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« Autism One and a Young Man Going the Distance | Main | Skeptics Censor Skepticism of Paul Offit's Book »

Autism Ages Out into An Endless Summer

Natalie grad 2By 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 gradsupervision 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,

“Anthony,

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.

Comments

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When I worked at group homes for UCP there were adult programs at the local college that the clients went to (the ones who were verbal enough called it school). There were some profoundly autistic clients who still were welcome there. Of all the clients (various developmental deficits, not just autism) there was only one who "worked," but he was very proud of his job and his income.

Another thing that is very lost on the libertarians and ultra-conservatives calling for the elimination of social security are those who are disabled as they enter adulthood - removing SS removes any income to help pay to take care of them. Do they really believe that there will be a better standard of living (and lower cost of care) warehousing people who cannot take care of themselves in large hospitals? We've already seen what happens in cases like that (Willowbrook, anyone?).

Writing like yours is so necessary - it gives voice to the voiceless and quickly makes rhetoric like "everyone who wants to eat will be willing to work sooner or later" as uninformed and ignorant as it truly is.

Best wishes and prayer for both of you as you enter the next parts of your journeys.

Natalie,
Thank you for sharing. Our daughter who just graduated has a younger sister with autism. She has gone the opposite way and has removed herself from her sister's life. She cannot take the pain. I worry about her when she goes to college. I think there will be huge regrets. Your amazing for going forward and fulling embracing your brother, even with the pain.

Hopefully you have a respite care program in your state. Your parents also need to look into a part-time work program for adults with special needs. Other states age out of school at 18 or 19 so your state is fairly liberal in that area. Good luck to your brother and may god bless your family.
==================================================
Father of an autistic boy with a few more years before we are in the same boat.

Natalie, thanks for sharing your thoughts. It gives me great insight to what my typical child's thoughts are. In the day to day chaos of autism - our typical kids get lost in the shuffle - through no fault of their own - autism sucks!

I share your feelings and pain - its real apparent in my house since I have twins - one with profound autism and one typical (& identical) - the day to day differences are so stark - it's painful to think what might have been.

God Bless you Natalie and your family! We are also the parents of an adult son with autism who has a loving older brother. Our son aged out of school a few years ago and the adult world of autism is severely lacking in services. The few programs that exist have long wait lists that go on for years. The future will indeed be a tremendous challenge for us as a society, but most of all, for the thousands of families affected by this autism epidemic. Thank you for writing what many of us feel with so much love and compassion.

Natalie,

Very well written, I have passed on the link to our local groups / schools who should read it.

I assume your brother was "not born with Autism" (few if any are) Is there a vaccine story behind the story ???

I have two NT daughters and two autistic children, a boy and girl. While in school with them, they have had to defend them on numerous occasions. They volunteered in their classrooms when they really should have taken a break from autism. They are now mothers, and are doing great with my four boy grandchildren, all unvaccinted. They learn well crikkets. I love your maturity, which they too had to learn. You will do well in life, because you know the ups and downs are realities. Some kids will never understand when "things go wrong". I pray for your continued success. As a full time caregiver to now my adult kids, I have become their "friend for life". We do things together everyday, and I dno't have "real friends" in the true sense of the word. Yes, I get breaks, and sometimes go out with my civilian friends as I call it...but my thoughts are never far from home and hoping they are ok and safe. What a life? What life?

Thank you so much for writing this article, which quickly brought me to tears - good tears, for the shared stressful experiences. I'm so glad that you are here writing about a sibling's perspective so vividly.

I hope your parents can find some daytime activities for your brother. In my state there are day programs for adults with disabilities -- I hope there is something like that near you. Your brother needs and deserves to be out in the world some of the time, and your mother deserves a break without always having to rely on you. Like Anne always says, I just don't know how our society is going to cope with the tsunami of adults with autism.

VACCINES CAUSE AUTISM

Great piece of writing Natalie. You are already a college girl!!!! Your love for your brother is palpable and beautiful. Your heart is so big I can almost hear it beating here at my house.

The genuine quality of your words help to keep people like me to continue to look for help for your brother and my daughter.

We will win Natalie and God does hear your prayers, he hears all of our prayers.

VACCINES CAUSE AUTISM

how many thousands of us are there?? wonderful writing and frighteningly true. thank you

Natalie, thank you for writing this. You are wise beyond your years. Affliction has a way of maturing us. I see it in my daughter Sami. She too is her brother's big little sister. She is a very kind soul with a gentle spirit. I hope she when she reaches your age she has as much compassion for her brother as you do for yours. There are many that admire your character and many who wish they could be like you, that is, until they find out what you went through to become who you are. God Bless you Natalie.

It is good for me that I have been afflicted; That I may learn thy statutes.
Psalm 119:71

Natalie, you are like a solitary flower in a bleak landscape, a glimpse of a star to navigate a storm at night. You give us all hope for the future.

Natalie's heartfelt and excellent piece really strikes home with me. The fears she expresses for Anthony's (and her parents) quality of life are not unfounded. They serve to remind all of us that we ought to put aside differences we may have individually and on an organizational level to work together to provide or create adequate services.

While some groups like Easter Seals, the ARC and others focus on adult disability issues, their mandate is far broader than autism, and in some cases this mandate may not reflect the best policies for adults with autism. Other groups like NAMI, UCP, and others also have very broad and different constiuencies. Right now Autism Speaks and ASA are the primary voices on policy issues specific to adults with autism and I urge everyone to agree to disagree on some things and work together on adult stuff (where little disagreement exists). Great job Natalie.

Natalie:

What struck me most in reading and re-reading your piece is the moment Anthony receives his diploma. "He just took the diploma and kept right on walking!" I think your brother has it right. Families such as ours need more than the ceremonial pomp and unacceptable circumstances we're subjected to as our children "age out" of what little support services there are.

"Oh, The Places You'll Go" is another gem for thought. While I understand the kind sentiment behind the fond farewell, I still have to ask, who do they think they are kidding?" Oh, the places you'll go... you've aged-out so we don't know! There is a horrible tyranny of cheerfulness about the whole affair. Perhaps endurance should have been the prevalent theme as your family has endured and will continue to endure the unimaginable.

God bless you Natalie!

This is why I keep saying it is going to get even harder as my son gets older. I don't know how I am going to handle it frankly. And it terrifies me.

Natalie, there must be so many of you out there. Your words are so eloquent. I wish every politician determined to pretend that the current status quo is good enough could read this.

All you siblings growing up with your fellow brothers and sisters on the spectrum: at the same time your siblings are getting ready to age out of the system, you are coming of age to get involved in the political system. Your swelling ranks will soon be a source of great power in the coming years. If you are any example, your brother and those like him will truly benefit from the wisdom that life has forced on you.

Wow this really hits home...Thank you for sharing...My daughter and my son who is autistic ( and a couple of years older) graduated together from high school and just like you, the were together since elementary school. My daughther is now is college and my son attends an adult day program through United Cerebral Palsey of Northern CA and paid by the state of california. California has lots of programs that enriches the live of people with a disability (life skills, school, work, etc) I would think that such programs are available in your state? It is a great thing when they wake up witha purpose, may it be work or school.

((((Hugs Natalie)))) Anthony is very lucky to have you as a sister. We are in the same boat. As a mom, I try to look at the positives. I will always have a buddy for life. I don't like to do anything alone ~ hiking, going to movies, eatting out, etc. but I will always have my man with me. He is also non-verbal, so the conversation is one way. But I have learned how to do that over the years. It is a different world/life...but it is our world/life :-). Your mom is very lucky to have you. Even a 2 hour 'break' a week means the world. Are there any day living programs near you? I also think the future will change with more Autism friendly communities growing, where one day they will all have a place to go and still be happy. With 1:88 in 20 years, of adults, there will be no choice.

Natalie that was absolutely one of the most beautiful pieces of writing I have read. Because of the love that you have for your brother and having to live with this disability every day of your life, you have developed the wisdom and maturity to deal with people in all walks of life. You will go far in life and I am thankful that I got to you know you as a student when you were in middle school.

Natalie,
I scrolled down to the photo of you and Anthony, and then had to read your article through tears. Thank you for sharing, with such honesty, your feelings and observations about Anthony and how his autism and his graduation impact your family. You wrote about how your parents will now become full-time caregivers for him. Perhaps you and your parents would be interested in the efforts of parents around the country who are banding together to create group living environments for their grown children - in natural settings, integrating work and involvement with the community.

I wish you the best in your pursuit of your career in art. You're also a very talented writer. I visited your website and I really like "Making Sense."

This is the real national crisis we all face. There are now a million disabled children who weren't here 25 years ago. Top experts and health officials pretend this isn't happening. They have to. IF THERE WERE AN HONEST RECOGNITION OF WHAT AUTISM IS DOING TO OUR CHILDREN, THEY COULDN'T GET AWAY WITH THE ABSURD CLAIM OF "BETTER DIAGNOSING" --NO REAL INCREASE.

The officials and medical experts who keep telling us not to worry about one in 88 kids with autism need to also tell us where they'll all end up as adults.

Anne Dachel, Media

What a warm, eloquent, mature yet candid account of this important event in your life, Natalie. Thank you for sharing, and blessings to you, Anthony and the rest of your family.

He is very lucky to have you as his sister. You are going to be a great asset to the Autism community.

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