By Mary Ellen Bogucki
When I became a parent, I learned I had strength I never knew existed and I found a voice that I hadn’t really heard before. I think that is common for most parents. When you are responsible for a life, whether you brought this life into the world or you chose to adopt them into your family, you have a commitment and a duty to love, protect and care for this individual. To give them the best life you possibly can and to teach them to grow up to be the best person that they can be. At least that is what I believe.
When I gave birth to my son, 27 years ago, I felt pretty good about how I was handling motherhood. It was my most favorite thing in the world and my husband and I couldn’t wait to grow our family. Well, that wasn’t exactly in the plans, it wasn’t going to be as easy this time to conceive. It would be five years before our next child would be born. Those years showed us the true blessings that our children are and helped us to not take life for granted anymore. Two more children and 3 pregnancies later, I learned not everything goes the way we plan. Not every baby lives to see life and not every child is born without challenges.
In addition to my son, we now have two daughters. Our oldest daughter has ADHD and our youngest Autism. What we have learned, is raising those two combinations together can make life interesting, to say the least. For example, when you decide to take your three kids on the train to travel to Chicago from the suburbs, it can be an enjoyable outing or possibly something that sitcoms are written about. Yes, I often feel “My life is a sitcom” because the experiences we have can either make you cry or laugh so hard you cry. On this particular day, we were without diagnoses and didn’t realize it would be a bad idea to take a 2-year- old with extreme sensory issues, who hated movement, on a fast speeding train. She was obsessed with Thomas the Tank Engine; how can she not love a train ride?? Then you confine a 4-year-old with ADHD to a seat and expect her to sit still, it’s a bad, bad, bad idea. The 4-year-old decided she would entertain herself by constantly leaning forward into the increasingly agitated 2-year-old’s face. Constantly talking and moving closer and closer. I repeated the phrase, more times than I can remember, “Stay away from your sister’s face! Please get back on your seat, etc.” Trying to keep my cool and not lose my patience, I began to feel like a failure as a mother. I was raising my girls as I raised their brother, but nothing I did worked anymore. How could I have it so wrong this time? Well, it happened…the 2-year-old on the verge of a sensory meltdown (not that I knew what a sensory meltdown was back then) took her cup and whacked her sister on top of the head. Now, my 4-year-old was crying, but she was no longer in her sister’s face, we had that going for us! Of course, I wasn’t happy about it, but I understood why it happened. Unfortunately, a lady across the aisle thought she too understood and decided my 2-year-old needed to be reprimanded, by her! And, I used a voice that I never heard before.
I don’t like confrontation and actually avoid it as much as possible. This upset me, how dare she think she knows what’s going on here! This was my life and I didn’t really know what was going on, so what makes her think she knows it all. After all, for years, I was asking the right questions, but was repeatedly being told “No, she doesn’t have ADHD, or no it’s not Autism!” Only to find out years later that it actually was the whole time. So, I made a loud comment about people minding their own business, especially when they have no idea what the situation is. I almost couldn’t believe those words came out of my mouth, but I was so upset and let it rip. Sadly, I learned that this would only be the beginning of difficult situations and comments from strangers.
Unfortunately, there are so many times that rude comments have been directed at us. We waited years to take our girls to Disney World, I’m sure you understand why. When my girls were in their early teens we finally thought they could handle it. We went with the help of the Autism doctor’s note and were verbally harassed by some standing in longer lines than ours. Apparently, our daughter does not look like she has a disability that would warrant any extra assistance. But then again, they never rode on a speeding train with her. It didn’t help that when she panicked she would run (fight or flight) and we would constantly have to run after her. Or, that my girls were involved in a kicking match because the running off kept disrupting everything else we wanted to do. Luckily, as parents you learn early on that life does not go as planned and if you don’t wing it, you don’t move forward. If you don’t wing it, you are stuck at home and no one grows and learns how to cope in the real world. Yes, you find yourself having more “My life is a sitcom” moments, but you learn to laugh and not cry as much.
So, what do you do? I can’t speak for everyone, but I learned to find my voice, I learned to speak up and I try to educate people. It’s not always successful, but I advocate for my children and others like them. I hope people will listen and learn. I admit, I didn’t always handle it the right way, but hopefully I have improved. There is always going to be those times when you are going to have to talk to people who think they know better or more than you do. Sometimes they do, but often times they don’t. You are raising your children, you know them better than anyone. Speak up in a confident and knowledgeable manner. I try very hard to remain polite and not attack back, although it is hard at times. I wish I could tell you it stops, I have learned I need to teach all my children to become their own advocate. Especially my youngest, who after years of being treated disrespectfully by people who should know better, she is finding her own voice. She is advocating for herself and others.
Just a few months ago, we experienced another example. We were looking for ways to help our daughter continue her education through college and were directed to an outside agency for assistance. While there, we were told by the person who was supposed to be helping us, before he even read her file, that she could never handle the course load needed for the degree she pursued. I had to explain to him that I found that surprising, since as a college athlete she was already carrying a full course load and actually had a 3.86 grade point average. Yes, it may not be easy for her, but don’t tell us she can’t do it, when she already is. Unfortunately, we are always going to be faced with people who may jump to conclusions without ever getting to know our child. Another example, was a few weeks after that, she contacted an honors group about becoming a member. Through email, the man told her that with her GPA, she would be eligible, but he would need to meet her first, to make sure her behavior wasn’t disruptive to the rest of the group. Again, with little knowledge of my daughter and what she is capable of, conclusions, assumptions and judgements are made, based on their lack of knowledge and what they think Autism is. There is a saying, if you met one person with Autism, you’ve met one person with Autism. Autism is not the same for all, which is why it is considered a spectrum disorder.
By telling you our story, I don’t wish to discourage anyone. My only hope is to possibly help you, as others have helped us. I believe we are a community that needs to work together for the good of all our children. Our kids can do amazing things and shouldn’t be told they cannot, based on one person’s ignorant opinion. Our kids are warriors, and in my case, they made me one. Yes, at times “My life is a sitcom” but I am forever blessed by my children and motherhood is still my favorite thing in the world.
P.S. That 4-year-old with ADHD, just graduated college with a degree in Special Education. She hopes to help others overcome their challenges and find success in their lives.
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.