This week’s Finish The Sentence Friday prompt is: “I’m really afraid that/of…”
If you have been around here for any length of time, you know all too well what my nightmares are made of.
Dying, of course. I am sure that most people could say that they are afraid of dying, but when you have a child with autism, fearing your own death takes a whole new turn.
When DC was young, my greatest fear, being a single mother (and before that, having a husband that worked nights) was something happening to me and worrying about just how long it would be before someone/anyone realized that DC was alone.
And then he grew up….
As I have written about this subject many times, I am just going to give you excerpts of some of the previous posts that were written about this subject.. He is 26 (almost 27) now.
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DC is 24 years old. He is a happy guy. He has a good life. He is the joy of my life. But even with all that he has accomplished the bottom line is, he will never be able to live on his own without full support. He will never be able to take care of himself. He does not understand safety. He does not understand many many things. He has no siblings. Even though his father and I have taken steps to be sure he is provided for, and have designated guardians in the event that anything should happen to both of us, those people are all my age or close to it. He will long out live all of us and realistically I should be looking at people his age, but I really do not have any options in that age group – again, he doesn’t have brothers or sisters. He will probably have to live in some sort of group home type environment with strangers and no one to look out for him. Dependent on strangers. At the mercy of strangers. This is devastating to me. It is what keeps me awake at night. It breaks my heart already.
He deserves to live the rest his life just as happily as he lives now; and that is the one thing I cannot promise him.
From: Insert Colorful Metaphor
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When your child with Autism becomes an adult with Autism and your own mortality begins to slap you in the face, it becomes a whole different ball game.
Our “kids” are going to outlive us, people. Who’s going to take care of them? Will they be cared for in the same fashion that we have cared for them? How drastically will their life change then? Think about it.
If I haven’t said it a hundred times, then let this be the hundredth; if I were to live forever, I would not change a thing about my son. He’s happy almost all of the time. He loves his life. He is in his own little happy world, but he won’t always be able to live in his own world, he will someday have to live in the real world. Then what?
From: Dear Abby; Feeling Chastised in New England
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If this is not enough to worry about, there is the other issue of him really not understanding death:
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On the way home from my mother’s house the night my step-father passed away, I mentioned to Doug that I still was not really sure that DC understands what death means and how much I really want him to understand it.
Doug asked me why it is so important to me that DC understands. Why couldn’t I just let him believe what he believes, the way he believes it and leave it at that?
I understand that thought process. I understand wanting to protect him from anything bad or sad, I do. So why is it so important to me that he does understand?
“Because one day I am going to die and I want him to understand that it is not something one wants to do. I never want him to think that it was my choice. I NEVER want him to think that I just left him.”
From: Understanding Death it not like a Disney Movie
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This has been a Finish the Sentence Friday Post. This week’s prompt: “I’m really afraid that/of…”
Finish The Sentence Friday is a link-up where writers and bloggers come together to share their themselves with a particular prompt (different formats each week of the month). Please visit Kristi or Kenya to read more submissions on “I’m really afraid that/of…”
Taking it a Step at a Time 
Funny, I just stopped by to read and then noticed your title was applicable to today’s prompt. Thanks for linking up! 😉
It seems that being afraid of death is a common theme here today. I don’t know how to comfort you anymore than I can comfort myself in that thought. It’s a place that I do not like to dwel. We can only hope and pray that “it’ll be fine” when the time comes. But 😩.
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I Know. (I was just trying to comment on your post) But I get it.
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I’m so sorry. I wish I had more I could say than that. I hope that, someday, you meet someone younger who CAN commit to helping DC. I wish our world worked differently, and I just wanted to tell you that.
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Thank you. I hope so too.
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I have the fear of death and my special needs children too. They do have siblings, and I pray they are willing to guide and help them when I am gone. Thanks for sharing these fears. I think most of us moms of unique children have that fear.
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Yes, I am sure most of us do. Thank you for reading and commenting
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I totally understand that fear of dying, but after reading your article truly brought a new meaning to me. I mean neither of my girls have autism and for all intents and purposes will indeed live their own lives OK as they get older. But still, I worry about when I am not here for them down the road. Possibly for different reasons, but still breaks my heart just thinking about my girls not having me in their lives someday. I guess just a mom thing, but still a fear for me nonetheless.
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Yes, I’m sure it is a Mom thing/fear, special needs or not. Thank you for your comment.
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I fear for the future for both my kids, especially my autistic daughter. I’m terrified od dying too young before I’ve helped her be ready for the world. Totally get what you wrote xx
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Thank you – ❤️❤️
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Yes, yes yes. The fear of dying is huge, for me, too. And when you’re not sure what’s going to happen to your child, that makes it so much harder. I worry about Tucker not having siblings too, but it’s not something I can easily change now so… still so scary. But, I also do believe that they’re really truly going to be ok. One way or another. Oh! And yes, I completely understand the desire for DC to know you didn’t want to die…
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Way too late for me to do anything about his sibling status as well (way too late)
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This is something that most parents of children who have special needs face and it is such a dilemma and a worry. Even with careful planning, the unexpected can get thrown into the mix. I’m thankful for the support groups via the internet and otherwise so that parents don’t have to feel so alone in facing these fears.
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The unexpected …. don’t I know that.
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the thing about participating in bloghops (besides the opportunity to practice this ‘writing thing’) that I enjoy the most is the glimpse into real people’s real lives. not giant, story-arcing perfectly nuanced, shown-not-told that so much fiction is, but a look into a life. I sometimes use the word ‘witness’, in a non-religious sense but still mutually-beneficial relationship between ‘reader’ and ‘writer’.
Thanks for the glimpse.
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You are very welcome. Thank you for reading
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The same nightmare I have as well. It’s why I pray so much. XOXO
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❤️❤️
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You articulate this fear so beautifully, and I know it’s a fear that all parents of children with special needs have. I wish I could say or do something to alleviate your fears. There are going to be many, many adults with special needs who require caregiving as their parents age and pass away…our country needs to recognize this and plan for this reality.
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This country absolutely does need to do more. The fear is never far from my mind.
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Wow, what Dana said -you articulate that fear beautifully. I think every parent fears death, but in different degrees and for different reasons. To be a parent of a special needs child is something I don’t know, but I have heard the fears so deeply.
My father died when I was a toddler so I’ve forever feared doing that to my kids too.
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I’m sorry about your father and I can understand that fear about doing the same to your kids. Thank you for reading and thank you so much for the comment.
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This breaks my heart in so many ways. I am around DCs age, but my mother grew up with a cousin who had special needs. (I think he would be 5 to 10 years older tham you I think Vickie). He lived at his parents home his whole life ,but by the time he was in his 40s his parents were in their 80s. They worried constantly about him. Our family had a plan in place, but that didnt help much. He worried about ut. His parenta worried about it. In a strange twist of fate, after his father became ill my mothers cousin died. The doctors couldnt figure out why and eventually said that they think he literally worried himself to death about his father possibly dying. We were all heart broken (none of us more so than his parents).
I wish there was a program that would allow interested younger people/families to help fill in this gap. The program could connect you with these people and do background checks ert. Then They could start getting to know you and dc now and be a part of your lives. Then (hopefully many many many many yeara from now) when your time came, there would be someone with an established connection to help. Perhaps that would make this fear less big. (Day dreaming out loud I guess.)
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What a sad story. My heart breaks just reading it. I do love absolutely love your idea though. I wonder if there is something like that in place already. I’ll have to do some research. Thank you for commenting.
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