Originally posted August 26th, 2008
This morning, Daniel and I were headed to his school. As we drove over Coldwater Creek, I slowed down for him to look at the creek overflowing its banks (for you locals, it was touching the bottom of the "little bridge", and was into the parking lot on both sides.). He asked if, when it stops raining "day after tomorrow", we could come swimming. I answered, "No-ah." (You'll have to say it out loud to get the full effect...go ahead, look around to see if anyone is nearby, I'll wait...............coast clear? Okay, say it with me, "No-ah." stress on the Ah. Got it? Good.) Naturally, his answer was, "Whyyyyyyyyyyyyyy-ah?" to which I gave my most motherly reply, "Becuz-ah." So, startin' his whineeeeeee, he said, "Can we, Mommmmm???" Not one to back down easily and give in (yah,right), I repeated, "Noooo-ah."
Apparently, my meandering mind is a genetic thing because my spawn, er, son, then said, "Hey. NOAH! I know who that is!! But...who's Becuz-ah?" Thinkin' on my feet, er, seat, I replied, "Um...Noah's wife??"
He pondered that a minute and giggled and said, "Really?" Then I told him that Noah's wife's name isn't mentioned in the Bible, which must have really been hard on the preacher that married them - "Do you Noah, take, er, um, er, ohhhhh...um...What's-her-name here to be your lawfully wedded wife?" and "Do you, er, um, er, ohhhhh...Whoever-you-are take Noah to be your lawfully wedded husband?" (Parental Distraction Tactic successful: Mission Accomplished!) And he laughed & forgot all about swimming in the creek.
So, I dropped him off at school, and headed home, recalled our "conversation", and my MM took over & I thought to myself, "Self....wonder what one's gotta do to NOT get her name written down in the Bible when her husband is pretty doggone famous?" Self didn't have an answer, and neither do I. It IS a curious question, though, don't you think? I did, however, tickle myself with the thought, "Hmm...wonder if after this election is over, if BO doesn't win -will his wife go down in the history books as Mama Obama?" I giggled quietly to myself all the way home.
Love to all!
Thursday, April 23, 2009
Monday, April 20, 2009
Priceless..
(originally posted May 6, 2008)
I'm always tickled at Daniel's unique perspective on the world...and I often giggle at his literal understanding of things. Today, there were two prime examples - and I also remembered a third - that I want to share with you.
This afternoon, Daniel came home from school & his weekly folder was in his backpack. It contains all the graded papers from the previous week for me to look over & then sign the folder.
As I looked over his papers, I noticed that he'd made a 100 on his spelling test, but had missed the bonus question that she always gives them. As I read the question and his answer, I couldn't help but laugh out loud. I'll type out the question here. See if you can guess what his answer would be. Think literally.....
"If there are two weeks and three days left of school, counting today how many days do we have left?"
Any idea what his answer was? Okay, I'll tell you. His answer was "One day". Now, go read the question again...do it out loud, because he probably did....think literally.....do you see it?
"Counting today" equals ONE day - he counted ONLY that day.. For him to understand it, the problem should have read something like, Including today, all together how many days do we have left. I laughed out loud. Of course he got the answer wrong, but hey - he was right if you look at it literally!
THEN...I was watching "10 Years Younger" on TLC, and he was doing his V-Math on the computer. I didn't know he was paying any attention to the TV, but the host of the TV show said, "We're gonna help Lindsay break out of her shell." and Daniel said, "But she's not a MOLLUSK!"
And all of that reminded me of an incident last year...he was in Math class at school, and suddenly he stood up from his desk and headed out the door. His aide stopped him and said, "Where do you think you're going???" and he said, "But, my paper said to!" and she said, "Whaaa??" and he showed her his paper. It read, "Leave room to show your work." So, he was leaving the room!!
Hahahaha!! Is that a unique perspective on the world, or what?
I'm always tickled at Daniel's unique perspective on the world...and I often giggle at his literal understanding of things. Today, there were two prime examples - and I also remembered a third - that I want to share with you.
This afternoon, Daniel came home from school & his weekly folder was in his backpack. It contains all the graded papers from the previous week for me to look over & then sign the folder.
As I looked over his papers, I noticed that he'd made a 100 on his spelling test, but had missed the bonus question that she always gives them. As I read the question and his answer, I couldn't help but laugh out loud. I'll type out the question here. See if you can guess what his answer would be. Think literally.....
"If there are two weeks and three days left of school, counting today how many days do we have left?"
Any idea what his answer was? Okay, I'll tell you. His answer was "One day". Now, go read the question again...do it out loud, because he probably did....think literally.....do you see it?
"Counting today" equals ONE day - he counted ONLY that day.. For him to understand it, the problem should have read something like, Including today, all together how many days do we have left. I laughed out loud. Of course he got the answer wrong, but hey - he was right if you look at it literally!
THEN...I was watching "10 Years Younger" on TLC, and he was doing his V-Math on the computer. I didn't know he was paying any attention to the TV, but the host of the TV show said, "We're gonna help Lindsay break out of her shell." and Daniel said, "But she's not a MOLLUSK!"
And all of that reminded me of an incident last year...he was in Math class at school, and suddenly he stood up from his desk and headed out the door. His aide stopped him and said, "Where do you think you're going???" and he said, "But, my paper said to!" and she said, "Whaaa??" and he showed her his paper. It read, "Leave room to show your work." So, he was leaving the room!!
Hahahaha!! Is that a unique perspective on the world, or what?
Thursday, April 16, 2009
Thinking today..
Been thinking today of how to "finish" my BLAHgs about our journey. I looked back over all the posts to make sure I'd remembered everything I wanted to tell you. As I looked over our story, I thought of all the families out there with stories similar to ours. I thought of all the wonderful parents that I've met "out there" with children with autism. Many of the families I know have children with fairly mild autism, like Daniel. But for many, their children are more severely affected. I don't pretend to fully understand what they go through every day. I can imagine that I have an idea, but autism is a spectrum condition, each end, each child, being vastly different from the other. My heart goes out to those parents who've never heard their child speak. I ache for the parents who see their child self-injure themselves in an attempt to escape the sensory pain they live in. When I pray for those in the autism community, it is these families who cause my heart to cry out most fervently. I can't truly know their pain, or their fears for the future of their children. Our story holds no candle in comparison to what they've gone through. They have my heart.
In the early days of our journey - even before his diagnosis, I turned to the internet for information and support. I didn't know anyone locally with an autistic child, so I searched out people who'd been there, done that, and could help me through all the days ahead. I found friends, true friends, who were there every time I signed on line with a question, fear, or just in pain. In the early days, there was Vikki - a wonderful mom who walked with me through Daniel's diagnosis. We'd sit up at night until 2 or 3 am "talking" via IM. We'd at first talk about autism, but then we'd begin to just enjoy each other's company - a respite from the medical, neurological, educational, and behavioral world we'd found ourselves flung into by autism. Many nights I would sit at the computer with my hand over my mouth to stifle my laughter so as not to wake my family. It was a world away from covering my mouth to hide my sobs. I needed that at the time. On the day I got Daniel's diagnosis, I came home & sat at the computer and typed out the diagnosis & sent it to Vikki. She replied with an e-mail - the subject line read: In Honor of Your Arrival... and the text of the e-mail was an article entitled "Welcome to Holland". Do a Google search for that title. You'll find it. Sadly, cancer and other things took Vikki away from the computer. She is a survivor, but no longer able to be on line. We've lost contact, and I still miss her. Perhaps someday...(Vikki, if you ever come across this blog & read it - I never DID find that screw I lost!)
I met other people on line who became very important parts of our journey. As we all posted on an autism message board, we were drawn to each other & soon began to send out group e-mails. We didn't focus on autism alone. We began to get to know each other & enjoy each other's friendship. We began to exchange photographs. During a group e-mail "conversation", we were discussing our pictures, and we all decided that we were some seriously Hot Mamas. During another group discussion, we all admitted that we're not perfect parents (imagine that!), and that we sometimes scream at our children (God forgive!). As a joke, one of the women - Donna - posted that we were the Screamin' Hot Mamas of America. (Was it America, Donna, or Autistics?) And THAT is how "SHMOA" came to be. We are: Donna (president, of course...after all - she named us! I've met Donna in person!), Patti, Tammy, Laura, Jeanna, Ginny, Liane, Paul (honorary SHMOA - bein's he's a dad & all), Carla, and me. Over the years, circumstances took some people away from SHMOA (and we still miss them!) - they are: Leah, Kim, Molly, Billie, Teal (whom I've met in person as well!) and Laelah. All of these people were a life-line to me in those early days. Today, they're my friends....and a monument to the resiliency of the human spirit! So many stories I could tell you about what these people have gone through - are going through - with autism, or even within their daily lives, apart from the autism. We have walked together through diagnosis, deaths, cancer, MS diagnosis, RA diagnosis, divorce, abuse, cross-country moves, job losses, new jobs, transfers, IEP meetings, due process hearings, regressions, progresses (sometimes leaps and bounds!), miracles, and heartbreak. These women (and man!) are representatives of what has grown to be a very large community - the autism community; families affected in one way or another, to one degree or another, by autism. Today, there are 1.5 million families in America who are affected by autism. 1 in 150 children are diagnosed with autism. I read somewhere that that's one every 24 minutes.
Our story is a rain drop in an ocean of stories out there. We are blessed. So many out there struggle far more than we ever have, or ever will. When you pray for us, please pray for them. These children are precious - each and every one of them. If you'd like to commit to praying for children with autism and their families, you can receive daily prayers/prayer points from Children of Destiny. (.org, I think it is)
Thank you for taking the time to read our journey. Typing it out for you has been a wonderful reminder to me of all the ways in which God has blessed my family. I've smiled, remembering. I've even shed a tear or two - but not a single one has been a tear of sadness. How marvelous & faithful is our God?!?!
If you have any questions that I can try to answer, feel free to ask. You won't offend or bother me.
God bless you!
In the early days of our journey - even before his diagnosis, I turned to the internet for information and support. I didn't know anyone locally with an autistic child, so I searched out people who'd been there, done that, and could help me through all the days ahead. I found friends, true friends, who were there every time I signed on line with a question, fear, or just in pain. In the early days, there was Vikki - a wonderful mom who walked with me through Daniel's diagnosis. We'd sit up at night until 2 or 3 am "talking" via IM. We'd at first talk about autism, but then we'd begin to just enjoy each other's company - a respite from the medical, neurological, educational, and behavioral world we'd found ourselves flung into by autism. Many nights I would sit at the computer with my hand over my mouth to stifle my laughter so as not to wake my family. It was a world away from covering my mouth to hide my sobs. I needed that at the time. On the day I got Daniel's diagnosis, I came home & sat at the computer and typed out the diagnosis & sent it to Vikki. She replied with an e-mail - the subject line read: In Honor of Your Arrival... and the text of the e-mail was an article entitled "Welcome to Holland". Do a Google search for that title. You'll find it. Sadly, cancer and other things took Vikki away from the computer. She is a survivor, but no longer able to be on line. We've lost contact, and I still miss her. Perhaps someday...(Vikki, if you ever come across this blog & read it - I never DID find that screw I lost!)
I met other people on line who became very important parts of our journey. As we all posted on an autism message board, we were drawn to each other & soon began to send out group e-mails. We didn't focus on autism alone. We began to get to know each other & enjoy each other's friendship. We began to exchange photographs. During a group e-mail "conversation", we were discussing our pictures, and we all decided that we were some seriously Hot Mamas. During another group discussion, we all admitted that we're not perfect parents (imagine that!), and that we sometimes scream at our children (God forgive!). As a joke, one of the women - Donna - posted that we were the Screamin' Hot Mamas of America. (Was it America, Donna, or Autistics?) And THAT is how "SHMOA" came to be. We are: Donna (president, of course...after all - she named us! I've met Donna in person!), Patti, Tammy, Laura, Jeanna, Ginny, Liane, Paul (honorary SHMOA - bein's he's a dad & all), Carla, and me. Over the years, circumstances took some people away from SHMOA (and we still miss them!) - they are: Leah, Kim, Molly, Billie, Teal (whom I've met in person as well!) and Laelah. All of these people were a life-line to me in those early days. Today, they're my friends....and a monument to the resiliency of the human spirit! So many stories I could tell you about what these people have gone through - are going through - with autism, or even within their daily lives, apart from the autism. We have walked together through diagnosis, deaths, cancer, MS diagnosis, RA diagnosis, divorce, abuse, cross-country moves, job losses, new jobs, transfers, IEP meetings, due process hearings, regressions, progresses (sometimes leaps and bounds!), miracles, and heartbreak. These women (and man!) are representatives of what has grown to be a very large community - the autism community; families affected in one way or another, to one degree or another, by autism. Today, there are 1.5 million families in America who are affected by autism. 1 in 150 children are diagnosed with autism. I read somewhere that that's one every 24 minutes.
Our story is a rain drop in an ocean of stories out there. We are blessed. So many out there struggle far more than we ever have, or ever will. When you pray for us, please pray for them. These children are precious - each and every one of them. If you'd like to commit to praying for children with autism and their families, you can receive daily prayers/prayer points from Children of Destiny. (.org, I think it is)
Thank you for taking the time to read our journey. Typing it out for you has been a wonderful reminder to me of all the ways in which God has blessed my family. I've smiled, remembering. I've even shed a tear or two - but not a single one has been a tear of sadness. How marvelous & faithful is our God?!?!
If you have any questions that I can try to answer, feel free to ask. You won't offend or bother me.
God bless you!
Wednesday, April 15, 2009
To Give Credit Where Credit is Due...
Okay, so in my month's (well, half-month) worth of autism awareness BLAHgs, I've mentioned a couple of times about crossing over the Bridge of Nevertheless. I need to give credit where it is due. That is NOT "my" terminology or idea. On December 10, 2001 - the day I found the information on the internet that pointed me toward autism - I received an e-mail (within a few minutes of finding the autism info) from Spirit-led Woman entitled The Bridge of Nevertheless. I still have it, although I can't currently locate it. (Don't ask!) Anyway, it talked about how when God allows things in our life, or asks us to do things that we don't want to do that it's okay to tell God why we're not the person for the job, it's okay to argue with Him as if trying to convince Him to choose someone else. But, in the end, it's our obedience that He truly wants and we must cross over the Bridge of Nevertheless.
I don't think I've ever gotten a more timely e-mail. It truly ministered to me that day & I've never forgotten it.
When I find it, I'll tell you who wrote it. But - just so ya know...it tweren't me.
I don't think I've ever gotten a more timely e-mail. It truly ministered to me that day & I've never forgotten it.
When I find it, I'll tell you who wrote it. But - just so ya know...it tweren't me.
Tuesday, April 14, 2009
Letter continued...
"Do I still pray for Daniel's healing? Absolutely. Do I believe beyond a doubt that God is able to heal him? Completely. Do I believe that God created Daniel exactly as he is for a specific purpose? Wondrously. Do I trust Him to fulfill His Will for Daniel, and for our family? Wholeheartedly. God is God. I'm not. I don't know what the future holds, but I know Who holds the future, and that's enough for me. I still get angry, I still get frustrated, I still pray for healing. But I rarely question why God hasn't healed him - and I guess it's because God has healed ME for the most part. I don't try to claim that there don't come days when those questions don't arise. If Daniel someday hurts because he realizes how different he is, I'll hurt along with him. And when Daniel dreams his own dreams for his future, I'll dream right along with him....if his dreams get shattered, I'll try to help him find his kaleidoscope, too.
In the meantime, I have so many wonderful memories of little victories applauded. I remember our very first actual conversation (it was about frogs). I remember so many times when Daniel's matter of factness was incredibly hilarious, and he realized that he'd "made a joke" (yes, he says that JUST like Rain Man did!) & laughed harder than anyone, even though he didn't realize what he had said. I remember the times when he has literally made a joke, knowing full well what he was saying. Twice in the past week, he's cracked us all up or melted our hearts..
Once Davey asked, "Mom, if you're riding a bike around a pool, and you fall in, what happens?" and quicker than a flash, Daniel answered, "You get wet." And we all just crumbled in heaps of hilarity.
Yesterday was Davey's birthday. I made him a heart shaped cake. When it was time to cut it, both boys were standing beside me with plates in hands eagerly awaiting their slice. As I began to cut the cake, Daniel said, "Mom, you're breakin' my heart. Y'get it? You're breaking my heart!" We lost it and I almost dropped the slice I was serving!
Just today, he got into the car after school. I usually pack his lunch, and two snacks every day. He has to have a snack after P.E. because his blood sugar drops & he can't focus during the class following P.E. Today, he told me, "Mom, this morning, I gave one of my fruit roll-ups to John F. (a boy in his class from a very poor local family). He got to school late and couldn't go to the lunchroom for breakfast and he was hungry, so I gave him one of my fruit roll-ups." How sweet is that? I can't tell you how many times I've read/heard that people with autism lack the ability to empathize and show compassion. Not if God is in the picture!
One day several weeks ago, I was watching a video on line of one of my support group friends working with her severely autistic son doing school work using a new teaching method (Rapid Prompting Method). His name is D----, and he rocks and makes noises as he works. Daniel heard the sounds D was making and came over to check out what I was watching. After a few minutes, he said something like, "What's he doing?" and I said, "He's learning. His mommy is teaching him." and he said, "What's he doing, though?" (I realized he was meaning the sounds D was making.) and I said, "He's making sounds. He likes the way it sounds, so he makes those sounds to help himself stay calm." And Daniel asked me, "What's wrong with him?" and I said, "He has autism." Daniel replied, "Like me? I have autism." I said, "Yes, like you, but his autism makes it harder for him to learn that it does for you. He's doing his school work with his mommy. Your autism isn't like his; you get to go to school." He said, "Yeah..." and walked off. Then, he said as he sat back down on the couch, "It's because I have autism in Jesus." I sobbed. He's right. He has autism in Jesus. No way that's a bad thing!
He's got an incredible sense of humor, he's an amazing artist, and he's the most tender-hearted child I've ever known. He wept as he watched a video of mine and Joel's wedding. God has created something beautiful out of something that could have destroyed all of us, if we'd let it. Many, many families are destroyed when autism comes into their lives. We just chose instead to cross the Bridge of Nevertheless, and trust God's Plan for us. It's not always easy, but it's always worth it.
I hope that answers your questions, and helps you see that we're not some super-spiritual, ain't nuthin' gonna faze us Christians. (Although we aspire to one day be!) We're just a mommy, and a daddy, and a big brother, who love a very special little fella a whole lot, and love a very great and big God even more. Simple."
"P.S. A couple of other things God has shown me.... One day while reading my Bible, I came across a verse in Hosea - "I will make the valley of trouble a door of hope." and He has faithfully kept that precious promise.
And one night I had a dream in which I very clearly heard the words, "The child has autism. Autism doesn't have the child." Interestingly, a few months later, I was browsing around on an autism website that I'd never visited before, and I came across those very words typed by another mother on the other side of the world. God is a good God....and really big. "
In the meantime, I have so many wonderful memories of little victories applauded. I remember our very first actual conversation (it was about frogs). I remember so many times when Daniel's matter of factness was incredibly hilarious, and he realized that he'd "made a joke" (yes, he says that JUST like Rain Man did!) & laughed harder than anyone, even though he didn't realize what he had said. I remember the times when he has literally made a joke, knowing full well what he was saying. Twice in the past week, he's cracked us all up or melted our hearts..
Once Davey asked, "Mom, if you're riding a bike around a pool, and you fall in, what happens?" and quicker than a flash, Daniel answered, "You get wet." And we all just crumbled in heaps of hilarity.
Yesterday was Davey's birthday. I made him a heart shaped cake. When it was time to cut it, both boys were standing beside me with plates in hands eagerly awaiting their slice. As I began to cut the cake, Daniel said, "Mom, you're breakin' my heart. Y'get it? You're breaking my heart!" We lost it and I almost dropped the slice I was serving!
Just today, he got into the car after school. I usually pack his lunch, and two snacks every day. He has to have a snack after P.E. because his blood sugar drops & he can't focus during the class following P.E. Today, he told me, "Mom, this morning, I gave one of my fruit roll-ups to John F. (a boy in his class from a very poor local family). He got to school late and couldn't go to the lunchroom for breakfast and he was hungry, so I gave him one of my fruit roll-ups." How sweet is that? I can't tell you how many times I've read/heard that people with autism lack the ability to empathize and show compassion. Not if God is in the picture!
One day several weeks ago, I was watching a video on line of one of my support group friends working with her severely autistic son doing school work using a new teaching method (Rapid Prompting Method). His name is D----, and he rocks and makes noises as he works. Daniel heard the sounds D was making and came over to check out what I was watching. After a few minutes, he said something like, "What's he doing?" and I said, "He's learning. His mommy is teaching him." and he said, "What's he doing, though?" (I realized he was meaning the sounds D was making.) and I said, "He's making sounds. He likes the way it sounds, so he makes those sounds to help himself stay calm." And Daniel asked me, "What's wrong with him?" and I said, "He has autism." Daniel replied, "Like me? I have autism." I said, "Yes, like you, but his autism makes it harder for him to learn that it does for you. He's doing his school work with his mommy. Your autism isn't like his; you get to go to school." He said, "Yeah..." and walked off. Then, he said as he sat back down on the couch, "It's because I have autism in Jesus." I sobbed. He's right. He has autism in Jesus. No way that's a bad thing!
He's got an incredible sense of humor, he's an amazing artist, and he's the most tender-hearted child I've ever known. He wept as he watched a video of mine and Joel's wedding. God has created something beautiful out of something that could have destroyed all of us, if we'd let it. Many, many families are destroyed when autism comes into their lives. We just chose instead to cross the Bridge of Nevertheless, and trust God's Plan for us. It's not always easy, but it's always worth it.
I hope that answers your questions, and helps you see that we're not some super-spiritual, ain't nuthin' gonna faze us Christians. (Although we aspire to one day be!) We're just a mommy, and a daddy, and a big brother, who love a very special little fella a whole lot, and love a very great and big God even more. Simple."
"P.S. A couple of other things God has shown me.... One day while reading my Bible, I came across a verse in Hosea - "I will make the valley of trouble a door of hope." and He has faithfully kept that precious promise.
And one night I had a dream in which I very clearly heard the words, "The child has autism. Autism doesn't have the child." Interestingly, a few months later, I was browsing around on an autism website that I'd never visited before, and I came across those very words typed by another mother on the other side of the world. God is a good God....and really big. "
Monday, April 13, 2009
Open Letter to a Friend...
In March of 2006, I was sitting in Bible study at church. I don't remember the subject, but the person teaching the class was discussing when God doesn't seem to be answering a prayer of faith for healing and the questions we might ask. A friend came up after class and asked me if I ever question why God hasn't healed Daniel. I answered her, "Not really." and she seemed surprised. I wanted to tell her all I meant by that statement, but time just wouldn't allow it, so I left it at that.
Later, though, I knew that I needed to explain to her what I'd meant, so I wrote her a letter. I won't include the entire letter because much of it is just giving her the background of our journey - and you've already read that here. But, I'll share the part that caused me to answer her with, "Not really."
"So, I thought about your question, and knew that I needed to answer it - I didn't want you to think that I believe I'm some super Christian with hyper faith that will trust God without anger, fear, doubt, disappointment, etc. I struggle with all those things from time to time - I don't know anyone who doesn't, if they're honest. But, over the years since Daniel's diagnosis, God has taught me a few things, and so those are the things that keep me saying, "Not really" when someone asks me if I question God. I want to share those things with you, since you asked. "
"As time passed, we started getting Daniel the help he needed, and he began to progress, I began to turn my attention from focusing so much on his needs to realizing that I had needs of my own. I'd learned to speak up for Daniel with the school systems, learned some of the special education law, learned to respond instead of react when he did something (most of the time), learned to have a little compassion for the snotty clerk at the store because I didn't know what she faced at home...so many things I'd learned. But, I'd not faced what was happening inside of me. I'd not asked God the hard questions because I'd been so busy researching and working for Daniel. I'd not really allowed myself to go through a grieving process.
I went throught times where I thought autism is part of who Daniel is, and I wondered if I prayed for his healing, would I be asking God to kill some vital part of what made Daniel so uniquely Daniel. I went from wondering if it was even okay to seek a cure to wondering why there was no cure out there. I didn't dare dream of Daniel's future, because I didn't want to see that dream shatter - again.
I don't remember when it happened, I don't remember how it happened, but at some point, God began to work in me. I began to be angry from time to time and to question Him. It wasn't always there, but it popped up sometimes. I began to wonder what the future held. Sometimes I cried, especially when I faced an important meeting with the school, and I feared what they'd tell me. Or when I'd get so horribly frustrated with him & want to tear out my hair, then would be so appalled at the horrible mother I can be. But, I also began to see tiny miracles in our everyday life. And somewhere inside me, God placed a "picture"; one night just this past summer I was sitting at the computer, reading the autism message boards, a place I'd visited so many times before in the past few years, and one woman's post hit me. She was questioning her faith and how God could allow her son to have autism - he'd just been diagnosed. I sat down and began to respond to her, and as I did, I realized that I was typing down the "picture" that God had placed in my heart & He was healing me of the hurt, fear, and disappointment. I told her that God is the Kaleidoscope Maker.
We've all looked through a kaleidoscope. I don't mean the cheap, dollar store version. I mean a good quality, glass kaleidoscope. There's nothing like them. At some point, God had taken the shards of what I saw as shattered dreams for Daniel, and had created from them a kaleidoscope of beauty that I could not have imagined possible before his diagnosis. You know when you look through a kaleidoscope, you turn it, and the design created is so beautiful that you stop and look at it for a while? Then, you turn it and another design emerges, and you wonder if this one is your favorite, and how could the next one possibly be better? Then something happens, and you find yourself turning the kaleidoscope again, and yet another pattern falls into place and while you miss the old pattern, you realize it's gone forever and this one is quite beautiful, too, and maybe IT is your favorite after all?
Well, that's how autism is. And that's how God is with autism - or any shattered dream. I look through the kaleidoscope at the beautiful thing that God has created of my shattered dreams. I see progress in Daniel and growth, and a beautiful hope fills my heart. Then, I see a new behavior, some not before seen symptom of autism begin to manifest in Daniel, and I know that as he grows, he'll progress and regress until in early adulthood he'll settle into the level of functioning he'll carry his lifetime. The pattern in the kaleidoscope changes - no less beautiful, but different. Oh, maybe I like a little more green or yellow in the pattern than this one has, but I can't deny that the colors are spectacular as they are, and the pattern is exquisite and intricate. Without God's Hand in it, though, it would just be broken glass in a tube. Do you understand what I'm saying? It's God's Hand that makes it beautiful. Because I trust His Heart for Daniel, I trust that however the pattern turns, He will make it into something beautiful."
To be continued.....
Later, though, I knew that I needed to explain to her what I'd meant, so I wrote her a letter. I won't include the entire letter because much of it is just giving her the background of our journey - and you've already read that here. But, I'll share the part that caused me to answer her with, "Not really."
"So, I thought about your question, and knew that I needed to answer it - I didn't want you to think that I believe I'm some super Christian with hyper faith that will trust God without anger, fear, doubt, disappointment, etc. I struggle with all those things from time to time - I don't know anyone who doesn't, if they're honest. But, over the years since Daniel's diagnosis, God has taught me a few things, and so those are the things that keep me saying, "Not really" when someone asks me if I question God. I want to share those things with you, since you asked. "
"As time passed, we started getting Daniel the help he needed, and he began to progress, I began to turn my attention from focusing so much on his needs to realizing that I had needs of my own. I'd learned to speak up for Daniel with the school systems, learned some of the special education law, learned to respond instead of react when he did something (most of the time), learned to have a little compassion for the snotty clerk at the store because I didn't know what she faced at home...so many things I'd learned. But, I'd not faced what was happening inside of me. I'd not asked God the hard questions because I'd been so busy researching and working for Daniel. I'd not really allowed myself to go through a grieving process.
I went throught times where I thought autism is part of who Daniel is, and I wondered if I prayed for his healing, would I be asking God to kill some vital part of what made Daniel so uniquely Daniel. I went from wondering if it was even okay to seek a cure to wondering why there was no cure out there. I didn't dare dream of Daniel's future, because I didn't want to see that dream shatter - again.
I don't remember when it happened, I don't remember how it happened, but at some point, God began to work in me. I began to be angry from time to time and to question Him. It wasn't always there, but it popped up sometimes. I began to wonder what the future held. Sometimes I cried, especially when I faced an important meeting with the school, and I feared what they'd tell me. Or when I'd get so horribly frustrated with him & want to tear out my hair, then would be so appalled at the horrible mother I can be. But, I also began to see tiny miracles in our everyday life. And somewhere inside me, God placed a "picture"; one night just this past summer I was sitting at the computer, reading the autism message boards, a place I'd visited so many times before in the past few years, and one woman's post hit me. She was questioning her faith and how God could allow her son to have autism - he'd just been diagnosed. I sat down and began to respond to her, and as I did, I realized that I was typing down the "picture" that God had placed in my heart & He was healing me of the hurt, fear, and disappointment. I told her that God is the Kaleidoscope Maker.
We've all looked through a kaleidoscope. I don't mean the cheap, dollar store version. I mean a good quality, glass kaleidoscope. There's nothing like them. At some point, God had taken the shards of what I saw as shattered dreams for Daniel, and had created from them a kaleidoscope of beauty that I could not have imagined possible before his diagnosis. You know when you look through a kaleidoscope, you turn it, and the design created is so beautiful that you stop and look at it for a while? Then, you turn it and another design emerges, and you wonder if this one is your favorite, and how could the next one possibly be better? Then something happens, and you find yourself turning the kaleidoscope again, and yet another pattern falls into place and while you miss the old pattern, you realize it's gone forever and this one is quite beautiful, too, and maybe IT is your favorite after all?
Well, that's how autism is. And that's how God is with autism - or any shattered dream. I look through the kaleidoscope at the beautiful thing that God has created of my shattered dreams. I see progress in Daniel and growth, and a beautiful hope fills my heart. Then, I see a new behavior, some not before seen symptom of autism begin to manifest in Daniel, and I know that as he grows, he'll progress and regress until in early adulthood he'll settle into the level of functioning he'll carry his lifetime. The pattern in the kaleidoscope changes - no less beautiful, but different. Oh, maybe I like a little more green or yellow in the pattern than this one has, but I can't deny that the colors are spectacular as they are, and the pattern is exquisite and intricate. Without God's Hand in it, though, it would just be broken glass in a tube. Do you understand what I'm saying? It's God's Hand that makes it beautiful. Because I trust His Heart for Daniel, I trust that however the pattern turns, He will make it into something beautiful."
To be continued.....
Saturday, April 11, 2009
Joy along the Journey
Today is the 7th anniversary of Daniel's diagnosis with autism. So, in honor of that - a little joy along the journey:
Sometimes, Autism makes for hilarious moments. The following is an e-mail that I sent out about two years ago after just such a moment.
Oy. Just oy. Okay, I have to share this because it was so stinking funny I almost burst a gut trying NOT to laugh....but oy! What's a Mama to do????
Tonight, Daniel was sitting in front of the TV doing something - he wasn't watching TV, just doing something on the floor in front of it. The TV was on - Joel was watching something and had gotten up to come to the kitchen to help me with something. He'd left the TV on the channel he was watching and a commercial came on for "Meet the Fokkers". During the COMMERCIAL, one of the characters said something like, "I'm going to kick your A**!" Welllllllll...
My son, the dear echolalic boy, said, "Mom, I'm going to kick your A**!" and I reacted, naturally, with a shocked expression - mouth open, voice slightly raised, "DANIEL!!"...He then decided he'd said the wrrrrrooonnngggggg thing and promptly corrected it by saying, "Oh, um, I mean, I'm going to KISS your A**, Mom!"
Well, ladies and germs, my dear husband - the pillar of support that he is - ran to the laundry room so's not to be visible to our dear son, and dissolved into laughter. Yours truly strained every muscle in her stomach, throat, back, etc. trying to talk to him about the inappropriateness of that word (and I had to explain WHICH word was the wrong one!) without cracking a smirk. I'm here to tell you it was the hardest thing I've ever done. I may never get back the full range of motion of my giggle box.
After I'd sufficiently impressed upon my precious one the importance of never, ever, ever so-long-as-we-both-shall-live-EVER saying that word again (especially at school, or, gasp! Heaven forbid - CHURCH!), and he'd fully grasped the severity of the situation, been forgiven and soundly kissed, I exited stage left and joined my husband on the laundry room floor in a hysterical heap of SILENT, wheezing, tears rolling laughter.
Okay, yes, we're bad. We're also insanebutinagoodway. So, give us a break.
And if you hear our son say that word...he didn't hear it from us! Scouts honor!
Sometimes, Autism makes for hilarious moments. The following is an e-mail that I sent out about two years ago after just such a moment.
Oy. Just oy. Okay, I have to share this because it was so stinking funny I almost burst a gut trying NOT to laugh....but oy! What's a Mama to do????
Tonight, Daniel was sitting in front of the TV doing something - he wasn't watching TV, just doing something on the floor in front of it. The TV was on - Joel was watching something and had gotten up to come to the kitchen to help me with something. He'd left the TV on the channel he was watching and a commercial came on for "Meet the Fokkers". During the COMMERCIAL, one of the characters said something like, "I'm going to kick your A**!" Welllllllll...
My son, the dear echolalic boy, said, "Mom, I'm going to kick your A**!" and I reacted, naturally, with a shocked expression - mouth open, voice slightly raised, "DANIEL!!"...He then decided he'd said the wrrrrrooonnngggggg thing and promptly corrected it by saying, "Oh, um, I mean, I'm going to KISS your A**, Mom!"
Well, ladies and germs, my dear husband - the pillar of support that he is - ran to the laundry room so's not to be visible to our dear son, and dissolved into laughter. Yours truly strained every muscle in her stomach, throat, back, etc. trying to talk to him about the inappropriateness of that word (and I had to explain WHICH word was the wrong one!) without cracking a smirk. I'm here to tell you it was the hardest thing I've ever done. I may never get back the full range of motion of my giggle box.
After I'd sufficiently impressed upon my precious one the importance of never, ever, ever so-long-as-we-both-shall-live-EVER saying that word again (especially at school, or, gasp! Heaven forbid - CHURCH!), and he'd fully grasped the severity of the situation, been forgiven and soundly kissed, I exited stage left and joined my husband on the laundry room floor in a hysterical heap of SILENT, wheezing, tears rolling laughter.
Okay, yes, we're bad. We're also insanebutinagoodway. So, give us a break.
And if you hear our son say that word...he didn't hear it from us! Scouts honor!
Thursday, April 9, 2009
Journey continuted..
In the 6 years and 17 days (actually 6 years 363 days as of today) since Daniel's official diagnosis on April 11, 2002, we've watched Daniel progress from a child who was barely verbal with behaviors that were glaringly autistic to the trained eye - strange and eccentric to the untrained eye - to a highly verbal, incredibly bright child who has astounded everyone with his growth and capacity for learning. We've watched those who were unsure or afraid of his presence simply due to his Autism label be captured by his personality and fall deeply in love with him, and begin to advocate for him along with me. We've watched him charm strangers, opening doors for us to educate them about autism, and about the awesome Hand of God in his life.
Daniel is an incredible, strong little boy who still loves trains (although he's a little embarrassed to play with his Thomas toys now - he hides in his room to play with them), Hot Wheels cars, and Bionicles. He loves his big brother, displays compassion and empathy, enjoys humor, makes eye contact, excels in the classroom (with help from his amazing IEP team), loves music and dancing. He tells me I'm his best friend, and compliments strangers on their hair styles. He brings me dandelion flowers insisting I put them behind my ear, then tells me I look like a 'real girl'. A few years ago, after I'd had a pretty drastic haircut, he told me, "Nice hair, Mom. Pity about your face, though." He'd echoed it from a movie, but generalized it appropriately. I was thrilled.
We still have a long way to go on our journey. It's the journey of a lifetime; a long, long road. Autism always is. We still see delays and deficits. We see splinter skills and weaknesses. The wonderful thing about long journeys on long, long roads is that when you're tired or frustrated, you can stand in the middle of that road, and instead of looking at how very far you've left to go, you can turn around and see how very far you've come. We have so many wonderful blessings. We have so many joyous memories, so many little victories that we took the time to notice and applaud, and we know that many more will come. Autism gave us that.
Autism gave us the ability to notice things that many parents don't see - simply because life gets in the way. Autism gave us eyes that see that miracles aren't always earth shaking events. Miracles can be tiny, and silent, but no less heart soaring. We also know that we'll still face obstacles, ignorance, and probably even bullies. We know Daniel may face discrimination. We know people who have no tolerance for differences. But we know we will overcome it all together. We'll discover new ways of laughing and caring that many people are never blessed enough to find. For that, I am so grateful.
Daniel is an incredible, strong little boy who still loves trains (although he's a little embarrassed to play with his Thomas toys now - he hides in his room to play with them), Hot Wheels cars, and Bionicles. He loves his big brother, displays compassion and empathy, enjoys humor, makes eye contact, excels in the classroom (with help from his amazing IEP team), loves music and dancing. He tells me I'm his best friend, and compliments strangers on their hair styles. He brings me dandelion flowers insisting I put them behind my ear, then tells me I look like a 'real girl'. A few years ago, after I'd had a pretty drastic haircut, he told me, "Nice hair, Mom. Pity about your face, though." He'd echoed it from a movie, but generalized it appropriately. I was thrilled.
We still have a long way to go on our journey. It's the journey of a lifetime; a long, long road. Autism always is. We still see delays and deficits. We see splinter skills and weaknesses. The wonderful thing about long journeys on long, long roads is that when you're tired or frustrated, you can stand in the middle of that road, and instead of looking at how very far you've left to go, you can turn around and see how very far you've come. We have so many wonderful blessings. We have so many joyous memories, so many little victories that we took the time to notice and applaud, and we know that many more will come. Autism gave us that.
Autism gave us the ability to notice things that many parents don't see - simply because life gets in the way. Autism gave us eyes that see that miracles aren't always earth shaking events. Miracles can be tiny, and silent, but no less heart soaring. We also know that we'll still face obstacles, ignorance, and probably even bullies. We know Daniel may face discrimination. We know people who have no tolerance for differences. But we know we will overcome it all together. We'll discover new ways of laughing and caring that many people are never blessed enough to find. For that, I am so grateful.
Wednesday, April 8, 2009
More of our Journey...
Posting at almost midnight because I can't sleep. I'll pay for this tomorrow! ha! Here goes:
I'd called my friend to come to my computer and look at the information I was reading. She didn't say anything, just offered a comforting hug and hand on my shoulder as I read. I printed out the questionnaire I'd completed and took it home with me.
That chilly December afternoon, I called a lady from the IEP team at the school system's central office and told her, "Mrs. C., I think Daniel may have autism." She replied, "I'm so glad you found this information on your own. We were just about to call you for another IEP meeting to request an evaluation We've been seeing the red flags for a few months now, but wanted to give him a chance at speech/language therapy to see how he did. When he didn't progress, we knew the time had come to have him evaluated." Quietly, as she explained the process and the delays they'd seen in Daniel, I covered my mouth with a trembling hand and wept.
That afternoon, I picked my boys up from school and daycare, hugged them a little tighter, and started making phone calls. After several phone calls to different agencies, and after my family had all gone to bed, I walked into my laundry room, exhausted, and fell to my knees. I began to cry, and I beat up a laundry basket in anger. I wiped my face and nose on someone's dirty sock. I hurt. I ached. I longed for my son. I grieved. But I couldn't pray. I was angry, so I wrote. As I wrote, God spoke and calmed my fears. Like the Loving Father He is, He patted my back, and with His still, small Voice said, "I know, child. I know." This is what I wrote that night. I hope you'll see God moving through the emotions.
I'm afraid he'll hurt.
I'm afraid he'll cry -
and I'm afraid someday
he might ask me why....
and I won't have an answer.
Ah, but God knows.
Oh, what a specter!
Such an evil thing
has cast us in the shadow
of it's awful blackened wing...
and all within me hates it.
Ah, but God knows.
Tomorrow seems uncertain.
Is his future bleak?
I'm not sure I've got enough...
my faith just feels so weak...
and I don't know how to help him.
Ah, but God knows.
Soon dawn will be breaking
beginning a new day.
I sit before Him weeping -
since I just can't seem to pray...
and my mommy's heart is broken.
Ah, but God knows.
God knows the pain.
He's felt every sorrow.
He sees broken dreams -
He holds our tomorrows...
and I can't help but praise Him!
Ah, but God knows.
God knows!
And with that, I walked across the Bridge of Nevertheless. Nevertheless, not my will, but Yours be done, Lord. I have the word posted all over my house. My faith is very important to me, my reliance on God a very real part of my life. In the beginning, Nevertheless was a reminder that God's Will will never harm us, even if it sometimes hurts. Today, it stands as a reminder of the miracles He has brought into our lives and home.
I'd called my friend to come to my computer and look at the information I was reading. She didn't say anything, just offered a comforting hug and hand on my shoulder as I read. I printed out the questionnaire I'd completed and took it home with me.
That chilly December afternoon, I called a lady from the IEP team at the school system's central office and told her, "Mrs. C., I think Daniel may have autism." She replied, "I'm so glad you found this information on your own. We were just about to call you for another IEP meeting to request an evaluation We've been seeing the red flags for a few months now, but wanted to give him a chance at speech/language therapy to see how he did. When he didn't progress, we knew the time had come to have him evaluated." Quietly, as she explained the process and the delays they'd seen in Daniel, I covered my mouth with a trembling hand and wept.
That afternoon, I picked my boys up from school and daycare, hugged them a little tighter, and started making phone calls. After several phone calls to different agencies, and after my family had all gone to bed, I walked into my laundry room, exhausted, and fell to my knees. I began to cry, and I beat up a laundry basket in anger. I wiped my face and nose on someone's dirty sock. I hurt. I ached. I longed for my son. I grieved. But I couldn't pray. I was angry, so I wrote. As I wrote, God spoke and calmed my fears. Like the Loving Father He is, He patted my back, and with His still, small Voice said, "I know, child. I know." This is what I wrote that night. I hope you'll see God moving through the emotions.
I'm afraid he'll hurt.
I'm afraid he'll cry -
and I'm afraid someday
he might ask me why....
and I won't have an answer.
Ah, but God knows.
Oh, what a specter!
Such an evil thing
has cast us in the shadow
of it's awful blackened wing...
and all within me hates it.
Ah, but God knows.
Tomorrow seems uncertain.
Is his future bleak?
I'm not sure I've got enough...
my faith just feels so weak...
and I don't know how to help him.
Ah, but God knows.
Soon dawn will be breaking
beginning a new day.
I sit before Him weeping -
since I just can't seem to pray...
and my mommy's heart is broken.
Ah, but God knows.
God knows the pain.
He's felt every sorrow.
He sees broken dreams -
He holds our tomorrows...
and I can't help but praise Him!
Ah, but God knows.
God knows!
And with that, I walked across the Bridge of Nevertheless. Nevertheless, not my will, but Yours be done, Lord. I have the word posted all over my house. My faith is very important to me, my reliance on God a very real part of my life. In the beginning, Nevertheless was a reminder that God's Will will never harm us, even if it sometimes hurts. Today, it stands as a reminder of the miracles He has brought into our lives and home.
Tuesday, April 7, 2009
Journey continued
We were contacted by one of the speech/language pathologists who'd evaluated Daniel and asked to attend an IEP meeting to set up speech/language services to begin as soon as possible. Our meeting was scheduled for September 11, 2001.
On September 9, 2001, Joel's father, David, passed away en route to the hospital. He'd suffered with heart problems for several years, and his passing wasn't completely unexpected, albeit heart-rending in it's suddenness. We began funeral arrangements and forgot to postpone our IEP meeting. On the evening of Sept. 10, 2001, with the funeral scheduled for the next afternoon at 2 p.m., I remembered the IEP meeting scheduled for the next morning at 9 am. We decided to go ahead and attend the meeting.
The morning of Sept. 11th, as we dressed, our phone rang. Ianswered to hear my husband's sister's frantic voice, "Turn on the television! Any channel!" We did so, only to sink down onto our knees as we watched a plane slam into the World Trade Center.
Like zombies, we attended the meeting. The IEP team was told of David's death, and we'd all seen the horrifying events beginning to unfold in our nation. Quickly, they explained the results of the evaluation, and their plans for serving him in his daycare. I vaguely remember words such as "severe language delay", "this level of disability", and I remember that they'd said my 4.1 year old son had the overall language abilities of a 1.7 year old. Thankfully, mercifully, they ended the meeting quickly, understanding our state of mind and heart as we also understood theirs. We were all grieving.
Joel and I barely spoke on the way home. We rushed in to turn on the television to see what was happening in Manhattan only to sink again onto our knees and weep as we watched a second plane slam into the second tower. Joel would mention later that day as we got into our car for the procession to the cemetary that he felt he'd been robbed the chance to grieve his father's death as he was now grieving for thousands. I nodded, silent. I understood all too well his emotions.
It wasn't until days later, when we'd had to tear ourselves away from newscasts showing the horrific scenes over and over, that we finally discussed the things we'd been told at the IEP meeting. We felt we had an understanding of Daniel's troubles, and the speech/language therapy would be able to help.
I poured myself into teaching Daniel new words. As we moved through our days, I'd label everything and ask Daniel to repeat it.
"Daniel, that's a barn. Can you say barn?"
"Barn", he'd say.
"Good job!" I'd squeal.
Daniel began speech/language therapy in mid-September. By early December, he'd made NO progress. I began wondering what could possibly be the reason he wasn't learning like we'd expected. I'd also begun to notice the strange little behaviors - his fascination with lining up cars, trains, spinning things, his tantrums...things I didn't remember Davey being fascinated with or doing at Daniel's age. I knew something was wrong, different, but I didn't know what.
I began to search for what could possibly be affecting my son's learning, his behavior. I read about language delays. That fit, but not completely. I read about ADD/ADHD. That didn't quite fit. I looked everywhere, and was at a loss. Finally, at work one day, I was discussing it with a friend, telling her all of the things I'd researched and how none really fit Daniel. She listened, and then quietly said, "Maybe it's autism."
I'm sure my mouth dropped open, "Autism?! No way my son is autistic. My son is NOT autistic." In my mind's eye, I saw Rain Man. I'd seen the movie several times before and adored Dustin Hoffman's character. My son wasn't like that, though. Still, I turned to my computer, and signed onto the internet to look it up - if only to prove my friend wrong. I did a search for autism, and found a website with an online questionnaire (childbrain.com) that I could complete and they would score it for me. I read the information about autism, and began to cry.
I was reading about my son. So many of the descriptions fit him so perfectly. Not everything, but so many things. I filled out the questionnaire, the computer scored it - Mild PDD (Pervasive Developmental Disorder). I knew it wasn't an official diagnosis, but I knew I had to look in this direction for my son. That was December 10, 2001.
On September 9, 2001, Joel's father, David, passed away en route to the hospital. He'd suffered with heart problems for several years, and his passing wasn't completely unexpected, albeit heart-rending in it's suddenness. We began funeral arrangements and forgot to postpone our IEP meeting. On the evening of Sept. 10, 2001, with the funeral scheduled for the next afternoon at 2 p.m., I remembered the IEP meeting scheduled for the next morning at 9 am. We decided to go ahead and attend the meeting.
The morning of Sept. 11th, as we dressed, our phone rang. Ianswered to hear my husband's sister's frantic voice, "Turn on the television! Any channel!" We did so, only to sink down onto our knees as we watched a plane slam into the World Trade Center.
Like zombies, we attended the meeting. The IEP team was told of David's death, and we'd all seen the horrifying events beginning to unfold in our nation. Quickly, they explained the results of the evaluation, and their plans for serving him in his daycare. I vaguely remember words such as "severe language delay", "this level of disability", and I remember that they'd said my 4.1 year old son had the overall language abilities of a 1.7 year old. Thankfully, mercifully, they ended the meeting quickly, understanding our state of mind and heart as we also understood theirs. We were all grieving.
Joel and I barely spoke on the way home. We rushed in to turn on the television to see what was happening in Manhattan only to sink again onto our knees and weep as we watched a second plane slam into the second tower. Joel would mention later that day as we got into our car for the procession to the cemetary that he felt he'd been robbed the chance to grieve his father's death as he was now grieving for thousands. I nodded, silent. I understood all too well his emotions.
It wasn't until days later, when we'd had to tear ourselves away from newscasts showing the horrific scenes over and over, that we finally discussed the things we'd been told at the IEP meeting. We felt we had an understanding of Daniel's troubles, and the speech/language therapy would be able to help.
I poured myself into teaching Daniel new words. As we moved through our days, I'd label everything and ask Daniel to repeat it.
"Daniel, that's a barn. Can you say barn?"
"Barn", he'd say.
"Good job!" I'd squeal.
Daniel began speech/language therapy in mid-September. By early December, he'd made NO progress. I began wondering what could possibly be the reason he wasn't learning like we'd expected. I'd also begun to notice the strange little behaviors - his fascination with lining up cars, trains, spinning things, his tantrums...things I didn't remember Davey being fascinated with or doing at Daniel's age. I knew something was wrong, different, but I didn't know what.
I began to search for what could possibly be affecting my son's learning, his behavior. I read about language delays. That fit, but not completely. I read about ADD/ADHD. That didn't quite fit. I looked everywhere, and was at a loss. Finally, at work one day, I was discussing it with a friend, telling her all of the things I'd researched and how none really fit Daniel. She listened, and then quietly said, "Maybe it's autism."
I'm sure my mouth dropped open, "Autism?! No way my son is autistic. My son is NOT autistic." In my mind's eye, I saw Rain Man. I'd seen the movie several times before and adored Dustin Hoffman's character. My son wasn't like that, though. Still, I turned to my computer, and signed onto the internet to look it up - if only to prove my friend wrong. I did a search for autism, and found a website with an online questionnaire (childbrain.com) that I could complete and they would score it for me. I read the information about autism, and began to cry.
I was reading about my son. So many of the descriptions fit him so perfectly. Not everything, but so many things. I filled out the questionnaire, the computer scored it - Mild PDD (Pervasive Developmental Disorder). I knew it wasn't an official diagnosis, but I knew I had to look in this direction for my son. That was December 10, 2001.
Monday, April 6, 2009
More of our Journey
In April, 2001, I took Daniel for a speech and language evaluation with the local school district. He was 3 years 10 months old. As they took him to another room to do the evaluation, I was instructed to wait there & fill out paperwork. As he walked down the hall with them, he began to whimper. Soon, his whimpers became cries, then screams of "No! No!". They wanted to put earphones on him for a hearing test. I'd forgotten to tell them that he was afraid of earphones and loud noises. He covered his ears a lot, and screamed in public bathrooms.
Once in a bathroom at Wal-Mart, he was screaming and crying. An older lady asked me what was wrong. I told her that he just doesn't like the sound of the toilets flushing - I told her I guessed it was loud to him. She snorted and said, "Has that baby ever been in the bathroom with someone you didn't know? Something has happened to that child in a bathroom, and you need to take him to the doctor to see what happened to him!" I just stood there with my mouth open for a second, then I told her, "I assure you he has NEVER been away from me in a public restroom. The noise just scares him!" I was infuriated, and a little scared.
The evaluators weren't able to accomplish anything that day, so they brought him back to me and asked me to get a private hearing test by an audiologist, and to bring him back after his 4th birthday.
I took him to an ENT doctor, and she was unable to even check his ears, so we scheduled a sedated hearing test for the next morning. She asked me to keep him up late that night, wake him early, and not feed him breakfast. The next morning, we arrived with a sleepy, cranky little boy. They administered some form of liquid by mouth (Chloral Hydrate, maybe? I don't remember.) to sedate him, and we were told to wait until he'd gone to sleep. We waited and waited, and waited some more. After over an hour, they administered more of the liquid. He began to get drowsy, and eventually drifted off into sleep. I carried him to a darkened room to do the test. The technician stuck a little electrode into his ear, and he stirred but settled quickly. She was able to successfully complete the testing of that ear. As I rolled him over to do the other ear, he again stirred. We waited until he'd settled and she attempted to insert the electrode into the second ear. He woke up and was immediately wide awake.
The doctor decided to see how Daniel fared in the hearing booth. They allowed me to go inside with him, and he sat in my lap. They warned me not to give any indication that I was hearing anything as they didn't want me inadvertently signaling him. I was careful to sit very still and look straight ahead. He turned toward the sounds appropriately (little monkeys in the corners of the room, lights at the front top and front bottom), and they were able to determine that his hearing was within normal limits.
In August of 2001, I took Daniel back to the evaluators at the school system with ENT results in hand. They were able to conduct their testing this time, and told me they'd contact me with the results.
Once in a bathroom at Wal-Mart, he was screaming and crying. An older lady asked me what was wrong. I told her that he just doesn't like the sound of the toilets flushing - I told her I guessed it was loud to him. She snorted and said, "Has that baby ever been in the bathroom with someone you didn't know? Something has happened to that child in a bathroom, and you need to take him to the doctor to see what happened to him!" I just stood there with my mouth open for a second, then I told her, "I assure you he has NEVER been away from me in a public restroom. The noise just scares him!" I was infuriated, and a little scared.
The evaluators weren't able to accomplish anything that day, so they brought him back to me and asked me to get a private hearing test by an audiologist, and to bring him back after his 4th birthday.
I took him to an ENT doctor, and she was unable to even check his ears, so we scheduled a sedated hearing test for the next morning. She asked me to keep him up late that night, wake him early, and not feed him breakfast. The next morning, we arrived with a sleepy, cranky little boy. They administered some form of liquid by mouth (Chloral Hydrate, maybe? I don't remember.) to sedate him, and we were told to wait until he'd gone to sleep. We waited and waited, and waited some more. After over an hour, they administered more of the liquid. He began to get drowsy, and eventually drifted off into sleep. I carried him to a darkened room to do the test. The technician stuck a little electrode into his ear, and he stirred but settled quickly. She was able to successfully complete the testing of that ear. As I rolled him over to do the other ear, he again stirred. We waited until he'd settled and she attempted to insert the electrode into the second ear. He woke up and was immediately wide awake.
The doctor decided to see how Daniel fared in the hearing booth. They allowed me to go inside with him, and he sat in my lap. They warned me not to give any indication that I was hearing anything as they didn't want me inadvertently signaling him. I was careful to sit very still and look straight ahead. He turned toward the sounds appropriately (little monkeys in the corners of the room, lights at the front top and front bottom), and they were able to determine that his hearing was within normal limits.
In August of 2001, I took Daniel back to the evaluators at the school system with ENT results in hand. They were able to conduct their testing this time, and told me they'd contact me with the results.
Friday, April 3, 2009
Remembering Continued
As an infant, Daniel had developed a fascination with my nose. I’d sit holding him in my rocking chair, giving him his bottle, and he’d sleepily look up at me while he drank. When he began to be able to control his hand movements, he’d started reaching up to touch my face, then my nose. Soon, every time I picked him up, he’d look at and reach for my nose. If I was holding him, his hand was on my nose. As he grew, he continued to reach out for my nose, but it became a need for him. He couldn’t go to sleep unless he touched my nose first. He’d toddle around playing, but would come over to me every few minutes to touch my nose. It was always the same - four fingers on top of my nose, the thumb at the septum, then his index finger would trace my nostrils and he’d turn his hand over to feel my breath on the back of his hand. The look on his face as he followed this routine was one of intense concentration. Often, he would grit his teeth, jutting his lower jaw forward, and place his forehead against mine while his hand explored my nose. His eyes would roll into the back of their sockets as if receiving great pleasure from the touch. I allowed it because friends told me it was his way of comforting himself. I thought it was sweet, a little odd, but I never saw a red flag in it. Interestingly, one of his first complete sentences was, "Mommy, I meed (he couldn’t say Need) to touch your nose." I’d then bend down to his level so that he could do just that. At almost 6 years old, he outgrew his need for my nose. He replaced it with sniffing my cheeks.
He would sniff my cheeks, he would sniff his new toys, other people, everything. He was constantly sniffing something. We began to have to teach him that it’s not polite to walk up and sniff other people, and after much teaching, he eventually learned to ask before sniffing, "Can I smell you?" Strange behavior, yes, but amazingly no one was ever offended by his sniffing. This particular habit came after his diagnosis, however, so I began to explain to people that it was one of the ways he learned about the world around him. Sometimes he would tell the person what they smelled like to him. "You smell like bacon." I would explain to them that he likes bacon so that means he likes the way they smell. One of his beloved teachers always "smells like Christmas" to him (to this day, he says she smells like Christmas - I think he "smells" her love for him). She’s VERY special, wouldn’t you say?
There were other things, so many other things, that should have been red flags to me, to his pediatrician, to his daycare teachers, but we just didn’t see it -rather, we didn't recognize it for what it was. For a long time after his diagnosis, I blamed myself for not seeing it earlier. I knew he was different, uniquely Daniel, but I was enamored of his peculiarities, and not troubled by most of them. Some things did, like screaming in crowds, or his apparent agitated hyperactivity at church fellowships where he seemed to almost vibrate with energy, running like a wild child, making these squealing noises while he "danced" his loose limbed complex whole body movement dances. These things bothered me, but didn’t concern me. To me, he was just "all boy".
He would sniff my cheeks, he would sniff his new toys, other people, everything. He was constantly sniffing something. We began to have to teach him that it’s not polite to walk up and sniff other people, and after much teaching, he eventually learned to ask before sniffing, "Can I smell you?" Strange behavior, yes, but amazingly no one was ever offended by his sniffing. This particular habit came after his diagnosis, however, so I began to explain to people that it was one of the ways he learned about the world around him. Sometimes he would tell the person what they smelled like to him. "You smell like bacon." I would explain to them that he likes bacon so that means he likes the way they smell. One of his beloved teachers always "smells like Christmas" to him (to this day, he says she smells like Christmas - I think he "smells" her love for him). She’s VERY special, wouldn’t you say?
There were other things, so many other things, that should have been red flags to me, to his pediatrician, to his daycare teachers, but we just didn’t see it -rather, we didn't recognize it for what it was. For a long time after his diagnosis, I blamed myself for not seeing it earlier. I knew he was different, uniquely Daniel, but I was enamored of his peculiarities, and not troubled by most of them. Some things did, like screaming in crowds, or his apparent agitated hyperactivity at church fellowships where he seemed to almost vibrate with energy, running like a wild child, making these squealing noises while he "danced" his loose limbed complex whole body movement dances. These things bothered me, but didn’t concern me. To me, he was just "all boy".
Thursday, April 2, 2009
Remembering...
I sit here typing these memories, and thinking back to the days when I first started noticing something - that elusive something - that wasn’t quite where it should be with Daniel. I remember asking his pediatrician at a little over a year old if I should be concerned that Daniel only spoke a few words. I remember the doctor smiling and telling me, "He’s the baby. He has an older brother who speaks very well. He just doesn’t have to talk. He’ll catch up." I remember being reassured and a little pleased that Daniel’s babyhood wasn’t quite past.
I don’t remember other symptoms or signs during that time. I look back at my diaries and see where he had the occasional bout of sleeplessness, but nothing profound jumps out at me. He seemed just like any other infant turned toddler, except he didn’t say quite as much.
At two, I asked the doctor again if I should be concerned, and was told basically the same thing. At three, I was worried. I took him to the doctor for a checkup, and asked again. This time he said we should stop talking for Daniel and make him repeat us, but we shouldn’t worry as there weren’t really other indications of any serious delays.
At almost four, I took Daniel to the doctor and insisted on a referral for a speech/language evaluation. Daniel echoed some of the words we said, but still didn’t often spontaneously speak more than one or two words at a time - never sentences. He’d also begun to use this strange gibberish sounding speech. I called it "fill-in words". I didn’t know what else to call it. He’d attempt to make a sentence, but just didn’t have the vocabulary to do it, so he’d say the one or two words he knew, and fill in the rest with the gibberish. Later, I learned that this is called jargon speech, and the echoing he did is called echolalia, and they are both ’red flags’ of autism.
During this same time, Daniel had begun lining up his Hot Wheels cars in a long, single-file line from my kitchen to my living room. He’d make sure they were meticulously straight, and organized by color or style, sometimes both. If we moved one car, or accidentally knocked one crooked, he’d scream as if we were beating him.
He’d also begun the bizarre behavior of bending forward at the waist, putting his forehead on the floor, hands extended behind his back, and he’d walk around the room that way - head against the floor, like a big inverted V.
He had taken to spinning himself, or little beaded dog-tag style chains held in front of his eyes, almost constantly. He wouldn’t look at me and hold my gaze anymore. His eye contact pattern was more of a look/look away/look/look away style. It disturbed me.
He was in daycare at this time, and he didn’t play with the other children. He walked around the periphery of the playground, always alone. He was hard to control in class and the teacher was at her wit’s end. He insisted on sameness as much as possible, and often screamed or cried when something changed. Once, at 3 years old, his teacher had gone on vacation, and a substitute was brought in to fill her place for the week. I had surgery during this week, so things were a little different at home as well. The day after my surgery, I received a phone call from the daycare. Daniel had had an accident in his pants and had smeared feces all over himself, the bathroom stall, the floor, and was in the bathroom stall screaming and crying. I wasn’t able to go take care of it, so I called my mother, who rushed there to find him standing in the stall looking wild-eyed and frantic. She calmed him down, cleaned him up, cleaned up the smeared feces, and took him home with her. At the time, I thought the smearing was his attempts at cleaning up his accident. Now I know that it was a cry for help.
I don’t remember other symptoms or signs during that time. I look back at my diaries and see where he had the occasional bout of sleeplessness, but nothing profound jumps out at me. He seemed just like any other infant turned toddler, except he didn’t say quite as much.
At two, I asked the doctor again if I should be concerned, and was told basically the same thing. At three, I was worried. I took him to the doctor for a checkup, and asked again. This time he said we should stop talking for Daniel and make him repeat us, but we shouldn’t worry as there weren’t really other indications of any serious delays.
At almost four, I took Daniel to the doctor and insisted on a referral for a speech/language evaluation. Daniel echoed some of the words we said, but still didn’t often spontaneously speak more than one or two words at a time - never sentences. He’d also begun to use this strange gibberish sounding speech. I called it "fill-in words". I didn’t know what else to call it. He’d attempt to make a sentence, but just didn’t have the vocabulary to do it, so he’d say the one or two words he knew, and fill in the rest with the gibberish. Later, I learned that this is called jargon speech, and the echoing he did is called echolalia, and they are both ’red flags’ of autism.
During this same time, Daniel had begun lining up his Hot Wheels cars in a long, single-file line from my kitchen to my living room. He’d make sure they were meticulously straight, and organized by color or style, sometimes both. If we moved one car, or accidentally knocked one crooked, he’d scream as if we were beating him.
He’d also begun the bizarre behavior of bending forward at the waist, putting his forehead on the floor, hands extended behind his back, and he’d walk around the room that way - head against the floor, like a big inverted V.
He had taken to spinning himself, or little beaded dog-tag style chains held in front of his eyes, almost constantly. He wouldn’t look at me and hold my gaze anymore. His eye contact pattern was more of a look/look away/look/look away style. It disturbed me.
He was in daycare at this time, and he didn’t play with the other children. He walked around the periphery of the playground, always alone. He was hard to control in class and the teacher was at her wit’s end. He insisted on sameness as much as possible, and often screamed or cried when something changed. Once, at 3 years old, his teacher had gone on vacation, and a substitute was brought in to fill her place for the week. I had surgery during this week, so things were a little different at home as well. The day after my surgery, I received a phone call from the daycare. Daniel had had an accident in his pants and had smeared feces all over himself, the bathroom stall, the floor, and was in the bathroom stall screaming and crying. I wasn’t able to go take care of it, so I called my mother, who rushed there to find him standing in the stall looking wild-eyed and frantic. She calmed him down, cleaned him up, cleaned up the smeared feces, and took him home with her. At the time, I thought the smearing was his attempts at cleaning up his accident. Now I know that it was a cry for help.
Wednesday, April 1, 2009
Autism Awareness Month
April is Autism Awareness Month. In keeping with that, the next few blogs will be the tale of our journey with autism. These were originally posted in April 2008. If I need to edit anything, or add a comment, I'll try to remember to change the font color on it. No promises. I'm an old person. I forget.
Daniel was diagnosed in April. What a coincidence. Boy, WE sure became "aware", huh? I was thinking last night and this morning about the days leading up to - and ultimately receiving - his diagnosis. I thought I’d use this blog to write about it some this month. You know, a few years ago, I kept a really detailed diary - of our journey, of his progress, of little victories. Somewhere along the way, I stopped journaling it all down. I’m sad that I let life get in the way of doing that. I wonder what amazing things I’ve forgotten?
Right around the time Daniel was diagnosed - I can’t remember if it was right before or right after, my little cousin Kaitie drew a picture for me at school (I think?). It’s a picture of the sky, the sun, the grass, a flower, a small dark rain cloud and over to one side is a heart with an arrow through it....and the words "Journey of a Lifetime". I remember being amazed that she’d written those words because I’d already begun to think of autism in just those terms. Kaitie was, what? 9 at the time? I still have that picture.
Anyway, if you’re reading my BLAHg, (and if you’re interested...) check back. I’ll be typing out our journey, I think. And if you’re NOT interested...well, it’s all good if "our" journey doesn’t interest you. Just please don’t be uninterested in the epidemic of autism. Don’t be unaware. And certainly don’t be uncaring. There are too many people affected by it for it not to affect you in some way - if even a small one.
So, here we go..
The first (well, technically second) in my BLAHgged series about our journey. I’m just typing out stuff that I’ve previously written down. Once upon a time, someone (several someones) suggested I write a book about our journey...I considered it, prayed about it, looked at all the books that are out there on the topic, and still just don’t know that our journey is any different than countless others - only the names have changed - LOL. Still, I wrote some things down in an effort to see if it was even something I WANTED to do...so, for now, I’ll just share it with you. If God leads, someday maybe I’ll share it with the world. Or maybe not.
Speaking of the world - today is International Autism Awareness Day! Be aware! (World Autism Awareness Day is scheduled for 2 April 2009 this year.)
Here goes:
I watched as she played with Daniel, my baby. She tried to engage him, to seek out his gaze, to play with him. I watched as she clowned with him, trying anything to evoke a response typical of an almost 5 year old child. Then, I watched as she scribbled notes on the clipboard that was never far from her hand. Several times, her glance met my eyes, and I knew she was weighing my emotions; pre-forming the words she’d have to say to tell me what her opinion of my son would be.
Minutes later, we sat across from her, Joel and I. This soft-spoken woman with the equally soft name, Sonya, read the list of criteria that fit Daniel’s idiosyncrasies. She leaned toward us, lowering her voice as if to soften the blow her words would surely bring, and delivered the words I already expected, "It is my opinion that Daniel meets the educational criteria for Autism."
Autism. Daniel has Autism. I knew it. I’d known it for months. I leaned back in my chair watching her as she watched me. I think she expected me to cry, to scream, to deny what she’d just handed me. But, I just sat there looking at her. I heard Joel’s quiet sob and knew he was trying to hold himself together. I patted his knee. Turning toward Sonya, I said the words that officially began the journey we’d unofficially entered two years before, "So, what now?"
Daniel was diagnosed in April. What a coincidence. Boy, WE sure became "aware", huh? I was thinking last night and this morning about the days leading up to - and ultimately receiving - his diagnosis. I thought I’d use this blog to write about it some this month. You know, a few years ago, I kept a really detailed diary - of our journey, of his progress, of little victories. Somewhere along the way, I stopped journaling it all down. I’m sad that I let life get in the way of doing that. I wonder what amazing things I’ve forgotten?
Right around the time Daniel was diagnosed - I can’t remember if it was right before or right after, my little cousin Kaitie drew a picture for me at school (I think?). It’s a picture of the sky, the sun, the grass, a flower, a small dark rain cloud and over to one side is a heart with an arrow through it....and the words "Journey of a Lifetime". I remember being amazed that she’d written those words because I’d already begun to think of autism in just those terms. Kaitie was, what? 9 at the time? I still have that picture.
Anyway, if you’re reading my BLAHg, (and if you’re interested...) check back. I’ll be typing out our journey, I think. And if you’re NOT interested...well, it’s all good if "our" journey doesn’t interest you. Just please don’t be uninterested in the epidemic of autism. Don’t be unaware. And certainly don’t be uncaring. There are too many people affected by it for it not to affect you in some way - if even a small one.
So, here we go..
The first (well, technically second) in my BLAHgged series about our journey. I’m just typing out stuff that I’ve previously written down. Once upon a time, someone (several someones) suggested I write a book about our journey...I considered it, prayed about it, looked at all the books that are out there on the topic, and still just don’t know that our journey is any different than countless others - only the names have changed - LOL. Still, I wrote some things down in an effort to see if it was even something I WANTED to do...so, for now, I’ll just share it with you. If God leads, someday maybe I’ll share it with the world. Or maybe not.
Speaking of the world - today is International Autism Awareness Day! Be aware! (World Autism Awareness Day is scheduled for 2 April 2009 this year.)
Here goes:
I watched as she played with Daniel, my baby. She tried to engage him, to seek out his gaze, to play with him. I watched as she clowned with him, trying anything to evoke a response typical of an almost 5 year old child. Then, I watched as she scribbled notes on the clipboard that was never far from her hand. Several times, her glance met my eyes, and I knew she was weighing my emotions; pre-forming the words she’d have to say to tell me what her opinion of my son would be.
Minutes later, we sat across from her, Joel and I. This soft-spoken woman with the equally soft name, Sonya, read the list of criteria that fit Daniel’s idiosyncrasies. She leaned toward us, lowering her voice as if to soften the blow her words would surely bring, and delivered the words I already expected, "It is my opinion that Daniel meets the educational criteria for Autism."
Autism. Daniel has Autism. I knew it. I’d known it for months. I leaned back in my chair watching her as she watched me. I think she expected me to cry, to scream, to deny what she’d just handed me. But, I just sat there looking at her. I heard Joel’s quiet sob and knew he was trying to hold himself together. I patted his knee. Turning toward Sonya, I said the words that officially began the journey we’d unofficially entered two years before, "So, what now?"
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