Read more about the article I’d rather not spend the money but I’m too tired to care
COVID19 / Lockdown / My thoughts

I’d rather not spend the money but I’m too tired to care

I had a really hard time falling asleep last night. I ended up finally crashing around 5:30 AM and for those wondering, that puts me at a significant disadvantage going into the day. I was able to get about 4 hours of sleep because the boys slept in. Super grateful for that. The goal for today is pretty simple, I want to get Gavin started using Mightier and I need to unbox something that was sent out for me to look at and share. The super annoying hangup right now is that someone a few doors down has this dog that incessantly barks and they just ignore it.. It's really hard to record anything because nothing is even remotely soundproof in my house. I've considered filing a noise complaint because…

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May 11, 2020
Read more about the article My #specialneeds #immunocompromised son is terrified by #COVID19 and afraid of dying alone
COVID19 / Gavin / IVIG Infusion / Lockdown / My thoughts

My #specialneeds #immunocompromised son is terrified by #COVID19 and afraid of dying alone

I just spent a good chunk of time trying to convince Gavin that he does not have COVID19. This is heartbreaking and becoming an ongoing struggle that's proving difficult to navigate. In case you're one of my many new readers, here's a little background on Gavin so you can put this into perspective. Gavin is 20 years old but emotionally and cognitively, he's somewhere in the neighborhood of 5 or 6 years of age. That's the best guess as to where he is developmentally. Gavin also has many health issues that render his health fragile. While they all matter, the biggest concern in regards to COVID19 is that he's significantly immunocompromised. This means his immune system doesn't function properly and in order to stay healthy, he needs to infuse a…

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May 7, 2020
Read more about the article Breaking the monotony of lockdown with some backyard fun
COVID19 / Family Fun / Lockdown / My thoughts

Breaking the monotony of lockdown with some backyard fun

The boys and I have been working on setting up a fire pit in our yard. We're cleaning out the back half, and building an area were we can spend time together and sorta feel like we're escaping all this insanity. Our first planned fire is this Friday. We have to register with the city and wait 48 hours before using it. We have some food to cook over the fire and the kids are really looking forward to seeing all their hard work pay off. It's still bittersweet because there are four seats instead of five but that's okay. We decided this would our guys spot. Maybe we'll add a fifth seat for when the pandemic is over and their friends come to visit again. I'm looking forward to…

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May 7, 2020
Read more about the article Focusing on the positive
COVID19 / Elliott / Emmett John / Lockdown / My thoughts

Focusing on the positive

There's so much going on right now and our lives are on hold in many ways. The stress is getting to all of us and it's quite common for me to hear the kids fighting throughout the day. They are so overwhemled by everything and I just don't know how to help them purge some of that stress and anxiety. Anyway, I wanted to share this because it made me so happy to see. I was working and when I realized how quiet the house was, I went to check. I wanted to make sure everything and everyone was okay. It's not a common occurance for the house to be quiet during the day. When I walked into the living room, this is what I found. Elliott and Emmett were…

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May 6, 2020
Read more about the article The biggest challenges I face with my #autistic kids on #COVID19 lockdown
COVID19 / Inspirational Posts / Lockdown / My thoughts

The biggest challenges I face with my #autistic kids on #COVID19 lockdown

I've been talking to some fantastic experts on my podcast recently. My goal is to help parents better help their kids navigate the COVID19 lockdown. The feedback thus far has been very positive and I have more interviews coming. One of the most common things that everyone is saying is essential, especially in regards to autistic kids, is routine. Routine is paramount to helping our kids feel safe, secure, and in control during these scary, uncertain times. Generally, autistic kids require a very rigid structure and a strict routine in their daily lives. I'm not going into the whys at this point, so please just accept that as fact, because it is pretty common knowledge.  COVID19 and our response to it has thrown our lives into chaos. Schools are…

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May 4, 2020
Read more about the article Safe and Healthy Is The Goal
COVID19 / Lockdown / My thoughts

Safe and Healthy Is The Goal

I kinda exhausted my writing resources today working on a new project that I'll tell you more about when I can. That being said, I committed to writing at least once a day and I'm trying to live up to that commitment. I thought I would drop a quick little update on how we're doing. Big picture, we're doing pretty good. There are many things that are major challenges right now. Those challenges don't undon the fact that we're all safe and healthy. At the end of the day, safe and healthy is the primary goal. One of the things that I wanted to acknowledge is how difficult it's been for Lizze. I don't know what goes on in her life anymore, as my contact is limited and only in…

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May 3, 2020
Read more about the article It took 56 days but it finally happened
COVID19 / Lockdown / My thoughts

It took 56 days but it finally happened

I really wish I had the energy to write more but the reality is, I don't. It's not even a close call either. I'm really trying to push myself because writing is so important to me for a million reasons but one of the biggest is that it's a form of therapy. Without writing, I tend to carry a ton of shit around that isn't healthy. My goal is to write at least once a day. I feel like that's very realistic. It's a far cry from what I used to do but it's better than giving up. I'm starting tonight, even though I'm exhausted and wanting to crash, I want to get some writing done, because I'm hoping it will help me to sleep. There were many challenges today,…

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May 2, 2020
Read more about the article Lockdown is becoming more and more challenging
COVID19 / Lockdown / My thoughts

Lockdown is becoming more and more challenging

I'm so burned out today. I did an interview this afternoon with St. Jude Children’s Research Hospital and I was a bit nervous about that. I think it went well and I should have that for you all in a couple of weeks, maybe soon. It all depends on how I manage the schedule. We're on day 52 of lockdown and it's fair to say that it getting to all of us at this point. I tried getting the kids to leave the house and while Elliott and Emmett were on board, Gavin flat out refused. We're in a situation where we all go or no one goes. There is no chance that I would leave Gavin home alone, unmedicated and in the middle of a global pandemic. I don't…

3 Comments
April 28, 2020