When you hear those words “Your child has…” we all experience similar feelings. The end of that quote may contain a different diagnosis, but for most of us the feeling deep in our stomach or caught in are throat are the same. That feeling that your heart aches because you no longer know the vision or the way your path will lead. All you feel is confused and scared.
Some of us hear those words months before our child is to be born, some the hours after their birth and still others months or even years later. Then starts the fear, constant worry and feelings of being incredibly overwhelmed. These symptoms can last for days, months and sadly for some, a lifetime. “Now what?” I cannot speak for every parent of a child with challenges or special needs, I can only speak from my own experience. Everything I knew to be “normal” …. (I’ve grown to hate that word!) had changed. I learned to redefine and came to appreciate progress. No matter how big or small or fast or slow it came.
You see, with every milestone that wasn’t met and for every person who knowingly or unknowingly crushed my heart by saying “Shouldn’t she be walking?” “Shouldn’t she be talking?” “Why won’t she separate from you?” “Why doesn’t she play with the other children?” “Why is she so unhappy?” “What does her doctor say?” “Why is she always rocking her head?” and on and on…my heart ached for my child and for what would become of her.
Initially, as I sat at a conference table listening to a dozen people recite what my daughter’s deficits were, those things that she couldn’t do and what now qualified her for special education, anger grew inside me. “Who do they think they are telling me what’s wrong with my daughter!” I really didn’t like them and wanted to go home and hug her and protect her from everything that made her scared. But, I knew that wouldn’t help her. I was sitting at that table because I needed to help her.
For us, things began to change when we started to understand what our daughter was experiencing. Those people I was angry with, who I thought I might hate, they became the angels who showed me what my daughter could do and I learned to view the “Achieve goal at 80% not as a negative thing, but a positive!” I learned to understand her strengths and appreciate when the first time on a progress sheet “she responded when spoken to.” It may have only been one word, possibly a “Yes”, but probably a “No”….but, it was a word! It was small, but it was PROGRESS!
In the beginning, I would walk her in and leave her inside the door. She would be whimpering, with tears in my eyes, I was told to leave. I would walk away and before exiting the building, I would turn to see her still standing in the place I left her. My heart would ache, “Keep walking, you must leave her!” I would tell myself to get me to go. This went on for probably the first month, but one day I turned to see her take the hand of the aide and move from that spot….PROGRESS!
–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.
