I hope this helps people to A) realize they aren't alone in their struggle, if they feel that way currently and B) to better understand what goes into making decisions that on the surface may not make sense to them. Autism parenting is very difficult and the decisions we are tasked with making can be even moreso. Feel free to share this with anyone who will benefit. Every share helps. ☺
As an Autism parent, life is exceptionally stressful and that's on the good days. When things in life get rocky, for whatever reason, my body and mind simply want to shutdown. It's a self-preservation thing and unfortunately, being an Autism Parent doesn't leave a whole lot of room for shutting down. There are challenges in our everyday lives that I simply haven't been able to overcome and sometimes, that knowledge weighs heavier on me. I turn forty in August and I'm almost compulsively evaluating my life. There are things that I've accepted will never happen and things that need to happen, regardless of the challenge involved. I'm okay with the things I've accepted won't happen but I struggle with the things I've failed to yet accomplish. I'm not sleeping or…
Sometimes I share my experience with Vivint Gives Back in regards to helping prevent wandering. There's also another side to our Vivint Smart Home System, provided to my family, and that's security. We live in a neighborhood that has on countless occasions, proved itself to be very unsafe. We've been involved in drive by shootings, people have been stabbed in front of our house and we hear gunshots almost every single day. Our car was just recently broken into again as well. It gets scary, especially for the kids. As summer approaches, we are working on some commonsense safety measures (that I'm not getting any into in this particular post) but aside from commonsense, we rely heavily on our Vivint Smart Home System to help keep us safe. We have…
Something Gavin brought up during his visit with Dr. Moodley in Pediatric Neurology, had nothing to do with why he was there. Dr. Moodley was trying to involve Gavin in as much of his health care as was possible. Clearly it's not possible but I like that he tried anyway. When asked if there was anything bothering him, meaning anything Dr. Moodley deals with, not just anything, Gavin replied with an answer that has me worried. One of the things that we have to be very careful with in regards to Gavin being Schizophrenic, is watching for signs of paronoia. The only step beyond Schizophrenia is Paronoid Schizophrenia. That's not a good step at all for those keeping track. Gavin's never really shown signs of paronoia, at least consistently enough…
I don't write much about Lizze, but not because there isn't anything to say or I don't want to talk about her. She has her own blog where she likes to share her own story and I totally respect that. Sometimes however, it's important to say something anyway because she plays an invaluable role in our daily lives and does so while facing significant challenges of her own. For those that aren't aware or maybe need a reminder, Lizze lives with severe chronic pain. She's lived this way for countless years now and it absolutely takes a toll on her. She's struggled with migraines for most of her life and was officially diagnosed with Fibromyalgia, after extensive testing back in 2005. She recently described her pain by saying that every…
This is a interesting story that involves Emmett, his teachers and a six month old homework packet. The other day, one of Emmett's teachers approached me right before school let out because she wanted to give me a heads up in regards to a conversation she'd had with Emmett that day. She knows how Emmett struggles with communicating in certain situations and wanted me to know first hand, what happened so Lizze and I could reassure him if need be. Back in January of this year, Emmett missed a bunch of school do to illness. There was a ton of makeup work and somehow, one of his packets never got turned in. All she did was ask him if he knew where it was and he told her it was…
We had to make our way to the Cleveland Clinic yesterday for a Pediatric Neurology appointment. Gavin had a follow-up in regards to epilepsy and autonomic dysfunction. I already shared the results of his Orthostatic testing but you can find those here. Overall, his appointment went really well. We talked about our concerns in regards to his endoscopy and colonoscopy. Dr. Moodley doesn't have any overt concerns in regards Gavin being sedated. As long as his vitals are closely monitored and he has an IV established, there isn't too much to worry about. If Gavin wasn't as physically stable as he's been, than it might be a different story but it's been years since he's had a major crisis. As for his EEG, it was mostly normal as well. There…
I have a much larger update planned but for the moment, I wanted to let you know how Gavin's orthostatic testing went at the Cleveland Clinic yesterday. Whenever Gavin see his neurologist at the Cleveland Clinic, they have to do orthostatic testing because he has autonomic dysfunction.. Orthostatic testing is simply taking his vitals but doing so while he's physically in different positions. The point is to see how his body physically responds to changing positions. In a normal, healthy person, there shouldn't be much difference between vitals taken while lying down and standing up. Orthostatic Testing Results: Lying Down 114/68 HR 99 Standing Up 118/77 HR 121 These results are considered to be mostly normal and that's a very good thing.. ☺