Gavin Archives - Page 25 of 113

The heartbreaking reality of parenting an adult child

Being a parent isn't easy. I don't think anyone would argue that statement. Being a special needs parents it's without a doubt, the most difficult endeavor of my entire life. We are facing a very difficult reality right now with our oldest, Gavin. Gavin's going to be 19 in a few months and we're still adjusting to him being an adult. My goodness, does that make me feel old. I've been raising Gavin as my own since he was about 15 months old. I legally adopted him many years ago and that was a moment I will never forget. I'll always look back on the day we went to court to make things final, as a blessing and a truly amazing experience. My personal journey with Gavin has brought me…

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September 23, 2018

Gavin / IVIG Infusion / My thoughts

I could and even should be angry but that would only hurt me

This is a little frustrating. I wasn't here when Gavin's infusion supplies were delivered at the beginning of September. Normally, we check them right away and make sure we received everything. For whatever reason, that fell through the cracks this time. Gavin informed us that he was short three needle sets last night. He received his infusion today but is out of needles for the rest of the month. I wasn't upset because while this has been very problematic in the past, they've been doing pretty well recently. Sometimes things happen and there's no sense in getting all worked up over it. I calmly called this afternoon and explained that we were shorted the needle sets. The pharmacy said they would get them out to us on Monday. I said…

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September 21, 2018

Gavin / My thoughts

I’m at my wit’s end

Gavin is checking all the boxes today in regards to being challenging. We've had one issue after another leaving Lizze and I frustrated. After the issues with his IVIG infusion this morning, Gavin was washing some dishes he needed for lunch. All of a sudden, he begins freaking out. This isn't uncommon for him and therefore we don't always react. He came out of the kitchen and began complaining and telling us that his ankle was cramping up. First of all, ankles don't cramp. That means either something else is going on or he's using the wrong words to describe it. Either way makes it difficult to figure out what's going on. As we're trying to talk to him about it, he's getting more and more worked up. Keep in…

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September 18, 2018

Autism Parenting Struggles / Gavin / IVIG Infusion / My thoughts

He lacks commonsense and that’s why this happened

Gavin had a very rough morning. He was struggling and that was even more apparent when it came to his IVIG infusion. I'm not sure where his head was at but we had problems. Maybe he was distracted, preoccupied with thinking about one of his games or perhaps he had a pending mission on his mind. I don't know and I don't think he does either. After dropping the boys off at school, I went walking in the rain. It wasn't too bad but getting wet is getting wet. Anyway, while I was gone, Gavin was preparing his IVIG infusion. He does this every single Monday and Friday morning. Today however, something was different. It's like he was backwards in what he was doing. He opened the supplies, kept the…

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September 17, 2018

Autism Parenting Woes / Gavin / My thoughts

Did you know that many kids with #Autism lack a filter? Here’s a perfect example.

I mentioned in the previous post that we took Gavin to dinner last night cause the boys were gone and we thought it would be nice. We ended up at Chipotle grabbing burritos. Gavin does a pretty good job at ordering for himself but I stayed within earshot because like many kids on the Autism Spectrum, he very much lacks a filter and you never know what's going to cone out of his mouth. What's a filter? A filter is what we call the ability to think something and not blurt it out for everyone to hear, regardless of appropriateness. Some might call it tact but filter is the general term. Anyway, Lizze was getting ready to pay and Gavin was finishing up his order. The person behind the counter…

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September 15, 2018

Gavin / My thoughts

Once upon a time when he could remember

As time goes by, it becomes more and more apparent that Gavin's entire state of being is in decline. One of the most impactful for him, at least from my perspective, is his memory loss. Memory loss is probably not the right word choice because it's more like unable to remember than it is losing memories he already has. The latest example of this is from a few minutes ago. Gavin is continuing to lose weight and his gastro put him on Ensure. He's supposed to drink one with every meal, totalling three a day. We've talked about it many times and he's specifically asked about when he was going to get the Ensure, so he can have one with each meal. There was a delay with his shipment of…

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September 12, 2018

Clozapine / Gavin / My thoughts

One less thing to worry about

Right after getting the boys to school this morning, Lizze and I will be taking Gavin to his psychiatrist. This should be just a follow up and the fact it's so close to his hematology appointment is purely coincidence. On the plus side, we'll be able to talk about what we learned while it's still fresh on my mind. This should put to rest our current concerns over the Clozapine, at least for now. With a medication like Clozapine, you can't let your guard down and you must remain vigilant with things like bloodwork. We basically learned that the side effects of Clozapine, specifically in regards his ANC dropping, isn't as big of concern as we originally thought. This takes a little pressure off because at this point in time,…

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September 10, 2018

Akron Children's Hospital / Autism Parenting Confessions / Autism Parenting Insight / Gavin / Hematology / Inspirational Posts / My thoughts

As a general rule, I don’t apologize for any of my kids with #Autism but this is one exception

I mentioned in a previous post that something happened yesterday while at Gavin's hematology appointment. Akron Children's Hospital was great, they always are. You have to understand something before we go any further. This appointment took place where Gavin used to receive his IVIG infusions. We're very familiar with this place after years of visits. Gavin is a sweet kids and doesn't have a mean bone in his body. He would never intentionally try to hurt someone or say something that caused someone pain. Unfortunately, along with missing mean bones, he's also missing a filter. It's not uncommon for kids on the Autism spectrum to lack a verbal filter. They basically say it how it is, and are unburdened by things like inhibition. Typically, kids with Autism don't lie. They…

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September 8, 2018