What will happen to my kids with #Autism when I’m gone?

My pain is rooted in fear.

As an Autism Dad, I know first hand how difficult life is for my kids with Autism, some more than others. I know that Gavin for example, will never live on his own or take care of himself. He can’t hold a conventional job, if any at all or make really even make friends. His health both physical and emotional is fragile at best and I worry about him constantly.

I worry about what would happen to him or any of my kids if something happened to me. I worry about my wife and who would take care of them if I was gone. Lizze has a ton of health issues that limit her in many ways.

As 40 looms closer and closer, it’s like I’m staring my mortality right in the face.

More than ever, I’m thinking, fearing, dreading and losing sleep over the fact that I’m not always going to be here to take care of my kids with Autism. Elliott and Emmett will grow up and build a life of their own. They may face obstacles but they will find ways to live with them. Gavin will not and he’ll need 24/7 care/supervision.

There aren’t really preparations for something like that. I know there are options but in this moment and others like it, the only one that matters will no longer be possible once I’m gone.

For some reason, this is weighing heavy right now. When I try to pull away and shake it off, it’s like these thoughts have their own gravitational pull. I keep getting pulled back in.

I know that I will eventually move past this but for right now, this Autism Dad is terrified because I don’t know what will happen to my kids when I’m gone.

6 comments

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  1. We have the same thought s with our son too

  2. Absolutely same here.

  3. I totally understand it’s my greatest fear as well

    • Cindy Jones on August 21, 2018 at 5:42 pm
    • Reply

    Rob, with all the stress you have going on right now, why would you add this to the list? There is no guarantee that any of us will be here tomorrow, or hell even by the end of the day. Yes, some plans will have to be put in place for the boys when the time comes that you and Lizze are not able to or not here to care for them anymore, but losing sleep and stressing over it isn’t the answer. I’m not sure what type of support is available in the U.S.A. for persons with developmental disabilities but it’s something that you should look into. Not today or tomorrow, but it is something you should and need to explore.

  4. Rob, you might want to talk to more counselors of disabled adults living in a group home. Or really, any other specialist who is involved with dealing with this type of situation. I know when I’m facing upsetting type situations that it helps me to get information in dealing with said problem. The more you know, the better you can plan Gavin’s life and relieve some of your own anxiety.

  5. Im liking this tweet but i dont think i can read the artical. Its been a worry of mine for years

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