The autism community is abuzz about this article from the NY Times today.
Basically, a narrowing of what it means to have autism is being proposed. Many who currently fall onto the autism spectrum due to their diagnosis of Asperger's or PDD-NOS could find themselves excluded. The new criteria would greatly reduce the rate of autism, the "epidemic" would come to an end.
My child has officially had autism for three years now, but if these changes go through, he may no longer fit the bill.
My boy will remain the same boy he is now, nothing but the label would change.
But there is a lot more at stake here than a war of words. We would lose our solidarity. Being part of the autism community means something. It means you know where to go to seek support or understanding. It allows you to understand better your family member, your loved one, or even yourself. For many, stripping away the label may mean a loss of services, supports, or understaning.
Taking the label from a person will not strip them of their disability.
Taking away their access to services will not strip them from their needs.
Autism is real. The surge of autism is real. The needs of this group of individuals and their families are very real too. Changing the criteria is not going to change reality.
Has the medical community lost hope? Trying to diminish the truth of autism and its prevalance seems to me akin to sticking their head in the sand. They`re confused by it, it is an enigma, but changing around words to make the ìssues seem less than they are isn`t going to change anything.
Accept it, we have.
Friday, January 20, 2012
Saturday, December 24, 2011
Merry Christmas
The children are sleeping.
The turkey's defrosting.
All is right in our world, the magic and excitement of Christmas morning is just one night's sleep away.
We have decided to focus on keeping Christmas as enjoyable as possible for the kids.
And yes that means we won't get to do all of the things we might like to do, or go all the places we'd like to go, but that's okay. Christmas is best enjoyed when those you hold dearest actually enjoy it.
It's okay if your holidays are quiet and low key, it's often in our quiet moments that we truly feel its magic.
Merry Christmas to you all, may the peace of the season stay with you all year long.
Natalie
The turkey's defrosting.
All is right in our world, the magic and excitement of Christmas morning is just one night's sleep away.
We have decided to focus on keeping Christmas as enjoyable as possible for the kids.
And yes that means we won't get to do all of the things we might like to do, or go all the places we'd like to go, but that's okay. Christmas is best enjoyed when those you hold dearest actually enjoy it.
It's okay if your holidays are quiet and low key, it's often in our quiet moments that we truly feel its magic.
Merry Christmas to you all, may the peace of the season stay with you all year long.
Natalie
Tuesday, December 13, 2011
iBelieve
The iPad. Such a little word, such a little device.
Well, this is definately a case of good things coming in small packages.
When all the buzz about the iPad and the wonders it does for people on the autism spectrum began, most of what I heard and read was about the wonder of the doors it had unlocked for our non-verbal population. Suddenly this small, portable device could replace cumbersome, expensive augmented communication devices. Amazing.
Still, I didn't see at first how helpful it could be for my own child with Asperger's. Then I started googling. And reading. And watching YouTube videos of it in use. Of course some of the best reviews I read came from other autism-moms who were blogging about the difference it was making in their homes. I was intrigued.
My own boy has been blessed enough to have an iPad. He's had it now for a few months. None of my research had prepared me for the magic that has happened.
My dream is that someday the world itself will be as accessible as the iPad.
It would be impossible for me to list, or even probably recognize all of the things the iPad has done for us, but I will attempt to give a little overview, just in case there is a reader out there somewhere who is wondering if this is something you need. (My guess is that it is.)
Touch, swipe, pinch. If you had a child with fine motor issues, or motor-planning issues, say goodbye to the mouse. If you can reach it you can do it. The playing field has been leveled, game on. Now your child can enjoy playing games without that level of frustration standing in his way.
The bag of tricks just shrank. The iPad is best known for its apps. Apps are awesome, and there are about 10 gazillion and counting designed for autism. This tiny little device is currently housing Social Stories, visual schedules, a Time Timer, a 5 point scale, Model Me Going Places....and more. Way, way more. Seriously.
Educational activities. This is a homeschool dream come true! Sight words, ebooks, mathematical games and drills, all manners of skill builders are available. If they are not free, they are generally pretty cheap. Aiden enjoys almost any subject more when the iPad is involved, particularily with math. From interactive number lines, to Google earth, there seems to be no end to the ways the iPad makes learning fun, and engaging, and almost everything becomes hands on with this thing.
Entertainment and Independance. Imagine that your child can now take control of their leisure time! No more asking someone else to turn on something, or set something up for them, everything is easy to do. If you spend a lot of time in waiting rooms for a gazillion appointments, as our kids tend to do, then your wait time just got a lot easier. Even if you go the wi fi route, many games do not need internet connection, so they are portable!
We need to get the iPad into the hands of every child on the autism spectrum, or into the hands of any child who has challenges that would benefit from it. This is the future of accessibility, and it is affordable.
Christmas is a time when many people seek out opportunities to do good work. Many charities benefit from the benevolance of others at this time. I have a suggestion. Maybe you could take up a collection at your place of work, and raise enough money to purchase an iPad or two. Contact a local autism group in your community, a simple google search can help you here, and maybe they can pass your gift on to a deserving child.
It's more than a simple present to be opened, it's the opening up of a child's world.
I believe the possibilities are boundless.
 |
| Get it? A yellow apple? |
When all the buzz about the iPad and the wonders it does for people on the autism spectrum began, most of what I heard and read was about the wonder of the doors it had unlocked for our non-verbal population. Suddenly this small, portable device could replace cumbersome, expensive augmented communication devices. Amazing.
Still, I didn't see at first how helpful it could be for my own child with Asperger's. Then I started googling. And reading. And watching YouTube videos of it in use. Of course some of the best reviews I read came from other autism-moms who were blogging about the difference it was making in their homes. I was intrigued.
My own boy has been blessed enough to have an iPad. He's had it now for a few months. None of my research had prepared me for the magic that has happened.
My dream is that someday the world itself will be as accessible as the iPad.
It would be impossible for me to list, or even probably recognize all of the things the iPad has done for us, but I will attempt to give a little overview, just in case there is a reader out there somewhere who is wondering if this is something you need. (My guess is that it is.)
Touch, swipe, pinch. If you had a child with fine motor issues, or motor-planning issues, say goodbye to the mouse. If you can reach it you can do it. The playing field has been leveled, game on. Now your child can enjoy playing games without that level of frustration standing in his way.
The bag of tricks just shrank. The iPad is best known for its apps. Apps are awesome, and there are about 10 gazillion and counting designed for autism. This tiny little device is currently housing Social Stories, visual schedules, a Time Timer, a 5 point scale, Model Me Going Places....and more. Way, way more. Seriously.
Educational activities. This is a homeschool dream come true! Sight words, ebooks, mathematical games and drills, all manners of skill builders are available. If they are not free, they are generally pretty cheap. Aiden enjoys almost any subject more when the iPad is involved, particularily with math. From interactive number lines, to Google earth, there seems to be no end to the ways the iPad makes learning fun, and engaging, and almost everything becomes hands on with this thing.
Entertainment and Independance. Imagine that your child can now take control of their leisure time! No more asking someone else to turn on something, or set something up for them, everything is easy to do. If you spend a lot of time in waiting rooms for a gazillion appointments, as our kids tend to do, then your wait time just got a lot easier. Even if you go the wi fi route, many games do not need internet connection, so they are portable!
We need to get the iPad into the hands of every child on the autism spectrum, or into the hands of any child who has challenges that would benefit from it. This is the future of accessibility, and it is affordable.
Christmas is a time when many people seek out opportunities to do good work. Many charities benefit from the benevolance of others at this time. I have a suggestion. Maybe you could take up a collection at your place of work, and raise enough money to purchase an iPad or two. Contact a local autism group in your community, a simple google search can help you here, and maybe they can pass your gift on to a deserving child.
It's more than a simple present to be opened, it's the opening up of a child's world.
I believe the possibilities are boundless.
Tuesday, November 22, 2011
Concern
``So, how’s he doing?``
I don’t know how to answer this question. This question I get asked all the time.
What part of his life are you asking about? Do you want to know if he’s healthy? Do you want to know how he’s doing with his schoolwork? Do you want to know if he’s eating well, sleeping well?
Maybe you’re interested in how he’s doing in comparison to other kids his age. Your sister’s son, or some other point of reference you have for a child his age.
Could be you want to know if he’s happy, if his life is a peaceful, joyous place.
There are so many facets to how he’s doing, and all of these could be placed affront a myriad of backdrops.
How he’s doing today might be different than how he was doing last week, or yesterday. How he’s doing right now might be different than how he was doing an hour ago, or five minutes ago.
I’m not even sure if you’re really all that interested. You could just be making small talk, or showing concern because there’d be a hole in the conversation if you didn’t. Then again, maybe you would really like to know. Perhaps if I took this opportunity to really talk, to really answer your enormous equestion in its entirety you would be the person to listen. (a big risk for me to take)
Are you really asking how he`s doing, or is this just a code to ask how I`m doing.
I fumble, perhaps look down, perhaps plaster a smile upon my face as I consider my response. A weighted silence preceeds my reply.
``Good, he’s doing good.``
Thanks for asking.
I don’t know how to answer this question. This question I get asked all the time.
What part of his life are you asking about? Do you want to know if he’s healthy? Do you want to know how he’s doing with his schoolwork? Do you want to know if he’s eating well, sleeping well?
Maybe you’re interested in how he’s doing in comparison to other kids his age. Your sister’s son, or some other point of reference you have for a child his age.
Could be you want to know if he’s happy, if his life is a peaceful, joyous place.
There are so many facets to how he’s doing, and all of these could be placed affront a myriad of backdrops.
How he’s doing today might be different than how he was doing last week, or yesterday. How he’s doing right now might be different than how he was doing an hour ago, or five minutes ago.
I’m not even sure if you’re really all that interested. You could just be making small talk, or showing concern because there’d be a hole in the conversation if you didn’t. Then again, maybe you would really like to know. Perhaps if I took this opportunity to really talk, to really answer your enormous equestion in its entirety you would be the person to listen. (a big risk for me to take)
Are you really asking how he`s doing, or is this just a code to ask how I`m doing.
I fumble, perhaps look down, perhaps plaster a smile upon my face as I consider my response. A weighted silence preceeds my reply.
``Good, he’s doing good.``
Thanks for asking.
Sunday, October 23, 2011
Unwrap Slowly
The other day Aiden hauled out his baby scrapbook, and of course, once it's in sight, I had to go through it.
It's funny the tug of loss I feel when looking at pictures of my children as babies. Because it doesn't feel that long ago, but when I poke through those pages I'm forced to acknowledge the passing of the years. There's no denying it.
I'm often entranced by Aiden's baby pics. Searching for clues, staring at his face. I'm mostly brought back to that time, when I believed I'd already met my little boy. I guess when he was so young I thought i knew him, that all my ideas of who he would be were real, not just my imaginings.
I thought I'd already opened the gift that was my boy. I thought that when he was born that the wrapping paper had already been torn off fully.
I was so wrong. In reality I've been tearing away at the gift wrap bit by bit, piece by piece. Every now and again I think I know what's inside, tease myself with hints, predictions. Kind of like when you're fondling a gift before Christmas, certain you've figured out what's hiding beneath, only to be thrown off by the feel of something you can't quite explain. I was sure this was a blanket, so what's that hard lump I'm feeling? Back to step one in the guessing game.
I've always thought that a glimpse of the future would help quell all of my fears. But maybe children aren't meant to expose themselves all at once. Maybe none of them do. Perhaps we let our own ideas of who they are interfere with who they were going to be. We kind of set their course for them, almost accidentally.
So I guess I'll keep on tearing slowly, peaking inside, guessing and dreaming.
Because the gift of my boy is meant to be savoured. No rush, I'll unwrap slowly.
It's funny the tug of loss I feel when looking at pictures of my children as babies. Because it doesn't feel that long ago, but when I poke through those pages I'm forced to acknowledge the passing of the years. There's no denying it.
I'm often entranced by Aiden's baby pics. Searching for clues, staring at his face. I'm mostly brought back to that time, when I believed I'd already met my little boy. I guess when he was so young I thought i knew him, that all my ideas of who he would be were real, not just my imaginings.
I thought I'd already opened the gift that was my boy. I thought that when he was born that the wrapping paper had already been torn off fully.
I was so wrong. In reality I've been tearing away at the gift wrap bit by bit, piece by piece. Every now and again I think I know what's inside, tease myself with hints, predictions. Kind of like when you're fondling a gift before Christmas, certain you've figured out what's hiding beneath, only to be thrown off by the feel of something you can't quite explain. I was sure this was a blanket, so what's that hard lump I'm feeling? Back to step one in the guessing game.
I've always thought that a glimpse of the future would help quell all of my fears. But maybe children aren't meant to expose themselves all at once. Maybe none of them do. Perhaps we let our own ideas of who they are interfere with who they were going to be. We kind of set their course for them, almost accidentally.
So I guess I'll keep on tearing slowly, peaking inside, guessing and dreaming.
Because the gift of my boy is meant to be savoured. No rush, I'll unwrap slowly.
Monday, October 3, 2011
Why Awareness Matters (a lot)
I know that many people know what autism is. I also know that many people understand that it is skyrocketing. But what I really want is to help in creating a community of compassion for those affected by autism, and their families.
11 year olf Mitchell Wilson recently took his own life because of a violent attack from another young boy, himself just 12. I, like many am disguisted by the incident. Baffled at how another child could behave this way. But I think we are kidding ourselves if we believe that this 12 year old was anything but a product of society. Our society. We have to ask ourselves how we failed Mitchell, and how we failed the other boy as well.
Holding the 12 year old responsible for his actions is one thing, but not taking pause to question why it happened, and how we all hold some responsibility would be negligent. Because there will be other Mitchells. There already are.
Somehow, in the busy days of ferrying our sons and daughters from soccer and hockey and back again, we have forgotten to teach our own children. Schools may teach your children to read and write, and how to add and subtract, but it is not their job to dispense morals.
Parents, talk to your children. Start young. Help them to become good, solid people. Kindness comes naturally to children, foster it, encourage it, praise it. Young children ae accepting, we learn to fear that which is different. Don't let them learn this fear from you. Racism, sexism, homophobia are not natural to the garden of a child's mind, they are dangerous seeds that get planted. Once they take root, they can be difficult to get rid of. Protect it dearly.
Don't stop at teaching your child to say please and thank you. Surface manners aren't enough. Teach them compassion, selflessness, and respect. Teach them that different is not less . (That's Temple's mama talking) Make sure that they know that how they act matters. Teach them that you are holding them to a high standard. Act as an example for your children.
There may not be any ribbons, trophies, or first places for having a strong character, but it matters more than anything else. Than everything else, put together.
This October, talk to your children about what autism is. Most likely they have a child with autism in their classroom. But don't stop at giving them a definition.
And my family will be grateful to you.
Friday, September 23, 2011
Pop Culture's Embrace
You know your syndrome is popular when it pops up on t.v. Currently we have two shows that arefeaturing Asperger's, albeit in completely different ways.
On NBC's Parenthood, we meet young Max Braverman. The focus here is on Max's parents, and mostly how they deal with tough choices they have to make concerning him. We watched as they struggled with getting Max diagnosed, planned a dreaded birthday party, dealt with the grandfather not-really-getting-it, cringed at Max's candor. When Max's dad lost it with a rude man at the supermarket, we equally cheered him on and felt his pain. Now that Max has been placed back in public school, we're all holding our breath.
Parenthood puts Asperger's in a family context. Sometimes when I'm watching I can laugh at the little things or fret right along with the parents. We see how Max benefits from a loving support system. We also see the eye-rolling of his classmates. Sometimes it is a joy to watch, sometimes it is downright sobering.
,
And then, the polar opposite is The Big Bang Theory. We have non-diagnosed Dr. Sheldon Cooper, complete with his rigidity, his literalness, his brilliance. He is Aspergers to the power of a billion. Asperger's on bust. And I love it.
Sure, I like the show for all the same reasons as everyone else. It's hilarious, the characters are as endearing as they are obnoxious.
But I also like it because it is to me, an Asperger's success story. In no way, shape or form does Sheldon blend in, his autism is a fireworks display. It's why we love him. Sheldon is a success because he turned his areas of interest into a noteworthy career. He is a fully independant adult (ok, with the exception of his driver's license....) and above all else, he has an active social group.
Yes, his friends find his ways downright painful at times, but overall, they accept him for who he is, they order from the right restaurants on the right nights, they play the games allocated to each weekday. Sure, they make fun of him right to his face, but all good friends do.
I think it's fair to say that this much air time means we've made it. Our particular disability has managed to capture the attention and imagination of the world. It's nice to see something of our lives reflected back to us, in ways that can tug at our heartstrings, or grab us right by the funny bone.
Parenthood puts Asperger's in a family context. Sometimes when I'm watching I can laugh at the little things or fret right along with the parents. We see how Max benefits from a loving support system. We also see the eye-rolling of his classmates. Sometimes it is a joy to watch, sometimes it is downright sobering.
,
 |
| Bazinga! |
Sure, I like the show for all the same reasons as everyone else. It's hilarious, the characters are as endearing as they are obnoxious.
But I also like it because it is to me, an Asperger's success story. In no way, shape or form does Sheldon blend in, his autism is a fireworks display. It's why we love him. Sheldon is a success because he turned his areas of interest into a noteworthy career. He is a fully independant adult (ok, with the exception of his driver's license....) and above all else, he has an active social group.
Yes, his friends find his ways downright painful at times, but overall, they accept him for who he is, they order from the right restaurants on the right nights, they play the games allocated to each weekday. Sure, they make fun of him right to his face, but all good friends do.
I think it's fair to say that this much air time means we've made it. Our particular disability has managed to capture the attention and imagination of the world. It's nice to see something of our lives reflected back to us, in ways that can tug at our heartstrings, or grab us right by the funny bone.
Wednesday, September 7, 2011
The First Day of School
With a quick view of my facebook homepage these last few days, I've been noticing quite a split.
Many, many people are excitedly posting status updates concerning which grade their children are starting, and many are sharing that their little ones are stepping onto that great yellow bus for their first time ever this morning.
These updates are so lighthearted, joyful, a mixture of pride, and wonderment at the quickly passing years.
And then there are the updates from people I know through the autism community. All about the preperation they are doing with their children, and their schools, praying for a smooth transition from summer into school, from one grade to another, from old teacher to new. Many links are being shared to informative articles about how best to work with your school, any and all tips that could possibly make this easier.
These updates are painful. Their writers are scared, stressed, it's palpable.
When I read these updates, I feel guilty. I have personally been counting down to the start of school. For me, that means that our parks and playgrounds can be reclaimed. Local attractions will return to the lazy pace of the school year. Our city becomes quiet, calm, in a word: accessible.
If I didn't comment on your status update, I'm doing it now.
To all of you who are experiencing the joy, and excitement of your babies moving on up through the grades, and starting the season of their life when they enter school, congratulations! They are indeed growing up fast, and it is amazing to watch how in such little time, my kids and yours can grow and learn so much. It warms my heart to see the pride you feel, witnessing the joy of parenthood can do that. Your children are blessed to be so loved.
For those of you who are facing today with a strong dose of courage, and a belly full of fear, I am astounded at your courage, and stand in awe of you. I have no doubt your stress translates to dilligence, and my hope for you is that your school and teacher see your concerns and fear as the face of the love you have for your child. Good luck to you today, and indeed all year long. May you be blessed with one of the many caring teachers out there who embrace the role of teaching, and see all students success as both their responsibility and joy.
Many, many people are excitedly posting status updates concerning which grade their children are starting, and many are sharing that their little ones are stepping onto that great yellow bus for their first time ever this morning.
These updates are so lighthearted, joyful, a mixture of pride, and wonderment at the quickly passing years.
And then there are the updates from people I know through the autism community. All about the preperation they are doing with their children, and their schools, praying for a smooth transition from summer into school, from one grade to another, from old teacher to new. Many links are being shared to informative articles about how best to work with your school, any and all tips that could possibly make this easier.
These updates are painful. Their writers are scared, stressed, it's palpable.
When I read these updates, I feel guilty. I have personally been counting down to the start of school. For me, that means that our parks and playgrounds can be reclaimed. Local attractions will return to the lazy pace of the school year. Our city becomes quiet, calm, in a word: accessible.
If I didn't comment on your status update, I'm doing it now.
To all of you who are experiencing the joy, and excitement of your babies moving on up through the grades, and starting the season of their life when they enter school, congratulations! They are indeed growing up fast, and it is amazing to watch how in such little time, my kids and yours can grow and learn so much. It warms my heart to see the pride you feel, witnessing the joy of parenthood can do that. Your children are blessed to be so loved.
For those of you who are facing today with a strong dose of courage, and a belly full of fear, I am astounded at your courage, and stand in awe of you. I have no doubt your stress translates to dilligence, and my hope for you is that your school and teacher see your concerns and fear as the face of the love you have for your child. Good luck to you today, and indeed all year long. May you be blessed with one of the many caring teachers out there who embrace the role of teaching, and see all students success as both their responsibility and joy.
Sunday, August 28, 2011
Um....Not Quite.
 |
| Mariokart's Coconut Mall |
One thing he loves to watch is videos of people playing Mariokart. I think he'd rather watch people play the game on YouTube than play it himself! But, through the power of YouTube, he has discovered videos of people who have hacked the games, who have found ways to explore parts of the race tracks that we aren't meant to access. For Aiden, this is inexplicably exciting.
Now, not to make a generalization, but I've heard other parents say the same things about their children on the autism spectrum... like my boy, they prefer to explore the worlds of video games than to play them in their intended ways. Aiden could care less about winning first place in a race on Mariokart, he just enjoys looking around, seeing where he can get, that kind of stuff. He draws countless pictures of the worlds depicted there, with stunning detail, because that's how he enjoys the game.
So, he is quite interested in how these online hackers are able to get all of those cool places. Neither hubby nor I could ever be confused for computer game enthusiasts, and certainly not experts. We are both able to use techology in general to meet our needs, but the inner workings of it remain both mysterious and magical. You can imagine the dissapointment our lack of knowledge brings to our six year old. He wants us to find a "computering person" to help him with his quest.
Upon harrassment to help him explore the off-track locations in places like Toad's Factory and Coconut Mall, we patiently explained to him that you need to be able "to write code" to hack these games.
He went off on his own for a while... then returned proudly holding up a sheet of paper.
"Mommy, Daddy, I wrote code! "
So you did baby, so you did.
Sunday, August 21, 2011
What You Might Not Know
I'd be lying if I said I've got it easy.
When even a simple trip to Walmart takes planning, and a dose of courage.
I'd be lying if I said that although homeschooling is the best possible choice for us, that it's easy.
It is a ton of work, a ton of planning, a rather mighty big project overall, home educating your child.
I'd be lying if I said that it doesn't smart to have three university degrees, and no career.
When you spot me at the grocery store in sweat pants, possibly pulling my child away from the grimy cleaning cart, "highly educated" probably isn't the adjective that jumps into your head.
But, you might not know that although parenting a child with special needs was never planned, it is an unimaginable priveledge. A daily reminder of keeping perspective, appreciating your gifts and loving to the hilt. You might be surprised to know that even though my child may require a lot of extra work, that it is worth it. I would'nt trade one day with him for anything.
You might be surprised to know that I do not wish him any other way. That the sight of your typical child stirs up no jealousy in me. Of course I do not wish him challenges or a life filled with obstacles, but he is who he is, and I am wouldn't trade him for the world. That I'm not looking for miracle cures, just support and acceptance.
You might not know that being responsible for our boy makes me feel special too.
When even a simple trip to Walmart takes planning, and a dose of courage.
I'd be lying if I said that although homeschooling is the best possible choice for us, that it's easy.
It is a ton of work, a ton of planning, a rather mighty big project overall, home educating your child.
I'd be lying if I said that it doesn't smart to have three university degrees, and no career.
When you spot me at the grocery store in sweat pants, possibly pulling my child away from the grimy cleaning cart, "highly educated" probably isn't the adjective that jumps into your head.
But, you might not know that although parenting a child with special needs was never planned, it is an unimaginable priveledge. A daily reminder of keeping perspective, appreciating your gifts and loving to the hilt. You might be surprised to know that even though my child may require a lot of extra work, that it is worth it. I would'nt trade one day with him for anything.
You might be surprised to know that I do not wish him any other way. That the sight of your typical child stirs up no jealousy in me. Of course I do not wish him challenges or a life filled with obstacles, but he is who he is, and I am wouldn't trade him for the world. That I'm not looking for miracle cures, just support and acceptance.
You might not know that being responsible for our boy makes me feel special too.
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