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…

0 Comments

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…

3 Comments

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…

0 Comments

Sleep and #Autism Parenting

It was a long night and I'm exhausted. Lizze sent me back to bed and left me undisturbed until I woke up on my own. Thank you for that.. ☺ I will say that it's amazing how lack of sleep impacts, even after getting an extra long nap. Truthfully, I feel pretty good but at the same time, I'm also feeling drained. There's absolute truth to the notion that you cannot make up for lost sleep. You can get sleep after having lost some but it doesn't undo what the lost sleep did. I don't know if that makes any sense but I bet if you asked most Autism parents if getting an extra long nap undoes the previous nights loss of sleep, I bet most would say no. That…

1 Comment

Poor Emmett is not doing well

It was a long night and I'm exhausted. Emmett is definitely sick and he's getting worse as time goes on. It began as an infrequent cough but now it's a fever and a cough. The cough is constant and dry. I don't think it's necessary to get him to the doctor as this is probably a cold but I'll be keeping a close eye on him.

0 Comments

I had the coolest experience with my kids tonight

I mentioned previously that it's a guys weekend because Lizze is out of town with her Mom. It's weird without her here but it's healthy for everyone to get a break from everyone at times. The boys and I ran a few errands before heading to the park. Unfortunately, between Emmett not feeling well and an outdoor wedding, our plans reverted to getting ice cream before heading back home. Here's the really cool part. We were trying to decide on a movie to watch together and I insisted it be something they've not seen before. I wanted them to try something different and maybe learn something new. As we were trying to decide and going through trailer after trailer, something popped into my head. Out of nowhere, Flight of the…

0 Comments

It’s going to be a guys weekend

Gavin's infusion finally finished, which is a good thing but the process has completely wiped him out. Currently, he's sleeping but I'm hoping he'll be up shortly. The boys and I are having a guys weekend because Lizze is on an out of town trip with her Mom. Everyone wants to go to the park and I'm totally game. With all the unexpected expenses over the last 30 days, I simply can't afford anything like going to a movie or taking them out to dinner. That's okay though because we're going to have fun regardless. I know the boys want to go Pokémon hunting and perhaps I'll let them do that while we go on a two mile walk. I'm super excited to have guy time with the boys. The…

0 Comments

Gavin’s IVIG infusion is NOT going well today

Gavin's been undergoing his IVIG infusion for over five hours now and it's still not done. This is not a good thing because he's getting extremely anxious and understandably so. This usually comes down to needle placement and because there's only so many locations in his belly to place both needles and because there have been roughly 5,826 total needle sticks into his belly thus far, scar tissue is a problem. I suspect scar tissue is the leading cause of today's complications. As a result, what should take roughly an hour is dragging out into almost six hours. There's nothing we can do but let it run its course. The IVIG Infusions are absolutely crucial to Gavin's survival. We can't just write it off because it's taking too long. Hopefully,…

2 Comments