Read more about the article How is this even f*cking possible?
Gavin / IVIG Infusion / My thoughts

How is this even f*cking possible?

While I was driving the kids to school this morning, I received a phone call from Akron Children's Hospital. It was the delivery coordinator for Gavin's IVIG infusion supplies. I could tell by the frustration in his voice that I was going to need a few minutes. I spoke with him before walking the boys into the school and working on the Emmett stuff from the previous post. Turns out Gavin's supplies aren't here because there's another nationwide shortage of his life saving medication. It's literally impossible to get and the only option is to switch him to a new medication for a third time. This is never a good thing because we have no idea if the medication will work for him or if he will have a bad…

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January 29, 2019
Read more about the article It’s killing me to see Emmett like this
Autism Parenting Struggles / Emmett John / My thoughts

It’s killing me to see Emmett like this

Lizze and I have been bombarded with challenges this morning. Right now, I'm going to focus on the Emmett related ones. Emmett woke up not feeling well again, and struggling to get off to school. We're trying to find a balance between getting him to school and keeping him home because he's in too much pain or discomfort. It's not easy but thankfully, Emmett desperately wants to be in school, so if he ever doesn't want to go, we know something is wrong. Lizze tackled lunches and I worked with Emmett to come up with a plan that got him to school but that he was comfortable with. He ended up being willing to try for a little while. We got to school and I spoke with the office, his…

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January 29, 2019
Read more about the article Gavin’s #IVIG infusion supplies never showed up and that worries me
Gavin / IVIG Infusion / My thoughts

Gavin’s #IVIG infusion supplies never showed up and that worries me

Without going into the backstory again, Gavin is on IVIG twice a week because of his severely compromised immune system. You can read that backstory here. We received a notice from his insurance that they were no longer working with his current, longtime supplier and would be switching to a new company. This is potentially very problematic because this needs to run like a well oiled machine or there can be delays in his deliveries and that could potentially be life threatening. Lizze and I haven't even had a chance to call about this and we're already having a major problem. Gavin supplies were due to arrive last Friday and they never did. They also never arrived today and that means he's missed his infusion. He's missed quite a few…

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January 29, 2019
Read more about the article I took my 3 #Autistic kids to the dentist today and this was the result
Autism Parenting Struggles / My thoughts

I took my 3 #Autistic kids to the dentist today and this was the result

We're finally home from our out-of-town trip to the dentist. I ended up having to take the boys on my own. Lizze was ready to go with us but it was obvious that she was really, really pushing herself. As much as I needed her help and as much as I truly appreciate her willingness to go even though she was in so much pain, it was best for her to stay home. The boys and I left around lunchtime and made it there a few minutes early. It took about 45 minutes to get there and traffic was pretty good. Elliott was on the verge of a panic attack because all doctors terrify him. We're not sure what that's all about but he's always been this way and there's…

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January 28, 2019
Read more about the article I’m taking my 3 #Autistic kids to the dentist this morning
Autism Parenting Struggles / My thoughts

I’m taking my 3 #Autistic kids to the dentist this morning

Later this morning, I'll be taking all 3 boys to the dentist. If that weren't challenging enough, I may be doing this alone. Lizze was sick for most of the day yesterday and I'm not sure how she's doing today. I know she wants to go but there's only so much she can do. I'm not super thrilled about this but we'll figure it out. I don't anticipate any issues while at the dentist. The only one I know who has a potential problem is Emmett. He recently lost a tooth with a metal cap. The tooth behind it appears to have been damaged by the metal cap. It's hard to describe but it's only a baby tooth, so I don't expect them to aggressively do anything. Emmett isn't in…

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January 28, 2019
Read more about the article How do you prioritize anything when everything is a priority?
Autism Parenting Struggles / Inspirational Posts / My thoughts

How do you prioritize anything when everything is a priority?

As an Autism and Special Needs parent, I've found it very difficult is prioritize things. In a more typical situation, I would be able to decide what's important and what can be put in hold or brushed aside. Unfortunately, in my life, it's not that simple. Everyone in my house has very demanding needs and all of them are of equal importance, especially to the person concerned. While there are things that can always be put on hold, usually everything that's considered more everyday life kinda things, the vast majority can't. It's very difficult for me because in order to meet one person's needs, it feels like someone else's will have to go unmet and that's not okay. If one person has a 100 things that require their undivided attention,…

2 Comments
January 27, 2019
Read more about the article I don’t know what we’re going to do because Emmett keeps getting sick when he eats
Autism Parenting Struggles / Emmett John / My thoughts

I don’t know what we’re going to do because Emmett keeps getting sick when he eats

This post was originally meant to publish on Friday morning. This morning was a fucking nightmare. We're trying to work with Emmett to figure out why he's not feeling well, and at the same time, keep him in school as often as possible. His grades aren't an issue but new, very strict truancy laws are. Emmett woke up this morning and wasn't feeling well. His stomach was upset again and he was unable to eat. We've known about these stomach aches for a long time and we've been treating them as though are related to stress because we've ruled other medical issues out. It turns out that Emmett is getting nauseated everytime he eats. Sometimes this also results in abdominal pain but it's not indicative of anything specific. Autism, sensory,…

3 Comments
January 27, 2019