I’m going to be straight with you guys because the only way I can help is to be honest and transparent. With that being said, Gavin’s driving me crazy. He’s requiring more and more effort as time goes on. I know that sounds bad but let me explain.
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,…
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…
Things are looking good going into another four day weekend. Yup, that's right. Another four day weekend is upon us. Lizze isn't feeling well but it's because of the weather and fibromyalgia. Thank God we don't seem to have flu or anything like that going around. I don't mean to minimize what she's going through because she's absolutely miserable. I was just clarifing that it's nothing contagious. Fibromyalgia is a bitch and it's hard to wrap your brain around something that can't be seen or quantifed. I assure you, the pain is real, even if you can see it with your eyes. The boys and I are going to bathe the ferrets tonight and clean out their pen. Emmett's super excited because we have a new shampoo to use. Whatever…
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…
It was a weird day. The boys made it through the day at school and my Mom picked them up at the end of the day. She was going to take them both to dinner and then to hang out. On the way to her house, Elliott called and wanted to come home because Emmett was driving him crazy. He wanted a break and we of course, welcomed him home with open arms. Gavin arrived home a little while later after spending a day and a half at Lizze's parents. He had a great time but it was good to have him home. ☺ A little before dinner, I was inspired to finish a project that needed to be done. We had recently lost most of the fish in our…
This morning was a bit on the rougher side of shitty. Emmett really struggled with his stomach and was extremely upset because he didn't feel good but he also didn't want to miss school. He struggled with this so much that he ended up melting down. We decided to have him stay home because he truly wasn't feeling well and maybe we could get him to school a bit later in the day. I took Elliott to school but stopped at Walgreens because he decided at the last minute that he wanted to bring Valentines to school. While I was there, Lizze called and said Emmett basically wanted to try going to school. We turned around and claimed Emmett before making our way to the school. It's important to understand…
During therapy tonight, we spoke with Emmett about his tummy aches. He wasn't super forthcoming, which doesn't surprise me. We asked him if anything was bothering him because sometimes that can cause a tummy ache. The way we word things is critical to communicating with Emmett. He's so incredibly literal, it's very difficult to talk to him sometimes. By sometimes, I really mean most of the time. It's one of the things that makes Emmett, Emmett. Over the years we've figured out ways to work around these obstacles when we can't work through them. Unfortunately, if there's even the slightest emotional charge to a conversation, it's often a lost cause. It's becomes a live to fight another day kinda thing. When we spoke with him tonight, Lizze, myself and Dr.…