The quest for immortality..

I think most people are searching for the “fountain of youth”. They want to live forever.

But what you may not be aware of is that this topic is front and center forever in our family. The constant question in our hearts is “who will take care of him when we are gone?”.

There is so much pressure on special needs parents to care for their children forever.

When your special needs child is young, you have all of these hopes for their future. It may be difficult now but you think all of this hard work will pay off and your child will still live an independent life. But for some of us, as the child gets older and the gap between them and their peers grows larger, you start to stress about the future. You realize your path may be veering in the wrong direction.

Will he be able to move out of our house? Will he have a job? Will he have a girlfriend? Will he be able to dress himself in the morning? Will he be able to prepare his own food? Will he be able to cross the street safely? Will he drive a car? Will he go to college? Will he be happy?

These thoughts are in my head daily. I worry so much for his future. I worry for our future as his parents. I worry for the future of his siblings. Will our choices impact the rest of their lives as well?

Now that Z is a teenager, we have a better view of what our future may hold. And it is terrifying..

I remember early on with Z, we would be in public and I would see an old lady holding the arm of a young man. The young man was clearly special needs and I would look at the old lady with such respect. She looked tired. She looked worn. She looked stressed. But she looked happy. And I always thought how hard that must be for her. I felt pity for her.

But when I think about it now, I think I always assumed that would not be me. We always thought Z would eventually “get there”. And it has only been in the last couple of years that we have had to relook at this. To consider the alternative and how we will manage.

I will most likely be an old lady, taking care of this giant 6 foot man-child. I will most likely be tired, worn and stressed. I will most likely still believe my situation will get better. And I will most likely worry about how I will last just as long as he does in life.

I feel so much pressure with this. Like I cannot relax and settle into life. I cannot “settle into old age”. I have changed my eating habits and work out regularly. I have to figure out how to slow my aging process. How to keep up with him.

I worry every day about something happening to me. If I go for a drive and run through a yellow light, my first thought is “what if a car had hit me?” If I go on vacation and fly in an airplane, my thoughts throughout the flight are “what if the plane goes down?”. If I go for a hike and walk near a cliff, I think about falling off the edge. If I get sick or feel a weird pain in my chest, I fear the worst. During the pandemic, I feared that I would contract the virus and not survive.

When he has a meltdown and is physically aggressive, I think about what it will be like to go through this when I am older. I keep myself in shape so I can always support him and not be harmed. I need to be strong for him, not just mentally but physically.

This pressure can be crushing. I don’t think other parents understand the magnitude. For them, they are focused on the first 18 years (and let’s be honest, it is really only 14 years). From that point, the struggle becomes letting go. Allowing the child to become an adult and figuring out what they will do with their empty nest. The real fear is boredom.

Society just does not put the focus on our situation. Everything is geared to a “normal life”, to the “normal” progression of a child. The focus of services is “early intervention” with the promise that if you take all of the right steps they will “outgrow” their situation. Your life will be normal in the end. Services are few and far between for adults with special needs. There is virtually no support for the mental health of the parents. I can’t even imagine what it will feel like to be a caretaker for the next 40+ years.

And in the end, I can only do so much. Anything can happen to any of us at any point in time.

So now my husband and I are having conversations about who will support him if something happens with us. An obvious solution is that his older sisters would take over the care. But is that fair? How far off will that take them from the path they hoped to be on? Is it out job to protect them from “throwing their life away”? To protect them from this pressure, from this stress?

Other options include group homes. I am sure there are really great places and a multitude of success stories. I know there are also horror stories. And if we are not around, who will care if his experience is successful or not? Who will visit him and ensure that he is getting the appropriate care and services? Will he be forgotten at one of these institutions like in the old days?

As I am writing this, I feel the crushing pressure. I feel like there is not an answer. And there probably is not. We are doing all we can at this point to ensure we are putting measures in place for his care. Saving funds, exploring options, writing wills. Giving him 110% now with the hope that we will be wrong about his future. That things will suddenly “click” and he will be more self-sufficient.

And when the pressure gets too much, I simply go back on the quest for immortality. Because with all of this there is this stubborn naivety that I have that I will simply live as long as him, with the same energy I have now. That things will never get too hard, that we will be successful. And most of all that he will be happy.

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