The elephant in the room for special needs parents
There are many things that special needs parents worry about, and I would imagine some of those things are very different depending on what diagnosis your child has. There IS one thing that I’d like to believe is the same for all of us. It’s a question, but a question that we never imagined being faced with answering, when deciding to embark of the journey of parenting.
What will happen to my child when I am no longer here?
Chances are, nowadays you know someone who is challenged with some type of disability. Most likely, that person lives with a parent, family member or caregiver who will be facing the exact question that I just posed at some point as they get older. Whether your child has a disability such as autism, or a progressive neurological disease like MLD, the worry is no different. There are more young adults today with some form of disability, where it will make living on their own a slim possibility.
So then we are faced with the question, who will be the one tasked with this huge responsibility to take care of our “child” (children) when we are no longer here.
It’s not something talked about too often, and I am sure it’s not something that parents, like myself and Hut even like to think about, but I do know we all hope in some way we will never have to make this decision.
The amount of anxiety that I have personally felt over this, is beyond anything I could ever describe. I live for today as I have slowly learned, but in the moments of silence, or the darkness of the night when all you can hear are your own thoughts, this is the ONE thing that I come back too more often than I like.
What is the answer?
It’s not simple, it’s hard, and for some, it’s impossible to contemplate this question and actually come up with an answer. There isn’t just one solution, in my opinion, there has to be many… or at least a couple.
Siblings – For us, this is not even an option that we would explore. Eric and Evan were not put on this earth to take care of their siblings. They have their own dreams to chase and we want to see them chase them and live their own life. Some people might not agree with this and I get it. It is a very personal decision. Once again, a decision that no one wants to have to think about.
Group home – Of course this has to be an option that people consider, but it definitely is not one that we want to think about either. Why, you may ask. I know people who have had to make this choice and once again, I get it. There are so many things to contemplate with this:
1. Vulnerability – Your child is vulnerable and cannot properly advocate for themselves or make the smartest decisions. They trust too much, which can definitely be a bad thing.
2. Safety – I’m sure we have all talked about the safety of group homes, or assisted living at some point. Maybe you know someone who was not taken care of properly. Many centers cannot have cameras in certain areas for privacy. How will you ever know if your child is ok and being taken care of?
3. Abuse – You don’t want to think about it, talk about it, or believe it, but it happens. When those that can’t fully take care of themselves have to rely on others, this is always a possibility. (Can you tell I have trust issues) It happens, we all know it does, but when the possibility becomes worrying that it could be YOUR child that it happens to, you want to find any other way to have your child taken care of.
Per the CDC, 1/36 kids are now diagnosed with autism. Out of those, 40% are non verbal and 31% have an intellectual disability as well. Can you imagine!! How many of these children will grow up being able to live on their own?!!
It’s going to be a huge problem as these special children like ours, and maybe yours grow into young adults and their parents continue to age, and possibly get sick or die. Yeah, it’s depressing but it’s something that needs to be talked about.
I know we are not alone with this worry or fear. I also know that our expectations might be different than others. It’s ok. We are allowed to disagree or have different opinions. The one thing we all can agree on, is many of us will be in the same boat one day, wondering the next steps of our adult children.
Knowing that I am not alone with these thoughts is comforting, I just wish these thoughts were not something that I ever had to contemplate.
If you are a special needs parent and have thought about this, please reach out. We need to support each other, especially in realizing that we are not alone!
I have a dream, and it’s big. One day I hope to see that dream come true, so parents like us know that our child (children) will be safe and well taken care of when we can no longer be here to do so.
Fear Not 