I live with Down syndrome (DS) every day. Five years ago, my daughter was born with DS. Initially I didn't know what to do. I wasn't familiar with the disorder and didn't know anyone that had any knowledge about it. Someone aware of Norah's condition made a phone call, and I was contacted by a woman that changed my life forever. She introduced me to a vibrant, active community in Memphis that celebrates and supports families and individuals living with Down syndrome.
I've learned a lot over the years. And I'm still learning. One of the major lessons has been all the myths and stereotypes associated with DS. If I had to spend the month of October doing anything for my DS community, it would be to spread awareness and debunk some of the myths.
Please note: Yes, I've had these conversations in real life!
1) Why the name Down syndrome? What is so "down" about it?
I have heard, "Oh she isn't depressed," or, "Why it can't be up syndrome?" Well, Down syndrome is named after Dr. Langdon Down. He was the first doctor to discover the similarities in its features in 1866. Therefore, it was named after him. It really isn't that deep, and has nothing to do with a child's abilities or lack thereof.
2) Kids with DS are always so happy.
Really...Norah missed this memo. Children with Down syndrome go through the same emotional roller coasters that any other children go through. They can get angry, sad, mad...the list is endless. Norah is a sweetie but has attitude for days. She doesn't smile often nor is she affectionate. When she is, you better enjoy every minute of it.
3) They all look the same.
Insert mom side eye here - This is somewhat true. People with DS share similar facial features: flattened nasal bridge and almond or upward slanting eyes. But this is not always the case.
4). People with Down syndrome will never live a normal life.
How do you define normal? There are adults living with DS supporting themselves. They have jobs, homes, families. The only limitations they have are the ones society sets for them. Norah's life to me is her version of normal.
5). Only old people have kids with DS.
First of all, I am not that old lol. Anyone can have a child with DS. There is no age requirement. I didn't do anything wrong for her to have DS either. And if you are reading this, and you are a new mom with a child with DS, don't allow anyone to make you feel like it's your fault. Down syndrome occurs when there is a duplicate in chromosome 21. That's it. Only a very small percentage of DS cases are hereditary.
6). Down syndrome is rare.
It may seem that way if you don't have a family member or know a person with DS. Before I had my daughter, I don't remember crossing paths with another DS family. But you don't notice things when you're not looking for them. Once I had Norah, and I joined the Memphis DS community and some Facebook groups, I realized just how common DS really is.
7). Your life must be so hard. I am so sorry for you.
I don't believe my struggles are any more difficult than the next mom. I may have more on my plate, but there is no need to be sorry. Life can be hard for everyone. Having a child with Down syndrome has changed my life for the better. Now, I do get tired, but what mom doesn't? I have learned to slow down and enjoy the little things. I don't sweat the small stuff. We do more as a family. We celebrate life.
One thing to remember is that they are individuals first.
Norah is a beautiful little girl that happens to have Down syndrome. She isn't her diagnosis. Her life is just like any other toddler. She loves to eat, dance, boss people around, play with her sisters, and get into everything. All she wants and needs is to be accepted for who she is and not who other people expect her to be.
Please take time to visit www.dsamemphis.org and get more information about Down syndrome and see how you can help! They host their annual Step Up for Down Syndrome Walk every October. It is a wonderful event. We love it.
How has Down syndrome changed your life? What would you share with others to raise awareness?