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!!!
Thursday, July 21, 2011
Monday, July 18, 2011
Resolve... it's not just for carpet.
Lately our house has been pretty screamy. Ryan loves to watch movies, certain ones... and he has an astouding memory. He has been doing more vocalizing lately! This is fabulous, really. The fact that he's interested in saying words is amazing. He has even begun, when we offer him something and he doesn't want it, to say "No grilled cheese (or go home, or whatever)." We are thrilled about this! But it seems like for every great thing, autism brings another equally gut-wrenching thing.
Maelynn and Richie adore their big brother. Whatever he does is golden. Stimming, fits, even if he just got in trouble for something and the littles heard the whole thing, two seconds later they have to try it too. Everything from jumping on the couch to self-injury. It's all cool if brother does it. So you can imagine how fun it is in our house when Ryan screams along with characters in a show, or even in a book on the ipad. Immediately, the littles follow suit, not to be outdone. My husband has a picture on his phone of a rare night when Ryan fell asleep at the table. Richie laid his head on the table and pretended to be asleep, too. Sometimes, Ryan thinks this is hilarious! The most fun was when, after we blessed our food, Ryan said "aaaaaay-men!" and Richie, being Richie, repeated. They did this several times, each time a little louder. So very cute and sweet! We all laughed and laughed!
Then there are the times when it's more difficult to laugh. The times when he is so beside himself, frustrated, angry, and confused that there is no calming him down. The boys' birthdays are just three days apart. When they get birthday money, we've begun letting them shop for their own stuff somewhat. We guide them to avoid letting them do something like spending all their money on every ball they see (that's Richie's schtick). The problem with this is once Ryan has done something he likes to do, he will ask... no, demand... to do it every day, all the time. The most common ones are "ride the people train", "ride the elevator", "Pack your swimsuit", and "go see Miss Staci". Sometimes he'll ask once, I'll explain, and the explanation is accepted. More often he'll ask for the same things I COULD SWEAR fifty times an hour. Say no? He screams and beats his chest, legs or head. Or the wall, table, whatever.
Let me make this clear and fast, since not all of you know us... we do NOT give in to screaming, crying, or demanding children... or anyone else for that matter. This can mean hours of ask-explain-fit. Ask-explain-fit. Repeat ad nauseum. At times the fits go into full meltdown. Running around, screaming, hitting himself, anything else in sight, crying, gutterally screaming until he's gagging. There are almost always little bruises on his chest, which breaks my heart.
When Ryan asked last week to go to the store, we were fine with that. We were on our way that direction anyway. So every time he asked from the back of the van, yes, buddy... we're going. Hang on. Then we get there, and he was fine in the cart with his brother. We needed paint for his room. By this time, I couldn't think because of the wiggling and fits for "look at toys". Eric and I tried to reason to no avail, telling him that we were picking colors for his room, tried to let him help... nothing. The people at the paint counter were awesome, just talking to us even though you could tell one was pretty speechlessly uncomfortable. We picked a great Thomas color, and after the thrill of watching the paint mixer, it was time to shop for some other things. The fit continued over toys until he was indescribably scream-demanding to look at toys, then vaccuum cleaners, then toys again, then fans. Trying to think and losing the battle, I suggested Eric take Ryan to potty with him... after all, Ryan might have to go too. Five minutes of silence. Sweet.
After they got back, the fits only escalated to the point where, in the much too long and slow checkout line, all I could do was keep him from hitting himself. It was noisy, but not embarrassing.
It was beyond embarrassing. It was painful.
It's hard enough to watch your child beat himself silly and scream till he gags. It's hard enough to wait in line, knowing you have to have the things in your basket. But having people obviously stop to stare? Just to stare? Just to stare and shake their heads in, I don't know, pity? Anger? Pride that their kids never did that? The surety that they could do better?
I know the fit was over the top. I know I could have left the basket. I know, I know. But the thing is, if I just left all the time, I'd go the whole summer without groceries. Or Ryan would never enter a store. Or a restaurant. I've encountered people recently who I'm sure would rather not be bothered by the noise of autism. To tell the truth, I'd rather not be bothered by autism either! I'd love for Ryan to have the ability to effectively communicate everything he needs, process everything around him without the need for sensory input hitting provides, and for him to act just like his brother and sister.
But that isn't Ryan. At least not yet.
It might be him someday, and we will continue to work hard to help him understand the world. If we don't try, if we don't endure the stares and the glares, the loud, cowardly not-to-our-face-yet-loud-enough-to-hear comments (thanks, dude in the children's restaurant this weekend), we would not be helping Ryan at all. We do have to remember who we are when these things happen... called to be slow to anger, slow to speak. We have to recognize the openings to share and educate, but never at the risk of doing more harm than good. We have to realize, also, that while it would be great if everyone realized that it's not their place to judge our parenting, that's not going to happen. We have to remember that by the grace of God, that could be us being insensitive... and it probably has been and we didn't even know it.
I would love to be able to say that I smiled and stayed perfectly calm and hopeful through the store ordeal and the restaurant ordeal, but I'd be lying. I nearly glared a hole in the guy's head on his way out of the restaurant. I bawled the whole way back to town from the store. There are days I feel somewhat trapped in the house. It takes an indescribable amount of energy to muster the resolve required to shove away the fear that something awful will happen or be said.
Yesterday we almost lost this battle. On the way into my inlaws' church, we had another one of these fits, this time over trains. Church=trains to Ryan, and that's something we have to address. But it's hard to address anything when you can't get in the building for the meltdown. We almost went home. We didn't. As I sat there with Ryan fiddling with his "red" (a pocket etch-a-sketch) nestled between Eric and I, my mind wandered to how many parents of ASD kids might be in the same room as I was. I knew of one other couple, maybe two with kids on the spectrum in the church. Out of the hundreds of people before me, maybe four people got it, not counting our family.
I wondered how many there were outside the doors. I wondered how many people just couldn't muster the resolve to endure being so very different. Let's face it. A six year old boy screaming and beating his chest at random is not a terribly welcome addition in any place where a group is gathered together to do anything remotely quiet or organized. The week before, for the first time, I lost such resolve myself. For the first time, I just didn't have what it took. I hope it never happens again, but that's just another promise I can't make.
The fits are hard wherever we are. They leave me thinking, as the tears roll and in between sobs on the way home, about so many things. Wishing I could quickly explain that he can't help it in a way that is meaningful... wishing I could change the world and make it a place where people trust each other, and understand that trust has to be issued to each other more generously than judgement. The funny thing about that scale is the judgment stings more than the sensitivity and trust heal. So there has to be more trust, more sensitivity than stares, ugly comments, or unsolicited advice. Do I think this will happen? I wish it would.
I wish that would happen for not just my family, but for all the families linked to all the other blogs I read, all the mothers and fathers and people with ASD who need so desperately to be loved not in a conventional way, but in a way that is tangible to them. I read of so many broken hearts, so many lives in which survival mode is the norm. For all those families, I pray for peace and comfort.
For the parents who still wait for the first word... for 18 or 20 years.
For the parents who get only three or four hours of sleep.
For the parents who see beaches and pools not as relaxation, but as drowning hazards.
For the children who are covered in self-inflicted bruises.
For the parents who know the pain of not feeling... or not being... welcome.
For all of you who deal with the seizures that Ryan's been spared.
For all of you who know the pain of the guilt of wondering if you're doing enough.
For all of you who are still potty training at 5, 6, 7, 8, 9...
For all of you who choke up when you see something specially made to benefit your child's need or just to make your child smile.
For all of you who know the immediate sick feeling when you haven't seen your child for even a second.
For all of you who know the kick in the gut of having everything you offer, every question you ask answered with a scream, sometimes for days on end.
For all of you who know that those of us who experience the deepest pain cannot be pitied; for we also experience the greatest joy.
For all of us, I pray we will all find peace by casting all our anxieties on Him, because He cares for us. (1Peter 5:7 ESV)
And I have to tell you... if we hadn't gone Sunday, we would have missed the encouragement of one person who knows an ASD kid, and another who didn't, but just got a kick out of watching him, feet nearly in my face and all.
Those friendly, accepting faces, though they didn't solve any of our problems, were gifts of the Lord. To be met with smiles and looks in the eye instead of sideways glares was simply heavenly. To be enjoyed and not tolerated was blissful.
Thanks be to God!!!
Maelynn and Richie adore their big brother. Whatever he does is golden. Stimming, fits, even if he just got in trouble for something and the littles heard the whole thing, two seconds later they have to try it too. Everything from jumping on the couch to self-injury. It's all cool if brother does it. So you can imagine how fun it is in our house when Ryan screams along with characters in a show, or even in a book on the ipad. Immediately, the littles follow suit, not to be outdone. My husband has a picture on his phone of a rare night when Ryan fell asleep at the table. Richie laid his head on the table and pretended to be asleep, too. Sometimes, Ryan thinks this is hilarious! The most fun was when, after we blessed our food, Ryan said "aaaaaay-men!" and Richie, being Richie, repeated. They did this several times, each time a little louder. So very cute and sweet! We all laughed and laughed!
Then there are the times when it's more difficult to laugh. The times when he is so beside himself, frustrated, angry, and confused that there is no calming him down. The boys' birthdays are just three days apart. When they get birthday money, we've begun letting them shop for their own stuff somewhat. We guide them to avoid letting them do something like spending all their money on every ball they see (that's Richie's schtick). The problem with this is once Ryan has done something he likes to do, he will ask... no, demand... to do it every day, all the time. The most common ones are "ride the people train", "ride the elevator", "Pack your swimsuit", and "go see Miss Staci". Sometimes he'll ask once, I'll explain, and the explanation is accepted. More often he'll ask for the same things I COULD SWEAR fifty times an hour. Say no? He screams and beats his chest, legs or head. Or the wall, table, whatever.
Let me make this clear and fast, since not all of you know us... we do NOT give in to screaming, crying, or demanding children... or anyone else for that matter. This can mean hours of ask-explain-fit. Ask-explain-fit. Repeat ad nauseum. At times the fits go into full meltdown. Running around, screaming, hitting himself, anything else in sight, crying, gutterally screaming until he's gagging. There are almost always little bruises on his chest, which breaks my heart.
When Ryan asked last week to go to the store, we were fine with that. We were on our way that direction anyway. So every time he asked from the back of the van, yes, buddy... we're going. Hang on. Then we get there, and he was fine in the cart with his brother. We needed paint for his room. By this time, I couldn't think because of the wiggling and fits for "look at toys". Eric and I tried to reason to no avail, telling him that we were picking colors for his room, tried to let him help... nothing. The people at the paint counter were awesome, just talking to us even though you could tell one was pretty speechlessly uncomfortable. We picked a great Thomas color, and after the thrill of watching the paint mixer, it was time to shop for some other things. The fit continued over toys until he was indescribably scream-demanding to look at toys, then vaccuum cleaners, then toys again, then fans. Trying to think and losing the battle, I suggested Eric take Ryan to potty with him... after all, Ryan might have to go too. Five minutes of silence. Sweet.
After they got back, the fits only escalated to the point where, in the much too long and slow checkout line, all I could do was keep him from hitting himself. It was noisy, but not embarrassing.
It was beyond embarrassing. It was painful.
It's hard enough to watch your child beat himself silly and scream till he gags. It's hard enough to wait in line, knowing you have to have the things in your basket. But having people obviously stop to stare? Just to stare? Just to stare and shake their heads in, I don't know, pity? Anger? Pride that their kids never did that? The surety that they could do better?
I know the fit was over the top. I know I could have left the basket. I know, I know. But the thing is, if I just left all the time, I'd go the whole summer without groceries. Or Ryan would never enter a store. Or a restaurant. I've encountered people recently who I'm sure would rather not be bothered by the noise of autism. To tell the truth, I'd rather not be bothered by autism either! I'd love for Ryan to have the ability to effectively communicate everything he needs, process everything around him without the need for sensory input hitting provides, and for him to act just like his brother and sister.
But that isn't Ryan. At least not yet.
It might be him someday, and we will continue to work hard to help him understand the world. If we don't try, if we don't endure the stares and the glares, the loud, cowardly not-to-our-face-yet-loud-enough-to-hear comments (thanks, dude in the children's restaurant this weekend), we would not be helping Ryan at all. We do have to remember who we are when these things happen... called to be slow to anger, slow to speak. We have to recognize the openings to share and educate, but never at the risk of doing more harm than good. We have to realize, also, that while it would be great if everyone realized that it's not their place to judge our parenting, that's not going to happen. We have to remember that by the grace of God, that could be us being insensitive... and it probably has been and we didn't even know it.
I would love to be able to say that I smiled and stayed perfectly calm and hopeful through the store ordeal and the restaurant ordeal, but I'd be lying. I nearly glared a hole in the guy's head on his way out of the restaurant. I bawled the whole way back to town from the store. There are days I feel somewhat trapped in the house. It takes an indescribable amount of energy to muster the resolve required to shove away the fear that something awful will happen or be said.
Yesterday we almost lost this battle. On the way into my inlaws' church, we had another one of these fits, this time over trains. Church=trains to Ryan, and that's something we have to address. But it's hard to address anything when you can't get in the building for the meltdown. We almost went home. We didn't. As I sat there with Ryan fiddling with his "red" (a pocket etch-a-sketch) nestled between Eric and I, my mind wandered to how many parents of ASD kids might be in the same room as I was. I knew of one other couple, maybe two with kids on the spectrum in the church. Out of the hundreds of people before me, maybe four people got it, not counting our family.
I wondered how many there were outside the doors. I wondered how many people just couldn't muster the resolve to endure being so very different. Let's face it. A six year old boy screaming and beating his chest at random is not a terribly welcome addition in any place where a group is gathered together to do anything remotely quiet or organized. The week before, for the first time, I lost such resolve myself. For the first time, I just didn't have what it took. I hope it never happens again, but that's just another promise I can't make.
The fits are hard wherever we are. They leave me thinking, as the tears roll and in between sobs on the way home, about so many things. Wishing I could quickly explain that he can't help it in a way that is meaningful... wishing I could change the world and make it a place where people trust each other, and understand that trust has to be issued to each other more generously than judgement. The funny thing about that scale is the judgment stings more than the sensitivity and trust heal. So there has to be more trust, more sensitivity than stares, ugly comments, or unsolicited advice. Do I think this will happen? I wish it would.
I wish that would happen for not just my family, but for all the families linked to all the other blogs I read, all the mothers and fathers and people with ASD who need so desperately to be loved not in a conventional way, but in a way that is tangible to them. I read of so many broken hearts, so many lives in which survival mode is the norm. For all those families, I pray for peace and comfort.
For the parents who still wait for the first word... for 18 or 20 years.
For the parents who get only three or four hours of sleep.
For the parents who see beaches and pools not as relaxation, but as drowning hazards.
For the children who are covered in self-inflicted bruises.
For the parents who know the pain of not feeling... or not being... welcome.
For all of you who deal with the seizures that Ryan's been spared.
For all of you who know the pain of the guilt of wondering if you're doing enough.
For all of you who are still potty training at 5, 6, 7, 8, 9...
For all of you who choke up when you see something specially made to benefit your child's need or just to make your child smile.
For all of you who know the immediate sick feeling when you haven't seen your child for even a second.
For all of you who know the kick in the gut of having everything you offer, every question you ask answered with a scream, sometimes for days on end.
For all of you who know that those of us who experience the deepest pain cannot be pitied; for we also experience the greatest joy.
For all of us, I pray we will all find peace by casting all our anxieties on Him, because He cares for us. (1Peter 5:7 ESV)
And I have to tell you... if we hadn't gone Sunday, we would have missed the encouragement of one person who knows an ASD kid, and another who didn't, but just got a kick out of watching him, feet nearly in my face and all.
Those friendly, accepting faces, though they didn't solve any of our problems, were gifts of the Lord. To be met with smiles and looks in the eye instead of sideways glares was simply heavenly. To be enjoyed and not tolerated was blissful.
Thanks be to God!!!
Thursday, July 14, 2011
You know what's funny?
I get a few minutes alone, and it's so quiet that I can't think! Once the noise of silence subsides, I can't stop thinking. So here I am again.
There have been several posts about the "R" word lately in so many other blogs. Somewhere between those posts and dealings with my dementia-riddled Grandad this trip, words like respect and dignity keep pinging around in my head. You go in these places where people have varied amounts of understanding and abilities, sicknesses and capabilities, and start considering putting someone you care for in a place to care for them, and all of a sudden it matters. All of a sudden, the intricacies of someone's personality that we don't even think about can cause major disasters.
This is where Grandad meets Ryan.
I'm not a doctor. I'm not a liscenced anything, save band director in Texas, and that means little with my current occupation. But I am Ryan's Mom, and I am Robert's granddaughter. I've spent time with both of them, and I'm amazed at the similarities between their conditions. One, in so many ways, is a negative of the other. Grandad and Ryan both need routine. They both have (what I call) anchors- things that are not necessarily routine, but are things like foods, people, treats, words, clothes, or objects that help bridge the gap between the known and the unknown. Nanny held Grandad together, if not sheerly by her presence. If we weren't sure, we found out last November. Grandad adored my Nanny from the time they were in high school. He hitchhiked across Oklahoma just to see her. There are so many precious, romantic stories of their courtship in the days before instantaneous communication. His family owned and ran the telephone company in that part of the state, and Grandad still relied on postcards and hitchhiking to stay with Nanny when her family moved from Stilwell to Enid. When he lost her, it seems like he lost himself. I hate to say it, but losing Nanny was like opening a drain for him. So when they had to take him from his home of nearly 40 years to keep him safe, you can imagine what it's been like.
Traveling with Ryan is much the same. We take away all the norms... the house, most of his stuff... and replace it with wherever we're going (which is usually family, but still). Say what you will, family is still important, and this is a priority for us. We try to keep some of the anchors, but that can become complicated quickly. As I mentioned in my last post, we have the God-given blessing of family who love us enough to want us around no matter the meltdowns. We fight for normalcy and novelty at the same time on these trips, but novelty has to come with anchors. We know what Ryan loves, and we have to find something he loves to do wherever we are. Always within the bounds of his (and our) mental and emotional health, and that can be hard. So many land mines. So many ways to torpedo an entire day.
Ryan used to love being at Nanny's. Nestled in the side of a hill overlooking the valley that is Heavener, the best part to me is the driveway. You can lay on the driveway and almost feel like you're flying... I can still feel the warmth of the concrete on my back. In the house, Ryan had the run of the place, except for the usual Ryan-hazards. Back when he was still tiny, cute, and fits weren't as awkward or dangerous, Ryan used to love to sit on Grandad's lap and share a bowl of Frosted Flakes and a banana. I have a pic, but no scanner. It was the cutest thing! Just like he used to do for me, Grandad took all the pens and the penlike screwdriver thingy (I know... so prepared) from his shirt pocket for Ryan snuggle time. They'd "bite for you, bite for me" through two bowls of cereal or so, then Ryan would wiggle out and do something else. But he'd snuggle Grandad more than just about anyone. He never said it, but we knew he loved Grandad. Heck, he doesn't say it about very many people.
But now I know.
I know Ryan loves my Grandad.
It was time to leave Heavener this time, and I was my usual amount of super-sad to leave home since we lost Nanny. Everything is so different. So hard, yet so comforting still to be there. As I dodged the "alarm system" of pooches to load the van, every time I came back in the house, Ryan kept asking for Grandad. "See Grandad" he'd say. I tried to avoid explaining. How do you explain this all to a six year old, much less to one who isn't yet able to express his feelings in ways other than screaming very effectively? But he pressed. "Grandad get home from work?" "Go see Grandad?" "Go to Grandad's house?" It was miraculously easier to explain why he couldn't go to Nanny's house (yes, same place) because "sweetie, it's different up there since Nanny moved in with Jesus." That was a good enough answer for him, by the way.
So I finally decided that we had to take Ryan to see Grandad. The night before when I saw him, he seemed happy and content, calm and happy to be back in Heavener if not in his own home. So in 102-degree weather at its coolest, with a van loaded to the gills with two adults, three kids, and an Australian shepherd, I steered the van to the nursing home, parking in the shade. "I'll just be a minute," I told Eric. "I can't imagine we'll stay too long."
We walked in, and just as if he was waiting for us, there was my Grandad on the couch in the entrance. Ryan walked up and said "Hi Grandad" and Grandad said hi to him. Then after I'd explained to Grandad (who I'm not sure knew who I was) that yes, this is home now, and yes, his daughter is bringing more of his things soon, Ryan stopped exploring and walked over. He sat down, laid his head on Grandad's lap, and whispered, "I love you, Grandad."
I about died.
Grandad didn't hear, so I managed to choke out "He said he loves you, Grandad" determined that my boy's precious words would fall on the correct ears. Grandad smiled, patted Ryan on the back, and said "I love you, too."
After a confused couple of minutes of conversation, I went to deliver (with Ryan) a pillow I brought for Grandad to his room. I also wanted to make sure I knew where it was, because he seemed confused as to where he was supposed to stay. We went back to Grandad and I sat down beside him while Ryan buzzed about the room, scouring the place for every button, spinny-thingy, and door. In between hopping up to check on Ryan or turn the residents' tv back on before they revolted at missing a second of Springer, I asked Grandad if he'd like us to walk him to his room. "Would you please?"
Of course. You only taught me to ride a bike. You only taught me to shake hands firmly, look people in the eye when I'm speaking to them, and that I should be paying attention during sermons. You only acted as the most constant earthly father in my life... yes, sir... I will walk you to your room. We've had our differences, but yes, I will walk you to your room.
So I helped Grandad up, then took Ryan's hand. Can you say polar opposites? Snail's pace, fragile, unstable versus wiry, hyper, wiggly, screamy. Oh dear. Immediately I wonder how this will go.
I was amazed.
Ryan pulled at me with my arm looped through Grandad's gaunt elbow. But not hard. He also loudly proclaimed, "Nobody touch him!" all the way to the room. Over and over. I might be overthinking this, but as Ryan's mom, I felt like he wanted to protect Grandad. Soon as we got to the room, he stopped. Once in the room, I looked around as I helped Grandad get to bed. The frame with several pictures that Mom put in his room struck me. Pictures of me and my kids, pictures of my uncle and aunt and my cousin, pictures of my sister... all paried with black and white pictures of a beautiful blonde woman who once reached into the pocket of his coat, found the ring, and said yes. There was also a young man staring back at me with his dog, Pal. The same young man on a bicycle with his brothers... probably the same one he rode when he filled his pockets with raisins the day a train wrecked in Stilwell, OK. He ate way too many raisins that day and hated them forever! That young boy grew to a man, lived life, loved, worked, and now resides in room 24.
I can't help but remember that connection Ryan has with Grandad. It's almost like they're complete opposites, but are so much the same. I also cannot shake the fact that I am headed, likely, for much the same.
When I'm at Grandad's age, Lord willing, I will be able to say I had the privilege of having three beautiful children, was married to the most wonderful man I could have asked for, and when all that is through, what do I have? As far as possesions, even with a five bedroom brick house on the hill, the only possesions I will be interested in are my velcro tennis shoes and my eyeglasses. Maybe I'll be one of those sweet ladies who lets the beauty college kids practice, turning my hair light purple just in time for Easter. More than anything, at that point, the things I "did" don't matter. My degree? Psscht. Who cares? What really matters is the bricks. The mortar. The seeds. The water.
It's the now. The getting up every day. The smiles, the failing, learning, trying again. The hugs, the laughter, the tears. The days when I wake up to screaming about this or that, be it ipad, "SWIMSUUUUUIT!", Thomas, jelly toast, or drumsticks, the days when it seems like he's getting worse instead of better... those are the days I have trouble. The days it means more when I flatten out in bed, look up, and beg for help. Admit I don't have it. Ask for it. Just get me out of bed, Lord. Give me the patience. Give me peace. Help me.
These times, these frustrating times when we can't seem to go anywhere... and I mean ANYWHERE anymore without so much effort... when it's so exhausting that so often I'd rather just shut the curtains and protect us from the stares and comments... it is soothing to remember that just trying again is a brick. I was calm and patient through that fit... yay! Mortar. I remembered to make Ryan wait, and remembered to praise him for asking in the first place. Seed. Ryan didn't scream when I made him wait. Water.
When I don't manage to lay bricks and mortar... when I forget to plant the seed and pour the water, that's where Christ comes in. I can't lay them all the time. He knows that. He's there to cover that. And that's why I get up. I know I am called to be my childrens' mother. I know God doesn't make mistakes. Therefore, no matter how I *feel* (and the feelings are SO hard), even if going through the motions is all I have for the moment, having the faith to get up and do that much in His name will be blessed.
So in the end, in my room 24, I pray I'll be reminded even if I don't know who they are, by my children, that it's all about getting up every day and living. If I am blessed with remembering, I hope I will have laid enough bricks and mortar, seeds and water that I will have beautiful memories of the people staring at me in the photo frame. And if I'm not blessed with my memory... I know I will have peace.
Thanks be to God!!!
Kingdom Comes
-Sara Groves
When anger fills your heart
When in your pain and hurt
You find the strength to stop
You bless instead of curse
When doubting floods your soul
When all things feel unjust
You open up your heart
You find a way to trust
That's a little stone
That's a little mortar
That's a little seed
That's a little water
In the hearts of the sons and daughters
This kingdom's coming
When fear engulfs your mind
Says you protect your own
You still extend your hand
You open up your home
When sorrow fills your life
When in your grief and pain
You choose again to rise
You choose to bless the name
That's a little stone
That's a little mortar
That's a little seed
That's a little water
In the hearts of the sons and daughters
This kingdom's coming
In the mundane tasks of living
In the pouring out and giving
In the waking up and trying
In the laying down and dying
That's a little stone
That's a little mortar
That's a little seed
That's a little water
In the hearts of the sons and daughters
This kingdom's coming
There have been several posts about the "R" word lately in so many other blogs. Somewhere between those posts and dealings with my dementia-riddled Grandad this trip, words like respect and dignity keep pinging around in my head. You go in these places where people have varied amounts of understanding and abilities, sicknesses and capabilities, and start considering putting someone you care for in a place to care for them, and all of a sudden it matters. All of a sudden, the intricacies of someone's personality that we don't even think about can cause major disasters.
This is where Grandad meets Ryan.
I'm not a doctor. I'm not a liscenced anything, save band director in Texas, and that means little with my current occupation. But I am Ryan's Mom, and I am Robert's granddaughter. I've spent time with both of them, and I'm amazed at the similarities between their conditions. One, in so many ways, is a negative of the other. Grandad and Ryan both need routine. They both have (what I call) anchors- things that are not necessarily routine, but are things like foods, people, treats, words, clothes, or objects that help bridge the gap between the known and the unknown. Nanny held Grandad together, if not sheerly by her presence. If we weren't sure, we found out last November. Grandad adored my Nanny from the time they were in high school. He hitchhiked across Oklahoma just to see her. There are so many precious, romantic stories of their courtship in the days before instantaneous communication. His family owned and ran the telephone company in that part of the state, and Grandad still relied on postcards and hitchhiking to stay with Nanny when her family moved from Stilwell to Enid. When he lost her, it seems like he lost himself. I hate to say it, but losing Nanny was like opening a drain for him. So when they had to take him from his home of nearly 40 years to keep him safe, you can imagine what it's been like.
Traveling with Ryan is much the same. We take away all the norms... the house, most of his stuff... and replace it with wherever we're going (which is usually family, but still). Say what you will, family is still important, and this is a priority for us. We try to keep some of the anchors, but that can become complicated quickly. As I mentioned in my last post, we have the God-given blessing of family who love us enough to want us around no matter the meltdowns. We fight for normalcy and novelty at the same time on these trips, but novelty has to come with anchors. We know what Ryan loves, and we have to find something he loves to do wherever we are. Always within the bounds of his (and our) mental and emotional health, and that can be hard. So many land mines. So many ways to torpedo an entire day.
Ryan used to love being at Nanny's. Nestled in the side of a hill overlooking the valley that is Heavener, the best part to me is the driveway. You can lay on the driveway and almost feel like you're flying... I can still feel the warmth of the concrete on my back. In the house, Ryan had the run of the place, except for the usual Ryan-hazards. Back when he was still tiny, cute, and fits weren't as awkward or dangerous, Ryan used to love to sit on Grandad's lap and share a bowl of Frosted Flakes and a banana. I have a pic, but no scanner. It was the cutest thing! Just like he used to do for me, Grandad took all the pens and the penlike screwdriver thingy (I know... so prepared) from his shirt pocket for Ryan snuggle time. They'd "bite for you, bite for me" through two bowls of cereal or so, then Ryan would wiggle out and do something else. But he'd snuggle Grandad more than just about anyone. He never said it, but we knew he loved Grandad. Heck, he doesn't say it about very many people.
But now I know.
I know Ryan loves my Grandad.
It was time to leave Heavener this time, and I was my usual amount of super-sad to leave home since we lost Nanny. Everything is so different. So hard, yet so comforting still to be there. As I dodged the "alarm system" of pooches to load the van, every time I came back in the house, Ryan kept asking for Grandad. "See Grandad" he'd say. I tried to avoid explaining. How do you explain this all to a six year old, much less to one who isn't yet able to express his feelings in ways other than screaming very effectively? But he pressed. "Grandad get home from work?" "Go see Grandad?" "Go to Grandad's house?" It was miraculously easier to explain why he couldn't go to Nanny's house (yes, same place) because "sweetie, it's different up there since Nanny moved in with Jesus." That was a good enough answer for him, by the way.
So I finally decided that we had to take Ryan to see Grandad. The night before when I saw him, he seemed happy and content, calm and happy to be back in Heavener if not in his own home. So in 102-degree weather at its coolest, with a van loaded to the gills with two adults, three kids, and an Australian shepherd, I steered the van to the nursing home, parking in the shade. "I'll just be a minute," I told Eric. "I can't imagine we'll stay too long."
We walked in, and just as if he was waiting for us, there was my Grandad on the couch in the entrance. Ryan walked up and said "Hi Grandad" and Grandad said hi to him. Then after I'd explained to Grandad (who I'm not sure knew who I was) that yes, this is home now, and yes, his daughter is bringing more of his things soon, Ryan stopped exploring and walked over. He sat down, laid his head on Grandad's lap, and whispered, "I love you, Grandad."
I about died.
Grandad didn't hear, so I managed to choke out "He said he loves you, Grandad" determined that my boy's precious words would fall on the correct ears. Grandad smiled, patted Ryan on the back, and said "I love you, too."
After a confused couple of minutes of conversation, I went to deliver (with Ryan) a pillow I brought for Grandad to his room. I also wanted to make sure I knew where it was, because he seemed confused as to where he was supposed to stay. We went back to Grandad and I sat down beside him while Ryan buzzed about the room, scouring the place for every button, spinny-thingy, and door. In between hopping up to check on Ryan or turn the residents' tv back on before they revolted at missing a second of Springer, I asked Grandad if he'd like us to walk him to his room. "Would you please?"
Of course. You only taught me to ride a bike. You only taught me to shake hands firmly, look people in the eye when I'm speaking to them, and that I should be paying attention during sermons. You only acted as the most constant earthly father in my life... yes, sir... I will walk you to your room. We've had our differences, but yes, I will walk you to your room.
So I helped Grandad up, then took Ryan's hand. Can you say polar opposites? Snail's pace, fragile, unstable versus wiry, hyper, wiggly, screamy. Oh dear. Immediately I wonder how this will go.
I was amazed.
Ryan pulled at me with my arm looped through Grandad's gaunt elbow. But not hard. He also loudly proclaimed, "Nobody touch him!" all the way to the room. Over and over. I might be overthinking this, but as Ryan's mom, I felt like he wanted to protect Grandad. Soon as we got to the room, he stopped. Once in the room, I looked around as I helped Grandad get to bed. The frame with several pictures that Mom put in his room struck me. Pictures of me and my kids, pictures of my uncle and aunt and my cousin, pictures of my sister... all paried with black and white pictures of a beautiful blonde woman who once reached into the pocket of his coat, found the ring, and said yes. There was also a young man staring back at me with his dog, Pal. The same young man on a bicycle with his brothers... probably the same one he rode when he filled his pockets with raisins the day a train wrecked in Stilwell, OK. He ate way too many raisins that day and hated them forever! That young boy grew to a man, lived life, loved, worked, and now resides in room 24.
I can't help but remember that connection Ryan has with Grandad. It's almost like they're complete opposites, but are so much the same. I also cannot shake the fact that I am headed, likely, for much the same.
When I'm at Grandad's age, Lord willing, I will be able to say I had the privilege of having three beautiful children, was married to the most wonderful man I could have asked for, and when all that is through, what do I have? As far as possesions, even with a five bedroom brick house on the hill, the only possesions I will be interested in are my velcro tennis shoes and my eyeglasses. Maybe I'll be one of those sweet ladies who lets the beauty college kids practice, turning my hair light purple just in time for Easter. More than anything, at that point, the things I "did" don't matter. My degree? Psscht. Who cares? What really matters is the bricks. The mortar. The seeds. The water.
It's the now. The getting up every day. The smiles, the failing, learning, trying again. The hugs, the laughter, the tears. The days when I wake up to screaming about this or that, be it ipad, "SWIMSUUUUUIT!", Thomas, jelly toast, or drumsticks, the days when it seems like he's getting worse instead of better... those are the days I have trouble. The days it means more when I flatten out in bed, look up, and beg for help. Admit I don't have it. Ask for it. Just get me out of bed, Lord. Give me the patience. Give me peace. Help me.
These times, these frustrating times when we can't seem to go anywhere... and I mean ANYWHERE anymore without so much effort... when it's so exhausting that so often I'd rather just shut the curtains and protect us from the stares and comments... it is soothing to remember that just trying again is a brick. I was calm and patient through that fit... yay! Mortar. I remembered to make Ryan wait, and remembered to praise him for asking in the first place. Seed. Ryan didn't scream when I made him wait. Water.
When I don't manage to lay bricks and mortar... when I forget to plant the seed and pour the water, that's where Christ comes in. I can't lay them all the time. He knows that. He's there to cover that. And that's why I get up. I know I am called to be my childrens' mother. I know God doesn't make mistakes. Therefore, no matter how I *feel* (and the feelings are SO hard), even if going through the motions is all I have for the moment, having the faith to get up and do that much in His name will be blessed.
So in the end, in my room 24, I pray I'll be reminded even if I don't know who they are, by my children, that it's all about getting up every day and living. If I am blessed with remembering, I hope I will have laid enough bricks and mortar, seeds and water that I will have beautiful memories of the people staring at me in the photo frame. And if I'm not blessed with my memory... I know I will have peace.
Thanks be to God!!!
Kingdom Comes
-Sara Groves
When anger fills your heart
When in your pain and hurt
You find the strength to stop
You bless instead of curse
When doubting floods your soul
When all things feel unjust
You open up your heart
You find a way to trust
That's a little stone
That's a little mortar
That's a little seed
That's a little water
In the hearts of the sons and daughters
This kingdom's coming
When fear engulfs your mind
Says you protect your own
You still extend your hand
You open up your home
When sorrow fills your life
When in your grief and pain
You choose again to rise
You choose to bless the name
That's a little stone
That's a little mortar
That's a little seed
That's a little water
In the hearts of the sons and daughters
This kingdom's coming
In the mundane tasks of living
In the pouring out and giving
In the waking up and trying
In the laying down and dying
That's a little stone
That's a little mortar
That's a little seed
That's a little water
In the hearts of the sons and daughters
This kingdom's coming
Sunday, July 3, 2011
Ranch terror
"I'm sorry, we're out of ranch."
That's what the guy at the scary clown restaurant uttered in a little-too chipper manner the other day. Those words are even scarier than the clown. Miracle of miracles, thank you Lord, Ryan chose to eat his chicken nuggets with catsup that day. We'd waited for our food longer than usual in a fast-food establishment already, and Ryan was getting a little hyper, to say the least ("a little hyper" for a kid like Ryan is... well, cross a spider monkey and a laughing hyena and that's close. Hey, at least he's happy like that). He settled, ate, and we were able to get done and get our groceries.
Fast forward to this evening. Mom is at work out of town for the weekend, and we chose to try a restaurant that we'd heard several good things about (including that they were super sweet with kids... and they were). We picked a corner table, out of the way. The table was perfectly placed in a front window so the guyzos could watch the trains (trains are big in my hometown... really, really big). It was completely empty except for us when we arrived. Knowing that most of the churches in town are in session Sunday evenings around six, I thought this was the perfect time to give 'er a test run. Don't even ask if we visit churches while we're here. Short answer? Too much stress. I'd love to, but it's too much.
So we tried it. With no one in the place, I silently spiked the ball. Oh yeah! Mama one, autism ZIP!
First, I picked a table that was closest to the stupid sticky fly strip. These are pretty common in this part of the world. "Shoo-flies," as Ryan calls them, are meal-killers and deal-breakers for our boy. I think it's some hybrid of the buzzing and unpredictability combined with that light touch if they land on your skin. The minute they start... even one... buzzing around Ryan, he starts shaking, crying "it's a SHOO-FLY", covering his ears, and generally freaking out. One uber-hilarous, shocking moment... Ryan tried to pet the fly. He gently stretched out one finger and tried to touch the fly on the window. Needless to say, the shoo-fly wasn't interested in making friends. He was pretty talented, too. Eric is pretty awesome at killing the little buggers, but this one eluded him.
Next mistake... ambition. Silly mama. I ordered some fried quesadilla that looked like it'd be just like cheesy chippies at our usual Mexican restaurant back home. Soon as it came out, he asked for a burger. D'oh!
Then, the little dude needed ranch for chips. He wasn't interested in the cheese dip we ordered, other than making a nice chip-bouquet using the cup as a vase.
That's pretty much it. Well, those are the antagonists. The behavior resulting from the antagonists included banging on the window, screaming, beating his chest, banging on the table, yelling things like "want some RAAAAANCH!", and thrashing around in his chair.
The first mistake was actually trying to go out in the first place. Mom's having a bit of a drain problem that makes dishes a challenge, and she's looking at moving very soon. Long, long story. Ryan misses Granny while she's at work, and his behavior shows it. We knew he was having a rough day, yet we needed dinner... I could have cooked. I could have brought something home. But no.
This is one of the many times Eric and I want to smack ourselves, repeating "STUPIDSTUPIDSTUPID!"
But we've learned, among a lot of things, that you have to just keep swimming (thanks, Nemo). Keep going. Keep smiling. Keep your chin up. Even when there are tears dripping down your face, do your best to stay calm, respond out of love. We don't have this mastered, mind you. Knowing and doing are separate actions.
I must admit, when we got there, I thought it was going to be easy. Then, when people started arriving (yeah, I was wrong again) I was looking around to see if I knew anyone. When the fits started, I stopped looking around.
That's hard to admit.
It's hard to watch your three year old and 17 month old act like little angels, and be largely ignored while you deal with mister "ranch is life". It's also hard but amazing to watch your three year old give his favorite toy to his older brother to help him calm down.
I am proud of Ryan and all he is, just as I am proud of Richie and Maelynn. I just can't describe how it feels to watch your son in such a disturbed frenzy, powerless to help other than to stay calm and ride it out. My dear friend Tawana, who also has an ASD boy, said one time that she wished there were an "autism bubble" that she could throw up when her sweet boy is melting down in public. A little, instant privacy bubble. Oh, how I wish there was such a thing. The thing is, these things are not really fits. Not all of them. Telling the difference between a fit or a meltdown is half the battle sometimes. There are times that if I'm thinking I can avoid meltdowns, or at least have them at home.
Remember the poem "Footprints in the Sand"? You can view and read it here. I also included it below.
There are so many times I don't necessarily "feel" peaceful, yet I don't lose it. The things that frustrate us the most continue, yet we keep going. We keep starting over. It's not always fun, but we manage. We figure out a way to laugh, or at least not lose faith. People as us how we do it. The answer?
That is when He carries us.
Those times when we don't know what's next, don't know what else to take away or to use to reason, or when we've been completely outsmarted and our carefully conceived plans are made to look ridiculous in an instant, He carries us. When we look at each other for comfort, but all we find is a mirror of the frustration, He carries us. Holds us together. We will not quit living completely. We will adapt, we will guide, direct, and fight through it... but we will certainly not quit!
How do we do it? So many people have asked.
We don't. He does.
Praise Him!
That's what the guy at the scary clown restaurant uttered in a little-too chipper manner the other day. Those words are even scarier than the clown. Miracle of miracles, thank you Lord, Ryan chose to eat his chicken nuggets with catsup that day. We'd waited for our food longer than usual in a fast-food establishment already, and Ryan was getting a little hyper, to say the least ("a little hyper" for a kid like Ryan is... well, cross a spider monkey and a laughing hyena and that's close. Hey, at least he's happy like that). He settled, ate, and we were able to get done and get our groceries.
Fast forward to this evening. Mom is at work out of town for the weekend, and we chose to try a restaurant that we'd heard several good things about (including that they were super sweet with kids... and they were). We picked a corner table, out of the way. The table was perfectly placed in a front window so the guyzos could watch the trains (trains are big in my hometown... really, really big). It was completely empty except for us when we arrived. Knowing that most of the churches in town are in session Sunday evenings around six, I thought this was the perfect time to give 'er a test run. Don't even ask if we visit churches while we're here. Short answer? Too much stress. I'd love to, but it's too much.
So we tried it. With no one in the place, I silently spiked the ball. Oh yeah! Mama one, autism ZIP!
First, I picked a table that was closest to the stupid sticky fly strip. These are pretty common in this part of the world. "Shoo-flies," as Ryan calls them, are meal-killers and deal-breakers for our boy. I think it's some hybrid of the buzzing and unpredictability combined with that light touch if they land on your skin. The minute they start... even one... buzzing around Ryan, he starts shaking, crying "it's a SHOO-FLY", covering his ears, and generally freaking out. One uber-hilarous, shocking moment... Ryan tried to pet the fly. He gently stretched out one finger and tried to touch the fly on the window. Needless to say, the shoo-fly wasn't interested in making friends. He was pretty talented, too. Eric is pretty awesome at killing the little buggers, but this one eluded him.
Next mistake... ambition. Silly mama. I ordered some fried quesadilla that looked like it'd be just like cheesy chippies at our usual Mexican restaurant back home. Soon as it came out, he asked for a burger. D'oh!
Then, the little dude needed ranch for chips. He wasn't interested in the cheese dip we ordered, other than making a nice chip-bouquet using the cup as a vase.
That's pretty much it. Well, those are the antagonists. The behavior resulting from the antagonists included banging on the window, screaming, beating his chest, banging on the table, yelling things like "want some RAAAAANCH!", and thrashing around in his chair.
The first mistake was actually trying to go out in the first place. Mom's having a bit of a drain problem that makes dishes a challenge, and she's looking at moving very soon. Long, long story. Ryan misses Granny while she's at work, and his behavior shows it. We knew he was having a rough day, yet we needed dinner... I could have cooked. I could have brought something home. But no.
This is one of the many times Eric and I want to smack ourselves, repeating "STUPIDSTUPIDSTUPID!"
But we've learned, among a lot of things, that you have to just keep swimming (thanks, Nemo). Keep going. Keep smiling. Keep your chin up. Even when there are tears dripping down your face, do your best to stay calm, respond out of love. We don't have this mastered, mind you. Knowing and doing are separate actions.
I must admit, when we got there, I thought it was going to be easy. Then, when people started arriving (yeah, I was wrong again) I was looking around to see if I knew anyone. When the fits started, I stopped looking around.
That's hard to admit.
It's hard to watch your three year old and 17 month old act like little angels, and be largely ignored while you deal with mister "ranch is life". It's also hard but amazing to watch your three year old give his favorite toy to his older brother to help him calm down.
I am proud of Ryan and all he is, just as I am proud of Richie and Maelynn. I just can't describe how it feels to watch your son in such a disturbed frenzy, powerless to help other than to stay calm and ride it out. My dear friend Tawana, who also has an ASD boy, said one time that she wished there were an "autism bubble" that she could throw up when her sweet boy is melting down in public. A little, instant privacy bubble. Oh, how I wish there was such a thing. The thing is, these things are not really fits. Not all of them. Telling the difference between a fit or a meltdown is half the battle sometimes. There are times that if I'm thinking I can avoid meltdowns, or at least have them at home.
Remember the poem "Footprints in the Sand"? You can view and read it here. I also included it below.
| One night I dreamed I was walking along the beach with the Lord. |
| Many scenes from my life flashed across the sky. |
| In each scene I noticed footprints in the sand. |
| Sometimes there were two sets of footprints, |
| other times there were one set of footprints. |
| This bothered me because I noticed |
| that during the low periods of my life, |
| when I was suffering from |
| anguish, sorrow or defeat, |
| I could see only one set of footprints. |
| So I said to the Lord, |
| "You promised me Lord, |
| that if I followed you, |
| you would walk with me always. |
| But I have noticed that during |
| the most trying periods of my life |
| there have only been one |
| set of footprints in the sand. |
| Why, when I needed you most, |
| you have not been there for me?" |
| The Lord replied, |
| "The times when you have |
| seen only one set of footprints, |
| is when I carried you." |
| Mary Stevenson |
There are so many times I don't necessarily "feel" peaceful, yet I don't lose it. The things that frustrate us the most continue, yet we keep going. We keep starting over. It's not always fun, but we manage. We figure out a way to laugh, or at least not lose faith. People as us how we do it. The answer?
That is when He carries us.
Those times when we don't know what's next, don't know what else to take away or to use to reason, or when we've been completely outsmarted and our carefully conceived plans are made to look ridiculous in an instant, He carries us. When we look at each other for comfort, but all we find is a mirror of the frustration, He carries us. Holds us together. We will not quit living completely. We will adapt, we will guide, direct, and fight through it... but we will certainly not quit!
How do we do it? So many people have asked.
We don't. He does.
Praise Him!
Praise Him! praise Him! Jesus, our blessed Redeemer!
Sing, ye saints! His wonderful love proclaim!
Hail Him! hail Him! mightiest angels in glory;
Strength and honor give to His holy name!
Like a shepherd, Jesus will feed His people,
In His arms He carries them all day long;
O ye saints that live in the light of His presence,
Praise Him! praise Him! ever in joyful song!
Praise Him! praise Him! Jesus, our blessed Redeemer,
For our sins He suffered and bled and died;
He, our Rock, our Hope of eternal salvation,
Hail Him! hail Him! Jesus, the Crucified;
Loving Savior, meekly enduring sorrow,
Crowned with thorns that cruelly pierced His brow;
Once for us rejected, despised, and forsaken,
Prince of Glory, ever triumphant now.
Praise Him! praise Him! Jesus, our blessed Redeemer,
Heavenly portals, loud with hosannahs ring!
Jesus, Savior, reigneth for ever and ever;
Crown Him! crown Him! Prophet and Priest and King!
Death is vanquished! Tell it with joy, ye faithful,
Where is now thy victory, boasting grave?
Jesus lives! No longer thy portals are cheerless;
Jesus lives, the mighty and strong to save.
Source: http://www.hymnal.net/hymn.php/h/235#ixzz1R6dJ0mcP
Tuesday, June 28, 2011
Travel Mercies
Time off from work and school, for us, means travel. It means family, catching up, reminiscing, and generally being together. It means hours in the van, water, ice cream, cold drinks, laughs, snapset pools, rickety lawn chairs, bubbles, living out of suitcases, and being a bit nomadic for the purpose of retaining our kids' and our relationships with family, especially mine. Since I'm from eastern Oklahoma and we live in central Texas, we can't just spend the weekend at my Mom's. Once we get here, we're here for a little while, usually.
Did I mention my mother is a very patient person?
My Mom's house... Granny's house, to the kids... is someplace we all love to be. It's not quiet, especially not when we're here. It's not huge. It's not fancy, although we've worked to restore it. There are four small dogs who live here, and they take their positions as the alarm system seriously. Not a leaf blows in the yard that we don't hear about! And since Mom lives on the corner across a small street from the schools in town, you can imagine how exciting it can be. Not that she intended to have four dogs... one is inherited from Nanny, and one is my sister's dog. They're good dogs, but you add our 40 pound Australian shepherd to the mix, and it's exciting. The house isn't large, but it isn't tiny. It is old, and there are always challenges with an old house, especially when you suddently add five people to the mix.
Take that and add the issue of figuring out where Grandad is going to live and how to deal with and even find out what his issues are, traveling for my sister's wedding (which was wonderful), and just he ins and outs of every day life with three adults, three small kids and five dogs, and it's very exciting.
There is something to be said for love. The love and desire that conquers these challenges, issues, and excitements. There is something to be said for the inner pull that brings us together. All I wanted as a child was to be with my mother's family. Not because they're perfect. Not because everything is easy, or because of anything other than the fact that I love them. You know my mother is important to me, to say the least. My great-aunts are right up there with them. Technically Nanny's half-sisters, they're the first people I remember (other than Mother and Nanny) who I remember going out of their way to make me feel special. They're funny, sweet, caring, and loving. They love to look at old pictures and share their memories with me. They are treasures, Gladys Mae and Dixie. And now that Nanny's gone, they're ever so much more important.
To this point, I'm not certain, but I think our family has never dealt with a person in our midst with special needs. Especially not a hidden special need. We've had friends with issues, friends of friends with issues, but never one of our own afflicted, unless you count Alzheimer's and other forms of dementia. So take this family who thrives around a kitchen table with drinks, yummy food, old stories and laughter, and add someone with a social disorder.
Makes you feel every laugh, hear every word, and savor every moment with a gratitude I cannot explain.
I like to think our family is a true American family. Bring us your tired, your weary, your worn... we'll feed you and make you laugh. The funny thing is, I had no idea I was going to be more on the receiving end of that mercy and grace than I ever realized.
This weekend was my sister's wedding in Eufaula. I'm so proud of her. She was the most beautiful bride I could have imagined. She married a sweet, wonderful young man who has a great name (his name is Eric... or "too") and she had a beautiful wedding. Our Richie was the ring bearer. He was so stinkin' cute in his little tuxedo that matched Bree's Eric! But he would not stand still. No amount of "pomatoes" made him stand still. He wandered up to Bree and Eric at one point, wandered around the stage and into the choir loft. My daughter, during the procession, wandered up and started helping the pianist, who was most thankfully my dear mother in law! Ryan, ironically enough, did swimmingly. I was so proud of him. But this time, I was more proud of my sister. Through all my kids' antics, she smiled and laughed. She was happy and pleased as punch just to have them there. Not a bridezilla bone in her body. That's our girl!
What happened before the wedding, while I was at the church trying to help with last-minute details, I didn't find out until later. Eric, Mother, my great-aunts, Mae and Ryan were back at the hotel, trying to get dressed and ready for the wedding. Apparently, Ryan gave them a run for their money. Ryan loves doors. If you don't stay on top of him, those doors will be banged as he flaps and hums excitedly, stimming with all he's worth. Someone literally turned their back for a second and Ryan flung open a tall, mirrored closet door. Ryan survived, the door did not.
There was no anger, no backlash from my Mom or great-aunts. They simply called the front desk, had someone clean up the mess, and while they did tell me what happened, it wasn't in a "you really ought to teach that kid some manners" kind of way. I must add, the Best Western Eufaula Inn was ADORABLE about the whole ordeal. Later, when the kids began eating their promised Happy Meals from that place with the crazy clown, Ryan didn't have ranch. I asked, they didn't give it to us. We were in Mom, G'mae and Dixie's room for this meltdown. Eric scrambled for ranch or catsup, I dealt with the meltdown. They didn't ask us to leave, or ask why we "didn't just do" so and so to help him. They didn't understand. They didn't know what to do or say. But they did let us stay, treat us like they always have, and encourage us to keep going and know that they think we do a great job.
Yesterday, when Mom and I took Mae and Ryan to get groceries, I wanted to stop at a specialty type of store (the Chicken Store... it's pretty cool) that only has frozen meat, mostly chicken, to fill out some of the holes in our menu. Picture a room with a tile floor, smaller than a convenience store, with nothing but open-top refrigerated coolers lining the room. Ryan wanted to run around the whole time. Run, stimmy-yell, beat his chest... oh my word, the whole nine yards. Then, miracle of miracles, he ASKED TO GO TO THE BATHROOM! I was so excited. But I still had to get what I needed, and he was still melting down. So with the help of Mother, I managed to get a couple of things and shuttle him, screaming, to the van. We tried another place next door, but both stores had posted a "no public restroom" policy, and being myself, I didn't want to buck that. We made it to a convenience store where Ryan finally got to potty. One neat thing about that experience? Ryan was quiet enough as I was checking out that I was able to explain a little of his behavior and why to the lady behind the counter, who was a young mother herself. She was visibly uncomfortable, but smiled at Ryan and told him she liked his glasses. She was sweet and calm, even thanking us for coming in. And Mother? Encouraging to me, never suggesting that I try this and that, or that it would have gone much differently if I had just done it this way or that.
These are not earth-shattering experiences... or are they? These seemingly simple acts of grace and mercy are, whether we know it or not, Christlike in themselves. It's in these times, when faced with and emotional situation, when we are forced to choose in a split second between a reaction or a thoughful response. Not everyone can always avoid reacting to the panic/anger/fear based feeling that assaults our hearts in these times. But we can choose to make it our self-tradition to respond in love and thoughtful Christlikeness rather than reacting out of annoyance or unfairness. The chain-reactions that occur in these situations determine our legacy. They determine for what we will mostly be remembered. The lady behind the counter may or may not have known that I was doing my best to respond to Ryan, not react. My Mother, when I was a child, may or may not have realized I was watching as she extended grace and mercy to others, but I was. She was, when her mother did, and her mother was, when her mother did. And I'm still paying attention when she extends grace and mercy to my autism-meltdown roasted, weary self. I am so grateful to belong to a family with a heritage such as this... a legacy of acceptance and love. Of caring and overlooking. Of sticking together, of toughing it out and figuring out a way to laugh through the pain. And that Christlike love of each other is a legacy I hope I will keep. Autism, Alzheimer's cancer, death, times of less and times of frustration and unfairness and through our differences... we're still family, we're still friends. More than any thing my family could give, this is what I treasure, and all the more as I age, not just as a mother, wife, mother of a special needs child, but as a sinner saved by grace. I am imperfect, our children are messy and noisy, but Eric's family and mine still love having us around. And I am so grateful.
Legacy- Nicole Nordeman
I want to leave a legacy
How will they remember me?
Did I choose to love?
Did I point to You enough
To make a mark on things?
I want to leave an offering
A child of mercy and grace who
blessed your name unapologetically
And leave that kind of legacy
Did I mention my mother is a very patient person?
My Mom's house... Granny's house, to the kids... is someplace we all love to be. It's not quiet, especially not when we're here. It's not huge. It's not fancy, although we've worked to restore it. There are four small dogs who live here, and they take their positions as the alarm system seriously. Not a leaf blows in the yard that we don't hear about! And since Mom lives on the corner across a small street from the schools in town, you can imagine how exciting it can be. Not that she intended to have four dogs... one is inherited from Nanny, and one is my sister's dog. They're good dogs, but you add our 40 pound Australian shepherd to the mix, and it's exciting. The house isn't large, but it isn't tiny. It is old, and there are always challenges with an old house, especially when you suddently add five people to the mix.
Take that and add the issue of figuring out where Grandad is going to live and how to deal with and even find out what his issues are, traveling for my sister's wedding (which was wonderful), and just he ins and outs of every day life with three adults, three small kids and five dogs, and it's very exciting.
There is something to be said for love. The love and desire that conquers these challenges, issues, and excitements. There is something to be said for the inner pull that brings us together. All I wanted as a child was to be with my mother's family. Not because they're perfect. Not because everything is easy, or because of anything other than the fact that I love them. You know my mother is important to me, to say the least. My great-aunts are right up there with them. Technically Nanny's half-sisters, they're the first people I remember (other than Mother and Nanny) who I remember going out of their way to make me feel special. They're funny, sweet, caring, and loving. They love to look at old pictures and share their memories with me. They are treasures, Gladys Mae and Dixie. And now that Nanny's gone, they're ever so much more important.
To this point, I'm not certain, but I think our family has never dealt with a person in our midst with special needs. Especially not a hidden special need. We've had friends with issues, friends of friends with issues, but never one of our own afflicted, unless you count Alzheimer's and other forms of dementia. So take this family who thrives around a kitchen table with drinks, yummy food, old stories and laughter, and add someone with a social disorder.
Makes you feel every laugh, hear every word, and savor every moment with a gratitude I cannot explain.
I like to think our family is a true American family. Bring us your tired, your weary, your worn... we'll feed you and make you laugh. The funny thing is, I had no idea I was going to be more on the receiving end of that mercy and grace than I ever realized.
This weekend was my sister's wedding in Eufaula. I'm so proud of her. She was the most beautiful bride I could have imagined. She married a sweet, wonderful young man who has a great name (his name is Eric... or "too") and she had a beautiful wedding. Our Richie was the ring bearer. He was so stinkin' cute in his little tuxedo that matched Bree's Eric! But he would not stand still. No amount of "pomatoes" made him stand still. He wandered up to Bree and Eric at one point, wandered around the stage and into the choir loft. My daughter, during the procession, wandered up and started helping the pianist, who was most thankfully my dear mother in law! Ryan, ironically enough, did swimmingly. I was so proud of him. But this time, I was more proud of my sister. Through all my kids' antics, she smiled and laughed. She was happy and pleased as punch just to have them there. Not a bridezilla bone in her body. That's our girl!
What happened before the wedding, while I was at the church trying to help with last-minute details, I didn't find out until later. Eric, Mother, my great-aunts, Mae and Ryan were back at the hotel, trying to get dressed and ready for the wedding. Apparently, Ryan gave them a run for their money. Ryan loves doors. If you don't stay on top of him, those doors will be banged as he flaps and hums excitedly, stimming with all he's worth. Someone literally turned their back for a second and Ryan flung open a tall, mirrored closet door. Ryan survived, the door did not.
There was no anger, no backlash from my Mom or great-aunts. They simply called the front desk, had someone clean up the mess, and while they did tell me what happened, it wasn't in a "you really ought to teach that kid some manners" kind of way. I must add, the Best Western Eufaula Inn was ADORABLE about the whole ordeal. Later, when the kids began eating their promised Happy Meals from that place with the crazy clown, Ryan didn't have ranch. I asked, they didn't give it to us. We were in Mom, G'mae and Dixie's room for this meltdown. Eric scrambled for ranch or catsup, I dealt with the meltdown. They didn't ask us to leave, or ask why we "didn't just do" so and so to help him. They didn't understand. They didn't know what to do or say. But they did let us stay, treat us like they always have, and encourage us to keep going and know that they think we do a great job.
Yesterday, when Mom and I took Mae and Ryan to get groceries, I wanted to stop at a specialty type of store (the Chicken Store... it's pretty cool) that only has frozen meat, mostly chicken, to fill out some of the holes in our menu. Picture a room with a tile floor, smaller than a convenience store, with nothing but open-top refrigerated coolers lining the room. Ryan wanted to run around the whole time. Run, stimmy-yell, beat his chest... oh my word, the whole nine yards. Then, miracle of miracles, he ASKED TO GO TO THE BATHROOM! I was so excited. But I still had to get what I needed, and he was still melting down. So with the help of Mother, I managed to get a couple of things and shuttle him, screaming, to the van. We tried another place next door, but both stores had posted a "no public restroom" policy, and being myself, I didn't want to buck that. We made it to a convenience store where Ryan finally got to potty. One neat thing about that experience? Ryan was quiet enough as I was checking out that I was able to explain a little of his behavior and why to the lady behind the counter, who was a young mother herself. She was visibly uncomfortable, but smiled at Ryan and told him she liked his glasses. She was sweet and calm, even thanking us for coming in. And Mother? Encouraging to me, never suggesting that I try this and that, or that it would have gone much differently if I had just done it this way or that.
These are not earth-shattering experiences... or are they? These seemingly simple acts of grace and mercy are, whether we know it or not, Christlike in themselves. It's in these times, when faced with and emotional situation, when we are forced to choose in a split second between a reaction or a thoughful response. Not everyone can always avoid reacting to the panic/anger/fear based feeling that assaults our hearts in these times. But we can choose to make it our self-tradition to respond in love and thoughtful Christlikeness rather than reacting out of annoyance or unfairness. The chain-reactions that occur in these situations determine our legacy. They determine for what we will mostly be remembered. The lady behind the counter may or may not have known that I was doing my best to respond to Ryan, not react. My Mother, when I was a child, may or may not have realized I was watching as she extended grace and mercy to others, but I was. She was, when her mother did, and her mother was, when her mother did. And I'm still paying attention when she extends grace and mercy to my autism-meltdown roasted, weary self. I am so grateful to belong to a family with a heritage such as this... a legacy of acceptance and love. Of caring and overlooking. Of sticking together, of toughing it out and figuring out a way to laugh through the pain. And that Christlike love of each other is a legacy I hope I will keep. Autism, Alzheimer's cancer, death, times of less and times of frustration and unfairness and through our differences... we're still family, we're still friends. More than any thing my family could give, this is what I treasure, and all the more as I age, not just as a mother, wife, mother of a special needs child, but as a sinner saved by grace. I am imperfect, our children are messy and noisy, but Eric's family and mine still love having us around. And I am so grateful.
Legacy- Nicole Nordeman
I want to leave a legacy
How will they remember me?
Did I choose to love?
Did I point to You enough
To make a mark on things?
I want to leave an offering
A child of mercy and grace who
blessed your name unapologetically
And leave that kind of legacy
Saturday, June 18, 2011
They want to be just like you.
Have you ever packed for a trip with five people?
Have you ever packed a trip for five people with them all in the house? Gets interesting. The saving grace for me is my husband picking out his own clothes. A guy who helps. Who knew?
Single mamas, you have my utmost respect. Mamas whose husbands are out more than they're in-town, you do too. I do not know how you do it. I don't know how mine did, and there was just one of me!
When we're getting ready to go somewhere, I almost always do all the packing. Since back surgery, I do the loading into the van, too. But even without back surgery, there's always something Eric needs to be doing. Most guys, I'll bet, would do their own thing without a thought to their wives. My husband is the opposite. He wants to do for me, then do his own stuff. The only problem is that would leave him with no time to do the things he needs to do. Pretty cool, huh. It's my responsibility as his wife to NOT take advantage of this, since I don't want to be disrespectful.
No, I really don't. Not kidding.
I'm not into the man-bashing, war of the sexes mess so many women are. Yes, there are differences. Yes, at times they can be hilarious... but when hilarious turns to running over, no longer building up, and to downright disrespect and tearing down, the differences are no longer worthy of jocularity. There's a line.
At this point I have to admit I'm not into the "dad's right even if we go off a cliff" thing. Marriages only work when both parties are interested in the whole bible and all its truths and principles, and not just the "wives obey your husbands" part. And it is in there, sisters. I'm not throwin' you under the bus, girls. Hang with me.
Check out 1 Peter 3.
The thing that makes it easier for me to respect my husband, to revere him, to obey (yes, even when I think I know better), is that my husband read the rest of the passage. Not only did he read it, he had one better. His Dad lived it. His father was and is a bible he could read by the way he treats his wife and children.
I did not grow up with men who really knew what this passage meant. My childhood was filled with fear of men, as creatures who delight in exerting control. Men were scary folk to be feared who drank too much, threw things, hit people, used bad language, and were just generally hurtful beings. My father was one such man. Having demons from childhood he'd never worked through, such as an alcoholic, sociopathic father and a mother who liked to, we'll just say, "run around," he tried most of his life to fill the God-shaped hole in his heart with women, drugs, alcohol, work... anything that he thought would work. He sought hard most of his life to be loved. The problem with that was that people fail. Work stops. Chemicals eventually eat you alive. The only way he knew to deal with problems was with fists, alcohol, and screaming obscenities. I've heard stories. Not only from him, not only when he was sober, not only when he was the opposite. No one can ever know everything about someone, but I knew enough never to make him angry at all cost. And that knowledge did not come simply from stories.
So imagine my surprise when, after a lifetime of this mess and not giving the "father-figure" types in my life much of a chance, I meet Eric. Sweet, unassuming, loving Eric. No, I did not say perfect Eric. We both make mistakes. But of all the men roaming the earth, he knows how to be a man.
He may not work with his hands much, but you should hear him play trombone. You should hear the music he writes. You should go to a concert, marching contest, or drum corps show with him, then discuss it afterward. It's amazing what he remembers, what he heard.
No, he won't eat at Hooters with you. He won't go to a strip club, either. Don't ask. No, I did not make that rule. He made it for himself, long ago, because he was raised to respect women for real. Yes, I am very proud of this! It makes me stand a little straighter, feel a little better about what I see in the mirror, and know with more confidence that he really was at work when he doesn't get home until ten.
No, he doesn't drive a sportscar. He is proud to drive the truck he has, that belonged to my Dad (stepdad). He is absolutely cool with driving a minivan, complete with Tinkerbell steering wheel cover and floor mats.
He doesn't make getting things past me a pastime. He's not sneaky, he is truthful. He is home when he has free time, ready to do whatever it is that needs doing.
Yes, whatever needs doing includes diapers. Cloth diapers, and yes, he rinses them. Now that he's home on vacation, he learned to wash them "so that more than one of us is doing that" in his words. No, I didn't ask him to learn.
Until he had back surgery in January, for three kids, he's been the night captain. He proudly gets up, searches for binkies, got bottles, changes diapers, finds loveys, and rocks whoever back to sleep.
He listens, and in listening, wants to understand. He wants to understand why I feel the way I do about things. He wants to know what I think.
As I said earlier, he will be the first person to say I can do the job he does at school. He will also come home and ask what to do about something when he's not sure.
He'd rather I have what I want. He's often been caught spending his own birthday or Christmas money on something for the kids.
He gives and gives, never asking for anything in return. He knows that a true gift has no price tag. No strings. No guilt offering ever required.
He forgives me when I'm cranky, cantankerous, and downright ugly.
He struggles alongside me. Not in front of me, not behind me. Beside me. Sometimes I may need him to step in front... but if he does, he defends me in a Christlike way. Through autism, through parenthood, sickness, lack of everything... he's right there. He doesn't slink away. We deal with it, whatever it is.
He doesn't embarrass me for fun. He does make fun of me when it's called for! I'd go nuts without a sense of humor.
I could go on and on. For these reasons and infinitely more than I can list, I'll be proud to have our boys be just like their Daddy. Yes, he makes mistakes. But he's the best father I could ask for to raise our children, and he's a way better husband than I could have dreamed.
This Father's Day, I thank the Lord for Eric... and for his Dad, too. One great Dad and believer begat another. I'm so thankful for the legacy that will surely pass to our boys and our girl. The kids may not say it, honey... but every time they pretend to put on your back brace, clunk around in your shoes, or repeat what you say, they're saying "I want to be just like you." Thank you both for doing your best to be godly men, fathers, and husbands so that we can be happy that the kids want to be just like you.
Have you ever packed a trip for five people with them all in the house? Gets interesting. The saving grace for me is my husband picking out his own clothes. A guy who helps. Who knew?
Single mamas, you have my utmost respect. Mamas whose husbands are out more than they're in-town, you do too. I do not know how you do it. I don't know how mine did, and there was just one of me!
When we're getting ready to go somewhere, I almost always do all the packing. Since back surgery, I do the loading into the van, too. But even without back surgery, there's always something Eric needs to be doing. Most guys, I'll bet, would do their own thing without a thought to their wives. My husband is the opposite. He wants to do for me, then do his own stuff. The only problem is that would leave him with no time to do the things he needs to do. Pretty cool, huh. It's my responsibility as his wife to NOT take advantage of this, since I don't want to be disrespectful.
No, I really don't. Not kidding.
I'm not into the man-bashing, war of the sexes mess so many women are. Yes, there are differences. Yes, at times they can be hilarious... but when hilarious turns to running over, no longer building up, and to downright disrespect and tearing down, the differences are no longer worthy of jocularity. There's a line.
At this point I have to admit I'm not into the "dad's right even if we go off a cliff" thing. Marriages only work when both parties are interested in the whole bible and all its truths and principles, and not just the "wives obey your husbands" part. And it is in there, sisters. I'm not throwin' you under the bus, girls. Hang with me.
Check out 1 Peter 3.
1Likewise, wives, be subject to your own husbands, so that even if some do not obey the word, they may be won without a word by the conduct of their wives, 2when they see your respectful and pure conduct. (ESV)This is one a lot of men sadly like to throw around, showing their ignorance of the rest of the passage. See, the respect we are to have for our husbands should flow from the desire to first obey God, and then respect the husband who loves us. This is where it gets easy for me. Not all the time, mind you. There are times I'm not in the mood to say "yes, dear". To tell the truth, there have been times when I wasn't ready to even just tap him on the shoulder and say, "Now honey..." when I didn't think he was in the right. All that would mean I'm perfect, and we've covered that. I'm as wretched as anyone else until you add Jesus to the equation.
The thing that makes it easier for me to respect my husband, to revere him, to obey (yes, even when I think I know better), is that my husband read the rest of the passage. Not only did he read it, he had one better. His Dad lived it. His father was and is a bible he could read by the way he treats his wife and children.
7Likewise, husbands, live with your wives in an understanding way, showing honor to the woman as the weaker vessel, since they are heirs with you of the grace of life, so that your prayers may not be hindered. 1 Peter 3:7 (ESV)Don't let the "weaker vessel" part throw you off. Ever asked a man to open a jar for you? Me too. But I also feel cared for and respected when men do little things like open the door for me. Call me what you will, I like being respected that way. My husband opens doors for me, but he also knows I can do his job. It's all about balance and respect. Once, a repairman came to fix my Nanny's stove. Granted, it was the mid to late fifties. She asked, when the job was done, what the problem had been, expecting a real explanation. Instead, she was told that the cord was bent, so the electricity couldn't get through. That is not respect, that's demeaning. But I digress.
I did not grow up with men who really knew what this passage meant. My childhood was filled with fear of men, as creatures who delight in exerting control. Men were scary folk to be feared who drank too much, threw things, hit people, used bad language, and were just generally hurtful beings. My father was one such man. Having demons from childhood he'd never worked through, such as an alcoholic, sociopathic father and a mother who liked to, we'll just say, "run around," he tried most of his life to fill the God-shaped hole in his heart with women, drugs, alcohol, work... anything that he thought would work. He sought hard most of his life to be loved. The problem with that was that people fail. Work stops. Chemicals eventually eat you alive. The only way he knew to deal with problems was with fists, alcohol, and screaming obscenities. I've heard stories. Not only from him, not only when he was sober, not only when he was the opposite. No one can ever know everything about someone, but I knew enough never to make him angry at all cost. And that knowledge did not come simply from stories.
So imagine my surprise when, after a lifetime of this mess and not giving the "father-figure" types in my life much of a chance, I meet Eric. Sweet, unassuming, loving Eric. No, I did not say perfect Eric. We both make mistakes. But of all the men roaming the earth, he knows how to be a man.
He may not work with his hands much, but you should hear him play trombone. You should hear the music he writes. You should go to a concert, marching contest, or drum corps show with him, then discuss it afterward. It's amazing what he remembers, what he heard.
No, he won't eat at Hooters with you. He won't go to a strip club, either. Don't ask. No, I did not make that rule. He made it for himself, long ago, because he was raised to respect women for real. Yes, I am very proud of this! It makes me stand a little straighter, feel a little better about what I see in the mirror, and know with more confidence that he really was at work when he doesn't get home until ten.
No, he doesn't drive a sportscar. He is proud to drive the truck he has, that belonged to my Dad (stepdad). He is absolutely cool with driving a minivan, complete with Tinkerbell steering wheel cover and floor mats.
He doesn't make getting things past me a pastime. He's not sneaky, he is truthful. He is home when he has free time, ready to do whatever it is that needs doing.
Yes, whatever needs doing includes diapers. Cloth diapers, and yes, he rinses them. Now that he's home on vacation, he learned to wash them "so that more than one of us is doing that" in his words. No, I didn't ask him to learn.
Until he had back surgery in January, for three kids, he's been the night captain. He proudly gets up, searches for binkies, got bottles, changes diapers, finds loveys, and rocks whoever back to sleep.
He listens, and in listening, wants to understand. He wants to understand why I feel the way I do about things. He wants to know what I think.
As I said earlier, he will be the first person to say I can do the job he does at school. He will also come home and ask what to do about something when he's not sure.
He'd rather I have what I want. He's often been caught spending his own birthday or Christmas money on something for the kids.
He gives and gives, never asking for anything in return. He knows that a true gift has no price tag. No strings. No guilt offering ever required.
He forgives me when I'm cranky, cantankerous, and downright ugly.
He struggles alongside me. Not in front of me, not behind me. Beside me. Sometimes I may need him to step in front... but if he does, he defends me in a Christlike way. Through autism, through parenthood, sickness, lack of everything... he's right there. He doesn't slink away. We deal with it, whatever it is.
He doesn't embarrass me for fun. He does make fun of me when it's called for! I'd go nuts without a sense of humor.
I could go on and on. For these reasons and infinitely more than I can list, I'll be proud to have our boys be just like their Daddy. Yes, he makes mistakes. But he's the best father I could ask for to raise our children, and he's a way better husband than I could have dreamed.
This Father's Day, I thank the Lord for Eric... and for his Dad, too. One great Dad and believer begat another. I'm so thankful for the legacy that will surely pass to our boys and our girl. The kids may not say it, honey... but every time they pretend to put on your back brace, clunk around in your shoes, or repeat what you say, they're saying "I want to be just like you." Thank you both for doing your best to be godly men, fathers, and husbands so that we can be happy that the kids want to be just like you.
I Want to Be Just Like You
-Phillips, Craig, and Dean
He climbs in my lap for a goodnight hug
He calls me Dad and I call him Bub
With his faded old pillow and a bear named Pooh
He snuggles up close and says, "I want to be like you"
I tuck him in bed and I kiss him goodnight
Trippin' over the toys as I turn out the light
And I whisper a prayer that someday he'll see
He's got a father in God 'cause he's seen Jesus in me
Lord, I want to be just like You
'Cause he wants to be just like me
I want to be a holy example
For his innocent eyes to see
Help me be a living Bible, Lord
That my little boy can read
I want to be just like You
'Cause he wants to be like me
Got to admit I've got so far to go
Make so many mistakes and I'm sure that You know
Sometimes it seems no matter how hard I try
With all the pressures in life I just can't get it all right
But I'm trying so hard to learn from the best
Being patient and kind, filled with Your tenderness
'Cause I know that he'll learn from the things that he sees
And the Jesus he finds will be the Jesus in me
Right now from where he stands I may seem mighty tall
But it's only 'cause I'm learning from the best Father of them all
Monday, June 13, 2011
The words I fear the most...
I just don't know.
I really don't.
As Ryan's mother, I'm expected to be able to explain him. And I can, to a degree. But there are things I cannot explain. He can play "Twinkle, Twinkle, Little Star" in three different keys on the piano, and even learned the tag that is at the end of that cute little melody on one of our electronic baby pianos. Learned it by ear. But can't answer yes or no questions. He can play a double stroke roll on a bass drum, but can't hold a pencil correctly. We caught him, quite by accident, reading a whole book the other day out loud. But when you ask him to do it? Well, if you do that you'll likely be screamed at or just ignored... and ignored is at best.
He has learned so many phrases from apps on the ipad, from movies, from little kids' shows, but "stop it" somehow eludes him when his sister pats his back. He wants to be hugged tight by me or his daddy, but can't stand his sister and usually Richie to get on the same couch as he is. He would walk straight into traffic, given the chance, but the sharks on Finding Nemo make him hide behind the couch. He begs us to run the vaccuum, but then hides on the couch and watches from afar.
When the notion strikes him, Ryan screams, squeals, and gutterally yells, contorting his face to match his frustration. He has practiced almost to an artform the art of self-injury. And thanks a lot, Nemo writers, for putting in the movie times when someone is injured and says "ow". He smacks himself (even in a good mood) just to say "ow!" Usually I can be patient and help him... to say "you're okay" calmly enough that he can stop... but other times he catches me so off guard... it frustrates me that I'm not used to it. I guess I am to a point, but not enough. I wish I could say I never raised my voice back, but... and I know it's awful... I can't.
It all comes back to fear. Fear that I can't handle this, or that the kids won't have a great time growing up. I want them to have fun, to be happy and feel safe. When you're driving down the road in complete quiet, or having quiet conversation, and the van is instantly flooded with a blood-curdling scream from the back end of the van, it's hard to stay calm. And what do you do, other than ask what's wrong, ask what he needs, ask him not to do that... askaskaskaskask... and usually with no answer. Or the answer is what you said, verbatim. Even through tears. And it's many, many times a day, and not just in the van. Sometimes there's an obvious cause. Many times, maybe an air molecule frowned at him... I have no idea. Therefore I cannot fix it, help it, and certainly cannot control it.
My mother, for as long as I can remember, has been my greatest comfort with skin on. Hurt, scared, angry, sad... even the thought of my mom calmed me. We're still very close. I guess I wanted... no, expected... that I would be the same for my children. But sometimes it just seems like he'd rather I went away. Give him what he wants, and back away, thank you.
"Life here in the land of autism has forced authenticity upon our family." As I read this in Diary of a Mom, I realized how right Jess is. We are forced to the end of our ropes, forced to our faith, forced to truly rely on the knowledge of the character of God. To cling to the truths we've known. Remember that poster with the kitty hanging on to something... was it a branch, the handle of a basket, I can't remember... that said "Faith isn't faith until it's all you're holding onto?" We're at the point where faith is having let go, been caught, peieced back together, and put back enough to know that it will happen again. And each time you can hang on a little tighter, a little longer... but still fall and know a little quicker that it'll be okay.
"But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me." (2 Corinthians 12:8-10) Never do I come to the cyber-paper thinking I have it figured out; nor am I naive enough to think that because I have strung together words that explain how I get through it mean I've figured a way around my weaknesses. But the autism life has a way of stripping away the layers of uselessness, leaving you standing wherever you are, weaknesses and soul bwhether you like it or not. The trivial seems more trite. The surface-level unbearable. Truth is a must, honesty a necessity, not merely a "should". Autism in your family will force you to put feet to the things you profess to believe; to truly live by faith.
Nemo's over, and Ryan is dancing in his sweet way to the end credits. He's already said "well hello star" and "goodbye star" to the starfish on the screen... And now, in whale, he's asking for a brown cookie. So if you'll excuse me, I've fallen several times today and stood back up, and now I'm going to get my kids a cookie.
If you haven't heard it before, thank you for joining me through this journey. I appreciate you more than you know.
I really don't.
As Ryan's mother, I'm expected to be able to explain him. And I can, to a degree. But there are things I cannot explain. He can play "Twinkle, Twinkle, Little Star" in three different keys on the piano, and even learned the tag that is at the end of that cute little melody on one of our electronic baby pianos. Learned it by ear. But can't answer yes or no questions. He can play a double stroke roll on a bass drum, but can't hold a pencil correctly. We caught him, quite by accident, reading a whole book the other day out loud. But when you ask him to do it? Well, if you do that you'll likely be screamed at or just ignored... and ignored is at best.
He has learned so many phrases from apps on the ipad, from movies, from little kids' shows, but "stop it" somehow eludes him when his sister pats his back. He wants to be hugged tight by me or his daddy, but can't stand his sister and usually Richie to get on the same couch as he is. He would walk straight into traffic, given the chance, but the sharks on Finding Nemo make him hide behind the couch. He begs us to run the vaccuum, but then hides on the couch and watches from afar.
When the notion strikes him, Ryan screams, squeals, and gutterally yells, contorting his face to match his frustration. He has practiced almost to an artform the art of self-injury. And thanks a lot, Nemo writers, for putting in the movie times when someone is injured and says "ow". He smacks himself (even in a good mood) just to say "ow!" Usually I can be patient and help him... to say "you're okay" calmly enough that he can stop... but other times he catches me so off guard... it frustrates me that I'm not used to it. I guess I am to a point, but not enough. I wish I could say I never raised my voice back, but... and I know it's awful... I can't.
It all comes back to fear. Fear that I can't handle this, or that the kids won't have a great time growing up. I want them to have fun, to be happy and feel safe. When you're driving down the road in complete quiet, or having quiet conversation, and the van is instantly flooded with a blood-curdling scream from the back end of the van, it's hard to stay calm. And what do you do, other than ask what's wrong, ask what he needs, ask him not to do that... askaskaskaskask... and usually with no answer. Or the answer is what you said, verbatim. Even through tears. And it's many, many times a day, and not just in the van. Sometimes there's an obvious cause. Many times, maybe an air molecule frowned at him... I have no idea. Therefore I cannot fix it, help it, and certainly cannot control it.
My mother, for as long as I can remember, has been my greatest comfort with skin on. Hurt, scared, angry, sad... even the thought of my mom calmed me. We're still very close. I guess I wanted... no, expected... that I would be the same for my children. But sometimes it just seems like he'd rather I went away. Give him what he wants, and back away, thank you.
"Life here in the land of autism has forced authenticity upon our family." As I read this in Diary of a Mom, I realized how right Jess is. We are forced to the end of our ropes, forced to our faith, forced to truly rely on the knowledge of the character of God. To cling to the truths we've known. Remember that poster with the kitty hanging on to something... was it a branch, the handle of a basket, I can't remember... that said "Faith isn't faith until it's all you're holding onto?" We're at the point where faith is having let go, been caught, peieced back together, and put back enough to know that it will happen again. And each time you can hang on a little tighter, a little longer... but still fall and know a little quicker that it'll be okay.
"But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me." (2 Corinthians 12:8-10) Never do I come to the cyber-paper thinking I have it figured out; nor am I naive enough to think that because I have strung together words that explain how I get through it mean I've figured a way around my weaknesses. But the autism life has a way of stripping away the layers of uselessness, leaving you standing wherever you are, weaknesses and soul bwhether you like it or not. The trivial seems more trite. The surface-level unbearable. Truth is a must, honesty a necessity, not merely a "should". Autism in your family will force you to put feet to the things you profess to believe; to truly live by faith.
By Faith
By faith we see the hand of God
In the light of creation's grand designWe cannot see the end of this. But we choose to "hold unswervingly to the hope we profess, for He who promised us is faithful!" I was thinking this morning on my run about acceptance... and the more I thought, the more I dream of a place where not just the outward is looked past, but the inward... I dream of a place where all we can see in each other is what God sees through the wondrous filter of Christ... past our inner failures, inadequacies, and downright ickiness. And such a place exists... it's called heaven. Until then, we will stand for our children, we will advocate, teach, drive them to therapy, adapt for them, and make time to simply enjoy them. Anything else would be a waste. We will fail, but we will try again. We will stumble, but we will stand again.
In the lives of those who prove His faithfulness
Who walk by faith and not by sight
By faith our fathers roamed the earth
With the power of His promise in their hearts
Of a holy city built by God's own hand
A place where peace and justice reign
We will stand as children of the promise
We will fix our eyes on Him our soul's reward
Till the race is finished and the work is done
We'll walk by faith and not by sight
By faith the prophets saw a day
When the longed-for Messiah would appear
With the power to break the chains of sin and death
And rise triumphant from the grave
By faith the church was called to go
In the power of the Spirit to the lost
To deliver captives and to preach good news
In every corner of the earth
We will stand...
By faith this mountain shall be moved
And the power of the gospel shall prevail
For we know in Christ all things are possible
For all who call upon His name
We will stand...
Words and Music by Keith & Kristyn Getty
& Stuart Townend
Nemo's over, and Ryan is dancing in his sweet way to the end credits. He's already said "well hello star" and "goodbye star" to the starfish on the screen... And now, in whale, he's asking for a brown cookie. So if you'll excuse me, I've fallen several times today and stood back up, and now I'm going to get my kids a cookie.
If you haven't heard it before, thank you for joining me through this journey. I appreciate you more than you know.
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