DISCLAIMER... It's been a long, hard, loud, nerve-wracking day. Really having to reach to my toes and scrape the bottom of the barrel of my faith to get through. This post is a culmination of thoughts throughout the day, and at varying degrees of frustration, borne out of a day of just that. I can promise no inspiration today, but I can promise honesty.
If you read that and want to continue, hang on. But don't say I didn't warn you.
After a long time of feeling guilty, inexcusably inadequate, and at times just plain stupid, I've come to a conclusion. A few, actually. Since you've all been so sweet and encouraging to read my stuff all this time, I'm sharing them with you. Most of these things are based on experience. Too many on bad ones. This is all stuff I haven't mastered, will likely never master, but I'm gonna try with all I have. This autism mess hurts too much to not try. Maybe you can remind me of one or more someday? Ah, thanks. I knew you'd understand.
First, I am first and foremost God's child. I am a believer in the sovreignty of God, and therefore choose to rest in that. He has chosen me to live my life and all of whatever comes into it. There will be people who have issues with this, and they are welcome to have them. Spare me the conspiracy talk about whether or not He exists... you ask me how I know He lives? He lives within my heart. I say that on the other side of a lot of hard times, and in the midst of an everyday hard time.
Second, I am Eric's wife. I promised to love and care for him through it all, and I'll keep clinging to that promise. We are together for a reason, and we will contiue to work together through all the craziness and end up at the end of the night, on the couch, finding Eric and Crystal again. Mommy and Daddy will be back soon enough. Sure, we spend time talking about the kids. But hey, that's what we're doing right now. Kids and band.
Third, I should not apologize for or deny what is first. I will not apologize for WHO is first. Or second, or third. And if I really mean all that, I cannot separate the sovreignty of God from every part of my life. If I truly believe what I say I believe, I believe without a doubt that Ryan is who he is for a reason. I wish it was easier. I wish I had the answers. But I don't. I don't know why. I don't know why it's so hard to transition sometimes. I don't know why some of your kids suffer from seizures and Ryan's been spared. I don't know why the meltdowns happen, or what causes autism. All I know is what gets me through. And that is that I know that there is a plan for my kids... all of them... just like there is for me. Jeremiah 29:11 has been a staple in my mind and heart through tons of things..."I know the plans I have for you, says the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future." This does not at all mean that I don't think we should research causes and cures, just the opposite! Study away! Share what we learn! But my hope and joy do not rest in the maybe of a promise of humans.
I will realize that everyone else's first, second, third, and so on are their choices, not mine. God did not put me here to fix everyone else, for I do not know what is best for anyone but me, and half the time I get that backward. If they ask what I think, I will answer gently, out of love, or I will keep my piehole shut. If I'm ugly to you, smack me. Really, I know better.
I will seek to understand, not to judge. I will educate myself in matters, not base my decisions on emotion. Emotions can be deceitful and, when not weighed and balanced by truth, can do an amazing amount of damage.
I will do my best to be slow to speak, slow to anger with everyone... even those with whom I disagree. I will, however, admit when I disagree. Not my strongest point thus far in life, disagreeing.
I will trust that everyone is doing their best with what they were given.
I will not belittle, berate, bully, and be downright ugly to get my point across.
I realize that I fail. A lot. There is more undone on my to-do than I want to admit. I am not sure how to tell anyone to deal with meltdowns with Ryan, and I'm his mother, for cryin' out loud. And I do.
I will realize that failure is a large part of even the smallest success. Who can be a success without failing a little? I've heard that WD40 is called "WD40" because it was the fortieth... FORTIETH... formula that worked. Gotta keep trying.
There are days, like today, when due to taking care of everything else and everyone else, I will be in my nightgown at 2:08 in the afternoon, having not showered in an embarrassing amount of time. I will try to do better in the morning. If I do not do better in the morning, I will not feel bad.
I will ask my husband to watch the kids so I can shower and dress when he gets home, and I will not feel guilty. He loves me, he loves our children, and he cannot meet my needs if I hide them.
I will be thankful for a man who thinks I'm a knockout in my old, raggedy t-shirt nightgown and crazy hair. Even when he gets home at 5:30 and I'm still wearing it. I'll also be thankful that he trusts I've been doing my best, because he does.
I will do my best to let those who want to get it, it. I will thank the Lord, truly, that they wanted to try at the same time I thank Him for the people who do get it, for whatever reason. I will continue to be equally thankful for those who hug us, admitting they don't know how to help or what to do other than pray and be there to hear us.
I will try to remember that no one can ever fully understand everything that goes on here in a day and why it is so frustrating, yet so wonderful. Even others with ASD kids can't completely understand, although they come the closest.
I will remember that in any organization, any group of people, there will be differences of opinion. I will not be a victim of fear-mongering or guilt trips from any direction, for any reason, from anyone. I have enough guilt over the sheer amount of stuff I'm not keeping up with, thank you.
There will be times when others are insensitive, or even downright ugly. When given an opening, I will attempt to educate and enlighten. I will not, however, teach a pig to sing... it wastes your time and annoys the pig. I will not feel guilty if I miss an opportunity, I will simply walk forward, head up, heart open, and keep focusing on making my family's life the best it can be. Or I'll continue carrying my screaming six-year-old down the hall, smiling at everyone who's looking at us like we have three heads.
I will continue to pray that I never sound like I have it figured out, or I know what you should be doing. Or how you should be feeling. That is such a hurtful attitude full of distrust. God only knows, other than you, what you've really going on inside. Again, no judgement.
I will not compare my situation to yours, nor should you. We both have hard days, friend. Let's just help each other through them.
There will be days full of screaming for hours on end. Not every day, not all the time. But days like today when the meltdown lasts over two hours solid, Ryan asking in screams for the same thing over and over and over with machine-gun repetition for hours at a time... and I call my Mom intending to check on her, and wind up weathering it with her on the phone, holding my hand from hundreds of miles away... and in these times I will realize that I'm blessed beyond measure, even when I can't feel it.
To all of you in the ASD family, it's time to stand together. To reach out to help one another up, to pat backs, to help each other find a way to keep... or start... enjoying life. To magnify the amazing parts of our children, brothers, sisters, selves, friends, and try to help deal with the not-so-amazing. How? That's up to each of us individualy. But I do know that the majority of the blogs I read and the chatboards and comment boards I look at and comment on are there for just that. Sharing our experiences... the good, the bad, and the ugly. There are differences at times, but from what I've seen, they are handled with civility. And that's the way it should be. Because at the end of the day, whether you're a ditch-digger or hold a doctorate, make $20,000 a year or $100,000+, your experiences COUNT and they MATTER. No matter what anyone says. Whether you vaccinate or not. Whether you eat gluten and casien or not. Stay home or work. Home school, public school, or private school. We all just want our loved ones to be happy, safe, and comfortable. Out of pain, emotional and physical. Let's chuck the guit trips and stick together in any way we can.
I will recognize our limitations. I will also push them at times. I will keep trying to abolish "can't" from our vocabulary. Not yet? Sure. But can't ever? We have to believe we can overcome. The alternative isn't acceptable.
I can't (haha) say this enough. I will make mistakes. I will not do everything right. I haven't yet. But I will continue to do my best, because that's all the kids deserve. I will try to remember that seeing me deal with my worst is going to be a bigger lesson for the kids than what I did right. I will hug and apologize when necessary.
I will cry. I will curl up in my husband's arms, sobbing, when I can't take any more.
I will realize the ability to do that shows more strength than I realize.
I will continue to hold unswervingly to the hope I profess... for He who promised us is faithful. (Hebrews 10:23, strung-out mama paraphrased)
Showing posts with label Christian. Show all posts
Showing posts with label Christian. Show all posts
Thursday, August 11, 2011
Tuesday, August 2, 2011
The Tale of the Wrong Brush
This summer, I got stupid... er, I mean brave (such a fine line) and decided that I wanted to bite the bullet and start really making our new house ours. I've never had the privilege of painting a dwelling any color I want. After helping Mom paint at her house, and having visited a few times since then, it hit me on the way back... it's time. So after gathering supplies, gumption, and a game plan to keep the kids happy I hit it. Mae's room was one of the first. It's "fresh pink lemonade" and "quaint purple". The boys' room isn't yet begun, but their only suggestion when I asked what color was "Thomas" and that was from Richie. "bolt of blue lightning" was the closest. The bathroom is the shades closest to the ones Mom had that I could find... "morning rain" and "King Neptune blue". The day I was painting the bathroom, I'd just opened the "morning rain" and was refilling the paint tray when I had to get up and walk away for a second. After talking to Eric for a minute and taking care of whatever it was, I looked around.
Where's Maelynn?!
Eric went to the bathroom and flipped. She had taken the only brush she could find, dunked it in the paint can *all the way to the bottom* and was about to start slingin' when Daddy arrived! You could tell she wanted to help. "Okay, gonna help Mommy paint. There's the paint, now where's a brush... brush... hmm... there's a brush!" *dunk*
I laughed till I cried, took a picture with my phone and sent it to my Mom, knowing she'd love it. And she did. It wasn't a major cleanup effort. She didn't even get any on herself! That's my girl!
That's how it goes, though. When Ryan starts screaming, hitting himself, won't eat, starts crying, or saying something we can't understand, we try something. We look around for the nearest thing that looks like it will help, be it favorite toy, movie, or something much bigger like therapy, rethinking the plan, redoing the whole plan, throwing the plan out and staring over, blah blah blah... and we do this all day long. That looks like it'll work... only to see either no results, some results, or have it backfire and make it all worse.
Honestly, with trying to guide Ryan lately, I feel like I have no idea. I'm grasping at straws, groping in the dark with thick gloves on, desperate for something to work. But what do you do? We worked so hard on asking for things. We are so proud that he's better at that! Once you learn what a few things mean to him, like "pack your swimsuit" means "can we go swimming?" and just he fact that he does have some pronoun trouble, you can figure out what he wants. Problem, you ask?
What happens when the answer is no? What happens when you can't take him swimming? What happens when he wants to "go to the hotel" or "to the carousel" (his term for Morgan's Wonderland) or to Waco or to see Granny or Grammy and Grampy, and he wants it NOW? WHAT DO YOU DO? My child, my dear, precious, sweet baby that I held, nursed, rocked, cared for, and nurtured since the day he was born screams till a vein pops out on his neck and beats his chest and head! He makes sounds I can't describe... gutteral, screamy-squealy-growley noises that sound like a posessed pig. I cannot describe the sheer torment on his face. Sometimes all because I said no... often for no detectable reason. No, we do not just give him what he wants... really. I just can't describe it.
Just today I was on a chair (don't judge... I know... I have a ladder, and it's in the carport closet) painting in the kitchen. The littles were asleep, and Ryan was watching "elevator Toy Story" (Toy Story 2). Out of the silence he makes himself known wordlessly yet unmistakably, with one of his angry sounds. Nothing that I can tell is wrong. He sounded like he should be, but he was not bleeding. I want to know how to help. He had his glasses on, he had his shoes on and they were fine... I went down the list and all was well. After emphatically asking... pleading... with him to tell me what's wrong, stop screaming, something like that, two minutes later he's at it again. This time he woke his sister as he entered a meltdown that ended with me face in hands, falling completely apart into tears.
Then he walked over, stretched out his arms, hugged me... not backed up to me... HUGGED me, laying his head on my shoulder, arms around me, saying, "It's okay. It's alright." Over and over, while I cried and apologized for being so bad at this, he told me "It's okay. It's alright." I think he even said "Mommy" in there too.
A few days ago I read on another mommy blog a song I'd been listening to over and over, and hadn't thought of applying it to our situation. When I read it, I thought about it as she used it... they are waiting on her little girl to learn to speak. I thought of it that way, too, as applied to us. But tonight, as I consider the paintbrush story and Ryan's comfort, I realize I was wrong. I was thinking it's Eric and I who are waiting on Ryan to "work it out"... when in reality, he's being patient with us.
(in case you want to hear the song...)
Where's Maelynn?!
Eric went to the bathroom and flipped. She had taken the only brush she could find, dunked it in the paint can *all the way to the bottom* and was about to start slingin' when Daddy arrived! You could tell she wanted to help. "Okay, gonna help Mommy paint. There's the paint, now where's a brush... brush... hmm... there's a brush!" *dunk*
I laughed till I cried, took a picture with my phone and sent it to my Mom, knowing she'd love it. And she did. It wasn't a major cleanup effort. She didn't even get any on herself! That's my girl!
That's how it goes, though. When Ryan starts screaming, hitting himself, won't eat, starts crying, or saying something we can't understand, we try something. We look around for the nearest thing that looks like it will help, be it favorite toy, movie, or something much bigger like therapy, rethinking the plan, redoing the whole plan, throwing the plan out and staring over, blah blah blah... and we do this all day long. That looks like it'll work... only to see either no results, some results, or have it backfire and make it all worse.
Honestly, with trying to guide Ryan lately, I feel like I have no idea. I'm grasping at straws, groping in the dark with thick gloves on, desperate for something to work. But what do you do? We worked so hard on asking for things. We are so proud that he's better at that! Once you learn what a few things mean to him, like "pack your swimsuit" means "can we go swimming?" and just he fact that he does have some pronoun trouble, you can figure out what he wants. Problem, you ask?
What happens when the answer is no? What happens when you can't take him swimming? What happens when he wants to "go to the hotel" or "to the carousel" (his term for Morgan's Wonderland) or to Waco or to see Granny or Grammy and Grampy, and he wants it NOW? WHAT DO YOU DO? My child, my dear, precious, sweet baby that I held, nursed, rocked, cared for, and nurtured since the day he was born screams till a vein pops out on his neck and beats his chest and head! He makes sounds I can't describe... gutteral, screamy-squealy-growley noises that sound like a posessed pig. I cannot describe the sheer torment on his face. Sometimes all because I said no... often for no detectable reason. No, we do not just give him what he wants... really. I just can't describe it.
Just today I was on a chair (don't judge... I know... I have a ladder, and it's in the carport closet) painting in the kitchen. The littles were asleep, and Ryan was watching "elevator Toy Story" (Toy Story 2). Out of the silence he makes himself known wordlessly yet unmistakably, with one of his angry sounds. Nothing that I can tell is wrong. He sounded like he should be, but he was not bleeding. I want to know how to help. He had his glasses on, he had his shoes on and they were fine... I went down the list and all was well. After emphatically asking... pleading... with him to tell me what's wrong, stop screaming, something like that, two minutes later he's at it again. This time he woke his sister as he entered a meltdown that ended with me face in hands, falling completely apart into tears.
Then he walked over, stretched out his arms, hugged me... not backed up to me... HUGGED me, laying his head on my shoulder, arms around me, saying, "It's okay. It's alright." Over and over, while I cried and apologized for being so bad at this, he told me "It's okay. It's alright." I think he even said "Mommy" in there too.
A few days ago I read on another mommy blog a song I'd been listening to over and over, and hadn't thought of applying it to our situation. When I read it, I thought about it as she used it... they are waiting on her little girl to learn to speak. I thought of it that way, too, as applied to us. But tonight, as I consider the paintbrush story and Ryan's comfort, I realize I was wrong. I was thinking it's Eric and I who are waiting on Ryan to "work it out"... when in reality, he's being patient with us.
Oh love wash over a multitude of thingsThank you, Ryan, for being Jesus with skin on to mommy today. Thank you for always loving me no matter how clueless and frustrated I am. Just like I promised tonight, I will always keep trying to be a better mommy for you. Thank you, Lord, for new mercies, Your grace, and its sufficiency for my utter inadequacies... and for making me whole. Thank you, thank you, again and again... You are amazing!
Love wash over a multitude of things
Love wash over a multitude of things
Make us whole
There is a love that never fails
There is a healing that always prevails
There is a hope that whispers a vow
A promise to stay while we're working it out
So come with your love and wash over us
(When it was Over by Sara Groves)
(in case you want to hear the song...)
Friday, July 29, 2011
Heavenly Leveling
Back again... finally. We had a great week last week, full of things to do, full of opportunities. it was a wonderful week. The funny thing is it was so great I can't just spill it all in one post. So I'll start from the beginning... I hear it's a very good place to start.
We began our journey to San Antonio for the Texas Bandmasters' Association convention, held every summer. For the past couple of years something has come up and we've been forced to stay home. This time, we were kinda determined to go. We learned of a place called Morgan's Wonderland and decided that our family would love that.
We were so right!
We started to play pretty much immediately when we walked in. All the paths on all the playground equipment- which in itself is amazing- are more than wide enough for a wheelchair, and each play area is accessible. Even the slides are friendly... they are rollers instead of just a solid surface, so even without the ability to propel yourself you can slide right down. There are regular slides, too. Everything is sturdy enough for adults, too. I'm not a "little girl" and I was able to slide, run around and play just like Ryan. Well, something like that anyway... I lack his energy!
There are so many neat sensory things, like the water play area, that kids with or without a sensory "thing" can enjoy. All our kids thought the whole park was cool... but a close second to the trains was the water play area. I cannot begin to describe how cool it was. Just glance a little further north on the page and check out Ryan gettin' his stim on!
Then there are the rides. Oh, the sweet people who work there! The only place I've been where the help is such a part of the experience is Disney World. Not kidding. All the staff were welcoming and warm, some with a special need themselves in some way or another. On the train that goes around the park, we rode three times the first time, and two or three more at the end of the day. Again, the train is even wheelchair accesible. This doesn't apply to us, but there are so many who need it. On the carousel (again, wheelchair friendly) we rode twice around... only stopped at two because mommy doesn't do round and round. As we got off, one of the staff members needed to go inside the carousel to do something. Before I could grab him, Ryan followed him!!! The man left outside the carousel just laughed and said in a voice loud enough to hear, "You've got one behind you" like it happens all the time. No big deal. No "hey lady, control your kid." Just a little warning so he didn't back over my boy. After a high five from Ryan, we left the carousel and continued our stay.
I have to say, any time I encounter something done for special needs kids, or just autism, or it's just so obvious that people get it, I choke up. Random tears of relieved joy rolled down my face for at least the first hour I watched Ryan, Richie, and Maelynn run around and lead the way. Even ground. No "you and you, but not you". The biggest thing that got me... Morgan, who the park was inspired by... is pictured at the front of the park. Below her picture is all about her. Things she likes to do, eat, see, and what she enjoys, what kiind of person she is. Never once does it mention what her "special need" is. Never once are you confronted with a label. The only label that exists is simply "hi, I'm Crystal, and I like...."
For three glorious hours, I didn't have to say the word "autism". No explaining, no apologizing, and even during a meltdown (the only one at the park), no stares or comments. Just the five of us, playing and being together.
The boys were boys...
We began our journey to San Antonio for the Texas Bandmasters' Association convention, held every summer. For the past couple of years something has come up and we've been forced to stay home. This time, we were kinda determined to go. We learned of a place called Morgan's Wonderland and decided that our family would love that.
We were so right!
 |
| This is at the base of the statue (below). I immediately knew this was going to be a very good day. |
There are so many neat sensory things, like the water play area, that kids with or without a sensory "thing" can enjoy. All our kids thought the whole park was cool... but a close second to the trains was the water play area. I cannot begin to describe how cool it was. Just glance a little further north on the page and check out Ryan gettin' his stim on!
 |
| Goin' around again on the train! |
I have to say, any time I encounter something done for special needs kids, or just autism, or it's just so obvious that people get it, I choke up. Random tears of relieved joy rolled down my face for at least the first hour I watched Ryan, Richie, and Maelynn run around and lead the way. Even ground. No "you and you, but not you". The biggest thing that got me... Morgan, who the park was inspired by... is pictured at the front of the park. Below her picture is all about her. Things she likes to do, eat, see, and what she enjoys, what kiind of person she is. Never once does it mention what her "special need" is. Never once are you confronted with a label. The only label that exists is simply "hi, I'm Crystal, and I like...."
For three glorious hours, I didn't have to say the word "autism". No explaining, no apologizing, and even during a meltdown (the only one at the park), no stares or comments. Just the five of us, playing and being together.
The boys were boys...
Mae was Mae... ever the busy girl.
As we poured ourselves into the front seats of the van after cajoling, buckling, issuing water and snacks, diapey changes and explanations of what's next, we looked at each other and agreed we'll be back. Not sure when, but we'll be back. After all, how can you stay away from a place that lets kids, whose bodies have robbed them of so many of the joys of physical child's play, swing and slide? Other than our own experience, one that will stay in my heart is the image of a mother sliding with her teenage son. He needed her assistance, and she was more than elated to oblige. As they slid down the roller-slide, laughing and smiling with an unadulterated joy I cannot explain, I made up my mind that I had to do all I could to share this place. This fabulous, amazing, yet so simple... level ground. Absolutely heavenly.
Taking Flight(on the plaque below the statue)
"Taking Flight" dramatically symbolizes what Morgan's Wonderland stands for- to inspire those with special needs to soar beyond their physical or cognitive challenges and reach heights thought to be unattainable. Just as a butterfly magically emerges from its cocoon, unfurls its wings and takes flight, this unique park is dedicated to encouraging each individual to dare to reach beyond their limitations and reach the heights of their dreams.
We are so thankful to the founders, dreamers, for Morgan, for her wonderland. But we're even more thankful to be blessed with the three most amazing children I've ever met... Ryan, Richie, and Maelynn... and all their dreams, hopes, and challenges.
Thanks be to God, the giver of all!
Thursday, July 21, 2011
Question...
Ever have one of those days? One of those days where you feel like your limbs are moving through peanut butter? One of those times when the things you do manage to do seem to be amazingly messed up? The worst part is I have little excuse. Okay, I have a little excuse, but it's not anything huge.
On these days the funny thing is, I don't realize how different our lives really are. I get tired and start to beat up on myself a bit for the dishes in the sink, the cans of paint by the door, the border that needs to come down in the kitchen. Then I hear a random scream and realize, "oh yeah..." and it all comes together. Thankfully, I have a husband who is willing to learn this aspect of loving his wife. I won't lie. He does make mistakes. We both do. We are, at times, insensitive to each other, selfish, and just plain grumpy. But that's where grace and mercy come in, and oh do we ever need that.
Yesterday was a fun day, and looking back, it was rather busy. A friend needed an interview with a special needs mom, so I got to do that and really enjoyed it. For one, I got to spend time in my home with someone who gets it. That's always valuable. Equally valuable is long phone conversations with good friends just to catch up... friends who trust that you're doing the best you can with what you have... yeah, that's amazing too.
Anyway, the questions were interesting. The ones that stick out the most are something about how your child's special need has challenged your relationships (family, friends, marriage, etc.). Wow. Talk about shoving Niagara Falls through a drinking straw. As I struggled to answer without giving her writer's cramp (yes, she used this low-tech papery blog thing called a "notebook" and this magical stick called a "pen"), I knew that there was too much. Did my best, though. But not all of it would fit. It's too huge.
What has Autism done to challenge us?
Autism has made us more aware and thankful than we could ever have imagined for every milestone in all our kids. Once you've had a child who didn't reach them, they are celebrated with the fervor of, say, winning the "Piston Cup" or making it to "P Sherman 42 Wallaby Way Sydney". For those non-Pixar watchers, with winning the Stanley Cup or the Super Bowl. We get excited.
Autism has made us hurt more than we wanted to. The pain of realizing your child has challenges that you cannot immediately change... it's not a scrape on the knee, a cold, or a stomach bug that will pass. It's in your face and demanding all the time. It does not take time off because you've been doing so great. It alters your thinking about everything. It forces you to plan EVERYTHING down to the letter. A family trip to the mall? To church? To the park? Every last blasted step must be thought out. We are picture-scheduled and social-storied, this-then-that-ed to the nth degree. It stings you in places you didn't know anything could reach, and even in places you didn't know you had. There are days and times when it brings you to your knees in ways you never thought possible.
Autism magnifies the meanness and kindness of people. We have seen people go out of their way to connect with Ryan, and we see all the time people go out of their way to avoid him and us. The most glaring example is the difference between going out with just the two littles and with Ryan. Go out with just Mae and Richie, and you get "oh, are they twins?" and "oh, what beautiful children!" and "oh, you have your hands full". I usually add "you should see me when I have their six year old brother, too." Go out with Ryan? Few people look us in the eye. Fewer still speak. I've even heard comments like, when I told someone I was pregnant with Maelynn, "oh, I thought surely you'd had your tubes tied!" From afraid to speak to unwanted advice to angry comments at his behavior, there is a marked difference in how we're treated. Funny thing is, I feel guilty when it feels normal. Almost like I'm lying, you know?
Autism searches your marriage for weak spots and exploits them. If you're not good, effective communicators, if you haven't learned to forgive (and that forgiveness means you give up your right to punish the person who hurt you), if you're not playing as a team... all those things are magnified. They were problems before, but they'll really be problems now. Having children period does this, but having special needs children will go a few steps further. Our time together is sacred. Once the kids go to bed, once we have our chores done, we have big kid time. Ice cream and a non-animated show, video games, air hockey on the iPad, or a movie, something that is light and fun at least once a week if we can swing it. Kids are in bed, we know they're safe, and we chill and take time to be Eric and Crystal, those people who only dated a week and a half before they got engaged, and not Daddy and Mommy. But I'd lie if I said we never argue, never get mad and cranky and say things we wish we hadn't. Pressure is too much at times, and we're fallen humans.
Autism drives you to or from your faith. If you are angry at God for the special need your child has, tell Him. He can take it... He's GOD for cryin' out loud. He hears and knows your thoughts anyway, so you might as well spill it. Work through it. For me, there's no way to deal without knowing someone else is in charge. I still do my best, I still advocate for my son, but at the end of a day of screaming meltdowns and utter frustration, it's nice to know you can let go of the rope, because you know He's there to catch you. It's also nice to know there's a purpose and plan for this (Jeremiah 29:11). Obviously (I hope), autism has driven us to seek the Lord more fervently than ever.
Autism makes you let go of things that don't... and really never did... matter. My house is not uber-tidy. The floor of my van is covered in an odd assortment of old french fries, cracker crumbs, and cheerios, there are picture schedule icons everywhere, there are toys all over the place, but I do my best. The sheets are clean, the diapers are clean, the kids are fed. On the days when I can't even say that, oh well. See above. Today I needed to be painting, making a packing list, mopping, or doing any number of things, but I like to think that the time I spent in the floor with the "bears" (bear counters), books, and watching T-O-Y three (Ryan's name for Toy Story 3) are going to be more remembered by the kids. Yes, I do clean house, but neat freak? Oh no. And it's certainly not a showplace... but it is happy and comfortable.
Autism forces you to let go of some dreams you didn't even realize were dreams to make room for your child's safety and well-being. And yours. Situations you used to enjoy are just too frustrating. Small talk is almost unbearable (can't lie... I was never good at that anyway). Things you once took for granted are now in the "yeah right" dream category.
Autism makes you grateful for so many things you never thought about before. It makes you angry about things you never knew existed. It brings words like segregation, integration, inclusion, separation, isolation, and frustration to new levels of understanding. It makes you more sensitive and tougher at the same time. It brings to light so many ways people need to be loved, and the fact that almost none of them are exactly the same. It makes the everyday so flustering, but at the same time, on the rare occasions something goes completely smoothly, it's so much sweeter.
It has taught us that standing in the midst of a time when you have no idea what is going to happen next, where the patience for the rest of the fit will come from, or what in the world you're going to do... when you stand there, tears pouring, heart-sick, worn, weary, meltdown-weathered and exhausted and say with the shred of energy you have left that there is a reason... He is in charge, He has not left us, His mercies are new every morning, and we will rise to greet tomorrow with joy, for it is a day He has made... when you reach through the pain and extend a hand and heart to others in the same situation... when we just get up and do it all again and again... that is worship. We want to live it, not just survive it.
We are there right now. A major time of transition. No idea how it will go. We have a pretty good idea of how to prepare, and that consists of making sure the picture schedule has been in play, he's used to getting up at the hour he needs to go to school, we've worked on sight words, counting, sorting, waiting, sharing, asking for what we want, going to the bathroom without following a timer, everything we can think of, and now we have to stay the course, and trust. There are moments when I think he's gonna blow the top off of all the changes, and there are moments I think we've lost our minds. One minute he's counting, reading out loud, and hugging his brother and the next minute, he's screaming, hitting himself, and shoving his sister off the couch. Just when we think something's gonna go one way it goes flyin' the other.
So how has Autism challenged our family? How has it changed us?
I hate to admit it, but when all's said and done, we're closer to each other and closer to God. We've been forced to sort through the chaff, cut through the fluff, and get to the heart of it. All of it. So as much as I hate that anyone deals with any of the ASD spectrum, and as much as I want to see all the problems of all these families go away, at the end of the day I have to say that in the same way boot camp makes a soldier, the autism battle makes we warrior mamas and daddies and brothers and sisters of autism tougher, leaner, and better. A little more edgy? Yes. More stressed? Certainly. But less likely to assume. More likely to be truly thankful than we were before. In the end are we thankful for autism? NO. We are thankful for Ryan, we are thankful for what we have learned, for each other, and for the God who gives us every good thing.
How has autism challenged us, you ask?
It's challenged us to live.
Thanks be to God!!!
On these days the funny thing is, I don't realize how different our lives really are. I get tired and start to beat up on myself a bit for the dishes in the sink, the cans of paint by the door, the border that needs to come down in the kitchen. Then I hear a random scream and realize, "oh yeah..." and it all comes together. Thankfully, I have a husband who is willing to learn this aspect of loving his wife. I won't lie. He does make mistakes. We both do. We are, at times, insensitive to each other, selfish, and just plain grumpy. But that's where grace and mercy come in, and oh do we ever need that.
Yesterday was a fun day, and looking back, it was rather busy. A friend needed an interview with a special needs mom, so I got to do that and really enjoyed it. For one, I got to spend time in my home with someone who gets it. That's always valuable. Equally valuable is long phone conversations with good friends just to catch up... friends who trust that you're doing the best you can with what you have... yeah, that's amazing too.
Anyway, the questions were interesting. The ones that stick out the most are something about how your child's special need has challenged your relationships (family, friends, marriage, etc.). Wow. Talk about shoving Niagara Falls through a drinking straw. As I struggled to answer without giving her writer's cramp (yes, she used this low-tech papery blog thing called a "notebook" and this magical stick called a "pen"), I knew that there was too much. Did my best, though. But not all of it would fit. It's too huge.
What has Autism done to challenge us?
Autism has made us more aware and thankful than we could ever have imagined for every milestone in all our kids. Once you've had a child who didn't reach them, they are celebrated with the fervor of, say, winning the "Piston Cup" or making it to "P Sherman 42 Wallaby Way Sydney". For those non-Pixar watchers, with winning the Stanley Cup or the Super Bowl. We get excited.
Autism has made us hurt more than we wanted to. The pain of realizing your child has challenges that you cannot immediately change... it's not a scrape on the knee, a cold, or a stomach bug that will pass. It's in your face and demanding all the time. It does not take time off because you've been doing so great. It alters your thinking about everything. It forces you to plan EVERYTHING down to the letter. A family trip to the mall? To church? To the park? Every last blasted step must be thought out. We are picture-scheduled and social-storied, this-then-that-ed to the nth degree. It stings you in places you didn't know anything could reach, and even in places you didn't know you had. There are days and times when it brings you to your knees in ways you never thought possible.
Autism magnifies the meanness and kindness of people. We have seen people go out of their way to connect with Ryan, and we see all the time people go out of their way to avoid him and us. The most glaring example is the difference between going out with just the two littles and with Ryan. Go out with just Mae and Richie, and you get "oh, are they twins?" and "oh, what beautiful children!" and "oh, you have your hands full". I usually add "you should see me when I have their six year old brother, too." Go out with Ryan? Few people look us in the eye. Fewer still speak. I've even heard comments like, when I told someone I was pregnant with Maelynn, "oh, I thought surely you'd had your tubes tied!" From afraid to speak to unwanted advice to angry comments at his behavior, there is a marked difference in how we're treated. Funny thing is, I feel guilty when it feels normal. Almost like I'm lying, you know?
Autism searches your marriage for weak spots and exploits them. If you're not good, effective communicators, if you haven't learned to forgive (and that forgiveness means you give up your right to punish the person who hurt you), if you're not playing as a team... all those things are magnified. They were problems before, but they'll really be problems now. Having children period does this, but having special needs children will go a few steps further. Our time together is sacred. Once the kids go to bed, once we have our chores done, we have big kid time. Ice cream and a non-animated show, video games, air hockey on the iPad, or a movie, something that is light and fun at least once a week if we can swing it. Kids are in bed, we know they're safe, and we chill and take time to be Eric and Crystal, those people who only dated a week and a half before they got engaged, and not Daddy and Mommy. But I'd lie if I said we never argue, never get mad and cranky and say things we wish we hadn't. Pressure is too much at times, and we're fallen humans.
Autism drives you to or from your faith. If you are angry at God for the special need your child has, tell Him. He can take it... He's GOD for cryin' out loud. He hears and knows your thoughts anyway, so you might as well spill it. Work through it. For me, there's no way to deal without knowing someone else is in charge. I still do my best, I still advocate for my son, but at the end of a day of screaming meltdowns and utter frustration, it's nice to know you can let go of the rope, because you know He's there to catch you. It's also nice to know there's a purpose and plan for this (Jeremiah 29:11). Obviously (I hope), autism has driven us to seek the Lord more fervently than ever.
Autism makes you let go of things that don't... and really never did... matter. My house is not uber-tidy. The floor of my van is covered in an odd assortment of old french fries, cracker crumbs, and cheerios, there are picture schedule icons everywhere, there are toys all over the place, but I do my best. The sheets are clean, the diapers are clean, the kids are fed. On the days when I can't even say that, oh well. See above. Today I needed to be painting, making a packing list, mopping, or doing any number of things, but I like to think that the time I spent in the floor with the "bears" (bear counters), books, and watching T-O-Y three (Ryan's name for Toy Story 3) are going to be more remembered by the kids. Yes, I do clean house, but neat freak? Oh no. And it's certainly not a showplace... but it is happy and comfortable.
Autism forces you to let go of some dreams you didn't even realize were dreams to make room for your child's safety and well-being. And yours. Situations you used to enjoy are just too frustrating. Small talk is almost unbearable (can't lie... I was never good at that anyway). Things you once took for granted are now in the "yeah right" dream category.
Autism makes you grateful for so many things you never thought about before. It makes you angry about things you never knew existed. It brings words like segregation, integration, inclusion, separation, isolation, and frustration to new levels of understanding. It makes you more sensitive and tougher at the same time. It brings to light so many ways people need to be loved, and the fact that almost none of them are exactly the same. It makes the everyday so flustering, but at the same time, on the rare occasions something goes completely smoothly, it's so much sweeter.
It has taught us that standing in the midst of a time when you have no idea what is going to happen next, where the patience for the rest of the fit will come from, or what in the world you're going to do... when you stand there, tears pouring, heart-sick, worn, weary, meltdown-weathered and exhausted and say with the shred of energy you have left that there is a reason... He is in charge, He has not left us, His mercies are new every morning, and we will rise to greet tomorrow with joy, for it is a day He has made... when you reach through the pain and extend a hand and heart to others in the same situation... when we just get up and do it all again and again... that is worship. We want to live it, not just survive it.
We are there right now. A major time of transition. No idea how it will go. We have a pretty good idea of how to prepare, and that consists of making sure the picture schedule has been in play, he's used to getting up at the hour he needs to go to school, we've worked on sight words, counting, sorting, waiting, sharing, asking for what we want, going to the bathroom without following a timer, everything we can think of, and now we have to stay the course, and trust. There are moments when I think he's gonna blow the top off of all the changes, and there are moments I think we've lost our minds. One minute he's counting, reading out loud, and hugging his brother and the next minute, he's screaming, hitting himself, and shoving his sister off the couch. Just when we think something's gonna go one way it goes flyin' the other.
So how has Autism challenged our family? How has it changed us?
I hate to admit it, but when all's said and done, we're closer to each other and closer to God. We've been forced to sort through the chaff, cut through the fluff, and get to the heart of it. All of it. So as much as I hate that anyone deals with any of the ASD spectrum, and as much as I want to see all the problems of all these families go away, at the end of the day I have to say that in the same way boot camp makes a soldier, the autism battle makes we warrior mamas and daddies and brothers and sisters of autism tougher, leaner, and better. A little more edgy? Yes. More stressed? Certainly. But less likely to assume. More likely to be truly thankful than we were before. In the end are we thankful for autism? NO. We are thankful for Ryan, we are thankful for what we have learned, for each other, and for the God who gives us every good thing.
How has autism challenged us, you ask?
It's challenged us to live.
Thanks be to God!!!
Tuesday, June 7, 2011
Tales of Day Camp 2
This morning was much better than yesterday. Smooth everything. Ryan was easy, Richie was easy, and pretty, pretty princess Maelynn slept in her own bed... all night long. The drive went quickly, and once we arrived there was plenty of time to get the kids out, Mae strollered, and even enough time to say hi to a new ASD friend. "He's really into outer space right now, "said Mom, then she went into this awesome thing about how he likes to pretend he's this man from another planet. Complete with names and everything. Completely awesome!
We got to the camp check-in point, and found K. Ryan was happy to see them and scoot off, doing his thing. Eric and I and the littles went and looked at the bears, who were smart to still be in their "rooms" in the habitat sleeping. So we made a trip to the bookstore, relatively nearby. Eric had a plan to get the boys a new book we saw in a previous trip, and Richie quickly attached to a BU, green and gold, squishy football. After talking him into a cheaper *I mean* smaller basketball, and after some fun browsing we made our way around campus for a while. Good thing I brought a couple of puzzles, because three hours waiting on a college campus in the heat can get a little old with two squirmy little ones. We accidentally ran into Ryan once, but we managed to worm away with no upset on his part. Richie, however, was devastated, like we'd separated them forever. Bit of puzzle working and some apple juice and he was himself again.
Went to pick up Ryan, and he'd found the elevator. Ugh.
Keep in mind that these are kids (masters' level students) who have studied autism, and they're getting practice in dealing with this. Usually I'd be all "GAAAAH you let him play with WHAT?!" But honestly, I believe they were doing what they said, which was trying to figure out a way to transition him smoothly. This is cool... well, I think it is... that Ryan is involved in someone's learning process.
The rest of the afternoon following this, however, not so much.
We promised Ryan that he would have "the restaurant" for lunch on Tuesday and Thursday. We have fabulous band boosters here, and they gave us a gift card to "the restaurant" that will allow us, if we're careful, to take Ryan to his favorite restaurant twice this week. Honestly, if you work at it and don't mind sharing, you can eat well at "the restaurant" (aka On the Border) for cheaper than that place with the creepy clown. They are also awesome (the one in Waco, anyway) about seating us somewhere comfortable for Ryan. But we almost didn't make it.
On the way to the restaurant, Ryan started to scream "cheesy chippies!" in meltdown-form, complete with the chimplike beat-your-head-with-flailing-arms thing. After pulling over in a random store parking lot and talking about how we have to give mommy a chance to drive there, we managed to make it to his beloved "the restaurant". He did great during lunch, chowed like a big dog on his cheesy chippies, and we all had a great time. In the two errands after that, however...
First was Mardel. Love that place. I needed to pick up a timer, laminate Ryan's ipad puzzle (for losing/gaining minutes on ipad... stay tuned), and just generally wanted to look for a few things. All for Ryan. We'd use them for Richie and Mae eventually too... but for now, it's all about getting more tools in Ryan's belt. At the front of the store, they have this cool display of Veggietales stuff, complete with the videos playing all the time, and chairs to watch from. They also have a train table.
How DARE they.
I know, most kids, blah blah blah. But for us, it's awful. We decided to try to bolt to the back, get done, and leave. Man, do I ever wish the Force was real. "This is not the train table you saw. Keep moving to the back of the store." So Ryan thrashed. And screamed. And even brought out the yelp. I can't describe it, can't describe the looks and how it feels to have people avoid you, not just your kid... like maybe your horrible parenting skills will jump onto them if they get too close. I'm sure it makes them uncomfortable to see him act that way, and I am sorry. I really am. But not more sorry than I am that Ryan is so upset.
Fast-forward (for you young kids, that was what you did with cassettes... you had to wind the tape forward, and it was fast... nevermind) to Target. This wasn't simply selfish, but it was a little indulgent. We needed more cloth diaper inserts, more wipes, and mommy could really use a new swimsuit. The one I bought for our honeymoon is getting kinda see-thru... and no matter how much weight I lose, that's still yucky! Thinking we could help our little guy, give him something to make the trip more fun, we grabbed a bag of popcorn on the way in. After refusing multiple times to share with his brother, Ryan lost the popcorn. When he calmed down, he could have it back. But for now, no popcorn.
Can't tell you how many times I said that. No popcorn while you're screaming and beating your head. No popcorn while you're squealing like an angry pig. Calm down. You're ok. I tried everything I could think of, stayed calm, and tried to remember what I was looking for. By the time I was halfway through our list, Ryan had started to hit his brother. I heard Richie cry and asked him what happened... and hearing him say "Yyan hit Wichie onna ahm" I almost cried. I hugged Richie and asked if he wanted to move, but he wanted to stay with brother, who was still screaming. Then a few seconds later,
"Mommy?"
"What is it, sweetie?"
"Wichie wants Yyan ta havva poptorn."
Ever cried in Target?
So I got the popcorn, and explaining as best I could to Ryan that his brother, whom he had just hit, screamed at, and hurt, wanted him to have it. Grace and mercy from a three year old.
I may not get to shop for clothes, I may wear the same clothes I have for years. I may only go on a date with my husband by ourselves when the grandparents can watch the kids, we may never take a trip as a couple, our house may always have little signs with velcro strips plastered to the walls. We may be sick of feeling like we're being tolerated, sick of ignorance, judgement, and not being able to fix it. We may be on the edge all the time, feeling like we constantly must be on our toes, frustrated by schedules, limited by timers, money, and humanness...
but oh my WORD how fabulous it is to see our barely three-year-old teach his brother- no, his mother and father- about grace and mercy.
I can guarantee you that I wouldn't trade my life for anyone else's. Not Eric, not Ryan, not Richie, not Maelynn. After eight years of being Mrs. Senzig, I wouldn't have made that decision any other way. Eight years plus nine or so months of laughter, challenges, tears, rejoicing, and heartache as we take what life throws our way... after eight years I can tell you that we're better than we were at being married on June 7, 2003, but we have a lot to learn. Amazing, that committment... that covenant with God and each other to love each other through it all. To cling to the Lord and one another while forgiving, extending mercy and grace, and learning to see God's hand in it all. We've had some amazing times, Eric Senzig. I stand in awe at the relationship God gave us within a week and a half of our first date. I can honestly say I am more in love with you now than I was in 2003 (which I did not think possible), and I will be more in love with you tomorrow.
Happy 8th Anniversary, honey. I love you... and I promise to work every day to better 1 Corinthians 13 love you.
We got to the camp check-in point, and found K. Ryan was happy to see them and scoot off, doing his thing. Eric and I and the littles went and looked at the bears, who were smart to still be in their "rooms" in the habitat sleeping. So we made a trip to the bookstore, relatively nearby. Eric had a plan to get the boys a new book we saw in a previous trip, and Richie quickly attached to a BU, green and gold, squishy football. After talking him into a cheaper *I mean* smaller basketball, and after some fun browsing we made our way around campus for a while. Good thing I brought a couple of puzzles, because three hours waiting on a college campus in the heat can get a little old with two squirmy little ones. We accidentally ran into Ryan once, but we managed to worm away with no upset on his part. Richie, however, was devastated, like we'd separated them forever. Bit of puzzle working and some apple juice and he was himself again.
Went to pick up Ryan, and he'd found the elevator. Ugh.
Keep in mind that these are kids (masters' level students) who have studied autism, and they're getting practice in dealing with this. Usually I'd be all "GAAAAH you let him play with WHAT?!" But honestly, I believe they were doing what they said, which was trying to figure out a way to transition him smoothly. This is cool... well, I think it is... that Ryan is involved in someone's learning process.
The rest of the afternoon following this, however, not so much.
We promised Ryan that he would have "the restaurant" for lunch on Tuesday and Thursday. We have fabulous band boosters here, and they gave us a gift card to "the restaurant" that will allow us, if we're careful, to take Ryan to his favorite restaurant twice this week. Honestly, if you work at it and don't mind sharing, you can eat well at "the restaurant" (aka On the Border) for cheaper than that place with the creepy clown. They are also awesome (the one in Waco, anyway) about seating us somewhere comfortable for Ryan. But we almost didn't make it.
On the way to the restaurant, Ryan started to scream "cheesy chippies!" in meltdown-form, complete with the chimplike beat-your-head-with-flailing-arms thing. After pulling over in a random store parking lot and talking about how we have to give mommy a chance to drive there, we managed to make it to his beloved "the restaurant". He did great during lunch, chowed like a big dog on his cheesy chippies, and we all had a great time. In the two errands after that, however...
First was Mardel. Love that place. I needed to pick up a timer, laminate Ryan's ipad puzzle (for losing/gaining minutes on ipad... stay tuned), and just generally wanted to look for a few things. All for Ryan. We'd use them for Richie and Mae eventually too... but for now, it's all about getting more tools in Ryan's belt. At the front of the store, they have this cool display of Veggietales stuff, complete with the videos playing all the time, and chairs to watch from. They also have a train table.
How DARE they.
I know, most kids, blah blah blah. But for us, it's awful. We decided to try to bolt to the back, get done, and leave. Man, do I ever wish the Force was real. "This is not the train table you saw. Keep moving to the back of the store." So Ryan thrashed. And screamed. And even brought out the yelp. I can't describe it, can't describe the looks and how it feels to have people avoid you, not just your kid... like maybe your horrible parenting skills will jump onto them if they get too close. I'm sure it makes them uncomfortable to see him act that way, and I am sorry. I really am. But not more sorry than I am that Ryan is so upset.
Fast-forward (for you young kids, that was what you did with cassettes... you had to wind the tape forward, and it was fast... nevermind) to Target. This wasn't simply selfish, but it was a little indulgent. We needed more cloth diaper inserts, more wipes, and mommy could really use a new swimsuit. The one I bought for our honeymoon is getting kinda see-thru... and no matter how much weight I lose, that's still yucky! Thinking we could help our little guy, give him something to make the trip more fun, we grabbed a bag of popcorn on the way in. After refusing multiple times to share with his brother, Ryan lost the popcorn. When he calmed down, he could have it back. But for now, no popcorn.
Can't tell you how many times I said that. No popcorn while you're screaming and beating your head. No popcorn while you're squealing like an angry pig. Calm down. You're ok. I tried everything I could think of, stayed calm, and tried to remember what I was looking for. By the time I was halfway through our list, Ryan had started to hit his brother. I heard Richie cry and asked him what happened... and hearing him say "Yyan hit Wichie onna ahm" I almost cried. I hugged Richie and asked if he wanted to move, but he wanted to stay with brother, who was still screaming. Then a few seconds later,
"Mommy?"
"What is it, sweetie?"
"Wichie wants Yyan ta havva poptorn."
Ever cried in Target?
So I got the popcorn, and explaining as best I could to Ryan that his brother, whom he had just hit, screamed at, and hurt, wanted him to have it. Grace and mercy from a three year old.
I may not get to shop for clothes, I may wear the same clothes I have for years. I may only go on a date with my husband by ourselves when the grandparents can watch the kids, we may never take a trip as a couple, our house may always have little signs with velcro strips plastered to the walls. We may be sick of feeling like we're being tolerated, sick of ignorance, judgement, and not being able to fix it. We may be on the edge all the time, feeling like we constantly must be on our toes, frustrated by schedules, limited by timers, money, and humanness...
but oh my WORD how fabulous it is to see our barely three-year-old teach his brother- no, his mother and father- about grace and mercy.
I can guarantee you that I wouldn't trade my life for anyone else's. Not Eric, not Ryan, not Richie, not Maelynn. After eight years of being Mrs. Senzig, I wouldn't have made that decision any other way. Eight years plus nine or so months of laughter, challenges, tears, rejoicing, and heartache as we take what life throws our way... after eight years I can tell you that we're better than we were at being married on June 7, 2003, but we have a lot to learn. Amazing, that committment... that covenant with God and each other to love each other through it all. To cling to the Lord and one another while forgiving, extending mercy and grace, and learning to see God's hand in it all. We've had some amazing times, Eric Senzig. I stand in awe at the relationship God gave us within a week and a half of our first date. I can honestly say I am more in love with you now than I was in 2003 (which I did not think possible), and I will be more in love with you tomorrow.
Happy 8th Anniversary, honey. I love you... and I promise to work every day to better 1 Corinthians 13 love you.
If I speak in the tongues of men and of angels, but have not love, I am a noisy gong or a clanging cymbal. And if I have prophetic powers, and understand all mysteries and all knowledge, and if I have all faith, so as to remove mountains, but have not love, I am nothing. If I give away all I have, and if I deliver up my body to be burned, but have not love, I gain nothing.
Love is patient and kind; love does not envy or boast; it is not arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it does not rejoice at wrongdoing, but rejoices with the truth. Love bears all things, believes all things, hopes all things, endures all things.
Love never ends. As for prophecies, they will pass away; as for tongues, they will cease; as for knowledge, it will pass away. For we know in part and we prophesy in part, but when the perfect comes, the partial will pass away. When I was a child, I spoke like a child, I thought like a child, I reasoned like a child. When I became a man, I gave up childish ways. For now we see in a mirror dimly, but then face to face. Now I know in part; then I shall know fully, even as I have been fully known.
So now faith, hope, and love abide, these three; but the greatest of these is love.
1 Corinthians 13, ESV
Thursday, May 19, 2011
Poor Elmo...
Courage does not always roar. Sometimes it is a quiet voice at the end of the day, saying, I will try again tomorrow. ~ Mary Anne Radmacher
I needed this.
Lately, as you know, things have been changing in our lives. With Ryan getting bigger and older, things must change. Things we've clung to even without realizing it. There are things that, although we're typically-abled grownups, it's like pulling teeth to change for Eric and I. Some things have changed, too, and not for the better. Here's where I have a confession.
I'm having difficulties with potty training.
No, not me... I've been good since before I was two. No thanks to anyone but my Granny (Nanny's mother, my great-grandmother), who had a fabulous knack for that and a lot of things. I think she potty trained everyone from Nanny to me, and probably some neighborhood kids in there too! This difficulty is one of the things people don't always realize is on the ASD menu. Funny thing about that menu... great selection, but you don't make the choices. It's a ginormous grab-bag of traits, problems, difficulties and gifts. Not everyone even gets the same number of them.
One of our menu items is the potty mess. I must say that we don't have it NEARLY to the degree that a lot of people do. Ryan usually does very well in routine. We had been doing so very well for a long time, and just in the last few weeks we've seen a bit of regression. This is one of the things about autism that I have the hardest time dealing with. We think he stims on the feeling of it... I must emphasize "think". No idea if that's really what the deal is. He has a tendency to use this as something to exert control over when things are changing, it seems. And oh, are we ever tired of it! Did I mention that I have a nearly 3 year old and a 15 month old, too?! Maybe that's why I'm not scared of cloth diapers. I've cleaned so many diaper-used pairs of underoos and pants I'm nearing pro-level on getting smells out of stuff. Yeah, cloth diapers are totally not a problem... and they save us enough money to make sure Ryan gets to therapy and back, and we still get to eat.
With two in diapers and one prone to accidents at times, you'd think I'd be the first in line to start potty training Richie. In reality, the thought makes me tired. The cutesie training pants ads, the neat little videos and stuff... part of me wants to think it's cute and cool and try to get into it, and the other part of me wants to throw myself on the bed and cry. We have been working on this since right before we left Fairfield. That would be about three years. Three years of poopy pull-ups, underwear, pants, bribes, even pleading with Ryan to not poop on Elmo's face, conveniently located on the little booty of his underwear. Nothing doing. Oh yes, he was doing famously for as long as we stayed in routine for a long time, but I think... no, I know... Ryan knows there's something afoot. He can feel the changes if nothing else.
We really don't know why. We really don't know if it's something he chooses or if he just doesn't get it, or if there's something about it that he kinda stims on, in an odd way. It is, however, one of the biggest kicks in the gut of the whole autism thing. It's this kind of thing that makes us panic. In that one instant, that one flash of light, you see his whole life flash before you. It's in that instant that it's tempting to try to wrest control.
But the more I try to control, the more I get angry when I realize there's no hope of control. So I have to practice the heart-change of wanting to instead understand, meet Ryan where he is, and try to go from there. I have to be okay with the prospect of potty training being an ongoing thing for a long, long time.
I also have to be okay with... even find joy with... the fact that there are so many things that I have to face by myself. When I say "by myself" or "alone", I mean time with no other adults with skin on in the house. No one to say, "you go sit down, I'll take this one". No one to play with the littles... or at least keep them out of trouble... while I go through the whole "where do we put our poop, Ryan?" think for the bajillionth time. Yes, my Eric and I are here together, but there are times when he is not (although Jesus always is... and without that, oh my...).
Tonight I was listening to my husband read "Oh, The Places You'll Go" by Dr. Seuss to the boys before bed, and these words floated over the laptop screen and into my ears,
All Alone!
Whether you like it or not,
Alone will be something you'll be quite a lot.
And when you're there, there's a very good chance
you'll meet things that scare you right out of your pants.
There are some, down the road between hither and yon,
that scare you so much you won't want to go on.
Yep, there are days that I'm scared so much I'm not sure I can go on. That something has to give. Something simply must change or improve, even if that something is me. There are moments like this, for sure. And in these moments, these days of dread and not being sure what to do next, there is always something. Something like this poetic little book, a song, or a verse that helps me just go ahead and cry. Get it out there, admit that I'm not able, without His help, to keep pedaling. Sometimes it's something cool, like Ryan at bedtime last night, wriggling his arm out of the covers of the top bunk and pulling my arm over so that he could lay his head on it, then whispering in his sweet, robotic way, "I love you mommy." Or maybe it's Richie shoving one of his stuffed animals at me, insisting that I sleep with it tonight. Other times the something comes in the form of encouragement from someone, or from my bible study time. But it is always there, just when I need it.
This morning, my bible study happened to be in Joshua, right at the time when it's time for the now-nation of Israel to cross the Jordan river on their way to Jericho. God told Joshua to tell the priests who bore the ark of the covenant, "When you come to the brink of the waters of the Jordan, you shall stand still in the Jordan." I grew up in eastern Oklahoma, and one of my favorite memories of childhood is swimming and fishing in the rivers. I cannot imagine someone telling me to just climb in and stand still. It'll stand still with you, I promise. Oh, I can imagine them telling me that all right. I can also imagine laughing in their faces!
But they did, and God held the waters back for the whole nation of Israel to pass through.
Sometimes, being "strong and courageous" as Joshua was commanded so very many times has very little to do with action. Sometimes standing still and being obedient in being still is the best thing we can do. Clinging tight to what we know to be true, even when it may not look like even we thought it should look, and carrying on in His name and for His sake in the face of the unknown is the not so popular side of courage. Believing hard on the hope we profess in Christ is at its most powerful when the world knows they don't want to play the hand you've been dealt. When it's three o'clock in the morning and you've been up and down over and over with the sick one, or the one who can't sleep (never will I forget that many ASD kids can't... mine can and I am forever grateful), or you're heating up that same pizza, cleaning up that same mess, scrubbing out that same underwear, watching that same video, remember that although no one with skin on sees, they also cannot do what you do the way you do it. No one can. No one can be Mama but Mama.
Because on some level, they know. They know and their siblings know. They know you have seen them at their absolute worst, and they see the grace, mercy, and love, and the faithfullness that your actions show. And since they see these things, it makes it so much more powerful when they hear you whisper, every night, with a hug and a prayer...
God has big plans for you, baby. God's gonna use you, and I can't wait to watch.
Because He does, and He is. And I can't wait to watch. So I will try again tomorrow.
I needed this.
Lately, as you know, things have been changing in our lives. With Ryan getting bigger and older, things must change. Things we've clung to even without realizing it. There are things that, although we're typically-abled grownups, it's like pulling teeth to change for Eric and I. Some things have changed, too, and not for the better. Here's where I have a confession.
I'm having difficulties with potty training.
No, not me... I've been good since before I was two. No thanks to anyone but my Granny (Nanny's mother, my great-grandmother), who had a fabulous knack for that and a lot of things. I think she potty trained everyone from Nanny to me, and probably some neighborhood kids in there too! This difficulty is one of the things people don't always realize is on the ASD menu. Funny thing about that menu... great selection, but you don't make the choices. It's a ginormous grab-bag of traits, problems, difficulties and gifts. Not everyone even gets the same number of them.
One of our menu items is the potty mess. I must say that we don't have it NEARLY to the degree that a lot of people do. Ryan usually does very well in routine. We had been doing so very well for a long time, and just in the last few weeks we've seen a bit of regression. This is one of the things about autism that I have the hardest time dealing with. We think he stims on the feeling of it... I must emphasize "think". No idea if that's really what the deal is. He has a tendency to use this as something to exert control over when things are changing, it seems. And oh, are we ever tired of it! Did I mention that I have a nearly 3 year old and a 15 month old, too?! Maybe that's why I'm not scared of cloth diapers. I've cleaned so many diaper-used pairs of underoos and pants I'm nearing pro-level on getting smells out of stuff. Yeah, cloth diapers are totally not a problem... and they save us enough money to make sure Ryan gets to therapy and back, and we still get to eat.
With two in diapers and one prone to accidents at times, you'd think I'd be the first in line to start potty training Richie. In reality, the thought makes me tired. The cutesie training pants ads, the neat little videos and stuff... part of me wants to think it's cute and cool and try to get into it, and the other part of me wants to throw myself on the bed and cry. We have been working on this since right before we left Fairfield. That would be about three years. Three years of poopy pull-ups, underwear, pants, bribes, even pleading with Ryan to not poop on Elmo's face, conveniently located on the little booty of his underwear. Nothing doing. Oh yes, he was doing famously for as long as we stayed in routine for a long time, but I think... no, I know... Ryan knows there's something afoot. He can feel the changes if nothing else.
We really don't know why. We really don't know if it's something he chooses or if he just doesn't get it, or if there's something about it that he kinda stims on, in an odd way. It is, however, one of the biggest kicks in the gut of the whole autism thing. It's this kind of thing that makes us panic. In that one instant, that one flash of light, you see his whole life flash before you. It's in that instant that it's tempting to try to wrest control.
But the more I try to control, the more I get angry when I realize there's no hope of control. So I have to practice the heart-change of wanting to instead understand, meet Ryan where he is, and try to go from there. I have to be okay with the prospect of potty training being an ongoing thing for a long, long time.
I also have to be okay with... even find joy with... the fact that there are so many things that I have to face by myself. When I say "by myself" or "alone", I mean time with no other adults with skin on in the house. No one to say, "you go sit down, I'll take this one". No one to play with the littles... or at least keep them out of trouble... while I go through the whole "where do we put our poop, Ryan?" think for the bajillionth time. Yes, my Eric and I are here together, but there are times when he is not (although Jesus always is... and without that, oh my...).
Tonight I was listening to my husband read "Oh, The Places You'll Go" by Dr. Seuss to the boys before bed, and these words floated over the laptop screen and into my ears,
All Alone!
Whether you like it or not,
Alone will be something you'll be quite a lot.
And when you're there, there's a very good chance
you'll meet things that scare you right out of your pants.
There are some, down the road between hither and yon,
that scare you so much you won't want to go on.
Yep, there are days that I'm scared so much I'm not sure I can go on. That something has to give. Something simply must change or improve, even if that something is me. There are moments like this, for sure. And in these moments, these days of dread and not being sure what to do next, there is always something. Something like this poetic little book, a song, or a verse that helps me just go ahead and cry. Get it out there, admit that I'm not able, without His help, to keep pedaling. Sometimes it's something cool, like Ryan at bedtime last night, wriggling his arm out of the covers of the top bunk and pulling my arm over so that he could lay his head on it, then whispering in his sweet, robotic way, "I love you mommy." Or maybe it's Richie shoving one of his stuffed animals at me, insisting that I sleep with it tonight. Other times the something comes in the form of encouragement from someone, or from my bible study time. But it is always there, just when I need it.
This morning, my bible study happened to be in Joshua, right at the time when it's time for the now-nation of Israel to cross the Jordan river on their way to Jericho. God told Joshua to tell the priests who bore the ark of the covenant, "When you come to the brink of the waters of the Jordan, you shall stand still in the Jordan." I grew up in eastern Oklahoma, and one of my favorite memories of childhood is swimming and fishing in the rivers. I cannot imagine someone telling me to just climb in and stand still. It'll stand still with you, I promise. Oh, I can imagine them telling me that all right. I can also imagine laughing in their faces!
But they did, and God held the waters back for the whole nation of Israel to pass through.
Sometimes, being "strong and courageous" as Joshua was commanded so very many times has very little to do with action. Sometimes standing still and being obedient in being still is the best thing we can do. Clinging tight to what we know to be true, even when it may not look like even we thought it should look, and carrying on in His name and for His sake in the face of the unknown is the not so popular side of courage. Believing hard on the hope we profess in Christ is at its most powerful when the world knows they don't want to play the hand you've been dealt. When it's three o'clock in the morning and you've been up and down over and over with the sick one, or the one who can't sleep (never will I forget that many ASD kids can't... mine can and I am forever grateful), or you're heating up that same pizza, cleaning up that same mess, scrubbing out that same underwear, watching that same video, remember that although no one with skin on sees, they also cannot do what you do the way you do it. No one can. No one can be Mama but Mama.
Because on some level, they know. They know and their siblings know. They know you have seen them at their absolute worst, and they see the grace, mercy, and love, and the faithfullness that your actions show. And since they see these things, it makes it so much more powerful when they hear you whisper, every night, with a hug and a prayer...
God has big plans for you, baby. God's gonna use you, and I can't wait to watch.
Because He does, and He is. And I can't wait to watch. So I will try again tomorrow.
Tuesday, May 17, 2011
We have new peepers!
I am so stinkin' proud of my son... and I am so grateful to be a beneficiary of God's providence!
Yes, I know you knew that. But today, in a time when I've had to hang on so tight to the hope we profess just to keep a smile on my face, I have had a heaping pile of wonderful dropped from heaven.
Ryan had the best day at school... maybe the best day ever.
Okay, I have to back up a bit. If you don't know about our history with Ryan and pediatric glaucoma, you should go here and read Ryan's Story.
Well, didja?
Okay good. I knew you would! Y'all are so good to me.
So you can see that Ryan is not new to the world of vision trouble. When he was just 9 months old he had glasses for a while, but at some point after he was about 18 months old or so, he quit leaving them on. After that, they were never quite sure if he really needed them or not, and being the family living on *a* teacher's salary, we chose to wait. They had been doing exams under anesthesia, and after the last time about two years ago when he came out of anesthesia kicking and screaming, I got a little spooked. This was also the time we were beginning to talk about autism, and I just wasn't comfortable with Ryan going under general anesthesia to have his eyes checked. They always came back saying they were sure the glaucoma was well under control. So with the doctor's blessing, we waited a while.
Yesterday was Ryan's first appointment in 2 years. These appointments are not just going down the street to the doctor's office. These involve a trip to Dallas, sometimes in the middle of the week. We live about an hour and forty-five minutes from the big D, and if we can get an appointment on a Monday or Friday, we can stay in Richardson (ANY excuse to go see Grammy and Grampy). Otherwise it's to Children's in Dallas and back... with three kids.
Sounds tempting, no?
Now, if you don't know Ryan or you don't have an ASD child, you may be thinking "Trip to the opthalmologist? It's not like the dentist, for goodness sake! What's the big deal?" The big deal is that Ryan doesn't process verbal instruction just real well. Add to that a new environment, lack of communication skill other than screaming and kicking, and here we go! All you ASD parents know where I am with this. You might as well be pulling teeth without anesthesia. The assisting resident came in, a pretty twentysomething with brown hair and a precious smile. Ryan walked right up to her and pointed, saying "it's a woman!" Thankfully, she thought it was cute. After she thanked him for not thinking she was a man, we had to let the sweet resident shine a couple of lights at him... still not sure what she was doing, but Ryan wasn't impressed. Then came the fun part.
Ever had your pressures checked? Ever had your eyes dilated?
Yep, had to do both while the nurse and I held Ryan while she did both. I tried to tell Ryan that the doctor was going to give his eye a high five real quick, and he had to hold real still. This little exam is the difference between having to spend a day in day surgery and being able to have this be our only visit. And oh, did he scream and kick. She did manage to get the pressures, which she said were slightly elevated but probably just due to his screaming. I'm good with that. And I must say, this doctor was very pleasant.
Next we see the big doc, Dr. Weekley. This is the opthalmologist that made me want to go all redneck mama bear on him the first time we sat in the clinic at Children's on the emergency visit as scared, horse-in-a-fire first time parents who had just been sent on a flying trip to see what was up with our 3 month old baby. This dude blew in right out of surgery, I guess, in his scrubs, complete with hat, spouting "I want to see the baby with the cloudy eyes!" with an irreverence that, well, made me angry. But I digress...
Enter Dr. Weekley. Ryan walks up to him, points, and says "it's a woman!" again. I know! Should have known at that point we needed glasses. I held Ryan in my lap... and by "held" I mean "held down his arms and legs so he wouldn't kick the fire out of this dude"... while he refracted Ryan's dilated eyes. He gave us a script for glasses and sent us on our way, suggesting that we see Dr. Whitson (the surgeon who rebuilt Ryan's tearducts) to determine how he thinks the glaucoma thing is going.
Ok, now we're on our way to the closest Lens Crafters (they have one in Waco, and we wanted to get his glasses ASAP). After a call to Eric's Mom, we find that the nearest Lens Crafters is in Northpark Mall.
Goodie.
I used to like going places like that.... and if you don't know what I mean by that, here you go... the Lens Crafters is located in between Neiman Marcus and Barney's. Just across the way is the Gucci store. There is valet parking for these places! And while you shop, for a fee, they'll detail your car. I cannot imagine being able to just toss money around like that! So we felt a wee bit out of place, being the Target, Ross, and Marshall's-loving folk we are. By now Ryan is thouroughly disgusted with not being able to see. After a few times of persuading Ryan to take off his sunglasses and put on frames, most of which he promptly yanked off, we found them. I placed a pair of dark blue plastic frames on his face, he looked in the mirror, and exclaimed "yes!" Whew! Then was the whole measuring for the distance between his eyes thing... yeesh. Yes, everything is a challenge. Every. Little. Thing.
Fast forward to home a few hours later, and we make the rule that if he wants to play ipad, he must wear his glasses. So after saying "no glasses, no ipad" about fifty times, he got the idea. Then we noticed that he wasn't tilting his head to focus the right eye. His eyes are very opposite, one being farsighted and the other near. He still wasn't too thrilled with the idea of keeping them on, but as the evening wore on, we noticed Ryan pulling at them less and doing things on the ipad that, we assume, he hadn't been able to see to do before. After bedtime, we decided we'd wait and see in the morning how things went before we decided to send them to school.
Morning came, and at breakfast, Ryan fussed until he realized he didn't have his glasses. "Want your glasses?" he said, and we handed him his glasses. Well, guess we'll send them to school.
About 9:45, my phone rang and it was Ryan's teacher. UGH. Immediately, I thought it was going to be one of the standard three or four. Either he had messed his pants, was screaming and banging his head, or had a fever. Or worse, maybe his glasses were already broken or missing. GREAT.
"Just wanted to let you know, " she said, "that Ryan is having an awesome day. He hasn't taken off his glasses. He hasn't fussed at all."
I about fell over! I haven't been this thrilled with sudden progress since Ryan's first day of summer school in '08. He came home that day trying to communicate more than he ever had all of a sudden. Since he's been home today, he's not offered to take them off, either.
Back up now to that day I took Ryan in for that cold. If Dr. Orms hadn't caught the fact that the eye was a critical problem, Ryan would eventually have gone blind. Blind! Can you imagine everything we face on a daily basis PLUS blindness and horrible pain that comes with glaucoma?
Still thankful for that cold. Still thankful for that doctor in Fairfield who knew.
Whatever we're going through now, whatever trials we're facing, we have to remind ourselves that not only do we serve a God of 11:59 whose timing is perfect, but His plan is to prosper and not to harm us! (Jeremiah 29:11) We cannot always see how things are going to work, or why... and there are times we may never know the answer to "to what end".
But today, dear friends, I know. I know to what end, and therefore I will rejoice!!! I have been given one of the keys to unlocking my son's mind, and I am more than grateful! Believe, o weary one! Place your trust in Him, and have patience. Just as we're told in Hebrews 10:23, "Let us hold unswervingly to the hope we profess, for He who promised us is faithful!" I stand here today, promising with all confidence that God will not leave you hanging on for dear life without help! It may come in the form of a person, a word, a song, or His word, but hang in there... He will make a way!!! And when there's no way out, He will give you the encouragement you so desperately need to hang on.
How do I know?
MY SON CAN SEE!!!
Will you rejoice with me?
Come. People of the Risen King
Keith & Kristyn Getty & Stuart Townend
Come, people of the Risen King,
Who delight to bring Him praise;
Come all and tune your hearts to sing
To the Morning Star of grace.
From the shifting shadows of the earth
We will lift our eyes to Him,
Where steady arms of mercy reach
To gather children in.
REFRAIN
Rejoice, Rejoice! Let every tongue rejoice!
One heart, one voice; O Church of Christ, rejoice!
Come, those whose joy is morning sun,
And those weeping through the night;
Come, those who tell of battles won,
And those struggling in the fight.
For His perfect love will never change,
And His mercies never cease,
But follow us through all our days
With the certain hope of peace.
Come, young and old from every land -
Men and women of the faith;
Come, those with full or empty hands -
Find the riches of His grace.
Over all the world, His people sing -
Shore to shore we hear them call
The Truth that cries through every age:
“Our God is all in all”!
Yes, I know you knew that. But today, in a time when I've had to hang on so tight to the hope we profess just to keep a smile on my face, I have had a heaping pile of wonderful dropped from heaven.
Ryan had the best day at school... maybe the best day ever.
Okay, I have to back up a bit. If you don't know about our history with Ryan and pediatric glaucoma, you should go here and read Ryan's Story.
Well, didja?
Okay good. I knew you would! Y'all are so good to me.
So you can see that Ryan is not new to the world of vision trouble. When he was just 9 months old he had glasses for a while, but at some point after he was about 18 months old or so, he quit leaving them on. After that, they were never quite sure if he really needed them or not, and being the family living on *a* teacher's salary, we chose to wait. They had been doing exams under anesthesia, and after the last time about two years ago when he came out of anesthesia kicking and screaming, I got a little spooked. This was also the time we were beginning to talk about autism, and I just wasn't comfortable with Ryan going under general anesthesia to have his eyes checked. They always came back saying they were sure the glaucoma was well under control. So with the doctor's blessing, we waited a while.
Yesterday was Ryan's first appointment in 2 years. These appointments are not just going down the street to the doctor's office. These involve a trip to Dallas, sometimes in the middle of the week. We live about an hour and forty-five minutes from the big D, and if we can get an appointment on a Monday or Friday, we can stay in Richardson (ANY excuse to go see Grammy and Grampy). Otherwise it's to Children's in Dallas and back... with three kids.
Sounds tempting, no?
Now, if you don't know Ryan or you don't have an ASD child, you may be thinking "Trip to the opthalmologist? It's not like the dentist, for goodness sake! What's the big deal?" The big deal is that Ryan doesn't process verbal instruction just real well. Add to that a new environment, lack of communication skill other than screaming and kicking, and here we go! All you ASD parents know where I am with this. You might as well be pulling teeth without anesthesia. The assisting resident came in, a pretty twentysomething with brown hair and a precious smile. Ryan walked right up to her and pointed, saying "it's a woman!" Thankfully, she thought it was cute. After she thanked him for not thinking she was a man, we had to let the sweet resident shine a couple of lights at him... still not sure what she was doing, but Ryan wasn't impressed. Then came the fun part.
Ever had your pressures checked? Ever had your eyes dilated?
Yep, had to do both while the nurse and I held Ryan while she did both. I tried to tell Ryan that the doctor was going to give his eye a high five real quick, and he had to hold real still. This little exam is the difference between having to spend a day in day surgery and being able to have this be our only visit. And oh, did he scream and kick. She did manage to get the pressures, which she said were slightly elevated but probably just due to his screaming. I'm good with that. And I must say, this doctor was very pleasant.
Next we see the big doc, Dr. Weekley. This is the opthalmologist that made me want to go all redneck mama bear on him the first time we sat in the clinic at Children's on the emergency visit as scared, horse-in-a-fire first time parents who had just been sent on a flying trip to see what was up with our 3 month old baby. This dude blew in right out of surgery, I guess, in his scrubs, complete with hat, spouting "I want to see the baby with the cloudy eyes!" with an irreverence that, well, made me angry. But I digress...
Enter Dr. Weekley. Ryan walks up to him, points, and says "it's a woman!" again. I know! Should have known at that point we needed glasses. I held Ryan in my lap... and by "held" I mean "held down his arms and legs so he wouldn't kick the fire out of this dude"... while he refracted Ryan's dilated eyes. He gave us a script for glasses and sent us on our way, suggesting that we see Dr. Whitson (the surgeon who rebuilt Ryan's tearducts) to determine how he thinks the glaucoma thing is going.
Ok, now we're on our way to the closest Lens Crafters (they have one in Waco, and we wanted to get his glasses ASAP). After a call to Eric's Mom, we find that the nearest Lens Crafters is in Northpark Mall.
Goodie.
I used to like going places like that.... and if you don't know what I mean by that, here you go... the Lens Crafters is located in between Neiman Marcus and Barney's. Just across the way is the Gucci store. There is valet parking for these places! And while you shop, for a fee, they'll detail your car. I cannot imagine being able to just toss money around like that! So we felt a wee bit out of place, being the Target, Ross, and Marshall's-loving folk we are. By now Ryan is thouroughly disgusted with not being able to see. After a few times of persuading Ryan to take off his sunglasses and put on frames, most of which he promptly yanked off, we found them. I placed a pair of dark blue plastic frames on his face, he looked in the mirror, and exclaimed "yes!" Whew! Then was the whole measuring for the distance between his eyes thing... yeesh. Yes, everything is a challenge. Every. Little. Thing.
Fast forward to home a few hours later, and we make the rule that if he wants to play ipad, he must wear his glasses. So after saying "no glasses, no ipad" about fifty times, he got the idea. Then we noticed that he wasn't tilting his head to focus the right eye. His eyes are very opposite, one being farsighted and the other near. He still wasn't too thrilled with the idea of keeping them on, but as the evening wore on, we noticed Ryan pulling at them less and doing things on the ipad that, we assume, he hadn't been able to see to do before. After bedtime, we decided we'd wait and see in the morning how things went before we decided to send them to school.
Morning came, and at breakfast, Ryan fussed until he realized he didn't have his glasses. "Want your glasses?" he said, and we handed him his glasses. Well, guess we'll send them to school.
About 9:45, my phone rang and it was Ryan's teacher. UGH. Immediately, I thought it was going to be one of the standard three or four. Either he had messed his pants, was screaming and banging his head, or had a fever. Or worse, maybe his glasses were already broken or missing. GREAT.
"Just wanted to let you know, " she said, "that Ryan is having an awesome day. He hasn't taken off his glasses. He hasn't fussed at all."
I about fell over! I haven't been this thrilled with sudden progress since Ryan's first day of summer school in '08. He came home that day trying to communicate more than he ever had all of a sudden. Since he's been home today, he's not offered to take them off, either.
Back up now to that day I took Ryan in for that cold. If Dr. Orms hadn't caught the fact that the eye was a critical problem, Ryan would eventually have gone blind. Blind! Can you imagine everything we face on a daily basis PLUS blindness and horrible pain that comes with glaucoma?
Still thankful for that cold. Still thankful for that doctor in Fairfield who knew.
Whatever we're going through now, whatever trials we're facing, we have to remind ourselves that not only do we serve a God of 11:59 whose timing is perfect, but His plan is to prosper and not to harm us! (Jeremiah 29:11) We cannot always see how things are going to work, or why... and there are times we may never know the answer to "to what end".
But today, dear friends, I know. I know to what end, and therefore I will rejoice!!! I have been given one of the keys to unlocking my son's mind, and I am more than grateful! Believe, o weary one! Place your trust in Him, and have patience. Just as we're told in Hebrews 10:23, "Let us hold unswervingly to the hope we profess, for He who promised us is faithful!" I stand here today, promising with all confidence that God will not leave you hanging on for dear life without help! It may come in the form of a person, a word, a song, or His word, but hang in there... He will make a way!!! And when there's no way out, He will give you the encouragement you so desperately need to hang on.
How do I know?
MY SON CAN SEE!!!
Will you rejoice with me?
Come. People of the Risen King
Keith & Kristyn Getty & Stuart Townend
Come, people of the Risen King,
Who delight to bring Him praise;
Come all and tune your hearts to sing
To the Morning Star of grace.
From the shifting shadows of the earth
We will lift our eyes to Him,
Where steady arms of mercy reach
To gather children in.
REFRAIN
Rejoice, Rejoice! Let every tongue rejoice!
One heart, one voice; O Church of Christ, rejoice!
Come, those whose joy is morning sun,
And those weeping through the night;
Come, those who tell of battles won,
And those struggling in the fight.
For His perfect love will never change,
And His mercies never cease,
But follow us through all our days
With the certain hope of peace.
Come, young and old from every land -
Men and women of the faith;
Come, those with full or empty hands -
Find the riches of His grace.
Over all the world, His people sing -
Shore to shore we hear them call
The Truth that cries through every age:
“Our God is all in all”!
Monday, May 9, 2011
Mother's Day Cards
Wow... what a fabulous Mother's Day weekend was had by all in this family! I feel completely spoiled rotten. To cap off a wonderful weekend, Eric and the other guy in our small group (it really is a "small" group... tee-hee) made dinner last night AND did all the dishes from the weekend. Yep, I dropped that ball bigtime this weekend... we had a great time running around and enjoying each other and I didn't log much time in front of the sink. Due to a generous gift from a fabulous couple, we took the kids to the Mayborn Museum in Waco and had a blast... there will be a post and pictures from that later.
But the best parts of my Mother's Day were the encouragement that overflowed from my dear family and friends. Especially from my dear Eric and my Mama. All of you who commented, hugged, or hit the "like" button, or shared the page so that the news that we're not alone might reach one more person, thank you from the depths of my soul.
Can't lie... Mother's Day is important to me, but the most important part is getting to be with my kids in church. Looking in the rearview mirror (the kid one... you know, the kind that hangs below the actual rearview mirror, revealing who's poking who in the backseat) as we crossed the railroad tracks during the three minute drive to church, my heart was struck with amazement at the kids. "Look at my babies!" I said to Eric. One of the few delicious moments of normalcy in our lives. All three kids, dressed for church. Ryan, with his striped blue dress shirt and khakis and huge blue eyes; Richie, in his plaid blue, green and white shirt and khakis with golden curls swept to the back of his head; Maelynn, in her brown and pink dress with little brown fountain pigtails spouting from her sweet head. Many times I'm shocked for a moment that I have it all... the house on the corner with a giant tree in the front yard, two boys and a girl, not to mention the best husband ever to stand at the altar. Yep, folks... even with the challenges, it's a fairy tale. After all, we all know that every fairy tale has a villain of a sort. There's a great challenge for some mama or daddy who can draw... a cartoon representation of the villain of autism. If only there were magic words. But I digress.
Once we were at church, we did the usual divide and conquer. Eric took Ryan to Sunday school through the south door so we could avoid walking by the nursery and room with a train table. Ryan knows he doesn't want to go to the nursery, and can at times decide to pitch a fit when we walk by and stop to take the littles. That or he'll run on by himself. Either way, not the best option. I take the littles to the door halway to the other end of the building. We always meet back at the van, where I get my precious coffee from the cupholder, and grab our bibles and my purse, then head to Sunday school for us. This is the one time during the week we can walk hand-in-hand, not concerned with playing "whack a mole" (my affectionate term for trying to herd the kids) and we love it.
A little over halfway through class, one of our teacher's/friend's kids came in, having been let out early himself. No biggie, he's a sweetie and just wanted to check in to go to the playground. Cool. Not five minutes later, here he comes, same little guy, this time with a message. "Mrs. Senzig, Ryan's stuck in a swing." He reported just as sweetly and calmly as one could... actually, the media could use some guys like him. So I hop up and go to the rescue.
Ryan has a thing about the baby swings. They're comfortable, and they're routine. One of those things, like Elmo and the Baby Einstein "Meet the Orchestra" video, we can't seem to outgrow. He'd managed to get into a swing, and from what I heard, didn't want to get out, not that I'm sure he could if he'd tried. So I lifted my nearly six-year-old boy, and his sweet teacher wrested his feet from the leg-holes. He was throwing a pretty good fit, too, so I just decided to take him with me. After a little yelling from his perch on my hip, Ryan chilled out as much as Ryan chills out, and we made our way to Mommy and Daddy's class. He sat on my lap and snuggled, and since there wasn't much to check out in the room, he was pretty calm. We finished our lesson and made it to church, talking outside the Sunday school room a lot less than usual to keep him moving and calm. Being a southern mama, I want my kids to be polite, thank you ma'am... so I encourage him to say "hi" to the people we meet and especially those who say hi to him.
Guess I asked him to say "hi" just once too much, because as we entered the sanctuary and I asked him to say "Hi" again, Ryan began to scream, "SAY HIIII!!!! SAY HIIII!!!" over and over. Really loud. Our poor interim pastor had to address the congregation a couple of times, I think... can't say for sure, because like I said, I had Mr. Don't-make-me-say-hi-one-more-time at the end of my arm. I ducked my head down, tried to smile at the people who made eye contact (whether or not they smiled back) and made my way to our seat. Once seated, the fit continued for a minute, but if I can stay calm there's a much better chance he'll regain his composure. This time it worked. I asked if he'd like to snuggle mommy, and he replied "snuggle mommy", so he laid his head on my lap. He was minimally noisy, and as long as I remained seated while everyone else stood for singing, etc., he was pretty great. I was able to worship, stroking his little buzz-cut head all the way through the song part of the service. I was internally doing cartwheels! Maybe the change in routine wouldn't hurt that much! Maybe the fits due to the change wouldn't tank us today! Take that, autism!
For the special music, a lady in the church sang a song I'd never heard, and it was obviously themed for Mother's Day. It was too perfect, and I had to google it so I could share it with you.
You Cannot Lose My Love
-Sara Groves
You will lose your baby teeth.
At times, you'll lose your faith in me.
You will lose a lot of things,
But you cannot lose my love.
You may lose your appetite,
Your guiding sense of wrong and right.
You may lose your will to fight,
But you cannot lose my love.
You will lose your confidence.
In times of trial, your common sense.
You may lose your innocence,
But you cannot lose my love.
Many things can be misplaced;
Your very memories be erased.
No matter what the time or space,
You cannot lose my love.
You cannot lose,
You cannot lose,
You cannot lose my love.
To Ryan, Richie, and Maelynn... I tell you now what I told your aunt Bree when she was little... you can't do anything that could make me stop loving you.
That's not an uncommon theme among mothers. I think all of us would agree with every word! But as I listened, with my special Ryan in my lap, the tears poured. Parents with special needs kids, I think we can all agree that...
They may not be potty trained,
Not much we say may be retained,
Though meltdowns our strength, they drain...
They'll never lose our love.
Though they may not fit the mold,
Others, our parenting, they'll question and scold,
Though they can't tell us if they're hungry, scared, or cold,
They'll never lose our love.
Though they may stim and hum,
They might scream till our ears are numb,
We may have to argue that they're not "dumb",
They'll never lose our love.
We may live in total lockdown,
Our stomachs may churn as we drive to town,
They might pound their heads on the ground,
But they'll never lose our love.
See, no matter where he fits or doesn't, no matter how many things I choose to stay home from to avoid trauma to all of us, no matter whether he makes it in Kindergarten next year, no matter where he's accepted or where he's not, he is accepted here. He is accepted in our home and our hearts. Just like I speak to all the kids every night, Jeremiah 29:11 tells us that God has a plan and purpose for our lives! Not "just typically-abled kids" or "kids who look like everyone else". Not just the people who strive to fit in and lose themselves in the pursuit of acceptance on this earth... EVERYONE.
Special needs parents... we don't always realize *ourselves* what we do. How different and hard it can be. I've fought against letting myself believe this, but I think it's because I was scared to think about it... as in, if I think about it, I'll start feeling sorry, then what's going to happen? So in the pursuit of not feeling sorry, I took it a step too far and began to run a wee bit too far in the other direction. I'm normal! See? I'm normal!
Psscht.
No, I'm not, and my life isn't, either. I have to realize that, and deal with it.
Deal with it?
Yep, play the cards. Not just hide them. From what I remember about playing "Pitch" with Nanny, Grandad, and Pop, Nanny's dad, it doesn't do you any good toward winning the game if you just keep everyone from seeing your cards. You have cards in your hand, and to have even a chance at winning, you have to PLAY THEM. Not just throw them on the table in a huff. Think through it, paying attention to what's played and what your partner has played. To use them to your advantage, you must take a good look at what you have and make a plan. And that plan only lasts as long as the hand lasts, then you get another one. You may have to change strategies, looking at the changes in what you're dealt with every hand. Which reminds me of Nanny and Grandad... when they got a hand they didn't like, they'd often say "Who dealt this mess?!" But often, the next hand would be perfect. But to get to the next hand, you have to play through the "mess".
And when you look at the "mess" versus the perfect hands... or even the ones that just work out... it's going to be better than alright. It's going to be God's best. As long as I look to him for the next step, the next card to play and how to play it, it's going to be God's best. Hang in there with me, y'all. We have to keep praying for each other and our kids, and waking up every day asking desperately for the wisdom, patience, and faith to live our lives today, not let them live us. There may be only one hand dealt in the day, but too often there are several.
That church service I was talking about? Yeah, Ryan got into the floor, then hit his head a couple of times, causing him to fuss... so we wound up walking out to the foyer to wait out the sermon. But after it was over, we had the rare treat of going to Mother's Day lunch with a couple of friends and their kids that we never get to see. And the rest of the day was just wonderful. If I'd tossed my cards on the table and told it all where to go when Ryan walked in screaming, I'd have missed that song. If I'd let embarrassment get the best of me and left in a huff when the fussing started, I'd have missed the two girls just a touch older than Ryan coming out of the balcony and doing their best to visit with him, begging me to let them entertain him till the end.
Yep, the great hands I'm dealt far outweigh the cruddy ones. But if I choose to forget that, I'll forfeit my turn, and lose.
And for my babies, that's simply not acceptable.
Keep playing.
But the best parts of my Mother's Day were the encouragement that overflowed from my dear family and friends. Especially from my dear Eric and my Mama. All of you who commented, hugged, or hit the "like" button, or shared the page so that the news that we're not alone might reach one more person, thank you from the depths of my soul.
Can't lie... Mother's Day is important to me, but the most important part is getting to be with my kids in church. Looking in the rearview mirror (the kid one... you know, the kind that hangs below the actual rearview mirror, revealing who's poking who in the backseat) as we crossed the railroad tracks during the three minute drive to church, my heart was struck with amazement at the kids. "Look at my babies!" I said to Eric. One of the few delicious moments of normalcy in our lives. All three kids, dressed for church. Ryan, with his striped blue dress shirt and khakis and huge blue eyes; Richie, in his plaid blue, green and white shirt and khakis with golden curls swept to the back of his head; Maelynn, in her brown and pink dress with little brown fountain pigtails spouting from her sweet head. Many times I'm shocked for a moment that I have it all... the house on the corner with a giant tree in the front yard, two boys and a girl, not to mention the best husband ever to stand at the altar. Yep, folks... even with the challenges, it's a fairy tale. After all, we all know that every fairy tale has a villain of a sort. There's a great challenge for some mama or daddy who can draw... a cartoon representation of the villain of autism. If only there were magic words. But I digress.
Once we were at church, we did the usual divide and conquer. Eric took Ryan to Sunday school through the south door so we could avoid walking by the nursery and room with a train table. Ryan knows he doesn't want to go to the nursery, and can at times decide to pitch a fit when we walk by and stop to take the littles. That or he'll run on by himself. Either way, not the best option. I take the littles to the door halway to the other end of the building. We always meet back at the van, where I get my precious coffee from the cupholder, and grab our bibles and my purse, then head to Sunday school for us. This is the one time during the week we can walk hand-in-hand, not concerned with playing "whack a mole" (my affectionate term for trying to herd the kids) and we love it.
A little over halfway through class, one of our teacher's/friend's kids came in, having been let out early himself. No biggie, he's a sweetie and just wanted to check in to go to the playground. Cool. Not five minutes later, here he comes, same little guy, this time with a message. "Mrs. Senzig, Ryan's stuck in a swing." He reported just as sweetly and calmly as one could... actually, the media could use some guys like him. So I hop up and go to the rescue.
Ryan has a thing about the baby swings. They're comfortable, and they're routine. One of those things, like Elmo and the Baby Einstein "Meet the Orchestra" video, we can't seem to outgrow. He'd managed to get into a swing, and from what I heard, didn't want to get out, not that I'm sure he could if he'd tried. So I lifted my nearly six-year-old boy, and his sweet teacher wrested his feet from the leg-holes. He was throwing a pretty good fit, too, so I just decided to take him with me. After a little yelling from his perch on my hip, Ryan chilled out as much as Ryan chills out, and we made our way to Mommy and Daddy's class. He sat on my lap and snuggled, and since there wasn't much to check out in the room, he was pretty calm. We finished our lesson and made it to church, talking outside the Sunday school room a lot less than usual to keep him moving and calm. Being a southern mama, I want my kids to be polite, thank you ma'am... so I encourage him to say "hi" to the people we meet and especially those who say hi to him.
Guess I asked him to say "hi" just once too much, because as we entered the sanctuary and I asked him to say "Hi" again, Ryan began to scream, "SAY HIIII!!!! SAY HIIII!!!" over and over. Really loud. Our poor interim pastor had to address the congregation a couple of times, I think... can't say for sure, because like I said, I had Mr. Don't-make-me-say-hi-one-more-time at the end of my arm. I ducked my head down, tried to smile at the people who made eye contact (whether or not they smiled back) and made my way to our seat. Once seated, the fit continued for a minute, but if I can stay calm there's a much better chance he'll regain his composure. This time it worked. I asked if he'd like to snuggle mommy, and he replied "snuggle mommy", so he laid his head on my lap. He was minimally noisy, and as long as I remained seated while everyone else stood for singing, etc., he was pretty great. I was able to worship, stroking his little buzz-cut head all the way through the song part of the service. I was internally doing cartwheels! Maybe the change in routine wouldn't hurt that much! Maybe the fits due to the change wouldn't tank us today! Take that, autism!
For the special music, a lady in the church sang a song I'd never heard, and it was obviously themed for Mother's Day. It was too perfect, and I had to google it so I could share it with you.
You Cannot Lose My Love
-Sara Groves
You will lose your baby teeth.
At times, you'll lose your faith in me.
You will lose a lot of things,
But you cannot lose my love.
You may lose your appetite,
Your guiding sense of wrong and right.
You may lose your will to fight,
But you cannot lose my love.
You will lose your confidence.
In times of trial, your common sense.
You may lose your innocence,
But you cannot lose my love.
Many things can be misplaced;
Your very memories be erased.
No matter what the time or space,
You cannot lose my love.
You cannot lose,
You cannot lose,
You cannot lose my love.
To Ryan, Richie, and Maelynn... I tell you now what I told your aunt Bree when she was little... you can't do anything that could make me stop loving you.
That's not an uncommon theme among mothers. I think all of us would agree with every word! But as I listened, with my special Ryan in my lap, the tears poured. Parents with special needs kids, I think we can all agree that...
They may not be potty trained,
Not much we say may be retained,
Though meltdowns our strength, they drain...
They'll never lose our love.
Though they may not fit the mold,
Others, our parenting, they'll question and scold,
Though they can't tell us if they're hungry, scared, or cold,
They'll never lose our love.
Though they may stim and hum,
They might scream till our ears are numb,
We may have to argue that they're not "dumb",
They'll never lose our love.
We may live in total lockdown,
Our stomachs may churn as we drive to town,
They might pound their heads on the ground,
But they'll never lose our love.
See, no matter where he fits or doesn't, no matter how many things I choose to stay home from to avoid trauma to all of us, no matter whether he makes it in Kindergarten next year, no matter where he's accepted or where he's not, he is accepted here. He is accepted in our home and our hearts. Just like I speak to all the kids every night, Jeremiah 29:11 tells us that God has a plan and purpose for our lives! Not "just typically-abled kids" or "kids who look like everyone else". Not just the people who strive to fit in and lose themselves in the pursuit of acceptance on this earth... EVERYONE.
Special needs parents... we don't always realize *ourselves* what we do. How different and hard it can be. I've fought against letting myself believe this, but I think it's because I was scared to think about it... as in, if I think about it, I'll start feeling sorry, then what's going to happen? So in the pursuit of not feeling sorry, I took it a step too far and began to run a wee bit too far in the other direction. I'm normal! See? I'm normal!
Psscht.
No, I'm not, and my life isn't, either. I have to realize that, and deal with it.
Deal with it?
Yep, play the cards. Not just hide them. From what I remember about playing "Pitch" with Nanny, Grandad, and Pop, Nanny's dad, it doesn't do you any good toward winning the game if you just keep everyone from seeing your cards. You have cards in your hand, and to have even a chance at winning, you have to PLAY THEM. Not just throw them on the table in a huff. Think through it, paying attention to what's played and what your partner has played. To use them to your advantage, you must take a good look at what you have and make a plan. And that plan only lasts as long as the hand lasts, then you get another one. You may have to change strategies, looking at the changes in what you're dealt with every hand. Which reminds me of Nanny and Grandad... when they got a hand they didn't like, they'd often say "Who dealt this mess?!" But often, the next hand would be perfect. But to get to the next hand, you have to play through the "mess".
And when you look at the "mess" versus the perfect hands... or even the ones that just work out... it's going to be better than alright. It's going to be God's best. As long as I look to him for the next step, the next card to play and how to play it, it's going to be God's best. Hang in there with me, y'all. We have to keep praying for each other and our kids, and waking up every day asking desperately for the wisdom, patience, and faith to live our lives today, not let them live us. There may be only one hand dealt in the day, but too often there are several.
That church service I was talking about? Yeah, Ryan got into the floor, then hit his head a couple of times, causing him to fuss... so we wound up walking out to the foyer to wait out the sermon. But after it was over, we had the rare treat of going to Mother's Day lunch with a couple of friends and their kids that we never get to see. And the rest of the day was just wonderful. If I'd tossed my cards on the table and told it all where to go when Ryan walked in screaming, I'd have missed that song. If I'd let embarrassment get the best of me and left in a huff when the fussing started, I'd have missed the two girls just a touch older than Ryan coming out of the balcony and doing their best to visit with him, begging me to let them entertain him till the end.
Yep, the great hands I'm dealt far outweigh the cruddy ones. But if I choose to forget that, I'll forfeit my turn, and lose.
And for my babies, that's simply not acceptable.
Keep playing.
Tuesday, May 3, 2011
It's Going to Be Alright
Today Richie, Maelynn and I had a pretty regular day. We had our breakfast, then the kids played while I got my shopping list together. Eventually I was ready enough to walk through our local grocery store without making anyone too frightened or winding up on one of those joke websites of people with the newer age equivalent of toilet paper on their shoes. Diapers washed, kids in clean clothes and with clean faces, and I even had a clean travel coffee mug in the cabinet which was quickly filled with that wonderful stuff that I drink for the protection of those around me. The store had everything I needed, and even some on sale. Mae didn't lose her binky. The kids were sibling-fussy but overall not bad. Gas was less than it is in town, and after (what should have been as much as it cost) a fill up, I was on my way back to Groesbeck. Back in town before naptime, kids took their naps and I started laundry, dishes, and wading through the grocery put-away process. Stuck the kids in the van when 2:40 came and picked up Ryan, who fussed his usual fuss when we didn't turn to go to Waco to see Miss Staci, but nothing major.
The rest of the evening went much as this... and it was fabulous. It was like a day off. Ryan was so great, and only minimal fussing but no meltdowns! He had a better day at school too. Richie is talking more and more and is taking more care of his big brother, which is so sweet. When Ryan fusses in the van, Richie says "Shh, Wyan... it's okay." When he won't eat, Richie says, "eatcha food, Wyan" in the most gentle yet concerned way an almost three year-old could. But the latter wasn't needed... Ryan ate THREE PLATES of taco salad! Okay, it's meat, beans, chips and cheese but he ATE and it wasn't pizza. Much celebration ensued! Ryan was allowed a brownie and received much fanfare for his performance at the dinner table! Richie wasn't left out... he had two plates and got to have some sliced "pomato" for dinner. I know, right? One who won't eat anything and one who just wants tomatoes for dessert. God knew I needed a break in that area! After dinner, we went outside and played until it got too close to bedtime. Mae had a blast playing in poor Jedi's water (yes, I got him more) and Richie ran around the yard and slid down the slide. The next part was too cool.
Eric and I sat on the porch swing on the patio that overlooks the yard, and Ryan climbed up and laid across our laps. He was content to be there with us... no fussing, no beating his ears, no banging his head, no asking for Miss Staci.
He felt like my precious baby boy again.
He snuggled in our laps in a way that reminded me somehow of the night of the day he was born. I remember less of that day than I wish I did (thanks, demerol). But I do remember sitting up at about three in the morning in the hospital bed, holding this perfect little person. I remember the amazement that I was finally a mother. I was the mommy. It was surreal that this tiny little guy was now my responsibility. It was raining that night in Denton, and I remember looking out the window, watching it rain, praying for Ryan. Praying for us. As the rain slapped the window, by the light of the cracked bathroom door and the sound of my husband sleeping on a cot at the foot of the bed, I sat praying for Eric Ryan Senzig's whole life... his relationship with Christ, his future wife, even. That moment was unforgettable. The peace was amazing. We were a family! I'd wanted to be wife and mommy my whole life, and there you go. We went in that morning to have him turned (he was breech), and we decided to go ahead and have him that day. So it was go in surgery, come out with a baby. Yes, the nine months before I knew it was coming, but you can never know what it's really like until you're living it.
In the same way, I can't know what you're going through. You can tell me, and I will listen. I will do my best to encourage you, and try to empathize as best I can. Even if I walked your days right by your side, I can still never know exactly how you feel. Those of you who have an ASD child come closest, and that understanding is such a relief. Those of you who have worked with autistic kids have a good idea, too. But the best? The best thing ever is when people simply listen, admit they can't understand, maybe even ask a few questions... but admit they can't understand. Not necessarily feel sorry for us... Ryan is an amazing child! He is smarter than I am. I'm sure of that. And what an incredible gift to be the mother of three children! I am blessed beyond measure every day of my life whether I feel like it or not. But showing that you believe Eric and I are doing the best we can... trusting that we are doing the best we can... is the best way to offer human comfort.
It's just that some days, the differences seem to jump out and taunt you. Like I said before, I understand that getting my feelings hurt is going to be part of the growing pains of life for us, and I'm all for dealing with that and accepting it. But when those things jump out and smack me, my first instinct is to want to protect. Right now the act of leaving the house with all three kids ensures me an interesting time. One 15 month old, one 2 3/4 year old, and one nearly six year old who is on a 2 year old emotional and social level, plus one mother... versus the grocery store. Versus anywhere. I look at these things and pray with all my heart to "just please God let me be able to stay calm!" "Please God let me be able to keep them safe!" "Please God help me learn to handle this! Give me the strength, peace and energy! I SO can't do this without You, Lord!" That's what most of my prayers for the day look like. Until yesterday.
Yesterday, I ran across Psalm 139 and realized how, although I pray every day for my kids, I believe in my kids, I still looked at autism as something inflicted upon Ryan... as something that, I don't know, maybe some outside source caused. Not a believer in the conspiracy theories of what causes autism, one would wonder why this never occurred to me before. Psalm 139 applies to Ryan. I know, I know... we knew that. I tell my kids all the time that they are "fearfully and wonderfully made" and that God made them special and loves them very much (thank you, Bob and Larry).
So now, instead of praying that I can simply handle the fits, the meltdowns (and there is a difference), the fears, the impulses, the triggers... I promise you that I am praying that God will help me get to know Ryan... to ENJOY him, not survive him. Help me go back to that precious, peaceful first night of his life outside his mommy. God knows Ryan. He knows when Ryan "sits down and rises up," and He "discerns his thoughts from afar". He knows what Ryan is thinking! All this time I've been whining and crying and broken hearted over no one knowing what he's thinking... but God does! God does, and I want to. Hmm. What to do?
ASK, for cryin' in a bucket! ASK! I've said before in other times that one of the biggest lessons I've learned from my son about God is that He, as our Father, just wants to visit with us. To know what we think, feel, and desire... to hear it from US. To hear our voices cry out to Him in excitement and in fear, in joy and in hopelessness, in desperation and in times of plenty. Instead of praying to survive, I'm going to start praying for God to help me know and enjoy my children... especially the one who doesn't communicate so much. So if you'll allow me a little poetic liscence...
Psalm 139:1-10 (ESV... with Mama paraphrasing)
1O LORD, you have searched Ryan and know him!
2You know when he sits down and when he rises up;
you discern his thoughts from afar.
3You search out Ryan's path and his lying down
and are acquainted with all his ways.
4Even before a word is on Ryan's tongue,
behold, O LORD, you know it altogether.
5You hem Ryan in, behind and before,
and lay your hand upon him.
6Such knowledge is too wonderful for me;
it is high; I cannot attain it.
7Where shall Ryan go from your Spirit?
Or where shall he flee from your presence?
8 If Ryan ascends to heaven, you are there!
If he makes his bed in Sheol, you are there!
9If Ryan takes the wings of the morning
and dwells in the uttermost parts of the sea,
10even there your hand shall lead him,
and your right hand shall hold him.
God made Ryan and knows him far better than I do. He was there that rainy night in Denton, and he's here with us every day. He's with Ryan at school, on the playground, and in Sunday school. In ways I cannot, He can comfort Ryan, Richie, Maelynn... and me. Last night as I was surfing around on the various sites I visit, I found a link to this song. It's by Sara Groves, and I looked it up on Grooveshark (click and you can listen free) and sat and listened over and over as the tears fell because it hits home so accurately. It's Going to Be Alright... and it really is. Maybe it won't always feel that way. I can assure you it won't feel that way. There will be rough times, but I'll keep doing my best, seeking the Lord's help, and it's going to be alright. Not just for me... but for you, too, in whatever it is that I can't understand.
"It's Going to Be Alright"
By Sara Groves and Gordon Kennedy
It's going to be alright
It's going to be alright
I can tell by your eyes that you're not getting any sleep
And you try to rise above it, but feel you're sinking in too deep
Oh, oh I believe, I believe that
It's going to be alright
It's going to be alright
I believe you'll outlive this pain in you heart
And you'll gain such a strength from what is tearing you apart
Oh, oh I believe I believe that
It's going to be alright
It's going to be alright
When some time has past us, and the story if retold
It will mirror the strength and the courage in your soul
Oh, oh, I believe I believe,
I believe
I believe
I did not come here to offer you cliché's
I will not pretend to know of all your pain
Just when you cannot, then I will hold out faith, for you
It's going to be alright
It's going to be alright
The rest of the evening went much as this... and it was fabulous. It was like a day off. Ryan was so great, and only minimal fussing but no meltdowns! He had a better day at school too. Richie is talking more and more and is taking more care of his big brother, which is so sweet. When Ryan fusses in the van, Richie says "Shh, Wyan... it's okay." When he won't eat, Richie says, "eatcha food, Wyan" in the most gentle yet concerned way an almost three year-old could. But the latter wasn't needed... Ryan ate THREE PLATES of taco salad! Okay, it's meat, beans, chips and cheese but he ATE and it wasn't pizza. Much celebration ensued! Ryan was allowed a brownie and received much fanfare for his performance at the dinner table! Richie wasn't left out... he had two plates and got to have some sliced "pomato" for dinner. I know, right? One who won't eat anything and one who just wants tomatoes for dessert. God knew I needed a break in that area! After dinner, we went outside and played until it got too close to bedtime. Mae had a blast playing in poor Jedi's water (yes, I got him more) and Richie ran around the yard and slid down the slide. The next part was too cool.
Eric and I sat on the porch swing on the patio that overlooks the yard, and Ryan climbed up and laid across our laps. He was content to be there with us... no fussing, no beating his ears, no banging his head, no asking for Miss Staci.
He felt like my precious baby boy again.
He snuggled in our laps in a way that reminded me somehow of the night of the day he was born. I remember less of that day than I wish I did (thanks, demerol). But I do remember sitting up at about three in the morning in the hospital bed, holding this perfect little person. I remember the amazement that I was finally a mother. I was the mommy. It was surreal that this tiny little guy was now my responsibility. It was raining that night in Denton, and I remember looking out the window, watching it rain, praying for Ryan. Praying for us. As the rain slapped the window, by the light of the cracked bathroom door and the sound of my husband sleeping on a cot at the foot of the bed, I sat praying for Eric Ryan Senzig's whole life... his relationship with Christ, his future wife, even. That moment was unforgettable. The peace was amazing. We were a family! I'd wanted to be wife and mommy my whole life, and there you go. We went in that morning to have him turned (he was breech), and we decided to go ahead and have him that day. So it was go in surgery, come out with a baby. Yes, the nine months before I knew it was coming, but you can never know what it's really like until you're living it.
In the same way, I can't know what you're going through. You can tell me, and I will listen. I will do my best to encourage you, and try to empathize as best I can. Even if I walked your days right by your side, I can still never know exactly how you feel. Those of you who have an ASD child come closest, and that understanding is such a relief. Those of you who have worked with autistic kids have a good idea, too. But the best? The best thing ever is when people simply listen, admit they can't understand, maybe even ask a few questions... but admit they can't understand. Not necessarily feel sorry for us... Ryan is an amazing child! He is smarter than I am. I'm sure of that. And what an incredible gift to be the mother of three children! I am blessed beyond measure every day of my life whether I feel like it or not. But showing that you believe Eric and I are doing the best we can... trusting that we are doing the best we can... is the best way to offer human comfort.
It's just that some days, the differences seem to jump out and taunt you. Like I said before, I understand that getting my feelings hurt is going to be part of the growing pains of life for us, and I'm all for dealing with that and accepting it. But when those things jump out and smack me, my first instinct is to want to protect. Right now the act of leaving the house with all three kids ensures me an interesting time. One 15 month old, one 2 3/4 year old, and one nearly six year old who is on a 2 year old emotional and social level, plus one mother... versus the grocery store. Versus anywhere. I look at these things and pray with all my heart to "just please God let me be able to stay calm!" "Please God let me be able to keep them safe!" "Please God help me learn to handle this! Give me the strength, peace and energy! I SO can't do this without You, Lord!" That's what most of my prayers for the day look like. Until yesterday.
Yesterday, I ran across Psalm 139 and realized how, although I pray every day for my kids, I believe in my kids, I still looked at autism as something inflicted upon Ryan... as something that, I don't know, maybe some outside source caused. Not a believer in the conspiracy theories of what causes autism, one would wonder why this never occurred to me before. Psalm 139 applies to Ryan. I know, I know... we knew that. I tell my kids all the time that they are "fearfully and wonderfully made" and that God made them special and loves them very much (thank you, Bob and Larry).
So now, instead of praying that I can simply handle the fits, the meltdowns (and there is a difference), the fears, the impulses, the triggers... I promise you that I am praying that God will help me get to know Ryan... to ENJOY him, not survive him. Help me go back to that precious, peaceful first night of his life outside his mommy. God knows Ryan. He knows when Ryan "sits down and rises up," and He "discerns his thoughts from afar". He knows what Ryan is thinking! All this time I've been whining and crying and broken hearted over no one knowing what he's thinking... but God does! God does, and I want to. Hmm. What to do?
ASK, for cryin' in a bucket! ASK! I've said before in other times that one of the biggest lessons I've learned from my son about God is that He, as our Father, just wants to visit with us. To know what we think, feel, and desire... to hear it from US. To hear our voices cry out to Him in excitement and in fear, in joy and in hopelessness, in desperation and in times of plenty. Instead of praying to survive, I'm going to start praying for God to help me know and enjoy my children... especially the one who doesn't communicate so much. So if you'll allow me a little poetic liscence...
Psalm 139:1-10 (ESV... with Mama paraphrasing)
1O LORD, you have searched Ryan and know him!
2You know when he sits down and when he rises up;
you discern his thoughts from afar.
3You search out Ryan's path and his lying down
and are acquainted with all his ways.
4Even before a word is on Ryan's tongue,
behold, O LORD, you know it altogether.
5You hem Ryan in, behind and before,
and lay your hand upon him.
6Such knowledge is too wonderful for me;
it is high; I cannot attain it.
7Where shall Ryan go from your Spirit?
Or where shall he flee from your presence?
8 If Ryan ascends to heaven, you are there!
If he makes his bed in Sheol, you are there!
9If Ryan takes the wings of the morning
and dwells in the uttermost parts of the sea,
10even there your hand shall lead him,
and your right hand shall hold him.
God made Ryan and knows him far better than I do. He was there that rainy night in Denton, and he's here with us every day. He's with Ryan at school, on the playground, and in Sunday school. In ways I cannot, He can comfort Ryan, Richie, Maelynn... and me. Last night as I was surfing around on the various sites I visit, I found a link to this song. It's by Sara Groves, and I looked it up on Grooveshark (click and you can listen free) and sat and listened over and over as the tears fell because it hits home so accurately. It's Going to Be Alright... and it really is. Maybe it won't always feel that way. I can assure you it won't feel that way. There will be rough times, but I'll keep doing my best, seeking the Lord's help, and it's going to be alright. Not just for me... but for you, too, in whatever it is that I can't understand.
"It's Going to Be Alright"
By Sara Groves and Gordon Kennedy
It's going to be alright
It's going to be alright
I can tell by your eyes that you're not getting any sleep
And you try to rise above it, but feel you're sinking in too deep
Oh, oh I believe, I believe that
It's going to be alright
It's going to be alright
I believe you'll outlive this pain in you heart
And you'll gain such a strength from what is tearing you apart
Oh, oh I believe I believe that
It's going to be alright
It's going to be alright
When some time has past us, and the story if retold
It will mirror the strength and the courage in your soul
Oh, oh, I believe I believe,
I believe
I believe
I did not come here to offer you cliché's
I will not pretend to know of all your pain
Just when you cannot, then I will hold out faith, for you
It's going to be alright
It's going to be alright
Thursday, April 21, 2011
Rising and the Red Button Incident
I almost didn't get out of bed this morning. Really. But this time, it was because I had an indescribably beautiful baby girl snuggled up to me in her pink doggie pj's. As the morning light seeped in through the window sheers and graced her round, porcelain face and made her golden brown hair shine, I watched her rest completely still except for the gentle rise and fall with each breath and the nod of her pink binky every now and then. What an amazing blessing... a gift... our children are. Can there be a more fabulous sound than the slaps of tiny bare feet on the kitchen floor? How awe-inspiring and humbling to think that we are chosen to give them a home; to make sure they feel loved and learn to feel and share the love of Christ! Then I thought about the stark contrast between our two younger and our oldest.
When Ryan was a baby, he was the only one, and we would sleep all snuggled to each other after Daddy left for school. The older I get, the more I cherish the things that were normal baby things he did. Back in the days when we just loved being parents and couldn't wait to see all he'd do! I had decided our kids would learn to read before they went to pre-k and would learn to read music at the same time. They'd start piano at an early age, and would basically walk into the school the first day of pre-k with everyone telling them how amazing they were... and of course, everyone would talk about how smart and well-adjusted the Senzig kids were! Oh, and I was going to be the Martha Stewart of room moms. Look out. Equipped with more Tupperware than is ever neccessary, I was gonna rock their little Elmo socks off with my baking skills. Yep, I'd been waiting my whole life for this! Ever since I was a little girl "raising" my Cabbage Patch Kid (Annabelle, and yes she DOES live in Mae's room now) I couldn't wait. It's not a popular thing to say in this day and age, but I wanted to be Betty Crocker, Donna Reed, and June Cleaver all rolled into one and stuck in jeans and a t-shirt.
But what I didn't know was that the t-shirt would have a giant puzzle piece on it for Autism Awareness. All that effort I was going to pour into having our children be exceptionally gifted and super-overachieverly prepared was going to go into just getting Ryan to do the basics. I didn't know I was going to beg him at nearly six years old to just please go to the bathroom without screaming and crying. Just walk, please. I expected to train him to sit in church at an early age just like I did my sister Bree, and be able to keep him quiet with the evil eye from the choir loft just like Bree. And yes, that really did work... she was awesome! Instead, I'm doing good to keep him semi-quiet and confined to the pew-area we're occupying. I also had no idea that the job I had done professionally would turn out to be exponentially easier for me than figuring out how to be an autistic child's mother. Yes, folks... I am far more comfortable with my ability to handle 150 sixth graders with musical instruments than I am in my ability to take my son to the grocery store. There, I said it. It's inexplicably difficult to admit it. I LOVE my son, don't get me wrong. It's just that walking through the grocery store with a nearly six year old slapping his ears, beating his chest, and now hitting me (that's new, by the way) and screaming like some kind of tribal man off to war hits this people-pleaser where it hurts.
The contrast is amazing. Richie is now beginning to help his brother. He leads Ryan back into the house when it's time to come in from the backyard, pleading in his sweet Richie voice, "Come inna howse, Yyan!" He reminds Ryan of the rules, especially with the piano. "Fingahs onwey, no feets, Yyan," Richie reminds as he hears (even from the other room) Ryan holding the sustain pedal as he experiments with intervals. Richie's sweet heart is such an encouragement to me. Ryan is his hero. Richie has no precluded ideas about behavior or culture. He just loves his big brother. Richie even used to try to stim, or handflap, like Ryan. So precious, that unadultered love and trust. We are getting to the point where, when Richie copies some of Ryan's autistic behaviors, we have to explain that brother does that because he doesn't know better, but Richie does. This is true, and that's just one of the parts that is hard to swallow.
Other than the diagnosis itself, and really more than that, is the death to my preconceived ideas about all of life. How my house would be kept, how I'd teach my children everything, how we keep our marriage healthy all has to be relearned in a way that fits us. Yes, that sounds familiar to most couples, I bet. The hardest part for me is realizing that I do have to draw lines, and more often than I wanted, the lines will be drawn in a way that the answer is "no, I can't do that."
Can't.
Ugh.
Now, yes, I physically CAN walk out this door every day and do whatever. I can force my will and do whatever I think is right... to a point. I could do a lot of things, but the hard part is listening and hearing the difference in "good" and "best". Last week I got a lesson in that. I had been thinking after a few weeks of these sweet neighbor boys watching Richie for me while I take Ryan to therapy with Mae in tow that I really could do this on my own. They were out on vacation for a while, and I found myself carting all three kids by myself to Baylor. Everyone got out of the van just fine; we made it into the building just fine. Richie and Mae let me sit and read books to them the whole time, and we spoke with Miss Stacy, then left. On the way out, I learned my lesson. See, there are all these emergency call boxes all over college campuses. They're equipped with these big, round, bright red, irresistibly pushable buttons- just at Ryan-eye-level. Usually, I can keep a hand on Ryan and a hand on the stroller. This time, Ryan led Richie away and as I was getting Richie, he bolted straight for that button and before I knew it, that blue light on the top was flashing and I was telling (while half-running away and trying to not say any unsavory words) the campus cop who calls out loud so loud that half of McClennan county can hear that yes, all is well. As I walked away, once the embarrassment subsided and everyone was safely buckled into the van, it hit me how much I do need those boys, and what a God-send they truly are.
We are at a crossroads (thanks, Kay Arthur) in our lives right now... and really, several times a day. We can whine, be sad, be angry and resentful and let that grow into bitterness, or we can ask the question God asked Jonah.
"Do you do well to be angry?"
Well, do you? How's that workin' for ya? For me, not so good. I'm not denying that there is a grieving process for every hard thing that happens in life. But I am saying that at some point, we have to realize that the time we're spending bemoaning our trials is time SPENT. Time we could have been stroking those golden-brown curls. Time spent letting Richie kiss-hug-kiss-hug all over my face till he giggles. Time spent laughing when Ryan passes the emergency box and says "you LOVE to push buttons" every time since the red button incident. Yes, I get angry. At least once a day I look at God and say, "Are You SERIOUS?!" Yep, I have plenty of fodder for those, as I'm sure you do. Just last weekend we spent part of a gift to give back and participate in the Waco Walk for Autism. After walking one lap around the Fountain Mall, we found Ryan's beloved Miss Stacy, who had her iphone out, and yep, that was it for Ryan. Twenty minutes to get the phone away from him plus forty-five in a meltdown equals the whole of our walk experience. Ah, well. Just today, we had to have a new tire on the van. No one in town had one, so I bit the bullet and took Ryan with me to the Goodyear store in Waco. Yep, meltdown city. First I had to keep him from running out of the store and into traffic. Then spent the rest of the time calming him down, because man, mama... you're mean not letting your child play in traffic.
Just like anyone else, after all that, I was so tired and really wanted to crawl under a rock, even just to get some sleep. But instead, I tried to remember in each instance... there is always a reason. I may never know the reason or reasons behind anything that happens, but I trust that the same God who loves me enough to send His only precious Son to die a horrendous (at best) death so that I could experience His love and peace has nothing but my best interest at heart. The same God who knew me before the foundations of the earth has a plan for my sweet children!!!
So I am thankful not for autism, not for frustration and anger, not for tears and emarrassing situations, but for the precious, innocent smiles and snuggles I share with the special children with whom God has gifted me. I am the most thankful for the Lord who died so that the grace and mercy and love and peace of God can flow through me, that I may glorify Him in every meltdown and every scream and hit, as well as every hug, giggle, and victory! I am thankful for the discernment and wisdom that the Holy spirit and Word of God give me! Without the death, burial and resurrection of Christ I would not be able to rise in the morning.
Instead, I'm unable to rise because I don't want the sweet moment to end.
CHRIST HAS DIED!
CHRIST HAS RISEN!
CHRIST WILL COME AGAIN!
When Ryan was a baby, he was the only one, and we would sleep all snuggled to each other after Daddy left for school. The older I get, the more I cherish the things that were normal baby things he did. Back in the days when we just loved being parents and couldn't wait to see all he'd do! I had decided our kids would learn to read before they went to pre-k and would learn to read music at the same time. They'd start piano at an early age, and would basically walk into the school the first day of pre-k with everyone telling them how amazing they were... and of course, everyone would talk about how smart and well-adjusted the Senzig kids were! Oh, and I was going to be the Martha Stewart of room moms. Look out. Equipped with more Tupperware than is ever neccessary, I was gonna rock their little Elmo socks off with my baking skills. Yep, I'd been waiting my whole life for this! Ever since I was a little girl "raising" my Cabbage Patch Kid (Annabelle, and yes she DOES live in Mae's room now) I couldn't wait. It's not a popular thing to say in this day and age, but I wanted to be Betty Crocker, Donna Reed, and June Cleaver all rolled into one and stuck in jeans and a t-shirt.
But what I didn't know was that the t-shirt would have a giant puzzle piece on it for Autism Awareness. All that effort I was going to pour into having our children be exceptionally gifted and super-overachieverly prepared was going to go into just getting Ryan to do the basics. I didn't know I was going to beg him at nearly six years old to just please go to the bathroom without screaming and crying. Just walk, please. I expected to train him to sit in church at an early age just like I did my sister Bree, and be able to keep him quiet with the evil eye from the choir loft just like Bree. And yes, that really did work... she was awesome! Instead, I'm doing good to keep him semi-quiet and confined to the pew-area we're occupying. I also had no idea that the job I had done professionally would turn out to be exponentially easier for me than figuring out how to be an autistic child's mother. Yes, folks... I am far more comfortable with my ability to handle 150 sixth graders with musical instruments than I am in my ability to take my son to the grocery store. There, I said it. It's inexplicably difficult to admit it. I LOVE my son, don't get me wrong. It's just that walking through the grocery store with a nearly six year old slapping his ears, beating his chest, and now hitting me (that's new, by the way) and screaming like some kind of tribal man off to war hits this people-pleaser where it hurts.
The contrast is amazing. Richie is now beginning to help his brother. He leads Ryan back into the house when it's time to come in from the backyard, pleading in his sweet Richie voice, "Come inna howse, Yyan!" He reminds Ryan of the rules, especially with the piano. "Fingahs onwey, no feets, Yyan," Richie reminds as he hears (even from the other room) Ryan holding the sustain pedal as he experiments with intervals. Richie's sweet heart is such an encouragement to me. Ryan is his hero. Richie has no precluded ideas about behavior or culture. He just loves his big brother. Richie even used to try to stim, or handflap, like Ryan. So precious, that unadultered love and trust. We are getting to the point where, when Richie copies some of Ryan's autistic behaviors, we have to explain that brother does that because he doesn't know better, but Richie does. This is true, and that's just one of the parts that is hard to swallow.
Other than the diagnosis itself, and really more than that, is the death to my preconceived ideas about all of life. How my house would be kept, how I'd teach my children everything, how we keep our marriage healthy all has to be relearned in a way that fits us. Yes, that sounds familiar to most couples, I bet. The hardest part for me is realizing that I do have to draw lines, and more often than I wanted, the lines will be drawn in a way that the answer is "no, I can't do that."
Can't.
Ugh.
Now, yes, I physically CAN walk out this door every day and do whatever. I can force my will and do whatever I think is right... to a point. I could do a lot of things, but the hard part is listening and hearing the difference in "good" and "best". Last week I got a lesson in that. I had been thinking after a few weeks of these sweet neighbor boys watching Richie for me while I take Ryan to therapy with Mae in tow that I really could do this on my own. They were out on vacation for a while, and I found myself carting all three kids by myself to Baylor. Everyone got out of the van just fine; we made it into the building just fine. Richie and Mae let me sit and read books to them the whole time, and we spoke with Miss Stacy, then left. On the way out, I learned my lesson. See, there are all these emergency call boxes all over college campuses. They're equipped with these big, round, bright red, irresistibly pushable buttons- just at Ryan-eye-level. Usually, I can keep a hand on Ryan and a hand on the stroller. This time, Ryan led Richie away and as I was getting Richie, he bolted straight for that button and before I knew it, that blue light on the top was flashing and I was telling (while half-running away and trying to not say any unsavory words) the campus cop who calls out loud so loud that half of McClennan county can hear that yes, all is well. As I walked away, once the embarrassment subsided and everyone was safely buckled into the van, it hit me how much I do need those boys, and what a God-send they truly are.
We are at a crossroads (thanks, Kay Arthur) in our lives right now... and really, several times a day. We can whine, be sad, be angry and resentful and let that grow into bitterness, or we can ask the question God asked Jonah.
"Do you do well to be angry?"
Well, do you? How's that workin' for ya? For me, not so good. I'm not denying that there is a grieving process for every hard thing that happens in life. But I am saying that at some point, we have to realize that the time we're spending bemoaning our trials is time SPENT. Time we could have been stroking those golden-brown curls. Time spent letting Richie kiss-hug-kiss-hug all over my face till he giggles. Time spent laughing when Ryan passes the emergency box and says "you LOVE to push buttons" every time since the red button incident. Yes, I get angry. At least once a day I look at God and say, "Are You SERIOUS?!" Yep, I have plenty of fodder for those, as I'm sure you do. Just last weekend we spent part of a gift to give back and participate in the Waco Walk for Autism. After walking one lap around the Fountain Mall, we found Ryan's beloved Miss Stacy, who had her iphone out, and yep, that was it for Ryan. Twenty minutes to get the phone away from him plus forty-five in a meltdown equals the whole of our walk experience. Ah, well. Just today, we had to have a new tire on the van. No one in town had one, so I bit the bullet and took Ryan with me to the Goodyear store in Waco. Yep, meltdown city. First I had to keep him from running out of the store and into traffic. Then spent the rest of the time calming him down, because man, mama... you're mean not letting your child play in traffic.
Just like anyone else, after all that, I was so tired and really wanted to crawl under a rock, even just to get some sleep. But instead, I tried to remember in each instance... there is always a reason. I may never know the reason or reasons behind anything that happens, but I trust that the same God who loves me enough to send His only precious Son to die a horrendous (at best) death so that I could experience His love and peace has nothing but my best interest at heart. The same God who knew me before the foundations of the earth has a plan for my sweet children!!!
So I am thankful not for autism, not for frustration and anger, not for tears and emarrassing situations, but for the precious, innocent smiles and snuggles I share with the special children with whom God has gifted me. I am the most thankful for the Lord who died so that the grace and mercy and love and peace of God can flow through me, that I may glorify Him in every meltdown and every scream and hit, as well as every hug, giggle, and victory! I am thankful for the discernment and wisdom that the Holy spirit and Word of God give me! Without the death, burial and resurrection of Christ I would not be able to rise in the morning.
Instead, I'm unable to rise because I don't want the sweet moment to end.
CHRIST HAS DIED!
CHRIST HAS RISEN!
CHRIST WILL COME AGAIN!
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