The only thing that could make it worse

It was rougher night last night because Emmett woke up about 2 AM and was unable to go back to sleep. If at all possible, I don't like to go to sleep while one or more of the kids are awake, especially in the middle of the night. I've been known to grab a nap on the couch while the kids are watching a movie or something but I'm right there in case anything happens. I assume that Emmett had a nightmare again but he doesn't like to talk about it and if I ask, he gets upset. Generally speaking, nightmares will wake him up and make it difficult for him to go back to sleep. He and I ended up sleeping in the living room last night. It took…

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The good kind of exhausted

We're beginning another four day weekend tonight. We're also bracing for a some bad winter weather as well. I think we're just going to keep things mellow tonight. Maybe order a pizza and watch some Netflix with the kids. I've had a pretty decent day. I didn't sleep well last night but after a morning nap, I was able to get some work done, get the boys home from school and even squeeze in a TRX workout as well. I've got to admit, I'm fricking exhausted but it's the good kind of exhausted. ☺

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Finally, some good news

About mid-morning, I received a phone call from the pharmacy responsible for my recent stress level increase. They informed me that Gavin's pump had to be ordered, but it had arrived and was going to be delivered today. I'm glad it's going to be here today, assume it arrives because it hasn't yet. The frustrating part remains though. When it's known that something is this important and it won't arrive when promised, a quick phone call would have alleviated a great deal of stress from the last week or so. Shit, for that matter a returned phone call would have worked as well. At this point, as long as it arrives today and Gavin can do his infusion in the morning without having to worry about the pump dying on…

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I’m really getting pissed

I left a third message at the pharmacy that supplies Gavin's IVIG infusion supplies. You can't just get these anywhere, as they are considered specialized items or something to that effect. The pump that Gavin's been using for his IVIG infusions is going bad. It's about five years old. It's successfully delivered nearly five hundred infusions for Gavin but it's on its last leg. It no longer applies consistent pressure and that makes for a difficult infusion. I called on January 2nd to have a new one delivered. I was promised it would be here by last Friday, in time for Gavin's infusion that day. It never arrived and they never provided an explanation as to why. As I stated above, I've left three messages this week alone and not…

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We had some time to ourselves today

Lizze and I had some time to ourselves today because the boys were at school and Gavin was at my parents. We had to run some errands and while we were out, we began making plans for this year's tax return. There are a few things we want to do and some that we need to do. We need to get Ruby fixed and we can't do that until late February because she's in heat at the moment. We need to replace some furniture in our living room because what we have is in bad shape. We need to replace the curtains in Gavin's room and have been looking at Cactus Curtains for ideas. We need to replace some dishes and silverware. We also need to get the ferrets in…

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(Discussion) How do you know when, if ever to mainstream your child with #Autism?

Lizze and I have been debating this for the last few school years but either can't agree or just don't know what to do. This debate or discussion is in regards to whether or not Elliott and Emmett's current school is going to prepare them for higher education adequately. Elliott and Emmett are both in grade school and have been at their current school since kindergarten or first grade. This school is specially designed for kids with Autism and are surrounded by a blend of neurotypical, spectrum and ADHD kids. The curriculum is built from the ground up to be supportive and meet at least most of the needs that a child with Autism would have in the school environment. Lizze and I both agree that we have concerns about…

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Why family therapy is important, especially for special needs families

One of the reasons we have maintained family therapy for all this time is because it's so easy to overlook things when it comes to the emotional health of our special needs kids. Last night is a great example of when we learned things that we hadn't known prior. This newfound knowledge helps us to address things that are upsetting one of more of the kids. We spent Tuesday night focused on Gavin. Dr. Pattie needed brought up to speed because Gavin's had several appointments since the last time she saw him and it's important that everyone be on the same page. Gavin had mentioned that he needed to talk about one of his recent missions. These missions are the result of schizoohrenic hallucinations and while they are very real…

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I’m grateful for the mornings like this

The boys had a good morning and Lizze did a great job of getting them ready for school. All I had to do was physically drive them there. Good mornings like this don't come around as often as I'd like, but when they do I'm certainly grateful. Life is full of ups and downs. When you're a special needs parent, those highs and lows tend to be more extreme. Unfortunately, there's nothing that can be done aside from riding the wave at times.

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