Build-A-Bear? Build a Foundation.

“If we are to teach real peace in this world, and if we are to carry on a real war against war, we shall have to begin with the children” – Mohandes Ghandi

It has to start somewhere right? Traditionally that has been with the children.

When studies show that nearly half of all autistic teens reporting that they have been the victims of bullying, we have to get the message to kids sooner. Acceptance and tolerance are vital to ending bullying. Those lessons MUST be taught and reinforced at home as well as in the classroom. We must be teaching our kids about the power of love and leading by example EVERY day.

In order to do that, there has to be a dialogue. There has to be an open line of communication. Sometimes that can be a challenge. We don’t always know how to talk to kids on their level and the fear of saying the wrong thing can paralyze us into inaction. What we need is a little confidence and some tools, something to break the ice and open up the give and take required in an important conversation.

Newtown Reflections - Blogging Advent Calendar Day 15

Yesterday's post today. Because well...

I have to be honest. It is the day after the Newtown, CT tragedy and I am still at a loss. I just don’t feel like writing about my life. Not when so many other lives are being changed in unimaginable ways.

One thing I can write about is how the media is handling the shooter’s possible Asperger’s diagnosis. As I watched the coverage on CNN, a shiver went up my spine the moment I heard autism referenced. Within moments I started getting word online that other “infotainment” networks were really focusing on the autism angle.

Autism doesn’t make a person a mass murderer any more than having blue eyes makes you a homicidal maniac.

So instead of writing anything, and since there are people far more eloquent and knowledgeable than I, I thought I would share some statements as well as some posts from friends…

That Awkward Moment When... - 2012 Blogging Advent Calendar Day 11

That awkward moment when a stranger starts talking to your non-conversational autistic child, and waits for a reply.

It happens a lot with us. We will be at Target or the grocery store and inevitably a little old lady will see Bianca and want to compliment her. Bianca is a really pretty little girl… big eyes, long hair and an incredible smile. Her looks betray her more severe autistic traits in the eyes of a stranger. They just see a pretty little girl who is smiley and singing. Her looks also work against her when she is melting down as well because she looks like a 7 year old that has parents that do not know how to control their child.

So what do we do when that moment comes in which the well-intended stranger comes up and asks Bianca her name, or how old she is only to get what they perceive to be the cold shoulder? Added to the mix is the fact that we are Latino. I could pass for a whole myriad of ethnicities, but my wife is pretty clearly Mexican. So then the nice person starts to speak slower and LOUDER. I think it is because they may suspect Bianca doesn’t speak English, but it could also be that they think she is deaf. 

Autism Beatnik - 2012 Blogging Advent Calendar Day 10

Let me set the mood if I may... I would like to take you to the Beat Generation of the 50's and 60's. We are in a dimly lit cafe and I am stepping up to the mic weighing 80 lbs less and with my goatee still completely black.

I strain to look at my note-cards through my dark glasses, bongos between my legs and a steaming hot cup of coffee (in this fantasy I like coffee) next to me. We are in San Francisco and the vibe is right.

I play a riff on my bongos as you, the audience, start snapping your fingers... Jack Kerouac eat your heart out...

TIME for Action - 2012 Blogging Advent Calendar Day 4

Yesterday I was stunned to see that on my friend Luau’s personal Facebook page he posted a link with a few choice words to the following article and headline written by John Cloud (@JohnAshleyCloud)  that appears on TIME’s Health and Family section:

How the Other 87 Live

One of my nephews (grandnephew technically) had a birthday party tonight at one of those bouncy house indoor places today. We didn't feel that it would be wise to take Bianca. Not because the cast on her foot would slow her down any, but because since it does NOT slow her down, it really serves as a dangerous weapon to anybody in her path.

I could just see Bianca jumping like crazy and coming down with her cast on some poor unsuspecting kids face. It would not be pretty.

Nataly's Letter

In the wake of Ann Coulter’s unapologetic use of the “R-word” I wanted to share a beautiful letter written by Bianca’s friend Nataly.

Nataly is one of the helpers in Bianca’s dance class. She is an incredibly happy, warm, loving, fun young lady… who just also happens to have Down Syndrome. If you knew Nataly, you would understand that her disability is the least remarkable thing about her.

Here is what Nataly wrote on the Voces de Familia de Indiana Facebook Page, a page that was just started by a few Latino special needs parents in Indiana. First is the original in Spanish, and then I have it translated in English.

Thank you Nataly for being a great role model for ALL kids. You are an inspiration and our family is lucky to know you.

Simple Words (Guest Blog)

The other night as I was laying in bed my R2D2 message indicator went off telling me I had an email... yes I am that big of a nerd. When I checked the email I found a message from a fellow autism dad, board member and friend who was clearly hurt and angry. His son was upset, his wife was upset and being the caliber of man that Dan is... he was upset as well.

He needed to vent. So as I had done long ago he turned to writing. He let it all out and worked through anger. Then he did the most important part... he shared it.

My One Percenter

I want YOU to make Autism an important issue in the election!

I am going to try and not get too political here. Truth be told, that is a difficult thing to do, because I tend to wear my political leanings on my sleeve.

All this talk about the secretly taped Romney fund-raiser, and his assertion that apparently 47% of the electorate is full of people that are looking for a hand-out and have feelings of self-entitlement got me to thinking.

I don’t know about 47%, but at least around 1% of the population should feel like they are entitled. They should be entitled to the therapy they need without discrimination from health insurance companies. They should be entitled to going to school free from bullying. They should be entitled to every opportunity imaginable to reach their full potential.

A Scarborough Affair

Copyright MSNBC

I feel sick... I am in the middle of writing about the Autism Speaks Leadership Conference, and took a moment to check out a few of my favorite Autism pages to find thAutcast.com speaking of Joe Scarborough of MSNBC associating the horrible events in Colorado with Autism Spectrum Disorder.Please check out the link and watch Mr. Scarborough's comments.

A Real Concern

If you are an autism parent, you have all sorts of information stored in your brain that B.A. (Before Autism) you would have never imagined knowing. You know “1 in 110”. You know about self-funded and fully funded health insurance. You have learned a string of acronyms that made your head spin when you first heard them, but you now rattle off like a maestro conducting Beethoven’s 5^th.

If you have done any investigating into research and funding, I am also certain you have come across, as I did when researching for my “Fixing” Autism video, that more children will be diagnosed this year than with AIDS, diabetes and cancer combined.

This is a pretty startling statistic. But bring that statistic up, and right away proponents of other causes go on the defensive. The most common argument that I have seen used is the following:

“AIDS, diabetes and cancer will KILL you! They are terminal! I have never heard of anybody dying of autism!”

It is usually also preceded or followed by insults.

Autism Awareness/Skyscraper by Demi Lovato (Cover by Nichole337)

For the latest Autism Awareness project, we put together an incredible team of people. I had a chance to team up with the fantastic Nichole337. 

If you do not know who Nichole337 is or her story, please check out:

Known for her music videos, we knew that if we were working together we had to have Nichole sing. We just wanted people to see Nichole in a professional setting while we raised a little awareness. Here is the result.

(See video in larger sizes by clicking on the name of the video in upper left of window while playing)

What an AMAZING experience! It was such an honor to work with Nichole337. She is such a sweet person, you love her the second you meet her. Thank you Nichole for teaching me so much throughout the making of this project and being such an inspiration to so many. You are a hero. Your autism awareness video is teaching a mainstream audience that so desperately needs to be educated about what autism is and about those touched by it.

If you do not know who Nichole337 is or her story, please check out:

The Tragic Case of Stephon Watts

Of the posts I have written, this has been the toughest. I purposefully delayed publishing my thoughts on this subject publicly because it was very difficult for me to write about this story without becoming incredibly angry. My anger is primarily focused on two things. I hoped that with time the anger would subside and I could write without my judgment and opinion being clouded. I do not know that I have been entirely successful, but here it is… the tragic case of Stephon Watts.

Photo from JUSTICE FOR STEPHON WATTS!!! Facebook page.

Dad vs. Man

"Sometimes the poorest man leaves his children the richest inheritance." - Ruth E. Renkel

Being a dad doesn't mean you can’t be a man. When you have a child with special needs, they need their dads to be as involved as possible. Being a dad makes you a BETTER man.

Some men feel that the two are mutually exclusive. Scratch that. Some women feel that way too, so I guess it is some PEOPLE feel that being a dad means you can’t be a man.

Why do I say this? I say this because to me it is almost like there is an opinion out there that a guy has to turn in his “Man Card” in order to be fully vested in their kids. By that I mean that they take part in and are an active participant in ALL of the day to day routines of their kid’s lives that their schedule allows.

It is a disturbing phenomenon that I see firsthand almost every day. In the vast majority of events, therapies and functions that I attend, I am one of the only guys if not the only man in the room. At first I chalked it up to my unusual work schedule; my days off are in the middle of the week which allow me to be really active in Bianca’s week. But I work nights when I do work, so I am able to participate in weekend activities as well… and again, I am in the minority by a LONG shot.

Fixing the Misconception

It is time to answer another question from the old mailbag. This one is BY FAR the most often asked question. I have answered this in various posts and responses, but perhaps it is time I put the answers all in one spot so that I can just reference something for people that are having a hard time connecting the dots or are quick to assume that I am suggesting something that I feel I clearly am not.

Suzi N. asks on my Facebook page:

“Hi,
When you used quotation marks for the word "fix" in your video, what did you mean? I am part of a group - and right now that is the main discussion. To me, and please correct me if I am wrong, it is about making Bianca the best she can be by fixing the system.”

Thanks for asking Suzi! It means a lot of things. Perhaps I can best answer you by saying what it does not mean. It does not mean that I view people with autism (or any disability or disorder) as being broken people in need of fixing.

Scenes from an Italian Restaurant

“Could a greater miracle take place than for us to look through each other's eyes for an instant?”
- Henry David Thoreau

An interesting thing happened to my family today. We decided to get a quick bite to eat before Sofie’s dance class so we stopped off at a pizza buffet. We sat at a high-top table near the buffet which we had never really done with the kids before. It actually worked out pretty well because Bianca didn’t have such an easy time getting up and running around. The only real loser in the deal was Luis because the baby carrier was about a foot below the table.

I went for my first pass at the buffet and to grab a slice of pepperoni for Bianca. Pepperoni is her favorite. Not the pizza… just the pepperoni. She will rip it off and eat them one by one. I have even bought her pepperoni for the house and put it in her salads. They are always the first to go.

Elsa and I got involved in a conversation as Sofie ate nothing but oyster crackers and Bianca polished off the cheese and crust of her now pepperoni-less pizza while rocking left and right in her chair. People passed by with their plates full of salad, pizza, mashed potatoes, hot wings and pierogi as we wolfed down our food trying to make certain that we made dance class in time.

Just then, out of the corner of my eye I saw Bianca reach out and grab something from a lady’s plate as she walked past us from the buffet table. Elsa and I both started to apologize profusely.

When something like this happens, it is incredibly stressful. Anybody with a child that has Autism Spectrum Disorder knows… people can be cruel and display an amazing lack of understanding. Sometimes not intentionally, but to say it happens OFTEN is putting it lightly. Many autistic children appear normal on the outside. When they act up or start to have sensory issues, it is easy for an outsider to dismiss the situation as a parent that can’t control their child or somebody that has a bratty kid.

“I am so sorry.” Elsa said, “Our daughter is Autistic.” We have learned from experience to throw this out there as soon as possible so that people understand the situation at hand.

But unlike anybody else that we have ever encountered, this lady stood there with a smile on her face. She held her plate out to Bianca and asked her what it was that she wanted. Bianca grabbed the tomato and shoved it in her mouth with a smile. Mind you, this is a complete stranger’s child pawing at her plate with their bare, grubby hands… and she smiled.


“Oh it is OK.” Said the lady softly, “My oldest has Asperger’s. He is very high functioning, but has a tendency to say not very nice things at inappropriate times. He is 21 years old now.”

The lady gave Bianca a loving pat on the head and said goodbye.

My heart melted. Elsa was moved to tears. The woman never even threw the plate out, or went back and got another salad. She shared, and she did so willingly and happily. This woman displayed kindness and understanding on a level that is beyond comprehension for most… unless you have been there.

The experience has stuck with me all day. I can’t stop thinking about it. Why did the kind blonde lady with her starter salad react the way she did? It is understandable if she was nice and kind AFTER we told her about our daughter’s condition. But she was warm and loving from the start.

Empathy. It was pure, genuine, real… empathy. It was the ultimate example of having walked a mile in our shoes.

The world needs to discover a whole lot more empathy. It appears to be in short supply. Take a moment today to try to see something from another’s point of view. It can only make you wiser and more understanding. Then maybe someday you will find yourself in a position to shock a stranger with kindness and understanding too.

If you have not already, please take time to watch my videos, "Fixing" Autism and Autism Awareness with Nichole337 and share them with your friends.

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