This post is by Stuart Duncan, a work from home father and whose wife is a stay at home mother with Fibromyalgia, which adds a whole other layer of difficulty. They devote as much time to their children as possible because they feel that their children need love, guidance and support far more than they need a new shiny bike. They can’t provide all that they wish that they could but their family is what it is, they push forward as best they can. You can read the original post here.
For the last couple of years, I’ve really been pushing the idea of taking awareness of Autism and upgrading it to understanding and acceptance. I truly believe that, while awareness is a great start, it’s simply not enough in that, being aware of something doesn’t necessarily mean you understand it. And what most autistics need is some level of understanding and, of course, acceptance of who they are.
The thing is, you don’t have to necessarily understand every nuance about Autism… it would be nice. If everyone just instantly knew all about Autism, acceptance would be a breeze. But you don’t have to.
What you do have to understand is that there is a reason.
When you see someone acting strangely on the street corner, when you see someone being mean and rude in general, when you see someone hitting themself, when you see a person being… not what you expect… there is a reason.
Perhaps the person has a disability/special need, perhaps the person had a really bad day (fired, family member died, lost everything), perhaps the person simply is the way they are… it is not personal. It’s nothing against you.
All you need to do is understand that there is a reason. Rather than say “that person is weird” or to think about how what they’re doing affects you… instead, ask yourself what the reason could be. Perhaps it’s bigger than you think. Perhaps it’s not. But there is a reason.
It’s not always Autism… so it’s not just for autistics that I push for understanding.
But I do know this. If people stop judging and take a moment for greater understanding when they see an autistic acting “against the norm”… then perhaps those people will take a moment for greater understanding in all circumstances.
Don’t let someone lashing out at you affect your day. They had a reason and it wasn’t you. Don’t let someone acting strangely affect how you see people. They have a reason… they’re not strange.
Greater understanding… it starts when you stop taking it personally and judging the person for it.
With understanding comes acceptance… once you come to understand how a person is, how they think and who they are… you accept them. You may wish to avoid the person who lashes out at strangers when they have a bad day, but you accept them for that.
Same with people with special needs, or even just regular every day people who go about their life differently than you do.
They have a reason for being who they are just as much as you have a reason for being who you are. And if you understand that, you can accept that.
I want for people to accept me for who I am just as much as I want for people to accept my children for who they are. Not because one has Autism and not because one does not. But because they are who they are.
If you can gain understanding and acceptance for just one new person, someone you see as different than yourself, someone you do not yet know… then you can do it for anyone and everyone.
It doesn’t matter if it’s Autism, Tourettes, Down Syndrome, political differences, religious differences… anything! If you can gain greater understanding and acceptance of anyone… you have the tools necessary to do that for everyone.
Be quick to to understand…. not judge.
- You know exactly what your child is saying even though she has never said it… EVER.
- You go to visit your friends who have children and they apologize for how their kids are behaving, yet you never even noticed.
- You have ever worn more of your child’s food then he has eaten, and he is 6.
- You have ever tried “stimming” just to see what it is all about.
- Using just your peripheral vision, you can snag crayons from your child’s hand before they go in the mouth.
- You see a kid being a complete terror at the grocery store and you do not judge.
- You have been punched in the face by your child and instead of getting angry, you laugh it off.
- Your child saying, “I love you” even if by echolalia makes you feel like you are the king of the world.
- You have eaten a family dinner in the dark on several occasions.
- You have shared belly laughs with a child that you have no reason as to why they are laughing.
- You have been given every crackpot theory about what causes autism and what will make your child better, and have kept yourself from going insane.
This post is by Tim, a freelance writer and designer who works for Myself, a business that has been thumbing its nose at The Man for six years now. He’s both a stay-at-home (sounds better than ‘kept man’) and a work-at-home-and-anywhere-else-I-can-get-away-with-it dad. You can read the original post here.
Be aware that you are not alone. Be aware that there are entire communities of us – locally, online, everywhere – joining together for solidarity, support, and advocacy.
Be aware that we’ve got each other’s backs.
Be aware that not only is grief a normal part of this, it is required. Give yourself permission to go through it.
Be aware that your child is the same precious soul as the newborn baby you once held.
Be aware that some days you’ll feel like you can’t do it, but you will.
Be aware that we’re now free from being average, and are instead free to kick butt.
Be aware that autism allows amazing gifts to be expressed that otherwise would not be.
Be aware that your child will achieve something after trying so hard for so long, and you’ll feel like you all won the World Series. Be aware that this will happen regularly, and often when you least expect it.
Be aware that some days you will float on air and feel like anything is possible.
Be aware that often it is also a desperate marathon. It can feel like 26.2 miles over and over again, and you’re wearing six layers of drenched corduroy, while carrying a dump truck on your back.
Be aware that you only have to go one step at a time.
Be aware that being angry or afraid or frustrated or burned out or desperate is completely normal. If you feel completely crazy, be aware that someone else is too; it’s only when you either feel sane or feel nothing that you might want to worry.
Be aware of words like hope, advocacy, determination, community, faith, love, and perseverance, and don’t forget them.
Be aware that one thing unites us and transcends everything we disagree on – the children we love.
Be aware that there are people preying on our fears and becoming rich off of that. Be aware that there’s a special place for them, and it’s not a particularly nice one.
Be aware that autism is never the same from day to day or person to person.
Be aware that our children grow into adults and that we must fight for the rights of all.
Be aware that autism will lead you to some of the kindest, most skilled, and compassionate people in the world.
Be aware that by accepting the challenges you will experience an even greater joy when they are overcome.
Be aware that life can feel like a constant fight against somebody or something; be aware for whom you are fighting and draw strength from that.
Be aware that everyone we meet is fighting a great battle in their lives, regardless of who they or their children are. Be gracious, and model that for your kids.
Be aware that the sun does come up every morning.
Be aware that you are stronger than you think you are.
Be aware that some days all you can do is just roll up your sleeves, hike up your big boy or girl pants, and dive in.
Be aware that love is always the best therapy.
Be aware that you should never say never.
And be aware that I wouldn’t trade my life for anything.
After my run this morning, like any obsessed runner I went over to the computer, before showering, to upload my run data. As my stats wirelessly uploaded from my new toy (the Garmin 610), I manually entered my run into dailymile and then meandered over to Facebook to see what my far-flung friends were up to. I can across some pictures of a dear friend who had recently taken a trip with her family to North Carolina. Though we have not seen each other in what has to be over a decade, I have always felt a certain closeness to her and her husband. Simply put, they are good people.
As I scanned through her album, I got lost in the joy and apparent ease their children and her husband’s brother’s children had with each other. It seemed so…easy. I have to admit that there is a part of me that is jealous of what they have.
Don’t get me wrong, I wouldn’t trade Brooke for anything, and quite honestly, if someone walked up to me right now and offered me a pill that would “cure” her autism, I’m not sure what it is I would do. That being said, I wish it was easier for her. I wish that social interaction and connection were not something that she just doesn’t quite get. I wish that Katie didn’t have to feel embarrassed when Brooke made awkward social bids. I wish that I didn’t have the mindset that I have to anticipate some of those awkward bids and feel the need to cut them off at the pass. I wish, I wish, I wish…
Everybody has issues. Everybody has problems. I listen to the local moms complain about this and that. Some of them feel silly to me, but the truth is, their problems are real to them. Everybody has issues. Everybody has problems.
Ours are just different.
I just sometimes wish they weren’t.
Big Daddy brings his unique view of fatherhood, and the world at large, to life on this frequently updated and hilarious blog. His tales and cartoons from the lighter side of raising a child with autism always spark laughter and plenty of comments. By telling funny and off-beat stories from his life, Big Daddy shows that raising a kid with special needs is not all doom and gloom. To the contrary, it can be quite humorous and inspirational. You can read the original posting, ‘Sound of a Sunset,’ here.
Griffin makes a lot of noise. No. I mean A LOT of noise. If he is not sleeping there are always loud sounds emanating from him. We have the maniacal laugh and other verbal stims. There is the sound of him slapping his torso for hours on end. Most of all there are the questions. If he weren’t so cute I would swear the relentless questioning is some sort of KGB plot to drive me insane.
Sometimes, I want to tattoo, “Yes. I like elevators and Wilford is awesome,” on my forehead to at least cut out 15% of the questions I get every hour. “No. We are not moving,” and “To the bathroom. I am going to the bathroom,” would eliminate about another 9%.
Considering the relentless noise, when Griffin is quiet we get nervous. It sneaks up on you. Like the other evening when Mrs. Big Daddy and Lil Sis were out and the boys were left at home. I was doing a crossword and heard Griffin go to the kitchen with the stated purpose of getting a drink of water. I heard him fill his cup and then …. nothing. For about 45 seconds I heard nothing. He had not left the kitchen. He wasn’t giggling. I got no questions. Silence.
I went to the kitchen to investigate and there stood Griffin, staring out the window at a magnificent sunset. He turned to me, as lucid and “in our world” as I’ve ever seen him and said,
“Daddy. That’s a beautiful sunset.”
It was, without a doubt, the most beautiful sunset I had ever seen. Before I could answer him, Griffin was off to his room to start giggling and, I’m sure, to think of new ways to ask me the same questions I’ve already answered thousands of times. In the meantime, I stood in the kitchen, crying, for what seemed to be an hour.
This post is by Rob, the creator and author of the “Lost and Tired” blog and founder of Android4Autism. He is also the 33 year old father of 3 boys on the autism spectrum. Gavin is 11, Elliott is 5 and Emmett John is 3. He has been with his amazing wife Lizze for10 years and married for the past 8. You can read his, ‘Thank you for judging me…..’ post here.
If you were to walk into my house at any given time, you would find many things. Among them, the floor covered with toys and the kitchen with a sink full of dirty dishes. If you ventured into the basement you would see a mountain of dirty laundry patiently waiting to be washed. Look around some more and you would find unmade beds, stacks of unpaid bills and even some shut off notices. Some people would look at this and judging me, say that this is a reflection of me as a parent or my ability to take care of my family.
To those people, I say thank you.
Why in the world would I thank someone for saying something like that? The answer is both simple and complex all at the same time. While under different circumstances I would be insulted, hurt or even angered by those judgmental and thoughtless comments. However, I have 3 boys on the autism spectrum and a wife with chronic and often times disabling health issues.
They require ALL of my time and energy. I’m always taking the kids to therapy or to and from school. Working on language skills and even learning and teaching ASL. I make sure they are fed and clothed and as many of their unique sensory needs are met as possible. I deal with meltdowns, nightmares, sleepless nights and I must ensure everyones safety.
I need have priorities and these things are at the very top of the list. That means everything and everyone else will take a back burner.
So when you walk into my house, see the disaster and think that it’s a reflection of me or go so far as to judge me as a parent, I say thank you. I say thank you because it means I’m doing my job. It means my priorities are in the right place. Make no mistake, I would LOVE to have a clean house and be able to pay my bills. However, raising 3 autistic boys is all consuming, especially when one parent has chronic health issues.
There is only so much time in the day and only so much of me to go around. Choices have to be made. If I have to choose between a clean house, perfect credit and my kids, I will pick my kids every single time.
So thank you.
Thank you for judging me.
Thank you for showing for me that I’m doing the right thing.
Thank you for reinforcing that my priorities are in the right place.
Thank you for pointing out that everything that doesn’t really matter in life is still there waiting for my attention because it means those that do, are getting everything I have.
Autism Speaks hosted its 6th Annual Autism Law Summit on October 20-21 in Salt Lake City, Utah attracting 100 parents, advocates, lawyers, legislators and lobbyists to discuss autism insurance reform through legislation and litigation. This year’s summit was co-sponsored by the Utah Autism Coalition and the University of Utah S.J. Quinney College of Law.
At this year’s summit, Lou Melgarejo received the “Speak Out” award in recognition of “Fixing” Autism, a video he produced in honor of his daughter Bianca. The “Speak Out” Award was created to recognized those who go above and beyond in raising awareness of autism to the public through the media. As part of the award, Autism Speaks Co-founders Suzanne and Bob Wright will make a personal donation of $1000 to the Autism Speaks mission area of the recipient’s choice. Watch the video and read Lou’s acceptance speech below.
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Lou’s Acceptance Speech
“It is a real honor and a privilege to be here at the Annual Law Summit. Before I get started, I thought I should warn you that Representative Boehner has teased ME for crying too much.
This marks the second time that I have watched my “Fixing” Autism video in its entirety. It’s really tough for me to watch. I have, however, tried to read each and every comment, blog, status update, tweet about my video. The response has been overwhelming. It sounds as though I have shed as many tears reading the comments as my video has elicited from those that watched it.
As of today, “Fixing” Autism has over 93,000 views. As flattering as that is, it also makes me a touch sad. That number needs to be way higher. Those that are aware of the video and its message to end health care discrimination against people with autism spectrum disorder, and the disparity in funding are already converts. I am glad that they could take comfort from the video, but really they are not the ones that need to see my video. It is the kid that bullies a shy and awkward classmate, it’s the cranky old lady that yelled at my wife for having our daughter on a “leash”, it is the person that glares at you with a scowl because you can’t appear to control your kid, it is the family member who, when you tried to confide in them that your child was on the spectrum, they tried to tell you that your child would grow out of it… instead of just saying, “I’m so sorry. How can I help?”
The person I am trying to reach is me. Not the guy that is standing before you, but the guy that I was only 6 years ago. That guy is funny, liberal, sensitive, accepting of people with differences, but so caught up with the day-to-day minutiae of his own life that he can’t be bothered with charity work. “Everybody has a cause about something” I would say. I was so put off by everybody championing whatever disease, condition, country, animal, religion people were trying to raise money for that I started my own grassroots movement on Facebook… “The Cause Against Causes”. My first real advocacy.The goal of my movement was apathy… if you were up to it. What at first I thought was funny and tongue in cheek, now makes me sad and ashamed. I cringe when I look back at where I was.
What a shame that is took my own child becoming diagnosed with ASD for me to be motivated to become an advocate for a cause. But I don’t think that my story is an abnormal one. The vast majority of people championing a cause are doing so because somebody they know has been affected. These causes are personal. They mean something to people. It isn’t just about shaking others down for money.
So how do you get a guy like me to care about a cause if they are not affected? That is the question that runs through my mind pretty close to every waking minute of my day. How can I affect change? How do I make people see the injustice I see?
I know TV, and I know a little bit about story telling. So I have to use what I know. That is how the video came about. I have worked in the television industry for 18 years. But I can honestly tell you that of all the big events I have covered and shows I have directed, there isn’t one thing that I have done that comes close to the pride I have for my “Fixing” Autism video. The fact that an organization that I believe so strongly in like Autism Speaks helped me to spread the message, and is honoring me today with this award means more to me than I could ever put into words.
Thank you Autism Speaks. Thanks to Marc Sirkin for his amazing support and reaching out to me on Twitter to tell me how much he believed in my message. Thank you to Mike Wasmer for your support and for letting me know that my story is not an uncommon one. It is good to know you are not alone. Thank you to the Wright family. Bob doesn’t know this, but in all my years in TV, the only other recognition I have received was from NBC when he was in charge. Most importantly I want to thank my family: Thanks to my parents for all of their support;to my beautiful wife Elsa for hanging in there on this ride, life can knock you down sometimes, but we have been fighting back and trying to not let it destroy our marriage. Thanks to my kids Sofie and Luis. They are the greatest siblings in the world and they fill my life with laughter every day. And to my beautiful Bianca… she is a priceless gift. In six short years, she has taught me more than my previous 34. I am a better person for her being in my life and I love her without condition.
In closing I just want to let you know that I am aware that I am preaching to the choir here, but the choir has a very important job. It is up to the choir to fill people’s ears up with music and often times to move people to join the congregation. Let’s make certain that when we leave here this weekend that we are making noise, not just to those that are already in our flock, but to the world in the hopes that our numbers will rise. Thank you.”