Elliott / Emmett John / My thoughts / Sensory

Bedtime has become a sensory nightmare

Last night was a challenge once again because Emmett wasn't tolerating a blanket. Everything has to be just so, in order for him to be comfortable enough to fall asleep.  I'm going to be brutally honest here. I didn't even dick around with trying for extended periods of time to help him work through this.  At this point in time, it's more important that we all get some sleep, rather than worrying about the means in which we obtain it.  Like I said, there was no dicking around. I went straight for what we knew ow works and works rather quickly. That approach is as simple as snuggling and singing him to sleep in our bed. For whatever reason, it's helping him fall asleep.  He used Lizze's super soft blankets…

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August 7, 2017
Fragile Health Parenting / Gavin / My thoughts

I’m incredibly nervous

We head into today, unaware of what it's going to bring us in regards to Gavin's and his ever changing health.  It's a somewhat busy schedule today. I need to get Gavin in for his bloodwork, first thing in the morning. I have his IVIG infusion after that as well. We also have two appointments for Lizze in the afternoon.  I'm incredibly nervous about how Gavin's labs are going to turn out.  The labs from Friday were a mixed bag. It was like a free for all with his numbers. There are three main things we're watching. We're closely tracking his Neutrophil levels, WBC count, and his platelets.  This past Friday, his Neutrophil went down again, his WBC count remained the same from the previous day, and his platelets when…

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August 7, 2017
Inspirational Posts / My thoughts

Sharing our journey with #Autism, Fragile health, #Bipolar and major #Depression

If you've checked out Lizze's blog, you will learn that she's really struggling with depression right now. Please understand that when she's writing about how she's feeling or what she's experiencing, she's not looking for sympathy.  Her mission, much like mine, is to help people understand what it's like to go through something.  In her case, she's sharing her experience with Bipolar II.  It's easy to look at what either of us writes about and feel as though we're being negative. It's important to understand that many times, raising kids with Autism, or living with something like Bipolar disorder, can be very negative.  That's not meant to be a reflection on the people with either condition because it's not.  The only way to help people better understand what it's like to…

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August 6, 2017
Autism Parenting Insight / Gavin / My thoughts

Just because he can speak doesn’t mean he can always communicate 

Gavin has been sleeping most of the day thus far. He says he's feeling fine but this is unusual for him.  It's really difficult to know how he's feeling because he's not a reliable source of information about himself. I know that sounds weird, as everyone should be the best source of information about themselves, but not in Gavin's case.  Gavin lacks a great deal of self awareness and that's needed in order to convey to others, with any accuracy, how he's feeling.  Merriam-Webster defines communication as a technique for expressing ideas effectively (as in speech) He may say he's feeling fine because he's not in any physical pain. That said, he might be feeling run down, tired, nauseated, or sick. It's really hard to know with any certainty, how Gavin's…

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August 6, 2017
Read more about the article I’m not feeling a great deal of energy coursing through my veins
My thoughts

I’m not feeling a great deal of energy coursing through my veins

We have absolutely no plans for today. It looks like rain is going to be the theme of the day, and that eliminates any outdoor activities.  The above mentioned weather is taking a heavy toll on Lizze. She's miserable and in a great deal of pain.  Emmett and Elliott seem to both be in good moods, while Gavin is sleeping again. I'm trying to get Lizze to go lay down but she's insisting on helping me take on the rest of the morning.  I'm not feeling a great deal of energy coursing through my veins yet, and therefore I may take it easy for a bit. 

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August 6, 2017
Read more about the article We’ve been hit with a new #Sensory issue
Emmett John / My thoughts / Sensory

We’ve been hit with a new #Sensory issue

We've hit an unexpected, but not all too surprising bump in the road with Mr Emmett. I've shared many times how sensory processing disorder impacts his life on a daily basis.  Here are a few examples.  Emmett hasn't worn shoes and socks in over a year. He's worn socks temporarily on a few occasions over the last year but that's all. He will only wear crocs, but not just any crocs. His crocs have to have a smooth insole. There can't be any texture to it, or else he won't wear it.  His shirts have to come exactly to his waist. Any more and it's too big. Any less and it's too small.  He will only wear pants that don't button or snap. He can't do buttons or snaps on…

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August 6, 2017
Read more about the article My mind is writing checks my body can’t cash…. yet
My thoughts

My mind is writing checks my body can’t cash…. yet

First a super quick update..  There were some things we had planned for the weekend that we've had to cancel in light of Gavin's current circumstance. It sucks but there's no question it's the best thing to do, at least until we know more.  I was thinking about taking the kids to see the new Transformer's movie, until I remembered about Gavin. We'll have to do a movie night at home instead.  Anyway, the point of this post was to share a bit of outside the box thinking.  I'm really working to get back in shape, or at least better shape. Getting back to where I was before a major back injury and three kids, is a tall order. lol Lizze is sleeping and frankly in rough shape at the…

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August 5, 2017
Read more about the article I’m feeling especially human after the week we’ve had
My thoughts

I’m feeling especially human after the week we’ve had

This week has taken its toll. Actually, the last two weeks have taken their toll. As much as we try to shield the kids from the grownup things we have to deal with, they almost always pick up in it. They might now know what's wrong, but they know some things wrong in general. They're very perceptive.  I don't know how long it will be before we see the other side of this tunnel, but as of yet, I'm not seeing any light in front of us.  Neither Elliott or Emmett were able to fall asleep last night. They both had their Melatonin and Benadryl, but Emmett didn't fall asleep until right before midnight.  I ended up on the couch in the living room with Elliott, and he wasn't out…

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August 5, 2017