Forgetting Milestones and Learning to Measure Progress…a New Way of Thinking! #FakingTypical (Part One)

mary-ellen-blog-1-for-nov-pic

By Mary Ellen Bogucki

About 10 months ago, I decided to share some of my daughter, Bree’s story, through Exceptional Blog. My wish is to give hope to others and share what worked and didn’t work for us along our journey.  Also, my desire is to educate those who may not understand certain challenges our loved ones face.  Bree, has had some amazing opportunities and has been extremely blessed to experience much success in her life.  What most people don’t realize is every day is a challenge for her.  Those that don’t live with her or know her on a personal level, see this girl who appears completely “typical” as I refuse to use the word “normal”. To see her, you wouldn’t know she has Autism, OCD, anxiety and depression. What I have come to learn is that there are challenges that come with both visible and invisible disabilities. Challenges that have little to do with the actual disability and more to do with people’s perception of the person.  I have also learned that trying to fit into a world where you are different, is no easy task and is often a very lonely place.

On the surface Bree appears quite “typical” and successful.  After all, in 2012 at the age of 15, Bree won a talent competition (singing) for individuals with special needs, called “Special Talents America”.  The prize included a song written for her by Jim Peterik, Grammy award winning (Eye of the Tiger/band Survivor) musician/songwriter and singer/songwriter Lisa McClowry.  Bree professionally recorded the song “I Was Born Yesterday” and it is available on iTunes. A few years later, Bree, a Special Olympics athlete and Global Messenger was invited by Special Olympics and Coca Cola to join a unified project called “Reach Up”. This project brought together professional artists (Marc Roberge and the band OAR, along with Cody Simpson) to work with artists with disabilities (Madison Tevlin and Bree). The group even appeared on television, including “Good Morning America” and ESPN, when they performed at the Special Olympics 2015 World Games in Los Angeles, in front of 65,000 people.

In addition to that, Bree advocates by giving many speeches to junior high and elementary school children about “Acceptance for All”.  She was even invited to speak to the employees of The Coca Cola Company in Atlanta, Georgia and was the keynote speaker for a human services conference held at Harper College in Illinois. Bree has given presentations on Autism to Western Illinois University students who were studying to become special education teachers. She volunteers for many charitable events/organizations, by singing, speaking and fundraising.  Besides all these wonderful experiences, Bree attends junior college.  She runs on their cross country and track teams, where she has earned “All American” and came in second place at the 2016 NJCAA Track Nationals, held in Maryland, for the 5K and 10K races. She also broke the school record with her 10K time.  Recently, Bree’s GPA earned her a spot in the Phi Theta Kappa, honors society, which she was inducted in last week. So, believe me, I understand why at times people don’t believe Bree has challenges.

What most people don’t realize about Bree is that there was a time she wouldn’t leave the safety of her home or even her bedroom, because the sensory stimuli outside our house was too overwhelming for her to handle and caused severe meltdowns.  Most people don’t know that Bree was developmentally delayed, not crawling until after her first birthday or walking until after her 2nd birthday.  She was speech delayed and when she did begin to speak, she only had repetitive language and spoke jargon. She had no expressive language and couldn’t hold a back and forth conversation for much of her early school years.  Unless you know Bree, you wouldn’t know she had a one-on-one aide from Kindergarten through 8th grade.  You wouldn’t know that when she was diagnosed, insurance did not cover Autism. You wouldn’t know that I cried to the insurance spokesperson when she told me Bree’s speech therapy would not be covered, because it was not medically necessary. I cried when the same woman told me she was just the messenger and that she was sorry, she realized speech therapy could change Bree’s life for the better.  You wouldn’t know that for the first few months she attended early childhood education classes, Bree whimpered and cried all the way to school and I cried all the way home.  You wouldn’t know that once at school, she wouldn’t physically move, unless she was led by the hand.  You wouldn’t know that she didn’t play with other children or that most days she arrived home and had a huge meltdown as a reaction to her day.  You may not know that I started a daily log with school, so I could know what went on during the day, since Bree was unable to communicate with me.  You wouldn’t know that her first 4 years of life she barely slept, waking up screaming and inconsolable all throughout the night, reacting to the loss of her pacifier (her calming tool). Or, reacting to something touching her skin while she slept, like a pajama top moving as she rolled over.  You may not know that beginning before her 1st birthday, flash cameras hurt her eyes so badly that she developed a fear of cameras. Most of her early photos are of her crying or covering her eyes. There are so many things about Bree that most people have no clue about and probably have a hard time accepting now, that she has become good at faking “typical”.

Today, she speaks and has fluent conversations with others, she can even make eye contact with those she knows and likes well. All thanks to the speech and occupational therapy she received in her ECE classes and all the out-patient therapy we paid out of pocket for. In addition to those therapies, she also received social skill training through her school and we obtained outside social skill and behavioral therapy and still do. Bree would not be where she is today without the years of therapy and multiple teams of special education professionals, general education teachers and administrators who worked tirelessly to help her progress.  You may be surprised to learn that I have been told more times than not, that “Bree doesn’t look like she has Autism!” Even though she has been diagnosed with what was once called PDD-Nos or Pervasive Developmental Disorder–not otherwise specified and is now called high functioning Autism.  I often say she falls between two worlds, and sadly struggles to fit in somewhere.

Unfortunately, we are surrounded by a few different types of people. First, there are those people who don’t want to believe she has any challenges and refuse to accept she may need certain accommodations.  These people don’t take the time to get to know her personally.  Or, there are those people who make judgements without ever working with her and don’t believe she can be successful and refuse to even give her a chance.  Both of those types of people are missing out on Bree’s unique, hard-working and talented spirit. They are not only missing out on her, but millions of others just like her.

Yes, if you take the time to get to know Bree, you may begin to see her head sway from side to side.  This rocking motion she acquired when she was only a few months old.  If you speak with her for any length of time, you may notice she repeats herself as a way of OCD checking. Her Autism and OCD showing glimpses of themselves.  She has worked hard over the years, to fake being “typical”, but faking can be exhausting and she is often exhausted.

 

Please come back on Thursday, November 9th for Part Two…

 

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.