Personal Professional and Ethical Dilemma

Is it appropriate for me, as a person with disabilities, to tell others that if they provide these suggested accommodations, interventions, modifications, social skills training, medical intervention, etc., that a child will magically succeed or be happier, when I know, first hand, there is no truly happy ending for us?

What an amazingly opportune time in my life to be given this particular assignment. 

I have, and am still, struggling mightily with this particular concern, professionally, personally, and as a parent.  My professional roles have varied greatly, as I am or have been:  a school psychologist, medical technologist, microbiologist, veteran of the Air Force, school board member, author, parent advocate, doctoral student, museum board member, and the list continues. 

As a person, I am a mother, wife, sister, daughter, and disabled. 

You may notice, that I did not mention friend. The dilemma: Is it appropriate for me, as a person with disabilities, to tell others that if they provide these suggested accommodations, interventions, modifications, social skills training, medical intervention, etc., that a child will magically succeed or be happier, when I know, first hand, there is no truly happy ending for us?   This is, and will continue to be, my personal dilemma. 

In my professional roles, I advocate for and make appropriate suggestions for accommodations and interventions for people on “my team.”  I refer to “my team,” as “our team,” when speaking to parents, educators, and students.  When speaking with parents and students on “our team,” I further refer to “our team,” as the “cool team.”  We are, after all, a team filled with kind, caring, creative, tenderhearted souls and; therefore, the “cool team,” label seems to fit.

The neurotypicals (NT’s) are those people, them, the other team, or simply NT’s.  Ironically, I have had many adults tell me they prefer not to be the one labeled, and would I please just use the child’s label instead, i.e., learning disabled, ADD, or ‘bad kid,’ (as a school counselor informed me just last week.)  Some, NOT all NT’s simply refuse to believe that I may know what I am talking about.  Some, NOT all NT’s prefer to blame the child for his or her behaviors, rather than listening to the behaviors. 

Still struggling with the original dilemma, therefore, is the good fight to gain interventions, supports, and accommodations for the students, in a world that is not yet ready to understand or accommodate for us?

As a part of my professional role, specifically as the Response to Intervention Facilitator for our district, I have created a support group for parents of students with disabilities, and any person who wishes to join us.  My goal in creating the group, is to establish an open communication network between parents and educators, along with education and support in parenting a child(ren) with disabilities.  I know from personal experience, the majority of advice I have received about my own children has been, “If he would just apply himself.” “If he would try harder.”  “He is so smart, but his grades just don’t reflect it.” 

Hmm… One might wonder; are they actually grading for knowledge, or for disability?

But I digress…

During my Kindergarten through Second grade years, I was placed in a box at school.  I don't mean a figurative "box," I mean a real "stove" box.  A hole was cut out in the front to allow me to see the teacher, but it was meant as a preventative measure for my incessant need to chat with my neighbors.  Being young and happy, I had a lot to say.  I just assumed that everyone else enjoyed my company as much as I did!  As I moved into upper elementary, I became more, anxious, shy and self-conscious. My social ineptness became more glaringly apparent, and my seeming inability to make or keep friends, caused me great sadness. We moved a lot, and I experienced five school systems prior to middle school.  My extreme shyness and discomfort gave way in high school to a "cheerleader smile," which I used to keep anyone from asking what was wrong.  AS girls are excellent at "masking" our difficulties.

I excelled at sports, academics, and leadership activities, but I could never figure out why I felt different.  The meltdowns I experienced in response to random over-stimulation (could be a great basketball game or a fight with a boyfriend) became more and more extreme.  My hyperactivity and impulsivity gave way to anxiety and depression.  During my sophomore year, I began to believe that I was stupid, and started threatening to quit school. Six weeks after graduation, I left for the Air Force.  It was during my service in the military, in night school, that I began to realize that I could be a learner.  I found enjoyment in the pursuit of education.

I became a single parent at a very young age.  Working fulltime during the day as a microbiologist and medical technologist, I completed my undergraduate degree and my graduate degree in School Psychology.   When my son started school, he was a happy, smiling, outgoing little boy.  The day he stepped into his classroom, the light in his eyes dimmed.  His teachers bemoaned his inattentiveness, and seeming inability to focus.

My son was in second grade when he began labeling himself as stupid.  We had many afternoon and evenings of the, as I call them, "Why can't you just(s)?"  Why can't you just focus?  Why can't you just get started?  Why can't you just put something on paper?  It took me years to understand, if he could … he would.  I started reflecting on my own, "Why can't I just(s)?" Why can't I pay attention?   Why can't I just be normal? Why can't I just be happy?  Working as a School Psychologist, I found enjoyment and my professional niche with inner city emotionally disturbed children.  I could work with all of my students and diffuse the most volatile circumstances with understanding, support, and acceptance.

However, having recently moved back to Nebraska, I am finding that my eccentricities are less than tolerable to coworkers, and the focus has become a pattern of familial or female bullying. Rather than being able to blindly do my job to the best of my abilities, I find myself ‘back in high school,’ so to speak, amongst nitpicking and backbiting clutches.  The biggest complaints about me, “too strong,” “too much of an authority,” “too much of a parent advocate.”  Obviously, even as a 'successful' adult, my inability to 'get' the unwritten rules of social niceties, continues to plague my interactions with same age peers.  I do, however, find extreme pleasure in working with children, parents, and senior citizens.

Friday was a breaking point for me, as I struggled with this dilemma.  I was actually told that I am too overwhelming for the team, so they would meet without me, and then the principal would meet individually with me to benefit from my expertise.  I will only be allowed to meet with parents if the teachers agree there is a problem, and if parents request my help, it will be ultimately up to the teacher if they believe that there is a problem.  My neck is itching just writing this! My daughter also, has AS and ADD. Like most girls with the disorder, she is very good at masking.  Masking all day, leads to tantrums and meltdowns at home.  Helping these children, is JUST as important as helping those students who cause trouble for the teacher!  It is, after all, the students we should be focused on, NOT the big people! 

Or is it?

I am an adult, with the disability, who is fully aware of my shortcomings, and a very good ‘masker,’ with the right medication, and training, and yet I am still found to be intolerable by the NT’s.  Am I indeed, making any difference in the lives of children, when I can look into a mirror and into the eyes of my own children and know for sure, there is nothing that can be done to make the world a kinder or more gentle place to exist for ‘our team,’ until the NT’s are able to view us with empathy and understanding, meeting our needs in an appropriate manner without judgment and distain?

More importantly, will that day ever come?

Author: Michelle Fattig-Smith, Ed.S.
Michelle is a school psychologist and medical technologist, who volunteers as a parent advocate, and provides professional development to parents and educators, regarding Individuals with Disabilites Education Act (IDEA), Improving Learning for Children with Disabilities (ILCD), Hidden Disabilites, and Response to Intervention (RTI).  She is a proud veteran of the Air Force and previous school board member.  Michelle has Asperger's Syndrome, Attention Deficit with Hyperactivity Disorder, and learning disabilities.  She is a doctoral candidate in Education Leadership. anniebooks.com

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