I see the questions running through your head. The ones you want to ask, but are afraid will come across as rude or nosy. Maybe you can’t tell she has Down syndrome, so you’re wondering why my almost 18 month old isn’t walking or even really standing. Maybe you do notice she has Down syndrome so you’re curious about my daughter’s development, health, and quality of life. Whatever the questions may be, I’m here to tell you: You can ask them.
I know you’re probably trying to be kind and considerate, and that is very commendable. You may even think that not asking questions will be more inclusive because then you’re not acknowledging my daughter is different at all. Is that really what inclusion is all about, though? I don’t think so. I know I don’t speak for every parent of a child with Down syndrome, or other special needs, but I know I’m not alone in believing that true inclusion is about education and celebration. I welcome your questions; in fact, I would love for you to ask questions.
Just like any other parent, I want you to learn about my daughter. I want you to know how fun, playful, happy, and strong she is. I want you to know that I don’t think Down syndrome is a bad thing; that I’m happy my daughter has Trisomy 21. I want to share the joy she brings me and the rest of her family. I also want to share the struggles we have. If you want to know what kind of medical issues she has, I will gladly share them. If you want to know why she has a large scar down her chest, I will talk about how God brought us through the most terrifying 10 hours of our lives. I want you to really know her, and that includes getting to know Down syndrome.
If parents and loved ones of people with Down syndrome are not willing to answer questions, even tough ones, how will the world ever truly be inclusive? If you, as someone looking from the outside in, aren’t brave enough to ask the questions, how will you ever know what our lives are really like? I want to share my daughter and our lives with you so that if you or someone you know ever receives a Down syndrome diagnosis, you will know what life as the parent of a child with Down syndrome is really like. I don’t want you to have the same worries and fears I had. I used to be you. I used to be scared to ask questions for fear I would offend someone. If I had asked questions though, or engaged adults with Down syndrome, I may have had peace about our diagnosis much more quickly than I did.
So, the next time you see me at the grocery store, in church, at the park, or anywhere else, please know you can ask about my daughter with Down syndrome. Ask me anything you like. You aren’t being rude, you are wanting to make the unknown known. That is the true spirit of inclusion.