Autism Parenting Heartbreak Archives - Page 2 of 2

The heartbreaking talk I had with my youngest

I always try to live my life without making any assumptions, at least big ones. No matter how hard I try, I inevitably find that I've made assumptions without even realizing it. I ran into one such time over the weekend. On one of our many trips to Home Depot, while trying to fix our kitchen sink, a subject came up and resulted in a heartbreaking conversation with Emmett. I'm not sure what we were talking about but I stopped off at a gas station because we needed gas. I asked Emmett if he wanted to learn to pump gas. Always eager to learn new things, he jumped at the opportunity. I closely monitored him but he did really well and we were soon on our way to pick up…

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July 2, 2018

Autism Parenting Heartbreak / Inspirational Posts

#Autism breaks my heart in more ways than I can explain

Autism is one of those human conditions that impacts every person touched by it in a different way. Sometimes those differences are not so big and other times those differences can be so profound, that you may wonder how they can all fit underneath the umbrella known as Autism.. Each of our three kids is impacted in different ways by Autism. Gavin is easily the most profoundly impacted though. Gavin has an extremely rare form of Autism called Childhood Disintegrative Disorder. There's almost no research or support for this blacksheep of the Autism Spectrum family. Most people haven't even heard of Childhood Disintegrative Disorder or CDD. Unfortunately, CDD is absolutely devastating and based on what little is known about this disintegrative disorder, there is never a good outcome. The reason…

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April 2, 2018

Autism Parenting Heartbreak / Emmett John / My thoughts

When #Autism truly breaks your heart

During therapy tonight, we spoke with Emmett about his tummy aches. He wasn't super forthcoming, which doesn't surprise me. We asked him if anything was bothering him because sometimes that can cause a tummy ache. The way we word things is critical to communicating with Emmett. He's so incredibly literal, it's very difficult to talk to him sometimes. By sometimes, I really mean most of the time. It's one of the things that makes Emmett, Emmett. Over the years we've figured out ways to work around these obstacles when we can't work through them. Unfortunately, if there's even the slightest emotional charge to a conversation, it's often a lost cause. It's becomes a live to fight another day kinda thing. When we spoke with him tonight, Lizze, myself and Dr.…

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February 14, 2018

Autism Parenting Heartbreak / Gavin / My thoughts

Gavin seems to be struggling more today, and it’s heartbreaking

Gavin's had a rougher day thus far. He seems to be on edge, but there's no apparent reason why and if you ask him, he says he's fine. He had his IVIG Infusion this morning, and per the current norm, he did it all by himself. Unfortunately, he ran into a few snags and rather than merely address them; he freaked out instead. One issue was that the one injection site was leaking a little bit. This happens, and all we have to do is create a better seal at the infusion site. Gavin knows this, but instead, he chose to remove the needle all together which meant it would have to be placed back into his belly. That means more pain, and I don't know why he did that.…

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January 26, 2018