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Autism Ages Out into An Endless Summer

Posted May 01 2012 12:00am

Natalie grad 2 By Natalie Palumbo

My older brother Anthony is a senior this year.  In our world, this means he's 21 years old, and aging out of the moderately functioning self contained special education classroom at Lexington High School.  Anthony has low-verbal autism.  I'm 18 years old, and just completed my junior year of high school.  I'm Anthony's little "big" sister, and now a rising 12th grader.

As the end of the school year approached, my overwhelming feeling was dread.  It felt like a dead end for us as a family. Graduation meant my brother would be home fulltime and my mother would have to manage him without any breaks. The school setting gave Anthony a world connection and the rest of us leeway to maneuver obligations without managing autism.

It was nice to see Anthony dressed in his cap and gown. In many ways though, it felt less like a ceremony and more like a forced exit. For my brother, time is not a passing concept nor something to be measured; it is a place. I am forever baby sister.  In his mind, places we’ve lived are still ours and everything is static.  Nothing changes. Even though Anthony pleaded to stay home every day this year, he does not understand school for him has ended.  He thinks he has graduated from his class and will now go to “art class with Natalie” where he thinks I spend my entire day. 

I couldn’t really think straight at Anthony’s graduation. For everyone else, graduation is a victory and an opportunity to advance in the world. For us, it felt like an abrupt end to a way of life. I was comforted by the love and enthusiasm that surrounded Anthony by the many teachers and administrators.  For many students, these staff members are to be revered and feared.  For us, they are playful adults that nurture and protect our vulnerable family member. It was hard choking back tears. The ceremony was dignified and thoughtfully planned for the students. Anthony’s graduation ceremony was in the school’s performing arts center.  It was so much more peaceful and intimate than trying to manage autism in a large arena filled with the entire graduating class. We were more relaxed knowing that my brother would not be subject to intolerance and misunderstanding. Even though it was lovely, I couldn’t help but wish for more for my brother. I imagined my life if everything had been typical.  I wished he could communicate with me like other kids. I wished Anthony could give me advice and vow to protect me. I felt sad that there were no opportunities left for Anthony except what we must invent for him.  All guidance ends now.   

I anticipate my parent’s lives being even more restricted now. My brother will need fulltime Natalie grad supervision since he will not go to school anymore. I anticipate my mobility will be restricted as well. I will need to stay with my brother when my parents are unable. I will definitely miss having Anthony at school with me.  I will miss seeing him in the hallways, and volunteering as his buddy on school trips with his class. We’ve been going to school together since I was three.  I’m not sure how I will cope with my loneliness, but I am relieved to know my brother will be home safe from intolerant strangers and insensitive students. 

I could not get excited about other people’s graduation and college plans wholeheartedly. I kept my heartache to myself. It was nice to hear their plans, but it upset me to know my brother’s life was not headed in the same direction as my peers. I haven’t shared this with anyone because I don’t want them to take my upset the wrong way. Some of my peers might read my sadness as a lack of support for their accomplishments. Honestly, I hate that my brother is not going to be in school with me anymore. Everyday life has just become more difficult to handle and work around. 

Seeing my handsome brother in a cap and gown gave me strong but conflicted feelings. On one hand, it was wonderful to see Anthony play the part of a graduating student. There was a sense of sophistication and anonymity that Anthony had wearing the cap and gown that unifies the graduating class. Anthony did not understand the significance, but was excited that there was celebration around him. He interacted playfully with the administrators who attended. He was focused on his school issued iPad to cope with being over stimulated by his high energy surroundings.

Anthony was over-excited by the entire event. He was happy, almost aggressively so at some moments. The flip side was him echoing loud angry dialogue to match the surrounding energetic tension.  This was stressful for my family, especially since he was over-stimulating other classmates. This prompted my mother to change his medication protocol for the summer.  Managing autism never takes a break. 

One of the most wonderful surprises was seeing Anthony’s first high school teacher, Mr. Larry James.  Now retired, Mr. James came to see students who began high school with him graduate. His presence was comforting for my whole family. When we moved to South Carolina, my parents sent Anthony’s IEP ahead to find the best school services for Anthony.  Mr. James was recommended by name, and was the reason we settled in Lexington. The teachers put together a photo story of the students, and Anthony’s photographs were beautiful and joyful. As a tribute, each teacher wrote an original passage for each graduate based on the book “Oh, The Places You’ll Go” by Dr. Seuss. Anthony’s teacher Ms. Jennifer Brucker wrote,


Oh, the places you’ll go! You’ve saved your dollars for this,
We know you want to work for Hulu or Netflix

You dazzle us all as you drink Cherry Coke,
With movies and shows, Quote after quote,

So with your favorite foods, and IPAD in hand,
Continue to go bowling, for there you are grand.”

It is hard to describe how my parents felt. On one hand, they loved the honesty of the ceremony and appreciated how dignified it was. Everyone who spoke cried--everyone. They all seemed sad to say goodbye. District officials spoke with the recognition of the somber aspect of saying goodbye.  Rather than pretend that this graduation mirrored the rest of the student body, they simply acknowledged that each graduating student was leaving with more skills than they came with. My mother sobbed heavily and was grateful she did not have to hide her grief. This ceremony meant an end to Anthony’s school life and any claim to normalcy. My grief was different.  I mourned that Anthony and I could not graduate together. We could have walked the stage together if he had one more year.  I expected a minimal ceremony, but they complimented the event with music performed by a small selection of orchestra students, and a musical slideshow featuring the students enjoying the community. My favorite Anthony moment was when he walked across the stage. He just took the diploma and kept right on walking! He felt no social pressure to savor the moment--we laughed at Anthony’s ability to always be Anthony even at his own graduation.  And then we cried. 

My greatest moment of sadness came from the reality that this is Anthony’s last farewell. We have been in school together since we were toddlers, and our childhood was ending. What made me happy was to see Anthony interacting with his classmates. They teased each other and made each other laugh. They interacted much the same way as my peers joke around and communicate. I saw my brother as his own person, and it made me ache for more. 

I picture my brother’s life after high school staying home with my parents like one endless summer break.  My mom promised we would meet Anthony’s class on trips so I would not miss those moments my senior year.  For my last year of high school, I plan to focus my attention on my art portfolio.  I am hoping to be accepted into Ringling College of Art and Design. I want to study animation and film making. 

I picture my own graduation being held in the same large arena where it has always been. I want to inquire about space in a green room so Anthony can attend the event and not disturb anyone else with his echolalia. I want my whole family to be able to attend without the fear or stress of managing autism. No milestone in life can be planned without autism coming first. I even stress about how I will get married one day and be able to accommodate my brother. That is a stress better addressed in a future article. 

For most families, graduation is a victory. For my brother, graduation is an ending. I reflect on this event with agony.  There needs to be more consideration for families like mine, and for people like my brother. Anthony will never pursue a career, or face a day without needing support. Anthony’s enduring energy and self-directed curiosity needs to be contained for his own safety. My mother faces a life as his fulltime caregiver. Her only relief will come from me. I have so much to be successful for. 

As I prepare for my senior year, I want to extend a special thank you to Assistant Principal, Mr. Joedy Moots for bringing so much laughter and happiness to Anthony.  From the moment I stepped into high school, Mr. Moots referred to me as “Anthony’s little sister.”  I loved knowing my brother’s existence mattered, and that he was honestly cared for. Mr. Moots loved my brother’s sense of humor and his “Anthonyisms.”   I felt happier every day knowing that. I can’t imagine what my high school life would have been like if Mr. Moots hadn’t been there looking out for Anthony and me.  Thankfully, I will never have to know.

Natalie Palumbo is a high school student, younger sister to a brother with autism, and Contributing Editor for Age of Autism. Visit her art website at Deviant Art.

Posted by Age of Autism at May 31, 2012 at 5:45 AM in Natalie Palumbo Permalink

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