Tourette Syndrome

Do me a favor.  While you are reading this, play a little game with me.  I am talking through the 3rd wall here, to you, the reader.  Pretend I am on a stage and you are just one of hundreds of folks in the audience.  This game is called “DON’T BLINK!”.  You have to really focus.

I’m on the stage talking about your least favorite subject, whatever that might be.

You have to focus on not blinking your eyes.  Easy, right?  We’ll see.

As I babble on and on about your least favorite subject, DON’T BLINK!  I want you to take out a piece of paper.  I’ll wait for you.  While you are getting it though, DON’T BLINK!  Don’t even think about it.  Keep those eyes open.  DON’T BLINK!  Did you get your paper yet?  Did you bother to get a pen?  DON’T BLINK!

Good, you have your paper and pen.  I want you to write a set of numbers.  It will be 13, 26, 39, and you have to write down the rest.  DON’T BLINK!  I need a set of 20 numbers.  DON’T BLINK!

How many numbers do you have down?  But wait, while you DON’T BLINK and you are writing down the numbers, I want you to yell out “VITAMINS”.  But DON’T BLINK while you yell out “VITAMINS” while you are writing down the numbers.  Don’t you dare!  And don’t be caught off guard from the people staring and laughing at you because you yelled “VITAMINS”.  Because you have an assignment you have to get done.  And DON’T BLINK!

While you are doing all this, I want you to capture whatever smell is in the room and focus solely on that smell.  Smell it with every fiber of your being while you DON’T BLINK!, write down your numbers, and deal with the stares you got from yelling “VITAMINS”.  How many numbers do you have down?  If you cheated, you probably have the 20 different numbers.  That is, if you blinked, didn’t focus on the smells in the room, didn’t yell “VITAMINS”, and only focused on the numbers.

For students with Tourette Syndrome, this is their life in the classroom.  It can happen in other areas of schools as well.  When they are younger, the tics come naturally.  But as they get older, and notice more and more the odd little stares or classmates asking them what they are doing, they begin to do everything they can to suppress those tics.  But those tics are neurological in nature.  Little signals go out from the brain that affect those with Tourette Syndrome and command the body to do those things.  Suppression can be done, but it is energy that can’t be destroyed.  It comes out in other ways.

In the “DON’T BLINK” game, that exercise was for those who don’t suffer from Tourette’s.  So they can possibly understand, at a very small and miniscule level, what those with tics go through every day.  For far too many of these special needs students, that energy does come out in some way when they are suppressing tics.  But the more stimuli they have around them, the harder it is to focus on that.  Add a few different things to that soup, and you can understand why those who exhibit motor or physical tics have a hard time keeping their cool.  It is almost like having a case of the hiccups, all day, every day.

Suppressing tics also has another side effect: exhaustion.  It can be physically tiring to attempt to stop your body what it naturally wants to do.  Most students with Tourette Syndrome do not suffer from just that disability.  They have what are known as co-morbidities.  We’ve all heard the alphabet disabilities: ADHD, OCD, and ODD.  But add anxiety, depression, sensory processing issues, and yes, at times, rage.  It can be a perfect storm.

There aren’t many students with Tourette Syndrome in Delaware.  I know of less than ten myself.  There could be more.  But for even this small population of students, we MUST get it right for them.  They are counting on us.  For far too many Tourette Syndrome students across the country, schools want to address the disability the same way they would ADHD.  It is a complex puzzle, but the pieces can be put together.  It takes time, and patience, and calm.  We have come very far with Autism but I believe if it wasn’t so prevalent, we would be just as in the dark as we are with Tourette Syndrome.

In my opinion, a student with Tourette Syndrome should be celebrated in schools.  They are just like you and I with intelligence.  Many TS students are wicked smart.  But their body and mind can send out a signal on a dime without them even being aware.  Or other times it is like when you know you are going to sneeze and you try to stop it.  But most times, it is like trying to stop a case of the hiccups.  I believe it is incumbent on our schools, from elementary to high school, to let everyone they can possibly tell in that building, exactly what those tics are and where they come from.  Because if a student with TS is ticcing, they can’t help it.  Let them tic.  We wouldn’t tell a blind person to see or a paralyzed person to walk, right?  It is the exact same thing.  Let students and staff know it isn’t weird.  Do the “DON’T BLINK!” game with the students.  Let them know and feel what it is like for the TS student.  Talking about tics is VERY different from experiencing them.

This isn’t just about special education.  It’s about doing what is right.  We want to educate the “whole” student.  We want “compassionate” schools.  But we need to practice what we preach.  All schools need to do a better job with understanding manifestation of disabilities.  So many want to treat things as a behavior.  Unless you are 100% sure, assume it isn’t.  If you are a teacher or staff member in a school that doesn’t teach a TS student, let me make a recommendation for you.  You might be generally aware a student has disabilities but you may not be sure what the manifestations are.  Ask your building leader or special education coordinator if you can see their IEP.  I’m pretty sure most parents wouldn’t object to any adult in a school wanting to know more about their child with Tourette Syndrome.  As parents, we can only educate so many.  We have restrictions the school might not have.  We don’t have access to every single teacher or staff member.

Students with Tourette Syndrome go through things daily you and I can’t imagine.  At the end of the day, they want what we all want- to be loved and accepted.  That’s all.  Nothing more, nothing less.

# IDEA: What Disabilities, Disorders or Conditions Qualify for an IEP? Find out here, along with the key rule!

IDEA and IEPs

The following are listed as qualifying conditions, disabilities, or disorders for an Individualized Education Plan, or IEP.  The important thing to remember for any IEP is that the condition MUST affect a child’s educational outcome.  If they are brilliant and have no problems whatsoever with learning or adapting to a classroom environment affecting the ability to learn, chances are they may not qualify.  This is a very important thing for parents to remember.  Evaluations will be done to help determine disabilities, but parents should always find out ahead of time which ones are being done, and should also do some research to make sure they are the appropriate evaluations.

The federal criteria indicates a child must be impacted in the following areas to the point where they cannot perform at grade level when given instruction at that grade level. The term the federal government gives is “adversely affected”.  The following are the educational areas where a child must be adversely affected: Oral Expression, Listening Comprehension, Written Expression, Basic Reading Skills, Reading Fluency Skills, Reading Comprehension, Mathematics Calculation, and Mathematics Problem Solving.  The key to determining all of these criteria is is a history of assessments showing what areas a child may have struggled in, as well as a guarantee of appropriate professional instruction by an educator.  Once again, educational outcome must be affected!

The following are disabilities that can qualify a child for an IEP as long as they are adversely affected educationally:

Autism: A developmental disability that overwhelmingly affects a child’s verbal and nonverbal communication, as well as the ability to socially interact appropriately or at the child’s age level.  Autism typically needs to be diagnosed before the age of 3.  If the primary diagnosis that affects the ability to have a good educational outcome is an emotional disturbance it is not considered autism.

Deafness: A child would need to be completely deaf or the hearing must be so bad that they cannot function at an educational level appropriate to their age, with or without technical assistance or amplification.

Deaf-Blindness: A child with both of these afflictions must be in a position where they cannot reasonably be educated in classrooms with students who are just deaf or just blind.

Developmental Delay: This would be a delay in one or more of these disadvantages- physical development, cognitive development, communication, social or emotional development, or behavior development.

Emotional Disturbance: The following must be present over a long period of time and to the extent that the educational outcome is affected.  These include an inability to learn that cannot be explained by intellectual or sensory or health factors, not being able to create or maintain social relationships with peers and teachers, behavior that is not normal under usual circumstances, a continuing depression or feeling of unhappiness, and an ability to create symptoms or fears in regards to school and social life.  Schizophrenia would be covered under this.

Hearing Impairment: The child is not deaf, but their ability to hear impacts them to such a degree that an educational outcome is affected.

Intellectual Disability: Not being able to significantly function intellectually at an age appropriate level.  This has to co-exist with an inability to show signs of adaptive behavior.  Another key factor is this must be shown while a child is still in development.  This used to be called mental retardation, but a law in 2010 changed the terminology.

Orthopedic Impairment: These must be conditions that stem from disease such as tuberculosis or polio, an amputation, the permanent shortening of a muscle or joint (this would include those caused by burns or fractures), and cerebral palsy.

Other-Health Impaired: This is easily the most controversial category involved in identifying whether a child qualifies for an IEP because the following do not have their own category.  It is not a one-size fits all listing though where any condition must occur, but it MUST be looked at by anyone determining a qualification for an IEP.  Disabilities or Conditions listed in this category are: ADD (Attention Deficit Disorder), ADHD (Attention Deficit Hyperactivity Disorder), Asthma, Diabetes, Epilepsy, Heart conditions, Hemophilia, Lead Poisoning, Leukemia, Nephritis (A kidney inflammation disorder), Rheumatic Fever, Sickle Cell Anemia and Tourette’s Syndrome.  With any of these, there must be clear signs that educational outcome is affected.

Specific Learning Disability: This is another one that can be easily missed that includes dyslexia, perceptual disabilities, brain injury (including those that cause minimal brain dysfunction), and developmental aphasia (also known as word blindness).

Speech or Language Impairment: These would be listed as a communication disorder with the following types of conditions- stuttering, a voice or language impairment, or an impaired articulation.  Once again, educational outcome must be affected.

Traumatic Brain Injury: Put simply, this means any brain injury cause by an “outside physical force”.  It must cause total or part dysfunction, and affect abilities such as language, reasoning, memory, cognition, judgment, problem solving, or attention.  It could also cause problems with your motor, sensory, or perceptual abilities.  Other factors could include problems with physical functions, information processing, and social behavior.

Visual Impairment (including Blindness): This covers any impairment with a child’s vision whether it can be corrected or not that also affects a child’s educational outcome.

Multiple Disabilities: Having more than one disability, disorder or condition on this list, with the exception of deaf-blindness (as that is already a multiple disability), that would cause additional special education to cover the multiple disabilities.

It is very important for any parent to know that their child does not have to be failing to have their educational outcome in trouble.  Federal law states that any child with one or more disabilities must have a free appropriate public education (FAPE) that requires “special education or related services”.

In the world of special education, teachers, special education departments and administrators live by acronyms.  They will refer to FAPE, IEP, IDEA, and other terms all the time.  If you aren’t familiar with these terms, it can get very confusing for a parent.  So it is worth it to brush up on these prior to any IEP meeting.

For a lot of parents who have already been thrust into the special education world, most of this is familiar to us.  For new parents introduced to these terms, I hope this provided some insight and clarification for you.

# A Plea To Delaware Parents Of Children With Special Needs And Disabilities #netde #edude

Special Needs Parents

I’ve been doing this blog for less than a week, and I am amazed at how many people have looked at it, and how diverse the audience is.  I am very proud of this.  I’m still new at this, and I have a lot to learn.  When I started this blog journey by telling my son’s special education story from a Delaware Charter school, I promised I had no political agenda.  That has changed.  The only way things can change for these kids is through legislation and hammering the points home to those who need to listen the most.  I am not running for any type of office, but I believe new legislation needs to be passed so children with special needs and disabilities have more rights in the state of Delaware.  I have talked to many parents from different states, and when they hear about the types of things that go on in Delaware in terms of special education, they are shocked.

All special needs parents need to stand united.  We need to stand up to the schools and let them know they are not doing the best they can.  Some teachers do, some special education specialists do, but not nearly enough.  No one knows our children better than we do.  So why must we fight so hard to get our children what they deserve?  Why do we have to go to endless meetings and fight for even the most basic of accommodations?  Is it a funding issue?  Is it that the schools are so arrogant to truly believe they know what is best for OUR children?

Things need to change, and they need to change as soon as possible.  I go to a support group for special needs parents.  Tonight was our last meeting until September, but I know we will all be there to support each other over the summer.  Every town should have one of these groups if they don’t already.  It has helped me, and I know it has helped others.  The biggest thing for these types of groups is confidentiality.  I promised everyone I wouldn’t blog about their experiences!

As parents, we see what our children go through.  We see their daily struggles at school and home.  We know immediately when they need us more than the school.  We know why they do certain things that the schools just don’t seem to understand.  We understand that all their behavior is not intentional.  What we don’t know is why the schools don’t want to get this.

The Delaware Department of Education is having their monthly school board meeting tomorrow in Dover at 1pm in the Townshend Building, across from the new library.  On their agenda is to go over the IDEA Annual Performance Report.  I am very interested to hear what is in this report.  I can guarantee not every single special education matter is in that report.  Many parents who have gone beyond the DOE know this.  The DOE knows this.  So what happens to all of those children who are not accounted for in that report?  According to the DOE website, there are very few due process hearings in Delaware.  Those that don’t go to a due process tend to get resolved through a mediation of some sort.

I spent hours last night going through these reports from the Delaware DOE on their website: http://www.doe.k12.de.us/infosuites/students_family/specialed/cont_improv/default.shtml

The reality is very different than what is depicted in these reports and many of us know this.  The DOE stated in 2010 that all Delaware schools would have a special education audit every three years, broken down into thirds for each year amongst the Delaware schools.  Where are those audit reports?  Why doesn’t the public have access to them?  They have plenty of reports on how the special education students are doing with the “reform” of Delaware schools, whether it is through standardized testing or how they do towards reaching targets for the state performance plan.  Our students are more than just numbers and statistics.  Special education needs to change in this state.  We need to know what is going on in our schools.  The audits are for existing IEPs.  Why aren’t their audits being done on DENIALS?

In 2012, the Office of Special Education Programs (OSEP), a Federal education department, announced they are suspending compliance visits to schools around the country and they are allowing states and school districts to be more accountable for  “positive adult outcomes”.  How is that going to help a 5 year old? A 10 year old?  These are children.  They aren’t going to college or entering the workforce for many years.  This was a huge federal mistake.  This is allowing the schools to be less compliant with special education.

Parents of ADHD, Sensory Processing, Autism, Deaf, Blind, OCD, Tourette’s, and more know this.  But what are we doing about it?  We need to stand as one.  Stand together as a group.  We can’t be heard by ourselves.  Some of us have gone to District House reps or Senators about issues, but nothing ever really changes.  We need to demand change, we need to be loud, we need to be large, and we need to be public.

Our children are the most precious thing we have in our lives.  We all want them to have a better life.  But if the school’s aren’t doing it, then we need to make them change.  The schools and the state government can form all the councils, committees and task forces they want, but at the end of the day we need to be the group that facilitates change.  We need to demand transparency from the schools.  We need to know how many IEPS and 504 plans they have.  It needs to be visible on EACH school’s website.  Not just the DOE website, or hidden away on some Office Of Civil Rights webpage.  I also believe schools should report the number of IEP and 504 denials they have each month.  We owe it to our children to fight for them, to advocate for them.  And the only way we can make the schools change is to force them to be compliant.  We need to do this now more than ever.

Smarter Balanced Assessments are, unfortunately, the wave of the future.  But that future is coming up, and before we know it, teachers will be so wound up in preparing students for these tests because their jobs will depend on it.  There is already legislation coming up that could dramatically affect how teachers are measured in the future.  Everything is tied into Common Core and standardized testing now in Delaware. The implementation began in 2012, but it is in full swing this coming fiscal year.  My fear is this will be horrible for children with disabilities.  Schools will have so much pressure to be the best.  Teachers will feel like their job is on the line if their students don’t do well.  On a test done once a year.  The frustration level for the schools and teachers will be at an all-time high.  If students currently on IEPs or 504s are not fully accommodated, they will resort back to what prompted the IEPs and 504s to begin with.  There is already a zero-tolerance culture in our schools on many types of behavior.  Which can be a good thing, but for special needs students, it’s all about the communication.  Teachers will be so stressed out to begin with, how can we hope they will be able to give 100% to our students with special needs?  Child Find will not be a top priority for our educators.  Behavior issues need to be dealt with immediately is something I am hearing more and more from schools and teachers around the state.  Do not let our children get caught in the crossfire between State demands and stressed-out teachers.

We can not let the Delaware DOE, our schools, and our teachers drop the ball on special education.  Our children do not need to suffer more than they already have because of events beyond our control.  If we let this happen, then we are failing as parents.  I won’t have that kind of weight on my shoulders, nor should any of you want that.  It is time, past time, for us to take control and demand change.  It starts now.

Tomorrow, at the Delaware Board of Education meeting, public commenters are given three minutes to speak.  Come out if you can and talk about the changes you want to see.  I can’t guarantee anything will come of it, but if enough people speak, they can’t ignore us forever.  Go to your district House rep or Senator, and let them know what your issues are.  A lot of them are up for reelection in November, so it would be in their best interest to listen to you.  If not, I would have to assume they don’t want your vote.  Reach out to other candidates running for office.  See what their stance is on special education and Common Core.  In November, make an informed decision based on what is best for OUR children and the state of Delaware.  The way things are set up in Dover right now, party lines are being crossed constantly.  It isn’t just Democrats vs Republicans.  Things are being decided on that have NO public vote, and some that the vast majority of the people don’t want.  Make your vote count in November.

I will be writing more about how we can ALL come together on this.  Whether your child goes to a public, charter, vocational, or alternate school, ALL our children count.  Don’t let your child be stuck on the bottom in the race to the top.  Please contact me at Exceptionaldelaware14@yahoo.com if you have any questions, concerns, or want your story to be told.  We are all in this together!