A Journey from Confusion to Joy: Parenting a Child with an Anxiety Disorder

By Kelly Winkler

The Beginning

Seventeen years ago on April 14, 2004 a dream I had imagined all my life came true. I became a mom. My first daughter, Bailey, was born and my life was forever blessed. The early years were what I would consider to be “typical”. Adjusting to motherhood and figuring out my new role as a stay-at-home mom.

As I look back at the toddler, years there were so many hints and clues of what was to come. As a new mom though, I didn’t see what looks so clear now. You might be wondering what anxiety would look like in an eighteen month old. I’ll tell you one story that I now know was the beginning of my sweet girl experiencing anxiety. It was Halloween and we had taken her trick or treating with her in her cute pumpkin costume. We went back home and she was so excited to answer the door to see all the other kids dressed up, Until a boy in a scary mask came to the door. We opened the door not knowing who was on the other side, and a teenager screamed, “BOO!” right in Bailey’s face. She began to cry as I think most toddlers would. The difference was that Bailey for the next year would say every day, several times a day, “No mask?”. I would have to reassure her over and over that no one would be wearing a mask that day. She just could not move past this scary experience. Now I know why, but back then I just kept reassuring her and defending her to all who said, “Really? She is still asking about masks?”.

As Bailey began preschool the struggles began to get bigger. School drop off was hard everyday. I watched as the other students began to adjust to the new experience of school, and yet my daughter was still crying every day. I would feel the stares of other parents and the teachers as she clung to me. I started to wonder, “What am I doing wrong?”. I would pick her up to see smiles and hear happy stories of what she had done during her school morning. I knew she liked school, but couldn’t figure out why drop off was so hard.

Then came the playdate and birthday party invites. It did not take long before I started turning down many invitations. Bailey would get to the event and would not be able to leave my side. Again, the stares from other parents and the children now asking her why she didn’t want to play with them. There were times we had to leave the party early because Bailey just could not get comfortable. Then we would get home and she would cry that she missed out on all the fun. My heart broke for her because I saw she was struggling and I just didn’t know how to make this better. This pattern continued into elementary school.

Searching for Answers

In the early years of elementary school teachers began to raise questions. Why was she struggling academically? What is causing her lack of focus? There seemed to be something going on, but we were not sure what. My role as an advocate for my child was growing. The official search for answers began. The school recommended we take her to a neurologist. Unfortunately, this led to a few misdiagnoses. The first was a seizure disorder. After second and third opinions, we settled on ADHD without hyperactivity. This allowed us to get her a 504 Plan for school, but still left us with many questions.

When Bailey was nine years old the struggle began to not only affect her academically, but the impact on her social development became apparent. She began to have difficulty going over to friend’s houses and would constantly be questioning her friendships. She began to fear things that were years away like being a teenager. Bailey would look for reassurance over and over that she would be ok. It became apparent that we needed professional help. We stepped into our first attempt at therapy. She was then diagnosed with generalized anxiety. Weekly visits to her therapist and practicing the tools he gave her became a daily job. She improved slightly and we seemed to hit a groove. My voice grew louder and I made sure the school understood what support she needed. At home we had some tools to help her through difficult days - until it was time for middle school. It felt like the floor dropped out beneath us and we rapidly fell to a place I never want to go back to, but I am also grateful for. I know that sentence seems strange. How could I be grateful for something that included the darkest days of my life? Let me explain.

Adjusting to middle school proved to be the biggest challenge Bailey had faced to this point. She quickly began spending most of her day in the counselor's office having full blown panic attacks. At this point, I had begun working part-time as a preschool teacher. That meant that I was getting phone calls at work daily. Eventually, attending school for longer than two hours was just too much for Bailey. She was placed in a special program where she attended school in a small classroom for two hours and the rest of her work was done through home instruction. She was back in therapy, sometimes twice a week. Things just kept getting worse. She needed to be near me at all times, constantly seeking reassurance on whatever thought was scaring her. At this point, I had three other children, but Bailey needed my full attention to just get through the day.

Then I received a phone call from the school that will forever be engraved in my memory. The school counselor said she needed my husband and I to come to the school because we needed to take Bailey to the ER to have a psychological evaluation. The next few days were those dark times I referenced above. She was admitted to the hospital and for the next three days we would only be able to see her for one hour a day. At the recommendation of her psychiatrist and therapist, we were finally able to get her discharged. Once we got Bailey home, we finally began to see the light at the end of this very long and winding tunnel we had been in for years. Bailey had seen things in the hospital that gave her a new perspective. She now found something ignited inside her to fight. We also had some clarity.

The Bittersweet Diagnosis

We now had an official diagnosis of OCD and Panic Disorder. What did that mean? At first, it scared me. This was no longer something she might be able to “grow out of”. I now understood that OCD and Panic Disorder would be forever a part of her life. It took a bit for me to process that. What would this mean for her future? Would she be able to do all the things she dreamed of? Then I decided I needed to jump into action. I began learning as much as I could about OCD. It was like finding a lost key. I had answers to so many questions. I finally was able to see that these struggles all pointed to chemical, structural, and functional abnormalities in her brain. My girl would finally have a way to get relief. I would make sure she had every possible chance she deserved. I spoke with her therapist and the school. We came up with a very specific plan for her. We began to use a workbook that would help her understand what OCD was and then began to use Exposure Response Therapy to address each obsession and compulsion. Helping Bailey to be able to see that her OCD was an illness, just like diabetes, was life changing. She finally saw it as something separate from her and not her identity. She realized there were tools she could use that would help her through the tough times. Meditation and yoga were two of those tools. She began to slowly face each exposure and after a lot of hard work, discomfort, and perseverance she began to emerge stronger than ever. It was like watching a butterfly emerge from a cocoon. It was magnificent.

The Future is Bright

My beautiful girl has now spread those wings and the joy and pride she gives me is immeasurable. Now when I look at my daughter, I see the strength that she has and I know her diagnosis has led her to this place. Don’t get me wrong, as a mom who has battled alongside her all the way, I still have moments of fear and worry. When that phone rings I won’t deny that if I allow it, my first thought is, “Oh no! Is she having another panic attack?”. Yet, I work hard to focus on the wins each and every day and not think ahead to the what-ifs of the future. This has become part of my practice of mindfulness and self-awareness. Those what-ifs certainly still sneak up on me from time to time. Then Bailey shows up in this world as she is and I am right back to the joy of the moment. Her experiences with OCD and Panic Disorder have given her an opportunity to find strength, self-awareness, empathy, and the drive to bring mental health awareness to all. As a junior in high school now, I have heard for the past several years the same sentiments from her teachers, “She is a hard worker, a dedicated student and friend, an advocate for herself and others, and a joy to have in class”. It is with such delight that I watch her face each challenge with vigor, allowing herself to do the things she loves. I have the pleasure to watch her perform on stage all the while knowing where she began. It is an understatement to say she amazes me. I cannot wait to see what her future holds.

Kelly Winkler is a mom of four, teacher, Kidding Around Yoga Trainer and host of the Mindful Moments for Families and Schools Podcast, which can be found on Apple Podcasts and Spotify. You can follow Kelly on Instagram @mindfulmomentsforfamilies.