Who would you sit with?
I read a blog post a few weeks ago that spoke of an empty bench. You get to choose any person, living or deceased, to share that bench with you for a few minutes. Who would you choose?
Thinking it over, there were several people I would have chosen to have a few more minutes with- share a laugh, a few wise words, an apple pie...but the person I would give more than anything to sit with would be Hunter at 16 months.
I often try and remember his little personality. When I look through his baby book and watch the early movies, he reminds me so much of Peyton..that mischievous little laugh, the smiling eyes, and the "all boy" spirit that brings me so much happiness.
I would love to sit and hold him, and have him really talk to me- he was so verbal at that age, he could tell stories, sing songs, and asked the sweetest questions.
I think I want to be able to see him pre-Autism again to know my mind didn't play tricks on me.
I want to make sure I didn't miss something.
But I think the biggest reason I want to sit with him again is that I feel like I was completely preoccupied during his toddler stage. After PANDAS hit, I spent the next three years analyzing his every move, timed his eye gaze, collected language samples...and in between the "play" there always seemed to be a language target or pragmatic skill thrown in there. Instead of only making forts and rocket ships, we were making social stories about how to share materials and how it isn't nice to knock a friend's fort over or yell at the friend if he didn't play the game the way Hunter wanted. Instead of kicking the soccer ball around to score on one another, I was focused on hand-foot coordination, wondering if he needed physical therapy, too. Instead of coloring on butcher paper and painting in our pajamas to see who could make the biggest mess, we were focusing on building those little finger muscles to help his fine motor skills.
And now I realize that I didn't miss the beginning signs of Autism-
I missed his childhood.
So many doctors told me to stop being a therapist, and just be mom, but I couldn't only be his mom...I had to fix him. And here we are, three years later, and I am still trying to fix him.
We had his kindergarten planning meeting yesterday, and I explained to the staff all of my concerns, worries, frustrations, and hopes for next year. After all of the reassuring, I did feel much better, but the message came again, loud and clear.
"It is great that you advocate for your child...but he is going to be fine! Let him be a kid!"
So if I had the opportunity to sit with Hunter pre-PANDAS, I would make sure he knew that every opportunity we had to play, that may have turned into a learning lesson, was built with love and hope of better days to come.
To true play and honest prayer.
The Words I Would Say- Sidewalk Prophets
http://www.youtube.com/watch?v=8t9u-LOa3OI
Three in the morning, and I'm still awake
So I picked up a pen and a page
And I started writing just what I'd say
If we were face to face
I'd tell you just what you mean to me
Tell you these simple truths
Chorus
Be strong in the Lord
And never give up hope
You're gonna do great things
I already know God's got His hand on You
So don't live life in fear
Forgive and forget
But don't forget why you're here
Take your time and pray
These are the words I would say
Last time we spoke you said you were hurting
And I felt your pain in my heart
I want to tell you that I keep on praying
Love will find you where you are
I know 'cause I've already been there
So please hear these simple truths
Chorus
Say from one simple life to another
I will say come find peace in the Father
Be strong in the Lord
And never give up hope
You're gonna do great things I already know
God's got His hand on You
So don't live life in fear
Forgive and forget
But don't forget why you're here
Take your time and pray
And thank God for each day
His love will find a way
These are the words I would say
Thinking it over, there were several people I would have chosen to have a few more minutes with- share a laugh, a few wise words, an apple pie...but the person I would give more than anything to sit with would be Hunter at 16 months.
I often try and remember his little personality. When I look through his baby book and watch the early movies, he reminds me so much of Peyton..that mischievous little laugh, the smiling eyes, and the "all boy" spirit that brings me so much happiness.
I would love to sit and hold him, and have him really talk to me- he was so verbal at that age, he could tell stories, sing songs, and asked the sweetest questions.
I think I want to be able to see him pre-Autism again to know my mind didn't play tricks on me.
I want to make sure I didn't miss something.
But I think the biggest reason I want to sit with him again is that I feel like I was completely preoccupied during his toddler stage. After PANDAS hit, I spent the next three years analyzing his every move, timed his eye gaze, collected language samples...and in between the "play" there always seemed to be a language target or pragmatic skill thrown in there. Instead of only making forts and rocket ships, we were making social stories about how to share materials and how it isn't nice to knock a friend's fort over or yell at the friend if he didn't play the game the way Hunter wanted. Instead of kicking the soccer ball around to score on one another, I was focused on hand-foot coordination, wondering if he needed physical therapy, too. Instead of coloring on butcher paper and painting in our pajamas to see who could make the biggest mess, we were focusing on building those little finger muscles to help his fine motor skills.
And now I realize that I didn't miss the beginning signs of Autism-
I missed his childhood.
So many doctors told me to stop being a therapist, and just be mom, but I couldn't only be his mom...I had to fix him. And here we are, three years later, and I am still trying to fix him.
We had his kindergarten planning meeting yesterday, and I explained to the staff all of my concerns, worries, frustrations, and hopes for next year. After all of the reassuring, I did feel much better, but the message came again, loud and clear.
"It is great that you advocate for your child...but he is going to be fine! Let him be a kid!"
So if I had the opportunity to sit with Hunter pre-PANDAS, I would make sure he knew that every opportunity we had to play, that may have turned into a learning lesson, was built with love and hope of better days to come.
To true play and honest prayer.
The Words I Would Say- Sidewalk Prophets
http://www.youtube.com/watch?v=8t9u-LOa3OI
Three in the morning, and I'm still awake
So I picked up a pen and a page
And I started writing just what I'd say
If we were face to face
I'd tell you just what you mean to me
Tell you these simple truths
Chorus
Be strong in the Lord
And never give up hope
You're gonna do great things
I already know God's got His hand on You
So don't live life in fear
Forgive and forget
But don't forget why you're here
Take your time and pray
These are the words I would say
Last time we spoke you said you were hurting
And I felt your pain in my heart
I want to tell you that I keep on praying
Love will find you where you are
I know 'cause I've already been there
So please hear these simple truths
Chorus
Say from one simple life to another
I will say come find peace in the Father
Be strong in the Lord
And never give up hope
You're gonna do great things I already know
God's got His hand on You
So don't live life in fear
Forgive and forget
But don't forget why you're here
Take your time and pray
And thank God for each day
His love will find a way
These are the words I would say
Comments
Post a Comment