When The Proof In The Pudding Still Isn't Enough

"It is a lonely existence to be a child with a disability which no-one can see or understand, you exasperate your teachers, you disappoint your parents, and worst of all you know that you are not just stupid."  ~ Susan Hampshire

It has been 6 years in my current school district since I began to advocate for my son's educational needs.  In all these years, I've come up against a great deal of denial, discounting of parental concerns and outright withholding of appropriate educational tools to help meet my son's very particular and specific educational needs.  The biggest challenge my son has is with Executive Functioning.  You might ask:  what is Executive Functioning?  It's a fair and reasonable question.  Most parents don't think in terms of how well or not their child's executive functioning until it's brought to their attention by either doctors and/or educators.  Prior to extensive testing performed on my son, I knew nothing about it.

According to the National Center of Learning Disabilities, executive functioning is defined as: 
a set of mental processes that helps connect past experience with present action. People use it to perform activities such as planning, organizing, strategizing, paying attention to and remembering details, and managing time and space.

Unfortunately, weakness in the area of Executive Functioning impacts all levels of learning and most importantly, the ability to retain newly learned material.  It is extremely difficult for a child with Executive Functioning challenges as it relates to working memory, to make gains in the learning environment.  It is also extremely frustrating for the child as they realize, they are not making strides when compared to neuro-typical children of the same age.  It impacts their self esteem and can lead to a host of behavior problems and rightly so - they don't understand fully why they are unable to recall the lesson that was just taught 2 minutes ago.  What they do know is embarrassment and not feeling very good about themselves.

I am not a PhD or M.D. but I am a very concerned parent.  I have been raising the warning flag with my district for 6 long years.  I've come up against every obstacle, excuse, delay tactics from my school district trying to get research-based tools and an appropriate education environment for my child. In fact, I have 2 file drawers filled with documentation demonstrating that I've tried in earnest to have my son's educational needs met in school.  What is currently in place, is not working, appropriate and less than adequate.  And, it's not that the school placement is bad per se, my son loves all the animals.  However, he needs appropriate academics in place to help him learn.  If he was in a classroom of his peers that doesn't include children with emotional disturbance that would be more appropriate for him.  If the distirct and school was willing to put research-based tools in place to help with the Executive Functioning issues, it would be a better fit.  However, at present, it is not the case.

My son is in a school with children that have emotional disturbance.  Technically he should be in a class environment with children similar to himself.  My child should be in a class with children who have similar academic, emotional, and physical needs (this is called “functionally grouped).  Since my son does not have emotional disturbance, the behaviors from the children that have E.D., can negatively impact my son and distract him in the classroom environment.  As it turns out, since my son began in September, he has been demonstrating more aggressive and defiant behavior at home.  It is very troubling and causing a tremendous amount of stress in my home.

The issue of the Executive Functioning challenge has been brought to the attention of the school district many times with either data from tests and/or by educators.  Although, the school district has been made aware and is now seeing through valid tests that not only has the deficit in Executive Functioning impacted his learning and retaining new information, the most recent evaluation that was ordered by the district is showing a rapid decline since 2008.  This is alarming for me as parent.  Further, what does this mean for my son?  It means, he'll not be making much progress without an appropriate environment that not only understands the impact of a weak working memory but has the tools to support and help strengthen this very impaired area.  Basically, it is huge because it means the difference of whether my son will succeed or become another statistic pushed out the door at the end of his grade school education.  It also means failing my son although every step has been taken to the point of exhaustion to get the district to provide what is necessary according to the law under IDEA.

IDEA:  The Individuals with Disabilities Education Act (IDEA) is the nation’s federal special education law that ensures public schools serve the educational needs of students with disabilities. IDEA requires that schools provide special education services to eligible students as outlined in a student’s Individualized Education Program (IEP). IDEA also provides very specific requirements to guarantee a Free Appropriate Public Education (FAPE) for students with disabilities in the least restrictive environment (LRE). FAPE and LRE are the protected rights of every eligible child, in all fifty states and U.S. Territories. 

There is an awareness that is being blatantly and deliberately ignored by the school district and all those professionals in charge of providing my son with an appropriate education.

Following are snippets taken from evaluation reports regarding my son's Executive Functioning issues:
 

April 2014 - According to Lenore Rivera, Ph.D who was hired by the district to conduct an intensive psychoeducational evaluation.  The evaluation was to determine appropriate services based upon need:  Aren's executive function deficits as it relates to working memory have gone down significantly since 2008.

*April 2011 - Psychoeducational Evaluation performed by in district school psychologist:  Continued weakness in organizing language, inability to recall and follow multi-step direction of increased length and complexity.

April 2011 - According to The Albert Einstein College of Medicine, Julianna Bates, MD:  Aren should receive a full neuropsychological or psycho educational evaluation in order
to assess his current level of cognitive functioning, and to document his profile of
strengths and weaknesses so that more effective intervention services can be
implemented. Particular areas of concern for further evaluation include receptive and
expressive language, working memory, and attention.

August 2010 - According to Melissa Nishawala, MD, NYU Child Study Center, NYC:  "Aren has many of the motor difficulties and the executive function difficulties, which are common with Autistic Disorder. He has significant difficulties with distractibility, organization, sequencing, and following through."

August 2010 - According to Elizabeth Roberts, PsyD, NYU Child Study Center, NYU:  Executive Function - working memory extremely limited, deemed impaired. 

Although my son had an annual review in April 2014, the CSE Chair refused to discuss the recommendations in the evaluation which the district ordered.  We only agreed upon placement and nothing more.  His IEP has not been updated to reflect new goals and attending to the significant deficits in working memory.

Yesterday, we had a meeting to discuss the recommendations in Dr. Rivera's report.  The meeting only took place because I asked for it!  When the district planned to act on the report and recommendations is anyone's guess.  I knew it couldn't wait any longer and I had to see what the district will do for my son in his current placement.  It was discussed by the IEP coordinator from my son's out of district state funded school that perhaps the placement isn't appropriate for him because they don't have any of the tools needed him and seem to have no interest in implementing the suggested tools although my son is suffering from significant delays.  Basically, I was given the company line:  "We don't do that here".

My son is 12 years old and operating at a 3rd grade level in reading writing and math.  The current state funded private school placement is not using research-based tools for much needed remedial work.  They are using Common Core which is not appropriate for a student with so many deficits and shortcomings.  In addition, my son needs a memory training tool to help strengthen his working memory challenges.  The IEP coordinator suggested I find something "free online" to work his memory challenges.  Basically, passing the buck on to the parents!

Why is no one at the district or his placement alarmed by my son's deficits!?  Our children are the stakeholders.  Further, there are 9 recommendations in the psychoeducational evaluation.  The IEP Coordinator basically said, "good luck finding a school that will provide all 9 accommodations and if we find it to let her know because she will seek employment there!"  Most everyone in the meeting got a chuckle from her sarcastic statement.  My husband and I failed to see the humor.  This is very serious.  It is so serious that had the district stepped up to the plate 6 years ago, maybe yesterday's meeting would never been necessary.

Yesterday's meeting was adjourned and expected to reconvene in 5-6 weeks!  Again, more delays while my son continues to struggle.   If I'm forced to go to due process, it will be a financial hardship.  The district once again has failed to provide a FAPE for my son by not aligning him with the appropriate setting, accommodations and necessary tools to help him be successful.

I believe I have been more than patient waiting for this school district to step up to do the right thing. Unfortunately, all this waiting is at my son expense.  He can wait no longer for the adults in charge to do what is right for him - provide the necessary research-based tools and supports.   I am prepared to do whatever is necessary in order for my son's educational needs to be met as according to the law.  In this regard, the school district has failed at Child Find in the face of extensive documentation by those who are experts in the field of Autism Spectrum Disorders.

~ This is my story and I will continue to tell it for whatever it is worth. ~

"By failing to prepare, you are preparing to fail."   ~ Benjamin Franklin