Presume Competence
Disclaimer: I sincerely hope this doesn't come across as offensive towards anyone with a cognitive disability. That is not at all my intent. I truly believe the most important thing is for a person to be able to feel and give love, everything else is bonus.
Since Wes was only a few months old and the extent of his brain injury became more and more apparent, there has been a lingering question about cognition. No one wants to audibly raise the question and yet we all wonder in silence "how much does he understand?". We constantly look for clues that despite his motor, sensory, communication, medical, hearing, and vision difficulties, his cognition is intact, he understands the world. I try not to be naive in thinking he would be disabled in every area but his cognition but still I have that hope. It is one thing to live your life in a wheelchair (which we are still hopeful won't be the case for Wes) but another entirely to have no or limited ability to think, process, understand, explain, and interact with the world.
That's the tricky thing about brain injuries; we don't understand the brain. The most brilliant neurologists can only give a rough idea of how the brain operates and how a person will brain damage will function. Some adults with strokes recover completely while others with similar MRIs are unrecognizable as the person they once were. Some infants with brain bleeds develop typically, others have impairments in select areas only, and others are globally affected. Some kids with a hemispherectomy (half their brain removed) are still able to walk and talk while others with much less brain tissue that's been damaged are non-verbal and non-ambulatory. We just don't seem to understand how our own brains work particularly when damaged.
So with Wesley, we can see areas where he shows disability. He is behind in all areas of his milestones. We are working tirelessly (well maybe tiredly) to reach those milestones and will continue to do so. Being delayed in his physical and communication milestones, however, makes it incredibly difficult to judge what is going on in his mind. When he can't move his body or his mouth how he wants or see a clear picture of the world around him, how do we judge how much he understands. So we desperately search for the subtle signs that he understands. We look for him making consistent choices, smiling at the right moments, using sign language or vocalizations with significance, following directions, etc. always hoping for a glimmer of... competence. We give him an instruction, lift your head, splash in the water, swallow that bite, and anxiously wait for him to obey. When he does, we rejoice. When he doesn't, we question. Does he not understand, can he not make his body obey, or is he deep down a defiant two year old? More and more Wes has been showing us he understands his world. There are days, where I am convinced he is aware of his world and desires to interact with it in real an meaningful ways. Then he has "off" days where he seems oblivious to his surroundings.
All this leads me to an incredibly important principle we must choose to stand on. We must presume competence. Rather than always looking, begging to for proof he understands, we need to switch our mindset to assuming understanding until proven otherwise. I read this amazing article that so simply convinces me this is the only option (Presume Competence). We do a huge disservice to our precious son if we don't give him the benefit of the doubt, if we don't give him every opportunity he would have otherwise because instead of searching for proof he doesn't have a cognitive impairment, we will assume he gets it and we simply need to find ways to adapt his environment so he can interact with it.
Since Wes was only a few months old and the extent of his brain injury became more and more apparent, there has been a lingering question about cognition. No one wants to audibly raise the question and yet we all wonder in silence "how much does he understand?". We constantly look for clues that despite his motor, sensory, communication, medical, hearing, and vision difficulties, his cognition is intact, he understands the world. I try not to be naive in thinking he would be disabled in every area but his cognition but still I have that hope. It is one thing to live your life in a wheelchair (which we are still hopeful won't be the case for Wes) but another entirely to have no or limited ability to think, process, understand, explain, and interact with the world.
That's the tricky thing about brain injuries; we don't understand the brain. The most brilliant neurologists can only give a rough idea of how the brain operates and how a person will brain damage will function. Some adults with strokes recover completely while others with similar MRIs are unrecognizable as the person they once were. Some infants with brain bleeds develop typically, others have impairments in select areas only, and others are globally affected. Some kids with a hemispherectomy (half their brain removed) are still able to walk and talk while others with much less brain tissue that's been damaged are non-verbal and non-ambulatory. We just don't seem to understand how our own brains work particularly when damaged.
So with Wesley, we can see areas where he shows disability. He is behind in all areas of his milestones. We are working tirelessly (well maybe tiredly) to reach those milestones and will continue to do so. Being delayed in his physical and communication milestones, however, makes it incredibly difficult to judge what is going on in his mind. When he can't move his body or his mouth how he wants or see a clear picture of the world around him, how do we judge how much he understands. So we desperately search for the subtle signs that he understands. We look for him making consistent choices, smiling at the right moments, using sign language or vocalizations with significance, following directions, etc. always hoping for a glimmer of... competence. We give him an instruction, lift your head, splash in the water, swallow that bite, and anxiously wait for him to obey. When he does, we rejoice. When he doesn't, we question. Does he not understand, can he not make his body obey, or is he deep down a defiant two year old? More and more Wes has been showing us he understands his world. There are days, where I am convinced he is aware of his world and desires to interact with it in real an meaningful ways. Then he has "off" days where he seems oblivious to his surroundings.
All this leads me to an incredibly important principle we must choose to stand on. We must presume competence. Rather than always looking, begging to for proof he understands, we need to switch our mindset to assuming understanding until proven otherwise. I read this amazing article that so simply convinces me this is the only option (Presume Competence). We do a huge disservice to our precious son if we don't give him the benefit of the doubt, if we don't give him every opportunity he would have otherwise because instead of searching for proof he doesn't have a cognitive impairment, we will assume he gets it and we simply need to find ways to adapt his environment so he can interact with it.
First Day of Preschool!!
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