“The Pain I Always Feared, the Truth Needed to Be Told”

I’ve debated for over a week whether I wanted to share this experience or not.  A part of me wants to forget the moment, but my gut keeps telling me this could be a learning experience for many.  So here we go…
About a week ago I was running errands with Henry and Charlie and needed to go to the bank.  Now because of Covid and all the extra precautions we have been taking to keep the boys safe (especially Charlie) it was very rare for me to take them inside anywhere.  We were cruising around Fred Meyer waiting for the ATM to be available when a mother and her son walked by the cart.  She instantly noticed the baby car seat inside the cart and leaned in for a quick look.  Before I could say anything she blurted out, “oh look, he’s a downs baby!”  My heart broke.  I couldn’t believe she actually called Charlie that. I wanted to rip this lady apart and express exactly what I thought about her ignorance, but I didn’t.
Her son then asked his mother what a “Downs baby” was and her second response was just as heartbreaking as the first.  She quickly said, “oh, it means he isn’t going to be very smart.”  I couldn’t believe what I just heard.  At this point, I was irate and on the verge of snapping.  I knew there was going to come a day where someone was going to say something about Charlie’s condition but I didn’t realise how much of an impact it would have on me as a mother.  This was the pain I always feared since the day we receive the down syndrome diagnosis, peoples ignorance.

I looked at the little boy and quickly corrected his  mother with, “he isn’t a downs baby, he is a baby with Down syndrome and he is going to have different abilities like you and I.”  She was mortified.  How dare I speak to her child without her consent.  She then told me I was wrong for speaking to her child and gave me the evil eye.  Did I care?  Not one bit.  The truth needed to be told.

It took everything within me to bite my tongue and in the calmest voice and smile on my face I looked her in the eye and said, “ You need to educate yourself about what Down syndrome is and how to properly address a person with Down syndrome.  Have a nice day!”  I walked away raging with mixed emotions  and couldn’t do anything about it.   Sure I could have been that person who created a huge scene in the middle of the aisle and humiliated her in front of a dozen other customers, but really what good would that have done?  Instead I took the high road and lead by example.  Henry was sitting right in front of me in the cart watching the whole situation.  I don’t want to teach him that it’s okay to act in rage, especially when it pertains to his brothers condition.  It is up to us as parents to teach our children the correct approach when a situation such as this arises.
Once we got into the car, I sat there and let it out.  I cried and thought about the world we live in.  Sadly, we live in a world were not everyone see’s my special little boy the way I do.  Unfortunately, we will come across individuals who don’t know the proper way to to address a person with Down syndrome or any condition at that.  And have to take the opportunity to educate them.  I have to find a way to not let rage get the best of me during situations like this.  Because let’s face it, i’m sure its not the only time I will deal with ignorant people.  I mean, I catch Charlie’s cardiologist and ENT doctors every visit referring to him has a “downs kid.”  Even some physicians don’t understand the importance of proper identification of a special needs person.   Therefore, I will educate.
The day Charlie was born I not only became his mother but his advocate.  It is my job to teach those around us that Down syndrome is just that, a condition that makes him unique.  And in a world where everyone strives to be different, I would say he is rocking it.  I’m sure this won’t be the only time we have to address this topic, but I will teach Charlie that everyone has something to learn and that his condition isn’t something to be ashamed of.
So if you ever come across a person with Down syndrome just remember they are a person too and have just as many feelings as you.  Always address the person first before the condition (a child with Down syndrome) and empathise for the parents who may correct you because the child you may have just incorrectly address is their entire world.
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