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.

Priorities

"Education should be one of our top funding priorities; talking about it does not help the teachers and students who desperately need promises fulfilled."   ~ Solomon Ortiz ~


It might seem like the obvious thing to say but my first priority are my children.  Often times when I interface with school personnel, it seems to be a strange idea - children first.  It feels like no one wants to talk about the large, blue elephant in the room although so difficult to ignore.  Being assertive is a skill I've worked on over the years.  I've learned to embrace it like a second skin.  This is not to suggest I don't have days of feeling unsure or anxious because I do.  I must fight those negative feelings when it rises to the surface and starts to weigh me down.  I must push the negativity away remaining focused on the goal - education advocacy for my child.  It is my top priority.


The door is constantly revolving in my advocacy work.  There is no time to rest.  I keep a vigil  on my child's education.  It is constant and expect will be until he graduates high school.  Yes.  I absolutely expect my son to complete his education.  Just the other day, Aren asked me, "what happens when I finish high school?"  Thank goodness he is thinking ahead.  I told him it will depend on what he wants to do.  He can either go on to further education, technical school or straight to work.  I hope it's the former.  We push education in my family.  Life is far more interesting when we're always learning something new, I believe.  Exercising the mind is not underrated in my opinion.


Aren is now in a different school district.  It seems to be an improvement.  At least, the teachers are correcting his capitalization.  My son tends to be disinterested in using correct form in writing.  He doesn't pay attention to the details.  I was very happy to see the teacher used a red pen and illustrated 'A' in place of 'a' in my son's name.  He is in 4th grade but I'll be doggoned as it's the very first time, I've seen him given correction.  When I brought it to teachers attention in the past,  I felt like it was asking or expecting too much for my son to learn and apply the correct rules of grammar, punctuation and capitalization.  I'm breathing a sigh of relief but I will not lower my guard.  It's only the beginning of the school year and there's a way to go before seeing marked improvement.  I do however, remain hopeful.


I have another CSE meeting tomorrow hence revolving door.   I just came off a meeting in July.  We, meaning my husband, me and the team, need to work out a plan for behavior modification when Aren gets frustrated with challenging work.  In his view, when it's too hard, therefore give up.  Giving up is not an option when the work is challenging.  We must forge ahead with practice, practice and more practice because this is what he needs - lots of opportunities to practice.  My biggest concern is the attendance of the school psychologist (SC).  This is a subcommittee meeting and based on the mandatory participants, the school psychologist is only required at a subcommittee meeting when:  1)  A new evaluation, 2) A more intensive program.  What concerns me about the SC is that back in 2010, she was a proponent advocating for a IEP classification change to intellectual disability formerly MR.  This SC also refused and dismissed Aren's Autism Spectrum Diagnosis stating "she doesn't see it".  The SC's assessment was amidst highly credible evaluations by professionals in the top field of Autism research.  Additionally, she wasn't providing any concrete data in support of her "opinion".  Frankly, I don't want her input regarding my son.  She has preconceived ideas based on who knows what and her credibility is in question.  How can the SC offer meaningful contributions when she refuses to acknowledge my son's disability?  I have placed in writing to excuse her from the meeting however, the new CSE Chair holds firm and states her attendance is required.  As I've mentioned in previous posts, I keep a paper trail.  It is absolutely necessary if there is any indication the priorities regarding my son's appropriate education isn't at the very top of the agenda.

I realize I started my relationship with the school district with deposits of trust in the bank.  I took it for granted they would have my child's best interest at the heart of decisions that directly impacted our lives.  This idea of trust is played out by many parents.  It's a recurring "theme".  Frankly, why wouldn't we trust them to do the obvious; educate our children according to their individual needs.  I trusted them to do the right thing and found out it was misguided.  We give people the benefit of the doubt.  When trust is broken, it is often very difficult to repair.  It's not for lack of desire.  I want to trust those that hold my son's education in the palm of their hands to make decisions without a hidden agenda.  However, I've come to realize, as a parent, I must not assume based on an idealist mind set.  It is folly to do so.  I take responsibility and hold an active and proactive participation in my son's education.  It is necessary to offset obstacles to a FAPE.

“I'm not upset that you lied to me, I'm upset that from now on I can't believe you”   ~ Friedrich Nietzsche ~

We've Only Just Begun

Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning.  ~ Albert Einstein ~

My son has started the new school year in a different school district.  The district has a BOCES PEACCE program that uses the TEACCH approach.  TEACCH means:  Treatment and Education of Autistic and Communication Handicapped Children.  The elementary program has three classrooms in the public school.  Aren is in a very small class of 6 students with the special education teacher and two assistants.  I'm impressed with the layout of the classroom.  Under the TEACCH method, each student has their own, small three-sided work space referred to as an "office".  It looks a little bit like an office with shelving on one side, a section of white board, small desk and chair.  It's design is intended to limit distractions so children with distractibility challenges can focus by limiting surrounding stimulus.

The BOCES program is not the first choice for my son.  I have first impression reservations about it that I will discuss here.  Two days into the start of the school year, my son comes home crying.  He kept telling me the teacher is complaining about his shoes.  He has brand new black, Sketcher sneakers with a Velcro closure.  Let me just say first off, it is challenging finding shoes to fit my son.  He has wide feet and at age nine, he is still unable to tie shoe laces.  Shoe lace tying is a fine motor skill many of us take for granted.  When my son attempts to make a bow, he pulls a knot instead.  This is an issue I tried to get worked out with his OT in the 2nd grade.  More times than not, my son was walking around dragging his laces.  Either the tie would come undone or he would fiddle with them.  My son's feet toe in slightly so the combination of it and untied laces is a disaster waiting to happened.  My son still falls when he runs so you can only imagine what could happen if the laces aren't tied securely.  Aren will resist doing challenging work and exercises if he can get away with it.  Learning anything new involves some discomfort until there's a level of proficiency.  My son must be willing to practice and it can be a large chore to get compliance from him.  I'm human and I get tired.  When it came to the shoelace battle, I'm "guilty" of taking the line of least resistance - I buy shoes with Velcro.  I try to impress upon my son that one day, we might not find shoes in his size with Velcro especially if he's interested in a sport.  Aren likes basketball and the shoes for it do not come with Velcro.

Back to where I started regarding teachers vs. shoes.  It seems his new teacher was accusing my son of deliberately and obnoxiously making noise while walking in the corridor.  When my son was sobbing and yelling at me "it's not my fault", the little hairs on the back of neck was standing on end.  My thoughts are racing and I'm thinking, "what the heck is gong on"?  He is supposed to be in a class and program designed to work with children who have PDD-NOS.  My school district who provided the referral to BOCES told me, it's a program for children who have the disorder.  How can a teacher in this program admonish my son for making noises in the hall with his shoes!  So, I'm asking my son attempting to make sense of what happened.  Automatically, I assumed (something I should never do as it's a personal creed) that the sneakers were squeaking as he walked.  It's a reasonable assumption.  In fact, I've experienced it myself from time to time.  I think many of us that wear sneakers might have run into this little problem.  It's not intentional and in fact, it can be downright unpreventable on some floor surfaces such as in hospitals, for example.  Anyway, it wasn't squeaking; it was a different sound - a thumping type sound.  Immediately, I spoke to my husband about it and he was as alarmed about it as I was.  I said, we have to take Aren to school and witness it for ourselves and talk to his teacher.

The next day, we drove Aren to school.  As we're walking down a very long corridor with him, sure enough, his feet hitting the floor with each stride made a "thumping" sound.  I'm watching as he's walking and I'm starting to think, the shoes are new, not broken in and I bet because of the stiffness, he's not bending his toes completely and so he's kind of paddling along.  It wasn't terribly loud or immediately noticeable.  I had to listen for it, in fact, I had to remind my husband, "listen to him walk".  The halls were relatively empty because we arrived before the bell.  The only exception was a teacher or two passing on their way to wherever.  In other words, it wasn't all that loud or outwardly annoying in our opinion which made the teacher's annoyance all the more bizarre.

We had to explain to Aren's Special Education teacher that in fact, he wasn't deliberately being obnoxious and the sound made by his walking couldn't be helped.  We also had to explain the shoe lace tying challenge and shopping for the very limited availability of Velcro shoes for him.  At no point in the conversation did the teacher suggest we provide laced shoes so the OT can work with Aren on it.  The only real satisfaction I got was meeting face to face with the teacher and not allowing the situation to get out of hand.

Yesterday was the school night open house, meet and greet with the classroom teachers.  It's also the time to get an overview of the day to day schedule for our children.  There was a nice welcome meeting in the school cafeteria followed up with the parents and teachers meet/greet.  During the meeting, one very outspoken parent was visibly tense and stressed.  She expressed concern her daughter was bringing work home with only part of her name "Court" for "Courtney" written at the top of the page.  The mother also said, her child is unable to spell with word "family".  The parent expects minimally, her child should be shown how to write her name as well as the correct spelling of words.  I agree.  It's a reasonable request but in fairness, I don't know the child, parent or situation.  What I do know, is the mother was visibly and outwardly concerned.  She went on to say, the same thing happened last year.  The mom expressed concern she wants her daughter to graduate with something more than a statement her child attended school.  It was a feeling of Déjà vu for me and my husband.  It instantly made me recall similar experiences of frustration with teachers and the CSE chair in my home school district.  I wanted to offer the parent some assistance but hesitated not having all the information.

I realize our children having learning challenges of varying degrees.  However, if a child misspells their name or words, how much effort is it to write the correct spelling on the child's page as reference?  It seems to be a minimal expectation.  I understand doing repetitive work and constant reteaching can be taxing but this is how my child  and many of our children learn.  Perhaps it's how Courtney learns as well.  She  may not be able to get it the 1st, 2nd or 3rd time due to processing issues.  I know that happens with my child.  He benefits from endless repetition until it's absolutely established to be no longer necessary.  If a student continues to misspell their name, help them by showing them the correct way.  How long does it take to write C O U R T N E Y to illustrate and demonstrate?  We need to think outside of the box with our kids.  Just as I'm writing this, I'm thinking, if the child misspelled their name 25 times a day, on every piece of paper, the child might benefit from a visual aid.  So that each time the child is writing their name, she has a reference.  Or, print out stickers with the child's name on it and stick it on the child's work next to the misspelled word.  This is just one idea.  I would love to hear more.  I felt the parent's frustration as if it were my own.  I was able to clearly relate to it.

My son was accepted into a school with a focus of teaching children on the spectrum.  However, their enrollment is strictly limited and enforced.  I'm waiting for one seat and my son is next in line.  I remain hopeful for the placement for him because my child needs to be in a supportive atmosphere with a team of educators who fully understand the difference between learning challenges and obnoxious behavior.

"Everyone enjoys doing the kind of work for which he is best suited".  ~ Napoleon Hill ~

A New Beginning

When the world says, "Give up," Hope whispers, "Try it one more time."  ~ Author Unknown

"It's not whether you get knocked down; it's whether you get up."  ~ Vince Lombardi

This new post calls for two quotes.  It has taken me two plus years to arrive at this place.  It wouldn't have happened if not for my determination to not give up easily.  Injustice is the driving force and sticking up for the underdog.  I'm an impassioned person for the underdogs in life.  I guess it has much to do with the fact, I can relate to it.   My personal experiences of having strength of character to rise up against a tower of odds stacked against me is part of who I am.  I'm not special but I am very determined.  Still, injustice leaves a bitter taste in my mouth and ignites me to action.

After a long climb navigating a very challenging education system, sleepless nights and many bouts of anxiety my son has finally received out of district referrals.  I don't want to say I've won because in my mind it shouldn't have been a battle in the first place.  My approach every step of the way was advocating for my son's educational needs and entitlement to a free and appropriate education under federal and state law.  I've never wanted more only what was and is appropriate for him.  I started out naively believing the school will recognize my child's needs and take care of it.  I found out it is not that simple.  In fact, it's not simple for many parents who have children with educational needs in the public school system.

It was the school district who drew the line in the sand.  When I wanted to play softball, the district preferred the game of hardball instead.  When I say hardball, I'm saying the district threw every obstacle and delay tactic in my path.  Being soft in other words, didn't get what I need educationally for my child.  I accepted the challenge willingly and got to work.  When delays were thrown in my way, I used the time to learn more.  I reached out to people more knowledgeable than me about education law.  Listening to other parents hearing their own personal experiences gave me courage.  And, I refused to take the line of least resistance by yanking my kid out and homeschooling him.  That approach would've been inappropriate on many levels.  It also takes the heat off the schools to do what taxpayers expect and that's educating our children, all children as according to their individual needs.  Each time I got knocked back, I recouped and started again.  I got excellent at writing letters and documenting everything.  I have one very long file drawer filled with documentation related to everything about my son,  his school, diagnosis, tests, evaluations, homework assignments, copies of email correspondence and anything I think might be of use in the future if needed.  I also have backup soft copies just in case.  It is an arsenal to protect the education rights of my child.  These documents are like gold to me.  It is a trail of information about my son and it is all priceless.  It has helped me in my advocacy work because without solid documentation, I have no foundation to support my efforts.

Until the laws change that put more pressure on districts to appropriately and adequately educate each and every child according to their abilities and needs, parents must put themselves in the trenches doing the ground work.  Parents can't sit back and expect someone else to take care of it for them.  That attitude will not ensure the needs of the child is served.  Truth be told, no one knows a child better than the parents.  School districts need to have more pressure placed upon them to earnestly collaborate with parents to arrive at educational solutions that serve the student according to his/her needs.


Advocacy work takes a lot of energy and commitment of time. Our children are worth it.  Parents can find solace by connecting with other parents through support groups, parents of children with educational needs at school, PTA and organizations such as Parent to Parent of NYS.   Sharing information and coming together for a common cause is the key to success.  Resources can be found in the sidebar of this blog.

It is not over. It is a new beginning for my son.  I hope my efforts in some small way will help other children as well.  The more parents become knowledgeable about the law and how to appropriately advocate for their children, the less districts will be able to short change our kids by cutting corners.  Parents and educators need to be well versed in special education laws and regulations.  People need to step up and do the right thing.  If we remove the ignorance, we're able to lift obstacles, barriers to judiciously educate children with learning disabilities.  The excuse often heard by parents "we don't see it", will be moot through the power of knowledge and the ability to collaborate for the common good and entitlement for all students.

For The Record

Character is doing the right thing when nobody's looking.  There are too many people who think that the only thing that's right is to get by, and the only thing that's wrong is to get caught.  ~ J.C. Watts ~

I attended my daughter’s moving up ceremony and surprised at not seeing my neighbor’s son.  My daughter and the boy were in the same grade and his name appeared in the program.  The boy was the only one in the 8th grade class to miss it.  Shortly thereafter, I learned from the boy’s stepmom why he was absent.  The boy decided he didn’t want to take part in the ceremony  because he will attend a different school district in the fall.  He will also repeat the 8th grade.  I was told the new school district assessed that the boy made no gains in Webutuck and therefore is required to repeat the grade.

During a CSE meeting, the boys parents were told by the Chair it’s best if they removed the boy because if he remains he would have a “bulls eye” on his back by the teachers.  A bulls eye!  I couldn’t believe what I was  hearing although knowing the arrogance of the CSE Chair, it is not all that surprising, really.   Basically, the district has failed the boy.  Instead of focusing on solutions and appropriate interventions to help the boy, the Chair tells the parents to place  him elsewhere.  How does a district Chair have the audacity to tell parents to place their child elsewhere and get away with it.  In doing so, the district is denying the child a FAPE.  I asked the step mom if they recorded the meeting or have a witness to what was said.   Although I think given the seriousness of such a suggestion is enough to report it directly to the NYSED without a record.  A record is undeniable proof, however.

The above situation was shared with my Partners in Policymaking members.  Many of them agreed that what the Chair did was deplorable.  In fact, one person went on to say, with proof, it’s probably enough to have the boy placed in a private school at district expense.  I agree.

I want to give parents permission to record meetings.  Give yourselves permission – it’s ok, legal and a way to protect and ensure your rights are upheld.  Or, invite someone who can take notes and witness what takes place in the CSE meeting.  Parents have a right under the law to invite anyone to the CSE meetings so long as 72 hours advance written notice is given to the district.  Additionally, by law, with prior written notice, it is permissible to capture a record of the proceedings.  It is important that parents are proactively involved in holding districts accountable.   Each time we take a stand for our children we are indirectly standing up for all children in special education.

NYS Board of Regents - Teacher and Principal Accountability

BOR Teacher Accountability

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 ~

Useful Advocacy Tool For Iphone, Ipad Users

"Humanism believes that the individual attains the good life by harmoniously combining personal satisfactions and continuous self-development with significant work and other activities that contribute to the welfare of the community."   ~  Corliss Lamont ~

In navigating the public school special education system. parents often find themselves up against huge barriers working through the heavily laden bureaucracy.  More often than not, parents are left feeling confused and helpless as they attempt to come to grips with their child's disability and an appropriate education as defined by state and federal laws.  School districts by and large often add to the stress level by not working in cooperation with parents to appropriately educating children with special needs as defined by law.

It is no surprise to me that a thoughtful educator has come up with an app with parents in mind.  In response to the countless parents running into brick walls with school districts, the use of new technology in the iPhone and iPad devices help parents have useful  resources within easy reach. The latest technology gives parents a tool readily available at their finger tips with an app created by Syracuse University School of Education professor Alan Foley. It is called the iAdvocate and it's free through iTunes. Basically, the application provides strategic information and resources to engage and empower parents by helping them be aware of their legal rights in getting a free and appropriate education for their children.

Foley who is the associate professor in the Department of Instructional Design, Development and Evaluation (IDDE) hopes the app will serve to enable parents to work in a collaborative effort with school professionals toward positive resolutions in educating children.  In essence, Foley hopes the use of the app will help to improve services and access for children by providing needed support for parents.

I use a Blackberry and have no immediate plan to switch to the iPhone.  I hope an app will be made for it in the near future.

My Child Is Not The Poster Child For Autism...

... he is however, a child on the autism spectrum.

My school district refuses to acknowledge my son is a child on the spectrum. The school psychologist disputes the findings in the evaluation I obtained through the NYU Child Study Center, NYC. She states, my son doesn't show the social aspect for him to truly have "autism" as it's defined under Autism DSM 299.0. She has only an MA and challenges the findings conducted by experts with Ph.D's in the field of autism spectrum disorders.

To meet the challenges of appropriately educating my son, it requires more resources they do not presently have but will not say it's the reason. However, it doesn't change the fact that my child is in need as the children are in the video.

We have a significant problem in the U.S. school system that fails to not make available these resources for every child in need. The laws state we must provide but the requirements to meet the challange are elusive in many school districts. What does it say about our public education that a parent must be fortunate enough to win a lottery with odds stacked against them so their child can have the appropriate education he needs and deserves.

Watch the full episode. See more PBS NewsHour.

Resolution

 

Resolution:  : the act or process of resolving: as a : the act of analyzing a complex notion into simpler ones b : the act of answering : solving c : the act of determining

I have a resolution meeting in response to the due process complaint.  It is the step taken by the school district after a parent files for due process.  The definition stated above is there because I want to be absolutely clear of it’s meaning.  That might seem a bit curious to some but I have good reasons for needing this confirmation.  There are a number of large issues on the table and a resolution meeting by it’s expressed intention is to have both parties on opposing sides work out their differences.  Although I’m trying to remain open minded and optimistic it is a challenge.  And, the reason for the flagging optimism is simply because the CSE Chair has gone out of their way to make it extra challenging for me to resolve the concerns I have regarding my son’s education.

It was only yesterday that I learned the school psychologist reneged on her offer to provide the report from the recent Connors 3 and Brief my husband and I so dutifully completed and returned in an expedient manner.  Originally, the SP gave me the choice of either A)  go over the report in person on the day and prior to the resolution meeting, or B)  she would send it to me.   I opted for ‘B’ only to be disappointed that we would not receive the report prior to the meeting.   It is like the Peanuts character, Lucy pulling the football out from Charlie Brown just as he is about to kick it.  Charlie would always fall flat on his back.  Do I need to say how dysfunctional it is.  Adults who are responsible for educating children create obstacles for parents which directly and adversely impacts the education of the child.  Just consider it as this is what I have been up against.  Unfortunately, these prevailing attitudes and the game playing at the expense of children are an all too common thread.  The objective for the school district is to win while the (parent) child loses.  In reality, I’m not trying to win.  I am seeking an appropriate education for my child and ultimately if I’m not successful because the school district refuses to assist in the effort, it is my child who loses – not me!

We are trying to work out solutions and in partnership with the district regarding a child who has learning challenges associated with his disability.  However, that requires cooperation and collaboration which has been in short supply from the school district as the example expressed above.  Do I have to tell you how tired I feel.  And, the disillusionment by this whole entire system who’s “intended” purpose is to protect children with special needs.  To add in is a little known piece about not being allowed to record the meeting.  I have looked at the NYS special education part 200 regulations but unable to find anywhere in it that recording of resolution meetings is expressly prohibited.  If you find it, please shine a light on it.

A large part of the aforementioned challenges is a lack of accountability and absolute limits imposed on school districts.  There is little to no oversight and by virtue of the way the system is set up, school districts have way too much leeway to circumvent it.  They will  intentionally drag proceedings out because there are no time limits set to resolve conflicting opinions.  And, the timeframes stated in some instances in the law are shrugged off by school districts.  There is no established standard of best practices only laws on the books that require minimally for parents to have a background in paralegal studies.    It is not an exaggeration when I say we need experience in research.  That is not a luxury many parents can afford for so many reasons.  As a result, way too many children will ultimately fall through the cracks because their caregivers didn’t have the resolve to change it because the task to do so is daunting.  And, because the system the way it’s designed is a wide path with a narrow door.

As I reflect back on what has brought me to this point and with every obstacle thrown my way, I approach the upcoming resolution meeting with a certain amount of trepidation; as another exercise in wasting precious time my child cannot afford.   I hope this outlook is wrong.  I hope for my son’s sake the willingness by the school district to work out our issues are sincere and will be the driving force.

 

“I am persuaded, that if any attempt is made to improve the education of the poor, and such an unmanly spirit should guide the resolution of a society or committee for that purpose, it would render the design abortive.”  ~ Joseph Lancaster ~

Take Action

Children are the most vulnerable when adults have disputes.  They are often caught up in the middle.  When school districts resist to resolve parental concerns, it negatively impacts the children and their education.  There needs to be steps and procedures to ensure timely resolution so the impact on our children’s education is lessened.  We need to remove the stumbling blocks and one of the largest to overcome is finances.  Parents cannot be effective advocates for their children if they do not have the financial resources for attorneys and expert witnesses.  Money should not be an issue to ensure a FAPE – free and appropriate education.

I have been working for the past two years trying to resolve issues with my school district.  It is an extremely vulnerable time for my son developmentally.  As a result, many opportunities have been lost.  My son is at risk of failing due to the resistance of the school district to resolve disputes in a timely manner.  This is wrong on so many levels.  This needs to change for all children

We need to do more to protect children with disabilities and their parents/caregivers.   Parents should not be concerned with how they will afford the fees for expert witnesses in due process proceedings.  In fact, I advocate that parents who seek due process should not have any out of pocket expenses.  There needs a system in place where school districts are put on notice whereby parents follow a step of procedures to work out issues prior to filing for due process.  After exhausting those measures in a short timeframe of 6 months, the parents can proceed to file for due process at no expense.  An attorney should be provided by legal services at no expense regardless of income.  The only expense would be if the parents hired an attorney privately which should be an option but not a requirement.  It will put more pressure on school districts to work with parents to resolve issues in a timely manner.

Below are links to a survey regarding IDEA.  Please take a few minutes to respond and pass it on to all concerned persons.  We are all impacted as a society when children are not appropriately prepared for life beyond school.  Education is the key for our children to lead independent and successful lives.

HELP ADVOCATE FOR RIGHTS UNDER THE INDIVDUALS WITH DISABILITIES EDUCATION ACT (IDEA) HELP ADVOCATE FOR RIGHTS UNDER THE More Info INDIVDUALS WITH DISABILITIES EDUCATION ACT (IDEA)   How: 1. Complete the IDEA Survey 2. Get co-sponsors for the IDEA Fairness Restoration Act (permits expert witness fee reimbursement) ----- 1. IDEA Survey Action Please participate in the IDEA National Survey Project, a survey which examines whether the rights of parents and children with disabilities in special education are protected.  Go to http://www.ideasurvey.org to take the survey or for more information. You can also visit the project on Facebook, http://www.facebook.com/IDEA.Survey and Twitter, https://twitter.com/#!/IDEASurvey .  The deadline for completing the survey is June 14, 2011. Background The survey project is sponsored by the National Down Syndrome Society, National Center for Learning Disabilities, Autism Society of America, Autism National Committee, and The Advocacy Institute. The survey examines whether the playing field is level for children with disabilities and their parents, and whether parents are treated as equal partners in their children’s education. A report will be compiled from the responses. There are a few choices of surveys, each appropriate for different groups: parents of children with disabilities; self-advocates (a long and short version); and attorneys, advocates, and other professionals.  2. IDEA Fairness Restoration Act Action In early May there will be a call-in day to get co-sponsors for the IDEA Fairness Restoration Act (S. 613 in the Senate; H.R. 1208 in the House). You can find the name of your elected officials and contact information at http://capwiz.com/ndss/dbq/officials/?command=local. We will send out another action alert once the call-in date has been selected. If you are in contact with your Representative and/or Senators before the call-in date, please ask them to co-sponsor this bill. They will be back in your state for Spring Recess from April 18-29. Background On March 17, 2011, federal legislation was introduced to allow parents to recover expert witness fees in due process hearings and litigation under the IDEA.  The IDEA Fairness Restoration Act was  introduced in the Senate by Senator Tom Harkin (D-IA), Chair of the Senate Health Education Labor and Pensions Committee; Senator Barbara Mikulski (D-MD), and Senator Bernie Sanders (I-VT); and introduced in the House of Representatives (H.R. 1208) by Congressmen Chris Van Hollen (D-MD) and Pete Sessions (R-TX). When schools fail to meet their legal obligations under the IDEA, parents may seek an impartial hearing. Parents need expert witnesses for these hearings, especially in states where they have the burden of proof.  Expert witnesses can include psychologists; pediatricians and other physicians; therapists; educational, inclusion, or positive behavioral support experts, and others.  Their testimony ensures that children with disabilities get the educational programs, accommodations, and supports they need. In 2006, the Supreme Court held in Arlington Central School District v. Murphy that parents could not recover their expert witness fees under the IDEA even if the case is decided in their favor.  Many parents cannot afford to shoulder this expense. Therefore, they are unable to defend their child’s educational rights.  The IDEA Fairness Restoration Act will override the Murphy decision.  It will enable parents who prevail in due process hearings and litigation to recover their expert witness fees.

Off Topic With A Touch of Relevancy

Compared to parents of the children my kids go to school with, I’m of a different generation.  I started my family late; in my 40’s.  I grew up in the 60’s.  On average, I’m older by at least 20 years.   It’s ok – go ahead and do the math.  I will not feel insulted.  I wear my age like a badge and proud of it.  However, I often feel my sensibilities and values regarding child rearing is an anomaly.  I try to hold on to my children’s innocence for as long as possible by shielding them from inappropriate, explicit media that kids today are constantly assaulted with.  I’m appalled when kids the same ages as my own are allowed to view programs way above their age level.

I came across an article about children in the D.C. area found to be using cocaine.  The article didn’t point out the children’s ages but I presume elementary.  When I express concern to administrators in my daughter’s middle school that I consider it inappropriate the health teacher asks students with exuberance if they caught the last episode of Skins or Jersey Shore, and do not receive acknowledgement they share in my concern, I feel like a person in a very strange land.   So when I came upon this article for a brief moment, I felt vindicated.  Vindicated that I’m not as alone as thought in my sensibilities on wanting my children to be just what they are and enjoy the innocence for as long as possible.  I felt even better imagining the author of the article by description is a young person who appreciates good old fashion values.  And, is equally troubled by the wide spread disregard for childhood innocence and how important it truly is.

In case you missed the report, here it is:

news

Elementary School Kids Caught Using Cocaine

By Chris Nester Friday, March 18, 2011

As a child’s innocence becomes a value of generations past, I can only hope that news like this, when brought into the spotlight, forces parents everywhere to take a look into the mirror.

Four D.C. elementary students were taken to a hospital on Wednesday after they ingested cocaine. According to ABC News, they’re all in stable condition, and the student who brought the drug to school is being charged with possession of a controlled substance.

Amidst our culture of cluttered internet media, including YouTube videos, blogs and tabloid news, this story will probably soon be forgotten. But I hope not.

I hope this story wakes people up. I hope it brings tears to the eyes of parents, not just in Washing D.C., but all across our nation as they realize the truly broken state of our society. Family values of old become more of an anomaly everyday, and in our self-focused, incentive-driven culture, there seems to be less and less time to take care of our own children. Where did an elementary student get cocaine? They probably stole it from a parent or an older sibling. How did a group of children even have the idea to use the drug and know how to do it? Again, whether it was from watching a family member, sneaking out of bed and catching a babysitter doing it, or just seeing it on TV, it all falls back onto the parents’ shoulders.

The school where the incident occurred, Thompson Elementary, has a reputation for academic excellence and was even recommended to President Obama for his daughters when they moved to the nation’s capital. So how, even at such a widely respected school, does something like this happen?

There’s still a lot of details pending with this story. The students’ ages and names have not been released, and I’m sure that if it was a parent’s cocaine the kid stole and brought to school, they’re already negotiating a price to keep things quiet. Ultimately, this is just another sad revelation of how our kids continue to lose their innocence terrifyingly young, and often times in situations that should and could be easily avoided. I am not a parent, and I do not plan on being one for a very long time. But to all of you who are and who are thinking about parenthood, please take your parental duties seriously. Be better than you ever thought you could be. Pay attention to your children and please, don’t make an innocent kid suffer for your own mistakes.

It’s Business, It’s Not Personal…or is it?

“I am in earnest--I will not equivocate--I will not excuse--I will not retreat a single inch and I will be heard.”   ~ William Lloyd Garrison ~

I took a political science course in college and one of the things my professor told me was that my determination will take me places.  When it comes to justice vs. injustice, I don’t back away easily.  I’m tenacious and yes, very determined.  I’ve always had a weakness for the underdog.  My son is an underdog.  I think children in special education are underdogs especially in the public school system.

When parents challenge the opinions of the school on the appropriate approach to educating their child, it is not personal.  It is not personal to go after the institution responsible for making important decisions that ultimately shape our children.  Parents are very important members of the IEP team.   Their opinions, thoughts and concerns need to be heard and taken seriously.  It is all too often that school districts bully parents into submission because they don’t want to add resources.  Districts akin to warlords have no mercy for the ignorance of parent knowledge of the special education school system.  In fact, they feed on it like piranha wearing us down with every bite.  It is unacceptable that only the most determined, savvy parent with the deepest pockets and resources are able to get an appropriate educational prescription for their child.  I am determined but do not have deep pockets.  My financial resources are limited.  I don’t have a great deal of disposable income.  My husband and I make financial sacrifices to have our child tested appropriately and thoroughly.  In effect, it is only personal for us because we care about the welfare of our child. 

It has taken three years to reach the place where I am today challenging how my child will be taught and how his needs will be met.  Aren is in 3rd grade and is no better equipped to enter the 4th grade than he was entering the 2nd and 3rd grades.  He is behind and it is unacceptable.  The special education teacher decided long ago, my son wouldn’t make the grade.  In my mind, she gave up on him before he left the gate.  This is the same special education teacher he has had since kindergarten.

There has been a shift in attitude and I have a theory about this which I’ll get to later in this post.  Yesterday at a parent-teacher conference, the special education and the general education teachers told me and my husband they don’t know what to do.  It is the first time ever we heard these words.  They also said (for the first time), presently Aren is not well equipped to take the upcoming state exam.  I only voiced this concern at the end of 1st grade and it fell on deaf ears.  Keep in mind these are the same people who in so many ways suggested they know what my child needs.  Previously, they were only too quick to dismiss our concerns and compare our child to non-disable children his age as age appropriate behaviors.  We  told them, we need to consider other placements for Aren.  We have been telling them this since the end of 1st grade. 

Our dream and goal for Aren is to take regents exams and graduate H.S. with a general education diploma not an I.E.P. diploma.  In  order for that to happen, Aren requires more resources.  It can happen, in an appropriate setting that has the resources to meet Aren’s individual needs.  Aren is high functioning so finding a suitable placement is a challenge.  But I am determined.  I will not give up trying.  The district needs to be willing and allow us to have referrals to other schools.  Or, they need to change their approach in how they’re educating Aren.  These are the only options and the former is the more desirable because the current classroom setting is too large with a total population of 20 students.  It is too large for Aren.  Further, he requires additional assistance.  Aren needs a person to help him stay on task because he is easily distracted due to ADD.  My husband and I are not quick to medicate our son.  This is the quick fix and ultimately we don’t know how that will play out in his developing body.  I’m not eager to put my child on a stimulate.  All I hear from the districts are suggestions that would make their lives easier.  Their needs are above my son.  I must sacrifice again and again and again, plus gamble on my son’s health.  This is my opinion and it matters.  It matters because Aren is my son and my husband and I are here for the duration while teachers are transient figures in my child’s life.  However, understand transient doesn’t mean less of an impact for better or worse on our children only temporary.  In this regard, I have a much longer view and investment on my son’s life and the path I’m trying to map out for him.

To no avail and no small measure, I’ve been trying to work out an education plan with the district.  I’ve taken all the appropriate steps by making appeal after appeal to get our concerns resolved for Aren’s sake.  They have dragged things out, dismissed our concerns and in every manner of speaking have suggested they know what’s best for my son – not me or the professionals at the NYU Child Study Center.   They made claims that they could meet my son’s needs yet he is not working at grade level.  They threw stumbling blocks in our path to getting an appropriate education and now the general education teacher is wondering why Aren is less attentive.  He has always had attention issues.  The bigger problem is that Aren is much more aware and is measuring his success against his peers.  Aren doesn’t want to appear “slow” so he rushes through his work and leaves a trail of mistakes.  He fools around in class and needs constant reminders to attend to the work.   It is arrogance and the need to consider the bottom line that drives their position and decisions that are detrimental to my son’s education.   Their decisions are not based on the law or the evidence in front of their eyes.  This attitude is not good for any child with special educational needs.

After months of consultation with an attorney, a due process complaint was filed with the district this past Tuesday.  In this very small school district, we got the idea the word spread very quickly.  We think this is the reason for the attitude shift we met up with yesterday.   In previous meetings, the reception was icy and very resistant to our concerns and suggestions for Aren.  Parents who heavily advocate for their children are often not met with a “red carpet”.  We are movers and shakers and districts tend to not like it very much.  In the words of the comedian, Lewis Black, “it makes them cry”.  If we only could have worked out our differences two years ago, I don’t think I would be writing this blog.  Things would have been a lot different.  Reaching this point of filing a due processing complaint is not as a result of my lack of trying to arrive at a mutually agreeable education plan for Aren.  It was filed because the district refused to meet us half way.  I didn’t want this, in fact, I tried to avoid it.  I don’t want an adversarial relationship with the district but I will not roll over and show my belly either!  My son has rights under the law.  All persons with disabilities have rights under the law.  If a school district refuses to see to reason, what other recourse outside of directly pulling our child out of school have?  Pulling my child out isn’t an option.  The burden shouldn’t fall on the parents shoulders.  We have already been through enough.  School districts need to step up to the plate and do the right thing – appropriately educate our children and be willing to try different things to meet the individual educational needs of each child. 

Taking a Long View

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”   ~ Margaret Mead ~

I got into a little discussion with a friend of mine on Facebook.   I have known my friend for quite a while.  In fact, our friendship came about as a result our husbands are very good friends and colleagues.  One of the outstanding things we have in common is that we both have son’s around the same age who have an ASD – Autism Spectrum Disorder.  Basically, I responded to the video shown on my previous post that my friend placed on her page.  There is so much truth in the video, so much so, that to me, it lacks humor.  I know not every parent with a child with special needs is faced with the extreme example shown in the video but it not far off the mark for many parents.  I’ve been having similar exchanges since my son was a tot.

One of the things my friend mentioned is the amount of money she spent on having her son evaluated by numerous professionals and paying for a special education advocate.  She indicated an out of pocket sum totaling $1,000,000.00!  Exaggerated?  I think so; (I hope so)  I believe she clarified it in a subsequent post.   I don’t think anyone should exaggerate or make folly of the amount of money that is often required of parents to gain the attention of special education directors.  It is appalling to me that parents with resources tend to get the most appropriate services for their children.  It speaks volumes about how we approach educating children with special needs.  Those with the deepest pockets and resources gain the most for their children in public education.  Heck!  If I had a $1,000,000.00 my child(ren) would be in a private school with the best Para-professionals and educators money could buy.  However, that doesn’t address the bigger problem when it comes to special education in public schools.  It only shows that those who can afford it will get the most attention for their kids.

On the other side of the coin, getting thorough and expensive evaluations do not guarantee our children will be any better off.  Parents must work through the system and get the CSE team on board with the findings and sometimes it is not that easy.  Sometimes and perhaps more often then I’m aware, parents must go to due process.  Would it not be better to take the money school districts spend on due process legal fees, etc., and apply those funds to properly evaluating children and providing the needed services?  Would it not make better money sense as we’re investing in educating our children?  Every time, we go to CSE meetings to hash out our concerns and differences, teachers are pulled away from the classroom where they are needed the most.  That is a waste of time, money and limited resources.

My grievance is that parents are often forced to go into debt to get the evaluations so they can prove to the districts their child is in need.  This is completely wrong in my mind.  The burden should be on schools to have our children properly evaluated and provide the necessary services for each child to have the chance to succeed.  For example, If a parent receives a diagnosis of PDD-NOS from a developmental pediatrician  that should be good enough for districts to provide appropriate testing and evaluations to determine the educational need.  This is what I advocate for.  When I voice concerns for my child in effect, I’m adding a voice for all children in similar circumstances.

So I say, do not be complacent or celebrate our individual success at getting our kids needs met.  It’s important to push for change so all children are served appropriately in public schools.  If you have the financial resources to pay for appropriate evaluations, don’t stop there.  Be appalled that you had no other recourse but to pay big bucks and speak out against it for the sake of all children.  Don’t think it “doesn’t impact me” if the parents of Johnny who sits next to our kid in school can’t afford evaluations and is drifting through school as a result.  It impacts all of us because this is a societal problem; not an individual problem.