Forgetting Milestones and Learning to Measure Progress…a New Way of Thinking! #Community

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Long before my daughter, Bree was diagnosed with Autism, we struggled finding opportunities for her to fit in. She didn’t behave like the other children in those mom and tot classes. I was well aware of this, but I didn’t appreciate it being pointed out to me by strangers. Inside, I was battling to accept the fact that something wasn’t right. I was also fighting with our pediatrician at the time, who wanted to wait for her to catch up. I had two older children and Bree was definitely delayed. I feared that if we continued waiting, she may never catch up. Then, the older she grew, the worse her meltdowns became. Eventually, I stopped taking her to those classes because she didn’t really enjoy them and was usually so upset by the time they were over. Plus, I was done with all the questions about why she wouldn’t participate, why she rocked her head or why she was always so frightened and upset. I realized that I no longer could defend my answers, because I really didn’t know why. It was just better for us both to no longer try to participate.

By the time she turned four, we were finally getting answers, but they were coming from our local school district and not her doctor. I took her for a speech evaluation at the school and before I knew it, she was enrolled in early childhood education. She began receiving speech and occupational therapy and we were now surrounded by people who understood some of what was going on. At first, I was angry because now I needed to accept there really was a problem. As time went on, I learned and I truly loved being a part of this community. Our community included professionals who understood my daughter and who had seen numerous parents walk through their doors scared and grasping for answers. It was nice to be around people who got it. They were teaching us all about Bree’s challenges and they were helping her learn to cope. We also met other parents who were just like us and our community began to grow.

As Bree got older and received her Autism diagnosis, we didn’t know where to turn for activities she could participate in. We started at NISRA, Northern Illinois Special Recreation Association. NISRA was our local SRA and we found classes and activities she could join. By her joining and participating in NISRA, we began to meet other children and their parents. My daughter was starting to finally make friends and we no longer needed to explain our daughter to anyone. NISRA lead us to Special Olympics Illinois and her opportunities blossomed. We were now busy running to gymnastics, basketball, volleyball, softball and powerlifting. Many of the same kids played on multiple teams with Bree and we all became like a family. We cheered for each other’s children and we shared stories and advice. We supported each other and we all had a place to belong. We no longer feared being judged or shunned. We had what everyone else had…We had sports teams, music classes, plays to perform in and so much more. We found a home, but it was no longer lonely, it was full of life, friends and people just like us.

After being a Special Olympics athlete for many years, Bree became a Special Olympics Global Messenger. By being a Special Olympics Global Messenger, Bree gets to share her experiences and encourage others to participate. She has met so many wonderful staff, and law enforcement officers through the Law Enforcement Torch Run Program. These officers are now her friends and our community continues to grow. She now has the courage to go out and speak to middle schools on the acceptance for all and not judging others.

Another mother and I, were looking for more young adult social activities and ended up starting our own social club called “Friends finding Friends”. We started it small with about 10 people and now our group has over 100 members. We plan different social outings for the group, to get them out and communicating with each other. Our hope is that they will begin to take the club over and run it themselves. Although, when our young adults meet, so do their parents and we absolutely have an amazing time sharing and enjoying each others company, while spending time with our children.

If I could share one piece of advice, I would say find a community to become a part of. We get so busy every day and sadly sometimes forget what life use to be like. See if you have a local special recreation association. Special Olympics is available to all different learning levels and has so much to offer for everyone. Communicate with your school team and stay involved as a team member. Lastly, don’t give up finding a community. I know many people who have moved to find the right school or even the best SRA. If you can’t find it, create it. When you find people with your similar beliefs, interests and experiences, you become a community.

 

-Mary Ellen Bogucki

Mary Ellen Bogucki is the mother of Breanna (Bree.) Bree is a nineteen-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.