I read a post a few days ago from a mom who was worried about her son’s future. He was still a child, but she jokingly said that she had decided she could never die because who would take care of her son? Any parent of a child with special needs has had that same thought. I know I have – maybe not the never dying part, but definitely about the kids after I’m gone.
When they were diagnosed with autism, I didn’t think much about the future. My future was how to calm Casey down or what to make for supper that Rob would eat. I didn’t think too far in advance, because the here and now was almost more than I could handle. Now that life has settled (as much as it ever will, I think!) I think about the future more.
The thing is, I don’t think much about the kids’ care. I know Mandy and Cory will keep watch over them. I wish it wouldn’t be that way, as I worry that Mandy and Cory will let autism take over their lives and I never want that to happen. I know that even if Casey and Rob live in a residential home, they will visit them and keep a close eye on their care. Mandy denies letting them live away from family, but that’s a decision for the future, not now.
No, my biggest worry is that the kids will think I just left them. Casey talks about people dying and going to heaven, but I don’t know if she truly understands that Grandpa had no choice. I worry that she thinks heaven is like a vacation and sooner or later, everyone comes back. She will say heaven is forever, but I have no idea if she knows how long forever is.
Rob will say the names of people who have passed away, but he never says much else. I don’t know if he understands heaven or just thinks they have left. It makes me sick to think he might think I just left him. He worries so much about what people think about him – what if he thinks I just decided I didn’t want to be here and left? How can anyone explain to him that I didn’t have a choice – that it was my time?
Those are the thoughts that creep into my head at weird times. Usually when I’m tired and worried about everything else (you know how it is – you can never just worry about one thing at a time!) and can’t think straight about anything. I wonder if I’m doing enough to prepare them for their future, but I’m not sure what else I can do. I have heard parents move their child into a new home in preparation of being apart. I can see the wisdom in that – the adult will have a chance to handle all of the changes while they still have mom and dad for support, but what about when the parents pass away? Does the adult with autism just think they are at home and not coming?
That’s my biggest fear. That they will feel abandoned by the person who has always been there for them – taking care of them, helping them, loving them. I know Mandy will be there for them, but I still worry about that.
I do worry about their care and it scares me to death to think about someone abusing them or hurting them because I wasn’t there. Of course, I think about that now – every single time they are out of my sight. Just like every other parent in the world. I just worry more that they will always know I love them, even when they can’t see me.
I also know that there is little I can do to stop the worry. I don’t think about it often – certainly not every day, maybe not every week. It just hits me at times and shakes me to my very core.
So here’s my advice to you. Prepare what you can – write a will, set up a trust, buy life insurance – whatever you feel will help your child the most. Think about a guardian for your young child. Think about where your adult child might live. And then forget about it. If you spend every day worrying about a future that you can’t possibly know, you will miss the joy of today.
And that would be the saddest thing of all – if your child didn’t have a ton of happy memories of you! Toss off the worries and have some fun. Tomorrow will take care of itself.