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.

Living With Tourette Syndrome

Tourette Syndrome Awareness Month will take place this year from May 15th to June 15th.  My son has Tourette Syndrome.  As I try to educate myself on his journey through a very complex and often misunderstood disability, I find the best way to understand it is to hear from others who have it.  As such, a gentleman posted the following in a Facebook group this afternoon.  With his permission, he allowed me to put it on this blog:

Let me paint a picture for you. Imagine yourself:

-getting beatings for tics and then having severe outbursts afterwards.
-being hit in the face so hard that your nose starts bleeding.
-being pinched in the arm and having nails dug into your skin every time you tic, then having to wear long sleeve shirts to hide the blood coming from your arms.
-being targeted, bullied, and made fun of at school and in the neighborhood every day.
-having a teacher make you sit under a desk or stand in a trash can for ticcing.
-having to do years of therapy because your caretakers and teachers were insensitive to your needs and insisted on embarrassing you in front of family/classmates daily.

All of these things and MUCH MORE have happened to me, and I honestly can’t think of any other condition that a person could feel guilty for having other than Tourette’s Syndrome. It’s easy to lose count of how many times an authority figure tells (or tries to force) you to stop or calm down, not realizing that they are actually making the situation worse for the person with Tourette’s because of all the pressure they feel in trying not to embarrass the people around them. It’s hard to understand why our minds choose symptoms that are so embarrassing. It’s even harder for people that don’t have this condition to comprehend the fact that we don’t get to choose what symptoms we have and that we are always fighting our bodies every day to do things we would rather not do. There is so very little known about why we tic, why we tic until we are in pain, or hurt ourselves through tics.

It’s a complete nightmare to deal with insensitive people and people with so much lack of understanding. Sometimes their ignorance can be downright shocking. Everybody needs a good reminder every once in a while that people that have Tourette’s Syndrome didn’t ask for it. One more thing: Accepting a friend or loved one’s Tourette’s and being educated on this condition empowers you to stand with that person and support them when somebody out in public is being ignorant. #FeelTheTeel #TourettesSyndromeAwareness

If you know anyone with TS, please educate yourself on the disability and understand that a physical manifestation of Tourette’s is not behavioral.  It is neurological.  It may appear behavioral, but more than often it is not.  It would be like asking a paralyzed person to stand up.  It isn’t going to happen.

My son has TS, and in honor of him and all those who have TS, you will always be heroes in my book.  While all the above has not happened to my son, enough of it has.  It is in his name that I dedicate the entirety of this blog and every word I write has its origins in his own struggles with having a disability and his journey through Delaware education.

The Supermoon

Before a secret is told, one can often feel the weight of it in the atmosphere.

-Susan Griffin

On January 26th, 1948, a full moon shone brightly in the Winter sky.  The next time the full moon will be that close to the earth will be on Monday morning at 6:22am.  The next time you can see a Supermoon that close to Terra Firma will be 2034.  Tonight, it is just Waxing Gibbous.  It is at 97.4% of a full moon.  And it is cold out.  There is a frost in the air and the stars are shining bright.  Winter is coming.

They are saying it is going to be a mild winter this year.  Another La Niña.  So this means I could probably lay on the beach for New Years.

It’s the middle of the night.  Sleep comes and goes tonight.  I’m feeling restless, more than I have in a long time.  Afraid to close my eyes and afraid to stay awake.  Work comes in three and a half hours.  It will be a long day.

My arm is doing better.  I had a case of hairspray fall on my left elbow a month ago.  It hurt like hell when it happened, but only for a few minutes.  But then a week later this… thing… started sticking out of my elbow.  Like a Dr. Scholl’s pad golf ball.  I’ve been to doctors a few times for this.  I even had my first MRI.  Not an experience I care to repeat.  Last week I learned I had a slight tear in a tendon.  So I’ve been on light duty at work for a month and will be for another few weeks.  I work a tough job, but for scheduling purposes, there are reasons why I work that job.  It isn’t for the weak, that’s for sure.  But I feel the weight of age creeping up on me sometimes.  An odd ache here, a desire to take a nap in the middle of a day off.  And I’m not even fifty.

I haven’t been writing here as much as I could.  I have plenty to say, and plenty or articles ready to pop.  I’ve never had more research in my life.  But right now, America and Delaware seem to be dealing with President Trump in one of two ways: it is the end of democracy as we know it or it is the best post-coital bliss ever.  I don’t want to throw stuff out there that will get bypassed for yet another article about Trump.  I’m also at that point in education where I have to start calling people and organizations out.  Ones that, when I began this journey, I thought were on the side of kids.  But they aren’t.  The picture starts to get blurry and the colors start to merge.  I wish I could say there are those that I thought were the “bad guys” but then I discovered they aren’t.  But I can’t say that.  Yes, Jack Markell will sail off into the sunset.  Secretary Godowsky will go with him.  But what Jack made for Delaware is still in play.

I have this sense of foreboding tonight.  I don’t know why.  Maybe I do.  Things are going to change.  I know this but I want to wish it away.  Taking things for granted is never a good idea.  I want things to be simple again.  But they won’t be.  The last time things were simple for me was in 1975.

The summer after Kindergarten, my mom had to have an operation of some sort.  I couldn’t tell you what it was for, but it was enough for my parents to send me and my brothers to a family friend’s house for a couple of days.  We went to see Peter Pan, the classic cartoon version.  Afterwards, we went to our friend’s church.  I don’t remember how it got to that point, but I remember the minister asking me if I had anything to say.  So I told the whole church about Peter Pan.  I went on and on and on.  Everyone in the church was laughing and smiling.  I didn’t understand at the time that they weren’t laughing at how great Peter Pan was, but the fact that a five year-old boy was talking about this in God’s House of Worship.  Of course, I felt like the king of the world and the audience loved me.  I was the star of the show.

That was the last time things were truly simple for me.  Genuine, unadulterated bliss.  When you are that young, the world revolves around you.  You are the center of the universe.

I won’t be falling back to sleep tonight.  I would be getting up in an hour and a half anyways, so what’s the point.  I’ve already started my first cup of coffee.  To me, there isn’t anything better than that first sip.  Hopefully that, and a couple more, will do the trick for the day ahead of me.

Now I’m thinking of an earlier time, before Peter Pan.  My family and I were in church.  My Dad, Mom, my three brothers, and myself.  All I remember was that I was crying because my Mom went up to get Communion.  My Dad was holding me in his arms.  But I felt lost and scared.  I couldn’t have been older than two or three.  My father pulled out a little toy giraffe, no bigger than my hand.  For some reason, that giraffe gave me comfort.  It eased my troubled toddler little mind.  But I see it differently now.  I see a father holding a crying baby who wanted his mommy.  And in that moment, he found a connection.  Instead of getting upset, he gave me something he hoped would give me comfort and a feeling of safety.  It worked.  I remember holding that giraffe in my tiny hand and looking up at my dad.  In his eyes I saw a feeling of calm, of peace.

I haven’t thought, or written, about that moment in a long time.  The last time I wrote about it was in 1988.  I was in a creative writing class for the first half of my Senior year of high school.  Our final project was to write an autobiography based on something important in our life.  I wrote about my walk with God.  And I couldn’t very well talk about God without writing about all the people in my life.  This project became bigger and bigger the more I wrote.  It was about my life, from birth until that very snowy January over seventeen years later.  I believe it was about 24 pages, typed.  I got an A on it.  We had to read it in class.  I remember a few of my classmates crying when I read it.  I remember asking them later why they cried.  They said they had no idea or close I was with God.  I wasn’t a Bible-thumping evangelist running around my high school reading scripture every chance I got.  But in my thoughts, I pondered and wrestled with questions of faith back then.

It’s always darkest before the dawn.  At least that’s what they say.  It is now 3:15am.  My alarm will be going off at 4:30am.  I’m leaving it on in case weariness overcomes me and I succumb to somnus.

I was  a wreck last Christmas.  I never got the tree fully set up.  My son was transitioning to his fifth school since Kindergarten.  In six years.  It took its toll on me.  On my family.  I wonder sometimes if I will ever find a reason or answers to why my son had to go through so much at such an early age.  I watch him sometimes, struggling with his disability.  Those times when he asks God why he has to suffer through painful and repetitive tics.  Why his mind sometimes feels muddled.  Other times he refuses to believe in God because how could any God do that to a human being.  I see the host of people who have come in and out of his life.  Too much “goodbye” and not enough “hello”.  I struggle with my own thoughts on this.  When do I let go a little?  When does my fighting interfere with his ability to self-advocate?  He is fast becoming a teenager.  That transition period between boy and man.  When do I see the disability?  When do I see the boy-turning-into-a-man chrysalis?  Tourette Syndrome is not all he is.  He has it.  It affects him.  But it isn’t his whole being.  It is not his whole life.  It is just baggage he has to carry with him on his own walk through life.  One day, he will have to find peace with it.  I pray that day comes soon, but all things come in time.

What madness has struck upon me during this waxing gibbous that I am poring all these memories and feelings onto the screen?  I don’t know.  But it feels right.  Sometimes writing is my way of purging things.  Or coming to terms.  Reconnecting with the world.  I can throw numbers and statistics and secrets on the screen all day long.  But none of it means anything if I don’t have that reconnection.  I can’t be tethered to education all the time.  How I see education is not how most see it.  I dive into the cesspools most don’t even know exist.  Waters that don’t look that deep, but they will suck you in and drown you for all its worth.  But it is worth plenty.  I have no regrets.  This is my way of walking away from it.  At least for this moment.  To see life beyond the lies.  Because there is so much that human beings never learn in the classroom.  The painful and hard lessons they learn in real life.

Neil Gaiman is one of my favorite authors.  He has this uncanny knack for dealing with the most abstract of thoughts in the simplest of ways.  So that anyone can understand it.  The above picture comes from his Sandman comic-book series.  It ran 75 issues, from 1988 until 1996.  I didn’t catch on to this series until 1991.  By then it was well-known.  Each issue became a gold-mine when it came out.  By the time the 74th issue came out, I was preparing to move to another country.  Young love and a huge sense of wanderlust brought me to Sweden in 1996.  I was there for two months when I walked into a newsstand one evening.  I was killing time before going over to a friend’s house.  I sold about 90% of my comic-book collection before moving and I didn’t really have much intention of picking up the habit again.  But there it was, staring at me.  Sandman #75.  The last issue.

William Shakespeare appeared in an earlier issue of Sandman.  Gaiman crafted a reimagining of the Bard’s inspiration for A Mid-Summer Night’s Dream in the story.  Morpheus, also known as the Sandman or Dream, granted William Shakespeare the inspiration for all his plays in exchange for a boon.  Shakespeare wrote two plays for Morpheus.  The play highlighted in the earlier issue was A Mid-Summer Night’s Dream.  But the last issue was based on The Tempest.  Ironically, this took place prior to the pivotal moment in the series six issues earlier, but it served as the perfect moment for Dream to sleep.

I’m halfway done with my second cup of coffee.  For the first time in well over eight years, I read the last issue of Sandman again.  I am left wondering: do I inspire or am I inspired?  Do I write for you or do you read for me?  Do I amuse or am I your muse?  Weighty thoughts, heavier on my shoulders by little sleep and not having the ability to dream.

I leave for work in an hour.  This has been a distraction.  Away from my fears, my worries.  A distraction from a truth wrapped up in a secret.  We all do this.  We refuse to face a reality so we hide from it.  We try to cover it up.  But it’s always there, staring down at us like a Supermoon.

 

 

Reasons America & Delaware Are Still Great 2016 Edition

Many people in America today are facing an impossible choice.  We call this Election Day.  I am choosing to spend the day looking at all that is good about America and more specifically the state I live in, Delaware.  No matter what happens today, we can’t let anyone take away the spirit of what makes us Americans.  We have liberties we often take for granted.  Beyond the politics of it all, we all should want the best for each other, especially the children.  We have so much talent in this country.  Each mind is a unique and wonderful creation of beauty and grace. In Delaware, we have people doing things no one hears about, every single day. We have children who have so many gifts. We have stories of hope and inspiration. As a friend of mine said on Facebook the other day, we are more than this election.

The Search Is Over

Sometimes you find something you forgot you were looking for.

This was the case today.  My wife, son and I went down to Rehoboth Beach.  Our destinations: Funland and some of the arcades.  Just a loose, carefree trip with no hassles and no issues.  As many who read this blog already know, I have a son with disabilities.  Multiple disabilities.  His main disability is Tourette Syndrome, but with that comes a host of comorbidities.  Those include Attention Deficit Hyperactivity Disorder, Obsessive-Compulsive Disorder, and Sensory Processing Disorder.  Sometimes they all collide at once and it results in an untenable situation.

This happened today.  When we got there, we got some Grotto’s Pizza and walked down to Funland.  My wife and son went on the pirate ship dragon ride and then we did the bumper cars.  After, my wife wanted to chill on the beach for a bit so I brought my son to the arcade.  You know those grappling hook games that usually cost a dollar?  The ones where you have to position the hook over something, the hook drops down, and if you are very lucky it will grab the prize you wanted and you get it.  I gave my son some money and watched him do his thing.  Yes, I know these games are a big scam, and I tell him every time we go.  He knows it before and after, but when he is playing it this seems to escape his memory.  In a sense, it is like gambling.

I watched him getting frustrated after the third or fourth attempt and I told him he may want to give up.  I got “the look” and was told to go away.  Sometimes you have to learn lessons and this was obviously one of those times.  It’s happened before with a simple shrug and then he gets over it.  Keep in mind, there are tons of people in there and sounds coming from all the different machines.  After he had been on two amusement park rides with thousands of people all around us.  The overwhelming smell of different foods and the sea salt smell coming up from the ocean, the sounds of people laughing, talking, crying, the sights of flashing lights in the arcade, bumper cars coming at him, the slight ugh feeling from the pirate ride, and severe frustration building up from the rigged grappling hook games.  I advised him he didn’t have too much money left and he might want to save it for something else.  This is when his Obsessive-Compulsive Disorder kicked in.  He had to beat this game of rigged chance no matter what.  It was all-consuming to him.  After he blew his money he became very upset.

I told him I would talk to the manager about the hook did grab three things on three different games only to release the object of his choice and drop it in stunning defeat.  The manager said that is just how the games are set up but people do win prizes at times.  I knew this.  But I had to make sure my son knew it.  He was allowed to spend x amount of money and that was it.  He blew it in ten minutes.  Like I said, these things happened before, but today was just the perfect storm of whatever was bubbling up inside him heading up to the surface at lightning speed.  I called my wife and asked her to come up from the beach.  She came up and we tried to console my son.  We could have given him a million dollars right then and there and it wouldn’t have mattered.  Words were said, and we were all upset.  People were looking at us.  This happens with children with disabilities.  For us, this is normal.  For those watching who don’t have children with special needs it is like watching the worst dysfunctional family ever.  I’ve grown immune to this over the years and I don’t let it bother me.  They haven’t walked in our shoes, so they just don’t know.

I decided to get something to drink.  If there is one thing I’ve learned over the years, it is this: when both my wife and I try to help him, it seems to him like two against one.  One of us had to walk away.  That was me.  I came back and I took over.  My wife went back to the beach and my son and I sat there for about ten minutes.  Not speaking to each other because I knew he needed his space.  We got away from the crowds to a quieter area.  All of a sudden, he got up and just wanted to walk.  Sometimes the best way to get out of a storm is to walk away from it.  We checked out some of the shops on Main Street.  Tons of stores all around.  He was looking at phone cases in one store.  One of them had a buy one get one free sale.  He called my wife who was able to find her serenity watching the waves come in from the Atlantic Ocean.

We stopped by Snyder’s Candy Store.  He actually had a lot of fun in there.  They had Pez dispenser collections with sets of four Presidents in them going all the way back to Franklin Delano Roosevelt.  There were action figures and candy-flavored crickets and all sorts of funny distractions for him in there.  The store was empty aside from us and the three workers.  My son found a little canister of “thinking putty” and asked if he could get it.  We have given him putty to use when he gets stressed out at times and it usually does the trick for him.  I said okay but he was still looking around.  I was looking at some of the different candies the store was selling.

Flashback to 1997.  At the time, I was living in Sweden.  That winter, I was in a candy store and they had these chocolate candies called chocolate rum balls.  It was a ball of chocolate with rum mixed in with chocolate sprinkles around it.  During the next five months I lived outside of Stockholm, I would frequently visit this store and get bags of these chocolate rum balls.  When I moved back to America, I couldn’t find them anywhere.  When I went back to visit some friends in Sweden in 1999, I brought a whole bunch back with me.  Ever since then, if I happened to be in a candy store, I would sometimes ask “Do you have chocolate rum balls?”  “Sorry, we don’t.”  After years, I just kind of gave up.

At Snyder’s Candy Store, I asked the cashier if he had these.  I think he thought I meant actual liquid rum was inside of them and he said they didn’t have them.  As I was paying for my son’s thinking putty, on the top shelf of the chocolates right next to the cash register they were there.  I yelled out “Oh my God, they have them!”  My son jumped back at his Dad’s weird moment of excitement.  I bought a quarter pound of them which gave me about fifteen of them.

My wife called and she was getting something to eat at a Mediterranean restaurant so my son and I walked back to meet her.  We were all fine again.  A happy family.  He had his thinking putty, my wife had this dish she raves about every time we go to Rehoboth, and I had my chocolate rum balls I was looking for the past seventeen years.  Of course, the moment when only a 12 year old could give when telling my wife what I was eating with his silly grin didn’t escape me.  I offered some to him, but I think he thought his dad was a very odd man at this point and said no.  I savored every single one of those chocolate rum balls.  The taste brought back the memories of a 27 year old young man in a foreign country who missed home and knew he would be heading back at some point in the future.  I knew the language enough to get by and I had friends there, but it never felt like home.  In the winter, it could get very lonely with only a few hours of sunlight.  In the summer, I would frequently wake up at 2am in the morning as the sun came blazing in the window.  The circumstances that led me to Sweden were long and varied, but those circumstances were changing.  It was hard to leave, but it would have been harder to stay.

But I always missed those damn chocolate rum balls that were as elusive as a shooting star on a cloudy night.  I wasn’t meant to stay away from circumstances which led me to where I am now.  If it meant not eating chocolate rum balls for seventeen years, that was what had to be.  Life had an unexpected journey waiting in the wings and I had no clue about any of it.

Today, my long search ended.  I was able to taste memories long since forgotten.  Today was a day of senses for my entire family.  Sometimes they got to us, and other times they provided us comfort and strength.  Life isn’t perfect.  It never was and it never will be.  There will always be hurdles.  I accept that.  I have learned, and continue to learn, when my son needs my wife or I and when he just needs to work it out himself.  Sometimes I stumble with this reality.  Sometimes my patience is stretched to its limit and I lose my cool.  We all do this.  We all have our inner coping mechanisms that allow us to ride out any storms life throws at us.  Sometimes it is thinking putty.  And sometimes it is chocolate rum balls.

As we drove back from the beach, I found myself lost in thought.  Just staring at the setting sun and seeing the beautiful farms of Delaware all around me.  My son was asleep in the back seat and my wife had headphones on listening to music.  It was quiet.  Serene.  I wouldn’t trade today for anything.  Spending quality time with my wife and son, for all the angst in the beginning, was worth it.  Sometimes, when they don’t know it, I just look at them both and feel nothing but love.  These two people who God sent into my life.  The woman I love so much and the son I am meant to teach, guide, and love as long as I am able to.  God threw an extra piece in with his disabilities.  I don’t write much about the daily situations that manifest as a result of those disabilities.  But they happen.  It is as much a part of my life as anything else.  I could complain about how tough it is, but that doesn’t help my son.  I can try to mitigate situations the best I can, for him and others.  Which always leads me back to here.

He is why I fight.  Him, and every child like him.  The adults can bicker and make their silly rules, but I can clearly see that what matters most is the kids.  The ones who don’t always have someone looking out for their best interests.  The ones who don’t know half the crazy battles us adults play on their behalf.  The ones who are shut out of those conversations.  The ones who don’t get to decide where the money goes.  But these decisions affect their lives and play into their education.  Every subject I write about on here, I question if the things I find are good for kids.  Sadly, the answer is no most of the time.  This causes me to get in tug-of-war fights all the time.  Even my allies question what I do sometimes.  Some people think I’m crazy doing what I do.  Let them.  It’s not about them and it never was.

Today was just another walk on my journey through life.  It was a special day, with highs and lows, just like any other day.  Little victories to be won and moments to deal with.  But I have to think I was being told something today.  That at the moments when giving up seems like the best thing, and all you want to do is ask why, that I have to get past that and ask God to help my son instead of me.  He answered my prayers.  And I got a little extra something in the bargain!

It’s times like these you learn to live again
It’s times like these you give and give again
It’s times like these you learn to love again
It’s times like these time and time again

-The Foo Fighters

 

Delaware House Recognizes Tourette Syndrome Awareness Month 2016

For the second year in a row, the Delaware House of Representatives recognized Tourette Syndrome Awareness Month, which takes place from May 15th-June 15th, 2016.  My son Jacob and I attended the legislative session where State Representatives Debra Heffernan and Jeff Spiegelman introduced the legislation.  The House unanimously voted in favor of House Resolution #33.

Above, Kevin and Jacob in picture taken by Delaware State Rep. Kim Williams.
Below, the House Resolution.

 

Thank you, once again, to State Reps. Heffernan and Spiegelman for this honor for a very misunderstood and confusing disability. And thank you as well to Susan Breakie, the Delaware Tourette Association of America Chapter Leader to inviting Jacob and I to this momentous day!

Jacob got to meet a lot of legislators and even got a lollipop from State Rep. Michael Ramone! Unfortunately, we were not able to meet with Governor Markell this year or get to play with Speaker of the House Pete Schwartzkopf’s gavel.

On Saturday, the Delaware Tourette Association of America will be holding the Delaware Tourette Awareness Walk at Glasgow Regional Park in Glasgow, DE:

Join us in Making a Difference with Every Mile!

The Delaware Tourette Awareness Walk in Glasgow Regional Park was organized to raise awareness and funds for the Tourette Association of America. When you register for the Delaware Tourette Awareness Walk you are supporting the Tourette Association’s mission to make life better for all people affected by Tourette and Tic Disorders! Encourage your friends, family, co-worker’s and neighbors to donate on your fundraising webpage so that we can reach the team’s collective fundraising goal! The funds raised will benefit research, foster awareness, and support necessary programs.Together we can make a difference!

Registration Fees
•Early Bird Registration (Age 13+/Adult) — $25
•Day of Event Registration (Age 13+/Adult) — $35
•Children age 6-12 — $15
•Free for Children 5 and younger

Online Registration is Recommended. Online Registration closes at noon on Thursday May 12th, 2016.

What You Receive

Each participant will receive a Team Tourette T-Shirt in the size of their choice and a Team Tourette medal. There will be free food, drinks, and fun for the entire family!

Event Time/Date

Check-in/Day-of registration will begin at 9:00 a.m. and the walk will begin at 10:00 a.m. on Saturday, May 14th 2016.

Event Location

Glasgow Regional State Park

Rt 896 & Rt 40, Newark DE 19720

– See more at: http://getinvolve.tourette.org/site/TR?fr_id=1090&pg=entry#sthash.6YSsSBcQ.dpuf

Stand Up For Tourette Syndrome

This is an excellent video about what children with Tourette Syndrome go through in classrooms, the cafeteria, the school bus, and recess.  The key to Tourette Syndrome, along with many other disabilities, is understanding and acceptance and not just with their fellow students but also the staff at school.  Most people don’t make fun of someone in a wheelchair, and many disabilities are no different.  They are disabilities with neurological symptoms, meaning kids with these types of disabilities can’t help it.  They can learn to live with it, and adapt, but society and peers play a large role.  A lack of understanding causes tremendous stress and even a casual throwaway comment about a tic or something a child cannot control can play a big factor in their ability to adapt and accept their own disorder.

Delaware Horror Story Part 2

The Mountain was a massive place, nestled in the Pyrenees chain in France.  The companies that ran America bought the mountain from the French during the last Depression twenty years ago.  Prior to the purchase, the Mountain was known as Bugarach.  In 2012, when doomsayers thought the world was going to end based on the Mayan Apocalypse, they flooded the village at the bottom of the mountain.  As a result, the villagers watched their tiny little town become a freak-show tourist attraction.  The Mountain is a rare geological feature since it is upside down.  The top layers are actually older than the lower.  Inside the mountain is a vast labyrinth of caves, which was perfect for what the companies wanted to do.  There is even an underground river flowing underneath the mountain that flows into the Mediterranean basin, which is perfect for tapping into a water source that is untarnished by man’s pollution.

Tales of aliens and faeries surround the history of the Mountain.  Explorers disappeared without a trace, never to be found again.  Stories going back for millennia have Jesus and Mary Magdalene travelling through the region, dropping off the Holy Grail, and travelling on.  The Knights Templar were the guards for the rumored couple, but nothing has ever been proven one way or another with these theories.  Others believe Bugarach was an alien airport of some sort.  Some say the mountain is haunted.  If it wasn’t before the Specials arrived, it certainly had the chance to become so.

William got his gear and was told to go to the 4th floor dormitory, Room 423C.  After navigating around trying to find the elevator, William noticed Specials walking around.  He was horrified to see numbers on their foreheads.  When he looked closer, he could see small letters after the numbers.  One girl had 164757AU.  A young man had 734988TS.  A toddler had 045295AS.  William guessed what the letters stood for.  AU was Autism, TS was Tourette Syndrome, and AS was Asperger’s Syndrome.  He would see some that said OD, but they were few and far between.  The oppositional defiant ones most likely didn’t thrive in this type of militaristic environment.  He reached the elevator, but he opted to look around some more.  William heard a low mumbling sound coming from behind a door.  He opened it to see a vast auditorium.  Inside were thousands of children, watching a movie of some sort.  Guards were positioned throughout the room.  “What are you doing in here newbie?” a voice shouted at William.  He jumped back and hit his head against the stone wall.   “Sorry, I must have taken a wrong turn.”  William showed his id and went on his way.  Down the vast chamber he saw what appeared to be a struggle.  He prayed his son was not in this bizarre land, but he knew better.

William had no idea how to find his son, much less what he would do next if he did.  The Specials were prisoners there, and like the Jews of the concentration camps of old, they were marked.  His living quarters consisted of a small cot, a sink, a toilet, and a dresser.  He began to wonder if he was a captive as well.  Jetlagged and weary, William quickly put his clothes away and wrapped a blanket tightly around him in the cold and damp room.  Underneath the covers, William pulled out a small device.  His father gave it to him when he was ten years old.  William looked around the room and found a plug socket.  He carefully connected the device to the charger and plugged it in. With three terabytes used up on the device, William had literary company to last him the next forty years.  He didn’t have that time and his son’s time was rapidly running out.

His grandfather stored all of his old blog posts on the device.  Ever since the companies took away the internet from the rest of the world, aside from the classroom, news was very hard to come by.  William always went to the pictures first.  He enjoyed seeing the images of his father and grandfather from the early days of the 21st Century.  The last vestige of freedom humanity would enjoy.  Many of the names in his grandfather’s articles were strangers to him.  Everyone knew who Jack and Paul were, but other names would come up and disappear just as fast.  William read about his grandparents’ struggles with Delaware education.  While most of the credit goes to his grandfather, his grandmother was just as important.  She kept reality alive for his grandfather.  There would be endless nights where he would just investigate only to watch the sun rise.  His wife grounded him, and she kept the focus on their son.  William’s father.  He had not seen his father for a long, long time.  He always wondered where he was or if he was even alive.  The last time he saw his father was the night his grandmother passed.  His father’s anguish was very real, but with his Tourette Syndrome it caused him to lose control.  Before he knew it, the police were taking his father away.  William was fifteen, and his world ended that evening.

William pulled out the headphones and listened to the old and ancient music his father stored on the device.  Nobody made music anymore.  It was a thing of the past.  Luckily, William’s grandfather enjoyed all kinds of music so he had a wide variety to pick from.  His favorite was the symphonies.  It stirred his imagination like nothing else and took him away to worlds where hope and dreams were still alive.  As he began to enter the twilight of his day, William closed his eyes and pictured his son.  His beautiful boy who was probably the most frightened person on the planet.  David was never one to shy away from fear, but William knew he would need to one day if he wanted to survive.  David’s mother prayed the day they took David to the Disability Center.  He would always retreat away from the world, as if he were somewhere else only he knew.  He would not respond to any human voices, just smiling and rocking back and forth, back and forth.  William hoped he was happy wherever his mind took him.  When David would snap out of his trance, sometimes days later, he would become very angry and resentful.  His parents didn’t know how to handle things but they knew if he went to the Disability Center there was a very strong chance they would never see him again.

Eventually, William feel asleep.  He didn’t dream much these days.

David woke up and everything was dark.  He smelled pine and he reached out his hand.  He felt the wood rub against his finger.  He wanted to scream but he couldn’t make the sound.  He heard a noise, like someone was tearing the wood with their bare hands.  One of walls around him fell down and he could see the sun peeking in.  A man and a woman stepped forward.  The man began to speak. “Välkommen till Gamla Stan David,” the man said.  David gave him a puzzling look.  “Sorry David, it has been a while since I spoke English.  Welcome to Old Town.”  David started to lunge toward the man.  The woman put out her hand.  “No David.  You mustn’t.  You must never harm your grandfather.”

To be continued…

Part 1

Tourette Syndrome Awareness Month Begins TODAY!!!!

Tourette Syndrome Awareness Month begins today, May 15th, and runs through June 15th.  In support of those with Tourette Syndrome, please wear teal on Tuesdays during TS Awareness Month!  The Tourette Syndrome Association of America has renamed itself The Tourette Association of America.  With a new website and a new logo, TAA is looking to bring massive awareness of this disability to America!  As of May 22nd, http://tourette.org will be the new website, replacing http://www.tsa-usa.org/index.html.

In Delaware, the awareness month was honored yesterday by the Delaware 148th General Assembly when both the State House of Representatives and Senate unanimously passed House Concurrent Resolution #36, recognizing the awareness month.  Tomorrow, in Glasgow Park in Newark, DE, there will be a TS Walk in honor of Tourette Syndrome Awareness Month, beginning at 10:00am.

For students with Tourette Syndrome in Delaware, the call for awareness and acceptance has never been greater.  As a father of a child with TS, it can be very tough for our kids.  Acceptance and understanding can be difficult.  For those who happen to see a child ticcing, or maybe even making noises, try to understand these children can not help it.  And drawing attention to tics usually result in greater stress for the child, which only increases the tics.  Children with TS are just like any other kid, they just happen to have something others don’t.

Tourette Syndrome Awareness Month Recognized By Delaware In House Concurrent Resolution 36

Today, the Delaware House of Representatives voted unanimously to pass House Concurrent Resolution #36, which recognizes Tourette Syndrome Awareness Month, running from May 15th to June 15th in Delaware. Sponsored by State Reps Debra Heffernan and Jeffrey Spiegelman, this is the first resolution of its kind for Tourette Syndrome in Delaware.

The Chairpersons of the Delaware Tourette Syndrome Association, Susan Breakie and Pam Levin, both gave stirring and moving speeches about Tourette Syndrome and the discrimination and bullying that occurs in schools for TS students. Levin gave examples of situations TS kids and adults have to endure, such as “stop moving around and do your work in the hallway” when a student is ticcing, or an adult with TS being rejected from a job opportunity based on their disability. Breakie stressed there needs to be more awareness and acceptance of Tourette Syndrome to break the stereotypes concerning the “swearing” disease, and how it is a neurological and neurobiological disease with no cure.

A few children with Tourette Syndrome attended the event, and after the legislative session, they got to meet Governor Jack Markell and received Delaware pins from the Governor. It was a highlight for many of the attendees year to have this very unique and once in a lifetime opportunity!

Especially for this blogger!

Governor Markell, Kevin Ohlandt and Jacob Ohlandt, 5/14/15

First Annual Tourette Syndrome Awareness Walk of Delaware

On Saturday May 16th, the Tourette Syndrome Association will be holding it’s first Tourette Syndrome Awareness Walk of Delaware.  The location is Glasgow Regional Park in Newark, Delaware.  You can either participate as an individual, join a team, or create a team.

Sponsored by the Tourette Syndrome Association, this walk will help spread awareness and understanding of the disability that is widely considered to be one of the most often misunderstood disabilities in the world.  Please come out and help spread awareness!  To register, please go to the following website:

https://www.classy.org/newark/events/first-annual-tourette-syndrome-awareness-walk-delaware/e44627?fb_action_ids=363610033825378&fb_action_types=og.comments

As a father of a son with Tourette Syndrome, I can say this disability is extremely challenging at times.  It can manifest itself in many different ways, and is usually accompanied by several co-morbidities which can include ADHD, OCD, ODD, anxiety, depression and others.  While nobody knows the exact cause of Tourette’s, whether it is genetic or environmental, those involved know there needs to be more public awareness and tolerance of this disability.

Actress Julianne Moore Speaks Out On Tourette Syndrome

The Leftovers

Last summer I watched a new series on HBO called The Leftovers.  The basic premise of the show was 10% of the world’s populace up and disappears.  Gone.  The survivors, those you left behind, must try to understand this new world and mourn for their losses.  Many assume this is the Biblical Rapture, foretold in the Book of Revelations.

It got me thinking about what would happen if this occurred in the real world.  Current world estimates are that about 10% of the world is disabled in some sort of way.  Not that I would ever want 10% of the world to disappear, but imagine if it was all the disabled of this world, finally at peace.  These are deep, and what some would say, morbid thoughts.  But I am a parent of a special needs child, and I pray every day for an end to his suffering, emotional and physical.  I want him to have the best life possible.

Tourette Syndrome is a wax and wane type of thing, with no predictability whatsoever.  Sometimes my son knows when he is ticcing, and sometimes he is blissfully oblivious.  Lately those tics have been fierce and loud.  And he knows it. I’m not sure if it’s cause of the concussion he’s been healing from, or if this would have been the natural progression of events.  But he’s in pain, and I can see it in his eyes.  He feels like the rug got pulled out from underneath him, and he doesn’t like it.  How do I tell him to keep hoping, to believe things will get better, when he can only see what’s right in front of him?  These are hard times for him, and I hope there is another side to this he will come out of soon.

I read a book about twenty years ago called Embraced By The Light.  It’s about a woman who has a near-death experience and sees angels and heaven.  She talks to God, and he tells her those who suffer the most on this world actually chose that path before they came here.  I don’t know if this is true or not, but it comforts me in an odd sort of way.  I have to keep hoping, because the opposite, it’s not a fun place.

Tourette Syndrome: Stop And Think About The Kids Who Have It

Hey Disability Bigots, God Doesn’t Like Discrimination @TouretteNet @Touretteprobs @TicTalkTourette #netde #eduDE

I’m sick of it. I’m so damn sick of it. How ignorant can people be? They are flying off the handle over nothing. A boy looking at a table at a craft fair. The vendor running it. Boy’s mother bumps into something at the table by accident. Vendor starts screaming at mother and saying something is wrong with her boy. It’s called Tourette Syndrome genius. He can’t help it, but you can help your rage. That is a choice. My sons tics are not. Don’t worry, your not the only one. He’s been called a “mother fucker” recently by an adult. Been told countless other things as well and not just by that man.

Many people have remarked how something is very wrong with him. Thanks for that. I needed your opinion. My recommendation: read up on Tourette Syndrome and then buy a book about judging others and how to keep your mouth shut. Or you can read this, but please shut up. And if you are reading this, and you have children of your own with disabilities, you can still shut up. Thank you. I forgive you. I forgive everyone eventually. But I never forget. And all of you have lost a little bit of light in the world by not knowing the awesome boy my son is.

I have to wonder where manners and any sense of compassion went. It used to be people didn’t do this kind of stuff. But it’s happening, more and more. Yes, I have a son with a disability. And guess what, we’re not going anywhere so you had best get used to it. If you can’t, then deal with it yourself. Don’t bring your prejudice and discrimination to my family’s world. We’ve had just about enough of that. If you can’t handle kids with disabilities at large gatherings, then you might want to stay home. Cause kids like mine, he is one of 13% of kids in this state with disabilities. And those numbers are rising. I can’t say why, they just are. Maybe it’s all the crap in the atmosphere. Maybe it’s all those preservatives we love to put in our body. Maybe God is testing us all to learn patience. I don’t know. But I deal with it, every day. Like every parent, it’s a learning experience, followed by trial and error. I don’t always get it right. Sometimes I get it very wrong. We all make mistakes.

A couple weeks ago I was at my son’s school. A little girl was being accompanied by a teacher. She came in an just stared at me. She didn’t speak at all. My guess is she was autistic. The look she gave me was one of hope, of true happiness. She walked over to me, smiling the whole time. The teacher came over and said I’m sorry. I told her it was alright. We are all God’s children, so how can we judge anyone based on that? If God made some of us to have disabilities, it’s cause God knew the person having them would be very strong. I still think He has a plan for all of this. Throughout history we have been faced with these types of tests and sometimes we pass with flying colors. But sometimes we fail, and when that happens, the world suffers. I want to believe that everyone has goodness in theme, and they can use that compassion and do good things. I know I need to do it more. So how about the next time you see a child having tics, or a child freaking out in a store from sensory overload, or a blind or deaf person struggling, how about you ask them if they need help. Maybe reach out a hand instead of throwing a voice.

My Son’s Invisible Enemy

In my son’s brain are lots of neurons and electrons, doing their thing.  For children with Tourette Syndrome, like my son, the messages sent to his body can say some pretty funky things.  Instead of pay attention in class, those messages might say hum with a squeaky noise, or make an odd smile with your lips.  Sometimes those messages can remember something someone else said, and they make my son repeat it over and over.  This is his life.  This is his world.  I can imagine it, and empathize with him, but I will never be able to truly understand.

Last week, he had that humming and squeaking tic.  It lasted for three days- morning, noon and night.  By the end of the 2nd night, we were hanging out, and he started screaming.  He couldn’t stand the tic anymore and he wanted it gone.  But this reaction made it worse.  Sometimes the more you try to stop it, the worse it gets.  He started to bang his head with his hand, as if he could just knock it out of his head.  It was one of the darker moments I’ve seen where a tic just completely took over and rendered him in absolute helplessness.  Eventually he fell asleep and I said a prayer for my little warrior.  I would trade places with him in a heartbeat if I could.

Tourette Syndrome (TS) is not a common disability.  If there is more than one person in a school with it, that’s a lot.  It is very difficult for someone who doesn’t live with it to understand.  I’ve heard a lot of folks say “I understand, I had a child with ADHD.”  While I appreciate the sympathy, it is very disconcerting.  For comparisons sake, it would be like telling someone in a wheelchair “I understand, I had a sprained ankle once.”  I’m not saying this to be offensive, but it needs to be said.

My son is beginning to advocate for himself, but he is at the very beginning.  He doesn’t know all the right ways to do this without offending others.  It’s a steep learning curve.  I feel comfortable he will get there eventually.  But in the meantime, I have to understand that he needs me more than ever.  To help teach him the right paths to take.  Sometime I feel like it’s a lesson in futility, but then he takes my advice on something and tries it out, and it works.  These are the small victories that I will take any day of the week.

The good days are great, but the bad days can be really bad.  Any parent with a TS child knows this.  The best we can do is love our child even more, and be there when they need that hug or a listening ear.  I’m looking at my child now, and I am filled with such a sense of gratitude that right now, he is content with the world.  That can change in a minute, an hour, or any time.  The trick for him will be learning how to deal with this invisible enemy.  To suppress or not suppress is the question he deals with daily.  Most times he couldn’t suppress them even if he wanted to.  But he is my son, and I love him no matter what.

This is who he is- a ten year old boy with his whole life ahead of him.  He has some stumbling blocks most kids don’t have.  But he also has a compassion inside of him, and he feels things so deeply.  He’s an amazing kid, and I think the best thing I can do is not worry so much and stop trying to fix everything for him.  I ponder on the what ifs way too often.  My biggest wish is for people to see him like I see him.  But he’s still not taking the Smarter Balanced Assessment!