions and teaching him the word for each. His favorite was "happy" and he said "I'm happy" all afternoon. When I tucked him into bed a few hours later I told him to have happy dreams and as he tried to repeat it back to me, his little face was so frightened because he realized he had lost the word happy. I can't begin to describe the pride I felt as I watched him gather his courage to start from the beginning, slowly repeating it again and again until he remembered it. The look of relief on his face when he realized he could still say the word was something to see. A few minutes after I had shut the door to the boys' room, Jordan and I could hear a sound on the baby monitor. Our little guy was laying in the dark while the other boys were sleeping, softly practicing "happy dreams" over and over again.
Living where we do, it's hard to feel like we aren't alone in our struggles. I think it's hard for even a normal family to feel like they aren't alone here, let alone a family that needs special services. I read about support groups in big cities where parents of children with autism can get together and brainstorm, get/give advice or just chat. Every time I hear of something like this, I can't help feeling a bit jealous. I personally do not know anyone else with a child diagnosed with autism. I have no one to bounce ideas off of other than my husband, and basically we are just winging it. We read books and articles, and through a lot of trial and error we somehow make it through each day.
The reason I wrote all of this down wasn't to complain or make anyone feel sorry for us. That's the last thing I want. What I wanted was to give you an idea of how much of a difference it has made for us to see the world's support of what we do on a daily basis and to thank you. All of you. Everyone out there who has been lighting things up blue for Autism Awareness Month, you just got a great big cyber kiss on the cheek from the Everett family. It has meant so much to my husband and me to see all the blue out there in the world in support of people like Mitch. It gives us hope that not everyone will look at him differently, that someday he will have a best friend, and that he will be accepted into society with open arms. From the Eiffel Tower to the church down the street with a blue ribbon tied around the tree, each and every sighting is a gift; a visible prayer, hug and pat on the back all rolled into one. Every time I see another picture of a building lit up with blue lights in some place in Hungary or get a text saying that the tree trunks in Seattle have been painted blue, my heart grins and I feel encouraged and loved. What's more important, is that I feel like Mitch is loved too. That's an amazing feeling for someone who was feeling so alone just a few days ago, so keep it up, people! Bring on the BLUE!
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