I was having a hard time coming up with something to write today. One reason being I have had no time to think, let alone write. We hit the ground running this morning with school, aquatic therapy at the Children’s Institute, the grocery store and gymnastics.
In the midst of our crazy day, inspiration struck. During our appointment at the Children’s Institute, we encountered children working very hard to accomplish tasks that come easy to you and I. It was eye opening. Some of their disabilities were visibly obvious. I thought about what Haley would have said or thought had she been with us. Would she have asked me a question? How would I have addressed it? Would she have said something rude? Later, during this same day, we encountered a little boy who made a comment about the way Sienna looks to his mother. It’s the second time this little boy has said something. He obviously has questions. His mother covers his mouth and hushes him out the door. She doesn’t know what to do and she is embarrassed.
Here is what I want you to know. I get it. Your kid notices something different about my kid and your kid doesn’t have a filter cause he’s a kid. I am not offended. Let me help you. Don’t dismiss your kid. Don’t ignore them. Questions are good. Even if your kid says something negative about the way my kid looks, it’s okay. Ignoring it is not okay.
Teach your kids about differences. I like to tell Haley that God makes people in all different shapes and sizes. We are all special and everyone is beautiful. I explained Down syndrome to her by reading one of our favorite books, “47 Strings: Tessa’s Special Code”. I am happy to lend it to anyone. It explains chromosomes on a kid level. Haley still doesn’t completely understand, but we talk about it. We don’t ignore it. If you ignore something your kid is saying, you are teaching them that we can’t talk about it. You are teaching them that it makes you uncomfortable. Different is okay. In fact, we think different is pretty cool.
A fellow Rockin mom shared a wonderful anecdote with me when Sienna was born. Unlike me, she had a very positive experience when she learned of her child’s diagnosis. The doctor who delivered the news had a teenage son with Down syndrome. He explained that intelligence comes in all shapes and sizes and from what he had experienced, people with Down syndrome have high emotional intelligence.
Emotional intelligence is defined as the ability to identify and manage your own emotions and the emotions of others. It is generally said to include three skills: emotional awareness; the ability to harness emotions and apply them to tasks like thinking and problem solving; and the ability to manage emotions, which includes regulating your own emotions and cheering up or calming down other people.
I know people that are incredibly intelligent that are completely out of touch with their emotions and the feelings of people around them. An IQ score is, after all, just a number. It does not reflect the ability for a child to have a wonderful, fulfilling, and successful life. And it does not measure equally important attributes such as creativity, personality, perseverance, and life experiences. We have no idea what Sienna’s capabilities will be. My job as her parent is to help her soar with her strengths. If emotional intelligence turns out to be a strength, she will be able to work through whatever struggles she faces and to me that’s more important than being intellectually intelligent.
That’s not to say she won’t be intellectually intelligent also. People with Down syndrome complete high school, more are going on to a postsecondary education and a handful have even received graduate degrees. An increasing number of colleges and universities have programs that are specifically designed for differently-abled students.
Today’s post is a little tough to write, but I feel it’s important.
It’s NEVER acceptable to use the R word. Since Sienna has been born, I’ve heard it used by close family members, close friends, and even a teacher just last week. These terms are never acceptable. There is no proper context for them.
When they were originally introduced, the terms ‘mental retardation’ or ‘mentally retarded’ were medical terms with a specifically clinical connotation, however they have been used widely in today’s society to degrade and insult people with intellectual disabilities. When the r word is used as synonyms for dumb, stupid, or drunk by people without disabilities it reinforces painful stereotypes of people with intellectual disabilities being less valued members of society.
The next time you hear that word, please correct the person using this outdated term. There’s ALWAYS a better word. Do it for Sienna.
Is she high functioning?
When Sienna was first born, one of the questions I was asked the most was, “Is she going to be high functioning?”. Down syndrome has no spectrum. It affects different people in different ways. It’s an extra chromosome in every single cell of the body. We don’t know what strengths and weaknesses Sienna will have, because she’s just a sweet baby whose personality is just starting to emerge. We love her no matter what, just like any parent loves their child unconditionally.
I am posting a picture that’s closeup of her beautiful blue eyes. If you look close enough you can see her Brushfield’s spots(speckled iris). They are little white spots that are slightly elevated on the surface of the iris arranged in a ring concentric with the pupil. These spots occur in typical children, but are far more frequent in Down syndrome. They were described in 1924 by Thomas Brushfield and are due to aggregation of a normal iris element (connective tissue). I could stare into her eyes all day. They are one of my favorite things about my girl. Can you imagine how much happier the day of her birth would have been if my Doctor chose to point those out instead of all the negatives?
What will she be when she grows up?
Author, College graduate, Artist, Business owner, Zumba instructor, Preschool teacher, Actor, Musician, Barista, Professional Golfer, Model, Body builder, Councilwoman
These are just some of the professions currently held by successful adults with Down syndrome. Before I had Sienna, I had no idea that people with Ds were capable of such amazing things. One day, you or someone you know might have a child with Ds. I hope info like this makes us all realize that everyone is capable of greatness.
Reach for the stars, Sienna Mae ✨
The month of October is Down syndrome awareness month. If you follow us on Instagram (@thislifewegotblog), you know that we have been posting a fact, an anecdote, and pictures of Sienna each day of the month. Some of the posts have been more meaningful than others so I have decided to share a few of them. If you’d like to see all of them, please follow us on Instagram. Thanks so much! We hope you enjoyed learning along with us.