Read more about the article 1 phone call has sent me into a complete panic
Common Variable Immunodeficiency / Gavin / Immunology / IVIG Infusion / My thoughts

1 phone call has sent me into a complete panic

I wrote about frustrations and explanations for why guardianship hasn't been completed for Gavin. I was explaining how things keep coming up that force us to reprioritize everything. See: I'm going to need an attorney. Not twenty-four hours go by and we're slammed once again, with yet another potentially life threatening issue. I received two very early morning phone calls today. One of from the pharmacy responsible for managing Gavin's IVIG infusion supplies and the other was from his immunologist. Turns out that there is an ongoing, nationwide shortage of GAMMAGARD, the life-saving medication that consists of donated antibodies from thousands of people, used to provide Gavin with a temporary, functional immune system. Gavin has something called Common Variable Immunodeficiency, see What the Hell is Common Variable Immunodeficiency. In laymens…

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June 13, 2018
Read more about the article I’m going to need an attorney
Autism Parenting Confessions / Gavin / My thoughts

I’m going to need an attorney

I spent the afternoon, going through the paperwork that needs to be finished up in order to file for guardianship of Gavin. I'm not sure Lizze and I can both be guardian's, as the paper only references one person or applicant. Maybe I'm wrong. I'll be very honest with you. While we haven't blown guardianship off by any means, it hasn't always been the number one priority either. When you're a special needs parent, there are always things that come up and we're forced to reprioritize. It's not that guardianship isn't important because it's extremely important but between other health related issues, both physical and emotional that pop up, there's only so much we can do. We've been in a slight holding pattern because we have to get paperwork back…

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June 12, 2018
Read more about the article The main reason I make everyday a clean slate
Inspirational Posts / My thoughts

The main reason I make everyday a clean slate

It's no secret that I'm struggling at the moment. You can read 3 tell-tale signs I need help with my #Depression for details on why that is. I'm having a better day today, at least comparatively speaking and there are many reasons for that. I want to focus on the main one for right now. It's something my wife and I have instilled in our kids from a very young age. It's called a clean slate. No matter how bad of a day any of us are having today, tomorrow is a clean slate. The idea of a clean slate isn't meant to excuse poor behavior or bad decisions. It's not meant as a get out of jail free card either. In regards to our kids, we remind them every…

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June 12, 2018
Read more about the article 3 tell-tale signs I need help with my #Depression
Confessions / Depression Management / Inspirational Posts / My thoughts

3 tell-tale signs I need help with my #Depression

I've been very open in regards to my ongoing war with depression. I feel that the only way we can de-stigmatize things like depression or any other mental health illness, is to speak openly, honestly and without shame. It's with the continued spirit of honesty, that I share with you my current struggles with depresion. I'm not going to go into my past history with depression in this post right now because honestly, this is hard enough as it is. You can however, read for yourself. See My War with Depression. In a nutshell, I'm not doing well. There are a few things that tend to happen when depression is kicking my ass. It's always been that way. As problematic and disruptive as these things can be, it's sorta like…

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June 12, 2018
Read more about the article What it’s like when I don’t cope well
Autism Parenting Confessions / My thoughts

What it’s like when I don’t cope well

I'm feeling incredibly overwhelmed this morning and I'm not entirely sure why. I've been feeling anxious and like there's just too much going on for me to cope with. I honestly can say that it isn't just one thing that weighing on me, it's the totality of everything. On most days, I'm able to take things on, one or two at a time and cope. On days like today, I taking on everything at once and it's crushing. This isn't something I'm doing on purpose or even consciously but the impact on me is significant. I'm literally shaking as I write this because I can't seem to center myself and it's more than I'm able to adapt to at the moment. I need to remove myself from the game for…

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June 11, 2018
Read more about the article 1 more reason my heart is breaking tonight
Gavin / My thoughts

1 more reason my heart is breaking tonight

I've talked many times about Gavin and his many challenges. I've confessed to being frustrated and overwhelmed by his behaviors on many occasions as well. It's no secret that everything he goes through is absolutely heartbreaking to me. I think it would be for anyone with a soul. One of the reasons that it's so heartbreaking for me is because while it's true that Gavin is blissfully ignorant of his challenge on most days, there are days he becomes aware of them. Yesterday was one of those days where my frustration got the better of me and it just happened to coincide with Gavin being aware of something he was struggling with. I don't remember everything that happened because frankly, there was just too much to remember but it basically…

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June 11, 2018
Read more about the article I’m looking forward to this week for 1 big reason
My thoughts

I’m looking forward to this week for 1 big reason

We're going into our third week of summer vacation and I'm really looking forward to it. I'm not looking forward to it because there's something amazing happening, in fact, it's quite the opposite. I'm looking forward to this week because there's absolutely nothing going on. We still have our regular, weekly appointments but there are no out of town trips and no doctors appointments that have the potential to go badly. So often we are bouncing from one appointment to the next, in a seemingly endless game of hopscotch. It's exhausting for all of us but it's especially hard on the kids. Our goal for this week is to have a low key, relaxing seven days because we start back up with out of town appointments next week. Our budget…

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June 11, 2018
Read more about the article 2 things that have always overwhelmed me as an #Autism parent
Autism Parenting Insight / My thoughts

2 things that have always overwhelmed me as an #Autism parent

There are so many things about being an Autism parent that can be overwhelming. Everyone's list is likely to be different but I bet there are at least a few overlaps. I thought I would share two of the most overwhelming aspects of being an Autism parent for me. For me, and I've said this a million times before, sensory processing challenges are easily one of the most overwhelming aspects of being an Autism parent. Sensory processing disorder impacts my kids in different ways. Generally speaking, SPD makes it incredibly difficult to feed, clothe, and even take my kids anywhere. They are very easily overwhelmed by sensory input. Things like taste, smell, sound, touch, and sight can often lead to overstimulation. This leads to the inevitable meltdown. It's not their…

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June 11, 2018