Ehlers Danlos Archives - Page 100 of 101

Today almost didn’t happen

We have an insanely busy day ahead of us. It will begin by meeting with Emmett's teachers because he came home today and requested that we pull him from the school. I can't go into what's going on until I meet with the teachers and gain more insight. Lizze and I will leave from the school and head to the Cleveland Clinic, where we will spend the rest of the day. Lizze has a string of appointments and they begin first thing and won't finish until dinner time. It's going to be an exceptionally long day and unfortunately, these appointments aren't all in the same location which means there's going to be a good deal of driving. Things are a bit tight in the financial department at moment and trips…

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September 19, 2018

Gavin / My thoughts

I’m at my wit’s end

Gavin is checking all the boxes today in regards to being challenging. We've had one issue after another leaving Lizze and I frustrated. After the issues with his IVIG infusion this morning, Gavin was washing some dishes he needed for lunch. All of a sudden, he begins freaking out. This isn't uncommon for him and therefore we don't always react. He came out of the kitchen and began complaining and telling us that his ankle was cramping up. First of all, ankles don't cramp. That means either something else is going on or he's using the wrong words to describe it. Either way makes it difficult to figure out what's going on. As we're trying to talk to him about it, he's getting more and more worked up. Keep in…

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September 18, 2018

Autism Parenting Struggles / Gavin / IVIG Infusion / My thoughts

He lacks commonsense and that’s why this happened

Gavin had a very rough morning. He was struggling and that was even more apparent when it came to his IVIG infusion. I'm not sure where his head was at but we had problems. Maybe he was distracted, preoccupied with thinking about one of his games or perhaps he had a pending mission on his mind. I don't know and I don't think he does either. After dropping the boys off at school, I went walking in the rain. It wasn't too bad but getting wet is getting wet. Anyway, while I was gone, Gavin was preparing his IVIG infusion. He does this every single Monday and Friday morning. Today however, something was different. It's like he was backwards in what he was doing. He opened the supplies, kept the…

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September 17, 2018

Autism Parenting Insight / Emmett John / Meltdowns / My thoughts

Meltdowns and mayhem led to an incrediblely touching gesture

This morning has been a total disaster. Mr. Emmett woke up in a mood that can only be described as unfortunate. He woke up at one point last night and wanted to crawl into our bed but we got him back into his instead. Maybe he had nightmares again and that's what had him in such a horrible, outwardly aggressive mood. Elliott and Gavin were both the targets of Emmett's verbal wrath at one point or another. Both seemed to understand that Emmett was having a rough time and didn't react in a retaliatory manner. Very proud of them for that. I intervened, correcting Emmett when he lashed out but as most Autism parents can relate to, it's a very fine line between correcting behavior and escalating an already volatile…

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September 17, 2018

Link / My thoughts / Reviews

Review: The NEW Link View Smart Display by @JBLaudio takes Google Home to the next level

Straightforward and intuitive, the Link View is something that can benefit any family. The benefits are numerous and range from filling a room with music to helping kids with their homework.

5 Comments

September 16, 2018

Autism Parenting Insight / My thoughts / Self-Care

Self-care isn’t always easy but it’s absolutely possible and here are some ideas

I'm super proud of myself because after today's walk, I have already hit 40 miles for the month. In other words, over the last 16 days, I have walked 40 miles on the track. That doesn't including walking in general. That's specifically from me driving to the park, starting my Galaxy Watch and stopping it when I'm done. For me personally, that's pretty fricking amazing and I've come a long way. I haven't made anymore progress on my weightloss since my last weigh-in but I'm still at 305 lbs +/- 1 lb. That's a 35 lb weightloss in roughly the last 6 months. ☺ I'm feeling pretty good about myself because self-care when you're an Autism parent can be exceptionally challenging. I'm really pushing myself to focus on this and…

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September 16, 2018

My thoughts

My resources were completely depleted

I don't think Lizze ever fell asleep last night. Maybe I let her sleep too long yesterday afternoon but she needed the rest. I just woke up and my back is feeling a little better and my stress level has come back down a bit. There aren't any plans that I'm aware of today but as long as Lizze is doing okay, I'm going to sneak out and go walking, because I'm doing really good this month. I've gone 17 times in the last 16 days. If I keep this pace up through the end of the month, I will have walked 80 miles in the month of September. That's truly an awesome accomplishment for me. Anyway, aside from that, I need to grab a few things for this weeks…

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September 16, 2018

Depression Confessions / My thoughts

#Depression makes it worse

As the day has gone on, my stress level has steadily increased. The boys are in bed and sleeping. They need their rest after a long day. Lizze and I are watching Jack Ryan on Amazon but I think I'm done for the night. My stress level is at a point where my left eye has been twitching so much that I have a tension headache. I'm overwhelmed, worried and have way too much on my plate at the moment. When I get to this point, my ability to cope is severely impaired. This is when I can feel the out stretched arms of depression reaching out for me. I don't know how to describe it. It's like on most days I can keep my depression at bay. When I…

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September 16, 2018