A State of Confusion
From now on, when I don't consistently blog, consider that a bad sign.
In other words, start praying.
We are in a state of confusion. Months 1, 2, 3....smooth sailing. Feeling like we've got this. Can't believe our dreams of recovery are coming true.
Month 4. Desperate to believe in the course, we blamed our regression on the strep in the house. Read many articles about how the change can last for several weeks. Consulted our docs and were told to throw out the summer data- after all, everything has changed in his little world.
Month 5. Tunnel vision. Attempting to see the light, but stuck at the entrance. Take a few steps forward, pedal many more back. Did we make a mistake? Have we gone too far? Are we missing a crucial piece of the puzzle?
Are we ever going to get better?
This child of ours- he is a confusing little guy. He will wake some mornings with a smile on his face, wrap his arms around me, and kiss me so sweetly. Other mornings, he will slam doors and scream "How dare you!" Wish I knew what caused that shift.
This morning we had wonderful compliance- dropped Paige off at soccer camp, went to play in the "tubes," and thought he would have a great OT session. However, half-way through, the office manager came to me in the waiting room and said, "Are you Hunter's mom?"
She didn't even have to tell me that the therapist needed me- I instinctively got up and went to the back. He had screamed, "I'll kill you!" to the OT, and unfortunately, another little boy mimicked his phrase.
A phrase that he really doesn't even comprehend. Something he picked up from the little boys playing in the classroom, the way little boys do with their action figures.
He followed the phrase with kicking, hitting, yelling...all of those rage behaviors that I thought would be long gone by now.
His afternoon ABA session was a complete FAIL. Basically we paid for two hours of non-compliance.
These last few days, I haven't been focusing on the today- it is more of a futuristic sense of doom. How in the world will this boy start kindergarten in a month? How many more years will we have to endure this non-compliance?
When will it end?
Or will it ever end?
I am not only confused about Hunter's progression/regression, but also how a God who loves so much does not see the need for relief.
How can he leave us continuously hoping, dreaming, believing...
...only to, once again, crush our hearts and our faith?
Someone told me I would cycle through the stages of grief, and they would come full-circle several times throughout this journey. I would say I have surpassed the Denial stage. I know this disorder exists- but maybe I was denying the fact that it would be life-long.
I am back in the anger stage. Angry that we can't have a normal summer like most- I would give anything to drop Hunter off at a sports camp and have him run up to me when it was finished, excited to tell me about all of the fun he had that morning. Paige even asked me this morning why Hunter couldn't go with her to camp...and those answers never come easy for me.
Paige came home from VBS a few weeks ago and said, "Mommy, I heard a story about a boy who has Autism, just like Hunter."
I have never, ever directly said that word to Paige before- she evidently picked it up from an overheard conversation.
I asked her what that word meant, and she said, "Well, just how his brain is different?"
We had a long chat about Autism, its definition, and what it means for our family.
If she would have asked me about Autism this afternoon, I would have feared the unfortunate response I would have given.
Today, Autism has kicked my butt.
I think when I don't write, I bottle all of these ill feelings up inside and then, like tonight, it all explodes in an angry and depressing rant.
But at the same time, it is hard for me to write about defeat.
I cannot let Autism win. As much as it sucks to lose, or to take second in a race, it sucks even more to admit that we may have in fact made a mistake.
Autism itself is a state of confusion- no one can tell us why it exists, how to cure it, and who will be diagnosed one day with a disorder that affects so many aspects of this life.
So all of us parents out there who are attempting to "recover" our children are doing so blindly-
and that is where faith has to come in.
Trying to lift my hands up to the Lord...
because at this point, its the only clear direction we have.
Let Faith Arise- Chris Tomlin
https://www.youtube.com/watch?v=dbNK50T35wY
Be still, there is a healer
His love is deeper than the sea
His mercy, it is unfailing
His arms are fortress for the weak
Let faith arise
Let faith arise
I lift my hands to believe again
You are my refuge, You are my strength
As I pour out my heart
These things, I remember
You are faithful, God, forever
Be still, there is a river
That flows from Calvary's tree
A fountain for the thirsty
Pure grace that washes over me
Let faith arise
Let faith arise
I lift my hands to believe again
You are my refuge, You are my strength
As I pour out my heart
These things, I remember
You are faithful, God, forever
I lift my hands to believe again
You are my refuge, You are my strength
As I pour out my heart
These things, I remember
You are faithful, God, forever
Let faith arise, let faith arise
Open my eyes, open my eyes
Let faith arise, let faith arise
Open my eyes, open my eyes
I lift my hands to believe again
You are my refuge, You are my strength
As I pour out my heart
These things, I remember
You are faithful, God, forever
And I lift my hands to believe again
You are my refuge, You are my strength
As I pour out my heart
These things, I remember
You are faithful, God
You are faithful, God, forever
Let faith arise
In other words, start praying.
We are in a state of confusion. Months 1, 2, 3....smooth sailing. Feeling like we've got this. Can't believe our dreams of recovery are coming true.
Month 4. Desperate to believe in the course, we blamed our regression on the strep in the house. Read many articles about how the change can last for several weeks. Consulted our docs and were told to throw out the summer data- after all, everything has changed in his little world.
Month 5. Tunnel vision. Attempting to see the light, but stuck at the entrance. Take a few steps forward, pedal many more back. Did we make a mistake? Have we gone too far? Are we missing a crucial piece of the puzzle?
Are we ever going to get better?
This child of ours- he is a confusing little guy. He will wake some mornings with a smile on his face, wrap his arms around me, and kiss me so sweetly. Other mornings, he will slam doors and scream "How dare you!" Wish I knew what caused that shift.
This morning we had wonderful compliance- dropped Paige off at soccer camp, went to play in the "tubes," and thought he would have a great OT session. However, half-way through, the office manager came to me in the waiting room and said, "Are you Hunter's mom?"
She didn't even have to tell me that the therapist needed me- I instinctively got up and went to the back. He had screamed, "I'll kill you!" to the OT, and unfortunately, another little boy mimicked his phrase.
A phrase that he really doesn't even comprehend. Something he picked up from the little boys playing in the classroom, the way little boys do with their action figures.
He followed the phrase with kicking, hitting, yelling...all of those rage behaviors that I thought would be long gone by now.
His afternoon ABA session was a complete FAIL. Basically we paid for two hours of non-compliance.
These last few days, I haven't been focusing on the today- it is more of a futuristic sense of doom. How in the world will this boy start kindergarten in a month? How many more years will we have to endure this non-compliance?
When will it end?
Or will it ever end?
I am not only confused about Hunter's progression/regression, but also how a God who loves so much does not see the need for relief.
How can he leave us continuously hoping, dreaming, believing...
...only to, once again, crush our hearts and our faith?
Someone told me I would cycle through the stages of grief, and they would come full-circle several times throughout this journey. I would say I have surpassed the Denial stage. I know this disorder exists- but maybe I was denying the fact that it would be life-long.
I am back in the anger stage. Angry that we can't have a normal summer like most- I would give anything to drop Hunter off at a sports camp and have him run up to me when it was finished, excited to tell me about all of the fun he had that morning. Paige even asked me this morning why Hunter couldn't go with her to camp...and those answers never come easy for me.
Paige came home from VBS a few weeks ago and said, "Mommy, I heard a story about a boy who has Autism, just like Hunter."
I have never, ever directly said that word to Paige before- she evidently picked it up from an overheard conversation.
I asked her what that word meant, and she said, "Well, just how his brain is different?"
We had a long chat about Autism, its definition, and what it means for our family.
If she would have asked me about Autism this afternoon, I would have feared the unfortunate response I would have given.
Today, Autism has kicked my butt.
I think when I don't write, I bottle all of these ill feelings up inside and then, like tonight, it all explodes in an angry and depressing rant.
But at the same time, it is hard for me to write about defeat.
I cannot let Autism win. As much as it sucks to lose, or to take second in a race, it sucks even more to admit that we may have in fact made a mistake.
Autism itself is a state of confusion- no one can tell us why it exists, how to cure it, and who will be diagnosed one day with a disorder that affects so many aspects of this life.
So all of us parents out there who are attempting to "recover" our children are doing so blindly-
and that is where faith has to come in.
Trying to lift my hands up to the Lord...
because at this point, its the only clear direction we have.
Let Faith Arise- Chris Tomlin
https://www.youtube.com/watch?v=dbNK50T35wY
Be still, there is a healer
His love is deeper than the sea
His mercy, it is unfailing
His arms are fortress for the weak
Let faith arise
Let faith arise
I lift my hands to believe again
You are my refuge, You are my strength
As I pour out my heart
These things, I remember
You are faithful, God, forever
Be still, there is a river
That flows from Calvary's tree
A fountain for the thirsty
Pure grace that washes over me
Let faith arise
Let faith arise
I lift my hands to believe again
You are my refuge, You are my strength
As I pour out my heart
These things, I remember
You are faithful, God, forever
I lift my hands to believe again
You are my refuge, You are my strength
As I pour out my heart
These things, I remember
You are faithful, God, forever
Let faith arise, let faith arise
Open my eyes, open my eyes
Let faith arise, let faith arise
Open my eyes, open my eyes
I lift my hands to believe again
You are my refuge, You are my strength
As I pour out my heart
These things, I remember
You are faithful, God, forever
And I lift my hands to believe again
You are my refuge, You are my strength
As I pour out my heart
These things, I remember
You are faithful, God
You are faithful, God, forever
Let faith arise
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