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

Tag Archive: answer

Apr 02 2013

Should #Autism be cured?


I answered my very first question as an expert, on Dr. Oz’s Sharecare website. For the record, I’m so incredibly honored to be recognized in this fashion for my work in the Autism Community and I hope that this new opportunity allows me to reach out to even more people.

The question that was asked was Should Autism be cured?

First off all, this is a loaded question. Answering it is akin to playing Russian Roulette. No matter how you answer, there’s a bullet in every chamber that has your name written all over it.

With that in mind, I wanted to share my answer and get your thoughts on the subject of  whether or not we should cure Autism.

 

Should Autism be cured?

This is a really tough question to answer. As a father to 3 boys in various places on the Autism spectrum, I’ve asked myself this question many times.

Autism is a profoundly dynamic disorder, meaning that each and every person with Autism is unique, with a different set of skill sets as well as challenges. Some people are more profoundly impacted by Autism and face a great many challenges and are perhaps, unable to even speak.

Others on the Autism spectrum will face fewer challenges in life.

When it comes to a cure for Autism, the first thing that comes to mind is no.

In my opinion, I don’t see how you could possibly remove something from someone that is so tightly woven into the very fabric of their being. How could you remove the Autism, without removing a huge part of who they are?

Should Autism be cured?

I think the simple answer to this very complicated question is that I don’t think we have the right to make that decision for anyone. Most of my Autistic friends would in fact be insulted by this question because it infers that there is something wrong with them to begin with. I don’t think I could bring myself to make this type of decision for my kids. The risk of losing who they are would be far too great.

I would think that if a cure were available, it would have to be up to the individual person. It’s their life, therefore their decision to make.

As a special needs parent, it breaks my heart to watch my kids struggle at times. Having said that, they always seem to overcome their obstacles. They’re happy and enjoying life. If I were pressed to make decision, I would not “cure” them of what makes them…..them.

 

If you interested in reading what my other colleagues had to say on the subject, you can hop over to the Sharecare website and read their responses here.

I would encourage you to join the Sharecare website. It’s basically Facebook for health care. Here’s a bit more about it:

Sharecare is a health and wellness social media platform that connects people with top-ranking experts ranging from doctors and specialists to hospitals, healthcare companies and health-conscious consumers. The power behind the site’s unique Q&A format is its collective wisdom, providing health-seeking consumers with answers reflecting multiple expert perspectives—greatly simplifying the search for quality information.

Created by Jeff Arnold and Dr. Mehmet Oz in partnership with Harpo Studios, Sony Pictures Television and Discovery Communications, Sharecare allows people to ask, learn and act upon questions of health and wellness, creating an active community where knowledge is shared and put into practice — simply said, sharing care.

Launched in 2010, Sharecare is based in Atlanta, Georgia.

 

 

 

Permanent link to this article: http://lostandtired.com/2013/04/02/should-autism-be-cured/

Jun 04 2012

Can zero tolerance leads to paranoia?


I’ve been talking a lot about our reinstated,  zero tolerance policy for touching. This policy applies to Gavin only because he is touching people in inappropriate ways. We have tried to work him through this and explain the issues,  however,  Gavin simply does it over and over again,  anyway. 

Regardless of his intentions,  we had to institute the zero tolerance policy,  in order to not only protect the rest of the world from Gavin but also protect Gavin from his own behaviors.

As Gavin gets older and these behaviors continue,  he will find himself in very serious trouble.

We have worked very closely with his therapist to create this zero tolerance policy and the consequences for violating it as well.

As one might expect,  this is not am easy task to enforce.  In fact,  it’s frustrating and exhausting.  This is especially the case when Gavin constantly tests the boundaries. In the span of 15 minutes yesterday,  he touched Elliott 3 times.  While these touches weren’t in a sexual manner,  he’s not supposed to be touching period….

We are forced to cracked the whip,  so to speak or risk losing control over the situation.

Not only is this difficult to enforce,  but it has had an unintended affect on Elliott and Emmett as well. There is almost a sense of paranoia in the air. Elliott is constantly coming to me and saying that either he accidentally touched Emmett or Emmett has touched him. This is despite our best efforts to explain to Elliott that this rule doesn’t apply to him or Emmett. 

Our efforts are in vain,  because nothing seems to help them understand this.

So because Gavin can’t keep his hands to himself,  we have had to institute a zero tolerance policy for touching.  Now,  because we have the policy in place,  Emmett and especially Elliott,  have become almost paranoid of physical contact with each other.

In special needs parenting, many times,  there is no such thing as a clear cut, right or wrong answer. Many times the solution to one problem can create another problem.  This is one of those times.

Permanent link to this article: http://lostandtired.com/2012/06/04/can-zero-tolerance-leads-to-paranoia/

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?

Permanent link to this article: http://lostandtired.com/2012/03/07/lost-and-tireds-question-on-the-day-03072012/

Feb 17 2012

Do you ever feel this way?


I think I know the answer to this but I’m gonna ask the question anyway.

Do you ever get to the point with all that special needs parenting entails,  that you feel like you’re going to lose your mind?
I mean honestly,  with all the screaming,  overstimulation and meltdowns,  do you ever feel like you’re going to just lose it?

I sure as hell do,  especially on days like today.

I think that it’s pretty normal to feel this way. I also think it’s important to share these feeling so that you and everyone else that is experiencing these feelings,  know that they aren’t alone. 

**Thanks for reading**

       -Lost and Tired

Please join our Community Autism Support Forum

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Permanent link to this article: http://lostandtired.com/2012/02/17/do-you-ever-feel-this-way/

Jan 16 2012

The road of life


Sometimes it’s easy to get swept up by the raging tides and forget about just how beautiful the ocean can be. The same thing cannot be said about Autism.

In my own personal situation with the Lost and Tired family,  I find myself failing to see the beauty behind the challenge.

It’s so easy for me to get overwhelmed by all the challenges we face,  day in and day out.  Honestly,  the weight or responsibility and be absolutely crushing at times.

So many times,  I’m asked how I manage.

I never really know what to say to that question. In truth,  I really don’t know.

However,  after thinking about this for some time,  I have come to have a better understanding of how and why I keep going.

While the challenges facing the Lost and Tired family may be different than yours,  the driving force behind behind our seemingly never ending strength is, I think, the same as many of yours.

As a parent to 3 special needs boys,  I never imagined the challenges I would face while traveling the road of life with my family. 

This road has many twists and turns as well as blind corners.  These blind corners are some of the toughest to cope with because many times all you have if faith that you’ll safely navigate your family through.

It’s true that all three of my boys are in the Autism Spectrum.  It’s true that some of our boys are dealing with other health issues,  some minor,  while others are more serious. It’s also true that we struggle with behavioral issues just about every single day. 

It seems like we are always,  either going to or coming from an appointment or therapy session.

It’s exhausting,  overwhelming and demoralizing at times.

With all that said,  there is something else you need to know a out my boys. Despite the challenges associated with raising them,  they never cease to amaze me.

My boys are intelligent, loving,  compassionate, creative, generous, courageous, brave, courteous, inventive, genuine, inspiring and most importantly,  well worth the effort that goes into helping them to navigate the road of life. 

I think that’s why I keep going.

As to the how,  I really don’t have a solid answer for that.  I just think that when it comes to my children, I will cross raging ocean waters and climb the highest of mountains for them.  I’ll fight anyone or anything that gets in their way. 

My wife taught me,  that no matter what the odds,  you never give up.  She is the glue that holds the Lost and Tired family together much of the time.

I’m not really that different than anyone else. 

I get overwhelmed, beaten down,  demoralized and sometimes even want to give up. Lost and Tired is a way to basically sum up how I feel much of the time.

As special needs parents,  I think we’re all hero’s, maybe not the conventional type.  However, when the rest of the world would have given up,  we keep pushing forward and never give up on our precious little angels. We are absolutely hero’s to our children.

I think it’s very important that we never lose sight of that.

Just because I choose to write about my adventures doesn’t make me any more amazing than you.

My hat’s off to all of you…..

Cheers.

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Permanent link to this article: http://lostandtired.com/2012/01/16/the-road-of-life/

Jan 05 2012

Interesting Dilemma


Emmett has been up since 3am this morning in pain. He has hit yet another flare up -I think I mentioned this yesterday- and his mouth is filled with cold sores. He gasbag very large one on the side of his tongue, about .5″ long.

All morning he cried and we could do little to console him.

Grandpa even stopped by -which typically excites Emmett- but Emmett would even accept a hug from him.

He did do better after his nap and was really well behaved during the interview this afternoon. Believe it or not, he actually wore clothes as well. I’m so proud of him.

I was explaining to the reporter that this is a rarity in our house. Emmett almost never wears clothes. That’s a pretty big victory. Awesome job Emmett.

Back to the point of this post.

We will be back to the immunologist in the morning. In a way, this flare up is well timed because she will get to see how bad it is.

This is where the dilemma cones into play.

We spoke with the immunologist at Akron Children’s Hospital yesterday or the day before. Apparently there is a medication that can stop or reduce the Marshall Syndrome flare ups.

The problem is that they don’t like to use it unless it’s absolutely necessary.  That is likely why we are just now hearing about it.

We will get the details in the morning but the impression is that there is risk involved in doing this.

We may find ourselves in a position where we have to decide to do something that has potential risks in order to reduce Emmett’s pain.

How do you decide something like that?

Gavin is on a very dangerous medication called Clozapine. We were in a similar boat with him but under much different circumstances. We had tried everything else first and the life Gavin had before the medication was no a life.

In Emmett’s situation, things are different. We are talking about physical health and not mental health.

Tomorrow is just a follow up and we are supposed to discuss this option, whatever it is.

I wish there was a cut and dry, right or wrong answer. However, this seems to be par for the course……at least for us.

Never a dull moment……

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Permanent link to this article: http://lostandtired.com/2012/01/05/interesting-dilemma/

Jan 01 2012

The actions of one can impact another


Tonight we had another Gavin incident.  He was watching TV with Elliott.  They were watching a cartoon and for some reason,  Gavin started chewing on his mattress. 

You heard that right.  Chewing on his freaking mattress. I mean really?

Anyway,  after watching Gavin for a bit,  Elliott,  thinking it was funny decided to imitate his big brother.

Elliott came downstairs and told me what happened. Then he burst into tears because he so embarrassed that he had imitated Gavin. He kept saying “I can’t believe did that”.

He just sobbed and sobbed.  I did all I could to comfort him. 

Elliott wanted to confront Gavin about how it made him feel to imitate what he saw him doing.
I thought that was really mature of Elliott to want to do that.  I also thought it would benefit,  at least in theory, Gavin by showing him how his actions can affect others.

I then made the mistake of asking Gavin why he would chew on his mattress. 

They say,  “never ask a question you don’t want the answer to”.  They are right,  because when Gavin told me he did it because he saw a cartoon character do something similar,  I realized we are going to have to reevaluate Gavin and Netflix.

Now,  Elliott is curled up on the couch,  peacefully sleeping.  I guess we’re camping out again.

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Permanent link to this article: http://lostandtired.com/2012/01/01/the-actions-of-one-can-impact-another/

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