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!!!
Showing posts with label ASD. Show all posts
Showing posts with label ASD. Show all posts
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!!!
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