Back To School: A Great Transition Meeting #netde #eduDE

Yesterday, we had a sort of unofficial IEP meeting with my son’s new school.  Transitioning from elementary school to middle school, my wife and I thought it would be a good idea to meet the IEP team in an unofficial capacity.  My son attended as well, and it was an excellent way of not only introducing him to his primary teachers, but to also let the team know what to expect with his Tourette’s Syndrome and other diagnoses. 

Everyone was very willing to listen to our understanding of TS and suggestions.  Many questions were asked in regards to certain scenarios that may come up.  It was a great way to clear the air and start the school year off on a good note.  I highly recommend doing this for any special needs child who may be transitioning from one school to another within the same district.  I have to give high props to Capital School District in Dover, Delaware for their excellent special education team!

Five Days, A New Beginning, Old Nightmares, and Common Core Hell! #netde #eduDE #edchat

In five days Jacob starts school again.  At a new school.  In Delaware, students go to middle school in 5th grade.  Not sure why, but that’s they way it is.  Jacob is very nervous.  He already knows there will be some other students there that he had problems with in the past.  Even some student’s parents as well.  My wife and I explained to him yesterday that is all in the past, and the best way to forget about those times is to move forward.  I think it will take him a while.  With any new school for Jacob, there is the reeducation of teachers and students about his Tourette’s Syndrome.  His new school will be very proactive about it.

On Monday, the teachers and staff are being trained on Tourette’s and what to expect.  This was something my wife and I insisted on.  We wanted it as an actual goal in the IEP, but we were refused on the grounds that it doesn’t affect Jacob’s educational outcome.  I still disagree with that, but since the school agreed for all staff to be trained on it prior to school starting, each year, then I will take it as a win.  Students will be trained in the first week or two of school.  I know Jacob will be nervous and he will be ticking a bit.  I just pray that no cruel bullying or teasing results from it.

Children can be cruel.  We all know this.  They don’t always understand what is different.  Sometimes adults don’t either.  I can deal with children being cruel, to a point.  Once they know and have the knowledge to understand Jacob’s condition, and they continue to do it, to me that is bullying and discrimination.  It’s no worse than making fun of someone’s race or religion.  In Delaware, somewhere around 30% of bullying in schools is directed towards kids with disabilities.

When an adult does this, it is beyond intolerant in my eyes.  It is shameful, and those people need to look inside themselves to find out why they think it’s okay to do that.  There is no reason for any adult in this day and age, with what we know, to not understand that what is different about people is what makes us unique.

My wife and I have a transitional IEP meeting on Wednesday, the day before school.  This will give us a chance to let his teacher’s know about his disabilities and what to expect with Jacob.  I know one of his primary teachers was selected as a teacher of the year last year, so that gives me hope.

I am already dreading 5th grade Common Core homework.  My hate and loathing of the CCSS has only grown since Jacob was in 4th grade.  I know if I see one more math problem that takes three times longer to do than what I had to do, I may have to take a step outside and count to ten.  Then I will come inside, take a deep breath, and attempt to help him with his homework.  It is my fervent hope the Smarter Balanced Assessment will be a thing of the past by the time they have to take that monstrosity.  I really can’t think of any other word for it.  But no matter what happens, I have to be there for Jacob and help him with what he has to do, no matter how much I loathe it.  Cause that’s what Dads do!

Why I Care About Special Education in Delaware

I wish I could answer that question with an easy simple sentence, but I can’t.  Before my son was diagnosed with Tourette’s and all it’s friends, I can honestly say I didn’t give too much thought to special needs children.  It just wasn’t in my limited radar.  They were there, and I would see them sometimes, but it wasn’t a major part of my world.  And then a funny thing happened.  It became my world.  My family became very different then.  Every moment, every action, I saw the label.  I saw my son as different, as “not normal”.  I was in denial for a long time.  Not because of him, but because my mind, my heart, it couldn’t accept what was right before my eyes.

Over time, this changed.  My son’s disabilities were with me every waking moment.  I tried to hide from it, to run away from it, but they were there, saying “Help me Daddy”.  And I’ve tried.  For the longest time I thought if I just treated him like every other normal child, maybe things would change.  But they didn’t.  I had to take a strong look at myself before I could accept him for who he was.  I had to, and still have to, realize that it doesn’t matter what others think.  It doesn’t matter, at all.  Let them judge, let them stare.  It’s reality.

First and foremost, I am a husband and a father.  My family isn’t the perfect Norman Rockwell family that so many dream of.  I know I did for a long time, but it’s just not in the cards.  But what I have is something better.  I have something real.  Something so crazy and imperfect that it makes the most sense in the world.  I get to see something some can never see.  I see human emotion in it’s pure, truest form.  Love, anger, sadness, happiness, jealousy, hope.  It’s all there.   My son has the ability to display all of these.  But it’s more than emotions.  It’s like they are colors.  Beautiful, radiant colors, that shine the brightest in his soul.

Conversations I had with people in the past used to consist of my latest TV show craze, whether it was X-Files, Lost, or Game of Thrones. I would talk about music, some politics, but for the most part I was a very self-centered person. My world was MY world and I felt people were crazy for not liking what I liked. Then a little thing became a big thing, and before I knew it, I was fully immersed in a cause. It didn’t happen overnight. It built up for a long time, and I didn’t even realize it.

When my son started having numerous problems at his old school, I figured he was just a misfit of sorts and he liked causing trouble. But it continued, and I knew something was off, but I didn’t know what. Eventually, I found out. He had Tourette’s Syndrome. And ADHD. And Sensory Processing Disorder. And OCD. And Anxiety. And Depression. He wasn’t even in double digits yet, and he had all of this to look forward to. I didn’t have the slightest clue how to help him, and I’ll be honest, sometimes I still don’t.

I don’t expect perfection. Let’s get that on the table right now. I accept mistakes, if they are made with the right intentions. But when the “old school” denied my son services that should have been his by federal law, I was pissed off. When I fully realized the scope of it all, I was well beyond pissed off. So I researched everything. Schools. The DOE. The Government. Common Core. Rodel. Smarter Balanced Assessments. The Charter School Network. What I found was a clear path, visible to those who follow the steps.

It’s the oldest game in the world. Survival of the fittest. Cavemen did it, and those in power do it now. They don’t want to relinquish their power and they will hold onto it as long as they can. Those who get in their way are pushed aside. But something new and bizarre is happening in the power landscape. The Power People are getting together and banding together. They are forcing their will on the people through coercion and specific techniques. And it all begins with education.

We think we know what’s going on, but there are depths and levels of which most people don’t have a clue. It’s a game of chess, and their pieces have been placed in a potential checkmate position for a long time.

Tim Howard and the USA Soccer Team: Did Tourette’s Help The Team? #netde #edude

Great article from The Daily Beast about how Tourette’s actually helps athletes like Tim Howard.  I see this sometimes with my own son.  He is there one second, and gone the next!  I know certain people who have had to try and catch him at times and I’m sure they were amazed at his quickness.  This is, of course, a shout-out to the folks at that charter school in the County of Kent.

There are so many aspects of TS that haven’t even been discovered yet.  I look forward to more articles like this.  Tim Howard is one of the biggest names in the world right now, and I applaud his ability to openly talk about this TS and use it to his advantage.  I think this is a goal any parent has for a child with a disability.

http://www.thedailybeast.com/articles/2014/07/03/why-tourette-s-may-be-tim-howard-s-secret-weapon-on-the-field.html

8 Year Old Spreads Awareness About Tourette’s Syndrome

What an amazing girl.  To self advocate at this age is a true gift.

http://abc7chicago.com/145993/

Boy With Tourette’s Syndrome Wins Award

As parents, we often see the negatives about our child’s disability. Sometimes though, in this young man’s world, he has turned his disability into something very different. Find out how the whistler boy used his disability to his advantage. A very uplifting story.

IDEA: What Disabilities, Disorders or Conditions Qualify for an IEP? Find out here, along with the key rule!

The following are listed as qualifying conditions, disabilities, or disorders for an Individualized Education Plan, or IEP.  The important thing to remember for any IEP is that the condition MUST affect a child’s educational outcome.  If they are brilliant and have no problems whatsoever with learning or adapting to a classroom environment affecting the ability to learn, chances are they may not qualify.  This is a very important thing for parents to remember.  Evaluations will be done to help determine disabilities, but parents should always find out ahead of time which ones are being done, and should also do some research to make sure they are the appropriate evaluations.

The federal criteria indicates a child must be impacted in the following areas to the point where they cannot perform at grade level when given instruction at that grade level. The term the federal government gives is “adversely affected”.  The following are the educational areas where a child must be adversely affected: Oral Expression, Listening Comprehension, Written Expression, Basic Reading Skills, Reading Fluency Skills, Reading Comprehension, Mathematics Calculation, and Mathematics Problem Solving.  The key to determining all of these criteria is is a history of assessments showing what areas a child may have struggled in, as well as a guarantee of appropriate professional instruction by an educator.  Once again, educational outcome must be affected!

The following are disabilities that can qualify a child for an IEP as long as they are adversely affected educationally:

Autism: A developmental disability that overwhelmingly affects a child’s verbal and nonverbal communication, as well as the ability to socially interact appropriately or at the child’s age level.  Autism typically needs to be diagnosed before the age of 3.  If the primary diagnosis that affects the ability to have a good educational outcome is an emotional disturbance it is not considered autism.

Deafness: A child would need to be completely deaf or the hearing must be so bad that they cannot function at an educational level appropriate to their age, with or without technical assistance or amplification.

Deaf-Blindness: A child with both of these afflictions must be in a position where they cannot reasonably be educated in classrooms with students who are just deaf or just blind.

Developmental Delay: This would be a delay in one or more of these disadvantages- physical development, cognitive development, communication, social or emotional development, or behavior development.

Emotional Disturbance: The following must be present over a long period of time and to the extent that the educational outcome is affected.  These include an inability to learn that cannot be explained by intellectual or sensory or health factors, not being able to create or maintain social relationships with peers and teachers, behavior that is not normal under usual circumstances, a continuing depression or feeling of unhappiness, and an ability to create symptoms or fears in regards to school and social life.  Schizophrenia would be covered under this.

Hearing Impairment: The child is not deaf, but their ability to hear impacts them to such a degree that an educational outcome is affected.

Intellectual Disability: Not being able to significantly function intellectually at an age appropriate level.  This has to co-exist with an inability to show signs of adaptive behavior.  Another key factor is this must be shown while a child is still in development.  This used to be called mental retardation, but a law in 2010 changed the terminology.

Orthopedic Impairment: These must be conditions that stem from disease such as tuberculosis or polio, an amputation, the permanent shortening of a muscle or joint (this would include those caused by burns or fractures), and cerebral palsy.

Other-Health Impaired: This is easily the most controversial category involved in identifying whether a child qualifies for an IEP because the following do not have their own category.  It is not a one-size fits all listing though where any condition must occur, but it MUST be looked at by anyone determining a qualification for an IEP.  Disabilities or Conditions listed in this category are: ADD (Attention Deficit Disorder), ADHD (Attention Deficit Hyperactivity Disorder), Asthma, Diabetes, Epilepsy, Heart conditions, Hemophilia, Lead Poisoning, Leukemia, Nephritis (A kidney inflammation disorder), Rheumatic Fever, Sickle Cell Anemia and Tourette’s Syndrome.  With any of these, there must be clear signs that educational outcome is affected.

Specific Learning Disability: This is another one that can be easily missed that includes dyslexia, perceptual disabilities, brain injury (including those that cause minimal brain dysfunction), and developmental aphasia (also known as word blindness).

Speech or Language Impairment: These would be listed as a communication disorder with the following types of conditions- stuttering, a voice or language impairment, or an impaired articulation.  Once again, educational outcome must be affected.

Traumatic Brain Injury: Put simply, this means any brain injury cause by an “outside physical force”.  It must cause total or part dysfunction, and affect abilities such as language, reasoning, memory, cognition, judgment, problem solving, or attention.  It could also cause problems with your motor, sensory, or perceptual abilities.  Other factors could include problems with physical functions, information processing, and social behavior.

Visual Impairment (including Blindness): This covers any impairment with a child’s vision whether it can be corrected or not that also affects a child’s educational outcome.

Multiple Disabilities: Having more than one disability, disorder or condition on this list, with the exception of deaf-blindness (as that is already a multiple disability), that would cause additional special education to cover the multiple disabilities.

It is very important for any parent to know that their child does not have to be failing to have their educational outcome in trouble.  Federal law states that any child with one or more disabilities must have a free appropriate public education (FAPE) that requires “special education or related services”.

In the world of special education, teachers, special education departments and administrators live by acronyms.  They will refer to FAPE, IEP, IDEA, and other terms all the time.  If you aren’t familiar with these terms, it can get very confusing for a parent.  So it is worth it to brush up on these prior to any IEP meeting.

For a lot of parents who have already been thrust into the special education world, most of this is familiar to us.  For new parents introduced to these terms, I hope this provided some insight and clarification for you.

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!

From the HBO Documentary about Tourette’s Syndrome

See how kids who have Tourette’s really feel!