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

Tag Archive: difference

Mar 19 2013

Paying it Forward can make a difference

I wanted to share with everyone the results of my personal quest to pay it forward. I know that idea of paying it forward may seem silly to some, but I’m here to tell you, it can make a difference.

You’ll notice there are quite a few names on this list. Myself and Idolian worked together on this one as well. 
All these organizations payed it forward, in order to benefit the kids at Summit Academy.  :-)

I truly hope to see more of this type of thing happening.  It gives me hope that despite all the horrible things going on in the world around us, there’s still hope for the human race. 

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Permanent link to this article: http://lostandtired.com/2013/03/19/paying-it-forward-can-make-a-difference/

Dec 18 2012

Autonomic Crisis: Gavin seems to be crashing

We just got home from Gavin‘s martial arts promotion.  Gavin did really well and I will have pictures up when I can. 

Right now, we have a problem.  It looks like Gavin is in another autonomic crisis.  After promotion we got spend some time with him in his classroom.  He didn’t look good to me and I asked him to check his heart rate.  He did and it was 50 bpm, standing up. 

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That would explain why he was so shaky and pale.

I had him sit down and take it again.  This time his heart rate shot all the way back up to 138 bpm. That’s almost a 100 bpm difference.

That’s not good at all. 

Your body is supposed to compensate when you transition between sitting and standing.  There should be almost no difference or change in your heart rate or blood pressure.

Gavin‘s body is not compensating at all.  Truth be told, I’m really worried. 

Despite having moved him out of our house for behavioral reasons, we love him the same.  Nothing will change that.

I’ve placed a call to Dr.  Moodley’s office at the Cleveland Clinic.  He is Gavin‘s autonomic specialist and the goto person for this type of thing.  We are waiting to hear back and find out what he wants us to do. 

We aren’t sure if we should take him all the way to Cleveland or bypass Cleveland and go to Akron Children’s Hospital, as it’s much closer.

At the moment, Gavin is still at school.  His teachers are keeping a close eye on him and Gavin insists that he’s okay.  We figured there’s nothing we can do at home that they can’t do at school so we would wait to hear back from the doctor before deciding, what if anything we should do.

I’m at a point to where I want him admitted until they figure out what the hell is going on with him.
His body can’t sustain a heart rate of 135+ bpm indefinitely.  At some point he will crash and we want to figure this out before that happens. 

Please keep him in your thoughts and prayers. I will keep you all posted, as always.

Permanent link to this article: http://lostandtired.com/2012/12/18/autonomic-crisis-gavin-seems-to-be-crashing/

Dec 02 2012

What a difference a kitten makes

Something happened today that has never happened before, at least that I can remember. 

Elliott took a 4 hour nap yesterday afternoon.  He’s never been relaxed enough to really do something like that.

He was snuggled up with his kitten, Dean, and sleeping away like a baby. I was actually quite amazed. Normally, if you even bring up the idea of a nap, Elliott will freak out.  However, with Dean snuggled up with him on his bed purring, Elliott was just out like a light. 

I’m really hoping that Dean with have a positive impact on him. If yesterday was any indication, this could indeed be very positive.

I also don’t mean this in the sense that it’s Dean’s job to make Elliott feel better. 

However, much like Bella helped Emmett, I’m hoping Dean has the same type of positive effect on Elliott.  In my experience, animals can have a tremendous impact on a child with #Autism. 

Bella brought Emmett out of his shell

I’m hoping that Dean and Elliott continue to grow a bond that can provide Elliott with companionship.

It really is amazing to see how different Elliott is when he’s with his new friend Dean. I really hope this continues.  :-)

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Permanent link to this article: http://lostandtired.com/2012/12/02/what-a-difference-a-kitten-makes/

Mar 16 2012

Friggin’ time change

Every time change presents problems for the Lost and Tired family.  Personally,  I have adjusted to daylight savings time but my kids haven’t.

Typically,  it takes several weeks for them to adjust. 

Their internal clocks are all screwed up,  so they don’t sleep through the night.  At times they either can’t fall asleep or they wake up at some ungodly hour.  Needless to say,  the boys don’t sleep,  we don’t sleep.

We tried things like preparing them for the time change ahead of time but it never seems to make a difference.

We just have to hunker down and wait this one out.  I realize that easier said than done but sometimes this just isn’t much that can be done.

How do your kids handle the time change?

**Thanks for reading**

       -Lost and Tired

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Permanent link to this article: http://lostandtired.com/2012/03/16/friggin-time-change/

Jan 29 2012

Do you ever feel like a complete failure?

Do you ever feel like a complete failure?  I mean,  everything can’t go right all the time but to have everything go wrong….

This is one of my really honest posts where I’m just sorta spilling my guts.  I say what I need to say,  so that I can hopefully be able to walk away from it when I’m done and feel a bit lighter.

It’s no secret that things could be going better for the Lost and Tired family.

What I don’t often share is how that makes me feel. To put it bluntly,  I feel like a complete failure,  as both a father and a husband.

Maybe it’s the fact that I missed a few days of antidepressants while I was sick or maybe it’s the reality of life slapping me in the face. Either way,  I’m feeling pretty low right now.

I want so much better for my family then what I’m doing. 

We’re in a bad neighborhood,  my kids can’t play outside and our goddamm van was stolen in broad daylight,  right in front of us. As badly as we need to move,  now we have to buy a new van or rather a replacement. 

We have 3 days left on the rental and I have no idea what we are going to do.

At least half of what we get for the settlement is going to pay off the repairs we had to have done right before Christmas.

I’ve been trying to remain as positive as possible but I don’t know if I can do it anymore.

I’ll tell you something about my wife and kids,  they never complain.  They are all worried but they don’t complain..ever. In some weird way,  that almost makes it worse because it’s like they are content with what little I have been able to do.

I asked the boys today if they were happy and they said they were.  The problem is that I know how much better I need to be doing and they just don’t understand the difference.

I still have to get school figured out for Emmett John and get Elliott in to OT ASAP.

Gavin needs to get into to see the mitochondrial doctor at Akron Children’s Hospital but we are having trouble getting all the records transferred.

Lizze needs to get into the Cleveland Clinic as well for better treatment options.

I’m simply,  completely and utterly overwhelmed with every single aspect of my life right now. 

I really need to remember to take my Paxil tonight.

Alright,  I’m done venting.  I appreciate you all listening.  I just needed to get that out.  I’m not looking for anything.  I just needed to get that off my chest.  My stomach was getting upset and I don’t want to get sick again because I’m so upset that I relapse.

Thank you all for listening…

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Permanent link to this article: http://lostandtired.com/2012/01/29/do-you-ever-feel-like-a-complete-failure/

Jan 04 2012

Balance

I’m finding it increasingly more difficult to find a balance. With all Lizze has going on right now, I find it very difficult to stand by and just watch her go through it.

I’m very much a caregiver by nature. Lizze would say that I have to fix everything, and there’s probably truth to that. I know it can be counter productive at times but I mean well.

It’s difficult to describe the feeling of helplessness that comes with watching your loved ones struggle with everyday life and be powerless to actually make a difference.

It’s been one of those days where this struggle is particularly difficult for me.

Lizze is having a rough time and Emmett is miserable. I can’t make their pain go away and that really bothers me.

I know it’s irrational but it’s just how I feel.

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Permanent link to this article: http://lostandtired.com/2012/01/04/balance/

Dec 28 2011

Managing Meltdowns

I thought this was something that might benefit other families so I decided that I would share it here on Lost and Tired.  If you are a regular reader then you have probably already seen many of the videos I have posted pertaining to my oldest son, Gavin, and his meltdowns.

For many years we have been dealing or rather, trying to deal with these meltdowns.

Over the years they have become much more aggressive and potentially dangerous, not to mention disruptive and often times destructive. When he has these meltdowns, he is essentially holding the people in the house hostage. He doesn’t seem to show regard for how this behavior negatively impacts the people around him and that is something that I’m trying to address.

I have always said that I believe Gavin has at least some control over these meltdowns. As time has passed, I have grown to realize that many times, these meltdowns, at least in Gavin’s case, are willful acts. I have also struggled with how to deter these unwanted or inappropriate behaviors. With all that said, here is what I have noticed about Gavin during these meltdowns.

Gavin will appear to lose control and just sink into the meltdown. However, I have discovered, that while he appears to be out of control, at least part of this is a willful act. By willful act, I mean that he is basically making the choice to have the meltdown. I feel comfortable saying this about Gavin because, he seems to have the ability to stop the meltdown on a dime and start right back up again.

Last week I noticed that as Gavin was getting ready to explode into a meltdown that he stopped and carefully put aside his prized Lego ship so that nothing happened to it. After that went right back to his meltdown. I decided that I would try something new and make him hold his Lego ship during these meltdowns and see how that would affect his willingness to continue.

What I found was very interesting.

While he was content to disrupt, terrify his siblings and destroy other peoples property, he was quite careful not to do so to his own. That is where the Lego ship came into play. I thought that as long as he was choosing to do these things that he should have something to lose as well. Instead of making him sit on his hands (for safety reasons) and cross his legs (also for safety reasons), I decided that he would hold his Lego ship with both hands.

This way, if he continues the meltdown, there are very real and very natural consequences for doing so. Those consequences would be the possible destruction of his Lego creations. You can see in the video below that he will appear completely out of control. However, the moment a piece of his ship falls off, he stops the meltdown in order to put his ship back together. Once it’s repaired, he picks up the meltdown, right where he left off.

Does this mean he has control?

In my opinion, this means that he has at least some control. As you watch the video, you’ll see a few examples of this. It gets to the point that I finally tell him,  I will be keeping any pieces that fall off and he will have to earn them back and a later time. I believe this to be a very effective and natural consequence for his deliberate actions.

-Note-This video is meant for educational purposes and not intended to make Gavin look bad. My goal is to help others out there struggling with the same thing. Perhaps something you see in this video can help you to better understand and/or manage the meltdowns in your life. i want to be very clear when I say that Gavin is a great kid and I love him very much. with that said, the behaviors are a major problem. I understand the difference between to the two, I hope you can as well.

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Permanent link to this article: http://lostandtired.com/2011/12/28/managing-meltdowns/

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