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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We’re celebrating a little victory today

I've written this post out twice now and each time WordPress somehow eats it. For that reason, I'm going to keep this short and sweet..  I took Gavin with me to the grocery store the other day. He always wants to push the cart but I usually avoid this because he doesn't pay attention to his surroundings. He tends to run into people and things.  This time however, we weren't in a hurry and I could keep a close eye on him. You should see the look in his eyes when he can push the cart. It's very similar to a parent tossing their new teen driver the keys to the car.  He actually did pretty well. I had to stay on him but no one was hurt and nothing…

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When good news is heartbreaking 

I wanted to share some insight into what it's like to be heartbroken by good news. I know that sounds weird but let me explain.  On Tuesday, we were informed that Gavin has graduated from speech therapy. He had brought his scores up in several areas and he no longer fit the criteria that would enable him to continue.  On the surface that sounds like amazing news and in some ways it is. Gavin's worked very hard to make some of these improvements and we're proud of him. The heartbreak comes when you see beneath the surface and understand what this graduation really amounts to. The reality that my wife and I face is that we're so happy and proud of Gavin for doing so well in speech. On the…

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