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

Tag Archive: nbsp

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Mar 14 2012

Lost and Tired’s #Autism questions of the day: #7


Lost and Tired’s #Autism Question of the Day: #7

What types of support, if any, do you receive on your journey with #Autism?   


Please join in the discussion and share your feelings and experiences. This can help other readers to have a better idea of what this journey is for you.. :-)


Remember, as always, you can reply to the discussion here in the comments or more privately in the Community Autism Support Forums by following this link:


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Mar 10 2012

#Autism: The guilt of special needs parenting



#Autism: The guilt of special needs parenting

One of the things that I find very difficult to cope with as a special needs parent, is the endless guilt. When I talk about guilt in this post, I know that it’s not a rational feeling but it’s always there and feels just as bad. Raising three boys on the #Autism Spectrum is by no means an easy task. I can’t tell you how many times I reach a point where I don’t believe that I can go on. There is just so much that constantly happens and nothing is ever a simple fix. It’s exhausting to say the absolute least.

While the exhaustion is well, exhausting, it’s not what troubles me the most. 

What troubles me the most is the endless amount of guilt I feel for not doing better. This guilt is present every second of every minute of every hour of every single day. Perhaps that sounds dramatic to some but I assure you it’s the truth, at least my truth. I’m human and I can only deal with so much at a time. I can also only deal with so much, for so long. After awhile, it becomes harder and harder to get up in the morning. It becomes more and more difficult to maintain hope that a better day will come.

People on the outside can’t understand what this is like. It’s not their fault either. It’s like trying to understand what it feels like to be dying of some horrible disease, when you aren’t. That not your fault either. This is just one of those things that you have to experience to understand. When I say that, I don’t mean it as a slam or put down either, it’s just one of those things.

I’m going to share a personal story, in order to help you better understand where this guilt comes from.

My story, my truth

My youngest child with Autism, Emmett, has become more and more difficult to live with. I love Emmett more than I could ever express in words, however, his behaviors, as of late, are just more than what I able to handle and push me closer and closer to the brink of insanity. It’s pretty safe to say that his behaviors affect his brothers and my wife in a similar way, however, in this post I’m speaking only for myself.

Emmett is severely speech and language delayed. This makes communication a constant struggle as well as a constant source of frustration for everyone, especially Emmett.  I can’t imagine what it’s like to be scared, angry, in pain or just hungry and not be able to convey that to those who could provide you with relief from those things. I don’t think frustrating even comes close or does it justice.

Over the past year or so, Emmett has made great strides in this area and is now basically able to carry on very basic, very limited conversations. I have become pretty fluent in Emmett’s means of communication, but it’s not easy. There are some things that he can communicate very well and many, many more that he can’t.

This, in and of itself, would be challenging enough on the very best of days. However, when you add two other boys with Autism to the mix, it becomes a struggle that I honestly can’t begin to describe. Emmett, over the past several months has begun presenting with more and more Autistic traits. He has become a perfectionist to the point of crippling his life. Everything has to be perfect of Emmett simply can’t move forward. Things like, breakfast, lunch and dinner typically involve blood curdling screaming, until we can figure out what he wants. Even when we manage to figure out what he wants, the challenge is often just beginning. We still have to get him to eat. If his food isn’t perfect or he perceives an imperfection….well…Houston, we have a problem.

He has also become very, very aggressive with his brothers, my wife (his mother) and even the dogs. He goes out of his way to cause trouble. Emmett will run upstairs simply to trash the rooms belonging to his brothers. He trashes their beds and empties their drawers.

I can’t figure out what the motive behind these things are. He gets plenty of positive attention, all the time.

His brothers don’t take this well and it sets into motion an unending cycle of chaos and screaming. It is so bad at times that we literally count the minutes to Friday evening, when he can possibly go to his grandparents house for the night. Last night was one of those Fridays that we long for all week.

The unending guilt

This is where the guilt comes in to play it’s nasty little game with me. I actually reach a point where I can’t wait until he’s gone. I so desperately need the screaming, fighting and chaos to stop that I actually look forward to him leaving. Most of the time, he loves going and his grandparents love to spend time with him. However,    there are times that he doesn’t want to go and I send him anyway. I know he’s going to have a good time once he’s  there and the rest of the Lost and Tired family, including myself, needs the break from his behaviors.

I always feel like a monster sending him away. I feel guilty for not having more patience with his behaviors and not having the strength to cope better without requiring him to leave.

I realize that this is an irrational guilt but it’s guilt nonetheless. The simple fact that I enjoy the time basking in a much quieter, more peaceful and less chaotic house, makes me feel even more guilty. I know it doesn’t make sense but at the same time, it does.

When the phone call comes the next morning, to let us know he’s on his way back, I always have mixed feelings. I do miss Emmett while he’s gone. What  I don’t miss however, is his behaviors. Unfortunately, at this point, Emmett and his behaviors are a package deal. In other words, I can’t have one with out the other and that’s where the mixed feelings come into play. I’m excited to see and hug my little Emmett John but at the same time, I know that everything is going to pick right back up where it left off.

It’s only a matter of time before the fighting, screaming and chaos takes hold of the Lost and Tired family once again.

It seems that each and every time this happens, I’m left with less and less, patients and ability to cope. The seconds, minutes, hours and days become much longer. I will reach a point where I even become resentful because of how these behavioral problems negatively affect my family, especially Lizze. The stress, noise and chaos, make what Lizze is already going through, that much worse. It’s not like when everything slows down, she gets better. All of this has an accumulative affect on her health.

The reality is that Emmett’s behaviors are not the only one to blame here. Elliott’s constant anxiety adds a great deal to the mix as does everything that Gavin has going on, which is a lot.  I just choose to focus on one aspect of this for the purposes of this post.

As a father, I can’t tell you just how horrible I feel when I experience the feelings of resentment. I know that I’m only human and that it’s perfectly normal to feel that way, especially when faced with the struggles that I am faced with, every single day of my life. Having said that, I’m not absolved of any guilt. I still feel like a bad father or a failure as a parent when I get to this point.

The reality of the situation

After me writing everything above and after you have finished reading it, we are left with reality. As a special needs father, I prefer to always deal with the reality of a situation. I would rather know what I’m up against than constantly wonder whats around the next corner.

For me, the reality of the special needs parenting situation is that nothing is ever going to be easy.  Life is always going to be a cornucopia of challenges, heartache, setbacks, steps forward and even the occasional victory. I don’t think that I was created with limitless ability, patience or resources needed to better cope. In fact, I know I wasn’t. Despite having a job that often requires superhuman abilities, I only human and therefore can only do so much.

I have found that guilt is going to be an inevitable part of my journey. Whether the guilt is warranted or not, it will more than likely, always be there.

No matter how much I put into this journey, I will always end up a day late and a dollar short. However, it won’t be for lack of trying, that much I can swear to. I have to learn to understand and even embrace my limitations. They aren’t necessarily a sign of weakness or failure. In fact, it’s entirely possible these limitations are in place for a reason. Maybe they help to keep me centered and in check.

Honestly, if these limitations were not there, I would have probably run myself into the ground, far worse than I already have, trying to do and be, everything for my family. These limitations, force me to stop and take care of myself, otherwise I would likely never stop. Perhaps it’s like a checks and balances kinda thing.

Regardless of anything, the guilt still remains, because I love my family and I know they deserve so much more than I can do for them. While I don’t relish the idea of always feeling guilty, it’s going to be one of those crosses I have to bare. Maybe someday, I can find a way to cut myself some slack. However, until then, I just have to keep on keeping on.


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Mar 08 2012

Lost and Tired’s Question of the Day: 03/08/2012


Lost and Tired’s Question of the Day: 03/08/2012


Can you share one good quality that your child with #Autism possesses?   


I like this question because I would love to hear about some of the amazing qualities that our kids on the Autism Spectrum possess. :-)


Remember, as always, you can reply to the discussion here in the comments or more privately in the Community Autism Support Forums by following this link:



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Mar 07 2012

Lost and Tired’s Question on the Day: 03/07/2012


I’m trying something new today. I want to help create a dialog within the community. I want people to feel comfortable expressing their feelings. There are two ways you can do this. If you prefer to respond in a more private manor, please feel free to reply and share your thoughts in the Lost and Tired Community Autism Support Forum’s. Only other members will be able to see and respond to your post.

If you would like to share the answers with the world, simply post your answer in the comments. :-)

Lost and Tired’s Question on the Day: 03/07/2012


I would like to ask you this question:


If you could make the world understand just one thing about Autism, what would it be and why?

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Feb 24 2012

Thank you, Thank You


I wanted to take a moment and say Thank You to everyone out there. I love to read your comments and receive your emails, so please keep them coming. In case you haven’t noticed, I’m behind once again on replying those comments and emails. It’s always my goal to reply to every single comment and email I receive. You took the time to reach out to me and the means so much. I honestly do my best to keep up with the influx of email and comments but sometimes I simply can’t.

Please be patient with me as I work to respond to as many of you as I possibly can.

Thank you for your understanding and support. The entire Lost and Tired family is so grateful for all of you. ;-)


In case anyone feels the need to use it, I have set up a PO BOX and will check it regularly. If you would like to send mail or correspondence in this way, I would love to hear from you. Please address letters in the following manner to ensure proper delivery:

Lost and Tired

P.O. BOX 8272

Canton, Ohio 44711


Thank you all so very much for everything. Please don’t forget to my Community Autism Support Forum, we would love to have you. As always, it’s private, confidential and place free from judgement and bullying. Let me know if you have any trouble with the registration process. :-)




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Feb 17 2012

The Screaming OMG The Screaming


Emmett woke up front his nap and has done nothing but scream.  There is no consoling him.

I was trying to let Lizze sleep because she had to increase her meds that control her tremors so she is really tired.

Having said that,  I had to go wake her up.  I can’t even leave the kids alone long enough to run to the bathroom or brush my teeth. When Emmett is in this darker place,  he is very aggressive,  especially towards Elliott.

I was thinking that today was Saturday but then soon realized that it was only Friday.  That means I have to still deal with Saturday filled with screaming and yelling.

I wish I knew how to help Emmett because right now his demeanor is a huge stressor for everyone in the house.  It makes Lizze’s migraines all that much worse and increases Elliott’s already out of control anxiety.

Gavin seems to be oblivious to everyone and everything around him. So I guess he’s coping OK.

As I’m typing this,  Emmett is screaming at me that I did something to his Monkey Case. He has a Donkey Kong case for his DS and for the record,  I have no idea what he’s all fired up about.

He just keeps yelling “Daddy,  not nice my monkey case”.

I can’t see anything wrong. However,  if a single fiber is out of place,  Emmett will see it and freaking out.  I’ll have to take a closer look.

I need to find a better way to cope with all of this.  My happy place quit on me awhile back.  I keep saying I need to learn how to meditate.   Hummmm, maybe I need to look into that sooner rather later.
Do we have anyone experienced in meditation?  I could use some advice.


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