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.

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

 

Breathing Underwater

For children who have sensory processing disorder, sometimes the environment becomes more than they can handle.  Add some anxiety to that, and it can cause an explosion in the brain.  This happens to children with this disorder numerous times and can happen several times a day.  When teachers see this, do they know the best thing to do?  Most parents will tell you the children need space and not to crowd them.

I’ve heard these children say “I can’t breathe.”  For these children, they are obviously breathing, but their mind doesn’t register that.  They have so much going on in their synapses and they don’t know how to let it flow it naturally.  Everything gets stuck in there and it becomes too much for them.  Have you ever tried breathing underwater?  Unless you have protective gear on, you can’t.  This is what it’s like for these children when they hit this wall.  Now imagine an adult coming over and telling them to snap out of it or to pay attention.  This becomes an added bit of pressure to an already insurmountable situation.

Teachers and administrators at schools need to understand this.  They need to be fully aware of these situations so they don’t become worse.  I’ve seen where children are at this point and an adult, usually unknowingly, makes the whole ordeal much worse.  The next time you see a student get like this, try just doing nothing, or softly ask them if they want to take a walk, either by themselves or with someone they trust.  You would be surprised what will happen.

Was The Wild Boy of Ayeron Autistic? Did His Story Help Create Special Education? #netde #eduDE

In 1800, a prepubescent boy was found in the woods of France near an area called Saint-Sernin-sur-Rance. The boy was taken to a doctor, and the physician determined the boy had lived in the woods most of his life. Nobody knew where he came from. Some said he had been abandoned as the bastard offspring of nobility, or he became missing during the French Revolution. The doctors who examined him likened him to a feral creature.

Eventually, he was taken in by a young physician named Jean Marc Gaspard Itard. He quickly noticed the boy wouldn’t speak, and surmised he was deaf. But he soon learned the boy could hear, but he would not talk at all. Itard believed the boy had been in the woods since the age of five, and guessed he was twelve when he was found, putting him in the wild for a period of seven years. The boy had many scars on his body, and very typical food tastes for someone that lived in the wild.

Itard named the boy Victor and took him to the National Institute for the Deaf in Paris. Victor was studied by a well-known doctor named Roch-Ambrose Cucurron Sicard. Itard wanted Victor to have intense and individual instruction. During these years, The Enlightenment was in full swing, so Sicard and his followers believed studying Victor could help prove the theories of the time, that man could be a noble savage. The studies did not prove this at all, and Sicard quit treating Victor.

Itard took Victor back to his home, and began to try to teach Victor to speak and to show human emotion. Had Itard not taken Victor in, he would have wound up in an institution with horrible conditions. Itard’s main goals for Victor were to teach Victor to speak, to awaken his senses, teach him ideas, and to bring Victor to a level of normal social communication. Victor had the ability to understand and listen, and even to read, but only at the most basic levels. Itard knew the only way he was going to teach Victor was if he showed respect to him, and while it didn’t help Victor reach Itard’s goals for him, it helped form the basis for many modern forms of special education.

As a result of Itard’s attempts with Victor, he has become known as the “father” of oral education for the deaf, special education for mentally and physically handicapped individuals, and behavior modification for children with disabilities. Through Itard’s methods with “The Wild Boy”, Victor was able to show empathy for people but his language and listening skills were reactive. Even though he had the ability, it was mostly in anticipation to his needs when he was in the woods. Itard used what is now known as a “sensory environment” to teach Victor.

The scars on Victor’s body have been determined to be those from child abuse, not attacks by animals in the woods. Many have guessed that Victor was born a normal child, but developed some type of mental disability. Nobody thinks Victor could have survived in the woods as a toddler, so he had to have been around human beings before he was most likely abandoned. Many believe Victor was autistic, because he was not technically deaf, but even after intense instruction from Itard, he was still not able to speak. Itard used sensory stimuli to help Victor, but the response from Victor was not what he hoped for.

Itard’s teachings with Victor helped pave the way for later educators such as Eduard Seguin and Maria Montessori, who built upon Itard’s techniques to help mentally retarded individuals around Europe. For Victor, his life was a short one, dying in 1828 in the home where he was taught that even if you have a disability, a caring hand can make life more comfortable. In a way, one could say Victor had the very first IEP.

Happy 4th Of July! #netde #edude

Just wanted to wish all my faithful readers a happy 4th of July. My wife, son and I went to the Dover parade, marched with a politician, enjoyed time with a family we hadn’t seen in a few years, and saw a great fireworks show. The spirit of America was in full swing in Dover tonight.

For my son it was a stimuli explosion. Loud noises, tons of people, cars, dogs, bright lights, and so on. The poor guy crashed in his mom’s arms shortly after the fireworks started. Yes, he missed most of them. This is the same child who fell asleep during a One Direction concert last year.

I have always loved the 4th. It’s a time to celebrate the successes of our country and contemplate what we can do to make it better. I promise not to hold back anymore. This week, I will be writing my biggest article yet. Stay tuned, and have a great night!

Sensory Issues are not the same as “Irrational Fears.”

An excellent article for parents of kiddos with any type of sensory processing issues. Especially with all the fireworks tomorrow!

Autism & Oughtisms

Earlier this year I was reading a national newspaper lifestyle story, about a family taking their Asperger’s child with them on holiday to Fiji. As I read it I felt very uncomfortable about the family’s attitude and approach to their child’s debilitating sensory issues, but I couldn’t quite pin-point why it seemed so very wrong. More recently I was directed towards a piece, also written by a mother, about how she lives and deals with her autistic (PDD-NOS) child’s “fears.” She treated and talked about the fears as if they are a grouping of distinct and irrational phobias, even though the what she describes is very clearly classic sensory issues.

Both these writings left me with the same uncomfortable niggling feeling, that something was wrong and potentially harmful in the way they were dealing with their autistic children. Both also left me biting my tongue, because I loathe…

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Meet Kathy Willis, A Delaware Advocate For Children with Special Needs #netde #edude

 

I have the extreme pleasure of posting an interview I recently had with Kathy Willis. Kathy is an advocate for children with special needs and disabilities in the state of Delaware. She has attended several Individualized Education Plan (IEP) meetings to support parents in helping to get the accommodations their children need in IEP and 504 plans. I met Kathy last month through Kilroys, and I believe she is a great person in our state to help our children. Kathy’s story is below, and she has gone through several of the same struggles many parents have in Delaware. But she turned dark times into something positive that has been truly beneficial for parents. I don’t know if the DOE and the state government realizes how many of us are out there, trying to champion this cause. It can be as an advocate, or a blogger, or as a parent attending a support group. Without further ado, please meet Kathy Willis!

I understand you have children with disabilities. Did you have any struggles with any schools in Delaware?

I have two children with disabilities. My son has Asperger’s Syndrome, Sensory Processing Disorder, ADD, severe casein intolerance (casein is a protein in milk), expressive language delay, and medical issues. Also, to make it even more complicated he is twice exceptional, which means he is gifted with a learning disability. My daughter has mild to moderate dyslexia, and has an average to above average IQ.

We have had problems with both of their schools.

My story started with my son. We always knew he became extremely stressed during the school year. He was never a behavior problem, but he hated school to the point it made him physically sick. We home schooled off and on most of his life because of his severe anxiety. In 9th grade, he went to a charter school, and he was so incredibly stressed that he would literally rip his fingernails off to the point he would bleed.  He would spend hours upon hours doing his homework, and he would literally hit his head and say “I am just so stupid.”

We actually wanted to bring him back home. He was happy and content when we homeschooled him. He was incredibly bright and easy to home school. However, he decided he wanted to stick it out at this charter school. We supported him in this decision, but we grew more and more concerned as his anxiety increased. In November of 9th grade, he had a serious medical issue with rapidly developing pectus carinatum. He had numerous doctor visits, including a trip to the New York area for a brace fitting several times.

I had been in touch with the school’s Educational Diagnostician (ED) after a teacher referred her to me. She seemed nice, and at the time I actually trusted her. I actually updated her on my son’s medical condition during our visits to see specialists as far as California, and thought of her as a friend at the time. I had asked several times to have him evaluated, and that I knew something was wrong. I grew frustrated, as she seemed to ignore my requests for months. I began to study Delaware special education laws and Wrightslaw (link to http://www.wrightslaw.com/)

I finally put my request for an evaluation in writing, and she finally did a very basic and completely lacking evaluation. In the end, he basically scored 4 years ahead in most areas except written expression. (I guess I did a good job with homeschooling!) Due to his disability, he was on a kindergarten level in written expression. I didn’t know much about what this meant at the time, but when the ED suggested he sit with her to learn basic grammar at lunchtime, I knew something was not right. He had scored four years ahead in basic grammar, sentence structure, and spelling so how would learning basic grammar help him? It just didn’t make sense. At first, I politely said that I did not agree, and paid for an occupational therapy (OT) evaluation independently. We learned he had many deficits, and we paid over $6000.00 in OT to help him. The school later hired an OT of their own to write a report on our OT’s evaluation, which of course she disagreed with. The ridiculous part was that she had never met my son, nor had she ever evaluated him. I personally think she should lose her OT license.

The story grew from here as my son’s struggles increased. We started noticing that he was getting all A’s and B’s, but he was not completing assignments because he was unable to do it. His nature is to please, and despite hours of trying he couldn’t express himself in writing. He could answer a multiple choice with almost 100% accuracy, but he could not write about the same information. Assignments that were supposed to be five paragraphs long, he would only write two sentences and get an A+. I really grew concerned because he was still so stressed and he knew he wasn’t able to do the assignments, and a teacher told me that I needed to be concerned because he would never make it in college.

I began to request that he have some help with his writing. I was so naive at first that I just asked for a few minutes each week. I was repeatedly denied. We finally hired an advocate, and she was appalled at the behavior at an IEP meeting. The ED denied saying he needed instruction in basic grammar despite it being written in the actual evaluation as a recommendation. She accused me of only wanting a 504 plan, and that I refused an IEP despite literally 100s of emails begging for help. I even told her that I didn’t understand the difference in an IEP or a 504 plan.

We had an Independent Education Evaluation (IEE) completed that stated he needed an IEP for a learning disability in written expression. However, the IEE also stated that his grades were good so it was questionable how much he needed. We later found out that the teachers had lied and provided false information to the evaluator. I am so thankful for the Home Access Center, and we were able to print out his actual grades. I found that at one point he was missing 13 out of 23 assignments, but still had an A+ in his English class. I saved every assignment and grade, and found that he was only writing the two sentences for five paragraph essays. He was graded A+ for those papers. It was unreal what they were doing to keep from helping him.

There were so many dirty things done to make it look like he was faking his disability and/or to cover it up. We fought literally for three years until I was so fed up, and I literally almost memorized state and federal education laws. At the time, it was really hard to find a lawyer in Delaware for special education. I finally filed a state complaint, and the response was outrageous. If you were to read the state DOE response online, you would think that they were right not to rule in our favor. However, the report is nowhere near accurate.

After he was finally given a (ridiculously poor) 504 plan, he was to have OT for written expression weekly. Unfortunately, he did not receive one session for months. I finally filed an Office of Civil Rights complaint regarding the lack of services, ignoring their own and the school’s evaluation, falsifying records, etc. If you do any reading on OCR complaints, you will find that they rarely find in favor of the child. We won hands down, and the school was required to sign a contract with OCR. The 4 page contract required the charter school to obtain training on IEPs/504 plans, compensatory education for my son, and many other things. OCR, which is a federal entity, was serious and made several follow ups.

During the investigation by OCR, which took several months, we again tried to get an IEP for our son. The school finally hired a speech therapist to evaluate him, and even despite her recommendation for an IEP, the ED (who governed the IEP team) refused to do so. The straw that broke the camel’s back was when my son did extremely well on the DSTP, and the ED said “see he doesn’t need an IEP.” When we got home, we asked our son about the DSTP, and that we were proud of him but puzzled on how he did so well. He said, “What???? Who wrote what???” He told me that a special education teacher took him to his office, asked him a few questions, but he could not see what he was writing.

There is nothing wrong with my son’s hands, and no one should have been writing anything for him. We called the state DOE, made an appointment to take him to look at the actual test, and after reading it, he said “I did not say these things.” There were no accommodations to use a scribe, and the state was not even informed that he had one for the test. To be clear, even if a scribe is necessary, they are only to write word for word what the student says. They cannot even add punctuation without the child saying to do so. Of course, we were completely fed up.

The DOE initiated an investigation, which we followed up with a written request for one. The state DOE interviewed everyone involved including our son in our presence. The final report was that the teacher had cheated, and guess what, he did not lose his job. We were told that it was a personnel issue, and none of our business. We do not know why to this day that we did not go to the News Journal.

By the way, my son became so ill from stress that he was on homebound from December 2008 until late September 2009. The ED was still arrogant, and our fight went on for several more months. We filed for a due process hearing, and won in a resolution meeting with a settlement. My son’s senior year was his best year in his entire schooling, and with special education his writing grew from a kindergarten level to a 6th grade level. We used compensatory education to get him individual help, and he is doing well in college. We also got a true IEE, and we learned even more about his needs and disabilities. There were so many dirty things done at that charter school, but it would take me days to tell them all.

What prompted you to become an advocate?

I hate to see a child suffer. I hate it when an adult knows a child needs help, and continues to berate them for their disability. It took me a long time to learn what I know, and how to be smarter than the school so that the child can get the help they need. I believe that by helping another family through this horrible maze, it makes my son’s difficulties seem (a little) worth it. I have helped children all over the state (including PA & NJ) in numerous school districts and in all three counties in Delaware. It brings great joy and healing to see another child helped.

How does advocacy work? Do you need a license?

You do not need a license. You do need to know special education laws, but you have to be careful not to practice the law.

What are some of the most common problems you come across?

Parents don’t understand that they must put their request in writing if they want their child evaluated. They do not know how to read the school’s evaluation, they do not know their procedural safeguard. They don’t know it’s imperative to record all IEP meetings because they trust the IEP team. Children are given accommodations to help the teachers not the child. IEPs are written poorly. The child does not progress and parents don’t know how to monitor progress. Children are denied IEPs. Children’s disabilities are sometimes accommodated but rarely remediated, etc. etc.

It sounds like there are many situations where a child is denied an IEP based on intelligence. Would you find that to be accurate?

Absolutely. It isn’t always an easy task. In my son’s case, he was technically gifted so how could he need an IEP according to the school. This is old school thinking, and it clearly has no place in IDEA.

What is a due process hearing like? A mediation?

Mediation is supposed to be less confrontational with less people than a full IEP team. Also, you request Mediation without filing for Due Process. During Mediation, there is generally a mediator from the University of Delaware that leads the meeting. Any decisions made in mediation are legally binding, but the discussions held in Mediation are not.

Also, I would never agree to mediation AFTER filing for a due process hearing especially if you have hired a lawyer. If the issues are settled in Mediation, you cannot usually get lawyer fees. Generally after filing for due process, the school should offer a resolution meeting. If the issues are settled there, you can ask for legal fees to be paid. I have not had to go to a full due process in Delaware. The two cases I filed were one for my son and one for my daughter and both settled in Resolution. I have had many parents file for due process in Delaware, but all have been extremely strong cases so the school settled in Resolution. The cases settled in Resolution do not get recorded so you will never hear how often this occurs. I have had parents go through and win due process in Pennsylvania. I will say that it is extremely stressful, takes hours and hours of preparation, and you really, really need a lawyer.

Everyone talks about IEPs, but a lot of people don’t know about 504 plans. Have you ever advocated for someone on a 504 plan?

I have advocated for children with 504 plans. It is rare that I think a 504 plan is sufficient. If the child has medical conditions that affect his education, but has no educational or behavioral needs, then and only then might a 504 plan be sufficient.

Many people in Delaware believe charter schools have the most special education issues. Do you believe charter schools have more problems with special education than regular public schools?

Yes, but regular public schools can be just as bad. The cost is high to educate a child with a disability, but they deserve a Free Appropriate Education (FAPE). I have found that those leading and working in charter schools have very little knowledge about special education laws. However, make no mistake that a child with a disability has the same protections and rights as any child does in any other public school.

What do you think of special education in Delaware?

Honestly, we do a pretty good job with early childhood (before entrance into the school system) interventions. However, we absolutely stink once a child gets older.

Do you think schools in Delaware are accurately performing their Child Find duties?

They do a pretty good job with early childhood Child Find, but once a child is in elementary school the identification goes down. They are required to assess in all areas of suspected disability, and you will mainly find the status quo evaluation only has an IQ test and a basic achievement test. Tests only measure what they are designed to do. For example, the most common intelligence test is the WISC, which is based mostly on language. If a child has an expressive language disorder, you could get a very false low score. I have found this to be true on many occasions. It is terrible to be told your child has a low IQ, when in fact they may not. As another example, dyslexia is rarely picked up by these standard achievement tests. There are many, many tests that are rarely used by schools that should be.

What do you think of the report that came out this week regarding Delaware needing Federal intervention for special education?

It’s about time!!

How do you feel about standarized testing and Common Core in Delaware? Do you think all parents of special needs children should have the option of opting out of standardized testing?

Common Core: I can only imagine the number of children struggling with it. I am sure we will never know. As far as standardized testing, well I am on the fence about that one. It can alert parents that a child has a disability and it can also help monitor their progress. I do believe parents should have the choice, but I fear parents will make uneducated choices. If you want your child to succeed in college, they will have to take tests.

What is the one thing you could do over if you had the chance?

I wish that I had learned how to help my son a lot sooner than I did. However, let me be clear, it is never the parent’s responsibility. According to case law and the IDEA, the child find responsibility is 100% on the schools. I still wish I could have helped my kids a lot sooner. I would also have filed my OCR complaint and my due process complaint a whole lot sooner than we did. We wanted them to just do the right thing and help our son. We didn’t want the fight, but we certainly were not going to give up. There are many days I wish I had gone to the News Journal, but our intent was to help our son, not ruin the school. We had a horrible IEP team, but we still believed in the school. There were some good things about the school.

If you hadn’t intervened with the school, where do you think your children would be now?

There is no doubt in my mind that neither of my children would be doing as well as they are in college. I believe they are both on their way to independence. I sincerely doubt my son or my daughter would have ever made of $8 an hour if they were not helped. I also think that both of them would be seriously depressed and their self esteems in the toilet. We have done a lot of emotional repairing and even counseling to help them get over the school trauma.

How are your children now?

See above. 🙂

I want to thank Kathy for her courage in telling her children’s story, as well as many useful tips for Delaware parents. As I have said all along, never walk into an IEP meeting without an advocate, take notes, and save all emails from any school the moment you walk into the door the very first day.

If you are a parent in need of an advocate, please contact Kathy Willis at advocating4kids@yahoo.com

Sensory Processing or Sensory Integration Disorder: What It Is Like For A Child

This video shows a boy walking through Walmart and the sounds and stimulation overwhelm him. Sensory Processing Disorder affects many children, including many kids with autism. Different senses can overload in the brain, whether it is sound, sight, touch, taste or smell. The stimuli comes in and it doesn’t filter through correctly, causing a traffic jam in the brain. This is a major reason why children who are afflicted with this go into a “fight or flight” mode. To make this video work, you have to turn up the volume all the way to the top, and not turn it down. I used headphones and I thought I was going to jump out of my own skin.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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