It's no secret that I'm a fan of Autism Speaks Family Services' efforts. The first thing you'll find when you visit my blog is a link to their 100 Day Kit, which is an amazing resource for families who have just received that mind-boggling autism diagnosis. They also award community grants to service providers that serve to build the field of services for individuals with autism and expand the capacity to effectively support our community. And then of course they have their School Toolkits and the new Autism in the Workplace initiative as well as the Advancing Futures for Adults with Autism ..... The list of resources goes on and on. If you haven't checked it out recently, seriously, you should.
But their newest initiative is one that is especially near and dear to my heart. So many of our kids with autism have such a tough time going to get their hair cut. Parents and hairstylists bear the battlescars of nightmarish visits to the local salon, which explains why so many of our kids walk around with shaggy (although I think endearingly cute) heads. Personally speaking, I put off haircuts until I can no longer see Jack's beautiful baby blues (or my in-laws are scheduled to visit) and then grit my teeth and take him. It is not, shall we say, a pleasant experience.
The good folks at Autism Speaks (many of them parents of kids with autism themselves) have teamed up with Melmark New England and Snip-its (a haircuttery chain for kids that I'm sure many of you are familiar with) to produce a how-to video and haircutting training guide for our families. The guide even contains a social story that you can share with your child before going to the salon.
You tube
(Pssstt... Take a peek at the video. You might just notice a familiar little boy on your screen.)
For additional information about how to make the haircutting experience a more positive one for children with autism, visit Autism Speaks.
Here's to more good hair days and more peace of mind for all of us. Now go forth and snip!
Saturday, May 30, 2009
Sunday, April 26, 2009
Autism: Yes We CAN
I was driving in the rain, both kids napping in the back seat, heads tilted, mouths curled in parallel fashion. I smiled to myself.
Such beautiful babies.
The cell rang and "the babies" both simultaneously startled. (Okay, the babies are 8 and 5, but I’ll always think of them as my babies…Just keeping it real....) I glanced in the rear view and smiled back at them, lifting my hand in a goofy wave.
The arch of my hand, the trajectory of the back and forth motion … it was somehow familiar.
A warm feeling swept over me.
It was my dad’s wave. The arch of the hand was his. I could see him in his button-fly 501’s and his flip flops, waving that stupid wave. My eyes welled and I gazed upward. It felt good to catch a glimpse of him. He’s been gone so very long.
Forty.
That’s how old he was when I stood in the cemetery in San Jose. He had turned forty just the week before. He’d been diagnosed with brain cancer eleven years earlier. The doctors at Stanford had worked hard to keep him with us over the last decade. Hospice had finally stepped in.
And now, I focused as hard as I could at the wood grain of his casket.
It was oak.
And he was in there. My handsome, eccentric, engineer dad in his best suit. Looking so perfect. He had just been playing jazz chords on his treasured baby grand the week before. And now this sturdy oak casket was about to be lowered into the California ground.
I swallowed hard, trying to conquer the lump in my throat.
I looked up at the blue sky and breathed in. His mail was still in the mailbox. His car parked in the garage. But somehow I was supposed to convince myself that he wasn’t coming home.
Almost twenty years later, I named my son Jack. After my dad, of course. His legacy. And of course that Jack, much like his grandfather, has led me down the path of love and joy and unanticipated fear and worry.
I’ve memorized moments with him too.
I vividly remember staring at his bassinet stationed by my hospital bed, wondering what this little boy would teach me. The pediatrician walking into my hospital room the following day, closing the door behind him and clearing his throat.
"Ms. Ursitti, we need to talk..."
His mouth spoke words I couldn't quite digest. Cardiologist.. Testing. Possible transfer.
And so I remember spending that first week shuffling up and down hospital corridors, c-section staples aching, going to the special care nursery to nurse him. Sitting in bed with him when he was just three weeks old, watching him smile at his sister. The unanticipated moment a couple of years later the neurologist scrawled the word “autism” in Sharpie across his medical record.
The best memories, of course, are the joyful ones. The moment he said “mom.” The moment he spontaneously stuck a chicken nugget in his mouth and actually ate it. The first juicy kiss he planted on my cheek just a couple of months back. The laughter. And there's been so much.
Still, it’s been a tough road for him. Like his grandfather, he’s spent a lot of time in rectangular examining rooms with fluorescent lighting. We’ve done the MRI’s, read the lab results, hoped and prayed. The white coats, for the most part, have been kind to us. But they can’t even begin to tell us the biology of his autism. They do the best they can, based on the information they have.
And I wish for more.
I wonder how long it will take for us to learn the biology. Science seems to move at the slowest of paces, lumbering along without any sense of urgency.
Just this past week I read an article in the New York Times that reported the death rate for cancer, adjusted for the size and age of the population, dropped only 5 percent from 1950 to 2005. And that is after Richard Nixon waged “war on cancer” and billions of dollars have been invested in cancer research.
Two decades since that beautiful day in San Jose when I stared at that damned casket. Little progress.
Is it hopeless? Is the complex group of diseases we call cancer something we will never figure out? And is the complex neurological disorder called autism that somehow mildly affects some, while devastating the well-being of others, something we will never be able to quantify somehow?
Call me crazy, but I say not by a long shot. Human beings prevail and progress. It’s part of our makeup. We must find the answers. We have to know.
So hope remains eternal. And this week, a much-needed glimmer came my way.
When I first heard about the Cures Acceleration Network, I thought about the oak grain and the smell of that Sharpie. I thought about the worry that clouds the future, no matter how hard I try to pretend it will all be okay.
I feel validated to know that I’m not the only one who worries about the speed of science.
And the needs of those who suffer.
Who deserve to live.
And play jazz chords
And to know their grandchildren.
Who deserve to speak.
And eat chicken nuggets.
And laugh.
And to know their grandparents.
Who deserve a life with fewer white coats and fluorescent lights... and more blue skies.
Who need some help, not later but now.
Call me a dreamer... It’s the ultimate compliment.
If you're a dreamer too, please visit http://www.specterforthecure.com/.
Such beautiful babies.
The cell rang and "the babies" both simultaneously startled. (Okay, the babies are 8 and 5, but I’ll always think of them as my babies…Just keeping it real....) I glanced in the rear view and smiled back at them, lifting my hand in a goofy wave.
The arch of my hand, the trajectory of the back and forth motion … it was somehow familiar.
A warm feeling swept over me.
It was my dad’s wave. The arch of the hand was his. I could see him in his button-fly 501’s and his flip flops, waving that stupid wave. My eyes welled and I gazed upward. It felt good to catch a glimpse of him. He’s been gone so very long.
Forty.
That’s how old he was when I stood in the cemetery in San Jose. He had turned forty just the week before. He’d been diagnosed with brain cancer eleven years earlier. The doctors at Stanford had worked hard to keep him with us over the last decade. Hospice had finally stepped in.
And now, I focused as hard as I could at the wood grain of his casket.
It was oak.
And he was in there. My handsome, eccentric, engineer dad in his best suit. Looking so perfect. He had just been playing jazz chords on his treasured baby grand the week before. And now this sturdy oak casket was about to be lowered into the California ground.
I swallowed hard, trying to conquer the lump in my throat.
I looked up at the blue sky and breathed in. His mail was still in the mailbox. His car parked in the garage. But somehow I was supposed to convince myself that he wasn’t coming home.
Almost twenty years later, I named my son Jack. After my dad, of course. His legacy. And of course that Jack, much like his grandfather, has led me down the path of love and joy and unanticipated fear and worry.
I’ve memorized moments with him too.
I vividly remember staring at his bassinet stationed by my hospital bed, wondering what this little boy would teach me. The pediatrician walking into my hospital room the following day, closing the door behind him and clearing his throat.
"Ms. Ursitti, we need to talk..."
His mouth spoke words I couldn't quite digest. Cardiologist.. Testing. Possible transfer.
And so I remember spending that first week shuffling up and down hospital corridors, c-section staples aching, going to the special care nursery to nurse him. Sitting in bed with him when he was just three weeks old, watching him smile at his sister. The unanticipated moment a couple of years later the neurologist scrawled the word “autism” in Sharpie across his medical record.
The best memories, of course, are the joyful ones. The moment he said “mom.” The moment he spontaneously stuck a chicken nugget in his mouth and actually ate it. The first juicy kiss he planted on my cheek just a couple of months back. The laughter. And there's been so much.
Still, it’s been a tough road for him. Like his grandfather, he’s spent a lot of time in rectangular examining rooms with fluorescent lighting. We’ve done the MRI’s, read the lab results, hoped and prayed. The white coats, for the most part, have been kind to us. But they can’t even begin to tell us the biology of his autism. They do the best they can, based on the information they have.
And I wish for more.
I wonder how long it will take for us to learn the biology. Science seems to move at the slowest of paces, lumbering along without any sense of urgency.
Just this past week I read an article in the New York Times that reported the death rate for cancer, adjusted for the size and age of the population, dropped only 5 percent from 1950 to 2005. And that is after Richard Nixon waged “war on cancer” and billions of dollars have been invested in cancer research.
Two decades since that beautiful day in San Jose when I stared at that damned casket. Little progress.
Is it hopeless? Is the complex group of diseases we call cancer something we will never figure out? And is the complex neurological disorder called autism that somehow mildly affects some, while devastating the well-being of others, something we will never be able to quantify somehow?
Call me crazy, but I say not by a long shot. Human beings prevail and progress. It’s part of our makeup. We must find the answers. We have to know.
So hope remains eternal. And this week, a much-needed glimmer came my way.
When I first heard about the Cures Acceleration Network, I thought about the oak grain and the smell of that Sharpie. I thought about the worry that clouds the future, no matter how hard I try to pretend it will all be okay.
I feel validated to know that I’m not the only one who worries about the speed of science.
And the needs of those who suffer.
Who deserve to live.
And play jazz chords
And to know their grandchildren.
Who deserve to speak.
And eat chicken nuggets.
And laugh.
And to know their grandparents.
Who deserve a life with fewer white coats and fluorescent lights... and more blue skies.
Who need some help, not later but now.
Call me a dreamer... It’s the ultimate compliment.
If you're a dreamer too, please visit http://www.specterforthecure.com/.
Saturday, April 11, 2009
Autism Awareness Sibling Style
Amy brought me this letter today, asking if we could mail it to the President. I thought it was worth sharing.
She's eight, but she has a lot on her mind, that one...
******
Dear Barack Obama,
When you said the thing about the Special Olympics, it really hurt my family. My little brother, Jack, has autism and we felt like you made a joke out of him. He's a great person. Sure, he has autism. But he's the same as anyone else in the world. I think he's the best little brother in the whole world and he shouldn't be made fun of.
I am in third grade and my little brother gets notices about kindergarten but he can't go to my school. A lot of people in public make fun of him, and it makes me feel bad. My brother doesn't even seem to understand that people think that he's dumb or stupid. He is practically normal, but it's just something in his brain that makes him different.
She's eight, but she has a lot on her mind, that one...
******
Dear Barack Obama,
When you said the thing about the Special Olympics, it really hurt my family. My little brother, Jack, has autism and we felt like you made a joke out of him. He's a great person. Sure, he has autism. But he's the same as anyone else in the world. I think he's the best little brother in the whole world and he shouldn't be made fun of.
I am in third grade and my little brother gets notices about kindergarten but he can't go to my school. A lot of people in public make fun of him, and it makes me feel bad. My brother doesn't even seem to understand that people think that he's dumb or stupid. He is practically normal, but it's just something in his brain that makes him different.
Really, he's not dumb or stupid at all, but he is unique.
Now a lot of people think it's okay to make fun of people with special needs. But I think that people with special needs are strong, because they have a hard time learning. But they're trying their best.
Sincerely,
Amy Ursitti
******
We are stamping and sealing and sending this on. Special needs siblings have so much to say.
******
To read more about perspectives from siblings of kids with autism check out the new book from Ouisie Shapiro called Autism and Me. I'm so proud to say that Amy contributed to this beautiful book. I think I'll be sending a copy of it along with Amy's letter to the President.
Tuesday, March 31, 2009
Autism: April is the Sweetest Month
The sun is shining.
The snow is melting.
And hope springs eternal....
Time to flip the page on the calendar...
Happy Autism Awareness Month!
YouTube
The snow is melting.
And hope springs eternal....
Time to flip the page on the calendar...
Happy Autism Awareness Month!
YouTube
Friday, March 20, 2009
Autism: Sticks and Stones and Presidential Punchlines
"We must build a world free of unnecessary barriers, stereotypes, and discrimination.... policies must be developed, attitudes must be shaped, and buildings and organizations must be designed to ensure that everyone has a chance to get the education they need and live independently as full citizens in their communities."
-- Barack Obama, April 11, 2008
YouTube
This sort of attitude is hurtful.
Really.
I'm not saying it to be melodramatic. I genuinely feel that way.
Hurt that the leader of our country would make people with disabilities, people like my son, a punchline.
On national television.
Not. Cool.
So Mr. President, if you are reading this, I would ask you to take this situation and turn into something good. Look into the television cameras and admit that you screwed up. Tell America that the kids on the short bus are so much more than a punchline. They are hardworking heroes.
That sort of change is the change we need.
-- Barack Obama, April 11, 2008
YouTube
This sort of attitude is hurtful.
Really.
I'm not saying it to be melodramatic. I genuinely feel that way.
Hurt that the leader of our country would make people with disabilities, people like my son, a punchline.
On national television.
Not. Cool.
So Mr. President, if you are reading this, I would ask you to take this situation and turn into something good. Look into the television cameras and admit that you screwed up. Tell America that the kids on the short bus are so much more than a punchline. They are hardworking heroes.
That sort of change is the change we need.
Wednesday, March 11, 2009
Monday, March 9, 2009
Autism: Beautiful Dreamers
For everyone who thought I couldn’t do it.
For everyone who thought I shouldn’t do it.
For everyone who said, ‘It’s impossible.’
See you at the finish line.
~Christopher Reeve
The White House Blog included an entry today that brought tears to my eyes:
"At a time when the issue of stem cell research seemed to be fading from the national consciousness, a number of advocates stepped forward – as the President described this morning -- to ensure it wasn’t forgotten.
None were more passionate than Christopher and Dana Reeve. We asked Peter Wilderotter, who is the current President and CEO of the Reeves Foundation, and who attended the signing today, to tell us what the day meant to him. This is what he told us:
Last Friday marked the three-year anniversary of the death of our beloved Dana and in an instant sadness turned to hope as only she could do when we learned of the President's decision to lift the restrictions. Today in the East Room of the White House to be surrounded by so many allies and friends who fought so long on this -- I was reminded of Chris Reeves’ edict that nothing is impossible.
The eloquence of President Obama and his graceful and stirring remembrance of Chris and Dana shall echo always and be the fuel for our journey to provide today’s care as we search for tomorrow’s cures. Here is that remembrance from the President as he closed out his remarks at the ceremony today:
One of Christopher’s friends recalled that he hung a sign on the wall of the exercise room where he did his grueling regimen of physical therapy. It read: "For everyone who thought I couldn’t do it. For everyone who thought I shouldn’t do it. For everyone who said, ‘It’s impossible.’ See you at the finish line." Christopher once told a reporter who was interviewing him: "If you came back here in ten years, I expect that I’d walk to the door to greet you."
Christopher did not get that chance. But if we pursue this research, maybe one day – maybe not in our lifetime, or even in our children’s lifetime – but maybe one day, others like him might. There is no finish line in the work of science. The race is always with us – the urgent work of giving substance to hope and answering those many bedside prayers, of seeking a day when words like "terminal" and "incurable" are finally retired from our vocabulary.
Today, using every resource at our disposal, with renewed determination to lead the world in the discoveries of this new century, we rededicate ourselves to this work."
So yes, I cried when I read this. I've prayed the bedside prayers. I've kissed my only son's sweet head and worried and wondered what will become of him. On days like today, I'm sustained by the vision of the dreamers.
To Christopher, Dana and all of my fellow dreamers...
Yes ...
Here's to the dream.
See you at the finish line...
For everyone who thought I shouldn’t do it.
For everyone who said, ‘It’s impossible.’
See you at the finish line.
~Christopher Reeve
The White House Blog included an entry today that brought tears to my eyes:
"At a time when the issue of stem cell research seemed to be fading from the national consciousness, a number of advocates stepped forward – as the President described this morning -- to ensure it wasn’t forgotten.
None were more passionate than Christopher and Dana Reeve. We asked Peter Wilderotter, who is the current President and CEO of the Reeves Foundation, and who attended the signing today, to tell us what the day meant to him. This is what he told us:
Last Friday marked the three-year anniversary of the death of our beloved Dana and in an instant sadness turned to hope as only she could do when we learned of the President's decision to lift the restrictions. Today in the East Room of the White House to be surrounded by so many allies and friends who fought so long on this -- I was reminded of Chris Reeves’ edict that nothing is impossible.
The eloquence of President Obama and his graceful and stirring remembrance of Chris and Dana shall echo always and be the fuel for our journey to provide today’s care as we search for tomorrow’s cures. Here is that remembrance from the President as he closed out his remarks at the ceremony today:
One of Christopher’s friends recalled that he hung a sign on the wall of the exercise room where he did his grueling regimen of physical therapy. It read: "For everyone who thought I couldn’t do it. For everyone who thought I shouldn’t do it. For everyone who said, ‘It’s impossible.’ See you at the finish line." Christopher once told a reporter who was interviewing him: "If you came back here in ten years, I expect that I’d walk to the door to greet you."
Christopher did not get that chance. But if we pursue this research, maybe one day – maybe not in our lifetime, or even in our children’s lifetime – but maybe one day, others like him might. There is no finish line in the work of science. The race is always with us – the urgent work of giving substance to hope and answering those many bedside prayers, of seeking a day when words like "terminal" and "incurable" are finally retired from our vocabulary.
Today, using every resource at our disposal, with renewed determination to lead the world in the discoveries of this new century, we rededicate ourselves to this work."
So yes, I cried when I read this. I've prayed the bedside prayers. I've kissed my only son's sweet head and worried and wondered what will become of him. On days like today, I'm sustained by the vision of the dreamers.
To Christopher, Dana and all of my fellow dreamers...
Yes ...
Here's to the dream.
See you at the finish line...
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