I've been thinking about the issue of "cognitive impairment". First let me say a word about terminology. It used to be that we would refer to a person who was impaired from birth or early childhood as being "mentally retarded". The phrase was then used by bullies to taunt other children or even adults. It wasn't the words that were the problem but the bullies and whatever terminology we use I feel certain that bullies will use it against those they decide to pick on.
Now the politically correct term seems to be "intellectual disability" but I like cognitive impairment. No words, though, can adequately describe a complex and varied issue. Our grandson's ability to learn new skills was impaired from birth, his grandfather's ability to remember things and retain old skills lessens with age. Both are cognitively impaired.
What I want to discuss is what I have learned from watching my grandson for almost 19 years. His skill set is much like that of a toddler. He has no language, not speech or sign. There was a little progress in having him use pictures to indicate what he wanted but he really wasn't interested. He developed his own method of limited communication. If he wants to eat he pounds on the microwave, if he wants something to drink he finds one of his sippy cups and brings it to a caregiver.
He cannot, however, tell you what hurts and that is a big problem.
He doesn't use the toilet, can't dress himself or bathe himself. His food is pureed to keep him from choking since he doesn't chew adequately. Since the food is pureed and somewhat sticky he can feed himself but with the finesse of a toddler, a very messy proposition that caregivers often prefer to avoid by feeding him.
But, and it is a big but, he is not a toddler he is almost 19 and has almost 19 years of experience. He has learned the routines and cooperates when dressing handing diapers, clothes and shoes usually in the proper sequence. He knows that different caregivers handle bathing differently and anticipates the steps of each. He knows that the sound of blender means that food is being prepared and can get very impatient.
He gets bored. He has mastered some limited toddler games and now has little interest in them. The same is true with toys and we are always searching for new things that will engage him. Television once entertained him but he seems to have lost interest in the programs he once enjoyed. He will keep handing the remote to a caregiver as if to say "find something else". He will invent little games like insisting that someone hold his sippy cup, picking it up and handing it back if it is put down. He might entice someone to open a door so that he can close it. These games will keep him occupied until his chosen foil gives up. I don't think he is ever first to end the game.
So what I have learned is that even someone as gravely impaired as our grandson is not a cipher. He struggles as best as he is able to understand his environment and the people around him. He is not static but changes in subtle ways, he is sometimes frustrated, sometimes obstinate but always his own person. And the bookend to this, his grandfather, struggles to retain what he has learned over 83 years and gets frustrated at trying to remember how to do things that once came easily. Often he can retrieve the information, sometimes he can't but he, too, keeps trying. I am learning a lot from the two of them.
