Read more about the article IVIG infusion supplies are late
Gavin / IVIG Infusion

IVIG infusion supplies are late

There's been a pretty major snag today. Gavin's IVIG infusion supplies have not yet arrived. It's been a few months since we've had any problems, and maybe they're out for delivery today, but it's put his infusion on hold.  The deliveries are somewhat unpredictable because they don't come out in the same day each month. Sometimes they're delivered early, sometimes they're late, and other times they're on time.  I have a call in but haven't heard back yet. For that matter, we still don't have his new sharps container that I ordered last week. I'm not sure what's going on.  The pharmacy policy is that expect your order, unless you hear from them.  I've not heard back from them, so everything should be okay, based on their instructions. 

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July 7, 2017
Read more about the article Optimistic about today
My thoughts

Optimistic about today

I'm super grateful that Elliott is still sleeping at 8:10 am. He's not been sleeping well for the last week or so, and he needs whatever sleep he can get.  I'd love to see him sleep in past 10 am if possible.  Emmett has already been up for awhile, as has Gavin. I woke about 7 am and I'm feeling tired but optimistic about today. 

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July 7, 2017
Read more about the article Sweet picture from our July 5th adventures
Family Time / Photography

Sweet picture from our July 5th adventures

I know these are a couple of days late but I wanted to share them anyway. On July 5th, one of my focuses was wearing my kids out, by keeping them busy all day long. It was dark from a perfect day but while Lizze was in class, I took the boys to the indoor playground and let them play for awhile. They ended up joining in a game of tag with the other kids that were there. It felt so nice to see them having fun with other kids in a playground. After Lizze arrived home from class, we went to the Garden Center as a family. The boys went exploring, and Gavin found several painted rocks, that he promptly re-hid somewhere in the giant garden, for others to…

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July 7, 2017
Read more about the article It’s fun to do weird things sometimes
General Update

It’s fun to do weird things sometimes

It's slated to be somewhat of a busy day. Gavin needs his IVIG infusion first thing in the morning, and then we have to go order his new glasses. We had to wait for payday to do that.  After we take care of all of those things, Lizze has two appointments around dinner time.  Her doctor is right by a Little Ceasars pizza and I'll probably swing by and grab one so the kids can eat while we're waiting. That's a super informal dinner but it's kinda fun to do weird things like that sometimes. The kids enjoy it and that's good enough for me. 

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July 7, 2017
Read more about the article Serves me right
My thoughts

Serves me right

I feel asleep on the couch this evening while Lizze was puting the kids down for the night. I've been so exhausted, I just passed out when things slowed down.  Unfortunately, it's now midnight and I'm not able to fall asleep. This sucks.. O_o

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July 7, 2017
Read more about the article Does anyone know what guilt free sleep is? 
Autism Parenting Insight / My thoughts

Does anyone know what guilt free sleep is? 

The boys left around lunch time and will be back around dinner time. Lizze has been hard at work on a class project, and I took a solid, three hour nap.  That's about the extent of our travels.  I can't explain how exhausting my daily life is. When I have a chance for some guilt free sleep, I take full advantage. Would it have been nice to do something? Of course it would have, but sometimes it's just not in the cards.   The level of exhaustion felt by an Autism parent is indescribable.  In many cases, sleep is a luxury we dont have, and neither is free time. When we do get a break, we have a choice. We can either gets some desperately needed sleep, or try and have…

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July 6, 2017
Read more about the article It’s really sad that it’s come to this
My thoughts

It’s really sad that it’s come to this

The boys will be going to my parents house for the day. We will be getting a nice little break this afternoon and my God do we need it.  I haven't even had a shitty night's sleep in almost a week. I'm so desperately looking for a nice long nap.  It's sad when you get some time to yourself and all you want to do is sleep. 

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July 6, 2017
Read more about the article We reached a unique and amazing milestone 
Gavin / Today's Victory

We reached a unique and amazing milestone 

Gavin's going to be eighteen years old in January, and I'm really trying to work on self-care type things with him. Things like showering, shaving, medications, personal hygiene, and even choosing appropriate clothes.  For the most part, showering, and medications are things that he can reliably do. Sometimes it can be hit or miss, but he really does a good job.  He's been shaving by himself with an electric razor for about a year or two. Sometimes he misses more than he gets, but he puts the effort in, and we just continue to practice.  Personal hygiene is something that we struggle with. Gavin is not very self-aware, and so he doesn't pay attention to food on his face, or toothpaste all over his mouth. This is definitely a work…

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July 6, 2017