I have to be honest... I've spent a lot of time today dancing around something that's been bothering me. It seems silly, but I just have to share it.
While browsing on one of my favorite sites last weekend, I saw a post making fun of Autism. I won't post exactly what it said, because I try not to use the language it entailed, but it had a picture of a kid in a meltdown and, with stronger verbage, basically said that Autism is simply a diagnosis for being a jerk.
When I saw this, anger exploded all over me. Hurt. Frustration. All the times anyone ever looked at me crooked when Ryan was having a meltdown. All the pain just zapped me at once.
I wanted to do something.
I wanted that person to hurt. I wanted that person, whoever it was, to see that my sweet boy is not what he called him. My next thought was, "well, maybe this person is just misinformed."
Maybe.
But that kind of thing is why I sit here. It's why the open book of my life is splayed out on the internet. That hurt, that desperate feeling of wanting to be understood, of longing for hope... that's why I sit here. To share with you what we go through, not for sympathy or a pat on the back, but to give. I share in hopes that you who have been hurt by such insensitivity and ignorance will find a respite. I share in hopes that someone will find the only true hope while they are in my little corner of cyberspace. I share because I have to. God has given us the gift of life, the gift of having to learn to be understanding. He has given so many of us this tightrope called life with Autism to walk, and is standing there ready to carry us when our feet slip.
I share because He carries me.
I share because I've visited enough Autism sites and followed enough tweets to have an idea of the hurt and hopelessness and isolation so many families of Autism feel. How real it is. How a look, a word, a joke, an omitance... is a WAY bigger deal than it seems like it should be when you're on the receiving end.
I share because I LIVE THERE.
I share because from the bottom of my heart, I know, I get it, and I'm so sorry.
I share because I know how wonderful each of our kids are, neurotypical and neurodiverse, special needs and typical.
I also share because maybe someone will read who doesn't know Autism, and will be educated just enough to know to not glare or make a snarky comment. So that maybe some of these things intended as humor will be headed off... that maybe just one person won't have to hurt.
Because as we all know, the only true change comes from a changed heart. I'm not naive enough to think I'm saving the world through these little posts... but to me, encouraging even one heart is worth the world. So I will continue to carve time out to share our stories.
To whoever it was who decided to call my child and so many others an ugly name, your message in a bottle made it to me. So should my little message in a bottle make it back to you, you are forgiven.
To the rest of you, thanks for reading.
Showing posts with label insensitivity. Show all posts
Showing posts with label insensitivity. Show all posts
Monday, January 30, 2012
Monday, October 31, 2011
Nope, no cutesy costume pic. But feel free to post yours!
No, I'm not crazy about halloween, no I don't think you're evil if you love it. Really, it's cool. Do what you do. It makes it extra-unappealing to think of dressing the dude who is OCD about his shoes being tied just-so (extra hilarious when you realize he will only wear velcro shoes) dressed in a costume, pulling at it, miserable. The littles don't seem to care one way or the other. If, at some point, the kids start to beg and ask if they can trick-or-treat, we will revisit the topic. For now, we have a great time giving out candy as a family. Unless, of course, the event is on Friday night... or an unexpected Saturday when the kids are bathed and dressed for bed and we're about to start family devotions... yeah, that was last weekend.
When Eric and I were first married, and even when we were pregnant with Ryan, We sat on our front porch in Fort Worth with our dog, commenting on each family's costumes and of course handing out candy. And, as any newly married couple, discussing our childhood experiences with the holiday and dreaming about what we'd do with our kids. Yeah, that's hard to think about.
On the way to therapy today, in between reaching to the CD player to turn back to his favorite song, Ryan started to pick at his shoes. As he did, I looked (yes, carefully) at them and noticed out loud "oh, buddy... you need new shoes."
I know that a lot of kids get attached to shoes. I get that. I was one of them! I had this little pair of brown ballerina-type flats when I was a bit younger than Ryan. Mom couldn't get me out of them. When I went to see Nanny that summer, you can bet that was one of the first things we did. The Dillard's in Fort Smith, it was, where I picked out not one but two pretty new pairs of shoes. You've got to hand it to her... Nanny was geniusly creative. I know what she was thinking. She got me all tickled about new shoes, which is totally not hard to do, and tried to have the salesman throw the old ones away. We got all the way back to Heavener, and I asked for my old shoes. Didn't take many tears and we were back in Fort Smith the next day to pick them up. Nice try, Nanny. Nice try.
But Ryan, oh dear. As I reached down to do the "mommy toe pinch", I hoped desperately that I was going to be able to get through this without a trip to the shoe store, department store, or otherwise with him. The last time we bought shoes for Ryan with him in tow, I apologized to the saleslady as we walked in for the noise she was about to endure. She laughed.
I didn't. But she'd know soon enough.
It took all of ten minutes. With my nearly six-year-old on my shoulders (hubster had just had back surgery) it was a ready-set-go kind of deal. We went to his size, I pointed. Then we took a deep breath and removed a shoe. Literally, I held out his foot as he screamed, pulled my hair, and beat my head so his daddy could try the shoe on his foot. Once we found the ones that fit, were brown so he could wear them to school and church just fine, and were velcro closure, we checked out.
Yeah, I think the lady at the checkout got the point.
Most of the time, we're just different. When I go out with the littles, people talk to us, comment on how precious they are... but when Ryan's with us it's so often not that way. When he's screaming and beating his chest anywhere and folks are staring, we can't choose what looks or feels different. There are times when it's no big deal, but there are times when the different stings. Some times, like halloween, I can kinda decide that we're different because we want to be. No, we don't do halloween. We talk about Reformation Day, and we pass out candy because we want to give because we have been given so much. And some people like to dress up and trick or treat, which is fine for them. For me, it sounds like a nightmare. As for the scary stuff, I guess you could say I'm a chicken. I don't like to be scared. The whole scary-movie, haunted-house thing is lost on me. There are people who dig it, but there are also people who dig not having kids and love every sporty thing under the sun, and that's just not us. Ah, a real reason to be different that can, if I choose, have nothing to do with Autism, advocacy, or safety. Aaaaaaah. Yes, we choose not to participate. We have our reasons.
Then there are some things that I miss... like sorting through the candy. I was one of those kids who would sort the candy into several piles, categorizing it. I loved doing that, but I did that with M&M's and Skittles too, even when M&M's were only brown, light brown, yellow, orange and green. Guess who loved sorting through the candy too? Richie picked out little boxes of Lemonheads that we had planned to pass out. He lined them up by color, then made a little design or two out of them. Then he made a nice little ramp in the middle of a cute, colorful box highway.
As I listen to someone talk about what their kids will dress up as, where they'll trick or treat, and even whether or not they do Santa Claus, the Tooth Fairy and the Easter Bunny, my heart wants to scream "JUST BE GLAD THEY NOTICE." I want to launch into a dissertation on our reasoning behind this, that, and the other, and make darn sure they know to be sure they enjoy every last second of the neurotypical childhoods taking place all around them. Would I be entitled, even justified? Oh yes. In the world a lot of us live in (if you turn on a TV or pay attention at the checkout in the grocery store... sheesh), I'm entitled to splat my feelings all over someone's face, just because I felt them. Tell 'em. Give 'em hell. Put them in their place. How dare they flaunt their normal lives in front of my splattered heart and shattered nerves? I could go on and on with excuses stemming from childhood abuse, even, for things I say and what I can and can't handle and the decisions we make. But I do my best not to.
Yes, I have and will, in the proper setting and with the proper tone, remind someone gently to be a tad more aware of what they're saying. But anything I choose to say better be of a heart of humility and grace, not out of my own agenda. Putting someone in their place? My agenda. Fixing someone? My agenda. When my agenda doesn't align with God's agenda, disaster will ensue. I may not see it. The results may be delayed, and they may be invisible. To hurt someone just because I am hurt, insulted, or just too cranky that day is simply adding hurt to hurt. There are times when it is appropriate to speak up regarding someone else's choices, but these times must be chosen with the utmost humility and prayer, and incredibly carefully. Is life at stake? Safety? I mean, "Hey, don't throw that match into that gas can!" is a pretty safely chosen bet. But "you shouldn't let your children watch Spongebob"? Not so much. That's preference. No matter how strongly you feel about it, no matter how many strong arguments you may have against it, it's still not a life-or-death decision. As a wise person once said, "Does this need to be said? Does this need to be said by me? Does this need to be said by me right now?"
So yes, I hope you're out there trick-or-treating it up safely with your little Spongebobs, your Optimus Primes, your ghosties, your Sheriff Woodys, your princesses. Have a fabulous time! And thanks for bringing them to the house. We SO enjoy seeing them all dressed up! Enjoy sorting through the candy like I did with my mom. I will be here with my kids, in their regular clothes, having a regular night, save a little study about Reformation Day with my BFF, Eric. That and I'll be here ready to hand out candy, should there be any trick-or-stragglers left over from Saturday night. You know, people like me, who had no idea. And out of the appreciation of the grace that you and so many others... but mostly the Holy Trinity... extend to me, I will more than happily dump a load of candy in your little Angry Bird's plastic pumpkin. I will comment on what a cutie bug he is, and all because I mean it. And I will trust that you know what is best for your kids and yourself, as I know what is best for me and mine.
And when you come to the door and see my kids already in their jammies, or when you see us, get to know us, or read this and notice our differences daily, don't feel sorry. Please. We appreciate your smiles, your friendship, your words of encouragement when the day gets screamy right in front of you, and we're thankful for your prayer and all these things. We're learning to not just embrace but enjoy our different. We're learning to see the amazing in every personality difference, preference, and all the other behaviors that make us who we are. We're also seeing that each of us is just as different as the other, and Ryan's differences just seem to stick out a bit more. And this time, as far as halloween goes, difference is our choice. We've had a great day.
Blessed evening to you all, whether you've been trick or treating, trunk or treating, fall festivaling, remembering the 95 Theses, Diet of Worms, and other adventures of Martin Luther, or just hiding in your house with the porch light turned off.
And to all a good night.
When Eric and I were first married, and even when we were pregnant with Ryan, We sat on our front porch in Fort Worth with our dog, commenting on each family's costumes and of course handing out candy. And, as any newly married couple, discussing our childhood experiences with the holiday and dreaming about what we'd do with our kids. Yeah, that's hard to think about.
On the way to therapy today, in between reaching to the CD player to turn back to his favorite song, Ryan started to pick at his shoes. As he did, I looked (yes, carefully) at them and noticed out loud "oh, buddy... you need new shoes."
I know that a lot of kids get attached to shoes. I get that. I was one of them! I had this little pair of brown ballerina-type flats when I was a bit younger than Ryan. Mom couldn't get me out of them. When I went to see Nanny that summer, you can bet that was one of the first things we did. The Dillard's in Fort Smith, it was, where I picked out not one but two pretty new pairs of shoes. You've got to hand it to her... Nanny was geniusly creative. I know what she was thinking. She got me all tickled about new shoes, which is totally not hard to do, and tried to have the salesman throw the old ones away. We got all the way back to Heavener, and I asked for my old shoes. Didn't take many tears and we were back in Fort Smith the next day to pick them up. Nice try, Nanny. Nice try.
But Ryan, oh dear. As I reached down to do the "mommy toe pinch", I hoped desperately that I was going to be able to get through this without a trip to the shoe store, department store, or otherwise with him. The last time we bought shoes for Ryan with him in tow, I apologized to the saleslady as we walked in for the noise she was about to endure. She laughed.
I didn't. But she'd know soon enough.
It took all of ten minutes. With my nearly six-year-old on my shoulders (hubster had just had back surgery) it was a ready-set-go kind of deal. We went to his size, I pointed. Then we took a deep breath and removed a shoe. Literally, I held out his foot as he screamed, pulled my hair, and beat my head so his daddy could try the shoe on his foot. Once we found the ones that fit, were brown so he could wear them to school and church just fine, and were velcro closure, we checked out.
Yeah, I think the lady at the checkout got the point.
Most of the time, we're just different. When I go out with the littles, people talk to us, comment on how precious they are... but when Ryan's with us it's so often not that way. When he's screaming and beating his chest anywhere and folks are staring, we can't choose what looks or feels different. There are times when it's no big deal, but there are times when the different stings. Some times, like halloween, I can kinda decide that we're different because we want to be. No, we don't do halloween. We talk about Reformation Day, and we pass out candy because we want to give because we have been given so much. And some people like to dress up and trick or treat, which is fine for them. For me, it sounds like a nightmare. As for the scary stuff, I guess you could say I'm a chicken. I don't like to be scared. The whole scary-movie, haunted-house thing is lost on me. There are people who dig it, but there are also people who dig not having kids and love every sporty thing under the sun, and that's just not us. Ah, a real reason to be different that can, if I choose, have nothing to do with Autism, advocacy, or safety. Aaaaaaah. Yes, we choose not to participate. We have our reasons.
Then there are some things that I miss... like sorting through the candy. I was one of those kids who would sort the candy into several piles, categorizing it. I loved doing that, but I did that with M&M's and Skittles too, even when M&M's were only brown, light brown, yellow, orange and green. Guess who loved sorting through the candy too? Richie picked out little boxes of Lemonheads that we had planned to pass out. He lined them up by color, then made a little design or two out of them. Then he made a nice little ramp in the middle of a cute, colorful box highway.
As I listen to someone talk about what their kids will dress up as, where they'll trick or treat, and even whether or not they do Santa Claus, the Tooth Fairy and the Easter Bunny, my heart wants to scream "JUST BE GLAD THEY NOTICE." I want to launch into a dissertation on our reasoning behind this, that, and the other, and make darn sure they know to be sure they enjoy every last second of the neurotypical childhoods taking place all around them. Would I be entitled, even justified? Oh yes. In the world a lot of us live in (if you turn on a TV or pay attention at the checkout in the grocery store... sheesh), I'm entitled to splat my feelings all over someone's face, just because I felt them. Tell 'em. Give 'em hell. Put them in their place. How dare they flaunt their normal lives in front of my splattered heart and shattered nerves? I could go on and on with excuses stemming from childhood abuse, even, for things I say and what I can and can't handle and the decisions we make. But I do my best not to.
Yes, I have and will, in the proper setting and with the proper tone, remind someone gently to be a tad more aware of what they're saying. But anything I choose to say better be of a heart of humility and grace, not out of my own agenda. Putting someone in their place? My agenda. Fixing someone? My agenda. When my agenda doesn't align with God's agenda, disaster will ensue. I may not see it. The results may be delayed, and they may be invisible. To hurt someone just because I am hurt, insulted, or just too cranky that day is simply adding hurt to hurt. There are times when it is appropriate to speak up regarding someone else's choices, but these times must be chosen with the utmost humility and prayer, and incredibly carefully. Is life at stake? Safety? I mean, "Hey, don't throw that match into that gas can!" is a pretty safely chosen bet. But "you shouldn't let your children watch Spongebob"? Not so much. That's preference. No matter how strongly you feel about it, no matter how many strong arguments you may have against it, it's still not a life-or-death decision. As a wise person once said, "Does this need to be said? Does this need to be said by me? Does this need to be said by me right now?"
So yes, I hope you're out there trick-or-treating it up safely with your little Spongebobs, your Optimus Primes, your ghosties, your Sheriff Woodys, your princesses. Have a fabulous time! And thanks for bringing them to the house. We SO enjoy seeing them all dressed up! Enjoy sorting through the candy like I did with my mom. I will be here with my kids, in their regular clothes, having a regular night, save a little study about Reformation Day with my BFF, Eric. That and I'll be here ready to hand out candy, should there be any trick-or-stragglers left over from Saturday night. You know, people like me, who had no idea. And out of the appreciation of the grace that you and so many others... but mostly the Holy Trinity... extend to me, I will more than happily dump a load of candy in your little Angry Bird's plastic pumpkin. I will comment on what a cutie bug he is, and all because I mean it. And I will trust that you know what is best for your kids and yourself, as I know what is best for me and mine.
And when you come to the door and see my kids already in their jammies, or when you see us, get to know us, or read this and notice our differences daily, don't feel sorry. Please. We appreciate your smiles, your friendship, your words of encouragement when the day gets screamy right in front of you, and we're thankful for your prayer and all these things. We're learning to not just embrace but enjoy our different. We're learning to see the amazing in every personality difference, preference, and all the other behaviors that make us who we are. We're also seeing that each of us is just as different as the other, and Ryan's differences just seem to stick out a bit more. And this time, as far as halloween goes, difference is our choice. We've had a great day.
Blessed evening to you all, whether you've been trick or treating, trunk or treating, fall festivaling, remembering the 95 Theses, Diet of Worms, and other adventures of Martin Luther, or just hiding in your house with the porch light turned off.
And to all a good night.
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