Showing posts with label autism parenting. Show all posts
Showing posts with label autism parenting. Show all posts
Monday, February 27, 2012
Wednesday, February 15, 2012
Ryan's Tired.
So Ryan had a major first last night. I about fell over. Never ever before can I recall him expressing himself this way. It was time to get in the bath, and as I helped him get undressed, he comes out with this shocker:
"I'm tired."
I KNOW! I told you I about fell over! After sitting there for a while, mouth agape, I promised him that he could go to bed as soon as his bath was over.
What's the big deal? Everyone says that. Everyone complains. People have finally quit telling me that I'll be sick of him talking when he really gets going. No, I'm not sick of him talking yet. I quite enjoy hearing him speak. It's the screaming that hurts. I quite enjoy all the echolalic gobbledygook that makes no sense, frankly! He says things like firetruck siren, number 22, go to the [insert letter or number] elevator, stuff like that. Random, usually. And he's begun this while we drive down the road (and sometimes when we're in the house)... every time he sees a "do not enter" sign, he looks at me and says "Do not enter, Mommy!" To which I reply, "Thanks, baby. I won't." But to tell me he's cold/tired/hungry/thirsty/sleepy/angry... nope. Never.
So I nearly cried when he told me he was tired.
Funny thing about me, maybe it's just me... I have reached the point with this thing where I rarely cry when I'm upset. Soon as the kids do something awesome, I'm boohooing like crazy. Sometimes I just look at 'em and I can't stand it. Other times they say something sweet, like when Richie and Maelynn try so hard to help their brother.
But it's these little things, these little celebrations, that set us apart to a degree. I'm sure a lot of parents get sick of whining about being tired. And that's okay! But to us, it's huge. Ginormous. A glimmer of hope in a somewhat frustrating land.
Today, I was sitting outside the therapy room with the littles, and I heard something I hadn't in a while. Screaming. Then thumping on the wall. For some reason, I found out later, a switch flipped and a compliant, happy to try whatever Ryan turned to screaming, head beating, wall-hitting Ryan. It happens. Everything down to the way you touch him can cause it, but when you've reached that point, you could offer anything and it wouldn't help. It's like he's fallen through to another dimension, and something there is tormenting him to no end. You want to reach through the fear, take his hand, and guide him out. Guide him back to Ryan. The boy who giggles and snuggles, the boy who lets his little brother fall asleep sharing his pillow so he can watch the iPad while big brother plays. The boy who tells himself "Mae-mae tickles" when his baby sister touches him, to calm himself so he won't scare her. I don't know how he gets down to that depth. I can tell you some of the things that can send him there, but I cannot... and this heartbreaking... I cannot tell you why. I can tell you some things to avoid, but not all. Candles, butterflies, flies, washers, dishwashers will send him to hysterics. Crowds are hard, as is waiting. We do our best to not completely avoid any of these things.
This is where I start to look around. This past week, when Ryan was completely apart from together and we were on our way back to the hotel, I kinda went numb. I saw faces pass by. I saw a couple of people obviously staring (okay, way more than a couple), and one even appeared to be laughing at him. The thing that hurts the most is watching my child suffer. The thing that makes it worse? The thought that someone, somewhere, is thinking that this is just a kid pitching a fit. That he has no place here. That he's bothering them, that this behavior belongs somewhere else. I know, I know. I can't spend my whole life worrying about it. I know it happens. It's happened to me in the past, and it happens to people I know with kids like Ryan all the time.
The other night, as I scrolled through the ol' Facebook, I came across this...
It was posted by our cousin, my husband's if you want to split hairs. She has a child on the spectrum as well, and we have loved getting to know each other online! I'm pretty sure it's anonymous, but whoever anonymous is, he or she has my deepest thanks. This is so "us" it's scary. What someone else sees or hears as an annoyance is our whole life. For just a small sliver of time, we all have a choice in this matter as a bystander. We can make it worse, or we can seek to make it better. From my experience, at this point, even the most well-meant advice is not helpful. Chances are we've tried it all at this point, and we just want to get out of there. Dignity is out the door, and at this point, we wish we were too. But whether he's on the other side of the wall or in our arms, we still can't help much. What bystanders are seeing at this point is just the tip of the iceberg.
So what do I do? It's so not fair! It's not his fault! It's not my fault!
Right. It's not. And the problem, so often for me, is that I want everyone to know that we are innocent. We are doing the best we can. But the truth is that I need my patience and understanding for my son. I need to remember... I must work at remembering and knowing... that others' opinions of our outward appearance aren't mine to control. All I can do is perform for the only audience I have. Do what I can, keep going, do my best, and remember that only I know what I have to deal with. I can attempt to explain, but only willing ears will listen. Please don't misunderstand... I love that post and will continue to do my best when I can to educate others about us and folks like us! But as much as I appreciate what it says, I know that no amount of cleverly-worded sayings or pleas will prevent me from experiencing this kind of hurt. I will keep sharing them! I will keep sharing our story! But I will also promise you that I will continue, and more seriously, working toward worrying about Ryan, his feelings, our family, and of course my audience of one.
This Journey is My Own
~Sara Groves
When I stand before the Lord, I'll be standing alone.
This journey is my own.
Still I want man's advice,
and I need man's approval,
but this journey is my own. .
Why would I want to live for man
and pay the highest price?
What would it mean to gain the world, only to lose my life? .
So much of what I do is to make a good impression.
This journey is my own.
So much of what I say is to make myself look better.
This journey is my own. .
I have never felt relief like I feel it right now.
This journey is my own.
'Cause trying to please the world it was breaking me down, it was breaking me down. .
Now I live and I breathe for an audience of one, now I live and I breath for an audience of one.
Now I live and I breathe for an audience of one, 'cause I know this journey is my own. .
You can live for someone else, and it will only bring you pain. I can't even judge myself.
Only the Lord can say, "Well done."
No, I don't know any of those people... I just love this song. :-) YouTube rocks!
"I'm tired."
I KNOW! I told you I about fell over! After sitting there for a while, mouth agape, I promised him that he could go to bed as soon as his bath was over.
What's the big deal? Everyone says that. Everyone complains. People have finally quit telling me that I'll be sick of him talking when he really gets going. No, I'm not sick of him talking yet. I quite enjoy hearing him speak. It's the screaming that hurts. I quite enjoy all the echolalic gobbledygook that makes no sense, frankly! He says things like firetruck siren, number 22, go to the [insert letter or number] elevator, stuff like that. Random, usually. And he's begun this while we drive down the road (and sometimes when we're in the house)... every time he sees a "do not enter" sign, he looks at me and says "Do not enter, Mommy!" To which I reply, "Thanks, baby. I won't." But to tell me he's cold/tired/hungry/thirsty/sleepy/angry... nope. Never.
So I nearly cried when he told me he was tired.
Funny thing about me, maybe it's just me... I have reached the point with this thing where I rarely cry when I'm upset. Soon as the kids do something awesome, I'm boohooing like crazy. Sometimes I just look at 'em and I can't stand it. Other times they say something sweet, like when Richie and Maelynn try so hard to help their brother.
But it's these little things, these little celebrations, that set us apart to a degree. I'm sure a lot of parents get sick of whining about being tired. And that's okay! But to us, it's huge. Ginormous. A glimmer of hope in a somewhat frustrating land.
Today, I was sitting outside the therapy room with the littles, and I heard something I hadn't in a while. Screaming. Then thumping on the wall. For some reason, I found out later, a switch flipped and a compliant, happy to try whatever Ryan turned to screaming, head beating, wall-hitting Ryan. It happens. Everything down to the way you touch him can cause it, but when you've reached that point, you could offer anything and it wouldn't help. It's like he's fallen through to another dimension, and something there is tormenting him to no end. You want to reach through the fear, take his hand, and guide him out. Guide him back to Ryan. The boy who giggles and snuggles, the boy who lets his little brother fall asleep sharing his pillow so he can watch the iPad while big brother plays. The boy who tells himself "Mae-mae tickles" when his baby sister touches him, to calm himself so he won't scare her. I don't know how he gets down to that depth. I can tell you some of the things that can send him there, but I cannot... and this heartbreaking... I cannot tell you why. I can tell you some things to avoid, but not all. Candles, butterflies, flies, washers, dishwashers will send him to hysterics. Crowds are hard, as is waiting. We do our best to not completely avoid any of these things.
This is where I start to look around. This past week, when Ryan was completely apart from together and we were on our way back to the hotel, I kinda went numb. I saw faces pass by. I saw a couple of people obviously staring (okay, way more than a couple), and one even appeared to be laughing at him. The thing that hurts the most is watching my child suffer. The thing that makes it worse? The thought that someone, somewhere, is thinking that this is just a kid pitching a fit. That he has no place here. That he's bothering them, that this behavior belongs somewhere else. I know, I know. I can't spend my whole life worrying about it. I know it happens. It's happened to me in the past, and it happens to people I know with kids like Ryan all the time.
The other night, as I scrolled through the ol' Facebook, I came across this...
If he falls to the floor, kicking and screaming, because there’s no chicken nuggets, it’s just his way of coping. Be patient, you’ll get your turn to order. If she bumps her head and starts to hit herself in the face, don’t stare, it’s her frustration. Mom will handle it, she sees it everyday. If Dad is cutting his child’s food, he’s not treating him like baby. He just doesn’t want his son to choke. If she ignores your child on the playground, she’s not a brat. She’s just not good at social interaction. She would love to play with your child, she just doesn’t know how. He may be to big to sit in the shopping cart, no, he’s not lazy. He wants to run around, but his mom needs to shop. She’s not up for chasing him today. If she has to be carried out screaming, it’s probably because of a meltdown. Be helpful, open the door. Don’t just stare or whisper. No, it’s not because she didn’t get the toy she wanted. If it were only that simple. Don’t talk to her like a child, unless she is one. Don’t yell, she’s not deaf. She may not talk, but she can understand. No, it’s not bad parenting. Discipline won’t help. This is autism, it’s his life. Don’t judge him, he’s not judging you. ♥
It was posted by our cousin, my husband's if you want to split hairs. She has a child on the spectrum as well, and we have loved getting to know each other online! I'm pretty sure it's anonymous, but whoever anonymous is, he or she has my deepest thanks. This is so "us" it's scary. What someone else sees or hears as an annoyance is our whole life. For just a small sliver of time, we all have a choice in this matter as a bystander. We can make it worse, or we can seek to make it better. From my experience, at this point, even the most well-meant advice is not helpful. Chances are we've tried it all at this point, and we just want to get out of there. Dignity is out the door, and at this point, we wish we were too. But whether he's on the other side of the wall or in our arms, we still can't help much. What bystanders are seeing at this point is just the tip of the iceberg.
So what do I do? It's so not fair! It's not his fault! It's not my fault!
Right. It's not. And the problem, so often for me, is that I want everyone to know that we are innocent. We are doing the best we can. But the truth is that I need my patience and understanding for my son. I need to remember... I must work at remembering and knowing... that others' opinions of our outward appearance aren't mine to control. All I can do is perform for the only audience I have. Do what I can, keep going, do my best, and remember that only I know what I have to deal with. I can attempt to explain, but only willing ears will listen. Please don't misunderstand... I love that post and will continue to do my best when I can to educate others about us and folks like us! But as much as I appreciate what it says, I know that no amount of cleverly-worded sayings or pleas will prevent me from experiencing this kind of hurt. I will keep sharing them! I will keep sharing our story! But I will also promise you that I will continue, and more seriously, working toward worrying about Ryan, his feelings, our family, and of course my audience of one.
This Journey is My Own
~Sara Groves
When I stand before the Lord, I'll be standing alone.
This journey is my own.
Still I want man's advice,
and I need man's approval,
but this journey is my own. .
Why would I want to live for man
and pay the highest price?
What would it mean to gain the world, only to lose my life? .
So much of what I do is to make a good impression.
This journey is my own.
So much of what I say is to make myself look better.
This journey is my own. .
I have never felt relief like I feel it right now.
This journey is my own.
'Cause trying to please the world it was breaking me down, it was breaking me down. .
Now I live and I breathe for an audience of one, now I live and I breath for an audience of one.
Now I live and I breathe for an audience of one, 'cause I know this journey is my own. .
Why would I want to live for man
and pay the highest price?
What would it mean to gain the world, only to lose my life? .
So much of what I do is to make a good impression.
This journey is my own.
So much of what I say is to make myself look better.
This journey is my own. You can live for someone else, and it will only bring you pain. I can't even judge myself.
Only the Lord can say, "Well done."
No, I don't know any of those people... I just love this song. :-) YouTube rocks!
Monday, February 6, 2012
Just a Side of Normal... Thanks!
* disclaimer... for those who can't stand a bit o' poo in a story... literally, poo... then you might want to fast forward through the first paragraph or so.
If you're a regular to this lil' corner of cyberspace, you know we are blessed to partake in Baylor University's Autism Resource Center, which provides ABA therapy for a minor fee. We are big Baylor fans anyway, since Eric went there as an undergrad. And well, it's only 50 or so minutes away. Country livin' is pretty sweet, but it takes you away from cool stuff like therapy to a degree. Moving on...
It's no surprise to you regulars also that we spend a lot of time hanging out on campus. Richie, Maelynn and I stay and wait for our big brother to be finished. In that hour we find cool stuff to do, or if it's raining or cold, I bring stuff for the kids to do in the hall. Usually it's pretty quiet up there in the Draper building. For some reason, last Wednesday, there were quite a few folks standing around.
Ryan came bounding out of therapy, and I needed to talk to B, his therapist, for a minute about his session. She's great at sharing how she got him to do things, stuff we can try with him, etc. It's also just nice to talk to someone who totally gets it. Totally. The only problem is that Ryan is quite excited to get to ride the "little elevator" again... never mind that I have to carry his nearly seven year old self on it, with Richie on my front and the stroller in front of him. So for some reason, this particular day, Ryan decided to run down the hall in the opposite direction of where we were, giggling the whole way. After narrowly missing a group of professorial types, he starts drumming on the wall. Then as I ask him to come back, he flops on the floor, starts beating his head and screaming his stimmy words. Not the happy ones. The "I don't want to do what you're saying" ones. Or at least I think that's what it means.
B, being the awesomeness she is, went to retrieve him. Where was I? Trying to keep Richie from running after Ryan. He loves his brother, and everything brother does is cool. Richie generally sticks to my side and behaves. He's not perfect, but who is? But when Ryan enters the picture, all is lost. He is all about being just like brother, screaming and all. He's beginning to understand that he's held to a bit different standard, but in the heat of the moment, his sweet three-year-old heart wants desperately to be like his brother. Ah, adoration. I love that he loves his brother. Just not that he does what his brother does sometimes.
Anyway, I had to let Richie go and help Ryan calm down. Richie got up and walked around the stroller, where Maelynn was being nice and compliant, and climbed up to sit down in the chair beside me. It was then than I looked down and saw it.
No, it couldn't be.
It was. A little, brown rock. And no, it wasn't earth.
Automatically, "Oh, Richie... you didn't... " fell from my lips as I got up to check. Sure enough, there was a nice little gaggle of the rocks on the other side of the stroller. So what do you do? No wipes. I forgot. I had to think of something. If I left them, someone might step on them. So while B kept Ryan and Maelynn, I picked up the poopy pebbles and shuttled them and their maker to the restroom. After practically boiling my hands, I helped Richie on the potty. Let's just say I nearly boiled my hands a couple of times before going back to Ryan.
As Richie and I walked back to the other kids and B, I laughed and said "Dignity? What's that?" followed by "If you ever thought about eating anything off that floor... please reconsider."
It really wasn't the worst thing that could ever happen to anyone. It certainly isn't the worst poop accident ever. And honestly, it's something that could happen to any mom! I know I maybe should be a bit embarrassed at this incident. Initially, I was. Then I was just happy to have a kinda-normal, anyone would get it, regular mom story. No worries about who would say... or be silently considering... that maybe we're just horrible parents who sit and yell at the kids from across the room. Or that we give in to their every whim, and give them whatever they want at the first sign of fussing or tears. Because we don't. It was such a blessing to be able to tell a story about the kids, and embarrassing one at that, and to just be able to tell the part we wanted to tell without attempting to place Autism in a nutshell, in desperate realization that we can only explain the parts of OUR BRAND of Autism that we see... and that no, we don't always know what to do. We are feeling through this too. We get tired of explaining that no, he can't eat with the dishwasher running, and yes, if there is even one fly it will HAVE to be killed. I have no idea why he hates Target, why flies, the washer and the dishwasher send him into shaking hysterics. I cannot explain these things beyond telling you what we see, what we've tried, and how it's worked or failed miserably. I cannot definitively tell you anything about Autism. All I can tell you is what we see. The ways Ryan's life is so hard? I can't even tell you all of those because he can't really tell me. I can tell you, however, that from my perspective, it is excruciating to watch him suffer and to be powerless to do anything but hold him.
But you know what?
I don't have to explain to anyone who has kids why I had to pick up poop off the floor in a public place. Any parent totally gets that.
So I'm a bit behind in sharing it, but last Wednesday and several times since, I've realized that I'm thankful for a normal embarrassing story.
Thanks be to God for my kids, for the sheer amount of exquisite craziness that they bring, and the absolute rapture they inspire as well. And thanks or you, for listening to yet. another. poop. story.
Thursday, January 26, 2012
ZAP
I just did something monumentally stupid. Okay, a string of things escalating in stupidity. Sat on the couch, just to check my email. Wound up on you-book, face-tube, twit-book... you know. Got hung up. Sidetracked. When I realized I needed to get back to work, I stood up to take the computer in the kitchen with me, and the little magnetic charger thingy on the MacBook fell in my coffee. Panic-stricken, I snatched it out of the coffee. Ready for this?
I licked it off.
Just a little zap, but enough to make me feel, well... really dumb.
Then it struck me. Being me, miss neurotypical, I know that incident was just that. An incident. Me worrying I've broken the darned thing and doing something without thinking. I have no fear of the computer, the charger, the couch, coffee, or the dog. I can sit in front of the computer; even hold it on my lap. Eat by it, sleep by it, dress and undress by it if needed, and all without shaking, crying, screaming, thrashing, running around in terror, or slapping and/or holding my ears. My mind processes the fact that I made a mistake, and what caused that little jolt on my tongue.
All the time, we find new things that Ryan associates with things that have happened. It's no big deal sometimes. Since Thanksgiving, he asks every day if we can go on the people train (DART rail in Dallas) on Wednesday. Guess what? We went the week of Thanksgiving... with me telling him all week leading to it... on Wednesday. Every time we go eat at a Wendy's, he thinks we're going to a hotel immediately afterward. Guess what? Last July, we ate at Wendy's before we went to stay in a hotel in San Antonio. The string of these things goes on and on.
No big deal, right? All kids associate things with something, right? No. Most of the time, after the first three or five times he asks, he gets that things are different and they're going to be ok. But that 25% of the time or so that it totally rocks his world into a meltdown that we're not going to the hotel after Wendy's... that's hard. And not all associations are this cute.
Some of them are painfully frustrating for him. For all of us. Some of them are phobia-level, and we cannot for the life of us figure out what in the world caused them or how to help him reconcile and overcome his fear. Over and over, we encounter these things. Over and over. We have to live. We cannot simply avoid all these things. Like flies. One fly in the kitchen and he won't eat. He holds his ears, shaking, sometimes screaming, sometimes crying.
"DADDY BANG THE SHOO-FLY!!!"
We go to great lengths to kill flies at our house. And moths, but to tell the truth I hate moths too. Flying jerks, we call 'em.
I'm convinced it's the buzzing he can't stand for the flies. Then there's the washer and dishwasher. He will not eat with one of them running. If he has to come in the kitchen, he holds his ears and darts through like a little ninja.
Then there's haircuts. Oh man, the haircuts. Simply horrific. And candles. Oh dear. Shaking, crying, screaming. The absolute worst part of all of this is watching him suffer. I can give up candles at home, but I cannot make sure there are never candles burning anywhere we go. Almost as frustrating is the (albeit usually well-meant) "have you tried?" I can assure you that we've tried and tried... I've even tried letting him cut his own hair. The candle thing has improved to a degree, but he still isn't crazy about them.
A lot of these things, one at a time, are a pain but could be dealt with easily. Most times when folks say "oh, that's every kid" they see one of these things. A very mild form of one of these things. But it's not "every kid." The "every kid" comment isn't as helpful as you might think. It's pretty frustrating. Okay, it's hurtful. It feels like you're saying, "What's the big deal? What are you whining about? I could do this with both hands tied behind my back. Just calm down. You're overreacting." And "Just a little discipline" and "Just make him" are beyond infuriating, not to mention tragically misinformed.
To be honest, most people either don't comment or, especially at church, just pat us on the back and smile. It's so refreshing and encouraging when people show that they trust our parenting in this way. No pressure, no suggestions, no demands, no panic about trying to fix it for us... just brotherly, Christlike, amazingly simple abiding with us.
That's the first step of ministering to a family with Autism. Hug our hearts. Just smile, accept that we're truly doing our best, even though your whole being screams "I COULD FIX THIS! I could do better!" Because you can't. Even if you can... is showing that you can and I can't helpful? Edifying? Encouraging? Loving? Would you really want someone else to say to you what you're about to say to that struggling parent? Know that we have spent hours, days, weeks, months, even years studying and researching and listening to doctors and therapists and people who claim to know best. We don't need to be zapped by your glare or burned by your words. It zaps us enough to have to leave the candles off our other childrens' birthday cakes if we want brother to be there. It burns us enough to watch as he grabs his hair and screams "NO!" when we walk in the room with scissors... not even shears for haircuts.
Trust me. We get it. We're noisy. We make some of you uncomfortable. You're not more uncomfortable than he is. Want to help?
Trust us.
Smile at us.
Tell us what a great kid he is.
Let us talk to you for a minute, realizing that we'll have to stop mid-sentence about ten times to answer a question, say "WAFFLES" with him, or make sure he's not wandering into traffic.
Invite us to have coffee... or lunch... or to the park... and understand if we can't.
Talk directly to Ryan. He can hear. He can think and feel. He just isn't YET able to express himself in the same way we do.
You don't have to pressure us to "take a break" or feel pressured to take the kids for the evening so we can have a break. We love our kids, we love our life.
If you truly love our kids and want to offer, that's awesome! Understand if we can't accept. It's as hard if not harder to leave them with someone new than to take them with.
Pat Ryan on the back.
Pat Maelynn and Richie on the back. They're great kids, too.
Emails, calls, notes in the mail, and certainly texts are welcome too.
And you really want to know how you can help?
Find another family with Autism. Or a family with a special need. Or just one that isn't exactly like you. Figure out how they feel love. Show the love of Christ to them. Shake off your knee-jerk to judge... we all have it... and reach out. Outside your comfort zone.
You never know. You might save a life.
And next time you see me, you're welcome to pick on me about licking off the charger. That was really stupid. :-)
Thanks be to God, who gives us love and shows us how to use it.
I licked it off.
Just a little zap, but enough to make me feel, well... really dumb.
Then it struck me. Being me, miss neurotypical, I know that incident was just that. An incident. Me worrying I've broken the darned thing and doing something without thinking. I have no fear of the computer, the charger, the couch, coffee, or the dog. I can sit in front of the computer; even hold it on my lap. Eat by it, sleep by it, dress and undress by it if needed, and all without shaking, crying, screaming, thrashing, running around in terror, or slapping and/or holding my ears. My mind processes the fact that I made a mistake, and what caused that little jolt on my tongue.
All the time, we find new things that Ryan associates with things that have happened. It's no big deal sometimes. Since Thanksgiving, he asks every day if we can go on the people train (DART rail in Dallas) on Wednesday. Guess what? We went the week of Thanksgiving... with me telling him all week leading to it... on Wednesday. Every time we go eat at a Wendy's, he thinks we're going to a hotel immediately afterward. Guess what? Last July, we ate at Wendy's before we went to stay in a hotel in San Antonio. The string of these things goes on and on.
No big deal, right? All kids associate things with something, right? No. Most of the time, after the first three or five times he asks, he gets that things are different and they're going to be ok. But that 25% of the time or so that it totally rocks his world into a meltdown that we're not going to the hotel after Wendy's... that's hard. And not all associations are this cute.
Some of them are painfully frustrating for him. For all of us. Some of them are phobia-level, and we cannot for the life of us figure out what in the world caused them or how to help him reconcile and overcome his fear. Over and over, we encounter these things. Over and over. We have to live. We cannot simply avoid all these things. Like flies. One fly in the kitchen and he won't eat. He holds his ears, shaking, sometimes screaming, sometimes crying.
"DADDY BANG THE SHOO-FLY!!!"
We go to great lengths to kill flies at our house. And moths, but to tell the truth I hate moths too. Flying jerks, we call 'em.
I'm convinced it's the buzzing he can't stand for the flies. Then there's the washer and dishwasher. He will not eat with one of them running. If he has to come in the kitchen, he holds his ears and darts through like a little ninja.
Then there's haircuts. Oh man, the haircuts. Simply horrific. And candles. Oh dear. Shaking, crying, screaming. The absolute worst part of all of this is watching him suffer. I can give up candles at home, but I cannot make sure there are never candles burning anywhere we go. Almost as frustrating is the (albeit usually well-meant) "have you tried?" I can assure you that we've tried and tried... I've even tried letting him cut his own hair. The candle thing has improved to a degree, but he still isn't crazy about them.
A lot of these things, one at a time, are a pain but could be dealt with easily. Most times when folks say "oh, that's every kid" they see one of these things. A very mild form of one of these things. But it's not "every kid." The "every kid" comment isn't as helpful as you might think. It's pretty frustrating. Okay, it's hurtful. It feels like you're saying, "What's the big deal? What are you whining about? I could do this with both hands tied behind my back. Just calm down. You're overreacting." And "Just a little discipline" and "Just make him" are beyond infuriating, not to mention tragically misinformed.
To be honest, most people either don't comment or, especially at church, just pat us on the back and smile. It's so refreshing and encouraging when people show that they trust our parenting in this way. No pressure, no suggestions, no demands, no panic about trying to fix it for us... just brotherly, Christlike, amazingly simple abiding with us.
That's the first step of ministering to a family with Autism. Hug our hearts. Just smile, accept that we're truly doing our best, even though your whole being screams "I COULD FIX THIS! I could do better!" Because you can't. Even if you can... is showing that you can and I can't helpful? Edifying? Encouraging? Loving? Would you really want someone else to say to you what you're about to say to that struggling parent? Know that we have spent hours, days, weeks, months, even years studying and researching and listening to doctors and therapists and people who claim to know best. We don't need to be zapped by your glare or burned by your words. It zaps us enough to have to leave the candles off our other childrens' birthday cakes if we want brother to be there. It burns us enough to watch as he grabs his hair and screams "NO!" when we walk in the room with scissors... not even shears for haircuts.
Trust me. We get it. We're noisy. We make some of you uncomfortable. You're not more uncomfortable than he is. Want to help?
Trust us.
Smile at us.
Tell us what a great kid he is.
Let us talk to you for a minute, realizing that we'll have to stop mid-sentence about ten times to answer a question, say "WAFFLES" with him, or make sure he's not wandering into traffic.
Invite us to have coffee... or lunch... or to the park... and understand if we can't.
Talk directly to Ryan. He can hear. He can think and feel. He just isn't YET able to express himself in the same way we do.
You don't have to pressure us to "take a break" or feel pressured to take the kids for the evening so we can have a break. We love our kids, we love our life.
If you truly love our kids and want to offer, that's awesome! Understand if we can't accept. It's as hard if not harder to leave them with someone new than to take them with.
Pat Ryan on the back.
Pat Maelynn and Richie on the back. They're great kids, too.
Emails, calls, notes in the mail, and certainly texts are welcome too.
And you really want to know how you can help?
Find another family with Autism. Or a family with a special need. Or just one that isn't exactly like you. Figure out how they feel love. Show the love of Christ to them. Shake off your knee-jerk to judge... we all have it... and reach out. Outside your comfort zone.
You never know. You might save a life.
And next time you see me, you're welcome to pick on me about licking off the charger. That was really stupid. :-)
For you were called to freedom, brothers. Only do not use your freedom as an opportunity for the flesh, but through love serve one another. For the whole law is fulfilled in one word: "You shall love your neighbor as yourself." But if you bite and devour one another, watch out that you are not consumed by one another. -Galatians 5:13-15
Thanks be to God, who gives us love and shows us how to use it.
Tuesday, January 24, 2012
Forecast...
It's supposed to rain today. And tomorrow. Then Thursday, it's supposed to be sunny. Yesterday, the weather website said it was a 60% chance. This morning, it was 80%. Now, it's 80% today, 100% tomorrow. They do their best, The Weather Channel, and I'm convinced that if anyone knows they do.
Thing is, right now it's pretty sunny out with just a few stray clouds. Guess that 20% chance of sun is working its magic.
Yeah, that's right. If there's a chance it could rain, there's also a chance it could be sunny. The experts work to tell us what's going to happen... or might happen... so that we may prepare accordingly. How we react to that forecast is up to us. We can pretend it doesn't exist, they don't know what they're talking about. But if you're planning an outdoor event, the "lalala, I can't hear you" approach to weather prediction is more than foolish.
Say you're planning an outdoor birthday party. They say it'll rain... oh... a good 80% chance on Monday. Then every day the prediction changes a bit here and there. What do you do? Plan for rain? Plan for no rain? Or maybe no rain but with a back up plan?
This is somewhat how I see our Ryan's diagnosis. It would be foolish to suggest that the experts are completely misinformed and there is no reason to do anything differently than we do with our other kids. I could just hire a baby sitter and go out for a date and let the chips fall where they may. I could take him out of therapy, because those trips are pretty tiring. They wear on the budget, the other kids, the van, and to a degree on Ryan. I could give up on our church attendance. It's hard to make that part of routine too. God is in charge, right? And if He's bigger than Autism, bigger than it all... even church... I should be able to do what's easy and it'll all fall in our laps, if He really loves us.
Or we could go the other way, allowing the statistics of children with severe classic autism as adults to frighten us to the point where our faith is paralyzed. We could meditate on the issues, the struggles, the things he can't do. We could, out of concern for his potential disappointment, just start telling him about how the likelihood of him participating in band, social things, excelling academically is terribly low. We could start preparing him that statistics show he'll not live on his own, that he'll have a hard time in college if he goes at all. We could wake up every day reminding ourselves of these things, too.
But you see, the forecast is just that. It's an expert's educated prediction of what will happen. To take this as gospel... as the decided end to the chapters and books of our lives... would be tragic. On the other hand, to ignore them and not prepare and work toward goals set by ourselves and people such as these would be worse than foolish. In this circumstance, I believe it's neglect.
So what do we do?
We wake up every day and do the things we can do. Parenting is interesting, and a ton of work- no matter what their challenges. We focus on their strengths, encourage, correct, hug, and train. We tell them how great they are, how handsome, beautiful, amazing, precious they are. We pray for them, we dream for them. We celebrate the wonderful times, the times their sheer presence in our lives takes our breath away and brings a lump to our throats. When things get rough, when our hearts are heavy for their behavior, fears, anxiety, choices, or when that lump in our throats is brought by the fact that we wish we could take away the unfairness of it all, we keep loving. We hang onto them and cry with them. We correct them, taking a mommy time out when needed.
I wish I could promise that the hard things will end, and that sunshine will be all you see after this one thing passes. I wish there was a cure for all the illnesses, disorders, syndromes, and disabilities. But more than that, I pray that we all... no matter what we face... will grasp hold of God's promises for us and our kids. That we will keep rising, working, fighting the beautiful fight, whatever yours is, with grace and integrity. That we will remember that, since we cannot see one another's struggles, we must choose to offer mercy and love, especially in the moment-to-moment of life, especially when no one is looking. And know that God sees, hears, and will do the things we cannot to the completion of his plan.
I pray not that the rain would end, or the rain would come... but that we will all learn to bask in the sun and dance in the rain.
Thing is, right now it's pretty sunny out with just a few stray clouds. Guess that 20% chance of sun is working its magic.
Yeah, that's right. If there's a chance it could rain, there's also a chance it could be sunny. The experts work to tell us what's going to happen... or might happen... so that we may prepare accordingly. How we react to that forecast is up to us. We can pretend it doesn't exist, they don't know what they're talking about. But if you're planning an outdoor event, the "lalala, I can't hear you" approach to weather prediction is more than foolish.
Say you're planning an outdoor birthday party. They say it'll rain... oh... a good 80% chance on Monday. Then every day the prediction changes a bit here and there. What do you do? Plan for rain? Plan for no rain? Or maybe no rain but with a back up plan?
This is somewhat how I see our Ryan's diagnosis. It would be foolish to suggest that the experts are completely misinformed and there is no reason to do anything differently than we do with our other kids. I could just hire a baby sitter and go out for a date and let the chips fall where they may. I could take him out of therapy, because those trips are pretty tiring. They wear on the budget, the other kids, the van, and to a degree on Ryan. I could give up on our church attendance. It's hard to make that part of routine too. God is in charge, right? And if He's bigger than Autism, bigger than it all... even church... I should be able to do what's easy and it'll all fall in our laps, if He really loves us.
Or we could go the other way, allowing the statistics of children with severe classic autism as adults to frighten us to the point where our faith is paralyzed. We could meditate on the issues, the struggles, the things he can't do. We could, out of concern for his potential disappointment, just start telling him about how the likelihood of him participating in band, social things, excelling academically is terribly low. We could start preparing him that statistics show he'll not live on his own, that he'll have a hard time in college if he goes at all. We could wake up every day reminding ourselves of these things, too.
But you see, the forecast is just that. It's an expert's educated prediction of what will happen. To take this as gospel... as the decided end to the chapters and books of our lives... would be tragic. On the other hand, to ignore them and not prepare and work toward goals set by ourselves and people such as these would be worse than foolish. In this circumstance, I believe it's neglect.
So what do we do?
We wake up every day and do the things we can do. Parenting is interesting, and a ton of work- no matter what their challenges. We focus on their strengths, encourage, correct, hug, and train. We tell them how great they are, how handsome, beautiful, amazing, precious they are. We pray for them, we dream for them. We celebrate the wonderful times, the times their sheer presence in our lives takes our breath away and brings a lump to our throats. When things get rough, when our hearts are heavy for their behavior, fears, anxiety, choices, or when that lump in our throats is brought by the fact that we wish we could take away the unfairness of it all, we keep loving. We hang onto them and cry with them. We correct them, taking a mommy time out when needed.
I wish I could promise that the hard things will end, and that sunshine will be all you see after this one thing passes. I wish there was a cure for all the illnesses, disorders, syndromes, and disabilities. But more than that, I pray that we all... no matter what we face... will grasp hold of God's promises for us and our kids. That we will keep rising, working, fighting the beautiful fight, whatever yours is, with grace and integrity. That we will remember that, since we cannot see one another's struggles, we must choose to offer mercy and love, especially in the moment-to-moment of life, especially when no one is looking. And know that God sees, hears, and will do the things we cannot to the completion of his plan.
I pray not that the rain would end, or the rain would come... but that we will all learn to bask in the sun and dance in the rain.
Wednesday, December 14, 2011
A Boy Like Me
"Was he a boy like me?Did he bounce on daddy’s knee?Did he play games to make his mother smile?As I place the final piece inside the manger sceneI wonder if he was a boy like me."
Ryan's kindergarten Christmas program was last night. We loaded the van with all the kids after dinner, which in itself was confusing for the star. I promised him a treat after the program, tried to talk through as much of it as I knew about (the process, not the program), again social story-ing my head off. Once we reached the school we had to walk a while from where we parked, and the whole way to the door Ryan was jumpy-stimmy-tickled. I mean WIRED for sound! So excited to be there.
And I was so relieved.
The crowd was huge inside. I took Ryan to the music room, where one of his many adult friends at school met him at the door. S, we'll call her, smiled and greeted Ryan, and I went back to find Eric and the littles. We had a bit of a wait, which was interesting with little miss wiggles in the umbrella stroller.
Now, I was proud of Ryan! He got dressed in a package costume, and although he wouldn't go on stage until the end, he was there. And dressed! It took a long time to find him, since he wasn't on stage, but when I did, he took my breath. My baby... my little boy. The more I thought about it, the more I realized how huge that was for him. There were other children who had speaking and standing parts who were a bit nervous, too. I wish I could say this was the first time I teared up. You know, welled up, choked up, got teary-eyed... but it wasn't. There's something about Christmas... especially where kids are involved... that makes me lose it.
So as I desperately tried to snap pictures (which were all terrible), I had to dig in my purse for kleenex. As I pawed awkwardly through my purse with one hand, I finally understood. Every time I performed in any way, whether is was choir, concert band, marching band, whatever, Nanny, Mom, and usually Grandad were red-eyed, sans makeup, and picking kleenex off their faces every time we got through.
Finally, for me, it makes sense. Of all the things we go through with special needs, all the extra time as a band family, all the challenges my family has had in the past few years as we cared for our sick and mourned our losses, you know what makes me choke up the fastest? It's a combination. The wonderful things of my past holidays that I get to pass to my children, and the difference in their childhoods and mine. I watch their sweet faces brighten when they see the lights, teach them the love of Jesus and why we give, and every time I hear my little princess bubble over with a whispery, breathy "oh WOW!", my heart overflows with gratitude for everything. But ultimately, it's amazement and wonder at the workings of God's perfect plan.
He used and uses things all the time that look imperfect... even useless... to us. Have you recently dug through Jesus' family tree? Do you realize how God chose to send his only Son to the world? All of my children were born in a hospital. I know people who won't even consider having their kids in any hospital that doesn't have an NICU. All that's fine, but consider that environment, then consider a barn. Oh, you're in advanced labor? Here's some clean hay. We won't even go into how socially forbidden it was for his mother to be pregnant and just betrothed. She could have... and probably would have... usually been stoned to death upon the world finding out. And it fascinates me to no end to think of how Jesus may have been as a kid. He had to potty train, eat, learn manners, and grow up in this world... but all without sin. If you can wrap your mind completely around that, I'd like to borrow your brain.
This Christmas season, I choke up when I hear so much as "Jingle Bells." But it's not the song, and it's not even the fact that my kids' childhood experiences are so much more stable than mine. It's not that it's my baby on the stage. It's the wonder of it all. It's the fact that Jesus was a boy like Richie. Like Ryan. He played and giggled, made his mother laugh. I'm so grateful that I have children to watch and help grow. And it's just too amazing, wonderful, mind-bending... that He was a boy.
Why in the world a boy? Little boys are great but they're hardly the warrior-like king Israel expected. He came to Bethlehem on a donkey, in the womb of a woman being looked at as an adulterer in the community. With a father who was likely being looked at through the same lens. Jesus could have been born to a Queen. He could have been born in their present-day version of one of the state of the art birthing rooms of our day. But no... God isn't interested in our perfect, wrapped up with a bow versions of how we think life should be. He's interested in nothing less than His best for us. He's interested in us trusting Him and learning to understand that we shouldn't panic if something doesn't go according to plan. We can't see what He can see. We don't know what He knows. I can speculate, study, and search and ask questions, but I will never fully understand His choices. Every year I see a new facet of this situation... the Prince of Heaven in an unmarried mortal womb. Brought into the world not just how all other people are, but among the animals in the floor of a barn. The perfect picture of humility and grace. Of love and caring, sacrifice and giving. Jesus came to save us, absolutely and without question. But I also believe He came to feel our pain. Our frustration. Our excitement. Our happy, contented laughs with friends. Our love for our family. I'm willing to bet He also saw the temptation to keep up with the Joneses, and I know He saw, through growing up and living among us, broken relationship. I know He saw how hard it is to be different. To be the one or two moms in the audience drying tears simply because their boy was dressed as the gift that he is.
Ryan made it through the performance, and as I made my way to he and S through the crowd, I saw him jumping and stimming when he saw me, hands flapping with all his might. I think he was proud of himself, and just like every other kid, he wanted me to be proud. As he jumped into my arms, S told me that he kept asking to go to Mommy or Daddy. I hugged him tight, told him how very proud I was, and we went to find Daddy. And I've never been more happy to sit in line for ice cream, or more tickled to hand him his prize. And as he finished his ice cream, he stimmed a bit, looked at me, and said "Christmas!" Then, as I was wondering what he was going to mention about getting a gift, he said "It's about Jesus." And I'm so very grateful that it is. That He was a boy like Ryan, Richie... and me.
"He saw a boy like meHe bounced him on his kneeThey played some games that made his mother smileAs you place the final piece inside your manger sceneThey wondered at this boy They gazed upon this giftIn a boy like me"
Friday, December 9, 2011
Truth from the Island of Misfit Toys
This morning, after taking Ryan to school and removing coats, etc. I walked in the living room and started "Rudolph the Red-Nosed Reindeer" for the kids. You know, the old stop-motion one. I had planned to turn it on, then once the kids were happily playing and watching, I'd go sort laundry. Then this three-year-old boy with curly blonde hair looked up at me. He completely ruined my plans with those big, blue eyes. So I sat down on the couch, computer to the right, Richie snuggled on my lap, thinking I'd do some quick email checking while we watched. I opened the notification of a new blog post from "A Diary of a Mom".
It seems that we live in a world where not just other people think different is wrong. It seems that we live in a world where parents kill their children brutally to avoid being "ruined". You can click HERE if you'd like to read the post I read. I must warn you, it will break your heart. It rocked me. It shook me. It broke my heart.
It called me to action.
I come here every now and again, and in my opinion not enough, not to impress you with what little writing skills and creativity God has given. I come here to offer hope. I come here to explain. To write my own little message in a bottle to not just help others who do not understand what it's like to live being different, but to offer some comfort... to share my experiences, good and bad... with parents who have kids like ours. The hope is that my little offering will comfort someone, make them feel a bit less alone and isolated even for a moment. I have been there.
I have felt the pain of throwing out all your expectations... some you didn't realize you had. I fight every day in different degrees to enjoy these three babies and this life. Folks, in case you hadn't noticed, I don't know anyone who has it easy. Those we think should be the happiest, by earthly standards, are often the most broken. Just click on over to the entertainment section on any news source. You'll see pain in staggering amounts. Broken relationships, illness, death, bankruptcy, greed, anger, hatred... no matter how it's packaged or Hollywood-ified it's still pain.
Please don't think I'm trying to lessen the difficulty of those of us who live on the spectrum. I'm not. I live there too. But honestly, my littles are different, too! I feel like at times I've given birth to mountain goats, banshees, and future MMA fighters. Where did they get this stuff? I mean, Eric and I are... well, we're pleasantly boring! Then, at the risk of sounding egocentric, look at me. I've always been different... a bit out there, a bit off the mark. Never one too concerned with what everyone's wearing, doing, being, watching, etc., probably to my own social detriment. I'm content in jeans and a t-shirt in the summer, a long-sleeve t-shirt in the winter. I'm one of those annoying people who wouldn't go see "Titanic" because everyone else was. Socially clueless by choice, maybe? Anyway, I've had people try to kinda rescue me from my awkwardness. In some ways those people have helped a lot! In others, it just hurt to be told I was so different that I needed someone's help to be acceptable.
But even when I thought I'd conquered the need to be like everyone else... my "look at me, God, I took care of that... aren't you proud" moment ended last spring. The magical time when that baby boy is a little boy comes with a price when you have special needs. All of a sudden he's bigger. Harder to handle. When the rest of the kids are running around playing during adult meeting time at church, he's still in need of the assistance you'd give a 2 year old. So I found myself on the playground with my son, entering a crossroads.
"But I just want to be in church, God. That's a good want. That's what You want for me to have!"
*shakes fist at sky*
No, sweet one... that's what you thought I wanted. I really just want you to be open to ME. My will, not yours. Even when your will looks like it should be right. I want you to learn to wallow in the joy I have given to you, not your disappointments.
That short-version of the answer I received over months of agony was life-changing. Last spring was the beginning of stripping away everything, rethinking what we believe, what we want our kids to know, and placing back the things we need. Along with that was scrubbing all the preconceived ideas from our hearts and minds.
Which ones, you ask?
Kids should be potty-trained by at least age four.
Kids should be able to sit in church, color, and make a minimum amount of noise.
I should be in church whenever I can, signing up for everything offered to truly be a good Christian.
In order to have a great marriage, we should have a date at least once a month.
Said date should involve a sitter, dinner, a movie, or something similar.
The list goes on and on. There are things we've had to rid ourselves of as preconceived expecations that I cannot put into words. This means that when Ryan is making gutteral waa-waa-waa stimmy noises, giggling like there's no tomorrow, really acting... well... weird, I have to join him. Stop a minute, see his sweet baby face, the joy in his eyes, and though I don't understand it, what will it hurt to giggle with him? Repeat after him, even? In the appropriate setting, what's the problem with that? Nothing. What's wrong with making our son feel loved and accepted in his own home?
Embrace it. Embrace the different. Help him understand the world. Help the world understand him. What's harder about him than the other kids? Learning how he loves. How he feels love. This morning, when I repeated his stimmy noises after him, I wish you could see his face. His eyes brightened. His smile was huge. He clumsily fell into me with complete abandon, wrapping his sweet arms around my neck, humming. I embraced him, in his world, and maybe just this once... but he embraced me right back.
In a moment we were back to the futility that seems to be getting ready for school. But I was more refreshed, more ready for it, because I took a moment to feel his heart. To see him as a flawed, clumsy, gangly human just like me. Doing the best he can, whether his best is good enough by worldly standards or not.
So here I sit again, hoping and praying that God will bless these words, flawed though they are. That someone might find hope... be inspired to keep going through one more meltdown, one more trip to the hospital, one more disapproving glance by the others around them. I've felt them too. I've spent a lot of time in my house, wishing I could shut the doors and protect us from getting hurt again. I've felt the pain of different. I've been angry because what I want isn't so bad... just for my son to have peace and be able to communicate, to know danger and run from it, to understand some social nuances like not laughing at crying and when to not run up and hug random people.
Yes, what I wanted or didn't even realize I wanted sounded good. It was hard to let go of. But friends, I stand here on the other side, promising that it's better over here. No, it's not always easy. Yes, we still have meltdowns. I still want to help us overcome. I still want there to be a prevention for Autism, for there to be better treatments and more understanding. But I have to live here. I know it's not a popular idea, but you can choose happiness. You can choose to get up and try again.
If you can do nothing else, you can share your story.
As I finished reading that post on Diary, I glanced back up to see our familiar red-nosed friend enduring suffering at the hands of his father, who just wanted him to be like everyone else. To cover up his red nose, because comfort isn't near as important as self-respect. Shortly after seeing the other reindeer making fun of Rudolph and seeing him banished from the reindeer games, Richie's sweet voice floated to my heart as he turned to me and said "That's sad, Mommy."
Dear Lord, please help us all to embrace our kids' red-noses. Help us all to see how amazing they are. How needed they are in this world. Help us to reach out and offer hope to those who struggle with how different they or their kids are. Because it isn't easy, Lord. Please help us. Please "create in me a clean heart, O God, and renew a right spirit within me." (Psalm 51:10)
Thanks be to God, the giver of all good things!
It seems that we live in a world where not just other people think different is wrong. It seems that we live in a world where parents kill their children brutally to avoid being "ruined". You can click HERE if you'd like to read the post I read. I must warn you, it will break your heart. It rocked me. It shook me. It broke my heart.
It called me to action.
I come here every now and again, and in my opinion not enough, not to impress you with what little writing skills and creativity God has given. I come here to offer hope. I come here to explain. To write my own little message in a bottle to not just help others who do not understand what it's like to live being different, but to offer some comfort... to share my experiences, good and bad... with parents who have kids like ours. The hope is that my little offering will comfort someone, make them feel a bit less alone and isolated even for a moment. I have been there.
I have felt the pain of throwing out all your expectations... some you didn't realize you had. I fight every day in different degrees to enjoy these three babies and this life. Folks, in case you hadn't noticed, I don't know anyone who has it easy. Those we think should be the happiest, by earthly standards, are often the most broken. Just click on over to the entertainment section on any news source. You'll see pain in staggering amounts. Broken relationships, illness, death, bankruptcy, greed, anger, hatred... no matter how it's packaged or Hollywood-ified it's still pain.
Please don't think I'm trying to lessen the difficulty of those of us who live on the spectrum. I'm not. I live there too. But honestly, my littles are different, too! I feel like at times I've given birth to mountain goats, banshees, and future MMA fighters. Where did they get this stuff? I mean, Eric and I are... well, we're pleasantly boring! Then, at the risk of sounding egocentric, look at me. I've always been different... a bit out there, a bit off the mark. Never one too concerned with what everyone's wearing, doing, being, watching, etc., probably to my own social detriment. I'm content in jeans and a t-shirt in the summer, a long-sleeve t-shirt in the winter. I'm one of those annoying people who wouldn't go see "Titanic" because everyone else was. Socially clueless by choice, maybe? Anyway, I've had people try to kinda rescue me from my awkwardness. In some ways those people have helped a lot! In others, it just hurt to be told I was so different that I needed someone's help to be acceptable.
But even when I thought I'd conquered the need to be like everyone else... my "look at me, God, I took care of that... aren't you proud" moment ended last spring. The magical time when that baby boy is a little boy comes with a price when you have special needs. All of a sudden he's bigger. Harder to handle. When the rest of the kids are running around playing during adult meeting time at church, he's still in need of the assistance you'd give a 2 year old. So I found myself on the playground with my son, entering a crossroads.
"But I just want to be in church, God. That's a good want. That's what You want for me to have!"
*shakes fist at sky*
No, sweet one... that's what you thought I wanted. I really just want you to be open to ME. My will, not yours. Even when your will looks like it should be right. I want you to learn to wallow in the joy I have given to you, not your disappointments.
That short-version of the answer I received over months of agony was life-changing. Last spring was the beginning of stripping away everything, rethinking what we believe, what we want our kids to know, and placing back the things we need. Along with that was scrubbing all the preconceived ideas from our hearts and minds.
Which ones, you ask?
Kids should be potty-trained by at least age four.
Kids should be able to sit in church, color, and make a minimum amount of noise.
I should be in church whenever I can, signing up for everything offered to truly be a good Christian.
In order to have a great marriage, we should have a date at least once a month.
Said date should involve a sitter, dinner, a movie, or something similar.
The list goes on and on. There are things we've had to rid ourselves of as preconceived expecations that I cannot put into words. This means that when Ryan is making gutteral waa-waa-waa stimmy noises, giggling like there's no tomorrow, really acting... well... weird, I have to join him. Stop a minute, see his sweet baby face, the joy in his eyes, and though I don't understand it, what will it hurt to giggle with him? Repeat after him, even? In the appropriate setting, what's the problem with that? Nothing. What's wrong with making our son feel loved and accepted in his own home?
Embrace it. Embrace the different. Help him understand the world. Help the world understand him. What's harder about him than the other kids? Learning how he loves. How he feels love. This morning, when I repeated his stimmy noises after him, I wish you could see his face. His eyes brightened. His smile was huge. He clumsily fell into me with complete abandon, wrapping his sweet arms around my neck, humming. I embraced him, in his world, and maybe just this once... but he embraced me right back.
In a moment we were back to the futility that seems to be getting ready for school. But I was more refreshed, more ready for it, because I took a moment to feel his heart. To see him as a flawed, clumsy, gangly human just like me. Doing the best he can, whether his best is good enough by worldly standards or not.
So here I sit again, hoping and praying that God will bless these words, flawed though they are. That someone might find hope... be inspired to keep going through one more meltdown, one more trip to the hospital, one more disapproving glance by the others around them. I've felt them too. I've spent a lot of time in my house, wishing I could shut the doors and protect us from getting hurt again. I've felt the pain of different. I've been angry because what I want isn't so bad... just for my son to have peace and be able to communicate, to know danger and run from it, to understand some social nuances like not laughing at crying and when to not run up and hug random people.
Yes, what I wanted or didn't even realize I wanted sounded good. It was hard to let go of. But friends, I stand here on the other side, promising that it's better over here. No, it's not always easy. Yes, we still have meltdowns. I still want to help us overcome. I still want there to be a prevention for Autism, for there to be better treatments and more understanding. But I have to live here. I know it's not a popular idea, but you can choose happiness. You can choose to get up and try again.
If you can do nothing else, you can share your story.
As I finished reading that post on Diary, I glanced back up to see our familiar red-nosed friend enduring suffering at the hands of his father, who just wanted him to be like everyone else. To cover up his red nose, because comfort isn't near as important as self-respect. Shortly after seeing the other reindeer making fun of Rudolph and seeing him banished from the reindeer games, Richie's sweet voice floated to my heart as he turned to me and said "That's sad, Mommy."
Dear Lord, please help us all to embrace our kids' red-noses. Help us all to see how amazing they are. How needed they are in this world. Help us to reach out and offer hope to those who struggle with how different they or their kids are. Because it isn't easy, Lord. Please help us. Please "create in me a clean heart, O God, and renew a right spirit within me." (Psalm 51:10)
Thanks be to God, the giver of all good things!
Friday, October 28, 2011
Quittin' time, part 2
Sorry I made you wait for the rest of this. I keep thinking I'm going to have more time, and every time I think that something comes up. When will I learn? The bad news is my best friend is sick tonight so what I was hoping I'd be doing isn't going to happen. But the good news is I have the rest of the day (and I mean until like 1:00 tomorrow morning) to get the stuff done I need to do today. So here I am.
If you're wondering about part 1, click here. Now that we're all on the same page...
So after I left bible study, I reminded myself at times audibly that God is in control. There's always a reason. Always. Even when we don't know what it is, there's a reason. I went home, changed the littles' diapers and stuff, got what we needed and went to the school to get Ryan. I was almost sure that since his aid wasn't with him, I'd have to get the kids out and go in and get him, since I pick him up in the middle of the school day. Imagine my surprise to see his teacher bringing him out. When he got to the van, it went something like this:
Me: So how'd he do?
L: We're good.
Me: We're good? Oh, he had a good day?
L: No, we're GOOD.
Me: Um... you mean we don't need to hire someone else good?
L: I'd like to try it.
That last comment and the look on L's face I will remember for eternity.
She went on to describe how well he'd done since lunch the day before, when his aid had resigned. Not one meltdown. Little fits, but no meltdowns. Being the mommy I am, I had to make sure he was safe. Satisfied with her answer, I put my official mommy-seal on the deal and we agreed.
RYAN IS IN KINDERGARTEN WITHOUT AN AID!
Full inclusion. All day. Only someone to help with music and p.e.
After searching the van for and reattaching my chin, we headed to therapy. Soon as I was out of the school zone I called Eric. We both teared up. I think we both said "FOR REAL?!?!" about ten times. The only other thing that we could manage to utter was Praise God.
It has now been a week and a half. If Ryan's folder was still here, I'd show you the happy faces and "Great Day" markings on his behavior chart. I am still in utter disbelief.
I'm in disbelief that he's doing this! We are so proud of him! We are so proud of his teacher! We are so proud to be in a school district that makes the paperwork fit the kid instead of the kid fit the paperwork! I mean, he still needs some support. But when you're in a place where all the teachers actually really do care about the kids... all of the kids, not just the easy ones... kids like Ryan get a shot. They get a real shot. And when they fall, others pick them up, dust them off, and give them another shot. I cannot tell you how grateful I am for God's providence in all this. For the teachers, administration, the special programs department, his teacher form the last three years who still checks in on him, the aid who knew for whatever reason it was time to go... all of this, we are so grateful.
I don't know why God chose to give us all He's given us. I could begin listing it all, but don't think blogger would allow me the storage capacity. Just looking around in our family, just seeing our three kids smiling at us, is more than enough. We're healthy, my husband and I love each other, we still have my mother, his parents, and his Nana, we have our sisters and their husbands and families, and we have extended family. We have a fabulous church, wonderful friends, and a roof over our heads.
As King David said in 2 Samuel 7:18, "Who am I, O Lord God, and what is my house, that you have brought me thus far?"
Who am I, Lord? Who are we, that you have brought us this far?!
Thanks and much praise be to God!
If you're wondering about part 1, click here. Now that we're all on the same page...
So after I left bible study, I reminded myself at times audibly that God is in control. There's always a reason. Always. Even when we don't know what it is, there's a reason. I went home, changed the littles' diapers and stuff, got what we needed and went to the school to get Ryan. I was almost sure that since his aid wasn't with him, I'd have to get the kids out and go in and get him, since I pick him up in the middle of the school day. Imagine my surprise to see his teacher bringing him out. When he got to the van, it went something like this:
Me: So how'd he do?
L: We're good.
Me: We're good? Oh, he had a good day?
L: No, we're GOOD.
Me: Um... you mean we don't need to hire someone else good?
L: I'd like to try it.
That last comment and the look on L's face I will remember for eternity.
She went on to describe how well he'd done since lunch the day before, when his aid had resigned. Not one meltdown. Little fits, but no meltdowns. Being the mommy I am, I had to make sure he was safe. Satisfied with her answer, I put my official mommy-seal on the deal and we agreed.
RYAN IS IN KINDERGARTEN WITHOUT AN AID!
Full inclusion. All day. Only someone to help with music and p.e.
After searching the van for and reattaching my chin, we headed to therapy. Soon as I was out of the school zone I called Eric. We both teared up. I think we both said "FOR REAL?!?!" about ten times. The only other thing that we could manage to utter was Praise God.
It has now been a week and a half. If Ryan's folder was still here, I'd show you the happy faces and "Great Day" markings on his behavior chart. I am still in utter disbelief.
I'm in disbelief that he's doing this! We are so proud of him! We are so proud of his teacher! We are so proud to be in a school district that makes the paperwork fit the kid instead of the kid fit the paperwork! I mean, he still needs some support. But when you're in a place where all the teachers actually really do care about the kids... all of the kids, not just the easy ones... kids like Ryan get a shot. They get a real shot. And when they fall, others pick them up, dust them off, and give them another shot. I cannot tell you how grateful I am for God's providence in all this. For the teachers, administration, the special programs department, his teacher form the last three years who still checks in on him, the aid who knew for whatever reason it was time to go... all of this, we are so grateful.
I don't know why God chose to give us all He's given us. I could begin listing it all, but don't think blogger would allow me the storage capacity. Just looking around in our family, just seeing our three kids smiling at us, is more than enough. We're healthy, my husband and I love each other, we still have my mother, his parents, and his Nana, we have our sisters and their husbands and families, and we have extended family. We have a fabulous church, wonderful friends, and a roof over our heads.
As King David said in 2 Samuel 7:18, "Who am I, O Lord God, and what is my house, that you have brought me thus far?"
Who am I, Lord? Who are we, that you have brought us this far?!
Thanks and much praise be to God!
Tuesday, October 25, 2011
Quittin' time... part 1
Aaaand I'm alive. This fall (if you can call it that in central Texas) has been fabulous, just very busy. Somewhere between my crafty-time, trying to get the house decorated and settled for real (I'm so not a decorator), keeping up with driving to therapy, church, all the stuff that's important to our family and still managing to be able to keep the daily stuff like dishes and laundry done is keeping us so busy. I won't even go into how exciting football marching season is for us... well, let's just say we're busy but happy.
Somewhere in all the excitement last week, I was taking time for one of my favorite mama treats, our ladies' bible study here in town. Discussion had just ended and we had just settled into our chairs after singing for a few minutes when my phone rang. I picked up my phone and tried to make my way out of the room, my hunched-over shadow taking off poor Beth Moore's legs on the screen. Sneaking into the church library I answered. It was our diagnostician.
If you've been in our situation or something similar, you know how your heart can drop when it's not time for a yearly ARD meeting and the diagnostician's number is on the screen. Usually it's not great news when she's contacting me, and I had that sinking feeling in my gut that says there's something up.
Hate it when I'm right.
She was gentle and sweet and calm, but there's no good way to deliver it. "Mrs. Senzig, I just wanted to let you know that as of yesterday at lunch *Ryan's aid* has resigned." After that it was just kinda emotional freefall. I don't generally go nuts over these things. I manage to sing my version of that Veggie classic "God is Bigger than the Boogieman" in my heart, and it's eventually all okay. I managed to be all business on the phone, using my version of what we affectionately called Nanny's "Tupperware Queen" voice, but I was dying. Seriously? She really decided she couldn't do it? I was surprised, frustrated, upset, sad, nervous... and just flat hurt that dealing with my kid wasn't possible. Not at her. I am so thankful that she knew her limits. I like her, I really do. I know she cared about him, I know she was good to him and wanted the best for him. But a lack of training is hard to overcome when you're thrown into the deep end of the Autism pool on your first day. She had managed to rally and we were all proud of her for that, but in the end it just wasn't something she could keep doing. And that's okay. Really. We're thankful for the time she spent with him, the effort she spent, the heart she spent.
So after she promised they would keep looking for an aid, told me that I'd need to bring Ryan just a little later to school so that he'd be with his class when he showed up (long story), and assured me that he was safe with a temp aid for the next two days I hung up and went back to class. I did pretty well, listening and keeping up with Miss Beth on the screen. Then I told my friend Melanie, who was right beside me, who then suggested I tell the rest of the ladies so they could be praying. Actually, she volunteered to do it for me, and (being me) I said I'd manage. Right as I explained that I knew exactly what was hard and why because she basically was doing my job, I told them I could understand why she wanted to quit, because sometimes I do too. And as those words left my lips, I crumbled into a pile.
If you've never experienced a group of people who sincerely love you around you, crying with you and praying for you, I hope you get the chance. Attention is not my favorite thing, especially with a tear and snot-soaked face, blubbering with all I've got. But there I was, humanity all over my face, exhausted, enrobed in the hands and hugs of women of faith.
They like to call us "Warrior Moms" at times. Most days I wouldn't call myself that. I don't deserve that. I'm not petitioning anyone for the cause, not knocking on doors or breaking down huge walls in the area of advocacy. I'm not one of the scientists searching for a prevention or a behaviorist studying a new way to help these sweet ones figure out this crazy world. I'm just a mom.
Just a mom.
Just a mom who loves her children and wants the... no, God's... best for them. Just a mom who would do anything needed for her kids. Just another mom who keeps the sword and shield up on one side with the game face on, and usually manages to polish the shield and smile with the other hand in a somewhat futile attempt to keep our family going. Fighting Autism's symptoms while at the same time attempting to help our family learn to act in a way that is palatable to society as a whole. All this without losing who we are as a married couple, plus laundry, dishes, social planning (anything social takes a ton of it), potty training, keeping up with all the usual homemaker stuff, and what? I'm supposed to look like a human when I step out of the house?
Yep, just a mom.
And there are millions of us. Being the warriors our family needs. But for every time someone's called us "supermom" there are about a hundred times we feel inadequate. Frustrated. Hopeless. Tired. Weary. But that moment of losing it... that moment where the cracks in the armor show and all the frustration, fear, and weariness pour from the floodgates... is the very moment when God shows who He is. It's when we get to see that those people who say hello and ask how we are every Wednesday really do care how we are. It's that little reminder that although people may never really get it, there are those who are cheering for us, whether or not they get the ins and outs of our struggles. In our weakness, in that proof of our humanity, the world gets a little glimpse into what God is made of. That He can do this through me? ME? Weak, tired, horrible at confrontation, recovering people-pleaser me? Me who can't stop being selfish and at times lazy and impatient, sometimes all at the same time?
Yup. In my weaknesses, He is strong. He will not leave me stranded, even in my darkest times. ESPECIALLY not in my darkest times.
Deep inside this Warrior Mom's armor is a scared, weary child who is tired and needs a hug. And even when you wear as much armor as Autism Warrior Moms, sometimes it's that feather on the 2-ton barbell that sends us crashing to through the floor. Sometimes something catches us so off guard that the armor falls and we need friends to help pick it up and put it back on... and sometimes hold it up for us. Just for a little while. Because even when your whole life and philosophy for living is grounded in the belief that God is sovereign, life can just be too much.
The story doesn't end there... stay tuned for part 2. In the meantime, have a listen. :-)
The Warrior is a Child
~Twila Paris
Lately I've been winning battles left and right
But even winners can get wounded in the fight
People say that I'm amazing
Strong beyond my years
But they don't see inside of me
I'm hiding all the tears
They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and cry for just a while
'Cause deep inside this armor
The warrior is a child
Unafraid because His armor is the best
But even soldiers need a quiet place to rest
People say that I'm amazing
Never face retreat
But they don't see the enemies
That lay me at His feet
They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and and cry for just a while
'Cause deep inside this armor
the warrior is a child
They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and look up for a smile
'Cause deep inside this armor
Deep inside this armor
Deep inside this armor
The Warrior is a Child
Somewhere in all the excitement last week, I was taking time for one of my favorite mama treats, our ladies' bible study here in town. Discussion had just ended and we had just settled into our chairs after singing for a few minutes when my phone rang. I picked up my phone and tried to make my way out of the room, my hunched-over shadow taking off poor Beth Moore's legs on the screen. Sneaking into the church library I answered. It was our diagnostician.
If you've been in our situation or something similar, you know how your heart can drop when it's not time for a yearly ARD meeting and the diagnostician's number is on the screen. Usually it's not great news when she's contacting me, and I had that sinking feeling in my gut that says there's something up.
Hate it when I'm right.
She was gentle and sweet and calm, but there's no good way to deliver it. "Mrs. Senzig, I just wanted to let you know that as of yesterday at lunch *Ryan's aid* has resigned." After that it was just kinda emotional freefall. I don't generally go nuts over these things. I manage to sing my version of that Veggie classic "God is Bigger than the Boogieman" in my heart, and it's eventually all okay. I managed to be all business on the phone, using my version of what we affectionately called Nanny's "Tupperware Queen" voice, but I was dying. Seriously? She really decided she couldn't do it? I was surprised, frustrated, upset, sad, nervous... and just flat hurt that dealing with my kid wasn't possible. Not at her. I am so thankful that she knew her limits. I like her, I really do. I know she cared about him, I know she was good to him and wanted the best for him. But a lack of training is hard to overcome when you're thrown into the deep end of the Autism pool on your first day. She had managed to rally and we were all proud of her for that, but in the end it just wasn't something she could keep doing. And that's okay. Really. We're thankful for the time she spent with him, the effort she spent, the heart she spent.
So after she promised they would keep looking for an aid, told me that I'd need to bring Ryan just a little later to school so that he'd be with his class when he showed up (long story), and assured me that he was safe with a temp aid for the next two days I hung up and went back to class. I did pretty well, listening and keeping up with Miss Beth on the screen. Then I told my friend Melanie, who was right beside me, who then suggested I tell the rest of the ladies so they could be praying. Actually, she volunteered to do it for me, and (being me) I said I'd manage. Right as I explained that I knew exactly what was hard and why because she basically was doing my job, I told them I could understand why she wanted to quit, because sometimes I do too. And as those words left my lips, I crumbled into a pile.
If you've never experienced a group of people who sincerely love you around you, crying with you and praying for you, I hope you get the chance. Attention is not my favorite thing, especially with a tear and snot-soaked face, blubbering with all I've got. But there I was, humanity all over my face, exhausted, enrobed in the hands and hugs of women of faith.
They like to call us "Warrior Moms" at times. Most days I wouldn't call myself that. I don't deserve that. I'm not petitioning anyone for the cause, not knocking on doors or breaking down huge walls in the area of advocacy. I'm not one of the scientists searching for a prevention or a behaviorist studying a new way to help these sweet ones figure out this crazy world. I'm just a mom.
Just a mom.
Just a mom who loves her children and wants the... no, God's... best for them. Just a mom who would do anything needed for her kids. Just another mom who keeps the sword and shield up on one side with the game face on, and usually manages to polish the shield and smile with the other hand in a somewhat futile attempt to keep our family going. Fighting Autism's symptoms while at the same time attempting to help our family learn to act in a way that is palatable to society as a whole. All this without losing who we are as a married couple, plus laundry, dishes, social planning (anything social takes a ton of it), potty training, keeping up with all the usual homemaker stuff, and what? I'm supposed to look like a human when I step out of the house?
Yep, just a mom.
And there are millions of us. Being the warriors our family needs. But for every time someone's called us "supermom" there are about a hundred times we feel inadequate. Frustrated. Hopeless. Tired. Weary. But that moment of losing it... that moment where the cracks in the armor show and all the frustration, fear, and weariness pour from the floodgates... is the very moment when God shows who He is. It's when we get to see that those people who say hello and ask how we are every Wednesday really do care how we are. It's that little reminder that although people may never really get it, there are those who are cheering for us, whether or not they get the ins and outs of our struggles. In our weakness, in that proof of our humanity, the world gets a little glimpse into what God is made of. That He can do this through me? ME? Weak, tired, horrible at confrontation, recovering people-pleaser me? Me who can't stop being selfish and at times lazy and impatient, sometimes all at the same time?
Yup. In my weaknesses, He is strong. He will not leave me stranded, even in my darkest times. ESPECIALLY not in my darkest times.
Deep inside this Warrior Mom's armor is a scared, weary child who is tired and needs a hug. And even when you wear as much armor as Autism Warrior Moms, sometimes it's that feather on the 2-ton barbell that sends us crashing to through the floor. Sometimes something catches us so off guard that the armor falls and we need friends to help pick it up and put it back on... and sometimes hold it up for us. Just for a little while. Because even when your whole life and philosophy for living is grounded in the belief that God is sovereign, life can just be too much.
The story doesn't end there... stay tuned for part 2. In the meantime, have a listen. :-)
The Warrior is a Child
~Twila Paris
Lately I've been winning battles left and right
But even winners can get wounded in the fight
People say that I'm amazing
Strong beyond my years
But they don't see inside of me
I'm hiding all the tears
They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and cry for just a while
'Cause deep inside this armor
The warrior is a child
Unafraid because His armor is the best
But even soldiers need a quiet place to rest
People say that I'm amazing
Never face retreat
But they don't see the enemies
That lay me at His feet
They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and and cry for just a while
'Cause deep inside this armor
the warrior is a child
They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and look up for a smile
'Cause deep inside this armor
Deep inside this armor
Deep inside this armor
The Warrior is a Child
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