Ryan's first day of day camp sponsored by the Baylor Autism Resource Center was today! We have been looking forward to this... and that's the understatement of the century. It's also one of those days I'm thrilled to be married to Eric. Not many men would hurry to get out of bed and through the shower by 6:15 so that you can run at 6:30. Someone had to be here when the kids got up, and Eric didn't have to be at school until 7:50 or so. Sorry ladies, he's taken.
Anyway, we managed to make it out of the house a wee bit later than I'd planned. The boys had a cereal bar and milk, and I managed to grab some coffee as I stuffed extra diapers, straw cups with water, a box of off-brand teddy grahams, and my shopping list in my giant pink backpack. I let Mae sleep until the last second, and after diapering, slipping a comfy knit dress over her head, and grabbing another pigtail holder and some sandals she was pretty much ready to go. Oh crud... medicine... that nasty white liquid down Mae and Ryan, and then it's time to start the kiddie caravan to the, well, to the caravan.
We made it to campus right as it was time to get started. I'd thought it was funny that there were no forms... and there they were. So after Ryan was contentedly with his new friend (we'll call her K), I boxed Richie in on the steps and filled out the paperwork. As I started to fill out the forms, I could hear meltdowns all around me. I could hear a grandmother behind me, asking questions about her form. I could hear mothers waiting to leave until they couldn't see their precious ones anymore. I heard one boy ask one of the counselors "How old are you?" and the counselor answered "22". Then the camper giggled, saying "I'm 14!" and scampered off with his group.
These settings, just like the Autism Walk, make me choke up every time. The students who work with the campers are great, but that's not it. It's being in close proximity with so many others who get it. So many others who know that just because their child looks normal (whatever normal is), and their age may suggest being able to walk in a line without getting lost, they must be watched and at times held onto. They know the sick feeling that flares straight from the heart as the words "where's ____?!?" fly from them feverishly as they look about. They also know how hard it is to trust that it'll be ok. It's comfortable. Finally. Comfortable. No judgement. No one looking at you like a circus freak. And the students? Totally thrilled to see Ryan. Totally. No worries, just when to be back.
Usually that wouldn't cut it for me... if someone says "oh, he'll be fine" I'm learning to take that as a red flag... especially if it interrupts my explanation of who he is, his limitations, and things he needs to be safe. But these people are trained, they remember Ryan and know his name before he gets his nametag. No one calls him "Eric", his real first name. He's Ryan. Instantly, three of the grad students were around him, gushing about how awesomely cute he is in his glasses... three beautiful college girls gushing over him, and he's all about finding an elevator. That's my boy!
So Richie, Mae and I went to the big swing hanging from one of the old trees on campus, and we just sat swinging, watching people for a few minutes. After a bit, Richie decided it was time to go see the bears. Way, way cool... they were out playing and eating! One even walked over and pretty much touched Richie's face through the glass. I'm sure she was thinking "snack" but Richie was utterly impressed. After a trip to the grocery store (complete with awesome red race-car cart, I must add), we came back, changed diapers in the back of the van, and headed back to get Ryan. He was laying on the ground in a tunnel-like thing between the buildings, yelling to test the sound. When he saw me, he smiled and ran to me, gushing about how much fun it was and how cool K is and oh my gosh mom tomorrow we're gonna...
Nope. Just kidding. He saw me, but wasn't terribly impressed with my presence. He didn't scream at the sight of us, so that's good, right? K's description of his day was that he did wonderfully, had a great time, and that they need to wear something we don't care about tomorrow because they're going to tye-dye. Oh, and a couple of dollars to spend would be good, because they're taking a trip to the SUB, mostly for the older kids to learn how to order things. The little kids can buy something if they want. Cool. After mumbling something resembling thank you and K's name, we were off.
Once in the van and on our way home, I asked about his day. "Did you have fun?" Silence. "Do you like camp?" More silence. "What did you do today?" Nothing. But for once, that's fine. I'd love to hear his description of the day, but I likely won't. But I know he had a great time... I trust the BARC students, and I know the look on his face... and I know the sound of NO screaming when the littles and I walked up.
So very proud of you, little Ryan! No fight to go with K, no fight to leave. I meant to pack lunches, but instead grabbed a snack for the kids at the last minute, and no fight over not having his beloved pb&j. We were home in time to relax and catch "Finding Nemo" again before Daddy got home.
Richie, who I am also incredibly proud of, put himself to bed for a nap, complete with Snoopy. Mae is sitting next to me on the couch, flipping through a Thomas book.
My kids rock. I may not get everything right... I may be messing up and dropping the ball more often than not, but God is blessing our family more than we dreamed. Just having these three sweet, precious ones in my life means we're blessed beyond measure. But not that long ago we wrung our hands over the price of therapy and the distance. Now we not only have therapy, but we won an ipad in a raffle, have therapy we can afford, a cool camp experience, and even when it looks like there's no way we can afford to do the things we need to do, it happens. The money, the equipment, the time, the patience... it all comes. It comes in opportunities, it comes in the generosity of others. But it comes. Just when I've thought I "made it happen" by something like whittling the grocery bill, cutting corners here and there... God gives. And when it's all said and done, we have what we need. If we don't have something, we likely didn't need it or it wasn't right in the first place. All I can say is THANK YOU LORD!
Now if I can remember the grotty clothes and money for tomorrow...
Stay tuned for tomorrow's camp update. We're there all week! And tomorrow, Daddy gets to go.
Monday, June 6, 2011
Thursday, June 2, 2011
Richie-roo, Birthday Dude!
Three years ago, shortly after 8:00 AM, Richard Allen Senzig made his debut in an operating room in Waco. It was fun! I was giggling, Eric was nervously giggling, and the doctor and the anesthesiologist were cracking little one-liners back and forth... perfect setting for our little entertainer to enter the world. His birth was so easy and no-biggie that as they wheeled me into recovery I was talking about names for the next one! Richie loves Shaun the Sheep, Thomas and Friends, Elmo, and is caaa-razy about his big brother. He does just about everything he can to be just like big bro, right down to stimming! I've seen him take the same toy Ryan plays with, put it in the same place and attempt to play with it the same way. It always ends up with the same result... doesn't last long, and Richie winds up with this "what in the world does he see in this" look on his face.
I'll never forget the first time Richie attempted to be like Ryan. A couple of years ago, Ryan was super-into banging his head when he was upset. We lived in a duplex then, and it had hardwood floors (don't get me started on that house... it was just a step or two above camping for a long time). We had an area rug in the living room, and once when Richie was about 18 months old, he decided to throw a fit and bang his head just like he'd seen brother do. He started with that angry toddler look on his face, but after one bang of his head on that just-barely carpeted hardwood floor, he looked at me like "holy cow! That HURT!"
That was the beginning of my realization that we have a lot of work to do in making sure Richie is Richie, Ryan is Ryan, and to do the best we can making sure we parent to both in a meaningful, appropriate way. There are things that Ryan can't handle at six that Richie could handle at two. Not understanding this can get us in trouble.
The Christmas I was pregnant with Maelynn, my sister got Ryan the coolest little train. He was black, came with a coal tender, and his name was Hiro. Ryan was so thrilled with his new train that he wanted to sleep with it that night. Well, Richie gets to sleep with toys... why not? So that night at Nanny's, I tucked Ryan into bed, all warm and fuzzy that my son finally attached to something that wasn't a drumstick. He wanted to snuggle Hiro, I thought, and how sweet! He's four. Good grief, let him sleep with the toy.
It wasn't sweet for long. The obsession with Hiro started quickly, but died hard. He was so attached to that train that he wouldn't go to the bathroom, eat, sleep, anything without Hiro in his hand. The stickers wore off. He didn't play with Hiro much, mostly he just held him and twisted his wrist, clicking the rods on Hiro's wheels. At night, he'd begun to click Hiro to keep himself awake. The only time he'd put Hiro down was to get on the school bus, and that was a fight. Oh, and if Richie touched, looked at, or even walked in the room, Ryan screamed bloody murder. It was all about Hiro. "Wantcha Hiro?!" I can still hear his desperate pleadings when we finally had to wean him from his beloved train.
The process was long and there were many, many screamy nights and days over that stinkin' black train, but we finally got Ryan off Hiro. Lesson learned. Now we're careful to set boundaries about how and where Ryan can play with favorite toys. Drumsticks are only allowed in the living room, and can only be played on the practice pad, not on the furniture, the TV, or people (yes, he tried). Ipad is only two or three times a day, sitting down, for 15 minutes. If he starts stimming profusely, he has to change apps. We've even deleted apps because all he did was stim on them! Sounds mean, huh. Not really if you know Ryan.
Take your average alcoholic. Need to keep him busy for a while? Tell you what... I need to keep you out of my hair, so here's a fifth of Jack. Stay busy for a while, please.
WHAAA?!?!
Really, that's about as caring as handing Ryan the ipad and saying "here you go. I need to get some housework done, so knock yourself out." At the end of even thirty minutes, he'll be screaming at the ipad, at you, at his siblings, slapping his head and ears, and oh, have a great time taking it away. I don't understand why, but I know this is how it is. I've seen him too many times, confused, shaking and crying, unable to stop fiddling with it.
We learned these things by trial and error... by fire. For a long time Ryan's teacher couldn't use their district-provided ipads because Ryan melted down completely as soon as one came out. They had to take turns, because there were about six kids in a class with two ipads. We've gradually helped Ryan learn to play for fifteen minutes, then give the ipad to Richie for fifteen minutes, then (unless Mae wants a turn, and she's done it too) it goes back to Mommy and Daddy's room.
Lots of things are like this at our house. Richie and even Mae can handle a little more indulgence and a little more change than Ryan at this point. Kids all still need boundaries, but sometimes in our world the boundaries can be relaxed a bit when brother's not around. There are things we just can't go and do. Waiting in line for things can be so stressful. The standing still is killer for Ryan. Yes, this means there are things that the whole family just shouldn't participate in for Ryan's safety and sanity. Yes, this does mean we run the risk of Richie and Mae resenting Ryan for what they can't do. But if we're careful, if we take care to treat Richie and Mae in ways that are appropriate and help them understand, we think that we also run the risk of our kids being incredibly understanding, caring, loving people. People who learned at an early age that no, life isn't fair, and we aren't entitled to what we want when we want it. They were born into this family... into a family with a special needs child... just like we were. We believe that they, with guidance, will grow into who God made them to be, not resentful but loving and accepting of their brother and other special needs folks.
So far, Richie is awesome with this. He adores his brother, and loves hanging out with brother's class at school. This morning, when Richie had a choice between eating his birthday donuts or being with his brother, he chose to get down and run back to see brother, and on the way I heard the sweetest thing. In his sweet, newly three-year-old voice, Richie hollered "I love you, Yyan!" as he ran. Richie has been screamed at countless times, hit over the head with several toys, sat on, shoved down, and for now, every time it's okay... as long as it's Ryan. I'm sure that's not the end of it.
We have a long road of balancing act ahead. But for now, Richie's sweet smile and jabbery conversation makes me smile. He is a relief, a breath of fresh air, a beautiful, blue-eyed, crazy-golden-blonde haired little angel who dances with Shaun the Sheep, loves to watch and read Thomas, work puzzles, and play ipad games. He loves his sister, taking her binky out of her mouth to kiss her good-night, then popping it right back in. He's a great helper, and has learned to get the wipes for his forgetful mommy when she's left them in another room again. He's painfully shy at times, and tends to get a little dramatic when he's in the mood and doesn't get his way. He loves to nap once he's already asleep, and (bless him) wakes up like his mommy. He's smart, loves to count, and loves to have books read to him. He loves Good Dog, Carl because he can almost read them himself... but could never love another dog more than Jedi. He's amazed by the birds who have had babies outside our kitchen window, asking mommy to "pick up a Richie" and "Richie look at the birdies". He loves to feed his sister, too. He'd rather feed his ice cream to her than eat it himself.
Richard A, Richie-roo, Richie-rooter baby duder, Dancin' Richie Rooter... you're a dream of a son, little brother and big brother, and we love you so much! You're an amazing little man and we can't wait to see the man God has for you to be... but don't get in a big hurry to grow up... you're awfully cute and such a big blessing just the way you are. And you are such a wonderful gift from the Lord!
I'll never forget the first time Richie attempted to be like Ryan. A couple of years ago, Ryan was super-into banging his head when he was upset. We lived in a duplex then, and it had hardwood floors (don't get me started on that house... it was just a step or two above camping for a long time). We had an area rug in the living room, and once when Richie was about 18 months old, he decided to throw a fit and bang his head just like he'd seen brother do. He started with that angry toddler look on his face, but after one bang of his head on that just-barely carpeted hardwood floor, he looked at me like "holy cow! That HURT!"
That was the beginning of my realization that we have a lot of work to do in making sure Richie is Richie, Ryan is Ryan, and to do the best we can making sure we parent to both in a meaningful, appropriate way. There are things that Ryan can't handle at six that Richie could handle at two. Not understanding this can get us in trouble.
The Christmas I was pregnant with Maelynn, my sister got Ryan the coolest little train. He was black, came with a coal tender, and his name was Hiro. Ryan was so thrilled with his new train that he wanted to sleep with it that night. Well, Richie gets to sleep with toys... why not? So that night at Nanny's, I tucked Ryan into bed, all warm and fuzzy that my son finally attached to something that wasn't a drumstick. He wanted to snuggle Hiro, I thought, and how sweet! He's four. Good grief, let him sleep with the toy.
It wasn't sweet for long. The obsession with Hiro started quickly, but died hard. He was so attached to that train that he wouldn't go to the bathroom, eat, sleep, anything without Hiro in his hand. The stickers wore off. He didn't play with Hiro much, mostly he just held him and twisted his wrist, clicking the rods on Hiro's wheels. At night, he'd begun to click Hiro to keep himself awake. The only time he'd put Hiro down was to get on the school bus, and that was a fight. Oh, and if Richie touched, looked at, or even walked in the room, Ryan screamed bloody murder. It was all about Hiro. "Wantcha Hiro?!" I can still hear his desperate pleadings when we finally had to wean him from his beloved train.
The process was long and there were many, many screamy nights and days over that stinkin' black train, but we finally got Ryan off Hiro. Lesson learned. Now we're careful to set boundaries about how and where Ryan can play with favorite toys. Drumsticks are only allowed in the living room, and can only be played on the practice pad, not on the furniture, the TV, or people (yes, he tried). Ipad is only two or three times a day, sitting down, for 15 minutes. If he starts stimming profusely, he has to change apps. We've even deleted apps because all he did was stim on them! Sounds mean, huh. Not really if you know Ryan.
Take your average alcoholic. Need to keep him busy for a while? Tell you what... I need to keep you out of my hair, so here's a fifth of Jack. Stay busy for a while, please.
WHAAA?!?!
Really, that's about as caring as handing Ryan the ipad and saying "here you go. I need to get some housework done, so knock yourself out." At the end of even thirty minutes, he'll be screaming at the ipad, at you, at his siblings, slapping his head and ears, and oh, have a great time taking it away. I don't understand why, but I know this is how it is. I've seen him too many times, confused, shaking and crying, unable to stop fiddling with it.
We learned these things by trial and error... by fire. For a long time Ryan's teacher couldn't use their district-provided ipads because Ryan melted down completely as soon as one came out. They had to take turns, because there were about six kids in a class with two ipads. We've gradually helped Ryan learn to play for fifteen minutes, then give the ipad to Richie for fifteen minutes, then (unless Mae wants a turn, and she's done it too) it goes back to Mommy and Daddy's room.
Lots of things are like this at our house. Richie and even Mae can handle a little more indulgence and a little more change than Ryan at this point. Kids all still need boundaries, but sometimes in our world the boundaries can be relaxed a bit when brother's not around. There are things we just can't go and do. Waiting in line for things can be so stressful. The standing still is killer for Ryan. Yes, this means there are things that the whole family just shouldn't participate in for Ryan's safety and sanity. Yes, this does mean we run the risk of Richie and Mae resenting Ryan for what they can't do. But if we're careful, if we take care to treat Richie and Mae in ways that are appropriate and help them understand, we think that we also run the risk of our kids being incredibly understanding, caring, loving people. People who learned at an early age that no, life isn't fair, and we aren't entitled to what we want when we want it. They were born into this family... into a family with a special needs child... just like we were. We believe that they, with guidance, will grow into who God made them to be, not resentful but loving and accepting of their brother and other special needs folks.
So far, Richie is awesome with this. He adores his brother, and loves hanging out with brother's class at school. This morning, when Richie had a choice between eating his birthday donuts or being with his brother, he chose to get down and run back to see brother, and on the way I heard the sweetest thing. In his sweet, newly three-year-old voice, Richie hollered "I love you, Yyan!" as he ran. Richie has been screamed at countless times, hit over the head with several toys, sat on, shoved down, and for now, every time it's okay... as long as it's Ryan. I'm sure that's not the end of it.
We have a long road of balancing act ahead. But for now, Richie's sweet smile and jabbery conversation makes me smile. He is a relief, a breath of fresh air, a beautiful, blue-eyed, crazy-golden-blonde haired little angel who dances with Shaun the Sheep, loves to watch and read Thomas, work puzzles, and play ipad games. He loves his sister, taking her binky out of her mouth to kiss her good-night, then popping it right back in. He's a great helper, and has learned to get the wipes for his forgetful mommy when she's left them in another room again. He's painfully shy at times, and tends to get a little dramatic when he's in the mood and doesn't get his way. He loves to nap once he's already asleep, and (bless him) wakes up like his mommy. He's smart, loves to count, and loves to have books read to him. He loves Good Dog, Carl because he can almost read them himself... but could never love another dog more than Jedi. He's amazed by the birds who have had babies outside our kitchen window, asking mommy to "pick up a Richie" and "Richie look at the birdies". He loves to feed his sister, too. He'd rather feed his ice cream to her than eat it himself.
Richard A, Richie-roo, Richie-rooter baby duder, Dancin' Richie Rooter... you're a dream of a son, little brother and big brother, and we love you so much! You're an amazing little man and we can't wait to see the man God has for you to be... but don't get in a big hurry to grow up... you're awfully cute and such a big blessing just the way you are. And you are such a wonderful gift from the Lord!
Wednesday, June 1, 2011
One of these days...
This has been one of those days.
It's one of those days where I have to dig deep to keep moving. It's one of those days when you could swear that every last thing you touch is destined to turn to junk. One of those days where the frustration is so acute that your heart stays in your stomach all day.
The start wasn't terrible. I actually managed to get out of bed in time to run before Eric left for work. Finally managed to get around the .4 miles (didja see that dot BEFORE the 4?) four times for the first time in a while. Then almost as soon as I walked in, Ryan is not a happy camper. He's refused his breakfast and is saying "I feel sick." Great. One of the keys of understanding Ryan is knowing that there are phrases he learned by rote and tends to throw around. "I feel sick" can mean "I'm tired". It can also mean he doesn't like what you gave him to eat, doesn't understand what's going on and is anxious, or it can mean nothing. Gotta love echolalia.
When asked "what hurts" and "what feels sick" and about ten other variations of this, my senses finally come around to realizing that the one time he's answered this question doesn't mean he can always answer it. He felt a teensy bit warm, but not enough to warrant the fight of the thermometer (yes, any kind... I've tried and even the ear one and the one that goes across his head is a huge fit) and certainly not enough to call the doctor. I mean, we love you Dr. M, but we were just there yesterday! So I asked if he'd like some medicine to make him feel better... maybe he has a headache? He can't tell me, so a little ibuprofen can't hurt. After searching for the medicine cup, I decided it wasn't worth it and grabbed a shot glass from an old Oklahoma institution... and oh my word, I'm not kidding you... he flipped out over the medicine being in the shot glass. Once he got the medicine down, though, he didn't want to give the glass back! I think he decided he liked the way the cool glass felt, and it was heavy. Love my sensory junkie.
So we continue through the day... I put on a video long enough to have my version of a quiet time, and after that I need to start the journal entry for the day. One of the biggest parts of my summer plans is to track the fits, goals, and just the days in a spiral notebook. The idea is that maybe a pattern will emerge, giving us another key or piece to the puzzle. So I get those things out of the way, accompanied by a cup of coffee. Things have calmed now... I haven't been screamed or fussed at in a few minutes, and I figure that maybe Elmo will again be the hero of my hygeine and keep the kids occupied while I shower quickly. A quick glance to the living room and they're being so good... and I smell like a huge armpit. So I do the famous five-or-less shower, and before I can throw shorts and a t-shirt on they're descending upon me. Can't find shorts... oh yeah, they're still in the laundry basket. Run to the kitchen to grab them, and there is a huge brown puddle on the kitchen table.
Yep, I left my coffee out.
And Mae's a climber.
Best part is that this journal that I've begun with all my goals, lists of what Ryan and Richie *can* do as well as the things I want to help them learn, where I've recorded thankfully just the last couple of days as a start, was lying vulerably on the kitchen table. Now it was learning to swim in coffee with too much creamer.
That just felt insulting.
I'd like to say I managed to choke down the tears and swallow the imminent mommy-meltdown, but the truth is there wasn't time for me to melt down, and I honestly didn't have the energy. The kids all needed to be dressed, and it was past time for that. So by the time I got Ryan, Richie, and Mae dressed, the two diapers changed and rinsed, I was able to calmly rip out the affected pages, let a few dry and start over. The rest of the day has been full of dropped this, broken that. Messed up this, inferior job on that. And education? Pssccht. We worked a puzzle and read a book, but not with Ryan.
It's been one of those days where every time I ask Ryan a question he answers with an emphatic "MMMM" or "UUUUUHH" type of fussy scream, sometimes with his mouth open, sometimes closed. That "just leave me alone today" sound. He doesn't want anyone around, especially his siblings. He was lying on the couch this morning and Mae climbed up with him, just wanting to snuggle her big brother (not that he's ever let her before, but gotta love her optimism). He promptly shoved her into the floor, not even remotely gently. She pretty much landed on her head. She was scared and upset at the fall, and I was scared and upset at the shove that landed her there.
I wish I could say I was patient and kind every time he reacted that way, but I'd be lying. If nothing else, he felt my frustration or saw it on my face. And I hate that. But the truth is that I'm human, and I can only take so much of offering someone something I know they like, then being immediately yelled at for speaking in the first place. Sick or not, he gets in these moods, and all I can do is keep calmly saying and signing "say it, Ryan" over and over. Eventually... usually... he either calms down or says what he wanted. More often than not he's just calmed down, at least for five minutes.
So all day, instead of the activities I'd planned, we just tried to keep him from screaming too much. He was pretty much content until this afternoon, and it was obvious this time that he does have a fever. Under his arm... only one I could find... 102.4. Ouch. He really was sick this time.
The good news is he managed to tell me that he wasn't feeling well! The bad news is I've heard "I feel sick" so many times that I almost didn't listen. The other bad news is he still can't tell me what hurts or feels sick. I've gone through all the charades and versions I can think of, and I still don't know where it hurts. We called the doctor and are awaiting a call back, because our doctor is cool like that... and hopefully it's just an ear infection again. That seems to be what happens to Ryan this time of year.
But oh, how I long to hear those three words... "My ear hurts." He will ask for the people train, Miss Staci, to go to Waco, to go to Baylor, to go to the train station... he can quote half of Finding Nemo, for cryin' out loud, but he can't tell me his ear hurts!!! How desperately I want to be able to comfort my son, to stop his hurting, or at least to know where to start. He is so amazing, so smart, so loving and sweet, and yet so scared and confused at something as simple as a band-aid. I'm watching him now, with a dose of ibuprofen on board, walking around sticking the thermometer on daddy's neck, then Richie's... not telling them what he's doing, mind you... but he's caring for them in the only way he knows how.
I don't know why God trusted Eric and I with this young man, but I do know beyond a doubt that God loves us, and He loves Ryan and Richie and Maelynn... and we're all knit together in this family for a good reason. I can tell you one thing... I can't do it alone. The frustrations are too great. The task is too huge. I've heard recently someone say that this Autism thing isn't a sprint, it's a marathon. Pretty accurate... but blindfold yourself, drop yourself in the middle of a huge city, and go find a needle in the street. Every once in a while, you get to peek out from the blindfold... and people come along to tell you you're going the right way. Some don't, but most do. I remember when Ryan used to wake up screaming every morning. That's only been a little over a year and a half ago. It's hard to want to get out of bed when you're met with that, knowing that's mostly what you're going to get all day. It's so much better than it was then. But it's still hard.
Precious Lord, take my hand
Lead me on, let me stand
I am tired, I am weak, I am worn
Through the storm, through the night
Lead me on to the light
Take my hand precious Lord, lead me home
When my way grows drear
Precious Lord linger near
When my life is almost gone
Hear my cry, hear my call
Hold my hand lest I fall
Take my hand precious Lord, lead me home
When the darkness appears
And the night draws near
And the day is past and gone
At the river I stand
Guide my feet, hold my hand
Take my hand precious Lord, lead me home
Precious Lord, take my hand
Lead me on, let me stand
I'm tired, I'm weak, I'm lone
Through the storm, through the night
Lead me on to the light
Take my hand precious Lord, lead me home
-Rev. Thomas A. Dorsey (1899-1993)
I learned that song in high school, and it still helps me speak when I'm too worn, weary and frazzled to begin to explain. I don't have the answers, and most of the time I don't even have the questions. The only thing that is obvious is that we have to keep going. We have to keep improving how we do things, how we assess situations, how we understand, and keep learning. We have to keep DOING it, not trying (thanks, Yoda).
I'm gonna start by scraping myself up, going to my coffee-stained journal, and scrawling how the rest of Ryan's day was. I'm gonna clean up after dinner so I won't have to do it tomorrow. I'm gonna be okay with throwing out the academic, therapeutic parts of days when they're not fitting what Ryan needs. I'm gonna keep thanking God for all we have, and although I mess up so much and have so little figured out, I'm gonna keep doing all I can to be the best steward of this family I can.
Because it's going to be alright. I know it is. It's actually going to be better than alright.
Because God promises His plan, and that's WAY better than alright!
It's one of those days where I have to dig deep to keep moving. It's one of those days when you could swear that every last thing you touch is destined to turn to junk. One of those days where the frustration is so acute that your heart stays in your stomach all day.
The start wasn't terrible. I actually managed to get out of bed in time to run before Eric left for work. Finally managed to get around the .4 miles (didja see that dot BEFORE the 4?) four times for the first time in a while. Then almost as soon as I walked in, Ryan is not a happy camper. He's refused his breakfast and is saying "I feel sick." Great. One of the keys of understanding Ryan is knowing that there are phrases he learned by rote and tends to throw around. "I feel sick" can mean "I'm tired". It can also mean he doesn't like what you gave him to eat, doesn't understand what's going on and is anxious, or it can mean nothing. Gotta love echolalia.
When asked "what hurts" and "what feels sick" and about ten other variations of this, my senses finally come around to realizing that the one time he's answered this question doesn't mean he can always answer it. He felt a teensy bit warm, but not enough to warrant the fight of the thermometer (yes, any kind... I've tried and even the ear one and the one that goes across his head is a huge fit) and certainly not enough to call the doctor. I mean, we love you Dr. M, but we were just there yesterday! So I asked if he'd like some medicine to make him feel better... maybe he has a headache? He can't tell me, so a little ibuprofen can't hurt. After searching for the medicine cup, I decided it wasn't worth it and grabbed a shot glass from an old Oklahoma institution... and oh my word, I'm not kidding you... he flipped out over the medicine being in the shot glass. Once he got the medicine down, though, he didn't want to give the glass back! I think he decided he liked the way the cool glass felt, and it was heavy. Love my sensory junkie.
So we continue through the day... I put on a video long enough to have my version of a quiet time, and after that I need to start the journal entry for the day. One of the biggest parts of my summer plans is to track the fits, goals, and just the days in a spiral notebook. The idea is that maybe a pattern will emerge, giving us another key or piece to the puzzle. So I get those things out of the way, accompanied by a cup of coffee. Things have calmed now... I haven't been screamed or fussed at in a few minutes, and I figure that maybe Elmo will again be the hero of my hygeine and keep the kids occupied while I shower quickly. A quick glance to the living room and they're being so good... and I smell like a huge armpit. So I do the famous five-or-less shower, and before I can throw shorts and a t-shirt on they're descending upon me. Can't find shorts... oh yeah, they're still in the laundry basket. Run to the kitchen to grab them, and there is a huge brown puddle on the kitchen table.
Yep, I left my coffee out.
And Mae's a climber.
Best part is that this journal that I've begun with all my goals, lists of what Ryan and Richie *can* do as well as the things I want to help them learn, where I've recorded thankfully just the last couple of days as a start, was lying vulerably on the kitchen table. Now it was learning to swim in coffee with too much creamer.
That just felt insulting.
I'd like to say I managed to choke down the tears and swallow the imminent mommy-meltdown, but the truth is there wasn't time for me to melt down, and I honestly didn't have the energy. The kids all needed to be dressed, and it was past time for that. So by the time I got Ryan, Richie, and Mae dressed, the two diapers changed and rinsed, I was able to calmly rip out the affected pages, let a few dry and start over. The rest of the day has been full of dropped this, broken that. Messed up this, inferior job on that. And education? Pssccht. We worked a puzzle and read a book, but not with Ryan.
It's been one of those days where every time I ask Ryan a question he answers with an emphatic "MMMM" or "UUUUUHH" type of fussy scream, sometimes with his mouth open, sometimes closed. That "just leave me alone today" sound. He doesn't want anyone around, especially his siblings. He was lying on the couch this morning and Mae climbed up with him, just wanting to snuggle her big brother (not that he's ever let her before, but gotta love her optimism). He promptly shoved her into the floor, not even remotely gently. She pretty much landed on her head. She was scared and upset at the fall, and I was scared and upset at the shove that landed her there.
I wish I could say I was patient and kind every time he reacted that way, but I'd be lying. If nothing else, he felt my frustration or saw it on my face. And I hate that. But the truth is that I'm human, and I can only take so much of offering someone something I know they like, then being immediately yelled at for speaking in the first place. Sick or not, he gets in these moods, and all I can do is keep calmly saying and signing "say it, Ryan" over and over. Eventually... usually... he either calms down or says what he wanted. More often than not he's just calmed down, at least for five minutes.
So all day, instead of the activities I'd planned, we just tried to keep him from screaming too much. He was pretty much content until this afternoon, and it was obvious this time that he does have a fever. Under his arm... only one I could find... 102.4. Ouch. He really was sick this time.
The good news is he managed to tell me that he wasn't feeling well! The bad news is I've heard "I feel sick" so many times that I almost didn't listen. The other bad news is he still can't tell me what hurts or feels sick. I've gone through all the charades and versions I can think of, and I still don't know where it hurts. We called the doctor and are awaiting a call back, because our doctor is cool like that... and hopefully it's just an ear infection again. That seems to be what happens to Ryan this time of year.
But oh, how I long to hear those three words... "My ear hurts." He will ask for the people train, Miss Staci, to go to Waco, to go to Baylor, to go to the train station... he can quote half of Finding Nemo, for cryin' out loud, but he can't tell me his ear hurts!!! How desperately I want to be able to comfort my son, to stop his hurting, or at least to know where to start. He is so amazing, so smart, so loving and sweet, and yet so scared and confused at something as simple as a band-aid. I'm watching him now, with a dose of ibuprofen on board, walking around sticking the thermometer on daddy's neck, then Richie's... not telling them what he's doing, mind you... but he's caring for them in the only way he knows how.
I don't know why God trusted Eric and I with this young man, but I do know beyond a doubt that God loves us, and He loves Ryan and Richie and Maelynn... and we're all knit together in this family for a good reason. I can tell you one thing... I can't do it alone. The frustrations are too great. The task is too huge. I've heard recently someone say that this Autism thing isn't a sprint, it's a marathon. Pretty accurate... but blindfold yourself, drop yourself in the middle of a huge city, and go find a needle in the street. Every once in a while, you get to peek out from the blindfold... and people come along to tell you you're going the right way. Some don't, but most do. I remember when Ryan used to wake up screaming every morning. That's only been a little over a year and a half ago. It's hard to want to get out of bed when you're met with that, knowing that's mostly what you're going to get all day. It's so much better than it was then. But it's still hard.
Precious Lord, take my hand
Lead me on, let me stand
I am tired, I am weak, I am worn
Through the storm, through the night
Lead me on to the light
Take my hand precious Lord, lead me home
When my way grows drear
Precious Lord linger near
When my life is almost gone
Hear my cry, hear my call
Hold my hand lest I fall
Take my hand precious Lord, lead me home
When the darkness appears
And the night draws near
And the day is past and gone
At the river I stand
Guide my feet, hold my hand
Take my hand precious Lord, lead me home
Precious Lord, take my hand
Lead me on, let me stand
I'm tired, I'm weak, I'm lone
Through the storm, through the night
Lead me on to the light
Take my hand precious Lord, lead me home
-Rev. Thomas A. Dorsey (1899-1993)
I learned that song in high school, and it still helps me speak when I'm too worn, weary and frazzled to begin to explain. I don't have the answers, and most of the time I don't even have the questions. The only thing that is obvious is that we have to keep going. We have to keep improving how we do things, how we assess situations, how we understand, and keep learning. We have to keep DOING it, not trying (thanks, Yoda).
I'm gonna start by scraping myself up, going to my coffee-stained journal, and scrawling how the rest of Ryan's day was. I'm gonna clean up after dinner so I won't have to do it tomorrow. I'm gonna be okay with throwing out the academic, therapeutic parts of days when they're not fitting what Ryan needs. I'm gonna keep thanking God for all we have, and although I mess up so much and have so little figured out, I'm gonna keep doing all I can to be the best steward of this family I can.
Because it's going to be alright. I know it is. It's actually going to be better than alright.
Because God promises His plan, and that's WAY better than alright!
Tuesday, May 31, 2011
Resolve and Band
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?!
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?!
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!
Subscribe to:
Posts (Atom)
