My thoughts Archives - Page 56 of 1480

I can’t stress how important this is

I have a meeting tomorrow that's 15 years in the making. This week, I received an email from Probably Genetic, informing me that Gavin's genetic testing results have come in. The report I received explains that there was a one mutation identified but I don't have the expertise to fully or even partly understand what it means. It does appear to have something to do with electrical activity and his heart. Genetic counseling will provide a great deal of insights and explanation of everything. I have a video conference in the afternoon where I'll get whatever information is I can, digest it, talk to Lizze and figure out what to do. This is the first time in 15 years that we have found something on a genetic level and hopefully,…

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September 24, 2020

My thoughts

It’s a big day for my kids

The boys are leaving to spend a couple days with their mom. It's been a couple months since they've been able to have actual, physical contact, due to COVID. In fact, they've only been able to visit two times since the March 5th, this being the third. It's been hard on everyone but Lizze and I decided at the onset of COVID that the priority must always be safety. There are people at high risk in both our houses and that has to be taken seriously. Agree or disagree, it's what we feel is best at this time. Anyway, Lizze and her household have just finished up a fourteen day quarantine and I'll be dropping the boys off in a little while. They wanted to schedule the drop off after…

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September 23, 2020

Gallery / My thoughts

I think he’s out of shits to give

I've been noticing a behavioral change in Gavin and I feel comfortable saying that it began during COVID lockdown. I've stated that Gavin’s been doing really well and that's absolutely the case. What I'm writing about today is more annoying, disruptive, and a bit curious than anything else. Here's what's happening. Gavin startles very easily and I mean very easily. That's not a problem in and of itself. The issue is that when he's startled, he now screams at the top of his lungs, and sometimes falls out of his seat or throws whatever is in his hands into the air. This happens across the board. He doesn't watch things that are even remotely scary. Tonight, Emmett was playing the Xbox and he was looking around a room. When he…

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September 21, 2020

My thoughts

My kids visit their mom this week and I have nothing planned for myself

I took the kids hiking today. We found a new trail, where we don't run into anyone else, which is why we don't have masks on in the picture. We had our masks with us in case we came across other humans but we didn't. The kids are going to see their mom this week and I don't think they could be any more excited. Assuming everyone is still healthy, the kids will go to school on Wednesday and I'll drop them off around 2pm. I have absolutely nothing planned for my time while the kids are gone. It would be ideal for me to have a list of things I want to accomplish but the reality is that I don't get breaks very often right now. The kids will…

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September 20, 2020

COVID19 / Emmett John / Lockdown / My thoughts

Shoe shopping online for my #autistic son

Let me just start by saying that I hate shoe shopping for Emmett, even in the most perfect of circumstances. I love Emmett to the moon and back. The issue is not that I don't want to spend the time or money, it's that sensory processing disorder makes finding things like shoes, socks and clothes difficult at times. Although, as he gets older, he's doing so much better. It can still be frustrating though, for both of us. I've talked about this a million times before but people suffering from SPD, and I use the word suffering on purpose, face challenges that the rest of us can't even imagine. In Emmett's case, he's very sensitive to things like texture, taste and smell. He doesn't like the feeling of clothes on…

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September 20, 2020

Akron Children's Hospital / Gastroenterology / Gavin / My thoughts

Gavin keeps losing weight

I've not talked about this in a while but as it's become a problem once again, it's time. Gavin is losing weight after maintaining for a most of the year. He's not losing crazy amounts of weight but he's lost all he's gained. We have an upcoming GI appointment and we're going to discuss the issues with his current labs (Bilirubin) and what, if anything we need to do. This will be done remotely since the labs were already done and it will be safer for Gavin. For his entire life, gaining weight has always been a problem. For much of this year, he was maintaining at 140 lbs and today he's down to 130 lbs. This wasn't overnight but it's where we are today. We've been tracking this forever…

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September 19, 2020

Inspirational Posts / My thoughts

Therapy is helping me become better

I had therapy yesterday and I feel like I'm making progress. I'm the picture of imperfection and I'm the first to admit that but the last to forgive myself for it. This last year has been incredibly challenging for me and that came after the hardest six months of my life. Losing my last two grandparents was so hard and I hadn't yet found my footing when my marriage imploded for a second time. That began a journey I didn't ask to go one but it was something I had no control over. Ensuring the kids got through all this has been my number one priority and honestly, that came at my own expense. Then COVID hit and our lives were turned upside down once again, just like everyone else.…

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September 17, 2020

Elliott / Emmett John / My thoughts

My kids cooked me dinner and I’m blown away

One of the things we've been working on during lockdown is life skills. I try to make the best use of all the time we have available to us and it's paying off. First of all, while Elliott and Emmett are both on the autism spectrum, they're incredibly high functioning. Aside from anxiety, SPD and ADHD, they do very well. The reason I point that out is because when I work on life skills, there's a difference between the way I approach the boys and the way I approach Gavin. They're two very different situations. For the last few weeks, Elliott and Emmett have been learning to cook. They never really showed much interest until recently and have picked it up very quickly. Elliott's big thing is scrambled eggs and…

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September 16, 2020