Family Archives - Page 196 of 553

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

My thoughts

Impacted by stress and it’s causing Insomnia

My weirds sleep disturbances have turned into Insomnia now. Last night I felt fine. I wasn't anxious or anything like that. I should have been able to sleep. Unfortunately, sleep never came. I didn't go to sleep until about 7AM. Today was Lizze's turn to take the boys to school and she sent me to bed. Thankfully, I fell asleep right away and slept until about noon. I'm grateful for the sleep but I hate sleeping during the day. I don't know what's going on but I'm fairly certain it has to do with stress. Stress is that thing in my life that's as abundant and constant as the love I have for my family. In other words, it's immeasurable and always there. I'm more profoundly impacted by it lately…

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May 15, 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

Autism Parenting Woes / My thoughts

I’ve been having trouble sleeping

For the last week or two, I've been having really hard time sleeping at night. I wouldn't call it Insomnia but rather something else all together. Not that I wasn't under tremendous amounts of stress before but this year in particular, has been very stressful. Some of this stress comes from obvious places while other, not so much. It's like the moment I lay down to go to sleep, my world just comes crashing down around me. I get panicky and feel as though I can't breathe or swallow properly. I know that sounds really weird but that's what happens. I end up having to move to the couch because I find myself so frustrated and sometimes the change of scenery helps. I've tried things to help fall asleep because…

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May 14, 2018

My thoughts

We want to make some changes

We want to get into some new routines prior to summer break because it will be easier to transition the kids if it's something we've been doing for a couple of weeks already. The boys only have ten days of school left and I'm beginning to stress out a little bit because our grocery budget has taken a hit. I'm working to overcome some of these obstacles but the reality is, it's much easier said than done. For now we will have to work within our means, while we strive to do better. One of the things we wanted to start doing is returning to the farmers market. We used to do this all the time when the kids were younger but it's been years since we've been there. The…

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May 14, 2018