10 things parents of children with Down syndrome want you to know
I am a special needs parent. My daughter has Down syndrome. She is not ‘typical’ or ‘normal,’ and I can see the curve ball that she may present to you in an exam room. To help you feel comfortable with her and other children with Down syndrome, here are some suggestions that I compiled with the help of other parents of children with Ds:
- See my child for who she is. Engage with her. Talk to her. Every child is different. They understand more about why they are in a doctor’s office than you may realize. Some have speech delays or need time to process what you are saying, but they can and will respond. It’s okay to be personal.
- Please refrain from using the term “downs,” “downs child,” or “downs patient.” Our children are diagnosed with Down syndrome. The plural form is incorrect.
- Please listen when I recount events and symptoms. My child has Down syndrome, but that’s not necessarily why she is sick, cannot achieve a milestone or is developmentally delayed. I understand my child’s capabilities. I am looking to you as an expert to help her achieve what I know and believe she can do.
- Be collaborative in my child’s health. As a parent, I am an expert in her care. Trust me.
- Be respectful of my time. What may seem like a simple appointment to you may have taken me an exorbitant amount of effort to coordinate. I am often exhausted – caught between different divisions tackling my child’s health and an additional number of therapy visits while trying to manage my household and personal sanity. You are important to me. I want to be there for your expertise. There are barriers outside of the patient exam room you may not be aware of.
- Please read my child’s medical chart and talk to other divisions about her care. I see so many doctors in a given month, week or day. At every appointment, I am asked the same questions about her history. If I see that you are familiar with her case, I feel reassured that you are engaged in her care.
- Ask me about my child’s accomplishments rather than what she can’t do. It’s inherent that children with special needs have some limitations. Celebrate the victories with me.
- Please engage with children that have special needs outside of the work environment. You will see and learn a lot more about them than you would in a patient exam room, medical chart or textbook.
- Please refrain from using terms like “low functioning” and “high functioning.” I will roll my eyes at you.
- Offer more than one solution for a treatment plan. I would like options, precautions and a fair evaluation of my child. I am doing all I can as a parent. Be honest with me.
If you would like more information, please reach out to the Thomas Center in Developmental and Behavioral Pediatrics at Cincinnati Children’s and the Down Syndrome Association of Greater Cincinnati (DSAGC). Both organizations are key in connecting families to resources, which includes medical professionals.
-- Nicole White
This list was put together by the families of the Down Syndrome Association of Greater Cincinnati – in particular, Kim Hart, Emily Chesnut, Lori Kozlowski, Brianna Lardie, Betsy Trent, Jill Dudley, Sal Fucito, Jenna O’Brien, Brandy Clark, Micah Duwel, Nichole Upchurch, Krista Maddox, Jenetta Thomas, Erin Brown, Jennifer Alge, Jena Wells, and Nicole White.
