Wednesday, April 4, 2012

My Nest Will Never Be Empty

A friend posted this article on her Facebook page yesterday.

It is the story of how federal funds in America, that are meant to assist disabled individuals, are actually used to babysit them at best and to exploit them at worst. It made me really upset, but then I get upset pretty easily when I read about anything that exposes the way in which disabled persons are abused.

One form of abuse is underestimating the ability of the disabled person-whether cognitive or physical.

I once saw it described thus:

Imagine that you are sitting in the back seat of the car. You are hot and thirsty. There is a cold bottle of water in the front seat. Your mouth is taped shut and your limbs won't move. How do you ask for the drink of water? The simplest task-how can I get that sip of water, becomes your living hell, over and over again. Every day, another attempt to communicate, another battle to express the simplest thoughts and desires.

Dumping disabled people anywhere, like vegetables, assuming that they have nothing going on in their brain, is another form of abuse. 

There are many different kinds of disabilities.

There are people who are cognitively high functioning or almost 'age-appropriate' but are trapped in bodies that have betrayed them. There are those who have relatively able bodies, but can't think age appropriately. The same thing happens to people as they age. Sometimes the mind is the prison, and sometimes the body is the prison.

I can't say what's worse, or what's easier. It's all hypothetical.

But when I read articles, and reports such as the one above, sometimes the reality of having a special needs family member strikes very hard. But as I prefer to deal in reality and not in fantasy, I have to plan for a nest that will never be empty.

Some days that is easier to do than others.

Sometimes I picture myself, an older version, with my son, and the older version of my husband-the three of us taking a walk in the park, or doing the shopping. I picture him holding my arm, tagging along. I wonder if he'll ever sit with us through a movie? Will he go out with friends? Will he have people to see? Will I always be the director of his activities? How independent will he be?

What will we all do when I'm retired and he is no longer in school?

How will I ensure that he has as happy and as meaningful a life as possible?

How can I try to surround him with as many loving, unpaid companions and friends as possible?

When will I be able to allow myself to envision the days when I can no longer take care of him?

Most parents happily make plans for their Empty Nest. The occasional bouts of loneliness tempered by the joy of grandchildren, the relief of not working long hours, and the ability to live more leisurely-perhaps travel, entertain and take up hobbies or study new things.

It is entirely different as a parent to plan for the nest that never empties.

Not insurmountable, but entirely different.