My Legacy

There is nothing to writing. All you do is sit down at a typewriter and bleed.” ― Ernest Hemingway

This quote appeared in my feed, in fact on this very site today. I have been struggling with writing a blog and have now shelved it in order to “bleed” a little right now.

Tonight was not an easy night. Tonight was a night when autism showed up and it showed it’s ugly side. We are fortunate in my house, autism has been relatively controllable, as our son has gotten older, but is will never disappear.

Although he arrived two months before he was supposed to, our oldest child has always exhibited brilliance beyond his age. His beautiful blue-green eyes constantly look to see what he can learn about the world around him. He is “better than google” according to his younger brother in reference to his ever growing knowledge of all things. At his sister’s sweet sixteen, she called her brother up to light a candle and stated, ” everyday you push past the boundaries and exceed the expectations society has laid out for you.”

He began to show signs of being “different” in his early toddler days. He began to speak full sentences prior to age 1, even being able to spell out words and read them aloud to us using the magnetic letters we had on our refrigerator.

Many people accused us of working on a “super genius”, because at the time, both my husband and I were teachers. We were not, we simply provided our child with what interested him, and that was letters, numbers and trains. At the time, we had no idea that these were signs of autism spectrum disorder.

While in college, studying education, my professors barely touched on the subject of autism. Autism was ONE paragraph in my graduate level special education textbook. Today, that autism and spectrum disorders are covered in entire semesters. But not then. My son could speak, therefore he was not autistic by definition.

He had some deficits. They were not noticeable until he reached age 2 and a half. By then he had a younger sibling and his regression was chalked up to having a new baby in the house.

I tried putting him in preschool programs but emotionally, he struggled. He could not get anyone to understand what he wanted, although he had good language skills. He became frustrated easily and my beautiful, quiet and intelligent child began to have massive tantrums, which I later found out were meltdowns.

I now know how to handle them, but at the time, I was devastated. He was always so sweet and happy and now he was miserable and screaming. Hurling his long, thin body to the ground no matter where we were.

Of course, I was to blame. I was blamed for all of it. It was my fault. I could not control my toddler and care for a baby at the same time. I over indulged my oldest and now he was a problem child.

When my pediatrician noted the regression in behavior and milestones, he suggested we take him for evaluations. He believed that it was behavioral but because of a developmental concern, not my mishandling of my child. I was grateful that he spoke to me kindly and honestly. He did not blame me, he did not treat me as a bad mother, he gave me possibilities of why this was happening.

Of course, it was still MY fault. I was creating a drama, creating a problem. My father helped me find a proper specialist in Manhattan, New York City. New York University Hospital was our next stop.

My father took my son and I for a ride into Manhattan to meet the neurologist that would diagnose my son. She did not take my medical coverage. We paid outright for her evaluation which lasted all of 45 minutes and cost over $500. She spoke to my pediatrician and they discussed him sending my son for more testing so that it would be covered under my coverage. My pediatrician agreed that these medical test were necessary and complied.

The outcome of all the evaluation was that my son was “on the spectrum”. 21 years ago this term was not as widely used as it is today. What she meant was that he had some form of autism but not the type that the general public was used to seeing. Today, there is no stereotype of a person with autism anymore, but in the days of “Rain Man” being the biggest reference, we were struggling to find answers and help.

I was blessed to work at a Christian school that allowed my son to sit in on classes with the Preschool teacher who was also my best friend. She and her assistant worked with him to gain more social skills and be more comfortable around other children. When he was old enough he remained in that class for another year. My father in-law was retired and he took my son out to see trains, and played games with him to keep him talking because his language skills were starting to spiral down, which can happen when a child on the spectrum is not stimulated properly.

We were renting from the mother in-law of my husband’s sister, and she also took my son, read to him, and spoke with him at great length about anything and everything that he loved. She studied and read books about children like him and offered him some at home early intervention that we had been denied because he did not fit the profile back in 1998. We are forever grateful to these wonderful people who took time to learn and to accept him instead of shunning him and saying that there was something ‘wrong” with him. Our parents, his grandparent’s support was priceless and we are very lucky.

There was no “special education magic room” for him, so many people stated that he should go to special education classes. In those days there were not many options for him. He would not have excelled in the classes they had in those days. In fact, he was not even accepted to them. He had excellent language skills. He could tell you about all the planets and name all of the Great Lakes by age 3. He knew so much about trains that he could give you information about the train by looking at it’s wheels. He sang beautifully, he had comprehension of the books that we read to him. He was not silent, he flapped his arms but was able to complete mathematics equations correctly in his head.

He needed Occupational and Physical therapy. He was denied so many services due to his high intellect. But he could not keep up with children in regular classes because he could not write as fast as they could. He also has O.C.D. which comes with the diagnosis, we found out later, and would continually erase his work because it was not perfect. He would fall behind the class and then meltdown, causing disruptions and disapproval by some teachers.

Through all of this, we did nothing but fight the system. The system that is supposed to help your child become successful but is actually designed to steal your tax dollars and deny your child appropriate services. I have spent 22 years fighting this system for my child. I did nothing but hear that he cannot get everything. Our reply was watch us. Why can’t he get everything? We pay taxes, he is a citizen, a student in our city who needs helps to be successful? Every child deserves to have what they need. Every child. I studied public law and learned that every child IS indeed entitled to a free and appropriate education in the least restrictive environment.

We appealed decisions. We took the Department of Education to court. I personally sat with teachers and read his Individualized Education Plan with them because they did not read it and did not understand why he was acting the way he was at times. We fought for and won, the right for a crisis management paraprofessional to be with him at all times. We fought for, and won, speech therapy because even though he could speak, he needed oral motor therapy and language. He needed social skills and group speech afforded him some of that as well.

When he began middle school, the job of fighting for his rights became so overwhelming, that I left my full time job and worked part time. This caused major financial stress for our family, but in the end, gave us a stronger, grateful and more resilient family. There are so many chapters and components to our family story, I will not tell them all now. I will say, as hard as those times were to go through, we are better for living through them.

All of our children are in college now. Our oldest, who is on the spectrum, graduated High School with Honors. His beautiful voice was showcased at his graduation with a solo performance which remains one of the best moments of our lives. He attends college part time, taking one class each semester. He normally does very well and requires little help from anyone in our family. He is part of a program that he helped designed which offers support for students on the autism spectrum. He completes his work on his own, and up until now has maintained a grade point average of 3.67 or better.

But this semester, due to the COVID-19 pandemic, his classes are remote only. He has been struggling with a lab that he needs to complete that does not have a true hands on component that he needs. He was very upset and I could not reason with him. I could not get him to discuss any solutions or options other than dropping the class, which at this late date would be costly. I also feel he can succeed at this class, but his mind was made up. He simply would not budge and had a terrible night. He had outbursts that I have not heard, nor seen in a long time. At this stage of life, he is 6’5″ and a grown man. He is not violent, but it is harder to deal with a man than a child. He was relentless in not discussing any solutions other than quitting.

Later on in the night, he finally relented and tried what I asked. Today he is happy and calmer, all set to try what I set up. However, it was not easy. No one outgrows autism, we accept it as part of our lives,we move forward, but it is there. It needs to be understood, it needs to worked with, but it does not disappear because they are no longer children. Most of the world forgets this. Children grow up to be adults. ALL CHILDREN. Autism grows with them.

I am currently on family leave to help set him up with some sort of live schedule in addition to his remote schedule. Things have changed due to the pandemic as far as his care. I will not leave just anyone with him. I certainly cannot and will not. Any worker who stays with him must be trained plus pass mandatory back ground checks and the like. This is life long. It grows with your child. I am not looking for sympathy. I am extremely proud at how far our son has gone in his life and how much he continues to grow as a man, as a person. I am proud of who I am , because of him.

My plan is to work with parents. To empower them. To educate them on how to find what they need for their children and get it no matter what those in charge claim. I could easily do the work for the parents but then what next? You will never stop advocating for your children, nor should you. A parent is the number one advocate, their biggest fan, and the greatest supporter a child will ever have. That does not end at 18, or 21, or 30. It does not end. This is your legacy, your statement you leave for the rest of the world.

My father passed away on April 2, 2020. He believed that we should leave every place you go to better than when you found it. My father was a long time Boy Scout Leader who followed the 12 points of the Scout law faithfully and lived by that and Lord Baden Powell’s words:

“Try and leave this world a little better than you found it, and when your turn comes to die, you can die happy in the feeling that at any rate, you have not wasted your time but have done your best.”

I hope that our struggle, our fight, and our triumphs have made a difference. There is much more to do.

My father indeed left this world better than he found it, and so shall I.


Back to School 2020

Social media and our news has been flooded with stories about how teachers are “afraid” to return to their classrooms.  The general public has either been incredibly sympathetic or cruel and judgmental.  Calls to dock their pay or calling teachers “chickens” and comparing them nurses in a way to shame them has been a regular occurrence on Facebook, Twitter, and other means of mass communication.

I have been an educator for 31 years.  I love my students.  I have former students who are old enough to have children who could be my current students.  I love reading about what they are doing, I love seeing photographs of their children and seeing what they are doing with their lives.

I have always loved the start of the school year.  The newness, the expectations,  how refreshed we all are after taking time out to breathe and regroup over the summer.  I excitedly plan my welcome back bulletin boards.  I think of new ways to set up the classroom and ideas to make the year more successful.

Teachers WANT to be in their classrooms.  They are NOT lazy.  They are NOT weak.  In fact, they are far from weak.   How many of you who are standing in judgment deal with 30+ people in the various stages of development, hormones raging if they are pre-teens and teenagers,  humans filled with anxiety or perhaps crying due to separation from their parents if they are younger, many who have zero interest in being in your presence, of sitting down and hearing what you have to say.  How many of you are spending 7 hours with those same people trying to motivate and guide them through materials and protocol that often you have nothing to do with deciding upon?

Teachers today are extremely micromanaged by others who in most cases, have either not been inside a classroom for years or have, in fact, never been inside a classroom.  How many of you are told how to do your job by people who have not put in the time to earn the degree?  Have worked hard and experienced what you experience on a daily basis?  Not as many as there were years ago.  Years ago, administrators had to have a great deal of classroom experience.  That is not the case anymore.    The loudest screams, the toughest criticism comes most often from parents who are struggling at home to handle 1-3 children of their own, yet they are the experts on how you should be doing YOUR job.

Teachers deal with this.  They look past it, they do yoga and meditation and have a glass of wine or laugh with colleagues, they rise above.  But this time.  Many cannot.  They cannot because they do not TRUST those who are in charge of preparing how this year and perhaps the future of their lives will look like.  They cannot trust corrupt systems who have repeatedly put their own personal interests ahead of the children of their city, or their state, of their town, of their own communities.

In addition to being a teacher, I have been a parent for almost 25 years.  I have sent in cleaning supplies every single year that I have had a child in school.  Every single year, and I have three children.  As a teacher, I have collected these supplies, kept track of who sent in what, so that I did not ask the same parent to send in more over and over.  I have replenished out of my own pocket every single year, the same as countless other teachers, all while supplying my own children’s classrooms.  After all of these years of supplying out our own pockets, how are we to trust that supplies will be readily available for us to use when we are told that we are to ward off germs in addition to the work we are already responsible for?   We are put in the position to be sure the children in our care are safe every day.  Safe from injury, safe from intruders, safe from possible armed attacks while in school, safe from bullies, and now safe from viruses that we know little about.   Yes, we will do that.  We will continue to put our children’s well being first.  However, will YOU supply us with the tools we need?  Will you be honest with us when there are problems?  Will you be honest with us about the true safety issues facing us?  Will you be honest with us about where the money that is supposed to be used to help us and our students have a better year?  The answer is a resounding NO.

The answer is NO.  It is no in the New York City Department of Education although, they will tell you that the answer is YES.  It has been NO for many years now.  They simply do not put the needs of our city’s children first in any situation.  If they did, we probably would not have been hit with as many reported illnesses or deaths in the school system as we were.  We would not have had to make as many changes as we have to now.  Our children should ALWAYS be learning in classrooms with smaller class sizes.  They deserve the attention a teacher is able to give them in a class of 15 rather than a class of 32 or more.  Studies show that smaller class sizes are 100% more beneficial and conducive for learning.  It is a no brainer.

But instead.  they take our money, they hire their friends.  Friends who are not qualified to be a part of your child’s education.  Have no business being involved because they are clueless about the process and the appropriate needs of students.  they hire themselves, Yoga gurus.  They hire outside vendors at high prices to do jobs that they themselves should be doing.

They have had since March to take action.  But they have not.  They have tossed things together and left principals standing there holding a half-empty bag of ideas most of which are unusable in the schools that principals are trying to get up and running again.

In addition to all of this, we have the media reporting stories to rile up the masses rather than inform them.  To either anger people or frighten them, it depends upon the day.  No one truly has any idea how dangerous this virus is because of the stories and the number change depending upon what is happening in the news that day.

Make no mistake.  People WANT some normalcy.  Anyone who believes that the average person wants to sit in their house day after day with no contact with anyone, no hugs, no restaurants, sports with no fans, no indoor dining, no big weddings or concerts is wrong. The average person likes to the freedom to come and go as he or she pleases, without worrying about whether they brought their mask, without concern of whether they break a new rule.  Teachers want to teach IN their classrooms with children in front of them,   Please stop ridiculing them.  Please stop vilifying them.

Are some teachers afraid?  Yes, of course, this is the case.  Many have some health issues, have a family member with health issues, have known someone who has died from the virus, or perhaps simply,  like me, have been in the field long enough to truly feel overwhelmed and exhausted by all of the new training and rules that will ultimately distract us from learning.    I am over 50, I have an autoimmune disease and a disabled son, whose world has been tossed and turned as well.  So I am on leave at this moment trying to make some sense of things for him before I look to return to “normal”.  But what is my new normal?  I do not know yet.  In fact, very few people know what they will be doing tomorrow, never mind a new normal for the school year.

Let’s support one another.  Let us recognize that no one can trust what we are hearing or being told right now.  We all need to keep open minds.  We all need to care for each other.  We need to not judge.  We, as humans first, need to stand together.