It's supposed to rain today. And tomorrow. Then Thursday, it's supposed to be sunny. Yesterday, the weather website said it was a 60% chance. This morning, it was 80%. Now, it's 80% today, 100% tomorrow. They do their best, The Weather Channel, and I'm convinced that if anyone knows they do.
Thing is, right now it's pretty sunny out with just a few stray clouds. Guess that 20% chance of sun is working its magic.
Yeah, that's right. If there's a chance it could rain, there's also a chance it could be sunny. The experts work to tell us what's going to happen... or might happen... so that we may prepare accordingly. How we react to that forecast is up to us. We can pretend it doesn't exist, they don't know what they're talking about. But if you're planning an outdoor event, the "lalala, I can't hear you" approach to weather prediction is more than foolish.
Say you're planning an outdoor birthday party. They say it'll rain... oh... a good 80% chance on Monday. Then every day the prediction changes a bit here and there. What do you do? Plan for rain? Plan for no rain? Or maybe no rain but with a back up plan?
This is somewhat how I see our Ryan's diagnosis. It would be foolish to suggest that the experts are completely misinformed and there is no reason to do anything differently than we do with our other kids. I could just hire a baby sitter and go out for a date and let the chips fall where they may. I could take him out of therapy, because those trips are pretty tiring. They wear on the budget, the other kids, the van, and to a degree on Ryan. I could give up on our church attendance. It's hard to make that part of routine too. God is in charge, right? And if He's bigger than Autism, bigger than it all... even church... I should be able to do what's easy and it'll all fall in our laps, if He really loves us.
Or we could go the other way, allowing the statistics of children with severe classic autism as adults to frighten us to the point where our faith is paralyzed. We could meditate on the issues, the struggles, the things he can't do. We could, out of concern for his potential disappointment, just start telling him about how the likelihood of him participating in band, social things, excelling academically is terribly low. We could start preparing him that statistics show he'll not live on his own, that he'll have a hard time in college if he goes at all. We could wake up every day reminding ourselves of these things, too.
But you see, the forecast is just that. It's an expert's educated prediction of what will happen. To take this as gospel... as the decided end to the chapters and books of our lives... would be tragic. On the other hand, to ignore them and not prepare and work toward goals set by ourselves and people such as these would be worse than foolish. In this circumstance, I believe it's neglect.
So what do we do?
We wake up every day and do the things we can do. Parenting is interesting, and a ton of work- no matter what their challenges. We focus on their strengths, encourage, correct, hug, and train. We tell them how great they are, how handsome, beautiful, amazing, precious they are. We pray for them, we dream for them. We celebrate the wonderful times, the times their sheer presence in our lives takes our breath away and brings a lump to our throats. When things get rough, when our hearts are heavy for their behavior, fears, anxiety, choices, or when that lump in our throats is brought by the fact that we wish we could take away the unfairness of it all, we keep loving. We hang onto them and cry with them. We correct them, taking a mommy time out when needed.
I wish I could promise that the hard things will end, and that sunshine will be all you see after this one thing passes. I wish there was a cure for all the illnesses, disorders, syndromes, and disabilities. But more than that, I pray that we all... no matter what we face... will grasp hold of God's promises for us and our kids. That we will keep rising, working, fighting the beautiful fight, whatever yours is, with grace and integrity. That we will remember that, since we cannot see one another's struggles, we must choose to offer mercy and love, especially in the moment-to-moment of life, especially when no one is looking. And know that God sees, hears, and will do the things we cannot to the completion of his plan.
I pray not that the rain would end, or the rain would come... but that we will all learn to bask in the sun and dance in the rain.
Showing posts with label christian parenting. Show all posts
Showing posts with label christian parenting. Show all posts
Tuesday, January 24, 2012
Friday, October 28, 2011
Quittin' time, part 2
Sorry I made you wait for the rest of this. I keep thinking I'm going to have more time, and every time I think that something comes up. When will I learn? The bad news is my best friend is sick tonight so what I was hoping I'd be doing isn't going to happen. But the good news is I have the rest of the day (and I mean until like 1:00 tomorrow morning) to get the stuff done I need to do today. So here I am.
If you're wondering about part 1, click here. Now that we're all on the same page...
So after I left bible study, I reminded myself at times audibly that God is in control. There's always a reason. Always. Even when we don't know what it is, there's a reason. I went home, changed the littles' diapers and stuff, got what we needed and went to the school to get Ryan. I was almost sure that since his aid wasn't with him, I'd have to get the kids out and go in and get him, since I pick him up in the middle of the school day. Imagine my surprise to see his teacher bringing him out. When he got to the van, it went something like this:
Me: So how'd he do?
L: We're good.
Me: We're good? Oh, he had a good day?
L: No, we're GOOD.
Me: Um... you mean we don't need to hire someone else good?
L: I'd like to try it.
That last comment and the look on L's face I will remember for eternity.
She went on to describe how well he'd done since lunch the day before, when his aid had resigned. Not one meltdown. Little fits, but no meltdowns. Being the mommy I am, I had to make sure he was safe. Satisfied with her answer, I put my official mommy-seal on the deal and we agreed.
RYAN IS IN KINDERGARTEN WITHOUT AN AID!
Full inclusion. All day. Only someone to help with music and p.e.
After searching the van for and reattaching my chin, we headed to therapy. Soon as I was out of the school zone I called Eric. We both teared up. I think we both said "FOR REAL?!?!" about ten times. The only other thing that we could manage to utter was Praise God.
It has now been a week and a half. If Ryan's folder was still here, I'd show you the happy faces and "Great Day" markings on his behavior chart. I am still in utter disbelief.
I'm in disbelief that he's doing this! We are so proud of him! We are so proud of his teacher! We are so proud to be in a school district that makes the paperwork fit the kid instead of the kid fit the paperwork! I mean, he still needs some support. But when you're in a place where all the teachers actually really do care about the kids... all of the kids, not just the easy ones... kids like Ryan get a shot. They get a real shot. And when they fall, others pick them up, dust them off, and give them another shot. I cannot tell you how grateful I am for God's providence in all this. For the teachers, administration, the special programs department, his teacher form the last three years who still checks in on him, the aid who knew for whatever reason it was time to go... all of this, we are so grateful.
I don't know why God chose to give us all He's given us. I could begin listing it all, but don't think blogger would allow me the storage capacity. Just looking around in our family, just seeing our three kids smiling at us, is more than enough. We're healthy, my husband and I love each other, we still have my mother, his parents, and his Nana, we have our sisters and their husbands and families, and we have extended family. We have a fabulous church, wonderful friends, and a roof over our heads.
As King David said in 2 Samuel 7:18, "Who am I, O Lord God, and what is my house, that you have brought me thus far?"
Who am I, Lord? Who are we, that you have brought us this far?!
Thanks and much praise be to God!
If you're wondering about part 1, click here. Now that we're all on the same page...
So after I left bible study, I reminded myself at times audibly that God is in control. There's always a reason. Always. Even when we don't know what it is, there's a reason. I went home, changed the littles' diapers and stuff, got what we needed and went to the school to get Ryan. I was almost sure that since his aid wasn't with him, I'd have to get the kids out and go in and get him, since I pick him up in the middle of the school day. Imagine my surprise to see his teacher bringing him out. When he got to the van, it went something like this:
Me: So how'd he do?
L: We're good.
Me: We're good? Oh, he had a good day?
L: No, we're GOOD.
Me: Um... you mean we don't need to hire someone else good?
L: I'd like to try it.
That last comment and the look on L's face I will remember for eternity.
She went on to describe how well he'd done since lunch the day before, when his aid had resigned. Not one meltdown. Little fits, but no meltdowns. Being the mommy I am, I had to make sure he was safe. Satisfied with her answer, I put my official mommy-seal on the deal and we agreed.
RYAN IS IN KINDERGARTEN WITHOUT AN AID!
Full inclusion. All day. Only someone to help with music and p.e.
After searching the van for and reattaching my chin, we headed to therapy. Soon as I was out of the school zone I called Eric. We both teared up. I think we both said "FOR REAL?!?!" about ten times. The only other thing that we could manage to utter was Praise God.
It has now been a week and a half. If Ryan's folder was still here, I'd show you the happy faces and "Great Day" markings on his behavior chart. I am still in utter disbelief.
I'm in disbelief that he's doing this! We are so proud of him! We are so proud of his teacher! We are so proud to be in a school district that makes the paperwork fit the kid instead of the kid fit the paperwork! I mean, he still needs some support. But when you're in a place where all the teachers actually really do care about the kids... all of the kids, not just the easy ones... kids like Ryan get a shot. They get a real shot. And when they fall, others pick them up, dust them off, and give them another shot. I cannot tell you how grateful I am for God's providence in all this. For the teachers, administration, the special programs department, his teacher form the last three years who still checks in on him, the aid who knew for whatever reason it was time to go... all of this, we are so grateful.
I don't know why God chose to give us all He's given us. I could begin listing it all, but don't think blogger would allow me the storage capacity. Just looking around in our family, just seeing our three kids smiling at us, is more than enough. We're healthy, my husband and I love each other, we still have my mother, his parents, and his Nana, we have our sisters and their husbands and families, and we have extended family. We have a fabulous church, wonderful friends, and a roof over our heads.
As King David said in 2 Samuel 7:18, "Who am I, O Lord God, and what is my house, that you have brought me thus far?"
Who am I, Lord? Who are we, that you have brought us this far?!
Thanks and much praise be to God!
Monday, August 29, 2011
Finding Ryan
"It's ok. Daddy's got you. I promise I'll never let anything happen to you, Nemo." -Marlin, "Finding Nemo"
On the way to therapy at Baylor for the first time this semester, I finally talked Ryan out of the Cadets CD, track #6 and put in the soundtrack of "For The Boys". Once of my favorites since high school, it has a song I sang to both my sister and my Ryan when they were babies. Soon as "Dreamland" folated through the speakers, I caught a glimpse of Ryan... big, six year old, kindergarten Ryan, stimming on the passing bridge... and had to fight back tears. There are times when the before time seems like a lifetime ago. You know, the before time. BA. Before Autism. There are times that looking back on that time stings. That innocence, that time before the different showed. The time I spent rocking my dear, sweet boy, singing every song that's managed to lodge itself in my memory. The times I danced around the kitchen to the Sesame Street CD (the one I had before we had kids). Even the time before glaucoma. The days I talked to him, and prayed for him, and dreamed about him and what he would become... those days aren't completely gone, but autism leaves one with little time to dream. Reality tends to take over when you need good, solid routines. Really, it's made us better parents, better people. But it does get rough.
To tell the truth, I've turtled a lot in the last six or so months. Backed out of a lot in a desperate attempt to go back to the basics of our faith and who we are to answer the questions of what in the world we do next. To wipe the slate clean and only add the things back that are best... God's best, not ours. Ryan is definitely not a baby anymore. Anyone who might have passed off his fits as "just being a toddler" can now see that we're not hyper-helicopter parents... there's really something different about him. There's just something about turning five. It's been a gut-wrenching ride for a long time, but it hasn't been as hard as the last six months or so since the very beginning.
In a few isolated instances he even looks like a typical kid, especially when he's perched on the ottoman clutching a video game controller. His profile struck me the other day, watching him play "Cars" with his daddy. He looked like a six year old boy playing video games for just a moment. One delicious, precious moment of complete normalcy. Then his sister got too close. After screaming toward her, he got up and started running the car into a wall, stimming like crazy. He is amazing. He is incredibly smart and sweet. But he is also very different, requiring different approaches to just about everything as the other two kids. And more protection. He doesn't understand or just can't stay on task long enough to hold onto the stroller when we're walking somewhere, and that goes double if cars are coming. Today he stood in the visitor lot when we got to therapy, stimming on a car that was coming at him. He really won't get out of the way. They're all just things to be studied, enjoyed, and played with.
So very much of our time is spent putting into practice the techniques we've learned in therapy, at school, and by good old-fashioned trial and error. Riding out fits, holding the line. Keeping calm. Apologizing, confessing, regrouping, and hugging when we've not kept calm. So much time is spent making sure that we're doing the right thing, going to the right therapies, following the correct advice, communicating the things that are needed to make sure he's successful as he can be that we stop and realize we've missed life. We've been busied out of enjoying our little guy as a six year old. Some of this is necessary, but it used to make us feel a bit robbed at times, and still does though not as much. Take the first day of school. Most people walk their kids straight to the room. Not us. No, routine must be clearly established, boundaries clearly defined. If I'd walked him to his room the first day, he'd have been completely thrown off the second day. He remembers, and he will apply that to the next day as well. Instead of asking "why aren't you walking me in" Ryan's reaction would include some if not all of these: screaming, shaking, crying, hitting himself, hitting the walls, furniture, whatever's close, and just completely dissolving into a mess. The rest of the day or week could be thrown off. It might not... there's always the possibility that it might be fine. And we would live through it, as we do all the time. But it's not pleasant.
Simple things like dropping him off at Sunday school or any other age-appropriate function became a terror when Ryan hit about five. No longer a baby, but not able to hang with the big boys by himself, Ryan still needs someone to keep him on task, and protect him from wandering. By wandering, I mean getting bored, opening the door (which he does easily) and walking along, stimming on this and that. Wandering for so many autistic children means death. No, I'm not being overdramatic. The number one cause of death for these children is drowning, usually as a result of wandering. Then there's the fact that if I tried to put him in a class younger than his peer group, and I have (not proud of that), there are so many problems. He's bigger, he's becoming stronger, louder, and if he chose to kinda wrestle with a kid his brother's age like he does his brother, well... that's just dangerous for the other kid. Then there are the things that trigger overstimming... elevators, spinning things, and doors, while necessary and unavoidable, are just a few that can tank an entire day. Whoever he's with needs to be educated and ready to be super calm no matter what. And in a classroom setting, for now they're going to need help. These are just a few of the highlights of the reasons things like school and church are stressful. Friendly get-togethers, football games, etc. where kids his age run around and play together, mostly unsupervised? Impossible. Why? By the time it's time to attend or even schedule these things if they fit in the schedule, I simply have no patience left. I know, thanks to the internet, that I'm not alone there. It's sad but true. So much of my emotional, mental and physical energy goes into staying calm and level for the kids and especially Ryan that even a sideways glance or a misplaced comment can topple the teetering blocks of my emotional tower.
So what do we do? We all need relationships to a degree. The degrees vary from person to person, but the need is there. Two places we, Lord willing, do not compromise are school and church. These are things we believe are non-negotioable. But all of a sudden, it looks like we're going to have to compromise. It looks too hard to continue. Maybe even impossible.
"I promised I'd never let anything happen to him." -Marlin
"Well, you can't just never let ANYTHING happen to him! That'd be awful dull for little harpo (Nemo)." -Dorie
We simply cannot protect him forever. We have to find ways to orchestrate things that gives him the opportunity to develop as a person. Keeping him always with me is, for the present time, not the best option. We seriously considered homeschool, and would do it in a minute if his needs weren't being met at school. There are so many people who do this and it works for them and for their children. So many people (and I used to be one of them, sorry to say) have strong opinions about this, and are more than happy to slap you with them. Just try sharing with people that you're considering one or the other.
Somewhat akin to Marlin, I need to protect my boy. But I don't believe that doing everything for him and completely sheltering him is the answer, but neither is ignoring his issues and insisting that he be treated exactly like everyone else. Both of these extremes would be severely detrimental. Whether or not I like it, Ryan has issues that we must address. He has needs that we must meet. So that protection has to run alongside training to deal with how to live in the world safely and productively, thus coming a lot closer to making sure he's always going to be as safe and happy as he can be.
For us, this means there are things we just don't do, if for no other reason than the toll on my stress meter. I've learned to listen to my stress meter. When my stress is through the roof, it's harder to be patient. When I have a hard time being patient, everyone has a hard time being patient. It's humbling (and when it all blows up in my face, humiliating) that often I can change the climate of the whole thing if I just change me. Less selfish. More concerned with what Eric and the kids like and want, less with me. And what's fair? "Fair" very seldom exists, and can almost permanently find its place on sin shelf next door to selfish and just down the road from pride. It's also a hop, skip and a jump from anger and bitterness. So we are who we are, we do what we do. We decide what our family is capable of, and to what degree.
The biggest hurdle of this for us has been letting go of our preconcieved notions, which is a slightly less painful way to say we have to kinda ditch some dreams. Take football games. In small town Texas, Friday night is a big deal. I'd say more people show up to the game than to church on Sunday, but I'm afraid I'd be right. Football is almost its own religion here. Football, marching band, cheerleaders, drill team... it's all engrained in our culture. And I used to be a band director. I've told you before that I used to be a band director and how important music is to our family. We wanted to have our kids at every game, in their mini band shirts, playing with the other band directors' kids behind the band stands in the end zone. For a while I tried to keep up with this, and with just Richie and Ryan it wasn't so rough. It was interesting, but doable. Did you notice I said our band sits in the end zone? Yeah. No boundaries. The band often catches field goals. Makes for a fun time for the big kids, but for me? No boundaries is dangerous. Can you imagine a six year old with no fear wandering into the middle of a football game? Just think about the encounter with a moving motor vehicle today, replace it with a seventeen year old boy with a ton of groceries in him. Let that wash over you for a sec. You'd stay home too, no?
So there are things we should steer clear of without assistance. No, it's not what I'd prefer, but it's what we need to do. Trust me. I've come home from games I should not have attempted with screaming, sweaty Ryan and confused, tired Richie. We don't go to band rehearsals either. The thought of Ryan wandering into the band is almost as bad as wandering into the game. Some of the same issue is why I was terrified of kindergarten. I was scared of him getting lost. But going to another self contained class wasn't right for him for sure. So we had to let go so he could have room to grow. We thoughtfully prepared him and prayed for him, and finally it was time to let him go. Maybe it's not so big in the grand scheme of things. But to us, it's a step toward Ryan being able to enjoy the freedoms we all enjoy. It's a big step toward hope. Major encouragement to keep traveling 45 minutes one way to ABA. Major accomplishment.
I don't want his life to be dull. To tell the truth, my greatest fear is that his life will be dull. I don't want him to be stuck with less than life more abundantly. I love having him with me. No, it's not always fun to try to help him learn to love things that are important to us, but love is not always a warm feeling, it's something you do. At times I do these things kicking and screaming, I'll grant you. I've been in a church when one of the ushers came up to a sweet family of parents plus four small ones, telling them that, uh, in case you didn't know we have a nursery and I'd be happy to help you find it. Genuine helpful intentions. But for someone wanting their children to experience worship, it was a big red flag. Far as I know they never returned. We're one of those families who are blessed to have our children beside us, however noisy, wiggly, squirmy, and fidgety they may be. the wiggling and squirming is part of the process. There's even a little disclaimer to those visiting our church, that they may be aware we welcome children to worship. You'll hear noise, just tune it out. These kids are important, and they have a place here. Ah. Lovely.
So far, we have managed to let go of the old and bring in the new. Sometimes the things that we think will surely drive us mad and don't make sense at first winds up making sense... and at times, not only making sense but being the biggest blessing in the world. The things we held dear become the impossible, and we're forced to reinvent, rethink, and restructure. And if we are not mixing strong and courageous with patience and thought (as Nanny would have said, "go off half-cocked"), we can make horrible messes. We are so proud of this week of kindergarten for our boy, and so grateful for the opportunities we have been given to further Ryan's education in a way that meets his needs. We're learning more every day about not worrying about what other people think about what we do and don't do, and more and more hold fast to the promises of God and what we know we should do. We're learning to remember that we are human and fallen, therefore we will be tired and weary. And tired and weary is okay. But we absolutely must remember that others are the same... tired, world-worn, and weary. We have to keep trying, keep overcoming the fear and helping Ryan take very calculated steps to having life more abundant.
We have had so many prayers for our family answered in so many ways just this summer... heck, just last week... that I have to be thankful. We have an amazing life! I watch my beautiful Richie playing in his sweet, brilliant way, Maelynn swinging her little hips from side to side, skirt flipping around, as she tries her best to dance and sing to Elmo's Song. I see my handsome Ryan's mouth form the word "Mommy" and stim as he sees me pull up... and I see the sparkle in his eye when he sees it's me... and I know what I have to do. There is so much, and it's all so complex in so many ways I can't begin to understand or explain. But it all comes down to one piece of advice from Ryan's favorite cartoon fish, Dory...
Just keep swimming.
Just keep swimming.
We have to keep swimming, trusting that when we need to rest, we can bring our weary, scream-roasted nerves to Him and He'll help us start over the next day. I can't promise that it'll be easy, but I can promise that we will get up tomorrow and keep swimming.
On the way to therapy at Baylor for the first time this semester, I finally talked Ryan out of the Cadets CD, track #6 and put in the soundtrack of "For The Boys". Once of my favorites since high school, it has a song I sang to both my sister and my Ryan when they were babies. Soon as "Dreamland" folated through the speakers, I caught a glimpse of Ryan... big, six year old, kindergarten Ryan, stimming on the passing bridge... and had to fight back tears. There are times when the before time seems like a lifetime ago. You know, the before time. BA. Before Autism. There are times that looking back on that time stings. That innocence, that time before the different showed. The time I spent rocking my dear, sweet boy, singing every song that's managed to lodge itself in my memory. The times I danced around the kitchen to the Sesame Street CD (the one I had before we had kids). Even the time before glaucoma. The days I talked to him, and prayed for him, and dreamed about him and what he would become... those days aren't completely gone, but autism leaves one with little time to dream. Reality tends to take over when you need good, solid routines. Really, it's made us better parents, better people. But it does get rough.
To tell the truth, I've turtled a lot in the last six or so months. Backed out of a lot in a desperate attempt to go back to the basics of our faith and who we are to answer the questions of what in the world we do next. To wipe the slate clean and only add the things back that are best... God's best, not ours. Ryan is definitely not a baby anymore. Anyone who might have passed off his fits as "just being a toddler" can now see that we're not hyper-helicopter parents... there's really something different about him. There's just something about turning five. It's been a gut-wrenching ride for a long time, but it hasn't been as hard as the last six months or so since the very beginning.
In a few isolated instances he even looks like a typical kid, especially when he's perched on the ottoman clutching a video game controller. His profile struck me the other day, watching him play "Cars" with his daddy. He looked like a six year old boy playing video games for just a moment. One delicious, precious moment of complete normalcy. Then his sister got too close. After screaming toward her, he got up and started running the car into a wall, stimming like crazy. He is amazing. He is incredibly smart and sweet. But he is also very different, requiring different approaches to just about everything as the other two kids. And more protection. He doesn't understand or just can't stay on task long enough to hold onto the stroller when we're walking somewhere, and that goes double if cars are coming. Today he stood in the visitor lot when we got to therapy, stimming on a car that was coming at him. He really won't get out of the way. They're all just things to be studied, enjoyed, and played with.
So very much of our time is spent putting into practice the techniques we've learned in therapy, at school, and by good old-fashioned trial and error. Riding out fits, holding the line. Keeping calm. Apologizing, confessing, regrouping, and hugging when we've not kept calm. So much time is spent making sure that we're doing the right thing, going to the right therapies, following the correct advice, communicating the things that are needed to make sure he's successful as he can be that we stop and realize we've missed life. We've been busied out of enjoying our little guy as a six year old. Some of this is necessary, but it used to make us feel a bit robbed at times, and still does though not as much. Take the first day of school. Most people walk their kids straight to the room. Not us. No, routine must be clearly established, boundaries clearly defined. If I'd walked him to his room the first day, he'd have been completely thrown off the second day. He remembers, and he will apply that to the next day as well. Instead of asking "why aren't you walking me in" Ryan's reaction would include some if not all of these: screaming, shaking, crying, hitting himself, hitting the walls, furniture, whatever's close, and just completely dissolving into a mess. The rest of the day or week could be thrown off. It might not... there's always the possibility that it might be fine. And we would live through it, as we do all the time. But it's not pleasant.
Simple things like dropping him off at Sunday school or any other age-appropriate function became a terror when Ryan hit about five. No longer a baby, but not able to hang with the big boys by himself, Ryan still needs someone to keep him on task, and protect him from wandering. By wandering, I mean getting bored, opening the door (which he does easily) and walking along, stimming on this and that. Wandering for so many autistic children means death. No, I'm not being overdramatic. The number one cause of death for these children is drowning, usually as a result of wandering. Then there's the fact that if I tried to put him in a class younger than his peer group, and I have (not proud of that), there are so many problems. He's bigger, he's becoming stronger, louder, and if he chose to kinda wrestle with a kid his brother's age like he does his brother, well... that's just dangerous for the other kid. Then there are the things that trigger overstimming... elevators, spinning things, and doors, while necessary and unavoidable, are just a few that can tank an entire day. Whoever he's with needs to be educated and ready to be super calm no matter what. And in a classroom setting, for now they're going to need help. These are just a few of the highlights of the reasons things like school and church are stressful. Friendly get-togethers, football games, etc. where kids his age run around and play together, mostly unsupervised? Impossible. Why? By the time it's time to attend or even schedule these things if they fit in the schedule, I simply have no patience left. I know, thanks to the internet, that I'm not alone there. It's sad but true. So much of my emotional, mental and physical energy goes into staying calm and level for the kids and especially Ryan that even a sideways glance or a misplaced comment can topple the teetering blocks of my emotional tower.
So what do we do? We all need relationships to a degree. The degrees vary from person to person, but the need is there. Two places we, Lord willing, do not compromise are school and church. These are things we believe are non-negotioable. But all of a sudden, it looks like we're going to have to compromise. It looks too hard to continue. Maybe even impossible.
"I promised I'd never let anything happen to him." -Marlin
"Well, you can't just never let ANYTHING happen to him! That'd be awful dull for little harpo (Nemo)." -Dorie
We simply cannot protect him forever. We have to find ways to orchestrate things that gives him the opportunity to develop as a person. Keeping him always with me is, for the present time, not the best option. We seriously considered homeschool, and would do it in a minute if his needs weren't being met at school. There are so many people who do this and it works for them and for their children. So many people (and I used to be one of them, sorry to say) have strong opinions about this, and are more than happy to slap you with them. Just try sharing with people that you're considering one or the other.
Somewhat akin to Marlin, I need to protect my boy. But I don't believe that doing everything for him and completely sheltering him is the answer, but neither is ignoring his issues and insisting that he be treated exactly like everyone else. Both of these extremes would be severely detrimental. Whether or not I like it, Ryan has issues that we must address. He has needs that we must meet. So that protection has to run alongside training to deal with how to live in the world safely and productively, thus coming a lot closer to making sure he's always going to be as safe and happy as he can be.
For us, this means there are things we just don't do, if for no other reason than the toll on my stress meter. I've learned to listen to my stress meter. When my stress is through the roof, it's harder to be patient. When I have a hard time being patient, everyone has a hard time being patient. It's humbling (and when it all blows up in my face, humiliating) that often I can change the climate of the whole thing if I just change me. Less selfish. More concerned with what Eric and the kids like and want, less with me. And what's fair? "Fair" very seldom exists, and can almost permanently find its place on sin shelf next door to selfish and just down the road from pride. It's also a hop, skip and a jump from anger and bitterness. So we are who we are, we do what we do. We decide what our family is capable of, and to what degree.
The biggest hurdle of this for us has been letting go of our preconcieved notions, which is a slightly less painful way to say we have to kinda ditch some dreams. Take football games. In small town Texas, Friday night is a big deal. I'd say more people show up to the game than to church on Sunday, but I'm afraid I'd be right. Football is almost its own religion here. Football, marching band, cheerleaders, drill team... it's all engrained in our culture. And I used to be a band director. I've told you before that I used to be a band director and how important music is to our family. We wanted to have our kids at every game, in their mini band shirts, playing with the other band directors' kids behind the band stands in the end zone. For a while I tried to keep up with this, and with just Richie and Ryan it wasn't so rough. It was interesting, but doable. Did you notice I said our band sits in the end zone? Yeah. No boundaries. The band often catches field goals. Makes for a fun time for the big kids, but for me? No boundaries is dangerous. Can you imagine a six year old with no fear wandering into the middle of a football game? Just think about the encounter with a moving motor vehicle today, replace it with a seventeen year old boy with a ton of groceries in him. Let that wash over you for a sec. You'd stay home too, no?
So there are things we should steer clear of without assistance. No, it's not what I'd prefer, but it's what we need to do. Trust me. I've come home from games I should not have attempted with screaming, sweaty Ryan and confused, tired Richie. We don't go to band rehearsals either. The thought of Ryan wandering into the band is almost as bad as wandering into the game. Some of the same issue is why I was terrified of kindergarten. I was scared of him getting lost. But going to another self contained class wasn't right for him for sure. So we had to let go so he could have room to grow. We thoughtfully prepared him and prayed for him, and finally it was time to let him go. Maybe it's not so big in the grand scheme of things. But to us, it's a step toward Ryan being able to enjoy the freedoms we all enjoy. It's a big step toward hope. Major encouragement to keep traveling 45 minutes one way to ABA. Major accomplishment.
I don't want his life to be dull. To tell the truth, my greatest fear is that his life will be dull. I don't want him to be stuck with less than life more abundantly. I love having him with me. No, it's not always fun to try to help him learn to love things that are important to us, but love is not always a warm feeling, it's something you do. At times I do these things kicking and screaming, I'll grant you. I've been in a church when one of the ushers came up to a sweet family of parents plus four small ones, telling them that, uh, in case you didn't know we have a nursery and I'd be happy to help you find it. Genuine helpful intentions. But for someone wanting their children to experience worship, it was a big red flag. Far as I know they never returned. We're one of those families who are blessed to have our children beside us, however noisy, wiggly, squirmy, and fidgety they may be. the wiggling and squirming is part of the process. There's even a little disclaimer to those visiting our church, that they may be aware we welcome children to worship. You'll hear noise, just tune it out. These kids are important, and they have a place here. Ah. Lovely.
So far, we have managed to let go of the old and bring in the new. Sometimes the things that we think will surely drive us mad and don't make sense at first winds up making sense... and at times, not only making sense but being the biggest blessing in the world. The things we held dear become the impossible, and we're forced to reinvent, rethink, and restructure. And if we are not mixing strong and courageous with patience and thought (as Nanny would have said, "go off half-cocked"), we can make horrible messes. We are so proud of this week of kindergarten for our boy, and so grateful for the opportunities we have been given to further Ryan's education in a way that meets his needs. We're learning more every day about not worrying about what other people think about what we do and don't do, and more and more hold fast to the promises of God and what we know we should do. We're learning to remember that we are human and fallen, therefore we will be tired and weary. And tired and weary is okay. But we absolutely must remember that others are the same... tired, world-worn, and weary. We have to keep trying, keep overcoming the fear and helping Ryan take very calculated steps to having life more abundant.
We have had so many prayers for our family answered in so many ways just this summer... heck, just last week... that I have to be thankful. We have an amazing life! I watch my beautiful Richie playing in his sweet, brilliant way, Maelynn swinging her little hips from side to side, skirt flipping around, as she tries her best to dance and sing to Elmo's Song. I see my handsome Ryan's mouth form the word "Mommy" and stim as he sees me pull up... and I see the sparkle in his eye when he sees it's me... and I know what I have to do. There is so much, and it's all so complex in so many ways I can't begin to understand or explain. But it all comes down to one piece of advice from Ryan's favorite cartoon fish, Dory...
Just keep swimming.
Just keep swimming.
We have to keep swimming, trusting that when we need to rest, we can bring our weary, scream-roasted nerves to Him and He'll help us start over the next day. I can't promise that it'll be easy, but I can promise that we will get up tomorrow and keep swimming.
Tuesday, August 2, 2011
The Tale of the Wrong Brush
This summer, I got stupid... er, I mean brave (such a fine line) and decided that I wanted to bite the bullet and start really making our new house ours. I've never had the privilege of painting a dwelling any color I want. After helping Mom paint at her house, and having visited a few times since then, it hit me on the way back... it's time. So after gathering supplies, gumption, and a game plan to keep the kids happy I hit it. Mae's room was one of the first. It's "fresh pink lemonade" and "quaint purple". The boys' room isn't yet begun, but their only suggestion when I asked what color was "Thomas" and that was from Richie. "bolt of blue lightning" was the closest. The bathroom is the shades closest to the ones Mom had that I could find... "morning rain" and "King Neptune blue". The day I was painting the bathroom, I'd just opened the "morning rain" and was refilling the paint tray when I had to get up and walk away for a second. After talking to Eric for a minute and taking care of whatever it was, I looked around.
Where's Maelynn?!
Eric went to the bathroom and flipped. She had taken the only brush she could find, dunked it in the paint can *all the way to the bottom* and was about to start slingin' when Daddy arrived! You could tell she wanted to help. "Okay, gonna help Mommy paint. There's the paint, now where's a brush... brush... hmm... there's a brush!" *dunk*
I laughed till I cried, took a picture with my phone and sent it to my Mom, knowing she'd love it. And she did. It wasn't a major cleanup effort. She didn't even get any on herself! That's my girl!
That's how it goes, though. When Ryan starts screaming, hitting himself, won't eat, starts crying, or saying something we can't understand, we try something. We look around for the nearest thing that looks like it will help, be it favorite toy, movie, or something much bigger like therapy, rethinking the plan, redoing the whole plan, throwing the plan out and staring over, blah blah blah... and we do this all day long. That looks like it'll work... only to see either no results, some results, or have it backfire and make it all worse.
Honestly, with trying to guide Ryan lately, I feel like I have no idea. I'm grasping at straws, groping in the dark with thick gloves on, desperate for something to work. But what do you do? We worked so hard on asking for things. We are so proud that he's better at that! Once you learn what a few things mean to him, like "pack your swimsuit" means "can we go swimming?" and just he fact that he does have some pronoun trouble, you can figure out what he wants. Problem, you ask?
What happens when the answer is no? What happens when you can't take him swimming? What happens when he wants to "go to the hotel" or "to the carousel" (his term for Morgan's Wonderland) or to Waco or to see Granny or Grammy and Grampy, and he wants it NOW? WHAT DO YOU DO? My child, my dear, precious, sweet baby that I held, nursed, rocked, cared for, and nurtured since the day he was born screams till a vein pops out on his neck and beats his chest and head! He makes sounds I can't describe... gutteral, screamy-squealy-growley noises that sound like a posessed pig. I cannot describe the sheer torment on his face. Sometimes all because I said no... often for no detectable reason. No, we do not just give him what he wants... really. I just can't describe it.
Just today I was on a chair (don't judge... I know... I have a ladder, and it's in the carport closet) painting in the kitchen. The littles were asleep, and Ryan was watching "elevator Toy Story" (Toy Story 2). Out of the silence he makes himself known wordlessly yet unmistakably, with one of his angry sounds. Nothing that I can tell is wrong. He sounded like he should be, but he was not bleeding. I want to know how to help. He had his glasses on, he had his shoes on and they were fine... I went down the list and all was well. After emphatically asking... pleading... with him to tell me what's wrong, stop screaming, something like that, two minutes later he's at it again. This time he woke his sister as he entered a meltdown that ended with me face in hands, falling completely apart into tears.
Then he walked over, stretched out his arms, hugged me... not backed up to me... HUGGED me, laying his head on my shoulder, arms around me, saying, "It's okay. It's alright." Over and over, while I cried and apologized for being so bad at this, he told me "It's okay. It's alright." I think he even said "Mommy" in there too.
A few days ago I read on another mommy blog a song I'd been listening to over and over, and hadn't thought of applying it to our situation. When I read it, I thought about it as she used it... they are waiting on her little girl to learn to speak. I thought of it that way, too, as applied to us. But tonight, as I consider the paintbrush story and Ryan's comfort, I realize I was wrong. I was thinking it's Eric and I who are waiting on Ryan to "work it out"... when in reality, he's being patient with us.
(in case you want to hear the song...)
Where's Maelynn?!
Eric went to the bathroom and flipped. She had taken the only brush she could find, dunked it in the paint can *all the way to the bottom* and was about to start slingin' when Daddy arrived! You could tell she wanted to help. "Okay, gonna help Mommy paint. There's the paint, now where's a brush... brush... hmm... there's a brush!" *dunk*
I laughed till I cried, took a picture with my phone and sent it to my Mom, knowing she'd love it. And she did. It wasn't a major cleanup effort. She didn't even get any on herself! That's my girl!
That's how it goes, though. When Ryan starts screaming, hitting himself, won't eat, starts crying, or saying something we can't understand, we try something. We look around for the nearest thing that looks like it will help, be it favorite toy, movie, or something much bigger like therapy, rethinking the plan, redoing the whole plan, throwing the plan out and staring over, blah blah blah... and we do this all day long. That looks like it'll work... only to see either no results, some results, or have it backfire and make it all worse.
Honestly, with trying to guide Ryan lately, I feel like I have no idea. I'm grasping at straws, groping in the dark with thick gloves on, desperate for something to work. But what do you do? We worked so hard on asking for things. We are so proud that he's better at that! Once you learn what a few things mean to him, like "pack your swimsuit" means "can we go swimming?" and just he fact that he does have some pronoun trouble, you can figure out what he wants. Problem, you ask?
What happens when the answer is no? What happens when you can't take him swimming? What happens when he wants to "go to the hotel" or "to the carousel" (his term for Morgan's Wonderland) or to Waco or to see Granny or Grammy and Grampy, and he wants it NOW? WHAT DO YOU DO? My child, my dear, precious, sweet baby that I held, nursed, rocked, cared for, and nurtured since the day he was born screams till a vein pops out on his neck and beats his chest and head! He makes sounds I can't describe... gutteral, screamy-squealy-growley noises that sound like a posessed pig. I cannot describe the sheer torment on his face. Sometimes all because I said no... often for no detectable reason. No, we do not just give him what he wants... really. I just can't describe it.
Just today I was on a chair (don't judge... I know... I have a ladder, and it's in the carport closet) painting in the kitchen. The littles were asleep, and Ryan was watching "elevator Toy Story" (Toy Story 2). Out of the silence he makes himself known wordlessly yet unmistakably, with one of his angry sounds. Nothing that I can tell is wrong. He sounded like he should be, but he was not bleeding. I want to know how to help. He had his glasses on, he had his shoes on and they were fine... I went down the list and all was well. After emphatically asking... pleading... with him to tell me what's wrong, stop screaming, something like that, two minutes later he's at it again. This time he woke his sister as he entered a meltdown that ended with me face in hands, falling completely apart into tears.
Then he walked over, stretched out his arms, hugged me... not backed up to me... HUGGED me, laying his head on my shoulder, arms around me, saying, "It's okay. It's alright." Over and over, while I cried and apologized for being so bad at this, he told me "It's okay. It's alright." I think he even said "Mommy" in there too.
A few days ago I read on another mommy blog a song I'd been listening to over and over, and hadn't thought of applying it to our situation. When I read it, I thought about it as she used it... they are waiting on her little girl to learn to speak. I thought of it that way, too, as applied to us. But tonight, as I consider the paintbrush story and Ryan's comfort, I realize I was wrong. I was thinking it's Eric and I who are waiting on Ryan to "work it out"... when in reality, he's being patient with us.
Oh love wash over a multitude of thingsThank you, Ryan, for being Jesus with skin on to mommy today. Thank you for always loving me no matter how clueless and frustrated I am. Just like I promised tonight, I will always keep trying to be a better mommy for you. Thank you, Lord, for new mercies, Your grace, and its sufficiency for my utter inadequacies... and for making me whole. Thank you, thank you, again and again... You are amazing!
Love wash over a multitude of things
Love wash over a multitude of things
Make us whole
There is a love that never fails
There is a healing that always prevails
There is a hope that whispers a vow
A promise to stay while we're working it out
So come with your love and wash over us
(When it was Over by Sara Groves)
(in case you want to hear the song...)
Thursday, July 21, 2011
Question...
Ever have one of those days? One of those days where you feel like your limbs are moving through peanut butter? One of those times when the things you do manage to do seem to be amazingly messed up? The worst part is I have little excuse. Okay, I have a little excuse, but it's not anything huge.
On these days the funny thing is, I don't realize how different our lives really are. I get tired and start to beat up on myself a bit for the dishes in the sink, the cans of paint by the door, the border that needs to come down in the kitchen. Then I hear a random scream and realize, "oh yeah..." and it all comes together. Thankfully, I have a husband who is willing to learn this aspect of loving his wife. I won't lie. He does make mistakes. We both do. We are, at times, insensitive to each other, selfish, and just plain grumpy. But that's where grace and mercy come in, and oh do we ever need that.
Yesterday was a fun day, and looking back, it was rather busy. A friend needed an interview with a special needs mom, so I got to do that and really enjoyed it. For one, I got to spend time in my home with someone who gets it. That's always valuable. Equally valuable is long phone conversations with good friends just to catch up... friends who trust that you're doing the best you can with what you have... yeah, that's amazing too.
Anyway, the questions were interesting. The ones that stick out the most are something about how your child's special need has challenged your relationships (family, friends, marriage, etc.). Wow. Talk about shoving Niagara Falls through a drinking straw. As I struggled to answer without giving her writer's cramp (yes, she used this low-tech papery blog thing called a "notebook" and this magical stick called a "pen"), I knew that there was too much. Did my best, though. But not all of it would fit. It's too huge.
What has Autism done to challenge us?
Autism has made us more aware and thankful than we could ever have imagined for every milestone in all our kids. Once you've had a child who didn't reach them, they are celebrated with the fervor of, say, winning the "Piston Cup" or making it to "P Sherman 42 Wallaby Way Sydney". For those non-Pixar watchers, with winning the Stanley Cup or the Super Bowl. We get excited.
Autism has made us hurt more than we wanted to. The pain of realizing your child has challenges that you cannot immediately change... it's not a scrape on the knee, a cold, or a stomach bug that will pass. It's in your face and demanding all the time. It does not take time off because you've been doing so great. It alters your thinking about everything. It forces you to plan EVERYTHING down to the letter. A family trip to the mall? To church? To the park? Every last blasted step must be thought out. We are picture-scheduled and social-storied, this-then-that-ed to the nth degree. It stings you in places you didn't know anything could reach, and even in places you didn't know you had. There are days and times when it brings you to your knees in ways you never thought possible.
Autism magnifies the meanness and kindness of people. We have seen people go out of their way to connect with Ryan, and we see all the time people go out of their way to avoid him and us. The most glaring example is the difference between going out with just the two littles and with Ryan. Go out with just Mae and Richie, and you get "oh, are they twins?" and "oh, what beautiful children!" and "oh, you have your hands full". I usually add "you should see me when I have their six year old brother, too." Go out with Ryan? Few people look us in the eye. Fewer still speak. I've even heard comments like, when I told someone I was pregnant with Maelynn, "oh, I thought surely you'd had your tubes tied!" From afraid to speak to unwanted advice to angry comments at his behavior, there is a marked difference in how we're treated. Funny thing is, I feel guilty when it feels normal. Almost like I'm lying, you know?
Autism searches your marriage for weak spots and exploits them. If you're not good, effective communicators, if you haven't learned to forgive (and that forgiveness means you give up your right to punish the person who hurt you), if you're not playing as a team... all those things are magnified. They were problems before, but they'll really be problems now. Having children period does this, but having special needs children will go a few steps further. Our time together is sacred. Once the kids go to bed, once we have our chores done, we have big kid time. Ice cream and a non-animated show, video games, air hockey on the iPad, or a movie, something that is light and fun at least once a week if we can swing it. Kids are in bed, we know they're safe, and we chill and take time to be Eric and Crystal, those people who only dated a week and a half before they got engaged, and not Daddy and Mommy. But I'd lie if I said we never argue, never get mad and cranky and say things we wish we hadn't. Pressure is too much at times, and we're fallen humans.
Autism drives you to or from your faith. If you are angry at God for the special need your child has, tell Him. He can take it... He's GOD for cryin' out loud. He hears and knows your thoughts anyway, so you might as well spill it. Work through it. For me, there's no way to deal without knowing someone else is in charge. I still do my best, I still advocate for my son, but at the end of a day of screaming meltdowns and utter frustration, it's nice to know you can let go of the rope, because you know He's there to catch you. It's also nice to know there's a purpose and plan for this (Jeremiah 29:11). Obviously (I hope), autism has driven us to seek the Lord more fervently than ever.
Autism makes you let go of things that don't... and really never did... matter. My house is not uber-tidy. The floor of my van is covered in an odd assortment of old french fries, cracker crumbs, and cheerios, there are picture schedule icons everywhere, there are toys all over the place, but I do my best. The sheets are clean, the diapers are clean, the kids are fed. On the days when I can't even say that, oh well. See above. Today I needed to be painting, making a packing list, mopping, or doing any number of things, but I like to think that the time I spent in the floor with the "bears" (bear counters), books, and watching T-O-Y three (Ryan's name for Toy Story 3) are going to be more remembered by the kids. Yes, I do clean house, but neat freak? Oh no. And it's certainly not a showplace... but it is happy and comfortable.
Autism forces you to let go of some dreams you didn't even realize were dreams to make room for your child's safety and well-being. And yours. Situations you used to enjoy are just too frustrating. Small talk is almost unbearable (can't lie... I was never good at that anyway). Things you once took for granted are now in the "yeah right" dream category.
Autism makes you grateful for so many things you never thought about before. It makes you angry about things you never knew existed. It brings words like segregation, integration, inclusion, separation, isolation, and frustration to new levels of understanding. It makes you more sensitive and tougher at the same time. It brings to light so many ways people need to be loved, and the fact that almost none of them are exactly the same. It makes the everyday so flustering, but at the same time, on the rare occasions something goes completely smoothly, it's so much sweeter.
It has taught us that standing in the midst of a time when you have no idea what is going to happen next, where the patience for the rest of the fit will come from, or what in the world you're going to do... when you stand there, tears pouring, heart-sick, worn, weary, meltdown-weathered and exhausted and say with the shred of energy you have left that there is a reason... He is in charge, He has not left us, His mercies are new every morning, and we will rise to greet tomorrow with joy, for it is a day He has made... when you reach through the pain and extend a hand and heart to others in the same situation... when we just get up and do it all again and again... that is worship. We want to live it, not just survive it.
We are there right now. A major time of transition. No idea how it will go. We have a pretty good idea of how to prepare, and that consists of making sure the picture schedule has been in play, he's used to getting up at the hour he needs to go to school, we've worked on sight words, counting, sorting, waiting, sharing, asking for what we want, going to the bathroom without following a timer, everything we can think of, and now we have to stay the course, and trust. There are moments when I think he's gonna blow the top off of all the changes, and there are moments I think we've lost our minds. One minute he's counting, reading out loud, and hugging his brother and the next minute, he's screaming, hitting himself, and shoving his sister off the couch. Just when we think something's gonna go one way it goes flyin' the other.
So how has Autism challenged our family? How has it changed us?
I hate to admit it, but when all's said and done, we're closer to each other and closer to God. We've been forced to sort through the chaff, cut through the fluff, and get to the heart of it. All of it. So as much as I hate that anyone deals with any of the ASD spectrum, and as much as I want to see all the problems of all these families go away, at the end of the day I have to say that in the same way boot camp makes a soldier, the autism battle makes we warrior mamas and daddies and brothers and sisters of autism tougher, leaner, and better. A little more edgy? Yes. More stressed? Certainly. But less likely to assume. More likely to be truly thankful than we were before. In the end are we thankful for autism? NO. We are thankful for Ryan, we are thankful for what we have learned, for each other, and for the God who gives us every good thing.
How has autism challenged us, you ask?
It's challenged us to live.
Thanks be to God!!!
On these days the funny thing is, I don't realize how different our lives really are. I get tired and start to beat up on myself a bit for the dishes in the sink, the cans of paint by the door, the border that needs to come down in the kitchen. Then I hear a random scream and realize, "oh yeah..." and it all comes together. Thankfully, I have a husband who is willing to learn this aspect of loving his wife. I won't lie. He does make mistakes. We both do. We are, at times, insensitive to each other, selfish, and just plain grumpy. But that's where grace and mercy come in, and oh do we ever need that.
Yesterday was a fun day, and looking back, it was rather busy. A friend needed an interview with a special needs mom, so I got to do that and really enjoyed it. For one, I got to spend time in my home with someone who gets it. That's always valuable. Equally valuable is long phone conversations with good friends just to catch up... friends who trust that you're doing the best you can with what you have... yeah, that's amazing too.
Anyway, the questions were interesting. The ones that stick out the most are something about how your child's special need has challenged your relationships (family, friends, marriage, etc.). Wow. Talk about shoving Niagara Falls through a drinking straw. As I struggled to answer without giving her writer's cramp (yes, she used this low-tech papery blog thing called a "notebook" and this magical stick called a "pen"), I knew that there was too much. Did my best, though. But not all of it would fit. It's too huge.
What has Autism done to challenge us?
Autism has made us more aware and thankful than we could ever have imagined for every milestone in all our kids. Once you've had a child who didn't reach them, they are celebrated with the fervor of, say, winning the "Piston Cup" or making it to "P Sherman 42 Wallaby Way Sydney". For those non-Pixar watchers, with winning the Stanley Cup or the Super Bowl. We get excited.
Autism has made us hurt more than we wanted to. The pain of realizing your child has challenges that you cannot immediately change... it's not a scrape on the knee, a cold, or a stomach bug that will pass. It's in your face and demanding all the time. It does not take time off because you've been doing so great. It alters your thinking about everything. It forces you to plan EVERYTHING down to the letter. A family trip to the mall? To church? To the park? Every last blasted step must be thought out. We are picture-scheduled and social-storied, this-then-that-ed to the nth degree. It stings you in places you didn't know anything could reach, and even in places you didn't know you had. There are days and times when it brings you to your knees in ways you never thought possible.
Autism magnifies the meanness and kindness of people. We have seen people go out of their way to connect with Ryan, and we see all the time people go out of their way to avoid him and us. The most glaring example is the difference between going out with just the two littles and with Ryan. Go out with just Mae and Richie, and you get "oh, are they twins?" and "oh, what beautiful children!" and "oh, you have your hands full". I usually add "you should see me when I have their six year old brother, too." Go out with Ryan? Few people look us in the eye. Fewer still speak. I've even heard comments like, when I told someone I was pregnant with Maelynn, "oh, I thought surely you'd had your tubes tied!" From afraid to speak to unwanted advice to angry comments at his behavior, there is a marked difference in how we're treated. Funny thing is, I feel guilty when it feels normal. Almost like I'm lying, you know?
Autism searches your marriage for weak spots and exploits them. If you're not good, effective communicators, if you haven't learned to forgive (and that forgiveness means you give up your right to punish the person who hurt you), if you're not playing as a team... all those things are magnified. They were problems before, but they'll really be problems now. Having children period does this, but having special needs children will go a few steps further. Our time together is sacred. Once the kids go to bed, once we have our chores done, we have big kid time. Ice cream and a non-animated show, video games, air hockey on the iPad, or a movie, something that is light and fun at least once a week if we can swing it. Kids are in bed, we know they're safe, and we chill and take time to be Eric and Crystal, those people who only dated a week and a half before they got engaged, and not Daddy and Mommy. But I'd lie if I said we never argue, never get mad and cranky and say things we wish we hadn't. Pressure is too much at times, and we're fallen humans.
Autism drives you to or from your faith. If you are angry at God for the special need your child has, tell Him. He can take it... He's GOD for cryin' out loud. He hears and knows your thoughts anyway, so you might as well spill it. Work through it. For me, there's no way to deal without knowing someone else is in charge. I still do my best, I still advocate for my son, but at the end of a day of screaming meltdowns and utter frustration, it's nice to know you can let go of the rope, because you know He's there to catch you. It's also nice to know there's a purpose and plan for this (Jeremiah 29:11). Obviously (I hope), autism has driven us to seek the Lord more fervently than ever.
Autism makes you let go of things that don't... and really never did... matter. My house is not uber-tidy. The floor of my van is covered in an odd assortment of old french fries, cracker crumbs, and cheerios, there are picture schedule icons everywhere, there are toys all over the place, but I do my best. The sheets are clean, the diapers are clean, the kids are fed. On the days when I can't even say that, oh well. See above. Today I needed to be painting, making a packing list, mopping, or doing any number of things, but I like to think that the time I spent in the floor with the "bears" (bear counters), books, and watching T-O-Y three (Ryan's name for Toy Story 3) are going to be more remembered by the kids. Yes, I do clean house, but neat freak? Oh no. And it's certainly not a showplace... but it is happy and comfortable.
Autism forces you to let go of some dreams you didn't even realize were dreams to make room for your child's safety and well-being. And yours. Situations you used to enjoy are just too frustrating. Small talk is almost unbearable (can't lie... I was never good at that anyway). Things you once took for granted are now in the "yeah right" dream category.
Autism makes you grateful for so many things you never thought about before. It makes you angry about things you never knew existed. It brings words like segregation, integration, inclusion, separation, isolation, and frustration to new levels of understanding. It makes you more sensitive and tougher at the same time. It brings to light so many ways people need to be loved, and the fact that almost none of them are exactly the same. It makes the everyday so flustering, but at the same time, on the rare occasions something goes completely smoothly, it's so much sweeter.
It has taught us that standing in the midst of a time when you have no idea what is going to happen next, where the patience for the rest of the fit will come from, or what in the world you're going to do... when you stand there, tears pouring, heart-sick, worn, weary, meltdown-weathered and exhausted and say with the shred of energy you have left that there is a reason... He is in charge, He has not left us, His mercies are new every morning, and we will rise to greet tomorrow with joy, for it is a day He has made... when you reach through the pain and extend a hand and heart to others in the same situation... when we just get up and do it all again and again... that is worship. We want to live it, not just survive it.
We are there right now. A major time of transition. No idea how it will go. We have a pretty good idea of how to prepare, and that consists of making sure the picture schedule has been in play, he's used to getting up at the hour he needs to go to school, we've worked on sight words, counting, sorting, waiting, sharing, asking for what we want, going to the bathroom without following a timer, everything we can think of, and now we have to stay the course, and trust. There are moments when I think he's gonna blow the top off of all the changes, and there are moments I think we've lost our minds. One minute he's counting, reading out loud, and hugging his brother and the next minute, he's screaming, hitting himself, and shoving his sister off the couch. Just when we think something's gonna go one way it goes flyin' the other.
So how has Autism challenged our family? How has it changed us?
I hate to admit it, but when all's said and done, we're closer to each other and closer to God. We've been forced to sort through the chaff, cut through the fluff, and get to the heart of it. All of it. So as much as I hate that anyone deals with any of the ASD spectrum, and as much as I want to see all the problems of all these families go away, at the end of the day I have to say that in the same way boot camp makes a soldier, the autism battle makes we warrior mamas and daddies and brothers and sisters of autism tougher, leaner, and better. A little more edgy? Yes. More stressed? Certainly. But less likely to assume. More likely to be truly thankful than we were before. In the end are we thankful for autism? NO. We are thankful for Ryan, we are thankful for what we have learned, for each other, and for the God who gives us every good thing.
How has autism challenged us, you ask?
It's challenged us to live.
Thanks be to God!!!
Monday, July 18, 2011
Resolve... it's not just for carpet.
Lately our house has been pretty screamy. Ryan loves to watch movies, certain ones... and he has an astouding memory. He has been doing more vocalizing lately! This is fabulous, really. The fact that he's interested in saying words is amazing. He has even begun, when we offer him something and he doesn't want it, to say "No grilled cheese (or go home, or whatever)." We are thrilled about this! But it seems like for every great thing, autism brings another equally gut-wrenching thing.
Maelynn and Richie adore their big brother. Whatever he does is golden. Stimming, fits, even if he just got in trouble for something and the littles heard the whole thing, two seconds later they have to try it too. Everything from jumping on the couch to self-injury. It's all cool if brother does it. So you can imagine how fun it is in our house when Ryan screams along with characters in a show, or even in a book on the ipad. Immediately, the littles follow suit, not to be outdone. My husband has a picture on his phone of a rare night when Ryan fell asleep at the table. Richie laid his head on the table and pretended to be asleep, too. Sometimes, Ryan thinks this is hilarious! The most fun was when, after we blessed our food, Ryan said "aaaaaay-men!" and Richie, being Richie, repeated. They did this several times, each time a little louder. So very cute and sweet! We all laughed and laughed!
Then there are the times when it's more difficult to laugh. The times when he is so beside himself, frustrated, angry, and confused that there is no calming him down. The boys' birthdays are just three days apart. When they get birthday money, we've begun letting them shop for their own stuff somewhat. We guide them to avoid letting them do something like spending all their money on every ball they see (that's Richie's schtick). The problem with this is once Ryan has done something he likes to do, he will ask... no, demand... to do it every day, all the time. The most common ones are "ride the people train", "ride the elevator", "Pack your swimsuit", and "go see Miss Staci". Sometimes he'll ask once, I'll explain, and the explanation is accepted. More often he'll ask for the same things I COULD SWEAR fifty times an hour. Say no? He screams and beats his chest, legs or head. Or the wall, table, whatever.
Let me make this clear and fast, since not all of you know us... we do NOT give in to screaming, crying, or demanding children... or anyone else for that matter. This can mean hours of ask-explain-fit. Ask-explain-fit. Repeat ad nauseum. At times the fits go into full meltdown. Running around, screaming, hitting himself, anything else in sight, crying, gutterally screaming until he's gagging. There are almost always little bruises on his chest, which breaks my heart.
When Ryan asked last week to go to the store, we were fine with that. We were on our way that direction anyway. So every time he asked from the back of the van, yes, buddy... we're going. Hang on. Then we get there, and he was fine in the cart with his brother. We needed paint for his room. By this time, I couldn't think because of the wiggling and fits for "look at toys". Eric and I tried to reason to no avail, telling him that we were picking colors for his room, tried to let him help... nothing. The people at the paint counter were awesome, just talking to us even though you could tell one was pretty speechlessly uncomfortable. We picked a great Thomas color, and after the thrill of watching the paint mixer, it was time to shop for some other things. The fit continued over toys until he was indescribably scream-demanding to look at toys, then vaccuum cleaners, then toys again, then fans. Trying to think and losing the battle, I suggested Eric take Ryan to potty with him... after all, Ryan might have to go too. Five minutes of silence. Sweet.
After they got back, the fits only escalated to the point where, in the much too long and slow checkout line, all I could do was keep him from hitting himself. It was noisy, but not embarrassing.
It was beyond embarrassing. It was painful.
It's hard enough to watch your child beat himself silly and scream till he gags. It's hard enough to wait in line, knowing you have to have the things in your basket. But having people obviously stop to stare? Just to stare? Just to stare and shake their heads in, I don't know, pity? Anger? Pride that their kids never did that? The surety that they could do better?
I know the fit was over the top. I know I could have left the basket. I know, I know. But the thing is, if I just left all the time, I'd go the whole summer without groceries. Or Ryan would never enter a store. Or a restaurant. I've encountered people recently who I'm sure would rather not be bothered by the noise of autism. To tell the truth, I'd rather not be bothered by autism either! I'd love for Ryan to have the ability to effectively communicate everything he needs, process everything around him without the need for sensory input hitting provides, and for him to act just like his brother and sister.
But that isn't Ryan. At least not yet.
It might be him someday, and we will continue to work hard to help him understand the world. If we don't try, if we don't endure the stares and the glares, the loud, cowardly not-to-our-face-yet-loud-enough-to-hear comments (thanks, dude in the children's restaurant this weekend), we would not be helping Ryan at all. We do have to remember who we are when these things happen... called to be slow to anger, slow to speak. We have to recognize the openings to share and educate, but never at the risk of doing more harm than good. We have to realize, also, that while it would be great if everyone realized that it's not their place to judge our parenting, that's not going to happen. We have to remember that by the grace of God, that could be us being insensitive... and it probably has been and we didn't even know it.
I would love to be able to say that I smiled and stayed perfectly calm and hopeful through the store ordeal and the restaurant ordeal, but I'd be lying. I nearly glared a hole in the guy's head on his way out of the restaurant. I bawled the whole way back to town from the store. There are days I feel somewhat trapped in the house. It takes an indescribable amount of energy to muster the resolve required to shove away the fear that something awful will happen or be said.
Yesterday we almost lost this battle. On the way into my inlaws' church, we had another one of these fits, this time over trains. Church=trains to Ryan, and that's something we have to address. But it's hard to address anything when you can't get in the building for the meltdown. We almost went home. We didn't. As I sat there with Ryan fiddling with his "red" (a pocket etch-a-sketch) nestled between Eric and I, my mind wandered to how many parents of ASD kids might be in the same room as I was. I knew of one other couple, maybe two with kids on the spectrum in the church. Out of the hundreds of people before me, maybe four people got it, not counting our family.
I wondered how many there were outside the doors. I wondered how many people just couldn't muster the resolve to endure being so very different. Let's face it. A six year old boy screaming and beating his chest at random is not a terribly welcome addition in any place where a group is gathered together to do anything remotely quiet or organized. The week before, for the first time, I lost such resolve myself. For the first time, I just didn't have what it took. I hope it never happens again, but that's just another promise I can't make.
The fits are hard wherever we are. They leave me thinking, as the tears roll and in between sobs on the way home, about so many things. Wishing I could quickly explain that he can't help it in a way that is meaningful... wishing I could change the world and make it a place where people trust each other, and understand that trust has to be issued to each other more generously than judgement. The funny thing about that scale is the judgment stings more than the sensitivity and trust heal. So there has to be more trust, more sensitivity than stares, ugly comments, or unsolicited advice. Do I think this will happen? I wish it would.
I wish that would happen for not just my family, but for all the families linked to all the other blogs I read, all the mothers and fathers and people with ASD who need so desperately to be loved not in a conventional way, but in a way that is tangible to them. I read of so many broken hearts, so many lives in which survival mode is the norm. For all those families, I pray for peace and comfort.
For the parents who still wait for the first word... for 18 or 20 years.
For the parents who get only three or four hours of sleep.
For the parents who see beaches and pools not as relaxation, but as drowning hazards.
For the children who are covered in self-inflicted bruises.
For the parents who know the pain of not feeling... or not being... welcome.
For all of you who deal with the seizures that Ryan's been spared.
For all of you who know the pain of the guilt of wondering if you're doing enough.
For all of you who are still potty training at 5, 6, 7, 8, 9...
For all of you who choke up when you see something specially made to benefit your child's need or just to make your child smile.
For all of you who know the immediate sick feeling when you haven't seen your child for even a second.
For all of you who know the kick in the gut of having everything you offer, every question you ask answered with a scream, sometimes for days on end.
For all of you who know that those of us who experience the deepest pain cannot be pitied; for we also experience the greatest joy.
For all of us, I pray we will all find peace by casting all our anxieties on Him, because He cares for us. (1Peter 5:7 ESV)
And I have to tell you... if we hadn't gone Sunday, we would have missed the encouragement of one person who knows an ASD kid, and another who didn't, but just got a kick out of watching him, feet nearly in my face and all.
Those friendly, accepting faces, though they didn't solve any of our problems, were gifts of the Lord. To be met with smiles and looks in the eye instead of sideways glares was simply heavenly. To be enjoyed and not tolerated was blissful.
Thanks be to God!!!
Maelynn and Richie adore their big brother. Whatever he does is golden. Stimming, fits, even if he just got in trouble for something and the littles heard the whole thing, two seconds later they have to try it too. Everything from jumping on the couch to self-injury. It's all cool if brother does it. So you can imagine how fun it is in our house when Ryan screams along with characters in a show, or even in a book on the ipad. Immediately, the littles follow suit, not to be outdone. My husband has a picture on his phone of a rare night when Ryan fell asleep at the table. Richie laid his head on the table and pretended to be asleep, too. Sometimes, Ryan thinks this is hilarious! The most fun was when, after we blessed our food, Ryan said "aaaaaay-men!" and Richie, being Richie, repeated. They did this several times, each time a little louder. So very cute and sweet! We all laughed and laughed!
Then there are the times when it's more difficult to laugh. The times when he is so beside himself, frustrated, angry, and confused that there is no calming him down. The boys' birthdays are just three days apart. When they get birthday money, we've begun letting them shop for their own stuff somewhat. We guide them to avoid letting them do something like spending all their money on every ball they see (that's Richie's schtick). The problem with this is once Ryan has done something he likes to do, he will ask... no, demand... to do it every day, all the time. The most common ones are "ride the people train", "ride the elevator", "Pack your swimsuit", and "go see Miss Staci". Sometimes he'll ask once, I'll explain, and the explanation is accepted. More often he'll ask for the same things I COULD SWEAR fifty times an hour. Say no? He screams and beats his chest, legs or head. Or the wall, table, whatever.
Let me make this clear and fast, since not all of you know us... we do NOT give in to screaming, crying, or demanding children... or anyone else for that matter. This can mean hours of ask-explain-fit. Ask-explain-fit. Repeat ad nauseum. At times the fits go into full meltdown. Running around, screaming, hitting himself, anything else in sight, crying, gutterally screaming until he's gagging. There are almost always little bruises on his chest, which breaks my heart.
When Ryan asked last week to go to the store, we were fine with that. We were on our way that direction anyway. So every time he asked from the back of the van, yes, buddy... we're going. Hang on. Then we get there, and he was fine in the cart with his brother. We needed paint for his room. By this time, I couldn't think because of the wiggling and fits for "look at toys". Eric and I tried to reason to no avail, telling him that we were picking colors for his room, tried to let him help... nothing. The people at the paint counter were awesome, just talking to us even though you could tell one was pretty speechlessly uncomfortable. We picked a great Thomas color, and after the thrill of watching the paint mixer, it was time to shop for some other things. The fit continued over toys until he was indescribably scream-demanding to look at toys, then vaccuum cleaners, then toys again, then fans. Trying to think and losing the battle, I suggested Eric take Ryan to potty with him... after all, Ryan might have to go too. Five minutes of silence. Sweet.
After they got back, the fits only escalated to the point where, in the much too long and slow checkout line, all I could do was keep him from hitting himself. It was noisy, but not embarrassing.
It was beyond embarrassing. It was painful.
It's hard enough to watch your child beat himself silly and scream till he gags. It's hard enough to wait in line, knowing you have to have the things in your basket. But having people obviously stop to stare? Just to stare? Just to stare and shake their heads in, I don't know, pity? Anger? Pride that their kids never did that? The surety that they could do better?
I know the fit was over the top. I know I could have left the basket. I know, I know. But the thing is, if I just left all the time, I'd go the whole summer without groceries. Or Ryan would never enter a store. Or a restaurant. I've encountered people recently who I'm sure would rather not be bothered by the noise of autism. To tell the truth, I'd rather not be bothered by autism either! I'd love for Ryan to have the ability to effectively communicate everything he needs, process everything around him without the need for sensory input hitting provides, and for him to act just like his brother and sister.
But that isn't Ryan. At least not yet.
It might be him someday, and we will continue to work hard to help him understand the world. If we don't try, if we don't endure the stares and the glares, the loud, cowardly not-to-our-face-yet-loud-enough-to-hear comments (thanks, dude in the children's restaurant this weekend), we would not be helping Ryan at all. We do have to remember who we are when these things happen... called to be slow to anger, slow to speak. We have to recognize the openings to share and educate, but never at the risk of doing more harm than good. We have to realize, also, that while it would be great if everyone realized that it's not their place to judge our parenting, that's not going to happen. We have to remember that by the grace of God, that could be us being insensitive... and it probably has been and we didn't even know it.
I would love to be able to say that I smiled and stayed perfectly calm and hopeful through the store ordeal and the restaurant ordeal, but I'd be lying. I nearly glared a hole in the guy's head on his way out of the restaurant. I bawled the whole way back to town from the store. There are days I feel somewhat trapped in the house. It takes an indescribable amount of energy to muster the resolve required to shove away the fear that something awful will happen or be said.
Yesterday we almost lost this battle. On the way into my inlaws' church, we had another one of these fits, this time over trains. Church=trains to Ryan, and that's something we have to address. But it's hard to address anything when you can't get in the building for the meltdown. We almost went home. We didn't. As I sat there with Ryan fiddling with his "red" (a pocket etch-a-sketch) nestled between Eric and I, my mind wandered to how many parents of ASD kids might be in the same room as I was. I knew of one other couple, maybe two with kids on the spectrum in the church. Out of the hundreds of people before me, maybe four people got it, not counting our family.
I wondered how many there were outside the doors. I wondered how many people just couldn't muster the resolve to endure being so very different. Let's face it. A six year old boy screaming and beating his chest at random is not a terribly welcome addition in any place where a group is gathered together to do anything remotely quiet or organized. The week before, for the first time, I lost such resolve myself. For the first time, I just didn't have what it took. I hope it never happens again, but that's just another promise I can't make.
The fits are hard wherever we are. They leave me thinking, as the tears roll and in between sobs on the way home, about so many things. Wishing I could quickly explain that he can't help it in a way that is meaningful... wishing I could change the world and make it a place where people trust each other, and understand that trust has to be issued to each other more generously than judgement. The funny thing about that scale is the judgment stings more than the sensitivity and trust heal. So there has to be more trust, more sensitivity than stares, ugly comments, or unsolicited advice. Do I think this will happen? I wish it would.
I wish that would happen for not just my family, but for all the families linked to all the other blogs I read, all the mothers and fathers and people with ASD who need so desperately to be loved not in a conventional way, but in a way that is tangible to them. I read of so many broken hearts, so many lives in which survival mode is the norm. For all those families, I pray for peace and comfort.
For the parents who still wait for the first word... for 18 or 20 years.
For the parents who get only three or four hours of sleep.
For the parents who see beaches and pools not as relaxation, but as drowning hazards.
For the children who are covered in self-inflicted bruises.
For the parents who know the pain of not feeling... or not being... welcome.
For all of you who deal with the seizures that Ryan's been spared.
For all of you who know the pain of the guilt of wondering if you're doing enough.
For all of you who are still potty training at 5, 6, 7, 8, 9...
For all of you who choke up when you see something specially made to benefit your child's need or just to make your child smile.
For all of you who know the immediate sick feeling when you haven't seen your child for even a second.
For all of you who know the kick in the gut of having everything you offer, every question you ask answered with a scream, sometimes for days on end.
For all of you who know that those of us who experience the deepest pain cannot be pitied; for we also experience the greatest joy.
For all of us, I pray we will all find peace by casting all our anxieties on Him, because He cares for us. (1Peter 5:7 ESV)
And I have to tell you... if we hadn't gone Sunday, we would have missed the encouragement of one person who knows an ASD kid, and another who didn't, but just got a kick out of watching him, feet nearly in my face and all.
Those friendly, accepting faces, though they didn't solve any of our problems, were gifts of the Lord. To be met with smiles and looks in the eye instead of sideways glares was simply heavenly. To be enjoyed and not tolerated was blissful.
Thanks be to God!!!
Sunday, July 3, 2011
Ranch terror
"I'm sorry, we're out of ranch."
That's what the guy at the scary clown restaurant uttered in a little-too chipper manner the other day. Those words are even scarier than the clown. Miracle of miracles, thank you Lord, Ryan chose to eat his chicken nuggets with catsup that day. We'd waited for our food longer than usual in a fast-food establishment already, and Ryan was getting a little hyper, to say the least ("a little hyper" for a kid like Ryan is... well, cross a spider monkey and a laughing hyena and that's close. Hey, at least he's happy like that). He settled, ate, and we were able to get done and get our groceries.
Fast forward to this evening. Mom is at work out of town for the weekend, and we chose to try a restaurant that we'd heard several good things about (including that they were super sweet with kids... and they were). We picked a corner table, out of the way. The table was perfectly placed in a front window so the guyzos could watch the trains (trains are big in my hometown... really, really big). It was completely empty except for us when we arrived. Knowing that most of the churches in town are in session Sunday evenings around six, I thought this was the perfect time to give 'er a test run. Don't even ask if we visit churches while we're here. Short answer? Too much stress. I'd love to, but it's too much.
So we tried it. With no one in the place, I silently spiked the ball. Oh yeah! Mama one, autism ZIP!
First, I picked a table that was closest to the stupid sticky fly strip. These are pretty common in this part of the world. "Shoo-flies," as Ryan calls them, are meal-killers and deal-breakers for our boy. I think it's some hybrid of the buzzing and unpredictability combined with that light touch if they land on your skin. The minute they start... even one... buzzing around Ryan, he starts shaking, crying "it's a SHOO-FLY", covering his ears, and generally freaking out. One uber-hilarous, shocking moment... Ryan tried to pet the fly. He gently stretched out one finger and tried to touch the fly on the window. Needless to say, the shoo-fly wasn't interested in making friends. He was pretty talented, too. Eric is pretty awesome at killing the little buggers, but this one eluded him.
Next mistake... ambition. Silly mama. I ordered some fried quesadilla that looked like it'd be just like cheesy chippies at our usual Mexican restaurant back home. Soon as it came out, he asked for a burger. D'oh!
Then, the little dude needed ranch for chips. He wasn't interested in the cheese dip we ordered, other than making a nice chip-bouquet using the cup as a vase.
That's pretty much it. Well, those are the antagonists. The behavior resulting from the antagonists included banging on the window, screaming, beating his chest, banging on the table, yelling things like "want some RAAAAANCH!", and thrashing around in his chair.
The first mistake was actually trying to go out in the first place. Mom's having a bit of a drain problem that makes dishes a challenge, and she's looking at moving very soon. Long, long story. Ryan misses Granny while she's at work, and his behavior shows it. We knew he was having a rough day, yet we needed dinner... I could have cooked. I could have brought something home. But no.
This is one of the many times Eric and I want to smack ourselves, repeating "STUPIDSTUPIDSTUPID!"
But we've learned, among a lot of things, that you have to just keep swimming (thanks, Nemo). Keep going. Keep smiling. Keep your chin up. Even when there are tears dripping down your face, do your best to stay calm, respond out of love. We don't have this mastered, mind you. Knowing and doing are separate actions.
I must admit, when we got there, I thought it was going to be easy. Then, when people started arriving (yeah, I was wrong again) I was looking around to see if I knew anyone. When the fits started, I stopped looking around.
That's hard to admit.
It's hard to watch your three year old and 17 month old act like little angels, and be largely ignored while you deal with mister "ranch is life". It's also hard but amazing to watch your three year old give his favorite toy to his older brother to help him calm down.
I am proud of Ryan and all he is, just as I am proud of Richie and Maelynn. I just can't describe how it feels to watch your son in such a disturbed frenzy, powerless to help other than to stay calm and ride it out. My dear friend Tawana, who also has an ASD boy, said one time that she wished there were an "autism bubble" that she could throw up when her sweet boy is melting down in public. A little, instant privacy bubble. Oh, how I wish there was such a thing. The thing is, these things are not really fits. Not all of them. Telling the difference between a fit or a meltdown is half the battle sometimes. There are times that if I'm thinking I can avoid meltdowns, or at least have them at home.
Remember the poem "Footprints in the Sand"? You can view and read it here. I also included it below.
There are so many times I don't necessarily "feel" peaceful, yet I don't lose it. The things that frustrate us the most continue, yet we keep going. We keep starting over. It's not always fun, but we manage. We figure out a way to laugh, or at least not lose faith. People as us how we do it. The answer?
That is when He carries us.
Those times when we don't know what's next, don't know what else to take away or to use to reason, or when we've been completely outsmarted and our carefully conceived plans are made to look ridiculous in an instant, He carries us. When we look at each other for comfort, but all we find is a mirror of the frustration, He carries us. Holds us together. We will not quit living completely. We will adapt, we will guide, direct, and fight through it... but we will certainly not quit!
How do we do it? So many people have asked.
We don't. He does.
Praise Him!
That's what the guy at the scary clown restaurant uttered in a little-too chipper manner the other day. Those words are even scarier than the clown. Miracle of miracles, thank you Lord, Ryan chose to eat his chicken nuggets with catsup that day. We'd waited for our food longer than usual in a fast-food establishment already, and Ryan was getting a little hyper, to say the least ("a little hyper" for a kid like Ryan is... well, cross a spider monkey and a laughing hyena and that's close. Hey, at least he's happy like that). He settled, ate, and we were able to get done and get our groceries.
Fast forward to this evening. Mom is at work out of town for the weekend, and we chose to try a restaurant that we'd heard several good things about (including that they were super sweet with kids... and they were). We picked a corner table, out of the way. The table was perfectly placed in a front window so the guyzos could watch the trains (trains are big in my hometown... really, really big). It was completely empty except for us when we arrived. Knowing that most of the churches in town are in session Sunday evenings around six, I thought this was the perfect time to give 'er a test run. Don't even ask if we visit churches while we're here. Short answer? Too much stress. I'd love to, but it's too much.
So we tried it. With no one in the place, I silently spiked the ball. Oh yeah! Mama one, autism ZIP!
First, I picked a table that was closest to the stupid sticky fly strip. These are pretty common in this part of the world. "Shoo-flies," as Ryan calls them, are meal-killers and deal-breakers for our boy. I think it's some hybrid of the buzzing and unpredictability combined with that light touch if they land on your skin. The minute they start... even one... buzzing around Ryan, he starts shaking, crying "it's a SHOO-FLY", covering his ears, and generally freaking out. One uber-hilarous, shocking moment... Ryan tried to pet the fly. He gently stretched out one finger and tried to touch the fly on the window. Needless to say, the shoo-fly wasn't interested in making friends. He was pretty talented, too. Eric is pretty awesome at killing the little buggers, but this one eluded him.
Next mistake... ambition. Silly mama. I ordered some fried quesadilla that looked like it'd be just like cheesy chippies at our usual Mexican restaurant back home. Soon as it came out, he asked for a burger. D'oh!
Then, the little dude needed ranch for chips. He wasn't interested in the cheese dip we ordered, other than making a nice chip-bouquet using the cup as a vase.
That's pretty much it. Well, those are the antagonists. The behavior resulting from the antagonists included banging on the window, screaming, beating his chest, banging on the table, yelling things like "want some RAAAAANCH!", and thrashing around in his chair.
The first mistake was actually trying to go out in the first place. Mom's having a bit of a drain problem that makes dishes a challenge, and she's looking at moving very soon. Long, long story. Ryan misses Granny while she's at work, and his behavior shows it. We knew he was having a rough day, yet we needed dinner... I could have cooked. I could have brought something home. But no.
This is one of the many times Eric and I want to smack ourselves, repeating "STUPIDSTUPIDSTUPID!"
But we've learned, among a lot of things, that you have to just keep swimming (thanks, Nemo). Keep going. Keep smiling. Keep your chin up. Even when there are tears dripping down your face, do your best to stay calm, respond out of love. We don't have this mastered, mind you. Knowing and doing are separate actions.
I must admit, when we got there, I thought it was going to be easy. Then, when people started arriving (yeah, I was wrong again) I was looking around to see if I knew anyone. When the fits started, I stopped looking around.
That's hard to admit.
It's hard to watch your three year old and 17 month old act like little angels, and be largely ignored while you deal with mister "ranch is life". It's also hard but amazing to watch your three year old give his favorite toy to his older brother to help him calm down.
I am proud of Ryan and all he is, just as I am proud of Richie and Maelynn. I just can't describe how it feels to watch your son in such a disturbed frenzy, powerless to help other than to stay calm and ride it out. My dear friend Tawana, who also has an ASD boy, said one time that she wished there were an "autism bubble" that she could throw up when her sweet boy is melting down in public. A little, instant privacy bubble. Oh, how I wish there was such a thing. The thing is, these things are not really fits. Not all of them. Telling the difference between a fit or a meltdown is half the battle sometimes. There are times that if I'm thinking I can avoid meltdowns, or at least have them at home.
Remember the poem "Footprints in the Sand"? You can view and read it here. I also included it below.
| One night I dreamed I was walking along the beach with the Lord. |
| Many scenes from my life flashed across the sky. |
| In each scene I noticed footprints in the sand. |
| Sometimes there were two sets of footprints, |
| other times there were one set of footprints. |
| This bothered me because I noticed |
| that during the low periods of my life, |
| when I was suffering from |
| anguish, sorrow or defeat, |
| I could see only one set of footprints. |
| So I said to the Lord, |
| "You promised me Lord, |
| that if I followed you, |
| you would walk with me always. |
| But I have noticed that during |
| the most trying periods of my life |
| there have only been one |
| set of footprints in the sand. |
| Why, when I needed you most, |
| you have not been there for me?" |
| The Lord replied, |
| "The times when you have |
| seen only one set of footprints, |
| is when I carried you." |
| Mary Stevenson |
There are so many times I don't necessarily "feel" peaceful, yet I don't lose it. The things that frustrate us the most continue, yet we keep going. We keep starting over. It's not always fun, but we manage. We figure out a way to laugh, or at least not lose faith. People as us how we do it. The answer?
That is when He carries us.
Those times when we don't know what's next, don't know what else to take away or to use to reason, or when we've been completely outsmarted and our carefully conceived plans are made to look ridiculous in an instant, He carries us. When we look at each other for comfort, but all we find is a mirror of the frustration, He carries us. Holds us together. We will not quit living completely. We will adapt, we will guide, direct, and fight through it... but we will certainly not quit!
How do we do it? So many people have asked.
We don't. He does.
Praise Him!
Praise Him! praise Him! Jesus, our blessed Redeemer!
Sing, ye saints! His wonderful love proclaim!
Hail Him! hail Him! mightiest angels in glory;
Strength and honor give to His holy name!
Like a shepherd, Jesus will feed His people,
In His arms He carries them all day long;
O ye saints that live in the light of His presence,
Praise Him! praise Him! ever in joyful song!
Praise Him! praise Him! Jesus, our blessed Redeemer,
For our sins He suffered and bled and died;
He, our Rock, our Hope of eternal salvation,
Hail Him! hail Him! Jesus, the Crucified;
Loving Savior, meekly enduring sorrow,
Crowned with thorns that cruelly pierced His brow;
Once for us rejected, despised, and forsaken,
Prince of Glory, ever triumphant now.
Praise Him! praise Him! Jesus, our blessed Redeemer,
Heavenly portals, loud with hosannahs ring!
Jesus, Savior, reigneth for ever and ever;
Crown Him! crown Him! Prophet and Priest and King!
Death is vanquished! Tell it with joy, ye faithful,
Where is now thy victory, boasting grave?
Jesus lives! No longer thy portals are cheerless;
Jesus lives, the mighty and strong to save.
Source: http://www.hymnal.net/hymn.php/h/235#ixzz1R6dJ0mcP
Saturday, June 18, 2011
They want to be just like you.
Have you ever packed for a trip with five people?
Have you ever packed a trip for five people with them all in the house? Gets interesting. The saving grace for me is my husband picking out his own clothes. A guy who helps. Who knew?
Single mamas, you have my utmost respect. Mamas whose husbands are out more than they're in-town, you do too. I do not know how you do it. I don't know how mine did, and there was just one of me!
When we're getting ready to go somewhere, I almost always do all the packing. Since back surgery, I do the loading into the van, too. But even without back surgery, there's always something Eric needs to be doing. Most guys, I'll bet, would do their own thing without a thought to their wives. My husband is the opposite. He wants to do for me, then do his own stuff. The only problem is that would leave him with no time to do the things he needs to do. Pretty cool, huh. It's my responsibility as his wife to NOT take advantage of this, since I don't want to be disrespectful.
No, I really don't. Not kidding.
I'm not into the man-bashing, war of the sexes mess so many women are. Yes, there are differences. Yes, at times they can be hilarious... but when hilarious turns to running over, no longer building up, and to downright disrespect and tearing down, the differences are no longer worthy of jocularity. There's a line.
At this point I have to admit I'm not into the "dad's right even if we go off a cliff" thing. Marriages only work when both parties are interested in the whole bible and all its truths and principles, and not just the "wives obey your husbands" part. And it is in there, sisters. I'm not throwin' you under the bus, girls. Hang with me.
Check out 1 Peter 3.
The thing that makes it easier for me to respect my husband, to revere him, to obey (yes, even when I think I know better), is that my husband read the rest of the passage. Not only did he read it, he had one better. His Dad lived it. His father was and is a bible he could read by the way he treats his wife and children.
I did not grow up with men who really knew what this passage meant. My childhood was filled with fear of men, as creatures who delight in exerting control. Men were scary folk to be feared who drank too much, threw things, hit people, used bad language, and were just generally hurtful beings. My father was one such man. Having demons from childhood he'd never worked through, such as an alcoholic, sociopathic father and a mother who liked to, we'll just say, "run around," he tried most of his life to fill the God-shaped hole in his heart with women, drugs, alcohol, work... anything that he thought would work. He sought hard most of his life to be loved. The problem with that was that people fail. Work stops. Chemicals eventually eat you alive. The only way he knew to deal with problems was with fists, alcohol, and screaming obscenities. I've heard stories. Not only from him, not only when he was sober, not only when he was the opposite. No one can ever know everything about someone, but I knew enough never to make him angry at all cost. And that knowledge did not come simply from stories.
So imagine my surprise when, after a lifetime of this mess and not giving the "father-figure" types in my life much of a chance, I meet Eric. Sweet, unassuming, loving Eric. No, I did not say perfect Eric. We both make mistakes. But of all the men roaming the earth, he knows how to be a man.
He may not work with his hands much, but you should hear him play trombone. You should hear the music he writes. You should go to a concert, marching contest, or drum corps show with him, then discuss it afterward. It's amazing what he remembers, what he heard.
No, he won't eat at Hooters with you. He won't go to a strip club, either. Don't ask. No, I did not make that rule. He made it for himself, long ago, because he was raised to respect women for real. Yes, I am very proud of this! It makes me stand a little straighter, feel a little better about what I see in the mirror, and know with more confidence that he really was at work when he doesn't get home until ten.
No, he doesn't drive a sportscar. He is proud to drive the truck he has, that belonged to my Dad (stepdad). He is absolutely cool with driving a minivan, complete with Tinkerbell steering wheel cover and floor mats.
He doesn't make getting things past me a pastime. He's not sneaky, he is truthful. He is home when he has free time, ready to do whatever it is that needs doing.
Yes, whatever needs doing includes diapers. Cloth diapers, and yes, he rinses them. Now that he's home on vacation, he learned to wash them "so that more than one of us is doing that" in his words. No, I didn't ask him to learn.
Until he had back surgery in January, for three kids, he's been the night captain. He proudly gets up, searches for binkies, got bottles, changes diapers, finds loveys, and rocks whoever back to sleep.
He listens, and in listening, wants to understand. He wants to understand why I feel the way I do about things. He wants to know what I think.
As I said earlier, he will be the first person to say I can do the job he does at school. He will also come home and ask what to do about something when he's not sure.
He'd rather I have what I want. He's often been caught spending his own birthday or Christmas money on something for the kids.
He gives and gives, never asking for anything in return. He knows that a true gift has no price tag. No strings. No guilt offering ever required.
He forgives me when I'm cranky, cantankerous, and downright ugly.
He struggles alongside me. Not in front of me, not behind me. Beside me. Sometimes I may need him to step in front... but if he does, he defends me in a Christlike way. Through autism, through parenthood, sickness, lack of everything... he's right there. He doesn't slink away. We deal with it, whatever it is.
He doesn't embarrass me for fun. He does make fun of me when it's called for! I'd go nuts without a sense of humor.
I could go on and on. For these reasons and infinitely more than I can list, I'll be proud to have our boys be just like their Daddy. Yes, he makes mistakes. But he's the best father I could ask for to raise our children, and he's a way better husband than I could have dreamed.
This Father's Day, I thank the Lord for Eric... and for his Dad, too. One great Dad and believer begat another. I'm so thankful for the legacy that will surely pass to our boys and our girl. The kids may not say it, honey... but every time they pretend to put on your back brace, clunk around in your shoes, or repeat what you say, they're saying "I want to be just like you." Thank you both for doing your best to be godly men, fathers, and husbands so that we can be happy that the kids want to be just like you.
Have you ever packed a trip for five people with them all in the house? Gets interesting. The saving grace for me is my husband picking out his own clothes. A guy who helps. Who knew?
Single mamas, you have my utmost respect. Mamas whose husbands are out more than they're in-town, you do too. I do not know how you do it. I don't know how mine did, and there was just one of me!
When we're getting ready to go somewhere, I almost always do all the packing. Since back surgery, I do the loading into the van, too. But even without back surgery, there's always something Eric needs to be doing. Most guys, I'll bet, would do their own thing without a thought to their wives. My husband is the opposite. He wants to do for me, then do his own stuff. The only problem is that would leave him with no time to do the things he needs to do. Pretty cool, huh. It's my responsibility as his wife to NOT take advantage of this, since I don't want to be disrespectful.
No, I really don't. Not kidding.
I'm not into the man-bashing, war of the sexes mess so many women are. Yes, there are differences. Yes, at times they can be hilarious... but when hilarious turns to running over, no longer building up, and to downright disrespect and tearing down, the differences are no longer worthy of jocularity. There's a line.
At this point I have to admit I'm not into the "dad's right even if we go off a cliff" thing. Marriages only work when both parties are interested in the whole bible and all its truths and principles, and not just the "wives obey your husbands" part. And it is in there, sisters. I'm not throwin' you under the bus, girls. Hang with me.
Check out 1 Peter 3.
1Likewise, wives, be subject to your own husbands, so that even if some do not obey the word, they may be won without a word by the conduct of their wives, 2when they see your respectful and pure conduct. (ESV)This is one a lot of men sadly like to throw around, showing their ignorance of the rest of the passage. See, the respect we are to have for our husbands should flow from the desire to first obey God, and then respect the husband who loves us. This is where it gets easy for me. Not all the time, mind you. There are times I'm not in the mood to say "yes, dear". To tell the truth, there have been times when I wasn't ready to even just tap him on the shoulder and say, "Now honey..." when I didn't think he was in the right. All that would mean I'm perfect, and we've covered that. I'm as wretched as anyone else until you add Jesus to the equation.
The thing that makes it easier for me to respect my husband, to revere him, to obey (yes, even when I think I know better), is that my husband read the rest of the passage. Not only did he read it, he had one better. His Dad lived it. His father was and is a bible he could read by the way he treats his wife and children.
7Likewise, husbands, live with your wives in an understanding way, showing honor to the woman as the weaker vessel, since they are heirs with you of the grace of life, so that your prayers may not be hindered. 1 Peter 3:7 (ESV)Don't let the "weaker vessel" part throw you off. Ever asked a man to open a jar for you? Me too. But I also feel cared for and respected when men do little things like open the door for me. Call me what you will, I like being respected that way. My husband opens doors for me, but he also knows I can do his job. It's all about balance and respect. Once, a repairman came to fix my Nanny's stove. Granted, it was the mid to late fifties. She asked, when the job was done, what the problem had been, expecting a real explanation. Instead, she was told that the cord was bent, so the electricity couldn't get through. That is not respect, that's demeaning. But I digress.
I did not grow up with men who really knew what this passage meant. My childhood was filled with fear of men, as creatures who delight in exerting control. Men were scary folk to be feared who drank too much, threw things, hit people, used bad language, and were just generally hurtful beings. My father was one such man. Having demons from childhood he'd never worked through, such as an alcoholic, sociopathic father and a mother who liked to, we'll just say, "run around," he tried most of his life to fill the God-shaped hole in his heart with women, drugs, alcohol, work... anything that he thought would work. He sought hard most of his life to be loved. The problem with that was that people fail. Work stops. Chemicals eventually eat you alive. The only way he knew to deal with problems was with fists, alcohol, and screaming obscenities. I've heard stories. Not only from him, not only when he was sober, not only when he was the opposite. No one can ever know everything about someone, but I knew enough never to make him angry at all cost. And that knowledge did not come simply from stories.
So imagine my surprise when, after a lifetime of this mess and not giving the "father-figure" types in my life much of a chance, I meet Eric. Sweet, unassuming, loving Eric. No, I did not say perfect Eric. We both make mistakes. But of all the men roaming the earth, he knows how to be a man.
He may not work with his hands much, but you should hear him play trombone. You should hear the music he writes. You should go to a concert, marching contest, or drum corps show with him, then discuss it afterward. It's amazing what he remembers, what he heard.
No, he won't eat at Hooters with you. He won't go to a strip club, either. Don't ask. No, I did not make that rule. He made it for himself, long ago, because he was raised to respect women for real. Yes, I am very proud of this! It makes me stand a little straighter, feel a little better about what I see in the mirror, and know with more confidence that he really was at work when he doesn't get home until ten.
No, he doesn't drive a sportscar. He is proud to drive the truck he has, that belonged to my Dad (stepdad). He is absolutely cool with driving a minivan, complete with Tinkerbell steering wheel cover and floor mats.
He doesn't make getting things past me a pastime. He's not sneaky, he is truthful. He is home when he has free time, ready to do whatever it is that needs doing.
Yes, whatever needs doing includes diapers. Cloth diapers, and yes, he rinses them. Now that he's home on vacation, he learned to wash them "so that more than one of us is doing that" in his words. No, I didn't ask him to learn.
Until he had back surgery in January, for three kids, he's been the night captain. He proudly gets up, searches for binkies, got bottles, changes diapers, finds loveys, and rocks whoever back to sleep.
He listens, and in listening, wants to understand. He wants to understand why I feel the way I do about things. He wants to know what I think.
As I said earlier, he will be the first person to say I can do the job he does at school. He will also come home and ask what to do about something when he's not sure.
He'd rather I have what I want. He's often been caught spending his own birthday or Christmas money on something for the kids.
He gives and gives, never asking for anything in return. He knows that a true gift has no price tag. No strings. No guilt offering ever required.
He forgives me when I'm cranky, cantankerous, and downright ugly.
He struggles alongside me. Not in front of me, not behind me. Beside me. Sometimes I may need him to step in front... but if he does, he defends me in a Christlike way. Through autism, through parenthood, sickness, lack of everything... he's right there. He doesn't slink away. We deal with it, whatever it is.
He doesn't embarrass me for fun. He does make fun of me when it's called for! I'd go nuts without a sense of humor.
I could go on and on. For these reasons and infinitely more than I can list, I'll be proud to have our boys be just like their Daddy. Yes, he makes mistakes. But he's the best father I could ask for to raise our children, and he's a way better husband than I could have dreamed.
This Father's Day, I thank the Lord for Eric... and for his Dad, too. One great Dad and believer begat another. I'm so thankful for the legacy that will surely pass to our boys and our girl. The kids may not say it, honey... but every time they pretend to put on your back brace, clunk around in your shoes, or repeat what you say, they're saying "I want to be just like you." Thank you both for doing your best to be godly men, fathers, and husbands so that we can be happy that the kids want to be just like you.
I Want to Be Just Like You
-Phillips, Craig, and Dean
He climbs in my lap for a goodnight hug
He calls me Dad and I call him Bub
With his faded old pillow and a bear named Pooh
He snuggles up close and says, "I want to be like you"
I tuck him in bed and I kiss him goodnight
Trippin' over the toys as I turn out the light
And I whisper a prayer that someday he'll see
He's got a father in God 'cause he's seen Jesus in me
Lord, I want to be just like You
'Cause he wants to be just like me
I want to be a holy example
For his innocent eyes to see
Help me be a living Bible, Lord
That my little boy can read
I want to be just like You
'Cause he wants to be like me
Got to admit I've got so far to go
Make so many mistakes and I'm sure that You know
Sometimes it seems no matter how hard I try
With all the pressures in life I just can't get it all right
But I'm trying so hard to learn from the best
Being patient and kind, filled with Your tenderness
'Cause I know that he'll learn from the things that he sees
And the Jesus he finds will be the Jesus in me
Right now from where he stands I may seem mighty tall
But it's only 'cause I'm learning from the best Father of them all
Saturday, June 11, 2011
Tardy Tales of Day Camp 5
I confess... last night, by the time we got home, I just wanted to curl up in my husband's arms and catch up on some youtubed TV. We let the kids, who were equally as exhausted, pretty much choose whatever snacky for dinner because we'd had an awesome and somewhat late lunch. We watched Thomas, played VSmile (so funny... graphics are a step up from NES and the kids love it), and just enjoyed being home. We had plans for today, but it was one of those times when you have to decide between schedule at all cost, or sanity at all cost. Our choice is apparent, I betcha.
Yesterday as we started the 45 minute trek to Waco, I told Eric I wasn't sure this week was the right thing to do. He quickly reminded me that, although we don't hear one word from Ryan about camp (or much else for that matter), giving him the opportunity to be in a different environment and acclamate to a different schedule and kids with the training wheels of trained individuals is priceless. We knew he was not only safe, but the people who where there understood his issues (just understanding that, yes, he may be a beautiful, normal-looking child but he DOES have autism can be a challenge for some) and were able to work with him. Priceless. Truly priceless.
You know what else is priceless?
When we initially looked at this week, I was concerned about the amount of time to kill around Waco. We knew it would be time to eat when we got out, and that we had that covered all but two days, and those days we'd manage. But the time. Oh dear. Richie, Maelynn, Eric and I had to do something with that time! This is where I'm so glad I was raised the way I was. So grateful for my Mom and Nanny. We had a wonderful time with Richie and Mae! We walked around and explored Baylor, especially the bears. Richie loved that and the bookstore. We found a corner with a table where we could be out of the way, and played with puzzles, colored, and had a little snack. We found the bridge, walked it, fed ducks, and got to see three families of ducklings. We also got to experience geese invading once they figure out you have food!
What's the priceless part of that? Ducks, geese, river, squatting all gypsylike all over Waco? It was the chill-out, just go with it feel. It was being able to relax and see the look on Richie's face when the ducks ate his bread. It was seeing he and Maelynn free to be little kids for a while, not part of a family with autism. I was able to kneel down beside Richie and explain that if he is very still and quiet, the ducks will stay and eat our food. If we are gentle and calm, the ducks will feel safe and let us watch them. He was, and they did. He was amazing.
You know what else was amazing? I was able to think. I was able to remember. It was decadent to do things at the spur of the moment, no fumbling through the picture schedule icons, no "just keep moving", no "oh don't walk by that, or he won't stop stimming". We were able to sit by the river and watch the mallards take off, playing on the air just about two feet of the river, seemingly showing off how graceful and beautiful God made them. As we changed diapers in the van, stopped to read memorial plaques, and pointed out cool little things to Richie and Mae, I thought about lots of random things I loved about being with Nanny and Mom. I was able to let my mind wander to the hot summers I spent chasing Tupperware parties and deliveries with Nanny, stopping to see whatever we wanted, walk around wherever, and as she used to put it, "tromp around" in an odd shop or store that we happened to stumble upon. I remembered the times my Mom saved to take me to the Oklahoma City Zoo, and all the laughs we shared while we checked out the animals... and she always managed to have the fifty cents to stick in one of those rattly, old machines that molded a replica of whatever animal was in the exhibit close, and holding the hot plastic statue upside down till it cooled. I remembered how Mom and Dad always took us to the lake on Sunday afternoons, complete with burgers or hot dogs, swimming, and drying my hair by riding in the back of the truck on the way home.
I was able to give to Richie and Mae a little of what I loved about my childhood. I want to give these same things to Ryan, and I will continue to make attempts to do this. He's no less important. But in the life with autism, so many things go out the window or are adapted or put on hold to live appropriately. So many times the littles are kept from doing things we'd have done with them because it's hard for brother. We don't put it that way, but that's the truth. Hanging out by the river is dangerous for Ryan. He would have been all about trying to get in the water. When he realized he couldn't, he'd have been screaming and throwing down completely, beating his chest, legs, head... us... until we gave up and went back to the van. And the ducks? Psscht. They'd have been long gone.
It is more than my pleasure to care for, adapt for, and learn to love and get to know Ryan! We love that boy like crazy. But we have to be careful to make the littles important, too. They need their Mommy and Daddy to love them and teach them to be who God wants them to be just like Ryan. We'd never leave Ryan somewhere just to take the littles to enjoy something. So this fabulous by-product of Ryan's time at day camp was just that. Fabulous. We missed Ryan... especially on the bridge. We think he'd love it, and we'll have to try it someday. But these few hours each day this week were all about Richie and Maelynn, exploring the world with Mommy and Daddy.
Ryan? I walked up to get him from his last day at camp, bracing for the fight inside but smiling and waving at him. Ryan was on his tummy in a huge puddle, splashing a little and watching the ripples of the water. He was grinning. His two counselors, K and A, were with him. He didn't scream when he saw me! He did hop up and come to me... and I about jumped out of my skin! He said "I want to go to a restaurant" in his sweet, robotic, I-learned-this-phrase-from-an-app way, then went right back to the puddle. While I talked to K and A, he asked for the elevator a bunch, and tore away, with his hooded Nemo towel (complete with fin on top... so cute) streaming behind, to the building to see if he could get in. Joy. But he was happy, not screaming! Run from me? I can deal with that. He wasn't screaming at me! YAY!
As Ryan attempted a daring escape to a joy-ride (he thought) on the elevator, K and A told me all about how wonderful Ryan is... how cute and sweet he is... not once asking "how do you do this?" or "wow... is he like this all the time?" Nope. All about how neat he is, at the same time as reporting to me ways they've found to help him control his stimming. I thanked them, they thanked us for the time they had with Ryan, and said they'd miss him.
Best part... I asked Ryan to hold my hand (after chasing him with the help of the child of one of the folks in charge) as we walked back to the van. He didn't fight or worm away. He slipped his pruny, cold, half-wet, soft, child's hand into mine, and we strolled back to the van. We even took a different route and talked about the squirrels on campus (who seemed to be having a convention on the steps of one of the buildings). He told me about not touching the big red button. He was happy.
So yep, I'm sure now that we did the right thing with this camp. It didn't happen the way I thought. I'll never know, likely, what Ryan's thoughts were on the camp itself. But God showed again that, as my precious inlaw-parents like to say, "heaven rules". We were concerned with the cost of the week... simply the time and money... but knew that it was needed. Again, God gives us what we need... what He knows we need... and that is always better than what we dreamed, even when we dream our best. I don't understand why, I don't understand autism... I don't know why I don't understand autism! I don't know why bad stuff happens. I only know that God is God, and I trust Him. I trust Him because He has always brought me through. He has always been my rock, my shelter, my best friend. My certainness in uncertainty. My sanity in too much crazy. I don't make this stuff up... it's for real. The struggles are real, and the only real answers and comfort I find are in Him.
God is God by Steven Curtis Chapman
Yesterday as we started the 45 minute trek to Waco, I told Eric I wasn't sure this week was the right thing to do. He quickly reminded me that, although we don't hear one word from Ryan about camp (or much else for that matter), giving him the opportunity to be in a different environment and acclamate to a different schedule and kids with the training wheels of trained individuals is priceless. We knew he was not only safe, but the people who where there understood his issues (just understanding that, yes, he may be a beautiful, normal-looking child but he DOES have autism can be a challenge for some) and were able to work with him. Priceless. Truly priceless.
You know what else is priceless?
When we initially looked at this week, I was concerned about the amount of time to kill around Waco. We knew it would be time to eat when we got out, and that we had that covered all but two days, and those days we'd manage. But the time. Oh dear. Richie, Maelynn, Eric and I had to do something with that time! This is where I'm so glad I was raised the way I was. So grateful for my Mom and Nanny. We had a wonderful time with Richie and Mae! We walked around and explored Baylor, especially the bears. Richie loved that and the bookstore. We found a corner with a table where we could be out of the way, and played with puzzles, colored, and had a little snack. We found the bridge, walked it, fed ducks, and got to see three families of ducklings. We also got to experience geese invading once they figure out you have food!
What's the priceless part of that? Ducks, geese, river, squatting all gypsylike all over Waco? It was the chill-out, just go with it feel. It was being able to relax and see the look on Richie's face when the ducks ate his bread. It was seeing he and Maelynn free to be little kids for a while, not part of a family with autism. I was able to kneel down beside Richie and explain that if he is very still and quiet, the ducks will stay and eat our food. If we are gentle and calm, the ducks will feel safe and let us watch them. He was, and they did. He was amazing.
You know what else was amazing? I was able to think. I was able to remember. It was decadent to do things at the spur of the moment, no fumbling through the picture schedule icons, no "just keep moving", no "oh don't walk by that, or he won't stop stimming". We were able to sit by the river and watch the mallards take off, playing on the air just about two feet of the river, seemingly showing off how graceful and beautiful God made them. As we changed diapers in the van, stopped to read memorial plaques, and pointed out cool little things to Richie and Mae, I thought about lots of random things I loved about being with Nanny and Mom. I was able to let my mind wander to the hot summers I spent chasing Tupperware parties and deliveries with Nanny, stopping to see whatever we wanted, walk around wherever, and as she used to put it, "tromp around" in an odd shop or store that we happened to stumble upon. I remembered the times my Mom saved to take me to the Oklahoma City Zoo, and all the laughs we shared while we checked out the animals... and she always managed to have the fifty cents to stick in one of those rattly, old machines that molded a replica of whatever animal was in the exhibit close, and holding the hot plastic statue upside down till it cooled. I remembered how Mom and Dad always took us to the lake on Sunday afternoons, complete with burgers or hot dogs, swimming, and drying my hair by riding in the back of the truck on the way home.
I was able to give to Richie and Mae a little of what I loved about my childhood. I want to give these same things to Ryan, and I will continue to make attempts to do this. He's no less important. But in the life with autism, so many things go out the window or are adapted or put on hold to live appropriately. So many times the littles are kept from doing things we'd have done with them because it's hard for brother. We don't put it that way, but that's the truth. Hanging out by the river is dangerous for Ryan. He would have been all about trying to get in the water. When he realized he couldn't, he'd have been screaming and throwing down completely, beating his chest, legs, head... us... until we gave up and went back to the van. And the ducks? Psscht. They'd have been long gone.
It is more than my pleasure to care for, adapt for, and learn to love and get to know Ryan! We love that boy like crazy. But we have to be careful to make the littles important, too. They need their Mommy and Daddy to love them and teach them to be who God wants them to be just like Ryan. We'd never leave Ryan somewhere just to take the littles to enjoy something. So this fabulous by-product of Ryan's time at day camp was just that. Fabulous. We missed Ryan... especially on the bridge. We think he'd love it, and we'll have to try it someday. But these few hours each day this week were all about Richie and Maelynn, exploring the world with Mommy and Daddy.
Ryan? I walked up to get him from his last day at camp, bracing for the fight inside but smiling and waving at him. Ryan was on his tummy in a huge puddle, splashing a little and watching the ripples of the water. He was grinning. His two counselors, K and A, were with him. He didn't scream when he saw me! He did hop up and come to me... and I about jumped out of my skin! He said "I want to go to a restaurant" in his sweet, robotic, I-learned-this-phrase-from-an-app way, then went right back to the puddle. While I talked to K and A, he asked for the elevator a bunch, and tore away, with his hooded Nemo towel (complete with fin on top... so cute) streaming behind, to the building to see if he could get in. Joy. But he was happy, not screaming! Run from me? I can deal with that. He wasn't screaming at me! YAY!
As Ryan attempted a daring escape to a joy-ride (he thought) on the elevator, K and A told me all about how wonderful Ryan is... how cute and sweet he is... not once asking "how do you do this?" or "wow... is he like this all the time?" Nope. All about how neat he is, at the same time as reporting to me ways they've found to help him control his stimming. I thanked them, they thanked us for the time they had with Ryan, and said they'd miss him.
Best part... I asked Ryan to hold my hand (after chasing him with the help of the child of one of the folks in charge) as we walked back to the van. He didn't fight or worm away. He slipped his pruny, cold, half-wet, soft, child's hand into mine, and we strolled back to the van. We even took a different route and talked about the squirrels on campus (who seemed to be having a convention on the steps of one of the buildings). He told me about not touching the big red button. He was happy.
So yep, I'm sure now that we did the right thing with this camp. It didn't happen the way I thought. I'll never know, likely, what Ryan's thoughts were on the camp itself. But God showed again that, as my precious inlaw-parents like to say, "heaven rules". We were concerned with the cost of the week... simply the time and money... but knew that it was needed. Again, God gives us what we need... what He knows we need... and that is always better than what we dreamed, even when we dream our best. I don't understand why, I don't understand autism... I don't know why I don't understand autism! I don't know why bad stuff happens. I only know that God is God, and I trust Him. I trust Him because He has always brought me through. He has always been my rock, my shelter, my best friend. My certainness in uncertainty. My sanity in too much crazy. I don't make this stuff up... it's for real. The struggles are real, and the only real answers and comfort I find are in Him.
God is God by Steven Curtis Chapman
And the pain falls like a curtain
On the things I once called certain
And I have to say the words I fear the most
I just don’t know
And the questions without answers
Come and paralyze the dancer
So I stand here on the stage afraid to move
Afraid to fall, oh, but fall I must
On this truth that my life has been formed from the dust
[Chorus]
God is God and I am not
I can only see a part of the picture He’s painting
God is God and I am man
So I’ll never understand it all
For only God is God
And the sky begins to thunder
And I’m filled with awe and wonder
‘Till the only burning question that remains
Is who am I?
Can I form a single mountain
Take the stars in hand and count them
Can I even take a breath without God giving it to me
He is first and last before all that has been
Beyond all that will pass
[Chorus]
God is God and I am not
I can only see a part of the picture He’s painting
God is God and I am man
So I’ll never understand it all
For only God is God
Oh, how great are the riches of His wisdom and knowledge
How unsearchable for to Him and through Him and from Him are all things
So let us worship before the throne
Of the One who is worthy of worship alone
[Chorus]
God is God and I am not
I can only see a part of the picture He’s painting
God is God and I am man
So I’ll never understand it all
For only God is God
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