DON’T BLINK!

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.

DON’T BLINK!

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.

Chair of Wilmington Education Improvement Commission Tony Allen Clears The Air & My Thoughts On Special Education For The Commission

In a Facebook post on the “Solutions for Wilmington Schools” page, Wilmington Education Improvement Commission Chair Tony Allen addressed some concerns people were having, including myself.  I will fully admit I reached out to Tony last night and he responded very fast:

As always, I welcome the thoughtful critique and continued questioning relative to my decisions and related actions on this historically important set of issues. It will make our Commission better, our mandate more focused and the resulting product more meaningful to students and families.

To level set everyone, the 23-person Commission is effectively a steering arm and ultimately an approving authority for what will be the work of our five working committees. I use “working” intentionally here as each will carry a heavy burden, over the next five years, to create strategies to implement the recommendations outlined in the Wilmington Education Advisory Committee’s final report, “Strengthening Wilmington Education: An Action Agenda.” Updated versions of this report are available now.

As for the Committees themselves, there are five: Redistricting; Meeting the Needs of Students in Poverty; Funding Student Success; Parent Family and Community Engagement; and Charter and District Collaboration. At present, we have only named the Co-Chairs of those committees. The Co-Chairs will finalize all of their respective committees over the next week or so, but you should all know that there is plenty of room. What I hope everyone experienced in the WEAC process was a spirit of candor, engagement and full participation. I don’t expect any of that to change with the new Commission.

On the notion of representation from Early Care & Education, Daphne Evans, you raise good points, but I think you will find that we are well-represented along those lines. There are more than a few Commission members that a passionate about the issue. And perhaps more important, in my view, the foremost authority and one of the most ardent advocates on early care & education is Dan Rich. He remains the Commission’s chief administrative and policy counsel on this work and is the reason that more support for the early care movement is central to the recommendations outlined in the WEAC final report.

Kevin Ohlandt has also written a piece and talked with me separately about special education and the need for it to have its own committee. I am confident he is right, but I don’t think that such a Committee needs to be standalone in this work. To be clear, the issue of serving low-income students is multi-pronged and interwoven. That is why one of our core recommendations and legislative priorities deals with more funding for special education K-3. This issue will be taken up in the “Meeting the Needs of Students in Poverty” and the “Funding Student Success” committees.

Finally, many have rightly noticed our website moniker, http://www.solutionsfordelawareschools. We decided to broaden our materials because many of our recommendations have applicability statewide and we believe deal directly with the 51% of public school students throughout the state that are low-income. In short, while much of the discussion has been focused on redistricting, as I have said many times, simply redrawing lines does not constitute a new path for Wilmington Education. We see and have presented our recommendations as a package of ideas to be considered together and will not make additional recommendations that don’t holistically attempt to address the fundamental problem of student success.

Despite my many thoughts, concerns, issues, and predictions with the overall outcome of this whole thing, I think Tony Allen is a stand-up guy.  He is making this process very transparent which will be the key to community engagement and letting folks know what is transpiring.  I believe the whole “basic funding” for K-3 students is pivotal to making this happen, it is just one part in a machine called special education in Delaware that has 1,000 other issues that need to be fixed.  But it’s a start, and if anyone out there is a strong special education advocate and knows what Delaware needs, I strongly suggest attending these meetings and letting your voice be heard.

I had a conversation last night with parent advocate Devon Hynson who is well-known in Wilmington and around the state to be a very strong voice for students with disabilities.  We both agreed Child Find is integral to special education improvement in Delaware.  Child Find is part of IDEA and Delaware state law which mandates that if schools see issues with a child they proactively attempt to get an evaluation and contact the parents for permission for any such evaluations.  Instead, many charters and districts punish first and ask questions later.  As a result, students tend to become lost in the system.  When they could be getting the special education they legally deserve, they are treated the same as their peers.  I’m not saying schools should be diagnosing kids, but if teachers or staff see certain behaviors or situations happening, they need to reach out to their special education coordinator or educational diagnostician to get the ball rolling.  Even one school year can make a huge different in a student’s life.

Even with all the new laws passed by Senate Bill 33, which stemmed from the IEP Task Force last year, there are a host of other issues this hopefully reconvened committee needs to address.  The most important of which is “the battle”.  This is the time when districts or charters try to negotiate with the parents or advocates over services for an individual child.  This is a very fine line, and one misstep over it can have disastrous results for a special needs student.  Personally, I think every child who gets an initial evaluation should have a full-blown neuro-psychological report done by a licensed psychologist or psychiatrist.  These types of tests are very long and time-consuming, but the benefits far outweigh any expense.  The reports generated tend to be very specific about what a student needs and what kind of services they should have.  The IQ tests and behavior analysis tests given for initial evaluation do not give a full picture or delve into the full scope of what a child needs.  This would help the IEP process immensely as the report will give most of what the student needs.

As any parent of a special needs child knows, dealing with schools can be your worst nightmare, but it doesn’t have to be this way.  There is a difference between collaboration and negotiation.  Frequently, these children can not afford to have any service cut or put on the back burner.

For the general population, many think of special education as Autism or Aspergers, or, I hate to say this because I find it offensive, the “kids who ride the short bus”.  This is so far from the truth it is ridiculous.  Disabilities in children run the whole gamut of dyslexia to social learning issues to ADHD to Autism.  And several components combine in children, which makes it even trickier to help them.   When these students manifest their disabilities, which are often neurologically based, all too often the perceived notion is they can control it.  In most cases, they can not, and the law is written to understand this.  But society as a whole doesn’t get this, including schools.

I’ve always felts psychiatry needs to play a much larger role in special education.  Therapy with a psychologist, councilor, or therapists is very important, but since disabilities are neurologically-based, and this is a psychiatrist’s area of expertise, why are we relying on psychologists for everything when they just study behavior and how to fix it?  Some manifestations of disabilities, even in the highest-functioning and brilliant child, can not always be “fixed”.  But the student can learn coping mechanisms or the school can work around these things.

For example, if a child cannot control a body movement, like tapping their fingers, instead of telling them to stop, maybe give them a soft cloth or matting so they can tap on that.  This way the child is able to manifest their uncontrolled action (not behavior), and it is not a distraction to the rest of the class.  It can be that easy!  But I can guarantee with almost 100% certainty if you try to make a child stop an uncontrollable action, it will result in conflict.  If that energy is not released, it will come out in other ways.  I like to think some special needs children have coping mechanisms wired into them to sub-consciously mitigate their actions.  While tapping is minimal, it could be the child’s way of stopping themselves from jumping up and down.  A classroom is not the place for a battle of wills between a special needs student and a teacher or staff members.  Heck, there is nowhere in school this should happen.  It embarrasses the student, frustrates the teacher, and distracts the rest of the class from effectively learning.

As a parent of a child with Tourette Syndrome, I see physical manifestations of my child’s disability all the time.  I have seen research and videos and case studies that report the same thing every single time: if a child is having tics, just ignore them.  Pretend they don’t exist.  Even in the 10% of Tourette Syndrome when they have coprolalia, the uncontrollable swearing, most experts say to ignore it.

Children with special needs often go undiagnosed and this can result in a disproportionate number of suspensions or expulsions compared to their non-disabled peers.  This is one of the largest problems going on in Wilmington schools.  And yes, putting a child in an out of school placement is often a punishment.  For too many kids, it’s the school giving up and throwing their hands in the air and refusing to deal with the true issues: their inability to provide adequate special education.

When I hear about children with disabilities being placed in day programs and residential treatment centers, my first question is always “How long did the child not get the essential services?”  If a child with Obsessive-Compulsive Disorder begins showing this disability in Kindergarten, but they didn’t get services until 5th grade, of course this child is going to have major issues.  Because the child has learned that any time they exhibit their disability they are “bad” because that’s how they have been treated for the past five years.  A brand new IEP isn’t going to erase years of damage for this child.  That road to recovery, if ignored, is going to set up a lifetime of anger and resentment on the child’s part.  Their very foundation in school is a symbol of failure in that child’s mind.

These are key things I feel the Wilmington Education Improvement Commission needs to look at right away.  Funding doesn’t solve everything, some things are just common sense.  Instead of fixing special education, we need to be embracing and celebrating these unique individual kids.  They need us to understand them when the world is screaming at them.  They are scared, and feel isolated, and they don’t get why everyone hates them.  They need compassion and empathy, not a strong hand and rigor.  They want what all of us want: to feel accepted and acknowledged they are a person, not a problem.