If you missed Part One, please visit the post from earlier this week on November 6th!
By Mary Ellen Bogucki
For years, I asked to have certain accommodations in her IEP. One of the most important was a seat close to the teacher, where she could remain focused and get help when needed. That accommodation appeared on her very first IEP all the way to her last IEP (senior year of high school). What I learned, was Bree refused to sit in front of the classroom most of the time. She chose to sit all the way in the last row. She chose this, not because she didn’t want to pay attention or wanted to goof off. She chose the last row because there would be no one sitting behind her, who could notice that when she concentrates, she rocks her head from side to side. She has been rocking for so long, that she no longer is aware of it, that is until someone brings it to her attention. Unfortunately, it is brought to her attention and most times by complete strangers. Recently, Bree was in the computer lab at school working on homework. There were many available seats, but two middle aged woman decided to sit directly next to Bree. While sitting there, they begin to talk to each other about Bree and her head rocking, making comments about her being in a trance. When my daughter realized it was her they were discussing, she met their stare (eye contact with strangers is difficult for her) she then announced that she has Autism and she rocks unconsciously when concentrating. I was proud of her for advocating for herself, but I was saddened that this even occurred. Every time Bree tells me a story of people teasing or questioning her behaviors, it breaks my heart. If it wasn’t her head rocking that drew attention, it was the way she walked or some of her OCD ritualistic behaviors.
Every day, we work on social skills and ways to help Bree fake “typical” and often I feel like a hypocrite because I work just as hard to encourage her to be proud of the person she is and to advocate acceptance for all. So, why am I writing this blog today? I am writing because our loved ones fight challenges every day, challenges most of us will never experience. Although Bree “fakes typical” on the surface, what people don’t recognize is that she has a processing delay, where she needs to think about what is asked before it makes sense to her. They don’t realize that when multiple instructions are given, she may become overwhelmed and shut down. Just like when she is in a crowded room with lots of sensory stimuli bombarding her. Most people don’t see her OCD struggles and how much anxiety she has daily. They don’t know that rituals take up a good portion of her life or that she fights panic attacks and recently even had one in her sleep. She woke up with her heart racing, feeling sick to her stomach and had a overwhelming sense of panic. This particular morning, she needed to be at school before 7am to board the bus to take her to a cross country meet 3 hours away. She needed to work through this, or risk missing the meet which was very important to her and her team. We weren’t sure she could fake “typical” that day. But, once again she fought through and even took a minute off her time from the year before!
I often feel like Bree’s life is a house of cards. Sometimes the cards stand without even the slightest wiggle, while other times it appears the whole thing is on the verge of crashing. Sadly, many times when her challenges sneak into view, people begin to pull away as she becomes too much work for them. There is a common cycle that happens all too often, when people meet Bree they become caught up in her giving spirit, but when her anxiety and OCD become tiresome, they move on. This cycle happens more times than I can remember and the hurt and confusion it causes, sends her into a depression. She blames herself for being stupid and allowing her challenges to appear. She blames herself for failing to continue to fit in and appear “typical”. She blames herself for losing one more person in her life. I often thought it was in her best interest to make her fit into “typical”, after all it is where she will have to live and work if she is ever to become independent. I still feel for her it is in her best interest. So, I try to educate those “typical” to be more accepting, because faking takes a toll and is exhausting.
So, what is my message here? For us, pushing Bree through mainstreaming her to be with her peers, helped Bree improve. Continuing to expose her to the “typical” world, even when the days didn’t go well, continued her progress. I think the most important thing is to see if your child improves. I kept her in a safety bubble for a long time, only to be told I wasn’t helping, but hurting her. Not every individual will respond and improve and I think it is important to learn when to push and when to pull back. When to expose and when to protect. I haven’t figured it all out yet, but I do know that Bree’s future is to live in the “typical” world, so I need her to demand respect for herself, just like everyone else should. Just because she doesn’t fit the mold, doesn’t mean she doesn’t deserve to be respected, included and accepted for the person she is. This goes for every person, not just those with challenges. Success comes in many different ways and just because your success looks different from my success doesn’t mean it is not real.
Maybe if we lived in a more accepting world, our loved ones wouldn’t have to fake “typical” and we wouldn’t have to advocate so much. I guess if I could advocate for one thing, it would be to tell people that it is not a compliment to say, “She doesn’t look like she has Autism!” Right there, you are telling me you know nothing about Autism. Autism may give her challenges, just like OCD, anxiety and depression, but challenges are things she faces, not who or what she is, and she certainly doesn’t look like anyone or anything, but herself. When a person sees the ability, they don’t focus so much on the disability and then there isn’t this need to fit in or fake “typical”. Acceptance for All: https://www.youtube.com/watch?v=YUl1k8ZTW0g
Mary Ellen Bogucki is the mother of Breanna (Bree.) Bree is a twenty-year-old college student, runner, singer, special needs advocate, Special Olympics athlete and Global Messenger. Bree has been diagnosed with high-functioning Autism, OCD, anxiety, situational depression and sensory processing disorder. Follow along as her mother describes where Bree began and how she arrived where she is today. Mary Ellen will explain what helped Bree improve, along with some mistakes they made on their journey. By telling their story, they hope others will find hope and comfort. Bree currently is attending Harper College in Palatine, Illinois pursuing an Associates Degree in Human Services. She is a member of their Cross Country and Track teams and the President of the Access and Disabilities Success Club. Harper College offers a Transition Autism Program (TAP) to help those with Autism transition from high school to college.