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

Tag Archive: light

Mar 16 2013

Why I’ve lost faith in #Autism Awareness Month and what I’m doing about it

As Autism Awareness Month creeps closer and closer, I’m going over my goals for the month of April,  as well as, working on few things I’m trying to make happen.

Personally, I think Autism Awareness Month has become way too commercialized and subsequently has lost a lot of its meaning.

As the years go by, I’ve begun to lose faith in Autism Awareness Month altogether.

I’ve shared my opinion of the whole light it up blue campaign. To me, lighting it up blue brings awareness to Autism Speaks and does not necessarily shine the light on Autism, at least in any meaningful way.

I’m not discouraging anyone from screwing in a blue light bulb.  I’m simply asking you this. If April is supposed to be about the people with Autism and helping the world to better understand and accept them, how exactly does advertising Autism Speaks help anyone I  real life?

Think about it, what does the color blue represent anyway? What does it have to do with Autism, accept bring attention to Autism Speaks.

I’m not saying there’s anything necessarily wrong with Autism Speaks. I just wonder why we give them more attention than we do the people actually touched by Autism.  I mean, we should be shining the light on the families that are struggling with Autism, each and every day. 

My belief is that if we help people to better understand what Autism is really like for our children, both young and old alike, we can help them to better relate and understand.

I also believe very, very strongly that we need to stop ignoring the adult Autistic community and acknowledge that they don’t necessarily need anyone to speak for them because they have their own voice.

There is so much we can learn from the adult Autistic community. Not only can they help the world better understand Autism but they have provided invaluable insight into the lives of my kids. I’m so incredibly grateful for that. 

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In my opinion, it’s one thing to advocate for our children when they are too young to do so themselves. It’s another thing entirely to dismiss the voice of an popular of people simply because we think we know better.

Autism Awareness Month has become a giant fundraiser for many organizations and I often question where that money goes and how many people in real life actually benefit.

Perhaps instead of looking at Autism Awareness Month as a means of making money, we could maybe help make it about the people and families that are struggling or need help. I think they could use the help and attention  a lot more than some of the multimillion dollar charities.

This is why I’ve made the very personal decision to sorta do my own thing.  One of my goals is to continue paying it forward in the name of Autism Awareness. 

I’m going going to try and donate more tablets, gift certificates and anything else I can get into the hands of my readers and those that need it.  I don’t make anything off of doing this and any attention this generates goes to further spread Autism Awareness, information and education, throughout the community.

What do you want to see happen this year during Autism Awareness Month? What are your plans?


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Jun 26 2012

#Autism and talking at the speed of light

Something we haven’t had to deal with for awhile is Gavin’s excessive chatter. Gavin goes through these periods of time,  usually when manic,  where he literally talks nonstop. Much of the time he’s either himself or seemingly just stringing words together.

We have hit another one of these cycles recently. Let me tell you,  it really takes a great deal of effort to cope with the incessant talking.

It reaches the point,  as it has today,  where I simply start tuning him out. I don’t do that willfully either,  it’s like a defense mechanism that kicks in after hearing the same friggin thing,  over and over and over again.

Already today,  I have made several requests of God to please not let this be a manic phase. I do think knowhow we would manage to survive Gavin being manic right now.

If you have personal experience with a child that has a bipolar type mental illness,  you likely know what I’m talking about.  If you have not experienced this,  count yourself lucky. It’s exhausting and frustrating and sometimes even dangerous.

Gavin has hit a true manic phase in awhile,  so he’s probably due.  However,  with any luck,  he will hang on until we find a new psychiatrist.

At least we see Dr.  Pattie tonight. 

**Thanks for reading**

       -Lost and Tired

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This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct is working against me.

Permanent link to this article: http://lostandtired.com/2012/06/26/autism-and-talking-at-the-speed-of-light/

Apr 03 2012

What Does #Autism Awareness Month Mean To You?

I have been wondering what #Autism Awareness month means to you? There seems to be a lot of focus on the commercial aspect of this very important month.

I thought I would share with you what Autism Awareness month means to me.

To me,  Autism Awareness month is a time to do much more than just help spread Autism Awareness. It’s a time to come together and put aside our differences for the betterment of all those touched by Autism. 

I like to try and become more Autism aware myself by getting to know my own kids better. That also means I attempt to see things for another perspective and try to bridge the gaps that form throughout the community every other month of the year.

To me,  I can’t expect something from someone that I don’t expect of myself. If I want the public to become more educated about Autism,  I need to further educate myself as well. I need to be open to other ways of thinking that don’t necessarily coincide with my own.

Autism Awareness has to start at home. We as members of the Autism community need to embrace our differences and unite under one cause,  one purpose. 

All to often,  we are divided by what we don’t agree on,  instead of standing together,  side by side,  hand in hand,  helping to build a better future for all those touched by Autism.

I don’t personally care if you light it up blue or not.  I don’t care what your opinion of vaccines are or where your loved one falls on the spectrum.  We are all on the same journey.  We may be taking different paths along the way,  but our destinations are same.
We all want the same thing for our children,  the best future possible. 

In my opinion,  Autism Awareness should be every day of every month,  all year long.  I don’t need a special month to become more Autism aware.  I live it every single day of my life.  I use Autism Awareness month as a time to take inventory,  on a personal level.  I work hard to share my family’s story but I worked harder to learn and share other families stories.  :-)

So what does Autism Awareness month mean to you?

**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/2012/04/03/what-does-autism-awareness-month-mean-to-you/

Mar 14 2012

F*ck you time change

There are few things I dislike more in this world than the time change. I mean,  I personally handle it just fine,  however, my three. Autistic boys don’t

The simple act of moving the clocks ahead by one hour is completely disruptive.  It’s like someone took their world and shook it up like a snow globe. It becomes total chaos for them and subsequently for us as well.

I say this every spring and fall because the time change is like my worst enemy.

I try to bring peace and order to our world and time change seeks to bring confusion and chaos. The confusion and chaos,  typically lasts for a few weeks.  Those few weeks are among the worst of the year.

This may sound dramatic,  but the switch to and from day light savings time is extremely disruptive.  The worst part is that their sleep schedule is thrown off.  This results in very early mornings,  following really late nights. 

When it was decided that this time change would be a good idea,  I assure you,  the creators of this idea didn’t have three Autistic boys. 

As I’m writing this,  Elliott has already been up for well over an hour (4:30 am). Trying to keep him from waking Emmett is not easy and it means that I must remain awake at this most unholy of hours.

This is why,  every single year I climbing to the highest roof of the tallest tower and scream,fuck you time change.

**Thanks for reading**

       -Lost and Tired

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Permanent link to this article: http://lostandtired.com/2012/03/14/fck-you-time-change/

Feb 17 2012

Isn’t #Autism enough?

I have been suspecting that Emmett is about to begin another fever flare. All the screaming and yelling yesterday and today were sure signs. However, this morning it has been confirmed. He has cold sores appearing on his tongue again.

These are small now, maybe about the size of a pea.

However, over the next day or so they will grow into what you see in the picture below.  These will last about 10 days before starting to go away for a few weeks. You can understand why he would be miserable. I’ve talked to so many people that have just never seen anything like it before.

The large red oval is just one giant cold sore

Pictured below, is just one of dozen or so cold sores that develop when these fevers pop up. I can’t even begin to imagine how bad that hurts. To be completely honest, I can’t believe how well he actually handles it. I would be a giant monster if I had to deal with that.

I wish he wasn’t having to deal with this. I think that in light of all Emmett has to contend with, this simply adds insult to injury. I mean the poor kid is allergic to milk, eggs and lactose, which is in just about everything imaginable. He has severe speech and language delays, courtesy of Autism and this rare fever disorder.

Now the poor guy is being looked at for Juvenile Rheumatoid Arthritis.

How much can one child deal with? Trust me, I realize it could be much worse. Every month when I take Gavin to Oncology for his antibody in fusion, I see just how much worse it can be.

While I’m grateful that we don’t have that to deal with, and my heart goes out to kids and their families, my son is in pain. That’s my reality. As his father, it kills me that he has to suffer like this. The struggles we face with Autism alone are often times more than what we can deal with.

At times like this, I have to ask God, isn’t Autism enough?

Permanent link to this article: http://lostandtired.com/2012/02/17/isnt-autism-enough/

Feb 11 2012

#Autism, overload and the sensory diet

My kids are on complete sensory overload. Gavin doesn’t even have a fuse anymore.  He’s like a really old and very unstable stick of dynamite.  Anything and everything can set him off.

When he goes off to the land of the meltdown,  it’s very intense,  loud and terrifying for his little brother’s.

Elliott is still in a manic state from the reaction to his anti-anxiety meds.  He beyond a handful right now.  His mood is swinging back and forth faster then anyone can react to it.  He took about 6 hours to fall asleep last night and that was with melatonin.

Emmett is bullying Gavin and Elliott both.  He is stealing toys, blankets and even kicking people.  He has even been stripping Elliott’s bed and running away with his sheets.

I have no idea what is going on with the kids.  I mean,  I know what’s going on with Elliott but Emmett and Gavin are a mystery. I suspecting they are overstimulated but I’m not sure what is causing it. 

We have been allowing Gavin to help Elliott with the 3DS and maybe that’s what is pushing him over the edge.

I’m also wondering if the weather is contributing to this as well.  We’re in the middle of a winter storm and so with all the snow,  it’s reflecting a great deal of light.  This is making the house very bright and I know that could be a problem.

We have also become pretty lacks with TV time since the van was stolen.  They have been watching a lot of Rug Rats & Phineas and Ferb.

I think that we are in desperate need of an emergency sensory diet.

This will require making some drastic changes.  These changes will involve removing TV and Video Games. We will also have to attempt to slow everything down. 

Perhaps,  some relaxing music, story time and maybe even a board game. 

The whole point would be to significantly reduce,  lights, noise and anxiety.  I need them to be as relaxed as much as possible. Gavin is in need of this the most right now but I think everyone will benefit from it. 

I’ll let you all know how it goes.

We need to cut out as many sources of stimulation as possible.

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Permanent link to this article: http://lostandtired.com/2012/02/11/autism-overload-and-the-sensory-diet/

Feb 07 2012

Sometimes I just need things to stop

I consider myself a relatively patient guy.  I’m far from perfect but I’m pretty patient.

Having said that,  everyone is driving me crazy.  All day I have listened to Elliott whine and Emmett scream.

Gavin is doing pretty well but he is repeating himself all the time and doing everything super fast.  Behavioral wise,  he’s doing well.

Lizze isn’t feeling good.  She battling these horrid migraines and her whole body just hurts.

When you combine all of the above,  it’s a recipe for insanity. My eyes are twitching right now. The boys are about 90% down for the night. Elliott however,  has decided that he has to watch a specific episode of Phineas and Ferb tonight.

Once he finds it,  he’ll be out like a light.

I know it’s to soon to tell,  but the meds haven’t helped Elliott much today. It’s gonna take some time and patience before we will see any progress in that arena.

I think I’ll go drowned myself in the Autism Support Forums tonight.  I enjoy talking with the people there and it has become my new happy place.

Feel free to stop by and introduce yourself and maybe help someone out who’s looking for advice.

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Permanent link to this article: http://lostandtired.com/2012/02/07/sometimes-i-just-need-things-to-stop/

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