Read more about the article It’s not his fault and yet he blames himself
Gavin / My thoughts

It’s not his fault and yet he blames himself

Yesterday was a rougher day for Gavin. I should clarify. He was well behaved as usual, but he was physically struggling a bit. Aside from the incessant talking, which only bothers those he's talking to, it was almost like his body was failing him. Let me explain.  There were several times where Gavin legs just sorta gave out on him and he either fell or almost fell.  Unfortunately, this seemed to only occur while he was walking up the stairs, which made this even more dangerous.  Gavin was very frustrated with himself but there wasn't anything he could do about it. It wasn't something he had any control over but he still felt like he was doing something wrong.  It really sucks because life is hard enough for him without blaming…

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January 9, 2017
Read more about the article That was horrible
Gavin / Immunology / Lizze

That was horrible

We just arrived in Cleveland for Gavin and Lizze's appointments. The drive was horrible due to the weather and very poor visibility. Things were made worse by our windshield wipers freezing in place once we were on the freeway. That was not fun at all. We should be on our way home in about an hour or so and I've already fixed the wipers and topped off the wiper fluid. Hopefully, our trip back will be a bit easier.

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January 5, 2017
Read more about the article Perception: One reason why being an #Autism parent is so hard  
Autism Parenting Woes / Gavin / My thoughts

Perception: One reason why being an #Autism parent is so hard  

I mentioned earlier that I've been struggling with Gavin today. Just so we're perfectly clear, he's not being a problem like he used to. He's simply being Gavin and that's exhausting for those around him, including myself.  Gavin is absolutely struggling in his daily life. He doesn't necessarily see it as struggling because he doesn't really possess that higher level of self awareness anymore.   Here's what kind of things are frustrating me now.  Last night, Gavin finished up his infusion and removed the needles from his stomach. He always has some tissue on hand in case there's any leakage or bleeding.   He removes the needles and I hear him freaking out about how badly the one infusion site was bleeding but he seemed to have addressed it himself…

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January 3, 2017
Read more about the article Does anyone have experience with their kids pulling their hair out? 
Gavin / Hair Pulling / My thoughts

Does anyone have experience with their kids pulling their hair out? 

Apparently, I spoke too soon when I said that Gavin was having a good day because something has once again come to light.  At some point between the time Gavin woke up this morning and now, he's been plucking the hairs on his goatee to the point where I had to make him shave it all off.  I don't think we've seen this in at least a few months but he's very much back at it today. I know he pulls hair from other places also and I don't make it a habit of checking at all.  The only time I know it's a problem is when I see him doing this to his facial hair. When his goatee comes in, it comes in very thick and dark. As a…

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January 1, 2017
Gavin / General Update / Heartbreak

A HEARTBREAKING UPDATE on Gavin 12.24.16

I wanted to take a few minutes and bring you all up to speed on Gavin's current status. Lizze and I have been seeing some things that while concerning, aren't really super surprising.  Behaviorally, Gavin is continuing to do well. Unfortunately, there's more to Gavin's situation than behavioral concerns.  I remember a time in the not so distant past where his behavioral issues were so serious, we had to actively seek out residential treatment. That's no longer even visible in our rearview mirror.  The issues of concern right now are are physical and emotional health.  Gavin's physical health seems to be sorta stable right now but we're waiting to get his lab results before letting our guard down.  Over the last few weeks, we've been witness to relatively significant cognitive…

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December 24, 2016
Gavin / My thoughts

Gavin continues to regress and it’s horrible to witness 

This will be a good news - bad news entry but I'll begin with the good news.☺  The good news is that since Gavin's peeing blood situation earlier in the week, there hasn't been anymore instances of this happening again. Assuming it happened in the first place, perhaps it was a one off kinda thing and we won't see this again.  That's really the end of the good news for now but you have to admit, not peeing blood anymore is definitely a good thing.   Unfortunately, the rest of what I have to share is of a sad and even heartbreaking nature. 🙁  Gavin's been very mission oriented lately and that means he's continuing to lose touch with reality. Almost every morning this week, Gavin has rushed off to…

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December 17, 2016
Gavin / My thoughts

Why I’m so proud of Gavin this morning

Gavin's bloodwork went we this morning, not that it ever doesn't anymore. We went to the lab after dropping the boys off at school today because Gavin was due for his Clozapine refill and that can't happen without current bloodwork.  As usual, I dropped him off at the front door and he signed himself in. I waited in the car while he did what he had to do.  I don't worry too much about him being in there alone because everyone knows Gavin and looks after him while he's there. Besides, he would have to come through one of two doors to leave and I could see both.   When he came out, he explained that everything went great and then we discussed the suckered he picked out for himself,…

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December 16, 2016