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A Request About Raising Awareness, From the Mom of a Child With Down Syndrome

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I’ve been thinking quite a bit recently about the best ways of raising awareness and spreading positive messages about Down syndrome, and how I and other members of the Down syndrome community are working so hard at achieving a better society for our children. I’m trying to share my son River’s story and show the world through the internet that there is nothing to fear. I want to show that life with our child with Down syndrome is amazing, and I feel that I am slowly starting to achieve a small part of that.

I’ve joined groups on Facebook specifically for parents of children with Down syndrome, and I can’t even express how beneficial this has been for me. Living in Tanzania can be a lonely experience, as I am the only mother of a young child with special needs that I know. Now I’m not saying I’m a lonely person, as I’m not. I have great friends and an amazing husband, but it can be isolating when there is nobody to talk to who is experiencing the same things. I’ve “met” great people through these groups, and the support I’ve gotten from the Down syndrome community is priceless.

What I have noticed through these groups, though, is the different ways people deal with those who have no experience with Down syndrome. There have been a lot of discussions about people in society making uneducated comments and being criticized for what’s seen as being ignorant and rude. I’m starting to feel that our actions as parents of children with special needs can actually make or break our quest for an inclusive society.

For example, I’ve heard a story about a parent who saw a woman at the supermarket staring at her child, so she stared back at her until she turned away, seeming embarrassed. I’ve heard another story about a parent responding with anger to someone asking if her child was “slow.” But what did this achieve? Did it help the child or the Down syndrome community? In my opinion, reacting with anger helps nobody at all.

Why assume that the lady was staring at in a negative way? I love watching the world go by. Maybe she was curious or maybe she was learning, and that can be a good thing. Maybe she has a relative with Down syndrome or a child with Down syndrome. Maybe she is watching and thinking about what a fantastic parent the mom is.

Asking if a child is “slow” is obviously a bad choice of words, and yes, I would have felt the need to respond and correct. But if that person probably meant no harm, I believe it is better to respond calmly with the purpose of educating.

In my opinion, don’t assume the worst in people — assume the best. It can make life a whole lot easier and enjoyable. I wrote a piece recently about how much I hate people assuming that our life is hard, and how nobody has the right to assume anything about my family without knowing us. Well, that works both ways. We also don’t have the right to assume what other people are thinking. I promised myself when River was diagnosed that I would always talk openly and honestly about him having Down syndrome. I would welcome any questions and answer with my head held high and a smile on my face. I would always be so very proud of him and want to show him off to the world!

We have the opportunity to help make a positive change within society, to help educate people and make the world a more inclusive place. The last thing we need is to make people feel afraid to approach us or ask questions. We say we want our children to be accepted for who they are, but how is that possible if we don’t give people the opportunity to learn? I want to teach my son to let these things go and not let them affect his life or the person he is. I want him to understand that sometimes people say silly things, but that is nothing for us to feel bad about, as we can easily put them straight without aggression. Just by talking to them and showing them our reality. I don’t want negative reactions to have any power or influence over the happiness of my son.

How I react to strangers is what my children will see, and it’s what they will learn from. If I react with anger and get upset, this might be how my babies will grow up reacting. I believe strongly that I have a duty to educate others about Down syndrome, to help people understand the joy my son brings to our family and that our lives are “normal.” We wouldn’t change a thing, and certainly wouldn’t change our children. Life is good, Down syndrome included.

Of course, we all want to protect our children, and I would fight for my boys with every breath I have. I just think there are other ways to do that than fighting, ways that might achieve so much more. I’m not saying that if somebody said something purposefully spiteful or hurtful to my son I wouldn’t defend him; there is no doubt I would. But I genuinely do believe the majority of people in public mean no harm and just might not know the right things to say. We were all uneducated once. I know now that a child has Down syndrome and isn’t Down syndrome. I know now how important people-first language is. I know now to never assume that there are things people with Down syndrome can’t do. I know these things now because Down syndrome is a part of my life, a very much welcomed part of my life. I have the best little teacher in the world in my son. He has taught me more than I ever thought possible.

As members of the Down syndrome community and parents of wonderful children, let’s use our knowledge and experience. Let’s welcome questions and softly correct people when they choose the wrong words or make ignorant assumptions. Let’s walk away from people knowing we have done everything within our power to open their minds, educate them and spread positivity.

Mom with two sons, looking at sons and smiling

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Originally published: February 27, 2017
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