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Tag Archive: work

Mar 18 2013

A Daddy’s work doesn’t stop just because he’s sick

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My thoughts

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March 18, 2013


Even though I’m sick, my responsibility doesn‘t end.  Work still needs to be done and the boys still need my attention. Also, while Lizze has been a huge help, she needs rest as well.

Tonight, one of the things I did was full fill a promise to Elliott.  That promise was that we would spend some time playing Minecraft together.

We played Minecraft on the XBOX for a little while before I gave him his bath and put him to bed. 

Elliott and I have just recently began a world in Survival mode.  It’s a been an pretty fun experience thus far and Elliott is really, really good at Minecraft.
This is one of those games that requires you to think, create, build and explore. 

Elliott plans out his adventures and is always back in our house before the creepers come out at night.  :O

I have to say that this has been the highlight of my day. 

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Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-)

For more ways to help the Lost and Tired family, please visit Help the Lost and Tired Family.



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Mar 03 2013

Check out my #Autism Awareness Store

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Announcements

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March 3, 2013


I wanted to invite you all to visit by new #Autism Awareness Shop over at CafePress. My reasons for opening this store are many but most importantly, I want to spread Autism Awareness in unique and creative ways. My goal is to start dialogue with those unfamiliar with Autism and also show support for those touched by it as well.

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A portion of each sale will come back to me but having said that, it’s not really about the money. Honestly, every little bit helps but all I’m really looking to do is help cover the costs associated with this site, the My Autism Help Forums and the out of pocket shipping costs that go along with my giveaways.

Basically, I want to keep being able to do what I do, without having to take away from my family to do so. Does that make sense?

What I really want to do is be able to provide unique and creative ways to make the world more aware of Autism and maybe even overcome some of the stereotypes. You all know that I work somewhere outside of the box and my approach to everything is kinda unique. I feel that this approach will work outside of this site as well.

Check out my t-shirts at the shop and you will see sayings like: I love someone with Autism or Ask Me About Autism. There are many more coming but these should help get the conversation started.

Autism Awareness can begin with a simple question. That question can lead to a conversation and that conversation can lead to Autism Awareness.

Please keep in mind that this store is really new and the collection will continue to grow. I’m even open to your ideas as well.

Is there a statement about Autism that you would like to make? Let me know and I’ll try to help with that.

I’m also going to work with CafePress on more giveaways in the future as well. This you allow my readers the opportunity to get these items at no cost. Who doesn’t like free?

Thank you again for all your continued love and support. I’m really hoping that this will help me to continue to help others. :-)

 

Check out Lost and Tired’s Autism Awareness Shop

 

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Dec 21 2012

A quick tip to help organize your kids tooth brushes

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My thoughts

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December 21, 2012


We have adopted the Philips Sonicare E-Series of toothbrushes and have been using them for well over a year and a half.  They are affordable and work very well with kids on the #autism spectrum.

Anyway, we had a problem because we were always removing the brush heads because we shared the bases.

The other day, I accidentally discovered that the brush heads stuck to a can of shaving get cream.

Yes, I know how magnets work.  I just hadn‘t thought of doing this particular thing. 

As you can see, the brush head are organized, isolated from each other and easily reachable.  I like the fact that they are just laying around and the kids just like the fact that they actually stick to the side of the can.

I just thought I would share this little trick in case someone could benefit from it.  :-)

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Dec 05 2012

Operation Hope: Stepping Back

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Operation Hope

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December 5, 2012


We had Gavin home for a little bit this afternoon.  After picking him up from school, I asked him how his classday was.

Apparently, that was a big mistake.

I honestly don’t even know why I put myself through that.  Gavin never answers my questions and when he does, he dances around the truth because he doesn‘t want us to know.

Today was one of those days. Apparently, he had gotten frustrated in Math class.  I asked him what happened.  He couldn’t remember. Lizze and I patiently listed off what we thought could have happened and Gavin just said no.

Lizze called the school to speak with Gavin’s teachers.  We figured that would be the best way to know what actually happened.

 

Our concern was that maybe he needed help in something and we wanted to make sure that he got that help.

Instead we found out that apparently, Gavin doesn‘t like to show his work when he does math problems. His teachers explained to him that sometimes, he has to show his work, especially when that’s what the instructions tell you to do.

We also learned that the other problem is that Gavin wants to rush through his work so that he can go play on the computer while he’s waiting for the rest of the class to finish.

He rudely interrupts the class and essentially demands that his teacher stop what she’s doing and check his papers so that he can play games on the computer. The teachers have taken to simply waving him through because otherwise it disrupts the rest of the class.

That will be stopping, beginning Thursday morning.

I’m going to speak to his teacher and explain that Gavin simply doesn‘t get computer time unless it’s a necessary part of the lesson.

That should address that problem.

I also don’t want the teachers taking any crap from Gavin either.  He absolutely must be held accountable for his decisions and subsequent actions.

The bottom line is that Gavin will not be dictating anything to his teachers.  We’ve had the same problems at speech and OT as well.

Having said everything above, I also realized that Gavin no longer resides with us.  Many of the day to day decisions now fall on Lizze’s parents.  I will still address the school issues but this still brings up something that I hadn’t really faced yet.  I have to step back and let Lizze’s parents take over the day to day parenting.  Nothing against them at all, it’s just hard to take that step back,  at least for me.

Everyday I find a new personal challenge that I have to find a way to meet.  This one is particularly difficult for me.  :-(

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Dec 03 2012

Operation Hope: Medication Monday

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Gavin, Operation Hope

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December 3, 2012


Today is going to be a day of medication changes for the Lost and Tired family.  I’ve already discussed Elliott’s situation but I haven’t explained Gavin‘s. 

Tonight, Gavin will begin taking ativan as a means of suppressing his constantly elevated heart rate.

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We’re going intobthis knowing that there are some serious risk factors.  The combination of the ativan and the clozapine that he’s already on increases the risks of side effects for both drugs.

The ativan isn’t as big of a deal but the clozapine is.  Clozapine is the most tightly controlled medication in the United States. It’s been responsible for many deaths in the EU. The most serious and deadly side effect has to do with the destruction of immune system. 

If safely controlled and tightly monitored, Clozapine is an amazing anti- psychotic. In Gavin‘s case, it’s the last medication in this category that he has available to him. He has suffered no side effects and he has been on it well over a year now. 
He went from weekly blood work to biweekly blood work. Currently, he gets his blood work done one a month. 

The chances of any serious happening advantage result of the combination, should be minimal at this point. 

I know it may seem like a big risk. However, leaving his heart rate out of control is even more dangerous at this point.  Basically, it’s the lesser of the two evils. I’m not thrilled about this but we literally don’t have any other options at this point.  We have some of the best neurological minds in the world working on this and right now, this is our best shot.  

Lizze’s parents will have to watch him closely but that’s something they will do very well. 

It’s bad timing to begin this now but we have put it off for too long and honestly, it’s always going to be a bad time. 

Please keep Gvain in your thoughts and prayers. 

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Jul 25 2012

All I can say is WTF

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Autism

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July 25, 2012


I’m just a tad bit frustrated at the moment.  The nurse that I spoke with last night and this morning did not provide accurate information.  We were concerned yesterday because of the day to day,  extreme fluctuations of Gavin’s lithium levels.

This morning she reported to me that Gavin’s levels were so high because he had just taken his meds prior to the blood draw.

That turns out not to be the case.

Gavin was admitted Friday night and received his medications at 11pm that night.  They drew his blood around 7:30-8:00 am the following morning. 

At that point,  Gavin’s levels should have been low because he was due for another dose.  They call that being in a trough. Basically,  Gavin’s levels drop as time goes on.  This is why he takes it twice a day.  This maintains a constant level in his system.

However,  in Gavin’s case,  the opposite has happened. The bottom line is that Gavin’s body seems to be metabolizing his meds in an unpredictable manner.

This of course,  is a huge problem,  especially considering the meds we’re talking about.

We spoke with Cleveland and they are going to figure out what needs to happen and call us back.  They told us that he is going to need very frequent blood work,  because these are dangerous medications and we can’t afford to take any chances.

So to this I have to say,  WTF.. Really,  WTF?

How do you give them wrong information?  I mean,  Jesus Christ,  it’s friggin right in front of you.

We went from being scared to relieved to being scared again,  since this time yesterday. This time however,  I’m passed off. . This is way too big a deal for simple mistakes like this to happen.

We would have made other arrangements if we had known what we know now. 

Our appointment with Dr.  Reynolds has been bumped up to tomorrow evening and he’ll know what to do.  My fear is that the only truly safe thing to do is take him off his meds. 

The thought of that scared the shit out of me. On the other hand,  so does the alternative.

It don’t even know what to think

**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.

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Jun 21 2012

Special Needs Parenting: When things just work out

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Autism

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June 21, 2012


I wrote earlier about Lizze and Elliott both being sick.  I mentioned my concern of Gavin getting sick as well.  Having said that,  sometimes things just work out for the Lost and Tired family.

While it doesn’t happen very often,  I’m more than grateful when it does. 

It appears as though no one is actually sick.  Lizze nausea seems to be tied to her back pain right now.  As she finds more comfortable positions to sit in the nausea kinda goes away. 

As far as Elliott,  the puker goes,  he’s acting “normal”.  He’s hungry and wants to play.  I noticed that he had a runny nose this morning and I think I pieced together what happened last night or rather,  early this morning.

Elliott has an extremely sensitive gag reflex.  It doesn’t take much for him to vomit.  What happens is that when he gets post nasal drip going down the back of his throat,  he will gag.  Once he gags,  it’s all over,  literally.

I’m pretty confident that’s what happened.  It certainly wouldn’t be the first time. Plus, the fact that he’s hungry and wants to play is not consistent with his behavior while actually sick.

Thanks God for the small favors.  Hopefully,  we’ll escape this being something bigger and everyone will be fine today. 

Fingers crossed….  :-)


**Thanks for reading**

       -Lost and Tired

Please join our Autism Help Forum

Look for “Autism Help” app at the Google Play Store

MyFreeCopyright.com Registered & Protected

Posted from WordPress for Android so please forgive the auto-correct induced typos

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