Read more about the article Helping my adult #autistic son find independence
Gavin / Independent Living / My thoughts

Helping my adult #autistic son find independence

Gavin is bound and determined to move out. Until recently, I hadn't really considered that to be an option but this is what he wants. As his parent, I want him to reach whatever level of independence he can achieve. With that in mind, I'm getting the ball rolling on this. The process is likely to take awhile and that's okay because I wouldn't do anything before COVID is resolved and it's safe for Gavin to pursue. I'm going to be preoccupied this week so I don't envision making any serious progress. I wanted to outline my current plan but keep in mind this is subject to change. I expect that we have a full year, at the very least, before we can really do anything. I want to make…

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February 7, 2021
Read more about the article This isn’t supposed to happen
Gavin / My thoughts

This isn’t supposed to happen

It's Gavin's 21st birthday and we were off to a good start. His IVIG Infusion supplies showed up and he immediately went to work. Whenever he gets his supplies, I've taught him to put together kits containing everything he needs for each infusion. This serves a dual purpose. It helps him to learn how to organize, maintain and keep track of these life saving supplies. The other thing it does is help to streamline the infusion process as well as helps him to take inventory when the supplies are first received. It's important to take this inventory because sometimes items are missing and he needs to let me know immediately so I can get them ordered. This morning he put his kits together and he had enough supplies for eight…

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January 18, 2021
Read more about the article Communicating with my adult #autistic son
Gavin / My thoughts

Communicating with my adult #autistic son

I've mentioned this a few times before but Gavin and I have a unique relationship. We're very very close and direct with each other. I've learned over 20 years that Gavin needs people to be very direct with him. If you give him any room to interpret the meaning in your words, he will often struggle to understand. That's just part of who he is and that's okay. From the outside, it can seem like I'm being mean but in reality, I'm not. If I used this approach with someone else, I might agree but sometimes we have to cater our approach to the needs of the person we're trying to approach. Here's an example of what I'm talking about. If Gavin is talking too much, which he's known to…

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January 10, 2021
Read more about the article My #autistic son gave himself a haircut today
Gavin / Inspirational Posts / My thoughts

My #autistic son gave himself a haircut today

I know some of you may not get how unbelievably awesome this is but I'm sure you'll be excited for Gavin nonetheless. Gavin has made it very clear that he wants to live with peers or other people his age, likely walking a similar path in life. Lizze and I have been talking about this and I feel this is a hugely positive thing, as does she. The challenge is how to navigate this and whether or not Gavin can handle it. Actually, it's more like how much independence is he capable of without serious safety concerns. Obviously, nothing can or will happen until we're in a post COVID world but that doesn't mean I can't work with Gavin to help him reach his potential while we wait. This morning,…

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December 12, 2020
Read more about the article So Gavin started running a low grade fever tonight
Gavin / My thoughts / Thoughts and Prayers

So Gavin started running a low grade fever tonight

It's been a really challenging day for about a million reasons. I was going to touch on some of those reasons but yet another issue has made itself known and this is going to be the priority until I know otherwise. Gavin is running what is a low grade fever for him. He's very much like his mother in the sense that they usually run a bit low and almost never run a fever. Lizze was notorious for having really bad strep throat but never running a fever. Gavin's always been very similar. Elliott noticed that Gavin's ears were bright red and became concerned. I'm not worried about his ears being red but to help put his concerns to rest and that of Gavin's because Elliott said something to him,…

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November 30, 2020
Read more about the article You may not know this but I adopted my oldest
Gavin / Gotcha Day / My thoughts

You may not know this but I adopted my oldest

You may not know this but I adopted my oldest. I don't talk about this a whole lot because frankly, I never really think about it anymore. The only time it's at the forefront of my mind in on October 22 of each year. As it's October 22, or will be by the time you read this, it's been on my mind. I'm not going into the whole back story because frankly, you can read that yourself. Just search the archives, it's there. ☺ On October 22, 2008, shortly after Emmett was born, I adopted Gavin. Gavin is Lizze's son from her first marriage. He was 8 years old at the time and I'd already been raising him as my own since he was about 15 months old. In a…

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October 21, 2020
Read more about the article Round 3 of blood work for Gavin
Akron Children's Hospital / Gavin / My thoughts / Pediatrics

Round 3 of blood work for Gavin

It's been a long day but a pretty good one. I didn't write yesterday cause I was not really in a place where I felt like writing. I spent the time connecting with other parents instead and that was really cool. Yesterday, I had to take Gavin for another round of blood work, this time focusing on his liver. I hate doing this because it puts us in contact with other people but it was a necessary evil. Gavin's levels have been off and we have to keep following up until we figure it out. I needed to get this done ASAP because the car goes into the bodyshop this weekend and I'll be car-less for a few weeks. Gavin has an appointment with gastro coming up and we need…

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October 3, 2020
Read more about the article It’s incredibly frustrating when the answers you get aren’t the answers you want
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