childhood disintegrative disorder Archives - Page 176 of 276

I’m losing my son to Childhood Disintegrative Disorder

This was a very difficult video to record. I did my best to hold it together but talking about Childhood Disintegrative Disorder and how it's impacted my oldest son, Gavin, is incredibly painful. CDD is a very rare and regressive form of Autism. A child will develop typically, hitting appropriate milestones and then one day, around the age of 4, everything changes. You can read more about CDD here: https://en.wikipedia.org/wiki/Childhood_disintegrative_disorder https://youtu.be/ac-TKjVm8x8

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May 31, 2018

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

We’ve arrived at @AkronChildrens Hospital for pre-testing

It's not even 7AM and we're sitting in the lobby of the surgery wing on the 4th floor of Akron Children's Hospital. This is an appointment that we're a bit nervous about because we aren't sure how Gavin's going to react. The whole point is to go over the details of his upcoming scopes, make sure we understand everything and discuss any concerns. It should be pretty simple. We go over everything in great detail, have a basic health screening and gain a better understanding of what to expect on June 5th. We're a bit nervous because Gavin tends to frighten easily and let's face it, who actually likes the idea of getting an endoscopy or colonoscopy? We also aren't sure how this will go as Gavin is 18 years…

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May 31, 2018

Gavin / My thoughts

I totally need to sleep tonight

I'm going to bed early because we're starting our day at 5AM. It's going to be a long morning and I'm not sure how it's going to go. I haven't been sleeping well and I'm hoping to get enough to make battling traffic something I can handle. lol The boys are at my parents house tonight and we'll pick them up on the way home. Hopefully, everything will go well and we can move on with the rest of the week.

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May 31, 2018

Autism Parenting Insight / Gavin / My thoughts

We overcame one of the challenges in regards to Gavin turning 18

We were able to reconnect with Gavin's MyChart account this week. When he turned 18 this past January, his account was closed and he needed to open up a new one. MyChart, for those unfamiliar with it, is an app that connects you with places like the Cleveland Clinic and Akron Children's Hospital. It gives you access to your medical records and future appointments. You can request prescription refills and even schedule an appointment or send a message to your doctor. It's pretty amazing. When I set this up for all three of the boys, I had access to all three under one account. As a parent, this is very, very helpful and like I said, when Gavin turned 18, he automatically dropped off. Getting account access back is complicated…

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May 30, 2018

Autism Parenting Struggles / Gavin / My thoughts

Even if we had the power, would it give us the right?

We have a conundrum and aren't sure what the right thing to do is. In less than 24 hours, we return to Akron Children's Hospital for pre-testing and consultation in regards to Gavin's endoscopy and colonoscopy, which is a bit more complicated because of Gavin's health issues. At this point in time, Gavin either doesn't know or doesn't remember that he's having these done in June 5th. When we arrive at Akron Children's Hospital tomorrow for the meeting, we're going to be going over in great detail, all that's going to transpire. Our concern is that Gavin is going to freak out. For an average person, these things can be scary but for an 18 year old with the mind of a 6 year old, it could end up being…

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May 30, 2018

Autism Parenting Confessions / Gavin / My thoughts

The best I can do is always be there for him

It's been a long and exhausting day. Gavin has been struggling a bit and I have to tell you, as frustrating as his behaviors are for me, the most overwhelming emotion I feel is heartbreak. Gavin drives me completely bonkers. I'm not ashamed to admit that and I own it 100%. At the same time, it's heartbreaking to watch him devolve to where he is, especially knowing there's nothing I can do to stop it. As his parents, we love him unconditionally, as we do his brothers. There's nothing he can do that will ever change that. Sure, he drives me crazy but he doesn't have the market cornered on driving me crazy, his brothers do a decent job of that in their own way. Having to watch someone you…

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May 30, 2018

Akron Children's Hospital / Gallery / Gavin / My thoughts / Radiology

Gavin’s had an Upper GI at @AkronChildrens Hospital this morning

Gavin's appointment went really well. I mean, we don't know the results but Gavin physically did pretty good. He could follow directions and it took a little bit because they had to make more stuff for him to drink. I can't say enough positive things about how nice everyone was. They were very patient and not that I need to explain to anyone because it's painfully obvious, but they recognized his cognitive impairments and handled him very well. We don't know the results but we'll get them at his next follow-up. If there's a major issue, they'll call us first.. Thank you Akron Children's Hospital, you've never let us down and always treated us with respect. [foogallery id="80856"]

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May 29, 2018

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

Wish us luck

We're getting ready to leave for Akron Children's Hospital after a night of little sleep. Lizze and I have both been dealing with insomnia recently and it's making life even harder than it already is. I'm not sure what's causing our sleep disturbances but I bet you a shiny buffalo nickle that it has to do with stress. We are both extended about as far as we physically and emotionally can be. In fact, we're significantly over extended. Lizze can fall asleep but won't stay asleep and I can't fall asleep but will stay asleep, if that makes any sense. Anyway, we're both exhausted and exceptionally grateful that her parents volunteered to keep Elliott and Emmett overnight so we can get Gavin's testing done without having to worry about the…

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May 29, 2018