Gavin’s doing better in this area

I know Gavin struggles in most areas of his life. That's just the reality of the situation and I won't sugar coat or spin that. It's frustrating as his parent because I find myself having to micromanage is life and I don't want to be doing that. Having said that, I have a spot of good news. Gavin is doing better with his IVIG infusions. When his infusions started up again, after the medication shortage issues, he couldn't do his infusions on his own anymore. Maybe too much time had passed and he forgot how to do them properly? Truthfully, I don't know. I'm relieved to share that the last few infusions that have been done, he's done entirely on his own again. He's doing a very good job and…

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Describe your #Autism Parenting experience in 3 words

I haven't done one of these in a long time. This is both fun and educational, all at the same time. People tend to either forget or miss altogether the fact that every Autism family is different because every person with Autism is different. By taking a second and describing your experience being an Autism parent in 3 words, you will help others realize the differences and maybe even learn something yourself. Please leave your 3 words in the comments below. You can also reply to the original tweet or the post on Facebook. All the comments sync up so whatever is most convenient for you. ☺

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Things just got a lot harder for us and I’m not sure what we’re going to do

Something has changed recently and it's already having a significant impact on things with my family. I haven't talked about this yet because I've been preoccupied with other things but it's already creating some challenging situations for us. When I partner with a company or organization, I almost always announce it, especially if I'm endorsing something. Likewise, when a partnership ends, depending on why it ended, I usually announce it because it keeps everyone on the same page. Guardian Locate comes to mind. I worked with that project for many years and it was a decent chunk of my income. When I chose to leave, I explained that I didn't agree with the direction it was going in. It was important to me that I announce the separation because I…

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Congratulations Wishes Can Happen and @mix941canton

I wanted to take a second let you guys know how the Wish-A-Thon went. Thanks to everyone who made this possible. Thank you to everyone who worked so hard to make this year's Wish-A-Thon such a success. The final numbers are in and Wishes Can Happen raised $213,759, which I believe is a record. I also believe that they exceeded their goal of being able to raise enough money to grant 40 wishes. This is so unbelievably awesome. I'm grateful to have played a very small role and I'm blown away by the generosity of everyone. This will make such a difference in the lives of so many families. Thank you again. ☺

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The truth is sometimes I don’t want to remember

My experience with Wishes Can Happen this morning was quite profound. I'm completely emotionally drained and physically exhausted. At the same time, it was for a very worthwhile and and well worth the fallout. I'm not sure if people understand how difficult it can be to talk about one of the most horrible thing any parent can imagine, a child with a life-threatening or terminal illness. There are times that I'm able to live in a bubble and pretend that we are a normal family. I hate the word normal but in this case, I mean a family who's child isn't facing a life or death illness, with no hope for a cure. This bubble I sometimes retreat to is born out of necessity. It's purpose is to help me…

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As far as days go, this was a bad one

As far as days go, it's been a rough one. I'll talk more about it in the morning, after I do my interview thing for Wishes Can Happen. I really need some things to start going our way. It's pretty easy to feel defeated right now and I'm trying not to let everything weigh on me but it's so much easier said than done. Ive been battling with Spectrum all day, Gavin's IVIG infusion supplies didn't show up yet and we're out of supplies. That means we have nothing with which to perform Gavin's infusion today. Anyway, I need this day to end so I can wipe the slate and hopefully start off on a better foot. I'm overwhelmed, exhausted and need to sleep cause I have to get up…

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We had massive, massive meltdown

Gavin's had a rough day today. He was very easily frustrated and couldn't seem to remember much of what he was being told. A good portion of this was Gavin being Gavin and is fairly typical of his general demeanor. Some of it was a bit excessive and not something we see very often from him. For the most part, Gavin has mellowed out significantly as he's gotten older. That doesn't mean we don't have problems. Tonight, our internet went out again. Spectrum has to come back out in the morning because they need to replace the modem with a different model. Too many people are having issues and it looks like they are replacing them with a different model. It's free so I don't really care what it is,…

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Guess who doesn’t like changes in routine?

Plans have changes a for the rest of the week. Nothing significant but it's still a change nonetheless and guess who doesn't like change in this house? That's right, everyone but me. I had prepared the kids for a certain schedule and while it's better that things got pushed up, it was still a variation from what they thought was happening. That said, Spectrum has already come and gone this morning. They were here before 8AM and the guy was really cool. Vivint is going to be here anytime in the next few hours and that's the big thing for today. We may need to get a whole new panel but we'll see what happens. The other thing that's changed is our participation in the Wishes Can Happen Wish-A-Thon. We…

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