Ehlers Danlos Archives - Page 46 of 101

My 19-year-old #Autistic son totally impressed me

When Gavin was younger, he was admitted to the psych unit at Akron Children's Hospital more times than I can remember. It was always a last resort but a necessary action when things got really bad, and he needed acute stabilization. Anyway, Gavin's doing so much better now, but he's beginning to struggle once again. Most of this struggle revolves around him, managing his frustration. It's not easy for him because he's very easily frustrated and often has unrealistic expectations of himself. The other day, Gavin came downstairs and wanted to show me something. He'd been straightening up his room and came across one of his old folders from a psych stay at Akron Children's. Inside it, he found some of the work he'd done while he was there. In…

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May 20, 2019

My thoughts

There’s no chance of that happening today

I didn't sleep very well last night. I'm really feeling stressed out, and I woke up almost every hour throughout the night. My brain was just churning out endless amounts of worry, and it kept waking me up. I was able to get the boys off to school on time and then go for my walk. Ruby, of course, went along with me. When I got home, I was able to work on a little writing before having to take Lizze to an appointment before lunch. Halfway to her doctor's office, the school called, and Emmett needed to be picked up. He apparently has a very bad mouth sore and was unable to make it through the day. He almost never comes home for these anymore and the fact that…

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May 20, 2019

Cleveland Clinic / Lizze / Migraines / My thoughts / Neurological Center for Pain

What happened at the @ClevelandClinic last week?

I just realized I neglected to mention how Lizze's appointment with the Neurological Center for Pain at the Cleveland Clinic went. For starters, the staff was absolutely amazing. Not that it's a surprise, but it really is important to note that because we've had some truly awful experiences with other medical facilities in the past. The Cleveland Clinic, however, never disappoints. Anyway, as I had previously mentioned, Lizze needed to decide how to proceed with her migraine medication called Aimovig. Aimovig is a once a month autoinjector that is designed to help prevent migraines by blocking a protein thought to trigger migraines. Lizze has been on the lowest dose for about four months now (I believe) and she hasn't really noticed any improvement. If she didn't have use of her…

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May 20, 2019

My thoughts

It’s difficult to focus on anything when there are so many things that need my focus

I've said this before, but it warrants repeating. Being an Autism and Special Needs parent is not easy. I can't honestly see how anyone could claim otherwise. Maybe they're stronger than me or a better human than me. Either way, my life is an endless string of challenges, and while I do my best, I almost always fall short. It's always a struggle. I was talking with someone the other day about some of the current challenges I'm facing, and it was hard to put things into perspective for them. That's not their fault and understanding something you've not personally been through is hard for anyone. The reality is, it's very difficult to explain the complexity of the Autism and Special Needs parenting struggle to someone who isn't an Autism…

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May 19, 2019

My thoughts

It’s been a heartbreaking morning for me

It's been a rough day already, and it's not even halfway over yet. I've been sharing on Twitter about the baby bird I recused on a busy road the other day. It's all on my timeline if you're interested in the pictures and backstory. Long story short, it died last night, and the boys are devastated, especially Elliott. That sort of set the tone for the morning going forward. Shortly after I woke up, I got a call from my Grandma. She was confused, scared, and didn't know where she was. I called my Dad, and we both met at her nursing home so we could help her remember some of the things she'd forgotten. It's really rough seeing her like this and I know it's tearing my Dad apart.…

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May 18, 2019

Cleveland Clinic / Lizze / Migraines / My thoughts / Neurological Center for Pain

My wife has a difficult decision to make today

The boys got off to school in a good mood. I've got to say that was a significant accomplishment, and I definitely needed my walk this morning because I was frazzled. I will be spending the afternoon at the Cleveland Clinic with my amazing wife. She has a follow-up with her neurologist at the Neurological Center for Pain. This is in regards to her chronic migraines. Today we will decide what to do with her new migraine medication, Aimovig. She's been on it for several months now, and it doesn't seem to be doing anything. The standard approach to this is to double the dose if it's not working after a few months. Lizze is concerned that she's muddied the water because of her medical marijuana usage. I disagree because…

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May 17, 2019

Autism Parenting Struggles / Emmett John / My thoughts

Nothing says it’s going to be a terrible day quite like a massive morning #meltdown

It's not a super fun morning once again. Emmett is not in a good mood, and the whole neighborhood is likely aware of it by now. I don't know what has him so upset, but I wish I did. I hate starting the day like this because it's stressful for everyone, especially the kid in question. Emmett's not trying to be disruptive. He's teetering on the edge of a meltdown. It's like he's fighting to maintain, but whatever is causing the distress keeps pushing him towards the edge. It sucks, and it's heartbreaking because when he's like this, you can't even talk to him. We have a busy day ahead of us, and I'm hoping we can make it through this and get the boys to school on time. There's…

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May 17, 2019

Autism Parenting Struggles / Emmett John / My thoughts

Why we almost didn’t make it to school

We had a rough day in our house. It began in the morning and revolved around Emmett's new haircut. The previous night, Emmett had asked me to cut his hair really short. He said buzz cut. He's had it done in the past and loved it. Lizze was not too keen on the idea but supported it if it made Emmett happy. I cut his hair with a number five guard on, and it left his hair about one-quarter inch long. After it was done, he had buyers remorse. He flipped out and struggled even to fall asleep because he was so worried about his hair. He did eventually fall asleep and seemed to have accepted the change. However, he woke up this morning and refused to go to school…

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May 17, 2019