It's been the longest, most stressful day I've had in a long time. There are two main reasons for my current level of distress and both are related to Gavin but not his fault.
I received a call today from Gavin's doctor. When I saw who it was, my stomach knotted up and my heart sank. They never call unless it's bad news. I was right. Apparently, Gavin's numbers are crashing again. I'm currently waiting for him to come out from having his labs drawn for the second time in three days. I didn't get all the numbers but they informed me that his Absolute Neutrophil count (ANC) dropped from 2.9 to 1.8 in less than a week. This is not a good thing and I wish I knew what was responsible for this but no one knows for sure what it is. The most likely culprit is the Clozapine but it's also possible it's part of his CVID (Common Variable Immunodeficiency) as well.…
I remember the moment each one of my kids was diagnosed with Autism. It's permanently seared into my brain because these moments are among the most pivotal in my life. One of the things I remember most was how much guilt I felt as our Autism journey began. I felt like I had sentenced my kids to a life of misery because them having Autism was somehow my fault. That guilt ate me alive for a long time. Truth be told, there are still moments where that guilt pops back up, even after all these years. I wanted to take a minute and talk to the Autism parents of the world, especially those just starting this crazy, wonderful, confusing and overwhelming ride. Speaking from personal experience, and extensive contact with…
It's been an interesting and even pleasant evening. Tuesday night therapy went well for everyone and while the boys were a handful at bedtime, everyone's sleeping. Lizze went to a late night movie with her Mom and I ended up falling asleep one the couch before 10 PM. I slept clean through until Lizze got home a bit after midnight. She had a great time with her Mom and I had a really quiet evening alone, which is actually nice to have every once in a while.. ☺ There's a better than average chance that we're looking at a snowday this morning. The school had already been talking about this when I was picking the kids up yesterday afternoon. I suppose a snowday wouldnt be the worst thing in the…
I'm keeping this short and sweet cause we're getting ready to head out the door again. Both the boys had good days at school. They came home in a good mood and are feeling good about going back tomorrow. ☺ If I could pick only one thing to go right today, this would have been it. I'm so relieved that everything went well.. ☺ Many of you will recognize the significance of surviving a significant change to your ASD kid's routine. It's even more amazing when they not only survive it but totally own it. I'm proud of my little minions.... ☺
We just finished meeting with Social Security. Gavin has to requalify for permanent disability now because he's eighteen years old. The appointment only took about an hour and that's not too bad. I felt terrible because there were people without appointments who'd already been waiting almost five hours for a possible walk-in appointment. That absolutely sucks. Anyway, we answered all the necessary questions and they were really good with Gavin. Now we wait four or five months and see what happens. I'm still his payee and there was no paperwork needed for that. When Lizze and I gain permeate guardianship, I'll have to submit those papers but it doesn't really change anything. They will be pulling all of Gavin's medical records since his last appoval and using that to determine…
The morning has been unbelievably stressful but we've been hitting the targets so far. Emmett and Elliott are at school but that didn't come easy. I had to walk Emmett into the school and briefly meet with his teachers in regards to his makeup work because that's the only way he would be comfortable enough to stay. Unfortunately, that set us back a little bit in regards to time but it was totally worth it because he felt better. I haven't even had a chance to eat breakfast because I had to pick up Lizze and Gavin from home, drop Lizze off at her appointment and take Gavin for his bloodwork. I did take advantage of being in a huge parking lot and went for a brief walk while I…
Despite all the positive thoughts and optimistic approach to this morning, it's become a fucking nightmare. Emmett is freaking out, Elliott is not being super cooperative and Gavin won't stop talking to me. I swear to God, if I had any hair left, I'd be pulling it out right now. I'm taking a few minutes to myself right now and putting myself in timeout. I figured I would make this a teachable moment and hopefully something positive will come from this disaster. Rather than continue beating my head into the wall and losing what little sanity I have left, I'm putting myself in timeout for a few minutes. I'm someone who has a great deal of patience with my kids but even I have my limits. Without question, I've reached…