Special Needs Future Planning

This is a huge topic for me because I am, by nature, a worrier. So there are plenty of things I can find to worry about, to obsess over. From the tiniest thing to the monstrous, I can obsess about anything. I could focus on what the future holds for all of our kids, if this pandemic will ever become endemic, or if our country will ever be united again.

I think for today, I’ll talk about the one thing that a lot of parents with kids with special needs worry about. What will happen to my kid when I’m gone?

Yes, he’s an adult. And we’ve done everything we can to make sure he’s taken care of. But what will actually happen to him?

We have a will and a trust set up for him (and his sister but hopefully she will be an adult and not need us as she does now in her teen years). We have life insurance policies (yes, multiple for each of us). We have talked to the person who would become his guardian and made plans with everyone that would need to know things about him. I have made a folder with important information about him and have one in each of our vehicles just in case. I also have a copy in my Google Drive.

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But, I’m not really talking about the planning aspect of this subject. I am a planner so it is no surprise that I have made all of the plans that I absolutely can make.

What I’m really worried about is what will his day-to-day look like? Will he end up in a group home? Probably. Or maybe he’ll live here with a live-in caregiver. I know that we would be able to make that happen financially. And I understand how lucky we are to be able to do that for him. But who is actually caring for him? Did my SIL hire someone to take care of him or is she hands-on like we are? Likely, they’ve hired someone. I wouldn’t want her to give up her life, especially when her own kids are grown and mostly flown.

Secondly, does he understand that we’re gone? That we’re never coming back? Does he miss us? Does he miss me? Does he miss hearing me sing to him? Maybe I should record myself singing to him now so he always has that. His Dad has made videos of him reading his favorite books to him. I’ve made videos of his life for him to watch, but no videos of me singing. He asks me to sing every day.

I wonder if he’ll miss me. As his primary caregiver, I hope he’s not sad. Ok, I hope he will miss me a little bit. We’ve lost people in our lives and he seems to just go on with living. I wonder if he’ll think I just up and left him. It breaks my heart to think he won’t really understand that I’m gone from this world. I hope we meet again someday.

Would his new caregiver understand his wants and needs? Would they make him peanut butter toast every morning because it’s his favorite? Would they know that his favorite song is Somewhere Over the Rainbow, or that his favorite TV show is Jack’s Big Music Show but you can only get it on YouTube? Would they know that he prefers to brush his teeth sitting on the toilet instead of standing over the sink? Will they know the nuances of getting him into and out of the van? Will they get that he’s really funny or even get to know him at all? If he’s in a group home, I worry about these things. I hope he doesn’t spend his life sitting in a wheelchair or lying in a bed when he can do so much more than that.

I am working on a day-to-day plan for him to have in place for the future. If someone else needs to take over for me and I'm not there to train them, they will need this guide. Be on the lookout for this planning guide - coming soon!

I go to sleep each night, praying for him and hoping that he knows how much he is loved by his mama. But I still worry about a future for him without me. I have to come to grips that he may have to live without me and that whatever happens, he will be okay.

A life without me for him might be a good thing. Perhaps, as I had a principal once tell me, I haven’t allowed him to be all that he can be. Perhaps I have held him back, though I don’t really think that’s at all possible. We have done everything we could to push him to be more independent. He is at a toddler level developmentally, so we just have to take care of everything for him. His living without me is incomprehensible to me. But someday, he may have to do just that.

I know that a lot of us hope that our child with special needs goes before us. It would be a blessing for him to not have to try to live a life without me. But I don’t know how I would survive without him. It would break me. I know I could keep getting up and going through the motions, but I don’t know if I would ever be happy again.

I know that I’m not alone in all of this. I know how lucky we are that he is as functional as he is, though it’s not as high as some. We are blessed that he’s as happy and as ambulatory as he is. I still worry that he’ll outlive me and I won’t have control of his daily life anymore.

I could go into a lot with my worries for Riley but I think she’ll be okay without me. It will suck for her for a long time, but I know from experience that living without your mother can be done.

So, there you have it. My biggest worry about the future for Jamie. What is your biggest worry for the future?