Jun 14 2012
I wanted to share Elliott’s latest Lego creation. It’s actually a hybrid of sorts because he used non-Lego parts as well.
He took a seashell and used his Lego’s to create an ocean crab, as he calls it. I was really impressed with this because it’s extremely creative and he came up with this on his own.
Great job Elliott. 
Permanent link to this article: http://lostandtired.com/2012/06/14/elliotts-lego-creation-hybrid-crab/
Apr 11 2012
Here at Lost and Tired, my goal is to actually help people by presenting them with our real life experience as parents to three boys with #Autism. While our situation may be different from yours, we are all on the same journey. Something else we all have in common is that we all need help and advice from time to time. Personally, I like speaking to people who have actually been there, or are actually going through something similar.
I have found that this type of support helps on many levels.
For starters, talking to other parents is very non-clinical and much more personal. We can relate to each other in a understanding and non-judgmental way. What I find really cool about this is that you can openly speak your mind and not have to explain yourself.
Many of you are likely aware of the support group that I formed on Facebook. It’s the best support group on Facebook because there is no bullying and the community is very active.
Most importantly is that it’s private. This means that unless you are a member, you can’t see anything. This provides privacy and the ability to speak your mind without fear of repercussion.
In the year or so that I have had this group, things have gone very well and we have grown.
It was inevitable that at some point things were going to have to evolve into something bigger. Facebook is no longer sufficient for what I want to provide the community with.
So one of my big plans for the year 2012 was to start an official Community Autism Support forum.
I’m very happy to say, that while many of my other plans have had to take a back burner thanks to recent events (the theft of our family van), the official Community Autism Support forum are up and running.
What does this mean?
Well, in a nutshell, it means the best Community Autism Support forum around, just got better.
This also means that you have an even better place to go and seek help from other parents that have been there. The new Community Autism Support forum are running on the latest version of vBulletin software which means you have tons or freedom to express yourself and your opinions in a much better way. You can embed videos, pictures and completely customize your profile.
If there is something you would like to see, let me know and I will do what I can to address it. I also have a group of moderators that help to enforce the zero tolerance policy on bullying. The Community Autism Support forum is a completely private group and only members can enter the forums. This helps to ensure everyone is free to say what they need to say, without fear of reprisal.
The Join the Community Autism Support forum can be accessed via the browser on your computer.
However, we live in a world that has gone mobile. I understand the need to support mobility and so in an effort to improve the accessibility and usability of the Community Autism Support forum, I have added Tapatalk support. Tapatalk is an app available for your favorite smartphone or tablet that gives you complete access to these forums from anywhere….
From this app you can create new threads and reply to treads as well. You can send and receive private messages as well as receive notifications of updates and new posts. This is a great way to experience the Community Autism Support forum while on the go. Also, the forums can be moderated from the Tapatalk app as well. So if a problem arises, I can address it from wherever I’m at, as can my team of trusted moderators.
This app is available for Android, iPhone/iPad, Blackberry and Chrome
Instructions for using Tapatalk with the Community Autism Support forum :
1) Download and install the app on your preferred device. This app is available for Android, iPhone/iPad, Blackberry and Chrome. You can use the links above to install via your computer. (Price on Android is $2.99, Blackberry is $3.99, iPhone/iPad not sure). There are also free versions, at least for Android that support ads.
2) Run the app on your device and search for “Autism Support”. You should find the forums and my logo.
3) You will be prompted to log in. Use your username and password that you created when you registered for the forums originally.
4) You can then use the forums via your smartphone or tablet.
Please let me know if you have any issues.
I hope this makes things a bit easier for everyone. My goal is to make this as easy and accessible as possible.
******Special Note******
Please take note that you will need to register and reply to the confirmation email before gaining access. This is done to prevent spam and help ensure everyones privacy. If it takes more than a few minutes to get your email contact me and let me know.
Please help spread the word about our amazing support group. We are always looking for new members and everyone is welcome.
So what are you waiting for? Simply click the banner below or click on the Community Autism Support forum page at the top on this site.
So without further ado, please allow me to present you with Community Autism Support forum
Permanent link to this article: http://lostandtired.com/2012/04/11/join-the-community-autism-support-forums/
Jan 28 2012
Here at Lost and Tired, my goal is to actually help people by presenting them with our real life experience with Autism. While our situation may be different from yours, we are all on the same journey. Something else we all have in common is that we all need help and advice from time to time. Personally, I like speaking to people who have actually been there, or are actually going through something similar.
I have found that this type of support helps on many levels.
For starters, talking to other parents is very non-clinical and much more personal. We can relate to each other in a understanding and non-judgmental way. What I find really cool about this is that you can openly speak your mind and not have to explain yourself.
Many of you are likely aware of the support group that I formed on Facebook. It’s the best support group on Facebook because there is no bullying and the community is very active.
Most importantly is that it’s private. This means that unless you are a member, you can’t see anything. This provides privacy and the ability to speak your mind without fear of repercussion.
In the year or so that I have had this group, things have gone very well and we have grown.
It was inevitable that at some point things were going to have to evolve into something bigger. Facebook is constantly changing and I find it frustrating that we are so limited in the ways we can express ourselves.
So one of my big plans for the year 2012 was to start an official Autism Support forum.
I’m very happy to say, that while many of my other plans have had to take a back burner thanks to recent events (the theft of our family van), the official Autism Support forums are up and running.
What does this mean?
Well, in a nutshell, it means the best Autism Support forums around, just got better.
This also means that you have an even better place to go and seek help from other parents that have been there. The new Autism Support forums are running on the latest version of vBulletin software which means you have tons or freedom to express yourself and your opinions in a much better way. You can embed videos, pictures and completely customize your profile.
In the future, I’m looking at adding an Android and iOS app, that will allow you access and post in the forums straight from your smartphone or tablet.
Please take note that you will need to register and reply to the confirmation email before gaining access. This is done to prevent spam and help ensure everyones privacy. If it takes more than a few minutes to get your email contact me and let me know.
Please help spread the word about our amazing support group. We are always looking for new members and everyone is welcome.
So what are you waiting for? Follow the link below or click the Autism Support page at the top on this site.
So without further ado, please allow me to present you with Lost and Tired’s Official Autism Support.
Permanent link to this article: http://lostandtired.com/2012/01/28/need-autism-help-or-advice/
Jan 17 2012
As I’m sure you are aware of, Autism can be very challenging, for both the person touched by it and their family.
But what happens when the person affected by Autism has other health/mental health problems as well?
This is commonly known as a comorbidity.
In the case of the Lost and Tired family, our 3 boys with Autism have other health/mental health issues. Some of these additional challenges are minor in nature, while others are deemed much more serious and tend to interfere with everyday life.
Some of these issues facing the Lost and Tired family are, ADHD, OCD, PICA, Primary Immunodeficiency, PFAPA (a rare fever disorder), Schizoaffective disorder, asthma, anxiety, PTSD and an as of yet, undiagnosed degenerative neurological disorder.
I say the Lost and Tired family is facing these issues as apposed to an individual child because we face these issues as a family and the family as a whole is affected. Does that make sense?
Ironically, one of the most serious health problems, Primary Immunodeficiency, seems to be the least challenging. At this point in time, Gavin simply gets a monthly infusion of donor antibodies to replace or bolster his defective immune system. It’s been a total blessing that he has never had any major or life threatening complications as a result of this disorder,.especially he went 11 years without being diagnosed.
Emmett on the other hand, suffers from a rare fever disorder called, PFAPA. While this isn’t a life threatening condition like Primary Immunodeficiency can be, it interferes with everyday life.
Emmett had surgery last year to help with this condition.
The benefits of the surgery are debatable as he still sufferers for the same condition. However, instead of running a fever of 104°F for 10 days every 3 weeks, he runs a fever of about 100°F almost constantly. Also since the surgery, the cold sores in his mouth that form during a flare up have gotten much, much worse.
Because he’s always bordering a fever, school, therapy and everything is a challenge. We never know when he’s actually sick or just experiencing a flare up. Attendance is a huge problem.
When your Autistic child struggles with things like PICA, you likely face many trips to the emergency room for ingestion of non-food items.
I’ve lost track of the number of trips to the ER we have made for PICA related reasons. The reason we choose to go to the ER is because we can’t rely on Gavin to give us accurate information about what he might have ingested. We have to error on the side of caution and make sure there was nothing toxic or otherwise dangerous in his system.
When your dealing with other, serious mental health issues like, Schizoaffective disorder, Autism can be significantly complicated and here’s why.
When your child suffered from a condition like Schizoaffective disorder, the line between reality and imagination is extremely blurred, if not all together missing. Gavin, when not properly medicated, will experience both audio and visual hallucinations.
They are very disturbing to Gavin and the rest of the family. He sees things are aren’t there, and he has conversations with people that only he can see. During the very worst times we have experienced with Schizoaffective disorder, Gavin would see what he called a “rat face”, climbing on the walls and attacking both him and his little brother’s.
Gavin would try to protect his little brother’s from things that weren’t really there and accidentally injure them. This was one of the most heartbreaking things I have ever experienced.
It’s often times very difficult to tell the difference between an active imagination and hallucinations. This is one of the biggest reasons for limiting his excitement and stimulation. Things like birthday parties and Christmas will send him into a tailspin, further blurring the lines between reality and imagination.
Can you imagine what it must be like for a very sensory sensitive child to have to contend with his two main senses playing tricks on him, as Gavin will say.
All of these things make Autism a real challenge for the Lost and Tired family. Autism can be a challenge to begin with but when you are dealing with comorbidities, the lines between individual disorders becomes so blurred that it becomes next to impossible to know what is what.
Many parents and families are dealing with comorbidities, on top of the Autism. Common comorbidities include things like ADHD and Bipolar disorder. Those are the most common things I heard about from other special needs parents.
My heart goes out to all the families and persons touched by Autism, but especially those dealing with comorbidities. Please know that you aren’t alone……
Posted from WordPress for Android
Permanent link to this article: http://lostandtired.com/2012/01/17/autism-and-comorbidities/
Aug 28 2011
I would like to introduce you all to Acoustic for Autism. I was contacted by Acoustic for Autism’s founder and producer, Louis Gendron. Louis had heard about Android4Autism and he wanted to donate their entire music collection music to my campaign. Louis and I actually spoke on the phone for over an hour the other night and discovered that we have many things in common, including our passion for raising Autism Awareness and helping others in the Autism community.
Louis and I discussed the goals of our respective organizations and shared our experience thus far on our journey to raise our families and reach out to others. I’m going to quote the Acoustic for Autism website because I think they worded what they are all about very well:
The goal of Acoustic for Autism is to increase awareness, acceptance, understanding for those with autism and to help raise funds for non-profit autism organizations focused on making a direct and immediate impact for children with autism and their families.
Why? Because autism is on the rise. Estimates in 2011 are that 1 in every 91 children is diagnosed each year and 1.7 million American families are currently affected by autism. Autism has become the most rapidly growing developmental disability - more common than Down’s syndrome, childhood diabetes, and juvenile cancer combined.
Most children with autism require specialized education and support services for their entire lives. However, an early diagnosis and intensive education can change the course of this childhood disorder. By supporting Acoustic for Autism, you support our beneficiaries who are helping our children with autism reach their fullest potential!
We receive unique, previously unreleased acoustic-based songs donated by musicians and release them digitally. 100% of the proceeds are donated to autism non-profit organizations.
Needless to say I was very excited to have to oppurtunity to provide my Android4Autism families with this amazing music that The Boston Globe calls“magical…a profound listening experience”.
I listened to every single song on the album (several times actually), including all the singles and I have fallen in love with this music. It’s soothing, relaxing and at the risk of sounding corny, actually made me feel good. The track list (not including the singles) contains the following songs:
Every once in a while you hear a song that really speaks to you. I had one of these experiences while listening to Breathe by Analogue Transit. This song puts into words what I feel often times when looking at my life.
Take a listen for yourself to see if it touches you the same way. The whole Acoustic for Autism is filled with songs just as inspirational.
[audio:http://lostandtired.com/wp-content/uploads/2011/08/04-Breathe.mp3|titles=04 Breathe]
I’m amazed by the generosity of Louis and Acoustic for Autism organization. I’m very proud and excited to be working with them to help provide hope to families in the Autism community. Please check out the Acoustic for Autism website and support this great organization.
You can also find them on Facebook and follow them on Twitter.
There is also a great write up by Awe in Autism. You can also read the story behind Acoustic for Autism at Awe in Autism as well.
Thank you Acoustic for Autism for all your support. I look forward to working together to raise Autism Awareness and help provide hope to those that may have lost it. Acoustic for Autism is a permanent addition to my personal playlist. I would encourage all of you to check out this album and help support the Autism community.
Remember that 100% of the proceeds go right back into the community.
You can purchase the CD by clicking on the image below.
Permanent link to this article: http://lostandtired.com/2011/08/28/acoustic-for-autism/
Jul 24 2011
I have been wanting to write this for a while but honestly it seemed to exhausting to do. This has been eating away at me and I need to just get this off my chest and move on. I’m not sure how this will turn out but I want to make a few things very clear as to avoid any misinterpretation. Everyone’s problems are relative and I get that.
I am by NO MEANS trying to belittle anyones personal experience with Autism and its impact in their lives. Now with that said, there are some things I need to say.
I’m the father of 3 Autistic boys. My boys are each in different places on the spectrum (ranging from low functioning to high functioning) so I have very unique experience and perspective that most don’t have.
Gavin and Elliott are our Aspergers kids. Gavin is “functioning” but not “high functioning”. He also has a host of other mental health issues, most notably schizoeffective disorder. Elliott is our middle child and is “very high functioning”. Most people unfamiliar with what Aspergers actually is, would not know that Elliott has any problems but he does. His issues mostly revolve around anxiety. Gavin will most likely never be able to function independently without supervision. Elliott should be quiet successful in life, as he is more enhanced by Autism then hampered. 
Emmett is our youngest and he is Autistic. He is “low functioning” and significantly developmentally delayed. He is pre-verbal meaning he does have a few words but little to no language skills. He was believed to be non-verbal but has picked up a few words so pre-verbal is more accurate. He is violent and aggressive but sweet and beautiful. Emmett is EASILY the MOST DIFFICULT challenge I have ever faced….
My wife and I have been walking this journey for 10 years together so far. I have become an expert (as much as possible) on my children’s disorders….and yes they are disorders. So I do have some knowledge and experience in this area.
There has been a lot of debate over whether or not Autism Awareness is effective. I would argue that currently it’s not effective but not for the reasons people think. Many people will say that society just doesn’t care. While that may be partially true I don’t think that’s the problem.. There is a fracture within the Autism community itself.
We have parent’s with Aspergers kids (like myself) saying things like “Autism does not define my child”. Then we have parents of much lower functioning kids (again like myself) that don’t say much at all because we are just to exhausted, beaten down and demoralized..
Now, I’m going to say this knowing full well how it’s going to sound but I think it needs to be discussed.
Raising a child with Aspergers (again which I’m personally doing) while not without it’s challenges, isn’t even remotely similar to raising a truly non/pre-verbal Autistic child. You have to understand that there is a huge difference.
Again, I can say this as I am personally doing both. I have NO experience in raising a truly non-verbal Autistic child and I can’t even imagine how difficult that is.
This is the problem in my opinion. All we really ever hear are the “fluff” pieces about Aspergers from parents and large organizations. Honestly, they aren’t wrong because many of these kids will grow up to be successful or at least independent and God bless them for that. However, the problem is these examples become the public image for Autism and these parents its voice. It just doesn’t portray Autism in an accurate light and it sends the a less then accurate message.
Truly low functioning Autistic kids and their parents don’t share the same positive experiences or hope for the future. From personal experience I can tell you how demoralizing it is for me to hear people say things like “Autism doesn’t define who my child is” or something similar. The truth is, that maybe for them it doesn’t but walk a mile in my shoes (or anyone else who’s dealing with low functioning Autism) and you’ll likely walk away singing a different tune.
I mean no disrespect by this at all. I just see things from both sides. For my part, I assumed that the experience I gained raising Gavin and Elliott would prepare me for Emmett but I couldn’t have been more wrong… I could not believe how infinitely more difficult it was with Emmett and that’s after 9 years of raising Gavin, who breaks the mold in just about all areas. Honestly, it’s a night and day difference.
How can we as members of the Autism community ever expect the world to understand when we can’t even be on the same page ourselves. We preach to the world that every Autistic child is different and that’s very true. However, these words become empty if we fail to apply them within our own Autism community. As parents we make the mistake of generalizing things much the same way our kids do.
We generalize our experience with Autism and its impact on the family and transpose that across the board. In other words, we assume that other peoples experience mirrors that of our own. That’s a very dangerous and damaging assumption……. If we are making that mistake how can we expect the rest of the world to be any different?
If you are interested in increasing your awareness about autism, consider the numerous behavior analysis graduate programs available online.
Permanent link to this article: http://lostandtired.com/2011/07/24/why-autism-awareness-is-broken/
Mar 29 2011
We heard back from the pediatricians office. Dr. H is not comfortable in this area and wants Gavin seen in Cleveland. However, I don’t think Gavin will handle the 1.5 hours ride so we are diverting to Akron Children’s Hospital. They are calling this in ahead of time so they are expecting us.
The concern is that we don’t know what’s causing the vomiting right now. It’s happening to often to be the flu and Gavin “claims” he has eaten any non food items. Maybe it’s just the flu “again” but we don’t so we don’t take any chances. Please say a prayer that it’s just a bug and not anything else…..
-lost and tired
Permanent link to this article: http://lostandtired.com/2011/03/29/we-are-off-to-akron-childrens-hospital/
Rob Gorski is a husband and father of 3 boys on the Autism Spectrum. Gorski began his writing career in June of 2010 with his multiple award winning blog Lost and Tired: Confessions of an Autism Dad. Recently cited as the 3rd most influential Autism Blogger on the internet by Dr. Oz's Sharecare website, where he is an expert on Autism.
His mission is to create dialogue, spread Autism Awareness, educate the public on how technology can benefit a special needs family and do so in ways that society can relate to and understand.
Gorski advocates for special needs families and those on the Autism Spectrum, both young and old.
Find Me Here