We've had an interesting fourth day of lockdown. For the most part, the kids are doing well. Everyone is healthy and in relatively good spirits. Thank God.
I thought I would share a bit of insight into what it's like to be a single Dad on lockdown, with three Autistic kids and one at very high risk. Here's just a few of my current challenges. They extend well beyond my worrying about food, water and provisions. It's well beyond worrying about paying my bills or even working from home.
One of the challenges I am facing, aside from the COVID19 pandemic outside my door, is that my kids are not adjusting to home learning very well. Since school work isn't optional, they have to get it done whether they want to or not.
We are currently living through the worst pandemic of the last 100 years, and anxiety is high, and the kid's ability to focus on school work is very, very low, as is my desire to pick this particular battle.
I'm trying to make sure that their work gets done, but it's a significant challenge. Frankly, I don't really see the point of schoolwork right now, but I also understand why it must be done, and so I will work to that end. It's an uphill battle but I have to at least try.
One of growing concerns is for Gavin. As you know, Gavin suffers from CVID or Common Variable Immunodeficiency. His immune system is compromised and he requires IVIG Infusions twice a week in order to not get sick. For whatever reason, his supplies never showed up this week and I can't get through to the pharmacy to find out why. It's a specialty pharmacy, so it's challenging to get through anyway.
I have no idea what's going on and of all the times that this could happen, you literally couldn't pick a worse one. Gavin is immunocompromised and we're living through a fucking pandemic. That puts him at very high risk. Now he doesn't have his medication that provides him with a temporary immune system.
In the morning, I need to get answers as to why this is happening and when it's going to be fixed. This is simply too important to let go.
To make things even more challenging, Lizze and I have been talking and we think it might be best to pull Gavin off the Clozapine. It's an insanely tightly controlled antipsychotic for the treatment of Schizophrenia. It requires blood work before each refill and there is no way around that.
Considering all that's going on around us, and Gavin being immunocompromised, I cannot justify taking him to the lab to have his blood taken, just to refill a non-lifesaving medication. I felt that way before knowing his infusion medication would be in limbo. Now I can't see putting him in that much risk. Lizze and I decided that I would speak with his doctor and find out what we should do. We're leaning towards removing the Clozapine but we're waiting to see what his doctor recommends.
If we pull Gavin off, he will physically be safer because he won't be exposed to people sitting in a crowed waiting room. There's way too much unknown there and way to many risk factors. The downside and it may be a big downside, is that he will be an unmedicated Schizophrenic, who we're on lockdown with for at least the next couple of months.
Gavin is a sweet, gentle person and his hallucinations are not usually dark or dangerous. That said, off his medication he has historically become untethered from reality very quickly and can't tell the difference between what's real and what isn't.
I have serious concerns about introducing the above, to an already massively stressed out and anxious household.
Unfortunately, at this point, I don't see any other option.
There's no question that I have my hands full right now. I'm so grateful to be able to work from home because that takes a huge load off. At the same time, it's difficult to work with the kids home all the time.
I need to focus on getting some more work done and getting more episodes recorded.
Before I can make any headway there, I need to get everyone on a new routine. Everything is pretty much chaos at the moment and I need to smooth that out with a new routine. There will absolutely be resistance to that but it needs to happen in order to move forward.
I'm seriously exhausted, depressed, overwhelmed and worried. Hopefully I'll be able to sleep tonight and see things a little more clearly in the morning.
