"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.
Monday, August 29, 2011
Tuesday, August 23, 2011
Ah, Providence...
Before I dig into this precious account of the time we spent getting ready for school yesterday and this year, I have to say I'm amazed, again, at God's providence. Completely floored, overwhelmed, and in utter awe of God's timing, mercies, you name it. He knows us, our needs, better than we could have imagined. This comes from the heart of a mother who still puts a baby gate up to keep her son in his room at night, keeps the monitor on, and has agonized over whether or not to homeschool, try kindergarten, try something else... whatever else... to make sure Ryan gets what he needs to be who he should be.
About mid-week last week, I get an email from the church we're now attending. They needed to know something... can't remember what... to make sure they had the correct room setup for beginning CE (Christian Education... like Sunday school) this past Sunday. We called about visiting earlier this summer. By "called about visiting" I mean we called with intent to talk to someone who would know whether or not we'd be accepted into the church with all our challenges. Let's face it... when one person in the family has autism, it seems the rest of the family does too, at least when all the kids are young enough that we all do things together. We called not to be ugly, not to be snarky, but to truly ask if this might be a place we'd be able to grow... and Ryan would be able to become part, as well as Richie and Maelynn. We want our family to be part of this kind of church for several reasons, there aren't a ton of them in our area, and we felt kinda drawn to this one. After we've made the decision to jump in and start going there, we find out that Ryan's CE teachers are trained in special education and work daily with autistic kids at one of the school districts nearby. We did not know this in the beginning!!! The decision to attend this church was made on theology, and to be perfectly honest, personal preference. It turned out to be an example of God's providence.
So the day before the first day of school was almost as big of a "new stuff" day as school, and although there was some screaming that I heard from our adult CE class, the teachers are pros. He was a happy little dude when we picked him up for the service. He participated in coloring, story, everything. He did get a bit antsy toward the end, so one of the teachers took him with them to run a quick errand to another room. No biggie. He did pretty well through the service. We sit in the back with several other families with small kids, and all of us overlook the wiggles and noise. It's just lovely.
After church, we got a bite to eat and needed a trip to Target. Just a quick one. Ryan was not amused, but we made it out without any major screaming fits. I love Target, but my son does not. That's probably better for our budget, anyway! By the time we were through the checkout, Ryan had begun to scream for his new teacher. Cool! He hadn't met her, but I'd talked her up a bit. Okay, I hawked her like a carney. But he was asking for her by name, knowing we were on our way to meet her and see the classroom. Big step!
We drove the 45 minutes home. Since we were still doing well on time, I decided to stop and pick up his teacher for the last three years' thank you gift, since (in true Crystal fashion) I had forgotten it. And it was late. Yeah, that's how I roll. Good thing she loves us.
By the time we made it to meet the teacher, the crowd was thinning and Ryan was able to check out the classroom. It was very organized, colorful but not obnoxiously so, and he even got to see his fellow ASD kiddo, M, who has been in PPCD with him for a couple of years. Not that they spoke to each other, but y'know. They knew. After completing the checklist of things to do, unloading his school supplies, finding his desk, locating his cubby, and visiting with his new teacher and one of our teacher friends we were on our way home. I was thinking we had a pretty good handle on this, but was still nervous. He fiddled with the pencil sharpener like crazy. I could just see his poor teacher scraping him off the ceiling when he was told to sit down.
Trying to be positive, I kinda barreled through the evening, just getting things together and making sure things would be as streamlined as they could. The next morning, he did eat, and no meltdowns. Yay! Then it was time to go. We'd left his backpack at school as requested, but he still needed his lunch. So he and his Thomas-shaped lunchbox trotted out to the van with the littles behind him. As we got in, Eric snapped a picture with his phone. Yeah, I was trying so hard to not think about it all that I didn't get any pictures. Ugh. Bad Mommy!
Once in the van, I promised he could listen to his current favorite song. If you know us in real life you'll chuckle... it's the Cadets CD from this summer, track #6, Strike Up the Band. It has the most awesome roll off... anyway, we're rocking to "the drums" as Ryan calls it, over and over, and something about it all hits. And I'm crying. Maybe listening to drum corps wasn't the brightest idea for the ex-band director mama who misses teaching marching band. Ah well, he loves it!
I know it's not unusual for mothers to cry the first day of kindergarten. But Ryan has been in PPCD for three years so I'm not a rookie. I had to leave my baby for the full day when he was three. It's in the same building, on the same hall. We have friends who are teachers on that hall and know Ryan. Four or five doors down apparently incites tears in me! We drove through the traffic tree... completely empty except for us... and thankfully it didn't hit me until later that most people walk their kids in for the first day. Not us. Routine is something to be adhered to from day one. It's best for him, and by extension, everyone else. The best part about it that particular morning was that no one but an aid was around to see me blubbering.
When it was our turn for the aid to open the van door and help Ryan to the school, the waterworks got worse. He was completely comfortable and seemed happy and calm! I, on the other hand, at 33 years of age, was a wreck. The aid said "give Mommy a hug" and he leaned in and let me hug him in his little Ryan way. I tried to tell him through the tears to be a good boy, mind his teacher, all that mess. He stood up from that hug, looked me IN THE EYE, and did something I'll never forget.
He threw his arms around my neck and gave me the biggest Ryan hug ever.
Throughout the day, I heard from a couple of different people (including his PPCD teacher, who's like a second mother for him) who had noticed Ryan, and they all said the same thing. He was having a great day!
Of all the therapies I worry that we don't/can't provide, one thing we have for our super little man is love. Not just ours, but the people who are in the school here really do care about our precious one. He made it all day, not one phone call, and I had secretly expected to have to pick him up way early.
Just like so many things of late, this doesn't tie up in a pretty little bow. There will be over 170 more days of school to navigate. But for this day, we celebrated. We ordered a pizza (which we hardly ever do), and we cried more tears of joy and pride and gratitude, still reeling in the mercies, blessings, and providence of God. No, it will not always tie up in a neat bow... but I choose to hold fast to the knowledge that God, having made even our little family for His own glory, knows how to take care of us. That choice has never let me down, and I believe it never will! No, I cannot explain it all. I cannot fully answer every "why" and "what if", I cannot explain why bad things happen... why autism happens. But you ask me how I know He lives? He lives within my heart. He chisels the hard places from my heart, smooths the rough spots, toughens the weak ones. He gave me three beautiful children, and He gave me the moment yesterday afternoon when a sweaty, backpack-clad six year old came out with his aid, climbed into the van and uttered the most precious words I'd heard in months...
"Hi Mommy! Do you like the school every day?" *stim, stim* (Ryan for "I LOVE school!)
All spoken while grinning ear to ear.
THANKS BE TO GOD!!!
In Christ Alone
by Stuart Townsend and Keith Getty
In Christ alone my hope is found,
He is my light, my strength, my song;
this Cornerstone, this solid Ground,
firm through the fiercest drought and storm.
What heights of love, what depths of peace,
when fears are stilled, when strivings cease!
My Comforter, my All in All,
here in the love of Christ I stand.
In Christ alone! who took on flesh
Fulness of God in helpless babe!
This gift of love and righteousness
Scorned by the ones he came to save:
Till on that cross as Jesus died,
The wrath of God was satisfied -
For every sin on Him was laid;
Here in the death of Christ I live.
There in the ground His body lay
Light of the world by darkness slain:
Then bursting forth in glorious Day
Up from the grave he rose again!
And as He stands in victory
Sin's curse has lost its grip on me,
For I am His and He is mine -
Bought with the precious blood of Christ.
No guilt in life, no fear in death,
This is the power of Christ in me;
From life's first cry to final breath.
Jesus commands my destiny.
No power of hell, no scheme of man,
Can ever pluck me from His hand;
Till He returns or calls me home,
Here in the power of Christ I stand.
About mid-week last week, I get an email from the church we're now attending. They needed to know something... can't remember what... to make sure they had the correct room setup for beginning CE (Christian Education... like Sunday school) this past Sunday. We called about visiting earlier this summer. By "called about visiting" I mean we called with intent to talk to someone who would know whether or not we'd be accepted into the church with all our challenges. Let's face it... when one person in the family has autism, it seems the rest of the family does too, at least when all the kids are young enough that we all do things together. We called not to be ugly, not to be snarky, but to truly ask if this might be a place we'd be able to grow... and Ryan would be able to become part, as well as Richie and Maelynn. We want our family to be part of this kind of church for several reasons, there aren't a ton of them in our area, and we felt kinda drawn to this one. After we've made the decision to jump in and start going there, we find out that Ryan's CE teachers are trained in special education and work daily with autistic kids at one of the school districts nearby. We did not know this in the beginning!!! The decision to attend this church was made on theology, and to be perfectly honest, personal preference. It turned out to be an example of God's providence.
So the day before the first day of school was almost as big of a "new stuff" day as school, and although there was some screaming that I heard from our adult CE class, the teachers are pros. He was a happy little dude when we picked him up for the service. He participated in coloring, story, everything. He did get a bit antsy toward the end, so one of the teachers took him with them to run a quick errand to another room. No biggie. He did pretty well through the service. We sit in the back with several other families with small kids, and all of us overlook the wiggles and noise. It's just lovely.
After church, we got a bite to eat and needed a trip to Target. Just a quick one. Ryan was not amused, but we made it out without any major screaming fits. I love Target, but my son does not. That's probably better for our budget, anyway! By the time we were through the checkout, Ryan had begun to scream for his new teacher. Cool! He hadn't met her, but I'd talked her up a bit. Okay, I hawked her like a carney. But he was asking for her by name, knowing we were on our way to meet her and see the classroom. Big step!
We drove the 45 minutes home. Since we were still doing well on time, I decided to stop and pick up his teacher for the last three years' thank you gift, since (in true Crystal fashion) I had forgotten it. And it was late. Yeah, that's how I roll. Good thing she loves us.
By the time we made it to meet the teacher, the crowd was thinning and Ryan was able to check out the classroom. It was very organized, colorful but not obnoxiously so, and he even got to see his fellow ASD kiddo, M, who has been in PPCD with him for a couple of years. Not that they spoke to each other, but y'know. They knew. After completing the checklist of things to do, unloading his school supplies, finding his desk, locating his cubby, and visiting with his new teacher and one of our teacher friends we were on our way home. I was thinking we had a pretty good handle on this, but was still nervous. He fiddled with the pencil sharpener like crazy. I could just see his poor teacher scraping him off the ceiling when he was told to sit down.
Trying to be positive, I kinda barreled through the evening, just getting things together and making sure things would be as streamlined as they could. The next morning, he did eat, and no meltdowns. Yay! Then it was time to go. We'd left his backpack at school as requested, but he still needed his lunch. So he and his Thomas-shaped lunchbox trotted out to the van with the littles behind him. As we got in, Eric snapped a picture with his phone. Yeah, I was trying so hard to not think about it all that I didn't get any pictures. Ugh. Bad Mommy!
Once in the van, I promised he could listen to his current favorite song. If you know us in real life you'll chuckle... it's the Cadets CD from this summer, track #6, Strike Up the Band. It has the most awesome roll off... anyway, we're rocking to "the drums" as Ryan calls it, over and over, and something about it all hits. And I'm crying. Maybe listening to drum corps wasn't the brightest idea for the ex-band director mama who misses teaching marching band. Ah well, he loves it!
I know it's not unusual for mothers to cry the first day of kindergarten. But Ryan has been in PPCD for three years so I'm not a rookie. I had to leave my baby for the full day when he was three. It's in the same building, on the same hall. We have friends who are teachers on that hall and know Ryan. Four or five doors down apparently incites tears in me! We drove through the traffic tree... completely empty except for us... and thankfully it didn't hit me until later that most people walk their kids in for the first day. Not us. Routine is something to be adhered to from day one. It's best for him, and by extension, everyone else. The best part about it that particular morning was that no one but an aid was around to see me blubbering.
When it was our turn for the aid to open the van door and help Ryan to the school, the waterworks got worse. He was completely comfortable and seemed happy and calm! I, on the other hand, at 33 years of age, was a wreck. The aid said "give Mommy a hug" and he leaned in and let me hug him in his little Ryan way. I tried to tell him through the tears to be a good boy, mind his teacher, all that mess. He stood up from that hug, looked me IN THE EYE, and did something I'll never forget.
He threw his arms around my neck and gave me the biggest Ryan hug ever.
Throughout the day, I heard from a couple of different people (including his PPCD teacher, who's like a second mother for him) who had noticed Ryan, and they all said the same thing. He was having a great day!
Of all the therapies I worry that we don't/can't provide, one thing we have for our super little man is love. Not just ours, but the people who are in the school here really do care about our precious one. He made it all day, not one phone call, and I had secretly expected to have to pick him up way early.
Just like so many things of late, this doesn't tie up in a pretty little bow. There will be over 170 more days of school to navigate. But for this day, we celebrated. We ordered a pizza (which we hardly ever do), and we cried more tears of joy and pride and gratitude, still reeling in the mercies, blessings, and providence of God. No, it will not always tie up in a neat bow... but I choose to hold fast to the knowledge that God, having made even our little family for His own glory, knows how to take care of us. That choice has never let me down, and I believe it never will! No, I cannot explain it all. I cannot fully answer every "why" and "what if", I cannot explain why bad things happen... why autism happens. But you ask me how I know He lives? He lives within my heart. He chisels the hard places from my heart, smooths the rough spots, toughens the weak ones. He gave me three beautiful children, and He gave me the moment yesterday afternoon when a sweaty, backpack-clad six year old came out with his aid, climbed into the van and uttered the most precious words I'd heard in months...
"Hi Mommy! Do you like the school every day?" *stim, stim* (Ryan for "I LOVE school!)
All spoken while grinning ear to ear.
THANKS BE TO GOD!!!
In Christ Alone
by Stuart Townsend and Keith Getty
In Christ alone my hope is found,
He is my light, my strength, my song;
this Cornerstone, this solid Ground,
firm through the fiercest drought and storm.
What heights of love, what depths of peace,
when fears are stilled, when strivings cease!
My Comforter, my All in All,
here in the love of Christ I stand.
In Christ alone! who took on flesh
Fulness of God in helpless babe!
This gift of love and righteousness
Scorned by the ones he came to save:
Till on that cross as Jesus died,
The wrath of God was satisfied -
For every sin on Him was laid;
Here in the death of Christ I live.
There in the ground His body lay
Light of the world by darkness slain:
Then bursting forth in glorious Day
Up from the grave he rose again!
And as He stands in victory
Sin's curse has lost its grip on me,
For I am His and He is mine -
Bought with the precious blood of Christ.
No guilt in life, no fear in death,
This is the power of Christ in me;
From life's first cry to final breath.
Jesus commands my destiny.
No power of hell, no scheme of man,
Can ever pluck me from His hand;
Till He returns or calls me home,
Here in the power of Christ I stand.
Thursday, August 18, 2011
Burgers, anyone?
Ryan, during breakfast, in his precious robotic voice: "I want a burger."
Mommy: "Honey, you have to eat your jelly toast."
Ryan: "First jelly toast, then burger." He tries this a few times to no avail.
Mommy: "No, sweetie. First toast, then get dressed, then Thomas."
Ryan: "First toast then BURGEEEEERRRRRR!!!" *Scream, scream," BURGEEERRRR!"
Thus began the morning. He did relent and eat his toast. After breakfast, we were all in the living room hangin' with Thomas, James, Percy, Edward... you get it.
Ryan: "I want a burger."
Mommy: "We can have a burger for dinner tonight, ok?"
Ryan: "I want burger!"
Mommy: "We can have a burger for dinner tonight, sweetie. I know Daddy will love that."
It wasn't on the menu... the prepared-a-week-in-advance, squeeze every meal we can out of one pound of cheap hamburger menu I'd prepared. But he wanted it BAD, and I have a couple extra pounds in the freezer. And this time, he was asking nicely. back to your regularly scheduled whatever this is...
Ryan: "Ryan caahave burger for dinner."
Mommy: "Yes, baby. Ryan can have a burger for dinner."
Ryan: "I WANT BURGER!"
This is the first meltdown of the day. I have no idea if he understands what I'm saying and just wants it now, or if he is just struggling to comprehend, or a combination. Either way, the screaming, kicking, hitting the furniture has begun. Fast forward a bit, and it's lunchtime.
Mommy: "Boys, come to the table! Time to eat your sandwiches!"
The boys, after a couple reminders, come padding, gangling, hopping, yet meandering into the kitchen.
Ryan, upon seeing his dinosaur shaped grilled cheese: "I want burger!"
Mommy: "I know, sweetie. I don't have one ready now. We'll have burgers for dinner."
Ryan screamed and thrashed around in his chair, beat the table, beat his chest, and it didn't matter what I said. He had to go to the living room and calm down at my request. When he came back, he ate half of his sandwich and asked to go take his nap. Rare, but when you've been exerting that much energy and only God knows how much mental/emotional energy, you're tapped. He and brother go to their room to take their naps. In their room...
Mommy: Take off your glasses and shoes and climb into bed, Ryan. Kiss Richie, already in bed.
Ryan: "After naps you can have the iPad."
Mommy: "Yes, baby. Absolutely. You can have the iPad after naps. I love you both... get some rest, little buddies."
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The rest of the afternoon was much the same. Mostly about burgers, some little fits centering around toys, giving up iPad when the timer went off, sister gettin' all up in his business. But he was his parents' child, and totally wanted that burger. He even goes as far as to put his hand on my shoulder and say "That's a good ask!" when he asks for something, thinking (I think) that his reminder will surely snap me back into my mind, giving him what he requested immediately.
Maybe not.
Heavy on the "not." But it's so cute. I love it. The screaming, physical outbursts, and just plain demanding isn't cute. Far from it. All day long we watch Ryan so disturbed over something we've simply said "later" about, or something he just can't have right now. The other day's two and a half hour meltdown over milk, today's burger mess... they frustrate me beyond compare. What do I do, just give in to calm him down?! I know he's smart. I know he'll see a hole in the fence and exploit it.
I can't be afraid of his fits. I can't be afraid of him. I can't get mad. I can't show frustration. When I do, it gets worse. His fear feeds on mine, and it spirals out of control. So I swallow, go on auto, and keep repeating things like "first this, then this" and "you're ok" and "if no this then no this". But I get so sick of the sound of my voice. There are times I think if I hear myself say the same thing one more time I'm gonna puke, pass out, tear out my hair, or all three. Run screaming through the neighborhood, maybe? Go back to bed, nope. I've done that before when Eric got home, though... just long enough to regroup and find my brain so I can cook.
Watching your child suffer at all is awful. All of us as parents will, unfortunately, see some kind of suffering in our children's lives. Remember that horrible face your child makes as you help the nurse hold him/her to give a shot? That "what the heck is going on and why aren't you doing anything" look? There's a bit of that in every meltdown. You can tell that part of him wonders why I'm not fixing it. But I know from experience that all I can do is wait and keep him safe. He's not a bad kid. He is a good kid with autism.
Funny, saying that he has autism... classic... severe... autism still rings in my ears and makes my stomach ache. Still. I try not to dwell on what ifs, but how can you not think about it every once in a while? Here we are sending this precious being into a classroom with about 25 other kids... one teacher (who we really believe to be the best fit possible)... blllaaaah. I do this every day. I do it because he's my sweet Ryan... he's my first baby. He's the one I talked to, Eric read stories to before he was born. He's the one who was tucked snugly in my tummy as I stood in his bedroom in our house in Fort Worth, gazing into the empty crib and trying to wrap my mind around parenthood.
But he's also the one who wasn't talking at 2, then 2 1/2, then 3... the one who couldn't make eye contact such a short time ago... the one who still watches Elmo and loves every minute... the one who must complete every task he starts... the one who perseverates with the persistency of super glue.
I used to pray that God would take this away. Every day, I prayed it wouldn't be autism. I begged. I pleaded. Then came the day when we heard it in the meeting at school and both of us cried, and that was just "it's probably autism". The diagnositican was (and still is) a good friend of ours, and I can see her face and hear the words to this day. Then there was still a chance, I felt... a smidge of a chance there was something missed, something added that shouldn't have been, and it might be wrong. This year I just knew when he was re-evaluated he'd have improved so much there would be a change, and there was.
This time they were sure. Severely autistic.
So what do you do with this? Some have watched and think that it can't be as hard as we say... but it is. We love our kids, all of them. Any issues any of them have we're in for the long haul. The everyday gets rough. It gets hard. It drags every last ounce of energy and sucks the life out of me at times. The single thing that keeps our hearts plugging along is our faith. "But God didn't take away autism," you might think. No, He didn't. Could He? Absolutely. But I choose to believe every day when I wake up that He knows best. I will be faithful to love my boy. I will do my best to do what I can and push the limits of what I think I can do. On the days I can't... on the days I don't have it, nothing makes sense, and it all seems too hard, and I don't have the heart to even look up, He carries me. He holds me.
Life doesn't wrap up in a nice, neat little bow all the time. It's not fair. It's not easy. But it is worth it. In the middle of the autism mess, we're given things to make us smile. My kids laughing... the rare moments they're playing together, or even alongside... are among the most amazing things in the world. I'm scared of a lot of things for my Ryan. Among the life-altering lessons I've learned while Ryan's blessed our lives... humility. Too often it's my pride... my way of thinking, predisposed "what I deserve" or "the way it should be"... that trip me. Leave me in tears, wondering how I'm going to keep doing this. Yes, somewhere between my kids and scripture I've seen more of how multi-faceted and sneaky pride is, and how it wrecks things without me even knowing it.
So as I'm cleaning my potty training three year old's puddles from the carpet as Ryan is asking over and over and over and over for milk/iPad/black cookies/whatever and Mae is trying to crawl up my back, I'm gonna try and remember... again... that it's these things that make up life. That I make mistakes and am difficult at times, too, even though my husband doesn't complain. But really, what matters is hanging with each other. Enjoying what we can, working through the rest. It's all about learning to love each other more than ourselves. To love as Christ loves us.
By the way... I decided, after a day like that, to go ahead and have burgers when I was going to serve leftovers. When Ryan saw his burger, guess what? He refused it and started screaming for the VSmile Thomas game. Never did eat, and it's still on the table. No, he didn't play VSmile... and yes, it was noisy. Oh well.
Mommy: "Honey, you have to eat your jelly toast."
Ryan: "First jelly toast, then burger." He tries this a few times to no avail.
Mommy: "No, sweetie. First toast, then get dressed, then Thomas."
Ryan: "First toast then BURGEEEEERRRRRR!!!" *Scream, scream," BURGEEERRRR!"
Thus began the morning. He did relent and eat his toast. After breakfast, we were all in the living room hangin' with Thomas, James, Percy, Edward... you get it.
Ryan: "I want a burger."
Mommy: "We can have a burger for dinner tonight, ok?"
Ryan: "I want burger!"
Mommy: "We can have a burger for dinner tonight, sweetie. I know Daddy will love that."
It wasn't on the menu... the prepared-a-week-in-advance, squeeze every meal we can out of one pound of cheap hamburger menu I'd prepared. But he wanted it BAD, and I have a couple extra pounds in the freezer. And this time, he was asking nicely. back to your regularly scheduled whatever this is...
Ryan: "Ryan caahave burger for dinner."
Mommy: "Yes, baby. Ryan can have a burger for dinner."
Ryan: "I WANT BURGER!"
This is the first meltdown of the day. I have no idea if he understands what I'm saying and just wants it now, or if he is just struggling to comprehend, or a combination. Either way, the screaming, kicking, hitting the furniture has begun. Fast forward a bit, and it's lunchtime.
Mommy: "Boys, come to the table! Time to eat your sandwiches!"
The boys, after a couple reminders, come padding, gangling, hopping, yet meandering into the kitchen.
Ryan, upon seeing his dinosaur shaped grilled cheese: "I want burger!"
Mommy: "I know, sweetie. I don't have one ready now. We'll have burgers for dinner."
Ryan screamed and thrashed around in his chair, beat the table, beat his chest, and it didn't matter what I said. He had to go to the living room and calm down at my request. When he came back, he ate half of his sandwich and asked to go take his nap. Rare, but when you've been exerting that much energy and only God knows how much mental/emotional energy, you're tapped. He and brother go to their room to take their naps. In their room...
Mommy: Take off your glasses and shoes and climb into bed, Ryan. Kiss Richie, already in bed.
Ryan: "After naps you can have the iPad."
Mommy: "Yes, baby. Absolutely. You can have the iPad after naps. I love you both... get some rest, little buddies."
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The rest of the afternoon was much the same. Mostly about burgers, some little fits centering around toys, giving up iPad when the timer went off, sister gettin' all up in his business. But he was his parents' child, and totally wanted that burger. He even goes as far as to put his hand on my shoulder and say "That's a good ask!" when he asks for something, thinking (I think) that his reminder will surely snap me back into my mind, giving him what he requested immediately.
Maybe not.
Heavy on the "not." But it's so cute. I love it. The screaming, physical outbursts, and just plain demanding isn't cute. Far from it. All day long we watch Ryan so disturbed over something we've simply said "later" about, or something he just can't have right now. The other day's two and a half hour meltdown over milk, today's burger mess... they frustrate me beyond compare. What do I do, just give in to calm him down?! I know he's smart. I know he'll see a hole in the fence and exploit it.
I can't be afraid of his fits. I can't be afraid of him. I can't get mad. I can't show frustration. When I do, it gets worse. His fear feeds on mine, and it spirals out of control. So I swallow, go on auto, and keep repeating things like "first this, then this" and "you're ok" and "if no this then no this". But I get so sick of the sound of my voice. There are times I think if I hear myself say the same thing one more time I'm gonna puke, pass out, tear out my hair, or all three. Run screaming through the neighborhood, maybe? Go back to bed, nope. I've done that before when Eric got home, though... just long enough to regroup and find my brain so I can cook.
Watching your child suffer at all is awful. All of us as parents will, unfortunately, see some kind of suffering in our children's lives. Remember that horrible face your child makes as you help the nurse hold him/her to give a shot? That "what the heck is going on and why aren't you doing anything" look? There's a bit of that in every meltdown. You can tell that part of him wonders why I'm not fixing it. But I know from experience that all I can do is wait and keep him safe. He's not a bad kid. He is a good kid with autism.
Funny, saying that he has autism... classic... severe... autism still rings in my ears and makes my stomach ache. Still. I try not to dwell on what ifs, but how can you not think about it every once in a while? Here we are sending this precious being into a classroom with about 25 other kids... one teacher (who we really believe to be the best fit possible)... blllaaaah. I do this every day. I do it because he's my sweet Ryan... he's my first baby. He's the one I talked to, Eric read stories to before he was born. He's the one who was tucked snugly in my tummy as I stood in his bedroom in our house in Fort Worth, gazing into the empty crib and trying to wrap my mind around parenthood.
But he's also the one who wasn't talking at 2, then 2 1/2, then 3... the one who couldn't make eye contact such a short time ago... the one who still watches Elmo and loves every minute... the one who must complete every task he starts... the one who perseverates with the persistency of super glue.
I used to pray that God would take this away. Every day, I prayed it wouldn't be autism. I begged. I pleaded. Then came the day when we heard it in the meeting at school and both of us cried, and that was just "it's probably autism". The diagnositican was (and still is) a good friend of ours, and I can see her face and hear the words to this day. Then there was still a chance, I felt... a smidge of a chance there was something missed, something added that shouldn't have been, and it might be wrong. This year I just knew when he was re-evaluated he'd have improved so much there would be a change, and there was.
This time they were sure. Severely autistic.
So what do you do with this? Some have watched and think that it can't be as hard as we say... but it is. We love our kids, all of them. Any issues any of them have we're in for the long haul. The everyday gets rough. It gets hard. It drags every last ounce of energy and sucks the life out of me at times. The single thing that keeps our hearts plugging along is our faith. "But God didn't take away autism," you might think. No, He didn't. Could He? Absolutely. But I choose to believe every day when I wake up that He knows best. I will be faithful to love my boy. I will do my best to do what I can and push the limits of what I think I can do. On the days I can't... on the days I don't have it, nothing makes sense, and it all seems too hard, and I don't have the heart to even look up, He carries me. He holds me.
Life doesn't wrap up in a nice, neat little bow all the time. It's not fair. It's not easy. But it is worth it. In the middle of the autism mess, we're given things to make us smile. My kids laughing... the rare moments they're playing together, or even alongside... are among the most amazing things in the world. I'm scared of a lot of things for my Ryan. Among the life-altering lessons I've learned while Ryan's blessed our lives... humility. Too often it's my pride... my way of thinking, predisposed "what I deserve" or "the way it should be"... that trip me. Leave me in tears, wondering how I'm going to keep doing this. Yes, somewhere between my kids and scripture I've seen more of how multi-faceted and sneaky pride is, and how it wrecks things without me even knowing it.
So as I'm cleaning my potty training three year old's puddles from the carpet as Ryan is asking over and over and over and over for milk/iPad/black cookies/whatever and Mae is trying to crawl up my back, I'm gonna try and remember... again... that it's these things that make up life. That I make mistakes and am difficult at times, too, even though my husband doesn't complain. But really, what matters is hanging with each other. Enjoying what we can, working through the rest. It's all about learning to love each other more than ourselves. To love as Christ loves us.
By the way... I decided, after a day like that, to go ahead and have burgers when I was going to serve leftovers. When Ryan saw his burger, guess what? He refused it and started screaming for the VSmile Thomas game. Never did eat, and it's still on the table. No, he didn't play VSmile... and yes, it was noisy. Oh well.
Loving A Person
By Sara Groves and Gordon Kennedy
Loving a person just the way they are, it's no small thing
It takes some time to see things through
Sometimes things change, sometimes we're waiting
We need grace either way
Hold on to me
I'll hold on to you
Let's find out the beauty of seeing things through
There's a lot of pain in reaching out and trying
It's a vulnerable place to be
Love and pride can't occupy the same spaces baby
Only one makes you free
Hold on to me
I'll hold on to you
Let's find out the beauty of seeing things through
If we go looking for offense
We're going to find it
If we go looking for real love
We're going to find it
Tuesday, August 16, 2011
The Big K
On a warm June day three years ago, our little Richie was born. It was a day full of smiles and laughter (not just due to the morphine pump) and joy! Richie was the best little guy. And Ryan was staying with Eric's parents, who were keeping Ryan at Eric's sweet aunt and uncle's house (and they did that again when Mae was born... love this family). We were just getting used to the idea that it might be autism. But even in that glorious day of the birth of our Richie, there was reality.
Eric's phone rang, piercing the innocence of the day. He said a few things like "well, she just got through having the baby, I'll talk to her" and "I'm sure we'll participate." That was our diagnostician, and it was Ryan's first invitation to ESY (extended school year). Could he start Monday? It's just a half day, but he could use the speech. And the socialization.
So just a few short days from having our Richie, Eric and I dropped our precious three year old Ryan off at school for the first time. Having just had surgery I wasn't just real nimble, but made it to help. That day, when Ryan and Eric got home, the most amazing thing happened.
Ryan spoke.
He tried! After being all but preverbal, Ryan tried to tell us something at lunch. The first day of school EVER! We were elated. And we knew right then that we'd done the right thing.
Fast forward to late August the same year, and we were getting ready to send Ryan to full-day PPCD (preschool program for children with disabilities). I was beside myself at best. I felt like I was abandoning him. I felt like an absolute failure. Here I was, having given up my career that I'd worked so hard for, dropping off my boy at school, just a couple months after turning three. I used to say things like "well, there's something wrong, and I'm the one he's been around every day for three years... you do the math." My sad, desperate attempt to juxtapose heart-wrenching failure and jocularity. And I really believed that I'd done something wrong. "If you'd stop catering to him" and "just make him talk" and "you've just spoiled him" echoed in my ears... I'd heard them so many times.
The first day looming on the horizon, I did everything I could to make him feel safer. He had his supplies, and I even made him a pillow by hand, with his name embroidered by hand, our of fabric he picked out a year earlier. That green Veggietale fabric was the first thing he ever reached for in a store. He was nearly three. I was so excited that I bought three yards. Money was incredibly tight, but I didn't care. My boy actually communicated that he wanted that, and it was within my grasp. Then we went to "meet the teacher" and I saw that several kids had covers for the cold, plastic nap mats they had to have. So overnight, I cut, ironed, stitched, and faked it until Ryan had a nap mat cover that matched his pillow. Did he care that his nap mat wasn't covered? Not that I know of. But it made me feel better.
Now it's three years of PPCD and the same fabulous teacher later, and we're going to kindergarten in less than a week.
I want to toss the lunch monkey every time I think about it.
Ryan has progressed a ton since that first day of summer school ever. He's begun asking for things, can repeat just about every line from every movie he loves, and can read more than we know. He can identify all his letters, numbers, can count to 100, can identify all his shapes (even octagon, pentagon, hexagon since he was three), knows all his colors and then some, can name every Thomas train, and he's just amazing. But he doesn't tell you his name, who we are, where we live, or who his brother and sister are. Send him to the bathroom and he'll go potty, but he'll stand there and play with the faucet for an hour if you let him. And when things start to change, he has a tendancy to calm himself by... well... stimming on his bowels. I know it's gross. I wash his clothes. He has no fear of strangers, no sense of danger except candles. He'll scream and climb up the nearest adult. He can't stand unpredictable things. Flies freak him out. Butterflies and candles sound so peaceful... not for Ryan. Not sure which level of hell that'd be for him, but it wouldn't be pretty.
That first day of PPCD, I cried all the way home. And off and on the rest of the day. I cried as I left every day for at least the first sememster. The whole first semester was hard on all of us. His dear teacher was a first-year teacher, and he baptized that poor woman by fire. She turned out to be a great teacher, and wonderful for kids who need organization and routine (not "need"... all kids need that... but REQUIRE) and loves those kids like crazy. He made leaps and bounds in her classroom because she lovingly pushed him. She shared with me what I needed to know so that we kept school and home as consistent as possible.
So kindergarten is coming. I would be even more nervous, but his teacher-to-be, after listening to what autism is and what the kids need, rose to the challenge, asking to have a child like Ryan (or Ryan himself... I don't want to speak out of turn). We know she's a great teacher. We know everything we could know to make us feel better. I've been telling him all summer about her... and he even said her name for the first time Sunday! I was so happy. I think he said something about school and wanting her... we still can't understand everything he says, though we try.
Even with all these positive things, I look at my boy while he's screaming till a vein pops out on his neck, and my stomach churns. But he needs to try this. I know it, I feel it. He needs the chance. I'm ready to do whatever he needs to make this work. But I'm nervous. For so many reasons. This time the nap mat and the pillow will stay on the shelf. He's good at using picture schedules. He's been asking for school... ASKING to go to school, in his own Ryan way... so what in the world is my problem?
I'm his mother. He's my son. He's special, and not just because he has challenges. I want him to have a great time, to enjoy the days, to make friends and just be happy. So like all of us parents have had to do since day one, I have to keep letting go, and be ready to catch him if he falls.
But I think he's gonna fly.
Stay tuned for more about the first day... I'm sure I'm not through freaking out!
Eric's phone rang, piercing the innocence of the day. He said a few things like "well, she just got through having the baby, I'll talk to her" and "I'm sure we'll participate." That was our diagnostician, and it was Ryan's first invitation to ESY (extended school year). Could he start Monday? It's just a half day, but he could use the speech. And the socialization.
So just a few short days from having our Richie, Eric and I dropped our precious three year old Ryan off at school for the first time. Having just had surgery I wasn't just real nimble, but made it to help. That day, when Ryan and Eric got home, the most amazing thing happened.
Ryan spoke.
He tried! After being all but preverbal, Ryan tried to tell us something at lunch. The first day of school EVER! We were elated. And we knew right then that we'd done the right thing.
Fast forward to late August the same year, and we were getting ready to send Ryan to full-day PPCD (preschool program for children with disabilities). I was beside myself at best. I felt like I was abandoning him. I felt like an absolute failure. Here I was, having given up my career that I'd worked so hard for, dropping off my boy at school, just a couple months after turning three. I used to say things like "well, there's something wrong, and I'm the one he's been around every day for three years... you do the math." My sad, desperate attempt to juxtapose heart-wrenching failure and jocularity. And I really believed that I'd done something wrong. "If you'd stop catering to him" and "just make him talk" and "you've just spoiled him" echoed in my ears... I'd heard them so many times.
The first day looming on the horizon, I did everything I could to make him feel safer. He had his supplies, and I even made him a pillow by hand, with his name embroidered by hand, our of fabric he picked out a year earlier. That green Veggietale fabric was the first thing he ever reached for in a store. He was nearly three. I was so excited that I bought three yards. Money was incredibly tight, but I didn't care. My boy actually communicated that he wanted that, and it was within my grasp. Then we went to "meet the teacher" and I saw that several kids had covers for the cold, plastic nap mats they had to have. So overnight, I cut, ironed, stitched, and faked it until Ryan had a nap mat cover that matched his pillow. Did he care that his nap mat wasn't covered? Not that I know of. But it made me feel better.
Now it's three years of PPCD and the same fabulous teacher later, and we're going to kindergarten in less than a week.
I want to toss the lunch monkey every time I think about it.
Ryan has progressed a ton since that first day of summer school ever. He's begun asking for things, can repeat just about every line from every movie he loves, and can read more than we know. He can identify all his letters, numbers, can count to 100, can identify all his shapes (even octagon, pentagon, hexagon since he was three), knows all his colors and then some, can name every Thomas train, and he's just amazing. But he doesn't tell you his name, who we are, where we live, or who his brother and sister are. Send him to the bathroom and he'll go potty, but he'll stand there and play with the faucet for an hour if you let him. And when things start to change, he has a tendancy to calm himself by... well... stimming on his bowels. I know it's gross. I wash his clothes. He has no fear of strangers, no sense of danger except candles. He'll scream and climb up the nearest adult. He can't stand unpredictable things. Flies freak him out. Butterflies and candles sound so peaceful... not for Ryan. Not sure which level of hell that'd be for him, but it wouldn't be pretty.
That first day of PPCD, I cried all the way home. And off and on the rest of the day. I cried as I left every day for at least the first sememster. The whole first semester was hard on all of us. His dear teacher was a first-year teacher, and he baptized that poor woman by fire. She turned out to be a great teacher, and wonderful for kids who need organization and routine (not "need"... all kids need that... but REQUIRE) and loves those kids like crazy. He made leaps and bounds in her classroom because she lovingly pushed him. She shared with me what I needed to know so that we kept school and home as consistent as possible.
So kindergarten is coming. I would be even more nervous, but his teacher-to-be, after listening to what autism is and what the kids need, rose to the challenge, asking to have a child like Ryan (or Ryan himself... I don't want to speak out of turn). We know she's a great teacher. We know everything we could know to make us feel better. I've been telling him all summer about her... and he even said her name for the first time Sunday! I was so happy. I think he said something about school and wanting her... we still can't understand everything he says, though we try.
Even with all these positive things, I look at my boy while he's screaming till a vein pops out on his neck, and my stomach churns. But he needs to try this. I know it, I feel it. He needs the chance. I'm ready to do whatever he needs to make this work. But I'm nervous. For so many reasons. This time the nap mat and the pillow will stay on the shelf. He's good at using picture schedules. He's been asking for school... ASKING to go to school, in his own Ryan way... so what in the world is my problem?
I'm his mother. He's my son. He's special, and not just because he has challenges. I want him to have a great time, to enjoy the days, to make friends and just be happy. So like all of us parents have had to do since day one, I have to keep letting go, and be ready to catch him if he falls.
But I think he's gonna fly.
Stay tuned for more about the first day... I'm sure I'm not through freaking out!
Thursday, August 11, 2011
Disclaimer Worthy Day
DISCLAIMER... It's been a long, hard, loud, nerve-wracking day. Really having to reach to my toes and scrape the bottom of the barrel of my faith to get through. This post is a culmination of thoughts throughout the day, and at varying degrees of frustration, borne out of a day of just that. I can promise no inspiration today, but I can promise honesty.
If you read that and want to continue, hang on. But don't say I didn't warn you.
After a long time of feeling guilty, inexcusably inadequate, and at times just plain stupid, I've come to a conclusion. A few, actually. Since you've all been so sweet and encouraging to read my stuff all this time, I'm sharing them with you. Most of these things are based on experience. Too many on bad ones. This is all stuff I haven't mastered, will likely never master, but I'm gonna try with all I have. This autism mess hurts too much to not try. Maybe you can remind me of one or more someday? Ah, thanks. I knew you'd understand.
First, I am first and foremost God's child. I am a believer in the sovreignty of God, and therefore choose to rest in that. He has chosen me to live my life and all of whatever comes into it. There will be people who have issues with this, and they are welcome to have them. Spare me the conspiracy talk about whether or not He exists... you ask me how I know He lives? He lives within my heart. I say that on the other side of a lot of hard times, and in the midst of an everyday hard time.
Second, I am Eric's wife. I promised to love and care for him through it all, and I'll keep clinging to that promise. We are together for a reason, and we will contiue to work together through all the craziness and end up at the end of the night, on the couch, finding Eric and Crystal again. Mommy and Daddy will be back soon enough. Sure, we spend time talking about the kids. But hey, that's what we're doing right now. Kids and band.
Third, I should not apologize for or deny what is first. I will not apologize for WHO is first. Or second, or third. And if I really mean all that, I cannot separate the sovreignty of God from every part of my life. If I truly believe what I say I believe, I believe without a doubt that Ryan is who he is for a reason. I wish it was easier. I wish I had the answers. But I don't. I don't know why. I don't know why it's so hard to transition sometimes. I don't know why some of your kids suffer from seizures and Ryan's been spared. I don't know why the meltdowns happen, or what causes autism. All I know is what gets me through. And that is that I know that there is a plan for my kids... all of them... just like there is for me. Jeremiah 29:11 has been a staple in my mind and heart through tons of things..."I know the plans I have for you, says the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future." This does not at all mean that I don't think we should research causes and cures, just the opposite! Study away! Share what we learn! But my hope and joy do not rest in the maybe of a promise of humans.
I will realize that everyone else's first, second, third, and so on are their choices, not mine. God did not put me here to fix everyone else, for I do not know what is best for anyone but me, and half the time I get that backward. If they ask what I think, I will answer gently, out of love, or I will keep my piehole shut. If I'm ugly to you, smack me. Really, I know better.
I will seek to understand, not to judge. I will educate myself in matters, not base my decisions on emotion. Emotions can be deceitful and, when not weighed and balanced by truth, can do an amazing amount of damage.
I will do my best to be slow to speak, slow to anger with everyone... even those with whom I disagree. I will, however, admit when I disagree. Not my strongest point thus far in life, disagreeing.
I will trust that everyone is doing their best with what they were given.
I will not belittle, berate, bully, and be downright ugly to get my point across.
I realize that I fail. A lot. There is more undone on my to-do than I want to admit. I am not sure how to tell anyone to deal with meltdowns with Ryan, and I'm his mother, for cryin' out loud. And I do.
I will realize that failure is a large part of even the smallest success. Who can be a success without failing a little? I've heard that WD40 is called "WD40" because it was the fortieth... FORTIETH... formula that worked. Gotta keep trying.
There are days, like today, when due to taking care of everything else and everyone else, I will be in my nightgown at 2:08 in the afternoon, having not showered in an embarrassing amount of time. I will try to do better in the morning. If I do not do better in the morning, I will not feel bad.
I will ask my husband to watch the kids so I can shower and dress when he gets home, and I will not feel guilty. He loves me, he loves our children, and he cannot meet my needs if I hide them.
I will be thankful for a man who thinks I'm a knockout in my old, raggedy t-shirt nightgown and crazy hair. Even when he gets home at 5:30 and I'm still wearing it. I'll also be thankful that he trusts I've been doing my best, because he does.
I will do my best to let those who want to get it, it. I will thank the Lord, truly, that they wanted to try at the same time I thank Him for the people who do get it, for whatever reason. I will continue to be equally thankful for those who hug us, admitting they don't know how to help or what to do other than pray and be there to hear us.
I will try to remember that no one can ever fully understand everything that goes on here in a day and why it is so frustrating, yet so wonderful. Even others with ASD kids can't completely understand, although they come the closest.
I will remember that in any organization, any group of people, there will be differences of opinion. I will not be a victim of fear-mongering or guilt trips from any direction, for any reason, from anyone. I have enough guilt over the sheer amount of stuff I'm not keeping up with, thank you.
There will be times when others are insensitive, or even downright ugly. When given an opening, I will attempt to educate and enlighten. I will not, however, teach a pig to sing... it wastes your time and annoys the pig. I will not feel guilty if I miss an opportunity, I will simply walk forward, head up, heart open, and keep focusing on making my family's life the best it can be. Or I'll continue carrying my screaming six-year-old down the hall, smiling at everyone who's looking at us like we have three heads.
I will continue to pray that I never sound like I have it figured out, or I know what you should be doing. Or how you should be feeling. That is such a hurtful attitude full of distrust. God only knows, other than you, what you've really going on inside. Again, no judgement.
I will not compare my situation to yours, nor should you. We both have hard days, friend. Let's just help each other through them.
There will be days full of screaming for hours on end. Not every day, not all the time. But days like today when the meltdown lasts over two hours solid, Ryan asking in screams for the same thing over and over and over with machine-gun repetition for hours at a time... and I call my Mom intending to check on her, and wind up weathering it with her on the phone, holding my hand from hundreds of miles away... and in these times I will realize that I'm blessed beyond measure, even when I can't feel it.
To all of you in the ASD family, it's time to stand together. To reach out to help one another up, to pat backs, to help each other find a way to keep... or start... enjoying life. To magnify the amazing parts of our children, brothers, sisters, selves, friends, and try to help deal with the not-so-amazing. How? That's up to each of us individualy. But I do know that the majority of the blogs I read and the chatboards and comment boards I look at and comment on are there for just that. Sharing our experiences... the good, the bad, and the ugly. There are differences at times, but from what I've seen, they are handled with civility. And that's the way it should be. Because at the end of the day, whether you're a ditch-digger or hold a doctorate, make $20,000 a year or $100,000+, your experiences COUNT and they MATTER. No matter what anyone says. Whether you vaccinate or not. Whether you eat gluten and casien or not. Stay home or work. Home school, public school, or private school. We all just want our loved ones to be happy, safe, and comfortable. Out of pain, emotional and physical. Let's chuck the guit trips and stick together in any way we can.
I will recognize our limitations. I will also push them at times. I will keep trying to abolish "can't" from our vocabulary. Not yet? Sure. But can't ever? We have to believe we can overcome. The alternative isn't acceptable.
I can't (haha) say this enough. I will make mistakes. I will not do everything right. I haven't yet. But I will continue to do my best, because that's all the kids deserve. I will try to remember that seeing me deal with my worst is going to be a bigger lesson for the kids than what I did right. I will hug and apologize when necessary.
I will cry. I will curl up in my husband's arms, sobbing, when I can't take any more.
I will realize the ability to do that shows more strength than I realize.
I will continue to hold unswervingly to the hope I profess... for He who promised us is faithful. (Hebrews 10:23, strung-out mama paraphrased)
If you read that and want to continue, hang on. But don't say I didn't warn you.
After a long time of feeling guilty, inexcusably inadequate, and at times just plain stupid, I've come to a conclusion. A few, actually. Since you've all been so sweet and encouraging to read my stuff all this time, I'm sharing them with you. Most of these things are based on experience. Too many on bad ones. This is all stuff I haven't mastered, will likely never master, but I'm gonna try with all I have. This autism mess hurts too much to not try. Maybe you can remind me of one or more someday? Ah, thanks. I knew you'd understand.
First, I am first and foremost God's child. I am a believer in the sovreignty of God, and therefore choose to rest in that. He has chosen me to live my life and all of whatever comes into it. There will be people who have issues with this, and they are welcome to have them. Spare me the conspiracy talk about whether or not He exists... you ask me how I know He lives? He lives within my heart. I say that on the other side of a lot of hard times, and in the midst of an everyday hard time.
Second, I am Eric's wife. I promised to love and care for him through it all, and I'll keep clinging to that promise. We are together for a reason, and we will contiue to work together through all the craziness and end up at the end of the night, on the couch, finding Eric and Crystal again. Mommy and Daddy will be back soon enough. Sure, we spend time talking about the kids. But hey, that's what we're doing right now. Kids and band.
Third, I should not apologize for or deny what is first. I will not apologize for WHO is first. Or second, or third. And if I really mean all that, I cannot separate the sovreignty of God from every part of my life. If I truly believe what I say I believe, I believe without a doubt that Ryan is who he is for a reason. I wish it was easier. I wish I had the answers. But I don't. I don't know why. I don't know why it's so hard to transition sometimes. I don't know why some of your kids suffer from seizures and Ryan's been spared. I don't know why the meltdowns happen, or what causes autism. All I know is what gets me through. And that is that I know that there is a plan for my kids... all of them... just like there is for me. Jeremiah 29:11 has been a staple in my mind and heart through tons of things..."I know the plans I have for you, says the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future." This does not at all mean that I don't think we should research causes and cures, just the opposite! Study away! Share what we learn! But my hope and joy do not rest in the maybe of a promise of humans.
I will realize that everyone else's first, second, third, and so on are their choices, not mine. God did not put me here to fix everyone else, for I do not know what is best for anyone but me, and half the time I get that backward. If they ask what I think, I will answer gently, out of love, or I will keep my piehole shut. If I'm ugly to you, smack me. Really, I know better.
I will seek to understand, not to judge. I will educate myself in matters, not base my decisions on emotion. Emotions can be deceitful and, when not weighed and balanced by truth, can do an amazing amount of damage.
I will do my best to be slow to speak, slow to anger with everyone... even those with whom I disagree. I will, however, admit when I disagree. Not my strongest point thus far in life, disagreeing.
I will trust that everyone is doing their best with what they were given.
I will not belittle, berate, bully, and be downright ugly to get my point across.
I realize that I fail. A lot. There is more undone on my to-do than I want to admit. I am not sure how to tell anyone to deal with meltdowns with Ryan, and I'm his mother, for cryin' out loud. And I do.
I will realize that failure is a large part of even the smallest success. Who can be a success without failing a little? I've heard that WD40 is called "WD40" because it was the fortieth... FORTIETH... formula that worked. Gotta keep trying.
There are days, like today, when due to taking care of everything else and everyone else, I will be in my nightgown at 2:08 in the afternoon, having not showered in an embarrassing amount of time. I will try to do better in the morning. If I do not do better in the morning, I will not feel bad.
I will ask my husband to watch the kids so I can shower and dress when he gets home, and I will not feel guilty. He loves me, he loves our children, and he cannot meet my needs if I hide them.
I will be thankful for a man who thinks I'm a knockout in my old, raggedy t-shirt nightgown and crazy hair. Even when he gets home at 5:30 and I'm still wearing it. I'll also be thankful that he trusts I've been doing my best, because he does.
I will do my best to let those who want to get it, it. I will thank the Lord, truly, that they wanted to try at the same time I thank Him for the people who do get it, for whatever reason. I will continue to be equally thankful for those who hug us, admitting they don't know how to help or what to do other than pray and be there to hear us.
I will try to remember that no one can ever fully understand everything that goes on here in a day and why it is so frustrating, yet so wonderful. Even others with ASD kids can't completely understand, although they come the closest.
I will remember that in any organization, any group of people, there will be differences of opinion. I will not be a victim of fear-mongering or guilt trips from any direction, for any reason, from anyone. I have enough guilt over the sheer amount of stuff I'm not keeping up with, thank you.
There will be times when others are insensitive, or even downright ugly. When given an opening, I will attempt to educate and enlighten. I will not, however, teach a pig to sing... it wastes your time and annoys the pig. I will not feel guilty if I miss an opportunity, I will simply walk forward, head up, heart open, and keep focusing on making my family's life the best it can be. Or I'll continue carrying my screaming six-year-old down the hall, smiling at everyone who's looking at us like we have three heads.
I will continue to pray that I never sound like I have it figured out, or I know what you should be doing. Or how you should be feeling. That is such a hurtful attitude full of distrust. God only knows, other than you, what you've really going on inside. Again, no judgement.
I will not compare my situation to yours, nor should you. We both have hard days, friend. Let's just help each other through them.
There will be days full of screaming for hours on end. Not every day, not all the time. But days like today when the meltdown lasts over two hours solid, Ryan asking in screams for the same thing over and over and over with machine-gun repetition for hours at a time... and I call my Mom intending to check on her, and wind up weathering it with her on the phone, holding my hand from hundreds of miles away... and in these times I will realize that I'm blessed beyond measure, even when I can't feel it.
To all of you in the ASD family, it's time to stand together. To reach out to help one another up, to pat backs, to help each other find a way to keep... or start... enjoying life. To magnify the amazing parts of our children, brothers, sisters, selves, friends, and try to help deal with the not-so-amazing. How? That's up to each of us individualy. But I do know that the majority of the blogs I read and the chatboards and comment boards I look at and comment on are there for just that. Sharing our experiences... the good, the bad, and the ugly. There are differences at times, but from what I've seen, they are handled with civility. And that's the way it should be. Because at the end of the day, whether you're a ditch-digger or hold a doctorate, make $20,000 a year or $100,000+, your experiences COUNT and they MATTER. No matter what anyone says. Whether you vaccinate or not. Whether you eat gluten and casien or not. Stay home or work. Home school, public school, or private school. We all just want our loved ones to be happy, safe, and comfortable. Out of pain, emotional and physical. Let's chuck the guit trips and stick together in any way we can.
I will recognize our limitations. I will also push them at times. I will keep trying to abolish "can't" from our vocabulary. Not yet? Sure. But can't ever? We have to believe we can overcome. The alternative isn't acceptable.
I can't (haha) say this enough. I will make mistakes. I will not do everything right. I haven't yet. But I will continue to do my best, because that's all the kids deserve. I will try to remember that seeing me deal with my worst is going to be a bigger lesson for the kids than what I did right. I will hug and apologize when necessary.
I will cry. I will curl up in my husband's arms, sobbing, when I can't take any more.
I will realize the ability to do that shows more strength than I realize.
I will continue to hold unswervingly to the hope I profess... for He who promised us is faithful. (Hebrews 10:23, strung-out mama paraphrased)
Wednesday, August 10, 2011
Stop... Take a Deep Breath...
There's so much randomness that goes on here, even with the routine. Right before I started this post, Richie came to the kitchen table and held up his little bare foot. "My foot hurts." Big pouty face. Sweet pouty blue eyes. "Where does your foot hurt, sweetie?" He looks at me like I obviously shouldn't need to have that explained, and says "Onna floor."
Alrighty then! I smiled, kissed his foot, and he was on his way.
Back to typing... thinking...
Realize I heard a toilet flush. At the same time, realize I sent Ryan to the bathroom because I caught him trying to hide and uh... "use" his pants. CRUD! I forgot. So I hop up and run to the bathroom, where I find my son experiencing the wonders of sticking the end of the toilet paper, still attached to the roll, in the toilet and flushing. No idea how much WAS on the roll, but now there's hardly any. Oh dear.
So I start to freak out, and call my Mom... the usual putter-downer of my freakouts. Hearing her laugh calms me down, and yes, the toilet isn't overflowing. Whew.
Back to work. Sorta. Soon Mae toddles up clutching her bedraggled pink bear, spouting "shish?" through her binky. "Yes, sweet pea, you can have some goldfish."
Richie again... "Wanna go downna swiiide?" He loves to use me as a slide. Housekeeper, cook, playgym... that's me.
Start typing again, and I hear a thud, then a scream. "Richie, what happened?" After some prodding, I learn that Mae was jumping on the couch. Then she fell. No, I hadn't been gone for more than a minute or two!
This is what happens when I start to do anything I start to do, and even if you haven't any special needs kids, I'm sure you can relate! Kiss a boo boo here, hunt down a lost lovey there. Hug a teddy bear or dolly here, put down a revolt there. Put out a fire here, clean up accidents there. Don't even get me started on the autism end of things... Ryan has had a meltdown stemming from my refusal to out a sweater on him three days in a row. It's only 107 outside. And no, it's not cool in the house. It's cool enough to be healthy, but not to need a sweater! In the afternoons, it's time to wrestle... well, drag his brother all over the house by the arm, kick him off the couch, etc. It gets interesting.
Now I know that all these things are important... after all, it's the daily day-to-day where kids learn who they are, who we are, what to believe in. The day-to-day is where the rubber meets the road, folks. The hard part is in the staying afloat through all the crazy. The mundane. Literally, every morning from 7:00 to about 11:00 is spent on others' toileting habits for me! We're almost through potty training Ryan, though there are still accidents at times. Richie's just starting potty training, and Maelynn is still full-time cloth diapered. To tell the truth, the completion of the tasks of changing, wiping, flushing, coercing, rewarding, scrubbing potty accidents from the carpet, even picking up poopy pebbles from the carpet isn't a problem. It's easy to do those things joyfully, because I always wanted kids. SO very grateful for their presence in my life. The thing that makes me frustrated?
What I don't get done.
I love to make bows. Haven't made a bow in forever. I have patient friends, thank goodness. I have project after project looming on the horizon. Mae's room was painted, so was the bathroom when Eric was still home and able to work from here. I cinched up my big girl panties and painted the walls of the kitchen last week with the kids here under foot. I'm so glad! It's this beautiful, cool, clean, soft blue, and I'm hoping it will help calm all of us... but I digress. There are books I want to read, have started to read, and haven't finished. I can barely keep up with dishes and laundry and cooking, much less everything else. The stuff I feel the worst about is the keeping up with what the kids need. I want Richie and Maelynn to be as educated as the next kid when they do start school. I want to be sure Ryan has the tools he needs to succeed... and that's such an amazingly loaded-down statement there's not a way to describe it.
Sometimes chasing after all these things at once catches up to me. There are times when I cannot feel hope. I just can't feel it. Nothing is inspiring. Everything is too hard. Being screamed at so much, peppered with requests for this that and the other, protecting the littles from their brother's insistance that they're toys... and there are the changes looming on the horizon, and the ones we've already been slapped with... nobody tells you that there will be a time when, all of a sudden, he's a "big boy". All of a sudden, all the people who thought, or acted like they thought, you were just an overprotective, diagnosis-as-an-excuse-for-behavior type of parent begin to see that you weren't kidding. This autism thing becomes real in an instant. No, a gut-wrenching, heart-dropping series of realizations. Several slaps. Hits to the gut. Many of them below the belt, underhanded... dirty.
The funny thing is, though the numbers are growing, with 1 in 110 kids diagnosed with and ASD, so few people want to help you deal with it. You become a member of the "it's just too hard to leave the house and no one understands" club. You are handed a house on "Autism Street", and whether you like it or not, you get to deal with it all. Your online world of people who get it grows. Face to face relationships with people who really know you, who trust that you're doing your dead-level best to keep the ship afloat, have wealth far greater than diamonds. They become like oxygen. Somewhere in the middle of neverending potty training messes, toys, meltdowns, the big boy who's become like a venus flytrap, snagging his brother and yanking him around every time he gets the chance, and the usual kid drama over toys... the little things become huge. One little thing that someone says on the outside magnifies itself in your stress-roasted heart. So much energy is spent staying calm, being his (their) rock... their lighthouse... their outlet to learn to stay calm and deal with things... that it's like the old cartoons where Popeye or Bluto is holding up this ginormous barbell, only to have a feather float on it, sending him crashing through the floor.
I go through the floor about once an afternoon on an average day.
There are so many times I look up when something goofy happens and ask "REALLY?!?!?!" When I'm not calm enough to ask "to what end". Usually this comes as something happens like finding a yellowjacket in the house. The last time that happened, I cried. I actually yelled to God, "Really? Do I really need this right now?!" You just take and take and take the stress, working hard to stay calm, reasonable, rational, until something happens and something has to give.
What gives, you ask?
You do. More and more. You learn what it means to die to yourself and your own desires and even dreams, sometimes several times a day. You learn that this is the greatest gift one can give. You learn that you can do this and still revisit that old person sometimes... just within reason. You learn what you can take, and that you can take more than that. The tears roll, you spill your guts to the nearest person to you or just flat to heaven or both, then jump back in with both feet. You find a way to relax just a little... even for five minutes. The online support group I've found and continue to find is such a blessing. Somewhere between that, the comfort that I take in God's sovreignty, and curling up in my husband's arms is where I survive. One of the days last week, as I scanned my Twitter timeline, I ran across a tweet saying simply to stop, take a deep breath, smile. And I did.
The crisis that underscores this whole mess is that I have three beautiful kids. Those three beautiful, amazing creatures are growing and changing. They will not be the same forever. There may come a day when this house doesn't ring with the tinkling bell-like giggles of a little girl being tickled. There will be a day when I wish my sweet girl would stick her bear in my face for kisses. When I wish I could hear Richie's "I wove you Mommy!" given over and over and over. When I wish he'd ask "Mommy pick up a Richie?" with his arms outstreched, eyes wide and innocent. When I wish that Ryan would still fit in my lap... oh wait... we're almost there. I'm honestly a little disappointed in myself. There was a time when I sat in the emergency room at St. Paul's in Dallas, wishing I could back up and do something differently. Anything differently. I remember wishing I could do something that would make the child within alive again. They had to be wrong. They had to be. But at the rate I was losing blood, I knew they were right. As I watched ceiling tiles go by as they ran my bed down the hall to an emergency procedure, I remember begging God to give me another chance at this. And please, please don't let me remember anything. And please God, just let me live to see my Ryan again.
I awoke to the reality that I wasn't going to have another baby in June. But I also awoke to Eric, his sister and her husband. I went home in those wee hours the day after Christmas to my husband's dear parents. I woke up with what felt like a large hole in my chest. My body kept moving, my heart kept beating, but I wasn't there.
Somewhere in between that hurt and autism's hurt is a reminder... or a few reminders. For one, every pain has to be felt and acknowledged as real. No, your pain is no less just because someone else's experience is "worse" or "more complicated". Don't compare. It just causes more hurt. Be there for each other, listen. No judging. None of us are qualified for that. Both the world of autism and the world of miscarriages carry with them stigmas, lack of wanting to acknowledge that anything is wrong- sometimes because it's just too hard, I guess. There's an underground, grass-roots type society with both... and they're both starting to speak out. More and more of the ones who made it or are making it through the pain are reaching out to others on cyberspace, in person, in support groups, on chatboards... and I pray that this will only get stronger. Life is too short to live in pain in secret. It's also too short to let others do the same.
So reach out today. Start your own blog. Stretch out your own arm... your own neck... and take a risk. You might make someone upset or uncomfortable... but you also might make someone's day, make a new friend, or even save a life.
And that crisis of having three beautiful kids?
The crisis is that I might be so busy with the stress that I miss their smiles, giggles, voices... that I might not feel their sweet, soft, pudgy little hands touching mine. God has given them to me for a short time.
So stop. Take a deep breath. Peel your shoulders from your ears. Smile.
I'm gonna do that right now... because it would be a tragedy to miss Moments Like This.
Alrighty then! I smiled, kissed his foot, and he was on his way.
Back to typing... thinking...
Realize I heard a toilet flush. At the same time, realize I sent Ryan to the bathroom because I caught him trying to hide and uh... "use" his pants. CRUD! I forgot. So I hop up and run to the bathroom, where I find my son experiencing the wonders of sticking the end of the toilet paper, still attached to the roll, in the toilet and flushing. No idea how much WAS on the roll, but now there's hardly any. Oh dear.
So I start to freak out, and call my Mom... the usual putter-downer of my freakouts. Hearing her laugh calms me down, and yes, the toilet isn't overflowing. Whew.
Back to work. Sorta. Soon Mae toddles up clutching her bedraggled pink bear, spouting "shish?" through her binky. "Yes, sweet pea, you can have some goldfish."
Richie again... "Wanna go downna swiiide?" He loves to use me as a slide. Housekeeper, cook, playgym... that's me.
Start typing again, and I hear a thud, then a scream. "Richie, what happened?" After some prodding, I learn that Mae was jumping on the couch. Then she fell. No, I hadn't been gone for more than a minute or two!
This is what happens when I start to do anything I start to do, and even if you haven't any special needs kids, I'm sure you can relate! Kiss a boo boo here, hunt down a lost lovey there. Hug a teddy bear or dolly here, put down a revolt there. Put out a fire here, clean up accidents there. Don't even get me started on the autism end of things... Ryan has had a meltdown stemming from my refusal to out a sweater on him three days in a row. It's only 107 outside. And no, it's not cool in the house. It's cool enough to be healthy, but not to need a sweater! In the afternoons, it's time to wrestle... well, drag his brother all over the house by the arm, kick him off the couch, etc. It gets interesting.
Now I know that all these things are important... after all, it's the daily day-to-day where kids learn who they are, who we are, what to believe in. The day-to-day is where the rubber meets the road, folks. The hard part is in the staying afloat through all the crazy. The mundane. Literally, every morning from 7:00 to about 11:00 is spent on others' toileting habits for me! We're almost through potty training Ryan, though there are still accidents at times. Richie's just starting potty training, and Maelynn is still full-time cloth diapered. To tell the truth, the completion of the tasks of changing, wiping, flushing, coercing, rewarding, scrubbing potty accidents from the carpet, even picking up poopy pebbles from the carpet isn't a problem. It's easy to do those things joyfully, because I always wanted kids. SO very grateful for their presence in my life. The thing that makes me frustrated?
What I don't get done.
I love to make bows. Haven't made a bow in forever. I have patient friends, thank goodness. I have project after project looming on the horizon. Mae's room was painted, so was the bathroom when Eric was still home and able to work from here. I cinched up my big girl panties and painted the walls of the kitchen last week with the kids here under foot. I'm so glad! It's this beautiful, cool, clean, soft blue, and I'm hoping it will help calm all of us... but I digress. There are books I want to read, have started to read, and haven't finished. I can barely keep up with dishes and laundry and cooking, much less everything else. The stuff I feel the worst about is the keeping up with what the kids need. I want Richie and Maelynn to be as educated as the next kid when they do start school. I want to be sure Ryan has the tools he needs to succeed... and that's such an amazingly loaded-down statement there's not a way to describe it.
Sometimes chasing after all these things at once catches up to me. There are times when I cannot feel hope. I just can't feel it. Nothing is inspiring. Everything is too hard. Being screamed at so much, peppered with requests for this that and the other, protecting the littles from their brother's insistance that they're toys... and there are the changes looming on the horizon, and the ones we've already been slapped with... nobody tells you that there will be a time when, all of a sudden, he's a "big boy". All of a sudden, all the people who thought, or acted like they thought, you were just an overprotective, diagnosis-as-an-excuse-for-behavior type of parent begin to see that you weren't kidding. This autism thing becomes real in an instant. No, a gut-wrenching, heart-dropping series of realizations. Several slaps. Hits to the gut. Many of them below the belt, underhanded... dirty.
The funny thing is, though the numbers are growing, with 1 in 110 kids diagnosed with and ASD, so few people want to help you deal with it. You become a member of the "it's just too hard to leave the house and no one understands" club. You are handed a house on "Autism Street", and whether you like it or not, you get to deal with it all. Your online world of people who get it grows. Face to face relationships with people who really know you, who trust that you're doing your dead-level best to keep the ship afloat, have wealth far greater than diamonds. They become like oxygen. Somewhere in the middle of neverending potty training messes, toys, meltdowns, the big boy who's become like a venus flytrap, snagging his brother and yanking him around every time he gets the chance, and the usual kid drama over toys... the little things become huge. One little thing that someone says on the outside magnifies itself in your stress-roasted heart. So much energy is spent staying calm, being his (their) rock... their lighthouse... their outlet to learn to stay calm and deal with things... that it's like the old cartoons where Popeye or Bluto is holding up this ginormous barbell, only to have a feather float on it, sending him crashing through the floor.
I go through the floor about once an afternoon on an average day.
There are so many times I look up when something goofy happens and ask "REALLY?!?!?!" When I'm not calm enough to ask "to what end". Usually this comes as something happens like finding a yellowjacket in the house. The last time that happened, I cried. I actually yelled to God, "Really? Do I really need this right now?!" You just take and take and take the stress, working hard to stay calm, reasonable, rational, until something happens and something has to give.
What gives, you ask?
You do. More and more. You learn what it means to die to yourself and your own desires and even dreams, sometimes several times a day. You learn that this is the greatest gift one can give. You learn that you can do this and still revisit that old person sometimes... just within reason. You learn what you can take, and that you can take more than that. The tears roll, you spill your guts to the nearest person to you or just flat to heaven or both, then jump back in with both feet. You find a way to relax just a little... even for five minutes. The online support group I've found and continue to find is such a blessing. Somewhere between that, the comfort that I take in God's sovreignty, and curling up in my husband's arms is where I survive. One of the days last week, as I scanned my Twitter timeline, I ran across a tweet saying simply to stop, take a deep breath, smile. And I did.
The crisis that underscores this whole mess is that I have three beautiful kids. Those three beautiful, amazing creatures are growing and changing. They will not be the same forever. There may come a day when this house doesn't ring with the tinkling bell-like giggles of a little girl being tickled. There will be a day when I wish my sweet girl would stick her bear in my face for kisses. When I wish I could hear Richie's "I wove you Mommy!" given over and over and over. When I wish he'd ask "Mommy pick up a Richie?" with his arms outstreched, eyes wide and innocent. When I wish that Ryan would still fit in my lap... oh wait... we're almost there. I'm honestly a little disappointed in myself. There was a time when I sat in the emergency room at St. Paul's in Dallas, wishing I could back up and do something differently. Anything differently. I remember wishing I could do something that would make the child within alive again. They had to be wrong. They had to be. But at the rate I was losing blood, I knew they were right. As I watched ceiling tiles go by as they ran my bed down the hall to an emergency procedure, I remember begging God to give me another chance at this. And please, please don't let me remember anything. And please God, just let me live to see my Ryan again.
I awoke to the reality that I wasn't going to have another baby in June. But I also awoke to Eric, his sister and her husband. I went home in those wee hours the day after Christmas to my husband's dear parents. I woke up with what felt like a large hole in my chest. My body kept moving, my heart kept beating, but I wasn't there.
Somewhere in between that hurt and autism's hurt is a reminder... or a few reminders. For one, every pain has to be felt and acknowledged as real. No, your pain is no less just because someone else's experience is "worse" or "more complicated". Don't compare. It just causes more hurt. Be there for each other, listen. No judging. None of us are qualified for that. Both the world of autism and the world of miscarriages carry with them stigmas, lack of wanting to acknowledge that anything is wrong- sometimes because it's just too hard, I guess. There's an underground, grass-roots type society with both... and they're both starting to speak out. More and more of the ones who made it or are making it through the pain are reaching out to others on cyberspace, in person, in support groups, on chatboards... and I pray that this will only get stronger. Life is too short to live in pain in secret. It's also too short to let others do the same.
So reach out today. Start your own blog. Stretch out your own arm... your own neck... and take a risk. You might make someone upset or uncomfortable... but you also might make someone's day, make a new friend, or even save a life.
And that crisis of having three beautiful kids?
The crisis is that I might be so busy with the stress that I miss their smiles, giggles, voices... that I might not feel their sweet, soft, pudgy little hands touching mine. God has given them to me for a short time.
So stop. Take a deep breath. Peel your shoulders from your ears. Smile.
I'm gonna do that right now... because it would be a tragedy to miss Moments Like This.
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...)
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