Tag Archive: skin

As I write this my beloved Auntie Paula is dying of lung cancer. Stupid, freaking, destructive cancer. I hate it. I hate that I’m not with her more. It’s not my place to be with her. My uncle is there. My cousins, her daughters, are there. And her grand-daughters are there. My Grammy Lou Who (I only call her that here on the blog, I don‘t know why.) is there with my partner in crime, my Auntie Sharon. My Auntie Paula doesn‘t need me there. Yet, I feel as if I should be there.

I feel like I’m moving through molasses. Every breath is too thick and it hurts. My brain feels fuzzy and hazy, like I’m drunk and stoned. Only I’m stone cold sober. Moving just feels… awkward. I can’t really explain it but my body doesn‘t feel like it’s entirely mine. Everything hurts – every joint, every muscle, every everything – which isn‘t new or unusual yet it is. This isn‘t my usual pain. This isn‘t my usual achy don‘t touch me, my skin feels like it’s on fire pain. Although my skin does feel like it’s on fire. It just doesn‘t feel…right.

I’m hungry one minute. I feel like I’m starving and I haven’t eaten in days (I have I assure you). Then 10 minutes later the mere idea of food turns my stomach and I can’t stand to look at it.

What the hell is happening to me?

Does any of this make sense?

If you have any thoughts or ideas or well wishes or whatever please leave them as a comment on my post on my blog so that I can enjoy them.

Thank you for your love and support!

Tags: android, aspergers, Autism, Autism Awareness, Auto, cancer, caption, doesn, don, Draft, feel, fire, isn, look, lost and tired, pain, Rob Gorski, skin, special needs parenting

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Permanent link to this article: http://lostandtired.com/2013/03/24/grief/

Apr 27 2012

#Autism can be a pain in the butt, literally

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April 27, 2012

While I was giving my riveting speech (sarcasm) last night at Stark State College, Lizze was home with the boys. Unfortunately, they were less than well behaved.

The highlight of the evening had to be Emmett biting Gavin on the butt. That’s right, on the butt.

He actually broke the skin, and he bit through all his clothes. For obvious reasons, I don’t have a picture to share, but pretty ugly. You may remember about a year ago, Emmett had bitten Gavin on the stomach and broken the skin. Gavin needed and received a tetanus shot. So he’s okay as far as that goes…..thankfully.

That doesn’t however, address the issue of Emmett biting again.

If Elliott had been bitten, he would have needed a tetanus shot and that wouldn’t have been a fun experience for anyone.

Emmett moved past this behavior last year but it seems as though we are circling back around for another run….

**Thanks for reading**

-Lost and Tired

Please join our Autism Help Forum

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

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

Tags: app, Autism, butt, Emmett, Forum, pain, reading, skin, Thanks, year

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Permanent link to this article: http://lostandtired.com/2012/04/27/autism-can-be-a-pain-in-the-butt-literally/

Mar 17 2012

I received an award today

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March 17, 2012

I received an award this morning. To be completely honest, I’m not exactly sure what I did to deserve this but someone sure felt I deserved it and that someone was Emmett.

He told me that it was my award and that had to put in on my shirt and not my skin.
On my shirt it went and I wore it proudly, until it feel off at some point and I lost it.

**Thanks for reading**

-Lost and Tired

Please join our Community Autism Support Forum

Posted from WordPress for Android

Tags: "Autism Speaks", adhd, android, aspergers, Autism, Award, babble.com, community, Community Autism Support, Community Autism Support Forum, Family, feel, Forum, lost and tired, midNIGHT ROM, morning, ocd, Parenting, PICA, point, reading, schizophrenia, schizophrenic, shirt, skin, Someone, support, Thanks, tired, today, WordPress

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Permanent link to this article: http://lostandtired.com/2012/03/17/i-received-an-award-today/

Mar 09 2012

Please say a prayer for Elliott

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March 9, 2012

Elliott woke up this morning complaining about his arm hurting. He had received two booster vaccines 2 days ago so it seemed that tenderness was to be expected.

However, when I looked at his arm, I was taken aback. His entire upper arm is swollen and and stiff. The skin is very hot to the touch. This appears to be a rather serious reaction. We are calling the pediatrician to find out whether we should there or straight to Akron Children’s Hospital.

Elliott is freaking out and I’m a bit worried myself. This was not like this last night. This has occurred within the last few hours.

Has anyone ever seen this.

The pictures don’t show all the redness but you can see what I’m concerned about.

Please say a prayer that this ends up being ok. Thank you so much.

**Thanks for reading**

-Lost and Tired

Please join our Community Autism Support Forum

Posted from WordPress for Android so please forgive the typos. Auto-correct and I don’t get along very well.

Tags: "Autism Speaks", adhd, Akron Children's Hospital, android, anyone, arm, aspergers, Autism, Auto-correct, babble.com, bit, booster, Children, community, Community Autism Support, Community Autism Support Forum, Elliott, Elliott Elliott, Family, Forum, hospital, lost and tired, midNIGHT ROM, morning, ocd, Parenting, PICA, prayer, reaction, reading, say, schizophrenia, schizophrenic, skin, support, Thanks, tired, touch, WordPress

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Permanent link to this article: http://lostandtired.com/2012/03/09/please-say-a-prayer-for-elliott-2/

Dec 10 2011

Meltdowns are back on the menu

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December 10, 2011

I’m writing this post and feeling quite overwhelmed and frustrated. Gavin is back to having meltdowns each day again.

We had experienced a lull in number of meltdowns he has had in recent months.

However, that period of peace and relative tranquility has come to an end. Gavin is back to having meltdowns over anything that doesn’t go his way and I’ll be real honest with you here, it’s driving me crazy.

We had at least two meltdowns today alone. I don’t remember what the first one was about, but the second one involved a decision he made causing Emmett to get hurt.

He starts out by bending his fingers back to the point of almost breaking them. Then he slams his foot to the side so he’s standing on his ankles, if that makes sense. This is followed by him teasing up the rest of his body and then comes the screaming.

This afternoons meltdown sent Elliott into a panic and flying down the stairs.

I’ve come to the point that I accept the fact that Gavin is going to have these meltdowns and very likely self-injure. Sadly, I have grown callous to that as it has happened way to many times and he tries to use the self-injury as a means of manipulation.

What I do have an issue with and this is what frustrates…no possess me off. Gavin doesn’t seem to recognize, let alone care about the impact his actions have on the rest of the family.

When he melts down and causes one of the other boys to either get hurt or become terrified by his actions, it gets under my skin.

I have become a bit complacent in recent months because we haven’t had these issues. As a result, I have let things go for fear of the meltdown that may ensue if I address the problem in that manner in which it warrants.

Does that make sense? Do you ever base a disciplinary decision on whether or not you can deal with the fallout that will undoubtedly happen after a consequence has been dealt?

I have and I can admit that.

Sometimes it simply comes down to survival. Sometimes the right thing and the wrong thing seem to pale in comparison to literally surviving the moment.

It’s not always the best thing to base a decision on but the already fine line between good and less than good decision making in special needs parenting can sometimes become less important than physically living to fight another day.

We typically call it, picking our battles.

As far as Gavin’s meltdowns are concerned, we have to decide of correcting a negative behavior is worth the 45 minutes we will have to endure that meltdown that will more likely than not follow.

This isn’t an easy decision because there are both long term and short term things to consider, as well as the affects those decisions will have in the rest of the family.

Nothing about this is easy, but than again, if it were easy, anyone could do this job…right?

This has been posted to WordPress via Galaxy S2 Epic Touch 4G by Samsung, without the use of proper editing tools.

Tags: "Autism Speaks", adhd, android, aspergers, Autism, babble.com, back, body, care, consequence, decision, editing, fallout, Family, foot, Gavin, impact, job, lost and tired, MEANS, meltdown, meltdowns, menu, midNIGHT ROM, nothing, number, ocd, one, Parenting, PICA, rest, right, schizophrenia, schizophrenic, sense, skin, thing, touch, WordPress

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Permanent link to this article: http://lostandtired.com/2011/12/10/meltdowns-are-back-on-the-menu/

Dec 10 2011

Perfectly Imperfect

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December 10, 2011

Perfectly imperfect, sounds like an oxymoron, right? True, but beneath the surface it means a great deal more to me.

When I tried to come up with a word or phrase that describes my family, more specifically, my three boys on the Autism Spectrum, I came up with perfectly imperfect.

My family is far from perfect. Having said that, who’s really is?
Even the most typical of families has their problems. Granted, most aren’t dealing with the same struggles that we are.

Sometimes, people think the grass is greener on the other side of the fence, but I think you’d be surprised.

Life for the Lost and Tired family is beyond stressful and overwhelming. We experience setback quite often. However, we also experience victories, maybe not big ones but a victory, regardless of its size, feels awesome.

If I must spend my life in the trenches, fighting for everything we need and every little baby step forward, I can’t image doing that with anyone besides my family.

True, I would love to remove the challenges life has given to my wife and kids. However, I know that I can’t, at least at this point in time.

My family’s struggles have taught me to appreciate so much, the little things in life. Every hug and kiss I receive from my kids is so filled with love and I can feel that.

My time as the head of the Lost and Tired family has taught me many things. I’ve experienced the pain and heartache of loss. I’ve experienced the frustration of setback and bad news far more often than anything else.

With that said, as a family, we ways pull through together in the end, sometimes by the skin of our teeth.

I honestly don’t know if I could do this with any other family. There is something about my family that while not perfect, is a perfect match for me and I wouldn’t trade them for anything in the world.

That is why I say that my family is perfectly imperfect.

This has been posted to WordPress via Galaxy S2 Epic Touch 4G by Samsung, without the use of proper editing tools.

Tags: "Autism Speaks", adhd, android, anything, aspergers, Autism, babble.com, deal, editing, editing tools, everything, experience, Family, feel, frustration, grass, head, heartache, hug, life, lost and tired, LOVE, midNIGHT ROM, ocd, Parenting, phrase, PICA, right, schizophrenia, schizophrenic, setback, skin, something, surface, time, tired, Tired family, touch, victory

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Permanent link to this article: http://lostandtired.com/2011/12/10/perfectly-imperfect/

Dec 06 2011

You know it’s gonna be a bad night when……

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Gavin, Parenting

December 6, 2011