It's 2:45, and all three kids are asleep. Yes, I've looked and it's not clouding up outside, dogs and cats are not living together, and I think the world's gonna make it to sundown on another day, Lord willing. I could just jump up and down because my biggest boy is napping! He's six, after all, but it's part of his routine to lay down and rest for at least a few minutes before he gets up to play. Usually that gives me at least ten to fifteen minutes to catch my breath and pick up after lunch.
Ok, I at least get the dishes to the sink. Let's be real.
I have a resolve this summer, and after our visit to the doctor for Mae's checkup, I'm all re-fired about it. The resolve actually began mid-semester this spring, when I was working with the clarinet kids from one of the bands in our middle school. I used to be a band director, and although that seems like five worlds away even though one lives in my house, you can't just not be a band director... it's somewhat a part of you. Well, I guess if you loved it like I did it is, anyway. The band directors in our district (the same staff Eric works on) are kind enough to trust me with their clarinet players... 'cause that's my specialty. I swear it's more for me than it is them. The littles get to come along and everything. We were working on one of the pieces to get the kids ready for concert and sightreading contest, and it hit me how easily this all comes to me. I have a large bag of tricks, tips, suggestions, and band-aids for just about all their problems. If I don't, I know who to ask. I can usually keep the class rolling along pretty happily, though not perfectly, and still manage to accomplish a little something. Usually (I think, anyway) the kids have some fun, and I have a blast getting to do something that I love. But that day, as I stood back flipping the rolodex of tricks in my brain to help this one student make a connection, it hit me...
I can translate this alien language known as sheet music to random other people's children and relate things to them with ease. Why can't I transfer that to my son?
All along I'd thought of teaching band in a completely separate compartment of my brain than teaching my son. But how much more important can something be than just everyday basic communication? Putting on your pants? The process of going to the bathroom (and yes, it's a process)? Why can I have all this patience and "it's okay honey, you'll get it" with something that is (in the grand scheme of things- don't kill me, band friends) so trivial?
Then it began to sink in. Music- the reading, playing, manufacturing end of it- is like an alien planet. Take the average beginning band student with no prior musical knowledge other than how to operate an ipod. They have to be taught how to behave in the band setting, how to read a new language, how to translate that read language into how to play their instrument, and each instrument has its own "language" in itself with different fingerings, techniques, and nuances. I LOVE showing kids this new world! I love sharing something that has brought and continues to bring me so much happiness.
But why is it that sharing those things comes so easily? It seems like all the musical knowledge and teacher-knowledge I have fell out of the sky. One day it wasn't there, the next day it was. Or was it?
No, it wasn't! Yes, I had a God-given talent for it (and if you don't believe people are predisposed to one thing or another you never saw me try to play basketball... there's a reason the coaches didn't complain when I quit athletics after junior high, people!) and yes, I believe that my education was a gift from above. But all that knowledge, all that ability did not come overnight. It came from 5th grade when we started on Flutophones (go ahead and pay a little more and get recorders, teachers. Your ears will thank you.), then to 6th grade when we decided I'd play clarinet because my Mom had hers from school, through high school (thanks, Mr. Marsh) and college (thanks, Mr. Hanna). All along the way, there were countless hours of practice. Not always easy. Not always fun. And oh, the education classes... don't get me started. I love you, Hardin-Simmons University, but learning to teach didn't come from ed classes. It came from paying attention in band... not just to what I had to do, but to how the director was getting it all across to everyone else. From remembering what frustrated me and others around me and learning ways around that. It came from asking, asking, asking... and then listening, listening, listening. It also came from digging in and hanging on until I mastered something I loved enough that the state of Texas would let me get paid to do it. Then it came from the patience of someone who had already figured it out and was willing to share that knowledge with someone else by giving them the chance of a lifetime (thanks, Pat Autry).
So what in the world does all this have to do with autism, Ryan, and a resolve for the summer?
God gave me, so undeserving, so wretched... a chance to delve in and do something fun. Band was a blast! And maybe it will be again someday for me, we'll just have to wait and see. But band taught me that I have to pay attention all the time... to try to see a chance to learn in everything. It taught me to be patient, to be creative in how I explain something new. Band taught me that although you may not get it right fifty or five hundred times, you will eventually. And when you do, oh how wonderful!!! And if I learned nothing else in band, I learned from Mr. Mike Marsh the kind of true humility that admits I will never be through learning, and I certainly do not know all there is to know.
So I'm learning. Digging into all the techniques, information, and advice from the people who have been there that I can find. Figuring out where Ryan is, exactly what he understands and does not, and applying that to every situation. That's EVERY situation. Every day all day my most important three students are with me, and since we'll be traveling a little this summer and won't be doing extended school year, I have a fabulous, precious opportunity, and I do NOT want to miss it. I want to make every day count. That said, I'm not completely sure how to do it, and there will still be a lot of feeling around and reading, asking, and listening so that I can teach my Ryan (and Mae and Richie, too) how to get around this alien world.
I'm not naive enough to think that I can save his whole world in one summer... but I am going to do my best, because I know that good stewardship is what God expects. Because as important as band was and is to me, my children are infinitely more important... and it's time to be as purposeful and urgent about that as I was about absorbing band stuff. As obvious as it sounds, it took me until this spring to catch this. I'm thankful to have caught it at all, because...
As much as I miss kids running and hugging me in reandom public places, I'd miss my kids' hugs more.
As much fun as I had meeting new people and learning new things, the new things I'm learning now will make sure my kids can have that kind of fun later.
As amazing and important as I believe the band experience is for students and directors, someone else can do that... but when it comes right down to it, I'm the only mama in this family. And who's better equipped to handle an autistic 6 year old, a three year old and a 15 month old at the grocery store than someone who can take a couple of buses full of hyper sixth-graders to an amusement park?!
Tuesday, May 31, 2011
Monday, May 30, 2011
Birthday, Ryan-style
Today is an important, almost historical, day in our family. Not only is it the birthday of our sweet firstborn, Ryan, it was my Granny's birthday, Nanny and Grandad's anniversary, and of course, it also happens to be Memorial Day. My Granny was super special, and I remember that she thought it was pretty cool when nanny and Grandad got married on her birthday. I also remember that Granny was crazy about little boys... and oh, would I have ever have had a time if she'd met mine! Mom, Bree, and Nanny would never let me forget they predicted Ryan would be born on Granny's birthday.
Ryan's due date was actually June 9, but a sonogram the Friday before revealed that he was frank breech. Eric drove me from Fort Worth to Denton (made sense back then, trust me) that Monday morning and we were both nervous, just about ready to explode. Or maybe it was me that was about to explode! A grackle hit the windshield of our Camry and I started laughing so hard I couldn't stop, and I don't think I stopped until we got to the hospital, where I promptly shared the story with the nurses who all thought I was nuts. We were just going to the hospital to have Ryan turned, and we thought we'd go home and wait for me to go into labor. It sounded so easy! They'd just "massage" Ryan until he flipped himself over! Sounds great, huh! I mean, what pregnant woman doesn't hear the "m" word and think "oh, sure... I can totally do that!"
I'm here to tell ya, sister... that was no "massage". I think my husband's hand is permanently cramped from me clamping down on it while the doctor attempted to shove his hands through my skin.
Yeah, don't try that. I've talked to exactly one person who it worked for.
So, with my doctor heading out of the country on a medical mission trip for ten days the next day, we decided we'd either induce or have a section. The options weighed, just before noon on May 30, 2005 I became a member of the zipper club and we had our first amazing, chubby, perfect-looking baby boy. What an amazing day. I still remember the sick-to-my-stomach, oh-my-word-I'm-the-mommy feeling that came and went in between doses of demerol. I was excited and so happy to be a mother finally, and it was all so surreal, but at the same time there was this strange desire to call for the nurse, and tell her, "There must be some mistake. I know I'm a grownup, married woman, but holy COW am I ever not ready for this! I'm so not good enough to receive this. You know I'm gonna screw this up, right?" But at the same time, I was completely head-over-heels for my sweet angel, Ryan. And with the gift of my sweet little Ryan came the gift of grace for all the nimrod moments I've had as a mother... because I am not deserving of such wonderful little ones!
The last couple of nights as the kids played in the backyard, I just couldn't help but let my mind wander to the past few summers. Ryan's first birthday he had a stomach flu that he got from his Daddy. Oh, the memories! Blech! Nothing like projectiling all over the place right before you go swimming to start your second year of life. Oh, and the cake... Eric's fabulous Nana made the yummiest cake. Ryan hadn't dropped a barf for 24 hours. Right after the pics of the kiddo chowing on the cake, there it was again. I felt SO awful for letting him have cake! The second birthday we spent at Epcot with the Fairfield band, and that was so fun! The next week we spent in Galveston with family. Such a blast! That was also the beginning of noting all the missed milestones. Ryan's third birthday, we had just moved to Groesbeck on faith (literally... long story) and had a great time watching Ryan play in a $6 pool, his gift from us that year. The images of Ryan's sweet face playing in the pool got me through the six tries it took to get my spinal placed for the birth of his brother three days later. The next year we went along for the ride to state solo and ensemble in San Marcos... quite a ride to just get to swim and see Daddy a little on his birthday. Last year, I'm pretty sure involved playing in the backyard, and I know Grammy and Grampy came to see the boys.
There are so many things we thought would be different, and birthdays are no exception. Both Eric's and my family were very family-birthday oriented, and each birthday was celebrated witha favorite meal, gifts, that kind of thing. I think Eric got to have at least one birthday party as a kid. The theme between the families, though, is making sure we had fun and made that person feel special in whatever way they could, even with a limited budget. For our kids I've given precisely one birthday party, and that was because I felt like the princess should have a princess tea party. Honestly, I'm not good at social gatherings, so the party thing isn't a big deal. It's actually pretty stressful for me, being the non-socialite and awkward person I am.
You know what the weird part is for me?
Not completely throwing the schedule and doing whatever he wants all day long. With my Mom, it was very free-form, do whatever you want. We didn't do the formal party thing (and by "formal" I mean the regular kid party), usually because I was awkward then too, and was usually out of town for summers. My birthday being in June plus being out of town didn't really set the stage for such things. But I want my little guy to feel special on his birthday.
Like everything else, I have to figure out where he is, and start there.
So instead of a picnic, a trip to the park, an outing to shop, we've kept the best schedule we could so he'd enjoy himself... because when he's melting down, he's not enjoying himself. We have a tradition of donuts on the morning of your birthday, so I got up (after only two hours of sleep... apparently Maelynn's molars didn't get the memo that I was on my own today) at six-thirty and we were out getting donuts by 7:30 ish. I relaxed lunch, let him take only the nap he wanted, then let him get up and watch Cars while the littles slept, and he wants pizza for dinner, then to play in the sprinkler in the yard. Oh, and I asked if he wanted cake or brownies, and he asked for brownies. Oh, and no candles. Candles and butterflies... that'd be hell for Ryan. For me, a school bus ride to a pep rally... but I digress.
We've also kept working a little on his pincher grasp with lacing cards, played with playdough, and we've had ipad time but only within the 15 minute boundary. How mean, making him stick to these things!
In reality, it would be mean to break routine. One thing the movie "Rain Man" got close to right was routine. It's far better for him, and happier for him... to have routine. That's something I've had to learn. Although I need a break from routine, to Ryan and so many other ASD kids, routine is the best break. The best relief and rest comes when they know what to expect. Yes, we do things for fun. We CAN do whatever we want, but what's best, right, or fitting is a different thing. I *could* let him go nuts on the ipad, completely throw out the rules and let him stim like crazy on whatever he wants, but I've seen what happens. He winds up confused, melting down, screaming, shaking, so confused. We can do things out of routine, but it's always a gamble.
This weekend we'll celebrate both of the guyzos' birthdays with Grammy and Grampy, but for today? We're gonna have pizza, milk, brownies and ice cream. Go out, play, have a bath, read stories, and go to bed. Because no matter what sounds like fun to me, I know that it's his birthday, and the goal is for him to have a joyous day!
Happy birthday, little Ryan. I love being your mommy, and I'm so grateful to have you as my son!
Ryan's due date was actually June 9, but a sonogram the Friday before revealed that he was frank breech. Eric drove me from Fort Worth to Denton (made sense back then, trust me) that Monday morning and we were both nervous, just about ready to explode. Or maybe it was me that was about to explode! A grackle hit the windshield of our Camry and I started laughing so hard I couldn't stop, and I don't think I stopped until we got to the hospital, where I promptly shared the story with the nurses who all thought I was nuts. We were just going to the hospital to have Ryan turned, and we thought we'd go home and wait for me to go into labor. It sounded so easy! They'd just "massage" Ryan until he flipped himself over! Sounds great, huh! I mean, what pregnant woman doesn't hear the "m" word and think "oh, sure... I can totally do that!"
I'm here to tell ya, sister... that was no "massage". I think my husband's hand is permanently cramped from me clamping down on it while the doctor attempted to shove his hands through my skin.
Yeah, don't try that. I've talked to exactly one person who it worked for.
So, with my doctor heading out of the country on a medical mission trip for ten days the next day, we decided we'd either induce or have a section. The options weighed, just before noon on May 30, 2005 I became a member of the zipper club and we had our first amazing, chubby, perfect-looking baby boy. What an amazing day. I still remember the sick-to-my-stomach, oh-my-word-I'm-the-mommy feeling that came and went in between doses of demerol. I was excited and so happy to be a mother finally, and it was all so surreal, but at the same time there was this strange desire to call for the nurse, and tell her, "There must be some mistake. I know I'm a grownup, married woman, but holy COW am I ever not ready for this! I'm so not good enough to receive this. You know I'm gonna screw this up, right?" But at the same time, I was completely head-over-heels for my sweet angel, Ryan. And with the gift of my sweet little Ryan came the gift of grace for all the nimrod moments I've had as a mother... because I am not deserving of such wonderful little ones!
The last couple of nights as the kids played in the backyard, I just couldn't help but let my mind wander to the past few summers. Ryan's first birthday he had a stomach flu that he got from his Daddy. Oh, the memories! Blech! Nothing like projectiling all over the place right before you go swimming to start your second year of life. Oh, and the cake... Eric's fabulous Nana made the yummiest cake. Ryan hadn't dropped a barf for 24 hours. Right after the pics of the kiddo chowing on the cake, there it was again. I felt SO awful for letting him have cake! The second birthday we spent at Epcot with the Fairfield band, and that was so fun! The next week we spent in Galveston with family. Such a blast! That was also the beginning of noting all the missed milestones. Ryan's third birthday, we had just moved to Groesbeck on faith (literally... long story) and had a great time watching Ryan play in a $6 pool, his gift from us that year. The images of Ryan's sweet face playing in the pool got me through the six tries it took to get my spinal placed for the birth of his brother three days later. The next year we went along for the ride to state solo and ensemble in San Marcos... quite a ride to just get to swim and see Daddy a little on his birthday. Last year, I'm pretty sure involved playing in the backyard, and I know Grammy and Grampy came to see the boys.
There are so many things we thought would be different, and birthdays are no exception. Both Eric's and my family were very family-birthday oriented, and each birthday was celebrated witha favorite meal, gifts, that kind of thing. I think Eric got to have at least one birthday party as a kid. The theme between the families, though, is making sure we had fun and made that person feel special in whatever way they could, even with a limited budget. For our kids I've given precisely one birthday party, and that was because I felt like the princess should have a princess tea party. Honestly, I'm not good at social gatherings, so the party thing isn't a big deal. It's actually pretty stressful for me, being the non-socialite and awkward person I am.
You know what the weird part is for me?
Not completely throwing the schedule and doing whatever he wants all day long. With my Mom, it was very free-form, do whatever you want. We didn't do the formal party thing (and by "formal" I mean the regular kid party), usually because I was awkward then too, and was usually out of town for summers. My birthday being in June plus being out of town didn't really set the stage for such things. But I want my little guy to feel special on his birthday.
Like everything else, I have to figure out where he is, and start there.
So instead of a picnic, a trip to the park, an outing to shop, we've kept the best schedule we could so he'd enjoy himself... because when he's melting down, he's not enjoying himself. We have a tradition of donuts on the morning of your birthday, so I got up (after only two hours of sleep... apparently Maelynn's molars didn't get the memo that I was on my own today) at six-thirty and we were out getting donuts by 7:30 ish. I relaxed lunch, let him take only the nap he wanted, then let him get up and watch Cars while the littles slept, and he wants pizza for dinner, then to play in the sprinkler in the yard. Oh, and I asked if he wanted cake or brownies, and he asked for brownies. Oh, and no candles. Candles and butterflies... that'd be hell for Ryan. For me, a school bus ride to a pep rally... but I digress.
We've also kept working a little on his pincher grasp with lacing cards, played with playdough, and we've had ipad time but only within the 15 minute boundary. How mean, making him stick to these things!
In reality, it would be mean to break routine. One thing the movie "Rain Man" got close to right was routine. It's far better for him, and happier for him... to have routine. That's something I've had to learn. Although I need a break from routine, to Ryan and so many other ASD kids, routine is the best break. The best relief and rest comes when they know what to expect. Yes, we do things for fun. We CAN do whatever we want, but what's best, right, or fitting is a different thing. I *could* let him go nuts on the ipad, completely throw out the rules and let him stim like crazy on whatever he wants, but I've seen what happens. He winds up confused, melting down, screaming, shaking, so confused. We can do things out of routine, but it's always a gamble.
This weekend we'll celebrate both of the guyzos' birthdays with Grammy and Grampy, but for today? We're gonna have pizza, milk, brownies and ice cream. Go out, play, have a bath, read stories, and go to bed. Because no matter what sounds like fun to me, I know that it's his birthday, and the goal is for him to have a joyous day!
Happy birthday, little Ryan. I love being your mommy, and I'm so grateful to have you as my son!
Friday, May 27, 2011
M'STAA!
Ryan gave be a suh-weet end of school present today! When I turned off the main drag onto the street that takes us home, he didn't scream!
We started taking Ryan to the Baylor Center for Autism in Feburary, where Miss Staci worked with him once a week for an hour. He was either crazy about her, or her iphone, or the attention solely on him for a whole hour, we're not sure. But what I do know is that he asks to "go see Miss Staci" about fifty times a day, if not more. He asks his teacher at school and the aids over and over. Every day when I pick him up he asks to go see Miss Staci. I tell him that we're going home to enjoy our house and each other, go outside, watch Thomas, whatever... but nothing doing. Lots of times he's screaming all the way into the backseat of the van. When I climb in through the back to buckle his seatbelt, I usually can get him to chill out... at least stop yelling. Even if he's totally calm, by the time I get reach the place where we either turn left to go to Waco or right to go home, Ryan has a little fit when I turn right. He yells from the backseat "M'STAA STAA STAA STAA STAA Stuuuuh" which is his way of saying "MISS STACI!" over and over.
For months, he's done this. Ryan doesn't understand the concept of the semester ending, Miss Staci getting a break, or graduating. I've attempted to explain time and time again that Miss Staci probably went to see her mama too, since school's out. I'm a big believer in not saying the word "no" all the time, and finding positive alternative ways to say "no". But when I say "later", I'm half lying. If I say "not right now, " I'm essentially saying later. He has asked so many times just today, just since noon. Matter of fact, it was the first thing he said to me this morning. Then, of course, there's the ride home from school. I tried when we were actually going to see the beloved therapist to let him sit up front (in a booster, with the seatbelt, no airbag... don't judge) only when we were going to Waco. If we were going home, he got in the back. For Ryan, riding up front is HUGE. I always had a snack ready, the same thing... a cereal bar and a juice pouch. If we were going home, he just got in the back and I buckled him in, as usual. I thought all this might make it extra cool, and help him separate regular class days from therapy days.
Instead, they just helped him know immediately that he wasn't going where he wanted. Expedited the whole process! Why wait? Start screaming as soon as you see the side door of the van open! Thanks Mom! You think of everything.
*sigh*
So, for a few months, every day he gets upset at the same intersection. I brace myself as I round the corner, even remind him again where we're going. Even Richie says "Issok, Wyan! Shhh!" as helpfully and caring as a toddler can. When I lose myself in thought about the evening, which happens, he nearly shocks me out of my skin. Even though I know it's coming! Then I feel extra dumb for being shocked.
But today? Today we rounded the corner on the last day of school, and...
drumroll, please...
silence.
Thanks, buddy.
No worries, though... by the time we got home and he was getting out of the van (which can take forever), he was asking for Miss Staci again. "You want to go see Miss Staci!" he says. "Sorry, buddy. Miss Staci isn't working today. But I am very proud of you for the great day you've had, and we're gonna go in and watch Nemo."
Then he proceeded to bug me about going to see Miss Staci until bedtime. No goodnight, no nothin' but Miss Staci.
Don't get me wrong... I am fully aware of how blessed we are to have therapy we can afford, and with a qualified, super-sweet and caring individual who really loves Ryan and thinks he's awesome! Yet again, the Lord has met our needs! To tell the truth, a lot of the reason it's hard to listen to him ask over and over is that I can't give him Miss Staci all the time. I can guarantee that I will work our budget to where we can go, and will keep our schedule to where we can make all his appointments. I can set him up for success, carrying him to, through, and off the elevator. I can listen to what she's doing so I can reinforce at home. But I can't take him to Waco to see Miss Staci every time he wants to go. Even if I could, I shouldn't just give him what he wants all the time, just like we can't give him other things he wants all the time. The thing that bothers me the most, though, isn't that.
No, the thing that bothers me is that I wish he was asking for me.
On the rare occasions Ryan has asked for me, you couldn't have kept us apart with razor wire, dynamite, rabid dogs, anything. My boy asks for me? My boy gets me. He asks to snuggle me every night when it's time for bed, which is his way of saying "I wish you were rocking me instead of my sister" and he gets to weasel in around her for a quick snuggle-huggle before bed. Doesn't he know I know him better? Doesn't he know I've been there for him all his life? I'd give up anything for my kids. Doesn't he know that? Haven't I shown that? Well, yes, and I will continue. Because I know, also, that Ryan does love me, and it doesn't matter what he does or if he ever tells me he loves me again... he's still my boy, and I'm still his Mommy.
After all, isn't that what God does for us? We go about our lives every day, asking for this and that. Freaking smooth out about what this person said, that person thought. What everyone in public thinks about my parenting, my kids' behavior. I go through so much agony over this. Am I doing to little? Too much? What will they think if I go? If I don't?
And the whole time, He's thinking...
Doesn't she know I love her?
Doesn't she know I know her better than anyone?
Doesn't she know I've done everything for her? Given it all for her?
Doesn't she remember I've been there for her even before she was born?
He's likely wishing I'd stop worrying about and asking for the approval of people who don't matter. He's wishing I'd realize and rest in His love and provision. Because whatever happens successes, failures, pride, fears, no matter how many times I drop the ball, or look around instead of up for approval, I'm still His girl and He's still my Daddy.
And I'm so grateful.
We started taking Ryan to the Baylor Center for Autism in Feburary, where Miss Staci worked with him once a week for an hour. He was either crazy about her, or her iphone, or the attention solely on him for a whole hour, we're not sure. But what I do know is that he asks to "go see Miss Staci" about fifty times a day, if not more. He asks his teacher at school and the aids over and over. Every day when I pick him up he asks to go see Miss Staci. I tell him that we're going home to enjoy our house and each other, go outside, watch Thomas, whatever... but nothing doing. Lots of times he's screaming all the way into the backseat of the van. When I climb in through the back to buckle his seatbelt, I usually can get him to chill out... at least stop yelling. Even if he's totally calm, by the time I get reach the place where we either turn left to go to Waco or right to go home, Ryan has a little fit when I turn right. He yells from the backseat "M'STAA STAA STAA STAA STAA Stuuuuh" which is his way of saying "MISS STACI!" over and over.
For months, he's done this. Ryan doesn't understand the concept of the semester ending, Miss Staci getting a break, or graduating. I've attempted to explain time and time again that Miss Staci probably went to see her mama too, since school's out. I'm a big believer in not saying the word "no" all the time, and finding positive alternative ways to say "no". But when I say "later", I'm half lying. If I say "not right now, " I'm essentially saying later. He has asked so many times just today, just since noon. Matter of fact, it was the first thing he said to me this morning. Then, of course, there's the ride home from school. I tried when we were actually going to see the beloved therapist to let him sit up front (in a booster, with the seatbelt, no airbag... don't judge) only when we were going to Waco. If we were going home, he got in the back. For Ryan, riding up front is HUGE. I always had a snack ready, the same thing... a cereal bar and a juice pouch. If we were going home, he just got in the back and I buckled him in, as usual. I thought all this might make it extra cool, and help him separate regular class days from therapy days.
Instead, they just helped him know immediately that he wasn't going where he wanted. Expedited the whole process! Why wait? Start screaming as soon as you see the side door of the van open! Thanks Mom! You think of everything.
*sigh*
So, for a few months, every day he gets upset at the same intersection. I brace myself as I round the corner, even remind him again where we're going. Even Richie says "Issok, Wyan! Shhh!" as helpfully and caring as a toddler can. When I lose myself in thought about the evening, which happens, he nearly shocks me out of my skin. Even though I know it's coming! Then I feel extra dumb for being shocked.
But today? Today we rounded the corner on the last day of school, and...
drumroll, please...
silence.
Thanks, buddy.
No worries, though... by the time we got home and he was getting out of the van (which can take forever), he was asking for Miss Staci again. "You want to go see Miss Staci!" he says. "Sorry, buddy. Miss Staci isn't working today. But I am very proud of you for the great day you've had, and we're gonna go in and watch Nemo."
Then he proceeded to bug me about going to see Miss Staci until bedtime. No goodnight, no nothin' but Miss Staci.
Don't get me wrong... I am fully aware of how blessed we are to have therapy we can afford, and with a qualified, super-sweet and caring individual who really loves Ryan and thinks he's awesome! Yet again, the Lord has met our needs! To tell the truth, a lot of the reason it's hard to listen to him ask over and over is that I can't give him Miss Staci all the time. I can guarantee that I will work our budget to where we can go, and will keep our schedule to where we can make all his appointments. I can set him up for success, carrying him to, through, and off the elevator. I can listen to what she's doing so I can reinforce at home. But I can't take him to Waco to see Miss Staci every time he wants to go. Even if I could, I shouldn't just give him what he wants all the time, just like we can't give him other things he wants all the time. The thing that bothers me the most, though, isn't that.
No, the thing that bothers me is that I wish he was asking for me.
On the rare occasions Ryan has asked for me, you couldn't have kept us apart with razor wire, dynamite, rabid dogs, anything. My boy asks for me? My boy gets me. He asks to snuggle me every night when it's time for bed, which is his way of saying "I wish you were rocking me instead of my sister" and he gets to weasel in around her for a quick snuggle-huggle before bed. Doesn't he know I know him better? Doesn't he know I've been there for him all his life? I'd give up anything for my kids. Doesn't he know that? Haven't I shown that? Well, yes, and I will continue. Because I know, also, that Ryan does love me, and it doesn't matter what he does or if he ever tells me he loves me again... he's still my boy, and I'm still his Mommy.
After all, isn't that what God does for us? We go about our lives every day, asking for this and that. Freaking smooth out about what this person said, that person thought. What everyone in public thinks about my parenting, my kids' behavior. I go through so much agony over this. Am I doing to little? Too much? What will they think if I go? If I don't?
And the whole time, He's thinking...
Doesn't she know I love her?
Doesn't she know I know her better than anyone?
Doesn't she know I've done everything for her? Given it all for her?
Doesn't she remember I've been there for her even before she was born?
He's likely wishing I'd stop worrying about and asking for the approval of people who don't matter. He's wishing I'd realize and rest in His love and provision. Because whatever happens successes, failures, pride, fears, no matter how many times I drop the ball, or look around instead of up for approval, I'm still His girl and He's still my Daddy.
And I'm so grateful.
Wednesday, May 25, 2011
Privileged
Little known facts about yours truly...
I've only seen American Idol one time, and that was when Kelly Clarkson was on.
I have a strange thing about movies... I really don't like to sit and watch a movie, especially one I haven't seen. Definitely don't like drama, tear-jerkers, action... well, you get it. All that leaves us with is Dreamworks and Disney.
I only dated one man who didn't play a low brass instrument at some point in his life, and he was a coach!
I am a horrible housekeeper and a worse carkeeper.
I wasn't always a horrible carkeeper. Once upon a time, I spent Friday nights cleaning my beloved Camaro. Now, you could eat off my van floor. Really! A little popcorn, couple of fries, a chicken nugget...
When I go back and look at these, I can reconcile most of them quickly. Haven't seen American Idol because I can't stand to watch people embarrass themselves. Movies tend to either waste my time or hurt my heart... I get so wrapped up in it, it's just not worth it. I have enough drama in my life, thank you. I love the low brass player mentality... goof off, but serious. Then I married one! Those are simple.
My house isn't a complete wreck. Not all the time. There are toys out a lot, and the walls have nothing hanging on them where there wasn't already a nail when we moved in. It's not that I don't care. It's not that I love pale green paint and don't want my daughter's room to be pink. It's just not top priority.
What is top priority? Doing the work the Lord has given to me. Making sure my family is healthy, clean, safe, and happy.
Hello, loaded sentence. It's easy to rattle off the things I want for my family, and entirely another thing to carry them out. I'm pretty sure at least one how-to book exists for each one. I'm a firm believer in doing what is before you. Take what you're given and do something with it. Do what is set before you, and do it with all your heart. You know what? That means I'm to fold socks, make beds, vaccuum, do dishes, and sweep to the glory of God. Every time my husband goes to get a clean pair of pants and they're hanging there ready to go, although he may not say it or realize it, that's one more way he knows I care. Whether or not he or the kids ever thank me for it, it's still my job. Clean, though mundane, isn't so hard.
Healthy, happy and safe? This is where I'm hit. This is where it's killing me to watch the footage of these tornado-ravaged areas. One couple was looking for a 15 month old baby boy. I looked up, and my indescribably beautiful 15 month old toddles across the living room, chewing her binky and dragging her lovey. Another couple is looking for a lost three year old. Richie, almost three, is playing across the living room with the ipad. Both kids are oblivious to the disaster... they're safe in their home, playing with their stuff. Then I think about my oldest, my dear Ryan.
Oh my word. There must be autistic children in all these places, completely lost even with their parents.
Last night I was up talking my Mom through a storm. She's a big girl, I know, and at 58 she's seen a lot of weather. But there's something about being able to hear each other's voices that calms us both. Once I could see on the radar on our computer six hours away that she was in the clear, I said good night, always reminding her that I love her. Then I shut the computer and laid there with my heart pounding. All those children, all those people with no home.
Healthy, safe and happy are words we struggle with here. We work on strategies to get Ryan to eat better, learn to communicate, and basically to get through the evening without screaming. Words like "perseverate" and "stim" weaseled their way into our vocabulary, somewhat butting out words like "spontaneous". We have adapted so many things from picture schedule to family schedule to how we do things and where we can go without realizing what we've adapted. But having this constant environment ripped away would crush our little guy. Something as simple as running out of milk can cause a meltdown here. Not because he wants it... because he *needs* it as part of routine. Dinner equals milk. Lunch equals the same sandwich, chips, fruit snacks, and juice pouch. There are times when we can throw a curveball and he's cool. But there are equally if not more times when it's screaming and shaking and crying over something like the wrong kind of pizza.
We live in a country where we can go to church, or not. We can have one or fifty babies, or none. We can communicate with our country's leaders, or not. My word, we even have a "right" to a free public education! Our son's needs have to be met in the classroom (within reason, of course). In America these are rights, and I am more than grateful! I've never been more grateful than I am as the mother of a special needs child. This hit me when I read "Dancing With Max" by Emily Colson. She writes of a trip she made with her father to a "therapy and rehabilitation center built by Christian missionaries to serve children with disabilities". As they toured, Ms. Colson asked the director of the center where the autistic children were. Her answer still chills my blood.
"They have children with autism," said the translator. "But in this community, they don't survive."
At first, I thought this couldn't be. Overdramatization. But no, if you think about it, you can't lock a hut or a tent to keep a child from wandering. In other cultures, a woman is to obey a man at all cost, and this could mean neglect of a child, or worse. Simply the screaming fits and shaking... oh my, without help to know what is going on, I can't imagine. I spend my days combing the internet, the bible, and my mind for help for all of us. For encouragement and knowledge, for ideas for therapy, discipline, anything to help not just live through or avoid fits, but to unlock Ryan's potential!!! He is great, just like Mae and Richie! Sweet, loving, silly, and just plain amazing. And it's a rollercoaster. We have meltdowns over something he wants, or time to give up the ipad, then we have a moment where he referred to himself as "I" instead of "you" and we all practically jump up and down for him! Even Richie says things like "look at Ryan go!" and "Yay Ryan!"
So my van's a mess. My yard gets mowed, by me, every two weeks whether it needs it or not. I cut my own hair, we use cloth diapers, and keep the house pretty toasty during the day to save money. There are likely dishes in my sink, toys on the floor, and laundry in the hampers. The walls are the same color they were when we moved in, and I've hung very little on the walls. I'm not proud of these things, some are even on the list of things to improve... but they're not at the tipppy-top of the desire chain... or the priority.
At the top is hearing Ryan ask "you want to snuggle mommy?"
At the top is dunking "black tooties" (oreos) with Richie and Ryan, and laughing at Mae as she smears them in her hair.
At the top is smiling as Ryan begins to repeat after his Daddy with Richie when we pray as a family.
At the top is knowing that they won't remember what color my walls were, and if they did, they'd probably laugh anyway. It's knowing that Nanny was right when she'd tell me "I'll spend time with you now. The work will be there when you're gone." Among the most cherished memories I have is knowing I was able to return the favor.
Yes, there is a certain amount of stuff I have to do to keep my house running, and I do my best. I wish my daughter's room was the three perfect shades I'd picked, and there are lots of things we'd always dreamed we'd do but shouldn't for safety, money, or just general wear-and-tear on Ryan. We are thankful, however, to be living in our home, together, with the privilege of having the right to take care of and bring up our children as we choose, keeping them as safe, healthy, and happy as we know how.
Will you join me in continuing to pray for not only the families affected in the recent disasters, but also for the special needs families who have had their routines, comforts, and safety zones yanked out from under them?
Because it is but by His grace that I sit under my roof, in my air-conditioned living room, with the lights on, across from my husband, and the kids safely in bed.
Thank You, Lord! A thousand times, thank You!
I've only seen American Idol one time, and that was when Kelly Clarkson was on.
I have a strange thing about movies... I really don't like to sit and watch a movie, especially one I haven't seen. Definitely don't like drama, tear-jerkers, action... well, you get it. All that leaves us with is Dreamworks and Disney.
I only dated one man who didn't play a low brass instrument at some point in his life, and he was a coach!
I am a horrible housekeeper and a worse carkeeper.
I wasn't always a horrible carkeeper. Once upon a time, I spent Friday nights cleaning my beloved Camaro. Now, you could eat off my van floor. Really! A little popcorn, couple of fries, a chicken nugget...
When I go back and look at these, I can reconcile most of them quickly. Haven't seen American Idol because I can't stand to watch people embarrass themselves. Movies tend to either waste my time or hurt my heart... I get so wrapped up in it, it's just not worth it. I have enough drama in my life, thank you. I love the low brass player mentality... goof off, but serious. Then I married one! Those are simple.
My house isn't a complete wreck. Not all the time. There are toys out a lot, and the walls have nothing hanging on them where there wasn't already a nail when we moved in. It's not that I don't care. It's not that I love pale green paint and don't want my daughter's room to be pink. It's just not top priority.
What is top priority? Doing the work the Lord has given to me. Making sure my family is healthy, clean, safe, and happy.
Hello, loaded sentence. It's easy to rattle off the things I want for my family, and entirely another thing to carry them out. I'm pretty sure at least one how-to book exists for each one. I'm a firm believer in doing what is before you. Take what you're given and do something with it. Do what is set before you, and do it with all your heart. You know what? That means I'm to fold socks, make beds, vaccuum, do dishes, and sweep to the glory of God. Every time my husband goes to get a clean pair of pants and they're hanging there ready to go, although he may not say it or realize it, that's one more way he knows I care. Whether or not he or the kids ever thank me for it, it's still my job. Clean, though mundane, isn't so hard.
Healthy, happy and safe? This is where I'm hit. This is where it's killing me to watch the footage of these tornado-ravaged areas. One couple was looking for a 15 month old baby boy. I looked up, and my indescribably beautiful 15 month old toddles across the living room, chewing her binky and dragging her lovey. Another couple is looking for a lost three year old. Richie, almost three, is playing across the living room with the ipad. Both kids are oblivious to the disaster... they're safe in their home, playing with their stuff. Then I think about my oldest, my dear Ryan.
Oh my word. There must be autistic children in all these places, completely lost even with their parents.
Last night I was up talking my Mom through a storm. She's a big girl, I know, and at 58 she's seen a lot of weather. But there's something about being able to hear each other's voices that calms us both. Once I could see on the radar on our computer six hours away that she was in the clear, I said good night, always reminding her that I love her. Then I shut the computer and laid there with my heart pounding. All those children, all those people with no home.
Healthy, safe and happy are words we struggle with here. We work on strategies to get Ryan to eat better, learn to communicate, and basically to get through the evening without screaming. Words like "perseverate" and "stim" weaseled their way into our vocabulary, somewhat butting out words like "spontaneous". We have adapted so many things from picture schedule to family schedule to how we do things and where we can go without realizing what we've adapted. But having this constant environment ripped away would crush our little guy. Something as simple as running out of milk can cause a meltdown here. Not because he wants it... because he *needs* it as part of routine. Dinner equals milk. Lunch equals the same sandwich, chips, fruit snacks, and juice pouch. There are times when we can throw a curveball and he's cool. But there are equally if not more times when it's screaming and shaking and crying over something like the wrong kind of pizza.
We live in a country where we can go to church, or not. We can have one or fifty babies, or none. We can communicate with our country's leaders, or not. My word, we even have a "right" to a free public education! Our son's needs have to be met in the classroom (within reason, of course). In America these are rights, and I am more than grateful! I've never been more grateful than I am as the mother of a special needs child. This hit me when I read "Dancing With Max" by Emily Colson. She writes of a trip she made with her father to a "therapy and rehabilitation center built by Christian missionaries to serve children with disabilities". As they toured, Ms. Colson asked the director of the center where the autistic children were. Her answer still chills my blood.
"They have children with autism," said the translator. "But in this community, they don't survive."
At first, I thought this couldn't be. Overdramatization. But no, if you think about it, you can't lock a hut or a tent to keep a child from wandering. In other cultures, a woman is to obey a man at all cost, and this could mean neglect of a child, or worse. Simply the screaming fits and shaking... oh my, without help to know what is going on, I can't imagine. I spend my days combing the internet, the bible, and my mind for help for all of us. For encouragement and knowledge, for ideas for therapy, discipline, anything to help not just live through or avoid fits, but to unlock Ryan's potential!!! He is great, just like Mae and Richie! Sweet, loving, silly, and just plain amazing. And it's a rollercoaster. We have meltdowns over something he wants, or time to give up the ipad, then we have a moment where he referred to himself as "I" instead of "you" and we all practically jump up and down for him! Even Richie says things like "look at Ryan go!" and "Yay Ryan!"
So my van's a mess. My yard gets mowed, by me, every two weeks whether it needs it or not. I cut my own hair, we use cloth diapers, and keep the house pretty toasty during the day to save money. There are likely dishes in my sink, toys on the floor, and laundry in the hampers. The walls are the same color they were when we moved in, and I've hung very little on the walls. I'm not proud of these things, some are even on the list of things to improve... but they're not at the tipppy-top of the desire chain... or the priority.
At the top is hearing Ryan ask "you want to snuggle mommy?"
At the top is dunking "black tooties" (oreos) with Richie and Ryan, and laughing at Mae as she smears them in her hair.
At the top is smiling as Ryan begins to repeat after his Daddy with Richie when we pray as a family.
At the top is knowing that they won't remember what color my walls were, and if they did, they'd probably laugh anyway. It's knowing that Nanny was right when she'd tell me "I'll spend time with you now. The work will be there when you're gone." Among the most cherished memories I have is knowing I was able to return the favor.
Yes, there is a certain amount of stuff I have to do to keep my house running, and I do my best. I wish my daughter's room was the three perfect shades I'd picked, and there are lots of things we'd always dreamed we'd do but shouldn't for safety, money, or just general wear-and-tear on Ryan. We are thankful, however, to be living in our home, together, with the privilege of having the right to take care of and bring up our children as we choose, keeping them as safe, healthy, and happy as we know how.
Will you join me in continuing to pray for not only the families affected in the recent disasters, but also for the special needs families who have had their routines, comforts, and safety zones yanked out from under them?
Because it is but by His grace that I sit under my roof, in my air-conditioned living room, with the lights on, across from my husband, and the kids safely in bed.
Thank You, Lord! A thousand times, thank You!
Thursday, May 19, 2011
Poor Elmo...
Courage does not always roar. Sometimes it is a quiet voice at the end of the day, saying, I will try again tomorrow. ~ Mary Anne Radmacher
I needed this.
Lately, as you know, things have been changing in our lives. With Ryan getting bigger and older, things must change. Things we've clung to even without realizing it. There are things that, although we're typically-abled grownups, it's like pulling teeth to change for Eric and I. Some things have changed, too, and not for the better. Here's where I have a confession.
I'm having difficulties with potty training.
No, not me... I've been good since before I was two. No thanks to anyone but my Granny (Nanny's mother, my great-grandmother), who had a fabulous knack for that and a lot of things. I think she potty trained everyone from Nanny to me, and probably some neighborhood kids in there too! This difficulty is one of the things people don't always realize is on the ASD menu. Funny thing about that menu... great selection, but you don't make the choices. It's a ginormous grab-bag of traits, problems, difficulties and gifts. Not everyone even gets the same number of them.
One of our menu items is the potty mess. I must say that we don't have it NEARLY to the degree that a lot of people do. Ryan usually does very well in routine. We had been doing so very well for a long time, and just in the last few weeks we've seen a bit of regression. This is one of the things about autism that I have the hardest time dealing with. We think he stims on the feeling of it... I must emphasize "think". No idea if that's really what the deal is. He has a tendency to use this as something to exert control over when things are changing, it seems. And oh, are we ever tired of it! Did I mention that I have a nearly 3 year old and a 15 month old, too?! Maybe that's why I'm not scared of cloth diapers. I've cleaned so many diaper-used pairs of underoos and pants I'm nearing pro-level on getting smells out of stuff. Yeah, cloth diapers are totally not a problem... and they save us enough money to make sure Ryan gets to therapy and back, and we still get to eat.
With two in diapers and one prone to accidents at times, you'd think I'd be the first in line to start potty training Richie. In reality, the thought makes me tired. The cutesie training pants ads, the neat little videos and stuff... part of me wants to think it's cute and cool and try to get into it, and the other part of me wants to throw myself on the bed and cry. We have been working on this since right before we left Fairfield. That would be about three years. Three years of poopy pull-ups, underwear, pants, bribes, even pleading with Ryan to not poop on Elmo's face, conveniently located on the little booty of his underwear. Nothing doing. Oh yes, he was doing famously for as long as we stayed in routine for a long time, but I think... no, I know... Ryan knows there's something afoot. He can feel the changes if nothing else.
We really don't know why. We really don't know if it's something he chooses or if he just doesn't get it, or if there's something about it that he kinda stims on, in an odd way. It is, however, one of the biggest kicks in the gut of the whole autism thing. It's this kind of thing that makes us panic. In that one instant, that one flash of light, you see his whole life flash before you. It's in that instant that it's tempting to try to wrest control.
But the more I try to control, the more I get angry when I realize there's no hope of control. So I have to practice the heart-change of wanting to instead understand, meet Ryan where he is, and try to go from there. I have to be okay with the prospect of potty training being an ongoing thing for a long, long time.
I also have to be okay with... even find joy with... the fact that there are so many things that I have to face by myself. When I say "by myself" or "alone", I mean time with no other adults with skin on in the house. No one to say, "you go sit down, I'll take this one". No one to play with the littles... or at least keep them out of trouble... while I go through the whole "where do we put our poop, Ryan?" think for the bajillionth time. Yes, my Eric and I are here together, but there are times when he is not (although Jesus always is... and without that, oh my...).
Tonight I was listening to my husband read "Oh, The Places You'll Go" by Dr. Seuss to the boys before bed, and these words floated over the laptop screen and into my ears,
All Alone!
Whether you like it or not,
Alone will be something you'll be quite a lot.
And when you're there, there's a very good chance
you'll meet things that scare you right out of your pants.
There are some, down the road between hither and yon,
that scare you so much you won't want to go on.
Yep, there are days that I'm scared so much I'm not sure I can go on. That something has to give. Something simply must change or improve, even if that something is me. There are moments like this, for sure. And in these moments, these days of dread and not being sure what to do next, there is always something. Something like this poetic little book, a song, or a verse that helps me just go ahead and cry. Get it out there, admit that I'm not able, without His help, to keep pedaling. Sometimes it's something cool, like Ryan at bedtime last night, wriggling his arm out of the covers of the top bunk and pulling my arm over so that he could lay his head on it, then whispering in his sweet, robotic way, "I love you mommy." Or maybe it's Richie shoving one of his stuffed animals at me, insisting that I sleep with it tonight. Other times the something comes in the form of encouragement from someone, or from my bible study time. But it is always there, just when I need it.
This morning, my bible study happened to be in Joshua, right at the time when it's time for the now-nation of Israel to cross the Jordan river on their way to Jericho. God told Joshua to tell the priests who bore the ark of the covenant, "When you come to the brink of the waters of the Jordan, you shall stand still in the Jordan." I grew up in eastern Oklahoma, and one of my favorite memories of childhood is swimming and fishing in the rivers. I cannot imagine someone telling me to just climb in and stand still. It'll stand still with you, I promise. Oh, I can imagine them telling me that all right. I can also imagine laughing in their faces!
But they did, and God held the waters back for the whole nation of Israel to pass through.
Sometimes, being "strong and courageous" as Joshua was commanded so very many times has very little to do with action. Sometimes standing still and being obedient in being still is the best thing we can do. Clinging tight to what we know to be true, even when it may not look like even we thought it should look, and carrying on in His name and for His sake in the face of the unknown is the not so popular side of courage. Believing hard on the hope we profess in Christ is at its most powerful when the world knows they don't want to play the hand you've been dealt. When it's three o'clock in the morning and you've been up and down over and over with the sick one, or the one who can't sleep (never will I forget that many ASD kids can't... mine can and I am forever grateful), or you're heating up that same pizza, cleaning up that same mess, scrubbing out that same underwear, watching that same video, remember that although no one with skin on sees, they also cannot do what you do the way you do it. No one can. No one can be Mama but Mama.
Because on some level, they know. They know and their siblings know. They know you have seen them at their absolute worst, and they see the grace, mercy, and love, and the faithfullness that your actions show. And since they see these things, it makes it so much more powerful when they hear you whisper, every night, with a hug and a prayer...
God has big plans for you, baby. God's gonna use you, and I can't wait to watch.
Because He does, and He is. And I can't wait to watch. So I will try again tomorrow.
I needed this.
Lately, as you know, things have been changing in our lives. With Ryan getting bigger and older, things must change. Things we've clung to even without realizing it. There are things that, although we're typically-abled grownups, it's like pulling teeth to change for Eric and I. Some things have changed, too, and not for the better. Here's where I have a confession.
I'm having difficulties with potty training.
No, not me... I've been good since before I was two. No thanks to anyone but my Granny (Nanny's mother, my great-grandmother), who had a fabulous knack for that and a lot of things. I think she potty trained everyone from Nanny to me, and probably some neighborhood kids in there too! This difficulty is one of the things people don't always realize is on the ASD menu. Funny thing about that menu... great selection, but you don't make the choices. It's a ginormous grab-bag of traits, problems, difficulties and gifts. Not everyone even gets the same number of them.
One of our menu items is the potty mess. I must say that we don't have it NEARLY to the degree that a lot of people do. Ryan usually does very well in routine. We had been doing so very well for a long time, and just in the last few weeks we've seen a bit of regression. This is one of the things about autism that I have the hardest time dealing with. We think he stims on the feeling of it... I must emphasize "think". No idea if that's really what the deal is. He has a tendency to use this as something to exert control over when things are changing, it seems. And oh, are we ever tired of it! Did I mention that I have a nearly 3 year old and a 15 month old, too?! Maybe that's why I'm not scared of cloth diapers. I've cleaned so many diaper-used pairs of underoos and pants I'm nearing pro-level on getting smells out of stuff. Yeah, cloth diapers are totally not a problem... and they save us enough money to make sure Ryan gets to therapy and back, and we still get to eat.
With two in diapers and one prone to accidents at times, you'd think I'd be the first in line to start potty training Richie. In reality, the thought makes me tired. The cutesie training pants ads, the neat little videos and stuff... part of me wants to think it's cute and cool and try to get into it, and the other part of me wants to throw myself on the bed and cry. We have been working on this since right before we left Fairfield. That would be about three years. Three years of poopy pull-ups, underwear, pants, bribes, even pleading with Ryan to not poop on Elmo's face, conveniently located on the little booty of his underwear. Nothing doing. Oh yes, he was doing famously for as long as we stayed in routine for a long time, but I think... no, I know... Ryan knows there's something afoot. He can feel the changes if nothing else.
We really don't know why. We really don't know if it's something he chooses or if he just doesn't get it, or if there's something about it that he kinda stims on, in an odd way. It is, however, one of the biggest kicks in the gut of the whole autism thing. It's this kind of thing that makes us panic. In that one instant, that one flash of light, you see his whole life flash before you. It's in that instant that it's tempting to try to wrest control.
But the more I try to control, the more I get angry when I realize there's no hope of control. So I have to practice the heart-change of wanting to instead understand, meet Ryan where he is, and try to go from there. I have to be okay with the prospect of potty training being an ongoing thing for a long, long time.
I also have to be okay with... even find joy with... the fact that there are so many things that I have to face by myself. When I say "by myself" or "alone", I mean time with no other adults with skin on in the house. No one to say, "you go sit down, I'll take this one". No one to play with the littles... or at least keep them out of trouble... while I go through the whole "where do we put our poop, Ryan?" think for the bajillionth time. Yes, my Eric and I are here together, but there are times when he is not (although Jesus always is... and without that, oh my...).
Tonight I was listening to my husband read "Oh, The Places You'll Go" by Dr. Seuss to the boys before bed, and these words floated over the laptop screen and into my ears,
All Alone!
Whether you like it or not,
Alone will be something you'll be quite a lot.
And when you're there, there's a very good chance
you'll meet things that scare you right out of your pants.
There are some, down the road between hither and yon,
that scare you so much you won't want to go on.
Yep, there are days that I'm scared so much I'm not sure I can go on. That something has to give. Something simply must change or improve, even if that something is me. There are moments like this, for sure. And in these moments, these days of dread and not being sure what to do next, there is always something. Something like this poetic little book, a song, or a verse that helps me just go ahead and cry. Get it out there, admit that I'm not able, without His help, to keep pedaling. Sometimes it's something cool, like Ryan at bedtime last night, wriggling his arm out of the covers of the top bunk and pulling my arm over so that he could lay his head on it, then whispering in his sweet, robotic way, "I love you mommy." Or maybe it's Richie shoving one of his stuffed animals at me, insisting that I sleep with it tonight. Other times the something comes in the form of encouragement from someone, or from my bible study time. But it is always there, just when I need it.
This morning, my bible study happened to be in Joshua, right at the time when it's time for the now-nation of Israel to cross the Jordan river on their way to Jericho. God told Joshua to tell the priests who bore the ark of the covenant, "When you come to the brink of the waters of the Jordan, you shall stand still in the Jordan." I grew up in eastern Oklahoma, and one of my favorite memories of childhood is swimming and fishing in the rivers. I cannot imagine someone telling me to just climb in and stand still. It'll stand still with you, I promise. Oh, I can imagine them telling me that all right. I can also imagine laughing in their faces!
But they did, and God held the waters back for the whole nation of Israel to pass through.
Sometimes, being "strong and courageous" as Joshua was commanded so very many times has very little to do with action. Sometimes standing still and being obedient in being still is the best thing we can do. Clinging tight to what we know to be true, even when it may not look like even we thought it should look, and carrying on in His name and for His sake in the face of the unknown is the not so popular side of courage. Believing hard on the hope we profess in Christ is at its most powerful when the world knows they don't want to play the hand you've been dealt. When it's three o'clock in the morning and you've been up and down over and over with the sick one, or the one who can't sleep (never will I forget that many ASD kids can't... mine can and I am forever grateful), or you're heating up that same pizza, cleaning up that same mess, scrubbing out that same underwear, watching that same video, remember that although no one with skin on sees, they also cannot do what you do the way you do it. No one can. No one can be Mama but Mama.
Because on some level, they know. They know and their siblings know. They know you have seen them at their absolute worst, and they see the grace, mercy, and love, and the faithfullness that your actions show. And since they see these things, it makes it so much more powerful when they hear you whisper, every night, with a hug and a prayer...
God has big plans for you, baby. God's gonna use you, and I can't wait to watch.
Because He does, and He is. And I can't wait to watch. So I will try again tomorrow.
Tuesday, May 17, 2011
We have new peepers!
I am so stinkin' proud of my son... and I am so grateful to be a beneficiary of God's providence!
Yes, I know you knew that. But today, in a time when I've had to hang on so tight to the hope we profess just to keep a smile on my face, I have had a heaping pile of wonderful dropped from heaven.
Ryan had the best day at school... maybe the best day ever.
Okay, I have to back up a bit. If you don't know about our history with Ryan and pediatric glaucoma, you should go here and read Ryan's Story.
Well, didja?
Okay good. I knew you would! Y'all are so good to me.
So you can see that Ryan is not new to the world of vision trouble. When he was just 9 months old he had glasses for a while, but at some point after he was about 18 months old or so, he quit leaving them on. After that, they were never quite sure if he really needed them or not, and being the family living on *a* teacher's salary, we chose to wait. They had been doing exams under anesthesia, and after the last time about two years ago when he came out of anesthesia kicking and screaming, I got a little spooked. This was also the time we were beginning to talk about autism, and I just wasn't comfortable with Ryan going under general anesthesia to have his eyes checked. They always came back saying they were sure the glaucoma was well under control. So with the doctor's blessing, we waited a while.
Yesterday was Ryan's first appointment in 2 years. These appointments are not just going down the street to the doctor's office. These involve a trip to Dallas, sometimes in the middle of the week. We live about an hour and forty-five minutes from the big D, and if we can get an appointment on a Monday or Friday, we can stay in Richardson (ANY excuse to go see Grammy and Grampy). Otherwise it's to Children's in Dallas and back... with three kids.
Sounds tempting, no?
Now, if you don't know Ryan or you don't have an ASD child, you may be thinking "Trip to the opthalmologist? It's not like the dentist, for goodness sake! What's the big deal?" The big deal is that Ryan doesn't process verbal instruction just real well. Add to that a new environment, lack of communication skill other than screaming and kicking, and here we go! All you ASD parents know where I am with this. You might as well be pulling teeth without anesthesia. The assisting resident came in, a pretty twentysomething with brown hair and a precious smile. Ryan walked right up to her and pointed, saying "it's a woman!" Thankfully, she thought it was cute. After she thanked him for not thinking she was a man, we had to let the sweet resident shine a couple of lights at him... still not sure what she was doing, but Ryan wasn't impressed. Then came the fun part.
Ever had your pressures checked? Ever had your eyes dilated?
Yep, had to do both while the nurse and I held Ryan while she did both. I tried to tell Ryan that the doctor was going to give his eye a high five real quick, and he had to hold real still. This little exam is the difference between having to spend a day in day surgery and being able to have this be our only visit. And oh, did he scream and kick. She did manage to get the pressures, which she said were slightly elevated but probably just due to his screaming. I'm good with that. And I must say, this doctor was very pleasant.
Next we see the big doc, Dr. Weekley. This is the opthalmologist that made me want to go all redneck mama bear on him the first time we sat in the clinic at Children's on the emergency visit as scared, horse-in-a-fire first time parents who had just been sent on a flying trip to see what was up with our 3 month old baby. This dude blew in right out of surgery, I guess, in his scrubs, complete with hat, spouting "I want to see the baby with the cloudy eyes!" with an irreverence that, well, made me angry. But I digress...
Enter Dr. Weekley. Ryan walks up to him, points, and says "it's a woman!" again. I know! Should have known at that point we needed glasses. I held Ryan in my lap... and by "held" I mean "held down his arms and legs so he wouldn't kick the fire out of this dude"... while he refracted Ryan's dilated eyes. He gave us a script for glasses and sent us on our way, suggesting that we see Dr. Whitson (the surgeon who rebuilt Ryan's tearducts) to determine how he thinks the glaucoma thing is going.
Ok, now we're on our way to the closest Lens Crafters (they have one in Waco, and we wanted to get his glasses ASAP). After a call to Eric's Mom, we find that the nearest Lens Crafters is in Northpark Mall.
Goodie.
I used to like going places like that.... and if you don't know what I mean by that, here you go... the Lens Crafters is located in between Neiman Marcus and Barney's. Just across the way is the Gucci store. There is valet parking for these places! And while you shop, for a fee, they'll detail your car. I cannot imagine being able to just toss money around like that! So we felt a wee bit out of place, being the Target, Ross, and Marshall's-loving folk we are. By now Ryan is thouroughly disgusted with not being able to see. After a few times of persuading Ryan to take off his sunglasses and put on frames, most of which he promptly yanked off, we found them. I placed a pair of dark blue plastic frames on his face, he looked in the mirror, and exclaimed "yes!" Whew! Then was the whole measuring for the distance between his eyes thing... yeesh. Yes, everything is a challenge. Every. Little. Thing.
Fast forward to home a few hours later, and we make the rule that if he wants to play ipad, he must wear his glasses. So after saying "no glasses, no ipad" about fifty times, he got the idea. Then we noticed that he wasn't tilting his head to focus the right eye. His eyes are very opposite, one being farsighted and the other near. He still wasn't too thrilled with the idea of keeping them on, but as the evening wore on, we noticed Ryan pulling at them less and doing things on the ipad that, we assume, he hadn't been able to see to do before. After bedtime, we decided we'd wait and see in the morning how things went before we decided to send them to school.
Morning came, and at breakfast, Ryan fussed until he realized he didn't have his glasses. "Want your glasses?" he said, and we handed him his glasses. Well, guess we'll send them to school.
About 9:45, my phone rang and it was Ryan's teacher. UGH. Immediately, I thought it was going to be one of the standard three or four. Either he had messed his pants, was screaming and banging his head, or had a fever. Or worse, maybe his glasses were already broken or missing. GREAT.
"Just wanted to let you know, " she said, "that Ryan is having an awesome day. He hasn't taken off his glasses. He hasn't fussed at all."
I about fell over! I haven't been this thrilled with sudden progress since Ryan's first day of summer school in '08. He came home that day trying to communicate more than he ever had all of a sudden. Since he's been home today, he's not offered to take them off, either.
Back up now to that day I took Ryan in for that cold. If Dr. Orms hadn't caught the fact that the eye was a critical problem, Ryan would eventually have gone blind. Blind! Can you imagine everything we face on a daily basis PLUS blindness and horrible pain that comes with glaucoma?
Still thankful for that cold. Still thankful for that doctor in Fairfield who knew.
Whatever we're going through now, whatever trials we're facing, we have to remind ourselves that not only do we serve a God of 11:59 whose timing is perfect, but His plan is to prosper and not to harm us! (Jeremiah 29:11) We cannot always see how things are going to work, or why... and there are times we may never know the answer to "to what end".
But today, dear friends, I know. I know to what end, and therefore I will rejoice!!! I have been given one of the keys to unlocking my son's mind, and I am more than grateful! Believe, o weary one! Place your trust in Him, and have patience. Just as we're told in Hebrews 10:23, "Let us hold unswervingly to the hope we profess, for He who promised us is faithful!" I stand here today, promising with all confidence that God will not leave you hanging on for dear life without help! It may come in the form of a person, a word, a song, or His word, but hang in there... He will make a way!!! And when there's no way out, He will give you the encouragement you so desperately need to hang on.
How do I know?
MY SON CAN SEE!!!
Will you rejoice with me?
Come. People of the Risen King
Keith & Kristyn Getty & Stuart Townend
Come, people of the Risen King,
Who delight to bring Him praise;
Come all and tune your hearts to sing
To the Morning Star of grace.
From the shifting shadows of the earth
We will lift our eyes to Him,
Where steady arms of mercy reach
To gather children in.
REFRAIN
Rejoice, Rejoice! Let every tongue rejoice!
One heart, one voice; O Church of Christ, rejoice!
Come, those whose joy is morning sun,
And those weeping through the night;
Come, those who tell of battles won,
And those struggling in the fight.
For His perfect love will never change,
And His mercies never cease,
But follow us through all our days
With the certain hope of peace.
Come, young and old from every land -
Men and women of the faith;
Come, those with full or empty hands -
Find the riches of His grace.
Over all the world, His people sing -
Shore to shore we hear them call
The Truth that cries through every age:
“Our God is all in all”!
Yes, I know you knew that. But today, in a time when I've had to hang on so tight to the hope we profess just to keep a smile on my face, I have had a heaping pile of wonderful dropped from heaven.
Ryan had the best day at school... maybe the best day ever.
Okay, I have to back up a bit. If you don't know about our history with Ryan and pediatric glaucoma, you should go here and read Ryan's Story.
Well, didja?
Okay good. I knew you would! Y'all are so good to me.
So you can see that Ryan is not new to the world of vision trouble. When he was just 9 months old he had glasses for a while, but at some point after he was about 18 months old or so, he quit leaving them on. After that, they were never quite sure if he really needed them or not, and being the family living on *a* teacher's salary, we chose to wait. They had been doing exams under anesthesia, and after the last time about two years ago when he came out of anesthesia kicking and screaming, I got a little spooked. This was also the time we were beginning to talk about autism, and I just wasn't comfortable with Ryan going under general anesthesia to have his eyes checked. They always came back saying they were sure the glaucoma was well under control. So with the doctor's blessing, we waited a while.
Yesterday was Ryan's first appointment in 2 years. These appointments are not just going down the street to the doctor's office. These involve a trip to Dallas, sometimes in the middle of the week. We live about an hour and forty-five minutes from the big D, and if we can get an appointment on a Monday or Friday, we can stay in Richardson (ANY excuse to go see Grammy and Grampy). Otherwise it's to Children's in Dallas and back... with three kids.
Sounds tempting, no?
Now, if you don't know Ryan or you don't have an ASD child, you may be thinking "Trip to the opthalmologist? It's not like the dentist, for goodness sake! What's the big deal?" The big deal is that Ryan doesn't process verbal instruction just real well. Add to that a new environment, lack of communication skill other than screaming and kicking, and here we go! All you ASD parents know where I am with this. You might as well be pulling teeth without anesthesia. The assisting resident came in, a pretty twentysomething with brown hair and a precious smile. Ryan walked right up to her and pointed, saying "it's a woman!" Thankfully, she thought it was cute. After she thanked him for not thinking she was a man, we had to let the sweet resident shine a couple of lights at him... still not sure what she was doing, but Ryan wasn't impressed. Then came the fun part.
Ever had your pressures checked? Ever had your eyes dilated?
Yep, had to do both while the nurse and I held Ryan while she did both. I tried to tell Ryan that the doctor was going to give his eye a high five real quick, and he had to hold real still. This little exam is the difference between having to spend a day in day surgery and being able to have this be our only visit. And oh, did he scream and kick. She did manage to get the pressures, which she said were slightly elevated but probably just due to his screaming. I'm good with that. And I must say, this doctor was very pleasant.
Next we see the big doc, Dr. Weekley. This is the opthalmologist that made me want to go all redneck mama bear on him the first time we sat in the clinic at Children's on the emergency visit as scared, horse-in-a-fire first time parents who had just been sent on a flying trip to see what was up with our 3 month old baby. This dude blew in right out of surgery, I guess, in his scrubs, complete with hat, spouting "I want to see the baby with the cloudy eyes!" with an irreverence that, well, made me angry. But I digress...
Enter Dr. Weekley. Ryan walks up to him, points, and says "it's a woman!" again. I know! Should have known at that point we needed glasses. I held Ryan in my lap... and by "held" I mean "held down his arms and legs so he wouldn't kick the fire out of this dude"... while he refracted Ryan's dilated eyes. He gave us a script for glasses and sent us on our way, suggesting that we see Dr. Whitson (the surgeon who rebuilt Ryan's tearducts) to determine how he thinks the glaucoma thing is going.
Ok, now we're on our way to the closest Lens Crafters (they have one in Waco, and we wanted to get his glasses ASAP). After a call to Eric's Mom, we find that the nearest Lens Crafters is in Northpark Mall.
Goodie.
I used to like going places like that.... and if you don't know what I mean by that, here you go... the Lens Crafters is located in between Neiman Marcus and Barney's. Just across the way is the Gucci store. There is valet parking for these places! And while you shop, for a fee, they'll detail your car. I cannot imagine being able to just toss money around like that! So we felt a wee bit out of place, being the Target, Ross, and Marshall's-loving folk we are. By now Ryan is thouroughly disgusted with not being able to see. After a few times of persuading Ryan to take off his sunglasses and put on frames, most of which he promptly yanked off, we found them. I placed a pair of dark blue plastic frames on his face, he looked in the mirror, and exclaimed "yes!" Whew! Then was the whole measuring for the distance between his eyes thing... yeesh. Yes, everything is a challenge. Every. Little. Thing.
Fast forward to home a few hours later, and we make the rule that if he wants to play ipad, he must wear his glasses. So after saying "no glasses, no ipad" about fifty times, he got the idea. Then we noticed that he wasn't tilting his head to focus the right eye. His eyes are very opposite, one being farsighted and the other near. He still wasn't too thrilled with the idea of keeping them on, but as the evening wore on, we noticed Ryan pulling at them less and doing things on the ipad that, we assume, he hadn't been able to see to do before. After bedtime, we decided we'd wait and see in the morning how things went before we decided to send them to school.
Morning came, and at breakfast, Ryan fussed until he realized he didn't have his glasses. "Want your glasses?" he said, and we handed him his glasses. Well, guess we'll send them to school.
About 9:45, my phone rang and it was Ryan's teacher. UGH. Immediately, I thought it was going to be one of the standard three or four. Either he had messed his pants, was screaming and banging his head, or had a fever. Or worse, maybe his glasses were already broken or missing. GREAT.
"Just wanted to let you know, " she said, "that Ryan is having an awesome day. He hasn't taken off his glasses. He hasn't fussed at all."
I about fell over! I haven't been this thrilled with sudden progress since Ryan's first day of summer school in '08. He came home that day trying to communicate more than he ever had all of a sudden. Since he's been home today, he's not offered to take them off, either.
Back up now to that day I took Ryan in for that cold. If Dr. Orms hadn't caught the fact that the eye was a critical problem, Ryan would eventually have gone blind. Blind! Can you imagine everything we face on a daily basis PLUS blindness and horrible pain that comes with glaucoma?
Still thankful for that cold. Still thankful for that doctor in Fairfield who knew.
Whatever we're going through now, whatever trials we're facing, we have to remind ourselves that not only do we serve a God of 11:59 whose timing is perfect, but His plan is to prosper and not to harm us! (Jeremiah 29:11) We cannot always see how things are going to work, or why... and there are times we may never know the answer to "to what end".
But today, dear friends, I know. I know to what end, and therefore I will rejoice!!! I have been given one of the keys to unlocking my son's mind, and I am more than grateful! Believe, o weary one! Place your trust in Him, and have patience. Just as we're told in Hebrews 10:23, "Let us hold unswervingly to the hope we profess, for He who promised us is faithful!" I stand here today, promising with all confidence that God will not leave you hanging on for dear life without help! It may come in the form of a person, a word, a song, or His word, but hang in there... He will make a way!!! And when there's no way out, He will give you the encouragement you so desperately need to hang on.
How do I know?
MY SON CAN SEE!!!
Will you rejoice with me?
Come. People of the Risen King
Keith & Kristyn Getty & Stuart Townend
Come, people of the Risen King,
Who delight to bring Him praise;
Come all and tune your hearts to sing
To the Morning Star of grace.
From the shifting shadows of the earth
We will lift our eyes to Him,
Where steady arms of mercy reach
To gather children in.
REFRAIN
Rejoice, Rejoice! Let every tongue rejoice!
One heart, one voice; O Church of Christ, rejoice!
Come, those whose joy is morning sun,
And those weeping through the night;
Come, those who tell of battles won,
And those struggling in the fight.
For His perfect love will never change,
And His mercies never cease,
But follow us through all our days
With the certain hope of peace.
Come, young and old from every land -
Men and women of the faith;
Come, those with full or empty hands -
Find the riches of His grace.
Over all the world, His people sing -
Shore to shore we hear them call
The Truth that cries through every age:
“Our God is all in all”!
Friday, May 13, 2011
Severe.
It's quiet in my living room. I can hear Richie and Maelynn breathing in their sleep (yes, I let them sleep in the living room today). I can hear the rain and occasional thunder from the glorious storm outside. Oddly enough, it matches the storm on the inside.
Yesterday The Weather Channel kept texting me. "A Severe Thunderstorm Warning has been issued for Groesbeck, TX" it said, over and over. After watching the hopeful green and yellow on the weather map fade around Groesbeck all spring, I can't help but think, "Sure. I'll believe it when I see it." This time, it really rained! It stormed all night last night, and all day today, pretty much. I prayed hard yesterday for rain, but no tornadoes, please. We just went down that road, and I wasn't impressed. Rather I was impressed, but not in a positive way!
After picking up Ryan from school, we four made it back into the house to get ready for the evening. I attempted to be interested in things I needed to get done, but my attention completely lie in Ryan's Toy Story 3 backpack. Once I got everyone somewhat settled, this time on "Potty Elmo", still one of Ryan's faves, I sat down at the kitchen table with my coffee and got the plastic folder out of Ryan's backpack. Just as the diagnostician promised, there was a large manilla envelope inside. Fumbling with the metal brads, I reach the contents and begin to read. The report from the psychologist was very thorough, going back to Ryan's gestation, birth, and milestones. This was the culmination of the scads of paperwork involving hundreds of questions I answered with so many desperate words. Desperate to communicate that we LOVE Ryan. He is a great little guy! So loveable, so smart. We want what is best for him! We want God's best for him! We believe in what God made Ryan to be! Never had my no. 2 pencil flown with such urgency. Such desire to say the honest thing, no matter how embarrassing it is or how much it hurts. Every time I fill these things out, I get so worried that I'll answer wrongly, or accidentally be too harsh or easy on him. Imagine my surprise when I flip to the part that tells me that my answers were in a believeable pattern. Alrighty then! Looks like they had something in place all along to make sure the results were accurate. Silly girl; just answer the questions.
I read through all this mess, then got to the part where it says very plainly that the tests show that Ryan is severely autistic.
Severely autistic.
These words still hang in my mind the same way the word "autism" hung in the air when it was suggested by the first psychologist in 2008. But "severe"?
Yeah, 'fraid so.
I realize that this diagnosis does not change who Ryan is. Yes, I was honestly hoping for something a little lower on the ASD totem pole (though they're all challenging), and this was a bit of a blow. But that's all. Just a bit. I've already been living with this feeling of things changing... things getting more serious. I told Eric one day about a month ago, when we began realizing that our church involvement was about to diminish a bunch for at least a while, that I had a sinking feeling that we did not yet know the meaning of "sacrifice".
Hate it when I'm right.
As I read on in the 12-page report, I didn't cry. Didn't flinch. Didn't fall apart. I was able to read, comprehend, and remember that this is still Ryan. He may be a Mac in a PC world, but he's still Ryan. It was honestly a little freeing. Kind of justifying. Making that feeling that things are just different for our family real; giving me more concrete proof that yes, Ryan has to be cared for more and differently than typical children. That yes, my shaking my fist and crying out "But I wanted to be on the SUPPLY end of ministry... not the DEMAND end!" I wanted to be just like so many cool Christian families I watched as I grew up.
But God had other plans, and still does.
I started praying a long time ago that my will and His will would become the same thing, that I would have a heart like His... and although I know I will never be perfect, and His ways will always, no matter what be higher than mine, that does not excuse me from doing my best. Neither do the lives of people around me! Horizontal comparison of one's life and abilities can't lead to good things. There will always be someone better than you at what you do, and there will always be someone worse. Be it money, ability, posessions... whatever it is, "it" will never be enough. Not as long as I continue to compare to those around me. Material things aren't my temptation in this vein, and the same goes for money. The Lord provides and always has. But I just can't seem to shake the "what it looks like" feeling. What it looks like if we can't attend church get togethers, and some things that just don't work for us. What people are thinking when Ryan starts his screaming and slapping his head thing in the fat middle of a concert, church, or in a store.
What I'm learning right now is that I don't have to live by what others have thought, or what others are thinking or saying. While it is my responsibility to be respectful and kind, it is not my responsibility to make others think I'm doing all I can. Having been raised in a small community, I know how people talk. Believe me. I know the pain that causes. And here I am, living in fear of what might happen if I do what I feel is best for my family. HOW SILLY! I know better, and yet here I sit. Here I sit, afraid of making anyone angry or uncomfortable, no matter how uncomfortable I am or my family is.
And I'm done.
No, I'm not done with the church. Quite the opposite! I believe in the importance of the body of Christ in the life of each and every Christian. I am, however, done with attempting to fit the mold. Or even trying to figure out what the mold is, for cryin' out loud! Now that I'm the proud mother of three, one of whom is severely autistic, I can see why I didn't fit in in high school. I can see why my husband didn't, either. We know what it's like, and we were being prepared to be who God wanted us to be as parents and adults. I could go on and on whining about the pain of not being the same and how lonely and sad I was in high school, and a lot in college, too. But as a 32 year old mom who needs to understand that her boy is just different... not bad, but different... it is of the utmost importance that I recognize that as God's hand! NO I'm not condoning cliquish behavior, bullying, mean-girl brattiness or flat out discrimination. Those things are terrible and I'm against every one, and wish they would all just go away. But the truth is that we live in a fallen, sinful world and those things will not go away.
So what do we do? If I am confident that God has made me and my children with a plan and a purpose in mind, well, those things tend to sting less. If I live with my vision for my life being to fit in with everyone else, to always be smiled at, to always be the best, to always be the most loved, to never hurt anyone's feelings, to be a chameleon at all cost, I will surely live in misery. That is not at all who I am designed to be, and it is definitely not what Ryan will be. It is my hope and prayer that it isn't what my Richie and Maelynn will be, either. So I want God's best to be my vision. My vision for Ryan, Richie, and Maelynn; my vision for my marriage, my home, and my ministry (yes, we all have one... whether it's recognized or not) is to live as close to God's vision for me as I can possibly get.
So as I keep feeling my way through this autism thing, and as I figure out what role I can play in ministering to other parents and children in the ASD community and as I continute to minister to my family first and foremost, this is my prayer and I pray that it will be that of my children, also(so sorry I couldn't find a recording that wasn't obnoxious):
Be Thou my Vision, O Lord of my heart;
Naught be all else to me, save that Thou art.
Thou my best Thought, by day or by night,
Waking or sleeping, Thy presence my light.
Be Thou my Wisdom, and Thou my true Word;
Be ever with Thee and Thou with me, Lord;
Thou my great Father, I Thy true son;
Thou in me dwelling, and I with Thee one.
Be Thou my battle Shield, Sword for the fight;
Be Thou my Dignity, Thou my Delight;
Thou my soul’s Shelter, Thou my high Tower:
Raise Thou me heavenward, O Power of my power.
Riches I heed not, nor man’s empty praise,
Thou mine Inheritance, now and always:
Thou and Thou only, first in my heart,
High King of Heaven, my Treasure Thou art.
High King of Heaven, my victory won,
May I reach Heaven’s joys, O bright Heaven’s Sun!
Heart of my own heart, whatever befall,
Still be my Vision, O Ruler of all.
Words: Attributed to Dallan Forgaill, 8th Century (Rob tu mo bhoile, a Comdi cride); translated from ancient Irish to English by Mary E. Byrne, in “Eriú,” Journal of the School of Irish Learning, 1905, and versed by Eleanor H. Hull, 1912, alt.
Yesterday The Weather Channel kept texting me. "A Severe Thunderstorm Warning has been issued for Groesbeck, TX" it said, over and over. After watching the hopeful green and yellow on the weather map fade around Groesbeck all spring, I can't help but think, "Sure. I'll believe it when I see it." This time, it really rained! It stormed all night last night, and all day today, pretty much. I prayed hard yesterday for rain, but no tornadoes, please. We just went down that road, and I wasn't impressed. Rather I was impressed, but not in a positive way!
After picking up Ryan from school, we four made it back into the house to get ready for the evening. I attempted to be interested in things I needed to get done, but my attention completely lie in Ryan's Toy Story 3 backpack. Once I got everyone somewhat settled, this time on "Potty Elmo", still one of Ryan's faves, I sat down at the kitchen table with my coffee and got the plastic folder out of Ryan's backpack. Just as the diagnostician promised, there was a large manilla envelope inside. Fumbling with the metal brads, I reach the contents and begin to read. The report from the psychologist was very thorough, going back to Ryan's gestation, birth, and milestones. This was the culmination of the scads of paperwork involving hundreds of questions I answered with so many desperate words. Desperate to communicate that we LOVE Ryan. He is a great little guy! So loveable, so smart. We want what is best for him! We want God's best for him! We believe in what God made Ryan to be! Never had my no. 2 pencil flown with such urgency. Such desire to say the honest thing, no matter how embarrassing it is or how much it hurts. Every time I fill these things out, I get so worried that I'll answer wrongly, or accidentally be too harsh or easy on him. Imagine my surprise when I flip to the part that tells me that my answers were in a believeable pattern. Alrighty then! Looks like they had something in place all along to make sure the results were accurate. Silly girl; just answer the questions.
I read through all this mess, then got to the part where it says very plainly that the tests show that Ryan is severely autistic.
Severely autistic.
These words still hang in my mind the same way the word "autism" hung in the air when it was suggested by the first psychologist in 2008. But "severe"?
Yeah, 'fraid so.
I realize that this diagnosis does not change who Ryan is. Yes, I was honestly hoping for something a little lower on the ASD totem pole (though they're all challenging), and this was a bit of a blow. But that's all. Just a bit. I've already been living with this feeling of things changing... things getting more serious. I told Eric one day about a month ago, when we began realizing that our church involvement was about to diminish a bunch for at least a while, that I had a sinking feeling that we did not yet know the meaning of "sacrifice".
Hate it when I'm right.
As I read on in the 12-page report, I didn't cry. Didn't flinch. Didn't fall apart. I was able to read, comprehend, and remember that this is still Ryan. He may be a Mac in a PC world, but he's still Ryan. It was honestly a little freeing. Kind of justifying. Making that feeling that things are just different for our family real; giving me more concrete proof that yes, Ryan has to be cared for more and differently than typical children. That yes, my shaking my fist and crying out "But I wanted to be on the SUPPLY end of ministry... not the DEMAND end!" I wanted to be just like so many cool Christian families I watched as I grew up.
But God had other plans, and still does.
I started praying a long time ago that my will and His will would become the same thing, that I would have a heart like His... and although I know I will never be perfect, and His ways will always, no matter what be higher than mine, that does not excuse me from doing my best. Neither do the lives of people around me! Horizontal comparison of one's life and abilities can't lead to good things. There will always be someone better than you at what you do, and there will always be someone worse. Be it money, ability, posessions... whatever it is, "it" will never be enough. Not as long as I continue to compare to those around me. Material things aren't my temptation in this vein, and the same goes for money. The Lord provides and always has. But I just can't seem to shake the "what it looks like" feeling. What it looks like if we can't attend church get togethers, and some things that just don't work for us. What people are thinking when Ryan starts his screaming and slapping his head thing in the fat middle of a concert, church, or in a store.
What I'm learning right now is that I don't have to live by what others have thought, or what others are thinking or saying. While it is my responsibility to be respectful and kind, it is not my responsibility to make others think I'm doing all I can. Having been raised in a small community, I know how people talk. Believe me. I know the pain that causes. And here I am, living in fear of what might happen if I do what I feel is best for my family. HOW SILLY! I know better, and yet here I sit. Here I sit, afraid of making anyone angry or uncomfortable, no matter how uncomfortable I am or my family is.
And I'm done.
No, I'm not done with the church. Quite the opposite! I believe in the importance of the body of Christ in the life of each and every Christian. I am, however, done with attempting to fit the mold. Or even trying to figure out what the mold is, for cryin' out loud! Now that I'm the proud mother of three, one of whom is severely autistic, I can see why I didn't fit in in high school. I can see why my husband didn't, either. We know what it's like, and we were being prepared to be who God wanted us to be as parents and adults. I could go on and on whining about the pain of not being the same and how lonely and sad I was in high school, and a lot in college, too. But as a 32 year old mom who needs to understand that her boy is just different... not bad, but different... it is of the utmost importance that I recognize that as God's hand! NO I'm not condoning cliquish behavior, bullying, mean-girl brattiness or flat out discrimination. Those things are terrible and I'm against every one, and wish they would all just go away. But the truth is that we live in a fallen, sinful world and those things will not go away.
So what do we do? If I am confident that God has made me and my children with a plan and a purpose in mind, well, those things tend to sting less. If I live with my vision for my life being to fit in with everyone else, to always be smiled at, to always be the best, to always be the most loved, to never hurt anyone's feelings, to be a chameleon at all cost, I will surely live in misery. That is not at all who I am designed to be, and it is definitely not what Ryan will be. It is my hope and prayer that it isn't what my Richie and Maelynn will be, either. So I want God's best to be my vision. My vision for Ryan, Richie, and Maelynn; my vision for my marriage, my home, and my ministry (yes, we all have one... whether it's recognized or not) is to live as close to God's vision for me as I can possibly get.
So as I keep feeling my way through this autism thing, and as I figure out what role I can play in ministering to other parents and children in the ASD community and as I continute to minister to my family first and foremost, this is my prayer and I pray that it will be that of my children, also(so sorry I couldn't find a recording that wasn't obnoxious):
Be Thou my Vision, O Lord of my heart;
Naught be all else to me, save that Thou art.
Thou my best Thought, by day or by night,
Waking or sleeping, Thy presence my light.
Be Thou my Wisdom, and Thou my true Word;
Be ever with Thee and Thou with me, Lord;
Thou my great Father, I Thy true son;
Thou in me dwelling, and I with Thee one.
Be Thou my battle Shield, Sword for the fight;
Be Thou my Dignity, Thou my Delight;
Thou my soul’s Shelter, Thou my high Tower:
Raise Thou me heavenward, O Power of my power.
Riches I heed not, nor man’s empty praise,
Thou mine Inheritance, now and always:
Thou and Thou only, first in my heart,
High King of Heaven, my Treasure Thou art.
High King of Heaven, my victory won,
May I reach Heaven’s joys, O bright Heaven’s Sun!
Heart of my own heart, whatever befall,
Still be my Vision, O Ruler of all.
Words: Attributed to Dallan Forgaill, 8th Century (Rob tu mo bhoile, a Comdi cride); translated from ancient Irish to English by Mary E. Byrne, in “Eriú,” Journal of the School of Irish Learning, 1905, and versed by Eleanor H. Hull, 1912, alt.
Monday, May 9, 2011
Mother's Day Cards
Wow... what a fabulous Mother's Day weekend was had by all in this family! I feel completely spoiled rotten. To cap off a wonderful weekend, Eric and the other guy in our small group (it really is a "small" group... tee-hee) made dinner last night AND did all the dishes from the weekend. Yep, I dropped that ball bigtime this weekend... we had a great time running around and enjoying each other and I didn't log much time in front of the sink. Due to a generous gift from a fabulous couple, we took the kids to the Mayborn Museum in Waco and had a blast... there will be a post and pictures from that later.
But the best parts of my Mother's Day were the encouragement that overflowed from my dear family and friends. Especially from my dear Eric and my Mama. All of you who commented, hugged, or hit the "like" button, or shared the page so that the news that we're not alone might reach one more person, thank you from the depths of my soul.
Can't lie... Mother's Day is important to me, but the most important part is getting to be with my kids in church. Looking in the rearview mirror (the kid one... you know, the kind that hangs below the actual rearview mirror, revealing who's poking who in the backseat) as we crossed the railroad tracks during the three minute drive to church, my heart was struck with amazement at the kids. "Look at my babies!" I said to Eric. One of the few delicious moments of normalcy in our lives. All three kids, dressed for church. Ryan, with his striped blue dress shirt and khakis and huge blue eyes; Richie, in his plaid blue, green and white shirt and khakis with golden curls swept to the back of his head; Maelynn, in her brown and pink dress with little brown fountain pigtails spouting from her sweet head. Many times I'm shocked for a moment that I have it all... the house on the corner with a giant tree in the front yard, two boys and a girl, not to mention the best husband ever to stand at the altar. Yep, folks... even with the challenges, it's a fairy tale. After all, we all know that every fairy tale has a villain of a sort. There's a great challenge for some mama or daddy who can draw... a cartoon representation of the villain of autism. If only there were magic words. But I digress.
Once we were at church, we did the usual divide and conquer. Eric took Ryan to Sunday school through the south door so we could avoid walking by the nursery and room with a train table. Ryan knows he doesn't want to go to the nursery, and can at times decide to pitch a fit when we walk by and stop to take the littles. That or he'll run on by himself. Either way, not the best option. I take the littles to the door halway to the other end of the building. We always meet back at the van, where I get my precious coffee from the cupholder, and grab our bibles and my purse, then head to Sunday school for us. This is the one time during the week we can walk hand-in-hand, not concerned with playing "whack a mole" (my affectionate term for trying to herd the kids) and we love it.
A little over halfway through class, one of our teacher's/friend's kids came in, having been let out early himself. No biggie, he's a sweetie and just wanted to check in to go to the playground. Cool. Not five minutes later, here he comes, same little guy, this time with a message. "Mrs. Senzig, Ryan's stuck in a swing." He reported just as sweetly and calmly as one could... actually, the media could use some guys like him. So I hop up and go to the rescue.
Ryan has a thing about the baby swings. They're comfortable, and they're routine. One of those things, like Elmo and the Baby Einstein "Meet the Orchestra" video, we can't seem to outgrow. He'd managed to get into a swing, and from what I heard, didn't want to get out, not that I'm sure he could if he'd tried. So I lifted my nearly six-year-old boy, and his sweet teacher wrested his feet from the leg-holes. He was throwing a pretty good fit, too, so I just decided to take him with me. After a little yelling from his perch on my hip, Ryan chilled out as much as Ryan chills out, and we made our way to Mommy and Daddy's class. He sat on my lap and snuggled, and since there wasn't much to check out in the room, he was pretty calm. We finished our lesson and made it to church, talking outside the Sunday school room a lot less than usual to keep him moving and calm. Being a southern mama, I want my kids to be polite, thank you ma'am... so I encourage him to say "hi" to the people we meet and especially those who say hi to him.
Guess I asked him to say "hi" just once too much, because as we entered the sanctuary and I asked him to say "Hi" again, Ryan began to scream, "SAY HIIII!!!! SAY HIIII!!!" over and over. Really loud. Our poor interim pastor had to address the congregation a couple of times, I think... can't say for sure, because like I said, I had Mr. Don't-make-me-say-hi-one-more-time at the end of my arm. I ducked my head down, tried to smile at the people who made eye contact (whether or not they smiled back) and made my way to our seat. Once seated, the fit continued for a minute, but if I can stay calm there's a much better chance he'll regain his composure. This time it worked. I asked if he'd like to snuggle mommy, and he replied "snuggle mommy", so he laid his head on my lap. He was minimally noisy, and as long as I remained seated while everyone else stood for singing, etc., he was pretty great. I was able to worship, stroking his little buzz-cut head all the way through the song part of the service. I was internally doing cartwheels! Maybe the change in routine wouldn't hurt that much! Maybe the fits due to the change wouldn't tank us today! Take that, autism!
For the special music, a lady in the church sang a song I'd never heard, and it was obviously themed for Mother's Day. It was too perfect, and I had to google it so I could share it with you.
You Cannot Lose My Love
-Sara Groves
You will lose your baby teeth.
At times, you'll lose your faith in me.
You will lose a lot of things,
But you cannot lose my love.
You may lose your appetite,
Your guiding sense of wrong and right.
You may lose your will to fight,
But you cannot lose my love.
You will lose your confidence.
In times of trial, your common sense.
You may lose your innocence,
But you cannot lose my love.
Many things can be misplaced;
Your very memories be erased.
No matter what the time or space,
You cannot lose my love.
You cannot lose,
You cannot lose,
You cannot lose my love.
To Ryan, Richie, and Maelynn... I tell you now what I told your aunt Bree when she was little... you can't do anything that could make me stop loving you.
That's not an uncommon theme among mothers. I think all of us would agree with every word! But as I listened, with my special Ryan in my lap, the tears poured. Parents with special needs kids, I think we can all agree that...
They may not be potty trained,
Not much we say may be retained,
Though meltdowns our strength, they drain...
They'll never lose our love.
Though they may not fit the mold,
Others, our parenting, they'll question and scold,
Though they can't tell us if they're hungry, scared, or cold,
They'll never lose our love.
Though they may stim and hum,
They might scream till our ears are numb,
We may have to argue that they're not "dumb",
They'll never lose our love.
We may live in total lockdown,
Our stomachs may churn as we drive to town,
They might pound their heads on the ground,
But they'll never lose our love.
See, no matter where he fits or doesn't, no matter how many things I choose to stay home from to avoid trauma to all of us, no matter whether he makes it in Kindergarten next year, no matter where he's accepted or where he's not, he is accepted here. He is accepted in our home and our hearts. Just like I speak to all the kids every night, Jeremiah 29:11 tells us that God has a plan and purpose for our lives! Not "just typically-abled kids" or "kids who look like everyone else". Not just the people who strive to fit in and lose themselves in the pursuit of acceptance on this earth... EVERYONE.
Special needs parents... we don't always realize *ourselves* what we do. How different and hard it can be. I've fought against letting myself believe this, but I think it's because I was scared to think about it... as in, if I think about it, I'll start feeling sorry, then what's going to happen? So in the pursuit of not feeling sorry, I took it a step too far and began to run a wee bit too far in the other direction. I'm normal! See? I'm normal!
Psscht.
No, I'm not, and my life isn't, either. I have to realize that, and deal with it.
Deal with it?
Yep, play the cards. Not just hide them. From what I remember about playing "Pitch" with Nanny, Grandad, and Pop, Nanny's dad, it doesn't do you any good toward winning the game if you just keep everyone from seeing your cards. You have cards in your hand, and to have even a chance at winning, you have to PLAY THEM. Not just throw them on the table in a huff. Think through it, paying attention to what's played and what your partner has played. To use them to your advantage, you must take a good look at what you have and make a plan. And that plan only lasts as long as the hand lasts, then you get another one. You may have to change strategies, looking at the changes in what you're dealt with every hand. Which reminds me of Nanny and Grandad... when they got a hand they didn't like, they'd often say "Who dealt this mess?!" But often, the next hand would be perfect. But to get to the next hand, you have to play through the "mess".
And when you look at the "mess" versus the perfect hands... or even the ones that just work out... it's going to be better than alright. It's going to be God's best. As long as I look to him for the next step, the next card to play and how to play it, it's going to be God's best. Hang in there with me, y'all. We have to keep praying for each other and our kids, and waking up every day asking desperately for the wisdom, patience, and faith to live our lives today, not let them live us. There may be only one hand dealt in the day, but too often there are several.
That church service I was talking about? Yeah, Ryan got into the floor, then hit his head a couple of times, causing him to fuss... so we wound up walking out to the foyer to wait out the sermon. But after it was over, we had the rare treat of going to Mother's Day lunch with a couple of friends and their kids that we never get to see. And the rest of the day was just wonderful. If I'd tossed my cards on the table and told it all where to go when Ryan walked in screaming, I'd have missed that song. If I'd let embarrassment get the best of me and left in a huff when the fussing started, I'd have missed the two girls just a touch older than Ryan coming out of the balcony and doing their best to visit with him, begging me to let them entertain him till the end.
Yep, the great hands I'm dealt far outweigh the cruddy ones. But if I choose to forget that, I'll forfeit my turn, and lose.
And for my babies, that's simply not acceptable.
Keep playing.
But the best parts of my Mother's Day were the encouragement that overflowed from my dear family and friends. Especially from my dear Eric and my Mama. All of you who commented, hugged, or hit the "like" button, or shared the page so that the news that we're not alone might reach one more person, thank you from the depths of my soul.
Can't lie... Mother's Day is important to me, but the most important part is getting to be with my kids in church. Looking in the rearview mirror (the kid one... you know, the kind that hangs below the actual rearview mirror, revealing who's poking who in the backseat) as we crossed the railroad tracks during the three minute drive to church, my heart was struck with amazement at the kids. "Look at my babies!" I said to Eric. One of the few delicious moments of normalcy in our lives. All three kids, dressed for church. Ryan, with his striped blue dress shirt and khakis and huge blue eyes; Richie, in his plaid blue, green and white shirt and khakis with golden curls swept to the back of his head; Maelynn, in her brown and pink dress with little brown fountain pigtails spouting from her sweet head. Many times I'm shocked for a moment that I have it all... the house on the corner with a giant tree in the front yard, two boys and a girl, not to mention the best husband ever to stand at the altar. Yep, folks... even with the challenges, it's a fairy tale. After all, we all know that every fairy tale has a villain of a sort. There's a great challenge for some mama or daddy who can draw... a cartoon representation of the villain of autism. If only there were magic words. But I digress.
Once we were at church, we did the usual divide and conquer. Eric took Ryan to Sunday school through the south door so we could avoid walking by the nursery and room with a train table. Ryan knows he doesn't want to go to the nursery, and can at times decide to pitch a fit when we walk by and stop to take the littles. That or he'll run on by himself. Either way, not the best option. I take the littles to the door halway to the other end of the building. We always meet back at the van, where I get my precious coffee from the cupholder, and grab our bibles and my purse, then head to Sunday school for us. This is the one time during the week we can walk hand-in-hand, not concerned with playing "whack a mole" (my affectionate term for trying to herd the kids) and we love it.
A little over halfway through class, one of our teacher's/friend's kids came in, having been let out early himself. No biggie, he's a sweetie and just wanted to check in to go to the playground. Cool. Not five minutes later, here he comes, same little guy, this time with a message. "Mrs. Senzig, Ryan's stuck in a swing." He reported just as sweetly and calmly as one could... actually, the media could use some guys like him. So I hop up and go to the rescue.
Ryan has a thing about the baby swings. They're comfortable, and they're routine. One of those things, like Elmo and the Baby Einstein "Meet the Orchestra" video, we can't seem to outgrow. He'd managed to get into a swing, and from what I heard, didn't want to get out, not that I'm sure he could if he'd tried. So I lifted my nearly six-year-old boy, and his sweet teacher wrested his feet from the leg-holes. He was throwing a pretty good fit, too, so I just decided to take him with me. After a little yelling from his perch on my hip, Ryan chilled out as much as Ryan chills out, and we made our way to Mommy and Daddy's class. He sat on my lap and snuggled, and since there wasn't much to check out in the room, he was pretty calm. We finished our lesson and made it to church, talking outside the Sunday school room a lot less than usual to keep him moving and calm. Being a southern mama, I want my kids to be polite, thank you ma'am... so I encourage him to say "hi" to the people we meet and especially those who say hi to him.
Guess I asked him to say "hi" just once too much, because as we entered the sanctuary and I asked him to say "Hi" again, Ryan began to scream, "SAY HIIII!!!! SAY HIIII!!!" over and over. Really loud. Our poor interim pastor had to address the congregation a couple of times, I think... can't say for sure, because like I said, I had Mr. Don't-make-me-say-hi-one-more-time at the end of my arm. I ducked my head down, tried to smile at the people who made eye contact (whether or not they smiled back) and made my way to our seat. Once seated, the fit continued for a minute, but if I can stay calm there's a much better chance he'll regain his composure. This time it worked. I asked if he'd like to snuggle mommy, and he replied "snuggle mommy", so he laid his head on my lap. He was minimally noisy, and as long as I remained seated while everyone else stood for singing, etc., he was pretty great. I was able to worship, stroking his little buzz-cut head all the way through the song part of the service. I was internally doing cartwheels! Maybe the change in routine wouldn't hurt that much! Maybe the fits due to the change wouldn't tank us today! Take that, autism!
For the special music, a lady in the church sang a song I'd never heard, and it was obviously themed for Mother's Day. It was too perfect, and I had to google it so I could share it with you.
You Cannot Lose My Love
-Sara Groves
You will lose your baby teeth.
At times, you'll lose your faith in me.
You will lose a lot of things,
But you cannot lose my love.
You may lose your appetite,
Your guiding sense of wrong and right.
You may lose your will to fight,
But you cannot lose my love.
You will lose your confidence.
In times of trial, your common sense.
You may lose your innocence,
But you cannot lose my love.
Many things can be misplaced;
Your very memories be erased.
No matter what the time or space,
You cannot lose my love.
You cannot lose,
You cannot lose,
You cannot lose my love.
To Ryan, Richie, and Maelynn... I tell you now what I told your aunt Bree when she was little... you can't do anything that could make me stop loving you.
That's not an uncommon theme among mothers. I think all of us would agree with every word! But as I listened, with my special Ryan in my lap, the tears poured. Parents with special needs kids, I think we can all agree that...
They may not be potty trained,
Not much we say may be retained,
Though meltdowns our strength, they drain...
They'll never lose our love.
Though they may not fit the mold,
Others, our parenting, they'll question and scold,
Though they can't tell us if they're hungry, scared, or cold,
They'll never lose our love.
Though they may stim and hum,
They might scream till our ears are numb,
We may have to argue that they're not "dumb",
They'll never lose our love.
We may live in total lockdown,
Our stomachs may churn as we drive to town,
They might pound their heads on the ground,
But they'll never lose our love.
See, no matter where he fits or doesn't, no matter how many things I choose to stay home from to avoid trauma to all of us, no matter whether he makes it in Kindergarten next year, no matter where he's accepted or where he's not, he is accepted here. He is accepted in our home and our hearts. Just like I speak to all the kids every night, Jeremiah 29:11 tells us that God has a plan and purpose for our lives! Not "just typically-abled kids" or "kids who look like everyone else". Not just the people who strive to fit in and lose themselves in the pursuit of acceptance on this earth... EVERYONE.
Special needs parents... we don't always realize *ourselves* what we do. How different and hard it can be. I've fought against letting myself believe this, but I think it's because I was scared to think about it... as in, if I think about it, I'll start feeling sorry, then what's going to happen? So in the pursuit of not feeling sorry, I took it a step too far and began to run a wee bit too far in the other direction. I'm normal! See? I'm normal!
Psscht.
No, I'm not, and my life isn't, either. I have to realize that, and deal with it.
Deal with it?
Yep, play the cards. Not just hide them. From what I remember about playing "Pitch" with Nanny, Grandad, and Pop, Nanny's dad, it doesn't do you any good toward winning the game if you just keep everyone from seeing your cards. You have cards in your hand, and to have even a chance at winning, you have to PLAY THEM. Not just throw them on the table in a huff. Think through it, paying attention to what's played and what your partner has played. To use them to your advantage, you must take a good look at what you have and make a plan. And that plan only lasts as long as the hand lasts, then you get another one. You may have to change strategies, looking at the changes in what you're dealt with every hand. Which reminds me of Nanny and Grandad... when they got a hand they didn't like, they'd often say "Who dealt this mess?!" But often, the next hand would be perfect. But to get to the next hand, you have to play through the "mess".
And when you look at the "mess" versus the perfect hands... or even the ones that just work out... it's going to be better than alright. It's going to be God's best. As long as I look to him for the next step, the next card to play and how to play it, it's going to be God's best. Hang in there with me, y'all. We have to keep praying for each other and our kids, and waking up every day asking desperately for the wisdom, patience, and faith to live our lives today, not let them live us. There may be only one hand dealt in the day, but too often there are several.
That church service I was talking about? Yeah, Ryan got into the floor, then hit his head a couple of times, causing him to fuss... so we wound up walking out to the foyer to wait out the sermon. But after it was over, we had the rare treat of going to Mother's Day lunch with a couple of friends and their kids that we never get to see. And the rest of the day was just wonderful. If I'd tossed my cards on the table and told it all where to go when Ryan walked in screaming, I'd have missed that song. If I'd let embarrassment get the best of me and left in a huff when the fussing started, I'd have missed the two girls just a touch older than Ryan coming out of the balcony and doing their best to visit with him, begging me to let them entertain him till the end.
Yep, the great hands I'm dealt far outweigh the cruddy ones. But if I choose to forget that, I'll forfeit my turn, and lose.
And for my babies, that's simply not acceptable.
Keep playing.
Sunday, May 8, 2011
Happy Mother's Day!
Hi everyone - just so you know, this isn't Crystal blogging today, it's her husband Eric, guest blogging on this Mother's Day, 2011. Crystal has graciously allowed me to take the microphone for a day, so to speak, so that I can talk about ... her. :) Well, this is Mother's Day, after all, and I wanted those of you in reader-land to know what kind of person Crystal is and how dearly I love her.
If you had taken a snapshot of Crystal's life and another of mine before we met each other, you probably would never have thought we would wind up where we are today ... living in a small Texas town, parenting three wonderful kids, with Crystal giving up her career to be a stay at home mom. So many preconceived notions about the life we expected to have have been altered, or even turned upside down, but here we are, by the grace of God, and with His blessing, no less. Ryan's autism has been one of, if not THE biggest fruit basket turnover of our life together, but Crystal has met this challenge head-on with dogged determination to ensure that our son has everything we can possibly provide for him.
"She opens her mouth with wisdom, and the teaching of kindness is on her tongue." Proverbs 31:26
From the time that first knew Crystal - we met teaching band together in the same school district - it was clear that she had a gift for teaching and for connecting with her students. It was also clear that this came naturally to her and it did not come naturally to me. Over the course of time, Crystal was promoted over me, watched me be treated horribly in my next job, chose to sacrifice her career and dreams of being the best band director she could be so she could be the most devoted stay-at-home mom she could ... and after several years, she took the biggest leap of faith of our married life. Crystal had the love for me and faith in me to confront me with what I was doing wrong in the classroom, show me how I could be a better teacher, and encourage me to aspire to be the terrific teacher she knew I wanted to be and she knew I could be. It was not a quick process and it was definitely not all pleasant ... but my wife cared enough about me to do the hard things to help me be successful in my career.
She opens her hand to the poor and reaches out her hands to the needy. Proverbs 31:20
When Ryan was two going on three, and we were beginning to understand that something we couldn't put our finger on was wrong with him, we first heard this strange word, "autism". What was that about? Our son didn't have anything wrong with him, he was just slow building his vocabulary. Crystal's sister flapped her hands as a toddler when she got excited; it wasn't any big deal that Ryan did it constantly. Everyone told us encouragingly, and often sincerely, "Oh, he's just a late bloomer and he'll be caught up before you know it." Even when we first heard the diagnosis for Ryan was autism, many told us that "with intervention he'll be normal/cured/just fine by the time he's five". But as time went on ... especially as Ryan is now approaching the end of his three years in PPCD (preschool program for children with disabilities), and we are looking at turning his fragile world on its ear in this strange new world called "kindergarten" ... this autism thing has gripped us ever harder until we've had to stare it in the eye, and learn to stare it back down unflinchingly just to cope with it day by day. We've learned the hard way that having an autistic child can make you feel very lonely and detached from the rest of the world in some very painful ways. So what's one of the first things Crystal decides to do about it? Share her experiences through this blog, all of the best joys and rawest frustrations, everything. Not just to help her cope, but to help others cope, to give hope to those who desperately need it, to help people understand a little bit better what it's like to live the life of a parent with an autistic child. I deeply admire Crystal's heart for others, and especially for those in the same dark, lonely place that ours can often be, for the people who so badly need just the encouragement of knowing that there actually are other people out there who are as scared and discouraged as they are. Not to mention ... she's a darn good blogger too.
... A woman who fears the LORD is to be praised. Proverbs 31:30
Through all of our years together, Crystal has helped (and sometimes challenged) me to grow in my faith in Christ. Living a married life takes hard work! Realizing that hard, dedicated spiritual work produces the best possible married life - not the easiest or the most comfortable life, but the best one possible - is probably the lesson I'm most grateful for having Crystal show me. We wouldn't be where we are without it, and there's no way on earth (literally) that we would be able to cope with Ryan's autism and face our family's future together without knowing and living this. Our faith compels us to do the hard things that many couples neglect - communicate with each other, plan for our future, tackle the hardest problems that life throws at us, like Ryan's autism - and the fact that she is far more consistent at these things than I am only shows her devotion to me and to honoring her relationship with the Lord as well. Being at the crossroads that we're at with all of the aspects of parenting an autistic child about to enter kindergarten, we would completely flounder if we didn't believe and know, together, that Christ will hold us together in our worst moments, and pick us back up and put us together again when we fall apart during the even worse moments. It's not a way of life, it's a reality that we can't live without ... and I am so grateful that Crystal's devotion to the Lord reflects this truth.
An excellent wife who can find? She is far more precious than jewels.
The heart of her husband trusts in her. Proverbs 31: 10-11
Happy Mother's Day to the most wonderful woman in my life, whom I love with all of my heart. And now, dear readers, we return you to your regularly scheduled blogger. :)
If you had taken a snapshot of Crystal's life and another of mine before we met each other, you probably would never have thought we would wind up where we are today ... living in a small Texas town, parenting three wonderful kids, with Crystal giving up her career to be a stay at home mom. So many preconceived notions about the life we expected to have have been altered, or even turned upside down, but here we are, by the grace of God, and with His blessing, no less. Ryan's autism has been one of, if not THE biggest fruit basket turnover of our life together, but Crystal has met this challenge head-on with dogged determination to ensure that our son has everything we can possibly provide for him.
"She opens her mouth with wisdom, and the teaching of kindness is on her tongue." Proverbs 31:26
From the time that first knew Crystal - we met teaching band together in the same school district - it was clear that she had a gift for teaching and for connecting with her students. It was also clear that this came naturally to her and it did not come naturally to me. Over the course of time, Crystal was promoted over me, watched me be treated horribly in my next job, chose to sacrifice her career and dreams of being the best band director she could be so she could be the most devoted stay-at-home mom she could ... and after several years, she took the biggest leap of faith of our married life. Crystal had the love for me and faith in me to confront me with what I was doing wrong in the classroom, show me how I could be a better teacher, and encourage me to aspire to be the terrific teacher she knew I wanted to be and she knew I could be. It was not a quick process and it was definitely not all pleasant ... but my wife cared enough about me to do the hard things to help me be successful in my career.
She opens her hand to the poor and reaches out her hands to the needy. Proverbs 31:20
When Ryan was two going on three, and we were beginning to understand that something we couldn't put our finger on was wrong with him, we first heard this strange word, "autism". What was that about? Our son didn't have anything wrong with him, he was just slow building his vocabulary. Crystal's sister flapped her hands as a toddler when she got excited; it wasn't any big deal that Ryan did it constantly. Everyone told us encouragingly, and often sincerely, "Oh, he's just a late bloomer and he'll be caught up before you know it." Even when we first heard the diagnosis for Ryan was autism, many told us that "with intervention he'll be normal/cured/just fine by the time he's five". But as time went on ... especially as Ryan is now approaching the end of his three years in PPCD (preschool program for children with disabilities), and we are looking at turning his fragile world on its ear in this strange new world called "kindergarten" ... this autism thing has gripped us ever harder until we've had to stare it in the eye, and learn to stare it back down unflinchingly just to cope with it day by day. We've learned the hard way that having an autistic child can make you feel very lonely and detached from the rest of the world in some very painful ways. So what's one of the first things Crystal decides to do about it? Share her experiences through this blog, all of the best joys and rawest frustrations, everything. Not just to help her cope, but to help others cope, to give hope to those who desperately need it, to help people understand a little bit better what it's like to live the life of a parent with an autistic child. I deeply admire Crystal's heart for others, and especially for those in the same dark, lonely place that ours can often be, for the people who so badly need just the encouragement of knowing that there actually are other people out there who are as scared and discouraged as they are. Not to mention ... she's a darn good blogger too.
... A woman who fears the LORD is to be praised. Proverbs 31:30
Through all of our years together, Crystal has helped (and sometimes challenged) me to grow in my faith in Christ. Living a married life takes hard work! Realizing that hard, dedicated spiritual work produces the best possible married life - not the easiest or the most comfortable life, but the best one possible - is probably the lesson I'm most grateful for having Crystal show me. We wouldn't be where we are without it, and there's no way on earth (literally) that we would be able to cope with Ryan's autism and face our family's future together without knowing and living this. Our faith compels us to do the hard things that many couples neglect - communicate with each other, plan for our future, tackle the hardest problems that life throws at us, like Ryan's autism - and the fact that she is far more consistent at these things than I am only shows her devotion to me and to honoring her relationship with the Lord as well. Being at the crossroads that we're at with all of the aspects of parenting an autistic child about to enter kindergarten, we would completely flounder if we didn't believe and know, together, that Christ will hold us together in our worst moments, and pick us back up and put us together again when we fall apart during the even worse moments. It's not a way of life, it's a reality that we can't live without ... and I am so grateful that Crystal's devotion to the Lord reflects this truth.
An excellent wife who can find? She is far more precious than jewels.
The heart of her husband trusts in her. Proverbs 31: 10-11
Happy Mother's Day to the most wonderful woman in my life, whom I love with all of my heart. And now, dear readers, we return you to your regularly scheduled blogger. :)
Thursday, May 5, 2011
Just Like the Butter Queen
This evening, as I was making dinner, Ryan was playing the cake maker app on the ipad. I'm still in amazement that God gave us one of those amazing little inventions... thanks again for the raffle Chops Percussion! Once the tamale-like concoction I served tonight was in the oven, releasing me from the kitchen I went to check the ol' Facebook and email, and after playing with Richie and Maelynn and talking to Eric for a bit, I turned to Ryan, who was standing next to me. To my utter astonishment, Ryan had found the "add text" part of the app and was using it to TYPE WORDS! Not coying them, not misspelling... typing words from his own memory. Holy cow. So I sat there urging him to type more... anything more... and he came up with his first word again, which was "van". Then he typed "value" and "red". I about fell over. About the time he finished "red", the timer on the oven went off, but I vowed to return to our little session.
So I dropped a ball... again. Dinner for the rest of the family was ready, but Ryan's beloved pepperoni pizza was still frozen solid and the oven was at the wrong temperature. *sigh* Eric asks from under a pile of giggling children, "What's ETA on dinner?" "About fifteen, dear." Thankfully, Ryan's favorite pizza is only about a dollar apiece, and they cook in ten minutes. Which is good, because when I say "favorite" I mean the only thing he will consistently eat, and sometimes he won't touch that (hence my amazement the other day when he ate THREE PLATES of nachoey-stuff. I'm still reeling!). To the table, everyone... finally! Richie comes tearing in the kitchen bubbling over with "Oh boy, FOOD!" Everyone sits down, and Richie looks and sees that brother has pizza, and he has tamale whatever. I'll spare you the details, but let's just say some whining and attitude-adjusting later, Richie was eating, but after everyone had left the table. Usually he doesn't care a button for what Ryan has, but tonight it was all-out war. Things were rather circusey, but on a normal level of strange for us as I cleaned the kitchen, then went in the living room. No sooner had I logged on to- I thought- start this entry, when I realize how quiet it is. The quiet had been masked by my Eric playing the piano, but when I get up and turn around, I see the picture above. My little butter queen. I had a soft stick of butter out on the table where I thought she couldn't get it, but she proved me wrong! Butter all over the place. My table is rather old, and now, it's rather moisturized. So I laughed, grabbed the camera, snapped a few shots, and began to clean her up. Once she was clean and down, a few minutes later, she came running through the living room in her diaper with red on her back! Eric said, "what happened to you.... wait, that looks like pizza sauce!" Richie, who had been told that he could not have pizza because he threw such a fit over eating at least half his dinner before he could have what he wanted, had nabbed a piece of pizza while I was cleaning Mae and had been chasing his sister with it... and pushing her with it. WHEE!
Best part of all this? We laughed it all off! I know!!!
Sometimes, as we all know, you just have to grab the camera. The mess is made, the carpet is ruined, the paint is spilled, the kids are a mess... the deed is done. You've been given a moment. What's left is what you choose to do with it. Yes, the butter is wasted. Yes, there's more work to do. And control? What's control?
An illusion, that's what. You want control? Not me. I am the queen of forgetting, messing up, and generally making messes. It seems that in the past nine months or so if it wasn't life or death or at least at the very tippy-top of the priority list, I messed it up. Who wants someone with a batting average like that in control? Not me, for sure. I'm too weak and wretched to be in control. Yep. Wimpy. Tired. Exhaused. Confused. On the other end, too silly, selfish, and distractable as a human to be in control without messing up the whole enchilada. Therefore, I am one of those people who really, truly believes with all her heart that God is in ultimate control. There is one, and He's on His side, which happens to be our side. So you hear me talk constantly on and on about praying for this, that and the other. I pray for our kids, I pray for Eric. I pray for my friends, my church, and my family. I pray when I'm sad, scared, happy, nervous, and overjoyed. I pray for things to happen all the time, or to not happen... and ultimately for God's will... and for my will to become like His.
So everything happens just like I ask for it to happen, right?
Nope.
Why?
Because, as Isaiah 55:8-9 tells us, I don't get it. I can't see what's ahead. I can't see what God has in store. I look at Ryan's new-found typing ability and celebrate, desperate for anything that looks like it may be a key that unlocks something in his mind and heart. But I can't see ahead to know what, if anything, will come of it! I have prayed for Ryan so long and hard... and for us as we care for him, and for his teachers, and for everyone and everything I can think of that comes in contact with him or might. But I have to trust that God will orchestrate the steps and lead all of us in the right directions.
Now don't get the wrong idea. When I say "trust" I do not mean "sit on my rear and do nothing". I cannot just live the way I want, ignoring my responsibilities as a parent, wife, believer, and even my moral responsibilities as a human being and expect to have God's best fall at my feet. I cannot eat everything I want, sit around and do nothing, and pray that my jeans will continue to fit. Oh sure, I can do that... but I can promise you that my clothes will not continue to fit. Nor do I believe in a works-based, put some in and take some out type of faith. My God, my Father, is not a Santa Claus-type fairy who recieves our requests, processes, and delivers. But there's this pesky little bugger called "stewardship".
To me, and you can pick apart my theology if you like, this means that I have to try. God made us and He knows what our bodies, minds, and hearts can do better than we do. At this point, I'm doing my best to fully embrace the life I have. Not the life I dreamed of, or the things I thought I'd be, or even the things I worked to be... but the things I HAVE. And I have a LOT. Yes, things aren't just the easiest they could be right now. Three small kids, one with special needs, two in diapers, on a teacher's salary, a husband still recovering from back surgery who can't bend, lift, or twist (including kids)... the list goes on, as I'm sure yours does. Most of these I've embraced with no problem. Seriously. Back surgery? Psscht. Small kids? Cute as lil' bugs! Tight budget? Cloth diapers don't scare me. It's the Autism part that, up to this point, has paralyzed me. Scared to death to do the wrong thing, no idea what the right thing is, no idea even what questions to ask, tired of explaining and making excuses for the seemingly-odd decisions we make, and sick to my stomach at the thought that I'm not doing everything I should. Yep, that about covers it.
Step by step, doctor by doctor, specialist by specialist, therapist by therapist, website by website, blog by blog, book by book we wade into the spectrum. At the beginning it's so hard. It seems like every step you take into the waters of understanding and education burn with the sting of reality. But the more you work through that burn... the more you reach out and take the information offered, even if you don't use it or it isn't right for you, the more you allow yourself to log onto that blog and read the differing opinions... eventually it's comforting. As I pour over autism websites searching for something that will help us, as I pray and listen and read and talk to others, the biggest thing I'm learning right now is that "trying" to me may not look like "trying" to you. As many of you know, we're working hard right now to strip down and redo ourselves in many ways, only adding back the things that make us who God wants us to be for the best of our family, which is to say, for His glory. Not all of it makes sense, not all of it is cutting-edge, and I bet very little of it will look like anyone else's sense of "best" or "normal". But it's my best, and who said I wanted to be normal? Certainly not me. I'm the crazy mama who ran to take a picture of the butter queen.
So do your thing. Do your best. Smile. Laugh. And above all, know that God is looking down at you doing your best, smiling and grabbing His camera... because you're doing your best and he's proud of you. Not because you're doing it all just right, but because you're His. And just as I cleaned up Maelynn's mess, forgave Richie the pizza, and celebrated with Ryan, He will meet you where you are... you just have to sincerely TRY.
So I dropped a ball... again. Dinner for the rest of the family was ready, but Ryan's beloved pepperoni pizza was still frozen solid and the oven was at the wrong temperature. *sigh* Eric asks from under a pile of giggling children, "What's ETA on dinner?" "About fifteen, dear." Thankfully, Ryan's favorite pizza is only about a dollar apiece, and they cook in ten minutes. Which is good, because when I say "favorite" I mean the only thing he will consistently eat, and sometimes he won't touch that (hence my amazement the other day when he ate THREE PLATES of nachoey-stuff. I'm still reeling!). To the table, everyone... finally! Richie comes tearing in the kitchen bubbling over with "Oh boy, FOOD!" Everyone sits down, and Richie looks and sees that brother has pizza, and he has tamale whatever. I'll spare you the details, but let's just say some whining and attitude-adjusting later, Richie was eating, but after everyone had left the table. Usually he doesn't care a button for what Ryan has, but tonight it was all-out war. Things were rather circusey, but on a normal level of strange for us as I cleaned the kitchen, then went in the living room. No sooner had I logged on to- I thought- start this entry, when I realize how quiet it is. The quiet had been masked by my Eric playing the piano, but when I get up and turn around, I see the picture above. My little butter queen. I had a soft stick of butter out on the table where I thought she couldn't get it, but she proved me wrong! Butter all over the place. My table is rather old, and now, it's rather moisturized. So I laughed, grabbed the camera, snapped a few shots, and began to clean her up. Once she was clean and down, a few minutes later, she came running through the living room in her diaper with red on her back! Eric said, "what happened to you.... wait, that looks like pizza sauce!" Richie, who had been told that he could not have pizza because he threw such a fit over eating at least half his dinner before he could have what he wanted, had nabbed a piece of pizza while I was cleaning Mae and had been chasing his sister with it... and pushing her with it. WHEE!
Best part of all this? We laughed it all off! I know!!!
Sometimes, as we all know, you just have to grab the camera. The mess is made, the carpet is ruined, the paint is spilled, the kids are a mess... the deed is done. You've been given a moment. What's left is what you choose to do with it. Yes, the butter is wasted. Yes, there's more work to do. And control? What's control?
An illusion, that's what. You want control? Not me. I am the queen of forgetting, messing up, and generally making messes. It seems that in the past nine months or so if it wasn't life or death or at least at the very tippy-top of the priority list, I messed it up. Who wants someone with a batting average like that in control? Not me, for sure. I'm too weak and wretched to be in control. Yep. Wimpy. Tired. Exhaused. Confused. On the other end, too silly, selfish, and distractable as a human to be in control without messing up the whole enchilada. Therefore, I am one of those people who really, truly believes with all her heart that God is in ultimate control. There is one, and He's on His side, which happens to be our side. So you hear me talk constantly on and on about praying for this, that and the other. I pray for our kids, I pray for Eric. I pray for my friends, my church, and my family. I pray when I'm sad, scared, happy, nervous, and overjoyed. I pray for things to happen all the time, or to not happen... and ultimately for God's will... and for my will to become like His.
So everything happens just like I ask for it to happen, right?
Nope.
Why?
Because, as Isaiah 55:8-9 tells us, I don't get it. I can't see what's ahead. I can't see what God has in store. I look at Ryan's new-found typing ability and celebrate, desperate for anything that looks like it may be a key that unlocks something in his mind and heart. But I can't see ahead to know what, if anything, will come of it! I have prayed for Ryan so long and hard... and for us as we care for him, and for his teachers, and for everyone and everything I can think of that comes in contact with him or might. But I have to trust that God will orchestrate the steps and lead all of us in the right directions.
Now don't get the wrong idea. When I say "trust" I do not mean "sit on my rear and do nothing". I cannot just live the way I want, ignoring my responsibilities as a parent, wife, believer, and even my moral responsibilities as a human being and expect to have God's best fall at my feet. I cannot eat everything I want, sit around and do nothing, and pray that my jeans will continue to fit. Oh sure, I can do that... but I can promise you that my clothes will not continue to fit. Nor do I believe in a works-based, put some in and take some out type of faith. My God, my Father, is not a Santa Claus-type fairy who recieves our requests, processes, and delivers. But there's this pesky little bugger called "stewardship".
To me, and you can pick apart my theology if you like, this means that I have to try. God made us and He knows what our bodies, minds, and hearts can do better than we do. At this point, I'm doing my best to fully embrace the life I have. Not the life I dreamed of, or the things I thought I'd be, or even the things I worked to be... but the things I HAVE. And I have a LOT. Yes, things aren't just the easiest they could be right now. Three small kids, one with special needs, two in diapers, on a teacher's salary, a husband still recovering from back surgery who can't bend, lift, or twist (including kids)... the list goes on, as I'm sure yours does. Most of these I've embraced with no problem. Seriously. Back surgery? Psscht. Small kids? Cute as lil' bugs! Tight budget? Cloth diapers don't scare me. It's the Autism part that, up to this point, has paralyzed me. Scared to death to do the wrong thing, no idea what the right thing is, no idea even what questions to ask, tired of explaining and making excuses for the seemingly-odd decisions we make, and sick to my stomach at the thought that I'm not doing everything I should. Yep, that about covers it.
Step by step, doctor by doctor, specialist by specialist, therapist by therapist, website by website, blog by blog, book by book we wade into the spectrum. At the beginning it's so hard. It seems like every step you take into the waters of understanding and education burn with the sting of reality. But the more you work through that burn... the more you reach out and take the information offered, even if you don't use it or it isn't right for you, the more you allow yourself to log onto that blog and read the differing opinions... eventually it's comforting. As I pour over autism websites searching for something that will help us, as I pray and listen and read and talk to others, the biggest thing I'm learning right now is that "trying" to me may not look like "trying" to you. As many of you know, we're working hard right now to strip down and redo ourselves in many ways, only adding back the things that make us who God wants us to be for the best of our family, which is to say, for His glory. Not all of it makes sense, not all of it is cutting-edge, and I bet very little of it will look like anyone else's sense of "best" or "normal". But it's my best, and who said I wanted to be normal? Certainly not me. I'm the crazy mama who ran to take a picture of the butter queen.
So do your thing. Do your best. Smile. Laugh. And above all, know that God is looking down at you doing your best, smiling and grabbing His camera... because you're doing your best and he's proud of you. Not because you're doing it all just right, but because you're His. And just as I cleaned up Maelynn's mess, forgave Richie the pizza, and celebrated with Ryan, He will meet you where you are... you just have to sincerely TRY.
Tuesday, May 3, 2011
It's Going to Be Alright
Today Richie, Maelynn and I had a pretty regular day. We had our breakfast, then the kids played while I got my shopping list together. Eventually I was ready enough to walk through our local grocery store without making anyone too frightened or winding up on one of those joke websites of people with the newer age equivalent of toilet paper on their shoes. Diapers washed, kids in clean clothes and with clean faces, and I even had a clean travel coffee mug in the cabinet which was quickly filled with that wonderful stuff that I drink for the protection of those around me. The store had everything I needed, and even some on sale. Mae didn't lose her binky. The kids were sibling-fussy but overall not bad. Gas was less than it is in town, and after (what should have been as much as it cost) a fill up, I was on my way back to Groesbeck. Back in town before naptime, kids took their naps and I started laundry, dishes, and wading through the grocery put-away process. Stuck the kids in the van when 2:40 came and picked up Ryan, who fussed his usual fuss when we didn't turn to go to Waco to see Miss Staci, but nothing major.
The rest of the evening went much as this... and it was fabulous. It was like a day off. Ryan was so great, and only minimal fussing but no meltdowns! He had a better day at school too. Richie is talking more and more and is taking more care of his big brother, which is so sweet. When Ryan fusses in the van, Richie says "Shh, Wyan... it's okay." When he won't eat, Richie says, "eatcha food, Wyan" in the most gentle yet concerned way an almost three year-old could. But the latter wasn't needed... Ryan ate THREE PLATES of taco salad! Okay, it's meat, beans, chips and cheese but he ATE and it wasn't pizza. Much celebration ensued! Ryan was allowed a brownie and received much fanfare for his performance at the dinner table! Richie wasn't left out... he had two plates and got to have some sliced "pomato" for dinner. I know, right? One who won't eat anything and one who just wants tomatoes for dessert. God knew I needed a break in that area! After dinner, we went outside and played until it got too close to bedtime. Mae had a blast playing in poor Jedi's water (yes, I got him more) and Richie ran around the yard and slid down the slide. The next part was too cool.
Eric and I sat on the porch swing on the patio that overlooks the yard, and Ryan climbed up and laid across our laps. He was content to be there with us... no fussing, no beating his ears, no banging his head, no asking for Miss Staci.
He felt like my precious baby boy again.
He snuggled in our laps in a way that reminded me somehow of the night of the day he was born. I remember less of that day than I wish I did (thanks, demerol). But I do remember sitting up at about three in the morning in the hospital bed, holding this perfect little person. I remember the amazement that I was finally a mother. I was the mommy. It was surreal that this tiny little guy was now my responsibility. It was raining that night in Denton, and I remember looking out the window, watching it rain, praying for Ryan. Praying for us. As the rain slapped the window, by the light of the cracked bathroom door and the sound of my husband sleeping on a cot at the foot of the bed, I sat praying for Eric Ryan Senzig's whole life... his relationship with Christ, his future wife, even. That moment was unforgettable. The peace was amazing. We were a family! I'd wanted to be wife and mommy my whole life, and there you go. We went in that morning to have him turned (he was breech), and we decided to go ahead and have him that day. So it was go in surgery, come out with a baby. Yes, the nine months before I knew it was coming, but you can never know what it's really like until you're living it.
In the same way, I can't know what you're going through. You can tell me, and I will listen. I will do my best to encourage you, and try to empathize as best I can. Even if I walked your days right by your side, I can still never know exactly how you feel. Those of you who have an ASD child come closest, and that understanding is such a relief. Those of you who have worked with autistic kids have a good idea, too. But the best? The best thing ever is when people simply listen, admit they can't understand, maybe even ask a few questions... but admit they can't understand. Not necessarily feel sorry for us... Ryan is an amazing child! He is smarter than I am. I'm sure of that. And what an incredible gift to be the mother of three children! I am blessed beyond measure every day of my life whether I feel like it or not. But showing that you believe Eric and I are doing the best we can... trusting that we are doing the best we can... is the best way to offer human comfort.
It's just that some days, the differences seem to jump out and taunt you. Like I said before, I understand that getting my feelings hurt is going to be part of the growing pains of life for us, and I'm all for dealing with that and accepting it. But when those things jump out and smack me, my first instinct is to want to protect. Right now the act of leaving the house with all three kids ensures me an interesting time. One 15 month old, one 2 3/4 year old, and one nearly six year old who is on a 2 year old emotional and social level, plus one mother... versus the grocery store. Versus anywhere. I look at these things and pray with all my heart to "just please God let me be able to stay calm!" "Please God let me be able to keep them safe!" "Please God help me learn to handle this! Give me the strength, peace and energy! I SO can't do this without You, Lord!" That's what most of my prayers for the day look like. Until yesterday.
Yesterday, I ran across Psalm 139 and realized how, although I pray every day for my kids, I believe in my kids, I still looked at autism as something inflicted upon Ryan... as something that, I don't know, maybe some outside source caused. Not a believer in the conspiracy theories of what causes autism, one would wonder why this never occurred to me before. Psalm 139 applies to Ryan. I know, I know... we knew that. I tell my kids all the time that they are "fearfully and wonderfully made" and that God made them special and loves them very much (thank you, Bob and Larry).
So now, instead of praying that I can simply handle the fits, the meltdowns (and there is a difference), the fears, the impulses, the triggers... I promise you that I am praying that God will help me get to know Ryan... to ENJOY him, not survive him. Help me go back to that precious, peaceful first night of his life outside his mommy. God knows Ryan. He knows when Ryan "sits down and rises up," and He "discerns his thoughts from afar". He knows what Ryan is thinking! All this time I've been whining and crying and broken hearted over no one knowing what he's thinking... but God does! God does, and I want to. Hmm. What to do?
ASK, for cryin' in a bucket! ASK! I've said before in other times that one of the biggest lessons I've learned from my son about God is that He, as our Father, just wants to visit with us. To know what we think, feel, and desire... to hear it from US. To hear our voices cry out to Him in excitement and in fear, in joy and in hopelessness, in desperation and in times of plenty. Instead of praying to survive, I'm going to start praying for God to help me know and enjoy my children... especially the one who doesn't communicate so much. So if you'll allow me a little poetic liscence...
Psalm 139:1-10 (ESV... with Mama paraphrasing)
1O LORD, you have searched Ryan and know him!
2You know when he sits down and when he rises up;
you discern his thoughts from afar.
3You search out Ryan's path and his lying down
and are acquainted with all his ways.
4Even before a word is on Ryan's tongue,
behold, O LORD, you know it altogether.
5You hem Ryan in, behind and before,
and lay your hand upon him.
6Such knowledge is too wonderful for me;
it is high; I cannot attain it.
7Where shall Ryan go from your Spirit?
Or where shall he flee from your presence?
8 If Ryan ascends to heaven, you are there!
If he makes his bed in Sheol, you are there!
9If Ryan takes the wings of the morning
and dwells in the uttermost parts of the sea,
10even there your hand shall lead him,
and your right hand shall hold him.
God made Ryan and knows him far better than I do. He was there that rainy night in Denton, and he's here with us every day. He's with Ryan at school, on the playground, and in Sunday school. In ways I cannot, He can comfort Ryan, Richie, Maelynn... and me. Last night as I was surfing around on the various sites I visit, I found a link to this song. It's by Sara Groves, and I looked it up on Grooveshark (click and you can listen free) and sat and listened over and over as the tears fell because it hits home so accurately. It's Going to Be Alright... and it really is. Maybe it won't always feel that way. I can assure you it won't feel that way. There will be rough times, but I'll keep doing my best, seeking the Lord's help, and it's going to be alright. Not just for me... but for you, too, in whatever it is that I can't understand.
"It's Going to Be Alright"
By Sara Groves and Gordon Kennedy
It's going to be alright
It's going to be alright
I can tell by your eyes that you're not getting any sleep
And you try to rise above it, but feel you're sinking in too deep
Oh, oh I believe, I believe that
It's going to be alright
It's going to be alright
I believe you'll outlive this pain in you heart
And you'll gain such a strength from what is tearing you apart
Oh, oh I believe I believe that
It's going to be alright
It's going to be alright
When some time has past us, and the story if retold
It will mirror the strength and the courage in your soul
Oh, oh, I believe I believe,
I believe
I believe
I did not come here to offer you cliché's
I will not pretend to know of all your pain
Just when you cannot, then I will hold out faith, for you
It's going to be alright
It's going to be alright
The rest of the evening went much as this... and it was fabulous. It was like a day off. Ryan was so great, and only minimal fussing but no meltdowns! He had a better day at school too. Richie is talking more and more and is taking more care of his big brother, which is so sweet. When Ryan fusses in the van, Richie says "Shh, Wyan... it's okay." When he won't eat, Richie says, "eatcha food, Wyan" in the most gentle yet concerned way an almost three year-old could. But the latter wasn't needed... Ryan ate THREE PLATES of taco salad! Okay, it's meat, beans, chips and cheese but he ATE and it wasn't pizza. Much celebration ensued! Ryan was allowed a brownie and received much fanfare for his performance at the dinner table! Richie wasn't left out... he had two plates and got to have some sliced "pomato" for dinner. I know, right? One who won't eat anything and one who just wants tomatoes for dessert. God knew I needed a break in that area! After dinner, we went outside and played until it got too close to bedtime. Mae had a blast playing in poor Jedi's water (yes, I got him more) and Richie ran around the yard and slid down the slide. The next part was too cool.
Eric and I sat on the porch swing on the patio that overlooks the yard, and Ryan climbed up and laid across our laps. He was content to be there with us... no fussing, no beating his ears, no banging his head, no asking for Miss Staci.
He felt like my precious baby boy again.
He snuggled in our laps in a way that reminded me somehow of the night of the day he was born. I remember less of that day than I wish I did (thanks, demerol). But I do remember sitting up at about three in the morning in the hospital bed, holding this perfect little person. I remember the amazement that I was finally a mother. I was the mommy. It was surreal that this tiny little guy was now my responsibility. It was raining that night in Denton, and I remember looking out the window, watching it rain, praying for Ryan. Praying for us. As the rain slapped the window, by the light of the cracked bathroom door and the sound of my husband sleeping on a cot at the foot of the bed, I sat praying for Eric Ryan Senzig's whole life... his relationship with Christ, his future wife, even. That moment was unforgettable. The peace was amazing. We were a family! I'd wanted to be wife and mommy my whole life, and there you go. We went in that morning to have him turned (he was breech), and we decided to go ahead and have him that day. So it was go in surgery, come out with a baby. Yes, the nine months before I knew it was coming, but you can never know what it's really like until you're living it.
In the same way, I can't know what you're going through. You can tell me, and I will listen. I will do my best to encourage you, and try to empathize as best I can. Even if I walked your days right by your side, I can still never know exactly how you feel. Those of you who have an ASD child come closest, and that understanding is such a relief. Those of you who have worked with autistic kids have a good idea, too. But the best? The best thing ever is when people simply listen, admit they can't understand, maybe even ask a few questions... but admit they can't understand. Not necessarily feel sorry for us... Ryan is an amazing child! He is smarter than I am. I'm sure of that. And what an incredible gift to be the mother of three children! I am blessed beyond measure every day of my life whether I feel like it or not. But showing that you believe Eric and I are doing the best we can... trusting that we are doing the best we can... is the best way to offer human comfort.
It's just that some days, the differences seem to jump out and taunt you. Like I said before, I understand that getting my feelings hurt is going to be part of the growing pains of life for us, and I'm all for dealing with that and accepting it. But when those things jump out and smack me, my first instinct is to want to protect. Right now the act of leaving the house with all three kids ensures me an interesting time. One 15 month old, one 2 3/4 year old, and one nearly six year old who is on a 2 year old emotional and social level, plus one mother... versus the grocery store. Versus anywhere. I look at these things and pray with all my heart to "just please God let me be able to stay calm!" "Please God let me be able to keep them safe!" "Please God help me learn to handle this! Give me the strength, peace and energy! I SO can't do this without You, Lord!" That's what most of my prayers for the day look like. Until yesterday.
Yesterday, I ran across Psalm 139 and realized how, although I pray every day for my kids, I believe in my kids, I still looked at autism as something inflicted upon Ryan... as something that, I don't know, maybe some outside source caused. Not a believer in the conspiracy theories of what causes autism, one would wonder why this never occurred to me before. Psalm 139 applies to Ryan. I know, I know... we knew that. I tell my kids all the time that they are "fearfully and wonderfully made" and that God made them special and loves them very much (thank you, Bob and Larry).
So now, instead of praying that I can simply handle the fits, the meltdowns (and there is a difference), the fears, the impulses, the triggers... I promise you that I am praying that God will help me get to know Ryan... to ENJOY him, not survive him. Help me go back to that precious, peaceful first night of his life outside his mommy. God knows Ryan. He knows when Ryan "sits down and rises up," and He "discerns his thoughts from afar". He knows what Ryan is thinking! All this time I've been whining and crying and broken hearted over no one knowing what he's thinking... but God does! God does, and I want to. Hmm. What to do?
ASK, for cryin' in a bucket! ASK! I've said before in other times that one of the biggest lessons I've learned from my son about God is that He, as our Father, just wants to visit with us. To know what we think, feel, and desire... to hear it from US. To hear our voices cry out to Him in excitement and in fear, in joy and in hopelessness, in desperation and in times of plenty. Instead of praying to survive, I'm going to start praying for God to help me know and enjoy my children... especially the one who doesn't communicate so much. So if you'll allow me a little poetic liscence...
Psalm 139:1-10 (ESV... with Mama paraphrasing)
1O LORD, you have searched Ryan and know him!
2You know when he sits down and when he rises up;
you discern his thoughts from afar.
3You search out Ryan's path and his lying down
and are acquainted with all his ways.
4Even before a word is on Ryan's tongue,
behold, O LORD, you know it altogether.
5You hem Ryan in, behind and before,
and lay your hand upon him.
6Such knowledge is too wonderful for me;
it is high; I cannot attain it.
7Where shall Ryan go from your Spirit?
Or where shall he flee from your presence?
8 If Ryan ascends to heaven, you are there!
If he makes his bed in Sheol, you are there!
9If Ryan takes the wings of the morning
and dwells in the uttermost parts of the sea,
10even there your hand shall lead him,
and your right hand shall hold him.
God made Ryan and knows him far better than I do. He was there that rainy night in Denton, and he's here with us every day. He's with Ryan at school, on the playground, and in Sunday school. In ways I cannot, He can comfort Ryan, Richie, Maelynn... and me. Last night as I was surfing around on the various sites I visit, I found a link to this song. It's by Sara Groves, and I looked it up on Grooveshark (click and you can listen free) and sat and listened over and over as the tears fell because it hits home so accurately. It's Going to Be Alright... and it really is. Maybe it won't always feel that way. I can assure you it won't feel that way. There will be rough times, but I'll keep doing my best, seeking the Lord's help, and it's going to be alright. Not just for me... but for you, too, in whatever it is that I can't understand.
"It's Going to Be Alright"
By Sara Groves and Gordon Kennedy
It's going to be alright
It's going to be alright
I can tell by your eyes that you're not getting any sleep
And you try to rise above it, but feel you're sinking in too deep
Oh, oh I believe, I believe that
It's going to be alright
It's going to be alright
I believe you'll outlive this pain in you heart
And you'll gain such a strength from what is tearing you apart
Oh, oh I believe I believe that
It's going to be alright
It's going to be alright
When some time has past us, and the story if retold
It will mirror the strength and the courage in your soul
Oh, oh, I believe I believe,
I believe
I believe
I did not come here to offer you cliché's
I will not pretend to know of all your pain
Just when you cannot, then I will hold out faith, for you
It's going to be alright
It's going to be alright
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