Living with a cognitive disability

I can't tell you for sure what it feels like to live with a cognitive disability...but I live alongside that reality daily. I think we often trivialize the frank reality of day to day life for anyone who may have limited cognitive resources to function in day to day living. McKenna is amazing. She can remind you of appointments you may have missed, she will always be the first to notice that you have changed your hairstyle, are wearing new glasses, or have new shoes. McKenna will pray for you if you are, as she would say, "under the weather." And she won't get too busy with "important" things to forget to pray. And yet she struggles...

Imagine for a minute what it is like for McKenna to function on a day to day basis. She is a junior in high school. She can read only a handful of words. She can write her name but if she doesn't practice her last name daily, she forgets it. She knows her phone number but we can never change it..ever...it has taken her 17 years to get it memorized. She has no filter to tune out the information coming into her brain at once. She may seem like a "nosy neighbor" which she is called at school, but she doesn't have the ability to tune out what is going on in a room that may not have anything to do with her. The buzzing of the lights in the room, the smells, the sights, the sounds all are coming at her with full force when she is trying to concentrate.

How would we cope with these challenges? Think about what you do if there is a lot going on and your are trying to remember a phone number for example? Remember, not only are you dealing with distraction, but your peers are not able to sit quietly and stay on task either--that is why they are in this special education room with you. You repeat it the phone number over and over again so that you don't forget it. If you have a pen and paper available you write it down. Now, consider McKenna in this situation. She can't write it down. She can't come up with clever strategies to remember something that is on her mind. The more she tries to focus on what she wants to talk about or remember, the more frustrated she gets with all that is going on around her. And so she does what she knows how to do...she perseverates on that thought. She talks about the same thing over and over. This is the coping strategy she has created in her world of abilities.

And then there is another situation that we underestimate when we are trying to figure out what makes someone with limited cognitive ability tick. In our world, when we are sitting in a class, we have several ways of getting and retaining information. We hear it. We see it through a number of mediums--on a transparency or white board, in our text book, and our own notes. We are able to write down a thought or question to be asked later if we don't understand something. We can apply to our own lives and assimilate it into our reality. We are able to tune the non-vital information that may be coming into our brain erroneously. In a self contained special education room, most of these factors are taken into account and accommodations are made.

But as with most of the information that high schoolers deem important, the information that means the most to McKenna is presented to all of the student body. For example, it is "Snow Week" at the High School this week. Each day has a different theme--there are different things being sold in the lunch room and there are activities that are being announced on the intercom system. These things are very important to McKenna as they are to most high schoolers. There are posters hanging up all over, there are posts on the website and their are knowledgeable friends to be found after school or on facebook to get the information about events going on. McKenna has one source (maybe two) for her information. The announcement on the intercom. So, now McKenna has heard that they are going to sell Chipotle in the lunch room---but she doesn't know when, where, how you get it, how much money it costs, why they are selling Chipotle and if she is able to get it. Wouldn't that cause you some frustration? You here so often that "routine" is SO very important to those with cognitive disabilities. That is true. But I would contend that routine is SO very important to ALL of us--we can just get our questions answered about the routine and the changes in that routine in so many different ways. Our anxiety is relieved because we have ways to answer our questions without ever giving it a second thought.

The behavior that we all exhibit has a function. McKenna's behavior, which can look rather maladaptive is actually for useful for her....she is giving it all she has got. But not utilizing the best techniques as we see it. But she is coping to the best of her ability. What I want from those around her is simple....I want them to walk in her shoes for a day. I want them to consider what it means to be considered so different from everyone else when you are really so much the same. I want others to offer the same level of compassion and grace that McKenna freely extends to them. I want others to see how smart McKenna really is despite her cognitive limitations.