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.

ChocolateRumBalls

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

 

What Matters If We Have Hate In Our Hearts?

When I was running for the Capital School Board, one of the questions my two other candidates and I received at a debate was “Do black lives matter.”  It threw me off.  I prepared myself for a lot of questions beforehand.  That one threw me for a loop.  My two opponents, who happened to be African-American, almost seemed offended at the question.  One of them said “Of course black lives matter.  All lives matter.”

This is how I answered.  It isn’t verbatim, but this is the essence of what I said.  I agreed with my opponents that all lives matter.  But we need to understand where those words are coming from.  I explained how there has been an inequity and disproportionality in respect to how African-Americans have been treated in this country for centuries.  I said we’ve come a long way, but we still have a long way to go.  We have a school to prison pipeline in many places in America.  Too many African-Americans don’t have the same opportunities white people do.  I concluded with the statement that the Capital Board would be remiss not to understand where those words are coming from.  I meant every single word of it.

Afterwards, a gentleman in the audience clapped.  He happened to be African-American.  I thought it was a bizarre question for a school board debate, but it was important to him.  I later found out he asked that question in an attempt to trip me up.  Why?  Would the wrong answer have given him the impression I would have been a bad school board candidate?  Did the answers my opponents gave matter?  Given what happened yesterday, I can no longer support the idea of black lives matter if it brings more death.

We are at a crossroads today.  The situation got very serious in Dallas when snipers decided to shoot eleven police officers, four of which have died at this time.  The police officers were assigned to a protest where people were speaking out against the police shootings of two black men on Wednesday, one in Louisiana and one in Minnesota.  I can’t process death well.  Especially deaths that don’t have to happen.  I don’t know enough about law enforcement procedures to say if what they did was within their authority.  I can’t even figure out my own state, Delaware, and events that have happened here.  Some believe that our cops have the authority to do whatever they want based on court rulings and attorney general opinions.  Some say the cops were justified with their actions.

This is what I do know.  I am seeing a lot of crazy talk on Facebook.  I’m seeing people talking about how they have their guns ready when “they” come for them.  I’m seeing a lot of sadness too.  From all sides of diversity.  The hopeful side of me wants to believe this is a wake-up moment for all of us.  The fearful side says this is just the beginning.  I want to believe we can find peace out of all this.  I really do.  But that is going to take a monumental shift in thinking.  It takes both sides to listen.

I was in McDonalds a couple months ago.  I had just gotten off work and I was starving.  I just wanted a quick bite to eat and go home.  I work long days at my job and it is very physically demanding.  As I sat there, peacefully eating a cheeseburger, I see two African-American teenagers laughing at me.  I asked if everything was alright.  They said I had food around my mouth.  I thanked them for letting me know.  They kept standing there, laughing at me, talking about the food around my mouth.  Meanwhile, an adult, who I presumed was their mother or caregiver watched them do this.  She didn’t say a single word.  I asked them to stop.  They kept laughing.  Finally, and with a bit more assertiveness in my voice, I asked them to show some respect.  Only at this point did the adult intervene by saying “Come on boys,” and she gave me a nasty look.  The boys walked out with their mother.  This wasn’t the first time this kind of situation has happened to me, and something similar happened another time since.  I can say I have never treated a human being like that before.  It made me angry.  Not because they were black.  But the fact that they felt they could treat another human being like that and think it was okay.  That an adult, someone who should be teaching these young men the difference between kindness and cruelty, stood there and did nothing.  I could let situations like these harden my soul.  I could let it change my thoughts and apply the actions of a few to an entire group of people.  I could make false labels about black people based on this.  But I choose not to.  I understand, at the end of the day, that for some reason they don’t trust me.  They don’t know who I am and by taking the offensive they are actually being defensive to whatever happened to them to make them think that was okay.  Discrimination and racism goes both ways.  We may not be allowed to talk about that, but I am talking about it.  It’s real, and it happens.  We all know it.

This is my plea to African-Americans like the two teenagers and their mother in McDonalds that day: stop blaming white people.  Stop thinking it is okay to taunt us, to intimidate us, to bully us.  Stop thinking we aren’t worthy of the same respect you want for yourselves.  Stop telling us there is no way we could possibly understand unless we’ve lived it.  Stop saying that’s just how we are when one on one you talk to me just fine but when you are around your friends it is something completely different.  You are whatever you choose to be.  It isn’t the situation that makes you who you are.  It’s how you deal with the situation.  And to the adults who are too wrapped in years of hatred over their own circumstances, you need to turn those bad memories into something positive.  Don’t let what hardened your soul mold the life of your children.  Teach your children right from wrong.  Let them know that whatever happened to you was horrible, but they have the power to embrace the future and practice forgiveness.

This is my plea to white people with obvious race issues: Stop thinking it is okay to refer to black people as animals when something bad happens.  Stop looking down on them as if they are from another planet.  Stop with the twitchy fingers if you are a cop and don’t fully understand a situation.  Stop  using black people for your own political ambition or warped sense of greed.  Stop thinking every time a killing happens it will be the advent of martial law in our country and President Obama will finally take away all our rights.  I’m pretty sure if this was Obama’s plan, he wouldn’t wait until his eighth and final year to get that going or he is paving the way for Hillary to do it.  Stop putting up pray for Dallas pictures on Facebook unless you are prepared to put up a “Pray for…” every single time someone dies in this world.  I will pray for Dallas along with every other city and town in America until this stops.

This my plea to all Americans: stop the hating.  Stop the killing.  Stop the labeling and false accusations and the paranoia.  Take responsibility for your own life, for your own actions.  Don’t put the weight of history on your shoulders and think you have to live it.  Be someone new.  Every day is a new day.  Every day is an opportunity to be better than the one before.  I’m not saying it’s easy.  I’m not saying it isn’t hard work.  What I am saying is this: if you don’t have love, for your neighbors, your co-workers, your classmates, your enemies, or anyone you encounter in life, but most of all yourself, you won’t ever be able to see the light in each and every heart.  Some shine bright while others are turned off.  But you can make a difference.  You can help others to turn their light on.  It may just be a smile, or a hello, or a helping hand, or saying “I care.  I understand.”  Teach your children.  Let them know that our differences are what makes us unique.  None of us are the same.  We all have one thing in common though.  We are all children of God.  In times like this, and in times of happiness, I pray.  I pray to God that we can do what He wants for us.  We can go through the Bible and pick apart this verse and that verse and apply it to every situation possible.  Many do.  But I believe the message is very simple.  Love each other.

It comes down to respect when you really think about it.  Respect for others.  For their circumstances, their situations.  Words have power.  But only as much power as we choose to give them.  But words really don’t mean anything if the tone behind it is hostile.  Which is ironic given the very nature of this blog and what I write about.  Something I have been guilty of on more occasions than I can think of.  I can sit here and say it is all out of love.  But I let my anger get the best of me.  We all do.  But I can change that, and so can you.  Before a hand-held device was smaller than our hands (they were bigger than a toddler’s head).  There were race issues, and most of them probably weren’t talked about the way they are today.  We glossed over them in the face of the Russian threat and the fear of nuclear war.  We honored Martin Luther King Jr. and made a national holiday.

Back in 1986, something called Hands Across America happened.  The goal was to create a line across America of people holding hands.  I don’t remember what is was for or if they accomplished the goal.  I would like to think it would have been impossible with the presence of rivers and high mountains and whatnot.  But the spirit was there.  We had issues back then, but not like today.  This was in the days before a gangster lifestyle was glorified in our culture.  Before the internet and social media took over our lives and gave us all transparency beyond what we could have dreamed of.  We need to somehow incorporate what we now know, what is talked about everyday with very real statistics, and stop talking about it and start acting.  We need to come together, lay down our walls of mistrust, hatred, fear, and suspicion, and work it out.  Our future, our children’s future, depends on it.

I’ve heard a lot about the Black Lives Matter movement over the past two years.  They are right.  Black Lives Matter.  White Lives Matter.  Hispanic Lives Matter.  Oriental Lives Matter.  Criminal Lives Matter.  Baby’s Lives Matter.  Children’s Lives Matter.  Muslim Lives Matter.  Christian Lives Matter.  Gay Lives Matter.  Lesbian Lives Matter.  Disabled Lives Matter.  Jewish Lives Matter.  Native American Lives Matter.  All Lives Matter.  Your life matters.  But do you want to know what doesn’t matter?  Hate doesn’t matter.  In the end, only love matters.

Amy Joyner-Francis Case Handed To Delaware Department Of Justice

The Wilmington Police Department, according to the News Journal, gave all the information and evidence on the death of Amy Joyner-Francis to the Delaware Department of Justice yesterday.

The DOJ could not provide a timeline for how soon charges will be filed but Kanefsky said Thursday that it will be prompt.

While Wilmington P.D. Chief Bobby Cummings indicated three girls will be charged in the brutal murder of Amy Joyner-Francis at Howard High School of Technology on April 21st, the exact nature of the charges will be determined by the Delaware DOJ:

…state prosecutors are reviewing evidence submitted by Wilmington Police Department to decide what charges can be lodged.

Last Sunday, a viewing was held for Amy with a packed church.  Delaware citizens, especially those in Wilmington, have been adamant that the guilty parties need to be charged so there can be justice for Amy and her family.  No charges or prison time for the guilty will take away the pain and sadness that Amy’s family and friends are feeling.  There is no replacement for a life.  Please continue to pray for those who loved Amy and miss her dearly.

The Stairs

Yesterday began like any other.  Woke up, got out of bed.  But what happened later was a first for me.  For over a year now, I’ve had a hernia.  It would flare up here and there, but nothing too painful.  That changed a few weeks ago.  The immense pain forced me to my doctor, and it was agreed this needed to be taken care of.

Today was the surgery to get it fixed.  The last thing I remember before waking up in recovery was the anesthesiologist joking with me.  I commented how cool it was in the operating room, and he said “that’s so we can keep our beers cold”.  Next thing I know I’m awaking from a slumber.  The next half hour or so was a blur.  I  heard the results of the Smarter Balanced Assessment on the radio as my father, who graciously came down to help out, was getting my prescription.

Today was a bad day to have this surgery.  Not that there’s ever a good day, but there was a lot going on.  Smarter Balanced Assessment results, an award ceremony for the “Four heroes of Education”, and a meeting at the Governor’s Advisory Council for Exceptional Citizens office.  The last was a group of folks meeting to discuss the now mandatory parent councils in each school district.  This came out of the IEP Task Force whereby parents form a council to assist new parents who are coming into the IEP process for the first time.  It wasn’t an open meeting to the public, but I joined the Delaware PTA to get in.  Unfortunately, the timing didn’t work out.

There will be days like today all the time.  I can’t be everywhere.  But what happened tonight scared me more than anything in my entire life.  Walking has been a challenge today, since the surgery.  I can walk, but I have to take it very slow and sometimes sturdy myself.  Stairs can be especially challenging.  After getting some water, I went to walk up the stairs.  My wife was on a work call and my son was asleep (after his challenging day).  As I got to the third stair, a wave of nausea came over me, and I came very close to passing out.  I started sweating immensely as I just laid myself on the stairs.  For about five minutes, I stayed there, not sure if I would overcome it or sink into oblivion.  I’ve had pain before, but as I laid there with my hernia area throbbing, I felt helpless like I never have before.  I couldn’t even talk or cry out cause I knew if I did it would take up the last remaining amount of energy I had.

As the moment continued, I decided going up the next nine stairs would not be a wise idea.  Getting up was going to be a challenge too.  So I prayed.  I prayed for God to either help me back up or let me pass out.  The  choice needed some help!  I slowly got up, one hand on the wall, the other on the railing, and I pushed my back against the wall.  The trip back to the couch, which would take ten seconds max on a normal day, took about four minutes.  But I made it, and I fell asleep in a blissful slumber.

I woke up an hour and a half ago, and knew I had to get my pain meds, which I left upstairs.  But the trip up was uneventful.  I’ve been up since.  I’ve been thinking about how some folks go through this all the time.  Whether they have cancer, or some physical impairment.  They make it through and fight, so I really shouldn’t be complaining!  But I am getting tired again, so it’s off to slumberland again.

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!