Tuesday, November 29, 2016
No, Jeff Sessions. No.
The ADA, IDEA part 2 (School-aged Children), and NCLB are arguably the three single-most important pieces of legislation ever passed for children with disabilities in schools.
All three were passed under a Republican President.
***
"I mean, look at all these short-bus kids. How much are we paying to keep them alive? They're never going to contribute anything to society."
"I don't condone violence, but, people don't realize how hard it is to raise a special needs child. I wouldn't have thrown mine off a bridge, but I understand."
“We have created a complex system of federal regulations and laws that have created lawsuit after lawsuit, special treatment for certain children, and that are a big factor in accelerating the decline in civility and discipline in classrooms all over America. I say that very sincerely.”
Arguably the three single-most offensive lines I have heard about children with disabilities.
***
The third quote is from Senator Jeff Sessions. It was said in 2000, arguing against the IDEA part 2.
Today, Mr. Sessions is President-Elect Trump's appointee for US Attorney General.
***
The US Attorney General does not have the power alone to overturn Federal Legislation, but he/she can represent those that wish to. He/she can "lead the charge" to "represent the President or public of the US for legal matters".
***
My parents generation and my generation have fought for these rights. We are responsible for those "Lawsuit after Lawsuit" that have "accelerated the decline in civility and discipline in classrooms all over America."
And we will continue to do so.
***
A bigger and more troubling concern than Jeff Sessions, if there can be one, is that I fear we are losing public perception. We live in a nation that both of our last Presidents openly mocked individuals with disabilities on their campaign trail (remember Obama's "Special Olympics" joke on Jay Leno). We are living in a Nation that celebrates Ann Coulter's use of the word retarded to describe those that disagree with her. A Nation where the phrase "libtard" is seen as a clever quip, protected under "freedom of speech" and not "hate speech" or "fighting words".
I worry for my son and daughter.
I worry for your sons and daughters.
I worry even more for their children.
***
Please, write your Senators and Representatives.
Please write our President and President-Elect.
I beg you.
Our children need it.
Wednesday, March 30, 2016
Centerfold Revisited
I once knew a mom who had a son on the spectrum. It's a familiar story. Her son was developing at normal pace, hitting all the infant milestones, walking and talking, a bright and bubbly young child. Shortly after his second birthday, reportedly within days of receiving his latest round of vaccines, he started to "regress". He lost most of the language he had gained, became distant and isolated, and developed stims and/or tics.
He received his autism diagnosis soon thereafter.
David was a changed boy.
But mom was a warrior. She studied up on every known treatment. She studied up on every diet. She did what she could to lash out and lead the fight against vaccines. She was sad, yet she had the steadfast love it takes to move her child forward in what was presented to her as a devastating and helpless future.
She was determined it would not be David's future.
She even wrote a book or two on the therapies and diets that seemed to work for her son. She lead a "green our vaccines movement". She gave a shit.
And she pissed off a lot of people on the way.
***
Years later, Dave was a "normal" boy. One of her therapies or diets (or a magical concoction of all of them) had worked. She declared him "recovered" and "cured".
And she pissed off a lot of people on the way.
***
A few months after his "recovery", she continued to promote her diet and her therapies. She continued to lead her campaigns against the vaccine industry and their puppet master, Big Pharma.
But David was recovered. He was a normal pre-teen now, a bit quirky, but definitively Neurotypical. She had no reason to stay in the pool, yet she did.She kept fighting for others. Despite the anger and hostility toward her, she remained swimming.
And many would say, pissing in that same pool.
***
A few more months go by and she reveals in an interview with a major magazine that her son had been diagnosed with something called "Landau-Kleffner Disorder", a seizure disorder marked by the loss of many developmental skills around the age of 2 or 3. The interviewer asked "So, your son never had autism, did he?"
And she defended her son. She claimed he met all the benchmarks and criteria for a spectrum diagnosis. He had been seen by many, many doctors that confirmed it. She had done all the therapies recommended by the State and bloggers and DAN! Doctors and school administrators and OTs and dietitians and healers and nutritionists and speech therapists and medicine men and psychiatrists and sports coaches possible... and not a single one ever doubted David's autism.
Until a neurologist identified the seizures.
Landau-Kleffner Disorder was simply a co-morbidity of autism... a phrase we often use.
The thing about Landau-Kleffner disorder, however, is that sometimes it simply goes away... The seizures stop, the language returns, the tics and stims go away. And anti-coagulants and corticosteroids can help along the way.
She asked, if all of the symptoms of autism go away, if none of the benchmarks of a diagnosis apply anymore, if the social skills come back... was he not cured?
And she pissed off a lot more people on the way.
***
Including this blogger.
http://phatjaye.blogspot.com/2012/05/centerfold.html
***
Years later, I was listening to her radio show and she was talking about her non-profit, Generation Rescue, dedicated to helping families with autism.
And I thought to myself... She's still fighting. She has absolutely no dog in this fight anymore, and she is still fighting.
***
And I apologize to her.
Perhaps misguided at times, but never lost passion for her son...
And all of us.
I am sorry, Ms. McCarthy. Thank you for staying in our pool.
***
ed. note - I wrote this piece tonight because we are on the eve of another World Autism Awareness Day and, if you read a lot of blogs, you're going to be inundated with anti Autism Speaks articles. I wanted to highlight other charities if you are looking for a new support system.
Generation Rescue Webpage
More about Landau-Kleffner Syndrome
He received his autism diagnosis soon thereafter.
David was a changed boy.
But mom was a warrior. She studied up on every known treatment. She studied up on every diet. She did what she could to lash out and lead the fight against vaccines. She was sad, yet she had the steadfast love it takes to move her child forward in what was presented to her as a devastating and helpless future.
She was determined it would not be David's future.
She even wrote a book or two on the therapies and diets that seemed to work for her son. She lead a "green our vaccines movement". She gave a shit.
And she pissed off a lot of people on the way.
***
Years later, Dave was a "normal" boy. One of her therapies or diets (or a magical concoction of all of them) had worked. She declared him "recovered" and "cured".
And she pissed off a lot of people on the way.
***
A few months after his "recovery", she continued to promote her diet and her therapies. She continued to lead her campaigns against the vaccine industry and their puppet master, Big Pharma.
But David was recovered. He was a normal pre-teen now, a bit quirky, but definitively Neurotypical. She had no reason to stay in the pool, yet she did.She kept fighting for others. Despite the anger and hostility toward her, she remained swimming.
And many would say, pissing in that same pool.
***
A few more months go by and she reveals in an interview with a major magazine that her son had been diagnosed with something called "Landau-Kleffner Disorder", a seizure disorder marked by the loss of many developmental skills around the age of 2 or 3. The interviewer asked "So, your son never had autism, did he?"
And she defended her son. She claimed he met all the benchmarks and criteria for a spectrum diagnosis. He had been seen by many, many doctors that confirmed it. She had done all the therapies recommended by the State and bloggers and DAN! Doctors and school administrators and OTs and dietitians and healers and nutritionists and speech therapists and medicine men and psychiatrists and sports coaches possible... and not a single one ever doubted David's autism.
Until a neurologist identified the seizures.
Landau-Kleffner Disorder was simply a co-morbidity of autism... a phrase we often use.
The thing about Landau-Kleffner disorder, however, is that sometimes it simply goes away... The seizures stop, the language returns, the tics and stims go away. And anti-coagulants and corticosteroids can help along the way.
She asked, if all of the symptoms of autism go away, if none of the benchmarks of a diagnosis apply anymore, if the social skills come back... was he not cured?
And she pissed off a lot more people on the way.
***
Including this blogger.
http://phatjaye.blogspot.com/2012/05/centerfold.html
***
Years later, I was listening to her radio show and she was talking about her non-profit, Generation Rescue, dedicated to helping families with autism.
And I thought to myself... She's still fighting. She has absolutely no dog in this fight anymore, and she is still fighting.
***
And I apologize to her.
Perhaps misguided at times, but never lost passion for her son...
And all of us.
I am sorry, Ms. McCarthy. Thank you for staying in our pool.
***
ed. note - I wrote this piece tonight because we are on the eve of another World Autism Awareness Day and, if you read a lot of blogs, you're going to be inundated with anti Autism Speaks articles. I wanted to highlight other charities if you are looking for a new support system.
Generation Rescue Webpage
More about Landau-Kleffner Syndrome
Wednesday, January 6, 2016
Hello, World. My Name is Jack and I have Autism
On April 26th, 2012, I started this page with this simple post:
I am a stay at home dad raising a child with high functioning autism. I am many other things, but that statement has come to define me.
It has long since been my goal to coax Jack into writing this with me. Almost 4 years later... That day has arrived.
First, a little history and backstory. I told Jack about "Find My Eyes" about a year ago. He was quite uninterested. And even less interested in me sharing his story (our story) with the world... or at least the small corner of it that read the blog. He also "gave me his blessing" to continue to write, even read a post or two, and continued to be uninterested.
In our house, we recently had the autism talk... at least the one that stuck with Jack. If you didn't read that one, I urge you to take a moment to read it here. It will make a lot of Jack's post make more sense if you read where we are coming from in the explanation of how autism affects Jack.
***
Today is the last day of Winter Break for our school district and we were tasked over the holiday to simply "keep up reading and writing" as homework. This Winter Break has been groundbreaking for us. Jack is really latching on to the idea of Autism being a perspective processing disorder (an explanation I made up). He is taking the time to think about how he is being perceived when I prompt him with "Jack, perspective" or simply "Jack, OPP".
So, this morning I asked him if he would write a blog for me (and all of you) for his daily writing assignment. He first refused, then after I gave him a few choices of other topics, since he had to write something... he relented and gave us this magnum opus.
I present to you a photo (to prove he wrote it himself) and I transcribed it to the blog. I was planning on putting in an editors note that I corrected any spelling errors, but there were none to correct. So, any syntax errors remain and will not have the usual (sic) demarcation.
I asked Jack to answer the following question: "How does Autism and perspective affect me?", and wrote it at the top of the page. I instructed him to answer that question in 5 or 6 sentences.
This is what Jack wrote for us.
The way perspective affects me is that when I don't take meds I go out of control and when I take meds it helps me control myself. My perspective is that when I take my meds I feel like I could puke\vomit. My perspective is that in school I have trouble focusing. My perspective is that I like to be left alone. My perspective is that other people see me annoying. My own perspective is that i'm not smart. My friends perspective is that they find me a good friend. My teachers perspective is that she finds me a good student. My perspective is that I miss my friends.
***
And that was it.
***
That was the most insight I have ever received to Jack and his ability.
I want to say a few things about this before I I share how we discussed this first. Jack is referring to the action of "taking his meds" when he mentioned puking or vomiting, not the way they make him feel (he has "gagged" on the pill from time to time).
What Jack wrote demonstrates that the idea of "perspective" is still something he is learning about... and working on masterfully.
***
I told Jack how much I loved his essay and asked if I could share it with the blog. He told me it was terrible and nobody would want to read it.
I told him that I can only guess (or take my own perspective) of the way he thinks and feels and everyone that reads about him would love his insight. "They want to hear about you from the horse's mouth"
Then I spent a few minutes explaining what "from the horse's mouth" meant... A conversation that he quickly concluded that if he was the horse's mouth, then I must be the opposite... the horse's butt. I explained that it's usually called the horse's ass, and that wasn't quite the conclusion of the idiom explanation I desired, but it was correct.
He said "okay" to share it.
Jack still wanted to know why this was so important? Why would people care so much?
I told him the story of Pandora's box. I told him that once the "box" was opened, all of the information that had been repressed and hidden from the world was available again. All of the mysteries of life, the good and the bad, were "back on the table". I told him that by him telling me about himself, I could gain a better perspective of how he thinks, and feels, and dreams, and wants, and fears, and detests, and combats... and hopes.
"You see, son, Hope was let out of Pandora's box as well. Before she opened that box, the people had no hope in their world"
"Dad, hope is a good thing?"
And, I instantly scripted from The Shawshank Redemption...
"Maybe the best of things."
And I was given permission to open his voice to the world with a simple one word answer:
"Cool"
Yes. Cool indeed.
Image - Jack at the Culver City Film Festival last month where he saw a friends' short film. I think this picture looks quite "authorial"
I am a stay at home dad raising a child with high functioning autism. I am many other things, but that statement has come to define me.
It has long since been my goal to coax Jack into writing this with me. Almost 4 years later... That day has arrived.
First, a little history and backstory. I told Jack about "Find My Eyes" about a year ago. He was quite uninterested. And even less interested in me sharing his story (our story) with the world... or at least the small corner of it that read the blog. He also "gave me his blessing" to continue to write, even read a post or two, and continued to be uninterested.
In our house, we recently had the autism talk... at least the one that stuck with Jack. If you didn't read that one, I urge you to take a moment to read it here. It will make a lot of Jack's post make more sense if you read where we are coming from in the explanation of how autism affects Jack.
***
Today is the last day of Winter Break for our school district and we were tasked over the holiday to simply "keep up reading and writing" as homework. This Winter Break has been groundbreaking for us. Jack is really latching on to the idea of Autism being a perspective processing disorder (an explanation I made up). He is taking the time to think about how he is being perceived when I prompt him with "Jack, perspective" or simply "Jack, OPP".
So, this morning I asked him if he would write a blog for me (and all of you) for his daily writing assignment. He first refused, then after I gave him a few choices of other topics, since he had to write something... he relented and gave us this magnum opus.
I present to you a photo (to prove he wrote it himself) and I transcribed it to the blog. I was planning on putting in an editors note that I corrected any spelling errors, but there were none to correct. So, any syntax errors remain and will not have the usual (sic) demarcation.
I asked Jack to answer the following question: "How does Autism and perspective affect me?", and wrote it at the top of the page. I instructed him to answer that question in 5 or 6 sentences.
This is what Jack wrote for us.
The way perspective affects me is that when I don't take meds I go out of control and when I take meds it helps me control myself. My perspective is that when I take my meds I feel like I could puke\vomit. My perspective is that in school I have trouble focusing. My perspective is that I like to be left alone. My perspective is that other people see me annoying. My own perspective is that i'm not smart. My friends perspective is that they find me a good friend. My teachers perspective is that she finds me a good student. My perspective is that I miss my friends.
***
And that was it.
***
That was the most insight I have ever received to Jack and his ability.
I want to say a few things about this before I I share how we discussed this first. Jack is referring to the action of "taking his meds" when he mentioned puking or vomiting, not the way they make him feel (he has "gagged" on the pill from time to time).
What Jack wrote demonstrates that the idea of "perspective" is still something he is learning about... and working on masterfully.
***
I told Jack how much I loved his essay and asked if I could share it with the blog. He told me it was terrible and nobody would want to read it.
I told him that I can only guess (or take my own perspective) of the way he thinks and feels and everyone that reads about him would love his insight. "They want to hear about you from the horse's mouth"
Then I spent a few minutes explaining what "from the horse's mouth" meant... A conversation that he quickly concluded that if he was the horse's mouth, then I must be the opposite... the horse's butt. I explained that it's usually called the horse's ass, and that wasn't quite the conclusion of the idiom explanation I desired, but it was correct.
He said "okay" to share it.
Jack still wanted to know why this was so important? Why would people care so much?
I told him the story of Pandora's box. I told him that once the "box" was opened, all of the information that had been repressed and hidden from the world was available again. All of the mysteries of life, the good and the bad, were "back on the table". I told him that by him telling me about himself, I could gain a better perspective of how he thinks, and feels, and dreams, and wants, and fears, and detests, and combats... and hopes.
"You see, son, Hope was let out of Pandora's box as well. Before she opened that box, the people had no hope in their world"
"Dad, hope is a good thing?"
And, I instantly scripted from The Shawshank Redemption...
"Maybe the best of things."
And I was given permission to open his voice to the world with a simple one word answer:
"Cool"
Yes. Cool indeed.
Image - Jack at the Culver City Film Festival last month where he saw a friends' short film. I think this picture looks quite "authorial"
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