Thursday, September 22, 2011

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.

Tuesday, September 20, 2011


"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 ~

Friday, September 16, 2011

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 ~