The Special Education Reform and Its Unintended Consequences: Part 2

The Special Education Reform as addressed by the New York City Department of Education intended to align process and policy more closely by emphasizing the core principle of the LRE (Least Restrictive Environment) and asserting that every student with an IEP would receive instruction, to the extent possible, with their peers who do not have an IEP (see Part 1 here).  Furthermore, the NYC Department of Education emphasized a policy that would consider strong academic standards and scores.  At face value, this sounds like the right approach.  Who wouldn’t want all children to be able to learn together and with the highest standards, right?

The problem with this approach is that as I mentioned many times before, the NYC Department of Education targeted equality, but not equity.  What does equity mean, as opposed to equality?  Placing two students, one with an IEP that calls for a self-contained class, and another one without an IEP, in the same 25-student class, is equality, but it is certainly not equity.  Too many adjustments would have to be made in order to serve this student’s needs, and even then, it may not work.  The appearance of equality does not support the reality of what students actually need.

This is exactly what is happening in many public schools in New York City.  I am sure that this is also happening throughout the nation.  The rush to make the “reform” a place where ALL students get the SAME education on the account of equality has resulted in extreme lack of services and desired outcomes for students with disabilities.  When I was still working with the NYC Department of Education, I saw cases like this almost daily.  I was told by the powers-that-be that my role was not to place students in specific classes or even provide information regarding the school’s classroom provisions. 

Once, I was told that giving information to a parent with a child with special needs, who happened to be actively seeking information, was unacceptable.  “That information should have never left your mouth,” my immediate supervisor admonished.  My supervisors’ supervisor (the person who managed all field enrollment in the city), once toyed with the idea of banning access to the special education system to all employees, so that we could not “see” what kinds of services the students needed.  It was not our job, she said, to deal with the family’s need to have their child placed correctly from day one.  This was the school’s “problem,” not ours.  Therefore, why would enrollment personnel have access to this information? She concluded.

Many children with IEP recommendation go without their recommended services and their recommended placements.  The approach of treating every student the same does not translate into treating every student with equity, with the supports that each individual student needs in order to succeed.  Children deserve to have these services in place from the first day of school.  Letting schools “figure out” how they will service the students robs them of months, if not years, of a proper education.

If you have a child with an IEP and you feel that your child is not making progress, you are probably in this situation. 

If you want to know how to best deal with this issue, join our private/free Facebook group so that we can discuss this better, and subscribe to my YouTube channel for updated information.

Stay tuned for more information coming soon!

The Special Education Reform and Its Unintended Consequences: Part 1

Like you, and perhaps like many other educators, administrators, and parents, I was excited when the New York City Department of Education adopted the Special Education Reform.  At that time, I was working with the specialized district in the city, namely District 75, and I was seeing the influx of students whom I felt could have been given a better chance in a regular school, perhaps with supports, perhaps with a self-contained setting.  I was appalled at the numbers of students who were referred to District 75 daily.  So, when the special education reform became policy, I could not wait to see its results.  What I could not anticipate was how quickly I would get to see its unintended consequences.

My brother Fernando, whose LRE was District 75

For starters, what is the special education reform?  To answer this question, I am going to be specific to New York City, even though similar versions of this have happened everywhere in the United States.  The New York City Department of Education decided the citywide rollout of this policy would start in the Fall of 2012, with a partial rollout as early as 2010.  It entailed following the provisions of the law at its core, regarding diligence when applying the LRE (least restrictive environment) to placement of children in special programs.  At its heart, the special education reform “is aimed at ensuring that all students with disabilities are educated to high academic standards, in the least restrictive setting that is academically appropriate, and at the same schools they would have access to if they did not have IEPs,” as then-Chancellor Walcott said in a letter.

My brother Fernando, whose LRE was District 75

As I mentioned, this all sounds good.  After all, we are following the letter of the law and applying its provisions.  Right?  That’s what I thought at the beginning.  I felt that too many students were being recommended services in a specialized school that could be managed in a regular school.  But what happened after the beginning of the rollout (between 2010 and 2012), was that many of the students who would have stayed at their regular schools in self-contained classes (see the continuum of services here), were now being recommended for District 75 schools. 

Why was this happening?  Many of the psychologists I talked to told me that since their schools were no longer supporting self-contained classes (whether in elementary, middle school, or high school), they felt that the children they were supporting would be better served in a smaller class, even if that meant transferring them to a specialized school.  This was the opposite of what the reform intended!  I was appalled, but I was even more appalled at the fact that there were close to zero self-contained classes available for these children that needed them.

My brother Fernando, whose LRE was District 75

Over time, and while I was still working with District 75, we noticed that the influx of students who had specialized school recommendations waned a bit, and for me, this meant that perhaps students were receiving more accurate recommendations at the school level.  Little did I know what was happening on the other side of the fence.  Students in public schools were being recommended classes in their regular public schools, but the services were far from being accurate for the children they were supposed to serve.

Do you want to learn more about the special education reform and its unintended consequences?

Stay tuned for Part 2 tomorrow and check out our YouTube channel and free/private Facebook group.

See you tomorrow!

Dr. Ingrid Amorini-Klimek.

Using Behavior Charts to Prevent Tantrums and Power Struggles

How do I manage my toddler’s tantrums?

In my years of practice, I have been asked this question over and over again. And if you have visited my YouTube Channel, you have seen the recommendations that I have made. Now that schools in New York City are closed again due to the rise in Covid-19 cases in the city, this is a question that has come back with a renewed urgency.

Check out this video on how to stop tantrums and my course here.

How do I keep my children from fighting when I have to work from home?

One of the first tools that I suggest when parents tell me that they are having difficulty with their children at home, is the use of a behavior chart. At its core, the behavior chart is really a reward (reinforcement) chart that keeps track of children’s responsibilities at home and helps build responsible behavior. If you use this consistently, it really works!

You can find effective, cost-effective behavior charts here and here.

Don’t forget to leave questions and comments! Do you need a recommendation for a particular toy/product? Please let me know.

Cheers!

Dr. Klimek

The Family I Chose: The Gutierrez Family

“Friends are the family you choose,” my parents would often say when I was young.  As we moved to New York from Buenos Aires, those words became so incredibly real to me.  Being away from my relatives made me look for that warmth and closeness in other places, and as my parents predicted, I found it in my friends.

As a sibling of a child with disabilities, it was always my “job” to be guarded, and to vet every single person that we met.  This was a responsibility that I somehow assumed for myself and took seriously.  This meant that it was always difficult for me to have a large group of friends.  I always preferred a small, but remarkably close group.  I was always protective and picked my friends wisely.

My lucky stars must have aligned the day I met Nelly, a September morning in 1997.  I probably should also thank our daughters, Iliana and Carolina, for having sat together that day in kindergarten class!  Needless to say, that spearheaded a friendship that would stand the test of time.  But through all this time, there was something that really stood out about Nelly, who became like a sister to me, her daughters Iliana and Ivana, who are like my nieces, and their late husband and father, Anibal:  Their ability to understand my brother, love him for who he is, and the desire to be of service to those like him.

From left to right: Ivana, Nelly, and Iliana Gutierrez

I really have no words to express my gratitude to them.  They allowed their love for my brother to serve as a guiding principle in their lives.  I never had to pretend to be anything around them.  I could be myself.  I could express my doubts and my fears.  And most important of all, I could blindly trust them with my brother’s life.  After all, they designed their lives around children and adults with disabilities:  Nelly, Iliana, and Ivana all work in the field, in different capacities, and make a huge difference in people’s lives daily. 

From left: Ivana, Iliana, and Nelly

And when I say they make a difference, I really mean it.  They really, really do.  They all participate not only in their professional capacities but also bend over backwards to advance the rights of people with disabilities around the world.  They fight for access and inclusion in every area of life.  They do this because of their love, commitment, and passion for what is right.

Nelly and I

Nelly, Iliana, and Ivana, thank you for being who you are, and for your respect, love, and dedication.  I am proud to call you my FAMILY.

Unconditional Love

My list of angels and superheroes could never be complete without the special place that Omar, Daniela, and Martin, as well as their mom and dad, my uncle Pedro and my aunt Pierangela had in my life.  They are my cousins, but in reality they are so much more than that.  Truth is, I tried to write this piece so many times, but words are not enough to express my immense gratitude to them.

Daniela and me

My childhood and my life in general were simply made better because of them.  Around them, we were just a family.  We were not special, different, and didn’t need to be “accommodated.”  Life was simply life.  Love was simply love.  And my youngest brother with disabilities was their cousin too. They saw him for who he was.

Daniela and Martin

They presented a micro social experiment of what could be possible.  They presented an alternative. I felt safe.  I felt understood.  I felt heard.  And what’s more important, I felt that my little brother was a person first.  When I was growing up, it was not uncommon for people to see disability first, then, perhaps, the person behind it.

Omar and Daniela

At my cousins’ house this was not the case.

Daniela with my brother Fernando

To Omar, Daniela, Martin, and my late uncle Pedro and late aunt Pierangela, THANK YOU.

Daniela and Martin
Thank You!

My Son’s Disability is Invisible. On Mother’s Day, I Celebrate

Guest post by Stephanie Duesing

Disclosure: The post below may contain affiliate links.

I didn’t know my son Sebastian until he was fifteen. That was the year we had our first real Mother’s Day celebration. We lived in the same house together for fifteen years, so don’t misunderstand. I gave birth to him. I changed his diapers and taught him to ride a bicycle.

I was a stay-at-home mom, and he was my only child, but I didn’t know him. We spent hours together every day playing and doing crafts together. He painted the most extraordinary pictures even as a toddler. His existence filled my imagination from the moment that I looked at the faint blue positive mark on the pregnancy test, but I still didn’t know him until he was a sophomore in high school.

Now Sebastian is eighteen, and every time he hugs me I can still feel the shell of his tiny newborn ear against my lips and his infant body in the nook of my shoulder where his chest meets mine. I always inhale, trying to recapture that baby smell and the tickle of almost invisible hair on my lips. His hair is now thick and smooth, not the dandelion fuzz of pale blond.

He still hugs me every night before I go up to bed. Even after everything, especially after everything, Sebastian tells me that he loves me. Now taller than me, when his long arms reach around my shoulders and he leans in for the hug, I can still feel his little sneakers banging my hips and his little toddler arms hugging my neck. I smell the ghost of Cheerios-past every time. I hear his child’s voice whispering,”You are the best mom in the world.”

In the car when we talk about the things we’ve been through together, about how I finally came to know him when he was fifteen, I reach my hand out to him. Sebastian’s cool, long-fingered artist’s hand lands in mine, squeezing. In his gentle adult grasp I feel the ghostly hand of a child in mine, much smaller.

I cherished every sweet moment with him. Every hug, every smile, every game of hide and seek. I rocked him to sleep each night when he was little. We read aloud together until he was twelve. He still hates Les Miserables. Tolkein was more his thing, with the dragons, wizards and the magic ring that makes you invisible but also drains your soul.

What magic ring did Sebastian have that cast its spell so thoroughly over him, that it silently saved him while killing his soul? Surely it was not the cloak of invisibility that he wore all through his childhood as he zoomed through my house waving his wand. He was Darry, King of the Fairies and Professor of Defense Against the Dark Arts. He cast his charm all over so thoroughly that I didn’t see him. I couldn’t see him.

Nobody saw him. You see, Sebastian is the only person in the world known to see with words like a dolphin sees with sound. His blindness is an invisible disability. He has always slipped through our sighted world with what appeared to be the same ease as a spinner dolphin flying through the air.

I remember his eyes, so bright blue and filled with pain as we both sobbed on the kitchen floor. It was January of 2017 and we had just discovered that fifteen-year old Sebastian couldn’t recognize his own face and had taught himself to navigate our own home by counting his steps and turns. I had to tell him that he’d been born blind, not understanding how it was possible myself.

Now I am privileged to see the man who walks through this world with dignity and grace. His dry, laconic humor cracks me up, and his striking art inspires me. With his help and support, I am fighting to end the discrimination against the millions of people who have cerebral/cortical visual impairment. CVI was identified as the number one cause of visual impairment in the developed world more than ten years ago and still doesn’t have a diagnostic code. On Sunday, May 10, 2020, I will celebrate my fourth real Mother’s Day as Sebastian Duesing’s mom. I was always his mom. I just didn’t see him.

About the Author Stephanie Duesing is the author of Eyeless Mind: A Memoir About Seeing and Being Seen, a true story about the discovery of her son Sebastian’s almost total blindness at the age of fifteen.

Stephanie is devoted to raising awareness of Cerebral/Cortical-Visual Impairment (CVI) and advocating for patients with this prevalent but largely unacknowledged cause of visual impairment.  A music educator, Stephanie has taught elementary and middle school music and chorus, as well as private voice and piano. She also opened her own Musikgarten studio, where she taught classes for families with babies, toddlers and preschoolers. She’s a graduate of University of Illinois at Urbana-Champaign and lives in the western suburbs of Chicago.

Dealing with Disabilities During Quarantine

Disabilities in the times of Covid-19.

How has this quarantine influenced your daily life as a family member of an individual with disabilities?   I feel that these uncertain times have brought out the best and sometimes the worst in people.  It has exposed what connects us as humanity, but it has also shown us what divides us.  For many of us, those of us who live with children or adults with disabilities, this Covid 19 stay-at-home has been nothing short of challenging.

In my case, I have had to come face to face with my fears.  And yes, I was confronted with the very common fears of getting sick and dying, but I have also been confronted with the very real fear of losing all of the gains that I have worked so hard to secure for my brother, namely,  to be accommodated, to be included, to be understood, and to be valued as a human being.  My brother is an adult with multiple disabilities, who needs assistance for daily living activities, and needs help navigating what the rest of us may call mundane.  He finds it impossible, for example, to wear a mask in public without avoiding the feeling that he is choking to death. 

I have been in communication with my friends around the world, who are struggling to keep their children or adults with disabilities active, focused, and who are doing whatever they can to prevent the isolation that is so common in our population.  While many parents all over the world are struggling to make distance-learning work for their young school age children, families of children and adults with disabilities are struggling to hold on to the gains that they had already attained in society. 

On the other hand, it may be frustrating to see how quickly society reorganized to accommodate for this pandemic, as many of us shifted to working from home.  Working from home had been repeatedly requested by our colleagues with disabilities around the world, and most times not granted, forcing them to have to adapt themselves to a world that was not created with their needs in mind.  We are quickly seeing how the wheels have turned to accommodate society “at large.”

We also struggle because although we understand why these new guidelines were put in place, and how dangerous it could be not to follow them, we cannot avoid a feeling of déjà vu when it comes to safeguarding the rights of our loved ones.  We are constantly caught in the middle of conversations, but we are not always able to raise our voices loud enough to be heard.  I remember distinctly how the “gender-only” bathroom conversation was so personal to me.  After my father passed away, my mother became my brother’s only caregiver.  So, when my brother needed assistance in the bathroom, was she to do it in the ladies ‘room?  Or in the men’s room?  There is no conversation that does not include our population whether we recognize it or not.

So perhaps while we are sad about how much we miss our shows, going out for dinner, or travelling, all valid reasons to feel blue, let’s for one moment think of our fellow human beings with disabilities and about how we can make this place one that includes us all.  Let’s remember that they, too, want to see shows, go to dinner, freely ambulate the streets, and travel. 

Mother with her adult son.

Please let me know how you are feeling by dropping me a note below.

Making the Best of a Sad Day

Life in the times of Covid 19.

Today was supposed to go like this: I would get up early, after spending well into the wee hours of the night making sure that every detail at the apartment is taken care of, and I would run to the airport to get my mom and my brother. Instead, none of those things happened, as we are hunkered down in our homes, patiently waiting for this pandemic to ease out.

Although I have always been a fan of “regular days,” this particular regular day is a bit sadder than it should be. I can’t help but think about all the things that I was supposed to do, all the plans now discarded, the hugs not given, the laughs not exchanged.

However, in the midst of all this, I’m also content, calm, accepting. I’m content, because I know what love is, what it feels like. To experience pain is to know love. I’m calm, because this quarantine has forced me to look inward, as it should be, and to obtain the quiet that being, and not doing, entails. And I am accepting, because this is a reality that no one can change, no matter how hard we try.

I am also very grateful, for the beautiful special families out there, for granting me an opportunity to be part of your lives and to share mine with you.

The Long Blink: A Must-Have Book

This post may contain affiliate links. At no additional cost to you, I may earn a commission to help keep this site running.

When I first read about The Long Blink, I became really interested because I thought this book would illustrate what I, as many other family members and advocates for families of individuals with disabilities, have always been saying:  That a “disability” can be acquired by anyone, at any time, and can change a life in a moment.  The Long Blink surpassed my expectations. This is the story of a family, the Slattery family, and for Ed Slattery and his family, it only took a blink of an eye, a long blink that would change his and his children’s lives forever.

Ed Slattery could not have imagined that a phone call in August of 2010 would turn his life upside down.  The voice on the other line was telling him to get there immediately:  His family had been in an accident.  He would later learn that while both his children had been severely injured by this accident, it was his younger son’s prognosis that was very worrisome.  He would also learn that his wife, the love of his life, Susan Slattery, had died in this accident.

I wish I had enough space to talk about the many reasons why I think this book should be read by the entire world, but since this is not possible, I will try to illustrate in just a few points why I think this book is an absolute must-have for anyone who wishes to understand our community:

  1. Life can change in an instant:  Anything can happen to anyone, at any time.  For the Slattery family, it was Matthew who from one moment to the next, went from a normally-developing young boy, to battling for his life, to making heart-wrenching efforts to be able to hold objects with his right hand.
  2. Special Needs need Special Attention:  Even though well-meaning people may have the best intentions at heart, and may think they can define what our community needs, it is only our community that can and should be an active participant in decision making.  For Ed Slattery, it was building a new home so that Matthew can fully participate in daily living.  For me, it was being able to get a gate pass to accompany my brother to the gate when he flies.  I can’t say enough how frustrating and depressing it was for me to have to work in places where I was told what “script” to follow when dealing with families in our community.   Once, I was reprimanded for giving a parent options.  This practice is humiliating, demoralizing, and just plainly wrong.  In his journey, Ed Slattery discovers how important it is to adapt to his son’s new life and how much growth can result from this adaptation.
  3. Our Community is Inspiring:  Matthew not only inspired and moved his father, Ed, to a whole-new life, but he also changed the lives of so many people around him.  It is easy to see how learning about Matthew and the Slattery family was a transforming experience for Brian Kuebler, the journalist and author of this book.  He was sent to report on this accident first but never lost sight of this family’s experience.  The result was this brilliantly written book and the message of hope and solidarity that it inspires.
  4. Change is Difficult:  As members of this community, we tend to understand firsthand how we got here and what changes need to be made so that others do not have to suffer.  The community at-large, however, may have a much more difficult time absorbing this knowledge.  Since the accident that changed his son’s life, Ed Slattery has been a tireless advocate for trucking safety regulations, as it was a truck driver who dozed off on the road and killed his wife.  As frustrating as this has been for him, he has yet to see the full results of his arduous work.

Reading this book was a very personal journey for me.  It often reminded me of my family, growing up, the challenges and obstacles that we faced.  I’m thankful that because of our advocacy over the years, life has become a bit more manageable for families today.  Reading about the Slattery family leaves me full of admiration not only for Ed and his family, but also for the incredible families out there whom I’ve worked with, and who deal with these issues, day in and day out.

It also deepens my already gigantic admiration for my parents, because it is only through their love that I learned to love our very special village.

Get this book!  Share it with the World!

two trucks on the road

The Need for More Accessible Travel: 3 Important Areas to Consider

I just bought airline tickets and , as a result, experienced the frustration of having to pay more to be able to 1) pick a seat, and 2) check a bag.  For one of the flights, I even had to pay more to get a meal on the plane!  I was so frustrated!  However, my frustration cannot compare to the everyday frustrations of people with disabilities trying to navigate the necessities of travel.  There is no question:  There is a need for more accessible travel.

Travelling as a person with disabilities is not an easy feat.  It is a proposition that carries with it a great deal of preparation and stress.  I know this firsthand because my brother, who is a big and tall man in his forties, and has multiple disabilities, travels at least twice a year.  He, along with my mother as his companion, have experienced the stresses of navigating travel.  Having gone through this experience with them, time and time again, and having helped others navigate airports and airlines, I can relate to these experiences.

What are the issues that face most travelers with disabilities and their families?  The list is extensive, but for right now we are going to focus on the few issues that have affected my family the most.  Here they are:

  1. Accessible/Unisex bathrooms:  Most airports in the United States, and most abroad, have gender-specific bathrooms with a stall which is dedicated to someone entering in a wheelchair.  This is a good start, but it is certainly not enough.  How would someone that needs diapers changed be able to use the bathroom?  Changing tables are only for babies.  What about someone that needs assistance to use the bathroom?  A good number of individuals with disabilities need assistance flushing, sitting, pulling up their pants, etc.  My mother has a very difficult time every time that she needs to go into a “Ladies Room” with my very grown brother who needs assistance to use the bathroom.  She is always afraid that someone would “report her.”  We need accessible-for-all, stand-alone, unisex bathrooms in every airport terminal!
  2. Accessibility to Family Members to accompany even if not travelling:  My experience here in New York has been very positive with the Special Assistance personnel who help wheel my brother around through the airport, but assistance goes beyond that.  My mother needs more help than just someone who helps wheel the wheelchair.  She needs the emotional support that only a family member can provide.  I have been lucky enough (shout out to American Airlines at JFK Terminal 8!) to be able to obtain a gate pass every time.  Thanks so much to those employees that have seen this need and have processes my request!
  3. More accessibility inside the actual plane: I can always get a vegetarian meal, but once I tried to get a pureed meal for my brother and there was no such meal available! How about seats that are more ADA compliant?  My mother has to pay extra in order to get the more comfortable seat on the plane, where my brother barely fits.  I have heard other people who have to do the same.  How about more availability of ADA compliant bathrooms?  The only ones available right now are typically in first/business class and most people do not know that they have a right to use those, struggling to get themselves to the bathroom and using it with dignity.

These three areas are by far the ones where I have not seen consistent improvement.  I admit, there are many areas where I have seen improvement over the years.  Only ten years ago it was almost impossible for me to request and be granted a gate pass when my brother traveled.  Today (thanks to American Airlines at JFK Terminal 8!), I am able to accompany and help my mother all the way through the gate.  My brother’s experience has become more accessible just because of this improvement.

What are the issues that you have during travel?  Drop me a note and let me know! Let’s make accessible travel a reality!

view of a wing of a plane