The Importance of Being Earnest

I sat on an IEP Team meeting today for a young man whose cognitive disability is so severe he lives in a residential care center.  An IEP is an Individualized Education Plan; it’s the plan that details what special education and related services are required for students with disabilities.  A ‘residential care center’ is what was once known as an institution.  ‘Cognitive disability’ is what most people think of when they hear the words mentally retarded.  As a speech-language pathologist from the district in which this child resides, I was asked to be on the team to represent communication.  The 16-year-old boy we talked about today cannot do anything for himself; he cannot feed or toilet himself, he cannot hold a book or color, he cannot complete a project which requires the use of both his hands at once.  When I say ‘project,’ I mean he cannot hold an object midline or open a container using both hands together, so severe are his disabilities.  He would starve to death if no one fed him.  He is a 16-year old who functions like an infant.

The infant (she sounded very young anyway) speech pathologist at the residential facility believes she can ‘train him to develop communicative intent.’  Those were her words today.  We operate under two different sets of rules, public school speech pathologists and private sector SLPs.  There may be something to admire about the hope she has under her system of rules, but I cannot abide the cruelty she inflicted upon this child’s mother today under the guise of hope.  Never in my career have I ever, in a meeting with a parent present no less, said to another professional, “you and I have a fundamental philosophical difference of professional opinion.”  Til today.  The baby speech pathologist has been experimenting with a voice-output communication device for this child.  He likes this one musical toy and will hit it to activate it.  Occasionally.  So will a baby.  Occasionally.  Baby speech path seems to think that this boy is going to make a meaningful choice from a field of four pictures (pictures?? not even concrete objects, which by the way he doesn’t even comprehend–would you ask a 4-month old baby to do this?) to express what he wants because he bats at a cause-and-effect toy.  Guess what the mother’s take-away was?  This magical speech generating device is going to make him talk.  “When can he start using that?” his mother asked.  I died inside.

Mrs. G, I ache for you.  My eyes mist as I write this evening.  I am so sorry.  I cannot begin to imagine a world where my child’s greatest accomplishment is walking a distance of about 30 feet once.  Yeah, once.  But I cannot offer this false hope.  I will not.  It is unethical to offer services when there is no reasonable expectation of progress.  This child has not had speech-language services for several years already because his abilities are at a preverbal stage.  Many years and many SLPs before me, this mom’s heart was broken because she had to hear that horrible message, and I’m so very sorry that is the case for your son.  Three weeks ago, I looked our very young neurologist in the eyes and said, “so you’re saying my son has muscular dystrophy,” and he said, “yes.”  Thank you.  I hate it, but I thank you.


One thought on “The Importance of Being Earnest

  1. What a heartbreaking situation for all involved. Why an IEP if his cognitive level is so low? Please don’t tell me he’s subjected to state testing. At any rate, I admire you and think the parents deserve the truth and not false hope, especially when I’m sure the magic device costs a lot of money.

    Liked by 1 person

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