Gavin seems to be struggling more today, and it’s heartbreaking

Gavin's had a rougher day thus far. He seems to be on edge, but there's no apparent reason why and if you ask him, he says he's fine. He had his IVIG Infusion this morning, and per the current norm, he did it all by himself. Unfortunately, he ran into a few snags and rather than merely address them; he freaked out instead. One issue was that the one injection site was leaking a little bit. This happens, and all we have to do is create a better seal at the infusion site. Gavin knows this, but instead, he chose to remove the needle all together which meant it would have to be placed back into his belly. That means more pain, and I don't know why he did that.…

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The weird things my son with #Autism says

The things I talk about in this post are not meant to be disrespectful for Gavin. If you're an Autism parent, you'll probably have at least some experience with your kid saying something weird in front of someone in public. They don't mean anything by it. It's just those pesky, awkward social and conversational skills.  We've all been there and it's okay to talk about these moments because if we don't have a sense of humor, we'll go crazy at a much faster pace.  It's a sign of a good day when I've made it this far without collapsing from exhaustion. 😁  The boys got off to school without too much headache and we really do appreciate the effort they put in to make that happen. Not having to deal…

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My son is missing his critical medications for the month

A large part of my stress load today is the result of Gavin's IVIG supplies never showing up.  I was contacted on Friday by the supplier who said that Gavin's shipment is delayed because they have been unable to get refills from the doctor. They were going to fix this yesterday but that never happened.  I spoke with Gavin's doctor today and they have never been contacted for a refill or it would have been done immediately. I believe them because we've never had a single issue with them in five or six years.  The doctor's office also stated that Gavin current script covers him through May of this year and he doesn't even need a refill yet.  They are currently working to resolve this and have checked in with…

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I’m heartbroken over forcing my son with #Autism to go to school today

I woke up exhausted, but in a good mood. That mood carried me through until it came time to get Emmett in his shoes and socks.  Lizze worked for quite some time with him on being able to tolerate his shoes and socks. Unfortunately, despite her best efforts and massive amounts of patience, we never resolved anything for more that a few minutes.   Emmett was okay with things until he got in the car and I began making the drive to school.  At this point he's freaking out, screaming and ripping his shoes off again. This lasted the entire trip to the school and I wasn't in the best place to deal with this.  When we got to school, I had to park the car because he wouldn't get…

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We have a problem that needs to be resolved today

If I had to describe how I slept last night, I would probably say shitty. I had a really hard time getting comfortable and would wake up because my back was killing me.  Then at some point, both Elliott and Emmett took turns waking up.  Despite a rough night, I'm actually in a pretty good mood. Lizze has an appointment this morning and Gavin and I will be walking while she's there.  We have a full day of appointments ahead of us today, as well as some problems to overcome. The biggest one being the fact that we haven't received Gavin's IVIG infusion supplies yet and were unable to perform his infusion yesterday.  Resolving this will be the priority today.  I hope everyone is having a decent Tuesday thus far.…

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When to hold a special needs child accountable 

I love having the boys home but I hate these four-day weekends because they totally throw me off the following week. All day today I thought it was Sunday because the boys were home from school. I'll end up being a day off for most of the week.  😁  Putting that aside, I think we had a pretty good extended weekend.  We didn't have the money to really go anywhere but we took the kids walking,  three out of the last four days. In total, we did about five or six miles and that's pretty good.  Emmett was in flipflops because he wouldn't tolerate his shoes but he only had a couple of issues within that five or six miles, where his feet were bothering him.  I'm hoping to make…

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We had such and awesome day today

We had a really awesome day. Aside from a few hiccups discussed in an earlier post, by all accounts we had a great day.  Lizze and I took the boys walking again today, right before dinner.  Unfortunately, we were competing with dusk and had to cut our walk short but I took all that into account when planning our turn around point. We ended up walking 2.02 miles and I didn't have to carry anyone. ☺  Emmett only had one my foot feels funny incident during the entire walk and that's awesome.   Our goal is to head out earlier in the day tomorrow and not so close to sundown. We'd like to do this as often as the weather allows because we're working on a healthier lifestyle and walking…

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Very Important Update About Gavin

It's been a trying day but I've learned one thing that I believe I can say with absolute confidence, Gavin off of Lithium is NOT a good thing.  I'm sure Lizze will put her two cents in at some point but having discussed this last night, I know she agrees. I suppose I should clarify that Gavin hasn't stopped taking Lithium completely but his dose has been cut in half and it's very clearly no longer effective. The purpose of doing this was to try and clear up some of his confusion. It's possible that being on the Lithium for ten years, in combination with the Clozapine, created a high level of confusion. Anyway, his dose was cut in half for thirty days in order to see if this was…

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