By Mary Ellen Bogucki
For a long time we didn’t travel or take vacations. From a very young age, my daughter, Bree hated car rides. The minute the car started moving, she would cry. It took us years before we learned she had Autism and sensory issues. Her vestibular sense was affected and movement was a problem for her. The biggest mistake we made was when we decided to stop at a waterpark on our way to visit friends one Thanksgiving break. Bree was 3 years old and was still not sleeping through the night. It was like having a newborn for three years! I convinced myself it was because she would lose her pacifier during the night and that was why she would wake up screaming and was inconsolable. If we just broke her of the pacifier our problems would be solved. Besides, she was going for a preschool screening in a few weeks and I didn’t want the school to blame her delayed speech on the pacifier use.
It had been a week of hell after taking the pacifier away. I told myself it would be a mistake to give it back to her now. Soon she would get passed it and eventually get used to life without the binky. Unfortunately, even after two weeks, we were no closer to breaking the habit. She seemed unable to calm herself or go to sleep without it, but I wasn’t going to give in. “This too shall pass” became my phrase of choice. Things escalated when we arrived at Wisconsin Dells, the waterpark capital of the world! Unknowingly, we exposed our over sensitive child to as much stimuli a waterpark could throw at her. We took away her only way to comfort herself and somehow we thought everything would be okay. Afterall, our pediatrician kept telling us it was because she was the youngest child, she had two older siblings who waited on her, she didn’t need to crawl or talk. Then he said she couldn’t have Autism, because she was capable of eye contact. He would say not to worry about all of her delays, they would eventually go away. She would catch up!
We spent that night at the waterpark sitting with her in the hotel bathroom trying to comfort her and keep her quiet to not wake up her brother, sister or everyone else in the hotel. Then we went to visit our friends and the crying continued for a few more days. She hardly slept in weeks and was miserable! She cried for the 5 hour car ride home and then she got sick. At this point, her and I were both exhausted, so we laid in my bed watching a movie, in hopes slumber would finally win. In the movie we were watching, the little baby started sucking its thumb and I watched Bree look at her thumb and put it in her mouth. That night was the first night she slept through the night since she was born. I waved the white flag and accepted that she would one day wear braces….and she did!
Still, the damage was done and we found ourselves taking less and less vacations. Once we received the Autism diagnosis, we would only visit our friends from time to time. We didn’t venture out and only stayed with familiar settings. We waited until Bree was 13 before we even considered a trip to Disney World and that vacation came with multiple incidents of elopement. Each time Bree ran away from us, it was in response to being overstimulated. Bree is now 21 and traveling has always been a challenge for her. It causes a lot of anxiety and so we just avoided doing it, but as time went on we realized it is a necessity. So, I began looking at different ways to help with traveling with a loved one with Autism or a disability. To my surprise, I found there are a lot of articles and programs to help our kids transition to traveling. Now that Bree goes to school in a state 10 hours away, she will need to learn to travel/fly independently. Recently, I watched an interview about a young man with Autism who is a motivational speaker. He travels quite a bit, giving speeches. This video is about a time when his travel plans changed and he became overwhelmed ttps://www.youtube.com/watch?v=ZGqFZq9jG-w. I found it of interest, because of where Bree is in her life, she also gives speeches and with school, she will need to learn to travel independently. I was happy to see there are still compassionate people out there. At times I lose hope, when someone yells at Bree for moving to the front of the line when the airline calls for people with a disability to board first. Crowds and tight spaces cause her extreme anxiety and I want to say “We can have her wait to board, but if she has a meltdown on the plane, it may delay your travel longer than the 1 minute your waiting now!” I understand that she has an invisible disability, but I cannot tell you how many times people have made rude comments when she has a doctor’s note for priority boarding or a fastpass for rides at theme parks. When she was younger she and I would wear t-shirts when we went out, explaining the characteristics of Autism – “Autism would your recognize it if you saw it?” I don’t want my daughter to have to wear a label that says she has Autism, but I also hate the unsolicited negative remarks that she receives from random strangers when they don’t understand her challenges. When you have been yelled at by strangers and made fun of by those who don’t understand your challenges, it takes a toll on your self worth.
As a Special Olympics Global Messenger, Bree was invited to be the athlete spokesperson on a project with Special Olympics and United Airlines. It was an amazing experience for her to be able to share her story and what helps her when traveling. Here is an article that appeared in the July, 2018 United Hemisphere magazine (page 12) explaining the partnership. Bree hopes to be able to help make travel a better experience for all, but especially those with disabilities.
News Announcement She can speak first-hand of her experiences and only hopes to help others to not have negative experiences.
Here are a few articles/tools I have found on making travel easier for those with Autism and other disabilities:
Preparation before a trip:
I hope these resources can help your travel experiences go well. I’m not going to lie, it wasn’t easy exposing Bree to stimuli and making her face new experiences. Oh the trials and tribulations!! Yes, we all have travel scars, memories of hours of crying in hotel room bathrooms or her siblings having to wait outside the gates of Universal Studios as their parents chase after their sister who’s having another meltdown. Was it worth it? YES! I can definitely say yes. Just the other day Bree’s cross country team traveled to South Carolina, a state she had never been to before. Even though she knew I was at work, she faced timed me to share her excitement of another first. She takes pictures of every new state sign as she enters. Most people cross state lines without notice, but we celebrate every new state, every new experience! In a few weeks Bree will take her first trip out of the country and I can honestly say I never dreamed Bree would ever need a passport.
I now reflect on those moments that were hard, very, very hard, but they made way to extremely good adventures and so much personal growth. I can’t promise every vacation or every trip will be wonderful, things don’t always go as planned for anyone. All I can say is that if we didn’t keep exposing Bree to new things, she wouldn’t be having these experiences now. We wouldn’t be seeing this growth. As I have said before, Autism is 10 steps forward and 5 steps back. As long as we move forward even with baby steps, we are heading in the right direction! It was easy to stay home, it was safe, but I can honestly say there is no greater gift than being able to watch your child’s eyes shine at the sight of seeing the beauty of the world outside her front door.
(Photo credit: Emily Bogucki)
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 is now 21 and attending Tennessee Wesleyan University in Athens, Tennessee. She is pursuing a Bachelors Degree in Social Work and hopes to advocate for and help others who face challenges in life.