Autism, Aspergers, Rob Gorski,Special Needs Parenting, Reactive Attachment Disorder, Fibromyalgia,

Tag Archive: “Autism Speaks”

Mar 16 2013

Why I’ve lost faith in #Autism Awareness Month and what I’m doing about it


As Autism Awareness Month creeps closer and closer, I’m going over my goals for the month of April,  as well as, working on few things I’m trying to make happen.

Personally, I think Autism Awareness Month has become way too commercialized and subsequently has lost a lot of its meaning.

As the years go by, I’ve begun to lose faith in Autism Awareness Month altogether.

I’ve shared my opinion of the whole light it up blue campaign. To me, lighting it up blue brings awareness to Autism Speaks and does not necessarily shine the light on Autism, at least in any meaningful way.

I’m not discouraging anyone from screwing in a blue light bulb.  I’m simply asking you this. If April is supposed to be about the people with Autism and helping the world to better understand and accept them, how exactly does advertising Autism Speaks help anyone I  real life?

Think about it, what does the color blue represent anyway? What does it have to do with Autism, accept bring attention to Autism Speaks.

I’m not saying there’s anything necessarily wrong with Autism Speaks. I just wonder why we give them more attention than we do the people actually touched by Autism.  I mean, we should be shining the light on the families that are struggling with Autism, each and every day. 

My belief is that if we help people to better understand what Autism is really like for our children, both young and old alike, we can help them to better relate and understand.

I also believe very, very strongly that we need to stop ignoring the adult Autistic community and acknowledge that they don’t necessarily need anyone to speak for them because they have their own voice.

There is so much we can learn from the adult Autistic community. Not only can they help the world better understand Autism but they have provided invaluable insight into the lives of my kids. I’m so incredibly grateful for that. 


In my opinion, it’s one thing to advocate for our children when they are too young to do so themselves. It’s another thing entirely to dismiss the voice of an popular of people simply because we think we know better.

Autism Awareness Month has become a giant fundraiser for many organizations and I often question where that money goes and how many people in real life actually benefit.

Perhaps instead of looking at Autism Awareness Month as a means of making money, we could maybe help make it about the people and families that are struggling or need help. I think they could use the help and attention  a lot more than some of the multimillion dollar charities.

This is why I’ve made the very personal decision to sorta do my own thing.  One of my goals is to continue paying it forward in the name of Autism Awareness. 

I’m going going to try and donate more tablets, gift certificates and anything else I can get into the hands of my readers and those that need it.  I don’t make anything off of doing this and any attention this generates goes to further spread Autism Awareness, information and education, throughout the community.

What do you want to see happen this year during Autism Awareness Month? What are your plans?

This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-)

Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-)

For more ways to help the Lost and Tired family, please visit Help the Lost and Tired Family.

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Feb 04 2013

Does “Lighting it up blue” really help anyone touched by #Autism?


Disclaimer: I’m adding this disclaimer because there is always going to be someone that takes a post like this the wrong way.

I’m not saying the Autism Speaks or by extension, Light it up blue, is a bad thing. I just feel like it’s more about the organization and less about the people they are supposed to be helping.

Again, I’m not saying that’s the case. I’m simply sharing my thoughts and opinions. These are my opinions based on my current knowledge and understanding. I remain open minded, regardless of my opinions. I would ask you to do the same.

Why would I of all people, question the purpose of the light it up blue campaign?

I can already see the hate mail flowing in after this but here’s the deal. In my opinion, and it’s just my opinion, lighting it up blue is less about #Autism awareness and more about Autism Speaks.

Maybe that’s not a bad thing. I just can’t help but wonder if doing so really helps those with autism and their families. Again, just my opinion.


I truly believe that if we want true, effective autism awareness, we need to each play our parts by sharing how autism has impacted either ourselves or a loved one. Share how it impacts your family in both positive and negative ways. The truth is, nothing in life is ever 100% positive or 100% negative. Autism is no exception.
If you want people to understand that autism is truly a spectrum disorder/condition, we have to show people how profoundly it varies from person to person. We also need the voices of many and not just one organization. I also believe that the autistic people of the world have their own voice, regardless of the form it comes in. We really need to listen to what they have to say, instead of speaking for them.

Over the last 2 or 3 years, I’ve made so many autistic friends. I’ve learned more about autism from them, than any other source, including autism organizations like Autism Speaks. I discovered that they are a fantastic resource, especially for parents raising kids with autism themselves.

Let me say this again, just so we’re crystal clear. I’m not saying that you shouldn’t light it up blue. All I’m wondering is, when we light it up blue, what are we really doing?

Are we creating attention for Autism Speaks or autism awareness because those are two very things. As for me, I will continue to spread autism awareness the way I have been. I’m going to continue to share my family’s autism experience and encourage others to do the same. I will also continue to push for real life families to get real life help.

Autism Awareness is a great thing but there is a huge need for our Autism families to get real, life changing help. There are so many of us out there struggling each and every day. Therapies, medications and even technology that can be used to help an autistic child or adult navigate their world is so often unattainable for monetary reasons.

There is a real need for people in the trenches and boots on the ground. We need real life help for real life families and right now, the resources just aren’t there. I’m just one person and yet I’m able to partner with companies that are willing to provide much needed technology to the families that need it. I can provide a place for parents and autistic people alike, to get support from others in similar situations.

Perhaps you don’t have the connections to do some of those things but Please don’t underestimate the value and importance of your voice and experience. I think it’s great that everyone can unite behind Lighting it up blue, I just wonder if it’s really what we think it is.

I welcome your thoughts and opinions on this. I’m open to your personal insight and would love to have a dialog.
Please let me know if you have trouble with leaving a comment buy usig the Contact Me page. :-)



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Dec 31 2012

My Broken Heart


Please check out the follow up post to My Broken Heart. It’s a look back over the past year since this whole thing took place. See: Life After My Broken Heart

To my readers:

The story in the below post happened to me on February 22, 2011. This event has forever changed my life. Please help me share it. This is why we desperately need Autism Awareness. Thank you for reading and helping me share my story…


My broken heart: The Story of The Bare-Handed Man

It’s been a few days since I have spoken with all of you. Something happened to me a few days ago that I have been struggling to deal with it. I hope you all truly hear what I’m about to share with you. I want everyone to read this and know what happened. Not because of what I did but because of what I learned… Please share this story and help spread awareness.

A few days ago I went to Giant Eagle to pick up some groceries. We had a winter storm on the way and I needed to pick up a few things in case we got snowed in again. I pulled into the parking lot and found a spot right in front of the entrance. My back is out again so I can’t walk very far. As I was pulling into the spot I had to wait for some people to move out the way. They were just standing in the parking spot. Their car was in the next spot over but they just stood there and shot me a few dirty looks,  like “who was I to expect them to move”. I just waited, it wasn’t a big deal. I wasn’t even upset. They eventually started to get into their car and moved out of the way so I could pull in.

The snow had already started to fall and we were getting about 1″ per hour. I sat there a second collecting what I needed to take into the store. I just happened to look over at the people that were still getting into their car and I saw a large black man standing there. I didn’t see where he came from but in one minute he wasn’t there and the next minute he was.  Then I realized what he was doing. He was wiping the snow and ice off their windshield with his bare hands. The woman looked at him, like, “how dare you touch my car”.
She was clearly disgusted just breathing the same air. Instead of asking him to stop or giving him a few dollars she tried to run him down. She gunned the car forward so fast that her friend who was trying to get into the back seat had the back passenger door slammed on him and he was left standing in the snow. The man who had been trying to clean the windshield was knocked back. This woman just kept shouting things to the man with the bare hands.


I was in shock. I had never seen anything like that before and I never want to again. A few seconds later the man gets up and walks over to me and knocks on my window. I hadn’t even begun to process what I had just seen. Now he was coming over to me and I had no idea what I was going to say. Shamefully, I was thinking “please not now, I just want to get what I need and get home”. Where I live it’s not uncommon for people to approach you for money. So I knew what was probably about to happen. I took a deep breath and started to open the door. The bare handed man opened it the rest of the way, being careful not to hit the car next to me.

The bare handed man was under dressed for the weather and obviously cold. He asked me for change. I gave him everything I had, $2.37. He started talking to me but couldn’t look me in the eye. As he was telling me how cold and hungry he was, I watched as he was unable to control his hands. It was like he was playing an invisible piano. He had a very hard time talking to me and I could see he was much more uncomfortable then I was. He clearly had boundary issues but I never felt threatened in any way. He kept staring off and would occasionally look in my direction but never at me and I never saw his eyes. He stood about 1 or 2 feet in front of me and asked me to drive him to a shelter because it’s “warm there and they have food”.  He informed me that he was “homeless and very hungry”. He then told me that he “was not lying to me”. He said “if I lie to you then you might not help me”. He asked me to buy him some food and gloves. I thought about what to say. I knew he would have hard time understanding. I don’t have any money. My family is struggling to survive each day. I would literally be taking away from what little my family has and I just couldn’t. I was trying to figure out how to explain to him that I couldn’t help him. I was lost for words.

Then something happened that shook me to the core and completely broke my heart. As I was trying to form the words I needed to tell him “no”, he looked me in the eyes. All of the sudden I was looking at Gavin. Gavin is the oldest of our three special needs boys (all Autistic). Gavin is 11 years old and is also diagnosed with schizoaffective disorder as well. Looking at the bare handed man was looking through some special window at my son Gavin, 20 or 30 years from now. It was a kick in gut. I was overcome with emotion. It was like I was run over by a freight train. I can’t put words together to really describe what that moment was like.

He again asked me to buy him food because he was hungry and gloves because his hands were cold. Something about him was so familiar and yet I’d never met him before. I looked at him and told him I would buy him some food. He smiled in my direction and took my hand (without looking at me) and led me into the store. He didn’t fit in with the rest of the people in there. His clothes were old, beat up and didn’t smell very good. He had clearly been through a great deal in his life and it showed in his face. I noticed the looks people gave me as I walked with the bare handed man into the grocery store. He asked me to buy him a gift card so he could buy food later on when he is hungry again. So we walked over to the rack and he picked out a Giant Eagle gift card. He asked for other ones but I just couldn’t. We went to the register to ring it up and I explained how to use it. I put $25 on the gift card and the cashier asked if I wanted any cash back. I had them give me $25 cash back. I gave it to the bare handed man and asked him to please buy himself some gloves and a bus ride to the shelter. The last thing he asked was to have the receipt so “when the police stop me, I can prove I didn’t steal this”.

He told me again that he wasn’t lying. I told him I knew he wasn’t. He turned to walk away and he stopped and looked in my direction as to say “Thank You” but didn’t. What he did said more than a simple thank you. He showed me his eyes again for a brief moment before he turned around and left. I stood there completely heartbroken as I watched my son Gavin walking away into the cold.  I was beside myself with grief. How could someone I didn’t know have such a profound effect on me?

I just couldn’t shake just how much the bare handed man reminded me of Gavin. I tried to finish the shopping I had to do but I couldn’t remember anything I was supposed to get. I walked up and down the aisles on “autopilot” doing everything I could not to burst into tears. I got to the end of the store and realized I still had an empty cart. All I could think was “how does that happen”. I was smacked in the face with reality. Someday I won’t be here to take care of my kids. What if this happens to them? What if they are the ones wiping off a windshield with their bare hands and almost getting run over by someone who clearly doesn’t care.

I screwed up grocery shopping. I just couldn’t focus on anything. I got what I could remember with what little I had left and drove home.  I was completely lost at that point. I just couldn’t process what had just happened. All I could think about was not allowing this to happen to my kids in the future. The horrifying truth is that someday I won’t be here for my kids and I pray they are never in that same situation. I truly hope that if they are, someone will show them kindness and compassion. These are my babies and I get sick to my stomach thinking about what their future holds.

I got home and unloaded the groceries and was in the kitchen with Lizze. I wasn’t going to say anything to her about it but I had to because we already were struggling and now things were going to be even tighter and she deserved to know why. I looked her in the eyes and told her what had happened. I just sobbed and sobbed on the floor in my kitchen. I couldn’t control myself or keep my emotions in check. That has only ever happened to me when I watched Lizze give birth to our kids. The past few days have been rough because I just can’t seem to get past this. All I can think about is my kids and their future. My heart has been broken and I live with the reality that this could be one or more of my kids in the future.

This has been very difficult for me to write. I’m still very emotional. Most parents will never know this fear but I do. Parents of special needs kids live with this indescribable fear each and every day. I wanted to share this story because we CANNOT allow this to happen to our kids. Please help me spread Autism Awareness. I don’t care what it takes but the world needs to be better. These people NEED compassion and understanding. My kids need your compassion and understanding… Please give them that much, I beg you….


I also published this article on CNN Health Check it out by clicking the CNN

logo. I rewrote the article so that more people, especially those unfamiliar with special needs parenting could relate. The article collected 37,000+ “Likes” and counting.


Please check out the follow up post to My Broken Heart. It’s a look back over the past year since this whole thing took place. See: Life After My Broken Heart


If you liked this piece, you might also like: 10 Things My Autistic Kids Wish You Knew or Thank You For Judging Me

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Nov 05 2012

Get #Autism help or advice while on the go


As many of you know, I launched a support forum earlier this year. There were hundreds of members and tons of interesting conversations going on.

The Autism Help Forums weren’t for Autism related things only. This forum supports the entire special needs community.

Unfortunately, I lost the database and I had to rebuild the forums, from scratch. This means that I am rebuilding the community and need your help. 

However, out of the ashes of what was, has emerged something better.

I have recently relaunched the Autism Help Forums, with updated software and better Facebook integration.

Visit the Autism Help Forums, sign up and and introduce yourself. I realize that it can be tough to start the conversation but we need to break the ice sometime.

However, I’m most excited to announce the release of a brand new, vastly improved Autism Help app. Unfortunately, at the moment, this app is only available on Android.

However, if you’re using an Apple product, look in the app store for “Tapatalk“. You can also visit their site to find out if your device is supported.

These two apps are essentially the same. The difference being that the Autism Help app is customized for the Autism Help Forums and the standard Tapatalk app is not.

Both apps are free.

These apps will allow you to register, use and participate in the forums while on your mobile device. This is great if you have something come up and you need to vent or ask a question.

The Autism Help Forums are not meant to replace professional medical advice. However, sometimes it’s nice to get feedback and advice from people who actually live in the trenches and have been in your shoes.

That’s what the Autism Help Forums are for.  

You can visit the forums by visiting or by clicking the banner below.

 To grab the Autism Help app for Android based devices, please click on the logo below or search the Google Play store for “Autism Help” on your wireless device. 

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Sep 28 2012

Kids say the cutest things


I was taking video of Emmett eating yogurt. Sounds like a weird thing to film but this is the first time he’s been allowed to eat it because until now, he’s had significant food allergies to milk, lactose, soy and egg.

He was really excited to get to eat what his big brothers eat, since he is now officially allergy free.

I didn’t realize that Emmett was going to say something really cute at the times but I’m glad I was able to capture it.

I was thinking that we could share some of the really cute things our kids have said.


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Mar 22 2012

Another day, another trip to the doctors


Lizze and Emmett are on their way to the pediatrician’s office to get Emmett checked out. He isn’t getting any better and we think he may have strep throat now as well. Whatever he has, has spread to the other boys and that makes three special needs kids, all sick at one time, under the same roof, with a father about to lose his marbles.

Hopefully, he will be able to get some relief and antibiotics, if needed.

Again, having multiple special needs kids, all sick at the same time, should break some kind of law. I’m not sure why it’s allowed to happen but if I was in charge for just one day, I would make it a rule that special needs families should only ever have to deal with one sick, special needs child at a time. I think a great deal of us would benefit from a law like this. Maybe I should run for whatever office would put me in a position to make executive decisions like that.

I’ll look into it and get back to you :-)



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Mar 21 2012

Time to join me and get Fit4Autism


I came up with the idea of “Fit4Autism“ last year. It’s kind of a play on word’s. However, it’s way more then that. As special needs parents we need to be able to take care of our children for as long as possible. The unfortunate truth is that many of us dedicate so much time and energy to our children that we fail to take care of ourselves.

Fit4Autism“ is a challenge I’ve issued to myself and now to you. That challenge is to start doing things to improve your overall health and fitness. Simple things like eating healthier and becoming more physically active. Parking farther away from the store (when possible) or simply walking. As a father to 3 special needs kids (all Autistic) I know how difficult it is to make the time to do this but honestly we can’t afford not to. Who will be their for our kids if we aren’t. We owe it to them as well as ourselves to be as happy and healthy as possible for as long as possible.

If you would like to join “Fit4Autism“ send and email to [email protected]

I’ll get an invite off to you right away. Everything is tracked via My hope is that I get as many people to join as possible. There’s motivation and encouragement in numbers. Endomondo works no matter where you are in the world. The more we have the more attention we can get and the more Autism awareness we can spread. Anyone wanting to support the cause is welcomed to join. We owe our kids healthy parents and this is what I’m doing to make sure my kids have that. Join “Fit4Autism” today and improve your health while increasing Autism Awareness.

My Daily Workout

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