“You’ll never amount to anything Judith Lyn” my blue-haired Granny muttered, cigarette hanging from her bottom lip, the ever present Dr. Pepper can sitting nearby. Wide-eyed and dumbfounded, I dug my bare toes into the dingy shag carpet of Granny’s trailer. I spent many of my childhood summers in Granny and Paw-Paw’s trailer nestled on the red-clay banks of Lake Texoma, fishing, swimming, working in Granny’s ceramics shop.
Eight years old. Innocent.
Somehow, I knew she was mistaken.
She had a point. I hadn’t exactly been part of the plan. When my mom, already a young mother of two little boys, found out she was pregnant with twins, she cried … tears of worry, not tears of joy. I spent the first year of my life in drafty, Navy housing sparsely furnished by the Red Cross.
Times were hard. I know what it’s like not to have heat. I know what it’s like to be embarrassed because you have to wear your older brother’s hand-me-down clothes to school. Cranky, dysfunctional Granny was in her own way giving me a reality check. Don’t aim too high, Judith Lyn. You won’t be disappointed….
I didn’t believe her…
I just wasn’t wired that way.
So I put my head down and I worked hard. I worked hard enough to get some scholarship money so I could start college. I worked various secretarial jobs to pay tuition. And I graduated.
Passing the C.P.A. exam was the next hurdle. Head down, I worked hard … and I passed.
I spent the next few years building the life that I never should have had. I married a wonderful man and had two beautiful children. If you’re a regular reader of this blog, you already are well acquainted with my beautiful babies. They are my joy. I love them unconditionally. Our life is a blessed one.
But I also love them enough to expect them to do their best … to aim high. And I am enabling them by providing many of the things I wasn’t provided. Encouragement. Financial support. (I know, I know … the psychology of this is all messed up… Don’t worry… I’ve had counseling.)
So when I read articles like the one titled The Truth About Autism that ran in Wired last week, I feel the familiar sensation of shag carpet and low expectations. The article provides insight into the world of a woman by the name of Amanda Baggs by stating …
Autistics like Baggs are now leading a nascent civil rights movement. "I remember in '99," she says, "seeing a number of gay pride Web sites. I envied how many there were and wished there was something like that for autism. Now there is." The message: We're here. We're weird. Get used to it.
This movement is being fueled by a small but growing cadre of neuropsychological researchers who are taking a fresh look at the nature of autism itself. The condition, they say, shouldn't be thought of as a disease to be eradicated. It may be that the autistic brain is not defective but simply different — an example of the variety of human development. These researchers assert that the focus on finding a cure for autism — the disease model — has kept science from asking fundamental questions about how autistic brains function
I must admit that I don’t know Amanda Baggs, I’ve simply read about her on the internet. (Amanda clarifies the history of the evolution of her diagnosis here.) She has every right to live her life on her own terms and be happy in the process. The world is filled with people of all shapes, sizes, colors and mindsets. Diversity is a powerful, wonderful thing.
But when scientists and experts start saying things like the autistic brain is not “defective but simply different” and that the focus on finding a cure for autism has "kept science from asking fundamental questions about how autistic brains function,” I become concerned.
To paraphrase Baggs, Yes, Jack is here. He is weird. Heck, so am I. But his communication system is completely paralyzed. He can’t type. He can’t gesture. He can’t speak. He can't blog or conduct interviews with Wired and CNN. And as his mom, I take exception with acceptance of this as his inevitable state of being.
For both my kids, my expectations are contradictory to the ones that I experienced as a child. My hope for them is that they are happy, healthy and know the sweet satisfaction of reaching their full potential. My job as their mom is to, pardon the overused cliché, give them roots and wings. After all, they will more than likely live the majority of their lives without me around to protect and provide for them.
Accepting limitations.
Thinking of challenges as something warm and fuzzy.
Comparing autism to sexual orientation.
With apologies to Wired and those who embrace this frame of mind… I’m simply not wired to think that way.
Friday, February 29, 2008
Monday, February 25, 2008
Autism: Boston Marathon Training Week 3 --- It's All About Strength
Someday I'll fly
Someday I'll soar
Someday I'll be so damn much more
Cause I'm bigger than my body gives me credit for
~John Mayer
According to a recent article in Runner's World…
Strength training is a smart supplement to a runner's roadwork because it strengthens muscles and joints, which can improve race times and decrease injury risk. "Running faster is easier if your whole body is working with you," says Jim Fischer, head coach of men's cross-country and track at the University of Delaware. "A runner with strong legs but weak arm muscles and weak core muscles will always be slower than a runner with total-body fitness."
That's why runners need a strength-training workout that targets key muscle groups and keeps them balanced
Hmmm. Sounds good.
Realistic for this autism mommy?
You must be joking…
I barely have time to get the minimum amount of marathon-training mileage in. (Just in case you’re worrying about me, my long run this weekend was a nice, ten-miler. The weather was fantastic and I’m not even sore today. Maybe I’ll be able to pull this whole Boston Marathon thing off after all! Anything for Nashoba...)
So, I’ve incorporated a new sort of ABA/PRT/Incidental Teaching Hybrid Strength Training Program into my everyday life…
Thought you might want to take a peek…
Laugh if you want. The kid's almost a fifty pounder!
Someday I'll soar
Someday I'll be so damn much more
Cause I'm bigger than my body gives me credit for
~John Mayer
According to a recent article in Runner's World…
Strength training is a smart supplement to a runner's roadwork because it strengthens muscles and joints, which can improve race times and decrease injury risk. "Running faster is easier if your whole body is working with you," says Jim Fischer, head coach of men's cross-country and track at the University of Delaware. "A runner with strong legs but weak arm muscles and weak core muscles will always be slower than a runner with total-body fitness."
That's why runners need a strength-training workout that targets key muscle groups and keeps them balanced
Hmmm. Sounds good.
Realistic for this autism mommy?
You must be joking…
I barely have time to get the minimum amount of marathon-training mileage in. (Just in case you’re worrying about me, my long run this weekend was a nice, ten-miler. The weather was fantastic and I’m not even sore today. Maybe I’ll be able to pull this whole Boston Marathon thing off after all! Anything for Nashoba...)
So, I’ve incorporated a new sort of ABA/PRT/Incidental Teaching Hybrid Strength Training Program into my everyday life…
Thought you might want to take a peek…
Laugh if you want. The kid's almost a fifty pounder!
Friday, February 22, 2008
Autism: Meet Me in DC
I'm asking you to believe. Not just in my ability to bring about real change in Washington. I'm asking you to believe in yours...
~Barack Obama
Pack your bags, call your mother-in-law to watch the kids and meet me in DC on March 14th. The Interagency Autism Coordinating Committee is meeting and this time, the meeting is open to the public.
Seriously, I am hoping I can figure out a way to go...
******
A meeting of the Interagency Autism Coordinating Committee [under the Combating Autism Act of 2006 (P.L. 109-416)] will take place on Friday, March 14, 2008 from 9:00 a.m. to 4:00 p.m. at the Ronald Reagan Building and International Trade Center, Rotunda Room, 1300 Pennsylvania Avenue, NW, Washington, DC 20004.
The meeting will be open to the public, with attendance limited to space available. Individuals who plan to attend and need special assistance, such as sign language interpretation or other reasonable accommodations, should indicate these needs when registering for the meeting. The registration website can be found at the link below:
https://www.infinityconferences.com/InfiniBase/Registration/Reg.aspx?ptguid=ddb9e76c-9f60-4e3c-bd26-e4b4d6e1b55f
The agenda for this meeting will be posted soon. To view the agenda once it is posted, or for more information on the Interagency Autism Coordinating Committee, please see the link below:
http://www.nimh.nih.gov/research-funding/scientific-meetings/recurring-meetings/iacc/index.shtml
Please visit my blog at Parents.com...
~Barack Obama
Pack your bags, call your mother-in-law to watch the kids and meet me in DC on March 14th. The Interagency Autism Coordinating Committee is meeting and this time, the meeting is open to the public.
Seriously, I am hoping I can figure out a way to go...
******
A meeting of the Interagency Autism Coordinating Committee [under the Combating Autism Act of 2006 (P.L. 109-416)] will take place on Friday, March 14, 2008 from 9:00 a.m. to 4:00 p.m. at the Ronald Reagan Building and International Trade Center, Rotunda Room, 1300 Pennsylvania Avenue, NW, Washington, DC 20004.
The meeting will be open to the public, with attendance limited to space available. Individuals who plan to attend and need special assistance, such as sign language interpretation or other reasonable accommodations, should indicate these needs when registering for the meeting. The registration website can be found at the link below:
https://www.infinityconferences.com/InfiniBase/Registration/Reg.aspx?ptguid=ddb9e76c-9f60-4e3c-bd26-e4b4d6e1b55f
The agenda for this meeting will be posted soon. To view the agenda once it is posted, or for more information on the Interagency Autism Coordinating Committee, please see the link below:
http://www.nimh.nih.gov/research-funding/scientific-meetings/recurring-meetings/iacc/index.shtml
Please visit my blog at Parents.com...
Wednesday, February 20, 2008
Autism: More Than Words
"Autism is hard because you want to act one way, but you can't always do that. It's sad that sometimes people don't know that sometimes I can't stop myself and they get mad at me. If I could tell people one thing about autism it would be that I don't want to be this way. But I am, so don't be mad. Be understanding."
~Carly Fleischmann
ABC News featured a story yesterday about Carly Fleischmann, a beautiful teenage girl with a story to tell. You can view it here or read the story here.
Yes, Carly has autism. But as you can see from this report, she is so much more than that.
Thank you Carly for creating more understanding. We heard you ... loud and clear.
~Carly Fleischmann
ABC News featured a story yesterday about Carly Fleischmann, a beautiful teenage girl with a story to tell. You can view it here or read the story here.
Yes, Carly has autism. But as you can see from this report, she is so much more than that.
Thank you Carly for creating more understanding. We heard you ... loud and clear.
Tuesday, February 19, 2008
Autism and Boston Marathon Training Week 2: What Was I Thinking?
Regrets, I’ve had a few
But then again, too few to mention…
~Frank/Elvis/Paul Anka et al
Sometimes I just don’t know why I go and write the crazy things I do. Take last Sunday’s blog for instance when I cavalierly declared:
And, of course, I’ll keep you up to date here on the Autismville blog. Every week I plan to post some sort of lame analogy related to autism and running.
Tune in next Sunday for the first of the series:
Autism and Running the Boston Marathon: Never, Ever Swallow the Snot.
Really? Did I have to go and say that?
I mean mention the whole snot thing. That’s just awful.
But I did. And a promise is a promise. I will go forth, type and publish. Please forgive me. I promise the gross-out factor will absolutely not be a trend. (Translation: I just know my mother is going to read this and be thoroughly disappointed in my full disclosure.)
So yesterday was the big twelve-mile run in week two of my training for the Boston Marathon. (One of the few luxuries related to training for Boston is the fact that you can slip it into conversation frequently. It rolls off the tongue and people are automatically impressed. Small talk has never been so easy.) I must admit, so far, so good. These forty-something legs are much stronger than I realized.
When I headed out the sun was shining and the temperatures were sitting comfortably in the thirties. (Combine one part sunshine with one part endorphins -- add a dash of favorite tunes on the iPod, and you’ve got one potent cocktail for stress relief.) Unfortunately, about halfway through my run, the sun decided to disappear and the wind simultaneously decided to kick in.
Ouch.
“That’s okay” I thought to myself. “I need to be used to all sorts of crazy weather. This is good preparation…”
I ran on … my legs still surprisingly strong. But my core got colder, and colder, and colder … Eventually my hands felt numb, my face paralyzed by the chill.
Misery.
(Warning: if you prefer to think of me as sweet, bleach-blonde, prom-queen, lip-gloss wearing Judith, please. Please. I implore you. Stop. Now. Long distance running is a rather graphic experience. The remaining content of this particular blog entry will be as well…)
Not only does cold weather cause facial paralysis and tingling hands, it also causes some serious post-nasal drip. When the cold wind starts howling, my nasal passages start gushing. I do my best to evacuate said drainage via my nose, but the sheer power and magnitude of the mucous sometimes is too much to manage. The overflow heads due south right down my throat.
Ick…
This is not a new experience for me. Almost ten years ago, when I ran (okay, okay … shuffled) my first marathon (the Marine Corp Marathon in D.C.) the weather conditions were similar. Cold, cloudy, windy.
Ick.
I was new to running and still possessed a sense of southern vanity. So whatever snot I was unable to blow out of my nose, I discretely … swallowed.
Ick.
By mile twenty, I had swallowed so much mucous I thought I was going to hurl. I’m here to tell you, Power Gel and mucous are not a pleasant combination. The remainder of the marathon was absolutely miserable. I finished, but was a sickly shade of green when I crossed the finish line.
So I’ve done the only thing I can do. I’ve mastered the art of the spit. At first it seemed so unnatural. But I quickly learned that evacuating via a power spit actually works quite well. No more green feeling. No more ickiness. I spit my way through the Chicago Marathon a couple of years ago and crossed the finish line with a smile upon my face.
Apologies. I warned you.
This of course leads me to the obligatory autism analogy…
I’m not sure about how you felt when your child was first diagnosed with autism. Personally, I felt completely lost. I didn’t know anything about autism. I didn’t know what to do and I didn’t know when I should be doing it. I didn’t know where to turn. I needed guidance.
I resorted to e-mailing anyone I knew who might have some idea about how I could help Jack. If they had a cousin with autism, I e-mailed them. If their mother-in-law was a speech therapist I called them. I reached out, hoping that I could find something … anything to hold on to.
One piece of advice I received over and over was to become a Googler. Books were fine. Seminars were good. But the magic of the internet … that was where the most current info could be found. And current was what I needed for Jack.
So, like Jenny McCarthy, I earned my Google PhD sitting hunched over the computer monitor reading anything I could find until I drug my tightened, frightened shoulders to bed in the wee small hours. And I did find a lot of great information. First Signs helped me identify red flags. Cure Autism Now had the DSM criteria on its now defunct site. I read it over and over and over, trying to no avail to figure out how to make it inapplicable for my little guy. I read about DAN on the Autism Research Institute web site. I researched ABA programs. I watched the entire NBC News autism video series on the Autism Speaks web site. I refined my Google skills by learning about Yahoo! Groups. I felt like I hit the jackpot when I realized I could actually converse with other parents about treatments, services and life parenting a child with autism, all from the comfort of my desk chair. Fellow parents became my greatest resource.
Along the way though, I did encounter a bit of “mucous.” I stumbled across sites and organizations that were constantly in attack mode, trying to find a way to win at the blame game. I read them voyeuristically, hoping maybe somewhere I would find something beneficial. I read and read and read. And then that green feeling resurfaced. It was just too much for me to stomach.
Ick …
Two years later, the bitter patrol is still going strong. (I'm not naming names because I don't want to provide free advertising.) The blogosphere is a powerful vehicle for those traveling endlessly on the rocky road of hostility and hate.
Am I saying that we should never be able to say anything negative or question the motives of others? Never have moments of anger? Absolutely not. But there’s a trend you’ll recognize. For some organizations/individuals/dwellers of the alternate universe known as the internet, that is what they do the majority of the time. They don’t spend time trying to find answers. They spend time attacking. They spend time complaining. They spend very little time doing much of anything.
But one thing I’ve learned: if you swallow too much of that non-productive phlegm, you’ll end up feeling very queasy. And it will be harder to keep putting one foot in front of the other. Harder to be your strongest for the long road ahead.
Be careful out there. Take in as much info as you can. Just don’t be afraid to spit if you need to…
Tune in next week for my second update: Autism and Training for the Boston Marathon: Strength Training. (No gross out factor, I promise!)
But then again, too few to mention…
~Frank/Elvis/Paul Anka et al
Sometimes I just don’t know why I go and write the crazy things I do. Take last Sunday’s blog for instance when I cavalierly declared:
And, of course, I’ll keep you up to date here on the Autismville blog. Every week I plan to post some sort of lame analogy related to autism and running.
Tune in next Sunday for the first of the series:
Autism and Running the Boston Marathon: Never, Ever Swallow the Snot.
Really? Did I have to go and say that?
I mean mention the whole snot thing. That’s just awful.
But I did. And a promise is a promise. I will go forth, type and publish. Please forgive me. I promise the gross-out factor will absolutely not be a trend. (Translation: I just know my mother is going to read this and be thoroughly disappointed in my full disclosure.)
So yesterday was the big twelve-mile run in week two of my training for the Boston Marathon. (One of the few luxuries related to training for Boston is the fact that you can slip it into conversation frequently. It rolls off the tongue and people are automatically impressed. Small talk has never been so easy.) I must admit, so far, so good. These forty-something legs are much stronger than I realized.
When I headed out the sun was shining and the temperatures were sitting comfortably in the thirties. (Combine one part sunshine with one part endorphins -- add a dash of favorite tunes on the iPod, and you’ve got one potent cocktail for stress relief.) Unfortunately, about halfway through my run, the sun decided to disappear and the wind simultaneously decided to kick in.
Ouch.
“That’s okay” I thought to myself. “I need to be used to all sorts of crazy weather. This is good preparation…”
I ran on … my legs still surprisingly strong. But my core got colder, and colder, and colder … Eventually my hands felt numb, my face paralyzed by the chill.
Misery.
(Warning: if you prefer to think of me as sweet, bleach-blonde, prom-queen, lip-gloss wearing Judith, please. Please. I implore you. Stop. Now. Long distance running is a rather graphic experience. The remaining content of this particular blog entry will be as well…)
Not only does cold weather cause facial paralysis and tingling hands, it also causes some serious post-nasal drip. When the cold wind starts howling, my nasal passages start gushing. I do my best to evacuate said drainage via my nose, but the sheer power and magnitude of the mucous sometimes is too much to manage. The overflow heads due south right down my throat.
Ick…
This is not a new experience for me. Almost ten years ago, when I ran (okay, okay … shuffled) my first marathon (the Marine Corp Marathon in D.C.) the weather conditions were similar. Cold, cloudy, windy.
Ick.
I was new to running and still possessed a sense of southern vanity. So whatever snot I was unable to blow out of my nose, I discretely … swallowed.
Ick.
By mile twenty, I had swallowed so much mucous I thought I was going to hurl. I’m here to tell you, Power Gel and mucous are not a pleasant combination. The remainder of the marathon was absolutely miserable. I finished, but was a sickly shade of green when I crossed the finish line.
So I’ve done the only thing I can do. I’ve mastered the art of the spit. At first it seemed so unnatural. But I quickly learned that evacuating via a power spit actually works quite well. No more green feeling. No more ickiness. I spit my way through the Chicago Marathon a couple of years ago and crossed the finish line with a smile upon my face.
Apologies. I warned you.
This of course leads me to the obligatory autism analogy…
I’m not sure about how you felt when your child was first diagnosed with autism. Personally, I felt completely lost. I didn’t know anything about autism. I didn’t know what to do and I didn’t know when I should be doing it. I didn’t know where to turn. I needed guidance.
I resorted to e-mailing anyone I knew who might have some idea about how I could help Jack. If they had a cousin with autism, I e-mailed them. If their mother-in-law was a speech therapist I called them. I reached out, hoping that I could find something … anything to hold on to.
One piece of advice I received over and over was to become a Googler. Books were fine. Seminars were good. But the magic of the internet … that was where the most current info could be found. And current was what I needed for Jack.
So, like Jenny McCarthy, I earned my Google PhD sitting hunched over the computer monitor reading anything I could find until I drug my tightened, frightened shoulders to bed in the wee small hours. And I did find a lot of great information. First Signs helped me identify red flags. Cure Autism Now had the DSM criteria on its now defunct site. I read it over and over and over, trying to no avail to figure out how to make it inapplicable for my little guy. I read about DAN on the Autism Research Institute web site. I researched ABA programs. I watched the entire NBC News autism video series on the Autism Speaks web site. I refined my Google skills by learning about Yahoo! Groups. I felt like I hit the jackpot when I realized I could actually converse with other parents about treatments, services and life parenting a child with autism, all from the comfort of my desk chair. Fellow parents became my greatest resource.
Along the way though, I did encounter a bit of “mucous.” I stumbled across sites and organizations that were constantly in attack mode, trying to find a way to win at the blame game. I read them voyeuristically, hoping maybe somewhere I would find something beneficial. I read and read and read. And then that green feeling resurfaced. It was just too much for me to stomach.
Ick …
Two years later, the bitter patrol is still going strong. (I'm not naming names because I don't want to provide free advertising.) The blogosphere is a powerful vehicle for those traveling endlessly on the rocky road of hostility and hate.
Am I saying that we should never be able to say anything negative or question the motives of others? Never have moments of anger? Absolutely not. But there’s a trend you’ll recognize. For some organizations/individuals/dwellers of the alternate universe known as the internet, that is what they do the majority of the time. They don’t spend time trying to find answers. They spend time attacking. They spend time complaining. They spend very little time doing much of anything.
But one thing I’ve learned: if you swallow too much of that non-productive phlegm, you’ll end up feeling very queasy. And it will be harder to keep putting one foot in front of the other. Harder to be your strongest for the long road ahead.
Be careful out there. Take in as much info as you can. Just don’t be afraid to spit if you need to…
Tune in next week for my second update: Autism and Training for the Boston Marathon: Strength Training. (No gross out factor, I promise!)
Friday, February 15, 2008
Autism: Brotherly Hate
I have decided to stick with love,
Hate is too great a burden to bear.
~Martin Luther King, Jr.
While cruising the web this morning, I ran across the following statement on the Autism Speaks web site regarding the CBS Show "Big Brother."
In episode 2 of “Big Brother 9” which aired on CBS on Feb 13, contestant Adam Jasinski referred to people with autism as “retards” and justified his statement by saying that he worked for an autism organization. Mr. Jasinski works for the United Autism Foundation of Florida , which has no affiliation with Autism Speaks. As an organization committed to increasing awareness of autism spectrum disorders and to diminishing the stigma and misunderstanding that has surrounded autism in the past, Autism Speaks condemns hateful language of this nature. We must continue to move forward to foster greater understanding of autism and other disabilities.
You can provide your own feedback to CBS here.
And just to make things perfectly clear, this little brother is the biggest overachiever you will ever meet...
Hate is too great a burden to bear.
~Martin Luther King, Jr.
While cruising the web this morning, I ran across the following statement on the Autism Speaks web site regarding the CBS Show "Big Brother."
In episode 2 of “Big Brother 9” which aired on CBS on Feb 13, contestant Adam Jasinski referred to people with autism as “retards” and justified his statement by saying that he worked for an autism organization. Mr. Jasinski works for the United Autism Foundation of Florida , which has no affiliation with Autism Speaks. As an organization committed to increasing awareness of autism spectrum disorders and to diminishing the stigma and misunderstanding that has surrounded autism in the past, Autism Speaks condemns hateful language of this nature. We must continue to move forward to foster greater understanding of autism and other disabilities.
You can provide your own feedback to CBS here.
And just to make things perfectly clear, this little brother is the biggest overachiever you will ever meet...
Wednesday, February 13, 2008
Autism: My Funny Valentines
I'm not sure what Valentine's Day looks like at your house, but here's what it looks like in ours:
May your day be filled with two of life's sweetest treats: love and laughter ...
******
Visit Autismville at Parents.com ...
May your day be filled with two of life's sweetest treats: love and laughter ...
******
Visit Autismville at Parents.com ...
Autism: How About Some Good News For A Change
"As a parent, I saw the future and so the question is, given our position, what do we do about it? Maybe we could be an example, maybe we could use our position of leadership to try to change the work environment."
~Randy Lewis, father of 19-year-old son with autism
As parents of kids with special needs, we have a choice. We can be bitter or we can be better.
Please don't misunderstand. Good days and bad days are inevitable. Quite obviously if you read this blog on a regular basis, you'll know that I certainly have my share of both. However, our general outlook on life and belief in the potential of our kids isn't just happenstance. I believe it's a decision.
A choice.
Randy Lewis of Walgreens made a choice to try to provide individuals with disabilities an opportunity to reach their full potential. He saw a door that was tightly shut and through years of persistence and effort, he pried that door wide open.
ABC News shared his inspirational story this week on ABC News with Charles Gibson.
Please. Take a moment to watch.
http://www.abcnews.go.com/WN/story?id=4272981&page=1
High-five to you Mr. Lewis.
~Randy Lewis, father of 19-year-old son with autism
As parents of kids with special needs, we have a choice. We can be bitter or we can be better.
Please don't misunderstand. Good days and bad days are inevitable. Quite obviously if you read this blog on a regular basis, you'll know that I certainly have my share of both. However, our general outlook on life and belief in the potential of our kids isn't just happenstance. I believe it's a decision.
A choice.
Randy Lewis of Walgreens made a choice to try to provide individuals with disabilities an opportunity to reach their full potential. He saw a door that was tightly shut and through years of persistence and effort, he pried that door wide open.
ABC News shared his inspirational story this week on ABC News with Charles Gibson.
Please. Take a moment to watch.
http://www.abcnews.go.com/WN/story?id=4272981&page=1
High-five to you Mr. Lewis.
Monday, February 11, 2008
Totaled
I wondered when it would happen.
Today, a sunny, bitterly cold Boston Monday, it finally did. The split second the violent force connected and sent my head snapping sideways, cracking into the driver’s side window, I knew.
We’d been hit.
I never saw it coming.
And just like they say it always does, life went into slow motion.
The new car smell had barely dissipated from this car, my Christmas present from Andy. We would be doing a lot of driving back and forth to Jack’s school. Four hours a day in the car for me, depending on the traffic. This car would get good gas mileage. It would be comfortable. It would handle the icy roads and snowy conditions.
It would be safe.
I cried out as the car careened out-of control across the lanes of 95 South. True to my southern upbringing “Jesus, help us” was all I could muster. We spun for what seemed an eternity and I waited helplessly for the second impact…the one that very well might finish us off.
It never came.
Jesus took the wheel.
So we stopped.
And then there was silence.
I peered into the back seat, terrified of what I might find.
Sweet Jack, strapped securely in his booster, made eye contact with me and started to cry.
“It’s alright sweet pea. We’re alright” I whispered in relief.
And we are…
Today, a sunny, bitterly cold Boston Monday, it finally did. The split second the violent force connected and sent my head snapping sideways, cracking into the driver’s side window, I knew.
We’d been hit.
I never saw it coming.
And just like they say it always does, life went into slow motion.
The new car smell had barely dissipated from this car, my Christmas present from Andy. We would be doing a lot of driving back and forth to Jack’s school. Four hours a day in the car for me, depending on the traffic. This car would get good gas mileage. It would be comfortable. It would handle the icy roads and snowy conditions.
It would be safe.
I cried out as the car careened out-of control across the lanes of 95 South. True to my southern upbringing “Jesus, help us” was all I could muster. We spun for what seemed an eternity and I waited helplessly for the second impact…the one that very well might finish us off.
It never came.
Jesus took the wheel.
So we stopped.
And then there was silence.
I peered into the back seat, terrified of what I might find.
Sweet Jack, strapped securely in his booster, made eye contact with me and started to cry.
“It’s alright sweet pea. We’re alright” I whispered in relief.
And we are…
Sunday, February 10, 2008
Autism: Oh Yeah ... She's a Goner
I remember when, I remember, I remember when I lost my mind
There was something so pleasant about that place.
~Gnarls Barkley
I stepped out of my front door this morning into the bright New England sunshine, heading out for a ten-miler.
Don’t be overly impressed. I haven’t covered ten miles on a run since 2006.
Nevertheless, I made it without too much pain, although it was pouring a cold steady rain by the time I got back home. I’m not what you would consider a real runner. I pop gummy bears instead of Power Gels. I take walk breaks via the Galloway method. I’ve been completely smoked by women twice my age in various long distance events.
No worries. It’s all good.
Someone has to finish last, right?
Why, you might be asking yourself, is this forty-one year old housewife going out for a ten-mile run? And what does it have to do with autism. Isn’t that what this blog is supposed to be all about?
Well, I did something really stupid I’m afraid. I went and signed up to run the mother of all marathons:
Boston
It’s not that Boston was really in my plans. Boston has always seemed like an impossibility to me. You have to actually qualify to run Boston.
But then the president of Jack’s school mentioned … ahem… that they had some numbers for the race. (Boston allows certain charity runners to participate without qualifying.) Nashoba had just one number left and really, really, really needed someone to run on their behalf.
Dammit. I couldn’t tell this woman, my inspiration, my hero, no.
So I called Andy at work and told him to be extra nice to me the next 11 weeks. And I forged out a haphazard training plan. The goal is to push myself just hard enough without inflicting injury. I’m aiming high. My hope is to finish in under the 6 hour mark when they officially close the course. I may crawl over the finish line, but I’ll be doing it for something I truly believe in.
And, of course, I’ll keep you up to date here on the Autismville blog. Every week I plan to post some sort of lame analogy related to autism and running.
Tune in next Sunday for the first of the series:
Autism and Running the Boston Marathon: Never, Ever Swallow the Snot.
Now please excuse me. I've got some Aleve to pop...
******
Please pop over to my blog at Parents.com...
There was something so pleasant about that place.
~Gnarls Barkley
I stepped out of my front door this morning into the bright New England sunshine, heading out for a ten-miler.
Don’t be overly impressed. I haven’t covered ten miles on a run since 2006.
Nevertheless, I made it without too much pain, although it was pouring a cold steady rain by the time I got back home. I’m not what you would consider a real runner. I pop gummy bears instead of Power Gels. I take walk breaks via the Galloway method. I’ve been completely smoked by women twice my age in various long distance events.
No worries. It’s all good.
Someone has to finish last, right?
Why, you might be asking yourself, is this forty-one year old housewife going out for a ten-mile run? And what does it have to do with autism. Isn’t that what this blog is supposed to be all about?
Well, I did something really stupid I’m afraid. I went and signed up to run the mother of all marathons:
Boston
It’s not that Boston was really in my plans. Boston has always seemed like an impossibility to me. You have to actually qualify to run Boston.
But then the president of Jack’s school mentioned … ahem… that they had some numbers for the race. (Boston allows certain charity runners to participate without qualifying.) Nashoba had just one number left and really, really, really needed someone to run on their behalf.
Dammit. I couldn’t tell this woman, my inspiration, my hero, no.
So I called Andy at work and told him to be extra nice to me the next 11 weeks. And I forged out a haphazard training plan. The goal is to push myself just hard enough without inflicting injury. I’m aiming high. My hope is to finish in under the 6 hour mark when they officially close the course. I may crawl over the finish line, but I’ll be doing it for something I truly believe in.
And, of course, I’ll keep you up to date here on the Autismville blog. Every week I plan to post some sort of lame analogy related to autism and running.
Tune in next Sunday for the first of the series:
Autism and Running the Boston Marathon: Never, Ever Swallow the Snot.
Now please excuse me. I've got some Aleve to pop...
******
Please pop over to my blog at Parents.com...
Autism: Larry King, My Date For Valentine's Day
Saw the following on the Larry King Live web site:
The heartbreak ...and hope of autism. Jason "J-Mac" McElwain inspired the world with his incredible shot-making at a high school basketball game. Larry talks to the teen and others about the disorder. Holly Robinson Peete, Doug Flutie and Toni Braxton join the discussion to bust myths and present breakthroughs. It's an uplifting hour with those who know!
There's a link on the site for those who would like to e-mail questions for the show. Further down on the page there is a beautiful commentary written by famous autism mama Jenny McCarthy.
Guess I'll be spending my Valentine's Day with Larry and crew. Aahhh the romantic life of the autism mom.
By the way, THANK YOU LARRY KING, for the extensive coverage you've given to autism this past year. A great big Valentine's smooch to you!
******
Please visit my blog at Parents.com!
The heartbreak ...and hope of autism. Jason "J-Mac" McElwain inspired the world with his incredible shot-making at a high school basketball game. Larry talks to the teen and others about the disorder. Holly Robinson Peete, Doug Flutie and Toni Braxton join the discussion to bust myths and present breakthroughs. It's an uplifting hour with those who know!
There's a link on the site for those who would like to e-mail questions for the show. Further down on the page there is a beautiful commentary written by famous autism mama Jenny McCarthy.
Guess I'll be spending my Valentine's Day with Larry and crew. Aahhh the romantic life of the autism mom.
By the way, THANK YOU LARRY KING, for the extensive coverage you've given to autism this past year. A great big Valentine's smooch to you!
******
Please visit my blog at Parents.com!
Friday, February 8, 2008
Helping Those With Autism Today
“We can throw stones, complain about them, stumble on them, climb over them, or build with them”
~William Arthur Ward
If you've been reading this blog for long, then you already know that one of the autism-related issues that I am most passionate about is the incredible lack of services and support for families dealing with the diagnosis. In fact it is so bad that if I hadn't experienced it personally or witnessed other families struggling desperately, I probably wouldn't believe it.
Insurance companies see the word autism and routinely respond with the knee-jerk "Denied." Children are unable to access the intervention they need. The Department of Education allows various states and school districts to blatantly disregard the federal mandate for a free and appropriate education under The Individuals with Disabilities Education Act. Adults age out of the system at 22 and then have little or no support.
It's a mess.
Somebody somewhere has got to do something.
The fantastic news is that Autism Speaks announced today that it is once again accepting applications for grants that "promote services that will enhance the lives of those affected by autism spectrum disorders."
I encourage anyone and everyone who reads this blog to make sure that providers and educators in your area are aware of this opportunity. For details please see below or simply visit the Autism Speaks web site.
******
Request for Applications: Family Services Community Grants
February 7, 2008 - Autism Speaks invites grant applications that promote services that will enhance the lives of those affected by autism spectrum disorders. Recognizing that there are multiple needs in this expansive and varied community, the focus of these grants will be on proposals that serve to build the field of services for individuals with autism and expand the capacity to effectively serve this growing community. Autism Speaks will accept family services community grant proposals that address one of the following areas of need :
Education
Building the field and scope of educators and trainers, by providing continuing education and training to those working with individuals with autism spectrum disorders
Providing funding for consultation to improveeducation for individuals with autism
Providing funding to increase the capacity of service providers
Sponsoring conferences
Training professionals to interact more effectively with individuals with autism spectrum disorders
Recreation/Community Activities
Funding to organizations that provide respite services.
Social skills training that provides peer modeling and inclusion with typically developing peers
Recreation and athletic programs for individuals with autism spectrum disorders
Equipment/Supportive Technology
Computer programs for schools, centers or agencies
OT and PT equipment
Augmentative communication devices (for schools or agencies, not individuals)
Young Adult/Adults Services
Pre-vocational and vocational training
Transition planning
Residential services
Recreation programs for adults
Life/community integration skills
Autism Speaks Family Services Community Grants will partner with other organizations to provide additional funding for projects that match our objectives.
Autism Speaks will not award grants to individuals or fund an individual or family for participation in personal programs. We encourage individuals to contact local providers and organizations to submit proposals that will meet our stated goals.
Autism Speaks Family Service Community Grants do not fund scientific research projects. For information about science grants funded by Autism Speaks please click on the following link: http://www.autismspeaks.org/science/research/grants/index.php
Awards
The average grant award will be in the $10,000 - $20,000 range. Multi-year grants will not be awarded.
Application Process
Organizations interested in submitting an application must address one of the 4 areas of need. Successful applicants will apply grant funding to support new programs or the expansion of existing projects.
All applications must be submitted on line. Click here for the online application process.
View the Family Services Community Grants RFA (PDF).
On December 20, 2007, Autism Speaks announced more than $565,000 in Family Services Community Grants. Read a press release here and read summaries of the funded grants here.
~William Arthur Ward
If you've been reading this blog for long, then you already know that one of the autism-related issues that I am most passionate about is the incredible lack of services and support for families dealing with the diagnosis. In fact it is so bad that if I hadn't experienced it personally or witnessed other families struggling desperately, I probably wouldn't believe it.
Insurance companies see the word autism and routinely respond with the knee-jerk "Denied." Children are unable to access the intervention they need. The Department of Education allows various states and school districts to blatantly disregard the federal mandate for a free and appropriate education under The Individuals with Disabilities Education Act. Adults age out of the system at 22 and then have little or no support.
It's a mess.
Somebody somewhere has got to do something.
The fantastic news is that Autism Speaks announced today that it is once again accepting applications for grants that "promote services that will enhance the lives of those affected by autism spectrum disorders."
I encourage anyone and everyone who reads this blog to make sure that providers and educators in your area are aware of this opportunity. For details please see below or simply visit the Autism Speaks web site.
******
Request for Applications: Family Services Community Grants
February 7, 2008 - Autism Speaks invites grant applications that promote services that will enhance the lives of those affected by autism spectrum disorders. Recognizing that there are multiple needs in this expansive and varied community, the focus of these grants will be on proposals that serve to build the field of services for individuals with autism and expand the capacity to effectively serve this growing community. Autism Speaks will accept family services community grant proposals that address one of the following areas of need :
Education
Building the field and scope of educators and trainers, by providing continuing education and training to those working with individuals with autism spectrum disorders
Providing funding for consultation to improveeducation for individuals with autism
Providing funding to increase the capacity of service providers
Sponsoring conferences
Training professionals to interact more effectively with individuals with autism spectrum disorders
Recreation/Community Activities
Funding to organizations that provide respite services.
Social skills training that provides peer modeling and inclusion with typically developing peers
Recreation and athletic programs for individuals with autism spectrum disorders
Equipment/Supportive Technology
Computer programs for schools, centers or agencies
OT and PT equipment
Augmentative communication devices (for schools or agencies, not individuals)
Young Adult/Adults Services
Pre-vocational and vocational training
Transition planning
Residential services
Recreation programs for adults
Life/community integration skills
Autism Speaks Family Services Community Grants will partner with other organizations to provide additional funding for projects that match our objectives.
Autism Speaks will not award grants to individuals or fund an individual or family for participation in personal programs. We encourage individuals to contact local providers and organizations to submit proposals that will meet our stated goals.
Autism Speaks Family Service Community Grants do not fund scientific research projects. For information about science grants funded by Autism Speaks please click on the following link: http://www.autismspeaks.org/science/research/grants/index.php
Awards
The average grant award will be in the $10,000 - $20,000 range. Multi-year grants will not be awarded.
Application Process
Organizations interested in submitting an application must address one of the 4 areas of need. Successful applicants will apply grant funding to support new programs or the expansion of existing projects.
All applications must be submitted on line. Click here for the online application process.
View the Family Services Community Grants RFA (PDF).
On December 20, 2007, Autism Speaks announced more than $565,000 in Family Services Community Grants. Read a press release here and read summaries of the funded grants here.
Tuesday, February 5, 2008
With Apologies to the Nordy's Shoe Lady
And I laugh at myself
While the tears roll down.
'Cause it's the world I know.
~ Collective Soul
So Amy and I decided to celebrate Super Bowl Sunday by participating in another time-honored, All-American past-time: shoe shopping. Amy’s tennis shoes had definitely seen better days and we needed some mommy/daughter time, so off to Nordy’s we went.
As I’ve gotten older, my tolerance for shopping has waned. I much prefer to point, click and just be done with it already. I’ve got things like laundry, e-mails and insurance claims to worry about. But when it comes to items like shoes for the children, I feel that there should be at least some sort of occasional attempt at proper foot measurement. Unfortunately that requires driving, parking, browsing, buying … the whole excruciatingly long process.
I must confess that as we browsed the prominently displayed collections of pink and patent, I felt a warm sense of motherly pride well up, observing Amy’s shoe prowess.
“It’s innate” I smiled to myself. “Genetic.”
She quickly and efficiently settled on three possibilities: a Puma, a Geox (my favorite) and some crazy Chuck Taylor’s.
About that time the Nordy’s shoe lady sauntered over to offer her assistance. She measured Amy’s foot (size 3 ½) and “headed to the back,” returning quickly with a teetering stack of shoe boxes. I admired her super-cute haircut and her red-patent wedges as we chit-chatted. It turned out that she had just moved back to the Boston area from, of all places, my beloved Texas. (We just moved here from Dallas. She just moved here from Houston. I should have picked up on that … what with the cute red shoes and the fabulous haircut…)
Somehow, as it always does with me, the subject of Jack’s autism came up. Immediately her eyes flickered with recognition.
“Oh yeah...” she said. “Isn’t Doug Flutie from around here?”
I opened my mouth to answer; the mouth I had actually applied Bobbi Brown lip gloss to just moments earlier in an attempt to appear minutely with-it while shopping; the mouth that had been happily chit-chatting mere seconds before. Much to my surprise, nothing came out.
Throat tightly closed.
Nothing.
Oh geez...
I stammered. Shoe lady awkwardly stared. Amy, fully accustomed to the freak-show her mother can be, focused on walking around, modeling shoes.
I attempted to regain my composure as shoe lady ran to get a Kleenex.
“I’m ssssoooorrry…” I blubbered. “You see, the Flutie Foundation has been an incredibly generous supporter of Jack’s school. They are very much part of the reason the school has been able to expand. Because of that, our sweet Jack has a spot there. We are so, so, so … ggggrrrrrateful” I sputtered.
By this time, other shoe employees were closing in, trying to not be obvious with their rubbernecking. I sniffled, embarrassed by my loss of dignity.
I cleared my throat and declared, “I’ve never met Doug Flutie, but I love him.”
I managed to pull it together and sheepishly handed over my credit card. Of course, in my moment of breakdown I bought not one, but two pair of tennis shoes for Amy. (What can I say. The girl’s brilliant. She knows that if mom’s distracted it’s easier to talk her into unreasonable purchases.)
Nordy shoe lady smiled, handed me my bag and wished us well. I’m sure she thought I was an absolute nutcase.
And she would be right.
I am…
In this world of IEP’s and diagnosis, of bullies and blogosphere bickering, of long commutes and sleepless nights, I’m just plain thankful.
Thankful for the Doug Fluties of the world, who don’t have to, but take time to make things easier … better for kids like Jack.
I’ve encountered generous people like this throughout the journey. It reminds me of the feeling I had right after September 11, when we as a country realized we needed to look out for each other … and we did in ways too amazing and inspirational for me to capture on paper.
Anne Frank was right. Despite everything, I believe that people are really good at heart.
So thank you Doug Flutie.
And thank you cashier at Roche Brothers who says “Hi Jack” every weekend as we check out. She remembers his name. So sweet.
And thank you Liz Martineau, mother of 5, Harvard MBA, who chucked it all to start a school for kids like Jack. Your vision is our reality.
And thank you fellow moms, friends, family and blog readers for listening to me drone on and on about anything and everything autism.
And thank you teachers and therapists who are overworked and underpaid. Who endure the budget constraints and parental complaints along with the hair-pulling and face-scratching, all with a smile.
And thank you members of various autism organizations who never fail to respond to my never-ending queries about the politics and direction of autism research and services. What can I say. I'm a world-class worrier.
And thank you to my sweet neighbor who I saw the other day while I was out running. She told me she reads my crazy blog every day, even though she is not personally affected. I was so incredibly touched by that.
Mount Judith occasionally just has to crumble with gratitude. Gratitude for the opportunity to experience the beauty of human kindness.
Hopefully next time I can crumble somewhere other than Nordy’s shoe department. My pride and my credit card would be grateful for that.
******
Please visit my blog at Parents.com.
While the tears roll down.
'Cause it's the world I know.
~ Collective Soul
So Amy and I decided to celebrate Super Bowl Sunday by participating in another time-honored, All-American past-time: shoe shopping. Amy’s tennis shoes had definitely seen better days and we needed some mommy/daughter time, so off to Nordy’s we went.
As I’ve gotten older, my tolerance for shopping has waned. I much prefer to point, click and just be done with it already. I’ve got things like laundry, e-mails and insurance claims to worry about. But when it comes to items like shoes for the children, I feel that there should be at least some sort of occasional attempt at proper foot measurement. Unfortunately that requires driving, parking, browsing, buying … the whole excruciatingly long process.
I must confess that as we browsed the prominently displayed collections of pink and patent, I felt a warm sense of motherly pride well up, observing Amy’s shoe prowess.
“It’s innate” I smiled to myself. “Genetic.”
She quickly and efficiently settled on three possibilities: a Puma, a Geox (my favorite) and some crazy Chuck Taylor’s.
About that time the Nordy’s shoe lady sauntered over to offer her assistance. She measured Amy’s foot (size 3 ½) and “headed to the back,” returning quickly with a teetering stack of shoe boxes. I admired her super-cute haircut and her red-patent wedges as we chit-chatted. It turned out that she had just moved back to the Boston area from, of all places, my beloved Texas. (We just moved here from Dallas. She just moved here from Houston. I should have picked up on that … what with the cute red shoes and the fabulous haircut…)
Somehow, as it always does with me, the subject of Jack’s autism came up. Immediately her eyes flickered with recognition.
“Oh yeah...” she said. “Isn’t Doug Flutie from around here?”
I opened my mouth to answer; the mouth I had actually applied Bobbi Brown lip gloss to just moments earlier in an attempt to appear minutely with-it while shopping; the mouth that had been happily chit-chatting mere seconds before. Much to my surprise, nothing came out.
Throat tightly closed.
Nothing.
Oh geez...
I stammered. Shoe lady awkwardly stared. Amy, fully accustomed to the freak-show her mother can be, focused on walking around, modeling shoes.
I attempted to regain my composure as shoe lady ran to get a Kleenex.
“I’m ssssoooorrry…” I blubbered. “You see, the Flutie Foundation has been an incredibly generous supporter of Jack’s school. They are very much part of the reason the school has been able to expand. Because of that, our sweet Jack has a spot there. We are so, so, so … ggggrrrrrateful” I sputtered.
By this time, other shoe employees were closing in, trying to not be obvious with their rubbernecking. I sniffled, embarrassed by my loss of dignity.
I cleared my throat and declared, “I’ve never met Doug Flutie, but I love him.”
I managed to pull it together and sheepishly handed over my credit card. Of course, in my moment of breakdown I bought not one, but two pair of tennis shoes for Amy. (What can I say. The girl’s brilliant. She knows that if mom’s distracted it’s easier to talk her into unreasonable purchases.)
Nordy shoe lady smiled, handed me my bag and wished us well. I’m sure she thought I was an absolute nutcase.
And she would be right.
I am…
In this world of IEP’s and diagnosis, of bullies and blogosphere bickering, of long commutes and sleepless nights, I’m just plain thankful.
Thankful for the Doug Fluties of the world, who don’t have to, but take time to make things easier … better for kids like Jack.
I’ve encountered generous people like this throughout the journey. It reminds me of the feeling I had right after September 11, when we as a country realized we needed to look out for each other … and we did in ways too amazing and inspirational for me to capture on paper.
Anne Frank was right. Despite everything, I believe that people are really good at heart.
So thank you Doug Flutie.
And thank you cashier at Roche Brothers who says “Hi Jack” every weekend as we check out. She remembers his name. So sweet.
And thank you Liz Martineau, mother of 5, Harvard MBA, who chucked it all to start a school for kids like Jack. Your vision is our reality.
And thank you fellow moms, friends, family and blog readers for listening to me drone on and on about anything and everything autism.
And thank you teachers and therapists who are overworked and underpaid. Who endure the budget constraints and parental complaints along with the hair-pulling and face-scratching, all with a smile.
And thank you members of various autism organizations who never fail to respond to my never-ending queries about the politics and direction of autism research and services. What can I say. I'm a world-class worrier.
And thank you to my sweet neighbor who I saw the other day while I was out running. She told me she reads my crazy blog every day, even though she is not personally affected. I was so incredibly touched by that.
Mount Judith occasionally just has to crumble with gratitude. Gratitude for the opportunity to experience the beauty of human kindness.
Hopefully next time I can crumble somewhere other than Nordy’s shoe department. My pride and my credit card would be grateful for that.
******
Please visit my blog at Parents.com.
Saturday, February 2, 2008
We Interrupt Our Regularly Scheduled Drivel...
"I must do something" always solves more problems than "Something must be done."
~Anonymous
I received the following information in my overflowing inbox this week and thought it was important to get the word out.
So, without further ado …
We interrupt this blog to provide the following public service announcements.
First, a note from Harold S. Koplewicz, M.D., Director, NYU Child Study Center:
Hello:
When we launched our “Ransom Notes” public awareness campaign this December, our intent was to spark a dialogue about America’s last silent public health crisis – the millions of children who suffer from untreated psychiatric and learning disorders. The campaign truly caught the public’s attention. We received thousands of calls and letters from parents, mental health professionals, educators, advocates, and concerned third parties, all of whom are passionate about helping children. Many people enthusiastically praised the campaign, others were deeply troubled, and some saw both perspectives.
We were so encouraged by the thoughtful response of our active community of caring parents and advocates for children that we plan to take advantage of this momentum with an online forum - not just about the campaign, but about what we can do together to improve awareness and care for children’s mental health. We need your help to do this. We invite all to participate and share their thoughts, insights and opinions at http://www.aboutourkids.org/ on Tuesday, February 26 from 11:00 am to 1:00 pm, EST.
At the Child Study Center, in addition to our research, clinical care, and professional education efforts, we work to bring issues surrounding child and adolescent mental health to the top of America's agenda. We invite you to partner with us to give children and their families equal access to health insurance, remove the stigma that the term "psychiatric disorder" so clearly still elicits, and, most importantly, support the drive to make research and science-based treatment a national priority.
We hope you join us on February 26th and add your voice.
Sincerely,
Harold S. Koplewicz, M.D.http://www.aboutourkids.org/
Second, a request for help from some hardworking researchers out of Columbia University:
Request for Information: Names of Autism Advocacy Organizations in the State of California
We are a group of social scientists at Columbia University studying autism. Our research, under the supervision of Peter Bearman, is funded by the 2007 National Institute of Health Pioneer Award.
Project Background
There has been a staggering increase in the incidence of autism and autism spectrum disorders (ASDs) in California in the past decade---with comparable increases nationally. Three competing theories have been advanced to account for the rise in autism cases: expanded criteria for diagnosing autism, increased environmental degradation/toxicity, and increased genetic risk.
Our research is aimed at disentangling the various purported drivers of the autism epidemic. We believe that a comprehensive understanding cannot be arrived at without examining the social, environmental, and genetic factors that may be driving the autism and ASDs epidemic.
Information Requested
Since 1965 advocacy and nonprofit organizations have played a critical role in propelling autism into the public eye through working with local communities, lobbying on national legislative levels, and pushing for funding of autism research.
We would like to compile a list of autism advocacy and nonprofit organizations in the state of California into a comprehensive directory. We are interested in organizations of all sizes, types and locations. We hope to make this directory a publicly available all-inclusive resource serving the autism community, in addition tohelping us answer some of our research questions related to understanding the social determinants of the autism epidemic.
Responses
If you work for or participate in an organization or group in California we would very much appreciate it if you could send us the name of the group and any contact information you may have.
To write us, please send an email to autism-iserp@columbia.edu or mail your information to:
Institute for Social and Economic Research and Policy (ISERP)814 SIPA BuildingColumbia UniversityNew York, New York 10027
For further information on the project please visit our website at http://www.iserp.columbia.edu/centers/autism.html.
Thank you in advance for your time and assistance in accomplishing this project.
I encourage all of my readers to be part of the solution in whatever capacity possible.
~Anonymous
I received the following information in my overflowing inbox this week and thought it was important to get the word out.
So, without further ado …
We interrupt this blog to provide the following public service announcements.
First, a note from Harold S. Koplewicz, M.D., Director, NYU Child Study Center:
Hello:
When we launched our “Ransom Notes” public awareness campaign this December, our intent was to spark a dialogue about America’s last silent public health crisis – the millions of children who suffer from untreated psychiatric and learning disorders. The campaign truly caught the public’s attention. We received thousands of calls and letters from parents, mental health professionals, educators, advocates, and concerned third parties, all of whom are passionate about helping children. Many people enthusiastically praised the campaign, others were deeply troubled, and some saw both perspectives.
We were so encouraged by the thoughtful response of our active community of caring parents and advocates for children that we plan to take advantage of this momentum with an online forum - not just about the campaign, but about what we can do together to improve awareness and care for children’s mental health. We need your help to do this. We invite all to participate and share their thoughts, insights and opinions at http://www.aboutourkids.org/ on Tuesday, February 26 from 11:00 am to 1:00 pm, EST.
At the Child Study Center, in addition to our research, clinical care, and professional education efforts, we work to bring issues surrounding child and adolescent mental health to the top of America's agenda. We invite you to partner with us to give children and their families equal access to health insurance, remove the stigma that the term "psychiatric disorder" so clearly still elicits, and, most importantly, support the drive to make research and science-based treatment a national priority.
We hope you join us on February 26th and add your voice.
Sincerely,
Harold S. Koplewicz, M.D.http://www.aboutourkids.org/
Second, a request for help from some hardworking researchers out of Columbia University:
Request for Information: Names of Autism Advocacy Organizations in the State of California
We are a group of social scientists at Columbia University studying autism. Our research, under the supervision of Peter Bearman, is funded by the 2007 National Institute of Health Pioneer Award.
Project Background
There has been a staggering increase in the incidence of autism and autism spectrum disorders (ASDs) in California in the past decade---with comparable increases nationally. Three competing theories have been advanced to account for the rise in autism cases: expanded criteria for diagnosing autism, increased environmental degradation/toxicity, and increased genetic risk.
Our research is aimed at disentangling the various purported drivers of the autism epidemic. We believe that a comprehensive understanding cannot be arrived at without examining the social, environmental, and genetic factors that may be driving the autism and ASDs epidemic.
Information Requested
Since 1965 advocacy and nonprofit organizations have played a critical role in propelling autism into the public eye through working with local communities, lobbying on national legislative levels, and pushing for funding of autism research.
We would like to compile a list of autism advocacy and nonprofit organizations in the state of California into a comprehensive directory. We are interested in organizations of all sizes, types and locations. We hope to make this directory a publicly available all-inclusive resource serving the autism community, in addition tohelping us answer some of our research questions related to understanding the social determinants of the autism epidemic.
Responses
If you work for or participate in an organization or group in California we would very much appreciate it if you could send us the name of the group and any contact information you may have.
To write us, please send an email to autism-iserp@columbia.edu or mail your information to:
Institute for Social and Economic Research and Policy (ISERP)814 SIPA BuildingColumbia UniversityNew York, New York 10027
For further information on the project please visit our website at http://www.iserp.columbia.edu/centers/autism.html.
Thank you in advance for your time and assistance in accomplishing this project.
I encourage all of my readers to be part of the solution in whatever capacity possible.
Friday, February 1, 2008
Eli TV
ABC aired the premier episode of "Eli Stone" last night as promised. So far this morning my inbox feedback from fellow autism moms is fairly positive. Guess I should have watched it myself. I crawled into bed around 9:30, planning to read until 10:00 when the show aired here on the east coast. Unfortunately, I lost consciousness long before the first scene hit the airwaves.
So did you watch? If so, what did you think? Did the show help generate awareness about what autism really is? Would a viewer walk away from the show knowing what red flags to look for if they are concerned about a child? Were any treatments discussed? How did they depict the child with autism? Will viewers be hesitant to vaccinate their children after watching?
Of course I can’t help but add that the only Eli my family will be sure to watch this week is the one and only Eli Manning. (It’s the cutest thing. Jack actually loves to sit on the couch with his dad and watch football. In fact, it’s the only television he will watch.) No doubt Eli and his Giants will be going down in flames on Sunday to the beautiful Tom Brady and crew.
With apologies to my long beloved Dallas Cowboys, Go Pats!
******
Update February 2, 2008
To read what the New York Times had to say about Eli Stone this morning, click here.
Make sure to visit my blog on Parents.com.
So did you watch? If so, what did you think? Did the show help generate awareness about what autism really is? Would a viewer walk away from the show knowing what red flags to look for if they are concerned about a child? Were any treatments discussed? How did they depict the child with autism? Will viewers be hesitant to vaccinate their children after watching?
Of course I can’t help but add that the only Eli my family will be sure to watch this week is the one and only Eli Manning. (It’s the cutest thing. Jack actually loves to sit on the couch with his dad and watch football. In fact, it’s the only television he will watch.) No doubt Eli and his Giants will be going down in flames on Sunday to the beautiful Tom Brady and crew.
With apologies to my long beloved Dallas Cowboys, Go Pats!
******
Update February 2, 2008
To read what the New York Times had to say about Eli Stone this morning, click here.
Make sure to visit my blog on Parents.com.
Subscribe to:
Posts (Atom)
Posts
