Read more about the article #Autism Parenting: Picking the BEST of the WORST options
Autism Parenting Struggles / My thoughts / School Related Issues

#Autism Parenting: Picking the BEST of the WORST options

We have therapy for the boys tonight but Lizze isn't feeling well and she will probably stay behind. It will likely be the boys and I heading out tonight. Tonight's focus is going to be on school for Elliott and Emmett. We have to figure something out because while the boys like school, they're also miserable at the same time, albeit for different reasons. This needs to be a very serious discussion about our options. I'm hoping Lizze feels up to going but but if not, we've discussed it amongst ourselves already and have reached a consensus. We both agree that the status quo isn't in the best interest of the kids. What we do about it is where we become less sure of ourselves. At this point, I feel…

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January 30, 2018
Read more about the article Exploring The Great Outdoors With Your Autistic Children
Contributed / My thoughts / Sponsored Post

Exploring The Great Outdoors With Your Autistic Children

This is a collaborative post and does not necessarily reflect the views and opinions of the author or this blog.. Image Credit Most parents of children with autism will be familiar with one of the major calling cards of the condition: a tendency towards insular behavior. Children (and adults) with autism have a tendency towards over-focus, zooming in on a subject that interests them to the exclusion of everything else in the world. Persuading your child to step away from this interest can be troublesome; it may even cause arguments. As a result, the idea of exploring the great outdoors with your children is troublesome both, for this reason, and for the fact that heading out on a hike or bike ride is a disruption to their routine-- another issue…

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January 30, 2018
Read more about the article Review: Is the EcoQube C a great project for kids with #Autism? (@DesignADI)
My thoughts / Reviews

Review: Is the EcoQube C a great project for kids with #Autism? (@DesignADI)

This review is brought to you by EcoQube. They were kind enough to send me an EcoQube C to put together with my kids and help raise some Autism Awareness. I'm always on the lookout for projects I can work on with my kids. I really like to present my kids with things they can do that don't revolve around video games or tablets. When I came across EcoQube, I thought it would be a fantastic project to do with my kids. I reached out to EcoQube and explained what I was looking to do. They were super excited to be a part of raising Awareness for people with Autism and their families. I was sent the EcoQube C because that's a really good place to start and it's something…

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January 30, 2018
Read more about the article I have enough to worry about already
My thoughts

I have enough to worry about already

Elliott is off to school while Emmett is home because of a fever flare. I'm really proud of Elliott because he did awesome this morning. Neither one of the boys likes going to school without the other but Elliott has been be very good about it this week. Emmett is in rough shape but is currently working on his makeup work with Lizze. I sent the school pictures of his mouth and that helps to document his absence. I've been stressed out because of these new truancy laws in Ohio but I've recently decided not to give a single shit about them. Here's the thing - these laws were not written with kids like Emmett in mind. He's living with medical issues that can often interfere with school attendance. We're…

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January 30, 2018
Read more about the article Special Needs Parenting – What it feels like to watch your kids suffer
Inspirational Posts / My thoughts / PFAPA

Special Needs Parenting – What it feels like to watch your kids suffer

I've been working for almost a decade to help people better understand what Special Needs Parents go through. Whether it's Autism, ADHD or even fragile health, there's a story to be told and insight to be gained by reading it. Every family's experience can and will be different. Even families dealing with the same diagnostic challenges can and will experience different problems, even though their kids share the same diagnosis. I wanted to attempt to explain what it feels like having to powerlessly watch my kids suffer. The most recent experience I've had, I'm stilling actively living through, and it's in regards to Emmett. Emmett has been living with a very rare fever disorder known as PFAPA. The disorder means that Emmett runs idiopathic fevers. Idiopathic means that the fevers…

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January 29, 2018
Read more about the article It’s all about Gavin this morning
Gavin / My thoughts

It’s all about Gavin this morning

Gavin's bloodwork is done for the week and I'll follow up with the pharmacy this afternoon. I need to remind them to have his medication delivered by Wednesday evening. There's plenty of time for them to get the results and gain approval in order to release another seven days worth of pills. Next up for the day is Gavin's IVIG infusion. We actually just received a resupply of his infusion meds on Friday and so we are good to go for the next thirty days. They've been doing a lot better with Gavin's infusion supplies lately and that's awesome. As a parent, it's stressful enough just knowing your child has all these life threatening health conditions. Worrying about if/when their medications will arrive and arrive correctly is just that much…

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January 29, 2018
Read more about the article How my appointment went
My thoughts

How my appointment went

My meeting with HEAP went as expected. It wasn't great but it wasn't terrible either. This does help us with our utilities by leveling out the payments. As an example, we now pay $130/month for gas and $130/month for electric. It's very similar to being on a budget. The upside is if the actual amount due is higher than the $130/month, we only pay the $130.00. The downside is just the opposite. If we owe less, we pay the $130.00 anyway. It's a give and take. The set monthly payment is part of the PIPP program. HEAP helps pay down your balance by making a one time payment to each utility. My appointment today was actually a PIPP reverification. In the reverification process, our monthly payment has almost doubled. If…

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January 29, 2018
Read more about the article Please keep Emmett in your thoughts and prayers
Emmett John / My thoughts / PFAPA

Please keep Emmett in your thoughts and prayers

I mentioned that Emmett would be home from school today. The reason for that is rather bad fever flare. I'm pretty sure it started on Saturday because that when the physical symptoms began. At first, it was just one sore on the inside of his lip, but as of Sunday evening, he's got several more. The poor kid is in a lot of pain and isn't eating much as a result. He doesn't eat enough on a good day, and this makes things worse. Right now I'm making him milkshakes and mixing SlimFast powder in for some nutrition. These are cold and numb his mouth enough that he can relax a bit. Unfortunately, it doesn't last forever, and he goes right back to being miserable. There isn't much we can…

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January 29, 2018