By Erin Parks, Northeast Family Support Partner, Oklahoma Family Network.
My name is Erin, and I have a beautiful 20-year-old daughter named Taylor who has Down syndrome. My husband and I prepared Taylor for puberty and the concept of getting her period for many years before she actually started her period. We attended a puberty workshop for disabled kids. I read many books on the subject. I talked to friends that had already been through this experience with their daughter and even made a social story with step-by-step instructions and visuals. My husband and I also worked with her occupational therapist on how to best help Taylor pull the paper off the back of the pad, open up the pad, and put it on correctly in the inside of the underwear. We also had to work with her on changing the pad and how to properly dispose of them. I know this seems like a very simple process, but for a child that has fine motor challenges, this is actually very difficult and needs to be taught step by step. I also created a laminated piece of cardstock with pictures of what to do with the pad and hung it in her bathroom so she would be prepared for the day she started her period.
When she did start her period, I felt like she was well prepared. I think we both were actually very excited the day had finally come because we had been talking about it for so long. She did struggle with the pads though and how to dispose of them. It also did not help matters that she had very long, intense periods. She was very irregular at first, which I know is common, but her irregularities were extreme. Taylor and I went to a pediatric gynecologist who decided it was time to put her on birth control pills. She started taking the birth control pills, and the pills helped tremendously with keeping her period on a regular schedule. I knew exactly when to prepare her for when her period was coming and could make sure she always had the necessary items with her.
A little over a year after starting the birth control pills, Taylor started her beginning stages of regression and mood changes. We talked with her doctor and decided to change her birth control pills to a different kind in case the ones she was on were contributing to her regression and significant mood changes. Changing her pills though did not help her with the issues she was facing at the time. As the severe regression continued, she got to the point that she could not hold objects using a firm grip and lost all control of her bladder, becoming completely incontinent. The combination of having periods and complete incontinence was not an ideal situation. Her anxiety was extreme at that point, and she would get upset seeing what was going on and feeling she could not take care of it herself. At this time, our pediatric gynecologist actually moved to a different state and referred us to the only other pediatric gynecologist that was near us at that time, which was located over an hour and a half away, but we wanted to see someone who had experience working with children. My husband and I found that pediatric clinics tended to have more comfortable, sensory-friendly environments that suited Taylor’s needs at the time.
We discussed with the new provider all of the issues Taylor was having. Taylor had been holding her lower stomach, so the doctor ordered an ultrasound and other tests to cover all the bases. We did learn that Taylor had a few cysts, but they were not too concerning. With that said, my husband and I decided that doing a more serious intervention like Mirena (hormone-releasing intrauterine device) would be a helpful solution to not only help her with having to deal with her monthly cycle and all that entails, and this contraception might also help stop the growth of new cysts. We were very fortunate that the pediatric gynecologist had privileges at a children’s hospital that also housed our pediatric gastroenterologist at the time, and Taylor was scheduled to get a colonoscopy with him the next month. The gynecologist performing the surgery to insert Mirena worked with our gastroenterologist to coordinate their schedules so that Taylor could be put under anesthesia for both procedures at the same time. It was the ideal situation. Taylor has now had the Mirena for over three years, and she has not had a period or any complications. This simple procedure helped alleviate one of the issues that were causing so many challenges to her daily life.