Here's one more of the posts from ChosenFamilies.org. Love, love, love this.....
Permission to Cry
October 26, 2011 By Joan 1 Comment
I was flying home Monday, and trying to catch up on my Bible study homework before the plane landed. I can’t defend the theology of “catching up” on spiritual homework….
But somewhere at 30,000 ft. Jesus met me in my seat, as I sat between the window and a stranger.
I was reading John 11, the story of Lazarus dying, his sisters weeping, sending for Jesus, and Jesus choosing not to come…so “that you may believe.” Believe what? His disciples were missing something. I wondered in my cramped seat, what truth was I missing? (When you’re sitting in seats obviously not designed for human beings WITH knees, it’s easy to wonder what else you’re missing.)
I have loved this story for a long time, for many reasons. But certain phrases kept diverting my attention (away from my “regularly scheduled program” of questions). “Jesus…was deeply moved in spirit, and was troubled…Jesus wept…Jesus therefore again being deeply moved within…”. I was struck again by the truth that perfect communion with God His Father did not protect Jesus from being deeply moved (and we’re not talking “deeply moved with joy” here.) If you live with hidden disabilities, you’ve been “deeply moved” too. And just to be clear: not even perfect communion with God protects us from deep painful emotions.
In fact, I feel like Tevye, the father from Fiddler on the Roof. “On the one hand,” I feel many DEEP emotions as I walk out life with my loved ones who struggle with hidden disabilities. “On the other hand,” practically speaking, I often set aside my own emotions, in order to fill my role as an Emotional First Responder. Working in the ICU, there was no time to cry while doing CPR. Work first, sob later.
But the problem is I am NOT a nurse working a shift and going home. My work is now IN my home…and sometimes I set aside my emotions for too long, as if they are not as important to Jesus, simply because I am not the one in crisis…which leads to Emotional Flatlands. Jesus didn’t want me to go flat.
His own example gave me permission to feel it all – to be DEEPLY MOVED. Jesus, my High Priest, FEELS! I can’t explain it well, but that makes it “well with my soul.”
Furthermore, (I just can’t leave this part out) Martha said, “Lord, if You had been here, my brother would not have died.” I get this, too. I have hoped, as both sisters did, for Jesus to “arrive” on the scene of my life, in time to prevent the death of something precious to me. I have wept over dead and buried dreams. My soul has said to Him, like Martha, “If You had been here (with me), _____ (list of bad things) wouldn’t have happened. I know that much about You and Your power.”
In response, Jesus reasoned with Martha…talked with her. Sometimes He reasons with me, helping me organize my disheveled thoughts, completing my flawed theology…and I’m comforted.
BUT Mary said the exact same thing as her sister, yet Jesus did NOT try to reason with her. He wept with Mary — even though He KNEW He was going to solve her pain within minutes. Why stop and weep with her? Why waste that time – why not pick her up, run to the tomb, raise her brother, and end everyone’s tears? I’m stunned it was more important to Jesus that Mary know her pain hurt Him, than it was to rush to raise Lazarus. He did the resurrecting, to be sure, but after he did the weeping. That awes me.
And I got the message, once again. He weeps with me. He takes that kind of time. Even though a miracle is coming. Cry now, we’ll talk later.
Every mama with hidden disabilities in her home needs time for her own emotions (even though miracles are coming)….
Jesus tenderly met me at 30,000 ft. to tell me again, right there on United Airlines, my tears matter to Him. And I believe Him.
Believing,
Joan
Showing posts with label Autism. Show all posts
Showing posts with label Autism. Show all posts
Thursday, October 27, 2011
Chosen Families
This is from one of my favorite blogs written by various authors on "hidden disabilities". It's called ChosenFamilies.org. Check it out if you get the chance. God just keeps sending these straight to me.....
Oh No You Didn’t
October 27, 2011 By Sarah 1 Comment
The wind’s seeping and moaning through the cracks in our poorly insulated bedroom windows today as I sit at my computer, gnawing a knuckle. I’m getting myself all worked up again. I’m prone to these little mini-paroxysms, you see. By nature, I’m a pacifist, a mercy-giver and a chicken, so when the time is right to be angry, I don’t say anything. When the time is past however, I’m a veritable colossus of articulate and righteous indignation. I’m really good at getting mad AFTER the fact.
I can’t think of a single instance when my rebuttal was timely delivered, save for that one time when my staunchly left-leaning atheist of a boss – the one who preached equality and social reform – called me a “fascist” for going to a Christian college, whereupon I managed to retort, “Oh wait. Aren’t YOU the one who’s supposed to be open-minded?”
You can high five me later.
But now, I’m angry thinking of all the self-righteous comments and looks my Noah’s received. To be fair, our burden is in some ways lighter than most. As a boy with high functioning autism, Noah may seem just a little “odd.” That he flaps, or chews his clothing or talks your ear off about Super Mario Brothers. His verbal ability and his self-sufficiency often belie his disability.
From another vantage, this actually makes our burden heavier than most. Because you’d never notice his difference from a distance, you might look down your nose when, in the middle of his flag football game, he halts a play to have a complete and total meltdown in the middle of the field. Or, you might snort a little out of disgust when you’re standing behind him in the checkout line and he remarks in full voice that the woman in front of him “sure is fat!” Remember that scene from “Terms of Endearment” when Emma doesn’t have enough to pay for her groceries? Yeah. It’s EXACTLY that painful.
You know what else bugs me? “There’s nothing wrong with him.” Why? Because you can’t see a missing limb? Because he’s not in a wheelchair? My choice responses? (1) “Nothing wrong with him? That’s because we pay a lot of therapists a lot of money to make sure he doesn’t gag at dinner because there’s a candle on the table”; (2) “Nothing wrong with him? Good. Then I’ll send him to your house the next time he has a meltdown. And while you’re at it, do you mind teaching him to use a belt?” Or, my favorite, (3) “Nothing wrong with him? Well, duh! He’s perfect the way God made him!”
I know Jesus experienced anger (Matthew 21:11-13). I know He was enraged that the temple was being used to buy and sell – making a holy place nothing more than a common street bazaar. But before I silently fist pump my own angry, internal tirades, I have to remember that Christ said, “It is written…my house will be called a house of prayer.” In other words, “you should have known better, guys. You had the book!”
When I get the supercilious looks and the incredulous comments, I need to take a breath and remind myself that they can’t SEE what Noah has, and they don’t KNOW its manifestations. They are ignorant – not just in the Maury-Povich-chair-flipping- “Oh no you didn’t!” sense of the word, but they literally “know no better.” They can’t “see” his Asperger’s like I can.
That means, much as I would like to verbally eviscerate them, I need to practice the mercy I like to preach, keep my trap shut and smile. After all, God loves them just as much as He loves Noah and me.
If you’re reading this and you’ve experienced that familiar prick of rage, here’s my knowing glance from across the cyber-distance, telling you that I’ve been there, too. We just have to forgive these poor blokes for their ignorance, because they just don’t know.
Not yet.
- Sarah
Oh No You Didn’t
October 27, 2011 By Sarah 1 Comment
The wind’s seeping and moaning through the cracks in our poorly insulated bedroom windows today as I sit at my computer, gnawing a knuckle. I’m getting myself all worked up again. I’m prone to these little mini-paroxysms, you see. By nature, I’m a pacifist, a mercy-giver and a chicken, so when the time is right to be angry, I don’t say anything. When the time is past however, I’m a veritable colossus of articulate and righteous indignation. I’m really good at getting mad AFTER the fact.
I can’t think of a single instance when my rebuttal was timely delivered, save for that one time when my staunchly left-leaning atheist of a boss – the one who preached equality and social reform – called me a “fascist” for going to a Christian college, whereupon I managed to retort, “Oh wait. Aren’t YOU the one who’s supposed to be open-minded?”
You can high five me later.
But now, I’m angry thinking of all the self-righteous comments and looks my Noah’s received. To be fair, our burden is in some ways lighter than most. As a boy with high functioning autism, Noah may seem just a little “odd.” That he flaps, or chews his clothing or talks your ear off about Super Mario Brothers. His verbal ability and his self-sufficiency often belie his disability.
From another vantage, this actually makes our burden heavier than most. Because you’d never notice his difference from a distance, you might look down your nose when, in the middle of his flag football game, he halts a play to have a complete and total meltdown in the middle of the field. Or, you might snort a little out of disgust when you’re standing behind him in the checkout line and he remarks in full voice that the woman in front of him “sure is fat!” Remember that scene from “Terms of Endearment” when Emma doesn’t have enough to pay for her groceries? Yeah. It’s EXACTLY that painful.
You know what else bugs me? “There’s nothing wrong with him.” Why? Because you can’t see a missing limb? Because he’s not in a wheelchair? My choice responses? (1) “Nothing wrong with him? That’s because we pay a lot of therapists a lot of money to make sure he doesn’t gag at dinner because there’s a candle on the table”; (2) “Nothing wrong with him? Good. Then I’ll send him to your house the next time he has a meltdown. And while you’re at it, do you mind teaching him to use a belt?” Or, my favorite, (3) “Nothing wrong with him? Well, duh! He’s perfect the way God made him!”
I know Jesus experienced anger (Matthew 21:11-13). I know He was enraged that the temple was being used to buy and sell – making a holy place nothing more than a common street bazaar. But before I silently fist pump my own angry, internal tirades, I have to remember that Christ said, “It is written…my house will be called a house of prayer.” In other words, “you should have known better, guys. You had the book!”
When I get the supercilious looks and the incredulous comments, I need to take a breath and remind myself that they can’t SEE what Noah has, and they don’t KNOW its manifestations. They are ignorant – not just in the Maury-Povich-chair-flipping- “Oh no you didn’t!” sense of the word, but they literally “know no better.” They can’t “see” his Asperger’s like I can.
That means, much as I would like to verbally eviscerate them, I need to practice the mercy I like to preach, keep my trap shut and smile. After all, God loves them just as much as He loves Noah and me.
If you’re reading this and you’ve experienced that familiar prick of rage, here’s my knowing glance from across the cyber-distance, telling you that I’ve been there, too. We just have to forgive these poor blokes for their ignorance, because they just don’t know.
Not yet.
- Sarah
Wednesday, October 26, 2011
Broken Heart
This week I've found myself extra emotional. I've broken down in tears on several occasions, something I don't tend to do around other people. Nothing huge is happening, there are just several smaller things that aren't working and they are taking a toll on my heart.
The main issue right now is my son at school. He is having a really hard time keeping himself and his emotions in check. He's lashing out at the other students, sassing his teacher and generally getting into lots of trouble. At first it made me mad. I marched myself into his classroom (I do teach right across the hall) and laid down the law to him. It worked..for the moment. Trouble was, the next day he was right back at it.
So between myself, his teachers and his therapists we set goals and rewards and stepped up our game. Didn't work. Might have even backfired a bit because once he realized he had lost his reward, he did not even try for the rest of the day. You can see where this is going....downhill fast!
So I'm researching, I'm setting up group meetings, I'm talking with G and trying my best to keep myself together. But inside I am crying for my baby. He is not a mean kid. He has a kind heart. He honestly loves his friends. But he is becoming "that kid". The one who kids won't sit next to because he hurts them. The one who kids don't want to play with because he gets too rough. The one whose name is on the board all the time. "That kid".
The other night during our bedtime rituals, G broke down in tears just sobbing. He held me so tight and said "Mama, I had such a hard day!" My heart broke into a million pieces. He knows he isn't doing the right thing but we are struggling with how to teach him. How to reach him in the moment. I honestly don't have any more tricks in my bag.
Today I was looking though some books and I came across one that I had tucked away and forgotten all about. It's called "Finding God in Autism" and it's a devotional geared for parents with autistic kids. Doesn't God know just when to have you 'come across' something that you need? Instead of reading one devotional, I read several days' worth, each spoke something to me. One though, really stuck out.
It begins with Isaiah 61:1 "He sent me to bind up the broken hearted."
Here is the devotional for that day.....
Bind up means to tie up, secure, to hold up or unite. So today we know Christ was sent from heaven to earth to hold us up. He came to unite us with him. It is good news that Jesus was sent to bind up the broken hearted. You and I had our hearts broken when we received our children's diagnosis. He brings us relief. Turning to Jesus is what starts the process of putting the pieces together.
Over the last seven years I have learned that autism is a battle. A battle that needs to be turned over to God. I need to hang onto God and let him lead...God always leads to victory. When I feel weary I am taking on too much of the battle myself; I need to step aside and turn it back over to God. Let Him fight for me. I do not need to spend my time fighting the enemy or see seeking victory. I need to spend more of my time seeking Christ. As I bind myself to His presence and trust God...he will carry our son to victory.
We need to let God heal any brokenness that is still in our hearts. When we allow Jesus to do what God sent Him to do, gather us up and mend our brokenness, faith in God returns.
You and I are trusting God to heal our children in our lifetime. That requires faith. We will be blessed when God chooses to reward our faithfulness. Our children will reap the benefits of what we practiced and dared to believe.
Remember, this battle of autism is really for God to battle. God is raising up many leaders to discover answers about autism. God is leading many top notched doctors, scientists and researchers to answers and truths about this disorder.God is assembling brilliant people to take the heat, dig trenches and be bold in searching for a cure.
As God lifts us up an unites us all, we will not only see the healing begin, we will feel it. God is holding us up with His nail scarred hands. I am sure you and I would just like God to heal our children through an instant miracle. But God is choosing most of us to walk the walk, talk the talk and learn the lesson of "walk by faith".
Today, spend some time memorizing the above verse. Think about how far God has already brought you and how your personal character is being challenged, molded and refined. God showed you His love by sending you His son to bind up your broken heart.
Thank you Father for sending Your Son to bind up my broken heart. Thank you for loving me enough to send your own Son to die for me...I'll not forget the sacrifice. I know your heart must have been broken too.
The main issue right now is my son at school. He is having a really hard time keeping himself and his emotions in check. He's lashing out at the other students, sassing his teacher and generally getting into lots of trouble. At first it made me mad. I marched myself into his classroom (I do teach right across the hall) and laid down the law to him. It worked..for the moment. Trouble was, the next day he was right back at it.
So between myself, his teachers and his therapists we set goals and rewards and stepped up our game. Didn't work. Might have even backfired a bit because once he realized he had lost his reward, he did not even try for the rest of the day. You can see where this is going....downhill fast!
So I'm researching, I'm setting up group meetings, I'm talking with G and trying my best to keep myself together. But inside I am crying for my baby. He is not a mean kid. He has a kind heart. He honestly loves his friends. But he is becoming "that kid". The one who kids won't sit next to because he hurts them. The one who kids don't want to play with because he gets too rough. The one whose name is on the board all the time. "That kid".
The other night during our bedtime rituals, G broke down in tears just sobbing. He held me so tight and said "Mama, I had such a hard day!" My heart broke into a million pieces. He knows he isn't doing the right thing but we are struggling with how to teach him. How to reach him in the moment. I honestly don't have any more tricks in my bag.
Today I was looking though some books and I came across one that I had tucked away and forgotten all about. It's called "Finding God in Autism" and it's a devotional geared for parents with autistic kids. Doesn't God know just when to have you 'come across' something that you need? Instead of reading one devotional, I read several days' worth, each spoke something to me. One though, really stuck out.
It begins with Isaiah 61:1 "He sent me to bind up the broken hearted."
Here is the devotional for that day.....
Bind up means to tie up, secure, to hold up or unite. So today we know Christ was sent from heaven to earth to hold us up. He came to unite us with him. It is good news that Jesus was sent to bind up the broken hearted. You and I had our hearts broken when we received our children's diagnosis. He brings us relief. Turning to Jesus is what starts the process of putting the pieces together.
Over the last seven years I have learned that autism is a battle. A battle that needs to be turned over to God. I need to hang onto God and let him lead...God always leads to victory. When I feel weary I am taking on too much of the battle myself; I need to step aside and turn it back over to God. Let Him fight for me. I do not need to spend my time fighting the enemy or see seeking victory. I need to spend more of my time seeking Christ. As I bind myself to His presence and trust God...he will carry our son to victory.
We need to let God heal any brokenness that is still in our hearts. When we allow Jesus to do what God sent Him to do, gather us up and mend our brokenness, faith in God returns.
You and I are trusting God to heal our children in our lifetime. That requires faith. We will be blessed when God chooses to reward our faithfulness. Our children will reap the benefits of what we practiced and dared to believe.
Remember, this battle of autism is really for God to battle. God is raising up many leaders to discover answers about autism. God is leading many top notched doctors, scientists and researchers to answers and truths about this disorder.God is assembling brilliant people to take the heat, dig trenches and be bold in searching for a cure.
As God lifts us up an unites us all, we will not only see the healing begin, we will feel it. God is holding us up with His nail scarred hands. I am sure you and I would just like God to heal our children through an instant miracle. But God is choosing most of us to walk the walk, talk the talk and learn the lesson of "walk by faith".
Today, spend some time memorizing the above verse. Think about how far God has already brought you and how your personal character is being challenged, molded and refined. God showed you His love by sending you His son to bind up your broken heart.
Thank you Father for sending Your Son to bind up my broken heart. Thank you for loving me enough to send your own Son to die for me...I'll not forget the sacrifice. I know your heart must have been broken too.
Sunday, April 3, 2011
Hope
It's funny sometimes how my mind works. My son has been growing and changing, like all kids do, and somehow I started thinking that maybe he really doesn't have autism. Many people have told me that if I hadn't told them, they wouldn't have realized it. He behaves fairly typically. I let my mind go to that place of "what if....."
Then I went to a conference on autism in Tennessee. G's developmental pediatrician was the keynote speaker and they had many interesting topics like Occupational Therapy, ABA and Social Skills. It was a good day. I learned a lot and came home with ideas on how to help G as well as students in my class.
But probably the idea that hit home the most was that G definitely has autism. He fits the characteristics many professionals described. He does many of the things other parents talked about. He is the face of autism.
Instead of finding myself saddened or disappointed, I felt such hope. There was talk about the disturbing side of autism, but there was so much more emphasis on what can be done. There were positive stories told; success stories. Not just success in the autism world, not just in the earthly world but also in the spiritual world.
One professional briefly suggested that we check out a program called Mornings with Brant. It is apparently a morning radio show in the Chattanooga area. While I can't access the program here, I did visit the web site morningswithbrant.com . Brant is a happily married man of 20 years, successful Christian radio show host and has Asperger's. After exploring this website, I can't even begin to tell you the way I felt. The words seem inadequate but what comes to mind most is hope. Real hope.
If Brant can hold a job, have a wife and live for the Lord--while having Asperger's, then G can too! My sweet little three (almost four) year old can have it all. I know some may look at those three things and ask if that is "having it all". But I can't imagine being more successful than that. Having a job you love, that reaches people for God and furthers His kingdom, having a wife you love and that loves you in return and letting the world know that God provided it....wow, that's the life I want for G.
Thank you Father for providing hope for me, rejuvenating my spirit and most of all making it possible for my son to have it all!
Saturday, March 19, 2011
I'm not sure either
When I write, I usually write what God has laid on my heart. There is usually some lesson I've learned or example God has shown me that I don't want to forget, so I try to log it here. Tonight I'm laying here in bed, laptop open, beside my sleeping little guy, just thinking over the past few weeks events.
For G, school life is getting harder but hopefully better. I've enlisted the help of an ABA therapist for three mornings per week. He has been unable to stop himself from grabbing other children, their work or their belongings. He might seem mad or giggle as if it is the funniest thing on earth. His teachers and I were at the end of our bag of tricks, so we solicited some outside help.
The therapists themselves are fantastic. He has one lady come on Monday and Wednesday and then another to come on Tuesday. Then his OT visits him on Friday and his speech therapist comes on Thursday. Jam packed schedule huh? The problem lies in that we aren't completely cohesive on the plan of attack. They are all looking to me, but really..if I had the answers, would I have called them in the first place? I know I am here as his advocate, his only advocate. But if I make the wrong choice am I screwing him up? It's lots of pressure, let me tell you.
I love this boy with all of my heart. He is changing and growing every day and it is always something new and different. One day he is the sweetest, most loving child ever...then the next day his evil twin appears and he isn't happy for a moment! Are all children this way or is this one of the underlying issues with autism? For every one thing I've learned about autism, there are a hundred other things I've yet to figure out.
So if you are reading this and trying to figure out what this post is about....well I'm not sure either. I'm at a place where I'm looking forward to Spring Break, time off, slowing down while at the same time I'm regretting that time is passing so quickly. Sometimes G wakes in the morning looking like he has grown overnight. This motherhood thing is full of decisions, potholes, mountain tops and whirlwinds. But boy is it awesome! I can't imagine my life without this precious guy in it.
One thing I will ask of you....if my name or face (or that of G) comes before you, will you pray for us? Guidance, wisdom, deliverance...we need it all.
For G, school life is getting harder but hopefully better. I've enlisted the help of an ABA therapist for three mornings per week. He has been unable to stop himself from grabbing other children, their work or their belongings. He might seem mad or giggle as if it is the funniest thing on earth. His teachers and I were at the end of our bag of tricks, so we solicited some outside help.
The therapists themselves are fantastic. He has one lady come on Monday and Wednesday and then another to come on Tuesday. Then his OT visits him on Friday and his speech therapist comes on Thursday. Jam packed schedule huh? The problem lies in that we aren't completely cohesive on the plan of attack. They are all looking to me, but really..if I had the answers, would I have called them in the first place? I know I am here as his advocate, his only advocate. But if I make the wrong choice am I screwing him up? It's lots of pressure, let me tell you.
I love this boy with all of my heart. He is changing and growing every day and it is always something new and different. One day he is the sweetest, most loving child ever...then the next day his evil twin appears and he isn't happy for a moment! Are all children this way or is this one of the underlying issues with autism? For every one thing I've learned about autism, there are a hundred other things I've yet to figure out.
So if you are reading this and trying to figure out what this post is about....well I'm not sure either. I'm at a place where I'm looking forward to Spring Break, time off, slowing down while at the same time I'm regretting that time is passing so quickly. Sometimes G wakes in the morning looking like he has grown overnight. This motherhood thing is full of decisions, potholes, mountain tops and whirlwinds. But boy is it awesome! I can't imagine my life without this precious guy in it.
One thing I will ask of you....if my name or face (or that of G) comes before you, will you pray for us? Guidance, wisdom, deliverance...we need it all.
Saturday, July 3, 2010
Article
My sweet friend M sent me a message on Facebook the other day and told me I should get the July 2010 issue of Ladies' Home Journal. There was an article in it about a mom of an Autistic child (called "Accepting Ethan"). If you are the parent of a special needs child, it's a good read. It's got some really good points.
The article is basically about the mom hoping for a cure for her son's Autism so long and hard that she lost sight of other things. She decided one day to focus on the progress he was making, instead of setting goal after goal after goal in the hopes he would one day not have the disease anymore.
I could really relate here. I have prayed every day for G's Autism to be gone. I don't think it's fair for him, or any child, to have extra difficulties placed on them. Life is hard enough. While reading this article won't stop my prayer (because I serve a God who is the Great and Mighty Healer and He can choose to heal G at any time!!!!) it will help me to look more at his progress.
My guy can dress himself, mostly without help. He can brush his teeth, although he'd rather skip it. He can peddle a tricycle. He is learning to read three-letter words. He smiles and laughs daily, and I hear "I love you forever, I'll like you for always, As long as I'm living, my Mommy you'll be" more times in a day than I can count. He is doing great.
To quote the article, " I've also learned that at a certain point fighting the autism begins to feel more like fighting your child". OUCH! I'm guilty of days of pushing....just one more try...maybe he will get it this time...ok, then just one more time...next time for sure. G pushing back, trying to tell me in his own way that he has had enough.
I'm not advocating that we give up. Not at all. G personally needs repetition. It is how he learns. But I have found myself pushing harder than might have been necessary. The guilt seems to follow you if you push too hard or not hard enough.
But it also says, "....I do wish I'd understood sooner the battle was not an all-or-nothing one. I wish I'd learned earlier to see and celebrate the small victories when they came instead of holding my breath for bigger ones."
We are fortunate. We are seeing victories. Probably more than many others. And I am grateful.
For today, I will thank God for the victory...large and small. I will pray that there is a cure for this disease and others like it. But also that I keep a proper perspective for G's achievements. He is God's creation after all. And He has loaned me His wonderful creation while we are here on earth. Thank you, Father God. I am honored.
The article is basically about the mom hoping for a cure for her son's Autism so long and hard that she lost sight of other things. She decided one day to focus on the progress he was making, instead of setting goal after goal after goal in the hopes he would one day not have the disease anymore.
I could really relate here. I have prayed every day for G's Autism to be gone. I don't think it's fair for him, or any child, to have extra difficulties placed on them. Life is hard enough. While reading this article won't stop my prayer (because I serve a God who is the Great and Mighty Healer and He can choose to heal G at any time!!!!) it will help me to look more at his progress.
My guy can dress himself, mostly without help. He can brush his teeth, although he'd rather skip it. He can peddle a tricycle. He is learning to read three-letter words. He smiles and laughs daily, and I hear "I love you forever, I'll like you for always, As long as I'm living, my Mommy you'll be" more times in a day than I can count. He is doing great.
To quote the article, " I've also learned that at a certain point fighting the autism begins to feel more like fighting your child". OUCH! I'm guilty of days of pushing....just one more try...maybe he will get it this time...ok, then just one more time...next time for sure. G pushing back, trying to tell me in his own way that he has had enough.
I'm not advocating that we give up. Not at all. G personally needs repetition. It is how he learns. But I have found myself pushing harder than might have been necessary. The guilt seems to follow you if you push too hard or not hard enough.
But it also says, "....I do wish I'd understood sooner the battle was not an all-or-nothing one. I wish I'd learned earlier to see and celebrate the small victories when they came instead of holding my breath for bigger ones."
We are fortunate. We are seeing victories. Probably more than many others. And I am grateful.
For today, I will thank God for the victory...large and small. I will pray that there is a cure for this disease and others like it. But also that I keep a proper perspective for G's achievements. He is God's creation after all. And He has loaned me His wonderful creation while we are here on earth. Thank you, Father God. I am honored.
Wednesday, April 28, 2010
What Should I Do?
Yesterday my son and I went for a haircut. This is the first time we both needed one on the same day. I had prepped him for sitting in my lap, watching me get mine done and then moving on to his. This was not to be....
Let me say first of all that we have a FANTASTIC therapist who helped us desensitize G to the noise of the buzz clips. She used a vibration type toy to massage his head with during therapy (and this was as I offhandedly mentioned a hair cut at the beginning of his therapy session--Thank you Ms. Robyn, we love you!!) So G was ready for the clippers. He was not however, ready for the "hair cut lady"!
The salon was empty except for the two of us and two stylists. They were both nice and friendly but the one insisted on G coming in to her chair to get his hair cut at the same time the other stylist cut mine. She did win G over, and he went to her chair. (It was harder for me to supervise and therefore he has a much shorter cut that I prefer, but that's another story).
He began by telling her he did not like the hair dryer. She told him she wouldn't use it. A few minutes later, he told her again. "No hair dryer." She promised they wouldn't need it. She chatted with him and he actually did pretty well. He repeatedly insisted on having no hair dryer anywhere near him. Then she made a comment to me....
She compared my son to RainMan. You know the movie...Dustin Hoffman, Tom Cruise, the Autistic guy who repeats himself and is insistent on certain things.
Now I know she had no idea that G is Autistic. And I don't think she meant any harm by this remark. It just kind of got ground in when she couldn't remember exactly the line from the movie she was searching for to make her point, and she pondered it out loud over and over again.
What bothered me most was my reaction. Or lack of reaction. I politely smiled and tried to change the subject. I didn't make the comments that were rolling around in my mind like "Did you know that RainMan was Autistic and he was nervous to be out of his environment and he did a pretty darn good job making it cross country with some one he didn't really know? Did you know that my son is Autistic too and he is handling this all pretty well also especially considering you are talking about him like he isn't sitting right in front of you???" I didn't say that.
I didn't say, " How would you like it if some stranger squirted your head with water when water is one of the things you can't stand? How would you like it if someone kept telling you that she won't touch you with the hair dryer but you can see it sitting RIGHT THERE and you don't really know if it's ok to trust her?" I didn't say that either.
I also didn't tell her that G has made such amazing progress that the fact he is sitting here , talking to her, walked in on his own and is even alive to need a hair cut is a miracle. I didn't say any of those things.
I know I'm not supposed to unload on someone who makes a comment like that. Maybe it shouldn't even have bothered me, but it did. Did I let G down by not speaking up? Did I send the wrong message by not even acknowledging his Autism? I would love to hear other's thoughts on this. It's hard to know how to react sometimes or even if I am supposed to react.
So for now I'll pray about this. I need guidance. I will ask God to send me the words to say in those situations. And for the grace to love this woman...just as He has loved me.
Let me say first of all that we have a FANTASTIC therapist who helped us desensitize G to the noise of the buzz clips. She used a vibration type toy to massage his head with during therapy (and this was as I offhandedly mentioned a hair cut at the beginning of his therapy session--Thank you Ms. Robyn, we love you!!) So G was ready for the clippers. He was not however, ready for the "hair cut lady"!
The salon was empty except for the two of us and two stylists. They were both nice and friendly but the one insisted on G coming in to her chair to get his hair cut at the same time the other stylist cut mine. She did win G over, and he went to her chair. (It was harder for me to supervise and therefore he has a much shorter cut that I prefer, but that's another story).
He began by telling her he did not like the hair dryer. She told him she wouldn't use it. A few minutes later, he told her again. "No hair dryer." She promised they wouldn't need it. She chatted with him and he actually did pretty well. He repeatedly insisted on having no hair dryer anywhere near him. Then she made a comment to me....
She compared my son to RainMan. You know the movie...Dustin Hoffman, Tom Cruise, the Autistic guy who repeats himself and is insistent on certain things.
Now I know she had no idea that G is Autistic. And I don't think she meant any harm by this remark. It just kind of got ground in when she couldn't remember exactly the line from the movie she was searching for to make her point, and she pondered it out loud over and over again.
What bothered me most was my reaction. Or lack of reaction. I politely smiled and tried to change the subject. I didn't make the comments that were rolling around in my mind like "Did you know that RainMan was Autistic and he was nervous to be out of his environment and he did a pretty darn good job making it cross country with some one he didn't really know? Did you know that my son is Autistic too and he is handling this all pretty well also especially considering you are talking about him like he isn't sitting right in front of you???" I didn't say that.
I didn't say, " How would you like it if some stranger squirted your head with water when water is one of the things you can't stand? How would you like it if someone kept telling you that she won't touch you with the hair dryer but you can see it sitting RIGHT THERE and you don't really know if it's ok to trust her?" I didn't say that either.
I also didn't tell her that G has made such amazing progress that the fact he is sitting here , talking to her, walked in on his own and is even alive to need a hair cut is a miracle. I didn't say any of those things.
I know I'm not supposed to unload on someone who makes a comment like that. Maybe it shouldn't even have bothered me, but it did. Did I let G down by not speaking up? Did I send the wrong message by not even acknowledging his Autism? I would love to hear other's thoughts on this. It's hard to know how to react sometimes or even if I am supposed to react.
So for now I'll pray about this. I need guidance. I will ask God to send me the words to say in those situations. And for the grace to love this woman...just as He has loved me.
Tuesday, November 17, 2009
Part of the Club
Last week we met some friends for dinner. We had a fantastic time...the kids playing, the adults chatting. We got to catch up on who-did-what and where-are-they-now sort of things. The children hadn't met before and although they were of various ages, they seemed to enjoy each other's company.
One of the other children has Autism, just like my son. As moms, we compared notes on development and Autism-isms. I took comfort in the fact that her child was older than mine, and they had survived and thrived in areas that we too are now facing.
As we traveled home, I was thinking about being part of this "Autism Club". As I prayed that night, I found myself once again so sad at this thought. I don't think it is fair for a child...mine or hers or any child at all...to have Autism. I don't want my son to be part of this club. I don't want her child to be part of this club. I questioned God, I begged God, I cried out to God to change this. I gave God all kinds of ways that would work...as if He (God Almighty, Creator of the Universe) needed my help!
This Sunday as the pastor preached his message he made a point that stuck with me. We often try in our own strength to fix things. When that doesn't work, we tell God how to fix it. It is not our job to do this, only to believe that He is God and He has our best interest at heart. If we are truly His followers and are striving to live a life that is pleasing to Him, we have to believe in His sovereignty.
It's hard for me, I admit it. I am wired to lay out a plan, follow the path and see the end result turn out to be exactly what I expected. It's really hard for me when that doesn't happen. But I am reminded that if God knows the number of hairs on my head, He is very aware of everything else that is in my life . Not only is He aware of it, but none of it has been a surprise to Him. He has allowed things to happen that ultimately show His glory. It is His plan. It is His path. It is His end result. It is all for Him.
My head swims at the thought of my Father carefully planning out my life, my son's life, my friend's life...from beginning to end. It amazes me. I am in awe. And I can let go of my own plan because I know the one my Lord has for me it so much better than anything I can ever imagine. Thank you God for this reminder.
One of the other children has Autism, just like my son. As moms, we compared notes on development and Autism-isms. I took comfort in the fact that her child was older than mine, and they had survived and thrived in areas that we too are now facing.
As we traveled home, I was thinking about being part of this "Autism Club". As I prayed that night, I found myself once again so sad at this thought. I don't think it is fair for a child...mine or hers or any child at all...to have Autism. I don't want my son to be part of this club. I don't want her child to be part of this club. I questioned God, I begged God, I cried out to God to change this. I gave God all kinds of ways that would work...as if He (God Almighty, Creator of the Universe) needed my help!
This Sunday as the pastor preached his message he made a point that stuck with me. We often try in our own strength to fix things. When that doesn't work, we tell God how to fix it. It is not our job to do this, only to believe that He is God and He has our best interest at heart. If we are truly His followers and are striving to live a life that is pleasing to Him, we have to believe in His sovereignty.
It's hard for me, I admit it. I am wired to lay out a plan, follow the path and see the end result turn out to be exactly what I expected. It's really hard for me when that doesn't happen. But I am reminded that if God knows the number of hairs on my head, He is very aware of everything else that is in my life . Not only is He aware of it, but none of it has been a surprise to Him. He has allowed things to happen that ultimately show His glory. It is His plan. It is His path. It is His end result. It is all for Him.
My head swims at the thought of my Father carefully planning out my life, my son's life, my friend's life...from beginning to end. It amazes me. I am in awe. And I can let go of my own plan because I know the one my Lord has for me it so much better than anything I can ever imagine. Thank you God for this reminder.
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