Forgetting Milestones and Learning to Measure Progress…a New Way of Thinking! – Fighting for Inclusion and Acceptance

By Mary Ellen Bogucki

 As July came to a close, I witnessed the launch of the “Inclusion Revolution” with the Special Olympics 50th Anniversary Celebration. I wondered that with the celebration behind us, would the momentum continue and would society step up to the challenge?

The challenge is defined in the “Inclusion Revolution” pledge. The pledge states:

I pledge to look for the lonely, the isolated, the left out, the challenged and the bullied.

I pledge to overcome the fear of difference and replace it with the power of inclusion. I #ChooseToInclude.

What I love so much about this pledge, is that it covers everyone, not just those with disabilities. It covers anyone that feels lonely, isolated, left out, challenged and bullied. That’s a lot of people and a lot of acceptance needed.

Days after the Special Olympics 50th Anniversary festivities, we drove my daughter, Bree, to her new college, Tennessee Wesleyan University. I was filled with so many emotions and I ran through every one of them. They included happiness for the new opportunities that awaited her. Then, fear for the unknown of what she would face and how she would handle it. Lastly, sadness overcame me, for I was missing the daughter I spent so much time raising, the daughter who relied on me not only for her care, but often her decisions. We were standing at the culmination of what we worked years for and I wondered if WE were ready?

What I know is her journey has been filled with many roads and each one, including this one, needed to be explored. The first road we traveled began well before we received Bree’s Autism diagnosis. It was a road that led away from the judging eyes and uninformed comments. It was a road that brought us to a very wonderful community. This community welcomed everyone, no matter the challenge. We all came with different diagnoses, we all got there by different means, but we formed a kinship based on inclusion, acceptance and understanding. This is what we refer to as the special needs community, but truly it is just a special community. This community consists of everyday people, all working toward the common goal of providing a loved one the best life possible. “Providing a loved one the best life possible,” seems like a goal every parent has, then why do we need our own community? Answer…We don’t or at least we shouldn’t, but sadly even today, many feel excluded. Many face discrimination whether in schools or at work, that is if they can find work.

So, where do we begin, and where are we going? For most the beginning starts with a diagnosis…”Your baby has, your child has or maybe it is you have…fill in the blank! For many what follows can be ridiculous, insulting advice that sadly is often still being repeated generation after generation. Just the other day I watched a video that touched me. It was of a dad who felt he failed his son, because when he overheard some kids asking their parent about Down Syndrome, he didn’t correct the explanation the father gave his children. Here is the link if you would like to view the explanation given to the kids. Sadly, this shows how behind the times so many of us are and why we all need to #ChooseToInclude. We need to move forward as a society, to end those stereotypes, prejudices and discrimination. We need to educate and spread awareness for inclusion and acceptance for all, but what does that look like? I think in some ways it may look different for everyone, but I think there needs to be a common denominator of inclusion and acceptance.

Bree was in special education from age three through high school. That meant that she was receiving some form of special education services. Initially, she was in a self-contained special education preschool classroom. At age 6 she was mainstreamed with a one-on-one aide, this included her among her peers, but gave her the support she needed to be a successful student. The important thing when doing something like this is that the student should have meaningful interactions with their peers and that the peers should receive some education on accepting different student challenges. Unfortunately, what can occur is that the student is pegged as different and the result is they don’t feel included or accepted among their peers. When Bree reached high school she still was receiving special education support, but she was no longer receiving the help of an aide. This caused a lot of increased anxiety and many new challenges for her. The good news is that she rose to the challenge and fought to be a successful student. Sadly, the feelings of isolation and exclusion began to grow.

Something I didn’t know until we were about to enter the door, was that in college Bree would no longer have an IEP, but only have modifications. What that meant to us was if Bree needed extra support, more than a modification i.e. extra time on tests, we needed a special education program and that program was different from the college experience that those without challenges received. Luckily, we found her the best of both worlds, a perfect program called the Transition Autism Program at Harper Community College in Palatine, Illinois. This program provided her with the extra support she needed to make the transition from high school to college, but still allowed her to attend college classes and earn college credit while being included alongside her peers. Many colleges offer different programs to help students with disabilities transition out of high school. Some colleges offer amazing disability programs, but many, unfortunately have a hefty price tag attached, which makes it impossible for some to attend and this was a problem we faced when looking for a university for her to attend after Harper College.

I think when looking for a school, you must really know your child and be honest about their abilities and your expectations. Know how they learn and what they respond to. Know what they will need to succeed and if the school can provide that. Inclusion can look very different based on the needs of your child and those needs are different for everyone. For Bree, she needed college courses and to be in the same classes as her peers. She needed to be given the opportunity to earn a degree with the hope of finding a job where she can live independently one day. We looked at a lot of schools and it isn’t always easy to find the perfect school.

We visited many colleges, some with phenomenal disability services, but the campuses were bigger than we liked and after her time at Harper, she didn’t need many of the services they offered. Or, we found the right size school, but the Autism program would cost us $5000 more a semester, on an already large tuition bill. In the end, we chose a school that was small; they didn’t offer an expansive disability department, which I admit was somewhat frightening. We were able to look past that because of what they did offer, which was very small class sizes with low teacher to student ratios. At this school, the professors work directly with their students from the beginning and offer tons of opportunities for assistance if the student is struggling. We found that every where we looked, people were friendly and all had the student’s success in mind.

The biggest thing we found was inclusion. Bree was going to run cross country and track and she wouldn’t succeed if the coaches were not inclusive and understanding. She would not succeed if the team was not accepting of her and appreciate what she brought to their team. That was our biggest selling feature, coaches who understood and made her feel valued. Being valued is the key to the inclusion revolution; it’s where abilities are the focus and not differences.

We are still in the early stages of this part of Bree’s journey, but I hope her story will encourage others to look beyond differences. We hope other schools will learn from this school’s example and the power of inclusion their coaches, professors and students’ offer. After all, when Bree was getting diagnosed, the prevalence of Autism had jumped from 1 in 500 to 1 in 150. Today, the CDC has it estimated at 1 in 59 and many Autism organization’s feel it is even higher, at 1 in 45. Many of our kids have the ability to attend college and earn a degree. They just may need a little more guidance and support. Transitions are hard for almost every one, but for our kids they can be debilitating or even impossible if not handled correctly. It clearly is not a one school fits all, but hopefully we will soon have more options to choose from. If all goes well, schools will continue to welcome and include everyone and more affordable options will exist for those with disabilities. What an achievement if our loved ones could feel included and the fear of differences disappear.

Fifty years ago, the world began to change for the better, with the first Special Olympics games that were held at Soldier Field in Chicago. Today, Special Olympics has a renewed purpose to end discrimination against those with intellectual disabilities and create inclusive communities where everyone will feel accepted and included. Although the Special Olympics 50th Anniversary Celebration is behind us, may the Eternal Flame of Hope, be the beacon that   shines the way to a better future.

For information on Special Olympics Unified Champion Schools, click here!

Picture Top: Bree Bogucki at Special Olympics Flame of Hope Monument, Soldier Field, Chicago, IL. Picture Bottom: Bree Bogucki at Tennessee Wesleyan University.


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.