This article was originally published in the magazine, The Autism File.
“Mom, in class today, we read a story about a younger brother who had an older brother with special needs” said JP, my younger son, on an early fall day last year.
“Wow,” I answered. “Was it a good story?”
“It was pretty good,” he stated.
Then JP’s attention shifted to his homework and how it would need to be done quickly because of basketball practice. JP attends a private Christian school. After struggling with our public school district to get a proper educational plan for his older brother, Eric, my husband and I decided to place him in private school. When JP went to school, my husband and I wanted to give him a little respite; a place where he could just be JP. Not JP, the brother of a child with special needs. He was just a few months old when Eric was diagnosed with autism. Until JP went to kindergarten, he had grown up in a doctor or therapist’s office. JP had been Eric’s typical role model during years and years of ABA. His early childhood, from what I can remember of it, was unusual.
Despite the unconventional early childhood JP experienced, he is now very much a typical boy. JP loves sports, both watching and playing them. He has many friends and does well at school. Sending JP to private school, a place that has nothing to do with autism, may have been one of the best parenting decisions my husband and I ever made.
Two weeks after our car conversation, I find myself at the first parent-teacher conference of the year at JP’s school. JP’s teacher is a doll. She has been teaching elementary school for over 30 years and is loving, compassionate, funny and smart. All the things you want your children’s teachers to be.
As I wait in the hall to be called into the classroom, I start to feel a little guilty, maybe I should amend that, I start to feel VERY guilty as a parent. I begin to realize that I spend very little time at this wonderful school. I drop JP off and I pick him up. I talk to other moms and dads in the three to five minutes I allot for pick up. Then, with great efficiency, I am gone. Why? Because I have to pick up Eric fifteen minutes later and I am focused on all things autism. It’s at this point I hear that little voice in my head that reminds me that I have two children and that both of these children have needs. That guilty feeling was really starting to creep up on me as I sat on the student-sized chair in the hallway.
JP’s teacher calls me into the classroom. I start to panic and wonder, “Is this sweet woman going to chastise me because I am not a room mom or a weekly volunteer?” I get more nervous. JP’s teacher tells me to sit down and starts the meeting off with a prayer. Quickly my mind races, “Oh no, oh no! She is going to pray to God that I pay more attention to my younger child. She is going to ask God to send me better parenting skills and for the good sense to realize that I should be volunteering more often.”
Luckily, my worst fears did not come to light. During the prayer, she thanked God for JP and his contributions to her class and then prayed for a wonderful and productive year. It was as lovely of a prayer as there ever has been.
However, my absence from the classroom did spark the first conversation of that parent-teacher conference. JP’s teacher started off by saying, “I did not know that you had an older child with special needs.”
I replied, “Yes, my son Eric has autism. Did one of the other teachers tell you about our family situation?”
She answered, “No, JP told me. Actually, he told the whole class.”
Shocked by this information, I said, “I don’t understand.”
“A few weeks ago we read a story about a younger brother who had an older brother with a disability,” said the teacher.
“Oh yes,” I stated, “He told me about that.”
“At the end of the story I asked the class if they knew anyone with special needs. JP raised his hand first and started talking about his brother. He spoke so nicely of his brother and even choked up a couple of times while talking about him. I was very moved and so was the rest of our class. It was a very special moment in our class and he started a conversation that let the other children talk about people in their lives with special needs,” she said nicely.
Hearing that my younger son got choked up while describing the difficulties his older brother has encountered through the years made tears well in my eyes. I was overwhelmed with emotion. I don’t know if I have ever been so proud of him.
Because JP is not at our neighborhood school, I would bet that the overwhelming majority of the kids in his class had no idea that our family is “special.” When JP answered his teacher’s question about knowing anyone with special needs, he was being quite courageous. It’s tough to announce to your classmates that your family is different. I know this first hand because I was too afraid to do it myself.
On February 14, 1979 my thirty-one-year-old mother lost her battle with breast cancer. I was in the third grade and my younger sister was in kindergarten. The loss of my mother was beyond tragic. Everyone that witnessed my mother’s illness and subsequent death says it was one of the most traumatic events they ever lived through. As much as my family would like to pretend like the emotional suffering is over, not one of us is or ever will be totally over her death. I think it took until the end of summer for that stunned, walking-wounded look to leave my sister and my faces.
One of the last things my mother was able to do before she became totally incapacitated was enroll my sister and I in a private school. I often wonder if my mother knew how sick she was that fall. I believe she may have had a premonition that the gift of a fresh start at a new school the following year would be exactly what her girls would need if she were not around for us.
When tragedy strikes a child, well meaning adults go out of their way to be extra sweet to that child. The adult feels good about the special attention they bestow upon this poor little soul but the child, at least this is how it was for me, just wants things to be normal. Which meant I was constantly thinking, “Please don’t single me out, nice adult. I just want to go back to playing with my friends.”
I think my mom must have witnessed this phenomenon happening to my sister and I many times from our friends and family while she was ill. I am sure she knew we were getting pitied at school too because news of a mother with cancer spreads like wildfire. I started getting stares and forced smiles from every adult after the news of mother’s illness was out. But after her death, the “special” treatment became almost unbearable.
I remember starting my new school that fall. I couldn’t wait. I figured I had a good chance of being a regular kid in the fourth grade. My classmates and their families wouldn’t know that my mother died. Which meant I wouldn’t get stared at like I was a modern-day episode of Little House on the Prairie.
After a week or two, I figured out that most of the faculty knew that mother had died just months before. Lucky for me, they treated me normally. However, it was evident very quickly that the other kids did not know that I was a child that just went through a tragedy. I was so relieved. These kids thought I was normal. I breathed a huge sigh of relief.
It was at this time I started my charade that I was a child from an intact family. I didn’t really lie to anyone about my family situation. I was just evasive when moms were mentioned. This tactic worked beautifully into the winter until my finger got infected and my cover was almost blown.
On the first anniversary of my mother’s death, my father took my sister and I to the cemetery to visit our mother. Adjacent to my mother’s grave is a pine tree. When I saw her marker, her name was barely visible. Pine needles covered it entirely. I quickly started clearing off the needles. One needle lodged under my fingernail. The pain shot through my finger like an arrow. I pulled the needle out but part of it broke off under my nail. Not wanting to bother my father because he was having a hard time that day, I said nothing. I just hoped it would just get better.
At school the next day, I was playing with my friends when all of a sudden my finger started hurting. I looked down and my finger was red and swollen with puss. I had to go to the nurse. A couple of friends came with me and asked how I hurt my finger on the walk to the office. I wouldn’t tell them what really happened. I did not want them to know that I hurt myself while cleaning off my mother’s grave. My story to the nurse was that I had no idea what happened. I just looked down and my finger was swollen. For some reason my friends and, more importantly, the nurse bought it. My need to be like everyone else was so strong that I had bent the truth. I just couldn’t bear standing out as the Becky, the motherless daughter amongst my classmates again.
And that is what struck me that day at the parent teacher conference; JP volunteered the information about Eric’s autism. He had the courage to say to his class, my family is different from yours. I wish I had the same bravery he did when I was his age.
The relationship between Eric and JP is not idyllic. They fight. JP is often annoyed by Eric’s behaviors. The injustice of steeper consequences and higher standards for the younger brother bothers him a great deal. I have heard many times, “I wish I did not have an older brother with autism.”
At times hearing those words breaks my heart and at other times, I know it is hard for him to be the younger child and the older child at the same time, so I don’t get too upset at him. I know there are going to be tough times ahead as both boys are now into their teen years. But I remain optimistic. If JP keeps up the courage he displayed in the fifth grade for the rest of his days, I have feeling that will take him far in his adult life.
Becky Estepp is the mother of two fantastic boys. Her oldest son, Eric, is a teen with autism. Becky serves as the Communication Director for the Elizabeth Birt Center for Autism Law and Advocacy (EBCALA). She has worked with the press extensively on issues related to autism and vaccine safety, including appearances on: Fox News, Good Morning America, ABC’s World News Tonight, and CNN. Becky lives in San Diego with her husband, Jack and their sons.