I’m a frustrated #Autism Dad, and here are a few reasons why

I’m feeling frustrated because so far, the summer isn’t going how I’d like it to. I wanted to keep the kids moving, and have fun, but that’s not happening as much as I want it to. 

Emmett’s is in a flare, for the second time since school has been out, and that tends to dictate what we can or cannot do. It involves a great deal of sleepless nights, screaming, and fighting to get him to eat anything. It’s exhausting, and seems to last forever. 

When he’s feeling good and wanting to do something, Elliott will be in a place where he doesn’t want to do anything. 

Each of the three boys have very different special needs, and they are often in conflict with each other, making life especially difficult. It’s hard to do anything, because this is like an endless cycle. 

If there’s a time where the E’s are in sync with each other, and wanting to go do something, Gavin will be experiencing some health issue, limiting our ability to do things. 

This isn’t what I wanted for this summer. 

Lizze isn’t doing so good right now. The weather has been rough on her, and the chronic pain is wearing her down, making her anxious, and constantly exhausted. Even if I get all the boys on the same page, Lizze is often unable to go with us, because she’s too tired, or in too much pain. 

I totally get it, and certainly don’t blame her, because it’s not her fault. At the same time, it can get frustrating at times. 

We’ve already had quite a few unplanned things arise this Summer, and it’s going to limit the things I can do. 

Lizze has to permanently go on a very restricted diet, and it’s likely that Gavin will have to follow. This is putting a huge strain on our already limited grocery budget. Unfortunately, there’s no way around this aside from increasing my income to compensate, and that adds even more stress. 

I’d really like to have things go smoothly for once. If I could get everyone in the same place at the same time, maybe that would be possible. Unfortunately, it’s the getting everyone in the same place at the same time part, that’s proving to be a major obstacle. 

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kimmy gebhardt

I have a question about your food budget. Is your diet helping in that area? It would stand to reason that the less you eat the less you spend. Also, you’ve mentioned Slim Fast and a few other things you eat and they are all name brand. Does anyone make generic forms of the things you are using to help you with your diet? I know this is a somewhat simplistic approach to a difficult problem, but every penny counts when you are trying to stay within a tight budget. Just some food for thought. : )

Unable Pown

Is there no way to get disability or food stamps or something to cover the special diet with a doctor’s note or something?

Judi Freed (@jaflady)

That sounds so very difficult your frustration is very understandable. It is a lot to cope with so many different patterns and needs. Being the Rock can be exhausting. I hope you can carve out just a bit of time for you and maybe with each other separately. In the best of circumstances everyone all together seldom works out like the pictures in our heads – in the most well-meaning and together families it is the same.

kimmy gebhardt

I have a question about your food budget. Is your diet helping in that area? It would stand to reason that the less you eat the less you spend. Also, you’ve mentioned Slim Fast and a few other things you eat and they are all name brand. Does anyone make generic forms of the things you are using to help you with your diet? I know this is a somewhat simplistic approach to a difficult problem, but every penny counts when you are trying to stay within a tight budget. Just some food for thought. : )

Rob Gorski

The simple answer is no. My diet doesn’t make that much of a difference, because I wasn’t a major contributor to what kills our budget. I odder the SlimFast powder off of Amazon, and pay like $20/month for 78 shakes.

Our main issue is with special diets or sensory related diet constraints.

It’s not about blame at all, but if you follow the money, special diets are much more expensive. When it comes to dealing with the kids sensory related food issues, the boys don’t have expensive tastes, but the few foods they eat are expensive. If things aren’t prepared perfectly, they won’t touch them most of the time. There is no work around for this that I have been able to find.

With Lizze’s new diet, we haven’t even begun to try and piece that together yet. Her new diet is very restrictive and it’s going to be difficult to manage both of these challenging feeding requirements.

We’ve tried generic brands but the boys won’t touch them. As for generic of the SlimFast, I think I’m already getting a pretty good deal, but I can always reevaluate that.

I appreciate your comments and ideas. ☺

Unable Pown

Is there no way to get disability or food stamps or something to cover the special diet with a doctor’s note or something?

Rob Gorski

Yes and no. Special diet doesn’t matter. We have had food stamps, but when the kids got on disability, that dropped to almost nothing.

Judi Freed (@jaflady)

That sounds so very difficult your frustration is very understandable. It is a lot to cope with so many different patterns and needs. Being the Rock can be exhausting. I hope you can carve out just a bit of time for you and maybe with each other separately. In the best of circumstances everyone all together seldom works out like the pictures in our heads – in the most well-meaning and together families it is the same.

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