Labels, Diagnoses, and Definitions

There are campaigns to remove the "R Word" from common language.  This word, for those who are not certain is, "retarded."  When I started in my career, it was a commonly used term.  It was medical or diagnostic when referring to a student's learning difficulties.  The grief parents endured once their child was diagnosed as "retarded" was the same as the grief that parents today go through when their child is diagnosed "severely delayed," "cognitively impaired," "developmentally delayed," "highly impacted by autism," or any of the numerous other diagnoses that say to a parent, your child is not "normal."  The word retarded was not a problem when used medically, the problem was, it became a derogatory word to indicate that someone was an idiot, useless, not worthy, beyond stupid, horrible, or any other negative thing.

Please understand, I am not asking that we keep the word in our vocabulary any more than I am advocating for any other derogatory word to refer to people or communities in a way that places one person higher than another.  We all have weaknesses things we see about ourself each time we look in the mirror and hope no one else sees it.  We all also have gifts, and if we let them, this is what people will see.  But that is another post, another time.

The real problem with the word "retarded" is that, even if we use other terms or phrases, people will still hear "retarded."  If I say to a parent that their student is Intellectually Disabled, they aren't hearing a different story.  Telling your friends that your child was diagnosed "severely delayed," doesn't mean they think it is okay or that the grief they feel for you is any less.

As I see it, one of the problems with the word "retarded" is that we simply don't understand it.  We really don't understand any of these phrases, terms, or diagnoses.  I had a professor during my undergraduate degree in Special Education who challenged us to define the, then prominently used diagnosis, Mental Retardation.  It was fascinating how it was used in books, articles, research, the medical community, the education system, the federal laws, and households and yet, no common definition existed.  It was one of the most memorable assignments and activities I have ever participated in, still.  States and local education units are still trying to do this for all the different labels we use to determine eligibility for services and supports.  You see, people can't be placed perfectly in boxes.  They don't fit labels perfectly.  It is not an exact science.  People are dynamic individuals, whether they are 6 months or 6 years or 60.

So why figure it out?  Because the definition a person has for the diagnosis, label, or category of service   drives the grief, celebration, inclusion, and education of that person.  If the teacher and the parents can talk honestly about what that child's "label" means to them now and in the future, they can then, and only then, work as a true team to support, encourage, and educate that child.  I am not perfect, but I try to have this conversation with each parent, teacher, and paraprofessional that works with a child.  I have more work to do in this area, but I am trying.

To that end, here is my attempt at a definition in regards to the identification and education of children with the diagnosis of what is now referred to as Intellectual Disability.

Intellectual Disability is an impairment in functioning in a social, academic, home, communal and vocational environment due to a neuro-deficit that may be caused by a variety of physical problems or traumas.  Intellectual Disability is a changing, or dynamic, condition and therefore, the settings the individual is in should not limit or restrict growth or exposure to ideas.  Any program or training for the individual should be written for their current needs with the belief that they can and will meet or exceed expectations.

Tr*ns!t!@n!!!!

“Transition” is the word that I have often heard said as an explicative as well as through tears. It is a simple word really.

 Transition: noun --the process or a period of changing from one state or condition to another.

However, “transitioning” is not so simple.  A parent of any child worries from the minute they first hold that small miracle until, well, forever.  This is true for all parents.  But when they child’s still being alive is a miracle, when the worries are about tube feedings, immune deficiencies, upcoming surgeries, and seemingly insurmountable communication delays, the worries are magnified. 

How can the next school or teacher possibly know everything they need to know for my child?  Will they learn how to use their communication device?  How to tell the difference between the in pain cry and the tired and sick cry?  Will they know how important it is that they get 10 minutes of sensory input before being asked to sit?  Will the teacher or school communicate with me?  How will they?  Will I know what my child is doing during the day?   How will I know if my child is getting their needs met?   Will the IEP be followed or changed?

This cycle of questioning starts at the beginning of the year of transition and continues until the next year and into the fall.  The teachers such as myself ask very similar questions as we are also attached to the child we have taught, laughed with, calmed, cried with, and loved.  Knowing the professionals at the next site always makes it easier as the questions are answered, and yet, for me at least, I still know that my class will change.  Each child brings their own personality and those personalities combine to create that class. 

As I prepare for the changes, the families, students, and next school or teacher are also preparing.  I watch the families I have spent hours and many emails talking to struggle and wish that I could ease their fears.  What I have learned is, the professionals receiving the child are all good and wonderful people with various levels of experience and various philosophies but they are good people.  They will love the child as I have, but in their own way.  The thing that the parents and I can do is make certain the current setting a welcome place for visiting and collaborating.

I recently had an Eligibility (Triennial) IEP for a student who I have been fortunate enough to work with for the past 6 and ¾ years.  The special education teacher and speech pathologist for the middle school came to the meeting.  Additionally the teacher and I had collaborated on ideas for the goals prior to the meeting.  We were a team and so, the transition was in some ways, already completed.  It was a small step but it gave everyone who has worked with this student this year the chance to ask questions, think trough possible concerns, and, most importantly, begin talking to each other.

Did this stop the parents’ questions?  Of course not! Their child hasn’t stopped growing, changing, trying new things.  There will always be questions, but at least now they have someone to ask for answers.  It is a small thing, but something.

In the end though, I am still going to cry after the last day of school.  Tears of joy.  Tears of hope.  And selfish tears that I will not have this student with me each day.