Read more about the article It’s things like this that make communication challenging 
Gavin / My thoughts

It’s things like this that make communication challenging 

Gavin had a weird night last night. Right after dinner, I got Gavin's IVIG infusion going. The weirdness started when he decided to stop eating dinner because he thought he might get reflux if he finished it. He was afraid that if he ended up with reflux, he wouldn't be able to get his infusion tonight and would have to wait until today. I didn't argue with him because whatever... It's not worth it. Gavin's right in the sense that I wouldn't delay his infusion if he were dealing with reflux. The infusion is hard enough on his body and if something happens during or after the infusion, I need to know that he was okay prior to beginning. Does that make sense? Maybe five minutes after getting the infusion…

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July 18, 2017
Read more about the article Heartbreaking signs that he’s getting worse
Gavin / General Update / Heartbreak / My thoughts

Heartbreaking signs that he’s getting worse

Gavin's showing more and more signs of regression. As someone who sees him all day every day, it's harder to pick up on things like this because it's generally a gradual process. When someone sees him for the first time in awhile, it's much easier for them to pick up on the changes. I've been paying closer attention lately because I've been worried that he was experiencing more regression, but wasn't sure. It pains me to say this, but he appears to be regressing once again. Regression is a huge part of Childhood Disintegrative Disorder, and what sets it apart from other, more common forms of Autism. Gavin's losing skills he'd previously mostly mastered. His executive function is very much declining. He's become more unorganized and has a shrinking vocabulary.…

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July 16, 2017
Read more about the article Gavin had a bad reaction to his #IVIG infusion
Bad Reaction / Gavin / IVIG Infusion

Gavin had a bad reaction to his #IVIG infusion

Gavin gets his IVIG infusion this morning, but I'm a tiny bit concerned. When he had his last infusion on Friday or Saturday, he got sick afterwards. He began not feeling well about an hour after it was done.  He soon became sick to his stomach and needed his anti-nausea medication, in order to make it through the night.  Thankfully, he's feeling better today but he had a rough go of it.  I don't know why he sometimes has bad side effects but not all the time. I'm grateful it doesn't always happen but I wish I could nail this down because if I knew why, I could try to fix it.  Unfortunately, it may just be a Gavin thing and there's no rhyme or reason to it. Hopefully, today's…

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July 9, 2017
Read more about the article I need advice from Adult #Autistics or those with #SensoryProcessingDisorder 
Gavin / I Need Advice

I need advice from Adult #Autistics or those with #SensoryProcessingDisorder 

Okay folks, I've always been someone who's keenly aware of how Adult Autistics can be an absolutely amazing resource for parents of kids with Autism, like myself.  Today I'm reaching out to the Adult Autistic community, and or people with Sensory Processing Disorder. I have a question about my oldest with Autism.  My goal is to gain a better understanding of what he's experiencing, so I can better support him.  Gavin usually goes with me when I fill up our five gallon water jugs. These jugs have built in handles, to make them easier to carry. Some of the jugs have no grip on the handle, while others have a slightly textured grip to keep it from slipping out of your hand.  Gavin always complains about the water jugs with…

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July 7, 2017
Read more about the article IVIG infusion supplies are late
Gavin / IVIG Infusion

IVIG infusion supplies are late

There's been a pretty major snag today. Gavin's IVIG infusion supplies have not yet arrived. It's been a few months since we've had any problems, and maybe they're out for delivery today, but it's put his infusion on hold.  The deliveries are somewhat unpredictable because they don't come out in the same day each month. Sometimes they're delivered early, sometimes they're late, and other times they're on time.  I have a call in but haven't heard back yet. For that matter, we still don't have his new sharps container that I ordered last week. I'm not sure what's going on.  The pharmacy policy is that expect your order, unless you hear from them.  I've not heard back from them, so everything should be okay, based on their instructions. 

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July 7, 2017
Read more about the article We reached a unique and amazing milestone 
Gavin / Today's Victory

We reached a unique and amazing milestone 

Gavin's going to be eighteen years old in January, and I'm really trying to work on self-care type things with him. Things like showering, shaving, medications, personal hygiene, and even choosing appropriate clothes.  For the most part, showering, and medications are things that he can reliably do. Sometimes it can be hit or miss, but he really does a good job.  He's been shaving by himself with an electric razor for about a year or two. Sometimes he misses more than he gets, but he puts the effort in, and we just continue to practice.  Personal hygiene is something that we struggle with. Gavin is not very self-aware, and so he doesn't pay attention to food on his face, or toothpaste all over his mouth. This is definitely a work…

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July 6, 2017
Read more about the article My frustration level is through the roof today
Gavin

My frustration level is through the roof today

I'm frustrated with Gavin today, but it's not really his fault. He was cleaning out the ferrets litter box, and didn't pay attention to what I had told him, and he ended up breaking the cage.  It's possible I'll be able to fix it, but that's not really the point.  If he'd simply listened to my words, this could have been avoided. While I'm frustrated, I'm not angry. This is one of the many challenges I face as an Autism parent/special needs parent.  The reality is that Gavin my not have heard me. He could have heard but then forgot. He may have also simply been impuslive.  All I know is that this isn't fun, and after five nights of major sleep loss. My patience is wearing thin, and I'm…

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July 5, 2017