The #1 thing all #Autism Parents worry about and it’s not what you think

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Over the last decade, I’ve put a great deal of focus on the fact that all people touch by Autism are unique and not cookie cutter copies of each other. I also stressed the same applies to Autism families as well because no two are exactly the same.

Both of these statements are true and sadly, too many people still don’t grasp this concept. Stereotypes and assumptions still abound when it comes to anything Autism related.

This post isn’t about reiterating the same old facts all over again.

Instead, this post is about the number the one worry that all Autism parents share. Aside from loving our kids with Autism unconditionally and without limits, this is one thing that in my experience is absolutely universal.

One might assume that we worry about things like bullying or how our kids with Autism are received by society in general. Maybe we worry about school, IEP’s and fighting for needed services.

Those things are all true and they tend to be common worries.

What I’m talking about however, is something much scarier for an Autism parent.

That fear is simply put, what will happen to my child with Autism, if/when something happens to me? This is responsible for many sleepless nights.

No parent likes the idea of leaving this life and forcing their child to live without them. It’s heartbreaking for any parent to contemplate their own mortality and how it will impact their child or children.

In most cases however, as devastating as losing a parent is for a child, they will still grow up, if they aren’t already and eventually move on with their lives. They will take all they’ve been taught along the way and use it to build their own life.

The reason it’s different for Autism parents is because our kids are different. Many of our kids with Autism will need to be cared for their entire life. They are unable to care for themselves and simply couldn’t survive on their own. Our oldest Gavin, is a perfect example of that.

Even thinking about what will happen to our child after we’re gone is a terrifying experience. So many of us live in fear of this because we don’t know what to do with it.

So many of our kids will need us to care for them throughout the duration of our natural lives.

If you were to ask random Autism parents, what their single biggest fear is, majority of them would probably say that they fear what will become of their child should something happen to them.

Rob Gorski

Full time, work from home single Dad to my 3 amazing boys. Oh...and creator fo this blog. :-)
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Kim gebhardt

Rob, a living will is for medical decisions when someone can no longer give consent (such as taking someone off of life support). It will do NOTHING in terms of helping someone to make sure their children are taken care of. I know you’re trying to help people and I would hate for anyone to read and/or folow that and think that they had taken care of their kids. You hold yourself in high regard when it comes to having a voice in the autism community so it might be worth it to take a minute and research these types of things before hitting the ‘post’ button.

kimmy gebhardt

I do take that minute, but when someone is wanting to be a voice in the community and that voice is giving incorrect information (typo or not) then I’m going to point it out because if someone were to follow that advice or think that was all that needed to be done it could have a lasting impact on their situation.

kimmy gebhardt

” I’ve found myself in a position where I do have a great deal of influence in my community. While that doesn’t make me think highly of myself, it does mean that people look up to me and I take that very seriously. ”

And that right there is why I commented. I didn’t read your post looking to make corrections, but that was a huge error and I typed up a response to it. You didn’t like my response or the way I went about it and that’s fine. This has nothing to do with me fact checking; it has to do with me seeing it and knowing it was a mistake because I spent years working in the legal world, which is the same reason I tried to give you advice on Gavin’s guardianship last fall. I get that you are saying it’s a typo, but I genuinely didn’t want anyone to try to follow that advice. If that makes me a tactless troll without social skills, so be it.