Read more about the article Here’s how the morning has been so far
My thoughts

Here’s how the morning has been so far

The boys made it off to school today. Emmett struggled a bit this morning because he's nervous about returning to school after so long. He's also stressed out over his make-up work. We've been working on it while he was home but he still has quite a bit to do.  The good news is that he's at school right now, and so is Elliott.  The good news continues because Gavin and I finally made it back to the track. He was able to do 1.5 miles, at a decent enough pace. It felt real good to be back at it. ☺  Our goal is to take in the track a few days a week and the off days, I'll use the treadmill.  Sadly, I can see Gavin struggling more and…

0 Comments
May 9, 2017
Read more about the article I’m so close to getting the boys to school
My thoughts

I’m so close to getting the boys to school

I'm thinking that I'll be able to get both boys to school today. I'm being met with some resistance from Emmett, but it's more anxiety related. He hasn't been back to school in well over a week, and he's nervous about going back.  Unfortunately, their clothes didn't dry and we're having to wait on the dryer before leaving.  Lizze is already at class for the day, so Gavin and I are on our own. I think we will be walking the track and then visiting my grandfather around lunchtime.  I'm hoping to get some writing done and then maybe some house work.  I really, really need to get our routine back on track. It's been thrown off since Emmett began his latest flare. Even neurotypical Dad's need routine.. ☺ 

0 Comments
May 9, 2017
Read more about the article How the Vivint Smart Home app works
Vivint Gives Back

How the Vivint Smart Home app works

I want to take a minute and share a video I put together to show how I use the Vivint Smart Home app to manage my home. Please understand that I have limited resources in which to make this video with, so forgive me there.   It's also important to understand that while this will work for any family out there, I'm directing this more to the Autism community.   As Autism parents, we need to take advantage of any tools available to help us raise our kids and keep them safe. Life is always going to be tough, but at least we can leverage technology to help us make some areas more manageable. Perhaps even gain some peace of mind.   The video below shows how the Vivint Smart…

4 Comments
May 9, 2017
Read more about the article What’s less than running on fumes
Emmett John / My thoughts / PFAPA

What’s less than running on fumes

Emmett is in such a foul mood today. His fever is back up to almost 102°F and he's a nightmare to deal with this morning.  Lizze and I are completely spent. We're so far beyond running on fumes, I don't know how to put this into words.  All I want to do is go to bed and sleep forever at this point. Fat chance that's going to happen anytime soon..  Zzzzzzzzzzzzzzz

0 Comments
May 6, 2017
Read more about the article Trying to find the light at the end of this tunnel
Emmett John / My thoughts / PFAPA

Trying to find the light at the end of this tunnel

This fever flare has officially cost Emmett an entire week of school. Not only has it cost him the week of school but it continues to have a vice like grip on his body.  He's not currently running a high grade fever, it's still a fever at around 101°F on average.  We've taken to describing his tongue as a zombie tongue, because that what we image a zombie's tongue would look like.  I'm not sure how to handle his dentist appointment tomorrow. He's not sick, but it looks like his tongue is falling apart. I need to call and try to explain what's going on and see what they think. The other thing is the fever. As soon as they touch him, they'll know he's running a fever.  Frankly, Emmett's…

0 Comments
May 4, 2017
Read more about the article I’m so overwhelmed I just want to cry 
Emmett John / My thoughts / PFAPA

I’m so overwhelmed I just want to cry 

It's been another exhaustive day in the house of freakishly rare, and frustrating medical conditions. Emmett wasn't at school again because of a fever. He's now been out of school since last Thursday, and while this is outside of anyone's control, it makes me uncomfortable.  The school is very understanding and we do t have any issues in that area, plus we do have a few notes from his doctor, but it doesn't cover everyday.  Emmett did pretty well today. He wasn't as moody as he has been, but his fever is still present. It comes and goes throughout the day. We have to adhere to the twenty-four hours without a fever before returning to school rule.  The problem is that while we may be confident this is a fever…

10 Comments
May 4, 2017
Read more about the article Gavin seems to be losing this major skill and it’s heartbreaking
My thoughts

Gavin seems to be losing this major skill and it’s heartbreaking

We have discovered Gavin is having some newer challenges recently that are really heartbreaking. Aside from all of Gavin adventures with his team of super best friends, one of the things that Gavin truly loves to do is play Minecraft on the PlayStation or Xbox.  This is how he passes the time during his IVIG infusions. Unfortunately, he's begun struggling with this lately. He can still build some pretty amazing things, but he's forgetting what buttons do what. This means that building is becoming very frustrating for him because he's constantly pressing the wrong button and accidently destroying what he builds. This is a newer issue and I'm not entirely sure what to make of it. Using a controller seems like a muscle memory kinda thing and aside from reminding him…

12 Comments
May 3, 2017
Read more about the article How has #Autism impacted your life today
#Autism Discussions / My thoughts

How has #Autism impacted your life today

It's incredibly important we talk about how Autism can impact a family. This isn't about blaming a child or hating Autism. This is about dealing with the reality of what is very likely, a difficult situation. It's important for people to understand the ways that raising a child with Autism can impact the family unit. It's sadly taboo for a parent to be honest about the challenges they face while raising a child with Autism. I've called bullshit on that for the last eight or nine years that I've been a public figure in the Autism community. Reality isn't always pleasant and it's certainly not always pretty. The reality when it comes to Autism, exemplifies the above sentence. How can we expect the people around us to better understand Autism…

6 Comments
May 3, 2017