In honor of Autism Awareness month I thought I would revisit some older posts. I think these are very relevant and I hope it gives you a better understanding of what losing a child to Autism feels like, at least from my perspective. In my situation my oldest son Gavin developed "typically". He later regressed into the world he now lives in. Many people won't understand this but some of you will know exactly what I'm talking about. I realize this doesn't apply to everyone but it does to my family. --------------------------------------------------------------------------- I hate autism. I hate everything about it. My kids are not autism. I hate autism for doing to them, to us what it has done. Autism is a thief. It's a coward. It sneaks in and steals our kids…

Trying to describe what it feels like to lose a child to the regressive form of Autism is impossible. I know that most people won't understand when I say "it's like Gavin died" but that's exactly what it feels like. Gavin was born typical and then one day a switch was flipped and the Gavin we had known and loved for the first 3 or 4 years of his life was gone. I don't think there is any way to describe the grief I feel every single day. Everything we had planned on and wanted for him faded away into nothing. The hardest part is seeing him every day and knowing that he's no longer who he was. Not many people will understand but it is the reality I live in. Danny Gokey…

Was up early with Emmett and got Elliott off to school on time. Lizze called Gavin off of school because of his appointments today. We have Dr. R today and then we are off to Akron Children's Hospital to the cardiologist. After that I have to get Elliott and bring him home. Then it's off to Dr. Patti tonight for Gavin's therapy. So we have several Autism related appointments, 1 cardiac and 1 "other" mental health appointment. They are condensed in to "only" 3 separate appointments. More to come...... Posted to WordPress via Autism Aware and midNIGHT ROM powered Epic 4G

Autism complicates everything for my family. Gavin is by far the complex child we have. By complex I mean he has the most difficult issues to deal with. Here's the latest example. Gavin has a history of chest pain. We've had him checked out many times and everything is always ok. The reason for the concern is that on his biological father's side of the family there is a history of spontaneous aortic ruptures or tears. Gavin's biological aunt died recently during child birth and she was barely 30 years old. Gavin's biological has heart related issues as well. We only have bits and pieces of information because they no longer have contact with us and even when they did they wouldnt tell us. So the concern is for good…

Emmett and I took Lizze to pain management yesterday. Lizze is in to much pain to drive much lately and we would rather not take any chances. She had a regular follow up and med check yesterday. She also talked to them about her leg pain and they said that it was "most likely" fibro related. The only thing we can do is Max her out on the Lyrica she takes to help manage the pain. That scares me for two reasons. The first is that if/when they do increase her meds she will be sleeping a lot more, at least until she adjusts (if she ever does). The second thing that scares me is the thought of Lyrica no longer working. As she reaches the max dose we will…

Gavin was hallucinating most of the night again. He real tired this morning so he's going to be fun today. Elliott was to hot last night. I was 80F yesterday and we can't open our windows for safety reasons. Emmett spiked fever last night as well. He was restless all night. Lizze is in so much pain that she can't sleep even though she exhausted. I have a busy week ahead of house work and laundry. I need to snake a few clogged drains and start looking for agencies to help with obtaining new window or portable air conditioners. I know of some but they are more for the elderly. Maybe we could be an exception ;) Have a great Monday and remember to help spread Autism Awareness. -lost and…