Bad News news to share about Gavin

I've been putting off a really important update recently because I'm still processing some of it, at least I'm trying to. During our last meeting (this past Tuesday) with Dr. Pattie, Gavin did another mission debriefing. This debriefing was a little different because we learned something new about the status of his current psychosis. After talking about all the adventures he had gone on since the last debriefing, I began asking him questions about what he was saying, in an attempt gain a bit more insight. These questions led to a much better understanding of where he currently resides, psychologically and emotionally. It turns out that Gavin's hallucinations are actually getting worse. There used to be a portal he had to walk through in order to be transferred from his…

14 Comments

What his stomach looks like after an IVIG infusion 

I wanted to take a minute and share a bit of insight into what Gavin experiences in regards to his IVIG Infusions. Gavin receives these medically necessary procedures twice a week and will do so for the rest of his life.  These infusions provide him with the immune system his body naturally lacks. Without these infusions, his body would not be able to fight off infections.  While these treatments are a blessing, they aren't  always pleasant.  The pictures below show what the infusion sites look like and it's incredibly unpleasant for him. Gavin has almost no body fat and so all the swelling is from the infusion 

0 Comments

Quick Update 

We had to get both Gavin and Lizze's bloodwork done this morning. Everyone cooperated pretty well and I'm grateful for that. We also had to stop by the UPS Store on the way home. Elliott and Emmett were distracted by Pokémon Go during the hour or so we were gone. They actually had fun, which made everything much easier. Everyone is in a good mood this morning, at least for the most part. I'm hoping that good mood will continue when we get home because I have some small projects I'd like to work on today.

0 Comments

Are #Autism Parents Overprotective? 

Being a parent period, is a difficult but rewarding task. When you're an Autism or Special Needs parent, that difficulty level is increased to the nth degree as is the reward factor. Raising a child with a developmental disorder like Autism, is extremely difficult because of the very nature of the disorder. Autism is a very dynamic condition and often presents in a very fluid manner. This means that everything involving the parenting of a child with Autism can more often than not be a moving target. In my personal experience with my three boys on the Autism Spectrum, something that works today, may never work again. Likewise, something that's never worked before, could actually work today. Every single day that I wake up, I honestly have no idea what…

13 Comments

2 hours of sleep

This morning was particularly rough for me personally. Elliott was up until almost 4 am and shortly after falling asleep, he woke up screaming because he must have bitten his the inside of his cheek. He was really upset and in pain but I couldn't figure out what was going on until we were up for the day. Elliott wasn't able to tell me what had happened because he wasn't fully awake. He did go back to sleep but when the alarm went off to get the day started, we had only had about 2 hours of sleep. The boys did get off to school without much issue but I'm going to have to take a nap..

14 Comments

Fixing what’s broken within the #Autism community

One of the things that I've seen as an obstacle within the Autism community, is our ability to work together regardless of our differing beliefs. I've spoken about the major rifts that have formed and how those rifts are preventing unity.  If you've been blessed enough to not run into one of these rifts, count yourself lucky because it's not always a pleasant experience, especially for the newly initiated parents within the community who have no idea what they're walking into.  Likewise, if you haven't experienced this first hand, don't discount the validity of these words because many others have experienced these things.   These rifts have led to factions or individual groups that sorta break off and do their own thing. What leads to these secessions is often a…

1 Comment