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How I became a strong person
The person I truly need to thank
Much of my childhood was spent hiding behind my mother. I was very shy and would prefer to play quietly in my room then be part of a large and noisy group. As a performer, I would be sure that I was part of the chorus, rather than a soloist although I certainly had a good enough voice to perform alone. I was rarely given a speaking part in a play, not because I did not have the talent, but because I choose not to be the one who stood out on stage. These were my choices, I would shake at the thought of my solo piano recital performance, although I never made one single mistake during my pieces, the mere thought of taking the stage alone, was terrifying.
I loved being a teacher because I was comfortable speaking in front of my class, although even then I would have "stage fright" and sit up worrying for the last few nights of summer vacation. I despised parent teacher conferences because I did not like to be put on the spot when speaking to parents. I never had a problem once they began, however, the anticipation was awful!
So, how did I end up standing in front of hundreds of people speaking my mind when the Chancellor of the New York City Department of Education visited my borough? Trust me, this was not an easy journey. That night, I shook for twenty full minutes after I was finished speaking. I should be a natural. My father has been speaking in front of an audience for years, he has been a Scoutmaster and leader of many activities. My mother was PTA president for many years, plus Museum Guild and PTA Federation president. My maternal grandmother ran a newspaper for her Church and Senior center and was Eastern Star grand Matron. My uncle was Community Board Chairman for many years and my aunt was an excellent teacher who has no problem organizing and running several committees that better the public.
I married a man who is often in front of a crowd. He seems quite natural. He was a basketball coach for many years and of course if you know this sport, the coach is often watched by the crowd as well as the players. My husband is quite the performer as a coach, it is indeed effective therefore it continues as he has moved on to coaching and running a soccer club now that he is a parent. He was named Director of the year and is a big part of running our local soccer league that oversees 6000+ players.
With all of this in my life, one would think that I could easy stand in front of a large crowd and be very comfortable. This is not the case, it never was. Although I completely enjoyed my years as a Glee club member in grammar school, middle school and then High School, it was not easy for me to get there. It is even tougher when you are there all on your own.
In 1995, I gave birth to a baby boy who, although 2 months premature, was absolutely beautiful and perfect. As he grew, he has some delays due to his premature delivery, however, he was extremely intelligent and craved knowledge at every turn. He spoke at an early age and taught himself to read by 13 months. As an offspring of two teachers with Master's Degrees, it did not seem odd, it just felt to others that we were pushing our "geeky-ness" on to our child.
But at age two all of this changed as my son began to regress and turn inward socially. In the 1990s the diagnosis was either autism or "on the spectrum" which at that time truly did not have the definition it has today. Autism still had the stigma of the child sitting in the corner rocking or walking around like the savant Rainman sharing random facts and never making eye contact or showing emotion. It was not the diagnosis I was able to hear nor was anyone close to us able to understand or accept. Schools were ill equipped and teachers were not understanding of our issue with not truly having an appropriate place for his abilities plus his disability. Our life as a couple fell apart as we struggled each day to make it from sun up to sun down living with the heart break that I often still feel when I look at my oldest child. Our second son lived an early childhood of confusion and of parents who rarely smiled. He was our salvation at that time, he had the ability to make us laugh just by being who he was, 15 years later, he still has that gift. He was labeled though. He needed so much attention because of what we were experiencing at home and few understood his desire and treated him as a behavior problem or simply ignored him and asked only about our older boy. It was a devastating time, it is very hard to even think about those days, which is unfortunate for us since we should be looking back at the memories of our little boys and smiling. Maybe someday, not yet though.
In the middle of turmoil, we received a wonderful blessing in the form of our daughter, who is our youngest. Her name means "Pure Joy" and that she is. Rarely an unkind word falls from her lips. She is eager, bright, caring, friendly, intelligent, beautiful and creative. My oldest son upon hearing about the birth of his little sister said "My life is now complete. I have a mother, a father, a brother and a sister." She has indeed been a wonderful present for him because she has far more patience with him and his behaviors than his brother. His brother has long given up wishing that one day his big brother would be like everyone else's big brother. He does accept him for who he is and takes joy in the differences that make his brother special. My daughter will spend hours talking and playing video games with her biggest brother which delights him to no end. He has few friends and I do believe if asked who would spend time with if he had a choice of anyone in the world, he would choose his little sister.
So what has made me strong? My oldest son has given me that gift. Hands down. I have been told many things over the past 17 years about my son. I have chosen to believe less than 3/4 of what I have heard. It has taken me many years to do so, but I now know that if he is to accomplish what he needs to do in this life, he will do it with my help. We cannot rely on the government or on programs that have been established for people "like him". There is no one like him. He is an individual. He is a "one of a kind" master piece that was created and given many gifts. He needs to be able to use those gifts.
So therefore, I have abandoned the career that I studied for for many years. I have walked away from a salary that my family desperately needs. We have made many sacrifices that other families have never had to make. My son is my career. Finding out what is out there and getting it for him is my career and my life's work. If there is not a program I will make one. In any way I can. Advocating for him has defined me as a person. There is not one moment in my day that I do not have a piece of my heart that aches for him to find a place where he is happy and comfortable. That is my life's goal. I want him to be happy.
Yes, I do have two other children. Trust me, they are in my heart all day, all of the time as well. I am super soccer mom and I rarely miss one event that they are a part of. I will go to the ends of the earth for them and I thank God each and everyday for sending these two to my life after having my oldest. Some parents did not have other children after their one was diagnosed, but I had two more. I am very blessed to have them in my life. They are good people and are who they are because they have grown up as siblings of someone with special needs. They know what it is like to have to a compromised life. They appreciate the small triumphs and they enjoy the simple pleasures, like laying on their backs and looking at the stars each summer when we go on vacation near the lake. They know that after we are gone, they must make sure that their brother is never harmed and always on the right path. They are okay with this, they know he is not a burden, he is their brother and they love him.
I have been fighting for 14 years to make sure that every possible service available for my son, becomes part of his education plan. Trust me, it is not an easy task. I have sent letters, emails and even spoke to the Chancellor and I asked this simple question. "Why?" Why would they make things so hard for us? It is already difficult to get out of bed some days knowing that I will have to battle to get him up and dressed, make sure the teeth are brushed, he takes all of his school items. Then pray all day that they phone does not ring with his school telling me about some behavioral incident that occurred which happens several times a year. I liken my telephone to the umbilical cord that still keeps the two of us attached on a daily basis. I refuse to accept no for an answer when It comes to my son. I truly believe that he has a future other than spending all day in a Dayhab facility. I love these programs, I believe in them, I feel they are absolutely necessary but I want him to have a chance at more. I have noted that other professionals feel this way as well since there are growing numbers of the disabled attending college classes. Colleges are opening programs for the disabled and they will be able to join the workforce as some companies are extending themselves to welcome them as workers. There is indeed hope.
So every time I get knocked down, I think of crawling back into the quiet little place I used to love to reside. But I don't. I find solace and quiet time with my walking, my prayers and my writing. I think about what has passed, what can be and what I want to happen. Sometimes I just think about nothing in particular. My brain hurts at times. We all need a breather.
My partner in crime through all the battling for my son has been my husband. We have worked very hard to repair the damage that we did to our marriage in the early days of the diagnosis. I look at our wedding pictures and think about those two very young, fit and attractive individuals. Today's couple are far bigger in girth than the young couple and the grey hair and worry lines have started to pop up more and more. However, I would not go back 20 years. We are far more stronger in our marriage, our love, our friendship and our relationship than we were in the early years when we were head over heels in love. That is not to say that we are not in love now, but wisdom, experience, heartbreak and tough times will either make or break a couple. We are a statistic. We are one of those couples who are able to stay together after the diagnosis. Trust me, it has NOT been easy. However, there is no way my son would have gotten the help he needed if we had not mended our lives and fought this battle together. So truly, we have him to thank for saving our marriage.
So many people say that they understand us. They do not. Even if you have a child with the same diagnosis as ours, you are not in our shoes. Likewise, we are not in your shoes. We can talk, compare notes, commiserate and help each other, but we are not the same. No two cases are identical. So many people are no longer part of our lives because they choose to treat us poorly due to the diagnosis and judge us on how we have handled the issues in our lives. This is not helpful, nor is it necessary for us to be around. So they are no longer a priority to us, as we were not to them.
Seventeen years ago, I was terrified, I had given birth after laboring two weeks in the high risk department of the hospital to a tiny premature little boy. He was hooked up to many tubes and spent time masked under the lights to cure his jaundice. I had to leave him each night and go home empty handed. I have known heartbreak from the day he was born. I have also known complete and utter joy. He was and is beautiful. He is also a unique individual. He is not perfect by a long shot. He is often very opinionated, stubborn (gets that from his dad) and forgets to brush his hair. He chews on all of the pencils in the house, my younger two have taken to hiding theirs, he eats all of the potato chips and cookies if I keep them in plain sight. He can be very lazy if I allow him to be. However, he is likable and many find him entertaining. He has knowledge of so many subjects that my daughter has said that he is "better than google". Yesterday he gave me a lesson on the history of potato chips.
I thank him. I am so much stronger than I would have been if he had not come into my life. He has given me the will to fight battles that have not only helped him, but have blazed a path for other students that followed after him. He has helped me reach out to others who have similar situations so that I finally have a true network of people I can trust and vent to about our daily challenges. His father and I have a stronger marriage than we ever would have due to him. He has given his siblings the gift of tolerance, understanding and patience. They have no issue being friends with others who have needs, they have compassion and they are dependable. We owe much of who they are to who he is. Our family is truly shaped around him and what we have had to do to support him as a person.
As the day of his graduation draws closer, I am filled with both pride and anxiety. I do not know what his future will be filled with. However, I feel strong enough to face whatever comes our way. If I do not like the choices, I will create new ones. He fills me with the desire and the strength to more forward, only looking back on our past as a stepping stone. Thank you my son, for everything. I love you.