The Situation is a Microcosm of the Ills in Our Society

“When a school district fails a child of color with a disability, it is double jeopardy.  It’s a microcosm of everything wrong in our society.”   ~ B Giordano

Back in November 2010, I wrote a post about recruiting the help of an advocate to assist us in getting appropriate accommodations for my son.  I trusted this person to be an advocate for my child.  The district was discounting the NYU Child Study evaluation.  The advocate convinced me and my husband, our concerns were well founded and backed up by leaders in the field of Autism Spectrum Disorders.  Unfortunately, the school district had an agenda.  The agenda was to provide as little as possible for my child although severe deficits were revealed in the very lengthy report complete with graphs and data analysis.  No matter.  The district succeeded in fulfilling their unsavory agenda with a dog and pony show for the advocate convincing her, my son was well placed in the current program.    The end result, my son was denied extended school year due to the special education teacher refusing to advocate for it.  In our view, it was retaliation for expressing the concern the teacher's judgement was clouded by racism.

Our suspicions were not far off the mark.  As it turns out, a classmate of my son who didn't have an official diagnosis (shared by the classmate's parents) only suspicions of ADHD was not only provided with extended school year but a referral to BOCES.  When I asked the parent how difficult it was to gain that accommodation for her son, her response was and I paraphrase, "no issue at all".  In fact, the special education teacher advocated for it!  As it turns out, the student was white.

It didn't matter that back in 2010, school psychologist noted on the IEP, issues about my son's working memory challenges.  In fact, in her words on the IEP, she deemed my son to be borderline "mentally retarded".  If the special education teacher considered my son to have learning challenges, why would she advocate against an extended school year?  "Due to his distractibility, visual prompts or cuing are helpful as they help to gain his attention and engage him in his learning. Processing difficulties, poor attending and high distractibility can impact Aren's overall performance and new learning. These should be taken into consideration when assessing Aren to be sure an accurate reflection of his knowledge is being gained." ~ T. Nethercott, Special Education Teacher

A child with impaired intellect needs all the support he/she can receive.  It was downright retaliation for calling her out on racism.  Truth hurts so bad that it makes people want to get even, even if it means, negatively impacting a child!

Further, this special education teacher is now a CSE Chair in the district.  Back in 2010 at a CSE meeting, this 2014 newly appointed chair verbally expressed that she "is not concerned about state tests. This person is now in the decision making position regarding very important outcomes about special education student accommodations.  It is apparent, emotions could cloud her views and decision making.

It's a concern because what assurances will parents have that this person will not "cherry pick" which student gets appropriate services, supports and which will be left to flounder as my child was made to do.  There is a preponderance this educator/administrator gave preferential treatment to a white student without an official diagnosis over my brown skinned child with documents fully identfying his disability and needs as it relates to his education.  It is a microcosm of what is wrong in our society and feeds right into the statistics of the disparity of how children of color are treated differently.  White privilege prevails, alive and well even among educators!

"Young Black men — across the board — score below their counterparts in other racial and ethnic groups when it comes to graduation rates, literacy rates and college preparedness. And many African American men, in turn, are virtually locked out of employment and are filling up the nation’s prisons in disproportionate numbers."  Fact Sheet:  Outcomes for Young, Black Men ~ T. Thompson

Is this the fate for my child?  Will my child end up yet another statistic?  What does it say about this school district that deliberately withholds the educational tools my son needs as of yesterday and 6 years ago!  Here we are, white parents advocating for our African American child so that he doesn't end up on the wrong side of the tracks and every obstacle has been thrown in our path!  We have situations in this country like Travon Martin and Ferguson in part, because as much as many want to believe, children of color are just not given the same opportunites and access compared to white children.   Statistically, this is accurate still in 2014 and it's alarming.

As parents, we are working to create an appropriate path for our son so that he can hopefully, live a full, meaningful life, making contributions in our society.  The school district instead, focuses on how to minimize much needed accommodations!  If he ends up a statistic and falls into harms way, white society will point a finger of blame at him!  Society will not acknowledge it is the fault of the system.  And, who is the system?  The system is US - you, me, everyone.  It takes people to make a system.

 

Tavis Smily - Too Important to Fail

Racist tendencies apparently is an issue in this district.  Back in February 2012, it came to my attention that there was no display in the school library on Black History Month.  I wrote to the elementary school principal/CSE Chair about the apparent lack of education and available reading material for students on Black History Month.  This is the appalling response I received:  "At the primary level we incorporate stories and activities within the classroom. In project Adventure this month they learned about "Bojangles"  and how to tap dance.  We also do a great deal around MLK and Abraham Lincoln."  ~ K. McEnroe

Apparently, she was not well versed that African Americans do not take extra pride in "tap dancing".  What happened to teaching young, white minds about people such as Rosa Parks and Fredrick Douglas?  I live in a very homogenous community.  It's important to teach children about the positive contributions African Americans have made in our country to help broaden an otherwise narrow point of view.  I viewed it as a direct "dig" to me because this principal/CSE Chair was not an ally for my son either!

Only recently, the district cut the hours of the only African American educator we have in the district.  An educator that teaches music/voice lessons to students and has helped them earned coveted awards.  An eduator who has been instrumental in bringing diversity and culture through song and music into this homogenous community; had his hours cut!  The last thing we need in this community is not less awareness to different cultures; we need more.  It's a microcosm of what's wrong.

Earlier this year, the district ordered a triennial psychoeducational evaluation on my son.  I was notified by the CSE Chair the district will pay for it but provided me with only one professional to choose from.  We were not comfortable with a single choice.  In fact, the district should have provided us with a list of professionals to select from.  Given that the district has created this atmosphere of distrust, I pushed back.  I sought an equally qualified professional who has worked with other districts in the Hudson Valley area.  We had not met previously.  She didn't know my son so it was reasonable to expect an unbiased, objective evaluation with a focus on the student.  The CSE Chair bristled when we advocated for them to hire her.  At first, the district flatly refused.  I pushed back telling them they need to explain in writing why they refuse to hire her when she possessed all of the required credentials to perform the evaluation.  Eventually, after much push/pull, the district agreed.  Dr. Rivera of Learning Insights, performed a very extensive evaluation on my son.  It took several days to complete and another trip down to The Bronx to The Albert Einstein College of Medicine, Cognitive Neurophysiology Laboratory.

Fast forward, the psychoeducational evaluation was completed this past April.  The annual review was held and when it came time to discuss the evaluation the district paid for, the CSE Chair pushed it off!  And, by the way, we now have 3 people designated to chair the CSE.  One of the Chairs, is the school psychologist.  The same school psychologist with only an M.A. degree who considered my son to be "mentally retarded" without testing him first!

Last week, after I took the initiative to call a meeting with the CSE/IEP team to discuss the recommendations in the evaluation.  The new CSE Chair delayed on the recommendations.  Instead, she requested the school where my son attends, to do assessments regarding his level of functioning!  What was the psychoeducational evaluation for if not to determine his current level of functioning?  Once again, the district has created another block and pushed off further discussion of the evaluation's recommendations for 5 weeks!  It seems the district is working overtime to figure out again how to short change my son because apparently they don't like the facts and supporting data.  It seems they keep working toward an answer they want instead of embracing the facts from experts in the field of Autism research.

Listen as the team gets a big chuckle from the list of recommendations needed for my son.  In fact, the CSE Chair agrees wholeheartedly it's too much to expect a nine point list of accommodations for the student stakeholder that is only 4 grade levels behind on reading, writing and math!  My husband and I failed to see the humor.


The agenda is to give as few accommodations as they can get away with.  By many accounts from other parents I speak with, it's a disgusting, prevailing thread of districts working to give as little as possible to our kids in need.  Further, it's disturbing that race is factored in regarding students that receive versus those that don't.  Yes, I'm making a case for it.  Yes, I have many, many documents to back up everything I state on this blog.

If my son doesn't get what he needs immediately in the way of tools to help with his working memory deficits, research-based reading, writing and math programs, he is, in fact, at high risk of failing!

 “Our deepest concern shouldn't be just the kids who can't go to school, but those who are going and not getting proper education”  ~ Samer Chidiac

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

 

Hurry Up and Wait or Applying for the Medicaid Waiver

"Bureaucracy expands to meet the needs of the expanding bureaucracy.” ~ Oscar Wilde.

Last week, I received the long awaited letter from the DDSO about my son's medicaid waiver application.  Basically, the letter stated my son is now eligible to "begin" applying for OPWDD services.  To me, it was one of the same - he qualified for the medicaid waiver.  I fire off an email to the intake worker telling her how excited I am for my son and how do I go about getting services for my child?  Quick response:  Ahhhhh, wait a minute.  Do you hear the sound of a screeching halt?

One email leads to another to learn I need the assistance of a Medicaid Services Coordinator (MSC) to begin the process to determine eligibility of services such as respite and recreational programs.   However, first I need to have medicaid for my son.  Well, I have medicaid for him and have had it for him for the past several years.  In fact, when I submitted my entire packet for the waiver which is equivalent to a dossier, I voluntarily provided proof of the medicaid.  Why didn't the letter from DDSO indicate the need for an MSC as the next step in the process?  And, further, why didn't it automatically include a listing of MSC's to select from?  That would've been so much easier and far less confusing.

Although there are layers upon layers to navigating this system, things are made far more complicated than it should be.  In fact, when I received medicaid for my son, why was I not given information of the waiver system to make an application for my son?  Why are these agencies not working in concert with each other?  All of the agencies are state funded yet there is a gross lack of orchestration that in theory could make things easier and more manageable if each were communicating with the other. 

“The single biggest problem in communication is the illusion that it has taken place.” 

~ George Bernard Shaw

Finally, I connected with a potential MSC.  She was very helpful and persistent.  In fact, although I have the letter stating my son is now "eligible" to apply for the OPWDD services, she insisted I didn't have all my ducks in a row yet.  She did initiate contact with the intake worker at the DDSO to discover that yes, I am eligible to recruit the services of an MSC!  Oh my goodness!  For a couple of hours, I was on an emotional roller coaster ride.  One would think by now, I would be used to it -   that it's just par for the course because nothing about these systems were made to be easy.  I told my potential MSC, that it should be straight forward like following a recipe.  First you do A, followed by B and then C and so on and so forth.  "Oh, no... this is government and governments don't flow in a systematic manner."  Of course, I have to admit I might have confused some caseworkers because I had the medicaid piece in place.  Sort of like putting the old cart before the horse type of thing.  If things were only explained to me, I would've followed protocol but in truth, my son was always eligible for the medicaid because of his disability.  I pursued what I considered what he needed without having knowledge of all the other related pieces and systems - whew!  It has been a long, up hill road to climb but I'm getting there step by step.

So now I wait to begin this new process and hope my son will receive the services he needs as we work toward self determination for him.  He is only 12 but the process began yesterday - that day long ago when we learned beyond a doubt he has a developmental disability.  The goal is for him to be the captain of his own ship as he will need to ultimately learn to navigate these waters that often do not run smoothly and can be down right confusing.

"We are taught to be ashamed of confusion, anger, fear and sadness, and to me they are of equal value as happiness, excitement and inspiration."  ~ Alanis Morissette

Special Education Regional Associate

“We often get caught up in our own reactions and forget the vulnerability of the person in front of us.”   ~  Sharon Salzberg


When we are trying to work through challenges with our school district's special education department to get our our child's needs appropriately met, there are resources at the state level designed to intercede on our behalf.

Often times, school districts will tell parents right off the bat, if they're in disagreement, there is always "due process".  Due process is extremely arduous and stressful for many parents.  The cost to hire an attorney is out of reach for many parents and if we don't prevail, we're at risk of incurring not only our own personal attorney fees but the school districts as well.   Going to due process should be the absolute last resort whenever possible and should never be wielded as a weapon of intimidation.

Parents have legal rights and state level liaisons are just a phone call away.  Special Education Associates are paid with our tax dollars and in place to assist when necessary.  They have expertise, well versed in the special education regulations and are required to work with the special education chair person in our districts when the going gets rough.  I think one of the most important roles of the liaison is putting the district on notice when they are not adhering to the law.

Do you know who your New York State Regional Associate is?  If not, it's a good idea to get acquainted and have that person's contact information in the event you need assistance when coming up against a brick wall.    Go to this link to locate your associate by region:  New York State Special Education Regional Associate

“Alone we can do so little; together we can do so much”  ~ Helen Keller

IEP Meeting Conversation Stoppers | Individualized Education Program - NCLD

"Some of the statements made to parents at IEP meetings are “conversation stoppers”—comments that create barriers and can prevent the IEP team from working cooperatively to develop effective special education services and supports for students with disabilities."

"Here are nine common “conversation stoppers,” some information about what may be the real issues of concern and suggestions for how parents can respond in a forceful but respectful way so that planning for their child can move forward."

See the article in the link: 

IEP Meeting Conversation Stoppers | Individualized Education Program - NCLD

Tango Anyone?

The most common way people give up their power is by thinking they don't have any.
~ Alice Walker

October was a trying month in my ongoing advocacy work for my son.  In preparation for his transition to middle school, I've taken a proactive position by petitioning my school district early requesting referrals to potentially suitable placements.  It's important to remember that with more and more children being diagnosed with an Autism Spectrum Disorder, appropriate placements can be a scare commodity especially if we wait until the last minute.  It's important to start early and for purposes and intent, school districts have to be aware children could end up on wait lists if they don't respond in a reasonable time frame.  A reasonable time frame in my opinion translates into starting the process the year before a child is scheduled to transition.  The intent is to secure a placement is a pressing matter when a child is aging out of the current program. 

After a flurry of emails going back/forth between me, the CSE Chair, Superientendant of schools and a  letter fired off to the NYS Department of Education in Albany, NY, the school district conceded in granting me "informal" visits to schools of interest.  Basically, the district made arrangements for a look and see.

The Chair became miffed with me after scheduling two school visits on the opposite end of the county (I live in a large county) and I replied with "thanks, but can't do two school visits in one day".  She was not pleased to say the least and said, I was being inflexible.  Inflexible!?  No, I provided 11 days in the month of November to see 3 placements.  According to the Chair, I was expected to contort myself to meet the needs of the county BOCES program supervisor who was scheduled to meet me to tour the two placement on the same day.  In fact, the CSE Chair was presumptuous telling me she was doing me a favor by "allowing" me to visit potential placements without a "formal" referral from the district.  That notion of favor didn't sit well with me.  I'm being proactive while the district had not initiated any plan moving forward for my son.  In effect, the district wasn't doing due diligence for a student who will technically be aging out of his current program at the end of the school year.  "Favor" was not a good word to use with me and certainly discounts their responsibility to ensure my son continues to receive a FAPE.  Further, school districts must work with parents in setting up meetings that are mutually agreeable - not one sided or more convenient for one party.

While all of the school visit scheduling was being worked out, the CSE Chair informed me she was rejecting my proposed doctor for the independent psychoeducational re-evaluation.  Just to recap, the district offered to do an independent evaluation at their expense provided I accept their doctor of choice!  Ah, noooo - I pushed back demanding an explanation for their rejection and stated firmly I was not given a real choice.  One doctor is not a choice.  It is a proposition that had all the appearances of being self serving.  A list of at least 3 doctors would've provided a choice but certainly not obligated to accept any.  Parents can request a list of providers but is under no obligation to go with any doctor from the list the district provides.  Needless to say, I was not amused.  My husband and I were starting to feel extremely uncomfortable with what appeared to be the districts rigidity and determination to push some agenda.

To make a long story short, the district stated they are within their right to do the triennial evaluations.  And, of course they are!  Children in special education with an IEP are typically re-evaluated every 3 years.  I indicated I expected to receive the name, date and times of the evaluation prior to it being performed.  It is the school districts responsibility to make it known of upcoming assessments to parents prior to testing dates and get sign off on it.  In all likelihood, it would fall on the school psychologist.  It is important to note that parents have the right under law to challenge results from any evaluation by seeking an independent evaluation.  This district in my assessment was attempting to make this whole process challenging and confusing.  What happens when parent agree to the evaluation at district expense which they are required by law to do in the first place and parents don't agree with the findings?  In this situation, the district was offering from the start to pay for an outside, independent evaluation.  The district has never done this before and it's almost unheard of.  Why all of a sudden!?  I don't feel special, I'm feeling guarded.  It can get sticky if it ends up going by way of due process.  Hence, the reason why it's extremely important to file everything, all correspondences, tests, evaluations, letters to the state, etc., that applies to your advocacy efforts.  I've gone back to my files many times and it has made the difference in having my child's needs met.

Upon my request and determination, the school district has agreed to send a "formal" referral to a placement I consider will meet my son's indiviudal needs.  With that being said, here is what is typically in a referral packed:

• CSE Chair Referral Letter

• Report Card or Progress Report

• Disciplinary File, if applicable

• Attendance Report

• Standardized test scores

• IEP

• Psychological Evaluation

• Health/Immunization Records

Since pushing for an answer on the district's rejection of my psychologist, the CSE Chair has decided to do reference checks for possible consideration of my suggested doctor. 

Please see the article below for an overview on the psychoeducational evaluation process:

Psychoeduational Assessment: How to Read, Understand, and Use Psychoeducational Reports by Dr. Sherry Mee... by Barbara Giordano

 
It is unfortunate that parents must be guarded but it's foolish not to be a little leery of those who come bearing "gifts" who have not exactly been "giving" in the recent past.  Of course, if you call them out on any hidden agenda, it will be denied.

Right now, I'm waiting to hear back from the district.  In the meantime, I will be exploring potential program placements for my son. 


"The basic difference between being assertive and being aggressive is how our words and behavior affect the rights and well being of others." ~ Sharon Anthony Bower

Here We Go Again

"I'll start letting my guard down when people stop giving me reasons to keep it up."  ~ unknown

My son will be transitioning out of his current placement next year.  He's getting to be a big boy, soon to be moving on to middle school.  It's a big step for a child and especially so for a child with particular educational needs.  It's up to parent to work in concert with school districts to find the most appropriate placement that addresses those particular needs.  Having a child that learns on the Autism Spectrum adds layers that typical children are not faced with no less the stress parents go through with each and every passing year in their child's academic life.

In anticipation for the move up and over, I put in a request to the school district for referrals to several BOCES in three nearby counties.  Each placement holds something different so in the mind of a parent wanting to be as prepared as possible, it's important to weigh these placements carefully.  In order for that to happen, it's generally a good idea to make site visits, talk with the teachers and administrators, observe the setting and ask a laundry list of relevant questions.  I'm not the type to shy away from asking the tough questions and I loathe leaving anything to chance or last minute.  You see, I've learned the hard way, these special placements come at a premium.  The seats are in demand resulting from more and more children being diagnosed with an ASD and not enough seats to go around.  It's sort of like the old game, musical chairs.  The swiftest get the seats while one child is always left out.  I don't want my son to be left out because Mom and Dad dragged their heels.  No.  It will not be our fault if our son misses the proverbial boat.  Not if we can help it, of course.

Two weeks ago, I contacted the school district requesting referrals to schools of interest.  Of course, prior to making the request, I gleaned the websites of the schools of interest.  It wasn't just on a whim.  No sir - that is just not my style.  I do the required research.  I must do the research because my son will be aging out of his current placement.   Preparations must be made and it needs to be made sooner opposed to later for all the reasons mentioned previously.  These seats are like winning the lottery for our kids - sad but unfortunately true.  We come up against wait lists and we know our kids just can't wait.  Time is ticking away and the closer we get to the end of the line, the louder the ticking.  It's almost a sonic boom blasting in our ears; the sense of urgency to just get it done so we can sit back with a sigh of relief that our kid will be OK for a while.

I did digress...so two weeks ago, I contacted the district via email.  Made an assertive but polite request for the referrals.  My email was addressed to both the CSE Chair and the assistant.  It was/is important that we make requests directly to the CSE Chair for it is the Chair that makes all final decisions on our children's behalf.  I received a swift reply from the assistant much to my rather very pleasant surprise.  I thought, "wow", I don't have to hold my breath... I can breathe.  I don't have to wring my hands or sweat bullets waiting for a push back which has been my experience in the past with the district.  As those who have read this blog can note, it has been an uphill climb getting my son's educational needs appropriately addressed.

Hold on!  Not so fast!  The other day, I received a letter from the CSE chair that I will not be getting referrals until the spring 2014.  With further explanation, the letter goes on to explain that my son is due for his three year re-evaluations that includes the psych-educational evaluation.  As much as the chair appreciates my enthusiasm to get this ball in motion, the referrals will have to wait until next year.  Further, the chair has suggested the willingness of the district to provide an independent psychologist to do the evaluation.  On a side note and reminder, the in school psychologist who holds only an MA was suggesting my son had intellectual disability back in 2010 without doing any testing.  The school psychologist is not a clinician and is not a PhD.  She has no authority to make diagnosis!

I followed up with two separate emails to the CSE Chair asking if the suggested psychologist has assisted in the district previously and if I can get referrals from parents.   It seems like a reasonable request to me since I don't know anything about this person.  In a separate email, I asked the Chair why must we wait until spring to explore possible placements?

My son is significantly behind in math, reading and writing.  The last psych-educational evaluation was done in 2011 so it's up to date.  Further, my son is not going to miraculously catch up or his disability disappear.  This is the same type of situation I went through back in 2010 with a different Chair who consequently was mysteriously released from the district payroll.  The former Chair also refused to give me referrals in a timely fashion.

Right now, I'm waiting to hear back from the Chair.  I'm patient to a point.  My son has no time to waste.  I have no interest in playing games with the district.  When school districts throw barriers in parents path, they are hurting our children.  Our children are ultimately the losers in this game where our kids have everything to lose without our determined advocacy on their behalf.


"When obstacles arise, you change your direction to reach your goal, you do not change your decision to get there."  Zig Ziglar

10 Promises Every Special Educator Should Make To Their Students’ Parent

"If you let someone else set your standard, whether it's physical appearance, academic achievement or economic success, then you will never be content with who you are. Your purpose should be to set your own standard, not to catch up or to beat out somebody else."  ~ Elaine R. Jones, former president of the NAACP Legal Defense and Edu-cation Fund and the first African-American woman to enroll in the UVA School of Law.

10 Promises Every Special Educator Should Make To Their Students’ Parent
April 23, 2012 By Tim Villegas

1. I promise to stop calling parents who have high expectations and advocate for their children “high maintenance” and I will equally try to discourage the term “high profile” if due process is involved.

 2. I promise to presume competence (always assume that your child can learn and is interested in learning) even if they are unable to communicate to me what they know (yet!)

3. I promise to never use the “R” word and to speak up against it when I hear it used in private or public.

 4. I promise to ask your input on the educational goals for your child BEFORE the IEP meeting and realize that without your collaboration we have no team.

 5. I promise to remember that YOU were your child’s first teacher and YOU are an expert on your child…not me.

 6. I promise to stop using “what is he/she going to get out of this?” or “they’re not ready” as an excuse for not including your child in general education.

 7. I promise to never assume I know what goes on at your home or blame your child’s challenging behavior at school because of your parenting skills.

 8. I promise to Always Be Communicating (ABC) with you about your child (especially the positive things).

9. I promise to keep an open mind and realize that what works with one child does not necessarily work with every child.

10. I promise to always have high expectations for your child and never give up on them…or you.

My Son's Testimony

"Pretty much all the honest truth telling in the world is done by children." ~ Oliver Wendell

 Last year after receiving the test scores from my son's NYS ELA and Math assessments, I was taken aback by the result. Many parents want their children to do well in school. We don't want to see our children struggle and certainly not perform below par or fail. However, when test scores don't appear to reflect the current level of performance, it sends up flags in a parent's mind.

 My son scored much higher in the math exam compared to how he was responding to his homework assignments. It was so uneven it was glaring.  I looked at the results and knowing my son, how he gets frustrated and melts down when the going gets tough, I thought, something isn't right.

I'm teaching my son to learn to advocate for himself.  He's only 10 but it's not too early to begin.  Aren was very agreeable to do these video's.  This is a bit of a story but I want to first share my son's testimony with you. The video's are telling but I will share more on the events later on that have led up to the videos.  Providing testimony is very important and especially so when dealing with corrupt systems.  The worst offenders are those that cheat children. Below is my son's testimony on his participation in the NYS exams:

One of the reasons I decided to do the videos is that I reported my suspicions of test tampering to the NYS Education Department in Albany, NY.  I wrote to Chancellor Tisch about my concern in January of this year.  I was compelled for a number of reasons.

It was September and I was attending a meeting with the teachers at the new school my son was being enrolled in.  At this point, I had no immediate concern.  It was in the course of conversation, I casually asked when parents generally receive state exam test scores.  The teachers seemed puzzled and stated I should've received the scores in August.  I contacted the principal in my school district inquiring about the scores but didn't get a response.  A couple of days later I sent another email to the principal this time copying the superintendent on it.  Finally, I get a response from the superintendent that the scores would be forthcoming.    It was disconcerting that I had to actually go after the scores when previously with my daughter it had never been an issue.  It was suspect that it was an issue with my son given the history of challenges in this district getting a FAPE for him.

Aren 3rd Grade NYS Exam Scores Aren Classwk Homewk Samples Feb_April 2011
After receiving the scores, I asked my son if anyone helped or assisted him during the exams.   His first response was defensive "it was hard".   He seemed upset and frustrated.  I asked him again if anyone helped him and he said the special education teacher and assistant helped him with the answers.  I felt upset in fact, down right angry about what my son was sharing with me.   All I thought about was how they were only interested in themselves and not my son.  You see, I was going through a very difficult time with the district.    Not only was I being put through the wringer but so was my son.  During the spring my son had bed wetting accidents.  He was showing regressive behavior.  He was coming home from school upset.  I got every impression they were hammering him to perform.  They were doing all they could to deny my son a FAPE.

We initiated due process that was settled during that time frame. Things started to fall into place after the settlement and my writing to Dr. John B King, Commissioner of Education in Albany, NY.   I had to explain to Dr. King all the grief I was enduring trying to get my son's needs met.  Regardless of substantiated diagnosis, the district was refusing to appropriately accept it and the recommendations to help meet his educational needs.  It was only after I went through due process and contacting Dr. King that I was finally able to have my son moved to an appropriate placement for him. In the interim of all of that going on, the district continued rebuffing my advocacy and were trying to prove my son didn't have particular needs as it related to his diagnosis by directly assisting him with the state exams!

When you look over my son's homework and compare it to his test performance, it doesn't add up.  My son doesn't miraculously improve during the test period.  It's not possible with his low threshold for frustration and high distract ability.  How could I not think that the district deliberately held back the scores.  It was too late to use the scoring as an argument my son didn't need accommodations.  Too much had taken place between winning the due process and contacting NYS Education Department.  They probably thought I would forget about it.  The district continues to under estimate my tenacity.  They keep mistakenly think that I'm not in it for the long haul.  They probably think that once I'm appeased, like a good sigh of relief, I'll back off feeling satisfied.  I'm in it until my son graduates from high school.  I do not hide from this fact.  I make it very plain with my ongoing advocacy efforts for both of my children.

Fast forward to present day.  When I contacted Chancellor Tisch, I received a reply where she seemed very concerned about my suspicions.  Chancellor Tisch, immediately followed up by forwarding my concern to the Dutchess County BOCES superintendent, Dr. Pennoyer.  Dr. Pennoyer was instructed by the Chancellor to investigate the allegations of test tampering and instructed to present the findings by May 1st.  I waited for follow through on the investigation and by May the first, I didn't receive any word on it.  I sent a letter to Mr. Pennoyer asking about the status of the investigation in which case, I received a curt reply that the investigation had been concluded and sent to Steven Katz in Albany.  That I needed to therefore contact Mr. Katz for the findings!  I waited for a couple of weeks thinking any day I would receive something from Mr. Katz.  I did not.  I decided to write to Governor Cuomo about my concerns.  I get a response from the Governor's office advising me if I wish, to contact Katie Compos, Assistant Secretary of Education, Office of the Governor.  Of course, I contacted Ms. Compos who then told me she doesn't handle complaints and that a special investigation unit has been established for complaints such as my own.  Ms. Compos suggested, if I wish, to contact Tina Sciocchetti who handles these sort of concerns.  I then contact Ms. Sciocchetti who advises me that Steven Katz has received my complaint and therefore will be getting back to me.  I wait and I wait.  I write back to Ms. Campos that my concern has landed on the desk of 6 different people and so far, I've not received any information about the "investigation".  And, by the way, did I mention that in the course of these six months and 6 people later, not one person contacted me to ask for additonal information or speak directly with my son.  My son, as you can clearly see is not mute.  He can communicate and communicate quite well.

Finally, just the other day, I receive a letter from the office of Steven Katz of the NYS Education Department informing me the investigation did not find evidence substantiating the allegations of misconduct in the administration of testing!  The investigation...  I can't help to wonder exactly what was involved in the investigation.  What comes to mind is a scenario where the investigator, asking teachers in question "did you assist the student in question during the administration of the NYS exams?"  Response:  "No!"  Investigation concludes there is no proof to support the complaint - case closed!

Truly, this is exactly how the events unfolded.  I have every piece of documentation as is my habit.  Soon, I'm going to need a file cabinet just to house all of the documents I keep on record for my son's advocacy. 

I want to conclude this post by stating, I have every belief that my complaint was swept under the rug.  I have no confidence that a real and actual investigation took place.  We have problems at every level in our education system with no real checks and balances.  There are no independent agencies so those doing the "investigating" is the same department investigating itself!  It is unacceptable.  However, my Partners in Policymaking (PIP) training has given me the necessary tools to keep putting pressure on our legislatures and administrators until we can exact positive changes in our systems.  This is what I will keep doing. 

"Law and order exist for the purpose of establishing justice and when they fail in this purpose they become the dangerously structured dams that block the flow of social progress."   ~ Martin Luther King, Jr.

Partnering With Policymakers

"The most difficult thing is the decision to act, the rest is merely tenacity. The fears are paper tigers. You can do anything you decide to do. You can act to change and control your life; and the procedure, the process is its own reward."  Amelia Earhart

Last year, I completed a course for Partners in Policymaking( PIP).  It's a leadership program to help advocates of people with special needs to learn to effectively work with our officials in government.  Our goal as PIP graduates is to work with legislatures to impact positive changes in laws that directly impact persons with disabilities.  I always remind myself that our officials are public servants.  Their job is to stand up for their constitutes plain and simple.  I live in New York State.   Two public officials who immediately come to mind that send the message they care about special education are state senator, Greg Ball and Governor Andrew Cuomo. 


A few weeks ago, I attended a round table hosted by Senator Greg Ball.  The topic was transition plans for adults with disabilities.  This area presents particular challenges as we prepare our children to launch from high school into the adult world of further education, jobs and in some cases independent housing.  My son is not quite there yet.  He is only 10 years old.  I do think ahead however and understand planning begins sooner rather than later.  I think it's very important that we try to set the path as early as middle school.  It's important to have long range plans in place.  How can I set my child on the right path if his current needs are haphazardly handled or without forethought?  It's a real concern I have for both of my children for very different reasons.  With my son, he has challenges that can negatively impact his potential and future if goals are not carefully and thoughtfully managed.  By the time a child reaches age 14, they should if at all possible, participate in CSE meetings.  It's important that teens begin to learn to participate in the process by providing input for their own self determination plan.

I walked away from the roundtable not as enthusiastic as hoped.  As it turned out, the roundtable ended up being more of a PR opportunity for Senator Ball with local businesses that hire people with disabilities.  Don't get me wrong, it is great that businesses encourage the hiring of persons with disabilities with a focus of what they offer in the work place.  There were photos taken with approximately a dozen representatives from various business receiving awards from the Senator.  Truly, it was not what I expected.  I expected the roundtable would be an opportunity to brainstorm ideas.  It only touched briefly on the concerns of some participants including myself.  I tried to provide testimony of the real day to day challenges parents often face in advocating for their child.  I tried to stress the concerns of self determination begin early on and there are many unknown or unseen hurdles.  Every step of the way is a building block.  However, the hill can be a very steep climb for parents with children who have special needs.  All the more is the reason to begin planning early, not later or as a child nears graduation or aging out of high school. 


Following the roundtable, I searched online for articles about the meeting with the hope of finding references made about planning strategies for young adults moving into the workforce or higher education.  To my disappointment,  I found only photos of the Senator standing along side business owners and representatives with awards in hand.  Again, it's important to know there are businesses that support the hiring of persons with disabilities.   The photo-opt doesn't address however, the larger and broader challenges that directly impact people with particular needs.


Although somewhat discouraged, I have no plan to give up but will keep trying to partner with our public officials in government.  It is way too important to not keep trying with every opportunity.   If we don't try to impact positive change, we have no right to complain when things are not going our way.  Minimally, we can say, we tried to be part of the solution and not the problem.
 

"A successful man is one who can lay a firm foundation with the bricks others have thrown at him."  ~ David Brinkley


It's been a while since my last post.  Much has happened since then.  My son has been successfully placed in a state funded private school for children on the autism spectrum.  Aren is in a smaller class size of approximately 12 students and 4 adults.  Needless to say the combination of smaller class size and lots of individualized instruction and help, he is doing much better in school.  My son actually enjoys going to school now and LOVES his teachers.  In this school, the teachers and administrators work collaboratively with parents as a team.  They listen to the parents concerns and work toward establishing and modifying goals.  It's the first time in a very long time, I feel to be part of the team.  It is a breath of fresh air.

Last week, I attend a workshop funded through The Advocacy Center,  Rochester, NY on filing for due process.  It wasn't completely what I expected.   Instead of being a workshop where you learn some new skill, it turned into a question and answer session.   A couple of the participants expressed a certain amount of impatience that the workshop wasn't moving along as anticipated.  I felt it also - it seemed very disorganized.  It is not a tremendous surprise as one of the co-presenters happened to be the public attorney who assisted me and my husband haphazardly with our due process complaint.  During our due process filing, she was not exactly organized and basically dragged us through a living hell.  This individual hosts mini informational sessions for parents twice a month.  I ask myself - why?  She could barely handle my case although everything was handed to her.  All of the ground work was covered.   We provided a huge file and three recorded CSE meetings.  In addition, all the evaluations my son had was given to her.  Basically, she had everything.  I've been hesitant to discuss my experience but after this workshop, it seemed to me it was just an opportunity to drum up business.  Business that this woman could barely handle when after everything was provided to her.  Was it a lack of organization?  Was it one personal problem after another which she claimed to have.  Was it an overwhelming caseload?  I don't have a good answer and will not make excuses for anyone.  All I know is, this public attorney's behavior with our case hindered on cruelty and was extremely unprofessional.  I was reduced to begging and pleading.  Finally, I had enough and had to launch a complaint with the executive director of the agency.  Even after her supervisor got involved, she was less than communicative.  She would fall off the map; disappear, not respond to my emails or voice mail messages.  Basically she made every attempt to ignore me thinking perhaps that I would give up and fade away. 

Hiring an attorney for due process filing can be prohibitive for many parents.  It's expensive to have an attorney on retainer.  Plus, if you don't prevail in your case, the financial burden falls on to the parents.  There is no chance of recovering attorney fees, (yours and the school district attorney with related fees), or expert witness fees which can be costly.  A due process case can easily escalate to $5,000.  We didn't have the money so we had to literally fall on the good graces of a public attorney.   Since there was another attorney presenting at the workshop (who did most of the talking), one participant asked about probono which means attorney services at no charge.  Attorneys will take on probono cases from time to time.  However, I believe they must have a good handle on the ability of winning the case.  The "what's in it for me" but I can't say I blame them.  Everyone wants to win and have something to show for their efforts.  With that being said, the one thing that was emphasized heavily at the workshop was probono cases would likely be taken on from a client who has done all of the ground work like I had done.   Compiling a paper trail over the course of one year for example along with recorded CSE meetings.


My former attorney asked the participants who in the room had success writing to Albany about their issues with school related problems.  I was the only one to raise my hand.  I believe I was 1 out of 20 participants because my best guess, I was likely the only one to actually work the system in that way.  I mentioned that I contact Dr John King, NYS Commissioner on Education and felt I got results.   This attorney was very quick to shoot it down stating my situation was an isolated one.  I raised my eyebrow thinking, my situation is not all that different from many of the parents in the room.  We're all singing the same tune with a slightly different melody.  We all want a FAPE for our children and on one level or another, we each have our own bag of mess to contend with trying to make it happen.  I found it suspect how quickly this attorney was trying to squelch my input.  Let us not forget that our tax dollars pay the salaries of those working at the state level.  They are there to serve not decide to help a constituent based on a popularity contest or whatever.  If we as parents file a substantiated complaint, it is up to the those that serve us to do due diligence.  It is not a favor.  They are expected to follow through and help us help our children and hold those accountable who are failing in following the law.  In this regard, write to your representatives and certainly write to the NYS Commissioner on Education if you're unable to get a FAPE for your child.  Just be sure to provide testimony and evidence to the best of your ability.  Write a well thought out and concise letter with supporting documentation.  Make it easy to read and highlight areas you want to be sure to have read.  Use post-it notes to flag pages if you're sending a copy of the evaluation.  Things like that.  You want to gain the attention of the Commissioner but not overwhelm him with information that is not well presented.  In essence, help him to help you.

Our children are the most vulnerable along with many unsuspecting parents who can be equally vulnerable.  Parents who are completely overwhelmed with the entire process of getting their child's needs met in school.  This is further compounded when public servants fail us as well.  One can't help to wonder, where is the agenda when public attorneys who are suppose to help us uphold the law turn around and mess with our heads and not protect our children as prescribed by law.


"Truth is by nature self-evident. As soon as you remove the cobwebs of ignorance that surround it, it shines clear."  ~ Mahatma Gandhi

Today Is The First Day...

In matters of truth and justice, there is no difference between large and small problems, for issues concerning the treatment of people are all the same.   ~ Albert Einstein ~
 
Yesterday, the CSE chair agreed to a new placement for Aren.  He will go to a school with a focus working with children on the Autism Spectrum.  It was a good day and long overdue.  I left the meeting with a mix of emotions.  I hope this will be the most appropriate setting for my son giving him the opportunity to catch up to where he should be for a child of 9 years in the 4th grade.  My son has learning challenges and demonstrates he can learn and he does. It takes him longer where he needs lots of opportunities of practice. He gets easily overwhelmed.  Unless we can appropriately identify what works for him according to his learning style, he will be at risk of failing.  I have been touting this concern since the end of 1st grade.  I was told in a parent teacher meeting by the principal when my son was in 2nd grade that he would catch up in the 4th grade!  I was aghast to hear a principal make such an assertion.  That was the day I became very, very scared for my son.

On one level, everyone got what they wanted for Aren but not everyone had the best intentions.  What happened yesterday was a concession by the school district; basically their hand in large measure was forced.  The school district didn't advocate for the recommendation.  I did.  I fought for it long, hard and hope it's not 2 years, too late.  I have ongoing concerns that are real and valid.  My situation is unique because I am a white parent raising an African American male who has a learning disability.  There is still a great deal of injustices in our society regarding the education of young, black males.  Just recently, I was watching an documentary with Tavis Smiley, "Too Young to Fail".  It was disgustingly shocking and disturbing.  I pay attention because I must for my son's sake.  More people need to pay attention because it's morally correct to do so.  It's a huge problem that will not go away until prevailing, prejudiced attitudes are eradicated.

Watch the full episode. See more Tavis Smiley.

Disproportionately, statistics are showing that we start to lose black, male students in 3rd and 4th grade.  In my mind this ties in to the fact that if children are not reading for understanding by this same time period, it's questionable if they will ultimately become lifetime readers.  Consequently, it leads to an undereducated, under served population in our society.  Ultimately, this under served population feeds prevailing attitudes and stereotypes among whites about young, black men.  With all of this being said, I have much to be concerned about regarding the education of my brown skinned child.  His skin color is the only difference.  By the way, my child has a budding awareness of the inequality although he doesn't fully understand it.  It makes me feel very sad when he tells me he wants to be "white".  I try to tell him that being white is overrated.  He wants to change a fundamental part of himself he has no control over.  None of us chooses our race.  We need to move away from this notion being born white is like winning some kind of lottery!

It has taken me over 2 years to get a seat for my son in the school for children on the spectrum.  I have often wondered if my child was white, would he had gotten a referral/placement sooner.  Would his educational needs been served sooner?  These are tough questions but they need to be asked.  I live in a homogeneous community so my concerns are valid.  Only this past summer at a birthday party for a classmate of my son did I learn, his 'white' friend was referred out of district because the special education teacher advocated for it.  This is the same special education teacher for my son.  The white boy has a diagnosis of ADHD while my son has a PDD-NOS diagnosis.  I asked the mother of the child, did they have to advocate for it?  Her reply was simply "no, it was the district's idea".  I wanted to know if her child was evaluated for an ASD but she said, it's something they've been thinking about doing.  It was alarming, disheartening and my fears were palpable.

There are some parents who would sooner pull their children out of school then fight against the system.  In my mind, it's the line of least resistance.  My child deserves and is entitled to a FAPE.  My child will be at a greater risk of being under served if I home schooled him.  I would be concerned of short changing my child on many levels if I use the home school approach.  If you live in a communal type community perhaps it works well for some kids.  I don't have it.  My resources on what I can give to Aren in the way of social interactions and intellectual stimulation are limited.  Plus, and most importantly, he absolutely deserves to be educated with his peers.  He deserves an equitable education.  If we want to see positive changes in our schools, it needs to begin with us.  Parents are the ground crew for change.  We simply can't give up.  Persistence pays off and we must hold those responsible for educating our children accountable.  I will monitor my son's education to ensure in all ways possible that his needs are being served to the fullest extent possible.