Ehlers Danlos Archives - Page 89 of 101

Autism Parenting Struggles / My thoughts

I’m so tired

The boys and I went to therapy tonight. Lizze was not feeling well and has been sleeping. I brought Dr. Pattie up to speed on the boys and we spent some time helping them work through some of the issues they we're having while we were there. It's absolutely exhausting because I'm trying to manage everything and it never stops or even slows down. Lizze struggling with her health and that puts a disproportionate amount of responsibility on my shoulders, which is okay but it takes its toll. I don't mean to sound like I'm complaining, even though I'm sure it sounds otherwise. The reality is that things are pretty rough. I'm trying to work, help everyone with everything they need, manage the house and the rest of our life.…

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October 23, 2018

Gavin / My thoughts / Schizophrenia

He’s still hearing voices he doesn’t recognize

Despite everything that's currently causing me distress, I feel like I'm actually doing pretty good. All things considered, I'm in a decent mood and that's half the battle sometimes. ☺ Gavin is in a good mood this morning as well. Unfortunately, he's also continuing to struggle at the same time. He's very clearly hearing voices that he doesn't recognize because it seems like every 5 minutes, he's popping his head out of his bedroom and asking if we had just called him. I say it's a voice or voices he doesn't recognize because Gavin always hears voices. Aside from being Autistic, he's also Schizophrenic. He lives in this elaborate world where he's a super hero in charge of a group of superheros. They're always going on missions to save the…

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October 23, 2018

Link / My thoughts

More information on the storm damage to our house arrived and it looks like we’re up a creek without a paddle

Things are looking worse and worse in regards to our homeowners claim for the storm damage from a few weeks back. I got the estimate for the cut-up and removal of the tree this afternoon. Putting everything into perspective here for a second, we have a minimum of $1,700 worth of repairs to fix the physical damage to the house and we're looking about $1,500 to remove the tree. That's a minimum of $3,200 total and likely a bit more because they haven't been able to ladder the house in order to fully inspect the giant hole in the outside wall, exposing the attic. Anyway, right now, the total insurance payout is about $1,032. The math isn't looking good for us. Once we get the tree removed, insurance will come…

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October 23, 2018

Link / My thoughts

We have to get the tree removed and our house fixed

It's Monday and while I'm not looking to tempt fate here, I need to get a few things done today. Mondays aren't historically fun in my house for a number of reasons. The main reason being that the kids have to transition from being home to going back to school and that doesn't always go well. Anyway, I need to get a few things done today. I have some writing that needs to get done and published before an upcoming deadline. It's not hard but it's really important and a little overwhelming, if I'm being honest. The biggest thing that needs done today is getting someone out here to give a quote on getting this tree the hell out of my yard. I made arrangements to have a very popular…

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October 22, 2018

Autism Parenting Confessions / My thoughts

It really sucks when you have to put groceries back because you don’t have enough money

It's been a rough day in general. The highlight has been my 3.1 mile walk. I've walked every single day for the last 2 months and I'd like to maintain that record as much as I can. Anyway, that was the upside. The rest of the day has been a bit on the unpleasant side. Gavin's driving me nuts with his talking, while Elliott and Emmett are fighting over everything. I'm overwhelmed by life right now and it all sorta came to a head this afternoon while I was running errands. After walking, I had to hit the grocery store, gas station and Little Ceasars. Elliott needed pizza for his school lunches because it's the only thing he will eat. We need gas to get the kids to school in…

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October 21, 2018

Autism Parenting Confessions / Gavin / My thoughts

This #Autism Dad is not coping well with the incessant talking today

There are so many things that can be frustrating and/or overwhelming when it comes to being an Autism/Special Needs Parent. Most of them are things that I've had to learn to either ignore or cope with in some other way. If I didn't, I'd lose my mind. I have days where I can cope fairly well but there are also days that I seriously struggle. On any given day, one of the hardest things for me to cope with is incessant talking. I'm fully aware that many parents have never heard their child talk and I have some experience in that arena with Emmett. My heart goes out to them. I'm not intending to be insensitive to that and I'm incredibly grateful that my kids are verbal. The reality I…

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October 21, 2018

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

How the @clevelandclinic gave us hope

It's been a couple of days and I've still not gotten around to updating you on Lizze's appointment at the Cleveland Clinic. As a quick reminder, she was at the Neurological Center for Pain, seeking help for her migraines. Lizze went into this appointment with very, very low expectations because for the most part, she's without hope that she will ever live a day without pain. I get where she's coming from and it breaks my heart to see her go through this. That said, I'm carrying the touch in regards to hope because I cannot accept a reality in which she can't find relief from her migraine. She deserves to exist without pain and I will keep working towards that end. We arrived a bit early but only had…

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October 21, 2018

Autism Parenting Insight / Emmett John / My thoughts

Emmett had a great time

Emmett had an amazing time at his friend's birthday party today. It was at Chuck E Cheese and while it's not very adult friendly, the kids loved it. ☺ I hung out the entire time and met some the parents. They were all super nice and it helped to offset the fact it was at Chuck E Cheese.. Lol This is a not a sensory friendly place by any stretch of the imagination. I know Emmett will likely experience some fallout but at least he had fun. I don't have sensory processing disorder and it's overwhelming for me. I can only imagine what it's like for those that do. Anyway, it was largely positive experience and we need more of those in our life. ☺

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October 20, 2018