After doing many searches for an internship around the United States, I decided that I should at least try for one in New Zealand. Well, not only did I find internships, but I also found a program that will place you with an internship in your field at the location of your choice. If they cannot place you, they will refund all of your money. It is through a University, so it has college credit (something I need for my major!), and gives me reassurance that it is not a rip off. The programs is called IEP (International Education Programs), and I will be applying for an internship as soon as I can create a professional cover letter! I am going to talk with the head of the Design department tomorrow to see if he will approve this internship so I can receive credits. Wish me luck! I hope he does!

For those interested, IEP does study and volunteer abroad programs as well.

Having a stressful childhood may slash decades off a person’s life, researchers from the Centers for Disease Control and Prevention (CDC) report.

Among people who reported experiencing at least six of eight different bad childhood experiences-from frequent verbal abuse to living with a mentally ill person-average age at death was about 61, compared to 79 for people who didn’t have any of these experiences as children, the researchers found.

Dr. David W. Brown and Dr. Robert Anda of the CDC and colleagues from the CDC and Kaiser Permanente have been following 17,337 men and women who visited the health plan between 1995 and 1997 to investigate the relationship between bad childhood experiences and health.

So far, Anda noted in an interview, they have shown links between childhood stressors and heart disease, lung disease, liver disease and other conditions. “The strength of it really surprised me, how powerfully it’s related to health,” the researcher said.

In the current analysis, the researchers reviewed death records through 2006 to investigate whether these experiences might also relate to mortality. During that time, 1,539 study participants died.

Each person was asked whether they had any of eight different categories of such experiences, including verbal abuse, physical abuse, sexual abuse with physical contact, having a battered mother, having a substance-abusing person in the household, having a mentally ill person in the household, having a household member who was incarcerated, or having one’s parents separate or divorce.

Sixty-nine percent of the study participants who were younger than 65 reported at least one of the adverse childhood experiences, while 53 percent of people 65 and older did.

Those who reporting experiencing six or more were 1.5 times more likely to die during follow-up than those who reported none, the researchers found. They were 1.7 times as likely to die at age 75 or younger, and nearly 2.4 times as likely to die at or before age 65.

There are a number of ways that a traumatic childhood could contribute to ill health, Anda noted. For example, childhood stress affects brain development, so individuals who’ve experienced it may be more likely to suffer from depression and anxiety, and more prone to deal with stress in unhealthy ways, for example by drinking alcohol or smoking cigarettes.

Just a third of the people in the study were completely free of any sort of childhood trauma, Anda added, making it clear that these sorts of harmful experiences are widespread.

“If we want to address a lot of major public health issues we’ve got to address the kind of stressors children have in our society as a way of primary prevention,” he said.

SOURCE: American Journal of Preventive Medicine, November 2009.

Having a stressful childhood can significantly reduce people’s life expectancy. Researchers from the U.S. Centers for Disease Control and the Kaiser Permanente Organisation studied 17,337 men and women to investigate the links between bad childhood experiences and health. The researchers defined eight different adverse childhood experiences: verbal abuse, physical abuse, sexual abuse with physical contact, having a battered mother, having a substance-abusing person in the household, having a mentally ill person in the household, having a household member who was incarcerated, or having one’s parents separate or divorce. 69% of the study participants under the age of 65 reported at least one of these experiences while 53% of those over 65 did. Those people who reported six or more adverse experiences were 1.7 times more likely to die at 75 or younger and 2.4 times more likely to die at 65 or younger. The authors of the study thought that having a troubled childhood makes people more likely to develop anxiety and depression which they cope with by using tobacco and alcohol.

My wife saw the title of this post and said “You are getting old and crotchety.” 

I have found the SPED community online and in the blogosphere is much more in tune with Special Education law, why an IEP is important and what makes a quality IEP, whether they are parents, educators or other interested professionals.  The online community also appears to be much more aware and involved with their student’s education than the average parent or educator of a Special Education student.  So while the SPED community online is very knowledgeable and vocal, it is my experience that unfortunately they/we are not the majority.

Often we tend get into “we squeak” mode where everyone is saying something to simply say it and that what said is politically correct instead of being bluntly honest.  Even this post is not bluntly honest, just honest, I am a practicing educator and don’t want to go down that road and have chosen tact over bluntness.

The Individual Education Plan or IEP as most everyone calls it, is the supposed foundation for Special Education services that our students receive.  Below is the first paragraph from the guidance provided in Department of Education’s A Guide to the Individualized Education Program

Each public school child who receives special education and related services must have an Individualized Education Program (IEP). Each IEP must be designed for one student and must be a truly individualized document. The IEP creates an opportunity for teachers, parents, school administrators, related services personnel, and students (when appropriate) to work together to improve educational results for children with disabilities. The IEP is the cornerstone of a quality education for each child with a disability.

This is great in theory, but what is the reality?  In my opinion reality is something vastly different than what is in that very carefully crafted paragraph.

When I was the parent of a Special Education student, we would have the PET, then the Special Education Teacher would develop the IEP and then send a completed copy home – this was the procedure in the 5 different states that my daughter attended school in.  The only time I would look at it was when there were issues at the school, otherwise it sat in what came to be a 4 inch thick file that contained all of the Special Education paperwork generated by the schools and me.

I became a Special Education teacher in 2002 and have prepared several hundred IEPs.  Each IEP takes between 2-6 hours to complete dependent upon the nature of the disability, services needed and many other factors.  During this time I sincerely wonder how many times someone has actually read them beyond the Special Education Director – who wanted to ensure I did it correctly.  I don’t believe that too many other educators, ever bothered to read them, even though I emailed each approved IEP to all the student’s teachers or provided them a hard copy if they didn’t “use” the computer.

Goals and objectives in most IEPs are a joke, they to me are useless and are almost always written to be easily met and therefore make the IEP successful – where is the incentive to stretch a student, when we will be penalized for them not meeting their goals?  Most goals as written (they have become formula goals with statistics changing from student to student to be individual) do not have any bearing on how the student will be educated.  If the goals was met, it does not mean the student’s progress was a result of the Specially Designed Education Program, it could be any variety of factors from a change in medications to something as simple as the student maturing a little bit or the goals were so low, that the student had to meet them or already had when the IEP was written.

I have seen IEPs come to my schools with obvious and glaring mistakes, goals and objectives that don’t mean anything, transition plans that could make you puke, yet neither the parent or the other school thought enough about correcting it to take the time to do so or even worse didn’t realize that they needed to.

All the regs, books and experts say that the IEP shall be completed by the PET – that is a crock of crap.   Who actually completes the IEP – is the Special Education teacher/case manager 90% of the time without  input from anyone else.  They prepare the IEP from the notes they take at the meeting and their interpretation of those notes, with it being reviewed by a school administrator or administrative assistant and then mailed off to the parent.  Does the IEP reflect the PET’s wishes for the student?  Most of the time fairly well, but it does leave a lot of responsibility in the hands of the Special Educator who actually is preparing the IEP and there is quite a margin for error in the preparation.

I am going to stereotype for effect here.
The parent (if they showed up at the PET – many don’t) may or may not glance at the work done by the Special Educator and put it in a pile someplace or just throw it in the trash.

Other parents have a very negative history with schools either from when they were students or as parents and are are sometimes too intimidated by the school to say anything and just let the schools go along their merry way on how to educate their son or daughter whether it is working or not or this is usually when the lawyers get involved and everyone digs their heels in, in order to be right.

More stereotyping. At the school after the IEP is approved, it is usually put into a caseload notebook/file and the student’s special education file never to be seen until the quarterly reviews or the annual review.  In some  places – the Special Educator takes it upon themselves to email it to all of the student’s teachers or post it on the school’s “secure” database so that the classroom teachers can review the IEP.  I wonder how many classroom teachers take the time to review the IEP when they get it?

Most will say time and numbers make it impossible for them do it, for all the students, but they might look at a student who is having difficulty in their classroom.  The more likely scenario will have the classroom teacher complain to the Special Educator that “their” student is causing “problems” in their classroom and they want you to fix it.

Stereotyping done

For the most part, it has been my experience that no one really reads the IEP, unless there is a contentious issue surrounding the services being rendered or some other “problem” that needs to be resolved.  Most of the time the IEP  is only a procedural item that must be completed and in the file no matter how onerous or far away from what is actually happening in the classroom or at home.

This is too bad, because I honestly believe that the laws requiring an IEP and the different sections, were put in place with the best of intentions – to help ensure that Special Education student receive the services they are entitled to and should receive.  But it seems a little bit daunting that a blank IEP in the State of Maine (with no student data in it) is 9 pages long.  A blank form this long is a bit ridiculous.

The IEP has become a Lawyer’s document to show adherence to the law, not an educator’s document which develops and implements an educational program.  So in reality what use is an IEP other than to cover a school district’s butt in a legal argument or to prove that they did not provide FAPE from a parent’s perspective?  To me IEPs have devolved into a useless document that have to be completed due to regulation and law, not because they are beneficial to the student.

For the 80-90% of school/parent relationships that don’t require the legalese in the IEP, couldn’t we go to an IEP short form?  When there are disputes then we could go to the full protection IEP.  It would certainly save a few trees.

But that would require something called trust between the parents and the school and in some places that seems to be in short supply.  Unfortunately, too many schools have not kept their part of the bargain and not properly educated students and then many parents have had unrealistic expectations of what a FAPE is.  So you have the system that is in place today – a paperwok nightmare created by a mismash of confusing rules and regulations created by Federal and State (Congress, Legislatures or Regulatory agencies) then interpreted by the Courts.  This mishmash of unrelated but still pertinent laws, regulation and case law has created a system that works (sort of ) inspite of itself.  It is confusing, contradictory at times, duplication of intended results and only mostly understood – hopefully by the Judges who decide the cases and the Lawyers, who defend their clients – whichever side they happen to represent.

I have become rather jaded about the usefulness of an IEP, in my opinion IEPs have become little more than a paperwork exercise that are prepared more for CYA and legal purposes than for student educational support.  IEPs are not a living document that accurately reflects a student’s actual educational program and provide very little actual value added to a Special Education student’s individual education program.

I know many out there won’t agree with me, but that is what is so great about blogging — we don’t have to agree, but we get to see how others believe and usually do so fairly respectfully.

However, I will stand by my title – IEPs – what a waste of time and will add in there has to be a better way – now to find it.

As always – do the right thing for the right reason – today and everyday and remember its about the kids, not you or me.

Alright, you have done your prep work, research, and you are ready to sit down with your child’s IEP team and find the supports that will make your child successful. I’m going to start this with a list of “Dos” and “Don’ts.” If some of them seem like common sense then you are ahead of the game.

DO:

Dress Nicely
Remain Calm
Bring materials with you
Have your materials organized
Have outside OTs, PTs, SLPs and other experts attend the meeting
(If a couple) Sit on opposite sides of the table
(If single) Sit at the head of the table
Have a notepad handy and take notes

DON’T:

Dress like you are going to the gym afterward
Attack everything they team members say
Bring cookies, muffins or other snacks
Agree when told that your child doesn’t listen, sit still, etc.

First off, if you dress nicely they will take you more seriously. It seems elementary, but I have seen folks show up on clothes that looked like they had never been washed. I’m also going to give you a mantra to help you stay calm. “Whoever loses his/her temper loses the battle.” Its okay to be strong and firm, but yelling and screaming will derail all the positive work you have done in a second. If you have materials, bring them and make sure they are organized. Bring your child’s other therapists if they will attend. They can help you make a good case for your child receiving more services. You need to be able to see everyone’s faces to gauge reactions, thoughts, etc. As a couple you can do this most effectively by sitting on opposite sides of the table, and if single sit on the end.

You can’t attack everything people say and expect them to take you seriously, or even want to work with you. That’s the key to the IEP team. You have to get everyone on your child’s side. I’m not saying be a milquetoast, but respect everyone’s right to their opinion. You can change their minds later with the right tools. I’m going to capitalize and restate this one for you: DO NOT BRING COOKIES, MUFFINS OR OTHER SNACKS TO YOUR IEP MEETING! Some administrators may view it as a bribe, others may refuse on principle, but the main reason not to do it is because the IEP meeting is a business meeting, not a social event. The last one is a bit of a paradox, since I’ve told you not to attack everything they say. However, allowing people to have their say and agreeing with them are two different things. You can listen to them respectfully and still not nod your head or say “Yes I have seen that.”

The key, in my opinion, is to start the meeting positively. We are very friendly with our child’s IEP team. Typically it will start with a review of information, and this is a good time to present your child’s PLOP. Make sure it is entered in the IEP. This puts a positive view of your child right up front. Other people on the team will also add their observations at this point. This is a good thing. It starts the process that I like to call “puking.”

Working with our kids is hard. As parents, we know that. Just because it is hard, however, doesn’t mean it is impossible. However, in the beginning of the meeting I want you to listen. Be an active listener. Ask questions, make notes of rebuttals or ideas and show genuine interest. The puking can go on for over an hour, due to some weird group speak phenomenon I have witnessed. When the puking finally peters out, then and only then can you go to work. It may take a while. We have had IEP meetings lasting 3-4 hours. Don’t worry. Take all the time you need to make sure they are done puking all over the conference table, then you can start working on changing their attitude.

As an advocate, you have to be the catalyst. Since the people reading this probably don’t have a law degree, we have to figure out how to be catalysts in a positive way that makes people want to help us. The first part of that is listening. The second part is responding. Its tough to get through the puking without getting mad, but remember whoever loses his temper loses the battle. Remain calm, and make notes about how you will address these issues.

Your time to shine is when the team starts going through the modifications and supports. This is where you start asking for things, and when a team member objects using their “puke,” you simply use your notes to refute their argument. For example, one IEP meeting we attended, the consensus was that our son didn’t listen. We know that, as he has an auditory processing deficit. However, we had to let them puke that out for a good half hour. Once they were done my wife said “He has auditory processing deficits. He may not understand what you are asking him to do.” Then it was like a light bulb came on.

The real misconception with autism and autism spectrum disorders is that these kids are behavior problems. In fact, most kids on the spectrum have sensory issues and their “behavior problems” are due to overloaded sensoriums that lead to them acting out. This is the key point we need our IEP teams to understand and support. When they are puking, listen to the complaints. Are they complaining about behavior? If so, you should always put that back on them. “What was happening when he had this behavior?” “Who was in the room?” “What was the class doing?” The hope is that you can find what triggers and overloads your child’s senses and give him support then, because that’s when he needs it.

Okay, this one is long enough. Next up: What to do if things don’t work out at the table.

Copenhague C’est Aussi à Rennes.

le Samedi 5 Décembre, de 15h à 17h, place du Parlement.

Tournoi de Beach Volley Hivernal pour profiter de la hausse des températures ! Tournoi ouvert à tous, venez former vos équipes !

le Lundi 7 Décembre, à 18h30 à l’IEP, amphi Erasme. (prix libre)

Projection du film “The Age Of Stupid” suivi d’un débat. Un homme vivant seul dans le monde dévasté de 2055, et qui regarde de vieilles images télé datant de 2008 en se demandant : Pourquoi n’avons nous pas empêché le changement climatique tant que nous le pouvions ?

We spent about 20 min looking at old photos on the computer and some videos.  Most of them we looked at were either right before M was born or right after.  I’m seeing S through a different pair of eyes.  My goodness, she was round!  It’s funny looking back, especially the video, because you forget sometimes the essence of them back then.  Pictures just capture that moment.  But the video…oh my goodness.  I got teary just watching them.

S had dances for each of the musical pictures of this little Winnie the Pooh book.  She was showing them off.  Her chubby little legs bouncing around.  The round mullet haircut.  The proud smile she had when she finished.

S came out looking for our approval.  She made great eye contact.  She wanted to show us things, and would pull on our hands.  She would nod her head or say no to questions from a tv show.  She would try to tell us what things were.  Meh-wah for melon, sie-puh for Swiper, pwee-tee for pretty, etc.  We saw her coloring with one hand, shaking the other in the same motion when she colored, how she never crossed the midline of her body with her arms or legs, she always ran or jumped.

There are a lot of red flags I saw that I didn’t think were as off back then.  Seeing it now, the evidence is stark.  I’m so glad we got S help when we did.  But all this talk of S possibly having autism and other developmental disorders…there was plenty of evidence that ruled that out back then, too.  I finally can start putting to rest those doubts of what I missed or what others could be wrong about back then.  Maybe she is, maybe she isn’t….who knows.  But here are HOURS of different things that tell their own story.

Sometimes we really do have to go back to our instincts.  I can’t change whatever has happened or been missed, if anything, years ago.  I did what I thought we needed to do at that time, given the information we had at hand.  I really don’t think things could have changed for us back then.  I honestly don’t.  S should have gotten early intervention much sooner.  I should have consulted a speech pathologist long before we did.  But again, based on the information we had, our situation then, I don’t believe it could have been any different.  Looking at these videos, it only reaffirms that.

I am breaking my own rules on using the SPED acronym, but it just goes with my views on Special Education paperwork.  Necessary to use or do, but not anything I really like.

Last night I did a post on my belief that Special Educators = Paralegals due to the amount of paperwork work that we do that has legal implications.  Today I wanted to take a quick look at the paperwork that we are required to know and prepare. 

Each one of the primary forms deserve their own post will get one later on.

Here is the list of documents that we have to prepare in Maine and each one is a legal document mandated by the State DOE.

  Please click on the above image to go to the Maine Department of Education website to view the forms.

This is just a quick look at the Special Education forms, these 9 forms might not look like much on the above image but completing each one these takes time.

Advance Written Notice:  The form itself does not take very long to complete, but arranging a meeting with times/dates that all can attend is  time consuming.

The Written Notice (which has to be completed within 3 days of the PET).  Depends on the depth and breadth of the meeting – anywhere from half an hour to 3 hours.

IEP (which is 9 pages without any data in it) It is supposed to be developed at the PET, but often the Special Education teacher takes the notes and then prepares the IEP, which typically takes between 2 – 6 hours to complete.  The actual amount of time is dependent upon the complexity of the services to be provided to the student and who is reviewing it. 

Pet peeve, I hate landscape documents and whoever thought up the idea that the State-wide IEP document should be landscape should have to go before a hearing officer every week, to explain their thinking until they change them to portrait, they are just so damn hard to read – especially when copied 2-sided.  My opinion and I will stand by it.

The other documents are ancillary and while legal documents – don’t usually take very long to complete.

I know that most of the information is actually necessary in order to meet legal requirements (I hope it is the absolute minimum necessary), but there does appear to be a lot CYA information for the schools in the Written Notice and IEPs. 

While it appears that the time demands for each document isn’t that bad, multiply it times the number of students on the caseload and add in a Special Educator’s teaching duties – time is an issue. 

We are still required to submit lesson plans for each class, document individualization of instruction where applicable, prepare the lesson, download blocked information at home for the next day’s lesson, manage the classroom when the students don’t want to be there (most of the time), correct papers, provide feedback to the students and put the grades into a database of some sort.

Then you have to communicate with parents, administrators and everyone else.  Time management skills are a must and an understanding family who understand that when school is in session, you are in school mode (nights and weekends are at least partially given over to school work).

This was a quick look at the paperwork requirements.  I guess those who are smarter and more experienced than me in Special Education Law believe that this is the minimum required to protect everyone. But there does seem to be a lot of CYA involved in all this paperwork.

The paperwork we do in Special Education is the least fulfilling (to me at least) and most stressful part of being a Special Education Teacher and I think that a great majority of us will agree with that statement. 

It has gotten to the point where we prepare legal documents and many Special Education Teachers and sometimes our administrators don’t really realize the importance or consequences of poorly prepared paperwork, until it is in the hands of a lawyer for either side. 

Please read the Special Ed Law Blog by Jen Laviano, to get an idea of the quality of what you could be facing if a parent decides that they need to go down this route.  She is very, very good and I know that I wouldn’t want to meet her in an adversarial position unless I have my ducks completely in a row.

Her blog provides a wealth of information for anyone interested in Special Education and on what a Special Educator could face if you end up in a hearing or court.  There is plenty of free advice on what to “not” to do.  My suggestion is that you subscribe to her blog and read it, it could save you a lot grief later. 

A simple word of warning – if your paperwork sucks, you loose.

Basically a Special Educator is preparing paperwork that establishes and documents to the legal system what Special Education Services a student will receive and how the school arrived at those determinations.  This paperwork is also used to show that the school has followed the requirements of IDEA, Section 504, State Regulations, FAPE and to document any agreements or disagreements that have been made during PETs, mediations, hearing or other legally enforceable meetings.  This is actually a good thing and protects both the school and student when it is done correctly and in good faith.

I have been on the other side when a school violated my daughter’s rights and nothing is more unreasonable than a parent who believes their child’s rights are being violated in bad faith.  I know I was not very nice to the school during this period.  I never went to hearing, but it was not a pleasant experience for the school personnel who did that.

The fact that anything that I/we write (my notes – yes that includes your personal notes, notices, IEPs, etc.) are all subject to legal review is rather daunting. This is the part of this job that I don’t enjoy at all and gets me all stressed out when I am preparing my paperwork – I know how important it is to do it right – but even then I can make a mistake that could come back to haunt me at a hearing or in Court.  Especially when your work is being reviewed by a lawyer, who is trained to pick apart documents for weaknesses.

Special Educators typically only take a single Special Education Law class during their teacher preparation coursework and a quick 4-6 hour conference on What’s new in Special Education Law once every 2-3 years.  We are expected to be experts in Special Education’s legal paperwork preparation by picking up the knowledge we need from either experience or by the seat of our pants. Formal or even sometimes informal teaching of how to prepare the paperwork in accordance with the law and regulation is difficult to find at best.

Is it no wonder that many Special Education  Teachers/Case Managers don’t understand how important each piece of paper they prepare is – legally until they have actually gone through the hearing process.  We simply are not taught to think this way (we are taught to be nurturing and supportive) and when the unthinkable happens – that our work is reviewed by the lawyers for both sides and we are asked to explain and justify what we have written.

The reality is that learning to the do paperwork correctly is a major part of a good Special Educator’s job. We have to be able to document, document, document everything and be able to justify – to a Hearing Officer/Judge if necessary, why we did it.

We usually are totally out of our league, even if we prepared the paperwork with the best of intentions.  That doesn’t meet the standard necessary when speaking in front of a Hearing Officer or a Judge – best intentions don’t matter, but what you did does.

So what can we as Special Educators do to protect our jobs and sanity?  The single best thing is to ensure that the lines of communication between home and school are open, honest, and realistic (don’t make agreements that cannot be kept).  This forestalls and alleviates many potential situations before they become legal issues. 

This is why I say that Special Education Teachers have become Paralegals to some extent.  That is a Paralegal’s job – preparation of paperwork/ casework that meets the Court’s standards, within the timelines required by law or  regulation.

Our employers value our ability to prepare Special Education paperwork that is legally correct, more than our abilities to teach the student in classroom.  I really think that this is unfortunate that paperwork, has become more important than teaching, but in today’s world that is how I see it and I think that many schools do as well. 

What are your thoughts on this…what have I missed, to me it is more important to get this subject out there, to get a discussion going and to try to get it right than to be right.

Do the right things for the right reasons – today and tomorrow.

I know that many people think they know what Special Education is…but what does the law actually say it is?  I tried to find the federal definition and after about 15 minutes of bouncing in the Dept of Ed.gov site, I got tired of looking there.  I now remember why so many people get so frustrated with the Department of Education site, it is still difficult to navigate.  I am relatively web savvy and know how to use search, so for me to be unable find something as simple as the definition of Special Education quickly and easily is disappointing.

Continuing my search I went to the State of Maine Department of Education’s site and within 3 minutes had a copy of the Maine State Special Education Regulations and the definition which I have copied below:

05-071 Chapter 101, Maine Unified Special Education Regulation page 11

“Special Education. Special education means specially designed instruction, at no cost to parents, to meet the unique needs of a child with a disability, including instruction conducted in the classroom, in the home, in hospitals and institutions, and in other settings; and instruction in physical education. Special education includes each of the following if the services otherwise meet the requirements of the first paragraph: speech-language pathology services, travel training, and vocational education. [34 CFR 300.39(a)] Special education does not include general education procedures that are a part of formal pre-referral procedure as elsewhere referenced in these rules.”

The Maine Regulations (which are taken from IDEA 2004) specifically discuss “Specially Designed Instruction” which are the basis for educating Special Education students.  I believe that it is important enough that we should all read it at least once:

“Special Instruction. Special instruction for children B-2 means instruction that includes:

A. The design of learning environments and activities that promote the child’s acquisition of skills in a variety of developmental areas, including cognitive processes and social interaction;
B. Curriculum planning, including the planned interaction of personnel, materials, and time and space, that leads to achieving the outcomes in the child’s individualized family service plan;
C. Providing families with information, skills, and support related to enhancing the skill development of the child; and
D. Working with the child to enhance the child’s development. [34 CFR 303.12(a)(13)]”

These two definitions are very important and provide a basis for a student-centered approach to educating the child.  When preparing an Individual Education Plan (IEP) for a student it is the needs of the student that should be considered first and foremost.  Sometimes that is forgotten or conveniently overlooked and instead the needs of the adults take precedence, whether it be the school district’s adults or the parents.

I have a feeling this is the first of many posts discussing the challenges facing us, when attempting to provide Special Education services as a student-centered process.

So what is my definition of Special Education:

“Special Education is a way to support and provide students socially and educationally, who have significant difficulty or cannot function in a general education classroom, an opportunity to learn and then show what they have learned in ways that meets their individual needs in a realistic manner.”

This may be a bit idealistic, unmeasureable, and holistic instead of specific, but sometimes we try to get too specific and take away the flexibility needed in the classroom to actually make progress.  I do believe strongly that we should provide educational opportunities to our disabled children.  They deserve this and we are morally and legally bound to provide them the opportunity to go as far as they can educationally, we cannot simply leave them on their own.

I know it is a rather a simplistic view of something that a multitude of words have attempted to describe before my feeble attempts to write about it, but it does come from the heart and is how I believe.

So another voice in the wilderness is not a bad thing.

12h04 – Essa Casa Tem História – Couto Pereira

– Sabe Como? – Carteira de Trabalho

– PR399 – Rio Negro

– Aqui é Assim – Patrimônio

– O Dono da Rua – Marechais

– Tá na Lei – Crimes na Internet

– Tempero da Terra – Pintado na Telha

– Sabe Como? – Farmácia Popular

– Onde Você Estava? – Homem na Lua

– O Dono da Rua – Rocha Pombo

13h05 – Resumo da Semana

13h30 – Mundo da Fotografia – Marcos Piffer: Paisagem do Mar

14h00 – Ciranda Cultural – Revista Joaquim

14h40 – Mundo da Alimentação – Churrasco à Gaúcha

15h05 – Mundo da Arte – O Artesão de Ilusões: Wesley Duke Lee

15h30 – Plano Geral – Bolsa Família

16h35 – Memória Política – Evandro Lins e Silva

17h35 – Reprise Resumo da Semana

18h00 – Essa Casa Tem História – Couto Pereira

– Sabe Como? – Carteira de Trabalho

– PR399 – Rio Negro

– Aqui é Assim – Patrimônio

– O Dono da Rua – Marechais

– Tá na Lei – Crimes na Internet

– Tempero da Terra – Pintado na Telha

– Sabe Como? – Farmácia Popular

– Onde Você Estava? – Homem na Lua

– O Dono da Rua – Rocha Pombo

19h00 – Ciranda Cultural – Revista Joaquim

19h40 – Essa Casa Tem História – Instituto de Educação

– Serviços Públicos – Defesa Civil

20h00 – Reprise Resumo da Semana

20h25 – Memória Política – Evandro Lins e Silva

21h30 – Plano Geral – Bolsa Família

22h30 – Onde Você Estava? – IMI 70

–Aqui é Assim – Pianista

– Essa Casa Tem História – Hotel Cataratas

23h05 – Assembleia em Debate – ONGs

– Perfil Parlamentar – Antônio Anibelli, Fernando Scanavaca, Antonio Belinati, Luciana Rafagnin

Every year that S has been in school, whenever I have entered the classroom, she looks at me and bursts into tears.  I’ve never been able to figure out exactly why.  I mean, I take the extra time to shower, comb my hair, wear clean jeans without holes, and an ironed top!  Come on!  People should be loving me!  I could have been a complete embarrassment, shown up in sweats, a hat, a shirt and sweatshirt, only to find out I probably had a hole in my knee or near the crotch!  Ok. well, I TRY not to do that in public.   But anyway, she cries.  Her very first year, she didn’t.  Starting S’s 2nd year of preschool she did.  All the way through last year.  The spring visitation for the pre-K, S was actually ok.  The Valentine’s Day party I volunteered for 2 months before that was disastrous.  Her teacher told me it was probably better that I didn’t participate in the classroom.  sniff sniff.  Over the summer, I left the park a little later than I intended when S was at camp there, and she went hysterical when she saw me.  She kept pulling my arm, saying she was ready to go home.   I know my kids can fear me, but this is a little overboard.

So, when I found out that parent visitation for the Kindergarten was in November, I honestly started to stress.  It was the beginning of the school year, so S is still in transition.  I’m all over the place this year with one in the AM, and one in school in the PM.  I just didn’t know what to expect.

I arranged S to go to school with our neighbor, which she was excited about.  I took M to a friend’s house for a playdate.  She asked me if I was just going to drop her off!  M is usually pretty attached.  So just to drop her off, and for her to ask me that…it was a big deal.  I got to S’s school, and walked with a bunch of parents down the hall.

The kids were sitting on the rug by the board when we came in.  There were a number of adult chairs along the backside of the classroom.  There were a number of parents in front of me.  I could see that S was looking through them for me.  As soon as we made eye contact, she lit up a huge smile and yelled, “Hi Mommy!”  It was so cute.  Her cheeks flushed with excitement.   I think.  Come to think of it, the room was stuffy hot!  But I’d like to think it was my presence.

The kids were so cute.  They said the pledge, and sang a flag song (One I remember learning in elementary school.  Do they still teach those songs?)  Someone did the calendar.  Someone else did the weather.  They did the attendance, counted the number of days they’ve been in school.  They read a rhyming book.  Then broke up into groups of 4 to play a rhyming memory game.  The whole time S was chewing her fingernails, and fidgety.  Every 30 seconds, she turned back to look at me.  She would smile and wave.  Then her teacher or the aide would get her attention back.

During this 1/2 hour she never once whimpered or frowned.  She never raised her hand to answer any questions.  She was called on twice and knew the answer.  I was at least a little relieved that she was paying attention enough to know.

When it was time to leave, S gave me a hug.  She asked me for a kiss and nose kisses, when we rub our noses together.  She asked me if she could come.  I reminded her it was Friday.  She was still going to have free choice time and Art today.  Her face broke out into a gigantic grin, and she said, “Oh Yeah!  Friday is my favorite day.  I can’t leave yet!  Bye Mommy.  Don’t forget to bring my sister!”

So cute.  What a major step S has taken forward this year.  So much more mature.  I hope it lasts.

How many times have we heard, “just give it some time, he/she will catch up”; or “there is not enough of a discrepancy between potential and achievement, so they won’t qualify for anything”; or how about this one, “we don’t really do anything until third grade, then we will begin to intervene”.  Huh?

There is a paradigm shift happening in education, and we all need to get on board.  It is not enough to wait until our students “catch-up” with their peers.  We do not want to wait until failure is the only option.  In fact, just the opposite is the ideal.  As was mentioned in an earlier post, the best policy is to screen early and intervene when necessary, as soon as possible.  The movement that addresses this issue is entitled “Response to Intervention” or RtI.

The basic premise behind RtI is simple.  Students are given a basic screening early in the school year, to identify strengths and weaknesses. This allows school-based teams to craft an approach to address the issues.

According to Dr. Marcia Invernizzi at The University of Virginia, in an address given at a statewide meeting in Newport News, she stated:

“Reading interventions should be ongoing and flexible.  The intensity of focus should be adjusted according to student’s response. Layers or tiers of intervention might move from:
*Enhanced classroom instruction, to
*Supplemental small-group instruction, to
*One-on-one individualized reading tutorials”

The great news is that PALS is now listed on the National Center for Response to Intervention’s website as an evidence-based screening tool.  It is in competitive standing with other screening tools such as DIBELS & AIMSWEB.

The small numbers of students who do not respond well to any interventions are considered to be at the top of the tiers, and are more carefully evaluated for possible referral to special education services.  The promise is that general education teachers will be able to accurately identify the problems and intervene early, before the problems lead to entrenched difficulties or referral to special education.

Let me preface this post with a deep breath.

The positive outcome was that the meeting ended and I went home. It wasn’t until the following morning that I woke up feeling like it must have been a bad joke. 

Autism.  Social and communication difficulties.  Emotional regulation.  Anxiety disorder.  Attention issues. 

The direct service providers NOT INVITED to the staffing: mental health providers and speech pathologists.  The district Autism specialist, not there. The administrator that has been in my corner since day one, not there either.  The fill-in admin was on his computer, probably checking email or even the latest scoreboard for that matter.

Communication needs written into IEP, oh an oversight.  Emotional regulation/mental health needs, oh yea another whoops.

I mentioned that there are over 1500 kids in the building, yet every teacher reported that she has minimal, if any, interactions with peers outside her tiny little special ed circle that typically includes a para.  BUT she is really good at showing the adults in the building her book.  Great.

I mentioned that she has eaten a chicken patty every day for lunch since August, NOT because she loves chicken patties, but because it requires NO communication.  You grab the plate and you go.  And even better, the lunch ladies that take the money “know her so she doesn’t even have to talk to them”. 

The elementary library job still hasn’t transpired. I reminded them that there are 3 other elementary schools within a 3 miles of the high school.  Maybe someone can call the other librarians?

Numbness. Bewilderment.  Exhaustion. 

All of that turned to outrage by morning. 

I guess the term ’compliance’ needs to be revisited, or rather ‘out of compliance’?

Another busy day here at UPA.  Can’t find my desk under all my projects that I am working on today.  Just finished making a big binder of stuff for Lisa for the Disney Thanksgiving Tour. Now on to going through some industry magazines, looking for mentions of UPA and IEP.  After that, going to make some calls, organize my desk a bit more and help Ann with a few miscellaneous projects.  Fun afternoon!

Good thing I have Pandora Radio [www.pandora.com] to keep me moving through the day.  If you use Pandora, I definitely suggest creating a Justin Timberlake station- upbeat music to make me dance around my desk

Okay, so you have your IEP meeting scheduled and the team is preparing to assemble. Now its time to get ready. Most school districts are not going to volunteer any services, so you need to be clear about what you need going in. If possible, include your spouse or partner, and talk about what supports your child will need.

Prior to the meeting you need to write a Present Level of Performance, or PLOP. This is your chance to say something good about your child. I was lucky enough to attend a wonderful class on writing a PLOP at our local Parent Resource Center. I learned a number of strategies for presenting my son’s challenges in a positive way. The real key, I have found, is to search for causes. For example, my son is very active. However, his activity level has 2 causes. One positive, his natural curiosity, and one negative, his sensory overload. So, in his PLOP, I characterize him as being curious but suggest support for his sensory overload. You can download my son’s PLOP if you need an example.

First you must establish goals. Typically goals will require some sort of baseline report showing a deficit. Most schools will offer to do an assessment. We have always shied away from this, as we feel that school personnel training is primarily geared toward educational deficits. Add to that the fact that they are not doctors, or at least not medical doctors and you can figure out why we have always tried to have evaluations and assessments done outside of the school system. Sometimes it has cost us extra money, as our insurance doesn’t cover everything. However, having documentation to back up your claims is often necessary to get the school system to do what is necessary for your child. The goals will be established at the table by the team. I mention it here because you will need to have any evaluations and assessments you want to share available for the IEP.

Goals will typically be centered around speech and language deficits, inabilities to function in the classroom or other issues specific to your child. Our IEP has 20 goals, and they range from simple language based goals to complex social goals. Try to have an idea going in of what goals you have for your child. Do you want him to speak appropriately at his current age? Do you want him to sit still in class for 30 minute increments without assistance? Do you want him to engage his peers in a typical fashion several times throughout the day? Goals are where you put that stuff into writing.

Let’s talk about supports. Asking for support is a very appropriate way to quantify your child’s needs. For example, saying “my son has autism” doesn’t mean anything to an IEP team. However, saying “My son needs support with his academics because he has difficulty understanding the teacher” gives the team a direction to go. I would actually recommend being even more specific. For example, our son has sensory needs, and when we asked for support we were very specific. His IEP reads “sensory breaks every 30-45 minutes.” The more specific you are the easier it will be to implement your child’s IEP, or, worst case, determine if it has not been implemented.

Common supports are:

Speech therapy
Occupational Therapy
Physical Therapy
Applied Behavioral Therapy
Assistive Technology

I have always felt that a kid with a speech delay needs speech therapy 5 days a week. We have 3 days of speech at the school and we had, until recently, 2 days of speech outside the school. Our son has sensory issues, so we do 1 day of OT in school and 2 outside of school. However, we also have OT consult time built in to his IEP so the OT can help make his environment more sensory friendly. We don’t do PT or ABA but know other families who do.

Assistive technology is tougher to get. Some kids who have severe language delays can qualify for an alphasmart, or other text based communication devices. Our son uses an FM device to help with his auditory processing delay. This is simply a pair of noise cancelling headphones plugged into a small receiver. His teacher wears the microphone, and it helps him isolate her voice from the rest of the background noise.

These are just some of the options available. Get out there and talk to other parents. Network and find out what is working for other kids, then incorporate what you think will work into your action plan. Next up: Sitting down at the table for the IEP.

A recent friend’s facebook status read:  

…is PISSED at his kindergarten teacher!… now they are trying to get him labeled IEP, more money for the public school, … already had him tested over summer and educationally speaking he is fine, I have the documentation! He is SO smart he shocks us!!He has other issueses from [an injury] but NONE having to due with intelligence

Só espero que a pressa para o metrô não transforme esta importante conquista para Curitiba em um jogo subterrâneo de picaretagem.

Daniel Pinheiro

—————————————————————————

O metrô volta para a pauta da Copa

Governo aceita reavaliar proposta após a ministra Dilma Rousseff descartar inclusão da obra no PAC do Mundial

Publicado em 11/11/2009 | André Gonçalves, correspondente, e Vinícius Boreki, da Redação

Fonte: Gazeta do Povo

Brasília e Curitiba – A apresentação de um projeto mais enxuto e o comprometimento com a conclusão dos trabalhos até o começo da Copa de 2014 mudaram o rumo das negociações entre a prefeitura de Curitiba e o governo federal sobre a construção do metrô. Após o banho de água fria provocado por declarações pessimistas da ministra da Casa Civil, Dilma Rousseff, as duas partes podem fechar um acordo sobre a obra até dezembro. Até lá, técnicos do município terão de provar que o sistema começará a funcionar dentro do prazo.

A proposta atual reduz de 22 para 13 quilômetros o tamanho da linha Norte-Sul. Ela restringe o trajeto original ao percurso entre o Terminal CIC/Sul e a Praça Eufrásio Correia, que conta com apenas 12 das 21 estações previstas. Apesar dos cortes, porém, uma nova estimativa do Instituto de Pesquisa e Planejamento Urbano de Curitiba (Ippuc) aponta que o empreendimento deve ficar 17% mais caro.

A expectativa era de que toda a obra custasse R$ 2 bilhões. Desse valor, R$ 1,2 bilhão seria aplicado apenas nos 13 quilômetros do trecho Sul. Agora, a quantia estimada para o trecho Sul saltou para R$ 1,44 bilhão.

“Acabamos de concluir uma investigação completa sobre o terreno em que vai ficar o metrô e descobrimos que será necessário aumentar o orçamento”, explicou o presidente do Ippuc, Cléver Almeida. Segundo ele, alguns trechos em que o sistema funcionará no subsolo precisarão ser até 50% mais profundos – vão passar de 8 para 12 metros abaixo do nível da rua.

Almeida, o prefeito Beto Richa e os ministros Márcio Fortes (Cidades), Orlando Silva (Esportes) e Paulo Bernardo (Planejamento) participaram ontem de uma reunião em Brasília sobre os investimentos de preparação de Curitiba para a Copa. “Nossa grande conquista foi resgatar essa discussão do metrô, que já estava praticamente fora dos planos do governo federal”, comemorou Richa.

As negociações ficaram tensas após Dilma Rousseff declarar que a obra não seria encaixada no Programa de Aceleração do Crescimento (PAC) da Mobilidade Urbana, que trata de projetos das cidades para o Mundial.

De acordo com Paulo Bernardo, a situação mudou com a conversa de ontem. “Nossa principal restrição era vincular o metrô à Copa e ele não ficar pronto até lá. Como eles (técnicos da prefeitura) estão assegurando que têm condições de fazer dentro do prazo, decidimos reavaliar.”

O sucesso do acordo, segundo o ministro, depende de um consenso entre as estimativas dos técnicos da prefeitura e os do governo. “Estamos enfrentando uma guerra de versões entre o pessoal que diz que vai ficar pronto e os que não acreditam que isso seja viável. Só que chegou a hora de batermos o martelo.” Do outro lado, Richa garante que não haverá problemas. “Trabalhamos com uma margem de segurança suficiente.”

A proposta do metrô curitibano é que o governo federal financie R$ 960 milhões (67%) do custo total. Os R$ 480 milhões restantes seriam investidos a partir de uma Parceria Público-Privada (PPP). Richa disse ontem que os estudos para a adoção da PPP foram encomendados à Fundação Instituto de Pesquisas Econômicas (Fipe) e devem ficar prontos até o fim do ano.

A linha de crédito junto ao governo federal já foi estabelecida pelo Banco Nacional de Desenvolvimento Econômico e Social. Os juros cobrados serão de 5,5% ao ano mais spread bancário (atualmente de 1,9% ao ano). A prefeitura teria uma carência de 48 meses para começar a pagar, dentro de um prazo total de 30 anos para quitar a dívida. Ou seja, se o município contrair a dívida, o responsável pelo início dos pagamentos será o prefeito eleito em 2012.

Avenida pode ficar sem as suas “torres”

A Avenida Comendador Franco, que liga o Aeroporto Afonso Pena a Curitiba, pode perder o apelido de “Avenida das Torres” até a Copa de 2014. A retirada das estruturas de alta tensão presentes em 18 quilômetros da via pode ser a principal novidade na lista de obras de preparação da cidade para o Mundial.

Veja a matéria completa

Proposta

Especialistas pedem bonde no aeroporto

A possível retirada das torres de alta tensão da Avenida Comendador Franco (veja ao lado) deve ser aproveitada para incrementar o transporte coletivo. Na opinião de especialistas, a oportunidade não pode ser desperdiçada somente com a ampliação da pista. É preciso planejar um novo modal de transporte público, responsável pela ligação entre o Aeroporto Afonso Pena e o centro de Curitiba. A sugestão pensada por dois especialistas consultados pela reportagem é um bonde sobre trilhos – elevado ou não. Esse novo meio de transporte seria interligado à Linha Verde, permitindo o deslocamento de quem está no aeroporto a qualquer ponto da Rede Integrada de Transportes.

“Há algumas facilidades: não é preciso escavar e já existe fonte de energia disponível (a eletricidade)”, opina Luiz Cláudio Mehl, engenheiro e membro do Conselho Consultivo do Instituto de Engenharia do Paraná (IEP). “Essa obra serviria para valorizar o trecho e auxiliaria na solução de problemas de ordem social”, defende o coordenador do curso de Arquitetura e Urbanismo da Universidade Positivo (UP), Orlando Pinto Ribeiro.

Pontos resolvidos

R$ 153 milhões para 3 obras garantidas

O governo federal deu a certeza ontem de que irá investir em pelo menos três projetos apresentados pela prefeitura de Curitiba como preparação para a Copa de 2014. As obras somam R$ 152,9 milhões. A prioridade é a melhoria do tráfego na Avenida Comendador Franco.

A outra, estimada em R$ 4,9 milhões, é a reforma da Avenida Cândido de Abreu, que será adaptada para receber uma linha de ônibus ligando o Museu Oscar Niemeyer ao aeroporto Afonso Pena. Por último, o governo federal ajudará no investimento de R$ 58 milhões em melhorias no sistema de sinalização do tráfego (como a sincronização dos semáforos).

Além do metrô, os ministros vão reavaliar outra proposta: o empreendimento de R$ 137 milhões prevê a construção de um corredor metropolitano entre Almirante Tamandaré, Araucária, Fazenda Rio Grande e São José dos Pinhais.

Outras três obras que haviam sido sugeridas em reuniões anteriores foram excluídas temporariamente dos planos. Segundo o ministro do Planejamento, Paulo Bernardo, ainda não há solução para o impasse do término da Arena da Baixada, avaliado em R$ 90 milhões.

So, I talked about how our day at Sesame Place was a fun, yet humbling experience for us.  We had another, but on a smaller scale.

The kids didn’t have school for a couple of days because NJ Teachers convene for workshops in Atlantic City for 2 days.  We weren’t able to coordinate apple picking with the family we have been going together with for years.  And it looked like we missed our shot.  I called an orchard and they said they still had apples yet.  So I took the kids.

It was cold and windy.  And there weren’t that many apples left.  But there were some.  The kids had fun on the hayrides, picking apples, and doing some of the activities there for the kids.  There was a huge hay stack they climbed, hay tunnels they crawled through, and a house full of corn kernels.  This was a huge sensory gratifying experience for S.  Both of them love to be in there, playing with it as if it was sand.  I could barely get them out.

Once S and M settled into the corn house, they each picked up a bucket.  There was a boy in there already playing.  He was a little taller than S, and he probably had 10-15 lbs on her.  His younger brother was coming out to go in the bounce house.  It looked like there was an older sister, probably around 12 there, too.  The boy wasn’t ready to come out yet, so his dad and sister took the younger brother and the mom stayed.  He got up and laid between my girls.  He speech almost had a swagger to it.  ”So, which bucket can I have.”  Of course, both my kids said, “Not this one.”  Before anyone could say or do anything, he got a little louder and said, “That’s not fair.  Well, if I can’t have one, I’m not moving.”

I was about to suggest to my kids to share one of the buckets, knowing full well that whoever gave it up was going to have a MASSIVE tantrum.  My kids had just gotten them.  Neither was going to give it up without a fight.  Before I could say anything, S said, “You can have mine when I’m done.  Maybe in about 10 min.”  I was so proud of her.  Well, it wasn’t flying for the boy.  He started yelling no.  Then M started to cry because he had been sitting on her foot and when he yelled, he was bouncing on it.

This boy clearly had some kind of special needs.  I’m no doctor.  But definitely something going on.  His mother started getting upset with him, telling him to leave my girls alone, that he’d have to come out if he didn’t listen to her.  She wanted him to move over to give them some space.  He eventually complied.  2 littler boys came in and when one of them started putzing with the dump truck, this boy went nuts.

Before I had S, even when I was a teacher, I am pretty sure what would have been going through my mind.  As educated as I thought I was about different needs or sensory issues, I really knew nothing.  And, I’m so ashamed to admit this, but I probably would have thought, “Dear God, please don’t give me a child like that.  Or please let me be a stronger mother than his is over there?!!”  You know what I’m talking about.  Before you have kids, you are so judgemental.  You can’t help it.  Once you start having kids, you start to realize it’s not all in your control.  Once you have 2, you see for yourself, they are night and day, no matter how similar you are raising them.

Now, I could see what the problem was.  He was rigid, and inflexible in this particular situation.  He thought he was being fair by asking which bucket he could have.  They probably work it out that way at home or in school.  My girls answer was unexpected, and he didn’t know how to deal with the new set of rules they just implied on him.  I’ve seen it happen with my own kids.  When an outside person doesn’t play by their established rules, it upsets the dynamics ten fold.  And with each new addition, it was making it more chaotic for him.  Then you have his mom, who is supposed to be on his side in his mind, start threatening to take him out, her own voice embarrassed and aggravated, well….it’s just a downward spiral.  Things were coming out of his ordered world, and it was unsettling.  He hasn’t figured out how to deal with that, yet. (Hell, I know plenty of adults who still are unraveled and crazy when things don’t get their way.  There’s therapy for them folk, too!)

The mother went to go grab him and pull him out.  He was kicking and thrashing.  I could see he was too heavy, too strong for her.  She had to leave him.  She didn’t have it in her, either, to make that scene.  I didn’t blame her.  She turned to me and said, “I try to have patience, but I don’t have any.  He has behavioral and emotional issues.  It’s hard for him to be out.”  I told her she didn’t owe me any explanations.  I actually thought he was fine and manageable most of the time.  The dynamic of the 2 didn’t seem to help.  But again, who am I to judge?  S and I are intense, and we can mentally and emotionally kick each other’s asses on any day.  The mom continued, and I just told her that I get it.  I really do.  Kids like things in their control and by their own rules.  When you are outside, in public, it all changes, creating stress, for everyone.  The more stress they feel, the more they are going to react.  She looked at me…stared actually.  ”You got a kid with issues?  Did you leave them at home to have an enjoyable day with your other 2?”  It took me a second to realize what she was talking about.  What was I supposed to say?

I am not one to divulge a lot of information to a stranger, either.  But I said, “My older daughter has special needs.”  The look in her eyes went from surprise, to a softening.  Then she glanced at S, and hardened.  ”She doesn’t seem to have any needs.  She’s totally normal in there.”  I hate that comparison.  I don’t mind it when people are complimenting you.  But this wasn’t one of those things.  It was a how can you compare yourself to me sort of take.  And I wasn’t really comparing.  I was just saying, hey, I understand it’s not easy.  All I could get out was, “Isn’t everyone different how they wear it.  Some let it all hang out, others may be more subtle.  That doesn’t make them all just fine and typical.”

She walked away from me in a huff.  No biggie.  We’ll probably never see each other again.

I was humbled again.  S has really made a ton of progress.  There will be good days and bad days.  She’s gotten so much better out lately, too.   All these “mystery trips” her neurologist told us to take, where we don’t tell her where we are going.  We just go and show up.  Always something fun.  That way, S realizes that we don’t have to know everything.  The unknown can be fun.  It’s helped tremendously, esp in these situations.

Wouldn’t you know it, but before we left, S took a pony ride there.  She has developed a real fear of dogs, and now cats.  Any living, moving animal, that is not caged, she is skittish about.  Huge move for her.  But she rode it and had fun!  Another milestone checked.

Is it acceptance or giving up to look at the reality of my child? 

Reality: She isn’t college bound.  She may not ever be able to work enough to support herself.  She may never be able to understand money or navigate a bus system to get from A to B.  She may not ever have the safety skills to navigate the community independently.

Acceptance is realizing these facts. Giving up would be to allow the next 4 years to be wasted worrying about obtaining high school credits and jumping through the meaningless  hoops of missing assignments and tests. 

Acceptance would be to advocate for IEP goals that address the core challenges of autism.  Giving up would be working on math concepts that are not functional.

Acceptance would be to recognize the extreme difficulty she has asking familiar people in her environment for help.  Or commenting on someone else’s topic of choice.  Or simply saying goodbye when she leaves.  Giving up would be to not see these as important.

I choose acceptance.  I choose to address the challenges.  I choose to fight the fight.  I choose to not give up  helping those in her school environment see the reality.

The reality is that she has autism.  The reality is she has limited intellectual functioning.  The reality is she has low adaptive skills.  The reality is she is amazing.  The reality is she has potential.  Potential to have success, defined by her learning style, her strengths and her being-ness.

Now that you have adjusted your attitude and underlying assumptions in preparation for the IEP meetings, you are ready to get down to the nitty gritty. This article suggests strategies and activities for successful outcomes and a third article will provide some tools for success.

Remember that you do not have to sign the IEP for it to go into effect – you DO have to object to it in writing for it not to go into effect. Especially if there is a possibility you may have a protracted period of either renegotiation or appeals and formal hearings, as the parent, first and best advocate for your child, it is best to stay organized.

I give three major pieces of advice to parents entering the IEP situation. They are

1. Pack the room. Be sure you are not alone in the meeting. If possible bring at least two other people with you, at least for moral support. It’s even better if you have a PCA, a tutor, an outside therapist, or a respite provider who knows your child well along.

2. Do your homework. Bring with you any relevant testing, physician notes, or other materials you have. Ask for paperwork in advance (though don’t be surprised if the school declines to provide it – they are busy and often finish paperwork right before meetings) and don’t be afraid to ask that the meeting be postponed or rescheduled if you feel you are being pressured to make a decision and need more time to review the paperwork.

3. Know where you are, what has worked before, what has not worked before, and what goals you (and your child, if they are over 14) have. If you don’t know where you have been and where you want to go, you are likely to end up somewhere else!

Pack the Room: Schools are accustomed to having large numbers of their personnel overwhelming a single parent or at most two, and it keeps them off guard. In one meeting with a preschool Special Ed team, we had five participants to their five, and I rarely had issues with the school district again.

As well as bringing your support and documentation team, “dress for success.” Wearing a dress, suit, or nice slacks not only helps you feel more confident and better about yourself, it shows the school members of the team that you take this endeavor as seriously as you would take a job or other professional engagement. It is far easier for school personnel to ignore a parent in sloppy sweats with messy hair than one who is dressed as professionally (or more professionally) than they are.

Do your Homework: First, prepare by reading the most recent IEP. Think about what seems to be working, what is not, and how your child has changed since it was written. Have any goals been accomplished? Have any needs changed? Do you know of any new applicable resources? Make lists of these, and try to keep related material and information together. Even if the resources are simple and straightforward, such as ergonomic tools, list them.

Don’t assume that the professionals know everything. I read a note from another parent in an Internet group about ergonomic, “Twist n Write” pencils. They worked really well for my son, increasing his control in writing immensely. So far I have shown ours to at least 2 Special Educators and 3 OTs (who you’d think would already be aware of the things) and none of them had seen this tool before. All the OTs announced an intention to go right out after school and buy some. Kind of makes you wonder what kind of marketing the pencil’s manufacturer is (or isn’t) doing, doesn’t it?

Now that you are aware of some strategies, the third article in this series will provide some tools you can use to clearly assess your current position and goals.

I cannot believe that 3 months since I last wrote. Where has the time gone???? Let me give a quick recap of all that has taken place.

School started in September and much to our hesitancy, it has gone terrific! He absolutely LOVES to go to school. He is so happy and so excited when I pull into the driveway. He is so bored ont he weekends with us, which makes me sad but happy at the same time. I am so glad he adjusted so nicely to the new surroundings. He is in the same school but now spends most of his time with strictly the special needs kids. This is where we were concerned but the change in him is so dramatic. I think he was actually overstimulated with the typical kids. The kids now, granted a lot cannot talk to him as they are non verbal,s till touch him and play with him and interact with him. There are 12 kids in the class and each child has a 1 on 1 aide. It’s so great. He is doing art projects now, and sitting for stories, he makes weather charts, he really is excelling in his therapies. I cannot talk enough about it.

Of course on the flip side is the struggles that we still have. Very little communication coming home so we know what he did during the day. We were only finding things out when we went to pick him up. So those issues just never seem to go away. And we STILL have issue with ST. She is supposed to see him 3 times a week for 30 minutes each session. She decided to piggy back on his OT time which is unacceptable. She claimed she didn’t have any other time in her schedule.

Next Friday, the 13th how ironic, is his IEP. We are calling her out that she needs her own time with him. His aide, lead teacher and our communication’s coordinator all agree. And I have it in an email that they agree so if someone says otherwise next week, I have proof of them agreeing with me.

But despite that, we are so happy and relieved to have him in the program that he is in. You can’t imagine the stress I had every day dropping him off. I would get sick to my stomach because of the tantrum he would throw. It pained me to leave him. But now, we sing, we laugh, he pushes me away when he is ready (which is fine as I know he is so happy). And his smile that he has when I leave just makes the whole morning happy!

Healthwise, he has been ok. He has suffered from a few colds since the start of school but nothing super serious. unfortunately yesterday it was announced that swine flu is in the building and I think particularly his class. When you have a room full of children sneezing and coughing and don’t understand at all to cover their mouths and noses, its bound to happen. So I am scrubbing everything daily and making him change his clothes as soon as he comes home. My parents are doing this as well. He cannot get the H1N1 shot due to his egg allergy. The shot is made with an egg base, similar to the regular flu shot, and he can’t get that. Not that we are able to get either shots right now with the shortages here. My mother, who is an RN, cannot even get it and she was supposed to. They only have enough to give to pregnant RN’s. She explained how she takes care of a high risk child and that still didn’t qualify her. It’s pretty scary. I am holding my breath but I don’t think we are going to escape it.

Other than that, things are ok. No major accomplishments but no major set backs. All is right in the Brunetti house.

Some parents feel ill-served on special-education concerns

By KARI ANDREN, The Patriot-News

November 03, 2009

Jennifer King envisions her son going off to college, having a career and maybe even getting married.

Those might sound like the average mother’s dreams for her son, but for the parent of a special-needs child, they can sound downright extraordinary.

“Everything will be his decision,” King said of her son’s future. “But I work very hard to not limit his own thoughts of his own potential.”

King is fighting the West Shore School District to keep her third-grade son, who has Down syndrome, in mainstream classrooms as much as possible.

When the district proposed transferring her son to a special-education classroom for two core academic subjects, King said she requested a meeting with school and district officials.

In the past, when she requested a meeting, no changes were implemented during the process of working out their differences, she said.

But this time, King found out her son’s classroom placement was changed before the meeting took place because she did not initiate mediation or file a due-process complaint to halt the changes.

So King helped organize a group of parents and supporters who co-signed a letter to the school board and attended the Oct. 15 board meeting.

In the letter, parents cited concerns over the process the district uses to change students’ Individualized Education Programs, the tailored blueprint for each student’s special needs and educational goals.

They contend that the district has become less willing to work with the parents of special-needs children when it proposes a change to the child’s program. They say parents’ steps if they disagree with the proposed changes — entering mediation or filing a due-process complaint — are burdensome for families.

But to King, it’s worth fighting to keep her son in the mainstream classroom so he has a better chance of being independent and successful later in life.

According to the U.S. Department of Education, students with disabilities who spend 75 percent or more of their high school education in regular classrooms are five times more likely to be employed — and make more money — after leaving school than students who spend 25 percent or less of their high school time in those same classrooms.

District spokeswoman Crista DeGregorio would not comment on the letter to the school board.

Rosemary Holecki, special-education coordinator for the district, did not return a call seeking an explanation of the district’s Individualized Education Program procedures.

This is not the first time the district has run into problems with parents over students’ educational plans.

In December, the district agreed to pay up to $16,000 to two families — $3,500 to one and $12,500 to the other — to compensate them for “education-related expenses” related to disagreements about the course of the students’ education plans.

The families were unhappy with what the district was proposing for the students.

Kathy Brill, president of the Pennsylvania chapter of TASH, a nonprofit disability rights advocacy group, said it’s up to each school district to establish smooth working relationships in these cases.

“It depends upon the administration of the school district,” Brill said. “They have a huge role in the environment and attitude that runs throughout the school. When they don’t show that type of leadership, all sorts of things can break down.”

Parents express a variety of frustrations with special-education issues in the district beyond just classroom placement, but many are united in feeling that the working relationship between parents and school officials has deteriorated.

Some want their child placed in mainstream classrooms, while others want their child in classes taught only for children with special needs.

But the parents are united by feelings that concerns are brushed aside or that the district stalls in remedying their complaints.

Michele Gibb said parts of her son’s educational plan were not followed last year and that the district’s unresponsiveness to her concerns ultimately contributed to her son’s failing ninth grade.

Gibb said Eli, who has attention-deficit disorder, was supposed to receive study guides from teachers to help narrow the material he should focus on learning, but that he never received one until about a month before the school year ended.

She said weekly conferences between Eli’s learning-support teacher and his regular classroom teachers to determine whether he needed help or was falling behind also did not happen.

“I was at point where I felt maybe we needed to hire an advocate or a lawyer, because every time I tried to climb a rung on the ladder … it was almost like they’d brush things over, not give me the help I needed,” Gibb said. “It seemed they felt maybe I’d give up and go away.”

She said that in Individualized Education Program meetings she and her husband requested, they told school officials what Eli needed and what parts of the program weren’t being followed, but officials just said Eli needed to try harder.

“That’s not what IEP meetings are supposed to be,” Gibb said. “It’s for us all to work together as a team to make our kids more successful in school.”

Judy Chabanik, who said she has a great working relationship with her son’s classroom teachers, echoed Gibb’s concerns at the district level.

“I simply found that there has been a slow and steady decline … in the amount of cooperation that we feel during IEPs and during reviews,” said Chabanik, whose son is autistic and legally blind.

“It feels they are not as responsive and open to parent input as they have been in the past,” Chabanik said. “None of us wants to go to litigation … we would rather just sit down and talk this out and as a team come up with what would work.”

Okay, let’s start with the basic elements of the Individual Education Plan or IEP. I’ll go over who needs one, why they need one, the legalities involved and some alternatives that are allowable by law but maybe not the best for your kid.

An IEP is a plan for your child’s education that will allow you and the school to make accomodations for your child’s special needs. The official legal definition is somewhat longer, but that is sufficient for what we are doing here. IEPs are governed by the Individuals with Disabilities Education Act, or IDEA 2004. 2004 is the most recent update to the act. You can search the act in full at the Wrightslaw law center. Also, if you are looking for a good legal guide of your rights and responsibilities, wrightslaw is the best advocacy resource out there for parents.

A quick note here: If your child is in a child find/early intervention program you will not have an IEP. You will have an IFSP, or Individual Family Services Plan. When you transition to your local school that will change to an IEP.

IEPs are put together by a team, which typically consists of the parents, the child’s teacher, a school system representative, the principal of the school, the child’s case manager and any specialists that may be involved in the child’s care. For example, our IEP meetings also have an autism specialist who works for the county, an occupational therapist and a speech therapist. Those services are critical to our sons education and as such we need their input when we plan his IEP.

IEP terms last a year, and by law must be renewed prior to then.The reason this is important is that the IEP is actually a contract, enforceable and actionable by law. As such, many schools are loathe to volunteer services because they know they have to provide them. This is where we as parents need to be experts. It helps if you can speak with other parents, do some research on the internet and consult with any specialists you see prior to attending an IEP meeting.

However, if you draft an IEP and are unhappy with it, as a member of the team you have the right to call another IEP meeting at any time. At the end of every meeting everyone on the team must sign off on the IEP. Again, if you are unhappy, you do not have to sign. You can also write “signed under protest” above your signature in order to show that you are not satisfied with the school’s solutions or supports for your child.

The key thing to take away from this article is that you are the expert on your child. Administrators and teachers always present themselves as experts on children, but nobody knows more about a child than his parents. Remember that and you will do just fine.

Next up: What will the school offer me?

You are most likely reading this because your child has special needs, and you will be going through the IEP (Individualized Educational Plan) process with his or her school, for the first, or the umpteenth, time.  You may not have been satisfied with past results of this planning process, or you would like the outcome to be better this time.  Perhaps your child has made a significant change – for better or worse or just different- over the summer.  Maybe they are transitioning to a new school, school district, or program.   Perhaps an annual review is coming up, or even the three-year review.  Whatever the situation, you can be more prepared and confident the next time you go through the process.

I’ve advocated in the Special Ed system for my family and others since 1988.  As an advocate, my strategy is to provide clients with some hints, tips, and tools, and then stand back to let them run with their new knowledge.  This first article of three is about the background of my advocacy model.

The background of this model is a dollop of old fashioned open market bargaining, with a bit of formal negotiation thrown in.  In order to pull it off you basically have to realize and fully own three things:

• You are a full member of the IEP team,
• You are the expert on your child, and
• Nothing ventured, nothing gained.

Law defines the first statement.  The IDEA, the Federal law that requires an IEP for each child with a disability in publicly funded schools in the US, includes the parent as a fully functioning member of the planning team.  Because you are a member of the team, you have the right and duty to ask for definitions of acronyms or terms with which you are not familiar and to provide information to the time of which they may not be aware.  Never let school personnel convince you otherwise.

The second statement is true in the vast majority of cases.  Unless you are working 90 hours a week and someone else is raising your child, you probably see more of him or her than anyone else, and certainly more than any school staff member.  You know the kid’s manipulations, their little foibles, likes, and dislikes.  Jimmy may be able to convince his Developmental Adaptive PE instructor that he can’t balance on one foot, but you see him do it regularly at Martial Arts, or on the playground.  Susy may convince her OT she can’t button one-inch buttons, but you see her closing half inch ones on doll clothing.  The more you internalize this truth, the more confident you can be and appear.

The third statement is common sense, which is not common and often ignored.  School staff members are accustomed to following a set pattern for all students with a given label.  They find standardized programming, put together in a boilerplate form, to be most time efficient in an environment placing multiple demands on their time.  You can’t expect them to consider deviating from their model, even when appropriate, unless you ask.

A standard model of negotiation involves

• A asks for what they really want, the “best,” even an  “extreme” in some folks’ opinion.
• B tries to push the “usual” service or level of service.
• A respectfully declines and bolsters the request with evidence.
• B moves a little.
• A stands firm, perhaps modifying the request a tiny bit.
• Both talk back and forth until either an impasse is reached or an “in between” is agreed upon.

Using this model, you will need to prepare before the IEP process, by seriously examining your child’s strengths and challenges, looking at what has worked in the past (and what hasn’t), and deciding, on your own or with assistance from others, what will provide the best learning experience and results.