Why We Walk
By Jessica Wilson
Editor's note: The opinions expressed herein are those of the author exclusively.
By Jessica Wilson
Editor's note: The opinions expressed herein are those of the author exclusively.
Below is a speech that was given by Jess Wilson at the Greater Boston Walk Now for Autism Kick-off . Watch video of Jess' speech
here.
Read Jess' blog "diary of a mom"
here.
Thank you so much, Randy. And thanks very much to this evening's speakers, Dr. Buie, Mr. Roithmayr, and Congressman Tierney.
I am truly honored to be speaking to you all this evening. I'm also scared to death, but we can get back to that later. I'll just ask for
I am truly honored to be speaking to you all this evening. I'm also scared to death, but we can get back to that later. I'll just ask for
your patience as my voice shakes and my hands tremble and I trip over my words, no matter how meticulously they may have been written.
There's got to be some rule about not following a congressman when you are not a public speaker. In the world of entertainment, they always say don't follow children or animals. They'll upstage you every time. So wouldn't it logically follow that a novice speaker who is shaking in her knickers shouldn't follow, oh I don't know - someone who speaks publicly FOR A LIVING? IN WASHINGTON? Just a thought.
You see, I'm not a scientist or a politician or one of these angels who works for Autism Speaks. I'm obviously not someone who is accustomed to being in front of a crowd. I don't even think I meet the height requirement for this podium.
But I'm a mom. I'm the mom of two beautiful, wondrous, delightful little girls, one of whom who has autism. And as so many of you know, when you love a child who has autism, you become a lot of things you never thought you could be.
You become an amateur neurologist. You become a nutritionist. You become an ad hoc behavioral therapist, floor time practitioner, playdate facilitator, occupational therapist, speech therapist, physical therapist .. name an ‘ist' you've done it. You become an IEP writer, an educational advocate, a political agitator, and a cheerleader. Whether you know it or not, you also become a hero.
Every one of you in this room is a hero to a child with autism. Whether you are a parent, a grandparent, an aunt, uncle, cousin, or friend, you are a hero. You are a hero because you're here.
You may be here to learn, to connect, to celebrate our community. Either way, by being here you are taking the time to make an incredible difference in the life of a child.
You are in the right place, my friends. Because Autism Speaks does make a difference. And together, with Autism Speaks behind us, we can make a better world for our children. We can dust ourselves off and step up on our soapboxes and we can change the world.
Every one of you in this room is a hero to a child with autism. Whether you are a parent, a grandparent, an aunt, uncle, cousin, or friend, you are a hero. You are a hero because you're here.
You may be here to learn, to connect, to celebrate our community. Either way, by being here you are taking the time to make an incredible difference in the life of a child.
You are in the right place, my friends. Because Autism Speaks does make a difference. And together, with Autism Speaks behind us, we can make a better world for our children. We can dust ourselves off and step up on our soapboxes and we can change the world.
Last summer my family and I took a trip to Nantucket. There's a wonderful lunch spot there that is famous not only for its sandwiches, but also for its beautiful backyard. We stopped in to enjoy a picnic lunch.
My littlest one, Kendall had been having a particularly rough morning and was not having an easy go of the day. In the yard at the restaurant, there were tons of kids climbing on a big old tree and tossing balls back and forth to each other.
My older daughter, Darby was six at the time. She jumped right in and naturally became a part of the joyful chaos. Her little sister tried in fits and starts to find her place in the madness, to no avail. She ultimately found comfort intently picking at the bark of the big tree as the other kids swarmed and bumped gleefully around her.
Darby took a break with me at a picnic table. She looked over at her sister and then at me and asked, ‘Mama, when did Kendall go into Kendall Land?” I told her I wasn't sure exactly and I tried to fight back tears. Her next question made the fight impossible to win. She asked, “When will she come out of it?”
I told her I really didn't know that either, but we were working very hard to help make it happen. She looked right into my eyes and said the following:
”Mama, if we all work together we can bring her home. I just know it.”
Her choice of words and the tenderness in them, the fight and steely determination in them, all the greater implications of the concept of ‘bringing her sister home' just shattered me.
Sometimes I wonder how much my older daughter really understands about the challenges that her little sister faces, and then there are the moments which transcend even what I think I know. And I am forever grateful for them.
I don't know about you, but I've learned to take my cues from the 7 and under set. My daughter is right, my friends. We can, we must, we WILL, bring these kids home to a life without the sometimes crippling frustrations of autism.
So how do we do it?
I was asked to speak to you tonight because I was somehow able to raise a pretty fair amount of money last year with my team. $17,000 to be precise. I must admit, I'm pretty damn proud of that number. That's ½ of an exploratory research grant. That's real money doing real things.
Last year was my first year walking. So when Melody Horgan approached me to ask how I did it, she was all excited to hear about bake sales or car washes or lemonade stands. I hated to disappoint her, but I did none of those things. Quite frankly I was far too busy drowning in the reality of my daughter's recent diagnosis to have managed a single one of those things. So how did I do it? How can you do it?
I did it by talking. I talked to anyone who would listen. I still do. I am hell bent on educating the world about our children. I believe, from the hair on my head to the bottom of my feet that what our children need more than anything else that we can offer them is awareness.
A child whose legs don't function properly needs a wheelchair to manage in the world. OUR children need tolerance and understanding and patience and love, all of which can only come with awareness.
So when it came time to raise money, I did what I always do. I talked. I wrote the personal story about our lunch on Nantucket on my Autism Speaks walk page and I sent it via e-mail to everyone I know. And I asked them to send it to everyone they know. And people came out of the woodwork.
So and so's nephew has Asperger's .. Wow, who knew? So and so's cousin has PDD. They're walking in Atlanta. The world got smaller. And people gave. They gave a lot.
And I kept talking. I kept talking because there are still people who don't get it. There are still the Michael Savages of the world. There are still kids out there who will be cruel.
A while back I was at a pool watching my little one drift around in a floaty. She was aimlessly wandering around the shallow end, like her own little island among various groups of kids playing with each other. She came upon three 5-6 year old girls who were enthusiastically pretending to be swimming princesses.
Kendall is a child who is incredibly (and, relative to her diagnosis, somewhat a-typically) socially motivated. As a parent, it is heartbreaking to watch her attempt to approach other kids, particularly those who don't know her. She obviously wants to engage other children, but she usually can't manage it effectively on her own. And so, what she did in order to try to join in the reindeer games was to tell the girls their names.
I'd imagine that it goes without saying that she didn't actually know their names, but that didn't deter her. She floated on over to them, insinuated herself right into the middle of their circle, and, with an outstretched little arm, she pointed at each of them in turn. “You're Maya. You say, Hi, I'm Maya.” “You're Fooey. You say, Hi, I'm Fooey.” And so on.
I watched in horror from the edge of the pool as the little leader of the pack piped up and said, “My name's NOT Maya, you weirdo! Come on you guys.” And with that, she and her little swimming princess posse turned their backs on my baby.
Now I consider myself a good person. I do. I love children. I'm an organ donor. I like rainbows and musicals and cuddly little bunnies. Yet it was all I could do not to squash that little girl.
Do I think that girl was raised badly? Not necessarily. But do I wish her parents had helped make her aware that some children may have some behaviors that look a little odd to her? That she should respect other people's feelings even when they seem ‘weird'? Yes and yes. But let's be honest. We can't expect the rest of the world to accommodate our children without understanding them.
And so, we talk.
We tell people what we live.
We tell them what it's like to see the world in too bright Technicolor. We tell them to think back to a time when they just got out of the ocean and their eyes were full of salt and they looked directly into the sun. We tell them that's what it can be like for our children when they walk into a classroom.
We tell them what it's like to hear the world in too loud, too chaotic Dolby digital sound with no volume control. We ask if they've ever had a migraine. When they did, did they ever turn on their stereo and their television, both on full blast and then have three people shout at them from different directions? We tell them that's what it can be like for our children when they walk into a restaurant.
We tell them what it's like to sit in the middle of a roomful of people talking and to follow any of it. We tell them to imagine what it would feel like to be a native English speaker who has a very little knowledge of Spanish trying to follow an argument in heavily accented Castilian. We tell them that's what it can feel for our children when they attend a birthday party.
We tell them what it's like to be completely overwhelmed by everything around them - to feel like they're standing in the middle of the track at the Indy 500 and the cars are coming at them at full speed. We tell them they too might lose their facility to calmly ask for help when they have no idea what's happening next. We tell them they'd likely panic and scream. We tell them that's what it can feel for our little ones on a soccer field.
We tell them what it's like to lack the language to express your most basic needs.
We tell them what it's like to be so sensitive to certain sounds that you live in fear of car alarms, sirens, coffee grinders, garbage disposals, horns and any of the places that you may have heard any of those sounds before.
We tell them what it's like to try desperately to interact with your peers, only to be rebuffed time and again because you can't manage the most rudimentary conversation.
We tell them what it's like to be so oversensitive to touch that a hug can be torture.
We tell them what it's like to yearn for a friend. Just one.
We tell them what it is like to live with autism.
I can't speak for you. Your child's experience is different than my child's. Your experience is different than mine.
So you need to tell them.
Tell them what it's like to tear yourself apart every day as the parent (or aunt or uncle or grandparent or cousin or colleague or friend or friend of a friend) of a child who lives with these challenges because you don't have the tools to make it better.
I'll say it again. Our children need awareness. They need acceptance and encouragement and understanding. They need patience and compassion and love.
They need us to talk. Sometimes they need us to scream.
I will say, though, sadly you might have to be a little more creative when you make your pleas this year. I heard Stephen Colbert say the other day that he put 2 quarters into the vending machine at work and he got a house. Sure feels that way lately. So although people may be willing to open their hearts this year, it might be a little tougher to get them to pry open their wallets.
So, if you have time for the bake sale, bake away. If you're up for a car wash, let me know where it is and I'll be first in line. Or, you might want to think outside the box.
For instance, this year I raffled off an ipod. Not just any ipod, mind you, but the one that I got from Autism Speaks as an incentive prize from last year's walk.
I had no idea that I'd won anything, so when the delivery came from the Apple store it was a complete surprise. And the darn thing was pretty nifty. It put the one I have to shame. Made it look like an abacus.
I thought about it for a while, and as cool as it was, I realized that there was no way that I could keep it. It just didn't feel right.
Like many I walk because I am determined to make life better for my beautiful baby girl and everyone else like her. I beg for support because I know - I KNOW - that together we can make a difference. I walk because, as a mother of a child with autism, I find it impossible not to. Taking a prize for walking would have been like getting paid for taking my kid to the park. It just felt wrong.
So I devised a plan to raffle it off. I sent out an e-mail to everyone I could think of explaining that for every $25 donated to Autism Speaks on behalf of Team Kendall, they would get one chance to win the iPod. The more they donated, the better their chances to win. If they were to donate $250, they'd have 10 chances to win.
I then asked folks to pass the e-mail onto anyone they thought might be interested.
And of course, I thanked them profusely.
I kept the raffle open for one week. Then I took all the chances, put them into the form of tickets, and placed them into a hat from which Kendall drew the winner.
People like feeling like they're getting something for their money. Sadly, human nature is what it is and good karma just ain't always enough. But that $250 ipod yielded $6000 and another $4000 in corporate matches.
It doesn't take a lot. Just some creativity and a little nerve. Here are a couple of things to keep in mind when you hit the pavement:
Ask for corporate matches. You can often easily double your donations just by reminding folks to fill out a form at their office.
Ask for donations early. Many people have long since burned through their charitable budgets by October. Don't be afraid to start now.
Create an e-mail and ask people to pass it on. Everyone these days has an electronic address book. Ask them to use it.
Thank people. Thank them publicly and thank them often. I promise you, you'll be going back to them again next year. Leave them feeling good about their donation. Tell them over and over what their generosity means to you personally.
Look through the handy dandy packets that you received tonight. They're chock full of ideas and suggestions and helpful hints. Please take the time to see what's there.
You have the tools. You might not realize that you do, but I promise you that you do. Because when you love a child with autism, you become a lot of things you never knew you could be.
Even a public speaker.
My older daughter, Darby was six at the time. She jumped right in and naturally became a part of the joyful chaos. Her little sister tried in fits and starts to find her place in the madness, to no avail. She ultimately found comfort intently picking at the bark of the big tree as the other kids swarmed and bumped gleefully around her.
Darby took a break with me at a picnic table. She looked over at her sister and then at me and asked, ‘Mama, when did Kendall go into Kendall Land?” I told her I wasn't sure exactly and I tried to fight back tears. Her next question made the fight impossible to win. She asked, “When will she come out of it?”
I told her I really didn't know that either, but we were working very hard to help make it happen. She looked right into my eyes and said the following:
”Mama, if we all work together we can bring her home. I just know it.”
Her choice of words and the tenderness in them, the fight and steely determination in them, all the greater implications of the concept of ‘bringing her sister home' just shattered me.
Sometimes I wonder how much my older daughter really understands about the challenges that her little sister faces, and then there are the moments which transcend even what I think I know. And I am forever grateful for them.
I don't know about you, but I've learned to take my cues from the 7 and under set. My daughter is right, my friends. We can, we must, we WILL, bring these kids home to a life without the sometimes crippling frustrations of autism.
So how do we do it?
I was asked to speak to you tonight because I was somehow able to raise a pretty fair amount of money last year with my team. $17,000 to be precise. I must admit, I'm pretty damn proud of that number. That's ½ of an exploratory research grant. That's real money doing real things.
Last year was my first year walking. So when Melody Horgan approached me to ask how I did it, she was all excited to hear about bake sales or car washes or lemonade stands. I hated to disappoint her, but I did none of those things. Quite frankly I was far too busy drowning in the reality of my daughter's recent diagnosis to have managed a single one of those things. So how did I do it? How can you do it?
I did it by talking. I talked to anyone who would listen. I still do. I am hell bent on educating the world about our children. I believe, from the hair on my head to the bottom of my feet that what our children need more than anything else that we can offer them is awareness.
A child whose legs don't function properly needs a wheelchair to manage in the world. OUR children need tolerance and understanding and patience and love, all of which can only come with awareness.
So when it came time to raise money, I did what I always do. I talked. I wrote the personal story about our lunch on Nantucket on my Autism Speaks walk page and I sent it via e-mail to everyone I know. And I asked them to send it to everyone they know. And people came out of the woodwork.
So and so's nephew has Asperger's .. Wow, who knew? So and so's cousin has PDD. They're walking in Atlanta. The world got smaller. And people gave. They gave a lot.
And I kept talking. I kept talking because there are still people who don't get it. There are still the Michael Savages of the world. There are still kids out there who will be cruel.
A while back I was at a pool watching my little one drift around in a floaty. She was aimlessly wandering around the shallow end, like her own little island among various groups of kids playing with each other. She came upon three 5-6 year old girls who were enthusiastically pretending to be swimming princesses.
Kendall is a child who is incredibly (and, relative to her diagnosis, somewhat a-typically) socially motivated. As a parent, it is heartbreaking to watch her attempt to approach other kids, particularly those who don't know her. She obviously wants to engage other children, but she usually can't manage it effectively on her own. And so, what she did in order to try to join in the reindeer games was to tell the girls their names.
I'd imagine that it goes without saying that she didn't actually know their names, but that didn't deter her. She floated on over to them, insinuated herself right into the middle of their circle, and, with an outstretched little arm, she pointed at each of them in turn. “You're Maya. You say, Hi, I'm Maya.” “You're Fooey. You say, Hi, I'm Fooey.” And so on.
I watched in horror from the edge of the pool as the little leader of the pack piped up and said, “My name's NOT Maya, you weirdo! Come on you guys.” And with that, she and her little swimming princess posse turned their backs on my baby.
Now I consider myself a good person. I do. I love children. I'm an organ donor. I like rainbows and musicals and cuddly little bunnies. Yet it was all I could do not to squash that little girl.
Do I think that girl was raised badly? Not necessarily. But do I wish her parents had helped make her aware that some children may have some behaviors that look a little odd to her? That she should respect other people's feelings even when they seem ‘weird'? Yes and yes. But let's be honest. We can't expect the rest of the world to accommodate our children without understanding them.
And so, we talk.
We tell people what we live.
We tell them what it's like to see the world in too bright Technicolor. We tell them to think back to a time when they just got out of the ocean and their eyes were full of salt and they looked directly into the sun. We tell them that's what it can be like for our children when they walk into a classroom.
We tell them what it's like to hear the world in too loud, too chaotic Dolby digital sound with no volume control. We ask if they've ever had a migraine. When they did, did they ever turn on their stereo and their television, both on full blast and then have three people shout at them from different directions? We tell them that's what it can be like for our children when they walk into a restaurant.
We tell them what it's like to sit in the middle of a roomful of people talking and to follow any of it. We tell them to imagine what it would feel like to be a native English speaker who has a very little knowledge of Spanish trying to follow an argument in heavily accented Castilian. We tell them that's what it can feel for our children when they attend a birthday party.
We tell them what it's like to be completely overwhelmed by everything around them - to feel like they're standing in the middle of the track at the Indy 500 and the cars are coming at them at full speed. We tell them they too might lose their facility to calmly ask for help when they have no idea what's happening next. We tell them they'd likely panic and scream. We tell them that's what it can feel for our little ones on a soccer field.
We tell them what it's like to lack the language to express your most basic needs.
We tell them what it's like to be so sensitive to certain sounds that you live in fear of car alarms, sirens, coffee grinders, garbage disposals, horns and any of the places that you may have heard any of those sounds before.
We tell them what it's like to try desperately to interact with your peers, only to be rebuffed time and again because you can't manage the most rudimentary conversation.
We tell them what it's like to be so oversensitive to touch that a hug can be torture.
We tell them what it's like to yearn for a friend. Just one.
We tell them what it is like to live with autism.
I can't speak for you. Your child's experience is different than my child's. Your experience is different than mine.
So you need to tell them.
Tell them what it's like to tear yourself apart every day as the parent (or aunt or uncle or grandparent or cousin or colleague or friend or friend of a friend) of a child who lives with these challenges because you don't have the tools to make it better.
I'll say it again. Our children need awareness. They need acceptance and encouragement and understanding. They need patience and compassion and love.
They need us to talk. Sometimes they need us to scream.
I will say, though, sadly you might have to be a little more creative when you make your pleas this year. I heard Stephen Colbert say the other day that he put 2 quarters into the vending machine at work and he got a house. Sure feels that way lately. So although people may be willing to open their hearts this year, it might be a little tougher to get them to pry open their wallets.
So, if you have time for the bake sale, bake away. If you're up for a car wash, let me know where it is and I'll be first in line. Or, you might want to think outside the box.
For instance, this year I raffled off an ipod. Not just any ipod, mind you, but the one that I got from Autism Speaks as an incentive prize from last year's walk.
I had no idea that I'd won anything, so when the delivery came from the Apple store it was a complete surprise. And the darn thing was pretty nifty. It put the one I have to shame. Made it look like an abacus.
I thought about it for a while, and as cool as it was, I realized that there was no way that I could keep it. It just didn't feel right.
Like many I walk because I am determined to make life better for my beautiful baby girl and everyone else like her. I beg for support because I know - I KNOW - that together we can make a difference. I walk because, as a mother of a child with autism, I find it impossible not to. Taking a prize for walking would have been like getting paid for taking my kid to the park. It just felt wrong.
So I devised a plan to raffle it off. I sent out an e-mail to everyone I could think of explaining that for every $25 donated to Autism Speaks on behalf of Team Kendall, they would get one chance to win the iPod. The more they donated, the better their chances to win. If they were to donate $250, they'd have 10 chances to win.
I then asked folks to pass the e-mail onto anyone they thought might be interested.
And of course, I thanked them profusely.
I kept the raffle open for one week. Then I took all the chances, put them into the form of tickets, and placed them into a hat from which Kendall drew the winner.
People like feeling like they're getting something for their money. Sadly, human nature is what it is and good karma just ain't always enough. But that $250 ipod yielded $6000 and another $4000 in corporate matches.
It doesn't take a lot. Just some creativity and a little nerve. Here are a couple of things to keep in mind when you hit the pavement:
Ask for corporate matches. You can often easily double your donations just by reminding folks to fill out a form at their office.
Ask for donations early. Many people have long since burned through their charitable budgets by October. Don't be afraid to start now.
Create an e-mail and ask people to pass it on. Everyone these days has an electronic address book. Ask them to use it.
Thank people. Thank them publicly and thank them often. I promise you, you'll be going back to them again next year. Leave them feeling good about their donation. Tell them over and over what their generosity means to you personally.
Look through the handy dandy packets that you received tonight. They're chock full of ideas and suggestions and helpful hints. Please take the time to see what's there.
You have the tools. You might not realize that you do, but I promise you that you do. Because when you love a child with autism, you become a lot of things you never knew you could be.
Even a public speaker.
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