The painful truth about my son’s condition

I've been working on this update for a little while but haven't been able to keep my thoughts together. If you take one thing away from this entry, let it be that I'm very worried about Gavin. Lizze and I both are very worried about Gavin.  Let me begin with the fact that Gavin's heartbroken. His beloved Master Sword broke yesterday and it's like his entire world has crumbled around him. [videopress yBQWDnIr] Every single morning, Gavin trains with his visibly challenged, group of super best friends. This is one of the many teams he commands. These teams help to defend the Universe from evil villains like Eggman or Shredder. Just so we're on the same page, these are all Schizophrenic hallucinations and are only real to him. Anyway, every…

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I have good news and bad news tonight

Today has been one of those days were it's truly been a mix bag. We've been blessed with some really positive events today. At the same time, there's some bad news as well. I think that's how life sorta balances everything out.  In fairness though, life has a pretty shitty track record for balancing things out for us, and a lot of other families.  I want to begin with the good news because it's a pretty big deal.  I had been talking about how things being tight this month and how we are adjusting to a significantly reduced grocery budget. This has had me really stressed out and scrambling to figure out our options. Last night, or rather very early this morning, my new advertising deal came through. I hadn't…

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Gavin’s complaining of the weirdest thing today

Ever since Gavin was little, hes had a weird relationship with pain. It's been labeled a sensory issue but it's still weird.  Back when Gavin was self-injuring in a major way, he would scratch his face open or punch his legs until he left giant bruises. He would never complain about these things hurting and they obviously should have hurt.  At the same time, if he had a barely visible hang nail, he would freak out and react as though it was the end of the world. He's always been this way.  This morning, he began complaining the webbing between his fingers was cramping up. It wasn't his fingers or hands either. He specifically pointed to the webbing and said it's cramping between each finger, and on both hands.  WTF…

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This is what #Autism Parenting is like for me today and it’s not fun

Tensions seem pretty high right now because people are sick and we're trapped in the house. Lizze and I are both extremely stressed out today and that makes for a fun afternoon.  When my resources are as low as they are at the moment, I'm far less tolerant of everything Gavin does.  Normally, I doing well with the amount of patience I seem to have. I don't know of where it comes from but it always seems to be there. Today however, I'm running on fumes and things are getting to me that normally wouldn't.  Gavin's level of functionality is probably the lowest it's ever been, and as a result, I'm essentially having to micromanage his life at this point and it's absolutely exhausting. I know it's not his fault…

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It feels suffocating 

Gavin keeps following me around today. It frankly feels a bit suffocating and he doesn't seem to pick up on my less than subtle hints.  At the moment, he's in his room and likely sleeping off his morning medications. This will give me a small break and my goodness, is it appreciated.  I'll be leaving shortly to pick up the boys and then we have Dr. Pattie again this afternoon. 

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My son with #Autism is driving me crazy today – Here’s why

Gavin is having one of those days where he drives me absolutely crazy. The level to which he's driving me crazy today would be impressive, if it wasn't for the fact that he's driving me crazy.  The latest mile down the road to crazy he's taken me on, has to do with his IVIG Infusion.  We got his infusion started over an hour ago. I had to work with him because he was paranoid the infusions sites were leaking. I assumed him that they weren't and I explained that it's good to check things out if he thinks something is wrong but worrying too much isn't a good thing.  Between his excessive fear of the infusion site leaking and his desire to get his game started on the Playstation, he…

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New health concerns for 2 of my kids with #Autism 

I haven't had the energy to catch you up on a couple of things that are causing us to be concerned, in regards to the kids.  I'll start with Emmett because we learned something new about his fever disorder, while we were at the immunologist the other day.  She is the doctor that handles his fever disorder, as well as Gavin's Immunodeficiency, everyone's asthma and seasonal allergies. She also handles Elliott food allergies.  When it comes to Emmett's fever disorder, we have been chasing this thing since he was roughly a year old.  Fever cycles consist of many different and evolving symptoms. What we refer to as a flare up, presents with mouth sores, joints that are hot to the touch, massive mood swings and sometimes a fever. These symptoms…

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