Tuesday, April 2, 2013

Happy Autism AWARENESS Day! Yes, that's right I said Awareness!



(originally written & published on April 2, 2013)


Today is World Autism Awareness Day.  But as usual, within our autism community people are having debates about whether it should be "awareness" or "acceptance" or "equality" day. 

And, as usual, within our autism community some people are shouting & fighting.

Perfect example, I posted an innocent picture on my Autism Daddy Facebook Page of some blue cookies my wife sent in for the teachers & students in my autistic son's class with the caption, "The wife made these blue cookies and sent them in to the king's school today to help celebrate youknowwhat day."




And this was one of the comments.


What's with all the "awareness"? With 1 in 50 numbers and crazy theories coming out (like old grandfathers, abused moms, too much tv, etc.), I think the "awareness" part is covered. Sorry, but what good are cookies at this point? Are the teachers unaware? Will this increase action to find the REAL cause? I'm stumped every year with this need for "awareness."


Now, my wife didn't do this to change the world…or to make the teachers more aware.  She did this cuz she likes to bake and she likes to celebrate and be a part of things. 

She dressed my son in red & made red cupcakes for Valentine's Day.
She dressed him in green and made green cookies for St Patty's Day (and we are not even Irish).
And today she dressed him in blue and made blue cookies for Autism Awareness Day.

And that's probably about all we will do to “celebrate” the day and/or to make people more “aware”.

But for the people that say the outside world should be "aware" by now.  You're wrong.  You're living in your autism bubble. 

To you and to me, it seems that autism is in the news EVERY FREAKING DAY.  But that's because we are seeking out that news. 

Admit it, you have a google news alert set to feed you all the autism news of the day.

Or most of your friends on FB are also in the autism trenches so you're FB newsfeed is filled with autism stories EVERY day.

Admit it you are obsessed with reading blogs written by autism moms & especially dads.  :-)

So, to you, it seems like the world is drowning in autism awareness.

But it's not true.  You're only reading about autism if you want to read about autism.

If you're a typical parent, and you watch the evening news every night, check out CNN.com a few times a week, and read your local newspaper every day you're probably not that aware of autism. 

Think about the types of & the frequency of autism stories that hit those sources on a weekly basis.

They are few and far between. 

And the types of autism stories that do make the mainstream media usually fall into 3 categories…

1) feel good stories about typical people being nice to autistic kids like this new one from ABC News, “Autistic Girl's 'BrokenCheeseburger' Story Goes Viral”


2) autistic kids doing great & surprising things like this old one from CBS.  (this one has been spread around the web for over 3 years now) “Autistic Teen's Hoop Dreams Come True”

3) As the person commented above, theories about causes or links to autism, like this one from a few weeks back, “AUTISM: UCLA study findsair pollution correlation” 

And I’m not against any of those types of news stories.  They are all valid and they all show a side of autism.  But seeing maybe 5-6 stories like this a month doesn’t make you “autism aware” in my mind. 

So I think having a day and a month where we try to be upfront with the rest of the world, and be even more present in the mainstream media is not a bad thing. 

Autism Awareness Day & Month is really not for us.  It’s not for us living in the autism trenches.

The Day & Month are for the rest of the world…to help them be more “aware”.

Having autism awareness day & month just forces the mainstream media to throw a few more autism stories on the air.  And hopefully one or two will be different, and not fall into the 3 categories above.  And hopefully one or two will get into the “1 in 50” number, make people more “aware” of the epidemic we have on our hands. 

Again, I know, I know, you’re thinking, “It’s freaking 1 in freaking 50!  How can they not be aware by now!”

Trust me, they are not.

And if I wasn’t an autism parent, I would not be aware.  I would not be setting a google news alert to feed me all autism news stories.  I wouldn’t be reading autism parent blogs.  If I was a typical parent, I’d be digesting the autism news that I happen to stumble across while I’m looking for the sports section of the paper.





I think if I was a "typical" dad and went into a family member's autism home (or had them over my home) I would be extremely concerned & compassionate & would bend over backwards to make them feel comfortable and make any accommodations to make things easier for them...but once they left, I'd probably be "out of sight out of mind" 

I'd get bogged down in my own problems & issues, which to the autism parents would seem absolutely minuscule.  This is what happens to most family & friends I think...because when they are living in their own "shit", whatever it may be...(my kid is failing spelling, my kid is 3 and not potty trained, my kid stutters a little) and it seems like a HUGE issue in their lives.

It IS a HUGE issue in their lives.

And their problems, as minuscule as they may be to us asd parents consumes all of their energy and brain power... and you are your situation are the furthest things from their minds...until they see you again... and see what your dealing with... and they think about how stressed they are over stupid stuff... and that's when they say "I don't know how you do it..."

Then they go home and forget all about and go back to their HUGE minuscule problems...

But that's just life.  There's not much we can do about that.

Maybe as autism parents, we do expect way too much from the outside world.   They are bogged down with what they feel are their own HUGE problems... and don't think about autism until they see a news story about autism... or in April when their Facebook newsfeeds get inundated with autism awareness month crap...  :-)  Then they say "how do they do it" and then they move on with their huge problems...

And again... that's just life.  There's not much we can do about that.



And I stand by what I wrote. 

There really is not much we can do about that.  That’s just life.

But for one month a year, and especially on one day a year, we can try to force some awareness down the typical world’s throats.  So they SLOWLY become more & more “aware” of the impending epidemic of autistic kids growing up and leaving the school system, and having nothing to do and nowhere to go. (that’s a whole other blog post for a whole ‘nother day)

Now I know we shouldn’t have to force it down their throats, but we do.  So for one month a year, let’s try to get all the stories out there.  The high functioning stories & the low functioning stories.   The medical stories & the insurance stories.  The political stories.  The poop stories.  The inspirational stories.  The good, the bad, and the ugly.  Let’s get it all out there…and see what sticks and what resonates with the mainstream media and the masses.

That’s all I got.

So Happy Autism Awareness Day!

Now excuse me while I enjoy one of my wife’s delicious blue cookies that I stole from the Tupperware before delivering to my son’s school…

J

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43 comments:

  1. I love this. I couldn't have said it better myself. I hear all the time that Im filling up my friends feed with all this "autism junk" that doesn't matter to anyone, but me. Should it be that way? Ofcourse not, but not much I can do about it. Here's the thing, Im not raising awareness to make you an expert on autism, to make you feel bad for me or my son, for you to even cure autism. I am asking you to be aware so you don't say and do cruel things to my child because you don't understand. I am asking you to be aware enough to make sure your children aren't scared of him or tormenting him when they don't understand what he does. I am asking for you to be kind enough to let us get through one meal, one party, one trip to the park or doctors office without staring, whispering, rude comments, critiquing my parenting and out of control child, giving advice on how to not raise such a bratty child without having to feel like we need to be on the defense and protect our child from you. I had a family member tell me that if I wanted people to not make comments I should make Jaks wear a shirt telling them what his "problem" is. Seriously? Is our world so evil that a child (autistic or not) has to advertise his strengths and weaknesses so that they are not ridiculed by ADULTS! Kindness should be a given, but maybe since it isn't a little awareness for those 1 in 50 families, would be a nice place to start. Thanks for posting Autism Daddy, as usual, I can relate. _Mandy Sims

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    1. This is exactly the point! Autism Awareness is not just telling people what the stats are. It is about what they say and do that can hurt parents and/or the children because they are NOT aware!!! Well said.

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  2. I have to say our family is soooo much like yours, I love reading your posts everyday.
    That being said, I agree 100% with what you wrote above. Until people live the lives we do they will never know what we go through. So why not make them live it for a month *insert evil grin here ;)
    Keep up your superb work.
    And Happy youknowwhatday to you

    Here is a link to my youknowwhatday's blog
    http://artbylana.weebly.com/1/post/2013/04/lets-talk-about-autism.html

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  3. You hit the nail on the head! I love your reading your posts; this one especially. Giant miniscule problems indeed. And they won't ever understand unless they an asd child. -Kelly

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  4. I 100% agree with you !!! I think your wife is awesome for doing this today and I belive your son appricates her going to extra mile today.
    Whatever word we pick .. we need to just not spend our energy in this fight we all have to fight to fight each other.
    Respect is the name of the game :)Have a nice day

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  5. Very well said!! I get that stare of -"I don't know how you do it" all the time. Especially as a single mom my friends are no longer existent because they are dealing with their perfect marriages and typical children. They don't get that I can't reach out to them to "hang out" like I used to. And most have stopped reaching out to me. Their problems are to huge ro take 5 mins and see how me and my problems are. I love your blog and sometimes I would like ro slap people that make comments like the one above. Yeah I know that won't "do any goodness" but it sure as shit would make me feel a little better lol

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    1. Stephanie....what you wrote is exactly what I wanted to write especially about the "friends" part. Thank you for writing what I am feeling as well.

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  6. Great blog today and everyday, always brings a little humor or insight to our family.

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  7. Excellent read ! I couldn't agree more ! If everyone is so aware then why do so many of us go without ? Why do we still have to fight the insurance companies like it's another full time job ? Why is it so hard to get SSI, help with med. bills ? A babysitter once a month so I can go to the grocery store and come home with the right stuff, get my hair cut, sleep !! If everyone is so aware and know all my troubles than why aren't they beating down my door to help ?? Am I expecting too much since they're not "family", it's not their problem, not their kid. I don't want pity, don't want a hand out, but if someone else could just step in and say, hey I may not understand but can I help ? If you see me pushing a cart and trying to hold onto my son , (who is a foot taller then me and looks like he's trying to take flight) struggling with my list, while my cell phone is ringing non-stop, could you hold the door ? Could you move out of the way ? Can you stop staring ? Someone talking to Josh for two seconds, Hi buddy how's it going ? Whatcha drawling? Can occupy him for 5 min and make his day ! Hell I can unload my cart onto belt, clean out my purse and check my e-mails ! People don't understand our way of life, it's all about the kids, schedules, noises, certain places you can go, but only at certain times. Good Days, Bad Days, come around on a bad day if you think everyone is aware ! In fact everyone should be required to spend a week in an Autistic Household, watch Dora 60 times a day while the stereo is on , cause we can't miss classic rock, while he bangs, spins, and yells for no apparent reason, while throwing Popcorn. Where you hear "Stop licking the Dog" and "Don't answer the door without your pants on !" Honey Boo Boo doesn't have shit on us ! lol Should be "Autism Day, Have a Clue" Thanks for all your great posts ! Enjoy your cookies ! :)

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    1. Awesome post Kim especially about the licking the dog and don't answer the door without your pants on. My grandson is famous for standing in the window naked as the passerbys are moving along on their routines. These are awesome, awesome kids!! And families!!

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  8. I think you hit it out of the park with this post! :-) I personally feel Awareness and Acceptance go hand-in-hand. I support everyone's choice to spread Awareness, Acceptance, Action, Celebration, etc.. as they please. I just wish they would use Respect and Kindness when doing it, so the messages received by the masses are not filled with negativity. By the way, the cookies look amazing, and I bet they taste just as good. :-)

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  9. Our 14 year old son, with severe, non-verbal, aggressive autism, moved into a group home almost 2 weeks ago.

    THE FOLLOWING WAS MY FB POST TODAY....

    ====================================================

    REAL AUTISM AWARENESS

    I had a discussion with a co-worker yesterday. I told him I was tired of all the "awareness" campaigns, that the world was "aware" enough and we needed action. He told me...

    No, it's not... The world isn't nearly aware enough of autism. It's not aware at all of families like yours. People don't realize how all encompassing and devastating autism can be on a family. They may be aware that there 'IS' autism, but they are NOT aware of what autism IS.

    It is hard to look at, but it's time the world really becomes AWARE of what autism really IS.... Maybe then, we'll see some action.

    ====================================================

    The world needs to know about families like mine. they need to SEE and HEAR and become AWARE of how autism isn't just 1 in 50 kids... in 1 in 50 families. For us, that 7 people. Not just one kids, with minor social glitches.... 7 people living in survival mode.

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  10. I'm another autism dad and I agree with you. I say it all the time: awareness is not for us, it's for the rest of the general public. We shouldn't assume they understand, know or care so we have to keep repeating it.

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  11. You are so right! Most people still do not really know about autism. I was just in San Diego vacationing with my autistic son. He was happily eating lunch and making some strange noises. It was an outside restaurant with tons of people. People kept staring and giving looks. I finally couldn't take it anymore and yelled out, he's autistic!

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  12. I totally agree with your view A.D. Before my son was diagnosed higher functioning ASD last year I had a very stereotypical view about autism (yes, I will always be ashamed of that), the diagnosis was a huge wake up call for me.
    Due to my exs idiotic behaviour his family saw our son a grand total of 3 times in the first 3 yrs of his life (he's now 4), now the autism social issues have fully kicked in it is now extremely difficult for them to have any relationship with him. I have told them until i'm blue in the face about how we have to cope with his obstacles yet despite everything I say they are still completely clueless and expect him to be some 'normal' child who is absolutely dying to meet them again !!

    We ARE aware because we live and breath Autism every minute of every day, its too easy for others to live like ostriches until Autism takes over their lives too.
    I say ram it down their throats ;)

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  13. Here, here! Very well said!

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  14. I wish I wasn't a little bit bitter today myself. Trying not to bring everybody down but I don't like this month. It gets me stressed out. all the stories most of them upbeat, how surfing helps autism, pet ducks for autism. It gets old.

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  15. I worked at a store that would raise money and awareness for Autism. 8 years ago I would ask customers if they wanted to donate $1 to autism research. I heard a lot of "what is that?" The past few years I heard more "oh my neighbor has that" or my nephew, grandson and so on has that." It seems to me people are only more aware because the diagnosis rate went up. I would love to see PSA's on melt downs and what people should do (and maybe not do!)

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  16. My FB status today: "Today is World Autism Awareness Day. Autism is mean, ugly, and nasty. I hate the way autism affects my son and our family. You are now aware. You're welcome." Of course, you say the same thing in more eloquent terms. I appreciate all the awareness and the blue and all that. But autism sucks. I hate it. Making the world more aware doesn't change my everyday battles. But as you said, that's life. I think the world needs more awareness. I just wish I didn't have to be made aware as often.

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  17. Fantastic post! I love it. When people quote the 1 in 50 number that includes all the Aspergers and HFA as well. (Don't get me wrong, there are struggles involved with those diagnosis too!!!!) But the struggles of a family with a non-verbal, occasionally violent eloper with OCD is a bit more extreme. And yes, I still get funny looks when I take mine out in public!

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    1. I had to reply to this as a mother of a 'HFA', why should my son and others like him but with an Autism diagnosis not be included in those statistics ?
      He is non-verbal, has violent outbursts, cant go shopping for a pint of milk without someone telling me 'a good spanking will cure that behaviour'. He's 'labelled' as ASD because our country has decided to use the term 'ASD' instead of 'Autism/Autistic' so ALL children needing support get it.
      I am not saying your child is less easier or more harder than mine to deal with but one of the points of Autism Awareness is to educate people and most people DO NOT know that it is a spectrum disorder and affects children and their families differently.....the saying goes ' once you've seen a kid with autism, you've only seen one kid with autism'.

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  18. I see acceptance in a different light, but then, for me it is more about personal feelings and not about reaching the global community. I have made my friends and family as aware as they are going to be. Now I need for them to accept truths. My son is not going to be any less autistic no matter how many "instant cure" remedies they tell me about. He is not going to "grow out of it." He is not "the result of better diagnostic tools." I need them to move on and accept and love him for who he is instead of wishing he was someone else.

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  19. That person sounds angry, and autism makes me mad sometimes, too. I hope she has a better day tomorrow. :)

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  20. That is wonderfully said. And it is true. The outside world is unaware of Autism. Both my children A-Typical. But I knew of Autism before because I like to be aware (I hate being ignorant). So, when my nephew was first diagnosed I had a foundation to build on. But there are so many people who have actually asked me "What is Autism?". And I have to explain to them what it is. The rest of the world is unaware of what does not pertain to them. It's not that they don't care, they just don't know. Autism Awareness Month and Day help bring the rest of the world a bit closer to understanding how common it is, or how it affects families, how it affects those diagnosed, and it shows there are treatments, but no cures. Before my nephew, I knew of it, but had never really witnessed it. I had never known any of the "unknown" symptoms or how it was treated. I knew a little bit about it but nothing in depth. And that is what the Awareness Day and Month are for. The ignorant world. I use the definition "Unaware, unlearned" for the world ignorant. People who don't know.

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  21. Thank you for this post...pass the cookies please!

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  22. Since when has awareness been a bad thing? I was completely ignorant that there even was an Autism Awareness Day or month until.... you guessed it, my daughter was diagnosed ASD. The little bit I even knew about autism was garbage! I wish I had been more aware, and used today to try and enlighten others on Facebook, and over at my blog. I would have gone out and spread the word, but alas it was a meltdown and sensory problem sort of day!

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  23. Comments like that person's makes me wonder: Why is it that autism families are the only ones that show a dividing line? Families with Down Syndrome, Cancer, Diabetes, etc do not go up in arms as Autism Families do. I just don't understand. I'm living with a child with severe nonverbal autism and every year I am shocked at the debating/bickering that shows up on my newsfeed. Not from typical parents who are tired of my obsessive posting about life with my son, but autism parents fighting over who they support, what today "really" means and why the other parent is wrong.

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  24. The person that wrote that will "NEVER" be aware of the affect of Autism, they will never understand that your wife taking the time to bake cookies and enjoying something that she wanted to do at the time, made her feel good "for her", Kyle and the class. Most of the world will never understand unless they live in our shoes everyday, its sad but I've come to that conclusion. The majority of our Family doesn't even know what my son is diagnosed (PDD-NOS) why?? Because I want them to not look as his diagnose but at "HIM" he is different, he stands out from the crowd, we get the stares, we get the meltdowns but other days we look like a typical Family, on those days I day a deep breathe because I know it will last a very short minute, maybe hour but then our reality is back. Not one person understands that those "blue cookies" can be our sanity for the day, our release our "feel good at the moment" . . . yes, cookie baking can do it for us, it doesn't take much, we take nothing for granted. I had my son later in life, I was around for all my nieces and nephews growing up and there is no one around to help us. We live in our Autism bubble and all I worry about is what or where my son will fit into the world when he gets older, I've cried my eyes out with figuring out who will take care of him when he is older and what his future holds (we are in our forties and he is 5) but nobody in the world understands unless they live in our Velcro shoes. Funny thing is most people on FB don't even know my son's diagnosis either and I've been posting a lot of the "blue autism awareness" posts and I have received maybe one or two "likes" if any but you post a stupid joke or stupid post and you get a 100. No, the world is not aware they sit back and if their child is typical, they race by that "blue picture" and say "Oh thank God that's not my child" . . . Love you Autism Daddy, Autism Mommy Rock Star, Kyle and Paula you all our part of our Family :)

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  25. I was one of the grandparents that was totally unaware. And sure now I know a lot more almost 6 years later than I did then but it most definately needs to be put out there. People have no idea what the children and the familys go thru. I went to grandparents day with my non-verbal grandson whom is almost 6 on Friday and had the time of my life. I was so impressed with the work they do and the progress they have made so far. I had an awesome time. Yes I wore my blue today and I was proud! Keep spreading the word! And keep up the good work AD!

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  26. hear hear, once again, spot on AD!

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  27. its hard to have Autism in your family. I have family telling me his spoiled, baby crier........ n even the few ppl that say they might know what that means don't. I broke down a wk ago cuz my cries a lot since birth n his almost 5 n non-varble I went to school for signing to tech him more but he can only sign so much. I would love family not just be aware if Autism but to learn it spend a day with a family that lives with it day in n day out. no will understand what I've done for my son to get where his at today I have high hope for him n ill do my best do what I can for him I love u bill bill

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  28. Good post. I agree most people miss the entire point of Autism Awareness Day, which is to make the general public more aware and knowledgeable of the disorder. Even though increasing numbers of diagnoses should increase awareness, negative, narrow stereotypes of autism still permeate society. In my experiences, I've seen medical professionals, whom should be more knowledgeable than the average person, allow stereotypes to cloud their perceptions. When medical professionals are not well-informed, then that speaks volumes to the need for increased awareness of autism.

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  29. We all live in our own bubbles. My daughter with autism was just diagnosed with type 2 diabetes. It's a pretty big problem, but while I was aware of it, I didn't know what it was.

    It's the same for people who don't live with autism - they can be aware of it, but why should they care until they have to deal with it?

    It would be great to get more understanding from the general population - but I believe that until you live with it in your life, it's hard to understand it or be very compassionate about it.
    http://www.specialneedskidstalkradio.com/is-pdd-nos-the-same-as-autism/

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  30. Mary Jo MalczewskiApril 2, 2014 at 9:09 AM

    Very well said. We have other awareness days, so why not Autism Awareness Day or month. When my son was diagnosed in 1998, it was not really heard of. I am glad there is a month completely devoted to Autism Awareness and we can share our stories and our experiences so that the parents that are just starting to learn of this diagnosis have somewhere to turn.l

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  31. I am a mom of two NT kids but am aware as I'm a nurse who worked in a office with kids on the spectrum and have a nephew with autism. So I had the opportunity to speak with parents daily and witness their struggles. I am apalled anyone would say that??? We have breast cancer days and months, teacher day and even nurses day!!!! This is something most people don't think about unless they're faced with it! Love your posts and people who don't or have nothing nice to say should move on!!!

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  32. As a parent of a typical kid, I will admit I was pretty clueless about the real issues that you talk about in your blog. I have friends with kids who have said they're all over the spectrum, and what they said to be severe, really just seems to be middle ground after reading your story and others' on here. I think the general population is about as clueless as I was, so any amount of awareness is definitely needed, though the truly severe cases should be focused on more if the world is to ever "get" it. Thank you for opening your world to people like me, and all of us It has been a very educational experience and, as tens of thousands of people have said, you are a true inspiration for all that you do as father, husband, educator, and hero. Keep it up, the world needs more people like you!

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  33. I wish I had said it this way. I seem to just alienate people. This time I used the food angle. I don't like to paste links without another bloggers permission, but if you'd like to check it out, check out the page DebsFood on Facebook. I love your page and your blog. Its so very important what you say. HAPPY AUTISM AWARENESS DAY! My kids went to school wearing blue - because my therapist reminded me yesterday!!!

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  34. Thank you thank you thank you.

    You and I live on very different houses here on autism street...oh, big surprise, but this THIS is what we need more of!!!

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