I’m feeling utterly defeated and desperately needing to catch a break

I'm feeling incredibly defeated today and there's a number of legitimate reasons for that. It's important to put things into context so here's a but of background. Life is tough for my family on a good day. Including myself, there are five people in my immediate family, and four have special needs. All four are in various places on the Autism Spectrum. Three struggle with serious anxiety that impacts their daily life. Three have ADHD. Three have serious sensory processing challenges that interfere with their daily life. Two have asthma. One has food allergies. One struggles with a very rare fever disorder. One struggles with Schizophrenia, Childhood Disintegrative Disorder, significant cognitive impairment, Common Variable Immunodeficiency, an extremely rare Autonomic disorder, epilepsy, neuromuscular issues, a blood disorder, Ehlers-Danlos (possibly vascular) and…

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We’re losing my Grandfather

I got up this morning and headed to my parents house to sit with my grandpa. It sucks watching someone slowly pass away but if I have to find a silver lining, it would be that I'm reconnecting with cousins I've not seen in a very long time. As awful as all of this is, it's brought all of us together. When my grandmother passed away, over ten years ago, we just sorta drifted apart. It was really nice to see everyone that I've not seen in a really long time. Anyway, the boys are with Lizze's parents for right now. Lizze is now home, trying to hide from all forms of light. Her migraine woke her up very early this morning and has been relentless today. I'm spending as…

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We’re just going to have to adapt today

We're having to adapt to a relatively fluid situation today. The original plan for the day was straightforward and simple. All I had to do was take Elliott to his appointment with behavioral health at Akron Children's Hospital. After that, we had family therapy. I mentioned in a previous post that my grandfather has been placed in hospice and we're not looking at a great deal of time. I need to be available today to help my Mom with whatever she may need. I'm unable to be in two places at the same time so we've made alternate arrangements for Elliott's appointment. Lizze and her Mom will take Elliott to his appointment. Gavin and Emmett were originally going to go with them. Unfortunately, Emmett woke up this morning in a…

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A rough start to the new year

I welcomed the new year alone and battling insomnia. Lizze pooped out about 9 PM, shortly after the boys went to bed. It wasn't exactly how I wanted to ring in the new year but there were reasons why I was okay with it. Lizze going to bed at 9 PM, when we had plans to celebrate the new year together could sorta be annoying. Unfortunately, she's been struggling with sleep lately and working hard to get back on a healthy sleep cycle. Her falling asleep at 9 PM is a very positive thing and frankly, it's a massive relief to know she's actually getting sleep, when she should be getting sleep. I watched a few episodes of Supernatural and did some writing. Sleep eluded me for a couple of…

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2018 has been a mixed bag for my #Autism family but we’re grateful for every moment

As I'm writing this, there's only a few more hours left in 2018. As the new year has gotten closer, I've been reflecting on some of the things that have happened this year. It's been a mixed bag for sure but I'd like to think that 2018 was better than 2017, and in many ways it was. There have been moments of heartache and loss as we've said goodbye to loved ones who've passed on. A few hours ago, I got off the phone with my mother, who informed me that hospice has been called in for my grandfather. He's been living with my parents for awhile now and we've known this moment was coming but I'm not ready, not that anyone ever is. 😔 We've had several major health…

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I’m disappointed

I'm really disappointed because I was really hoping to go walking and end the year strong. Unfortunately, it's pouring down rain and it's only 40°F. It's a bit too cold to walk in this much rain. On the positive side, I've already far exceeded my goal of 200,000 steps for the month and that's ultimately where I need to be. I'm disappointed but I'm moving forward because there's nothing I can do about it. Rather than let it ruin my day, I'm going to let things happen as they will and not let it get me down. I've made serious progress this year and one day won't make a difference. ☺

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We haven’t had a fully working stove for almost a decade

This is intended to be a very quick update to something I shared late last week. Just to get everyone on the same page quickly, I'll remind you what was going on. It's been the better part of a decade since we've had a fully working stove. The oven, along with two of the four burners hadn't worked in about ten years. With everything else we had going and with money being tight, it was just something we never were able replace. We have been using a toaster over, air fryer, microwave, crock pot and more recently a pressure cooker to work around our problem. It wasn't perfect but it worked. Anyway, for Christmas this year, my parents surprised us with a brand new gas range. We were able to…

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Things don’t always go as planned but we make do as best we can

One of the big things I've learned over the years is that things are not always going to go as planned, especially with four Autistic people living under one roof. We often find ourselves living minute to minute because there's simply so many variables in play that there's literally no way to plan for anything. As a family, we've all had to learn to adapt and change when needed because sometimes that's necessary for survival. It's really important that we don't allow sudden change to throw us too far off course. Some of us deal with change and unpredictability better than others but we all help each other when needed and we continue to move forward as a family. For those who are unaware, people with Autism tend to not…

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