Monday, March 21, 2011
Round 2.
So, we just found out the our youngest, Levi Jackson, is on the spectrum as well. He just turned 2. I'm not ready to talk about it yet.
Monday, December 27, 2010
Changing Course
So, I started this Blog forever ago. . . for me. I never really intended for anyone else to read my entries. I think only a handful of people have so far. I started it because I really had no one to talk to about some struggles I was going through with my son. I mean, no one else I knew had a kid diagnosed with autism. No on else I knew had a kid with ANY problems. Most of my friends' kids are younger then my first 2 kids, so I was really on my own for the first few years of this mothering thing. I'm not saying I didn't have a good support system. I did. I still do. I have a wonderful, and fairly large circle of family and wonderful friends- several of whom I could literally call upon at any hour of the day or night. But still, somethings we go through leave us feeling very isolated in our struggles. . .in our fear and doubt. . . in our pain. I felt very much like that when I experienced the devastation of a miscarriage, and again when my son was diagnosed.
Here's the thing. My son wasn't mentally retarded. He also wasn't dying of cancer or something like that. When a diagnosis like that is made, a support system usually whips into high gear. I don't think people really understand what it is like to be sitting in an doctor's office for hours. . . and then to have that doctor turn to you and say the words, "Yes, he has autism" . . . It's kind of like time stops for a moment and you feel yourself being sucked into a black hole for a moment. For that instant you feel nothing and everything at the same time. Somehow you get snapped back into the here and now, and have to deal with the news you've just received.
Then you have to tell other people. You have to call the grandparents, your siblings, your friends. Most people don't understand. How could they? A few people even said they disagreed with the doctors. Some seemed to think I was exaggerating the issue in some way- as if to gain sympathy or something? I don't care WHO you are or WHAT you believe about autism. . . Being looked in the eye by a professional and told your son has autism is a FRIGHTENING EXPERIENCE. It is something you never dream will happen to you. . .and it's something I wouldn't wish on anyone. . .
My son's issues were not as clearly visible to the casual observer. The struggles we went through were very much wrestled with in the privacy of our home, and in the mundane or day-to-day living. I believe it was very much "out-of-sight, out-of-mind" to a majority of people in my life. Even my husband was out-or-touch with a lot of it. Although he was there for the initial diagnosis, he had to work. I was the one who had to spend hour and hour w/ therapists, and on the phone with insurance companies, and driving to and from various appointments. Also, I had a 6 month old daughter at this point too. Life was chaotic. It took awhile to emerge from the fog. . .
Here we are now- 3.5 years after the diagnosis. We have made INCREDIBLE progress. My son is recovering from autism. He's not totally out of the woods, but it is very true now that most people would "never know". . .
I feel as though I have healed a lot from the initial trauma of this experience. I feel as though I have walked through this valley and I'm on the other side finally. We may have a set-back here or there. . .God only knows what the future holds. . .But I feel strong. I feel incredibly grateful to God for seeing us through this.
So, with this very unceremonious blog, I am releasing this. . . I'm releasing it all. It was what it was. . . .it is what it is. . .and it will be what it will be. . . And I'm going to change courses with my blog. I am no longer focusing on just my trials and triumphs with my son. . . .but on my life as a whole. This will always be a piece of the puzzle. But just a piece. There is so much more. I can't wait to see what comes next.
Here's the thing. My son wasn't mentally retarded. He also wasn't dying of cancer or something like that. When a diagnosis like that is made, a support system usually whips into high gear. I don't think people really understand what it is like to be sitting in an doctor's office for hours. . . and then to have that doctor turn to you and say the words, "Yes, he has autism" . . . It's kind of like time stops for a moment and you feel yourself being sucked into a black hole for a moment. For that instant you feel nothing and everything at the same time. Somehow you get snapped back into the here and now, and have to deal with the news you've just received.
Then you have to tell other people. You have to call the grandparents, your siblings, your friends. Most people don't understand. How could they? A few people even said they disagreed with the doctors. Some seemed to think I was exaggerating the issue in some way- as if to gain sympathy or something? I don't care WHO you are or WHAT you believe about autism. . . Being looked in the eye by a professional and told your son has autism is a FRIGHTENING EXPERIENCE. It is something you never dream will happen to you. . .and it's something I wouldn't wish on anyone. . .
My son's issues were not as clearly visible to the casual observer. The struggles we went through were very much wrestled with in the privacy of our home, and in the mundane or day-to-day living. I believe it was very much "out-of-sight, out-of-mind" to a majority of people in my life. Even my husband was out-or-touch with a lot of it. Although he was there for the initial diagnosis, he had to work. I was the one who had to spend hour and hour w/ therapists, and on the phone with insurance companies, and driving to and from various appointments. Also, I had a 6 month old daughter at this point too. Life was chaotic. It took awhile to emerge from the fog. . .
Here we are now- 3.5 years after the diagnosis. We have made INCREDIBLE progress. My son is recovering from autism. He's not totally out of the woods, but it is very true now that most people would "never know". . .
I feel as though I have healed a lot from the initial trauma of this experience. I feel as though I have walked through this valley and I'm on the other side finally. We may have a set-back here or there. . .God only knows what the future holds. . .But I feel strong. I feel incredibly grateful to God for seeing us through this.
So, with this very unceremonious blog, I am releasing this. . . I'm releasing it all. It was what it was. . . .it is what it is. . .and it will be what it will be. . . And I'm going to change courses with my blog. I am no longer focusing on just my trials and triumphs with my son. . . .but on my life as a whole. This will always be a piece of the puzzle. But just a piece. There is so much more. I can't wait to see what comes next.
Wednesday, December 30, 2009
The Binder
That bag had been hanging on the back of the basement door forever. I almost didn't even notice it anymore. I hadn't touched it in months. But, I was doing some cleaning and organizing, so I took it down and started to go through it. In it, was that fat, orange, 3 ring binder. That binder had been my lifeline at one point. I remember the day I bought it.
My 3 year old son had just been diagnosed with autism. I didn't cry. I read. I researched. I bought the binder. One website suggested starting a binder full of "autism stuff". It warned that the parent of an autistic kid would be overwhelmed with information, paperwork, phone numbers, doctors' referrals, etc . . .and that a binder was a necessary tool to tame the chaos.
So I organized the binder. I re-organized the binder. I typed out phone numbers, made lists, made copies, made tabs. . .I flipped through it again and again. I took it with me everywhere. I sat in the waiting room during my son's occupational therapy, and I thumbed through it mindlessly. I took it to the pediatrician, to the psychologist, to the therapist. It sat on my passenger's seat when I ran errands. After all, wasn't it supposed to help tame the chaos? As long as that binder was there, everything was under control.
That binder meant that it wasn't my fault. The autism wasn't my fault. I was a good mom! I mean, just LOOK at that binder! Doesn't that prove it!? Doesn't that prove that I have it all together?!
If only people knew. I think most of the people in my life really had no idea. . . it didn't mean anything to them. It didn't change their life. It wasn't a big deal. It didn't show. . the chaos. . .it was all in the binder.
It's been 2 years since I've looked through that binder. Funny how life went on, even though the binder was forgotten in a blue bag, hanging on the back of the basement door. It seems like another lifetime now, as I read through the pages and pages of psychological evaluations, pamphlets on autism, checklists, and other forms. Somehow, we made it through. It wasn't the binder. No, the binder never listened. The binder didn't care. I found strength in my whispered prayers. I found hope in different pages. Pages of a book written thousands of years ago.
I almost threw that binder away tonight- a gesture of "making it". But, this journey isn't over yet. I may not need the binder anymore, but I think I'll keep it as a reminder. A reminder of how far we've come. . .
My 3 year old son had just been diagnosed with autism. I didn't cry. I read. I researched. I bought the binder. One website suggested starting a binder full of "autism stuff". It warned that the parent of an autistic kid would be overwhelmed with information, paperwork, phone numbers, doctors' referrals, etc . . .and that a binder was a necessary tool to tame the chaos.
So I organized the binder. I re-organized the binder. I typed out phone numbers, made lists, made copies, made tabs. . .I flipped through it again and again. I took it with me everywhere. I sat in the waiting room during my son's occupational therapy, and I thumbed through it mindlessly. I took it to the pediatrician, to the psychologist, to the therapist. It sat on my passenger's seat when I ran errands. After all, wasn't it supposed to help tame the chaos? As long as that binder was there, everything was under control.
That binder meant that it wasn't my fault. The autism wasn't my fault. I was a good mom! I mean, just LOOK at that binder! Doesn't that prove it!? Doesn't that prove that I have it all together?!
If only people knew. I think most of the people in my life really had no idea. . . it didn't mean anything to them. It didn't change their life. It wasn't a big deal. It didn't show. . the chaos. . .it was all in the binder.
It's been 2 years since I've looked through that binder. Funny how life went on, even though the binder was forgotten in a blue bag, hanging on the back of the basement door. It seems like another lifetime now, as I read through the pages and pages of psychological evaluations, pamphlets on autism, checklists, and other forms. Somehow, we made it through. It wasn't the binder. No, the binder never listened. The binder didn't care. I found strength in my whispered prayers. I found hope in different pages. Pages of a book written thousands of years ago.
I almost threw that binder away tonight- a gesture of "making it". But, this journey isn't over yet. I may not need the binder anymore, but I think I'll keep it as a reminder. A reminder of how far we've come. . .
Tuesday, September 1, 2009
We did it :-)
Not sure who was more nervous- me or him! But, we both survived (minus a few tears on my part). Thank you God!
Sunday, August 23, 2009
It's hard enough. . .
It's hard enough to send your kid off to kindergarten. . . hard enough to pack up their little book bag, their fat yellow pencils and blunt tipped scissors. . . their Crayola crayons and glue sticks. It's hard enough to iron their little uniform pants and pick out the right school shoes. It's hard enough to kiss them goodbye and watch them step onto the school bus. It's hard enough to worry about how they're doing, what they're thinking, and if they're ok. It's hard enough to trust that they'll be fine and come home with a smile on their face.
It's hard enough. . . .when your child is normal.
But, when you've spent years struggling to get through to them. . . when you've dedicated months to teaching them how to say "yes" or "no" to a simple question. . . when you've seen them struggle to make sense of the world around them. . .when you've been their protector and their only safe place. . . when you've battled it day and night and have wept tears from the very bottom of your soul. . . and now you have to trust that it's somehow all made a difference. . . it's more than hard enough.
It's terrifying.
And yet, as part of me is nearly paralyzed knowing in 9 days I will be waving goodbye to that bus, I know that on that bus sits a miracle. On that bus is a little boy who has come farther that I had dreamed. On that bus is the person I know will grow up and amaze us all. On that bus is my baby, my son, my heart and soul. And I as I watch that bus pull away. . .as I whisper a prayer and ask the angels to go with him, I will rejoice in what God has done and is doing in that little boy. And I will wait nervously and excitedly for that bus to come back, for the smile and the hug. . . knowing that what was hard enough has now been overcome and will continue to be overcome. . .one day at a time.
It's hard enough. . . .when your child is normal.
But, when you've spent years struggling to get through to them. . . when you've dedicated months to teaching them how to say "yes" or "no" to a simple question. . . when you've seen them struggle to make sense of the world around them. . .when you've been their protector and their only safe place. . . when you've battled it day and night and have wept tears from the very bottom of your soul. . . and now you have to trust that it's somehow all made a difference. . . it's more than hard enough.
It's terrifying.
And yet, as part of me is nearly paralyzed knowing in 9 days I will be waving goodbye to that bus, I know that on that bus sits a miracle. On that bus is a little boy who has come farther that I had dreamed. On that bus is the person I know will grow up and amaze us all. On that bus is my baby, my son, my heart and soul. And I as I watch that bus pull away. . .as I whisper a prayer and ask the angels to go with him, I will rejoice in what God has done and is doing in that little boy. And I will wait nervously and excitedly for that bus to come back, for the smile and the hug. . . knowing that what was hard enough has now been overcome and will continue to be overcome. . .one day at a time.
Friday, June 19, 2009
What NoOne Sees
It's like a delayed reaction.
It was 2 years ago I heard the words, "He has autism".
They were talking about my son.
MY son. . . .my baby. My perfect little baby. My first born. I carried him for 9 months. I labored and delivered him. . . I nursed him, rocked him, snuggled him, sang to him, loved him and dreamed for him.
Autism. Autism? What does that mean? I know what it is- what does it mean to me? to us? to him?
He had just turned 3. He was so smart. He seemed to do everything on time. He laughed, smiled, cooed. He knew all his letters, shapes, and colors at 20 months. He could say words like “puffer fish” and “escalator” before his second birthday. Sure, he was obsessed with storm drains and elevators and vents. “He’s going to be an engineer” we would say. But, the flapping. . .. The stimming. . . This can’t be normal. That nagging, cruel voice in the back of my head. It wouldn’t go away. “Maybe it’s more”.
And it was more. . . More than I even knew at the time. They told me he had autism. . . and I just nodded. We’ll deal with it and he will be fine.
Let’s GO! What do we do first?! I’ll make the calls, we’ll see the specialists, we’ll start the therapy. We’ll be fine. He’ll be fine. This doesn’t have to change anything. This doesn’t have to change him. This doesn’t have to mean anything. This doesn’t have to be- - autism.
I couldn’t sleep. That voice in my head. . 2am. . .autism. . . . 4 am. . .autism. . . . SHUT UP! Give me back my little boy! I look at him and now I hear, “autism”.
He started therapy and I thought that would make it all better. Twenty hours a week we worked with the therapist. But 24/7 I struggled with how to make it work better. It took us 2 months to teach him how to answer a simple question with a “yes” or a “no”. Most moms don’t blink when their3.5 year old kid asks for juice. .. I spent my days just wishing he would. And he did. . .that and so much more. We were thrilled. I thought that was the end. Everyone told me- “he’s doing so much better!” and “you’d never know. . .”
But I know. . .
And now. . . It’s hitting me. Now the tears are coming. He’s 5 now. He’s not “cured”. He has made incredible progress, but there are new obstacles I never thought would be here. New things to overcome. I’m not a bad mom. He’s not a bad kid. Don’t look at me that way. . . .don’t look at him that way.
He’s different. It’s becoming more obvious. I want to reach him. I want to reach deep inside of him and pull him out. But, he goes away. He goes far away and I can’t reach him. He’s my baby. We’ve been connected from the day his heart first began to beat. . .from the day he took his first breath. And I can’t reach him.
And now, my heart is finally breaking. It’s breaking for me. It’s breaking for him. It’s finally realizing
This isn’t over. He’ll have to fight. I’ll have to fight for him. This is just beginning.
Psalm 121
I lift up my eyes to the hills—
where does my help come from?
My help comes from the LORD,
the Maker of heaven and earth.
He will not let your foot slip—
he who watches over you will not slumber;
Indeed he will neither slumber nor sleep.
The LORD watches over you—
the LORD is your shade at your right hand;
the sun will not harm you by day,
nor the moon by night. The LORD will keep you from all harm—
he will watch over your life; the LORD will watch over your coming and going
both now and forevermore.
It was 2 years ago I heard the words, "He has autism".
They were talking about my son.
MY son. . . .my baby. My perfect little baby. My first born. I carried him for 9 months. I labored and delivered him. . . I nursed him, rocked him, snuggled him, sang to him, loved him and dreamed for him.
Autism. Autism? What does that mean? I know what it is- what does it mean to me? to us? to him?
He had just turned 3. He was so smart. He seemed to do everything on time. He laughed, smiled, cooed. He knew all his letters, shapes, and colors at 20 months. He could say words like “puffer fish” and “escalator” before his second birthday. Sure, he was obsessed with storm drains and elevators and vents. “He’s going to be an engineer” we would say. But, the flapping. . .. The stimming. . . This can’t be normal. That nagging, cruel voice in the back of my head. It wouldn’t go away. “Maybe it’s more”.
And it was more. . . More than I even knew at the time. They told me he had autism. . . and I just nodded. We’ll deal with it and he will be fine.
Let’s GO! What do we do first?! I’ll make the calls, we’ll see the specialists, we’ll start the therapy. We’ll be fine. He’ll be fine. This doesn’t have to change anything. This doesn’t have to change him. This doesn’t have to mean anything. This doesn’t have to be- - autism.
I couldn’t sleep. That voice in my head. . 2am. . .autism. . . . 4 am. . .autism. . . . SHUT UP! Give me back my little boy! I look at him and now I hear, “autism”.
He started therapy and I thought that would make it all better. Twenty hours a week we worked with the therapist. But 24/7 I struggled with how to make it work better. It took us 2 months to teach him how to answer a simple question with a “yes” or a “no”. Most moms don’t blink when their3.5 year old kid asks for juice. .. I spent my days just wishing he would. And he did. . .that and so much more. We were thrilled. I thought that was the end. Everyone told me- “he’s doing so much better!” and “you’d never know. . .”
But I know. . .
And now. . . It’s hitting me. Now the tears are coming. He’s 5 now. He’s not “cured”. He has made incredible progress, but there are new obstacles I never thought would be here. New things to overcome. I’m not a bad mom. He’s not a bad kid. Don’t look at me that way. . . .don’t look at him that way.
He’s different. It’s becoming more obvious. I want to reach him. I want to reach deep inside of him and pull him out. But, he goes away. He goes far away and I can’t reach him. He’s my baby. We’ve been connected from the day his heart first began to beat. . .from the day he took his first breath. And I can’t reach him.
And now, my heart is finally breaking. It’s breaking for me. It’s breaking for him. It’s finally realizing
This isn’t over. He’ll have to fight. I’ll have to fight for him. This is just beginning.
Psalm 121
I lift up my eyes to the hills—
where does my help come from?
My help comes from the LORD,
the Maker of heaven and earth.
He will not let your foot slip—
he who watches over you will not slumber;
Indeed he will neither slumber nor sleep.
The LORD watches over you—
the LORD is your shade at your right hand;
the sun will not harm you by day,
nor the moon by night. The LORD will keep you from all harm—
he will watch over your life; the LORD will watch over your coming and going
both now and forevermore.
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