Laurel Collins is a mom of 4 who lives and works autism 24/7. In addition to advocating for Andrew, 16 and about to enter 10th grade in a collaborative, she advocates for children with autism and their families in educational settings and presents a variety of workshops, including “How to Work Collabortively with Your IEP Team”. For two years, she served on the Greater Boston Autism Speaks Walk Committee. This post is part of our Ties That Bind blog series that highlights the shared experiences that people in our autism community have had. Have a story you want to share? Email us your blog submission at AutismSpeaksBlog@gmail.com!
My 16-year-old son with autism, Andrew, has two loves in his life: teddy bears and music. He likes the same Top 40 pop songs most kids like; it’s something he gets lost in. He dances with his head. Sometimes, his body is so rigid that other people think he’s awkwardly swaying. With padded headphones, which don’t cause him sensory discomfort, and an iPod, he does his own version of musical head-banging. He’s happy.
Over the years, we have included Andrew in nearly everything his siblings do. At 5 feet, 10 inches tall, he may no longer be the cute little boy I could scoop up into my arms during a meltdown in the supermarket, but he belongs in our community.
This year, he wanted to go to a concert just like his sisters always love to do. And I’m talking about a concert in a big outside amphitheater. Fortunately, we can sit in a box, which provides some privacy from being knocked over by other people dancing.
I called Diane, one of the managers of the venue, and told her about Andrew. She was excited he was coming to a show and invited him for a private visit the day before. It was a simple act of kindness. She took an extra step to set him up for success and feel as included as everyone else at the venue.
Andrew, our behavior therapist and I made our way to the music venue on a Friday. Andrew was clutching his oldest and favorite teddy bear. Upon our arrival outside the gates, he was greeted by Diane and her warm smile, calm & kind words.
She took him everywhere. She showed him where he would enter at a restaurant to eat first. She even asked him what table he wanted to sit at. Then she showed him the private restrooms he would use, walked him around the arena and showed him our seats, explaining how loud it would be the next day. We reminded him that’s why he was bringing headphones and could ask for a break anytime.
She then showed him another space in one of the on-site offices. It was where some of the police working details congregated at the end of the night. It wasn’t fancy, but it was away from the noise if needed. It was a novel, creative accommodation for a venue that had been open for 35 years. Andrew left excited, and we listened to the music we would be seeing live on the way back home
On concert day, we were led by Diane to the table Andrew had selected in the restaurant. She had placed a sign on it that read “Andrew’s friends” and decorated it with a teddy bear. The venue staff — from hospitality to security — had all been prepped for Andrew’s visit. Being a worried mama, I didn’t want him to get lost and not be able to ask for help. As we were eating, Diane approached Andrew, who was sitting with his bear, and introduced him to her teddy bear “Ozzy,” a rock-and-roll bear wearing a leather jacket and holding a guitar. She gave it to him, saying Ozzy would be happier with him and his bears than at her house.
You could see the joy on Andrew’s face seeing the singers whose songs he knew and dancing in his own way. Taking it all in was hard for him, but there was a smile on his face. Yes, there were walks and breaks needed. Thanks to Diane, however, and the fact she took time out of her life to make him feel prepared, Andrew had the night of his life.
This is what inclusion is. It’s about including a child with special needs with kindness and joy and not out of a sense of obligation. “Ozzy” and Andrew’s bear have become good friends and have now gone to two more shows together. Andrew has become the “mayor” of the venue and the staff treats him with dignity, respect and kindness. You can see how relaxed he is when someone says, “Hi, Andrew.” These are the people he feels safe with.
Music brings many of us joy. It brings Andrew to a new place where he’s able to do what other kids get to do. Thanks to Diane, who set him up for success, he not only can access live music, but have fun. Seeing him happy and truly included makes my heart smile.