By Mary Ellen Bogucki
I have found that the most important thing I could ever do for my daughter, Bree, was find her the right therapy. Before Bree was born I had never heard of sensory processing disorder. I knew of Autism, but my knowledge was very limited and sadly most of it came from what I saw in the movie “Rainman”. For the first five years of Bree’s life we were repeatedly told “She can’t have Autism, she is too social and at times she has eye contact.” Most of the doctors during that time period, including our first pediatrician, were only familiar with classic Autism. It wasn’t until she stimmed in front of him, twirling her fingers in front of her eyes, did he finally agree we needed an Autism evaluation, by then she was 5 years old.
Before we were recommended for an Autism evaluation, we searched for answers. Bree’s milestones and speech were delayed, plus she would have horrible meltdowns and we had no idea the cause of them. When she was 3 we brought her to our school district for a speech evaluation. Unfortunately, Bree would not separate from me or participate. It was suggested we have a play based evaluation. Unfortunately, that didn’t go very well either, but the occupational and speech therapists were able to witness enough to make some recommendations.
I will never forget that first meeting we had with the school team to discuss their findings and go over suggestions. Having a room full of strangers telling you all the areas that your child is not performing like their peers, is very overwhelming. I remember even telling the occupational therapist I didn’t agree with her findings. I had never heard of sensory processing disorder and when she told me my daughter was sensitive to touch, I was confused since most days Bree preferred being held more than anything else. She loved hugs and I couldn’t understand the difference between deep pressure and touch. My husband told me he never saw a room empty so fast, as when they told us she needed to start in their early childhood special education program immediately, and I began to sob. I couldn’t imagine this child who was scared of everything, going to school by herself.
Quickly, I accepted that this was what was best for Bree. It was what would help her to develop like the rest of her peers. I decided I needed to learn more about these challenges my daughter had and I made an appointment with the school occupational therapist. Once she saw that I was open to learning how to help Bree, she handed me a book called “The Out of Sync Child” by Carol Kranowitz. I read a few pages and immediately went out and bought my own copy of the book, so I could beginning highlighting all the pages that pertained to Bree. It was like the book was written about Bree. I went back and returned the therapist’s copy of the book and told her how sorry I was for not agreeing with her from the beginning. This therapist went on to be someone who changed Bree’s life. She is someone we hold dear to us, because she gave my daughter a future. She taught me how to do the brushing technique, she taught me all about weighted gear and after just a few weeks of OT, we were seeing improvements in Bree’s behavior. Bree was tolerating more stimuli and her meltdowns were making sense and becoming less frequent. We understood why the flash of a camera practically knocked her off her feet and why she cried at the sight of one. We understood why she would begin crying in the car, shopping cart, swing or stroller. We learned how movement was a huge challenge for Bree due to her vestibular sense, which I never even knew existed.
I have found that one of the best things we can do is listen and learn about all the therapies that are out there. It doesn’t mean we have to do them all and it doesn’t even mean that they will work for your child, but I believe we have to be open to at least learning about what’s available. I found that my child is overly sensitive in her senses and she tends to be overly sensitive emotionally. She doesn’t always understand what people mean and often struggles with social skills. She spent most of her childhood being misunderstood and feeling like she didn’t fit in with her classmates. Her peers often struggled with her reactions, questions and behavior toward things.
That Autism evaluation continued what was started at school. Going to a university hospital was a huge step for us. Bree was evaluated over the course of many visits by a team of Autism specialists and when we were done, we received not only a diagnosis, but recommendations. Recommendations that helped Bree continue to improve. She was mainstreamed with a one to one aide. This put her with her peers, where she learned to adapt and learned from them. She still received speech and occupational therapy, but now added a psychologist and social skills training. Bree struggled with making and keeping friends and all of these skills were necessary if she was to one day become independent. Bree was getting better. It didn’t change her diagnosis, it didn’t magically remove her challenges, but it did help her move forward. It helped her to experience life and not stay trapped in her house, not willing to try new things.
Finding the right therapy is still something we are faced with, even into adulthood. You see, there are times that improvements are hard, being high functioning brings about another set of challenges. Bree was making amazing progress and doing so many things we never thought possible. Unfortunately, she still has challenges and often her peers struggle to understand why she does the things she does. Her meltdowns appear to have pretty much disappeared, but actually, they have just transformed themselves into anxiety, OCD and situational depression. At times, I even find myself wondering if I did the right thing. Was it the right decision to do everything in my power to help Bree reach the same milestones as her peers and try to give her the ability to fit into society based on their rules. Was I truly helping her? Some days it is heartbreaking to watch her struggle, become exhausted with trying to keep up and still not always being fully accepted as an equal. That is the one element that she hasn’t yet conquered. Bree often feels that she doesn’t fit in, she doesn’t belong and she’s not like her peers. That feeling can be crushing, that feeling can be controlling and that feeling can be hard to live with. To help her keep moving forward, we have found another form of therapy. This therapy is cognitive behavioral therapy and it can make a big difference with people who suffer from anxiety and OCD. Just like occupational and speech therapy did, CBT is changing Bree’s life. We are so grateful we found out about it from her second pediatrician.
Now, I have begun to realize I am no longer looking at my child who once had horrible meltdowns every time she left the house. That little girl who only found comfort rocking and listening to music. A girl whose speech made little sense and for a long time was only repetitive. I now began to see her as a rosebud that has begun to bloom. I noticed the more I challenged and provided new opportunities for her, slowly her pedals began to open and she started showing the world all her beauty inside. That was what I was seeing and I no longer wanted that one rose to bloom, I wanted a whole bouquet of blooming roses, alive and displaying it’s beauty and how much it was capable of.
When you begin to see progress, you don’t want it to stop. So, don’t give up looking for the right therapy. I do hope society will begin to understand what it takes for Bree and others like her, to be out there just like everyone else. I hope they can see that although it isn’t easy, how hard these individuals work and how much they want to be accepted and treated with respect. Not everyone will get the same results that we did, but everyday new therapies are developed and we may even learn of some we never knew of. I am grateful for all the therapists who worked tirelessly with Bree to see her improve. I hope as our children continue to grow and evolve, society will joins us in accepting different.
Picture of Bree Bogucki, age 3 with her first Occupational Therapist, Sakina Kapadia.
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.