Sep 12 2012
Can anyone tell me what so significant about this picture? Winner gets bragging rights. 
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Sep 09 2012
All day today, Gavin has been constantly telling me what he’s thinking. I mean that literally. For example, he says something like this, dad, I’m thinking about going up the stairs to go to the bathroom. Then I’ll come back down the stairs.
This is just one small example of that he’s currently doing. He used to don’t his before and it would drive me crazy.
It’s like every two seconds he’s telling me something else that he’s thinking about. I’m always up to hearing what my kids think but this is straight up exhausting.
He also repeats himself as well. He’ll tell me something, and then a few minutes later, he tells me the same thing again..
I haven’t seen this from him in quite some time. It was frustrating then and it’s frustrating now. It’s very much like the filter that normally catches all these random thoughts before they escape his mouth, is missing.
It’s easy to sit there and say something like, oh just deal with it, it could always be worse.
Well, for starters, I never like to take the it could always be worse approach to things. In my experience, no sooner to I think that than something much worse happens.
However, for the record, I know it could be worse but that doesn’t mean that this isn’t completely overwhelming and exhausting anyway.
It’s honestly like a slow form of torture.
Hearing the same exact thing, over and over again is enough to drive me crazy. Add to that the constant onslaught of totally random thoughts being forcefully broadcast at me, no matter where I going the house.
I’ll just say it gets old and then painful.
Anyone have experience with this type of thing? How do you cope? I mean, it reaches a point where filtering it out become very, very difficult.
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Aug 31 2012
My boys don’t head back until Tuesday, so how it’s going to go is yet unwritten. However, I’m preparing for the typical issues we see, going into the new school year.
Elliott will likely be extremely, extremely anxious. I mean, he’s already extremely anxious. It’s not going to take much to add another extremely……….
Gavin on the other hand is very excited to go back. The problem is that I have no idea how long his body is going to able to cope.
How are your kids handling being back to school?
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Aug 26 2012
Tuesday is a huge day for the Lost and Tired family. Gavin returns to the Cleveland Clinic and Elliott returns home from the Hamptons.
Gavin is scheduled for minor surgery at 10 am Tuesday morning.
This procedure involves taking various skin biopsies from various parts of his body and using them to tailor a very specific genetic test. They will also be looking for neurofibrosis, if I recall correctly.
The procedure lasts about 20 minutes and they made special arrangements to do it Tuesday. The doctor that does this doesn’t normally do this procedure on Tuesdays.
After that we will have about 5 hours to kill before his next appointment.
The second appointment will be with the autonomic specialist. This is crucial because he will play a huge role in getting Gavin into residential treatment.
This will be a follow up and a consult as well. We need to find out what it will take for Gavin to be medically stable enough so he can be placed in treatment.
This will be a huge obstacle to overcome. In many ways, this may be more challenging than the actual funding itself.
I have many worries about Tuesday, the biggest being the minor surgery. Gavin will not be asleep for this procedure. They will however, use a numbing cream. I have no idea how the samples are collected and even less idea of how well this isn’t going to go.
I wouldn’t be excited about this happening to me. I can’t image how Gavin’s going to feel about this.
It may seem mean but we won’t tell him about this until the very last minute. He will obsess over this if we don’t. The reality is that one of two things will happen. Either he won’t care or he’s going to care a whole lot.
There’s no middle ground.
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Aug 26 2012
I wanted to update you on Gavin’s current behavioral status. I’m pleased to say that he’s been doing pretty well. At least as far as the tantrums go.
We are having less serious issues right now like not listening.
He’s not following directions and seems to just do what he wants, regardless of what we say.
We are choosing our battles very carefully right now. There isn’t a great surplus of energy lying around to deal with the tantrums that would result from holding him accountable more often.
Right now it’s more about survival…..
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Aug 25 2012
These are some pictures I took while at Gavin’s psychiatric consult this week. I never got around to sharing them. I thought I would share some of them with you as they represent part of our journey.
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Aug 25 2012
I thought that today’s discussion could be about what your experiences have been while taking your child with #Autism, outside your home and into the public arena.
How does your child handle the stress involved in leaving the safety, security and predictability of your home?
Sensory sensitivity is a big challenge for many kids on the #Autism spectrum. Do you have any tips or tricks that have helped your child to make it though the trip?
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Permanent link to this article: http://lostandtired.com/2012/08/25/how-does-your-child-with-autism-handle-leaving-the-house/
Rob Gorski is a husband and father of 3 boys on the Autism Spectrum. Gorski began his writing career in June of 2010 with his multiple award winning blog Lost and Tired: Confessions of an Autism Dad. Recently cited as the 3rd most influential Autism Blogger on the internet by Dr. Oz's Sharecare website, where he is an expert on Autism.
His mission is to create dialogue, spread Autism Awareness, educate the public on how technology can benefit a special needs family and do so in ways that society can relate to and understand.
Gorski advocates for special needs families and those on the Autism Spectrum, both young and old.
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