Read more about the article Being a Special Needs parent has been so heartbreaking recently
My thoughts

Being a Special Needs parent has been so heartbreaking recently

I write a great deal about being an Autism and Special Needs Parent. I've done this for close to a decade now and I don't plan on quiting anytime soon. There's a tremendous need for awareness and by sharing our story, it helps others to understand. One of the things I'm struggling with right now has to do with Gavin, my 18 year old with many serious Special Needs. His needs are both of the physical and emotional variety. The most pressing matter at the moment is in regards to his physical health. Gavin has several life threatening health problems and they are very consuming for me as a parent. Currently, Gavin has been having issues with his blood, more specifically, the cell counts in his blood. In a nutshell,…

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February 17, 2018
Read more about the article Praying I wake up to good news
Gavin / My thoughts

Praying I wake up to good news

We never got Gavin's lab results and I'm struggling with that tonight. His numbers have gone from dangerously low to sort of okay and back to dangerous in a matter of days. There's a chance it was lab error but which one was in error? Was it the sorta better results or the dangerously low results? This is the question I've been asking myself since last week. The only way to have a better idea of which is accurate is to add more data to the equation. If these results come back and his numbers are low, we know that it's likely correct. If they come back sorta okay, we know that will likely be correct. The more data points we can add, the better picture we have of what's…

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February 16, 2018
Read more about the article There’s way too much shit to worry about as a special needs parent
Clozapine / Gavin / Medication Management / My thoughts

There’s way too much shit to worry about as a special needs parent

I've been playing a very frustrating game of phone tag with the pharmacy this afternoon. I need to make sure they either look out for a fax from the lab or call and have it faxed over because Gavin needs his refill tomorrow. I cannot stress enough that Clozapine is the most tightly controlled medication in the United States for a reason. You do not fuck with this medication and it has to be taken seriously. The fucking stress that we experience simply because of this goddamn medication is inexplicable. I also reached out to his doctor and asked that they immediately email with the results of his his labs because I'd like to sleep tonight. They do that anyway but I feel better reminding them. They know how serious…

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February 15, 2018
Read more about the article Fingers crossed and prayers sent
Gavin / My thoughts

Fingers crossed and prayers sent

It's been an unexpectedly good morning. The boys got off to school without any issue and I'm now waiting for Gavin to have his labs drawn. The only other thing this morning is an appointment for Lizze. Today, I'm going to be focusing on making sure Gavin's Clozapine gets refilled tomorrow. I'm also going to be stressing out about the results of last his labs because they've been all over the place recently. Fingers crossed and prayers sent.

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February 15, 2018
Read more about the article Setting only one goal for myself today
My thoughts

Setting only one goal for myself today

The boys were supposed to have their ADHD medication check this morning. They were also supposed to be at the dentist yesterday as well. We've rescheduled both because they've missed so much school recently due to illness, we don't want them missing anymore unless it's absolutely necessary. Both appointments are rescheduled for after school hours and about a month out. While Elliott and Emmett's appointments have been cancled for today, Gavin still needs his bloodwork done. It's in the same place as the appointments we're but I feel like we made the right decision. Gavin wasn't home until after the lab was closed yesterday and I forgot to ask Lizze's Mom to take him while he was with her. Having the labs done today is cutting things a bit close…

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February 15, 2018
Read more about the article How I helped my adult son with #Autism work through a really bad day
Gavin / Inspirational Posts / My thoughts

How I helped my adult son with #Autism work through a really bad day

Today felt like a trip back in time to when Gavin was really struggling with behavioral issues. OMG did he have a rough day. He tried his best but couldn't cope well with all that went on yesterday. His Monday was thrown off because of the shift in his bloodwork schedule. That threw him for a loop and the day had only just started. When he started his IVIG infusion, both infusion sites ended up leaking and he needed to be stuck with a needle five or six times before we could get it working. His infusion going poorly sent him into a downward spiral that he would never recover from. Throughout the rest of the day he struggled with just about everything. His frustration threshold was nonexistent and he…

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February 13, 2018
Read more about the article The other shoe just dropped
Gavin / Medication Management / My thoughts

The other shoe just dropped

Anytime we get even a tiny bit of good news, deep down inside, we're waiting for the other shoe to drop. There were three things that I needed to go well today. One was Gavin's lab work, another was Ruby's appointment and finally resolving whatever is causing problems with his Clozapine prescription. I'm not sure what to think about Gavin's labs (see Why good news doesn't always make me feel better), but Ruby's appointment went well (see The first solid piece of good news this week). The last thing has to do with Gavin's meds and that brings me to the other shoe that just dropped. There was a delivery of medications this afternoon and dispite being promised they would fill it, the pharmacy still didn't have Gavin's prescription ready.…

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February 9, 2018
Read more about the article It’s too painful to talk about
Gavin / My thoughts

It’s too painful to talk about

As time goes by, I'm becoming more and more concerned about Gavin. There isn't just one thing in particular that's got my stomach in knots but rather a conglomeration of symptoms that aren't sitting good with me. He's losing his already limited problem solving skills. I just watched him struggle to figure out how to open the door while he had things in his hands. All he had to do was simply move ome item to his other hand or put it down. Instead, he stood there not knowing what to do. He did eventually fumble his way to opening the door but it was very clear that he was struggling. I wasn't being a dick by letting him struggle. It's important to know where he is and what he's…

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February 2, 2018