I love him but he’s driving me crazy

We're off to a good start this morning. The only downside is that the boys school clothes didn't dry overnight but we still have time. Gavin is really off this morning and I'm not sure what's going on with him. He's ready to go get his bloodwork done but I'm having to remind him to eat breakfast. If you know anything about Gavin is that he's extremely food motivated and never has to be reminded to eat. I need him to eat now because we won't be home again until lunchtime. I'm not in the mood to listen to him complain about being hungry, simply because he didn't eat breakfast. This is so weird because Gavin is very ridged and has to eat at certain times or he doesn't know…

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He’s 18 years old on the outside but not on the inside

Gavin's having a rough time today. He's eighteen years old now but can't be treated or managed like a typical, freshly minted adult. Unfortunately, Gavin's cognitive ability is significantly lower than his chronological age. Until we have his new NeuroPsych testing done this summer, we won't know exactly how much he's regressed since the last time he was tested, but his doctors have pinned his emotional age at around eight or nine years of age. That's a ten year difference between his developmental age and his chronological age. As he gets older, it becomes more and more obvious that he is struggling. Today he was taking out the recycling (supervised of course) and his lack of ability to problem solve was on full display. We have recycling collected in a…

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Feeling guilty because I’m frustrated with my Special Needs son

Today was full of ups and downs. If you know anything about being a special needs parent, you're likely aware that it's often a roller-coaster of emotions. Frankly, this is one of the reasons life is so hard because the ride never stops. Elliott and Emmett have been Elliott and Emmett all weekend. They're exhausting but we've managed thus far. When it comes to Gavin, that's a different story. He's really struggling and it's painfully apparent that life is not cutting him any slack. 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…

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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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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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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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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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Gavin’s not having a good day

Gavin's having a rough morning. For starters, his routine is thrown off because he's not getting his bloodwork done today. The new day for that is Wednesday's. His IVIG infusion is leaking from the left needle and that always freaks him out. It's pretty easy to fix but it's not without additional pain. It's good that he's working through it but it's not very graceful.. Lastly, and this one is driving me crazy. He has been nonstop complaining about a hang nail on his right index finger. All of the crazy things he's endured or is currently enduring, and the kid is freaking out over a hang nail. He's always been this way and they tell me it's sensory related. Back when he suffering from very serious behavioral problems, he…

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