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Autism Parenting Struggles4 min read

This is a perfect example of why being a #specialneeds parent can be so exhausting, frustrating and overwhelming

October 19, 2018

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This is a perfect example of why being a #specialneeds parent can be so exhausting, frustrating and overwhelming

We're not off to a good start today. I basically woke up to Elliott and Emmett fighting and it went downhill from there. I could have weathered the fighting but then Gavin entered my morning with news that very much pushed me over the edge.

Gavin casually approaches me and tells me that he's only got enough tubing for one last IVIG Infusion. I told him that's not possible because as you can see in the image below, there are supplies for 8 complete IVIG Infusions for the month of October. Maybe you can't see that from the image but I confirmed upon delivery, that he was *not* shorted anything.

Gavin should have enough supplies to do 4 more IVIG Infusions this month and he's basically saying that he's missing 4 sets of tubing.

When he said this, I assumed he was just missing or forgetting something. Gavin tends to overlook and/or miss things all the time. Oftentimes, he can't find something that's right in front of his face. That's not a put down, it's just the reality of his condition.

When I got downstairs, I had him pair everything up so we could more easily see what was missing, if anything at all.

Turns out he was missing 4 sets of tubing and 3 needle sets. I was getting pissed at this point because I know *for sure *that we had them and he's the only person who comes into contact with them after we inventory them.

Gavin was getting freaked out and frustrated. I was getting really frustrated because he kept insisting the supplies were there and when I pointed out that they quite obviously weren't, he said that we must have been shorted. My head was about to fucking explode because I know *for sure *that every single piece was accounted for when they arrived. I packed them together and gave them to Gavin.

We *were not *shorted, the problem is that Gavin somehow misplaced or lost them. I don't know how he could possibly lose them but he found a way.

Noone else in the house has access to the supplies and Gavin is the only person who puts his IVIG Infusions together.

The reason I'm so upset, aside from the fact that he's missing the supplies is because I just had an unpleasant conversation with the supply company about being shorted last month.

I hadn't been there when the supplier dropped them off for September and therefore didn't end up checking them. We were shorted supplies and I had to call them to send what was missing. They weren't happy about it and accused me of losing them.

Now I'm seriously wondering if we were actually shorted or if Gavin's fucking lost them as well. We recently caught him throwing tubing away by mistake.

We're currently tearing apart the dining room and the back room to try and locate them. I'll have to pay out of pocket if we can't find them and this is highly specialized equipment. It's expensive and it shouldn't have happened.

Going forward, we're going to have to restrict Gavin's independence in this area by locking the supplies up and physically handing him what he needs, when he needs it.

Hopefully, nothing was thrown away and it's just been misplaced. I'm not happy and this isn't how I wanted to start the day. If you read my last post, I've made it clear that I'm already in over my head. I don't need this right now.

What makes this even harder is that I'm trying really, really hard to not lose my cool with Gavin because he's not doing any of this on purpose. He's not trying to lose anything or be difficult. This is outside of his control and yelling at him isn't going to be productive, even if it might feel good in the moment. I'd feel like shit afterwards and I don't need that either.

Parenting a special needs child is very difficult. Parenting an adult child with special needs just might even be more challenging.

I have to remember to breathe.

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