Thursday, February 17, 2011

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. 

Sunday, February 6, 2011

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.

Friday, February 4, 2011

A Typical Exchange

African Proverb:  "you're either part of the solution or part of the problem."

Does anything in this satirical video sound familiar to you?

If so, you're not alone. There are often times when I've voiced the concerns I have for my child the administrators and teachers in my school district will discount it. We make jokes over things we feel powerless to change like our politicians in government. Comedians use the pains and ills of society for fodder often in their work. Laughing keeps us from crying.

A couple of months ago, I received a note from my child's general education teacher where she mentioned that she and the special education teacher have M.A.'s. Really? I certainly hope that minimally they possess adequate credentials. There are many things going on; too many to mention here at once, however, my reply was, I have a PhD on life! Sarcastic? Perhaps. But this is the result of parental frustration when we're working without end to get our child's appropriate educational needs met in the public school system.

My son is only 9 years old.  Unfortunately, I know that I have my work cut out for me negotiating in and navigating my way through the special education system.  And sadly, we can't expect the schools to simply identify the problem and do the right thing. That will not work in many cases. However, at the same time, schools must take parental concerns seriously without argument.  For instance, if I say, my child isn't demonstrating the same level of work at home as he allegedly is able to do at school, it is my opinion the school needs to pay attention and do an assessment.   And, if we provide a privately obtained evaluation by a reputable professional or agency, the district needs to pay attention to it.  Not to simply take the evaluation under consideration.  The district should be required to take a closer look and work toward the recommendations outlined to meet the individual educational needs of the child.  Parents shouldn't have to brace themselves for an argument like the scenario in the video. It is an all too common exchange between parents and school personnel.   And, if that isn't bad enough, when we push to be heard, the other rhetoric thrown at us is "budget cuts".  I know but I'm still a tax payer and there are laws on the books to protect the rights of children with special educational needs.

The bottom line is that schools and parents need to collaborate in a cooperative manner in service to the student.  The student should be in the upper most part of every one's minds on the CSE team.  The team approach should be to identify the problems and take steps to correct it.  The concept is simple and it should be an achievable goal.  As for budgetary reasons, special education is funded through state and tax dollars.  Federal and state laws are clear on providing a free and appropriate education for children with special needs who have an IEP.  My child has a disability that impacts his learning and how he learns.  In effect, the district must work toward meeting the individual, educational needs of my child and children with special needs.  As long as the laws are clear in this regard, it is the duty of school districts to follow it.