Things have been relatively steady in the life of Maddy these last couple of months...I wanted to write quiet but anyone who has ever met Maddy knows that she is anything BUT quiet! Yet, for the most part, things have been more of the same. Maddy being her boisterous self and cruising through the summer and turning six years old.
In August she had her yearly evaluation for autism spectrum disorder to make sure she is still classified as being IN REMISSION: Residual State, which she was found to be (praise the Lord) and she also had an academic evaluation as well. This time, she was evaluated by a different reviewer who did not know any of her history. She came in to the testing being viewed as a typical functioning child who just turned six and was entering 1st grade.
This was a huge milestone as given our small town and our network of people, not many people don't know that Maddy is/was on the spectrum. Not many people can look at Maddy innocently as any other six year old. We all look for signs and quirks and ways that maybe that spectrum will show up. It's true. It just is. It's a fact. No one can lie to me and say they have never looked at Maddy and searched her for signs. And it's ok. I expect it. I do it myself. I can't imagine other people not.
And sometimes not knowing history can help other issues come to the eye that may or may not have been seen so clearly.
One of Maddy's quirks is her literal brain. She can be so literal. And in that, we have discovered a learning disability.
Let me back up a bit.
We chose to homeschool last year when Maddy (and Maelle) entered Kindergarten. That choice was based on a very large variety of factors. Many of them due to the nature of our family and how we are such a winter family. We do all of our recreation (dog sledding) in the winter as a family. So having the kids in school during those prime months just didn't work. Another reason, in the very many, was that Maddy needs to be taught with as few distractions as possible for her brain to fully focus. She had previously been mainstreamed in public preschool and did great (she had a great teacher too) but it was very clear that in order for our little social bug to flourish academically, she needed individual instruction without distraction. And given the quickness of her brain, she was often bored and found various ways to get herself in trouble.
The last year I watched Miss Maddy excel at mathematics and flounder at reading. There are too many variables in learning to read. "a" does not always sound like "A" sometimes it sounds like "ay" or "ah" or "uh" depending on each rule. "ph" sounds like 'F'. "Read" can be present or past and said entirely different.
With Math...1 is always 1. it doesn't change form. It is solid and regardless of rules 1 is 1. 1 + 1 always equals 2. There are no substitutions. No exceptions. 1 + 1 = 2 end of story.
We took our time, used a curriculum that is very ABA like so her brain could see the small steps to form the big steps. We would time and time again get to about lesson 60 of 100 and have to start over again as she would become so frustrated that she was in tears.
So when the letter came back yesterday that Maddy has a reading disorder, I wasn't overly shocked. I could see that one coming. What I didn't see was the possibility of a new diagnosis....
Visual Processing Disorder
What is it? Basically there is a disconnect between what her eyes are seeing and what her brain is comprending.
We don't know yet if she has Visual Processing Disorder....she will be scheduled to see a specialist and have evaluations and such.
It was incredibly difficult to read the letter that is usually full of glowing remarks of Maddy and this time to read that her evaluation 1.5 years ago had her above average to now being average and poor in reading.
Many people experience this with their child...your child has a learning disability. okay. you adjust your life and move forward. It is not life threatening. In the grand scheme of things....it is minor. I have friends who are dealing with their daughter having a very life-threatening brain surgery in December and another friend who has a very young son who most likely has some form of muscular dystrophy. So what is the big deal? A learning disability...so what.
Only.
We have been running this race since 2010.
And though I don't post as often. There are still daily issues. She still has oral sensory issues where the kid chews on everything. Everything.
She forgets how loud she talks.
She forgets social norms like personal space.
She has intensely sensitive hearing so we always have to make sure we keep her prepared for loud noises.
She wanders.
Every 90 days she goes through a behavioral regression where she does not sleep and becomes exceptionally difficult.
So no....it's not life threatening.
And I would not change my life for the world and I am incredibly thankful to have her perpetual sunshine in my world!
I just didn't see another sensory issue waiting around the corner.
Yet...look at how far she has come. She spent much of her toddler years trying to become a toddler. Her preschooler years to be up to par and beyond the bar of her peers.
So here we go to another round of testing...and therapy...and tutors.
We will press on. This was never a sprint. This is a marathon. And we may not be marathon runners but we are mushers...and that is a hardy bunch.
So we again ask for prayers as she goes through more evaluations and more testings. We are so thankful for everyone remembering us in this journey. God is Good. He will sustain us. We will press on.
In August she had her yearly evaluation for autism spectrum disorder to make sure she is still classified as being IN REMISSION: Residual State, which she was found to be (praise the Lord) and she also had an academic evaluation as well. This time, she was evaluated by a different reviewer who did not know any of her history. She came in to the testing being viewed as a typical functioning child who just turned six and was entering 1st grade.
This was a huge milestone as given our small town and our network of people, not many people don't know that Maddy is/was on the spectrum. Not many people can look at Maddy innocently as any other six year old. We all look for signs and quirks and ways that maybe that spectrum will show up. It's true. It just is. It's a fact. No one can lie to me and say they have never looked at Maddy and searched her for signs. And it's ok. I expect it. I do it myself. I can't imagine other people not.
And sometimes not knowing history can help other issues come to the eye that may or may not have been seen so clearly.
One of Maddy's quirks is her literal brain. She can be so literal. And in that, we have discovered a learning disability.
Let me back up a bit.
We chose to homeschool last year when Maddy (and Maelle) entered Kindergarten. That choice was based on a very large variety of factors. Many of them due to the nature of our family and how we are such a winter family. We do all of our recreation (dog sledding) in the winter as a family. So having the kids in school during those prime months just didn't work. Another reason, in the very many, was that Maddy needs to be taught with as few distractions as possible for her brain to fully focus. She had previously been mainstreamed in public preschool and did great (she had a great teacher too) but it was very clear that in order for our little social bug to flourish academically, she needed individual instruction without distraction. And given the quickness of her brain, she was often bored and found various ways to get herself in trouble.
The last year I watched Miss Maddy excel at mathematics and flounder at reading. There are too many variables in learning to read. "a" does not always sound like "A" sometimes it sounds like "ay" or "ah" or "uh" depending on each rule. "ph" sounds like 'F'. "Read" can be present or past and said entirely different.
With Math...1 is always 1. it doesn't change form. It is solid and regardless of rules 1 is 1. 1 + 1 always equals 2. There are no substitutions. No exceptions. 1 + 1 = 2 end of story.
We took our time, used a curriculum that is very ABA like so her brain could see the small steps to form the big steps. We would time and time again get to about lesson 60 of 100 and have to start over again as she would become so frustrated that she was in tears.
So when the letter came back yesterday that Maddy has a reading disorder, I wasn't overly shocked. I could see that one coming. What I didn't see was the possibility of a new diagnosis....
Visual Processing Disorder
What is it? Basically there is a disconnect between what her eyes are seeing and what her brain is comprending.
We don't know yet if she has Visual Processing Disorder....she will be scheduled to see a specialist and have evaluations and such.
It was incredibly difficult to read the letter that is usually full of glowing remarks of Maddy and this time to read that her evaluation 1.5 years ago had her above average to now being average and poor in reading.
Many people experience this with their child...your child has a learning disability. okay. you adjust your life and move forward. It is not life threatening. In the grand scheme of things....it is minor. I have friends who are dealing with their daughter having a very life-threatening brain surgery in December and another friend who has a very young son who most likely has some form of muscular dystrophy. So what is the big deal? A learning disability...so what.
Only.
We have been running this race since 2010.
And though I don't post as often. There are still daily issues. She still has oral sensory issues where the kid chews on everything. Everything.
She forgets how loud she talks.
She forgets social norms like personal space.
She has intensely sensitive hearing so we always have to make sure we keep her prepared for loud noises.
She wanders.
Every 90 days she goes through a behavioral regression where she does not sleep and becomes exceptionally difficult.
So no....it's not life threatening.
And I would not change my life for the world and I am incredibly thankful to have her perpetual sunshine in my world!
I just didn't see another sensory issue waiting around the corner.
Yet...look at how far she has come. She spent much of her toddler years trying to become a toddler. Her preschooler years to be up to par and beyond the bar of her peers.
So here we go to another round of testing...and therapy...and tutors.
We will press on. This was never a sprint. This is a marathon. And we may not be marathon runners but we are mushers...and that is a hardy bunch.
So we again ask for prayers as she goes through more evaluations and more testings. We are so thankful for everyone remembering us in this journey. God is Good. He will sustain us. We will press on.
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