Blog - Page 64 of 1611

What kind of person shames a special needs parent?

Shaming special needs parents is not okay. It's not. I want to take a moment before we get into this I want to briefly talk about the shaming of special needs parents. Frankly, this applies to any parent but right now, I'm reaching out to special needs parents in particular because this is something we endure on the regular basis. People can be assholes. No one has the right to shame you. Most people have no clue what your life is like or the challenges you face every single day. These mean spirited, ignorant, and hateful people couldn't fill your shoes, let alone a mile in them. I hear from parents all the time who are dealing with judgment, ridicule, and shaming. It's heartbreaking and I know how hard it…

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October 1, 2020

My thoughts

We turned our @nanoleaf panels into a father/son project

One thing being on lockdown for 209 days has showed me is that I can do better at making the best of what we have. It's no secret that none of us like where we live. I've not tried to hide the fact that we live in a bad neighborhood or that my kids and I desperately need to move. Living in this situation, while dealing with everything else has been been very challenging, especially since becoming a single father. As a result, I'm guilty of not putting as much effort as I could into making our home a more usable, comfortable place for both myself and my kids. That's on me. Being stuck in the house for as long as we have been has made it very clear that…

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September 30, 2020

My thoughts

For fuck’s sake, enough with the judgement already

We had a pretty good day. Emmett had a rough start and missed his first class of the day but recovered and did fantastic. Elliott did awesome as well. Unfortunately, he's experiencing some technical difficulties with the connection to the school but their tech support is looking into it. Tomorrow is an offline day for Emmett, meaning he doesn't have any live online classes but he uses the time to work on his school work and cna meet with his teachers should he need extra help. Okay, I'm going to stop here because I feel there are some things that need to be addressed. I have my share of trolls and I've been trying to let most of the comments stand lately but sometimes, they're so mean spirited that I…

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September 28, 2020

My thoughts

A slight hiccup to the start of our day

First of all, I love waking up in the morning with my balcony door wide open. The morning sun shines right in and it's just a good start to the day. I've not been sleeping well lately and getting up in time to get the kids to school isn't easy. On this particular morning, Mr. Emmett is under the weather. He's dealing with nausea and I think it's due in part to post nasal drip, with a heaping helping of stress on the side. Anyway, he's struggling a bit and I called him off from his first class this morning. I'm hoping that a slower start will help him work through this and get back to school in time for his second class. I got him setup on my bed…

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September 28, 2020

Link / Major Update / My thoughts

A Ginormous Update

Alright folks, I'm playing catchup here and this will be a rather large update. So buckle up, it's a couple pages. First things first, I feel like we had a pretty decent weekend. The boys had a great visit with their mom and aside from a few hiccups with Gavin related behaviors, it seems like a very positive experience. That's awesome. They adjusted to being home in short order and picked up life where they'd left off before their trip. We spent some time working on the house. The boys want to bolster our security, as do I, because of all the recent shootings in our neighborhood. Just the other night, there were three woman shot while they were sitting on their front porch. I heard the shots but didn't…

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September 27, 2020

Gavin / My thoughts / Probably Genetic

It’s incredibly frustrating when the answers you get aren’t the answers you want

I met with Gavin's genetic counselor this afternoon, to go over the results of his exome sequencing. This has been a long time in the making I want to give a huge shout out to Probably Genetic for all their help. Essentially, what I learned is that we really didn't learn a whole lot. I say that because we didn't find answers to the many questions we've had for a very long time. That happens and it's for one of two reasons. The first reason being that there's nothing wrong and the second being that science simply hasn't identified everything yet. There are limits to our scientific knowledge but as that knowledge expands, answers may appear as the data is reinterpreted. When I say we didn't learn anything, that's not…

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September 26, 2020

Gavin / My thoughts / Probably Genetic

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