What Happens When Part of the Solution Becomes Part of the Problem?

Since my last entry on this blog, I’ve run into all kinds of “situations”.  At the last full CSE meeting on Nov 4th, a concession was reached that my son would receive the benefit of the O/T being trained in Handwriting Without Tears.   I was told training would “likely” take place in the early part of the New Year.   In addition, my son is prescribed weekly O/T at the total rate of 120 minutes per week.  This is broken down to, two 30 minute sessions and one, 20 minute session.  As a result, my son sees the O/T three times each week.  Why is this?  According to the O/T, she is contracted for only 30 minute sessions – not 40.   I requested to have the HWT training written into my son’s IEP and the chair refused stating it is not a requirement.  Really?  At this writing, I don’t know exactly when the O/T will be officially trained and applying it in my son’s program.  A side note, I was advised by legal counsel to request the training written into the IEP.  Later on, I will have more to write on my recent experiences with legal advice and things related.

Below is a sample of my son’s writing from a recent homework assignment.  I wrote in his name and the date at the top of the page.  I do this for him everyday and as a way for me to keep track of my son’s day to day progress.  Just to let you know, my son continues to have difficulty writing the date in the proper format.  He is in the 3rd grade.

Basically, he had to divide 3 columns and show one, two and three syllable words in each.  He is making some progress  but he still  hasn’t mastered the concept.   The above sample is a typical example of my son’s homework. I’m often told, he does much better at school.  It’s troubling to hear my son performs well at school yet can’t demonstrate the same level of ability at home.  If this is the case and the district sees no problem with it, they need to be on notice that this does NOT demonstrate they’re preparing Aren for further education as defined under IDEA.  If my child can’t successfully show ability outside of a controlled classroom environment, one can infer the lesson has not been well learned and/or taught.  This is a big problem that will only get worse as my son progresses in school  if not corrected

Although I got the accommodation it comes at no small price.  Aren misses out on time otherwise spent on academics as according to the district chair.  In earnest, I tried to remedy this problem by requesting my son receive an extended day.  Aren continues to struggle in math and needs support and tutoring in this area.  At first, I was given the stock answer, “we don’t do that”.  And, “we don’t have resources to provide an extended day”.   I pushed back by restating “the district will not make the accommodation”.  I was recording the meeting as every parent should have an audio record.  Finally, the chair offered to provide before school tutoring but not after school.  The reason:  “we don’t have teachers for after school.”  So, I’m to accept teachers are only available in the morning prior to the start of the regular day but not after it.  Hmmmm.  Is this because it’s in the district’s best interest and not my son?   A before school program would require my 8 year old son to wake an hour earlier to ride the bus with the middle and high school students.  This would be sort of okay if I didn’t care that my child would get less sleep and be exposed to poor models.  For example, teenagers discussing in graphic detail their sexual exploits and the “educated” application of condoms.  Only recently, Aren told me, a H.S. student who had to ride the afternoon elementary school bus proceeded to walk on the bus and blurted out, “these fucking little kids”.  (I will not censor my words but tell it just like it is.)  Of course, I expressed my concern to the H.S. principal and the superintendent about the incident.  In giving the district credit for their swift response to my concern, the H.S. student in question was disciplined for his behavior by being banned from the buses for approximately 2 weeks.  I learned this from my children – not the district.

The other piece from the December 8th homework assignment was 2 digit subtraction.   Aren continues to struggle with math.  He has difficulty with abstract concepts due to his disability.  Here is how my son responded to his homework assignment:

You can see I wrote a note asking who is helping Aren with math.  I’ve yet to receive a response.  Maybe it will come home today.  Time will tell.

I want my readers to know upon receipt of the recently revised IEP, the district unilaterally removed PDD-NOS under the alerts section.  This appears to come about after I requested that Autism be placed in alerts.  Although I have compelling physician reports, this district refuses to acknowledge my son is on the spectrum.  They have decided to make their own diagnosis and completely disregard all the documents put forth to them.   I made the request for the Autism alert after receiving legal counsel.

I know I keep alluding to feedback from a lawyer.  I have in fact, taken my concerns to an attorney.  That will have to be for another post.  I keep hoping things will turn around but how long can I wait for my son’s sake?  Aren knows he is struggling.  He told me last week he doesn’t feel good about it.  It is heartbreaking.  My efforts are met with huge boulders in my path to getting his educational needs appropriately met in this district.  And, it comes from all sides not just one.

What do I do?  Do I accept what the special education teacher insists that my son is “slow to learn?”  Would you accept it?  The school psychologist back in June and right up to the October 6th meeting wanted to classify my son as MR although he isn’t.  There are no physician examinations, tests or reports that conclusively confirm an MR diagnosis.  An MR classification only serves to justify the district’s point of view, agenda and nothing more.   If they label my son as MR and therefore slow to learn, it’s basically Aren’s fault – a blame the victim mentality.   It in effect relieves the district of putting more effort and resources into my son’s education so that he is minimally working at the same level as his non-disabled peers.  The district seems content that my son is working a year plus behind his non-disabled peers.   I do have however, many documents that show a diagnosis of a child that is on the Autism spectrum.  Copies of these documents are in the school records.

Finally,  the district backed off of MR and are satisfied maintaining OHI – Other Health Impaired yet doctors have asserted it doesn’t accurately define my son’s disability.  I believe the OHI classification aids the district by relieving expectations and accountability.  It’s a bit of a quagmire don’t you think?  It seems I have only two choices:  acceptance or due process.

“It is easy to dodge our responsibilities, but we cannot dodge the consequences of dodging our responsibilities.”  ~ Sir Josiah Stamp ~

NYS Regents - Autism 200 Regulations

I'm on many autism lists to keep up to date on Autism related news and information.  Today, the following article landed in my email.  If I haven't felt shitty enough lately about the ongong problems with the school district, this news rubs salt into an open wound.  What are the powers that be trying to do to our kids and parents who fight so hard to advocate for them:


Despite acknowledging hundreds of phone calls and emails and dozens of letters of opposition from various organizations from our community, the Regents voted the article 200 regulations into extinction - some actually chuckled while doing so. These regulations offered at least some protections for our children for speech services and class size and gave parents at least some degree of support in CSE meetings.

These regulations are now gone, dismissed with a wave of Regent Chancellor Tisch's hands.

The disdain was not universal; Some - like Chancellor Emeritus Bennett - expressed concern stating "I am very concerned that we are reducing services...I also fear that we are upsetting the balance of the relationship between parents and CSE chairs.  Regent Chapey - who has a back ground in speech, language and hearing - also stated openly that there was no research that supported reducing speech services to those with autism.  Further, Regent Cofield stated "There is distrust - We are not dealing with the distrust that people feel in the CSE process."

Some Regents like Nassau's Talis and Westchester's Phillips voiced support for the changes saying districts would take care of the families and would not cut services.
But, in the end, the Regents voted unanimously to cut speech services. Then some basically said that parents could use due process and "handle it that way." One Regent indicated that children with autism use up all the services leaving nothing for other children.

In the end, Chancellor Tisch simply stated that districts need flexibility. They voted with her. Chancellor Tisch and the Regents have green lighted school districts to cut speech to people who - in some instances - can't talk. Our children were not viewed as children with needs; they were viewed as "unfunded mandates."

I spoke to a few of the Regents - Chancellor Emeritus Bennett for a few minutes. He suggested that he was open to establishing a committee to focus on autism and connected me to an outraged member of NYSUT. My conversation with Mr. Phillips was not pleasant. I told Harry that he just did the wrong thing and he has no idea how badly he and the Regents have hurt families with autism.

Mike Smith and I spoke to the Albany Press. Later in the day, I spoke with a reporter from Newsday.

All of us who have had struggles with our children's CSEs know what is now going to happen. In this budget environment, it will likely mean the elimination of most speech services and stretching autism class rooms to the max - risking the safety of our children.

The New York State Education Department has walked away from our children. It is time to fight back.

I ask all of you to put this out on your lists and let our community throughout the state know what has happened here.

More to come.

Louis Conte
Autism Action Network
EBCALA

Is It Too Much To Ask?

Placate defined:  to pacify or appease

Advocating in special education requires parents to take copious notes, keep well documented records and follow up in letter form all interactions with the CSE chair.  There is an expression:  "if it wasn't written down, it was never said."  Writing letters to restate what was discussed at meetings is a way to hold people accountable.  It's very important school districts know parents are paying close attention and educating themselves.  It is exhausting and laborious work.  This is not to suggest that districts will not try to get away with as much as possible or sidestep the law because based on the experiences of many, it is a fairly common practice.  When I talk to other parents, similar struggles are echoed.  Parents break down emotionally and feel their concerns are discounted.  It is a very sad thing but it doesn't have to be hopeless so long as parents can bounce back up after each time they get knocked on their butts.

I live in NYS and can speak only to my special education experiences here.  I welcome comments from parents, professionals and teachers regarding their experience whether it be in NYS or elsewhere.  The education of children impacts the future regardless of where they reside.  I would love to read about systems that work and why.  It is also helpful to share information about resources used in public schools that addresses individual student needs.  Clearly, the system here is far from perfect.  Although the state and federal laws are clear about educating children to further their education, it appears parents continue to be in the position of fighting tooth and nail for appropriate accommodations.  And, if it's crystal clear to parents the district is deliberately being difficult and capitalizing at every turn on their naivety and/or lack of education, the burden remains on parents to prove it.  The idea of this is extremely troubling because many parents who send their children to public schools often do not have the financial resources to hire talented legal counsel.  The school districts will try to use it to their advantage.  Consider how dysfunctional that truly is in fact, it's downright sinister.  We have laws in place in protect the rights of children with special needs.  By law, public schools are expected to provide a FAPE to all students.   School districts will make every attempt of providing as little as possible if they can get away with it.  Further, the district will not positively assist parents to find an appropriate program that meets a child's needs.  In other words, if it has been demonstrated or recommended by a neuro-psychologist that a particular program such as Cloud 9 math is effective at helping a learning disabled child grasp math concepts.  The district will not only make every effort to veto the suggestion, worse still, they will not suggest it.  This overall lack of participation by the districts in not working with parents to educate children is absolutely astonishing.

Statute of limitations. Parents now have two years in which to exercise their due process rights after they knew or should have known that an IDEA violation has occurred. The interpretation of the language "should have known" will be critical.

I want to start by saying, I've been actively advocating for a change to my son's program since 2009.  It was clear to me as Aren was approaching the end of 1st grade, he was working below grade level.  I requested and received a referral to BOCES Salt Point when my son was entering the 2nd grade.  He was approved for the placement but the CSE Chair reneged on it reassuring me the district could meet my son's needs.  My son is now in 3rd grade, continues to be behind his peers from 12 - 18 months and demonstrates deficits in core areas:  math, reading and writing.

Every night at dinner, it's a chance for my kids to discuss their day at school, etc.  Every night I ask Aren, who worked with you today and what did you do.  Aren has become accustomed to these inquires and without my asking last night, he said "I didn't work in a group today".  I asked him if the special education teacher worked with him and he said "no".  Well, then, who worked with you today, I asked?  Aren said, the general education teacher did.  My son is in a co-teaching classroom and it is on his IEP that he''ll receive co-teaching in math and reading daily.  Why didn't my son receive support from the special education teacher?  And, if it's a co-teaching accommodation, does this mean the special education teacher provides services to my son willy-nilly?

Willy-nilly defined:  unplanned, haphazard fashion'

I'm not being as sarcastic here with "willy-nilly" as I'm concerned about it.  Honestly, everything needs to be spelled out for parents so to avoid any misunderstandings.  My son has special needs that requires a special education teacher and therefore, I assume the teacher with the required educational background is available on a daily basis.  This is how I  understand it on his IEP.  Or, maybe I'm wrong, or misinformed.  In either case, I have a preconceived idea that minimally, the special education teacher should be working with my son daily.


 So you know from my last post, I attended a full CSE meeting.  And, I dutifully followed-up with a letter acknowledging what was discussed, agreed upon and outstanding items of concern.  We agreed on stepping up the O/T to three, 40 minute sessions.  Or, as stated by the O/T, it will be two, 30 minute sessions and one 20 minute session to arrive at a total of 120 minutes each week.  Why is it broken down this way?  The O/T states she is contracted for 30 minute sessions, not 40.


The CSE chair agreed to "look into" handwriting without tears which is a wonderful program that actually works for my son.  Handwriting without tears will require the district to provide training for the O/T.  I have no idea if/when it will be approved and how long it will take for the O/T to get up to speed on the program.  I didn't have a chance to ask it and the information wasn't offered.  The only thing said, it will take time to look into the program.


A side note about handwriting without tears - if I hadn't taken my son for an O/T evaluation this past summer, I'm not so sure I would know about this program.  Although, I might have learned about it eventually but who's to say.  I mention this because it's very important parents talk to other parents and do lots of research about the tools available to help children with learning disabilities.  Do not rely or expect school districts to fill the void.  A school district that makes recommendations for quality accommodations is a rare gem.  And, if that describes your school district count your blessings and tell us about it here.  I want to know what a model, special education program in a public school looks like because where I'm sitting, I have no idea.  Parents need to put more energy into demanding quality education for their children.  It is not charity, after all.  We fund it through our hard earned tax dollars.  Yet school districts have a talent for making us feel so small for asking for the most obvious accommodations for our children.  And, when we receive the hard won services, we're expected to be eternally grateful.  A-hem.


Do you think it's a good idea for elementary school children to rise an hour earlier to ride the bus with middle and H.S. students - just asking.


Yesterday, my 12 year old comes home from school and shares a lovely story with me.  She told me that she overheard a conversation between junior and/or senior level students discussing in great detail their sexual encounter over the past weekend.  The conversation included choice of contraceptive used (at least some part of the brain was engaged) and explicit content.


The CSE chair agreed to provide much needed math tutoring for my son.  We talked about 2 days a week which is a lot more then offered previously.  With the pull-outs for services, we're concerned Aren would miss much needed academics.  I suggested an extended day to help fill the gap.  There was some agreement with one small catch.  The principal thinks my 8 year old son should rise an hour earlier to ride the bus with the middle and senior level students.  In doing so, my young child will receive tutoring in the morning.  In addition, he'll be subjected to a premature sex education by teenagers.  Further, my son has some sleep related issues where he doesn't exactly springboard out of bed greeting the dawn of the new day.  In my letter, I expressed my concern in which case, the CSE chair suggests my son will need to fore go specials such as art and music.  I continue to advocate for an extended day where my son can remain after school for tutoring. 


What is wrong with an educational system where parents must dismember part of the education their child will not receive due to special needs.  Why are parents placed in the position to decide their child doesn't need art or music because he needs math.?  This is why it's called "special education".  Children who have special needs require accommodations so that they can receive the same level of education as non-disabled children.  It is not my child's fault he has challenges that requires extra attention.  What I'm expecting for him is an appropriate education so that he will learn which means accommodations.  Accommodations are not expecting or asking for the best education.  It's expecting an appropriate education as defined by law; to meet the educational and individual needs of each student to further their education.

Today, my son arrived home without homework.  He needs remedial work but doesn't have homework.  He told me that the general education teacher's policy is that if a child forgets their homework folder, the following day at recess, the child must write 10 times they will not forget their homework.  Is this a type of corporal punishment?  I remember a similar practice when I was child accept back then, it was 100 times on the blackboard.  My son has issues with short term memory processing.  I think there should be positive ways to teach a child to remember assignments without punishment.  If anyone has ideas for helping a child remember assignments, I would love to hear about it.

Tell me and I forget. Teach me and I remember. Involve me and I learn.   ~ Benjamin Franklin ~

Entering The OK Corral

"Courage is not the absence of fear, but rather the judgement that something else is more important than fear."  ~ Ambrose Redmoon ~

I have attended CSE meetings since my son was in special education pre-school.  It's always a nerve racking experience no matter how much preparation I do.  My stress level is way up but I try to use it to my advantage.   As always, I'm walking into a meeting heavily outnumbered.  When I attended the Education in Advocacy workshop to become a lay advocate, one thing mentioned is that there is usually one person on the school side who is a "friend" to your concern.  One person who sees not only with clarity, the challenges your child has but able to help identify with you possible solutions.  For me, it is not that easy.

The situation I have in this district is extremely challenging.  Although every parent who has a child with special needs must make it their personal mission to understand the laws to the best of their ability, it might not be enough.  Why is this?  As a parent, it's extremely challenging to separate the emotional investment we have in our children.  Unless the emotions are appropriately channeled, we're at risk of "losing it" at meetings.  Our judgement is at risk of being clouded by our emotions.  I try to offset this "disadvantage" by channeling the energy into educating myself and by aligning myself with as many other parents and professionals on the side of advocating for children.  It's a process.  Although I know a lot more now, have built up my confidence by educating myself, I need to monitor my emotions.  I force my logical and rational mind to drive at the meetings and keep things in perspective.  It is a challenge. 

This district has a agenda not to give one more resource without a fight.  It seems not to matter that their opposition to the obvious is hindering on breaking the law.  They appear to have little concern for it.  I know what I'm up against and although I have tried in numerous ways to work out my differences in a business like manner, it is not good enough.  As a result, I've made an appropriate attempt of leveling the playing field by arming myself with a special education advocate.  A person who is supposed to be on the side of children, who has a great amount of experience reciting the law and advocating for families.

What do you do when the advocate you're depending on, flips to the side of the district?  This is what happened to me.  The advocate I recruited read all the compelling information I have in defense of changing my son's classification from OHI to Autism.  In addition, the advocate was in agreement of seeking out of district referrals.  I thought I had someone who I could count on to help me navigate the shark infested district.  I want to say here, an out of district placement wouldn't be necessary if this district would provide the resources my child needs.  Further, it's a challenge where I live to find an appropriate placement for my child because he is high functioning.  Many of the schools in the surrounding area work with children who's disability tend to be moderate - severe. 

At the insistence of the district, my special education advocate was asked to observe my son in his classroom.  I was opposed to this but want to work with the district for my son's sake.  Unfortunately, often when adults are disputing over "things" where kids are involved, children tend to be negatively impacted the most.  With misgivings, I gave my "blessing" to the advocate with the promise from her that she'll remain objective.  Further, the advocate assured me her opinion wouldn't change; that the large file and documentation I've amassed substantiates the need for changes in classification and placement.

When you're getting ready to have company,what do most people do?  I know for me, I like things to be neat and tidy.  I feel good when my home is presentable.  It creates a welcoming environment for my guests so that they feel more comfortable.   Well, I can't imagine that any classroom teacher wouldn't want to present their environment in the best possible light.  That everything will be neatly arranged and prepared so as to demonstrate a positive and well managed classroom.  It's on the same level of bringing out your best china for your guests.  In fact, my advocate said to me that she's aware there is a tendency to "stage" in preparation for visits.  And, she is aware of this tactic and will not be phased by it because after all, we have compelling documentation.

As I stated above, my advocate flipped.  After spending one whole hour in the classroom, and seeing my son getting along so nicely, she decided he is appropriately placed.  I want you to know, the visit was set for 10:00 AM and it just so happens my child is at his best in the mornings.  The lessons/information presented during the visit where about things my son was very comfortable with.  In fact, it was material that my son worked on previously as demonstrated through his homework assignments.  How do I know this?  The advocate shared with me the things that were being discussed.  My advocate also told me how impressed she was with the book my son read to her.  However, when I asked her what grade/reading level the book was, she never answered my question.  I never found out what questions she asked the teachers about my child regarding tools used to help him learn, for instance.  Or, what areas are the most challenging for him and what ideas the teacher has for addressing it.  I never found out any of it.  In fact, I got the impression that all she did was sit, look and listen but not press for more relevant information.

Why am I telling you all of this?  After talking with my advocate, expressing my disappointment in her assessment, she assured me once again that when we go into the CSE meeting, the focus will be on classification change and necessary tools to meet my son's needs.  For instance, my son is behind 12 - 18 months on many academics including math.  We need to have a resource in place to help bring him up.  We agreed together, daily math tutoring is necessary.  It's clear my son's needs intensive remedial work in reading, writing and math - the three big ones.  If out of district placement is off the table, minimally, Aren's needs the additional resources in the present setting.

I had the CSE meeting on Thursday at 2:00 PM.  At around 9:00 AM, the secretary from my advocates office called to tell us, she was sick and not able to attend the meeting.  My advocate has my email address, in fact, we have corresponded often through it.  Do you think I received an email from my advocate with an apology for leaving me high and dry at what was considered to be a very important meeting?  Well, as I'm sure you have guessed, the resounding answer is a big, fat, "no".  In fact, I don't expect to hear from her again.

What I will tell you is that "yes", I went to the meeting with my husband and two children.  And, I stiffened my back, held my head high and indicated to the CSE chair, my advocate called in sick.  I remained undaunted because my son needs strong people to advocate for him.  I stated my case for my son.  I started by asking for the classification change from OHI to Autism.  It was refused because, a more suitable classification from the district's point of view is MR and that is based solely on an IQ score.  So, I guess I should feel comfortable with either OHI or MR.  Let me just say, that neither classification is suitable.  Those classifications do not speak to my son's disability, challenges and strengths.  My son is on the spectrum and his disability is probably best described as pervasive because he is splintered in his abilities.  I have in my possession documentation from several professionals that offer opinion that points in the same direction.  The school psychologist who was the first person to advocate for the MR change in June, argues that my son doesn't demonstrate the social challenges associated with many children who have autism.  I'm so sorry to disappoint the psychologist that my son doesn't present in a stereotypical way.  And, it's troubling that I, as a lay parent in regards to Aren's disability, is required to tell her to do more research in autism and that one size doesn't fit all.   That autism manifests differently and by varying degrees in children who have the diagnosis.  And, her assessment and gross misinformation doesn't dismiss the fact that my son, indeed presents with challenges associated with children on the spectrum.

The district doesn't want to change the classification to autism because it would require them to provide more resources.  At any rate, by law, they are required to educate our children at the same level as non-disabled children.  However, if you were to ask Aren's special education teacher, she would tell you classification doesn't guarantee additional services.  Well, she can hold on to that argument because I have one that's better:

Prepare Children for Employment, Independent Living – and Further Education

In “Purposes” of IDEA 2004 (Section 1400(d)), Congress describes what they intend the law to accomplish. In IDEA 2004, Congress added “further education” as a purpose of the law:

“The purposes of this title are to ensure that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment and independent living.” (Section 1400(d)(1)(A))

When Congress added “further education” to the Purposes of IDEA 2004, they established a new outcome for special education, an outcome that had never been identified before.

When you read in “Findings” that disabled children should be given the opportunity to meet the “challenging expectations that have been established for all children” and “improve academic achievement and functional performance… to the maximum extent possible” (Section 1400(c)(5)(E)) and you read that one Purpose of the law is to prepare children for “further education,” you are looking at a new legal standard for a free appropriate public education.  ~ Wrights Law ~

Standoff defined:  The act of repulsing or repelling an attack; a successful defensive stand.

Does Classification Matter on the IEP?

"Acceptance is not submission; it is acknowledgement of the facts of a situation. Then deciding what you're going to do about it".   ~  Kathleen Casey Theisen ~

 

When my son was entering kindergarten, it was decided at the CSE meeting that the classification be OHI - Other Health Impaired.  The reasoning for this decision as according to the CSE chair was that there was no classification for PDD-NOS; the diagnosis we received when Aren was four years old.  PDD-NOS is an autism spectrum disorder.  In retrospect, the classification should have been autism but we didn't have the "official" diagnosis at the time.  Back then, there was just so much I didn't know about my son's disability and the special education system.  I was so ignorant and very much overwhelmed by it all.  On some level, I had a false sense of security that everything would work out.  It was short lived.  The facade quickly slipped away as I noticed that my son wasn't progressing as I thought he should.

 

Fast forward to present day, I recently had my son extensively evaluated as I mentioned in a previous post.  He clearly has an autism spectrum disorder and therefore the classification needs to change from OHI to autism.  The autism classification would mean my son will get the much needed services.  In fact, had he had the autism classification on the IEP since day one, some of his struggles might have been effectively addressed.  Of course, more services means a bigger slice from the district budget.  And, right now as of this writing, the school district isn't budging on changing the classification which probably has a lot more to do with budgetary concerns instead of what is necessary for my son.

 

I have a full CSE team meeting coming up.  And, by the way, there is an IEP my husband and I haven't agreed on since June.  In the interim, the district has been given very compelling reports and documentation supporting my son's autism spectrum diagnosis.  My intention is to flat out request for a change in the classification.  It is necessary before it gets too late and my son is at risk of slipping further behind his peers.

 

"Unthinking respect for authority is the greatest enemy of truth"  ~  Albert Einstein ~

 

The Kingfisher

~ Consult not your fears but your hopes and your dreams. Think not about your frustrations, but about your unfulfilled potential. Concern yourself not with what you tried and failed in, but with what it is still possible for you to do. ~  Pope John XXIII

I love that my kids have an interest in artwork.  As a self taught artist, I know it's important to enjoy the process.  I try to teach this idea to my children.  However, Aren tends to be super inpatient about many things.  He frustrates easily when things are very challenging.  The message I send is do your best.  That everything newly learned takes practice.  It is a mantra in my home "practice makes better".  I don't like saying perfect because, perfection is added pressure.  I want my children to enjoy learning and the process of discovery.

Aren recently learned about the Kingfisher bird.  I think he heard my daughter mention it's her favorite bird.  Aren looks up to his big sister and in many ways, she is a good role model for him.  Jade, my daughter always carries a book or two wherever she goes and so does Aren.  It's a very endearing thing.

This drawing is Aren's first of a Kingfisher from his memory.  I asked him to explain his process to me.  He said, he made the body like a "gun".  I thought that was interesting and clever.  The gun image in his mind helped him although I'm not an advocate for guns of any kind.  I didn't want to squelch his excitement with my sensibility about guns so I told him it was a good approach.  Aren felt very excited about his first effort.

My kids see me when I create art.  I look for images or photograph my own as reference material.  Aren asked me to find a Kingfisher on the Internet so he can create another drawing.   He wanted to make another piece by observation and I fully encourage it.  I did a quick search and found this image:

The following is Aren's impression of the above photo:

There was a time when Aren had a very difficult time making shapes.  Artwork is a combination of different shapes.  When I create art, I focus on the shapes and teach my kids to do the same thing.  The drawing above for Aren is an excellent effort in my opinion.  In fact, for him, I think it's impressive.  Well, Aren didn't agree with me.  He became extremely upset and completely melted down.  He cried and carried on for about 10 minutes that his drawing looked nothing like the photo.  He said, "it's horrible"; "it doesn't look like the picture".  This reaction is typical for Aren when he finds work challenging and out of reach from his point of view.  My heart goes out to him but I try to tell him the efforts he makes are very important and if he doesn't give up, with practice he will improve.

Children with special educational needs often require different tools to learning from kids who are neuro-normal.  The perspective of the child on the spectrum is often unlike the child who doesn't have the disorder.  To this day, my son continues to play with his toys in a repetitive manner, IE lining up his trucks and cars.  Challenges that an average kid might take in stride, is greatly amplified for my son.  I don't want my child to feel defeated.  I want him to have the tools to help him succeed and help him feel good about himself.

At the beginning of the school year, on Aren's composition book, I placed a picture of him standing next to the wax figure of  Kareem Abdul Jabbar with the caption, "Defeat Is Not An Option".  When I put it on his notebook, Aren asked me, "what does defeat mean?"   He couldn't pronounce defeat so I had to help him with it.  I told him it means not to give up; to keep trying; to do your best.

"When someone tells me there is only one way to do things, it always lights a fire under my butt. My instant reaction is, "I'm going to prove you wrong!"  ~ Picabo Street ~

I Hate School and What Day Is It?

"When I was a young coach I used to say, "Treat everybody alike." That's bull. Treat everybody fairly."
~ Bear Bryant ~

Yesterday, Aren came bursting through the door declaring, "I hate school".  He then continued in a very whiny voice which at first was difficult to understand, "I had to do math at recess".  And, "it was hard"; "I don't understand".  I asked him why he was made to do the work at recess and he told me because he got it wrong during class time.  My son's upset made me feel very upset, in fact, I felt angry about it.  This is the 2nd time this school term, my son was made to do make up work at recess.  And, today was the 2nd time I requested for the teacher to stop this practice.  This is another example among many where this district disregards the parents input regarding the education of their child.

Aren feels punished and singled out even if he's working in a small group when other kids are having fun at recess while he isn't.  Math is an area of significant weakness for my son.  By making him do the work when he rather run and play will only instill resentment.  The resentment will potentially lead him to being turned off and he will tune out completely from learning it.

My son has PDD-NOS and the disability affects his short term memory.  Last night at dinner, Aren asked "what day is it".  I know that sometimes this is an issue for him so I ask him to tell me "what was yesterday?"  He tried to remember but couldn't.  Aren wanted to know if it was Friday.  My son is allowed to buy ice cream on Fridays which he never forgets.  When it comes to sweets and desserts, Aren is first in line.  So I asked him, "did you have ice cream today?"  Of course, he said no because that is definitely something he would remember.  As much as I tried to get him to recall, it was challenging for him.  We finally told him, it's Wednesday.  This morning, Aren did it again.  He asked, "what is today?"  Although he was told just last night, it was Wednesday, he couldn't tell me that today is Thursday. 

The memory lapses are splintered which is typical to his abilities and disabilities.  There are days when I use deductive reasoning with him, he'll arrive at the answer on his own.  And, then there are other days like yesterday and today, where he struggles to get it right.

"The existence of forgetting has never been proved:  We only know that some things don't come to mind when we want them."  ~ Friedrich Nietzsche ~

My Child Needs This But He's Not Getting That

"To understand the heart and mind of a person, look not at what he has already achieved, but at what he aspires to."  ~ Kahlil Gibran ~

I watched the HBO documentary:  I Can't Do This But I Can Do That, with my family last night.  As I watched it, I couldn't help to think of how my son's educational needs are inadequate in the current setting.  Aren has dyslexia in addition to PDD-NOS.  He could benefit greatly from assistive technology such as speech to text software tools.  Aren has significant problems getting his thoughts down on paper.  His efforts are at first grade level.  The constant realization is making me feel very raw.  When I think on it too much, I feel depressed and at times, sob uncontrollably.  Last night, was no exception, I cried as I watched.

Aren is well aware he is behind his peers.  It bothers him a great deal and I know it's affecting his self esteem.  When we were watching the program, Aren seemed engaged.  He was able to see there are other kids having similar issues and they are learning to work with it.  In fact, some of the kids are able to celebrate their differences.  They have the added benefit of being in a school environment that have the tools to help them work to their potential.  I wanted Aren to see that with the appropriate tools, his learning difference can be addressed.  As we watched, Aren said to me, "I have dyslexia, right?"  I acknowledged him and he started to feel sad but I immediately reminded him that he learns differently and with the right tools, it will make it better for him.

Yesterday, part of his homework assignment was to choose 5 words from the spelling list and write 5 sentences asking a question.  My son could only muster up 3 sentences and each one began with "what" and were 3 - 4 words in length.  Why is it that he is in 3rd grade and only able to produce rudimentary work.  Well, as expressed in my earlier posts, his educational needs are not being adequately addressed because of a mindset that my son is "slow to learn" and this is the "best we can hope for".  If indeed a child is "slow to learn" that doesn't mean a teacher takes a holiday.  It means there needs greater effort on the part of the educators and to bring in added resources to get the job done.  This is called an IEP:

A plan developed for an individual child who through educational testing is determined to have learning disabilities. By law, the child's educational plan is modified to accommodate the child's unique learning requirements

After coming off a horrible CSE meeting in June, I had Aren extensively evaluated over the summer.  In addition to the medical evaluations, we took Aren to the highly regarded NYU Child Study Center in NYC.  We were fortunate to have Aren seen by Dr. Elizabeth Roberts and Dr. Melissa Nishawala.  The doctors have a respectable educational background and expertise with children who have autism and learning disabilities.  The evaluation consisted of 3 intense days.  The first day was the 3 hour parent intake interview.   Following the initial interview,  Aren had two intense days of testing.  In fact, the testing was so thorough that by the end of the 2nd day, he was physically and mentally exhausted.  His immune system was compromised  from the stress and he developed flu like symptoms, IE headache, fever, nausea, etc that lasted for a couple of days.

On many levels, I felt badly I had to put my son through so much.  It seemed almost cruel and unjust.  Not to mention, the financial sacrifices we had to make.  We had to take our son for O/T over the summer and spent $888.00 in therapy fees and transportation.    That amount is small compared to the NYU study fees.  However, I knew my son wasn't mentally retarded.  And, I know his needs are not being adequately met in the current setting.  We were placed in the position to prove and pinpoint Aren's challenges.  In doing so, we expect to have Aren's educational needs appropriately addressed.  Aren needs to be in a smaller classroom with his peers; children with similar challenges.  As shown in the documentary, there are many benefits to an inclusive  placement.  Aren would have more opportunities to focus, receive intensive intervention and educational tools to assist in strengthening weak core areas.

Although I have been advocating for my son since infancy, I've been turning up the heat since Aren entered this school district.  As a parent, I know my child best.  Many parents will tell you when something is out of sync.  It's often referred to has a "gut" feeling.  I'm not interested in making problems for this school district, however, all dirt comes out in the wash and that can't be helped.  I want my son's educational needs met before it's too late.  His needs should have been attended to yesterday but I can't reverse the past.   I have to worry about now and the foundation or lack of it in the present.  I need for these issues to be resolved today.  I can't have my son's educational future short circuited due to a one-sided mentality or preconceived ideas about him.  I worry if race enters into the equation regarding the established mindset in this school district.  Disproportionately, African American children continue to be under educated compared to whites.  Statistically, African American children are diagnosed with autism and learning disabilities later compared to whites.  Yes, I will bring up the race card because, in this situation it might be a very important piece not to be overlooked.

"There also appears to be more confusion among clinicians between autism and other disorders in black children, compared with whites. In this study, black autistic children received more misdiagnoses than whites, and they were more likely to be misdiagnosed as having organic psychoses, mental retardation, or selective mutism. White autistic children were more likely to have been misdiagnosed as having ADHD"  ~ Nearly Two Year Delay In Diagnosing Autism In Blacks by Mary Ann Moon ~

I have to make a case for my son because he needs me to do it.  He can't do it for himself; at least not yet.  I will begin preparing him, however.  Although he is only 8 years old, he needs to understand how to advocate for himself.  I will not wait until he is 14, 16 or 21.  It begins now.  I can't shelter him from the realities of what his parents are required to do on his behalf.  It is his right to be part of and observe the process.  In doing so, he will begin to learn and understand.  I do this because, I'm his mother and I love him.

We Will Have to Agree To Disagree

Effective teamwork is all about making a good, well-balanced salad not whipping individuals into a single batch of V8.  ~ Sandra Richardson, OD Consultant ~

What does it say to you when you're advocating for your child and all you're really asking for are a few accommodations and the CSE chair responds with "we will have to agree to disagree"?  And, all the while he was saying it, he was shaking my hand and smiling in my face.  For me, it felt like I was slapped in the face.  How dare I even consider to ask for the smallest thing such as Cuisenaire Rods to help my son with math.  Or, to increase the O/T to twice a week in a 1-1 for my son who has handwriting issues.  These are some of the requests I made at the CSE meeting this past June that were denied.  Like the quote above, I felt as if I was whipped into submission.  By the way, I first learned about cuisenaire rods from Dr. Tepp during the IEE interview.  And, for whatever his reasoning was, he failed to add it to his report.

I have a kind of post traumatic stress response to that statement because I just can't get the image and words out of my head.  It's awful because those words and image tell me this school district only cares about their agenda exclusive from parents.  Under New York State special education regulations and federal law, the first people at the top of the list on an IEP team are the parents.  That's right, the parents.  It sure didn't feel that way to me or my husband at the June meeting.  We refused to agree to the IEP.  In fact, the school district is using an IEP that wasn't signed by me and my husband.  I wrote several letters in June with copies going to the special education associate in Albany requesting a team resolution that went unanswered.  We continue to be in disagreement and it is now the end of October.

What to do.  What to do.  I'm not an idle person.  I don't like the feeling of grass growing under my feet so I got busy during the summer months.  Aren was a real trooper.  He endured quite a lot.  I needed answers that couldn't wait and I had to make a V8 out of my kid because, his permission wasn't an option.  I did need him to participate and for the most part he did.  I dragged him to an O/T and had him evaluated.  Yep, it was conclusive, Aren's handwriting was immature for a kid approaching 3rd grade.  I took him to a pediatric neurologist where blood work was ordered.  My son is absolutely terrified of needles.  It is heart wrenching seeing how he reacts to it.  He cries and screams.  He has to be repeatedly consoled and sometimes held down.  It is emotionally draining for everyone.  My son had to endure an MRI of the brain with sedation; another needle but this time it was an IV.  My son had to be wrapped in sheets and held by me and a nurse in order for the other nurse to insert the IV.  My kid was in panic mode.

All of the testing was necessary because according to the district, everything was honky dory for my kid at school.  He is simply a kid who is "slow to learn" and his performance is the "best we can hope for".  Another aside:  "best we can hope for" is a statement that was made by Dr. Tepp.   Thank you, Dr. Tepp for failing to see my son's potential.  If you read this blog,  I want you to know how much more difficult you have made it for us to advocate for our son.

At the June meeting, the school psychologist suggested we change the IEP classification from OHI - other health impaired to MR - mentally retarded.  I can only imagine the look on my face when this label was suggested to me.  I'm sure it wasn't good because I just don't hide my emotions very well at times.  I really need to learn to have a better "poker" face.  Note to self - work on poker face.  I managed to take a deep breath and said, we'll just need to revisit that at the end of the school year.  Right now, I'm not comfortable making that decision.  The school social worker looks over at me with a "sympathetic" look on her face and says, "I know it's difficult to think of our children as being mentally retarded".   Are you kidding me, lady!

I want you to know, we never got to discuss goals for Aren.  Parents have a right to write goals in to the IEP but that never happened.   In fact, before the meeting was concluded, the P/T and the classroom teacher got up and left with some excuse they needed to be elsewhere.  When I think back, the only people left in the room beside me and my husband was the CSE chair, social worker, psychologist and I think the special ed teacher but she may have disappeared as well.  I have been to a number of CSE meetings over the years and never once did anyone leave before the meeting ended.

My Son Is Not Mentally Retarded

"If you start from the perception that someone is mentally retarded, the expectations for that individual aren't going to be very high".  ~ Autism Spectrum Disorder: The Complete Guide by Chantal Sicle-Kira, Temple Grandin

I'm anxious to get this blog going because I want people to know how difficult it can be for parents raising a child with special needs.  I also think the challenge is greater when our child comes to our family through adoption.  Those who aren't in the adoption community might find the idea difficult to grasp.  One must first have the experience before they can begin to understand.  I will go out on a limb by saying, my challenges are greater because my husband and I chose to adopt outside of our race.  And, our situation is compounded by living in a homogeneous community.

Nevertheless, due in part to the legacy of slavery, racism and discrimination, African Americans as a group remain at a pronounced economic, educational and social disadvantage in many areas relative to European Americans. Persistent social, economic and political issues for many African Americans include inadequate health care access and delivery; institutional racism and discrimination in housing, education, policing, criminal justice and employment; crime, poverty and substance abuse ~ Wikipedia ~

It is my perception that institutional racism is a significant concern regarding my son and the school district where I live.  There are subtleties of this type of racism.  For example, when we first entered this district, my son was starting kindergarten.  I was eager to see the classroom prior to the first day.  When I went to look around, I saw children's names set up like a train.  My son was the "caboose".  Now that might not seem important but if your child is a minority, it might send up a flag.  It's something I noted in my mind that left a lasting impression.

Since the beginning, Aren has been labeled by the special education teacher as "slow to learn".  She is also the one who consciously or subconsciously decided my son is the "caboose".  This teacher also told me that my son's IQ would go down.  Did she have it set in her mind, my son would not succeed.  And, in doing so, help to justify that she need not put as much energy into his education?  At a CSE subcommittee meeting last year, I overheard this same teacher saying, "I don't get it" as we were advocating for better services for Aren.  What exactly didn't she get pray tell?  Was it difficult for her to comprehend that we, Aren's white parents were fighting so hard for a child that not only was not of our blood but also not of our race!  Again, if you don't know what it's like being in a multi-racial family through adoption living in a homogeneous community, this might be difficult to appreciate.

This past April, I advocated heavily for the school district to provide an IEE - independent education evaluation.  I was able to get the district to pay for it which is no small feat.  Basically, I wanted an assessment of where Aren was at and what would be needed to help further his education.  Aren continues to demonstrate that he is behind by 12 - 18 months which is unacceptable.  I thought, let's get the evaluation to help establish where the gaps are so we can address it.  It seems simple enough, right?

I requested Alan Tepp, MD a clinical psychologist who diagnosed Aren with PDD-NOS when he was 4 years old.  Please keep in mind as I move forward, the district paid for the IEE.  The initial meeting with Dr. Tepp consisted of a family interview and a separate interview with Aren.  The entire interviewing process took approximately 1.5 hours.  Then the psychologist visited my son's classroom where he spent 1.5 hours observing.  The "evaluation" didn't consist of separate, independent tests or measures of any kind.  Following the interview, Dr. Tepp provided his "findings:" in a report which he prefaced by telling us "we will be disappointed" with it.  Disappointment was an understatement.  The good doctor essentially, lifted test scores from my son's IEP and based on those and the interviews decided to change his original PDD-NOS diagnosis to mentally retarded!

You might be thinking at this point, what's the big deal.  It's only a label.  It makes a huge difference when it comes to perceptions of an individual and how their educational needs will be served or not.  My son isn't mentally retarded.  Aren's IQ is adversely affected by his autism spectrum disability.  Further, my son was seen by several professionals(past and present) including a recent in depth study by the NYU Child Study center who's findings do not point to mental retardation.  To add insult to injury, the CSE at the last meeting refused to change the IEP classification from Other Health Impaired to Autism.

How does a school district come to decide a classification?  Usually, under less adverse settings, the classification is decided based on professional medical evaluations and the parents.  How can a school district justify not changing a classification when evaluations are compelling?

Working As A Team

"Now join your hands, and with your hands your hearts".  ~ William Shakespeare ~

When my son was "officially" diagnosed with an autism spectrum disorder, we were living in the Carmel School District.  We had to meet with the CPSE to discuss an appropriate placement for Aren.  I was told good things about the St. Francis special education program so we started there.  Aren was there the first 2 years of pre-school but thought he wasn't coming along as well as we hoped.  At the end of his 2nd year, we met for the end of year meeting.  We advocated for a different placement in a school that would require Aren to travel approximately one hour away from home.  It was the Hawthorne Country Day School and they use ABA - applied behavioral analysis approach to learning.  As Aren's parents, the commute for our son was well worth it if he meant his educational needs would be met.  That is what an FAPE is intended for - an appropriate education that addresses a child's individual needs.  I emphasize this because special education is not intended as a one size, fits all approach.  We were not looking for the best education because 'best' isn't intended under the law.  We wanted an appropriate placement to help Aren's disability.

After much discussion and negotiation explaining why an ABA program would address Aren's needs, the CPSE chair was in agreement to the placement.  It wasn't difficult although every special education meeting tends to be stressful for parents.  The decisions made in the meeting influences the resources our children will receive or not.  In this district, we didn't have to write dozens of letters, recite the law or bring in an parent advocate.  It was clear Aren needed more then what the St Francis placement was able to provide.  The CPSE chair showed consideration to my son's indiviudal needs.  He recognized, our son's needs would have a better chance of being met in another placement.  This is what we call "teamwork".

Each child's individual needs must be addressed as according to the law.  An IEP team as defined puts parents at the top of the list.  Our concerns must be given respectful consideration - not an illusion of consideration.  The difference is obvious when the committee chair says to a parent, "we have to agree to disagree".  That statement doesn't show respect for a parent's concern.  That statement says, I heard your concerns but I'm not listening.  The district's agenda is premeditated regardless of what the parent brings to the meeting.  A premeditated agenda doesn't consider the individual, educational needs of a child.  The district is thinking only about their own needs, IE. cost of out of district placement, large egos who arrogantly dismiss parents concerns as some form of hysteria and refuse to acknowledge the fact the child's performance might improve elsewhere if only given a chance.  This is the thing I'm facing now in the Webutuck School District where I live with my family.

I Am More Then An Artist...

"If we do not rise to the challenge of our unique capacity to shape our lives, to seek the kinds of growth that we find individually fulfilling, then we can have no security:  we will live in a world of sham, in which our selves are determined by the will of others, in which we will be constantly buffeted and increasingly isolated by the changes round us."  ~ Nena O'Neil ~

One plus one doesn't equal two is a blog about a mother's challenges having a child diagnosed with an Autism Spectrum Disorder.  By way of introduction, this entry post will be relatively long.

Several years ago my 8 year old son, Aren, presently in the 3rd grade, was diagnosed with PDD-NOS (pervasive developmental disorder-not otherwise specified)  He is high functioning however, his abilities are "splintered".  Aren's IQ is borderline and this is a result of his disability.  It is not a fair assessment of his intelligence rather it shows how this disability can affect IQ testing scores.  Aren can be quite clever about things on his agenda and has an extremely determined nature.  He can be one tracked and has a difficult time taking 'no' for an answer.  In fact, he can be relentless in his pursuit to getting what he wants.  I do not cave in however, because as his mother, I know in the long run, this will not serve him well.  I am Aren's number one advocate.

I am a mother, wife, daughter, sister, friend, and neighbor.  I juggle the many sides of who I am.  However, more energy is put into one aspect of my life over another at times.  Some days, especially lately,  it's challenging to find balance in my life.  It's especially so having a child with special needs.  It can be all consuming when not only must I raise my children (I have two) to become well balanced contributing members of society, I must fight tooth and nail with the school district to ensure my son receives a FAPE - free and appropriate education as it is defined by law.  This is what this blog will be about; parenting a child with special needs.  Through this live journal, I hope to provide insight and information for anyone who wants an inside view of what it's like having a child on the Autism Spectrum.  I hope to offer a window to the hurdles parents must overcome advocating for a child's special education under adverse conditions.  And, challenges many parents face navigating their way through the special education system.

In this journal, I will strive toward frequent posts.  I will try to write daily if I have something to share.  I think it's important to discuss these things because it might be helpful for other people experiencing similar challenges.  Having a child with special needs in the public school system can be a daunting experience.  There is so much parents must learn and understand so that they can be the best advocate for their child.  It's exhausting work and a full-time job.  Looking for resources and information feels like being stuck in the middle of the ocean with no buoy or life boat.  It can be extremely overwhelming.  Further, when parents enter the special education system, they usually don't enter it well armed with a plethora of information.  In essence, they don't start out in a position of strength.  Naively, they think, the school will guide us and provide the education their beloved child requires.  It's an assumption that many parents make and in many instances, it is 100% incorrect.  Schools are not in the business to lay out a rosy plan where your child will benefit to the fullest.  In fact, often the opposite it true.  So unless you understand what your child needs and how to get it, don't depend on the schools to provide or expect they'll lead you down the path of knowledge.  It is not that simple.

It's important to provide a little background so you can get a better picture of my challenges and all the beautiful sides of my son.  Aren is not just a person with special needs; he is someone who enjoys many things, has a zest for life and loves to laugh.  Aren can find amusement in the simplest of things at times.  His favorite subjects are Pokemon, dinosaurs and cars.  Once Aren gets started on talking about Pokemon for instance, it's challenging to get him to change the subject.  When he becomes disappointed about something, he can severely melt down and be explosive.

We are a multi-racial family formed through adoption.  My daughter was born in China.  My son is African American.  My son has been with us since he was an infant.  He was fussy in the beginning but was a sweet baby.  He has developmental delays so I was able to get him started with early intervention.  Basically, with early intervention, clinicians visit your child at home and provide services such as speech and physical therapies.  My son needed both types of therapies.

When Aren aged out of early intervention, I enrolled him in a mainstream pre-k program.  I thought after early intervention, my son was "good to go" although deep down inside, I had unanswered questions and concerns.  Part of the ambivalence is the unwavering desire for everything to be 'ok' with your child.    After only two weeks into the program, I was told my son couldn't remain without a "shadow" or one on one aide.  My son was difficult to manage, didn't comply as the other children and would run out the door.  I was crestfallen thinking my son was being kicked out of pre-school.  I realized right there and then, I had to have him evaluated further for special education. 
Since we weren't clear as to the nature of his challenges, we had Aren evaluated by a highly regarded pediatric neurologist, Martin Kutscher.  Dr. Kutscher thought my son was showing symptoms of PDD-NOS, an autism spectrum disorder or ASD.  Later on, due to behavioral issues at home, we sought a another opinion from a child psychiatrist.  The opinion of the psyhchiatrist was that Aren was showing symptoms of PDD.  So, now we had two professionals arriving at the same conclusion.

When Aren was approaching age 4, we decided to take him to yet another professional, this time a child psychologist.  We needed to know for sure as if it wasn't enough to know our child was on the autism spectrum.  Now, this doctor also said, PDD-NOS but wouldn't say or use the word Autism.  However, to be very clear, PDD-NOS is an autism spectrum disorder.

That was the beginning of what would be a long journey of advocating for my son.  We took our reports and entered our first special education meeting known as a CPSE = committee on preschool education.  At the time, we were accompanined by our case manager who helped to advocate for Aren's placement.  With the case manager's assistance, our first meeting was relatively seamless.  Our son was approved for a pre-school special education placement and we were on our way.  I want to point out that we lived in a different school district from where we are now.  This is a very important piece to remember because as you'll find out later on, the school district where we live, is not being compliant when it comes to my son's IEP = individual education program.