Not a day goes by that I don’t think, “What is going to happen to Trenton when I am gone?” It is a thought that no parent should ever have to think about. Truth be told, if my child did not have autism or any disability, I would not even be thinking about this. However, that question haunts me daily.
Oh sure, there are days that I don’t worry about it as much. Then there are the days where it gets the best of me. It is my greatest worry and fear. Who will take care of my precious child when I am 6 feet under? Will he be cared for and loved? Will they make sure he is bathed and fed? Will he be happy? Will he know and understand that I just didn’t up and leave because I wanted to? Will he understand death and know that it is a part of life?
It would be different if I had a neurotypical child. I would not think about that dreadful thought as much. However, for the families much like mine, who have all of their children on the spectrum, we worry about this to a very high degree.
I tell myself to let go and let God handle it all but that is hard. It is much easier said than done!
No parent wants to close their eyes in death knowing that they are leaving a child in a residential home to be cared for by others. I have heard many comments in my life how there are great workers in the many residential homes. It doesn’t matter how nice the residential home may be or how nice the workers may be, no one can take better care of a person than their mother or family member.
I want to die knowing my child is married and raising a family of his own. I want to know on the day of my death that my child can take care of not only himself, but his family too. Sadly, families raising children with autism very rarely get the reassurance that their child is going to be just fine in life when they are gone.
We often hear how mothers worry about their children even when they are grown. I never understood that until I became a mother. Now I know why my mother always worried about me even after I was grown and on my own. Simply put, mothers never stop worrying. Therefore, the degree of “worry” is multiplied by 100 when your children have autism.
So, yes, the horrible thought that no parent should ever have to think about weighs heavily on my mind and heart daily. Who will take care of my children when I am gone? The daily stress of this thought will never go away because it is real. It is going to happen whether I want it to or not.
I can try to explain this worry to others but the only people who really understand and “get it” are the other parents of children with autism or other disabilities. They know what it feels like to have this heavy worry on their shoulders daily.
So, to the mothers and fathers out there that have this worry every single day too, you are not alone. It is real. It is normal. We have many worries and fears in our life raising our children with autism. If you are like me, you don’t want to even think about this daunting thought but how can we not think about it? So, if you have a day where you shed countless tears over this thought that is okay! We are human. Our journey is not an easy one and it will never be easy. Cry. Scream. Kick. Do whatever makes you feel better! You are subject to that from time to time.
We just have to take one day at a time even if it is full of worry and heartache.
Angela and her family reside in Terre Haute, Indiana, where they moved to get more help for her son with severe autism. She was born and raised in a small town in southern Illinois where her love for animals and helping others blossomed.
She enjoys sharing the honest and real side of autism through her writing. Her writing may not apply to every family with a child with autism, but it is sure to apply to the families raising children on the severe end of the spectrum.