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

Tag Archive: decision

Apr 02 2013

Should #Autism be cured?

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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/

May 10 2012

#Autism: Saying goodbye to a family pet

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We made the decision to find Toothless,  Emmett’s and Elliott’s bearded dragon,  a new home. While this decision was a difficult one,  it was the right thing to do.

Toothless wasn’t getting the attention he deserved or needed for that matter. 

We will remember him fondly and wish him the very best. He went to a really cool,  private pet store.  They have all kinds or really cool animals and will live in the store with several other bearded dragons. 

I gave them everything we had for him so he still has his tank and everything else he was used to.

The boys have mixed feelings about it.  Elliott has spent the last day,  trying not to cry,  as he put it. I explained that sometimes when we love someone or something,  we have to do what’s best for them,  even if it makes us sad.

That’s seems to be going for now.  Hopefully,  we will just continue to move forward with little or no fallout.

Goodbye Toothless,  we’ll miss you and we know you’ll love your awesome new home.

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**Thanks for reading**

       -Lost and Tired

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Permanent link to this article: http://lostandtired.com/2012/05/10/autism-saying-goodbye-to-a-family-pet/

Dec 10 2011

Meltdowns are back on the menu

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I’m writing this post and feeling quite overwhelmed and frustrated.  Gavin is back to having meltdowns each day again.

We had experienced a lull in number of meltdowns he has had in recent months. 

However,  that period of peace and relative tranquility has come to an end.  Gavin is back to having meltdowns over anything that doesn’t go his way and I’ll be real honest with you here,  it’s driving me crazy.

We had at least two meltdowns today alone.  I don’t remember what the first one was about,  but the second one involved a decision he made causing Emmett to get hurt. 

He starts out by bending his fingers back to the point of almost breaking them.  Then he slams his foot to the side so he’s standing on his ankles,  if that makes sense.  This is followed by him teasing up the rest of his body and then comes the screaming.

This afternoons meltdown sent Elliott into a panic and flying down the stairs.

I’ve come to the point that I accept the fact that Gavin is going to have these meltdowns and very likely self-injure. Sadly,  I have grown callous to that as it has happened way to many times and he tries to use the self-injury as a means of manipulation.

What I do have an issue with and this is what frustrates…no possess me off.  Gavin doesn’t seem to recognize,  let alone care about the impact his actions have on the rest of the family. 

When he melts down and causes one of the other boys to either get hurt or become terrified by his actions,  it gets under my skin.

I have become a bit complacent in recent months because we haven’t had these issues.  As a result,  I have let things go for fear of the meltdown that may ensue if I address the problem in that manner in which it warrants.

Does that make sense?  Do you ever base a disciplinary decision on whether or not you can deal with the fallout that will undoubtedly happen after a consequence has been dealt?

I have and I can admit that. 

Sometimes it simply comes down to survival. Sometimes the right thing and the wrong thing seem to pale in comparison to literally surviving the moment. 

It’s not always the best thing to base a decision on but the already fine line between good and less than good decision making in special needs parenting can sometimes become less important than physically living to fight another day.

We typically call it,  picking our battles.

As far as Gavin’s meltdowns are concerned,  we have to decide of correcting a negative behavior is worth the 45 minutes we will have to endure that meltdown that will more likely than not follow.

This isn’t an easy decision because there are both long term and short term things to consider,  as well as the affects those decisions will have in the rest of the family.

Nothing about this is easy,  but than again,  if it were easy,  anyone could do this job…right?

This has been posted to WordPress via Galaxy S2 Epic Touch 4G by Samsung, without the use of proper editing tools.

Permanent link to this article: http://lostandtired.com/2011/12/10/meltdowns-are-back-on-the-menu/

Nov 26 2011

New Goals and New Outlook

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I’m making a conscious decision to try and be more positive in 2012. I won’t be fluffy or fake but I also want to spend more time on the little victories.
I will always be realistic about things as I truly believe that is the very best approach to Autism Awareness.  I just want to celebrate my children’s accomplishments more publicly going forward.  I want people to take comfort and know that they are not alone in the struggle and heartbreak that can go along with Autism.  I want people to understand that it’s okay to feel overwhelmed and even resentful at times.  I think I have done pretty well so far with that.

However,  while it’s important people not feel alone,  it’s equally, and arguably even more important to provide hope to those who need it. My goal is to show and share how my kids triumph and overcome obstacles. While I realize that everyone is different and all experiences are relative,  I’m hoping that our story can provide those that find themselves Lost and Tired at some point with hope that things can improve. 

I also realize that my family is sort of extreme,  at least in the sense that we have three boys on the spectrum and a host of other major health issues,  as well as one parent chronically ill. 

I want people to see that despite all we have on our plate,  we never give up.  I know that not everyone will be able to see things this way and I completely understand.  That doesn’t mean, that someone won’t benefit from reading our story and maybe even learning from our mistakes.

Anyway,  I’m getting called away now by three overtimulated and currently screaming boys.  I just wanted to share this..  :-)

Permanent link to this article: http://lostandtired.com/2011/11/26/new-goals-and-new-outlook/

Nov 15 2011

Scary thoughts

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Gavin told me something yesterday,  that had gotten kinda lost in light of all the running around we had to do.
While on the way home from school and on the way to therapy,  he informed me that he’s having scary thoughts at school now. 

What does scary thoughts mean?  That’s a very good question.  Honestly,  no one really knows for sure.  However,  the common assertion amongst all the specialists is that scary thoughts is Gavin’s way of describing hallucinations.

Gavin,  while extremely intelligent,  lacks the ability to articulate much of what he experiences.  Scary thoughts is the best way he can describe what he’s experiencing.

The problem with not knowing for sure what he means is just that,  not knowing for sure what he means. 

It’s so difficult when you are dealing with a child as complex as Gavin because their just isn’t alot we know with absolute certainty. Despite Gavin’s best attempts to explain what he’s experiencing,  he just can’t do so in a manner the really helps to clarify anything.  The only thing we know for sure,  is that he is experiencing something that is very upsetting to him. 

As his father,  it’s frustrating and heartbreaking,  to not be able to know for sure what is going on.  We do know that the medications are helping.  However,  when he tells us about the scary thoughts we are left to wonder whether of not his meds are still working.

We have to then,  meet with the doctors and based on what we do know,  make a decision as to how to address this situation,  if at all. 

We get torn between wanting to provide him relief and not wanting to further medicate him. 
This is never easy….

– Lost and Tired

Posted by WordPress for Android via Samsungs Epic Touch 4G (provided to me at no charge by Sprint) without the use of proper editing tools and disadvantages of a bastardized version of auto-correct. So please forgive the spelling ;-)

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Permanent link to this article: http://lostandtired.com/2011/11/15/scary-thoughts/

Nov 06 2011

Crack…Crack. Do you hear that?

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If you listen carefully, you can hear the ever growing sound of me…..cracking. I’m so far beyond overwhelmed, I don’t have another word to describe it. Gavin is driving me up a wall. Right now he is not making many good choices. He’s struggling with everything and pushing me over the edge as he does it.

In all fairness to Gavin, this isn’t his fault. However, he’s not listening and he has lost all ability to use common sense.  Gavin has never really been able to exercise common sense. I don’t know it he’s struggling more in this area or if I’m just so tired that it seems worse. All I know is that Gavin’s behavior is changing and becoming more and more infantile. Part of me wishing he was just being defiant or purposefully disruptive. I can already see the confusion after saying that. Let me explain.

If Gavin were just being defiant or purposefully disruptive, than I feel I would be more justified in my feelings of frustration and honestly, even resentment. However, as it stands, Gavin has little, if any control of these behaviors. Once upon a time, I believe he did have control over these behaviors, but not anymore. Currently, Gavin is regressing and so his abilities are following suite.

So, when I feel angry or frustrated I also feel guilty. I feel guilty because none of this is Gavin’s fault and yet, I hold him responsible…at least to some degree.

If Gavin was in control, then I wouldn’t feel so guilty because he would be making the willful decision to be this way and therefore be subject to the burden of responsibility for those decisions.

Since that isn’t the case here, at least anymore, this struggle will continue. Gavin will continue to drive me crazy and I’ll continue to feel guilty for being angry, frustrated and resentful.

Sigh

Permanent link to this article: http://lostandtired.com/2011/11/06/crack-crack-do-you-hear-that/

Nov 01 2011

Frustrated Much?

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I’m absolutely frustrated with Gavin.  I’m very aware that majority of my frustrations revolve around behaviors that are outside of Gavin’s control.

However,  just because they aren’t his fault doesn’t mean they aren’t frustrating and exhausting. I’m making the conscious decision to be honest about this because if I’m not,  it won’t do me or anyone else,  any good. 

I don’t want to hide my feelings because that would be denying the truth.  I think that my best bet for long term survival is to purge from time to time, in order to help offset the level of stress I’m constantly under.

As I already said, Gavin is driving me crazy.  He’s not listening and repeating the same inappropriate behavior,  over and over again.  I honestly,  don’t even know why I bother wasting my breath at times.  I mean it’s the exact same thing,  each and every time.

I could literally, prerecord my responses and play them back on demand and they would have the same effect as if I said them in real time. 

He is literally like a 5′ tall toddler.I find myself having to correct Gavin for things that Emmett has developmentally surpassed. For example,  Gavin has almost no impulse control,  which is something Emmett is actually making progress on.

Gavin has just regressed so much that I’m honestly,  not even sure where he is anymore. No matter how hard I try,  I can’t not be frustrated. 

For me personally,  it’s much easier to paint everything in a positive light because I’m not really exposing anything and subsequently,  not making myself vulnerable. 

I’m thrilled to share the positive things,  if and when they occur.  However,  I will not portray things as rainbows and puppies when the truth couldn’t farther from it. 

– Lost and Tired

Posted by WordPress for Android via Samsungs Epic Touch 4G (provided to me at no charge by Sprint) without the use of proper editing tools and disadvantages of a bastardized version of auto-correct. So please forgive the spelling ;-)

Please Vote for Lost and Tired (just click the link) and help me spread Autism Awareness. Everyone can Vote once a day :)

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Permanent link to this article: http://lostandtired.com/2011/11/01/frustrated-much-yes/

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