Stepping Up Related Services - Extended Year

There's a bit of jubilation in the air. An email came in from the CSE Chair. My husband is copied on all correspondence and he said, "you're going to want to read this". I was enjoying lunch at the time. Thinking it was something that was going to get the acid started in my stomach, I thought I would finish my meal. Tony, my dear husband, said "I think you're going to like this". I've had such a long, struggle meeting eye to eye with the district that I couldn't imagine anything at this point would make me happy. The district has been less than agreeable.

Finally, with a certain amount of trepidation, I opened the email. There was an apology from the Chair with something about he intended to discuss it at the meeting but it fell to the way side. I thought, hmm, if this piece was predetermined it should've appeared on the draft IEP. I can't help to question the sincerity and motives of the distrist as they appeared only interested in their own agenda. At the meeting, I shared background about my son that got their immediate attention. Things that frankly, I shouldn't have been compelled to do but all information about Aren that can help the district meet his educational needs is all that matters. I think the change in these considerations are squarely the result of disclosing more pieces of my son's world.  Sometimes, people can be short  sighted and blinded by their own self interests.  When people are not exposed to different cultures, it creates a tunnel vision.  And, we continue to have serious issues connected to race especially in homogenous communities.  Thoughts that are clouded by prejudices have the real potential of impacting civil liberties.  I'm not saying that's what happened.  I'm saying, it's a real possibility.

I realize, what is apparant to me might not be obvious to others unless we open a window to help them see. The district loses sight that parents bring very important life experiences to the table. When parents want to bring them in to show things from their point of view, districts need to listen carefully and with sincerity. Many parents are only wanting to see their children succeed and receive the services they are entitled to under the law. Districts need to stop saying "we don't see it here" and attempt to convince parents, if they don't see it, it doesn't impact learning. Rubbish. Everything about a child has the potential to impact their education. And, there are somethings more obvious than others.  That is where active, careful listening steps in.

The district has offered an extended school year ESY for my son!  On the draft IEP, this category was a negative.  This piece was removed from last year's IEP.  It has been demonstrated that once a dsitrict removes a service or accommodation, it's usually at the point of no return.  This is why I'm skeptical of  the district's original intent.  I know, you're probably saying, what does it matter so long as he's getting the services.  Well, it matters because there was a huge struggle to arrive as this point in the destination.  And, it came about with a great deal of stress.  In my mind, based on my son's diagnosis, the extended year is a given because he is lacking behind by two years in reading!  Since the very beginnning, it's repeated over and over, my son needs a lot of repetition so again, ESY is absolutely necessary.  That is why we have these laws in the first place.  It is to ensure children with disabilities are given the same opportunites  to succeed as non-disabled children.  That translates into additional accomodations.

Included in the ESY, Aren will receive speech and language twice each week and occupational therapy once each week.  The district is looking into adding in academics so my son can continue to work on math.  All of this is very positive for my son and I'm elated the dsitrict has come across.  However, I'm still holding out for the dsitrict to restore the PDD-NOS, ADHD and add in Dyslexia and Non Verbal Language Disorder NVLD.   These are what my son has been diagnosed with and it's important it's in the IEP.  I don't know where things will change in the future and as long as my son is in school, he needs these alerts.  It is important because anyone who interacts with Aren, must have a clear understanding so that they can appropriately meet his needs and make adjustments wherever it's needed.

Yes, I'm doing a little dance for my son.  This is not about me and winning against a district.  It's all about my son getting what he needs.  With that being said, it's appropriate to feel a bit celebratory in this regard.

Focus On The Positive

I found the following story while searching for other blogs on special education.  It is so inspiring that I have to share it here:



I hate it when I hear what my son can't do or struggles with at school.  It's not that it's not important because I know we must find ways to improve areas of weakness.  I just don't like defeatist attitudes.  I say, don't tell me what you can't do, show me what you can do.

CSE Meeting and Loose Ends

“Coming together is a beginning.  Keeping together is progress.  Working together is success.”  ~ Henry Ford ~

Today is the annual review CSE/IEP meeting for my son.  He will be moving into the 4th grade come September.  I approach this meeting with a great deal of apprehension because this school district hasn’t created an environment of trust or assurance they are interested in meeting my son’s educational needs.  Let me recap a little bit to help bring this full circle.

In response to the due process complaint, there is a proposed solution.  It includes:

Compensatory educational and related services in speech, language, communication, social skills, reading comprehension, OT, math tutoring and services to address executive deficits.

The district was to immediately upon receipt of the complaint to arrange for an assistive technology evaluation.

The diagnosis of Autism Spectrum Disorder (PDD-NOS) be restored to my son’s IEP

And, the IEP include dyslexia and non-verbal learning disability with services to address manifestations and deficits resulting from the additional disabilities.

The above proposed solution is to ensure my son is receiving a FAPE – free and appropriate educational as it’s expressed by law under IDEA 2004.

Yesterday, I received the draft IEP.  I was shocked to see that all related services which includes integrated co-teaching services, speech/language therapy, O/T and counseling were removed from it.  How can this be?  I hope it’s a typographical error.  It has to be – right?  Because if it isn’t, there is no way my son will receive the FAPE he is legally entitled to.

Fast forward several hours…

Although I gave prior written notice I would record the meeting, the CSE wouldn’t permit me to video record it.  In fact, he was both surprised and annoyed.  I had to tell him I gave prior notice and he said it didn’t matter.  He actually contacted his attorney and was advised we weren’t permitted to use a video recording device.  This placed us at a disadvantage as I had no legal counsel.  I did note it officially for the record, I wasn’t permitted.  Thankfully, I like to plan ahead and made use of my audio recorders.  I have a handheld recorder. Tony has an recording device on his computer and we used it.   Recently, I purchased a LiveScribe which is a wonderful device.  It works great for capturing both text and audio.   So, if one recorder failed, I had a backup.  It is important to record CSE meetings.  I can’t emphasis enough the importance of it.  I did ask the CSE chair to tell me in writing why I wasn’t permitted to video record the meeting.  I asked him to show me in the regulations where it’s not permitted and he didn’t produce it.

I requested the 4th grade special education teacher to attend the meeting to gain visibility to our son’s concerns.  Of course, the person wasn’t in attendance.  And, of course I asked why.  The elementary principal stated they haven’t identified the teacher as yet and will know in June.  I will be following up so I can meet the teacher.

We got the the related services restored.  And, finally Aren will receive five 30 minute speech and language therapy sessions.  Aren should have received daily S/T since kindergarten.  The district continues to refuse to  change the classification to Autism and has yet to restore the PDD-NOS and add in the dyslexia and non-verbal learning disability which speaks directly to Aren’s language deficits.  The school psychologist continues to insist that not only Aren doesn’t have an autism spectrum disorder he doesn’t exhibit the high distractibility after briefly observing him in the cafeteria at lunch time.  Later on, the school psychologist was contradicted by several other team members regarding Aren’s level of distractibility.  Aren needs an assistive technology evaluation which remains outstanding on the “to do” list.  The chair asserts he is trying to get it done before September.  Right now, it’s nothing but words.  The district will continue to be in violation if they don’t fulfill this piece.

I had to ask the district why they refuse to acknowledge my son has an ASD while he receives NYS Medicaid because of his diagnosis and disability.  It was necessary to tell them that because my child was adopted in NYS and has a disability, he receives the benefit.  The entire team appeared shocked with this revelation.  The chair immediately swung around and jumped over to the file cabinet to try and find the information in the file.  He said, “we’ll have to see about that with the state!”.  I told him to “go ahead”.

This district continues to attempt to diagnose my child which as far as I know, is against the law.  They don’t have the authority to diagnose my child or any child for that matter.  My child was considered “at risk” when we adopted him due to his race and gender.  It is further compounded with having a disability.  The fact is, African American boys are more challenging to place compared to girls.  It’s funny how people think sometimes; how one child is more desirable compared to another on the basis of gender and race.  It makes my son all the more endearing to me.

Since the school district is moving to an earlier start for the 4 – 6 grade students, I requested after school homework help.  The answer is “they don’t do it”.  Right now, due to learning deficits, Aren would benefit from the extra help and he should have it.  The district saying “we don’t do it” is not acceptable.  If Aren needs the extra attention to help with learning and reinforcing concepts, by law he should have it because it’s his individual need.  Especially so when I keep showing them how poorly he is doing with the homework assignments.  Aren shouldn’t be making up the work during recess.  Recess is a time for a child to blow off steam.  It doesn’t help him feel included when all the kids are playing and he’s stuck inside.  Making my son do work during recess is not accommodating his needs plain and simple.

Alan Tepp, Psychologist who originally diagnosed Aren with PDD-NOS when he was 3.5 years old and did the IEE attended the meeting via phone conference.  He is also the psychologist who felt comfortable saying our son has intellectual disability formerly categorized mental retardation.  He was there to present his professional opinion against our neuro-psychologist from NYU.  He stated he didn’t read the NYU report but was supposed to be presenting arguments against it.  Really?  I had to step in and say he had plenty of time to read it.  In fact, he had the report back in October 2010.  I am not afraid to speak up.  I told the team that Tepp’s refusal to read the NYU report creates an imbalance and he can’t speak about it.  I also went on to say that I requested he not attend the meeting as he had his time back at the October CSE meeting.  Of course, the chair didn’t like what I had to say but it had to be stated for the record nonetheless.  I also stated for the record, we disagreed with Tepp’s evaluation because he failed to do independent testing and yet comfortable to consider our son to have an intellectual disability.  I also stated that he is a generalist in his field not an expert per se in autism spectrum disorders. He didn’t like it but again, it had to be said.  Guess I succeeded in not being popular pointing out the 300 pound gorilla in the room.  I couldn’t care about hurt feelings in this meeting.  My focus was and is on my son’s educational needs.  And, speaking the truth; keeping it real.

Our NYU expert stated we need to have a M.Ed in autism research and analysis to come in and do an in class assessment.  We concur with it, feel it’s  the best and most reasonable approach to resolving our differences.  The CSE Chair stated he would look into it but it remains to be seen.  We assert if they truly want to gain clarification regarding Aren’s in school requirements, it needs to be done.

We made some small gains for Aren today but we haven’t achieved all of the objectives.  In the coming days, I will be following up.  I anticipate hearing back from the CSE Chair regarding the assistive technology evaluation and IEE.  I hope the district steps up to the plate and does the right thing by earnestly striving to meet my son’s educational needs.  I’m  here for the long haul.  I will not stop advocating for my son.

Welcome To My Resolution Meeting Experience

It has taken me a while to write about this experience.  For the sake of helping other parents understand a process, I’m sharing my experience with you.  I’m feeling motivated and more empowered due to my involvement with Partners in Policymaking.  I’m fortunate to be involved with a very supportive and caring group of concerned people.

Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen.  ~ Winston Churchill ~

Following is what transpired at the recent resolution meeting.

In response to a due process complaint, the school district must follow up with a resolution meeting.  Our due process complaint was filed at the end of March.  The resolution meeting took place on April 6, 2011.  The following individuals were invited to attend the resolution meeting:

CSE Chair, Jr/Sr Principal, School Psychologist, our Neuro-psychologist expert, me and my husband.  We didn’t have a choice who the district would invite.  We didn’t want the principal has he had no prior visibility to our concerns.  Therefore, he was invited by the district as a disinterested party.

Since we were not permitted to record the resolution meeting.  The following are my notes, thoughts and observations from it:

The Jr/Sr. principal was invited by the chair to attend the resolution meeting as a “disinterested” party.  He arrived at the meeting 15 minutes late which cut our expert’s participation to 45 minutes as she had a hard stop at 12:00 PM.  We informed the district ahead of time that our expert would be available for one hour only.   Another example of not allowing for full participation.

The Jr/Sr principal suggested that we went to NYU because we wanted an agreement; in effect a collaboration that Aren has Autism.  We were offended by the presumption that we want our child labeled for the sake of being labeled.  We went to NYU because they are one of the leading centers with an expertise of children on the spectrum.  Further, we were seeking an impartial assessment.  Alan Tepp, M.D.,  is not a leading expert in Autism.  It is insulting beyond measure that we would put our son through rigorous testing for the sake of it.  Further, why would our NYU experts put their solid reputation at stake by making a false diagnosis for the sake of satisfying parents and some agenda.  Nice try but it has no foundation.

CSE chair said the resolution meeting would run 2 hours.  We didn't receive advance notice of the meeting length - it was left vague.  He opened the meeting with reiterating why we were there and why the meeting wasn't being recorded.  In effect, wasting time.  We all knew why we were there and the meeting wasn't being recorded so the introduction wasn’t necessary.  Everyone deserves the courtesy of anticipated timeframes for meetings.  My husband works outside of our home and needs to schedule his time accordingly.  We need to know how long meetings will run so we can plan accordingly.  It is a common courtesy that wasn’t afforded to us.

CSE chair said we were there to discuss how our complaint would be resolved.  We didn't conclude with a recap of how our issues would be resolved.  On all points in the complaint with the exception of the Assistive Technology Evaluation, resolution of our concerns will be determined at the CSE meeting according to the CSE chair.   The annual CSE meeting is to discuss the following school year – not resolve a due process complaint.  An impartial hearing is the place to resolve disputes.

One issue in the complaint was a lack of parenting training.  None was ever offered to us so we could learn to effectively work with our son’s disability.  The CSE chair said his idea of addressing the parent training is to hold monthly meetings for all parents.  The way I understand it, we are supposed to receive training in the individual researched based methods they are using to teach our son.  Not a blanket of one size fits all, for all parents.  We don't see this as addressing our individual needs with our son.  Further, it doesn't address the inconsistency of what they say Aren can do at school to what we see at home.  If Aren is able to work satisfactory on his own ability at school, he should be able to fully demonstrate it at home.

The CSE chair  wanted to know how we knew Aren was receiving O/T in a common area (stage in cafeteria).  Keep in mind, our son has significant challenges with staying focus which results in him being easily distracted.  Aren should have been receiving O/T in a quiet area.  We learned at a parent/teacher meeting to discuss concerns about the O/T, yelling, speaking harshly to Aren.  The elementary principal  told us they've always used the stage due to lack of space. The O/T concurred with the principal adding it wasn't uncommon to provide O/T in stair wells at the Dover Plains school.   Well, needless to say that raised an eyebrow or two.

The chair said we can go to an impartial hearing in a manner that was "threatening" in it's delivery.  The fact is, an impartial hearing is the step that occurs following the filing of a due process complaint.  And, we are the ones who filed the complaint in the first place!

The school psychologist states Aren doesn't fit the social component of a person with Autism per se as Aren is highly social.  Further, the psychologist who has an MA by the way said PDD-NOS is the umbrella for the disability.  We explained that PDD-NOS is an ASD.  Do you think we need to explain to a school psychologist what is an autism spectrum disorder?

The psychologist denies she was advocating for a MR classification back in June 2010. (By the way, MR is now Intellectual Disability or ID.  MR is used here as that was the terminology last year.)  At the conclusion of the June 2010 meeting, she said they would do more testing.  We needed time to think about it.  We made several attempts that went unanswered to reconvene before the end of the 2009-2010 school year.  In effect, we never had the opportunity to discuss testing in length, neither were we invited to discuss it so we would gain a better understanding.  Further, the psychologist was asserting that Aren's IQ suggested MR.  She is now denying it but continues to contradict herself. 

The psychologist went on to say Aren's IQ is indicative of his school performance but he is not MR.  Again, a best we can hope for approach.  We have yet to hear of any techniques they are willing to use to help Aren increase his school and home performance.  We say, his learning style and ASD is not being appropriately addressed to meet  his education.  And, his IQ scoring is adversely affected due to his disability.

Additionally, the psychologist went on to say they don't see the obsessive interest Aren has with Pokémon in school.  We told her, we don't permit Aren to bring Pokémon related items to school as it created a problem last year.  Aren continues to obsess about Pokémon.  She also asserts that although Tepp diagnosed PDD-NOS initially, he can't say Aren has Autism which is a contradiction.  PDD-NOS is an ASD.

We raised our concerns about what research based methods they are using to teach Aren which the chair said he needs to discuss with the special education teacher and it would be discussed at the CSE meeting.  We have been asking this question repeatedly with no real concrete answers to it since the beginning of the school year.

The chair suggested that Tepp retest Aren but we do not want Tepp.  We consider his opinions biased and slanted toward the best interest of the school district and not our son.  Further, Tepp is not an expert in ASD.  We have a right to choose a professional privately for an IEE.  We chose the NYU Child Study Center to provide a neuro-psychological evaluation because they are experts in the field of ASD.  This district is trying to discredit professionals of an organization who are at the top of the field while giving validity to Tepp who is a generalist and not a specialist per se.

If we are required to have Aren re-tested which at this point we are strongly opposed, it would have to be at the district expense and at our discretion.  It would have to be a professional with a high level of experience and expertise in the field of ASD and more likely it will cost much more than $900 for a complete and thorough evaluation.  Comprehensive testing is very expensive.

We assert that Aren hasn't been appropriately tested by the school in a timely manner due to his race which is based on statistics.  Disprotionately, African American children are evaluated later than their white counterparts.  Statistics show this and we are of the opinion this is what has happened at Webutuck.  “African American children in poverty are 2.3 times more likely to be identified by their teacher as having mental retardation than their White counterparts.”   The race component of Aren fits the African American profile.  http://www.nccrest.org/Briefs/students_in_SPED_Brief.pdf   Although special education teacher wasn’t at the meeting, she has suggested that Aren’s IQ would go down as he got older and continues to label him as slow to learn.  Aren was profiled and labeled beginning in kindergarten at Webutuck under the special education teacher with her ongoing assertion he is slow to learn.  The chair defends the special education teacher.  We have viewed our son’s file and it is stated in several places by the special education teacher expressing her opinion of “slow to learn” with no suggestion how to correct deficits or gaps in learning. 

The school psychologist looked at me as if I had a horn growing out of my head to suggest a mentality continues to exist in the 21^st century that blacks are viewed by some people as less intelligent than whites.  It is a bias that can adversely impact the education of black children.   We know that people bring their prejudices and biases into everyday life and are influenced by it.  It is a real concern I have for my child.  Frankly, she is either in serious denial, extremely ignorant and/or needs to get out more and stop viewing society through a moving car.

The chair went on to say he made an unannounced visit to Aren's class with only the knowledge that Aren is African American.  He stated he couldn't determine who our son was from the four African American boys in the class because he is a "student" and behaving as a "student".  That Aren had to be pointed out to him.  He is outwardly lying because I sent correspondence numerous times from June 2010 and beyond to the school with Aren's picture in plain sight in the letters.  It is in the file.  (Sample 1, see letter dated 6/5/2010 with Aren's picture on it.)  The chair had prior knowledge of Aren's appearance.  He is trying to prove through lying that Aren blends in. Or, is it racist to suggest that all black children look alike!

It is our opinion this CSE Chair will waste time and money to achieve an objective that doesn't have Aren's best interest in meeting his educational needs.  It is our opinion, the CSE Chair is fighting to win for the district putting the concerns of our son dead last.

The jr/sr principal said from his point of view, in so many words, we will reach an impasse.

The one thing the principal agreed with us about are unannounced visits.  He stated he never announces visits to classrooms so he can gain a real assessment of what is taking place.  Bravo Mr. Principal for wanting to keep it real!

Regarding an unannounced visit by our expert, the chair asserts the school doesn't know her and therefore she needs to make an appointment.  We said, she could certainly introduce herself and show ID.  In addition, I could be there when she visits and personally attest to who she is. 

We do not find it written in the law that our expert must make a classroom visit.  Her evaluation, report should speak for itself as well as the Dr. offering explanation of it at the IEP meetings.  So far,  our expert as well as me and my husband have not been made to fully participate as demonstrated by the late arrival of by the principal.

The district is seeking to waste $$$ to fight to be right during economic times where budgets have been tightened by demanding our expert visit the classroom according to their terms.  An appropriate assessment would be an unannounced visit where there is little chance of a “dog and pony show”.  We all know that people tend to put their best foot forward when expecting company.  If they are so confident they are meeting Aren’s needs, they should feel very comfortable allowing our expert to drop in.

Looking back, we were compelled to have a private O/T evaluation in July 2010 at our expense because the district failed to do it.  We advised the school appropriately of our intention; gave them the opportunity and told them we would bill the school for it.   We did and they never paid for it.  We have not forgotten about it.  We want to be reimbursed for it.

Lastly as a side note:  Webutuck is contracted with Four Winds.  Tepp formerly worked at Four Winds.  We do not know if he continues to offer consulting for them or receives referrals from them.  Tepp’s involvement with the school district might be a conflict of interest as his relationship with the district is financially advantageous.  In this regard, if Tepp continues with a  direct or indirect relationship with Four Winds, it is in Tepp’s financial benefit to side with the school district which in effect taints his judgment regarding our son.

Partners in Policymaking

Everything in the world we want to do or get done, we must do with and through people. ~ Earl Nightingale ~

Last weekend, I attended the Partners in Policymaking (PIP) seminar at Cornell University.  It was a powerful and empowering experience.  PIP is a leadership training program for persons with disabilities, parents and caretakers.  The basis of the program is to gain a better understanding of policies and issues that directly impact persons with disabilities.  Participants are partners.  We proactively pursue positive changes in systems to influence a different way of thinking about people with disabilities. We learn to be better equipped at working toward creating positive change in policies at all levels.

My motivation for becoming a partner is due to the challenges I've been facing seeking a FAPE for my son.  Over the course of the past two years, I've learned about the alarming rate parents struggle with school districts to have their children's educational needs appropriately met.  It is widespread across the U.S.   I find the struggles parents endure negotiating a flawed system unacceptable.  Although we have laws in place to protect people with disabilities, it is not enough.  By and large, many caregivers lack the ability to positively partner in a collaborative effort with agencies responsible for making important decisions that directly impact quality of life issues.

I'm privileged to be part of the 2011 group.  I look forward to learning more and finding effective ways to influence policies.

"Welcome to the real world", she said to me
Condescendingly
Take a seat
Take your life
Plot it out in black and white
Well I never lived the dreams of the prom kings
And the drama queens
I'd like to think the best of me
Is still hiding
Up my sleeve

They love to tell you
Stay inside the lines
That something's better
On the other side

I wanna run through the halls of my high school
I wanna scream at the
Top of my lungs
I just found out there's no such thing as the real world
just a lie you've got to rise above

So the good boys and girls take the so called right track
Faded white hats
Grabbing credits
Maybe transfers
They read all the books but they can't find the answers
And all of our parents
They're getting older
I wonder if they've wished for anything better
While in their memories
Tiny tragedies

They love to tell you
Stay inside the lines
But something's better
On the other side

I wanna run through the halls of my high school
I wanna scream at the
Top of my lungs
I just found out there's no such thing as the real world
Just a lie you got to rise above

I am invincible

As long as I'm alive

I wanna run through the halls of my high school
I wanna scream at the
Top of my lungs
I just found out there's no such thing as the real world
Just a lie you've got to rise above

I just can't wait til my 10 year reunion
I'm gonna bust down the double doors
And when I stand on these tables before you
You will know what all this time was for

He that does good to another does good also to himself. ~ Lucius Seneca ~