Gavin Archives - Page 37 of 113

The Big Little Brother

I wanted to talk about something that's becoming an issue and will likely only continue to be an issue going forward. I should probably clarify that when I say issue, I'm referring to more of a challenge we're facing. When Gavin was little, it was pretty easy to miss the fact that he was different than most other kids. I don't mean different in a bad way either, just different. Gavin stopped emotionally maturing about the age of six or seven. Until that point in time, his chronological and emotional ages stacked up nicely. Unfortunately, as he's grown up physically, he's never caught up emotionally and so we have a Gavin that has the body of an eighteen year old but the mind of a six year old. It's now…

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May 21, 2018

Autism Parenting Confessions / Gavin / My thoughts

As he gets older, life becomes more challenging

Gavin spent the night at his grandparents last night and will be gone for most of the day today. As terrible as it sounds, it's a desperately needed break. Every day is a struggle with Gavin and as he continues to regress, life becomes more challenging for him and us as well. The behaviors we are dealing with each day are absolutely exhausting and while we don't blame Gavin for any of it, that doesn't lessen the impact said behaviors have. It's an unpleasant truth but as he gets older, he becomes more challenging and his behaviors more difficult to manage. These breaks are a necessity for long-term survival.

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May 18, 2018

Akron Children's Hospital / Autonomic Disorder / Gastroenterology / Gavin / My thoughts

@AkronChildrens Hospital called with a date for the procedure

I spoke last week about how Gavin is in need of an endoscopy and colonoscopy because of various potential health related problems in those areas. They needed to run labs to make sure that it would be safe for Gavin to have the procedures because Neutrophilia puts him at a much higher risk of infection. His labs came back and everything looked good. Now it was a matter of scheduling everything and waiting on the call to do so. I just got off the phone and we now have two dates. The first one is for pre-testing and that's with a nurse practitioner. My understanding is that we will basically go over everything and make a final determination as to whether or not it's safe to proceed with the procedures.…

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May 16, 2018

Autism Parenting Struggles / Gavin / My thoughts

Hope isn’t always easy to maintain but giving up isn’t an option

Life can be frustrating when you're an Autism parent because Autism has a way of impacting so many facets in life. I can't think of a single area in my life that Autism has made more complicated. The primary source of frustration as of late is generally in regards to Gavin. Gavin is such a sweet kid and I don't know anyone alive who tries harder than he does. The problem is the amount of effort that must go into micromanaging his life. I hate micromanaging anything, especially when it comes to people because it feels oppressive and controlling. Unfortunately, because Gavin lacks the capacity to make a great many decisions about his daily life, it falls on us to do that for him. Gavin has always lacked what's known…

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May 16, 2018

Gavin / IVIG Infusion / My thoughts

Teaching Gavin to help manage his own health care

Once again, Gavin has been shorted supplies for his IVIG infusions. As it stands, he doesn't have enough left to do his next infusion on Friday. Rather than simply take care of it for him, I asked him to put a reminder on his tablet to go through his supplies and figure out exactly what's missing. Once he figures that out, he'll report to me and I'll call the hospital and put the order in. It's so important that Gavin be as involved in his health care as possible. He can't make make his own medical decisions for obvious reasons but we want him to play as big a role as he's capable of being. Getting him to utilize his tablet for something other than games is important as well.…

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May 15, 2018

Elliott / Gavin / My thoughts

Ending the day with good news

I'm going to end the day on a positive note. Elliott is feeling better after a few days of being under the weather. With any luck, he'll be returning to school in the morning. In another piece of good news, Gavin's IVIG infusion went well. He was able to complete the entire process on his own and as far as I know, there weren't any leaks. There are plenty of times where the IVIG Infusions are a disaster and he needs to be restuck a few times. Any day that ends with Gavin having a good infusion, is a good day. I almost don't care about anything else that happens because these infusions are such a big deal. A bad infusion can set the tone for the day.. Gavin did…

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May 15, 2018

Clozapine / Gavin / My thoughts

Managing Gavin’s meds can be a huge PITA

One of the more frustrating parts of being a special needs parent is dealing with medications. One of the most frustring parts of dealing with medications is getting them filled on time. Gavin is on an antipsychotic known as Clozapine. Clozapine is the most tightly controled medication in the US. Clozapine requires bloodwork before each refill and because of Gavin's recent bouts with Neutrophilia, he can only have seven days worth of pills at a time. He can't miss more than one dose or he will have to be pulled off the meds. These refills are extremely time sensitive That means four times a month he needs bloodwork and I need to worry about his refills. There's a very specific process that must take place in order to get the…

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May 14, 2018

Autism Parenting Struggles / Gavin / My thoughts / YouTube Video

Micromanaging #Autism: Dealing with feeding problems

I wanted to take a minute and drop this video here, as well as pick your brain. Feeding problems can be quite common in kids with Autism, for a number of reasons. Unfortunately, it's not something that is always outgrown, as evidenced by the fact that after 18 years, it's still a problem. I'd love to hear your experience and find out how you've addressed feeding problems in your family. https://youtu.be/nJUhA5_aPJM

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May 14, 2018