The Season of Hope
This is the season of hope. Jesus was born upon this earth to give us all that precious gift...and it is a virtue that has become a focus of our lives.
I was cleaning out old files in my cabinet this past weekend and I took out the overflowing file folder labeled "Autism." I was curious to see what I had collected over the years, prior to Hunter's own diagnosis.
The first article from 2000 stated that Autism and related conditions "have been estimated to occur in as many as 1 in 500 individuals." Today, that statistic is 1 in 54 boys.
Here's another article that stated that "Autism and PDD occur in approximately 5 to 15 per 10,000 births."
This article made me a little frustrated. Common characteristics...and Hunter doesn't meet the majority.
And then, at the bottom of the stack, was an article entitled: Repeated Storybook Reading as a Language Intervention for Children with Autism. My friend and colleague, Debra, had written a little sticky note that said, "Erika, I thought of you while reading this article." At that point in my career, pre-kids, I had developed a language program for children with phonological processing disorders. We had written a grant and were given money by the state for early intervention. Part of my program included one of my big pushes- literacy for children. I even did case studies on children in my class who developed phonemic awareness and literacy skills from the books and language lessons we did.
Even back then, my career and my life were being shaped for what was to come.
I think the most disappointing factor in reading through all of the stats, articles, and treatment methodologies is that one thing that mirrored an article that would be written today:
The unknown cause and cure.
And that is where hope comes in. Thirteen years have passed since I read about this disorder I didn't know much about. 1 in 500 seemed like an alarming increase at that time...and now my son is one of the 54.
Genetics have been studied, blood work has been analyzed, and foundations have been set up to find the reason behind the neurological shift in our children.
Time has passed, and although we don't know the answer for the cause, we can hypothesize and research until we reach the point of exhaustion. I can handle the unknown, because I feel that our case history has been very telling of the picture that was painted for this change in Hunter.
However, I can't handle 13 years of research and NO CURE. NO ANSWER. NO AFFIRMATIVE LEAD.
And the numbers continue to rise.
So we have to have HOPE. We need to believe that our children WILL recover. They WILL get better.
We WILL fully see our children again.
My cousin, Anne, sent me the most beautiful letter today. It described my feelings to a "t" and I couldn't have asked for that letter on a more perfect day. She told me that one word she would use to describe me from reading the blog is "hopeful." I am glad that comes across, because there are times when I don't feel that way...even this morning, on Christmas Eve, as I scrolled through facebook seeing "normal" holidays, I had a hard time cracking a smile. Unfortunately, this disorder sometimes brings out feelings that I wish I could avoid. Anne, your letter lifted my spirits and your wise words and kind heart opened my eyes again. You reminded me to become "dependent on the Unchanging One."
So even though statistics have changed, characteristics have changed, and research focuses have changed, I do need to give it to the one person who remains consistent in this journey.
Thank you, God, for giving all of us hope.
The Thinking Moms Revolution posted a video tonight about hope, and of course it was perfect as well. Love you all- Merry Christmas!
http://www.youtube.com/watch?v=pcS3YOlVquM#action=share
I was cleaning out old files in my cabinet this past weekend and I took out the overflowing file folder labeled "Autism." I was curious to see what I had collected over the years, prior to Hunter's own diagnosis.
The first article from 2000 stated that Autism and related conditions "have been estimated to occur in as many as 1 in 500 individuals." Today, that statistic is 1 in 54 boys.
And the one that made me chuck the file folder in the recycling bin...
the communication concerns. Hunter's language never regressed. He wasn't born with a language delay...and his 22 words at a year didn't magically appear. He was a typical boy with underlying autoimmune issues that surfaced due to circumstances that we can't change.
And then, at the bottom of the stack, was an article entitled: Repeated Storybook Reading as a Language Intervention for Children with Autism. My friend and colleague, Debra, had written a little sticky note that said, "Erika, I thought of you while reading this article." At that point in my career, pre-kids, I had developed a language program for children with phonological processing disorders. We had written a grant and were given money by the state for early intervention. Part of my program included one of my big pushes- literacy for children. I even did case studies on children in my class who developed phonemic awareness and literacy skills from the books and language lessons we did.
Even back then, my career and my life were being shaped for what was to come.
I think the most disappointing factor in reading through all of the stats, articles, and treatment methodologies is that one thing that mirrored an article that would be written today:
The unknown cause and cure.
And that is where hope comes in. Thirteen years have passed since I read about this disorder I didn't know much about. 1 in 500 seemed like an alarming increase at that time...and now my son is one of the 54.
Genetics have been studied, blood work has been analyzed, and foundations have been set up to find the reason behind the neurological shift in our children.
Time has passed, and although we don't know the answer for the cause, we can hypothesize and research until we reach the point of exhaustion. I can handle the unknown, because I feel that our case history has been very telling of the picture that was painted for this change in Hunter.
However, I can't handle 13 years of research and NO CURE. NO ANSWER. NO AFFIRMATIVE LEAD.
And the numbers continue to rise.
So we have to have HOPE. We need to believe that our children WILL recover. They WILL get better.
We WILL fully see our children again.
My cousin, Anne, sent me the most beautiful letter today. It described my feelings to a "t" and I couldn't have asked for that letter on a more perfect day. She told me that one word she would use to describe me from reading the blog is "hopeful." I am glad that comes across, because there are times when I don't feel that way...even this morning, on Christmas Eve, as I scrolled through facebook seeing "normal" holidays, I had a hard time cracking a smile. Unfortunately, this disorder sometimes brings out feelings that I wish I could avoid. Anne, your letter lifted my spirits and your wise words and kind heart opened my eyes again. You reminded me to become "dependent on the Unchanging One."
So even though statistics have changed, characteristics have changed, and research focuses have changed, I do need to give it to the one person who remains consistent in this journey.
Thank you, God, for giving all of us hope.
The Thinking Moms Revolution posted a video tonight about hope, and of course it was perfect as well. Love you all- Merry Christmas!
http://www.youtube.com/watch?v=pcS3YOlVquM#action=share
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