Forever Baby Sister
Happy Holidays. I am 20, a sophomore motion designer at Ringling College of Art and Design, and the only sister to an older brother with low verbal autism. My brother Anthony is 23 years old (almost 24), and he aged out of school at 21. I was recently asked how Anthony was doing being home full time with me away at college. I phone home regularly to make sure my brother is alright. My mother always responds the same way, “He prefers you, but he settles for me.”
Anthony misses me. In his mind, we haven’t aged at all. We’re still little kids. Time is irrelevant. Even though we moved ten years ago to the southeast, he still idealizes our old house in Maryland. He thinks if we go back, the house will still be ours, and all of our stuff will still be there. In addition to being very echolalic, Anthony has persistent Obsessive Compulsive Disorder. He obsesses over going back to Maryland, and requests to go several times a day, every day. I call home so Anthony can hear my voice. Anthony is low verbal, and not conversational. Mainly, he’ll just recite his always revised Christmas list, which gets longer with every passing year, or chatter about the movie he is planning in his head. Anthony will read me his casting list, which consists of everyone we know playing themselves. I just listen, and tell him it’s great. It makes Anthony happy for me to acknowledge his lists.
With my being away, Anthony has gotten very attached to my mother. He wants her to sit in his room while he plays games, even if she’s not interacting. My mom theorizes that he misses me being in the house, and settles for her being there instead. He marks on the calendar when I’ll be home again, and reminds my mother constantly when I will be, “home from Ringling”. Under the circumstances, he has dealt with my being away very well. Anthony has visited the campus, so he knows where I am. I’ve been drawing and pursuing art since I was 10 years old. Anthony associates art with me. He seems to innately understand that I belong in art school, and so he tolerates this major change. Anthony and I have always been close, and he inspired me to draw when we couldn’t share words.
Even though being accepted into Ringling was a dream of mine, I worried about leaving Anthony behind. I always enjoyed how much he loved me, and was afraid being away would change our close bond. I thought that if I wasn’t there every day, he would lose his attachment for me, and forget who I was. My mom is his full time caregiver. Anthony has his own agenda, meaning his desires and interests are forever “in the now”. He is not conversational enough or socially aware enough to work outside the home. He would need someone constantly monitoring him to keep him on task, and ensure his safety. He would feel no obligation to attend to work, even with payment as an incentive. These concepts are outside of his thought processes. If he didn’t want to do something, he just wouldn’t do it. My mother is concerned for Anthony’s safety and well being, so she is home with him full time. Anthony is forever on “summer vacation”.
When I see his attachment for my mom during visits, I feel sad. I liked being his favorite person, and I don’t want to lose that. My mother assures me that Anthony chatters about me all the time, and looks forward to seeing me. She always says that the best thing I can do for Anthony is focus on myself, and do my best at college. When my parents are no longer able, I want to be Anthony’s caregiver. Being successful is very important for both of us. I try to ignore my sadness and focus on my studies. It is a great distraction for me to do well in my classes. It makes me feel like I can truly be successful, and support Anthony in the future. While I’m working hard in my classes, I stay in touch hoping that Anthony won’t forget me. When I hear him reading his many lists to me, I am happy he didn’t forget. I love being Anthony’s “Forever Baby Sister”.
Natalie Palumbo is a Contributing Editor to Age of Autism.
Happy New Year, Natalie! Always love to hear from you. You are such an advocate and such a sweet sister. Blessings to you and your family.
Love,
Teresa, Megan and Mary
Posted by: Teresa Conrick | December 30, 2014 at 07:44 PM
Well done! *clapping loudly* for you, Anthony and your family. Thank you so much for sharing as we look forward to the bright lights that await you All.
Posted by: Zed | December 30, 2014 at 09:02 AM
Happy holidays, Natalie, and thanks for sharing a piece of your time with your brother with us as well!
Posted by: Jeannette Bishop | December 29, 2014 at 11:20 PM
I was wondering how you were doing, Natalie! I hope our family is lucky enough to have siblings who are as loving as you.
Posted by: beth johnson | December 29, 2014 at 09:17 PM
Natalie Palumbo is an incredible young woman. She has an extraordinary dedication to her autistic brother Anthony and his well-being. I can't even imagine what she'll end up doing as an advocate for this generation of disabled young people. Anthony is very lucky. He has wonderful parents and he has Natalie. We at Age of Autism are so fortunate to have connected with her.
The family members always understand autism first hand. They've grown up knowing the toll it takes on parents.
My concern is for all those who have no one like Natalie in their lives. There is no parent, even ones with high functioning children, who aren't deeply concerned about what's going to happen when their children are adults and they're no longer around to care for them. The simple reason for this of course is the fact that NO ONCE HAS EVER BEEN ABLE TO SHOW US A COMPARABLE RATE OF AUTISM AMONG ADULTS.
All those health officials who so reassuringly tell us the no one knows if there's been a real increase in the autism rate every time the numbers take another gigantic leap higher, NEVER HAVE TO SHOW US WHERE THE ADULTS ARE NOW.
Why can't parents be shown the 40, 60 and 80 year olds with autism living productive, happy lives right now? It's a really simple concept. It would end the controversy over vaccine IMMEDIATELY. If autistic adults in their 60s, 70s, and 80s are out there somewhere, then there is no link to the dramatic increase in the vaccine schedule during the last 25 years. Everyone at the CDC should be scrambling to find all those undiagnosed/misdiagnosed adults.
Two years ago I first wrote about Natalie in a story entitled, "NOT Born This Way" Art Project Draws Attention to Version of Autism Often Overlooked - AGE OF AUTISM.
http://www.ageofautism.com/2012/04/natalie-palumbos-not-born-this-way-art-project-draws-attention-to-version-of-autism-often-overlooked.html
This is one great lady and I'm so proud to know her!
Anne Dachel, Media
Posted by: Anne McElroy Dachel | December 29, 2014 at 08:56 PM
Your whole family is blessed to have you, not just Anthony. We so enjoyed the day spent with your whole family last summer and Josh frequently asks when you are all coming back. The fact that you are so willing to care for your brother when necessary makes me want to cry. You have no idea how special you are. Happy new Year.
Maurine
Posted by: Maurine Meleck | December 29, 2014 at 05:17 PM
Wonderful. Love the video.
Posted by: Benedetta | December 29, 2014 at 04:48 PM
Always enjoy your posts. You are your brother are both very lucky to have each other.
Posted by: 4Bobby | December 29, 2014 at 03:37 PM
This made me teary-eyed, but in a good way. The loving bond you share is something many people never experience. Thank you for sharing this with us! It is beautiful to witness love like that.
Posted by: Aunt Sylvia | December 29, 2014 at 02:50 PM
Natalie,
The video is hilarious!
Thanx!
Posted by: Rosie Hild | December 29, 2014 at 02:45 PM
Wonderful to hear from you, Natalie!
Our daughter, too, wondered if her brother would remember her when she went to college (over 4 years ago now, she has since graduated). He did indeed remember her, and we made sure to always talk about her, she called and emailed him, we took him to visit her at school so he would know where she was, and she spent special time with him on her school breaks.
Now, it's his younger brother who is at college, and we are employing the same strategies so that he will remain a strong presence in his brother's mind and life, too.
You siblings are a very special group. Your roads are not easy, but you hoe them with grace, patience, and love.
May 2015 be a bright and beautiful year for you and your family, Natalie. Thanks for staying in touch with all of us here at AoA :)
Posted by: Laura Hayes | December 29, 2014 at 11:12 AM