Stop Calling it Autism
Today we met with the director at our preschool, along with our private therapists, Hunter's classroom teacher, and the assistant director who subbed in Hunter's class yesterday. After all of the events that transpired last week, our director wanted to have a meeting to make sure we were all on the same page.
After discussing the incident and our plans to move forward, the conversation turned to Hunter's progression over the year. By the end of the meeting, each person who has been directly involved in Hunter's care and well-being had wet eyes. The compassion and understanding for a child who we all want success for was evident in that room. At the end, I asked our director if she would speak with the principal at our home school prior to the ARD meeting. She offered to even attend; I explained that I felt like so many people hear the word "Autism," and make many assumptions. She asked me, "Is that what they will code him with? Autism?"
My first response in my head was, "yep"...but then I told her, "No, he actually will be coded 'Other Health Impairment' for PANDAS, with an accompanying diagnosis of Autism."
Throughout our meeting, the recurring theme was that we need to let this five-year-old boy have "bad days." Even as adults, we have our ups and downs- some days, I know I can't be the only one thinking, "Just leave me alone!" The director brought up a great point; she said that within ABA therapy, we tend to forget the child development portion and focus strictly on the behaviors and how to remediate them. For example, one day Hunter had a fit b/c he didn't want to sit in a chair for an activity- and he was made to comply with the demand. There are some classroom teachers who allow kids to take off socks and shoes, my cousin sits on a balance ball in his office...we all have vises we have found to help us in a stressful event or just to cope.
Have we really allowed Hunter to cope on his own, when we keep jumping in to change his behavior?
Have we fed into the behaviors by being constantly present...making him feel like he is always watched, and a misstep could lead to a downward spiral?
Peter and I just had the conversation a few nights ago that we need to stop attributing all of the "bad behavior" to Autism.
For it could simply be he's tired...
stressed...
overwhelmed...
or just plain having a five-year-old boy tantrum.
If I truly believe in my heart that an Autoimmune condition is the root of this change, then I need to stop focusing on the label and refuse to call it Autism.
This child of ours has SO much potential. He is trying so hard to communicate with friends, has explored interests beyond our imagination (his latest is basketball- I taught him to dribble this weekend and he ASKS to go out and shoot- he made 23 baskets the other day!). Instead of asking for electronics before bed, he now asks for game night. We played four rounds of Berenstein Bears the other day during Peyton's nap. He will always take the opportunity if given to play an ipad or a tablet, but if given the opportunity to go for a run or a bike ride, I would take the opportunity as well. Those are things that are motivating to the both of us.
Last year during Lent, I said I was going to give up Autism. Live in the moment, focus on the present, etc etc etc.
I need to stop calling it Autism, because when I do,
I don't give up on Autism.
I give up on him.
And Him.
A few pictures that demonstrate the effect God's love can have on others...
Pastor Alan from a local church had called me last week and told me that members of their church had been praying for Hunter- they had made a blanket and every knot represented each person who prayed and is continuing to pray for him. Blown away by the generosity and love from a church we don't even belong to- and proof again that we all are one with God.
Hunter was greeted with several cards, even a McQueen pillow and blanket from one little buddy, when he returned to school last week. These kids amaze me with their resilience and their acceptance!
I Won't Give Up
Jason Mraz
https://www.youtube.com/watch?v=O1-4u9W-bns
When I look into your eyes
It's like watching the night sky
Or a beautiful sunrise
There's so much they hold.
And just like them old stars.
I see that you've come so far.
To be right where you are.
How old is your soul?
Well I won't give up on us.
Even if the skies get rough.
I'm giving you all my love.
Still looking up.
When you're needing your space.
to do some navigating.
I'll be here patiently waiting.
To see what you find.
Cause even the stars they burn.
Some even fall to the earth.
We've got a lot to learn.
God knows we're worth it.
No I won't give up.
I don't want to be someone walks away so easily I'm here to stay
and make the difference that I can make.
Our differences they do a lot to teach us how to use the tools and gifts we got,
yeah we got a lot at stake.
And in the end you're still my (son) at least we did intend for us to work,
we didn't break, we didn't burn,
We had to learn, how to bend, without the world caving in,
I've had to learn what I've got, and what I'm not, and who I am.
I won't give up on us.
even if the skies get rough.
I'm giving you all of my love.
still looking up, still looking up.
I won't give up on us.
God knows I'm tough, He knows.
we've got a lot to learn, God knows we're worth it.
I won't give up on us.
Even if the skies get rough.
I'm giving you all my love.
I'm still looking up.
After discussing the incident and our plans to move forward, the conversation turned to Hunter's progression over the year. By the end of the meeting, each person who has been directly involved in Hunter's care and well-being had wet eyes. The compassion and understanding for a child who we all want success for was evident in that room. At the end, I asked our director if she would speak with the principal at our home school prior to the ARD meeting. She offered to even attend; I explained that I felt like so many people hear the word "Autism," and make many assumptions. She asked me, "Is that what they will code him with? Autism?"
My first response in my head was, "yep"...but then I told her, "No, he actually will be coded 'Other Health Impairment' for PANDAS, with an accompanying diagnosis of Autism."
Throughout our meeting, the recurring theme was that we need to let this five-year-old boy have "bad days." Even as adults, we have our ups and downs- some days, I know I can't be the only one thinking, "Just leave me alone!" The director brought up a great point; she said that within ABA therapy, we tend to forget the child development portion and focus strictly on the behaviors and how to remediate them. For example, one day Hunter had a fit b/c he didn't want to sit in a chair for an activity- and he was made to comply with the demand. There are some classroom teachers who allow kids to take off socks and shoes, my cousin sits on a balance ball in his office...we all have vises we have found to help us in a stressful event or just to cope.
Have we really allowed Hunter to cope on his own, when we keep jumping in to change his behavior?
Have we fed into the behaviors by being constantly present...making him feel like he is always watched, and a misstep could lead to a downward spiral?
Peter and I just had the conversation a few nights ago that we need to stop attributing all of the "bad behavior" to Autism.
For it could simply be he's tired...
stressed...
overwhelmed...
or just plain having a five-year-old boy tantrum.
If I truly believe in my heart that an Autoimmune condition is the root of this change, then I need to stop focusing on the label and refuse to call it Autism.
This child of ours has SO much potential. He is trying so hard to communicate with friends, has explored interests beyond our imagination (his latest is basketball- I taught him to dribble this weekend and he ASKS to go out and shoot- he made 23 baskets the other day!). Instead of asking for electronics before bed, he now asks for game night. We played four rounds of Berenstein Bears the other day during Peyton's nap. He will always take the opportunity if given to play an ipad or a tablet, but if given the opportunity to go for a run or a bike ride, I would take the opportunity as well. Those are things that are motivating to the both of us.
Last year during Lent, I said I was going to give up Autism. Live in the moment, focus on the present, etc etc etc.
I need to stop calling it Autism, because when I do,
I don't give up on Autism.
I give up on him.
And Him.
A few pictures that demonstrate the effect God's love can have on others...
Pastor Alan from a local church had called me last week and told me that members of their church had been praying for Hunter- they had made a blanket and every knot represented each person who prayed and is continuing to pray for him. Blown away by the generosity and love from a church we don't even belong to- and proof again that we all are one with God.
Hunter was greeted with several cards, even a McQueen pillow and blanket from one little buddy, when he returned to school last week. These kids amaze me with their resilience and their acceptance!
I Won't Give Up
Jason Mraz
https://www.youtube.com/watch?v=O1-4u9W-bns
When I look into your eyes
It's like watching the night sky
Or a beautiful sunrise
There's so much they hold.
And just like them old stars.
I see that you've come so far.
To be right where you are.
How old is your soul?
Well I won't give up on us.
Even if the skies get rough.
I'm giving you all my love.
Still looking up.
When you're needing your space.
to do some navigating.
I'll be here patiently waiting.
To see what you find.
Cause even the stars they burn.
Some even fall to the earth.
We've got a lot to learn.
God knows we're worth it.
No I won't give up.
I don't want to be someone walks away so easily I'm here to stay
and make the difference that I can make.
Our differences they do a lot to teach us how to use the tools and gifts we got,
yeah we got a lot at stake.
And in the end you're still my (son) at least we did intend for us to work,
we didn't break, we didn't burn,
We had to learn, how to bend, without the world caving in,
I've had to learn what I've got, and what I'm not, and who I am.
I won't give up on us.
even if the skies get rough.
I'm giving you all of my love.
still looking up, still looking up.
I won't give up on us.
God knows I'm tough, He knows.
we've got a lot to learn, God knows we're worth it.
I won't give up on us.
Even if the skies get rough.
I'm giving you all my love.
I'm still looking up.
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