Tag Archives: Board of Education

What Are State Assessments Assessing?

Yesterday, while at Emma’s school, her teacher showed me a sample of the state assessments that Emma is required to take, though there were record numbers of parents this year who protested them by opting out.  These assessments are done twice a year and take an enormous amount of time and energy from all involved.  The page the teacher showed me was about Ronald Reagan.  It was a series of facts that are read and then the student is supposed to choose the correct answer from two choices related to the facts just read.  I decided to use the page as an example of why I so vehemently object to these state required assessments as they are currently laid out.

I read the facts to Emma and then asked her to give me the answers by saying the correct answer out loud.  This is how the test is typically done.  Emma chose the last choice to each question every single time.  I then said, “Okay.  Now let’s do this using your letter board.  I asked the same questions, only this time, offered her the letter board and without any hesitation she got 100% correct.  I then asked her to circle the correct choice and she was able to do that too, which was interesting to see.

We did not go over more of the assessment, but for all those students who are like Emma, these assessments are useless.  They are not telling anyone anything helpful.  In fact they are giving inaccurate data.  If Emma had not been given the opportunity to learn to communicate using a letter board, she would have no way of proving she knows the correct answer.  How many children are just like Emma?  I do not believe for a second she is the only one who cannot say what she knows, but if given appropriate accommodations would be able to.

It is incredibly frustrating to have the state require her to take such assessments, which, as they are currently written, do not accurately assess what she is capable of.  This is my biggest objection with so much that is done when it comes to autism.  Far too often the current conversation is by people who are looking at things, similar to these assessments, and basing their beliefs on the information they are getting from them.  Incorrect information that tells us nothing of what a child is actually capable of.  Assessments, that in fact are assessing nothing.  What is being learned?  What a massive waste of time and money.  We should be doing better.  Our children deserve better than this!

*We are hoping to have the video of Emma’s presentation at CoNGO up on the blog tomorrow!

April 9, 2014

April 9, 2014

“Picture Day Moments”

Yesterday was picture day at Emma’s school.  Over the weekend I went to the photographer’s website, paid for the photographs online, chose which packet we wanted and then filled out the little envelope that had been sent home and placed it in Emma’s back pack.  Emma and I discussed picture day and she carefully chose what she wanted to wear, a red velvet dress worn with black velvet leggings.  She’d washed and rinsed her hair the night before with particular care, and as she waited for the bus, she smiled at me and said, “Smile!”  I laughed and told her I couldn’t wait to see her photograph. The bus arrived and off she went, sprinting up the steps, with me waving good-bye.

That afternoon I had a meeting at her school with a few people from her team.  I was informed that there’d been some issues in the morning with Emma distressed.  Something about wanting to leave the room.  There was mention of her wanting to leave the room because of it being picture day, but that she had to stay in the room and was not allowed to leave.  I assumed that was because the other children were waiting their turns too and didn’t think to ask for more information.  The conversation veered off to other, seemingly more important, topics.

When I returned home with Emma I opened her back pack to find the envelope for picture day just where I’d left it.  No one had taken it.  Still, I didn’t put two and two together, didn’t think to ask Emma about it and besides, she’d already been asked to write with me that afternoon at school.  I emailed her teacher telling her the envelope was still in her back pack and received a reply that they hadn’t seen it and therefore assumed that I did not want Emma to have her photograph taken, but that she had been included in the class photo.  And I felt that awful feeling when your throat feels swollen and you can feel your heart beating and your chest constricts and your breathing becomes shallow and your vision blurs.

This morning I spoke with Emma about picture day, telling her there’d been a misunderstanding and how sorry I was.  I asked her to talk about it.  She told me how upset she was that she didn’t get to have her individual photograph taken as the other children had.  “I’m so sorry” I kept saying, but I can’t make what happened any different.  I know it’s just one incident, something relatively small and in the grand scheme of things not particularly important, but you see, this is just one example of what occurs regularly for our kids who do not speak, or, as is the case with my daughter, cannot say what she necessarily intends.

There are dozens and dozens of “picture day” moments.  Little things where she is misunderstood, cannot initiate a complaint, is not asked the right questions, cannot “speak up”, cannot protest with a reason why, instead she is thought to have “behaviors” when she tries to leave the room.  Assumptions are made, well meaning staff decide they understand her and know what is going on, and maybe they do, but maybe they don’t.  How many “picture day moments” happen from one day to the next.  Expectations and questions gone unanswered, thoughts and feelings unable to be formulated into words, or words at the ready if others were only capable and able to support enough that those things could be expressed.  How often?

Teachers are trained in a definition of autism, that is incorrect.  A definition that assumes intellectual disability which is connected to an inability to make oneself understood, low IQ, problematic behaviors, unable to read aloud and therefore cannot read, a whole series of assumptions are being made daily about Emma and kids just like Emma, but those assumptions are based on a false premise.  Teachers must give our children state required assessments and those scores are believed to represent capability when, in fact, they do nothing of the kind.  Our children must prove that they are not the sum of what others believe to be true.

There is so much that is wrong with the way we think about autism and Autistic people and it begins with our children and continues from there.  Our children who are then put into schools, most of them ill-equipped to help them flourish, spend their days in classrooms where they protest in little ways all the time.  The Board of Education is a massive machine and it is one that must change from the bottom up.  The premise they are working from – that what our children who have the ability to speak words are saying exactly what they mean, that their spoken language represents what they are capable of, that those who cannot speak, who protest by biting themselves, hit their heads against walls of brick and concrete are demonstrating “behaviors” as opposed to actively protesting a system that is not helping them, curriculum is dumbed down, life skills are taught, a high school diploma is not a given, college is not viewed as a realistic goal, all of this is wrong, so very, very wrong.

How many “picture day moments” does a child have in any given day?  How many?

Picture Day ~ 2008

Picture Day ~ 2008

Emma’s Letter to Her Teachers

This is a letter Emma wrote yesterday to her teachers.

Dear ____________________,

I would like to teach you how to use a stencil board so that I can show you how much I know and so we can discuss what you are teaching me in class.

I want to learn both syntax and style of diverse writers.  Poetry and prose both interest me.  I love to write stories and welcome the opportunity to do so.

You try to teach me, but not in a way that I can learn.  Try to learn what my mother has learned from Soma and change how you think about autism.

Addition and subtraction are fun, but I have been doing that for many years and numbers are easy for me to understand.  It is boring to do the same thing over and over all the time.

I do not like school and I wish I could go to a regular school where I was treated like other kids.

Sincerely,

Emma

After Emma wrote this letter I sat with my husband Richard, clutching the three pages it took to contain these words that Emma wrote, pointing to one letter at a time on her laminated letter board.  I asked Emma if I had her permission to read her words aloud to her dad, she nodded yes and then said out loud, “on the blog.”

Education for our kids, whatever their neurology, is something every parent worries about.  Our schools are buckling under the weight of mismanagement, bureaucracy, out dated and irrelevant standardized test requirements, politics, and the diverse needs of our children, make any one-size-fits-all method of teaching impossible.

I don’t have any answers, but I intend to get some.

To anyone who has successfully gotten their non-speaking child (or a child like Emma who is able to speak, but says things they do not intend) into a “regular” school, please contact me and let me know how you did it.  Does your child have a one-on-one aide?  Did you train the aide yourself?  Do you do RPM?  Did the school work with you?  If they didn’t, what did you do instead?  Any and all experiences are welcome.  You can also contact me by email:  emmashopeblog@gmail.com.

A Session With Soma

A Session With Soma

What the BOE and Preppers Have in Common

Today is our IEP meeting with the BOE.  Perhaps the only organization using more acronyms than the BOE (Board Of Education) are Survivalists.  How and why do I even know about such a group, you might ask?  Because my husband, in his thorough research for his almost finished YA novel (it is so good, so wonderfully written, so exciting, it will turn YA literature on its head) has told me all about them.  Survivalists or Preppers as they are also known, are preparing for the worst.  Don’t ask me anything more because that is the extent of my knowledge regarding Survivalists.  However I am a bit chagrined that the name “Survivalist” has been taken by this group as it seems an appropriate name for our children on the spectrum, though if they rejected it, I suggest we parents adopt it.

But I digress… this afternoon we have to go to the BOE and meet with three or four members of their staff to go over Emma’s IEP (individualized education program) mandated by the IDEA (Individuals with Disabilities Education Act).  The point of the IEP is to help teachers and related service providers understand the specific issues, challenges and strengths of each specific child, with specific written goals for each and every child with a disability.

This is how the NYC DOE (Department Of Education) describes the IEP: “An Individualized Educational Program (IEP) describes the special education and related services specifically designed to meet the unique educational needs of a student with a disability. An IEP is the guiding document for a student’s educational program. It includes all of the goals, objectives, present levels of performance and related services that are recommended for the student.”

The first time I went to such a meeting, I was very excited, assumed the BOE cared about my daughter and her educational needs, wanted what was best for her, would urge for the best possible services, would work with me to get those services, suggest the most appropriate placements, write up a detailed and suitable IEP for her, etc.  To say that I was disappointed does not in any way express what actually transpired.  I left that first meeting surprised by my naivety, realized that of course this was a huge bureaucracy, bound by law to write an IEP, underfunded, understaffed doing the best they could with limited resources in a very imperfect world.  In addition to all of that, one sits at an oval table with complete strangers most of whom have never met Emma.  One person at the meeting will have done an assessment of Emma for 30 minutes, several months earlier.  Emma will have been one of hundreds of children they saw.  From that 30 minute “assessment” a report will have been written and all parties from the BOE will have that report in front of them, which they will refer to during our meeting.  This is a sample from last year’s report:  “Emma is minimally verbal, spoke in single word utterances, or short, attenuated sentences for the most part, was able to repeat simple phrases heard, and was echolalic.”

When I read that report last year, not only did I not recognize Emma, but I wept for this child that I did not know.

During the IEP meeting the staff from the BOE will not use the words “sensory issues” in fact, the word “sensory” will not be uttered in any context.  Nothing will be mentioned about the necessity of having a sensory diet, that in order to focus and attend to academic work Emma will need certain sensory supports.  Richard and I will mention these things.  We will insist that they be included in her IEP.  We will go on at length regarding her need to be allowed a break so that she can move between tasks, we will insist that a compression vest, a slanted writing board and various other sensory aids be added to the report.  To be blunt – we will be a pain in the BOE’s ass.  They will be relieved to see us leave.  This is not our intention.  Our intention, our sole purpose during this meeting is to ensure an accurate and appropriate set of goals are written for our daughter.  Even if no one from the BOE ever reads them again until our next meeting next year, we will leave knowing that we did our best for our daughter.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

I Believe…

Every year we have a meeting with the Board of Education aka BOE.  Yesterday morning was our scheduled meeting time, but because Richard has been ill, I went alone.  I do not look forward to these yearly meetings.  And as yesterday morning got off to a bumpy start I was doing my best to bolster myself for what I knew was going to be an emotionally  difficult time.  They always are.  It is at these yearly meetings when we go over Emma’s IEP (Individualized Education Program).  Each year the BOE sends someone from their department into Emma’s classroom to observe her for a half an hour.  From that observation, a report is written, almost always a report we read with dread.  It’s not that they are unreasonable or unfair, though sometimes Emma is unrecognizable, it’s that they are stripped down to the basics.

A sample from one of these reports:  “Emma came down from the cabinet and lay down on a rug.  At 9:07, she remained lying on the rug.  At 9:08, she went out of the classroom and came back barefooted with a plastic box.  A teacher assistant showed her two bottles of paint.  She said, “no” loudly…”  The report goes on to depict a low functioning autistic child (Emma) who is somewhat responsive to the teacher’s assistant, at times non-compliant and with almost no verbal language.

This year Emma was also assessed by a psychologist sent from the BOE.  This report was even more troubling: “Emma is minimally verbal, spoke in single word utterances, or short, attenuated sentences for the most part, was able to repeat simple phrases heard, and was echolalic.”  The report goes on:  “Emma was able to hold a pencil somewhat awkwardly and make a scribble, or simple circular motion.  She was unable to copy simple vertical and horizontal lines, or any simple recognizable geometrical designs.”

As her mother it is difficult to read these reports.  I look at my daughter, my beautiful, funny, athletic Emma and I see her potential.  I choose to believe she is capable of so much.  I choose to believe she understands so much more than she appears to.  I choose to believe she will one day read and write.  I choose to believe one day she will communicate with us.  She will tell us what it’s like for her.   I choose to believe these things because to do otherwise is not a life I want to live.  But when I am confronted with reports such as the ones I’ve quoted from, it makes me question, even if for only a moment these choices, these so called beliefs of mine.  What if I’m wrong?  A question I always follow with – what does it matter if I’m wrong?  Because if I’m wrong, I won’t find out until I’m very old or will never know because I’ll be dead. I will always choose to believe I’m right about Emma.  I have to.  All the work we do with her every single day is because I believe in her abilities.  I believe she can do more.  I believe she is capable of so much.  When I tell her we have to do yet another reading exercise or writing exercise I am doing so because I believe she can.  When I read to her about Harriet Tubman or Helen Keller or Balto or the discovery of King Tut’s tomb,  I believe she is taking it all in.  When I ask her if I should keep reading and her answer is always – yes – I take that as confirmation of my beliefs.  I know I am making a choice.  I know my decision to believe these things are based on very little, but never-the-less I believe.

I believe in Emma.

For more on Emma’s journey through a childhood of autism and my journey in parenting an autistic child, go to:  EmmasHopeBook.com

Emma waiting for her school bus this morning