I had every intention of writing a blog about Hope’s physiotherapy and her journey over the past 2 years with her gross motor skills however, once again, I am changing plans. This time, not because of an article I read, but something that happened today while Ben was in K-mart. Something that we fear is going to happen over and over again and something that we really wish we could change.

When you look at Hope, what do you see? Does she look “weird”? When a child has Down syndrome, there are some differences that may show in their facial features. Some of the common features are slanting eyes, small chin, round face, flat nasal bridge, Brushfield spots in the iris, abnormal outer ears, and flattened nose. (For those who don’t know what Brushfield spots are, I didn’t know until right now either. Brushfield spots are small, white or greyish/brown spots on the periphery of the iris in the human eye.) I’m pretty sure most of those features can also be found on others and I’m certain most of us wouldn’t consider them to look weird.  With Down syndrome, I guess it’s just that they potentially have many of these features together, giving them a more distinctive look.

So, why all this talk of looking weird? Ben was in K-Mart today, just getting a few things when he overheard a group of teenage girls in the toy section. They were standing in front of some dolls making comments like “they look so weird”. Those dolls they were talking about were Baby Charlie and Baby Amelia dolls who have the features of a child with Down syndrome.

Thankfully, Ben didn’t have Hope with him today, and if he did she would be too young to understand and wouldn’t realise exactly what was being said. But imagine if she was with him and she was old enough. That one simple line, could have a huge impact on her self-esteem and how she felt about herself. How would you feel if someone told you that you look weird. You’d want to hide your face, you’d want to change who you are. These kids with Down syndrome are no different from you or I. They have feelings too. Perhaps, these girls felt like they were doing no harm. After all, they were only saying it about a doll, but really, why say it at all? Would you say it to someone’s face? I don’t think so. So, there’s no need to say it.

The issue isn’t just these teens though. The issue is what made them think these dolls looked weird in the first place. Once again, they are simply following the way of the world. Going by what is considered normal and anything that doesn’t fit that is obviously weird or strange and should be laughed at or ridiculed. It’s horrible, but it’s the way the world is and it’s what we want to change.  Not only for Hope, or other kids with Down syndrome but also, for all kids that don’t fit what the world considers currently to be “normal”. Why can’t we all accept everyone for who they are? Why do we feel the need to make fun of others? Why do we feel the need to be better than others? When does this need even begin? I see it in my 4 year old at times. At the moment, it’s more about winning a game, but even at this young age, he wants to win, he wants to be better. And he is looking at the adults around him to learn. As his parents, we play a huge role, but he also learns from other adults around him. He watches everything and takes everything in, even when you don’t realise. If we, as adults, don’t accept and treat others the same, kids will see that from a young age, so how are they going to learn to be any different.Another thing we get from the world, is this need to be ‘perfect’, to look good for others, to show no blemishes. Guess what… Nobody is blemishless. I feel like I’m going off on a bit of a tangent here but it’s where my mind is taking me right now so I’m rolling with it. The world considers beauty to be flawless skin, slim figure, long luscious locks, all perfectly made up to stand out in a crowd. (or something like that). Once again, all of this comes from the influences around us. The people around us, the people we see on television, the things we read. I guess while I’m not making excuses for these girls and what they said, it came as a result of what they’ve learnt from the people around them.

I’m going to get a little bit more personal and dig into my own life and my own childhood briefly. I did not grow up with any disability so that didn’t affect me in any way, but I struggled to fit in for years. I honestly don’t know what it was about me and I don’t know that I ever will. I wasn’t interested in make up, I didn’t have the trendiest clothes, I did all my homework on time and I didn’t skip school. Perhaps I just wasn’t “cool” enough. But it was like this for years. In my final year of primary school, I found myself playing jump rope with kids 3 or 4 years younger than me from my younger brother’s class, I had almost no friends my own age. In high school, I had a few friends here and there, but no one that stuck with me. I had a group of friends that I sat with at lunch time, but unless it was only myself and one other person there, nobody really spoke to me. I was invisible when others were around. So, I know what it’s like to feel like you don’t fit in. Where did that take me? Well, I got to a point as I grew older where I tried to change myself to fit in. At one point I made friends with someone and then did everything I could to become a person I felt like they would want to have around all the time. The music I listened to would be influenced by them, when I would buy clothing, I would ask myself whether it’s something they would like, or they would wear. Even when it came to eating, I tried to eat more of the things that I know they would like. I lost myself by trying to be someone else. When that friendship didn’t last, I had no idea who I was anymore. I hated myself and who I had become. It took a lot of effort, a lot of praying and a lot of self exploring to find myself again, and get myself back on track. Why am I sharing all this? Because I don’t want my daughter to feel the way I did. I don’t want her to feel so unaccepted, and like she doesn’t fit in that she goes through all of that. And I don’t know if I can do anything to stop it from happening, but boy will I try.

Now going back to Ben, standing in K-Mart, the girls in front of him, making fun of this doll, who is made with the features similar to his daughter. If I were there, I would not have kept my mouth shut. I would have pulled out my phone, showed them my daughter, and then told them to tell me to my face, that my daughter “looked weird”. I would have said something, but Ben, held himself together and walked away. Many of you may ask why he didn’t say anything, I know I did, but I think in this case, he made the right decision. Regardless of his intentions, it could have ended badly for him simply because he was a male on his own approaching a group of teenage girls.

It did hit him hard though and as he got back into the car, he had tears in his eyes. He was heartbroken. It’s one of our biggest fears for Hope. It’s a fear that she isn’t going to be accepted, that she’s going to be picked on and laughed at. We don’t want her to have to deal with it, but we know it’s going to happen. While these girls were laughing at a doll, it was a glimpse of perhaps what could happen in the future. We know that Hope is accepted and loved by so many but as she gets older, she’ll want that acceptance from her friends and peers. The sad thing is, we can’t promise everyone will accept and love her. We know we are going to have her come home upset because of something someone has said. We know we are going to have to try to help her understand why a group of kids didn’t want her to play with them. We know we are going to work hard to make sure she feels confident with who she is so she remains strong. I honestly think these kids with down syndrome are stronger than we all realise. They work hard with therapies, they have to work harder just to get their muscles to work for them, and then they have to deal with all the negativity. They are warriers.

You know, when I look at Hope, I often don’t even see the Down syndrome. Sure, it’s there, but I don’t think she looks different and I hope that some day, others see her the same way.  Sure, she’sll still have Down syndrome, and the features will still be there, but people won’t see it because it’ll be normal. It’ll be accepted. I know in the past I’ve spoken a lot about awareness. But this particular blog is about more than just awareness. It’s about acceptance. People are aware of Down syndrome, but their lack of knowledge about it, causes them to reject it. I feel like a bit of a broken record at times saying the same things over and over again, but saying it once is never going to do anything. It takes persistence to make a change.