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.