wow…it’s been a while since I’ve written anything. Almost 6 months.   I never really planned for that to happen — but life kinda got in the way.

You see, sometime around my last post we learned some exciting and all-consuming news — we learned that we would be moving!  And so, over the course of a few months we sold our home in NC, bought a home in CO and moved out West to start the next chapter in our lives.  Given that Owen would be starting Kindergarten, and to minimize the transition for Abbey, we moved as quickly as we could so to get somewhat settled in before the first day of school.  With a few snags and bumps along the way we made it safe and sound and just in time to unpack the essentials and go “back to school” shopping to gather the necessary supplies.  The kids started their new school in August and so far things have been good.  Honestly, with regards to Owen, things out here in CO have been night and day compared to what we experienced in NC and hopefully I’ll be able to write more about that soon.  It’s amazing to experience cordial and cooperative IEP meetings where everyone communicates effectively, respects one another, and wants to do what is in the best interest of the child.

I wasn’t sure how I would feel after leaving NC and leaving behind all the drama that came with filing for due process.  I can tell you now, however, that aside from the occasional update from our lawyer – which tends to throw me backwards into a black-hole of anger and frustration about the whole process — I have moved on (or at least started to).  I didn’t realize how much of my life had been consumed by the court case and how much animosity I harbored until I physical removed myself from it and let it go.  I feel so much lighter.

Here’s to a new chapter.  Just really want to be able to close the book on the last one.  In time…in time…

all day yesterday and today I kept thinking that something about this week was important in our lives but i couldn’t quite put my finger on it.  We’ve had a lot going on lately so I figured it could be anything…but then it hit me!  One year ago Thursday is when we received the ALJ’s decision in Owen’s case.  That was an entire year ago – 365 days ago.  I don’t think I ever thought that this whole ordeal would be over after that decision and I did brace myself for it to go on as long as a year, but still….  We are now at the year mark and all I can say is that we are currently in some administrative blackhole (for lack of a better and more accurate description) somewhere in the fedearl court system.  I don’t like this part.  The waiting.  It’s hard. 

Yet, we push forward.  We still believe 110% in what we have done and what we continue to do. 

In case you need a refresher on last year’s event –  here’s the blog post I wrote then: https://educatingowen.wordpress.com/2009/06/24/d-day/

And here’s a summary of what that initial decision said:

Administrative Law Judge Melissa Lassiter’s Final Decision in the case OMM v. Orange County Board of Education rules in favor of the Petitioner (OMM) on every count.   

Judge Lassiter found that Orange County Public Schools 

1)     failed to provide OMM, a 4 year old boy with high-functioning autism, a free and appropriate public education (FAPE) through the development of an Individualized Education Plan (IEP) 

2)     failed  to provide OMM FAPE through an IEP that was reasonably calculated to provide OMM with education benefit 

3)     failed to provide OMM FAPE in the Least Restrictive Environment 

4)     procedurally and substantively failed to provide OMM FAPE by failing to provide OMM with education services before Oct 28, 2008 

AND she found that 

1)     the Parents’ private education placement was appropriate and that they are entitled to reimbursement for costs and expenses as provided in the Conclusions of Law.

The following is reposted, in its entirety, from OCPearl’s blog.  If you have a comment, or just like what you read, make sure to tell them.

******************************************************************

Did you know …

  • Autism now affects 1 in 110 children and 1 in 70 boys
  • Autism prevalence figures are growing
  • More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined
  • Autism is the fastest-growing serious developmental disability in the U.S.
  • Autism costs the nation over $35 billion per year, a figure expected to significantly increase in the next decade
  • Autism receives less than 5% of the research funding of many less prevalent childhood diseases
  • Boys are four times more likely than girls to have autism
  • There is no medical detection or cure for autism

(from Autism Speaks)

“In the United States, a child is diagnosed with autism every 21 minutes–a rate that is growing faster than that of any other developmental disorder…” ecshool news

To date, Orange County Schools have not addressed the challenges that these statistics will pose for schools, teachers, students, and families in our community. Rather, they have buried their heads in the sand, choosing to adopt a philosophy much like this one: If we make special provisions for one or more autistic children, then we will have a whole wave of people moving here and bringing all of their special needs children to this county. Let’s go to court with taxpayer money, hoping that most families will not be able to afford using their own money to fight us.  Let’s ignore the challenges facing us.

The OMM v. Orange County Board of Education case has challenged the lack of forward thinking and educational policy that this county refuses to adopt to deal with the daily challenges of providing quality education for all of its students.  So far, the court’s voice has been loud and clear, and still the county has buried its head in the sand, looking to bad legal advice which fills the coffers of lawyers rather than devoting taxpayer monies to developing sound educational philosophy that would solve the OMM case and actually make us a leader, forward-thinking, in developing an equal and quality education for every student.

Those who are reluctant to change the face of present policy, budget expenditures, and the “normal” classroom — wake up.  The future is here . . . and holding on to that traditional way of doing business in education is much like holding on to the sexist, racist stereotypes of the “good old days.”   We know there are those who live in that comfort zone, but the rest of us need to face the future with acceptance and education.

We challenge each of you to understand autism and the challenges that these students and families face in the traditional education system.

Are we going to be pulled screaming and kicking into the 21st century, ignoring the facts and fighting the future that faces us?  and paying lawyers?

Are we going to elect a school board that continues to hope the autistic children in our county “go away” or “stay invisible” ?

Or are we going to elect a school board that is DEVOTED to  providing an equal and quality education for all students, including this growing population?

We need a school board that sees and understands the future, not one that continues to look backward, continuing to move our schools and students backwards — because that is what has happened since the last election.

Know a family that deals with autism? Know a teacher who struggles with knowing how to provide a quality educational day in the life of an autistic child? Know a friend who has a friend who knows a family or a teacher, or a child?  Yes, you do.

Today, on World Autism Awareness Day, let’s focus on our community — our neighbors and our schools — and begin the task of moving away from “special education” and focus on an equal and quality education for our very diverse population.

Could we actually be an impetus for change?  Could we quit fighting a family who has struggled to bring awareness to the problem and work together?  It would be nice.

One of the issues with creating a group like a Special Education PTA is that because of FERPA, schools can’t just hand you a list of all the parents with children who have special needs and receive special education services from the school disctrict.  As a result, it is inevitable that some parents and guardians of children with IEPs in the Orange County school district will fall through the cracks and not know that there is actually an organization created to help and support them.   I’m hoping that if you are one of those parents/grandparents/guardians  For more information about the Orange County SEPTA, you can visit its website at http://orangencsepta.org/.

Being that we are in the midst of School Board Election campaigns, the Orange County SEPTA’s next general meeting will be a Candidate forum.  Below, I have included an email (in its entirety) from the OC SEPTA President.  This is a great organization and I’m glad to be part of it.  If you have a child in Orange County schools who recieves services from the exceptional children’s division I encourage you to get involved in SEPTA.

Orange County SEPTA invites you to join us on April 22, 2010, 6:00 p.m. at Hillsborough Elementary.

School Board Candidates will discuss special education and address questions of interest to parents of children with special needs.

April 22, 2010
WHERE: Hillsborough Elementary
WHEN: April 22, 2010
TIME: 6:00 p.m.

************************************************************************************
Upcoming Events

April 8th – 12:30- OCSEPTA Board Meeting (Open) – Hillsborough Public Library, W. Margaret Street

April 22nd – 6:00pm -General Membership Meeting  – Hillsborough Elementary School, Union Street

May 6th – 8:30am –OCSEPTA Board Meeting (Open) – Weaver Street, N. Churton Street

May 20th – 6:30pm – OC SEPTA General Elections – A.L. Stanback Middle School, Story Lane, New 86

Also, we have formed a google group for everyone interested in getting updates and information. If you would like to be part of the google group please email [Pam] @ pamscism [at] aol [dot] com.

Thank you,
Pam Scism 

 

we were in the middle of a due process hearing.

it’s been a long and often challenging year for our family.  though i think we’ve become stronger and more united because of it.

For some unexplained reason I’m spending my free time reading the hearing transcript…on one hand the whole process of reliving the hearing through the written word feels like a self-imposed punishment and yet on the other hand it’s like a rare treat that gets me giddy with excitement.

********

This weekend I met a perfect stranger who knew about the case and even brought it up to a group of people without knowing that I was in the audience.  When he found out that I was sitting among the individuals with whom he was talking his first words were “Oh Hi. How’s Owen?”  He knew all about the case because he’s read this blog and the documents I have posted.  He didn’t want to know about how the case was going.  He wanted to know how Owen was doing.  Yes, Owen — that little boy, my little boy.

This brief exchange about Owen made me realize that I don’t actually write much about him. I’m not sure why i don’t but would surmise that it has something to do with the difficulty I find in capturing him with words. (I have the same problem when trying to write about my daughter.) I’m going to make a concerted effort to write more about Owen from now on…try to give you a better sense of who he is and what we are all about.  For now, I’ll tell you that he is doing really well and everything is on track for him to enter into a mainstream kindergarten class with the rest of his peers. We face our challenging days when I would give anything not to have a child with autism and we have our delightful days when I almost forget that I have a child with autism.  I have a love-hate relationship with a lot of things, autism is one of them, Owen is not.  There is only love for that little boy, perfect the way he is.

**********

back to the transcripts.  it’s almost my turn to take the stand.

I’ve finally posted the latest court documents to the site — the most recently filed documents can be found under the court document page or by clicking the links below.  The first two are just a continuation of the ongoing pleadings that have been filed in federal court (which, I’ve been told, are now closed) while the last two are the most recent documents and have been filed by the Orange County School Board requesting that the Judge rule that the State of North Carolina and the State Board of Education should be named as defendants in this case.  

And in no particular order, aside from how my brain decides to spit them out, here are some tips (and resources) for parents heading into IEP meetings.

Learn IEP speak.  When I worked for the federal government, people called all the acronyms that were thrown around “alphabet soup.” Special Education has its own alphabet soup.  To be able to keep up at the meeting and know what the school folks are talking about, it’s very important that you have at least the basics down.  You’re going to hear, no doubt about it, the local school district referred to as an LEA, and the chair of the meeting will be the LEA representative who works for the EC (exceptional children’s) division.  In North Carolina you’ll hear forms being referred to as DEC4 or DEC5.  You will hear people talk about FAPE and LRE and IDEA.  You may have SLPs talking to OTs about RtI.  Your child may be found eligible under AU or OHI.  To get you started, here are a few good links:  Education Acronyms from NC Department of Public Instruction,  here’s one from the Technical Assistance Alliance for Parent Centers that lists acronyms along with brief description of the law that you can print out and bring along with you to your meeting.   BUT not everything conveniently comes in neat 3 to 4 letter packages.  For a broader list of terminology used in special education, I suggest checking out this glossary at LDonline.org.

Know both your child’s rights and your own.  Under the law both parents of a child with disabilities and the child with a disability are given certain rights and protections. The educational rights of students with disabilities and their parents are spelled out in IDEA 2004, NCLB, FERPA and Section 504.   Trying to read the actual statues and regulations can be a bit overwhelming (I know, I’ve read a lot of them!) so I”d suggest reading summaries, such as this one from the Duke Children’s Law Clinic to get started.      

Understand the IEP process.  evaluation, eligibility, IEP development, placement, progress, etc.  A good place to start would be with The National Dissemination Center for Children with Disabilities’ Short-and-Sweet IEP overview.  For those of you who like flow charts, check out this Overview for Parents on the Special Education Process.   

Audio record everything.  I read this somewhere before my first IEP meeting.  I already had a small digital audio recorder from a previous project, so I figured that there would be no harm in  taping the meeting.  Who knew it would be key evidence in our due process case. When the school’s attorney tried to point to the meeting minutes as an accurate account of what went on at every meeting our attorney simply stated that we have recordings of those meetings and that the most accurate account would be the audio.  At the hearing, when the school’s attorney claimed that the district’s staff was forthcoming with information and answered our questions, we simply played the audio of the meeting where I asked the same question 10 times and the only answer we got was “it’s all in here, in the IEP.”   But there are other reasons for audio recording beside the fact that you may eventually need them for a hearing.  They are a useful learning tool — I like to go over and listen to what happened in the meetings a day or two later.  I learn a lot from how I asked questions and how I responded to questions asked of me.  The recording also allows me to go back and see what I may have missed, review what requests were made, questions were asked, and whether or not I need to follow-up on anything.

bring a copy of your districts/states IEP forms with you.  If you live in NC go here and review all of the forms. Print out a copy of the main IEP form (in NC, it’s the DEC 4 IEP) and bring it with you.  The reason I make this suggestion is because during one of our initial meetings where we were developing Owen’s IEP the chair of the meeting had a set of forms and was using them to structure the meeting and ask questions, etc. We did not have these forms and were not offered a copy.  At one point I was so lost with regards to where we were in the process — goals, placement, and present level of performance — that I had to stop and ask her to go over the steps.  Eventually she came down to my end of the table and showed me where we were on the forms and that helped a bit, but having the forms from the beginning would have been better.  There is a reason that the forms are set up the way they are — they will help keep you all on track. 

Dress professionally.  I go into IEP meetings as if they are business meetings and therefore I dress as if I was going to a business meeting.  I’m not saying that you have to wear a suit.  But I also wouldn’t recommend running straight from the gym to a meeting.  Presentation and impressions are important – you want to be taken seriously and you want others around that table to listen to what you have to say.   

Bring with you all evaluations, reports, letters of support or anything that you think you may need.  Even if you have already presented the LEA with private evaluations, progress reports, doctor’s notes, bring them with you to each meeting.  Things often have a way of not making it into files.  That way if you need to refer to a particular document you’ll have a copy and can offer it to the others to review if they’d like. 

Smile.  While at times IEP meetings can seem more painful than a root canal, it is important to remain calm, cool and collected.  I’ve cried and have even raised my voice at one meeting but I’ve learned.  People are always telling me to smile more and I never listen.  But I’m asking you to listen to me on this one and I also offer up the following reasons why:  smiling relieves stress, lowers your blood pressure, releases endorphins and serotonin into your bloodstream, and helps you to stay positive.

If you don’t understand something, ask for an explanation.  It’s amazing how we tend to forget to do this as adults.  When my 7-year-old doesn’t understand something she has no problems speaking up and asking for someone to explain it to her.  I like to remind myself that there are no stupid questions, especially when it comes to understanding the IEP process.  In order to be a meaningful participant in the development of your child’s IEP and to make informed decisions, it is imperative that you understand both the information and processes by which decisions are being made.  So don’t be shy.

You can stop the meeting at any time and ask to schedule another meeting.  Rome wasn’t built in a day nor was Owen’s latest IEP.  You may not be able to get through everything you need to in one meeting without rushing through and that’s OKAY.  There is no law that says that you have to write an entire IEP in one meeting and you shouldn’t feel that way or be made to feel that way.   

…to be continued

phenomenal is not a word that I would use to describe myself.   It’s not even a word I”m comfortable having someone use to describe me.  So a few days ago when I received an email from a pretty phenomenal woman herself that started off  You are a “Phenomenal Woman”  and I enjoyed the privileged of meeting and telling you how much I admire and appreciate your willingness to share your story I had a really hard time understanding what this meantThis is following being called “a hero” by this same individual when she found me at a get together for current and former Partners in Policymaking participants.  “Hero” is a noun that I don’t think I would ever use to describe myself.  I was taken back by her statements, completely unsure how to react — do I cry?  do I challenge her assertion?  to I say a simple thank you?  do I hug her?  I think I’ve done all of these things and then some since last saturday.  My favorite reaction being that I told her I was going to take her home with me so that when my confidence was shot, when I didn’t see the point of fighting anymore and I wanted to give up, I’d have her there to give me a boost and remind me of why I keep fighting, why I don’t give up, and that what I’m doing is helping others.  She helps others too, as an advocate for special education, as a mother with a child on the autism spectrum, as a warrior and fighter, she’s rather phenomenal herself.

I met a lot of phenomenal people this weekend at the first training weekend for the 2010 class of NC Partners in Policymaking, some of them parents of children with developmental disabilities, some who have disabilities themselves and some, who without even a family connection to someone with a disability, fight tirelessly for the civil rights of this group of individuals.  One of my classmates, Allison Davis wrote about this experience here so I’m not going to repeat what she’s already said so perfectly and urge you to read what she has shared.  A mother of three boys with autism who is writing a book for other parents about teaching strategies and sharing her experiences and knowledge, she’s also phenomenal.

There are a lot of phenomenal people out there who are fighting for the rights of individuals with disabilities.  If you are one of them, I say a HUGE thank you for doing what you do  — you are my inspiration.  If you know one of them, I ask you to tell them just how phenomenal they are because they may not realize it and it may make a difference for them to hear it. 

For me, being called phenomenal has reminded me why I fight.  Not because I strive to be phenomenal or amazing or anyone’s hero, but because it means that somewhere I helped someone (even if it’s just one person for one moment in time) to not give up their fight; that I was a motivating force and an inspiration.  It has reminded me of why I started this blog in the first place — to share with others our experiences with the schools and the courts — and has motivated me to find my voice again and start writing. (Which means that over the next few weeks, I’ll be updating this site with the latest court documents and finally putting together the timeline of events that has been in a perpetual state of construction.)

On my night stand sits a number of books that I have had since college.  Among them, and often always on top (it competes for this spot with Anna Quindlen’s A Short Guide to a Happy Life), is a small black book with teal and pink on the cover.  It’s the book Phenomenal Woman by Maya Angelou. 

Now you understand
Just why my head’s not bowed.
I don’t shout or jump about
Or have to talk real loud.
When you see me passing
It ought to make you proud.
I say,
It’s in the click of my heels,
The bend of my hair,
the palm of my hand,
The need of my care,
‘Cause I’m a woman
Phenomenally.
Phenomenal woman,
That’s me. 

I’m still uncomfortable with being called phenomenal, but I’ll admit, it doesn’t hurt to hear it sometimes.

Very little surprises me these days when it comes to the Orange County School District.  This is particularly true when it comes to legal issues, policies and compliance.  The folks over at OCpearl posted the following yesterday  BOARD OF EDUCATION REFUSES TO RELEASE CLOSED SESSION MINUTES – and violates closed session state laws.  It’s time for concerned citizens to speak up and demand a transparent Board of Education that follows federal, state and local policies.

And for those of you who may doubt that Joe Q. Public should be allowed access to closed session minutes, North Carolina’s open meetings law, Chapter 143 of the General Statutes, requires that all meetings of state and local governmental bodies be open to the public unless there is a specific statutory exemption authorizing closure. And even when an exemption exists, the public body holding the meeting is required, by law, to keep “full and accurate” minutes that provide a “general account” to let a person who wasn’t there “have a reasonable understanding of what transpired.” In addition, the board must must make those minutes available for public inspection.  More information on Open Meetings Law in NC can be found here.

The National Autism Center has recently made available, online and for free, its comprehensive educator manual Evidence-Based Practice and Autism in the Schools: a guide to providing appropriate interventions to students with autism spectrum disorders. While intended for school staff, this is also an invaluable educational tool for parents and caregivers of school-aged children on the autism spectrum.  It is my opinion that parent education and training is essential in the treatment of developmental disabilities, such as autism spectrum disorders.  The more parents educate themselves on the therapies and interventions that are out there and have been shown to work, the more active and engaged they can become in the education of their own child and the development of their child’s educational plan.  

Parents…go forth and learn…and while your at it don’t forget to brush up on your child’s (and your own rights for that matter) under IDEA.  I’d start with http://www.wrightslaw.com for that.

This is the kind of thing I get excited about, seriously.

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