Bonnie Zampino assumed her position as ABA Practice Manager for Grafton in November 2012. She has over 20 years of experience in the Human Resource Management field. Bonnie is also the founder and President of A Special Space, Inc., a nonprofit organization that offers therapeutic childcare for children with autism spectrum disorders and other special needs. She has developed a revolutionary experiential learning module called; “Experience Autism” that is receiving rave reviews. Bonnie is also a parent of a child with autism.
The alarm goes off by my bed at 5:45 a.m. I don’t have to get up quite that early to get ready for work. But I get up this early so I can have an hour of quiet to drink coffee, catch up on Facebook, and take a hot shower.
The silence is shattered as he walks into my bedroom.
“Mom, its only 98 days until Disney Infinity comes out!”
I haven’t had enough coffee to keep up with this. I think back to when Brendan was diagnosed with autism and how I thought that children with autism were all non-verbal. I remember wondering how I ended up with the only child with autism who never stopped talking. That was before I learned that autism is a communication disorder and even those individuals who can talk don’t truly communicate.
“This is the best video game! There are 3 main characters. They are Mr. Incredible, Sully and Jack Sparrow. There are other characters too. There’s also the girl who can do the force field, Mr. Incredible’s wife, and then, what’s his name? The guy with one eye from Monster’s Inc? But the rest are bonus characters. Like Wreck it Ralph. You put little spheres on the bottom of the figures and then you put them on, and you can play as that bonus character. There’s a whole bunch of those. Buzz, Woody, Lightning McQueen, that villain from the Incredibles…well, he’s a character too. The last time I checked it was 104 days until Disney Infinity comes out. So it’s been 6 days since I checked. This is going to be the best game ever. I can’t believe Wreck it Ralph is going to be in it. So is Vanelope. And a whole bunch of other characters. It has bonus characters from Monster’s Inc and Toy Story! The starter pack is just the video game and the 3 main characters. That’s all the starter pack is. When you get higher you can collect more characters. It’s a game for a bunch of things, including the Wii. But we can’t get it yet. We have to wait for 98 more days and then we can probably go to GameStop and get it. Maybe we should get it for the Play Station instead of the Wii.”
Brendan cocks his head to the side and the words fade away as he retreats inside his own mind. I watch as he wanders back out into the hallway.
“Good Morning, Sweetie. How was your sleep?” I call to him, desperate to connect.
“Good” he says.
“Did you have any dreams?” I ask.
“No.” he says.
“Guess what?” I ask.
“What?” He replies.
“I love you.” I say.
“I knew you were going to say that.” he says.
And then he is gone, headed downstairs for some computer time before school.
Brendan was diagnosed before the age of 3. He was verbal only to recite books or movies. He did not make eye contact. He spun and watched fans and banged his head. He did not play with other children. He was fixated on trains and loved to line objects up. Early intervention services made a huge difference in his life. Brendan is mainstreamed now in 4th grade and has begun working with me to educate others about autism.
Brendan is my hero and my teacher. The more I learn, the more I am humbled by Brendan’s courage. He gets up every day and puts a smile on his face and walks into school which is a very uncomfortable and oftentimes painful place for him. His sweet spirit and kind heart overwhelm me. His tenacity astounds me.
Through him, I have had the unique opportunity to catch glimpses inside the mind of people with autism. I have learned much. I know through the years I will continue to learn more.
Brendan is honest to a fault and justice is incredibly important to him. His lack of social understanding, however, makes him believe that he is absolutely his brother’s keeper. He won’t hesitate to explain to someone the error of their ways. When they won’t listen, he will tell an adult. Teachers tend to view this as tattling. It’s not. It’s his innate sense of justice and lack of understanding of how he is viewed. He needs to be listened to and then taught a more appropriate way of handling the situation.
He is prone to sensory overload. He has explained that the same setting won’t always produce the same results and he never knows when smells or lights or noise or crowds will become too much for him. But when they do, he explains that he wants to get up and run away from the situation. He knows that this is against the rules, so he will bang his head into the wall or hit himself or pull his hair out. We look at this as self-injuring. He looks at this as a way to calm himself. He needs someone to pay attention to the signs that he is in distress and to give him a break from this stimuli before he begins to hurt himself.
When a situation is emotionally charged, his ability to communicate shuts down. Without words, he is left with actions and those are typically aggressive ones. He knows that hurting another person is wrong and so he feels intense shame after he is aggressive and often wants to punish himself. He also is unable to talk about what happened until he has calmed down for a period of hours. Teachers often view this as an unwillingness to talk. It’s not. It’s an inability to make sense of emotions and events at the moment. He needs comfort and time to gather his thoughts and needs to be loved and told that he is forgiven so that he doesn’t punish himself.
Brendan cares about others. A lot. He is not always capable of expressing it. It’s OK to remind him to ask others about how they are doing and what they like. He doesn’t take it personally. He just forgets. Brendan has friends and loves to spend time with them. He gravitates towards those who share his interests and are OK with him talking on and on about the things that fascinate him. His dream would be to have someone sitting next to him, watching him play video games.
Brendan memorizes what he hears. TV shows, commercials and video games play on and on in his head. In order to stop the tape, he is compelled to repeat the dialogue, verbatim, complete with accents. While it’s difficult to listen to this, he needs someone to hear him. Once he is able to repeat it out loud, he can move on.
This need to repeat information is what is happening this morning. I go downstairs to refill my coffee cup and reach out to run my hand over Brendan’s hair while he stares at the computer screen.
“Mom, did you know that Sasquatches, well, I can’t remember, but either their legs are long and their arms are short or their arms are long and their legs are short…it’s either one of those. They make howls and screams and stuff like that. They go in wooded areas mostly. Did you know that you can barely spot them when they are out but sometimes you can and they are located in Georgia, Australia, Ohio, and West Virginia? And Virginia, I think. A whole bunch of places. They can be three colors. Ummm, brown, black and white and they can escape pretty quickly from humans. Speaking of Sasquatches, Joseph believes in them now! I told him the story of the first time I saw one and he started believing me! He actually said that he would help me find one. Yeah. The highest they could be is at least 15 feet. Well, Sasquatches. I don’t know how big a Big Foot is. I’m not sure if that is for both. I don’t know. But I have seen footprints before. I heard a howl once and I have seen eye shine before. Don’t you remember when you found that huge footprint? The heel was sooo big. That was a Sasquatch for sure…”
I sip my coffee and tune out the words while I gaze at my beautiful boy. I interrupt.
“I love you, Brendan.” I say.
Still staring at the computer screen, he says “I love you too, Mom.”
All the other words fade away and I hold those five very special ones in my heart as I begin my day.