Tag Archive: Honestly

June 5, 2012

Gavin is already struggling today. He’s not been listening and has already had a meltdown this morning.

However, Lizze put her foot down and called him out. She said she was tired of the drama and that he had three seconds to stop before he had oatmeal until Thursday morning. He kept freaking out and so she counted.

Wouldn’t you know it, he stopped before she reached 3. Tell me that’s not control.
Honestly, it’s upsets me even more that he can stop this whenever he wants. It means that he’s doing this on purpose. Regardless of the impact on his family, he chooses to do this, not only to himself but us as well. That bothers me.

I realize that he’s likely more prone to meltdowns but still this is pretty messed up. I don’t know what his motives are but I know that the meltdowns are a willful act and an act that is impacting every person in this house.

The only thing we can do is hold him accountable and stand firm and with resolve.

Honestly, I feel really bad that we keep having to hold him accountable but he has the power to stop this whenever he wants. He just chooses to be violent and aggressive instead. You would think he would learn by now that these tactics do not work. However, he simply continues to escalate in an attempt to get his way.

My biggest concern going forward is, how far is he willing to take this? I mean, right know and for the foreseeable future, I could easily overpower him. What happens when can’t?

Tags: hold, Honestly, meltdowns, morning, motives, power, purpose, stop, struggle, Thursday

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Permanent link to this article: http://lostandtired.com/2012/06/05/the-struggle-for-power-continues/

Mar 21 2012

When you have more questions than answers

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March 21, 2012

I’m feeling quite overwhelmed as of late. We keep receiving more and more bad news. I mean, bad news is probably the wrong word choice but it’s pretty darn close.

The latest addition to the Lost and Tired family symptoms list is now seizures. I was positive that I was going to get the EEG results back for both Gavin and Elliott and everything would be normal. I wasn’t prepared to hear that they are having seizures.

Honestly, I don’t even know what to do with that information. The only experience I have with seizures is as a paramedic.

I always say that I hate going to an appointment looking for answers and end up with more questions. That has been the status quo for as long as I can remember. Yesterday was one of those rare occasions where we actually got answers.

However, we got just enough information to worry. We simply don’t know enough yet and so more tests are going to be needed.

I have to say, the most frustrating part for me is that we still don’t know why any of this is happening in the first place. I have no health problems, aside from my cholesterol is out of balance. Lizze has tons of health issues but most of these are caused by long term stress and not something that would necessarily be passed down to the kids.

Why is it then, that they have all these bizarre health issues? We’re not even talking common disorders. I mean, some of these issues are very rare.

I just don’t know what to do at this point.

Seizures are the newest problem that we have to contend with. They have likely been there all along, just undetected. We were blissfully ignorant for all this time and now that we know about the seizures, we are worried.

I don’t think there are enough. Antidepressants in the world to even take the edge off.

**Thanks for reading**

-Lost and Tired

Please join our Community Autism Support Forum

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

Tags: "Autism Speaks", adhd, android, aspergers, Autism, babble.com, bad news, balance, choice, close, Community Autism Support, Community Autism Support Forum, darn, don, EEG, end, everything, experience, Family, Forum, Honestly, ignorant, lost and tired, midNIGHT ROM, news, ocd, Parenting, PICA, place, reading, schizophrenia, schizophrenic, seizures, something, status, support, Thanks, time, tired, yesterday

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Permanent link to this article: http://lostandtired.com/2012/03/21/when-you-have-more-questions-than-answers/

Mar 04 2012

EEG Take Two

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March 4, 2012

Tomorrow morning, Elliott will be taken to Akron Children’s Hospital for his second EEG in four or five years.

When Elliott was about 18 months old, he had seizure-like episodes. He would be walking and all of a sudden, he would freeze and fall over. It was like tipping a statue over because he made no attempts to catch himself.

This pretty much freaked us out because this happened quite a few times.

We would always get him in to seen but they never found anything. He had an EEG but again, they never found anything. He eventually seemed to outgrow these seizure-like episodes.

Over the past few months, Elliott has been complaining about shaking. This occurs mostly at night and wakes him out of a dead sleep. He says after he wakes up he feels like he’s falling. This is so distressing to him that he will not go back to sleep.

Honestly, we never really thought anything of it because we were so buried by what seemed like more pressing matters. Gavin is experiencing neurological degeneration has no immune system. This is all relatively knew symptoms in the last 12 months or so.

Emmett has been battling with this PFAPA or fever disorder.

Elliott’s symptoms seemed insignificant by comparison. I don’t mean that Elliott was any less important, it’s just more like triage. We have so many challenges that we often have to triage.

I was trained to triage as a paramedic. Anytime you have multiple people that need help or are injured, you have to prioritize them by severity and chances of actually surviving. Not that this is the exact same thing but the principle is very similar.

Anyway, Elliott was being more and more persistent about this shaking. His anxiety was already through the roof and this just added more to his plate. We took him back to the pediatricians office and we were referred to neurology at Akron Children’s Hospital.

That brings us current, I think.

We go in the morning, knowing full well that Elliott is not going to make this easy. He is extremely nervous and actually, that’s why we moved his birthday and celebrated its on Friday instead of his actual birthday, which is today. He was freaking out because he didn’t want to have an EEG the day after his birthday, so that’s why we moved it.

He’s already an emotional wreck and knowing that the EEG is in the morning is just fueling the fire.

What a way to start the week….

Tags: "Autism Speaks", adhd, Akron Children, Akron Children Hospital, Akron Children's Hospital, android, anxiety, anything, aspergers, Autism, babble.com, back, birthday, EEG, Elliott, Family, fever, Friday, Honestly, hospital, lost and tired, midNIGHT ROM, morning, neurology, ocd, office, Parenting, PICA, plate, principle, prioritize, schizophrenia, schizophrenic, seizure, severity, sleep, today, tomorrow, triage, way, wreck

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Permanent link to this article: http://lostandtired.com/2012/03/04/eeg-take-two/

Feb 24 2012

It’s not selfish, it’s survival

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February 24, 2012

As I’m sure you can imagine, Lizze and I don’t get out much. What I mean by that is we don’t get out by ourselves very often.

It’s tough not to be able to spend some alone time with your spouse or partner because you’re always wrapped up in the kids.

Last year we had decided that even if we can’t get away, at least we can dedicate some time to each other, at least every once in awhile. More often than not, these plans fall through for one reason or another.

However, tonight Lizze and I hung out and had some ice cream and watched our new obsession on Netflix.

Last year, Lizze and I watched the entire series of Lost. We don’t have cable or anything so we have to wait for it to become available on NetFlix. We watched that show and finished the entire series in a few weeks.

I was personally devastated by the way Lost ended.

Since then, we haven’t been able to find a show to switch over to. Sure we have watched the entire series of King of The Hill more times than I can remember but we haven’t found anything that really motivated us to sit down and watch it regularly.

However, we recently began watching the show Supernatural and we are freaking addicted. Lizze and I steal a few hours a night, as often as possible, so we can watch 2 or 3 episodes. We are currently in the middle of season 2.

I’m sure some people would hear this and think Lizze and I are pretty sad to think this qualifies as quality time together.

To them I would say something like, as special needs parents we don’t have the luxury of spending the typical quality time together. Instead we chose to spend whatever time we can find with quality people, each other. Sometimes that all you get. Honestly, it enough for us.

I hope you all put there have your own version of quality time. Whether your single or with someone, it’s so important to have some time to yourself or with your significant other. We are living very stressful lives and if we want to survive, we need to take care of ourselves.

It’s not selfish, it’s survival.

**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, android, aspergers, Autism, babble.com, care, Community Autism Support, Community Autism Support Forum, dedicate, don, Family, Forum, Honestly, ice, King, lost and tired, middle, midNIGHT ROM, obsession, ocd, Parenting, PICA, quality, quality time, reading, reason, schizophrenia, schizophrenic, series, show, Someone, special needs, spouse, Supernatural, support, survival, Thanks, time, tired, version, way

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Permanent link to this article: http://lostandtired.com/2012/02/24/its-not-selfish-its-survival/

Feb 11 2012

Screw you Zoloft

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February 11, 2012

I don’t know what else to say but screw you Zoloft. I suppose I could say fuck you Zoloft.

Either way, I have another sleepless night ahead of me as Elliott’s is still pretty messed up from his recent experience with low dose Zoloft to treat his anxiety.

For the second night in a row, Elliott won’t go to sleep. He can’t even sit still or stop talking. Right now he’s just making weird noises with his hands and his mouth.

We have to call the doctor in the morning because this shouldn’t be happening.

I’m not sure what they can do but something needs to happen. At this point it looks like he will miss school on Monday as well. He’s barely sleeping and just won’t make it at school as he literally has no impulse control right now.

God help us. It’s not what he needs right now. Honestly, I don’t need it either.

I need my beauty rest…

**Thanks for reading**

-Lost and Tired

Posted from WordPress for Android

Tags: "Autism Speaks", adhd, android, anxiety, aspergers, Autism, babble.com, beauty, control, doctor, don, dose, Elliott, experience, Family, fuck, Honestly, impulse, lost and tired, midNIGHT ROM, Monday, morning, mouth, night, ocd, Parenting, PICA, reading, right, row, say, schizophrenia, schizophrenic, screw, something, Thanks, tired, way, WordPress, Zoloft

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Permanent link to this article: http://lostandtired.com/2012/02/11/screw-you-zoloft/

Jan 07 2012

Hello Anxiety

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Anxiety, Emmett John

January 7, 2012

I made the mistake of mentioning to Elliott on Thursday night, that he was having a hearing test, Friday after school. I was thinking…..well to be honest, I don’t know what I was thinking.

Elliott is our most typical child. While he has Aspergers, most people wouldn’t notice anything.

Having said that, Elliott is not without his challenges. The biggest of which is anxiety. Elliott is a walking, talking, compressed balk of anxiety that can meltdown at the slightest disruption.

I said above, that I didn’t know what I was thinking when I mentioned to him about his doctors appointment. No sooner did the words leave my mouth…..Elliott slipped into full blown panic mode.

There is no rationale to his panic and absolutely no calming him down. He literally cried and cried, all because he was having his hearing checked. He couldn’t sleep that night and had a rough day at school the following day.

God love him, Gavin even offered to go with Elliott so that he wouldn’t be scared.

Elliott was very difficult to work with until the appointment ended and he realized everything was going to be OK. Honestly, hearing tests are as benign as they get. No needles or bloodwork.

Still, Elliott struggled. Oddly enough, he actually had fun at the test and the staff did a great job of working with him.

When they called him back for his turn, you would have thought we walking the green mile on our way to his execution. He had tears pouring down his little face and he was shaking as he held on to my hand for dear life.

He ended up doing great though and his hearing is perfect.

This is just another example of why you shouldn’t judge a book by its cover. Though Elliott appears to be like most other kids, it doesn’t take much for him to slip into a crippling anxiety attack.

Posted from WordPress for Android

Tags: "Autism Speaks", adhd, android, anxiety, appointment, aspergers, Autism, babble.com, child, cover, day, Elliott, everything, face, Family, hand, hearing, hearing test, Honestly, life, lost and tired, LOVE, midNIGHT ROM, mile, mode, night, ocd, panic, Parenting, PICA, schizophrenia, schizophrenic, staff, Test, thinking, Thursday, walking, way

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Permanent link to this article: http://lostandtired.com/2012/01/07/hello-anxiety/

Dec 29 2011

What do I say?

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December 29, 2011