graphic with text "down syndrome awareness month" with image of boy kissing woman on the cheek

I was robbed: The 5 Levels of Down syndrome

Posted by Spoonie Threads Staff on

graphic with text "down syndrome awareness month" with image of boy kissing woman on the cheek

October is Down syndrome awareness month--a time to celebrate the  amazingness of peeps who are rockin’ that extra chromosome! We invite you to meet Brandi, an awesome mother and advocate who shares what it means to be a part of this incredible community. 

We think your newborn boy might have Down syndrome. He has heart defects that will need to be repaired within a few months. We will be over here when you have questions for us.

image of child laying in hospital bed with tubing and medical devices

Did you ever play dodgeball in elementary school and get the infamous cold slap and hollow THUD upside the face because you weren’t paying attention like you should have? Yah, it kind of felt like that. Only way worse. For my husband and I, this was how we jolted though Down syndrome awareness levels 1 and 2 in about 20 seconds.

I Was Robbed

After hearing the doctors say this about our newborn son, my brain immediately scanned all memories for recollections of kids I knew or saw who might have had Down syndrome. Wait, did I even know ANY? How come I didn’t even remember any? Didn’t I go to school with kids who had Down syndrome? I slowly realized I didn’t. I searched my house for old yearbooks. I combed pictures looking for them, finally I found ONE picture towards the back of several kids who had Down syndrome in a room together. But I never remember ever seeing them in the hall or in any of my classes. Who had the right to take that experience of being with them and having them as friends away from me? I had no awareness.

Flash forward a few years during the beginning of my son’s elementary school journey and you can bet I was figuring out what inclusion meant and it wasn’t just for my son. It was for ALL the other kids he went to school with. I had some awareness.

My son turns 18 next month and has brought color, beauty, depth and OH SO much awareness into our lives. Awareness we didn’t even know we needed. Awareness that touches the very soul of everyone who opens their heart to him. This isn’t everyone, and that’s their loss. And let me tell you, that loss is more than knowing what Down syndrome is. It’s a loss of inner awareness they will never know.

woman and boy taking selfie in a car

What level of awareness are you?

We have all read those articles defining “Down syndrome” and telling the history of John Landon Down who was a British physician best known for his description of the genetic condition now known as Down syndrome in the late 1800’s.

As you have figured out so far, this article isn’t one of those. Those are great articles providing basic education about Down syndrome/trisomy 21, but they tend to gloss over the every day experiences. I have lived it, breathed it, shared it, advocated it, loved it like no other. Because of my son, I have come to realize just how BIG that word awareness can be. I have attempted to capture the layers of this awareness in 5 broad levels. Do yourself a favor and rate yourself. If you aren’t as aware as you want to be, go hang out with a cool kid who has Down syndrome. He will teach you ALL you need to know and then some.


1- Even just hearing the words “Down syndrome” and understanding it’s a lifelong condition that can affect anyone.

2 - Learning about all the medical & cognitive struggles someone with Down syndrome can have (but not all have the same ones).

3 - Having experience and time around someone who has Down syndrome and realizing they are more like other kids than not.

4 - Becoming a ferocious medical & educational advocate.

5 - Being so comfortable with Down syndrome you don’t even see it.


About the Author:

Brandi Young is a wife, mother, advocate and entrepreneur. She has extensive background and disability knowledge and has facilitated a local community support group of moms who advocate for inclusion and acceptance for over 15 years.

Because of physical and mental health struggles in her own family she started researching using natural solutions to support them after seeing serous side effects from other therapies. This led her to begin mentoring families to take control of their own health like she did with hers using essential oils and high quality supplements. Her son, Clay, is her number one business partner with skills in knowing how to help people feel better physically and emotionally due to his own experiences.

Contact her on Fb:
Or email:

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