He wags his tail when he’s happy … my 17-year old brother that is. He has Asperger Syndrome. He’s a Senior in High School and I know he’s happy when he wags his tail like our puppy dog. His smile is so big that his gums show and most of the time he covers his eyes with his hands and I have to pretend I can’t see him. He’s playing hide and seek. Tail wag.
Being an older sister of someone with Asperger’s is amazing and fun and silly … and at times it’s hard. My little brother and I are 19 months apart in age. Sometimes people think we’re twins. We’re very close and we look out for each other. When he’s having a bad day, I’m his person. In school when he would get overwhelmed and run from the classroom crying and inconsolable, the school would release me from class to go give love. I’d sit and hold him in silence. This was my role. I had a job to do to sit and hold him, to be in silence with him, to let his tears fall as he let go of the overwhelming energy exploding in him. So I sit.
Our family approach to his diagnosis is to attempt to experience as many “traditional” things as possible in a thoughtful and calculated way. He’s a young adult after all … a young adult with Asperger’s … but a young adult first.
Prom is a “traditional” experience. I wanted that experience for him – the stiff and scratchy tux, the typical pinning of flowers, the fancy dinner and dancing to music that is too loud, the lights shining in your eyes, the crowded and sweaty room. These things that make Prom, that traditional passage in life, we wanted all of that for him. I don’t know who he’ll grow to become, how he will evolve, or where he’ll fit in life. But I know that it will be filled with challenges that will eventually lead to successes. And this Prom thing, that was one of them, and we wanted that for him.
Prom is in April. I start my planning in December, four months in advance. Aspies like a plan. My brother likes a plan. He needs to know what to expect. For Christmas I buy him a bow tie from the University of Oklahoma. I’m a student there, majoring in Special Education of all things. You see, he’s my inspiration. I want to be able to be there for my students for all of the small victories such as this. I explain the bow tie is to wear at Prom and that I want to be his date. Tail wag.
The weekend of Prom I leave school after my last class and drive the 8 hours home. Saturday morning I wake him up and give him hugs. He covers his eyes hiding from me, but I’ve already seen him. These are good signs. He’s happy and likely in the right frame of mind for a long, and over-stimulating evening. Tail wag.
Good sign. He puts on the rental tux shoes, not his cowboy boots. Boots don’t pinch your feet. They are worn and comfortable and secure. But he wears the tux shoes, the shoes that have to be tied. He still struggles to tie shoes. He hates water but he showers. He hates the feeling of water on his skin as it trickles down too hot or too cold touching when he doesn’t want to be touched. He’s wearing a stiff and scratchy and trim cut handsome rental tux … a tux that has been worn by countless others. He’s okay … he can do this … he is doing this. Tail wag.
He comes down the stairs, eyes closed, led by mom. I tell him he can’t see me yet. Truly, I just want this moment to last forever. I’m so proud of him. He has his eyes closed but his smile warms my heart more than anything in the world. You see, this moment is when everything is worth it. The stressful morning, arguments, sitting with him, playing red-light/green-light on our walks to school in elementary. All of the battles were won and this is going to be an amazing night.
Our “traditional” formal Prom dinner is in a fancy restaurant. A fancy restaurant with Mom and Dad at the table. Another articulated compromise. He has a traditional Prom dinner, but in a way that is comfortable. We do our normal family sharing of highs and lows. We call our oldest sister on FaceTime so she can share her day too. All normal, keeping it real in the family. It seems little but these things are important because we know he can only do so much socializing, only so much stimulation … only so much energy. He’s smiling and enjoying himself. Tail wag.
We have a fun time at the dance. I dance one slow and one fast song with him. We do the disco together in the middle of prom. The smiles are worth it. His friends are great. They know him and love him for who he is. The environment is safe for him. He sits at a table and plays games on his phone for most of the night and that’s okay. That’s down time. He’s withdrawing into the video game and tuning out the loud music, the lights, the scratchy clothes, the people and smells. I see this and he sees this. It’s an unspoken agreement as he manages his energy level. I see the brilliance in his actions in this small area of self-care. Tail wag.
I’m standing there across the room watching him play his video game. He looks up and catches my eye and I quickly cover my face. In the middle of his Senior Prom, a room full of kids who are pretty and popular and cool, and I’m standing in a beautiful gown covering my eyes, playing hide and seek with my little brother.
These moments are special. These victories are special. Asperger Syndrome is special. Asperger’s makes my brother special, but Asperger’s is just one of the many extraordinary things that makes my brother and incredible young man.
Being an older sister of someone with Asperger’s is amazing, and fun and silly, and always filled with joy. Tail wag.
Enjoy the journey.
Wag your tail.
Elizabeth Osborn is a Sophomore at the University of Oklahoma, studying to be a Special Education teacher with endorsements in both elementary education and Mathematics. She was born and raised in Des Moines, IA, is the middle of three children, and her younger brother Garrison has Asperger Syndrome.