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

Tag Archive: future

Jun 12 2012

The Lighter Side of #Autism: Just the 3 of us


Today,  we had a really quiet,  peaceful and memorable moment.  Both of the younger boys wanted to snuggle Daddy at the same time.  Typically,  this can lead to a fight but they did really well and that’s awesome.  These moments are definitely much lighter than many others.  I live for these moments because it reminds me of when they were babies and we didn’t know any of the things we know own now.  It was just peaceful moments, find with hope for the future. 

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Permanent link to this article: http://lostandtired.com/2012/06/12/the-lighter-side-of-autism-just-the-3-of-us/

Mar 23 2012

Motivating myself to workout


I don’t think tired quite describes how feel right now. The last thing I feel like doing it walking.  However,  it’s important that I push myself to go because if I skip now,  it will be easier to skip out later on.

As much as I don’t want to go now,  I’ll feel sooooo much better about myself when I’m done. 

Sometimes I have to remember that I’m not just doing this for me.  I’m doing this for my future as well as my kids future.  They need me to be around for a really long time. If I don’t get and keep myself healthy,  I won’t be able to do that.

**Thanks for reading**

       -Lost and Tired

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Posted from WordPress for Android so please forgive any typos as auto-correct and I don’t see eye to eye. :-)

Permanent link to this article: http://lostandtired.com/2012/03/23/motivating-myself-to-workout/

Mar 14 2012

I found my new happy place


Here in Ohio,  the temperature been in the 70′s for the past few days and for the foreseeable future.

I’m outside with the puppy throughout the day and so I started doing yard work. I’m really enjoying the quite time outside, even if it’s just a few minutes at a time.

Since we lost our van and had to replace it,  we will be stuck in this house for the immediate future.  I fully intend to make the best out of a bad situation and make things as pleasant and normal-ish as possible.

Hopefully,  I’ll be able to enlist some of my family and we can get the yard in good enough shape for the boys to play outside.

I’m also hoping to get a fresh coat of paint on the kitchen walls and most of the second floor,  including our bedroom. Hopefully,  this will help me to make lemonade out of the crap load of lemons life has dealt us.  :-)

**Thanks for reading**

       -Lost and Tired

Please join our Community Autism Support Forum

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Posted from WordPress for Android

Permanent link to this article: http://lostandtired.com/2012/03/14/i-found-my-new-happy-place/

Feb 19 2012

United we stand Divided we fall


We have all heard the phrase united we stand, divided we fall. How many of us apply that lesson to our daily lives?

I’ll be the first to admit that I fail at this sometimes. At times, I feel it’s better to go my own way because I don’t agree with how or why someone else is doing something, even if we both have the same goal.. There are even times that I disagree so strongly that I simply don’t want to be associated with them.

Having said that, I fully intend on changing that part of me. While I honestly don’t take that approach very often, I still do at times and that’s enough of a reason for me to address this within myself.

This leads me to the point of this post.  

I have spoken about this many times but I feel it’s important enough to revisit. I know that not everyone will agree with this but to each their own. While I don’t have Autism myself, all of my children do. If that’s not a good enough reason to be a vocal advocate then I don’t know what is. I can’t pretend to know what it’s like to have Autism but I do know what my kids go through and I know what adults with Autism have shared with me.

With that said, perhaps it’s best to begin this with a question.

Why is there so much division in the Autism community?

As I find myself more and more involved with people, families and others touched by Autism all across the world, there is very common thread linking us all together.  We are all concerned, worried and focused on or about our children’s future. We all want the very best life has to offer for them. We know the challenges they are going to face, especially as they get older.

Life with Autism is a journey and while we all seem to have similar or even the same destination, we sometimes seem to drift apart along the way.

Let me try and explain what I mean.

I know that no matter how carefully I word any of this, I will inevitably offend someone. If that does indeed happen, I truly apologize as that is not my intent. I have these thoughts in my head and I want to share them with all of you. Here goes nothing :-)

For as long as I’ve been involved in the Autism community, I have noticed there seems to be a rift. I know I’m not the only one that sees this because I hear from people all the time with the very same concerns and or experiences I have had. Maybe rift is the wrong word to choose. Perhaps I should say that the Autism Community seems fragmented.

I actually like the word fragmented more. I think it’s a more accurate.

Over the years I have seen this fragmentation on more than one occasion. If you want proof, just look at the vaccine debate. I’m not even sure debate is the right word to use.

Like many communities, the Autism Community is full of different people from different backgrounds. It would stand to reason that these different people could hold different beliefs and have experienced Autism in different ways. Some people are dealing with the challenges associated with raising a child with Aspergers and yet others are struggling with a child on the lower end of the Autism Spectrum. While those people may each face unique challenges and some of those challenges may overlap, they are still vastly different experiences.

Some people believe that vaccines are responsible for Autism, while others don’t. Some people don’t like or support a particular Autism charity while others do. There is the debate over acceptance vs a cure. There is even tension between parents of kids in different places on the spectrum. One of the bigger things going on lately, especially in the social media world, is bullying.

I have even recently seen disputes arise when some adults with Autism are offended that people like myself, for example, advocate for our children when we are not diagnosed with Autism ourselves.

Do I have proof of this? Well for starters, it’s my personal experience and so I don’t really feel like I need to prove anything. However, if you doubt what I’m saying, you should take a closer look around -Google is your friend- you’ll eventually come across what many others, including myself have already experienced.

Just as an example, I can’t tell you how many times I have personally been attached for vaccinating my children. I have even had Facebook Friend Requests declined simply because I have “Liked” the Autism Speaks fan page or I have someone in my Friends List that they don’t like or agree with. I get messages explaining this as the reason for the declined Friend Request. Really?

I get emails every single day from people, literally all across the globe, sharing their experiences with me. You can read the various comments on my blog or other popular blogs out there and you’ll come across more people that have shared a similar experience.

This isn’t about creating drama or passing judgements.

This, for me, is about asking the question, why is it, that instead of embracing our differences and working together, we all to often allow these differences to fragment us?

I mean, I’m pretty sure we all want the same thing. We all want what’s best for our kids. We all want our children to have the very best future possible.

Instead of focusing so much on the why’s or differences, perhaps we should focus more on the how’s. Instead of fighting over why our children have Autism, what about focusing on how can we work together to educate the world about our kids? So much precious, irreplaceable time is wasted allowing our differences to fragment us. Wouldn’t that time be better spent figuring out how can we help our kids to be ready for what life has in store for them?

In my opinion, my boys are already Autistic, at this point does it really matter what caused it? To me the answer is a resounding no.

I know it’s important to isolate the cause but science will one day give us the answers to at least some of those questions. Right now, in this very moment, so many children, families and adults are already living/struggling with or touched by Autism. At this point, I personally, don’t much care what caused it, I care more about helping my kids navigate their world.

This journey we are all on can be very challenging, not only for our kids but for our family as a whole. What we do now and the choices we are currently making can have a profound impact on this journey. I guess the real question is, what kind of impact will your decisions make on this journey?

Our kids won’t be kids forever. What about when they are all grown up? Will the decisions you make today help to make life any less challenging or forgiving for those touched by Autism down the road?

For those of you wondering why I’m so passionate about this please read My Broken Heart:The Story of The Bare-Handed Man.  If you have any questions after reading that, I don’t really know what else to say.

Remember, United We Stand, Divided We Fall. 

Permanent link to this article: http://lostandtired.com/2012/02/19/united-we-stand-divided-we-fall/

Feb 05 2012

Autism Society and Autistic Self Advocacy Network Issue Joint Statement on DSM-5


The Autism Society and Autistic Self Advocacy Network speak out on the changes coming to the DSM-5 as it pertains to Autism.

I would love to hear your thoughts on this :-)

The Joint Statement of the Autism Society and Autistic Self Advocacy Network on the DSM-5 and Autism

As two national organizations committed to working to empower the autism and Autistic communities today and into the future, the Autism Society of America and the Autistic Self Advocacy Network issue the following joint statement regarding the definition of Autism Spectrum Disorder within the DSM-5.

The autism spectrum is broad and diverse, including individuals with a wide range of functional needs, strengths and challenges. The DSM-5′s criteria for the new, unified autism spectrum disorder diagnosis must be able to reflect that diversity and range of experience.

Over the course of the last 60 years, the definition of autism has evolved and expanded to reflect growing scientific and societal understanding of the condition. That expansion has resulted in improved societal understanding of the experiences of individuals on the autism spectrum and their family members. It has also led to the development of innovative service-provision, treatment and support strategies whose continued existence is imperative to improving the life experiences of individuals and families. As the DSM-5′s final release approaches and the autism and Autistic communities prepare for a unified diagnosis of ASD encompassing the broad range of different autism experiences, it is important for us to keep a few basic priorities in mind.

One of the key principles of the medical profession has always been, “First, do no harm.” As such, it is essential that the DSM-5′s criteria are structured in such a way as to ensure that those who have or would have qualified for a diagnosis under the DSM-IV maintain access to an ASD diagnosis. Contrary to assertions that ASD is over diagnosed, evidence suggests that the opposite is the case – namely, that racial and ethnic minorities, women and girls, adults and individuals from rural and low-income communities face challenges in accessing diagnosis, even where they clearly fit criteria under the DSM-IV. Furthermore, additional effort is needed to ensure that the criteria for ASD in the DSM-5 are culturally competent and accessible to under-represented groups. Addressing the needs of marginalized communities has been a consistent problem with the  DSM-IV.

Individuals receive a diagnosis for a wide variety of reasons. Evidence from research and practice supports the idea that enhancing access to diagnosis can result in substantial improvements in quality of life and more competent forms of service-provision and mental health treatment. This is particularly true for individuals receiving diagnosis later in life, who may have managed to discover coping strategies and other adaptive mechanisms which serve to mask traits of ASD prior to a diagnosis. Frequently, individuals who are diagnosed in adolescence or adulthood report that receiving a diagnosis results in improvements in the provision of existing services and mental health treatment, a conceptual framework that helps explain past experiences, greater self-understanding and informal support as well as an awareness of additional, previously unknown service options.

Some have criticized the idea of maintaining the existing, broad autism spectrum, stating that doing so takes limited resources away from those most in need. We contend that this is a misleading argument – no publicly funded resource is accessible to autistic adults and children solely on the basis of a diagnosis. Furthermore, while the fact that an individual has a diagnosis of autism spectrum disorder does not in and of itself provide access to any type of service-provision or funding, a diagnosis can be a useful contributing factor in assisting those who meet other functional eligibility criteria in accessing necessary supports, reasonable accommodations and legal protections. As such, we encourage the DSM-5 Neurodevelopmental Disorders Working Group to interpret the definition of autism spectrum disorder broadly, so as to ensure that all of those who can benefit from an ASD diagnosis have the ability to do so.

The Autism Society and Autistic Self Advocacy Network encourage other organizations and groups to join with us in forming a national coalition aimed at working on issues related to definition of the autism spectrum within the DSM-5. Community engagement and representation within the DSM-5 process itself is a critical component of ensuring accurate, scientific and research-validated diagnostic criteria. Furthermore, our community must work both before and after the finalization of the DSM-5 to conduct effective outreach and training on how to appropriately identify and diagnose all those on the autism spectrum, regardless of age, background or status in other under-represented groups.

Scott Badesch
President
Autism Society
sbadesch@autism-society.org

Ari Ne’eman
President
Autistic Self Advocacy Network
aneeman@autisticadvocacy.org

P.S. The Autism Society will continue to share its thoughts and feelings about keeping the community inclusive as more information about the revisions is known.  In the meantime, we strongly encourage people to get involved in the discussion.

Permanent link to this article: http://lostandtired.com/2012/02/05/autism-society-and-autistic-self-advocacy-network-issue-joint-statement-on-dsm-5/

Jan 28 2012

Need Autism Help or Advice?


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 13 2012

OMG it’s quiet


It’s 10pm on a Friday night, the kids are in bed and sleeping.  The house is actually completely quiet.

Lizze and I are actually able to chill out on the couch and just relax. 

She’s working on her netbook and I writing about….well…this.  King of the Hill is on Netflix and a cup of tea and a pretzel are in the near future.

I hope your night is quiet and peaceful.

What a great way to bring in the 3 day weekend.

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Permanent link to this article: http://lostandtired.com/2012/01/13/omg-its-quiet/

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