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

 

16 To Watch In 2016: Ashley Sabo

AshleySabo

 

Ashley who?  That might be a question many of you are asking.  But for those who know her, I’m sure they can contest that Ashley Sabo is a force to be reckoned with.  The first encounter I had with Ashley was during the Vision Coalition annual conference at the end of October.  For the past two years I have made it a point to “crash” their Twitter hashtag party.  I usually instinctively know where someone stands on Delaware education, but Ashley stood out.  She responded on many of the tweets, and it went from there.

Ashley is, first and foremost, a mother and wife.  One of her children is special needs.  Ashley became very involved in the Red Clay Consolidated School District to make sure her child was getting the best education possible.  Red Clay recently adopted a massive inclusion push for students with disabilities and their regular peers.  When the initiative started, Ashley knew she had to become involved right away.  As a result, Ashley was the co-chair of the Red Clay Secondary School Inclusion Committee.  She is now the co-chair for the District Inclusion Oversight Committee.

Her other volunteer activities are as follows: President of the Meadowood PTA, Secretary and member of the advocacy committee for the Delaware PTA, and she is working on becoming a trained Educational Surrogate Parent.  The last position is where someone acts as a parent in the special education process for children with disabilities in the Delaware foster-care system.  As well, she is also working on becoming a Court Appointed Special Advocate, which is a court-appointed position which helps abused or neglected children find a safe and healthy environment in a permanent home.

Back in March of 2014, Ashley and her husband were very involved in the feud between Nemours and United Healthcare.  For parents of special needs children, there is usually some catalyst that forces them to act.  For Ashley, this was that moment.  Once a special needs parent becomes involved in advocating not only for their child but others, it is very hard to put that fire out.  Shortly after I started this blog, another Delaware blogger left a comment on an article that always stuck with me in his accurate description of parents of special needs children:

I’ve always felt that God picks his greatest works and gives them special needs children, knowing full well that through their advocacy, care, and love, the envelope will be stretched enabling others who are weak, tired, and poor to be able to slip in and have their causes addressed too……. Meaning that if someone forces you to address an issue due to their advocacy, it is an easy next step to widen the breadth of the process to include the others as well. But the latter effort would be deemed totally impossible to attempt, were there never those advocates who initially force one to start the process. Across many states, there is a high preponderance of those who are considered the doers of good for society, who themselves are parents of special needs children. It is those parents, whose work keeps all of society human… That of course is my humble opinion. But it has become my explanation as to why all parents of special needs children seem to be, again in my opinion, bordering superhuman…

I wouldn’t say we are “superhuman”, but very dedicated to doing everything we can to make sure our children have the best life possible.  If that means going against authority or even state agencies in the attempt, so be it.  For Ashley Sabo, a life-long resident of Delaware with two masters degrees, she is well-armed for this.  There are many Ashley’s in Delaware and across America.  But Ashley has that extra fuel to keep the conversations going AND to make a difference.  I would strongly urge any district officials in Red Clay, state legislators, and those in power who have the capability of making true and lasting change for our special needs kids to truly listen to Ashley.  She is wise beyond her young years and this is clear when you meet her.  I have no doubt Ashley will be a force for change in the coming years.

As recently last night, I published an article about Red Clay’s inclusion push.  While it is certainly a very noble gesture, it won’t work if the resources and staff are not able to meet the needs of the students.  This is Ashley’s biggest fight at the moment, getting those in the district to listen to what is glaringly obvious.  Should the redistricting proposal from the Wilmington Education Improvement Commission pass, Red Clay will have even more students.  If they can’t get this now, how are they going to do this with a large influx of new students?  Whatever happens, I have faith Ashley will be at the front of the debate.  While she lists Delaware Attorney General Matt Denn and State Rep. Kim Williams as an inspiration, I can say she is a light in the darkness for all the special needs children in Delaware.

Arne Duncan Leaves Nuclear Bomb Parting Gift For Students With Disabilities

One year ago tomorrow, I wrote my biggest article ever.  Entitled US DOE & Arne Duncan Drop The Mother Of All Bombs On States’ Special Education Rights, it generated numerous hits from across the country.  I imagine just about every engaged parents of children with disabilities read that article.  It was a warning shot.  It impeded on the ability of IEP teams to accurately and correctly formulate an IEP.   The latest “Dear Colleague” letter from the United States Department of Education is actually striking the hammer into the coffin of IDEA.  The letter, written by Melody Musgrove, the Direct of the Office of Special Education Programs (OSEP), demands all IEPs be written with the state standards as part of the goals for an IEP.  I find this to be incredibly offense and this spits on the whole concept of IDEA.

In Delaware, where I live, our Department of Education released their Annual Measurable Objectives last week based on growth and proficiency of the Smarter Balanced Assessment.  While overall they want the proficiency rate to go from 50% to 75% in six years, for the sub-group of students with disabilities, they want them to go from 19% to 59% in six years.  So students with disabilities will have to work harder than every single one of their peers.

The combination of these two announcements shows that those in power in education truly don’t understand neurobiological disorders and disabilities.  It almost seems as if they want to get rid of the whole concept of special education in favor of personalized learning.  As well, it appears they want parents to pull their kids out of public education.  Is this some twisted voucher program that no one has told us about, or do they just not care about the well-being of these students?  I’m all for progress and improvement, but there comes a point in time where every long-distance runner hits a wall.  When they hit that, their body literally breaks down.  Students with disabilities are going to hit that wall and it won’t be pretty.

Another Lewis With Fake Credentials Destroys Something Good

Fake Credentials.  It’s a stupid thing to do in this day and age.  And you will get caught.  Putting a fake college name on your resume or LinkedIn is just asking for trouble.  For one special education advocate, this is exactly what happened.  But this isn’t just any special education advocate, this one the CEO of a major advocacy company called National Special Education Advocacy Institute.  I just wrote about this company a month ago when I received notice they were having certified special education advocacy courses in Wilmington at $195 a class.  Someone tipped off Fox29 in Philadelphia because they did a huge investigation into Marie Lewis, the CEO of this company.  The video and article make it crystal clear why I can not and will not endorse this company.  Fraud is fraud and it absolutely disgusts me someone with fake credentials would try to profit off students with disabilities and parents trying to help.

Where she’d go to school? It just says “R.U.”

“Where’s your Ph.D. from?” Cole asked.

“From Rockville University,” Lewis said.

“Where’s that, ma’am?” Cole followed-up.

“And so, why are you asking that question?” Lewis asked.

We wanted to know where it is.

“Well, Rockville used to be in Maryland, and they moved, and they actually were absorbed by another school,” Lewis told us.

We checked with Maryland’s Higher Education Commission. No college or university may operate in the state without commission approval, and it has no record of a “Rockville University” when Lewis claims she got her Ph.D. in 2008.

There are also huge issues with their IRS certification as well with questions if they are a for profit or non-profit business.  In the title to this I mentioned another Lewis with fake credentials.  This distinction belongs to Ann Lewis, the former Head of School of the now closed Pencader Business School in New Castle, DE.