As we enter the gym for kids, I can see the manager quickly take note of our daughter’s quirky gait. She comes to introduce herself and hears slightly slurred speech and incomplete sentences. Her radar goes off, and what comes next is what we have unfortunately experienced far too often.
Our daughter, Rylae-Ann, was born with a rare disease known as aromatic l-amino acid decarboxylase (AADC) deficiency. The symptoms of this disease leave children with low muscle tone and completely dependent on their caregivers. It’s a difficult life that only becomes more difficult as your child grows older – if they are fortunate enough to make it past the age of 7.
Just going to the park required us to pack like we were taking a trip halfway around the Earth. Taking our bulky stroller added extra challenges going into buildings or navigating sidewalks – if sidewalks were even available. There are endless examples of the many challenges families in the rare disease community face. Over time, these challenges become expectations, and we learn to overcome them.
However, our daughter being denied or excluded is a challenge that strikes deep into our hearts. Every instance of it is like an anchor dragging us down into the depths of the dark abyss when we need to be focused on helping our daughter. My wife, Judy, and I motivate each other, but it never gets easier each time we experience it.
A week of exclusion
Three years after our daughter had gene therapy, she is making amazing progress. The growth Rylae-Ann has made, and the skills she fought to learn are miracles we celebrate. She still has a list of goals, but we feel so blessed. However, an onlooker or stranger won’t know her story of triumph.
After Rylae-Ann started school earlier this month, we returned to a normal schedule. Our summer adventures were over, and it was time to establish the routines of work-school life. Her normal schedule includes extracurricular activities after school and on the weekend.
We look for engaging activities that put play and learning at the forefront. If she’s happy and moving, then she’s also accomplishing physical and learning goals. She needs to learn to be more social, so joining group activities is important. It turns out that’s easier said than done.
The first was during a trial class for taekwondo. Rylae-Ann did her best, and we weren’t hoping for anything beyond that. After the class, the instructor said she worried about us driving too far and that Rylae-Ann should find a closer place. I am not sure what made her come up with that excuse, but she had no idea where we even lived.
We moved on. The second place was a singing and dance studio. We hoped to build a love of music. Also, singing would benefit her speech. The owner talked with Judy and me and nodded as she listened. Rylae-Ann kept busy by exploring the studio. At the end, the owner thanked us and told us she would be back with us after she had time to think about it. Think about what?
We were the customers. She didn’t even engage with Rylae-Ann. She just looked at her and smiled. To us, there was nothing to think about. We understood what she meant and went out.
The third time was at a gym for kids. We talked over the phone about our goals for our daughter and her limitations. They explained how the gym would be a great place for her. There were only seven students, and the maximum size was 12. We were excited, and Rylae-Ann even entered with minimal anxiety. However, after meeting Rylae-Ann, their tune changed.
The manager explained how the class was almost full. This would prevent them from giving her enough attention, and that kids should be independent with gymnastics. This was not a gymnastics gym. It was a gym that had songs, dance, and play. On top of that, what 5-year-old comes independently to a gym? Even typical kids are still learning.
We saw the real message between her words. We thanked the instructor for her time and made a direct line away.
It was a bad moment, but we were still going to have a great day. We went to the park and played with the kids who were around. She rolled and hung from bars, accomplishing what we set out to do.
Public parks have never let us down. Family time at the parks offers the perfect combination of fun and exercise. Since Rylae-Ann was young, we always went to parks and did our own activities. Although it does not accomplish the social skills we want to foster, it will always be a place we can go.
The importance of inclusion education
We continue our journey and always make it past any barriers that come our way. However, a 2022 study published in The Journal of Special Education found that inclusion supports greater improvement, so we cannot give up on society or pass on opportunities to fight for inclusion.
There will be similar challenges in the future, and we always keep in mind that other families are fighting even greater battles. Our daughter has made great progress, and that has granted her access to more of the neurotypical world. But we plan to venture hand-in-hand with Rylae-Ann.